Kev's Update

Unveiling

2011-11-21T16:35:00.003-05:00

Yesterday we had the unveiling of Kevin's headstone at Calverton National Cemetery, where Kevin chose to be buried. It's a Jewish tradition for very intimate friends and family to visit the grave for the first time within the first year of mourning — typically close to the end of that period — to hear scripture read, to pray together and to share words of remembrance about the loved one.

Kevin's family was not able to make the trip nor were my parents, but they were there in spirit, and members of our spiritual family were there.

I told how Kevin thought about an epithet, and then chose not to have one. Kevin wrote beautifully, especially in this blog, but he needed lots of processing time to access his thoughts and feelings and put them into words. And sometimes, after lots of processing words failed him still. In the eleven months and eleven days since Kevin died, I have come to appreciate how some things take lots of time to process, and how still, some feelings are too deep for expression and some experiences and relationships too complex for summation. It's why I haven't kept up this blog the way I thought I would.

But we who were there did try to put some of how we felt about and thought of Kevin into words. We remembered Kevin's relationships with us. We spoke of the his consistency of his character, the heroic way he fought his battle with cancer, and the peace and grace he showed in his last days. We remembered how he made us laugh. I recalled how he loved war movies and was moved by the way a true soldier faces death — with a combination of acceptance and defiance. He became what he admired, and then he surpassed it. The three of us with him in that room when he took his last breath had the same feeling of not so much watching someone die, but watching someone leave joyously — though coupled with the pain of leaving us behind — for the ultimate adventure. We felt G-d's presence in that room, and yesterday, we remembered that, too.

For me, yesterday was a significant part of the very difficult process of saying, "goodbye" — wrestling with the letting go and holding on that is part of mourning... By going to the place where is body lies in the ground, I tried to get my brain and my heart to comprehend what is still at times unfathomable — he is no longer here. In this lifetime, I will never again converse with him, touch him, see him — only in my memories. And I'll never again make new memories with him. My heart continues to break over that. But also in that peaceful, orderly setting, we comforted ourselves with the knowledge that Kevin is now at peace. For him, all now makes sense, all questions are answered, chaos, turmoil, pain and anguish are forgotten.

After the graveside ceremony, we gathered at my home and shared more memories. Feeling the need to remember how alive Kevin's spirit now is, I read a written exchange between me and Adrian, Kevin's best mate from Australia, that occurred on 12/19/2010, nine days after Kevin's passing. I'd like to share now with all of you.

To me, from Adrian: Something I wanted to share with you was that on the day of Kevin's passing, I was at work when a butterfly flew around my [ground moving] machine and up and down the door as if trying to tell me something. I guess at the time I was thinking about Kevin a lot and for some reason when I sighted the butterfly, I became a bit emotional thinking about the Indians and the birds that they see when someone passes.

Next day we learn of Kevin's passing and I share my story to Marg about the butterfly and lo and behold another arrives at our door doing exactly the same thing. This brought us both to tears and the next day at church we shared the story and yet another arrives at the door of the church doing the same thing!

Now thinking I'm going a bit mad the other day after breakfast, I went outside to put my boots on and another came and landed on my hand and just stared at me.

Did Kevin have an affiliation with the butterfly clan of the world or am I really going mad?...

My reply: Thank you for sharing this, Adrian.

Though Kevin had no more connection to butterflies than he did to other beautiful things in nature, I do think there is REAL significance to your "visitations."

As Kevin's body began to succumb more and more to the ravages of the disease, he began to become more and more curious about how his resurrected body would look, feel and operate. We talked about it extensively during a day when he rallied physically, just a week before he died. If you listen to the song he chose for the funeral, you'll know he was really looking forward to shedding his old body.

I think that the message [of the butterflies] is one of comfort for us. Not only is his new body free from pain and suffering, it is as changed as a butterfly's is from a caterpillar's. He is experiencing a new existence that is unfathomably light and free compared to his earthly body.

When I called my mom on Friday morning to tell her that Kevin had gone home, she told me that she had had a dream that morning in which Kevin was telling me he had invented a new greeting card with a video embedded in it. He said that what was unique about it was the content of the video — him kicking his heels up and dancing like crazy — something no one had ever seen before. (That's for sure!) My mom woke from her dream and looked at the clock; it was 5:03 a.m. Kevin breathed his last breath at 5:00 a.m.

Yep, butterflies are free, and so is Kevin. The two pictures I now have of him — dancing freely and flying with a lightness of being — do ease the pain of loss. I hope they do the same for you....

No, Kevin is no longer here with me. His body rests at Calverton, but he is not there either. He went off on the ultimate adventure where he is no longer encumbered in any way. He is freer than he ever imagined he could be. Reminding me of her dream, my mother sent me this poem the other day:

When we are healthy, we walk

When we are decrepit, we shuffle

But when we are beyond ourselves with vitality,

We dance!

— Eugene Peterson

A Eulogy After All

2011-06-19T13:19:00.000-04:00

It’s been six months and 9 days since Kevin’s passing. During that time I’ve thought often about reaching out through this blog. There are so many things to say, and I kept getting hung up on which things to say first and how to say them.

When I thought about writing a eulogy for Kevin’s funeral, I found myself unable to. I found it impossible to sum up a person who was to me in many ways enigmatic and full of surprises, even after so many years together. And I still don’t know how to really convey his “Keviness.” One only had to know him just a little while to see the best of his character: his courage; his faith; his absolute honesty; his good humor – to the very end of his life he delighted in laughing and making others laugh; his sense of duty in being a responsible citizen of his congregation -- taking seriously the preservation of sound religious doctrine, and his country -- arguing for a the conservative government he believed to be best; his boyish playfulness; his love for me and commitment to our marriage and my well-being; his love for his friends and family. But he was more than all of that. Even now after six months of processing, trying to describe Kevin seems to diminish him somehow. And talking about him in the past tense is more difficult than I can convey. He was Kevin, and I loved him, and I miss him terribly.

But there are stories about his journey that should be told and that those of you who have followed his blog deserve to hear, and so I’m going to try my best to finally tell them in a way that will do the man and the experiences justice.

I wish that somehow all of you could have viewed him in his final weeks. Throughout the years we were together, Kevin struggled with emotional aloofness, admitting freely to me that he related to the Paul Simon lyrics, “I am a rock, I am an island.” Retreating alone to “his cave” was his go-to defense mechanism when things got emotionally difficult or confusing. It was something he worked hard to overcome during our marriage and especially the last few years of his life. Sharing his journey on this blog became one place – a very important one -- where he learned vulnerability. In sharing his inner struggle with cancer, he discovered that what came back to him were levels of love, support and friendship, and the joy of helping others, that he hadn’t known when keeping his cards so close to the vest. In the last few weeks of his life, as he grew weaker, he became more and more vulnerable and open. The best way I know how to describe it is that his remaining emotional guardedness melted completely away, and we saw Kevin become “freer and freer” and softer and softer as he drew nearer to the end of his life.

He hated that he could no longer do things for himself such as walking alone to the bathroom or washing himself, yet he graciously allowed those of us who cared for him to express our love by doing for him. He said “thank you” for every little thing, and his eyes just shone with love and gratitude. What happens to the body in the end stages of cancer is frankly degrading. Kevin chose to face it with an acceptance and humility that somehow took away its power to be humiliating. I still marvel at that.

On the Friday morning one week before he died, Kevin rallied. He brought the chair out of reclining position, sat up straight, and gained back the breath he needed to speak. He asked me to bring his jewelry box from the bedroom. The wedding ring we’d bought a few years ago when the original one could no longer be re-sized as he gained weight was now too loose to stay on, and he wanted to put on the smaller one. And he wanted to wear the diamond stud earring I’d given him as a wedding present. Then he began to take me one-by-one through the things in his box that meant something to him: his sergeant’s stripes and military bars; the kippa he bought on his first trip to Israel, which his father now has; the pictures of me and his mother that were in his wallet… He talked about what things he wanted to leave to certain people. We reminisced about our life together: the wonderful travel adventures; the marriage lessons we wish we would have learned sooner; how grateful we both were that we’d found each other; how sad we both were that he had to go. I promised him again that I would be okay, that I’d learn to take care of myself in the areas where he’d taken care of me and that I’d ask for help when I needed it. (Mac experts should anticipate an occasional call.) We sat side-by-side holding hands, looking into each other’s eyes and smiling as we spoke. After a couple of hours he tired and the shortness of breath returned, taking his voice away. He sat back in the chair and reclined while I read to him from the book of Psalms, and he smiled to hear the familiar words that had instructed and comforted him throughout his lifelong walk with God.

I read Ps. 19, which had always been his favorite. When I read verse 9, “The fear of the LORD is clean, enduring forever; The judgments of the LORD are true and righteous altogether.” I couldn’t help but wonder how those words sounded to him now that he was on his deathbed, despite praying fervently to be healed, as he had been 7 years before. How did God’s judgments seem to him now? I looked at him and asked simply, “Is this still your favorite Psalm?” He smiled and beamed as he nodded “yes.” And I could tell that somehow the words had taken on an even deeper meaning for him. In his eulogy, Rabbi Bruce spoke of Kevin’s love for the military and his soldier’s sense of duty to follow a commander into harm’s way, no questions asked, as long as the cause just and the commander trustworthy. And that combination of devoted duty and trust was what I witnessed when Kevin, knowing his death was approaching, affirmed his whole-hearted agreement with the words “The fear of the LORD is clean, enduring forever; The judgments of the LORD are true and righteous altogether”. The joy and certainty of his affirmation astounded me. It was a holy moment, and it told me everything I needed to know about where Kevin was headed for eternity and the peace, and yes, even eager anticipation, he had in preparing to meet such a King face-to-face.

Many who were in our home in those last weeks and days – including seasoned hospice workers -- remarked that they never saw anyone face death with such peace and courage. Kevin was not a “preacher,” but he who shared so intimately throughout his journey would want others to know that death can be faced that way. Psalm 19 ends,

“Who can understand his errors?

Cleanse me from secret faults.

Keep back Your servant also from presumptuous sins;

Let them not have dominion over me.

Then I shall be blameless,

And I shall be innocent of great transgression.

Let the words of my mouth and the meditation of my heart

Be acceptable in Your sight,

O LORD, my strength and my Redeemer.”

Kevin wasn’t perfect. He was human. He did, and neglected the doing of, things he regretted. The words of his mouth and the mediation of his heart were not always acceptable in God’s sight. He wrestled with God and worked through some anger with him for sure. But I know that those above verses expressed the never-ending underlying prayer of Kevin’s heart. And in the end, it was evident to everyone around that God was Kevin’s strength, and Kevin knew he was redeemed.

I think that what made the manor in which Kevin faced death so extraordinary was the fact that Kevin arrived at the place of ultimate testing having done his homework. Kevin could never comprehend why people never took the time in life to ask the hard questions about God and faith and life in order to get to a bedrock foundation that goes beyond “feeling” or “sensing” or just “taking it on faith” or, “well I just think…” He knew that wasn’t good enough. Our bookcase contains a wide selection of books on comparative religion, and includes not just bibles, and books on traditional and Messianic Judaism, but a copy of the Koran and the Book of Mormon – Kevin read them all. He considered “all paths lead to God” a copout, and studied to know what was true, and what wasn’t. His favorite book was one he purchased in his early 20s entitled In Understanding Be Men. It’s a book that takes the reader through the central teachings of Two-Testament faith, challenging the reader to ask the hard questions about them. One does not emerge from that type of study with a casual faith. Kevin knew with a certainty what he believed about God and His Messiah, and why.

When it came to faith, and most things for that matter, Kevin was always more comfortable with facts and precepts than subjective feelings and experiences, but even though Kevin was all about objective truth and testing spiritual experiences, his “homework” went beyond intellectual searching. He invited God to lead and guide him, always praying for God to change his heart, reveal his will and give him the strength to obey it. As things became more emotionally and spiritually challenging for us, our prayer became simpler, “God, meet us where we are.” And God did. (Those stories in another post.) My point is that it was clear to me that Kevin faced eternity with such peace, not only because of what he believed about God, but because of his relationship with God -- he knew, loved and trusted him.

I can think of no better way to honor Kevin’s memory and legacy than to suggest you read Psalm 19 and ask God, even if you’re not sure if there is one, to reveal to you how a life can be lived in agreement with those words in a way that produces joy, even in the valley of the shadow of death. Asking the hard questions, and searching out the answers that might upset one’s comfortable worldview is not a challenge for the faint of heart, but I think Kevin would double-dog dare you. I think he would want you to face the final test having done your homework.

Well, this started out as just telling a story, but I guess it turned out to be a eulogy of sorts after all. There are more beautiful stories yet to tell, but this post is long enough, and I need to dry my tears, get back to the present, and take care of myself as I promised Kevin I would. But I won’t let six months go by before I post again.

Thank you to those who took the time to read this, and who continue to hold Kevin in your hearts.

Roni

Kevin is at peace

2010-12-20T16:12:00.000-05:00

At 5:00 a.m. ET on December 10, 2010, Kevin Kersey, my husband, partner, hero and best friend for nearly 19 years, was released from his 7-year battle with cancer. He is now at rest and cancer-free. His passing was peaceful and with minimal pain with me at his side, attended by the most loving of friends. Extraordinary peace was evident to all who witnessed his final days and hours. Kevin's final words were to tell me "I love you," and his last action was to lift his arms towards Heaven.

Funeral services were held Monday, Dec. 13, 2010. The eulogies from Kevin's funeral service, as well as the song that Kevin chose to be sung were recorded and loaded onto Beth El's Website. The recording can be downloaded from here: http://bethelnyc.org/category/sermons

Kevin requested that in lieu of flowers, donations be made to any of the following charitable organziations to which he was dedicated:

Congregation Beth El of Manhattanwww.bethelnyc.org

The Patients' Fund for Creighton University/Brian W. Loggie, M.D. PMP Cancer ResearchGo to http://www.creighton.edu/development/makegiftonline/index.php Choose "Outright Gift" On the next page fill in the starred fields. Under Gift Designation check "Other Designation" & fill in "PMP Patient's Fund - Dr. Brian Loggie". Under Special Gift Instructions fill in "In memory of Kevin Kersey". On next page under affiliation choose "Friend/Donor" and complete information.

Jewish National Fundwww.jnf.org

May Kevin's memory and legacy continue as a blessing in the earth. I will do my best to continue to use this blog as he did -- to inspire courage, faith, grace and hope in the face of adversity. I had the very best example...

Love,

Roni

December 2 Update

2010-12-02T10:56:00.002-05:00

Last night was the first night of Chanukkah. This was the first year of our marriage that Kevin and I didn't sing the candle-lighting blessings together. Kevin's shortness of breath has reached the point where talking is very difficult, and singing is impossible. I sure missed his off-key voice.

Even though his breathing is shallow and he sometimes has difficulty getting his breath, the good news is that the loud wheezing that drove him crazy has disappeared, thanks to drugs and prayer. Other than that, this is a wasting disease, and there is no way to put a positive spin on what is happening to Kevin's body. It is helpful to remember though, that the spirit can rise above physical limitations, and Kevin's spirit continues to do so.

The steroids helped his appetite to pick up for a day or two, but now he is taking in little more than protein drinks and continues to lose weight and grow weaker. The ten or so "normal" steps to the bathroom from his chair in the living room had become arduous, as it took more and more small shuffling steps to get there. So a couple of days ago he asked to be wheeled to the bathroom in his wheelchair from now on, as the short walk just had him gasping for breath. He needs my help lifting him in and out of the chairs, as he is no longer strong enough to push himself up unassisted. That gives me a change to give him a hug once I get him to his feet.

Kevin is sleeping more. Some days he just nods off several times for 30 mins to an hour at a time, other days, it's more like his sleep is interrupted by a couple of hours of wakefulness at a time. When he does sleep, it's often very deep and when he wakes, he feels like he's been asleep a long time. Earlier this morning, he woke after sleeping for about an hour, looked at the time and exclaimed, "Only 9:00!" then tongue in cheek, "Have you been giving me time-slowing drops?" I sort of have -- hospice has me giving him morphine sulfate drops to help his breathing when it gets really bad.

He is still lucid most of the time when he's awake, but doesn't have the energy to do more than watch TV or movies with simple plots. A couple of days ago, we shared some good laughs watching Big together, and yesterday Rabbi Bruce came for a few hours to watch Band of Brothers (Kevin's favorite mini-series ever) episodes with him. A couple of weeks ago friends helped me separate our sectional so that I could put the love seat part right next to Kevin's reclining chair. That way I can be comfortable and sit and hold his hand or snuggle up to his shoulder while we watch TV. He's in that chair 24/7 now, preferring it to the hospital bed for sleeping. (Best investment we ever made -- HumanTouch ergonomic recliner!) Elke, the angel-dog, can climb into his lap from the adjacent love seat, and does so regularly when she hears labored breathing. She just snuggles in his lap and comforts him.

A few days ago, I asked Kevin what he'd want to say the most if he could write in his blog. He said he'd want you all to know that he's not afraid. The panic attacks he was having awhile back were not due to a fear of dying, but rather due to a fear of hospitals (exacerbated by drug-induced anxiety). When he started feeling weaker, he was afraid he would end up in a hospital with IVs stuck in him and never leave. We are so grateful, that instead, we can do home hospice. He's told me often that he doesn't fear death. When we talked a few days ago about the peace he has, he said he's been thinking of the scripture that assures of eternal life for those who accept Messiah's atonement:

"So when this corruptible has put on incorruption, and this mortal has put on immortality,

then shall be brought to pass the saying that is written:

‘Death is swallowed up in victory.

Death, where is your sting?

O Hades, where is your victory?’” I Cor 15:54-55

I asked him if the next life was feeling more real to him. He answered that he has a sense that he's going home, but he still wonders what it will be like -- if we will have bodies that walk around or if it'll be more of an astral projection kind of thing. I think what he really wants to know is if there will be Harley riding in heaven. (I just read this to him, and he smiled and nodded vigorously at that last sentence.) I'd like to think so. Or maybe, the freedom and joy he's always felt when riding is just a foretaste of the freedom and joy that is the normal state of being in heaven. Either way, Kevin's always been up for an adventure, and I think he's up for this one, too. saying that even if he doesn't know what heaven will be like like, he knows it will be good. (He just nodded again, and he affirmed that this paragraph captures what he would want to say.) He's also greatly comforted by the certainty that his physical suffering will be over, and that he will one day see his loved ones again.

We continue to count our blessings, especially all the incredible support we receive. Rabbi Bruce and Debi were at our door in minutes on Sunday afternoon, and gave up hours of what they'd had planned for the day to be with us, after I called them, scared and sad -- it was the first time I'd experienced Kevin sleeping so deeply that he couldn't be roused. Kevin's family is very THERE for us and with us, even though they are in Oregon. thank God for modern technology that allows us to stay close. My family is also very supportive and wanting to help. Beth El continues to be like a family to us in so many ways, and our neighbors continue to be shining example of neighborliness.

We also -- as always -- appreciate all the emails, blog and facebook comments, and especially the prayers. I especially want to thank those of you who have written to say what Kevin has meant to you over the time you've known him. It's gratifying for him, and me, to know that he has been able to touch lives.

Happy Feast of Dedication (Hanukkah). Whether you are Jewish or not, it's a good time to reflect on the people and things you value in life and how dedicated you are to them. God continues to affirm to me throughout this difficult time why he is worthy of my dedication. More about that in the next blog.

Best,

Roni

Latest from Roni

2010-11-22T11:32:00.005-05:00

This is Roni writing.

Kevin has been wanting to write a new blog update — his goal had been to get one done last week after all the family visits were over — but he's been too tired to think through what he wants to say. I'm hoping he will feel a bit stronger and we'll be able to work on sharing his thoughts in a posting this week.

Kevin’s pain is now fairly well controlled with narcotics, but he has very little appetite. He does eat small amounts of food throughout the day — mostly cold creamy things like pudding, ice cream and yogurt and protein drinks. The loss of appetite is due, at least in part, to his body being less able to process food. Hospice says to concentrate on his comfort and not push him to eat.

Kevin’s breathing is labored (he’s on oxygen 24/7), and the least little effort gets him winded. He has to be supported now when he walks down the hall, and he sits to brush his teeth. He’s sleeping a lot, but never for more than 4-6 hours at a time, as he wakes due to breakthrough pain or wheezing. On Wednesday, Kevin was having a bad morning after a very restless night with lots of difficulty breathing. We called Rabbi Bruce, and he was here in minutes to pray with and for Kevin. Since then sleeping at night and breathing have improved overall. Even though Kevin still wakes up, he is now falling right back asleep after taking meds. or nebulizing, instead of staying awake like he had been. His nurse was here this afternoon, and she will talk to the doctor about increasing the steroid dosage in hopes that that will further alleviate the wheezing and muscle pain and maybe help increase his appetite as well.

In daytime, Kevin dozes some, but is fairly alert and cognizant when awake. We continue to have visitors, and though he doesn’t always interact fully, Kevin tends to rally when there are people around, becoming most animated when showing pictures or telling stories about his life. In addition to frequent visits from neighbors/friends/Beth El members, we’ve enjoyed recent visits from Jeff, Kevin’s previous boss at Time Inc. (Jeff brought an iPad with him; Kevin perked up to play with that!) and Neil and Debbie, old friends from Philly. (I’ve known Neil since we were teenagers and Debbie since our early twenties.) We are blessed to have so many caring people in our lives.

Speaking of caring people, since the last posting, we’ve enjoyed more visits from family. Kevin’s sister and her husband returned to Oregon on Saturday 11/6. The next day, my family – Mom and Dad, brother Rohn and sister-in-law Wendy, my niece Alanna, her husband Justice and my nephew Zach — rented a mini van and drove up together, bringing a yummy dinner with them. After a really nice visit, all but my parents returned to Philly. Mom and Dad stayed through Wed. morning. It was good being with my family as I haven’t been able to get to Philly to see them as often as I would like.

The following Thursday evening Kevin’s nephew Scott, his wife Tausha and Kev’s niece Hannah came for a long weekend. We asked them to go and play in Manhattan during the day and come back to regale us with pictures and tales of adventure in the evening. We’ve had the joy of introducing Scott and Hannah to the great playground of Manhattan on previous visits, and now it was their turn to share their love of the city with Tausha, who was seeing it for the first time. On Sunday, the kids (they’ll always be kids to us) announced that Scott wanted to stay with Kevin while I went into the city with the girls. The weather was gorgeous, and we walked for hours in Central Park, went to Zabar’s and saw a museum exhibit while Kevin and Scott bonded by watching Henry V, one of Kevin’s favorite movies. Most meaningful was when Kevin gave both Scott and Hannah treasured items that in some way signify a special joy or memory he shares with them; there were tears, hugs and lots of love.

Even though I no longer have house guests to feed, friends and congregants are still providing small prepared meals to help keep the caregiver healthy. I’m so grateful because not being on a fixed schedule, I sometimes forget about meals until it’s meal time and I’m hungry. When that happens, there’s always something at the ready that I can just heat up. What a blessing!!!

Hospice has been great. I can call anytime with any question or concern, and they either put me right through to the person who can help, or someone calls back within the hour. A nurse comes twice a week to check on Kevin, order any meds that are needed, provide tips for ways to make Kevin more comfortable, and answer any questions we have. If needed, she is available to come more often, and there is always a nurse on call for any emergency.

After not being happy with the first aide hospice provided, we asked our congregation to pray that G-d would send us someone wonderful. That prayer was answered with the arrival of Rosalee, who is not only capable and attentive, but sweet and loving. She’s here for four hours every weekday afternoon, which enables me to get out to run errands, take Elke for long walks and romps in the park, or nap. She loves Kevin and refuses to let her agency reassign her. She told me today that she has never thought about or cared about another patient the way she does with Kevin.

G-d has continued to be near to us in some very tangible ways. Though this is a very sad time, we are so grateful for spiritual strength and peace in the midst of it all. We keep hearing that there are people praying for us every day, and we feel sustained by those prayers. Thank you. Thank you. Thank you!

I just want to say that I'm sorry for not being able to reply individually to all the emails and voice mails, but I read and listen to all of them, and share them with Kevin. Your kind words continue to mean so much to us.

Update from Roni

2010-11-03T05:37:00.010-04:00

It's been awhile since we've updated, and there's lot's to report. I decided to go with the unabridged version, because there are so many people who should be acknowledged and thanked for the ways they have upheld Kevin and I in this difficult season, and I want to do that publicly. We would be overwhelmed -- in a bad way -- if not for the many people who are helping to ease our burdens. Instead, we are overwhelmed -- in the very best way -- with the love and support being showered on us. So, the first part of this blog is about all of the wonderful people in or lives, and the second part (keep scrolling down, there are a LOT of wonderful people) is an update on how Kevin's doing.

WE ARE RICH IN FRIENDS AND LOVED ONES

10/8 Kevin's brother Kent and his wife Terri arrived on the Red Eye from Oregon to spend a long weekend with us. Rabbi Cohen's family joined us on erev Shabbat for a meal and a wonderful evening hanging out with family and friends who have become family. Thanks Cohens for bringing challah, wine and dessert. Thank you Kent and Terri for making the trip, especially taking the red eye here and back to make it happen. We're still holding onto the wonderful memories we made together.

10/16 We hosted a movie night. 15 people (including 3 of the most adorable babies ever!), mostly from Beth El (our Two-Testment synagogue), came to watch the classic comedy Frisco Kid. It was a night of laughter and love and enjoying the company of people who have in shared in our joys and challenges -- and we in their's -- over the years we've been in NY and part of Beth El.

10/19 Our neighbors down the hall (our dogs are bffs) made a delicious dinner and brought it over. Thank you David and Nina! The six of us (that includes the dogs) had a wonderful evening just hanging out, laughing and getting to know each other better. We are blessed to have many caring, neighbors who keep saying "anything we can do..." and mean it.

1o/22 We hosted an open house in the afternoon. It was planned last minute, so not many could attend, but we were very touched that my co-worker David who has become a dear friend and his wonderful wife Cathy came. Thank you both for taking the time, despite Cathy's own health issues. And it was wonderful to see friends Larry and Mary with whom we bonded during Barbara Lee's (my friend and Larry's sister) battle with PMP. Thanks Mary for the gift of delicious and healthy chili (and the pot it came in!), which has made several easy meals for me and guests. Neighbors and Beth Elians Randy, Tammy, Brian and Rabbi Bruce, thank you so much for giving up time on your VERY busy weekend to spend with us, especially Rabbi Bruce who performed a Bat Mitzvah the day before and Brian who threw the party for his daughter, the Bat Mitzvah girl. A special thank you to our Beth El adopted "sister" Mee-Ae for schlepping all the way from Queens to come. Thank you so much Rebetzin Debi for taking me shopping, picking up yummy treats and helping me prepare beforehand -- couldn't have done it without you.

10/25 Kevin's Dad arrived from Oregon. I don't even know how to describe the special father/son male bonding that took place over the following days. Kev's mom joined us on Friday 10/29, and the time together got even sweeter. Mom brought a booklet she made containing stories and pictures of her favorite memories of Kevin -- what a treasure. On Monday they had to return to Oregon, and we said a tearful "goodbye" though it was more of a "see you later", as our shared faith gives us the confidence that we'll meet again in the next life and spend eternity together. There are no words to describe the deep, deep comfort that assurance gives.

11/2 We didn't have much time to be sad about Mom & Dad leaving before Kevin's sister Kathy and her husband Roger arrived last evening. Kathy's gift to Kevin is that he gets to boss his big sister around for a change (she admits it was the other way around when they were growing up). And she's already jumped right into the doting care-giver role. Roger's typically bouyant persona -- he literally hums happy tunes all the time, and has since I've known him -- just makes me smile.

Kathy and Roger will be with us through Sat morning, then my brother, his wife, my niece and her husband and my nephew come from Philly for the day on Sunday. My parents (also in Philly) will come with them and stay with us through Thursday morning. Thursday evening Kevin's nephew, his wife and Kev's niece come from Oregon and stay until Tues morning.

Whew. That's a lot of love to take in. Lot's of support makes having all that company a stress-free joy.

I've been able to take family medical leave -- at first a day or two a week, but full time as of 10/26 -- so that I can concentrate on caring for and being with Kevin and all these loved ones. My bosses and co-workers couldn't have been more supportive and have taken so much off of my plate in order to reduce my stress. I'm grateful to work for a company that cares for its employees and to have managers who are wonderfully caring people. Thanks everyone for the pitching in, the hugs, and the words of encouragement. It means a lot.

I don't know what we'd do without our Beth El family. Beth and Debi brainstormed with me how congregants anxious to help can do so, resulting in Beth coordinating meals to be delivered. The first complete meal donated by a Beth El member arrived Monday and last night I was able to just heat and serve, which meant that the four of us could be together, rather than spending time away from Kevin cooking and cleaning up. Debi also suggested reaching out to April to coordinate rides to and from the airport; April got everyone's flight schedules from me and made it happen. Rabbi Bruce, who is also our neighbor, has come over to pray, and help out by everything from bringing us a fan and portable air-conditioner to picking up a case of Ensure from Cosco, and has made himself available 24/7 for anything we might need from a rabbi or a neighbor. Debi's helped out in many other ways, including spending hours searching the web and scouring Whole Foods to find and purchase the most tempting, packed-with-nutrients-and-calories foods on the planet, resulting in Kevin being able to stop losing weight! Everyone else is praying up a storm, calling, visiting, offering things we hadn't even realized we wanted or needed... All this from a small, geographically disbursed shul that shows its faith by it's deeds. You guys Rock!!!

Special shout outs to: my neighbor Nan who picked me up in Manhattan and brought me home when I had to have a minor medical procedure a few weeks back and calls to see if I need anything; Michael B. who saw a need one day, and ran the errand to fill it the next; Danna, our sometimes dog-walker who offered to walk Elke anytime at no charge; everyone who has sent notes, cards or called -- you do so much to raise our spirits.

Okay, here comes the harder part to write...

HOW'S KEVIN?

The honest, short answer is that Kevin's health has been declining. Pain continues to be the enemy -- just when we think we have it under control with medication, the meds cease being effective, and have to be increased. Kev's now on some heavy-duty doses of some heavy duty stuff. His pain is caused by: referred pain from sites of tumor, so as tumors grow, pain increases; an increasingly sedentary life as he grows weaker; the vicious cycle of muscle tension caused by pain.

Disease progression and opiates for pain conspire together to weaken Kevin. When Kent and Terri were here in early October, he was able to walk with us over ten blocks to a restaurant for lunch and back home again. Now because of risk of falling, he's been instructed not to walk unaccompanied in the apartment. A wheelchair has been ordered for any trips outside. I'm hoping it arrives today, and we can go together to take Elke to the dog park, something he hasn't been able to do for awhile.

He has terrible dry mouth, and his appetite has been steadily decreasing, so his "meals" now consist mostly of protein bars, meal-repalcement drinks and ice cream. Fortunately, the thrush that had him eating almost nothing for a few days was caught early by the hospice nurse, and is clearing up, enabling him to take in more calories. His weight has stabilized for the past week at 166, down from 189 back in May. Kevin is 6'2", so 166 is skinny; he's also lost a lot of muscle tone.

His breathing has become shallow, and he now sleeps with oxygen tubing in his nose, and uses the oxygen sometimes during the day as well, when his breathing becomes labored. He also wheezes so loudly at night sometimes, that the sound of it keeps him awake. Hospice has ordered a nebulizer to help open up his airway, and we pray it gives him relief.

As difficult as it's been for Kevin to deal with the pain and the decreased independence, his strength of character continues to inspire me. I never do anything for him for which he doesn't say a heartfelt "thank you". At bedtime when we read scripture and pray together, he leaves the praying about his well-being to me; when his mind is not too foggy to pray, his prayers are for others or for how he can be used to bless others. Last night, this man who has so much to be sad or angry about, began his prayer thanking G-d for a long list of blessings. You who read this blog and send words of encouragement were on that list. Wow, he makes me proud to be his wife!

Still firmly intact are Kevin's sense of humor and brilliant wit, and our home is regularly filled with laughter. We both continue to strive to live in, and treasure, the moment and leave the future in G-d's hands.

We treasure you more than words can say.

Roni

Another Anniversary

2010-10-10T19:13:00.000-04:00

We just passed another anniversary.

October 8th, 2003 - Seven years ago from the 8th, I went into the ER with severe abdominal pains. We ended up staying in the ER for about 16 hours, and that includes being moved to another hospital where my doctor at that time had admitting rights.

October 9th, 2003 - Seven years ago from that date, I had an emergency surgery for the severe abdominal pains. It was a three hour surgery and I woke up with an NG Tube, a temporary ileostomy and about a 10 inch scar running down my stomach, and what eventually became a fistula.

It would be a few more days before we were told I had cancer.

I still believe I shocked a few people when I walked out of that hospital, and even came back a few weeks laters. I'm sure there were some who believed that I would probably never leave that hospital alive.

Not only did I walk out of that hospital, I'm still alive, 7 years later with a lot of life lived during those years. I believe our goals should always be to prove the doctors wrong. :-)

Roni's Musings and Reporting

2010-10-08T00:06:00.003-04:00

Kevin's last posting (let me just say, what a man!) reminded me of a poem I discovered early on in our Journey:

What Cancer Cannot Do

Cancer is so limited . . .
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the Spirit.
It cannot lessen the power of the resurrection.

~ Anonymous

I posted that same poem to this blog in November 2003. At the time, it was an inspiring ideal. Now I understand that cancer tries to do many of these things, and will, if you give over to it.

Though Kevin's been a bit rawer and more transparent than I, we tend to post here when we've come out on the other side of challenges. But I'd hate to give the impression that we haven't struggled with the "demon" that is cancer and the "personal demons" that rise to the surface when one faces difficulties. But through it all, I've seen Kevin -- and felt myself -- upheld by the foundation of our faith and the loving hands of G-d. Sometimes it has felt as though we were in free fall, but never as though we'd fallen into an abyss. Through grasping (sometimes after grappling with) the truths that G-d has lovingly revealed through scripture, we've always come back to that foundation with fairly soft landings. I am so grateful for the truths that have guided us, and the Hand that has held us. I'm so grateful for support from so many people G-d has used to help us in so many ways. A long-time family friend put it beautifully when he said, " With [Kevin and Roni] we can be only thankful for all of the helping hands--social and medical. With them we rest in Him Who only has unfailing, heavenly hands.”

So, that's the musings part of my posting. Now on to the reporting part.

I realized from some comments we've received that many people equate hospice with very final "deathbed" stage of deterioration. Let me assure you that Kevin is not an invalid. Hospice can be involved early on, as soon as one chooses to discontinue treatment, and that's what we've chosen, in order to enhance Kevin's quality of life. For example, a good hospice will advise on the appropriate amount of activity and exercise to keep the patient strong and limber without taxing their reserve. They may teach therapeutic massage to deal with aches and pains from a more sedentary life. etc. The point is that Kevin is still mobile, still has his wits about him -- though he needs a bit more help with remembering words and editing when he writes than before. He's lost some weight and he sleeps more -- about 40% of a 24 hr. period -- and rests a lot while awake. But he also has moments when he's feeling pretty well and continues to help out with light household chores, runs short errands, takes Elke out, and cracks me up with his quirky wit on a regular basis.

"You Beat This!"

2010-10-07T23:26:00.001-04:00

Now before you all get excited from the title of this post and think that the cancer is gone -- it isn't -- let me tell you why my oncologist told me that the cancer didn't beat me, but that in fact, I beat it.

Those who have been following my blog for awhile will know that part of my original diagnosis is what is referred to as "Signet Ring Cells." It is important to know this because some of the doctors that we have met did not believe us when we told them I had Signet Ring Cells (SRC). One doctor said I probably misunderstood, because if the Oct 2003 diagnosis of SRC was correct, I would not be alive today. A couple of doctors even insisted on doing their own pathology reports to prove me wrong. You see, SRC is the more aggressive of the colorectal cancers; and people diagnosed with it usually don't make a year. As for me, tomorrow will be the 7th year anniversary of when I went to the hospital complaining of severe abdominal pains. Needless to say, for the past 7 years more than one doctor has been stumped as to why I am still alive. It is also needless to say that we believe the reason is answered prayers, aligned with the Will of G-d, and for whatever reason, He has decided to keep me around. Just by staying alive for seven years, I, beat the standard prognosis.

In those 7 years I have had 5 surgeries related to cancer, been septic, had numerous rounds of chemo and 5 weeks of radiation, weeks of recovering from the surgeries, learning to deal with an ileostomy for 9 months, the side effects of the chemo and radiation, countless blood tests, and I can't even remember all of the CT/PET or just CT Scans. So while, yes, I have survived the cancer, it has not been an easy road, and I have the scars to prove it. Both emotionally and physically. Every scar I have is another reminder that I beat whatever this cancer could throw at me.

Let me take this opportunity to say that because of the success of those treatments, I have also had the opportunity to enjoy life. Roni and I have traveled twice to Israel with good friends for the Bar Mitzvah of each of our Rabbi's sons. We've been able to take vacations in Arizona (one of our favorite states), The Bahamas, Jamaica, the Florida Keys, Vermont, a week with Roni's and my parents in Virginia, a week long cruise in Alaska with my family, a week in the Wisconsin Dells with my family and just recently, two amazing weeks in Australia where I was able to reconnect with old friends and show Roni where I grew up during my high school years. And I celebrated my 50th birthday in New York with close friends. So, in continuing to enjoy life, I beat cancer.

I've also been able to help others who have been diagnosed with this disease through our on-line support group and through this blog, and please G-d, may they continue to help others even when I am no longer able to contribute to them. Which brings us to the reason for this post.

Yesterday, Roni and I met with my oncologist. The same person who just 2 weeks ago told us what our options were. She asked if I had made up my mind about what I would like to do. I had made my decision. After much thought and prayer, discussions with Roni, counsel from trusted sources, I had made the decision to forgo any further treatment and start with home hospice care. The doctor understood the decision, and explained how home hospice would work and how things would now progress.

Last night I spoke to my family to let them know of my decision. My sister asked if they gave me an expiration date :-). With a chuckle, I said no. None of us really know how long I have. We believe that with people's prayers and G-d's intervention, I have already lived longer then any of the doctors have thought I likely would. I know people will continue to pray and we believe that G-d will take care of things in His timing. So we are going to leave those details in His hands.

As we were getting ready to leave the appointment yesterday, the doctor looked at me and said (I didn't have a tape recorder on me, so I'm paraphrasing here), "Don't think that this cancer beat you. You have lived longer than anyone would have thought. With all of the treatment you had, you had probably 80% of that time as good quality of life. And with all the people you have helped with your support group and blog, don't think for one minute the cancer has beaten you. In fact, You Beat This." I know that I didn't beat it alone. I had a "band of brothers" to fight beside me (I wrote about my team here), and we believe most of all, G-d fought for me.

Choosing hospice doesn't mean I'm laying down and giving up. I'm expanding my team to include the expertise of hospice care in order to achieve the best possible quality of life I can. We continue to pray for a miracle, and I plan to live each day enjoying life as much as possible. I want to spend time with family and friends. And I will continue to give my support where it is needed, my advice when it is asked for, and my wisdom for what it is worth. :-) That's why I won't be removing the phrase, "So far I'm winning" from the heading of this blog page. G-d is in control, not cancer, and that means that even if G-d does not perform that miracle, cancer still doesn't win!

Dwelling in a Sukkah. Physically and Spiritually.

2010-09-26T22:13:00.000-04:00

I began writing this post at the beginning of the Jewish Festival of Sukkot. (You may also hear it pronounced Succus, which is the Azkenazi Hebrew way of saying it.) "Sukkot" means Booths or Tents. You will also hear it translated as Tabernacles. So the holiday is commonly known as The Feast of Booths or the Feast of Tabernacles. You can find it mentioned in the Bible in Leviticus 23:34.

Sukkot is the plural form of the word sukkah. Holiday observance requires that we build a temporary structure, a sukkah, and dwell in it for 7 days. This does not mean that we are to "live" in our sukkah, spending every waking hour in it. But we are to spend what time we can, sitting in the sukkah, eating in the sukkah, etc. The main point is we are to reflect on what it was like for our ancestors as they traveled through the wilderness, waiting for G-d to bring them into the land he promised them.

After G-d brought us out of Egypt as slaves, He led us to the land that He promised for us. When we got there, twelve men were sent into the land to scope it out. Two came back saying it was a great land and that since G-d had promised it to us, we should go in and take it. The other 10 however did not see it the same way. They saw how good the produce was, but that it was also filled with men who were "giants" in their eyes, and they saw no hope of ever taking the land. And so for their lack of faith, those ten men, and the people that sided with them were not allowed to enter their promised homeland. After that, G-d required all of Children of Israel to wander in the wilderness for 40 years until the generation that did not believe that G-d had the ability to bring them into their land had passed away.

So for 40 years we never had a permanent place that we would be able to call home. We lived in temporary structures. The sukkot (booths, tabernacles, tents), were a reminder that we were not home yet, we were still on our journey to what would be our home. And since our people had been in Egypt for about 400 years, no one knew what "Home" looked like or what it consisted of. Only a couple of men had a glimpse of what our home would be like. All we had to keep us going were what these two men remembered, and what we were told by G-d, that is, it was a land of milk and honey. So while we were travelers, living in tents, our final destination was some place that all but two of us had never seen and we had no idea what was in store for us when we got there.

But, we were given a promise. That promise was that when we got to this land that no one had ever seen, we would be able to stop living like nomads. We would be able to build permanent houses, plant fruits and vegetables, raise livestock, start businesses, etc. We would finally, be Home!

Sukkot is a holiday to remind Jews of our historical wandering. But it also serves as a symbolic reminder to all human beings that while on earth, we are on a constant journey. Even if we find a place to physically call home, spiritually we know that we are only traveling through, on our way to a permanent spiritual home.

Our bodies, are our "sukkot". Our tabernacles, or tents. A place for our spirits to temporarily dwell while we are here on earth in our mortal coil.

The sukkah that we build during this time of the year needs to be recognized as a temporary structure, which means it has no solid foundation. Its frame is made of wood, rods of metal or tubing and it's walls are normally made of some type of cloth or tarp. It would never meet any type of modern building code. And it seems like it is a yearly occurrence that a strong wind, or storm tries to bring your sukkah crashing to the ground. (Sure enough, while I was writing this, a giant thunderstorm moved through the Bronx. What timing!) It's not unusual to have to go out after such a storm and make some necessary repairs to make sure the sukkah will stand for the rest of the holiday.

While on earth, our body (our sukkah) is also subjected to storms, heavy winds, and tempests with the result of testing our structure and seeing if we are strong enough to withstand whatever is thrown at us. Occasionally it is necessary to go in and make some repairs after a "storm". Personally, I have had some parts of the structure broken, and have had my share of repairs. I have had to have some parts completely removed because they had been subjected to "fungus" (cancer). And as more parts are removed, without the capability of replacing them, the sukkah begins to wear down. And sometimes, as the physical structure becomes less stable, the spirit, or the "thing" that dwells in the sukkah, starts to become stronger. We begin to remember that our sukkah is only our "temporary" dwelling to be used while we are on our journey to our final home. It is not meant to be a permanent dwelling, and eventually it will be taken down and we will move into our real home.

How long will our "sukkah" hold out? How long will our journey here on earth last? None of us really know the answer to that. Like the Children of Israel wandering through the wilderness, all we know is that when we are told by G-d to stay, we stay. When we are told by G-d to move, we move.

What will our final home be like? Will it be in a land full of milk and honey? Again like the Children of Israel wandering through the wilderness, we are not given a detailed description. We are just told that when we get there, we will know we are there. We are told by G-d that if we keep His covenant with us, He will lead us there, so our job is to follow Him. Like the Children of Israel, our journey is not easy, and there are trials along the way, but there are also times of joy, and G-d's promise of having a land or home, that will be OUR home. A place where we no longer have to worry about storms, winds, diseases, hunger, fear, etc.

When we get "home", we will then be able to rest, for some of us, cancer-free, and finally "dwell in the house of the Lord forever."

News Update from Roni

2010-09-23T20:23:00.000-04:00

Roni writing, as I'm the one not currently taking pain meds. Kev's working on a new, more reflective, blog entry to be posted in a day or two, so stay tuned.

First the good news. No more panic attacks, thank G-d. We credit prayer and a change in medication schedule. Though when we last met with the pain specialist, he wasn't sure that med fluctuations had that much to do with it, so thanks for the prayers!

Many of you have already heard that because of the increased pain that Kevin had, along with some other symptoms, the docs decided to do a PET scan a month early to see what was going on. Turns out that the new site of pain was from a broken rib! We don't know how it happened, but are guessing that past treatments and/or a sedentary life have left Kevin with brittle bones? As far as what the scan showed about success of macrobeads, When Dr. Smith (doc running the trial) told us the PET scan results, he said he saw a "mixed result", as there were new nodules, but also a tumor had disappeared.

Then last week, while in for blood work, Kevin spoke with Dr. Berman, one of the other doctors working on the macrobead trial. Despite what Dr. Smith had said previously, Dr. Berman indicated that the disease was progressing, and suggested we schedule a consult with Kevin's oncologist, Dr. Alyson Ocean.

We saw Dr. Ocean today, and the bottom line is she said that while Dr. Smith may have a bias towards optimism, the test results indicate that the macrobeads are not working, and the disease is progressing with new nodules and significant growth of one of the tumors. She spoke to us about Kevin's remaining options, basically a review of what she spelled out prior to Kevin's decision to try the macrobeads. If we understood correctly, viable choices boil down to 2 levels of drug therapy or no treatment at all. Kevin has not been a candidate for more surgery since his last surgery with Dr. Loggie. None of the remaining options are curative. Basically, Kevin has a difficult choice to make between:

1. Treating with drug combo Irinotecan + erbitux. This is the most aggressive therapy that Dr. Ocean thinks Kevin is strong enough to tolerate. He has not yet had either drug, so there's no way of knowing if/how he would respond. Response rate (i.e. shrinking tumors or stopping tumor growth) is in the low-20s percentile, with an average life extension of 6 months for those who respond; on average, the drug ceases being effective after 6 months. Most usual side affects are stomach cramps and diarrhea, itchy rash and fatigue. Mouth sores and flu-like achiness have also been reported. There are other drugs that can be taken to help minimize some of the side affects. The challenge would be to find the dose that is effective in treating the tumors without the side affects being too severe.

2. Treating with erbitux only. When effective, this has the same 6-month result as the combo above, but when used alone it is effective only about 11% of the time. Side affects however are much less severe -- mainly the itchy rash and diarrhea. Kevin could opt to try this, and add irinotecan later, if erbitux is found to be affective and tolerated.

3. No treatment -- only palliative care. Rate of expected disease progression not known (especially in Kevin's atypical response to the disease), but life expectancy is months, rather than years. Symptoms (currently pain) could stay the same for some time, or worsen at any time.

Treating Pros -- if effective,
- tumors could shrink, thus reducing pain, thus reducing level of pain meds needed (which have their own side affects/quality of life issues). So net result could be improved quality of life, or at least maintaining current level
- could extend life for 6 months or more

Treating Cons
- odds are greater for not working than for working
- if drug is not effective, side affects would make quality of life worse

In the meantime, Dr. Ocean gave Kevin a prescription for an anti-depressant, he just needs to check with his pain specialist to make sure of no negative interactions with what he's already taking. He may also explore physical therapy to see if strengthening/stretching exercises could relieve some of his muscle pain and/or give him more energy. And we got the name of a licensed social worker that Kevin can talk to, plus a nutritionist that I can consult with.

And we continue to pray. I'm encouraged that Dr. Ocean said that the signet ring cells are still not acting completely like they usually do, in that growth has been less aggressive. Thank God for that, and for the fact that He has given wisdom and guidance every time there's been a decision to make. And we also remember that Kevin has had considerably better outcomes in the past than expected.

Life is still lived one day at a time, and fresh from the reflections of Yom Kippur, we are more determined than ever to make the most of each day. Today I took a vacation day for the first day of Sukkot -- a Biblical sabbath, and we had beautiful weather. After we got back from the doctor's, we enjoyed lunch out in our sukkah on the balcony, Kevin took Elke to the dog park, I got a little rest, and I helped Kevin work on edits to his next post. That's lot's to be grateful for and enjoy.

This coming Saturday evening we are helping to host a progressive Sukkot dinner for our congregation's members and some of their/our friends. First course is at our place, with 30-40 people coming to fill our home with love and laughter. Then we move onto two other Beth El member's homes in the neighborhood. We're looking forward to good food, good music and good company.

Back to the decision Kevin faces. We'd love to hear experiences from fellow PMPers who have been on either drug therapy described above. And as always, we appreciate the prayers of so many who follow our journey. Please pray for wisdom and clarity for Kevin, as he makes this difficult decision. And while you're praying, a miracle would be most welcome.

Roni

P.S. Dr. Ocean, when you read this, send me an email if I got any of the facts wrong!

Panic Attacks

2010-09-11T18:22:00.003-04:00

Awhile ago, I had one of the most draining weeks I have ever had in the past few years. It started with a visit to my "pain" doctor to let him know about a new pain that has been cropping up. This pain is strange because it is not in the same area as the pain I had been experiencing over the past months. It seems to be below the ribcage, and feels like it is more in the abdominal area. I'd even say more like where the left kidney is. The doctor explained that there are nerves in the pelvic region, and when I have waste going through my bowels, it is most likely pressing on these nerves causing the pain. This can happen to anyone, but the tumors and inflammation I have somehow cause the pain to radiate through the left side of my torso causing even more pain in my lower back, left shoulder blade, muscles in the left side my neck, left arm, etc. At times the pain is quite excruciating. But then, it eventually goes away, and when it does, my whole body is exhausted. The narcotics I have been taking to deal with the original pain I was experiencing, slow the digestive process causing constipation, which adds to the problem.

To deal with the constipation, I began eating smaller meals more often and taking Senocot and Colace at night, which has helped me to be able to cut down on the narcotics. While that is a good thing, I found out that cutting back after having all of those narcotics in one's bloodstream, can cause withdrawal symptoms.

In my case, I first experienced extreme fatigue. I had no energy and was yawning like someone who had to stay awake because his life depended on it. Then my mind started playing tricks on me, and I experienced irrational fears. I thought maybe I was becoming dehydrated, and that I would have to go to the hospital for an IV. Then I started believing that if I did that, that was how I would die. I began to believe that this was the end. Fear gripped me and I panicked like I have never panicked before.

The day that the first panic attack set in, Roni came home early from work as she sensed something was going on after speaking with me on the phone. When she got home, she asked if I had taken all of my meds. I told her "no," so the first thing she did was make sure I took the pain meds I needed. After I calmed down a bit, she took the dog out, and I nodded off. When I woke up, I started to feel a bit more normal. Roni had called a couple of my doctors to let them know what was happening. We looked up on the internet what the withdrawal symptoms of Diluadid was, and it sounded like that could be the culprit. Initially, the pain doc said that I had enough narcotics in me, and he didn't think missing a dose of the Diluadid wouldn't have caused the problem. He said this because I also take Oxycontin throughout the day. As the end of the day drew near, I started to feel normal again. But strangely, the next afternoon, at about the same time of the day, I had another panic attack. We spoke with the pain doc again, and this time he said to try taking a Dilaudid an hour or so before I took my 3PM Oxycontin, just to make sure a drop in the narcotics level didn't have something to do with the anxiety. I made it though that day, again, starting to feel somewhat normal by the end of the day.

The next day, again at about 3PM, I started to feel the panic set in, but I was a bit more prepared this time. I had made sure I had taken a Dilaudid before the oxycontin wore off, and even though I still felt like crawling into bed, I decided to take the dog out for a long walk instead. It wasn't easy, and I kept going through the "What if?" scenarios in my mind. But Elke (our dog) and I made it back home after about an hour and a half walk, and even though I was exhausted from the walk, emotionally, I began to feel like I was back to my normal self.

That was probably one of the hardest weeks of my life. The fear of dying was very real, and although it wasn't logical, it made me think about what the cancer was doing. Roni and I had a serious talk about the very real possibility that the trial could fail, and if so, barring a miracle, this cancer could be terminal. It was a wake up call to become more serious about what I want to do with what time I have left in this world, and what I want to accomplish with that time.

Since then, I have been good at keeping on top of the pain, and making sure I take my meds when I am supposed to. I am still working on the "What do I want to accomplish?" question. The reality of what the cancer may do is still there, but the fear of having to deal with it has subsided. I have also come to the realization that my "normal" continues to change. Not always for the better. But just because my "normal" changes does not mean that my life is over. There are still things that bring me joy, things that still make me smile and laugh, things that I still have to take seriously, and things in my life that I am still able to accomplish. Even though I am living with a potentially terminal disease, I still don't know when my life will be over. In the meantime, I have to learn how to make the most of my life now.

Learning how to make the best of my life is a process. A process I continue to ask G-d to help me deal with. So I will continue to live life the best I can. I will continue to share what I have to share. I will continue to help others in ways, that perhaps only I can. I will continue to let others help me in ways, that perhaps they can.

For now, the process continues, and so do I.

Macrobeads - 32 Days Post Op

2010-07-20T19:22:00.008-04:00

So, I imagine a lot of you are wondering how I am doing, and how successful the Macrobead Clinical Trial is going. I'll start with the Macrobeads.

Yesterday I had my 30-day post-procedure appointment, which only consisted of having blood drawn for tumor marker tests, and being examined by a doctor. I am still awaiting results. The first post-op testing I had done was July 1st. Those initial results showed that the CEA did go up to 111, which represents a smaller percentage increase than we were seeing before the surgery, and may be due to inflammation the beads can cause. So the fact that the rate of increase of tumor markers has slowed is encouraging, but the doctor says it takes a couple of months to know for sure if the beads are working.

As for how I’m feeling, I am still experiencing the pain that I had before the surgery. As I may have mentioned before, we believe it is caused by tumor, so we are not surprised that we have not seen any change yet. I am seeing a doctor that is a pain specialist who is treating me with some pretty heavy-duty medications, which are helping to keep the pain at bay. I take long-lasting pain meds twice a day, plus throughout the day, I take pain meds for "break through" pain (when the long lasting meds wear off and the pain starts up, but it is not yet time to take another dose).

I am also taking Ambien CR to help me sleep through the night, which usually helps, but sometimes the pain wakes me up, and I have to take another dose of the "breakthrough" pain meds. At night, I also take an Anti-anxiety drug, which also helps target the pain. The problem with taking all these pain meds is that I am usually sleepy throughout the day. It is not unusual for me to go back to bed to take a nap about 10 AM. The doc gave me some medication to help me stay awake, but I think that drug is causing "dry mouth" which becomes very annoying. I have tried not taking that drug for a few days to see if that is in fact causing the dry mouth, and I'm pretty sure it is.

The pain doc said the first goal is to get the pain under control, then we work on countering the side effects of the narcotics. Hopefully that won't be too far down the road...

So overall, things are going OK, but all that pill-popping serves as a constant reminder that the cancer battle continues.

Pain under control...But still tired

2010-06-20T12:43:00.004-04:00

It is now 7:45 PM, Sunday, June 20th. Two days post op.

I am feeling MUCH better, although still tired. I have also been able to start cutting back on the narcotics to what they should be. I'm guessing that it may take awhile for the effects of the narcotics to start to wear off.

It is still a little tender around the incision area, but I can now get up out of bed, off the couch, etc., without much pain at all. Friday night it was impossible to even get in or out of bed without help, and without extreme pain.

Today, I have taken the dog out for a short walk, took a shower and have had a couple of naps. I am guessing it will take another week or so for things to get back to "normal", whatever that is.

As for finding out if the beads are working or not, I will have to set up a time to start having follow-up tests with the doctors to determine that. In the meantime, I'm just working on getting over the surgery.

Pain still pretty bad

2010-06-18T23:11:00.000-04:00

Well, it is 11pm, just less then 12 hours since my surgery. We are thankful that it was successful and that they were able to insert all the beads they needed to.

However, the pain from the incision area has been excruciating. I have been taking narcotics pretty regularly to try and get on top of the pain, and only by taking more than is prescriped is it beginning to work.

I have a feeling I have a long restless night ahead of me.

Please keep me in your prayers, that this pain will quickly subside.

Thank you.

Kevin

- Posted using BlogPress from my iPhone

Surgery went well

2010-06-18T12:39:00.001-04:00

Kev's surgery was succesful with no complications. Some more info on
the blog.

Roni
-----------
Sent from my iPhone.

Surgery went well

2010-06-18T12:35:00.000-04:00

Roni here

The doctor just came out to inform me that the procedure went well. They were able to insert all the macrobeads. They has to break through some filmy adhesions, but then were able to open up a nice large pocket for the beads to do their thing.

Kev's still waking up in recovery, and i havent seen him yet. He will be discharged today and well go back across the street to the guest quarters where we will spend the night. The doc will come by in the morning to see him before we head home.

Kev or I will post later to report on how the recovery is going.

Thanks for all the prayers and notes of encouragement. Now praying that these beads will cause the cancer to stop growing and even shrink existing tumors.

Special thanks to our friend Scott who lives a few blocks from the hospital and came to be with us. It was good having the company.

Surgery is Scheduled

2010-06-17T18:21:00.004-04:00

I arrived at the Helmsley Medical Tower Guest Suites at about 5:45 this evening. Even though the hospital is only a few miles from where we live, I guess they want to make sure we arrive in time, so the Rogosin Institute is putting us up just a couple of blocks away.

Tonight, Roni and I will go out for a nice dinner, and maybe a cigar and drinks, before our big day tomorrow.

Tomorrow (Friday, June 18), I have to be at the hospital at 8AM, and surgery will be at 9:30 AM. As long as everything goes according to plan, the surgery should take an hour or less. Roni or I will post after the surgery to let you know how it went.

While I am nervous about another surgery, I am more nervous about the possibility that there may not be enough room in the abdomen for all of the macrobeads they need to install. If there is not enough room, which they won't know until the surgery, they may say that I am not a candidate for the trial, which means the only options I have are to do nothing, or chemo.

Please pray that there is enough room for the beads, and that they are effective.

As always, thank you all for your prayers.

Kevin

Pain Control, Macrobeads & Sleep

2010-06-08T22:02:00.007-04:00

PAIN CONTROL
Monday afternoon I met with a pain specialist to try to figure out what is causing the pain, and what we can do about it. According to the PET/CT scan I had, there is tumor growing near the kidneys, and he believes this is what is causing the pain. Unfortunately, the only thing that will make the pain go away permanently is for the tumor to shrink and/or disappear.

For now, the only way to treat it, is with narcotics. Yippee.

I take oxycontin twice a day for long term pain relief, and take dilaudid for "break through" pain, i.e. when the oxycontin wears off, but it is still too soon to take another dose.

The doctor said the first thing is to get the pain under control, then we will work on getting to the point where the narcotics are not having the "narcotic" effect on me. I hope it is soon because I really don't like the feeling of being on these drugs. I am tired of being either in pain, or doped up on narcotics. My quality of life has taken a big hit as it is hard to know how I will be feeling, and therefore hard to make plans for anything social. I would love to be able to plan on seeing a movie, spending time with friends, or going on a date with my wife, but with my current situation, I just can't do that. The pain and drugs has also made it impossible for me to even go for a ride on the Harley.

MACROBEADS
Wednesday, I saw the surgeon who will be doing the macrobead insertions. He is concerned that there may not be enough room, due to scar tissue from previous surgeries, for all of the beads that need to be inserted, but won't know for sure until he does the surgery. So we go ahead with the surgery, which will be June 18th. 6 days before my 51st birthday.

SLEEP
Besides the pain, another problem I have had was getting a full nights sleep. When I went to bed, I would take an Ambien and a pain med, which helps me get to sleep, but then after about 4 - 5 hours, I would wake up in pain, and have to get up to take another pain med. I would be up for an hour or so before being able to get back to sleep. This means that I was usually exhausted all day long. So along with the increased doses for pain meds, the "pain" doctor also gave me a prescription for Ambien CR and for the first time in a LONG time, I have been able o get a full nights sleep. Even though I am still sleepy throughout the day, at least now I have a bit more energy to get things done.

Right now, one of my biggest fears is that this will be my life going forward. Either in pain, or on pain meds. We continue to pray that this will change. We pray for either for a miracle, or that the beads will be effective and help give me my quality of life back. We know that there are many others praying for the same thing, and we appreciate all of those prayers.

Australia - Part 3

2010-06-02T17:08:00.002-04:00

From Airlie Beach, we headed north towards Townsville, then headed west to Charters Towers.

Charters Towers is the first place we lived when we moved to Australia in 1973.

The first night we were there, we had a mini reunion with some of my class mates from Charters Towers State High School. It was great seeing some of the guys I used to hang out with, and one (Terry Wise), even brought a picture of him and me taken about 35 years ago. The evening was organized by Debbie Bray, who was in the same grade as me, but in a different class, and Geoff Winstanley, who I used to work with at Aridas after school taking out the trash and cleaning the windows.

The first full day we were in Charters Towers we visited our old house, which was really WAY TOO small for a family of five. Walked down main street (Gill Street), which only took about 15 minutes or so, and seeing the church my dad pastored, which is now an architect business. We also saw Tania Marie Ault, who is an Aborigine artist. She presented us with the painting, "Freedom of Spirit" which I mentioned in an earlier post. That evening we had tea (dinner) with John and Robyn Lingard, old friends from when we used to live there.

Another highlight of that part of the trip is showing Roni where we used to go swimming and camping on the Burdekin River, which now has a sign warning about crocs. I was surprised to see that because we never had crocs back in the 70s.

It was a good time seeing the old outback town, and meeting old friends again.

Australia - Part 2

2010-06-02T16:56:00.002-04:00

We left Adrian & Margaret near Rockhampton, and from there we drove to Airlie Beach, near the Whitsunday Islands.

Along the way, we stopped at a small town called Marlboro for Aussie burgers and Sarsparilla. I had told Roni how Australians made hamburgers, but we had not had a chance to try one until then. Some of the differences is that they put cucumber and beetroots and carmalized onions on their burgers. I was never crazy about the beets, but Roni loved them. We also had Sarsparilla, one of my favourite drinks when I lived there.

One day at Airlie Beach, we took a boat tour out to sea part of the Great Barrier Reef and the Whitsunday Islands. I had never seen them before, so it was a new adventure for me as well. The Whitsunday Islands are a national preserve, so most of the beaches and islands are uninhabited. Roni got to do some snorkeling while I took the opportunity to relax on the boat.

The second day we were there, our trip to the outer reef was cancelled so we took the opportunity to relax and see some of the town.

From our lodging, we saw Cockatoos flyinf around in the wild. From there, we headed to Charters Towers.

Australia - Part 1

2010-06-02T15:27:00.004-04:00

As you may know, last month, Roni and I spent two weeks in Australia. I used to live there from 1973 to 1978, and spent my entire high school years there.

We arrived in Brisbane, where we met and spent the first 5 days with Adrian and Margaret. Adrian was my best friend in Margate. As a matter of fact, one of the reasons I did so poorly in grade 12 is because Adrian and I would often leave school after lunch and go hang out at his house, or down by the beach. For my parents sake, I am saying that it was always Adrian's idea (sorry Adrian.) :-)

One of the amazing things is that after 30-some years, when we met again, it was like we had continued to be mates the entire time, and I remembered why I always liked hanging out with him. Adrian and Margaret showed us a great time and were fantastic tour guides. Even though Roni had never met them before, all four of us got along so well it was as if we knew each other our entire lives. We are hoping that someday soon they will come visit us in New York so we can show them American hospitality.

Some of the highlights of hanging with Adrian & Margaret is visiting the Australia Zoo, started by Steve (Crikey!) Irwin. Seeing the Glass House Mountains. Camping at Borumba Dam. Driving along deserted beaches for miles and miles. And I mean literally driving ON the beach! And getting together with friends from high school and the church we used to go when we lived there in the mid 70s. We also had meat pies and introduced Roni to Tim Tams, Lamingtons and ANZAC biscuits.

Thank you Adrian and Margaret for making our trip even more special.

Clinical Trial Consult Went Well

2010-06-02T01:47:00.003-04:00

Roni and I met with Dr. Smith, who is running the clinical trial here in NYC. He said that after looking over all of my test results, everything looks good for proceeding with the macrobeads. All of my tests came back fine. The CEA did go up again, but that's not surprising as we do know there is still tumor, and it is still growing.

The only bad news, which isn't really "bad", is that I will not be able to have the macrobead surgery this Friday. We were hoping I would be able to have it, to get it over and done with, but the surgeon is not available this week, and the OR is not available next. So surgery is now planned for Friday, June 18th.

Since we live in the Bronx, they will want us to stay in the Helmsley Towers, near the hospital, the night before the surgery, because the surgery is done early in the morning. They said they will also want us to stay the night after "just in case". The good news here is that all of that is paid for by the clinical trial. No out of pocket expenses for us at all.

Physically, I am doing OK, but I still have this pain in my left ribs. It seems to be getitng worse. The pain seems to begin in the left ribs, but it radiates out to my lower back, left arm, shoulder, etc. The PET/CT scan showed some tumor in that area, near the kidneys, so we are assuming that is what is causing the pain. The docs have prescribed Oxycontin and Oxycodone (Percocet) to help with the pain. The Oxycontin is supposed to last 12 hours, but it only lasts half that, if I'm lucky. The Oxycodone helps take up the slack of the Oxycontin, but after a few hours, that wears off too. So now it seems I am either in pain, or knocked out with narcotics. I am seeing a doctor who specializes in dealing with pain on Monday, June 7th, so I am hoping he can get to the bottom of this, help alleviate the pain, and do it without me being doped up on drugs.

Other doctor appointments I have coming up is one with the doctor who did the radiation in Jan/Feb of this year. I see him tomorrow morning, at which time I will let him know the radiation did no good whatsoever. And next Wednesday, I meet with the surgeon who will be doing the macrobeads insertion. It seems like my life revolves around medical tests and doctors. I guess being part of a clinical trial, I better get used to that.

Well, that's the medical news for now. As things progress, we'll keep you updated.

Kevin

"Funny, You Don't Look Jewish"

2010-05-30T17:41:00.011-04:00

Having the name, Kevin Patrick Kersey (yes, my middle name is Patrick), a good English/Irish name, usually means I have to explain to someone how I can be Jewish. And no, it's not through conversion.

According to Jewish Law (Halakhah), Jewishness is passed down through the mother. My maternal grandmother (Sarah Zitnick) was born into a Jewish home. Both her parents were Jews from the Ukraine. They came to America in the early 1900s. My grandmother was born in Chicago, which made her the first American in her family. She had an older brother, my Uncle Al, who was born in the Ukraine.

While the family was observant when they came to America, it did not last long. The story I heard was that they sent for my great-great-grandmother to come to America. When she got here, she was refused entry because she had an eye infection (probably something like "pink eye") and had to go back to the Ukraine. Either on the way back, or shortly after she got back, she died. This was hard on my great-grandmother spiritually and it was because of this she declared, "There is no G-d." From then on, the family, while keeping Jewish traditions, would certainly not be considered very observant.

An event happened when my grandmother Sarah was a little girl that sparked her curiosity about religion. It was around Hannukah/Christmas time and she brought something related to Hannukah for Show & Tell. Afterward, one of her classmates came up to her, slapped her, and said, "You killed Jesus." This stunned my grandmother because she didn't know who Jesus was, and she was pretty sure she hadn't killed him. She went home and asked her mother who Jesus was. Her mother slapped her and said, "Never mention that name in this house again." Sarah was slapped twice for someone she didn't know, had never met, and certainly never killed. But this did make her start to wonder who this "Jesus" person was.

After high school, she met and married my grandfather, Ralph Wooding, who was not Jewish. This did bother some in her family, and I heard that some of her family would not even walk on the same side of the street with her. But since she was not religious, marrying a gentile was not a big deal for her and her immediate family. Sarah and Ralph went on to have three children, the oldest of which was my mother.

When my mom was about 13 or so, my grandfather decided it was time they start going to church. There was a small church down the street from them, and within a few months, they had all become believers. At this time, in the 1940s, when a Jew came to believe that Jesus was the Jewish Messiah, it was accepted practice that they forsake their Jewish heritage and culture and culturally become Christian. And so my mother and her family all became "Christian", even though according to Jewish law, they were still Jewish by birth (except for my grandfather). And because my mother is Jewish by birth, then so am I (and my siblings).

Now for my dad. My father, Earl Kersey was born in a small town in Oklahoma called Oilton. He joined the Navy in WWII and served in the South Pacific. He was hoping to make the Navy a career, but contracted TB and was given a medical discharge. He felt G-d was calling him into the ministry as a Southern Baptist pastor. For some reason, he had always had a love for the Jewish people, even to the point that he prayed that G-d would give him a Jewish wife. In the 1950s, he went to a small Baptist college in Southern California, where he met... you guessed it, my mom. My mom had decided to go to the college because her boyfriend at the time said he was going to go there. He never did, but she met my dad there, and they were the first couple to be married in the chapel of California Baptist College.

While her Jewishness was never a big deal for my mom, it was for my dad. When I was in my early twenties, my dad told me about a man named Zola Levitt, and a movement called "Hebrew Christianity". This sparked something in me to learn more about my Jewish heritage. In my studies, I learned of Messianic Judaism, which had evolved out of Hebrew Christianity.

Hebrew Christianity began in the 1800s as Christians of Jewish birth began to believe that accepting Jesus did not mean they had to deny their Jewishness, and that believing that Jesus was the Jewish Messiah was in fact, a very "Jewish" thing to do. Messianic Jews took that even further and believed that not only was it Jewish to believe in Jesus, but that it was incumbent upon them to retain Jewish religious traditions and cultural identity. They started referring to Jesus by his Hebrew name, Yeshua.

As I learned more about Messianic Judaism, I felt this was the path I should take. Even though I was raised "Christian", I believed it was the right thing for me to reclaim my Jewish heritage and began living as a Jew. Instead of observing Christmas, Easter, etc., I now began observing Passover, Rosh haShana, Yom Kippur and the other Jewish holidays.

I met my wife (Roni) at a Messianic conference and we were married under the "chuppah"at a Messianic synagogue. We go to Shul (synagogue) Saturday mornings and observe the Jewish holidays. When I was in my 40s, I finally had my Bar Mitzvah.

And that is why a man named Kevin Patrick Kersey is very much a Jew. I know some in the Jewish community will not accept this, but my beliefs are between me and G-d, not me and the Rabbis, and they are the result of extensive study. And that is why, even though my name is not Jewish, I am a Jew.

If you would like to understand the foundations for my beliefs, I would encourage you to read some position papers that my Rabbi has written. You can find them here:

http://bethelnyc.org/category/theology

Clinical Trial Testing - Part II

2010-05-28T11:31:00.003-04:00

On Wednesday, I had my second round of tests. First a chest X-ray, followed up by a PET/CT scan. Of course I had to drink some barrium, but they had this chocolate flavoured stuff that wasn't horrible. It wasn't great, but it wasn't horrible. Of course it did have the "side effects" of normal, yucky tasting barrium, but that's another story.

So all the tests are done. We are now just waiting to meet with the doctor to discuss results. We also need to meet with the doctor who will be doing the bead insertions. If all that goes well, next week at this time, I should be full of macrobeads, and resting comfortably in a hospital bed.

Clinical Trial Testing - Part 1

2010-05-24T18:20:00.002-04:00

Today I had my first round of testing to determine if I will be eligible for the Macrobead Clinical Trial.

First I had my blood drawn. I think they took about 7 pints of blood. And I never exaggerate.

They also took nasal and saliva swabs. Did a EKG. Tested skin for any allergic reactions to the mouse cells, and noted all of the vitals (weight, height, temp, blood pressure, etc.)

Next steps will be a chest x-ray and CT/PET scan on Wednesday.

Hopefully we will know by the end of the week what the results are, and if I will be a candidate for the trial.

Clinical Trial Update

2010-05-21T16:51:00.003-04:00

Today I met with the doctor who is leading the clinical trial I have mentioned before on this blog. He believes I am a candidate for the trial and so we are moving on to the next steps.

Next week I will have my blood drawn for lab work, and for a chest x-ray and a CT/PET scan. Next I will meet with the surgeon who will be doing the macrobeads insertion. If everything looks good, I will probably have the surgery on June 4th.

I don't know if I mentioned this before, but for the past couple of months, I have been having a pain in my left ribs. It seems the pain is hitting some nerves, so the pain radiates through my lower back, left shoulder and arm. It has been pretty consistent and steady for awhile now. Sometimes tolerable, sometime excruciating. My oncologist prescribed Oxyocodone for me, which helps a little, but wears off after a few hours. Plus I'm not crazy about taking all of those drugs, but it's the only thing that gives me some relief. The pain also keeps me up at night, which means I need to take Ambien to help me sleep. All of that did effect me on our trip to Australia, but we still had a great trip, and I'll talk about that trip in another post.

As the clinical trial progresses, I'll keep you all updated as to how things go.

Kevin

Freedom of Spirit

2010-05-18T09:33:00.007-04:00

As most, or some of you should know by now, Roni and I spent two weeks in Australia. We started in Brisbane, and after driving about 3000 Kms (you can do the math), we ended up in Cairns.

One of our stops was in Charters Towers Australia, where I lived from 1973 to 1976. In Charters Towers, we met an Aborigine artist, who remembers my family from when we used to live there. She was only a little girl at the time, so I don't remember her, but we have become Facebook friends and have kept in touch that way for the past year or so.

While visiting Tania, she presented Roni and me with a painting she did. One of the things with Aborigine paintings, is that they always come with a "story", and Tania always seems to find the story of her paintings after she paints them. She said she did ours in about 3 days, and after finishing it, she "saw" the story in it.

Below is the painting, and the story:

Freedom of Spirit – Berrenge Nahn (pronounced: Berren-gay Narn)

For Kevin and Roni Kersey

This painting is a spiritual representation of the sense of peace and freedom you derive from riding your motorcycle.

The central and inner circles represent the journey.

The two dots in each corner, represent the 2 of you as you ride along together.

The smaller circles at the bottom and at the top represent the wheels and the journey to and from your destination.

The smaller dots dark brown and yellow ochre represent all the beauty that you have witnessed as you look in every direction, as far as the eye can see.

The blue background represents fresh air and wind “May all your travels happen beneath clear blue skies.”

The yellow dots represent the sun on your face.

The white dots signify safety and security.

The dark brown around the outer edges represent the road under your wheels.

The three inner red circles represent the sun set at the end of the day.

The black and orange dots represent your beloved Harley Davidson.

Artist’s Name: Tania Ault

Lore Name: Dillinga (Silver Brogla)

Clan Name: Mgulakai Pronounced: Mul-a-ky (Sun Light People)

Tribe: Kudjala/Gudjal

Home Town: Charters Towers, North Queensland, Australia

Macrobeads - Part II

2010-04-14T17:53:00.002-04:00

If I am accepted into the clinical trial, the items you see on the left are the macrobeads that will be inserted laproscopically into my abdomen. The doc said they will use a few hundred of them.

We spent about 2 hours this afternoon with the doctor and person working on this project and it sounds fascinating. Fortunately there is no big rush, so we have time to process, pray and enjoy our vacation.

We'll keep you updated on how things proceed.

Kevin

Macrobeads

2010-04-06T08:30:00.005-04:00

Yesterday, Roni and I went to see another oncologist to get a second opinion about doing more chemo. She pretty much told us what we expected to hear, that it was up to me when to start. There were benefits to starting before symptoms appear, but that there was no need to start right away. She also concurred that the chemo regimen that Dr. Loggie and Dr. Ratner suggested was the right way to go.

Then, she gave us another suggestion that sounded worthwhile to explore. There is a clinical trial being done by The Rogosin Institute where macrobeads containing mouse kidney cancer cells are implanted into the abdominal cavity as a biological treatment. They are implanted during an laproscopic surgical procedure, so the recovery shouldn't be that bad. The good thing is that since this is NOT chemo, there are no side major side effects. The only side effect that she mentioned was an elevated temperature because your body is working harder to fight off the foreign objects.

You can read more about the trial here:

http://clinicaltrials.gov/ct2/show/NCT00283075

I have to make an appointment to meet with the doctor doing the study to find out if I'm a candidate, but if I am, it's certainly something worth considering. When I know more, I'll let you know.

Until then, Roni and I continue to get excited about and plan for our two weeks vacation in Australia. And no, I am not going to eat any Vegemite.

Why I Ride

2010-04-01T14:41:00.004-04:00

When we met with my oncologist last week, and discussed starting chemo again, he made an "aside" comment and said, "Stay off the bike." I didn't say it out loud, but the thought that went though my mind was, "Yeah... that's not going to happen."

I think some doctors think it is their job to keep you alive as long as possible, regardless of your desire to live life. While I respect what he meant, that is one piece of advice I am not going to take. Let me tell you why...

I ride because it makes me feel free.

I ride because instead of being surrounded by metal and glass, I am surrounded by nature.

I ride because I can smell the fresh air. Feel the wind in my face. Feel the warmth of the sunshine.

I ride because I have an unobstructed view of birds flying. Of deer and geese on the side of the road. Of trees, grass and wild flowers. Of a beautiful sunset.

I ride because of the camaraderie of other bikers. Of being able to strike up a conversation with a total stranger who understands without having to have it explained.

I ride for the simple joy of giving the "biker wave" to fellow bikers going in the opposite direction and being given the "wave" back.

I ride because I love seeing the smile on little kids faces as they look at me and wave frantically to get my attention.

I ride for the adventure. For the joy it gives me.

I ride to see new places. Small towns. Creeks and rivers. Forests and trees. Open plains.

I ride because in a strange way, it makes me feel nearer to G-d.

I ride to feel alive.

For some people, an explanation of why I ride is impossible to comprehend. For those who ride, an explanation isn't necessary.

Hope and Reality

2010-03-16T09:22:00.004-04:00

It's a beautiful day here in NYC. About 60 degrees and the sun is shining. Elke threw up this morning, so instead of going for a ride, I'm staying home with her to make sure she is OK. And I'm taking this opportunity to sit on the balcony and enjoy the great weather.

So, getting back to the title, "Hope and Reality".

I was going to call this "Hope vs. Reality", but I think they often coincide nicely with each other.

Hope - When one is told they have cancer, different things run through their minds. One is "Oh my G-d, I'm going to die." Another is, "I'm going to beat this thing." As cancer patients, we hope that we won't become one of the cancer death statistics. We hope that we will be one of the people that can say, "I beat cancer!" or "I've been cancer free for [insert number here] years." We hope we won't have to do chemo, but if we do, we hope it will be effective. Whenever we have tests, we always hope to hear the doctor say, "I have good news..."

We base this hope on different things. We base our hope on our belief that G-d can heal us. We base our hope on modern medicine and the wisdom of our doctors to do what is best. Sometimes we base our hope on sheer luck. For many, their hope is realized.

And for many, their reality does not measure up to their hope.

For many cancer patients, me included, the reality is that cancer is a killer. It robs one of time, health, family, dreams...

Roni and I got hit with the big "reality club" when we spoke to the doctor and he said "It looks like the signet ring cells (the agressive cancer cells) are starting to act like signet ring cells." Up till then, we were hoping the radiation I had was successful and that I would be able to have another surgery to remove the remaining two tumors. The reality was that the cancer had spread to the lungs, was starting to grow in the liver, recurred in the splenic bed and the tumor on the mesantery (sp?) grew. So now we deal with the reality that, barring a miracle, this cancer is going to continue to progress and be the thing that kills me.

As our reality changed, so does our hope. We continue to hope for a miracle, but make plans in case that doesn't happen. We hope that it is a long time before any symptoms appear that would diminish my quality of life. We hope that we can continue to share adventures, like going to Australia, for a long time yet.

Among the many things we have learned since starting this journey, is that our hopes and realities often change.

There is one thing that we have always hoped for, and has been a constant reality, and that is G-d has been with us through all of this. This doesn't mean that we have always leaned on Him. It doesn't mean we have always felt his presence. It doesn't mean we have always been happy with the path He has led us down. But looking back, we can see that He has been by our sides. He has given us the strength when we didn't think we could go on. He has brought people into our lives who have shown us what courage in the face of death looks like. He has brought friends who have been with us, and if nonthing else, just agreed with us that cancer sucks.

G-d hasn't always brought us everything we wanted, but He has brought us everything we need. One of our hopes now is that we continue to see the reality of G-d in our lives.

Good News and Bad News

2010-03-11T19:30:00.005-05:00

Unfortunately, the Bad News is badder than the Good News is gooder.

First the good news. I don't have to have another surgery. No GoLytely. No IVs. No NG tubes. No drains. No "other things" that makes surgery and recovery, shall we say, unpleasant.

Now the bad news.We heard back from the doctor in Omaha concerning my recent CT scan and it looks like there are new spots of cancer. 2 in the lungs. Recurrence in the splenic bed (where my spleen used to be), and the tumor on the mesantary is enlarged. That means that the treatment that I had before, both the chemo and the radiation didn't do a lot of good. Probably the thing that hit us the hardest was when the doctor said the Signet Ring cells were starting to act like Signet Ring cells. For those of you that don't know, Signet Ring cells are the most aggressive cells of PMP. I have had them from the beginning (over 6 years ago), and the doctors have been amazed that I was still around. That means that for some reason, they weren't acting like the normally do. But, now they are.

So, with the new tumors, surgery isn't really an option as the doctor would not be able to do a complete cydoreduction (i.e. remove all the tumor). This leaves us with two options. 1) Do nothing and just watch and wait. Enjoy life and try to get in as much "living" as possible before the symptoms start becoming too bad. Or 2) try more chemotherapy and biological agents. There is one "cocktail" I have not had which is a combination of Irinotecan (chemo) and Erbitux (bilogical - not chemo), which may help keep the tumors at bay. We know they will not kill the cancer, all we would be able to hope for is that it would keep the cancer from growing. However, we would have no idea how long it would be effective. Also, we don't know how it would effect my quality of life. Would it drain my energy? Would it keep me from being able to travel, or ride my Harley? If so, would it be worth it to go through all of that just to be "house ridden" for who knows how long?

Lots of questions, not many answers right now.

The news hit us both pretty hard, especially as it was the news that we were hoping NOT to get.

Roni and I have been married for over 18 years, and we often talked about visiting Australia for our 20th anniversary so I could show Roni where I lived over there. We are currently considering making that trip this year. Maybe in April or May. If we go, we will fly to Brisbane and rent a car and drive north to Charters Towers. It would be good to see some of my friends from my high school days, and see how much things have changed, or stayed the same since I left. If we make the trip, we will be sure to keep everyone updated, and will be sure to take A LOT of pictures.

I am sorry to even have to bring you this news about my cancer, but knew eventually I would have to post something like this. We appreciate your prayers and know that G-d will be with us during this leg of the journey as He has been all along. We don't know what the future holds, but we do know who holds the future.

I'll write more later, but for now, at least we have one more day...

No News is... No News

2010-03-09T16:07:00.002-05:00

Well, as you know from the last post, our meeting with Dr. Loggie was canceled. I went ahead and got my CT scan here in NYC and had the results sent to Omaha. We were hoping that we would hear back from Dr. Loggie yesterday, but for some reason he didn't call. So, we still don't know what the results of the CT scan is, and what our next steps will be.

Yes, it is very frustrating.

If surgery is in the future, it is scheduled for March 25, which is just over two weeks away. That means if we find out that is the option, we only have a couple of weeks to arange a dog sitter for Elke, family leave for Roni and everything else we need to do for a hospital stay in Omaha.

Again, when we learn what is going on, I'll let you all know.

Kevin

Appt. with Dr. Loggie Cancelled

2010-02-28T11:12:00.002-05:00

Well, we will not be going to Omaha this week to see Dr. Loggie. He has some personal things to take care of, so our appt. with him has been canceled. Instead of going to Omaha to get a CT scan, I will be getting it here in NYC, then send the report and CD to Dr. Loggie for him to look at. He will then let us know what he recommends, which could be to do nothing because the radiation didn't help that much. Do nothing because the radiation worked great and nothing needs to be done. Or, come to Omaha for another surgery to remove the existing tumors. If it's the last choice, we already have a tentative date for the surgery, which will be March 25th.

So, it looks like another week or so of waiting to found out what lies ahead...

When we find out, we'll let you all know.

Kevin

One More Week

2010-01-30T10:15:00.002-05:00

Yesterday was my 18th day of radiation and chemo. That means I have 6 more treatments. On Thursday, the doc said I can double up next Friday to get everything out of the way, and be finished. It'll be on heck of day, but I think that is what I am going to do. So next Friday I'll go in for radiation in the morning, then again at night. Fin.

With that out of the way, the next thing will be a trip to Omaha for a followup consult with Dr. Loggie. We will be leaving LGA on Mar 2, staying overnight in Omaha, then I have to be at the hospital at 7 AM to check in and start drinking my barium (blech). CT scan will be at 9 AM, and then I'll see Dr. Loggie at 10 AM. Hopefully we can meet Kat for lunch, then it will be off to the airport to catch our flight home. Another whirlwind trip.

If Dr. Loggie says he wants to proceed with another surgery, then we will probably head back there in three or four weeks for that. I'm still hoping he'll say another surgery isn't necessary...

As for how I'm doing, the chemo and radiation is making me exhausted. I'll be glad to get this over and done with.

That's it for now. Thank you all again for your thoughts, prayers, good will, etc.

Kevin

Over The Half Way Point

2010-01-24T19:33:00.002-05:00

Just wanted to let everyone know that I am officially over the half way mark on my radiation/chemo treatment. Whoo Hoo.

Tomorrow (Monday - 1/25) will be treatment #14. With a total of 24, that will mean after tomorrow, I will have to go only 10 more times. I won't be sad at all to say "adios" to that place.

The treatment themselves aren't that bad. I lay down with my hands over my head. They line be up (using tattoos and targets drawn on my stomach and sides), then rotate the radiation machine at seven different angles to zap me. That way the tumors are getting over 100% of radiation, but since it is hitting me at seven points, my skin is not getting burned.

I am also taking Xeloda, an oral form of 5FU chemo. No horrible side effects, but in conjunction with the radiation, it is making me really tired. I have the weekends off (no radiation or chemo), so by Monday I start to feel somewhat normal, and then by the end of the week, I feel pretty crummy.

So, you might want to know if this is being effective. Honestly, I have no idea. I had my tumor markers taken right before I started the treatment, and I am sad to say, they jumped pretty dramatically since last time. My CEA (normal is between 0 - 2.5) went from about 7.6 to about 21 before treatment. I had them taken again last Wednesday, and the CEA is now at 29.3. Quite a jump from just a couple of months ago. The CA 19-9 went from 40 a couple to months ago to 56 before the radiation treatment started to 65 from last Wed. To say the rise is disconcerting is an understatement. I'm not sure what would cause the quick jump, besides tumor growth that is.

So, apart from all of that, I am doing relatively well. Tired a lot, but I am getting some exercise with walking Elke. When it's nice out, I take her to the dog park so she can play with other dogs, which helps tire her out.

After the radiation and chemo, we will head back to Omaha to meet with Dr. Loggie. I'll get another CT scan to determine if the treatments did any good, then he will decide if it is worth doing another surgery to try and get the remaining tumors. I would love it if he said something along the lines of "The radiation was more successful than we thought! Looks like the tumor is dead and we don't have to do any surgery." That would be sweet. The other possibility is he will say something like, "The radiation was successful, and has shrunk the tumor enough so I can go in and remove them." The worse thing that he might say is, "Hmmm... doesn't look like the radiation did any good at all. Not much else we can do now but continue to just wait and see..." That would suck.

That's it for now. Your thoughts and prayers are, as always, appreciated.

Kevin

HIPEC Procedure to Be Profiled on TV Tonight

2010-01-21T12:12:00.002-05:00

Roni here.

Tonight's airing of Grey's Anatomy will be including in its story line the HIPEC (heated chemo wash) procedure that Kevin had in 2004, which saved his life.

This exposure is very exciting to us, as too many in the medical and insurance communities still say HIPEC is experimental, though it has meant the difference between life and death for so many with peritoneal/appendix cancers, and is now being explored for other types of cancer.

I hope that this brings increased awareness that results in better survival rates for many who are not aware that this procedure is an option for them.

The Fun Starts Again...

2010-01-03T21:43:00.004-05:00

Yep, it's that time again. Tomorrow I go see my oncologist for a quick checkup, and tumor markers. Then Tuesday, it's time for my first radiation treatment. I'm a little nervous, but have been told that the side effects should be minimal. That's what I'm hoping.

The radiation treatments will be 5 days a week for 5 weeks. Supposedly it will only be about 20 - 30 minutes from start to finish. I'll kep you updated as things progress.

On a positive note, Roni and I had a great time with my family in OR during the Christmas holiday. We had enough miles (had to buy a few) to fly first class, which for tall people like us, made the cross country trip much more comfortable.

We left Elke with a friend in Philly who took great care of her (thanks Keri). And we were very glad to see her after a week. She was very glad to see us too. :-) We sure did miss that little nudnik.

Testing

2009-12-04T18:15:00.001-05:00

Being the geek that I am, I am trying out the BlogPress app for my iPhone to post to my blog.

Kevin

- Posted using BlogPress from my iPhone

I Got Me Some Tattoos

2009-12-02T05:10:00.002-05:00

No, no Harley tattoos. No Air Force tattoos. None that say "Mom", or "I heart Roni".

Just 5 simple dots that show the radiologists where to place me when it's time for radiation.

My radiation treatments start Jan 5th, and my last one will be Feb 8th. I'll be having them 5 days a week, for 5 weeks.

And the bad news is, the Doc tells me it's not going to make me bigger and stronger like in the movies from the 50s and 60s. Bummer.

Radiation, Chemo and Another Surgery

2009-11-21T01:27:00.002-05:00

Just a quick update. I have talked to my oncologist and a radiation oncologist, and have decided to go for the radiation and chemo treatment, followed by another surgery.

Barring a miracle, this is really my only shot to beat this once and for all.

I go in for a planning session on Dec 1st. I'll get a CT scan, sans contrast (yippee), and tattooed where I am going to get hit with the radiation.

The treatments will be 5 days a week, for 5 weeks. As we are going to OR for a week to see my family during the Christmas holidays, I won't be able to start the radiation until we get back. So my first day of radiation will be Jan 5th (the doctor who will be doing the radiation does not work on Mondays). This means I should be finished the first week of Feb.

I will also be taking Xeloda, an oral form of 5FU chemo. I have taken this before and it is fairly tolerable. This time I will only be taking it the days I get radiation, so that might make it a bit easier. Other times I took it for 2 weeks straight, then had a week off. Oh, and this time I will also be taking a lower dose.

I am hoping that 6 to 7 weeks after the radiation, providing it did what we are hoping it does, I will go in for what we are praying will be my 5th and last surgery to remove the tumors.

One thing I learned from watching movies made in the 50s and 60s, is that getting hit with radiation can make you bigger and stronger. I'm hoping that's the case with me. :-)

As things proceed, we'll keep you updated.

Kevin The Roentgenizer

I'm tired of being 1 in a Million

2009-11-05T20:44:00.010-05:00

So it's not enough that I have to have a rare form of cancer, but I also have to have a case that does not act like it should. Part of that is good, part of that isn't.

Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.

The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.

During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.

So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.

Yes, that means another surgery. :-(

Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.

Here are the choices.

1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.

2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.

The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.

3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.

Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.

It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.

Your prayers for guidance and wisdom are greatly appreciated.

Kevin

Six Years Ago Today...

2009-10-09T16:15:00.002-04:00

On Oct 9th, 2003, I was taken into the OR at St. Lukes Roosevelt Hospital for emergency surgery. 6 hours later, I was in ICU without an appendix, with an ileostomy and being pumped full of antibiotics.

The tumor on my appendix had burst, perforating my bowels, which made me septic. I think there were some in the hospital that thought I would never leave alive.

Five days later we were told I had cancer. Six days after that, I left the hospital to finally go home.

And the rest, as they say, is history.

Appt. with Dr. Loggie

2009-09-28T23:17:00.003-04:00

The time has come up pretty fast. It has been about two months since my surgery, which means it is time to make an appointment for a follow-up with Dr. Loggie.

We will be going to Omaha Tuesday, Nov. 3rd, then will get a CT scan first thing Wednesday morning (Nov 4th), then see Dr. Loggie directly after. Hopefully he will have some words of wisdom concerning next steps of treatment.

Actually what we are praying for is that he will look at the CT scan and say, "Hmmm... this is weird, there's nothing there."

Elke

2009-09-28T23:08:00.002-04:00

Yep, we got a dog.

Her name is Elke (fem form of Elkanah, which means "purchased by G-d"). She is a poodle mix (not sure what else, perhaps Bishon).

She is a rescue and was neglected.

For the most part, she is a great dog. Still a few issues with getting too excited, but we're working on that.

She has been good for me to help me get out of the apartment and go for walks, and to help me get out of this funk I have been in. Recovering from surgery, not having a job, etc., isn't necessarily good for the soul, but having a dog is.

And I'm starting to learn some lessons about being calm when things aren't going my way (i.e. when Elke wants to go one way, and I want her to go another). I know that getting angry with her does no good. Yelling at her does no good (I'm pretty sure she doesn't understand 99% of what I say). Being calm, and being the pack leader is what is needed (hat tip to Ceaser).

I'll be sure to post other lessons I learn as time goes on. Till then, this is Kevin, Roni and Elke siging off...

Questions on Yom Kippur 5770

2009-09-28T22:57:00.002-04:00

For the last couple of years I have been asking G-d the same questions. Why did I have to get cancer? Why me? Those questions can also be translated to "What did I do to deserve this?"

Intellectually I know the answers, yet I still continued to ask. The answer is the same for all these types of questions, and it is the same answer all the time. "It just is."

I didn't do anything to deserve cancer. It just happened. There is no great cosmic conspiracy. This is not some form of godly punishment. It's just that we live in an imperfect world. Good things happen to bad people, and bad things happen to good people.

So today, on Yom Kippur, it is time to change the questions. Instead of why did this happen to me, I want to start asking, "What can I do with my situation to help others?" "How can I take a crappy situation and turn it to good?"

My prayer for today, and going forward is, G-d help me to ask the right questions. The questions who answers have the ability to change lives. Mine and others.

Amen.

Some Good News

2009-08-24T14:32:00.002-04:00

Just a quick note to let everyone know some good news.

I spoke to my oncologist today to get my results from the tumor markers he had done about a week ago.

Just to let you all know, I have two main markers taken, CEA and CA 19-9. The normal range for CEA is between 0 - 2.5. The normal range for CA 19-9 is 0 - 35.

Right before my surgery, my CEA was 48 and the CA 19-9 was over 200.

After having my spleen removed, my CEA is now 5.3 and CA 19-9 is 42!! Both still slightly high, but this is the lowest then have been (without any chemo) in about 2 years.

Seems like the spleen was a big part of the problem.

As for my recovery, I'm getting a little better every day. Still not sure what the next steps will be. My oncologist has reached out to another medical oncologist and to Dr. Loggie for their opinions. When I know what is going to happen next, I'll let you all know.

For now, I'll let my body continue to heal, work on getting my strength back, and worry about chemo later.

Kevin

Post Op - Day 14

2009-08-11T09:32:00.002-04:00

Two weeks ago, I was on the operating table having my spleen removed.

One week ago, we left Omaha, NE to come home.

As you know from previous posts, it was a fairly quick hospital recovery. The trip home was, thankfully, uneventful.

The past week has been one of resting, healing and generally taking things easy.

Yesterday, I had the drain pulled (finally). And thanks to Dr. Gruenberg for that. I must admit, I was very scared about the pain. I have had drains pulled before, and to say it hurt like the dickens, would be an understatement. I was all prepared for the pain, but amazingly, the drain was pulled before I was even aware of it. No pain whatsoever.

So what's next? I need to call my oncologist to discuss the use of more chemo. After we talk to him, I'll post to let you all know what we decide.

Until then, I continue to take things easy, and continue to let my body heal from the surgery.

I would like to thank all of you again for the support, love and prayers. The emails, cards, comments have all been wonderful. Words can never express how much all of those mean to us.

With love and gratitude,

Kevin

Doctor's Visit Update, and We Get to Go Home

2009-08-03T21:04:00.004-04:00

Well, after another restless night of sleeping for a couple of hours, waking in pain, going to the bathroom, taking an oxycodone, then going back to sleep to start the process all over again, I finally got out of bed about 8 AM.

Roni was already up, and had already eaten breakfast. So while she was getting ready for the day, I went down to eat. I actually ate two slices of french toast, and had a half cup of Best Western coffee. One of the problems I've had in the recovery was getting my appetite back, but it is coming back, slowly but surely.

About 9:30 AM we headed to the doc's, thinking it might take awhile as I am walking much slower these days. But I did pretty well and we got there about 15 minutes early. The nurse came out and got me, took my vitals (all good), weighed me (about the same weight as a week before) and then it was only a matter of waiting for Dr. Loggie. He was in the middle of a consultation with a couple that we had actually met the night before, and spent a couple of hours with, just talking about having cancer. We were sure they getting smacked up the head with a very big reality stick, so wanted Dr. Loggie to take all the time he needed. In the meantime, the nurse gave us the initial pathology report and the surgical report to read. That's when we learned some very interesting (notice I didn't say "good"?) things.

We knew that the doctor had to leave some tumor, what we didn't know was that tumor contained signet ring cell. That is the most aggressive form of this cancer. We certainly weren't expecting that. This was the tumor that the doctor was able to see, but if he took it, it would require taking too much small bowel, which would mean a big decrease in quality of life. Fortunately, the doctor believes it is in such a place that it will not cause any problems for a long time.

Finally the doctor came in, and the first thing he asked is if I would be part of a research on signet ring cells in patients with colo-rectal/apendix cancer. He explained that they are learning some new things about how signet ring cells work, and how they are different in different patients. I think that because I had it before, and am still alive, he thinks my case is worth studying.

The other thing that we were hoping wasn't going to have to happen was more chemo. But it looks like since the tumor had invaded the spleen, and there was metastasis in a couple of lymph nodes (and because of the signet ring), it looks like chemo will be on the menu. We will discuss what would be the best regimen with my oncologist at home in a week or so.

The other disappointing part of the visit was that the drain they put in during surgery was still draining fluids, so they didn't pull that. It is difficult to take a shower with that, apart from the discomfort of having this tube sticking out of your stomach. Hopefully the fluid output will go down, and I can have it removed at my oncologist's office later this week.

So, that is the news for now. The cancer is still there, and again, the trick is not to let it take over our lives. We still have some uncertainty about what our future looks like. We have some disappointments, but we also plan on having some fun too. We plan on having some adventures, and good times with friends and family. We just need to learn how to treat the cancer, and still live life.

Getting Out of Hospital Today!

2009-08-01T09:38:00.002-04:00

I'm so proud of Kevin. He summoned his "inner soldier", pushed himself all day yesterday and made huge improvements! He did the long hall walk 5 times yesterday and since last evening has been getting himself in and out of bed on his own and has been sitting up in a chair for most of his awake hours, which are increasing along with much greater alertness. I'll know when he's really beginning to feel like himself again when he asks me to hand over the laptop. I think it won't be long now.

They will remove his neck IV port this morning, and we move into the hotel this afternoon. Monday morning we'll go to the clinic where he'll have the final foreign object -- a wound drain -- removed from his body. After Dr. L. looks him over on Monday he'll let us know when we can fly home. Home!!!!! Our own bed. Our peeps nearby. And home cooked meals courtesy of Iain and April!! (A thousand thanks for that wonderful gift.)

We are so grateful for the prayers that have been answered. Dr. L. said the platelet count has come way up, reinforcing the hypothesis that the enlarged spleen was the culprit. Now we wait to learn whether it was the sole cause of the elevated tumor markers as well.

Now our prayers shift from a speedy, complication-free recovery from surgery to ongoing quality of life. We pray that the results of the pathology report will not mean additional chemo and that the inoperable tumors will at the very least stay stable, or better yet, shrivel up and die! And no more surgeries. Ever!

Happy to be the bearer of good news,

Roni

Over the Hump!

2009-07-31T17:34:00.003-04:00

Looks like Kevin will be discharged from the hospital tomorrow. I'm not sure how long before we get to fly home, but it will be good to get out of here. It's a whole lot easier to get rest in a hotel than in a hospital. And hotels tend to smell better.

I can see Kevin getting stronger by the minute. Everything still exhausts him, but he's able to do more all the time. He went for three and a half walks yesterday. The half is because one walk got aborted after a few feet due to his IV pump battery dying, forcing us to return to the room for AC power. But Kevin insists on counting it! And he should; he still got himself out of and back into bed, and that’s the hardest part. Today he went for two pretty long walks already, with one more planned before bedtime.

His vital signs are good. He was taken off all IV completely until this afternoon, when they hooked him up temporarily to get a few more fluids into him. I imagine they’ll take the port out today or first thing tomorrow, and then he’ll be completely free of tubes.

He was graduated to solids foods this morning, and his digestive track is working again and good to go. (He he)

As always, thanks for all the emails and comments. I have a slew to read to him when he wakes up from his nap. And, we just got a mail delivery!! How exciting is that?!!

Roni

The Road to Recovery

2009-07-30T19:13:00.001-04:00

Since last night there have been some ups and downs, but Kevin's making progress overall. Our good friend who's an ICU nurse assures me that these ups and downs are normal, but that Kevin’s blood oxygen level needs to improve somewhat in order for him to be safely and steadily on that road to recovery. (Thank you Scott so much for the reassuring phone call and wise words of advice!)

In addition to blood oxygen levels, doctors had some concerns about the heart rate last night, which required some medication, but the heart rate has stabilized within normal range since early hours this morning. (Thanks Rabbi for the wee hours phone call/prayer!) Since last night his blood oxygen level has fluctuated between 88 and 92 – it needs to stabilize in the mid 90s. Kevin’s doing his best to work his lungs -- two walks so far today and hourly workouts with the incentive spirometer (or as I used to call it – the breathing tube thingie). Scott explained that it’s much better for the recovery process if Kevin can improve the level on his own. If he has to rely on an oxygen mask, it will set him back. Thankfully, even though improvement is still needed, so for far he’s been able to bring the level up enough to avoid the mask.

In terms of how he's feeling, his throat is feeling much better, especially since starting on a liquid diet at lunch. Thankfully his incision area is not giving him much pain and he's not having to use too much of the pain meds. In terms of how he feels overall, that goes up and down with the blood oxygen level. Mostly he’d sleep constantly if he could and feels really wiped out when we wake him for exercise.

He’s really pushed himself today to try and get past what can be a vicious cycle of: not feeling well; so staying in bed and just sleeping; so not getting enough oxygen; so not feeling well… He took two walks down the hall, has worked hard on hourly breathing exercises, sat up in a chair to eat his lunch – popsicle, some Jell-O and tea -- took a chair “bath” and changed his gown. To use a military analogy, I think today was something of a “forced march” day.

Please do continue to keep him in prayer for:
- his blood oxygen level to increase and stabilize
- his heart rate to continue to be normal
- his digestive system to continue to “wake up” so he can progress to a soft diet tomorrow
- his spirits. This is the 4th time he’s had to endure this recovery process, and I can see he’s feeling so DONE with it all. It’s not fair, it sucks big time, but he can’t give in to the emotions that go along with that; he has to keep fighting. And that’s what he’s doing. I’m very proud of him and grateful.

Discharge update: Doctor thought this morning that Kevin still may be on track for release tomorrow, but if his blood oxygen level does not reach the mid-90s and stabilize, that won't happen. We’ll see. It could turn around quickly.

Support our troops: One more military analogy – nothing helps a soldier’s morale like a letter from home. Keep those emails and blog and facebook comments coming. Just one or two lines are all it takes to get a smile out of him.

I’m not sure what time tomorrow I’ll post again. If I have either GREAT news or significant concerns, I’ll post ASAP. Otherwise, assume that no news is good news.

Thanks for reading, caring and praying,

Roni

Post Op Day 1 -- NG Tube Already Out!!

2009-07-29T12:33:00.002-04:00

They pulled the NG (naso-gastric) tube out at about 10:00 this morning. Yippeeeeeee!! That thing has always been the worst part of recovery for Kevin. Gives him a horrible sore throat, which he can't sooth with liquid or lozenges since he's not allowed anything in his stomach yet.

They discontinued the shots they were giving him for pain and hooked him up with an IV that dispenses happy-feel-good dope at the push of a button.

Saw Dr. L on rounds. I mistook what he told me yesterday about the tumor markers. They won't tell us anything useful for a couple of weeks.

Kevin didn't sleep much last night and up until now, hasn't been able to rest this morning with all the activity -- early rounds, regular rounds, hooking up pain meds, antibiotics, fluids, electrolytes, etc. to the central line they put in during surgery and taking out the IV lines in his arms. But the last of the "fussing" ended about 25 minutes ago. Within 10 minutes of the last nurse leaving, Kevin was already lightly snoring -- a sound that makes me happy.

He's started reading the emails and facebook comments already and is grateful for all the expressions of love and friendship. I am so blown away by all the special people in our lives, especially you fellow PMPers -- your words of support have bouyed us up so much.

And thanks to my Beth El sistas who have called even though I couldn't really talk. Just hearing the voices makes it less lonely.

The love and support of our family and Rabbi Bruce are priceless.

When Kevin wakes up, it'll be time to get him on his feet and take a little walk; literally taking steps to getting him out of here.

That's the news for today. Keep those prayers and emails coming. Just don't mention food. I think he's dreaming of pizza. :-)

Roni

Surgery over -- Prognosis is good, but still some uncertainty ahead

2009-07-28T18:41:00.004-04:00

Surgery was over at about 2:20 p.m. CT, and I spoke to the doc shortly after.

Kev is recovering so well that he did not have to go to ICU following surgery, as we all expected. I am writing from his room, trying to get this out before I am lulled to sleep by his soft snoring and the hum of the IV machine. He is experiencing minimal pain; it's being managed very well by a non-opiate drug -- he'll get his strength back sooner without opiates.

Out With the Spleen
It took five hours to get through the significant adhesions before they could even begin to remove the spleen.

Doc said it was enormous, making him sick. Depending on how long it’s been that big (remember, CT scans lie), it might have had something to do with how hard the chemo was on him.

Once the spleen was out, the platelet count went back up. Yay!

No Other Tumor Removed
Despite the encouraging report I received during the surgery, in the end the mesentery tumor was not removed. Too many adhesions, plus problems with blood supply it attached itself to would have resulted too much bleeding and too much small intestine coming out with it if removed. The loss of small intestine would have resulted in greatly diminished quality of life.

Though we would have preferred it out, Dr. L said after taking a thorough look at it, he does not think that the mesentery tumor poses a threat (read bowel obstructions) in the foreseeable future, if ever. Sigh of relief. We'll know more in the coming days.

Follow Up Chemo?
We will get results of pathology report next week, probably Wed. In the mean time, Dr. L. expects that we’ll see the tumor markers drop significantly in the next couple of days as he thinks it likely that the spleen activity was the sole cause of the rising markers.

Based on what he saw, Dr. L. thinks that the tumor was not only on the outside of the spleen, but also invaded it. If it turns out that there was disease inside the organ, I’m guessing that may mean more chemo to insure against systemic spread, but haven’t had that conversation with doctor yet. We’ll cross that bridge when we get to it. What Dr. L. did say was that if Kevin does have chemo in the future, he thinks that having that diseased spleen out will help Kevin tolerate it much better.

Oh No, You Need a Spleen…
Once when Kevin was telling someone about all the innards he had removed during his Feb. 2004 surgery they replied that they didn’t realize one didn’t need those things, to which Kevin replied, “Oh no, you need them, you can just live without them.”

The spleen serves to ward off big, nasty viruses (like swine flu); without a spleen one is more susceptible to those bugs and things like pancreatitis. Kevin will be getting some major antibiotic doses and will always have to keep up with vaccines and flu shots.

Getting Sprung and Coming Home
Dr. Loggie says he wants to shoot for getting Kevin discharged from the hospital on Friday! Woo hoo! We’d then check into a local hotel until he’s had some more post op follow up and is healthy enough to fly. If all goes well, we should be home in less than two weeks. I’m not sure about total recovery time. Another bridge we can wait to cross.

Thanks!!
For the emails and facebook messages. Words of encouragement are not just a gesture, they really are encouraging. Thanks for taking time out of your day to send them. I'm sorry I haven't been able to respond to most, but I've appreciated every one and saved all for Kevin to read when he's up to it.

And a special thanks to my new PMP Awareness friend, Rosemary S. who was in Omaha tending to her nephew who had recent surgery with Dr. Loggie for PMP. Before driving home to Chicago today, she ran around to local stores to find a robe for Kevin, bought me cereal and water, and brought me an air mattress! The visit and the hug were very welcome, too. Please pray for Tom, her nephew (in late 20s) who was only diagnosed in June and who, like Kevin, will be living with inoperable tumor. He has a lot to process as he recovers. And, pray that the disease stays in remission.

Okay. You’re now about as informed as I am. Time for a nap!!!

Love and gratitude for you,

Roni

Surgery update -- 5 hours in

2009-07-28T13:34:00.001-04:00

I got my last update a bit before noon CT. The liaison told me all is fine, and that they were getting ready to remove the spleen. Five hours to get to that point! When I asked if it was going slowly because of adhesions and/or bleeding, I was told that they are being “meticulous.” Ah yes, now I remember how this goes -- vague answers to specific questions.

The important thing is that I am told all is going well, and happy news – they have cleared their way to where they can see the mesentery tumor, and they plan to remove it once they’ve taken the spleen. Yay!! Thanks for all prayers that they could get that tumor during this surgery.

I neglected to ask how much longer the surgery is expected to take, but I’m sure I would have received a vague answer anyway. If I were in the surgeon’s shoes, I wouldn’t want to commit to specifics either, so I understand. I knew this day would be all about waiting,…

Assuming that the next update they give me doesn’t contain any surprising news, I’ll wait until the procedure is over and I’ve talked to the doc before I post again.

Thanks for all the emails and voice mails. It really helps me to know that despite sitting alone in a waiting room in Omaha, I’m not alone at all. You people are the best!

Roni

Kevin went into surgery at 7:00 am

2009-07-28T08:45:00.002-04:00

His spirits are good, considering… The entire staff here is so warm and gifted at putting people at ease. Not surprisingly, Kevin drew upon his humor to keep himself and the nurses laughing while waiting. But when he couldn’t think of a joke, he was pretty subdued, thinking about waking up with that NG tube and days of pain and weakness ahead of him. But I reminded him that though he feels helpless and weak lying on that gurney, he’s a warrior to be reckoned with.

The surgical staff informed us that blood tests showed that his platelet count is on the low side. Dr. L said that can either be caused by an unhealthy spleen (which is coming out) or be a marrow issue. It puts Kevin at extra risk for bleeding, so Dr. L. said he’s taking the IHCP option (heated chemo) off the table – it’s just too harsh. He’ll take the spleen out first and see if the platelet count goes up before determining what additional surgery he feels is safe to do. Please, please pray that the platelet counts come up and they are able to proceed with taking out the tumor on the mesentery. That’s the one that could cause real problems (bowel obstructions) down the road, so we want it out!!! Taking it out in a future surgery after getting platelets up I guess is an option, but Kevin has had enough surgeries. I really want this to be the last one he’ll need.

I’ll be getting my first update from the surgical team at about 9:00 CT.

Until then, thanks for the prayers!!!! Roni

What to expect -- it depends...

2009-07-27T16:47:00.004-04:00

This is Roni writing from Kevin’s hospital room. He’s been admitted, fed Jello, pricked, EKG’d... All the usual pre-admission stuff with the usual result – “otherwise healthy”. It’s a blessing that he’s going into the surgery strong.

He had the consult with surgical oncologist Dr. Loggie at about 11:00 a.m. Central time. Just a confirmation of what he’d said before: Plan A is to go in and remove the two tumors that appear to be active along with the spleen. However, Dr. L. is keeping all options open – everything from removing nothing (Plan never-mind) to going after the other two tumors plus any others that might be discovered and giving the heated chemo (Plan go-for-CURE! I like this one.) It all depends on what he sees once he goes in.

The reason for the wide range of possibilities is that the CT scans don’t:

always show all disease; per Dr. L., CT scans “lie” a lot. But Kevin’s have been consistent enough that his are somewhat more reliable than most.
show extent of scar tissue, which is a huge factor in what can be successfully removed

The good news is that even with worse case scenario – can’t successfully remove tumors – chemo is still an option. But we are praying that the outcome of the surgery will be cure, or at very least, remission and chemo will not be needed to keep the disease from progressing. Basically, we are asking G-d to restore quality of life as well as length of days.

It’s standard with these abdominal surgeries to give a private room and have the caregiver stay with the patient, so Kev’s hospital room is home base for both of us until the morning. They’ll come at about 6:00 a.m. Central time to take him to the OR. In between answering questions, getting X-rays, etc., Kev’s been listening to music, trying to rest some and battling his nerves. Just being in a hospital room and wearing the gown brings back a lot of memories, none of them pleasant. He has been buoyed up by the emails and facebook messages he’s received since we left home yesterday. What wonderful, caring people we have in our lives!!

The surgery tomorrow is expected to take 4-5 hours, give or take several hours, depending on what plan ends up being enacted. Holly, Dr. L’s fabulous NP will be giving me updates every couple of hours tomorrow during the surgery. I’ll pass along updates as I’m able. Recovery time also depends… with Plan A, hospital release may come as soon as Friday, but we would have to stick around a few days for post op visit. Kev will be in ICU from 1-3 days. I’ll move the to hotel across the street tomorrow, then back into his private room once he’s released from ICU.

Contacting us:

To reach Kevin, emailing (kevkersey@me.com) or leaving comments on this blog are best. That way he can read as he feels up to it. Plus, he’ll have the dreaded NG tube in for the first few days, so it will hurt to talk.

I’ll have my iPhone with me and will be checking it often for email (ronikersey@me.com) and voice mail messages. Any calls made to our home phone will be relayed to my iPhone.

Snail mail is:

Creighton Medical Center

Kevin Kersey -- Room 5514

601 N. 30^th St.

Omaha, NE 68131

We feel the love and prayers,

Roni

Preparing For The Next Battle

2009-07-26T10:43:00.005-04:00

So, everyone knows that I am going in for my 4^th surgery to deal with my cancer, and if you didn’t know, you do now.

Today, Roni and I are flying to Omaha, and Monday, I check into the hospital. I’ll do the obligatory “pre-admission” testing, and hopefully no CT scan. Then in the afternoon start the “bowel prep”. Yes, that is as bad as it sounds. :-)

Tuesday morning, they’ll come get me, hook me up to an IV, wheel me into the OR and put me to sleep. This will be the hard part for Roni. Waiting.

The doctor believes there are two spots he can get easily, and two others he says he will try to get if there is not too much scar tissue. The amount of scar tissue will also determine if he uses heated chemo during the surgery.

What we are praying for, is that the doctor is able to get all of the tumor. That the recovery will be quick, and uneventful. That Roni will be able to get much needed rest, while at the same time, being able to keep an eye on me. And that in less than 2 weeks, we’ll be on our way home.

Roni will keep you all updated on my progress until I am able to take over.

To close on a personal note, I can’t help but remember my hospital buddy from my last two surgeries in Washington DC. Her name was Alice Hyland, and she was diagnosed with the same cancer I have. She had her MOAS just a day or so later then I did. She was back in the hospital in July 2004, for a follow-up surgery, just a week after I had mine.

I remember her parents visiting me every day, just to check in and see how I was doing. I remember sitting in her room, chatting. I remember walking the halls together, dragging our IV poles with us.

I remember finding out she passed away about two years ago. She was only 29 years old.

I told my wife that I would continue fighting. I’m fighting for Roni. For my family. For my friends. For my fellow PMP patients. And I’m fighting for the memory of those whose battle is over.

Please keep us all in your prayers.

Thank you,

Kevin

Surgery Number 4

2009-06-03T17:52:00.001-04:00

OK everyone, here’s the latest on my situation.

We met with Dr. Loggie last week (May 27th) for a follow up consultation. One of the things we had been frustrated about was that no one has been able to give a clear choice as what to do next. Fortunately, Dr. Loggie was very forthright and “confidently” suggested a surgery to remove two spots that he believes are causing the rise in tumor markers, and could possibly cause problems down the road.

The two spots are on the spleen and the mesentery, which is near the bowels. Dr. Loggie believes that if there is not much scar tissue, it should be a fairly straightforward surgery. However if there is too much scar tissue, and he doesn’t think he can remove the tumors, he says I still have options.

The option is a drug called Erbitux, given with chemo. It turns out that my tumor was tested to see if had mutated. Fortunately for me it hadn’t, so Erbitux is a possibility.

The surgery is scheduled for July 28th in Omaha, NE. I will be admitted to the hospital July 27th for testing. It is estimated that I will be in the hospital for 7 – 10 days. Dr. Loggie will also want me to stay in Omaha for a couple of weeks (which includes the hospital stay). If I end up doing better, I’d be able to leave earlier.

As stated in the title of this post, this will be my fourth surgery related to cancer. Hopefully it will be the easiest.

As of now, I am doing OK. The neuropathy in my fingers and feet are still bothersome, especially with the cold. My finger tips are effected the most, making everyday simple tasks a bit more difficult. The neuropathy also causes easy bruising.

So, that’s the story so far. Your prayers of course are always appreciated.

Best Card Ever

2009-04-04T23:07:00.002-04:00

Just wanted to share with you all what I think is probably the best card I ever received. It was from a couple in our synagogue.

On the outside is a cartoon picture of an owl sitting on a branch and it says, "One day, you'll look back on all of this with the wisdom that distance bestows and you'll say..."
.
.
.
Open card...
.
.
.
"Wow, that sucked."

I'm still laughing...

Wrapping my head around the “prognosis”

2009-04-04T22:56:00.003-04:00

Roni writing.

So, what I was hoping would happen with this second consult with a specialist is that this doc would have a better idea of what is going on now with this disease, what the expected rate of progression is (or is not), and that he would be able to tell us how to “fix” it. But we came away from the consult with more questions than answers.

I’m grateful that this doctor admits when he doesn’t know. I’m frustrated by how much the doctor doesn’t know. Not his fault. The way that the disease has recurred in Kevin is “confounding” – doc’s word. And, his opinion matches that of the first specialist we consulted with.

Dr. Loggie explained that what he sees on the CT/Pet scans is not consistent with the tumor markers, which are not consistent with the original diagnosis and the way that cancer typically recurs. Dr. Loggie told us that if he were going solely by the scans, which show little changes over the period of a year, he would assume Kevin has the least aggressive form of the disease. However, the change in tumor markers suggests that there is maybe something a little more aggressive going on. But, what he would expect from Kevin’s history is that the disease would have recurred with the most aggressive form (signet ring cells) that was present five years ago. But, he knows that hasn’t happened because as he said to Kevin, “You’re not dead.” A little blunt, but effective in getting the point across.

BTW, I believe that the reason the signet ring has not recurred is because G-d healed that five years ago. When viewed through a purely scientific lens -- confounding. But healing from G-d in answer to prayer is an explanation that makes sense to me.

But back to "prognosis": Both specialists also agree that another curative surgery like the MOAS Kevin had in 2004 (complete cytoreduction with heated chemo wash) has been ruled out as too risky and not likely to be successful due to too much scar tissue, problimatice placement of tumors, etc. And while chemo can slow progression, it has not ben known to cure this type of cancer.

So, here’s how I’ve been best able to wrap my head around it. It’s kinda like you’ve learned that there is a bomb strapped to your body that there’s no way to remove. The bomb has a timer, but no one knows when it’s been set to go off. Not only that, there’s some evidence that the bomb maker was completely incompetent and the bomb may never go off, but no way to know for sure. If you try to disarm the bomb by cutting the blue wire (complete cytoreductive surgery), there’s a good chance that the attempt would prove fatal but a very poor chance that you would disarm the bomb. You could keep it from going off for a while (chemo), but you have to trade quality of life indefinitely to do so.

If you are confused after reading that, then welcome to the club.

So in light of all the “confounding” information, I love how the doctor is approaching Kev’s case. He is not trying to fit Kevin's atypical case into a typical protocol. He wants to study it more and spend some time thinking outside of the box and exploring every option. He’s going to look at two additional tumor markers, besides the two that we’ve been tracking, and wants to see what happens with the tumor markers during a two month “vacation” from chemo. We’ll meet with him again in two months, at which time will see if the doc has a better idea of what is going and together explore a hopefully wider range of options.

In the meantime, we continue to pray for more healing as well as wisdom for ourselves and the doctors. We still plan to meet with a medical oncologist to see if perhaps a more maintenance, less life-disrupting, chemo regimen is one option.

We appreciate all of you who join us in prayer and support us with your words of love and encouragement.

Doctor's Visit Update

2009-04-02T16:18:00.019-04:00

Tuesday started like every other day. Roni left for work, and I woke up about 8 AM. I checked my email, surfed some of my favourite conservative blogs, then laid on the couch eating bon bons and watched Oprah. OK, you got me. I didn't really watch Oprah, and we don't have any bon bons in the house.

I was supposed to pick up a prescription from a pharmacy about a half mile away and was wise enough to call first to make sure it would be ready. Glad I did because it wasn't. They said they had called the doctor to get him to send a new prescription and was waiting to hear back. I then called the doctor's office and they said that if the pharmacy called them, they would OK the refill. So I called the pharmacy and told them to call again. Which they did.

I then went to get a haircut and beard trim, stopped by the store and picked up some snacks for our plane ride to Omaha, then stopped and got some lunch.

As I was finishing lunch, I got a message from United airline saying our 6 PM flight to Chicago (on our way to Omaha) was canceled due to mechanical problems. Great. I then spent the next hour or so calling the airline and getting a new flight. The only problem there is that the only flight they could get us on left an hour earlier, so I had to call Roni and let her know. By this time, I only had a few minuets to get our bag and laptop, and leave for the pharmacy (and hope that they had in fact called the doctor for the new prescription.)

I walked to the pharmacy, which included taking about a hundred steps (and I NEVER exaggerate) down the hill. As I have not had a lot of exercise due to the chemo side effect of fatigue, this was not as easy as it sounds. Needless to say, even though it was all downhill, it still worked muscles I haven't worked in a long time. I waited about 15 minutes for the prescription (which was ready), called for a car to the airport, and made it there in time. Roni had arrived there just a few minutes before me, and as I had checked in online, I already had our boarding passes. We headed to the gate, and guess what? This new flight was delayed and it ended up leaving after when our first flight was supposed to have left. We flew to Chicago Ohare, where we were to catch a connecting flight to Omaha. And just to make life more interesting, that flight was also running late, and we left Omaha over an hour later than we were supposed to. We arrived at the hotel about 11:30 PM tired but glad to finally be there.

In the morning, we had a quick breakfast with Roni's cousin whom she hadn't seen for years, and I had never met. We had a good time catching up and talking about life.

At about 10:15 AM, we checked out of the hotel and walked over to see Dr. Loggie. Unfortunately, he was seeing another patient, so we didn't get to see him until about 12 noon. The bad thing about this is that our flight was scheduled to leave at 1:30 PM, which meant we were a little rushed in our consultation

Holly, Dr. Loggie's PA, took my vitals, which were pretty good. Blood pressure was good. Weight was fine. Temp was normal. Heck, if it wasn't for the cancer, I'd be in pretty good shape.

I was then asked to put on a gown and wait for the doctor.

Dr. Loggie came in and did a quick examination, which included the always fun anal examination. Kind of reminded me of the time I was abducted by aliens. :-)

We told him what Dr. Esquivel told us (that he didn't really know what was going on with me, and besides not recommending surgery, didn't have much else to recommend). He then asked if we had seen the scans, and since we hadn't, brought us into another room so he could explain what he saw.

The good news is that he did not recommend surgery either. The bad news is that he too said he did not understand what was going on with me. He said that according to the scans, he did not see anything of great concern, but was curious as to why the tumor markers were rising, even if they were not rising dramatically.

One thing he did mention is that with my original pathology report, which included signet ring cells, he was still amazed that I was still alive (something that Dr. Esquivel also mentioned) and looking as well as I do. While this was comforting, the fact that no one could tell us why the tumor markers were rising was still a little disconcerting.

His recommendation for now was to wait a couple of months, get another CT scan, another set of tumor markers and come see him again to see if anything changes and then go from there.

As we were in a hurry to catch a flight home, one of the ladies that work in the cancer center gave us a ride to the airport. When we went to check in, we were told we were too late, but were given a boarding pass and told to race to the gate in the hope they were let us on.

We went through security, and Roni raced to the gate to let them know I would be there soon. Of course "easy" wasn't on the menu. Security took our bag, went through it and took out all of our 3 oz containers because they weren't all in a separate bag. They did this a couple of times, to make sure they got everything. While this was not a problem leaving NY, I guess TSA in smaller airports like Omaha have more time on their hands. Needless to say, we missed our flight.

Fortunately Roni had already got us seats on another flight that was supposed to leave about 3 PM. That gave us time to get some lunch and relax.

We were supposed to fly from Omaha to Chicago, then from there to Washington DC, and from there to JFK. Because we missed our first flight, we also missed our connecting flight out of Chicago. This turned out to our advantage because we were able to get on standy on a flight directly to La Guardia (instead of flying to DC, then to JFK). We thought this was great because we would get home sooner. As luck would have it, this flight was also late, and because La Guardia was experiencing bad weather, flights arriving there were being delayed, which meant we left Chicago about an hour and half later than we were scheduled to leave.

We finally landed in La Guardia, caught a cab and got home about 9:30 PM. After all the traveling travails we have had in the past week or so, we were glad to be home and looking forward to not having to fly again for at least a couple of months.

So for now, concerning the cancer, we are no closer to determining a plan of action for this recurrence, but we feel comfortable that we have good, qualified people on our side who are working with us to keep me alive and give me a good quality of life. And for now, we just keep living, and enjoy life the best we are able.

One of the hard parts is trying to plan for the future. My disability runs out in a week or so, which means that my severance (from being laid off from work) will soon kick in. Does that mean that I start looking for a job? Plan for more chemo or some other treatment? How will any treatment effect my looking for a job, or if I got a job, would it be put in jeopardy because of my cancer? These are questions we have no answer for.

One thing we do know from experience is that G-d has been with us through all of this. We don't know what the future holds, but we do know that G-d has led us through many hard times before, and all we can do is trust in Him that He will continue to guide us through this current battle.

Of course because of all the walking I did on Tuesday, my legs are aching. Fortunately it is an ache from not exercising and not from anything that should cause concern. I am also starting to get some energy back, so slowly but surely I hope to get back into shape and get ready for whatever comes next. Spring is also coming and it is warming up here in NYC, so I am able to get out more and get some fresh air. It's still not as warm as Jamaica was, but it's better than the frigid cold we had during the winter. I'm looking forward to getting out more, getting some exercise and getting back to living. And until we know more, that's what I'll do.

I would also like to thank everyone for your prayers, well wishes and good thoughts. Your love and concern are felt deeply by Roni and me and we cherish all of you. We'll keep you updated as we learn more.

Kevin

How I'm Doing

2009-03-29T17:27:00.003-04:00

Just a quick update to let you know how I am doing physically.

The side effects of the chemo are still lingering. The cold is still causing neuropathy in my hands and feet. I am able to drink cold drinks, but can't hold the cold glass for very long before my fingers start to hurt. While it is slowly getting better, it is still very annoying. Being back in NYC, I feel it especially at night. I'll wake up and the neuropathy will be bothering me. So I go back and forth from being hot and taking the blankets off, to being cold and pulling the covers back over me.

The fatigue is also still bothering me. A couple of weeks ago I went to see my oncologist and had to be given a shot of Neuprogen to bring my blood levels back up (white and red blood cells were low). Hopefully this too will pass and I'll start to get some energy back.

The last side effect that keeps bothering me is a metallic taste on my tongue that has lingered for awhile now. Fortunately, it does not keep me from being able to taste food, it's just in between eating or drinking that is when it is annoying.

As for doctor visits, this Tuesday, we will be heading to Omaha, NE. Wednesday morning we will be meeting with Dr. Loggie, a surgeon and specialist in PMP to see what he might suggest for our next steps. I'm not looking forward to more traveling, but hopefully we'll get some good news.

I was also scheduled to get a second opinion from another medical oncologist, but I have to get more of my medical records to her, so that meeting is postponed until April 13th.

Well, that's it for now. I'll post again after we meeting with the surgeon.

Vacation

2009-03-29T17:11:00.002-04:00

As I mentioned in my last post, Roni and I headed to Montego Bay, Jamaica for a vacation. We needed some time to just relax and not think about cancer. Plus, I was able to go outside, something I haven't been able to do while it is cold here in NYC. The temperature in Jamaica was between 70 and 80f, and even though the neuropathy in my hands and feet bothered me a little, the weather allowed me to be outside, even in the evening.

The resort was OK. Nothing to write home about, but we got a good price, so it was worth it, especially as it was an all-inclusive. Besides, the view from our room was pretty good, and we were able to watch the sunset over the ocean every evening.

Usually while on vacation, we try to do something adventurous. In the past we have walked through the old city of Fez, Morocco, walked on a glacier in Alaska, went snorkeling in the Bahamas, etc. But this time, we just stayed on the resort. I am still fighting fatique from the chemo, so we decided that this vacation was for relaxing. We did go out of the resort once and within 5 minutes were accosted by two people to come to their souvenior stores. That was enough for me to keep me from leaving the resort. I just wasn't up for dealing with people pretending to be friendly, but only wanting my money.

The only problem we had was when we were on the plane to come home on Thursday. As they were towing the plane back from the gate, something happened to the towbar and we think damaged the nose wheel gear. We sat on the plane for about an hour before they decided that it wouldn't be safe to fly, so we went back to the gate and got off. After about an hour or so, American Airlines told us they were sending a part to Jamaica to fix the plane, and in the meantime, they would be putting us up in a hotel for the evening. So, more waiting while we stood in line for our hotel vouchers. Once we got those, then got on a bus, it was about 7 PM when we got to the hotel, Rosehall Resort and Spa (a Hilton hotel). When you realize we left our resort at 12:30 PM and our flight was support to depart about 3 PM, it was turning out to be a long day.

They told us that our flight was going to leave at 6 AM, so we had to be ready to leave for the airport at 3:30 AM, or we used to call it in the Air Force, Oh-Dark-Thirty.

The voucher they gave us was good for food and drink, so we had a great meal before heading to our room. I took a hot shower, and laid down to sleep about 9:30. I haven't been sleeping well, so I usually take an Ambian to help me sleep. Well, as we had to be up at 3, I did not take an Ambian, and probably got a total of 30 mins or so of sleep.

3 AM, our alarm went off, we packed up and left for the airport about 3:40. Because we had to go through customs and immigration when we left the airport on Thursday, we had to go through all that again to go back to our flight. Our flight was scheduled to leave at 6AM, but we didn't start boarding till about 5:40. We finally took off about 7 AM. The flight took over 3 hours. After getting our luggage, catching a cab (getting stuck in traffic), etc. we finally got home about 12 noon. So as you can imagine, it was a long ordeal getting home, but we made it back safe and sound.

But even with all of that, the trip was worth it. The warm weather was great and I enjoyed being able to be outside. Hopefully it will start warming up around here so I can get outside my apartment more as well.

The Fun Continues...

2009-03-20T18:43:00.002-04:00

And by "Fun", I mean "not fun".

I talked to my oncologist today to get the results of my tumor markers taken on Tuesday. It seems that after I finished chemo, my markers started to go up again. My CEA went from around 16.9 (taken after my 5th round) to 19 (a couple of weeks after my final round). Not very good news at all.

Our next step is to meet with another PMP specialist in Omaha, NE. We had met with Dr. Loggie before, but decided to go with a surgeon a bit closer. But since the doctor that was closer did not give us very many options, we have decided to go back to the one in Omaha. We will be meeting with Dr. Loggie on April 1st (yes, April Fools Day) at 10:30 AM to see what he might suggest. We found him to be very hopeful last time, and hope he will have some good news for us this time as well.

The Monday before we go to Omaha, we will also be meeting with another medical oncologist here in New York City. While I find my oncologist to be very capable, we are just trying to cover all of our bases with second opinions.

And so we keep seeking answers and we continue to appreciate your prayers.

Kevin

PS - Because we also need to relax, Roni and I will be heading to Jamaica tomorrow (Mar 21) for a few days of warmth and nothing to do except lay on the beach. We are looking forward to taking a break from thinking about cancer for awhile.

Faith and Hope

2009-03-17T07:37:00.002-04:00

Roni here.

Talking to the doctor yesterday was deflating, to say the least. But with help from wise words from our rabbi, encouraging words from friends, and perspective that comes with prayer, I am feeling hopeful and remembering that doctors can only give us their best guesses and, as scientists, don't factor in divine intervention. And I have learned through this journey that that is a very incomplete way to look at things.

We remind ourselves that thus far, we have heard just one doctor's opinion, and we have already contacted a surgeon in NE who, when we consulted him last winter, seemed to think that when the time was right he could perform a preemptive, curative surgery. So, we are in the process of lining up a second opnion consult with him.

We've been remembering how when Kevin was first diagnosed 5 years ago G-d led us, through a series of coincidences that are better explained as "divine intervention," away from the doctors who did not have hope for him to the one who was willing to take Kevin's case. And how even that doctor was amazed at the outcome calling Kevin "miracle man." When the oncologist reviewed Kevin's chart with us prior to Kevin's discharge afer the MOAS*, he looked up after reading the medical history and sequence of events, looked us both in the eyes and said, "I hope you believe in G-d." We did and do! We know that it's doctors' jobs to approach things as scientists dealing with odds and probable outcomes, but Kevin has already beat odds of 95% against. So, we will continue to seek the right doctor(s) while putting our trust in G-d.

And as always, we are grateful for all prayers and words of support. We are blessed to have so many caring people in our lives.

*Mother of all surgeries

PET Scan Update

2009-03-16T16:23:00.003-04:00

Well, we finally heard back from Dr. Esquivel this afternoon. As many other times in this journey, we did not get the news we were hoping for. Basically, Dr. Esquivel said besides doing more chemo, there is not much else to do. To us, it sounded like, "just wait for the inevitable to happen." He does not believe that a surgery would be curative, as he does not believe he would be able to get everything. And, he confirmed what we have always been told, chemo will not kill this cancer, just keep it at bay for awhile.

So, according to his recommendation, it is either more chemo, or nothing.

Not being satisfied with either of those choices, we are in the process of getting some more opinions. One thing we have become a strong advocate for.

We will be contacting Dr. Loggie, a specialist in Omaha, NE that we met with before, and who at one point thought surgery would be helpful, but just not necessary when we met with him (which was in Dec 07). So we will meet with him again to see if his opinion has changed.

I have also made an appointment (March 30th) to see another medical oncologist who has experience with this disease. While my oncologist has been treating me for over 5 years, he still relies often on the opinion of the surgeons that we meet with, so it would be good to see what another oncologist would have to say about my situation.

And there you have it. Another bump on this road that we have been diverted on to. Is it scary? Heck ya. Being told that there is really nothing that can be done is frightening. Your mind starts racing towards the worst possible outcome, even though in reality, none of us know what the future holds.

Maybe it's not knowing what the future holds that is scary. Maybe it's that we have no control of what the future holds that is scary. Maybe it's that the future has a possibility of creeping up on us faster than we want.

Maybe it's a little bit of all three.

I'll post again when we get more information.

5 Years Post Op

2009-02-19T09:16:00.004-05:00

Yesterday (Feb 18th) was the 5th anniversary of my MOAS (Mother Of All Surgeries), which was done in Washington DC. So, 5 years ago today, I was probably getting out of ICU and being moved to my private room, where I would spend the next 16 days.

Since then, I have had some ups and downs. Roni and I have had opportunities to travel to some great places (Israel, Florida, Arizona, Bahamas). We have spent time with friends and family. We've eaten some great food and have enjoyed life.

On the down side, we have gone through the battle of cancer recurrence. We have met with cancer specialists, spent time in doctors offices, and chemo rooms.

It's been one heck of a ride, and one that we were hoping not to have to go through again, but, here we are.

We are thankful that G-d has been with us, and seen us through some rough times. He has given us the courage and strength we needed, when we needed it. We are thankful for friends and family that have stood with us during this time, and can never do enough to show our appreciation for the love that has been shown to us, and the prayers that have been offered up for us.

So, 5 years since my major cancer surgery, and 5 years, 4 months since I was diagnosed and I'm still here. In 5 years, I hope to post again about the adventures, trials, good times and bad times that we have gone through.

Kevin

One Week of Chemo To Go

2009-02-15T18:52:00.004-05:00

As the title of the post says, I have one week of chemo left. Tomorrow (Monday) I will get my last infusion of Oxiliplatin. This is one thing I both dread and look forward to. Dread, because of the pain, and the side effects. The reason I look forward to it is because it is the last infusion, and I'll be glad when it is over and done with.

As you may know, I am taking two types of chemo. Oxiliplatin is one, and Xeloda is the other. Xeloda is taken orally in pill form. I take 3 in the morning and 3 at night. The last day I will have to take Xeloda is next Sunday (Feb 22), which will also be our 17th wedding anniversary. It's pretty safe to say I won't be up for much celebration, so we'll have to wait until some of the side effects start to wear off.

As one of the latest posts Roni made, we need my platelets to be high enough so that I can get the infusion tomorrow, so we seek your prayers that my blood levels will be good enough for the chemo treatment.

I also want to update you on my tumor markers that were taken during my last chemo infusion. After three rounds of chemo, my CEA dropped from 28.9 to 15.7. After the fourth round, it went back up to 16.5. Not a big increase, and my oncologist didn't seem that concerned. The normal range should be between 0 and 2.5, so it still has a ways to go. We're praying that the blood test taken tomorrow, will show another decrease. My oncologist also said that the chemo will probably continue working for up to a month after the treatment, so hopefully, the CEA will continue to drop.

So, what can we expect after the chemo is over? There are a couple of scenarios. The first week in March, I will get another PET/CT scan to see if the lymph nodes near the tumor "lights" up. If it does, that means that the tumor is still active, which will most likely mean another surgery. Because I will have to wait at least a month after chemo, the surgery won't take place any sooner than March 23rd. If the lymph nodes do not "light" up, that could mean that we just go back to watching and waiting. After the PET/CT scan, we'll meet with our specialist to see what he recommends.

We continue to both seek, and appreciate your prayers and thoughts as we continue this journey.

Kevin

Platelet count came up

2009-02-02T10:01:00.002-05:00

I just heard from Kevin that his platelet count is up to 102 from 80 last time, so he's okay to proceed with today's chemo infusion. That's an answer to prayer, so for anyone who prayed, thank you!

Roni

Four rounds down, two to go

2009-02-01T17:40:00.003-05:00

Kevin has made it through four rounds of the infused chemo, Oxiliplatin. The good news is that the tumor markers dropped 48% after just three rounds, which indicates that the chemo is having the intended effect of shrinking the tumors and preventing new cancer cell growth. When Kevin goes in for round five tomorrow, they will first run blood tests to see what the tumor marker results are after round four. We pray the markers continue to drop.

While we’re grateful that the chemo is killing “bad” cells, good cells have come under fire as well. A cumulative result of the four infusions that Kevin has had so far is that his platelet count is down. If it goes too low, the doctor may want to hold off on the two remaining chemo rounds until Kevin body’s had a chance to recover a bit. Understandably, Kevin does not want to have any treatment delayed; he just wants to get these six rounds behind him so he can really recover. After each successive round, the peripheral neuropathy has lingered longer and now the fatigue is more intense and is not lifting between treatments as much as it did in December. Kevin also has a bad case of cabin fever, as it’s been too cold for him to even sit on the balcony. Spring – and the sixth round of chemo -- can’t come soon enough!

Please pray for protection of the healthy cells in Kevin’s body, especially his platelet count, and of course for the chemo to continue to be effective against the cancer.

Roni

Chemo Update - Halfway Point

2009-01-16T10:21:00.002-05:00

Today is about my halfway point through my chemo treatment. So far I have had three infusions of Oxiliplatin and two round of oral Xeloda.

The bad news is the side effects. The Xeloda just makes me tired, but the Oxiliplatin is harsh. Right after the infusion, the neuropothy gets pretty bad. The main thing is the pain the cold causes. Eventually the side effects start to wane, but it takes awhile. As a matter of fact, it takes about 8 to 10 days before I can even start to drink anything that is cold.

The good news is that the chemo seems to be working. In December, my CEA tumor marker jumped up to 28.9 (should be between 0 - 2.5). That is a bit of jump from even a a few months ago when it was 10. Fortunately, after just two rounds of Oxiliplatin, that number dropped to 19.8. On Monday when I go in for my fourth infusion, we will have another blood test taken which will show what the new number is after 3 rounds of Oxiliplatin. (The blood test is taken before the infusion, so it only shows the results from the infusion two weeks before).

One of the difficulties I have had is getting some exercise. Because of the cold weather we have been experiencing here in NYC, I can not go outside for a walk. So, I am stuck inside. Because of this, and to help us have easier access to some exercise machines, we got a good deal from Bowflex which included a weight training machine and a Schwinn stationary bike. The bike includes the ability to electronically measure time, distance, calories burned, etc. Over the past week I have been able to set up these machines and yesterday even took a couple of 10 minutes "rides" on the bike. That was enough to wear me out, but that makes sense as I have not been getting ANY exercise for the past month or so. Hopefully this will help keep me in shape and ready to get back to "Life" after the chemo is done.

That is my update for now. Thank you all again for your prayers, thoughts, and support.

Kevin

One Day at a Time

2009-01-02T17:43:00.004-05:00

I know, I know... It's been a long time since I've posted anything, and everyone wants to know what the heck is going on. So here goes.

Since I last wrote, I had the PET Scan I told you about. The area where the tumor is lit up. That was a bad thing. Dr. Esquival recommended doing three months of chemo, using the Xelox protocol. That is Xeloda (which I did earlier this year) and Oxiliplatin, which I had when I was first diagnosed. The Xeloda just made me tired. The Oxiliplatin really does a number on me. Wipes me out for about a week. Dr. Ratner, my oncologist agreed with Dr. Esquival, and on December 8th, I started taking my Xeloda (which is in pill form) and went in for my first infusion of Oxiliplatin.

I take the Xeloda for two weeks, then take a week off. I have the infusions every two weeks. Monday, Jan 5th will be my third infusion.

One of the bad side effects of the Oxiliplatin is a bad reaction to cold. I cannot drink, eat or touch anything cold. If I go outside, I have to have my mouth covered or it starts to feel like my throat is closing up. Some of you may not think this is too bad, but think about it. You cannot drink ANYTHING cold. No cold water, juice, milk, soda... anything. If you do, it's like swallowing razor blades. And even when you are able to start tolerating drinks that are not hot, you can only take one swallow at a time. This makes keeping hydrated a bit tough.

You want something to eat? If you open the fridge, you can't touch anything in there without wearing gloves. You can't turn the cold water on to wash your hands. You have to wait until it heats up before you can put your hands under the water. After my second infusion, I couldn't even hold a metal fork because it felt like I was holding onto ice, and it started to burn. The main effect the cold has is neuropothy. You know when your arm or leg falls asleep and then the blood starts rushing back in and you get that pins and needles feeling? Well, multiply that by like 20 and that is what I have when it is cold. Even though it eventually wears off, I can still feel it in my left arm (where I get the infusion), and in my toes and fingers.

And of course, I am getting this done during the coldest part of the year. So far both days I had infusions it was below freezing outside. And since it is cold, I can't really go outside without really bundling up.

Fortunately, that is the worst of the side effects. There is usually a little nausea a few days after the infusion, but I have some meds to help with that. Oh, and I just feel tired all the time. Other than that, I'm feeling great. :-)

Now on to other news. The day before I found out I had to go back on chemo, I was told I was being laid off from Time Inc., where I had worked for the past 12 years. The bad economy had hit us hard and they were laying off A LOT of people, so it didn't hit me as much of a surprise. I was told that Dec 30th would be my last official day. Apart from not knowing what I will do next, it was really a blessing in disguise. I was able to work it out so that through all of this, we still have my income (thanks to disability and severance). And Roni still has her job there, so we are still covered with health insurance and all the other perks Time Inc. offers.

So that is where things stand for now. I do a lot of laying around watching TV as I don't have much energy to do much else most of the time.

I'm sorry I haven't done a better job of keeping up with this blog, but since I have more spare time, I'll try to post more often.

Thank you all for your prayers and well wishes.

Kevin

Trip to Baltimore

2008-11-09T13:08:00.003-05:00

Well, it's been about 5 months since my last update, and this one is long overdue.

My last post talked about the rounds of Xeloda I had, and how my tumor markers went down (from 8.2 to 5.0). And that my CT scan done on June 26th, was stable. Well, since then, things have changed.

On Sept 11, I had another blood test and my tumor markers (CEA) went up from 5.0 in June to 10.1. My CA 19-9 went from went from 79 to 96. Just to make sure this wasn't some fluke, we had them taken again on Sept 22. CEA was 10.0 and CA 19-9 went up even higher to 106. It wasn't a fluke.

After consulting with my oncologist, we decided to get another CT scan, which I finally had on Oct 31st. That also did not have much good news. Well, it wasn't horrible news, but it wasn't great either. On previous scans, three spots showed up of possible tumor recurrence. On this CT scan, two of those were stable, but one of them doubled in size. It is still relatively small, and thankfully slow growing. Oh, and I have a hernia.

So, with reports and films in hand, we headed down to Baltimore, MD to consult with Dr. Esquival (at St. Agnes hospital), who is one of the specialists for this disease. For those of you who don't know, Dr. Esquival assisted Dr. Sugarbaker when I had my surgery at Washington Hospital Center in DC about 4 and a half years ago. We also met with him in Jan of this year, so he is fairly familiar with my situation.

After some quick poking and prodding, he told us first that he was surprised that my hernia was caused by my bladder. Usually it is the small intestines that cause hernias, but I just had to be different. He said as long as it wasn't causing me any problems, he saw no reason to go in and operate.

The next thing he told us is that even though my original pathology report showed aggressive signet ring cells, and that I had 3 positive lymph nodes, which put me in the "high-grade" category, he was now placing me in the "low-grade" category.

He also told us that looking at the tumor markers and the CT scan, he wasn't quite sure what was going on. He said that there was a lymph node near where the growing tumor was and that he wanted to find out if there was anything else going on. He said I should get a PET scan to find out. If the lymph node "lights up" on the PET scan, he is going to recommend a complete round of chemo. that is 6 cycles of Oxiliplatin and Xeloda (or Xelox protocol). This is what I had originally in Dec 03 to Jun 04, with an operation in between to break it up. And I only had 4 cycles. Two before the surgery and two after. It certainly wasn't fun, and my hope is the lymph node DOES NOT "light up".

If the PET scan is clean, then the doctor said that we just continue to watch and wait. As long as there are no symptoms, there is no reason to go and operate and possibly decrease my quality of life.

So, that is where we stand now. A PET scan with possible chemo, or not. And more watching and waiting. For now, I have staved off another surgery, but barring a miracle, one will most likely be in my future at some point. The good news is that where the tumor is, the doctor said there is absolutely no chance of having an ostomy. And with all of the advancements being made, there is always a chance I will continue to live with this for a long time. And that is our prayer.

Thank you all for your love, concern, prayers, etc. They are more appreciated than you can imagine.

Kevin

Update Long Overdue

2008-06-27T15:20:00.002-04:00

OK, OK. I know it's been way too long since I have updated my blog, and some of you were probably wondering if I was still alive. You can rest assured I am. A lot has happened in the last few months, so this might be a bit long. So let's get started.

In March of this year, we found that my tumor markers continued to rise, and the CT scans showed some tumor growth, albeit slow growing. So I decided to follow the advice of a PMP specialist, and my oncologist to go back on chemo. The chemo I took was called Xeloda, which is taken orally. During the treatments, I took it for 2 weeks on, and had one week off. The main side effect was fatigue. The last few days, I had little to no energy and spent most of the day on the couch watching TV. I decided to start taking it on March 24th, so that the "off" week of the third round would be during our last week of vacation in Israel.

After two rounds, I had a set of tumor markers taken (April 28th), but we didn't get the results until April 30th.The day of the Accident.

For those of you who hadn't heard about that, here's the story. On the morning of April 30th, I was on my way to West Point Military Academy on my Harley Davidson, where I was to meet my boss, and where we were going to get a briefing on how they handle some of the Business Continuity testing. I have a friend who works there, so we were looking forward to seeing how the military would handle emergency situations, and even get a tour of WPMA. It was a few days after I stopped taking chemo, so I wasn't feeling too bad, but I have to admit, I wasn't quite 100%.

When I was about 15 miles away, I came to a "circle" or "round about" for my Aussie and English friends, when I started slowing down. I saw a car in front of me, and kept thinking that it was going to go into the circle. That was my first mistake. When riding a motorcyle, you should always assume the car in front of you is going to do something stupid. By the time I realized the car was stopped, and wasn't going to enter the traffic circle, I was too close to it to stop safely. I hit the brakes, slid, and finally was dumped on the left side. When everything had stopped, I was on the ground with the bike pinning my foot so I couldn't get up. I also realized I wasn't able to use my left arm.

Eventually someone came by, lifted the bike up and helped me up. I went and sat on a traffic gaurd at the side of the road and waited for an ambulance. I realized that I had messed up my arm, but didn't know to what extent. An ambulance took me to a nearby ER, and a state trooper assured me my bike would be towed to a safe location. On the way to the ER I called my boss, who was already at West Point and told him what happened. he quickly met me at the ER.

I eventually found that I had broken and dislocated my elbow and broke my little finger. the put the bone back in place, but because it was broken, it still hurt like the dickens. They put me in a splint, and Roni, who had rented a car and came to get me, took me home. And for those wondering, yes she was upset and also glad that it wasn't any worse.

The next day we went to see an ortapedic surgeon who said he would be able to operate the next day (Friday), which was a blessing because he usually only operates on Monday. So on Friday, we went to Mt. Sinai where he replaced the cap of my radial bone with a titanium cap, and put two pins in my little finger and I went home again with my entire arm in a splint that went from my shoulder to my hand. I had that splint on for two weeks.

The bad part of all of this (besides the broken bones and smashed up bike) was that there was a good chance I might not have been able to go to Israel, and the doctor wouldn't know for sure until a day or two before we were to leave.

Now for the good thing that happened during the day of the accident. We got a call from my oncologist who got the results back from the tumor marker test. After two rounds of chemo, my markers had started to go down. My CEA went from 8.2 to 5.9. Still slightly high, but the drop was significant.

A couple of weeks after the accident, I had the splint removed, and the doctor replaced it with some guaze and an ace bandage for the elbow. He also put a more permanent cast on my hand to keep my finger in place. And although he was slightly hesitant, he did give me the OK to go to Israel for our vacation. What a relief. So the next day we were off to Israel, with my arm in a sling, and a cast on my hand. A week later I was able to take the bandage off my elbow, and even started going without the cast so I could start moving the arm.

We had a great time in Israel, despite my having to take chemo during the first few days of the trip.

Shortly after our return, the hand cast came off, and I started physical therapy to get everything working again. I have been at physical therapy for about 4 weeks now, and have much more use of my arm than I did just a couple of weeks ago. I am expecting to have full use of my arm, but it might take another 3 or 4 weeks. My arm, wrist and fingers still hurt, but that is to be expected.

As for the bike, I have not seen it, but it was towed to a Harley Davidson dealership close to where the accident happened, and it is currently being repaired. Since I wasn't going that fast when the accident happened, I believe most of the damage was cosmetic in nature, and fortunately, the insurance it paying for the majority of the repairs. All I have to do is pay the deductible. I am hoping in another month or so, I will be able to ride it again.

Which brings us to the present.

Two weeks ago, I had another round of tumor markers taken, which was after my 4th round of chemo. We got more good news when the results came back and the CEA had dropped from 5.9 to 5.0. The normal range is 0 - 2.5, but 5 is not horrible, and much better than 8.2. Also the fact that it had dropped that much showed that the chemo was doing its job. My CA 19-9 also dropped from 82 to 79. That marker is still high, but again, the fact that it did not go up, but down was a good sign.

Yesterday I had a CT scan, and in the afternoon we got even more good news. While the scan showed that something was still there, the best part of the report is the line that said, "Comparison was made with a previous examination of December 14th, 2007. There has been no significant interval change." So, I'm not completely out of the woods, but at least it looks like things are under control, and I can take a break from chemo. We will be meeting with my oncologist next week to go over the scan in more detail, but he said he was happy with the results, and that is something that Roni and I are very thankful for.

So, in the last couple of months, we have had some bad things happen, and some good things happen. One thing we have learned is, that's all part of life.

We would like to continue to thank you all for your support and your prayers during this time in our lives. Your love, kindness and caring are all part of what keeps us going and gives me and Roni the courgae to keep fighting.

We are now looking foward to family reunion with my family which will start July 6th, in Wisconsin Dells, WI. My family will be driving from Oregon, while Roni and I will be renting a car and driving from NYC. I'll let you all know how that goes in my next post.

For now, even recovering from a broken elbow and finger, and from the effects of chemo, I feel very blessed to have a beautiful, wonderful wife and all of you in our lives.

Thank you all again.

Kevin

Chemo - Part Deux

2008-03-12T20:43:00.002-04:00

Last week I had a new round of tumor markers taken and the news wasn't good. Both markers continue to rise. My CEA went up from 6.6 to 8.2 (range is between 0 - 2.5) and the CA 19-9 went up from 76 to 82 (range is between 0 - 35).

After my consultations, and CT scans, it still seems that the tumor is slow growing, but something is definitely there. After consulting with my oncologist, and using the advice from Dr. Loggie, I will be starting a new round of chemo.

The good thing is, I will be taking Xeloda, which is a an oral form of 5FU. I had taken this before and it wasn't too harsh on my system. The bad thing is, it's still chemo, and it still means the cancer is back. And in the words of Bart Simpson, "I didn't think it was physically possible, but that both blows and sucks."

All prayers for this next round are greatly appreciated.

Kevin

2nd Opinion

2008-01-08T22:47:00.000-05:00

On Monday, Jan 7th, Roni and I drove down to Baltimore, MD to meet with Dr. Esquival for a second opinion. We were supposed to meet with Dr. Sugarbaker in the morning, then Dr. Esquivel in the afternoon, but it turned out our appointment with Dr. Sugarbaker was never confirmed, so we never did meet with him. It turns out that that was not such a bad thing. We have been hearing rumors that he is looking to start slowing down his practice and might retire. I heard that he is in his 60s. He has helped many people and I think he deserves to take it easy if he wants.

Now, on to what Dr. Esquivel had to say.

When we got there, I went in to get my vitals taken, while Dr. Esquivel had a look at my latest CT scan. He came in shortly after that to examine me, which was basically just poking and prodding my stomach. He then said something to the effect, "You have nothing to worry about", then said he would me us in another room to discuss what saw.

As for the scans, he asked if we had seen them, and said yes, and that Dr. Loggie had already showed us where the "recurrence" was. He said he wouldn't bother then, and we went into a small room to talk.

He started off by saying that he did not want to know what Dr. Loggie said until after he told us what he thought. He then said that currently, he did not think we had anything to worry about for now. He said that after looking at the scans for the past 9 months or so, he did not see any significant growth of tumor, but did say he was not sure why the tumor markers continued to rise, but did not seem too concerned about it.

Something interesting that he said, coincided with something that Dr. Loggie said. Even though my initial pathology report said I had signet ring cells, he did not think I did. He told us that when people are diagnosed with signet ring cells, they usually don't live past 12 months, and here I am, 4 years later. He also said that the second pathology report we had done, did not mention signet ring, something we weren't sure about until Roni came back and looked at the second pathology report and saw that in fact, it DIDN'T mention signet ring cells. Dr Esquivel said that what might have happened was that there might have been a few cells, which were recorded in the pathology report, but in fact were so few, they should not have been mentioned.

Another thing he wondered about was the 3 out of 10 positive lymph nodes from my first surgery. He said if they were really positive, and I did in fact had signet ring cells, I probably wouldn't be here today.

He also agree with Dr. Loggie in that he did not think surgery was necessary right now. He said that because of where the tumor was (spleen and on the back side of the liver), he did not see any immediate need to cut me open. I was glad to hear that.

So overall, it was an encouraging consultation. I am still concerned as to why the tumor markers keep going up, but both Drs Loggie and Esquival do not see any immediate need to do anything. They're not even suggesting chemo right now. I can live with that.

One thing that does have to be done, is a new pathology report from my original surgery. Both Dr. Loggie and Dr. Esquival want to look at the original tumor to find out exactly what is going on. If they confirm that I, in fact, did NOT have signet ring cells, then that will explain some things. We also need to figure out what is going on with the tumor markers.

Well, that's all for now. I'll be scheduling an appointment soon with my oncologist to discuss the consultations with Dr. Loggie and Dr. Esquivel. I'll post again after that to let you know what my oncologist thinks should be done next.

Till then, thank you all again for keeping me in your thoughts and prayers.

Kevin

Never Underestimate The Power of Denial

2007-12-30T20:37:00.000-05:00

No, I'm not talking about the Aswan Dam. I'm talking about the ability to ignore things that can kill you. For me, that thing is cancer.

For the past few months, since we have learned that the cancer seems to have returned, I have vacillated between thinking the worse, and just ignoring the whole thing in hopes it would disappear. Both ways of dealing with this are wrong. But at least with Denial, you don't spend your time wondering "what if?"

So, where do things stand for now?

Roni and I have started down the road of meeting with PMP specialists. A couple of weeks ago, we met with Dr. Loggie in Omaha, NE. We really liked him and appreciate his philosophy of treating the patient and not just the disease. He also said that he is more concerned about giving me the best "Quality of Life" for as long as possible. He also said that includes not jumping into surgery right away as it seems that otherwise, I am doing very well. And apart from having this thing growing inside of me, which left untreated can kill me, I am doing fairly well. I feel fine and am fit. OK, I do need to get back to the gym, but I'm no worse off than many others that don't even have cancer.

In lieu of surgery, Dr. Loggie suggests we try the simplest things first. This means that right now I am starting with just a COX 2 inhibitor (Sulindac - similar to Celebrex). He said he has seen some success with that, albeit very little success. If that doesn't seem to help, we will most likely add Xeloda to the mix. Xeloda is an oral form of chemo, which I was on when all of this began. I tolerated it OK, and it is much easier to take than having an IV stuck in my hand and then having poison pumped into my body.

As for surgery? Barring a miracle (which we continue to pray for), surgery is inevitable. We're just not sure when.

And next week, we are heading to Washington DC to meet with Dr. Sugarbaker to get his opinion, then on to Baltimore to meet with Dr. Esquival to get his take on things. Dr. Esquival trained under Dr. Sugarbaker, and actually assisted him with my surgeries. I know this for a fact because we got a bill from him. :-)

That will give us the opinion of three PMP specialists, and we will then decide who we want to go with.

One good thing about the trip to DC is that we are heading down there on Saturday, Jan 5th and we will spend Sunday, Jan 6th doing some sightseeing and just enjoying the city. My appointments are on Monday, so we will head home Monday afternoon after my last consult. So, sometime after that, I'll post again letting you all know what happened.

Until then, thank you all for your prayers and support. Even though they are not needed as urgently as last time, they are still greatly appreciated.

Kevin

Update Long Overdue

2007-11-05T22:40:00.001-05:00

I noticed I haven't posted since Sept 11, less than two months ago. For those wondering how everything went, I'm afraid the news is not so good.

My tumor markers continued to climb, and the CT scan confirmed what we feared, the tumor seems to be back and growing. Fortunately, it seems to be growing slowly, which gives us time to decide the best plan of action.

We heard back from Dr. Sugarbaker (the doctor who operated on in Feb and July 04) and he is suggesting we just wait and see what happens, and to continue with the normal routine of tumor marker tests and CT scans. I don't feel very comfortable with just waiting though. In the meantime, we are contacting some other PMP specialists to get some more opinions. The trick is, we have to travel to see these other doctors. Two are in Baltimore, and unfortunately see patients on different days. The other specialist is in Omaha, NE. We haven't made any appointments yet, but when we do, I'll post again with more info.

And now some good news. Last month we got our new lease for our apartment, and they wanted to raise the rent almost 17%. That was way too much, especially for the small 1 bedroom apartment we have. After looking around, we have discovered that we can no longer really afford to live in Manhattan, so we found a new apartment in Riverdale (which is part of The Bronx). Although we are moving out of "the City", we will still officially be in New York as The Bronx is one of the boroughs of NYC. The rest of the good news, our new apartment is much bigger than our current apt. We will have two bedrooms and two full bathrooms. Besides closets in both bedrooms, there are three other closets (1 linen closet and two other large closets). This means we will have much more space and will finally be able to put everything away, and all of this will cost us about $200 less than what we are paying right now. And the bonus is, we'll have a balcony. That is one thing I am really looking forward to.

So right now, we are in packing and moving mode. Once we get settled in the new place, we will have to get in "meeting with doctors" mode. Something I'm not especially looking forward to.

Needless to say, both Roni and I were disappointed to hear the news about the recurrence, especially as I had been doing so well, and had made it to the 4 year mark of being diagnosed. But we have gone through this before and know what to expect, which is one reason I'm not looking forward to it. :-) I don't relish the thought of more chemo and another surgery at all. But I've done it before, and will do it again if need be.

We have been praying for a miracle, and we cherish all of your prayers as well. Sorry again for not posting sooner, but aside from moving, I've been trying to ignore anything to do with cancer. As we say, never underestimate the power of denial. :-)

Kevin

One More Week...

2007-09-11T07:21:00.000-04:00

... till my next tumor marker test.

Some people have been asking how I have been doing, so I thought I would put up a quick post to let you all know.

I'm doing pretty good, all things considered. Feeling fine, and trying not to worry about something I don't know of for sure. Although I haven't been in about a week, I have been going back to the gym. I haven't gone riding in a few days because the bike is at the dealer's for its 5000 mile service. I hope to pick it up tomorrow and will probably have 400 more miles on it by the end of the weekend. So apart from the fact that I MIGHT have recurrence, I'm doing pretty well.

I have my tumor marker test next Monday, then will schedule my next CT scan shortly after that. Once I get those results, I'll let post again. Until then, I'm going to try and not to worry about things. Of course, sometimes that is easier said than done. :-)

Kevin

Possible Recurrence...

2007-08-06T22:56:00.000-04:00

One day after my last post, I had my CT scan. That same day I shipped the films off to Dr. Sugarbaker to get his take on things.

According to the report made by the radiologist that read the films, there was only one spot of concern. The spot was on the small bowel and mesentery (the tissue that connects the small bowel to the back wall of the abdomen). This was a little disconcerting, but I wanted to hear back from Dr. Sugarbaker before I started worrying about anything.

A few days after the scan, I got a call from Dr. Sugarbaker's office, and the news wasn't good. According to Dr. Sugarbaker, he saw three spots that could be recurrence. One spot is on the stomach, one on the spleen and one on the omental bursa. Dr. Sugarbaker suggests surgery, which would result in me losing my stomach and spleen, and that would be the easy part. Supposedly the hardest part would be getting the spot on the omental bursa, which would require going through the diaphragm, and being careful not to nick the aorta.

The strange thing is, he didn't even metion anything about the small bowel and mesentery, so I guess he didn't believe that was anything to worry about.

Needless to say, this was certainly NOT the news we were hoping for. Being told that I have a recurrence, and the thought of going through yet another surgery was pretty devastating. I just started going through everything that I would have to do again like drink the go-lytely (the really yummy stuff that cleans out your bowels for surgery, and by "yummy", I really mean yucky), go through the surgery, deal with the NG tube (have I ever mentioned how much I hate the NG tube?), go through recovery in the hospital for 2 - 3 weeks, then probably that much time again at home, get the stitches removed, and of course, learning to eat without a stomach.

So, what to do. Last week Roni and I met with my oncologist to discuss my options. The options are 1) wait a couple of months and have another CT scan, 2) try chemo or 3) go for the surgery. We have decided for now to wait the two months and then have another round of tests (tumor markers and CT scan). The main reason for this is so Dr. Sugarbaker will have another set up films to compare with the last ones, and if something is there, then we can determine what to do from there. But we are praying that the spots that are there now, will either be stable, or even better, they will completely disappear. We believe G-d can, and does do miracles, and we pray that He will do one for us.

Personally, I'm doing OK. Just trying not to dwell on "what could be" and just live the best I can. I've been riding the Harley, and even going to the gym about 3 times a week. Sometimes the fears creep in, and I have to be careful not to go down that road, thinking of the worst situations. This is not always easy to do, but I just remind myself that none of us are guaranteed tomorrow, so I am thankful everyday for all that I have, I live in a great city, have a good job, I ride a Harly, and most importantly, I have a great and beautiful wife.

Good News & Bad News

2007-07-22T21:48:00.000-04:00

On Friday the 13th, I went in for my blood tumor marker test, and on Monday, I got the results.

First the bad news. My tumor markers went up again. My CEA went up to 5 (with the range being 0 - 2.5) and my CA 19-9 went up to 52 (range is 0 - 37). Now, that in itself is not an indication that the tumor as returned, but the fact that the markers have continually risen over the past year could fall nicely into the bad things category.

The next step is a CT scan, which is scheduled for tomorrow (Monday). We're praying that the scan will show nothing, and the fact that the markers went up is just a fluke. I'll post again after I get the results.

Now, the good news. As you may remember from previous posts, my triglycerides were extremely high. About 6 months ago, they were up to 1140 (they should be below 150). After being on 1 gram of Niaspan for three months, the went down to 668. My doc had my up the prescription of Niaspan to 2 grams per day, and with this last test, they went down again to 406. My overall cholesterol also went down to 146 (down from 200 six months ago).

So, how am I doing with the high tumor markers? I must admit when I first got the results, I started to get scared. All the fears of recurrence started flooding my mind. Will I need more chemo? Will I need another surgery? Will I end up with a permanent ostomy? One of the things about having cancer is that little nagging voice in the back of your brain, trying to convince you the worse is going to happen.

Even though nothing has changed, and I don't have any results of the CT scan yet, I am doing better. Emotionally, I'm a bit nervous about the scan and the tumor markers, but I also reminded myself that no one knows what will happen to them. None of us are guaranteed tomorrow, so we need to live life and enjoy it. I'm thankful for my wife, my friends and family and the fact that right now, I have one more day.

Of course we are praying that everything works out fine. G-d has been very good to us, and we can do nothing more than to put this situation into His hands, and pray that He will continue to give us the strength we need to get past this hurddle.

And it doesn't need to be said, but I'll say it anyway, all of your prayers and support are welcomed and cherished.

Kevin

3.9, 158, 668

2007-04-19T19:00:00.000-04:00

To most people, those numbers mean nothing, but for me, they were good news.

Two days ago I went in for my tumor marker blood test. One thing the doc was more concerned about was my high triclycerides and cholesterol. With the last test, my cholesterol was 200 and my triclycerides were 1140. For those keeping score at home, triclycerides should be 150 or less, so yeah, it was VERY high. I started taking some medication and fish oil tablets and this time my cholesterol was 158 and my triclycerides dropped to 668. Still high, but it dropped a lot. I checked with my primary care physician and he suggested upping the dosage of the Niaspan I have been taking. I just refilled it, so I will wait a month before taking a higher dosage. With that, hopefully everything will be within limits. I'd hate to beat cancer just to have heart problems. Besides, I promised Roni that I wouldn't die of a heart attack. :-)

As for the 3.9 number, that was my CEA marker. The normal range should be 0- 2.5, so it is high, but last time it was 3.7 and a rise of 0.2 after 3 months is negligible, so I'm not worried about it.

For those wondering about the bike, it's great. I love riding and being able to get back on the road has been good therapy. This weekend is supposed to be nice (high 60s and sunny), so Roni and I are planning on riding to Drexel Hill in PA to visit some friends from our PMP support group. Another good thing about the bike is being able to visit other PMPBB members in the area.

Well, that's about all for tonight. Thank you all again for your prayers and thoughts.

Kevin

At the dealer

2007-04-01T12:29:00.001-04:00

At the dealer
Originally uploaded by kevkersey.

On Friday afternoon (I was supposed to pick it up Friday morning), I picked up the new bike from the dealer. It was a beautiful day, although a bit cool. I ended up riding about 115 miles through some scenic New York country side.

I also stopped by and met a couple whose husband is a cancer patient. We had a good chat adn it was good to see him doing well, even though he has been having some problems.

From there, I headed home. I crossed a bridge coming down the Taconic State Parkway and glanced over to the right to see a beautiful sunset and thought to myself, it doesn't get much better than this.

It was great to on a bike again. I'll post some more pics later.

Kevin

3 Years & 1 Day Post Op

2007-02-19T19:47:00.000-05:00

On Feb 18th, 2004 I spent 10 hours under anesthesia while Dr. Sugarbaker sliced me open, dug around in my innerds looking for the cancer cells that had been threatening my life, and poured chemo into my abdomen.

Sometimes it seems like that part of my life never happened, mainly because I was hopped up on pain meds at the time and don't remember a lot of what happened. :-) So, every year around this time, I read back through this blog and remind myself of where I was, and what has happened to me since then. I guess the fact that it seems like a whole different life is a good thing, but I think it's also good to remember so that I never become complacent with what I have.

The last three years has not been all fun, there's been a lot of hard times, and scary times, but it has also made me realize all that I have. A beautiful, loving wife, good friends, and a great family. We have had the opportunity to travel to some fantastic places like Tucson, AZ, Key Largo, FL, Alaska and Israel. And for our 15th anniversary, next week we'll be in Nassau, Bahamas. It's been a great life, and I am always thankful that I have been given more time to appreciate it. I just pray that I have many more years, especially since we'll be getting our new Harley in a couple of months. :-)

Kevin

Whew!!

2007-01-18T19:46:00.001-05:00

Well, I had my CT Scan done this morning. Drank the gallon (at least it seemed like a gallon) of the contrast, got my scan and they finally let me go.

I thought I wouldn't get the results until tomorrow, but my oncologist called me today abour 5 PM. Because of the rise in tumor markers, at first I started to panic. Then he said, "I just got the report, and there was no significant change." I said, "Whew, thank you!!" He replied, "I thought you might like to know." I said, "Yes I did, thank you very much."

So, that was the good news. And I was able to breathe again.

For those who have never seen a CT scan report, here are some of the more interesting comments:

-- Evaluation of the supraclavicular and axillary regions reveal no evidence of lymphadenopathy.

OK, I have no idea what that means, but I guess it's a good thing.

Here's the last two comments:

-- Healing left posterior rib fracture (I never even knew I had a rib fracture.)

-- Comparison was made with with a previous examination of July 28th, 2006. There has been no significant interval change. (That was the best part).

So, with that good scan, I'm not going to worry to much about the rise in my tumor markers and just wait to see what the next round of tumor marker test show.

Thank you all for your continued support and prayersl. I never take any of them for granted.

Kevin

A Couple of Things...

2007-01-15T20:56:00.000-05:00

First thing, I had my tumor marker test done last Thursday. I haven't seen the report, but my oncologist called today to let me know some of the results. The liver functions were fine, my cholesterol was 200 (that went up), and my CEA was 3.7. That was the bad part. The normal range for CEA is 0 - 2.5. The highest it ever got before was 3.1 and last time it was 3.0. So it was a bit of a jump. My oncologist didn't seem too worried about it, and said that I might want to get another test in a couple of months. I might give Dr. Sugarbaker a call tomorrow and see what he says about the jump.

I also have a CT scan coming up, so if that is stable, then i won't worry too much about the CEA numbers.

The other thing is my complaint about blasted insurance companies. I'm thankful that they pay my bills, but they sure make everything else difficult. With both of my surgeries, my insurance company never paid the full amount the first time. They paid part of it, then I would get a bill from the hospital, have to call the insurance company, get them to resubmit the bill and finally pay it all the second time. It got so bad that a couple of years ago the anesthesiologist sent my bill to a collection agent because my insurance company didn't pay. I called the insurance company and they said they would pay it.

So, jump ahead to last week. I get a call from the collection agency again saying the bill that the insurance company didn't pay the first time, it overdue. Turns out, they never paid it. Now, I have to wait for the information from the collection agency, call the insurance company again, then hope that they finally get things right two years later.

Stupid insurance company.

Medical Update

2006-10-13T07:46:00.000-04:00

It has been a couple of months since my last update, and I suppose in a way that is a good thing. Anyway, here goes...

A couple of weeks ago, I went to my PCP (Primary Care Physician) for my yearly physical. Everything looked good, except for my triclycerides. They were still high, even though I had been taking Tricor to lower them. My doctor suggested a new drug to try, so I am now taking Niaspan. Hopefully that will lower the triclycerides and get my cholesterol in check. The good news is that my overall cholesterol is only 189.

Then on Tuesday of this week, I went to my oncologist to get my tumor markers tested. And, thank G-d, I passed. My CEA dropped to 2.9 (range is 0-2.5). Even though it is still out of range, it has not gone above 3.0 in a year, so I am not concerned about it.

One more thing, this month is three years since all of this began. As a matter of fact, three years ago today I was still in the hospital, and we had not yet learned that I had cancer. So, here I am three years later with stable CT scans and clean tumor markers, and we thank G-d constantly for what He has done for us. Roni and I are praying for many more years together.

Now for some more good news. You may remember that last year around this time, a cab crushed our motorcycle and totaled it. We decided to hold off getting a new one for awhile and I was considering waiting until next year and then looked for a used bike. But then I saw that Harley Davidson upgraded their 2007 models with a larger engine (from a 88ci to 96ci) and a 6 speed transmission. They may not mean much to some of you, but to me that was enough for me to want a 2007 model instead of a used one. So in August, I went and placed the order for our new Harley Davidson Electra Glide Standard. The bike is a bit bigger than our old one, but should be much nicer for longer trips. We should be getting it in April, just ready for the Spring riding season.

That's all the news for now. Thanks for keeping up with my story and thank you for your thoughts and prayers.

Kevin

Stable

2006-07-31T20:49:00.000-04:00

This has become one of my favourite words. It's not quite as good as "clear", but it's the next best thing.

So, why do I bring this up? 'Cuz I got my results from my CT scan today, and everything is "stable". Whoo Hoo!!

I'll admit I wasn't quite as concerned as I have been in the past, but there's always that nagging thought in the back of my brain that asks, "what if?" Fortunately this time, I didn't have to answer that question.

So for now, everything is still good. Three more months till my next blood test, and six more months till my next CT scan.

Until next post, this is the Kevinator, siging off...

Time For An Update

2006-07-13T01:45:00.000-04:00

Well, it's that time again. I had my blood tumor markers taken this week. On Monday as a matter of fact. I wasn't that anxious about it, but I wasn't totally calm about it either. There's always that nagging feeling in the back of my mind that keeps asking "What if?" Fortunately this time, I didn't need an answer to "What if?" My tumor markers were fine. Whew!

My CEA was 3.0. Still slightly out of range, but it hasn't really moved much in 6 months. In Feb it was 3.0, then in April it went down to 2.9, then this week back up to 3.0. The high range is really 2.5, but the fact that it hasn't been moving up farther is a good thing.

My CA 19-9 went down from 34 to 25. I was starting to get a little worried about it climbing, but now that it dropped, I feel better. The range on that is 0 - 37.

I have also started to have my PSA tested (which is a marker for prostate cancer) and that has been fine as well. This time it was 0.81. The range is 0 - 4.0.

The only bad news was that my triclycerides were still high. My overall cholesterol is fine, well below 200, but the triclycerides are a problem. So, I just started taking Tricor, a prescription medicine that should help lower them. We'll see what happens with the next blood test in 3 months.

So, once again, I can breathe easy. Which is good, 'cuz where going on vacation. Today, Roni and I fly to Seattle, WA, where we'll stay over night, then board a Royal Caribbean cruise ship on Friday for a cruise to Alaska. It's a cruise with all of my family, so it should be fun. Really, I'm not kidding. :-)

It's a seven day cruise, and after the cruise, we spend another night in Seattle then come home July 22nd.

Now for some other good news. I have been published in a magazine! Well, I didn't write the article, but my blog was highlighted, and one of my posts was published.

A few months ago, I got an email from person who works for CR magazine, which is published by American Association for Cancer Research (AACR). She asked if I would like my blog to be mentioned in the magazine and I said of course. Any opportunity to get publicity for our PMP Awareness site, and our PMP BellyButton group is gladly taken. So the article was done and the magazine was just recently published. Here is the link to the magazine:

CR Magazine

And here is the link to the article:

Cancerblog - Online Catharsis

It's a good magazine and I hope you enjoy the article.

That's all the news for now. When I return from vacation, it will be time to schedule a CT scan. Oh joy. :-(

When I get the results for that, I'll let you all know.

Thank you to everyone who keeps me in your prayers and thoughts. I am forever grateful.

Kevin

Another Blood Test Down...

2006-04-27T21:30:00.000-04:00

...only 1,243 to go.

OK, maybe not that many, but sometimes it seems like that. Anyway, it was good news.

I went in Tuesday morning and had my blood drawn. The basic tests they do there were all OK. They then have to send the blood out for the tumor marker tests. Anyway, I called this morning and spoke to the doctor who assists my oncologist. She told me the CEA was 2.9 (down from 3.0 last time) and the CA 19-9 was 34 (up from last time, but still within limits). So, that was the good news.

One bad thing though, even though my overall cholesterol was 158, my tryclicerides were a little high. OK, OK. It was VERY high. So, I have to talk to the doctor about that. Maybe get some medication to help lower it. In the meantime, I plan on cutting back on the sodas and the red meat and try to eat more "good" fats. Hopefully the next test will show some improvements.

Apart from that, I've been feeling OK, although I do seem to get tired easy. I'm hoping that it's just because of the weather. I have been trying to walk more, and today I walked for about a mile at lunch time. Now I just have to get back to the gym.

Well, that's it for now. My next blood test and CT scan will take place in about 3 months. I'll try to post before that to keep you all up to date on how I'm doing.

Kevin

Two Years and Counting...

2006-03-02T22:45:00.000-05:00

Feb. 18, 2006. That is the two year anniversary of my MOAS (Mother Of All Surgeries) and I am still alive. That's a good thing.

Even though there have been a couple of small scares, for the most part, everything is OK.

I'm hesitant to say great, because my scans have been "stable" but not necessarily "clean". "Clean" would be great, but as far as I'm concerned, "Stable" is pretty darn good.

Because this cancer is rare, I only know a few people who have survived for 5 years or so. With the advances made though, if caught early enough, I believe that more and more people will be surviving longer and longer. I just continue to pray I will be one of them.

And Now Some Good News

2006-01-30T17:48:00.000-05:00

Feb 18th will be my 2 year anniversary since my MOAS. Some days I even forget I ever had cancer. Today was not one of those days.

Today I had my bi-annual CT scan. This is usually one of the most anxious times for me. The blood tumor markers are a little anxiety producing, but not as bad as the CT scan. While the tumor markers can flucuate over a period of time, the CT scan shows what is going on in your body.

Anyway, getting to the results, everything is STABLE!! WHOO HOO!!

Now I can breathe again until the next scan in 6 months.

As for the blood tumor marker tests I had last Monday, those came back OK. Not great, but not bad either. The CEA was 3 (normal range is 0-2.5). I'm not overly concerned as it has gotten higher than that before, then went down again after a few months. So, until we see it keep going up, I'm not going to worry. The CA 19-9 was 27 (normal range is 0-37).

So, so far so good.

BTW - Roni and I went to FL for a week's vacation and had a pretty good time. It was pretty windy so we weren't able to do some of the activities we wanted to, but we were able to relax, ride a motorcycle, wrestle some gators (and by wrestling, I mean take pictures of), and enjoy the warm sunshine while it was freezing cold in NYC. I hope to have some pictures up soon.

Thank you all for your prayers and support. I don't know how Roni and I would be able to handle this without all of you.

Kevin

Goodbye Bob...

2006-01-23T22:13:00.000-05:00

Our friend and fellow PMP warrior, Bob Peterson passed away this morning. Roni and I had the pleasure of meeting Bob and his wife a couple of weeks ago when we went to Chicago, specifically to meet him. We went because a week or so before, he announced that he was going under hospice care, and that meant only one thing, he didn't have much longer.

Bob fought PMP for over four years, and that was after being misdiagnosed and mistreated for a long time. When he finally started seeing a specialist, his cancer was so advanced and his tumor so cemented to his abdomen, that his doctor put him on oral chemo for years, hoping to soften the tumor enough to surgically remove it. When Bob finally went in for his MOAS (Mother Of All Surgeries), the tumor was not softened enough, and the doctor was only able to remove part of it.

After being on TPN (due to a blockage) for months, Bob finally decided that his Quality of Life was just not what he wanted. He decided that he did not want to continue suffering. He wanted to go out on his terms. And so he did.

Now, he is truly cancer free.

Bob was a friend, a fellow PMP warrior and an advocate for people to get the right treatment. He helped more people than he would ever know, and most likely helped save a lot of lives.

Please say a pray for the family he left behind. He will be greatly missed.

Goodbye my friend. Rest in G-d's peace.

When Good Things Happen to Good People

2005-12-11T21:23:00.000-05:00

A while ago, I wrote a post called “Why do bad things happen to good people?” I reflected on why cancer happened to me. I wondered why people who don’t deserve things like this, have to go through it. I really didn’t have any answers. I don’t think anyone does. And if someone says they do have an answer, be wary. Be very wary.

But this time, I want to talk about something different. A couple of my favorite shows are “Extreme Makeover – Home Edition” and “Three Wishes”. OK, sometimes they might seem kinda sappy, but I’ll admit, I cry during almost every show. Why? Because I get to see “Good Things Happen to Good People”. People who have been through experiences that none of us should ever have to go through. And these people seem to have gone through these experiences with a strength that just doesn’t seem normal. But it is a strength I see every day in the support group I belong to. Don’t get me wrong, we also experience fear, depression, fear, pain, and, did I mention fear?

But a therapeutic part of having cancer is helping others get through what you have already been through. Being able to answer questions, alleviate people’s fears, point them in the right direction, and comfort those that have experienced loss, makes having to go through surgeries and chemo all seem worth it. I wouldn’t want to go through these things again, but since I have, I want to be able to help others.

Speaking of our support group, if you ever meet other people with PMP, please point them to our site. It was created to help those who need help. Our goal is to make sure good things happen to good people.

Good News - Bad News

2005-10-18T17:55:00.000-04:00

First the good news.

I got a call from my oncologist this morning and he told me (well, he told Roni, I was out on an errand) that the tumor markers have not changed. Although I don't know the exact numbers, and haven't seen the report, I'm relieved to hear that they are normal.

UPDATE - 10/19/05 - I just received a copy of my tumor marker test. The doctor was wrong when he said the tumor markers have not changed. THEY ACTUALLY WENT DOWN!!! That's right, the last CEA level was at 2.5 (the high end of the scale), this one was at 1.9!! That's even better news.

Now for the bad news...

Sad Site, originally uploaded by kevkersey.

That's my bike crushed between the cab to the right and the van to the left.

On Sunday morning, at about 2:30 AM, I woke from my sleep when I heard some yelling outside. That isn't unusual, but usually the yelling only last for a few seconds. This time it kept up. Then I heard loud popping sounds. Gun fire? Well, we do live at the bottom of Spanish Harlem, so I wouldn't be surprised. I thought I'd better have a look.

I looked out our bedroom window, where I am able to see my bike parked. What I saw was a cab pinning my bike to another car. As I was still waking up (after only a few hours sleep), I needed a better look so I went to our living room window where I could see out better. Sure enough, there were cops and the FDNY all over the place and what looked like smoke coming from around the corner.

I got dressed, grabbed the digital camera and ran downstairs. In front of our apt, another cab had run into the bus stop and caught on fire. It was put out by the time I got there. As for my bike, it was originally covered, but by the time I got there the FDNY had removed the cover and was trying to figure out how to disconnect the battery. I told them it was my bike, and would do so. I ran back up for my keys (to turn off the alarm) and came back. Roni came down to see what was going on. I took off the seat and disconnected the battery. I also got all of my belongings out of the saddle bag.

I then spent the next 5 and half hours calling the insurance company, my roadside assistance (to have the bike towed), went with the tow truck to the wreckers, walked about 10 blocks from the wreckers to the subway, rode the subway from Queens back into Manhattan, which left me off ten blocks from my apt because the local subway wasn't running (grrrr...). I finally got back home at about 8:30 AM and promptly fell asleep for about 2 hours.

Today, I spoke to the insurance company who said the bike was totaled and will be taking it from where it is now to their shop to determine the value. I wanted to get a new bike anyway, so maybe this is my opportunity. :-) We'll see.

For more picks of the accident, click here.

Time for an update...

2005-10-09T21:34:00.000-04:00

OK, it's been awhile since I've posted an update to the blog. I have no excuse. So here goes.

First of all, if you remember, there were some "abnormalities" on my last CT scan. My oncologist said that I shouldn't worry about them, so I didn't. But when I went in to discuss the scan with him, he said that he received a letter from Dr. Sugarbaker, who said it looked like it could be the return of disease. That's a phrase you never want to hear. Well, needless to say, I was stunned. All these things started going through my mind, "Will I need another surgery?", "Will I end up with a permanent ostomy?", "Will I need more chemo?" Once those thoughts start, it's easy to spin down into despair.

A day or so later, I started to feel better. Especially after I started thinking about what the CT scan showed. Two of the abnormalities were unchanged from the last scan, and the one that did change, was on the liver. Now, I haven't gone back and checked yet, but if my memory serves me right, the thing on the liver was there from the very beginning, and Dr. Sugarbaker said it looked like scar tissue. I don't know why it would have grown, but who really understands all of the intricacies of the human body?

Anyway, Dr. Sugarbaker suggested another CT scan in 6 months, but my oncologist suggested another tumor marker test in a month (which is about now) and another CT scan in about 3 months (about 2 months now). So, I need to call and make an appt for my tumor marker test soon,.

Aside from that, I am still dealing with learning to be a cancer survivor. While it may seem that should be an easy thing, I really believe that PTSS is a part of what I am dealing with. Not as bad as what soldiers or others in life-threatening situations go through, but maybe to a lesser degree. While I am thankful for being alive and surviving all that I did, the fear of cancer is something that always dwells in the back of my brain.

On a more positive note, I got a new primary care doctor about a month ago. While going over my medical history with him, and after a quick physical, he suggested a new medication (after he found I had my gall bladder removed) which was supposed to help with the diarrhea and multiple bowel movements. It is called Cholestryamine, and while it kind of resembles Tang flavored mud, it has really helped in reducing the amount of diarrhea and the amount of BMs I have a day. Heck, at times I even feel almost normal again. Before that, I would say I felt about 80% normal, now it is more like 90%. So things are looking up in the area.

Well, that's about it for now. I'll write again after I get my next tumor marker test.

If you are a praying person, I'd appreciate prayers for my next tests (blood and CT scan), that the tumor markers will be normal and the "abnormalities" will either stay the same, or decrease (or better yet, just disappear). Thank you all again for your continued support and prayers. No matter how long I live, I will never be able to say "Thank You" enough.

Kevin

Roni here

2005-07-20T09:45:00.000-04:00

I know I haven't posted for awhile. Kevin's being doing a great job of keeping everyone up to date, so why be redundant?

However, after reading Kevin's recent post, I want to echo Kevin's thanks to G-d (I hope to one day soon post a list of all of the miraculous events--some of which we did not include in the blog postings when we were in the thick of things).

I also want to add my thanks to Kevin's for all who prayed for us, encouraged us, brought us food, drove us, stayed with us at the hospital. The list goes on and on. But we're mostly grateful for the prayers, because we fully believe it's because of prayer that Kevin is here today.

Lastly, I just want to say how proud I am of my husband. I have seen his soldier's strength and resolve from the very beginning and throughout his long, difficult battle. I saw his faith, already firmly established in a bedrock of carefully considered truth-seeking, continue to strengthen and grow. Normal moments of self pity were fleeting, and not something in which he indulged himself. In many ways, he has been my stable, dependable source of strength as I struggled in the role of caretaker. In other words, he was Kevin.

Crises tend to bring out either the best or the worst in people. Cancer brought the very best Kevin to the forefront, and I am proud to be his wife and grateful for the lessons he is still teaching me. He is my hero.

Roni

Test Results

2005-07-20T05:53:00.000-04:00

"O LORD, You have brought up my soul from Sheol;
You have kept me alive, that I would not go down to the pit.
Sing praise to the LORD, you His godly ones,
And give thanks to His holy name.
For His anger is but for a moment,
His favor is for a lifetime;
Weeping may last for the night,
But a shout of joy comes in the morning."
(Psalm 30:3-5)

Well, the test results are in, and we still have "good news".

First, my CEA tumor markers went down from last time. If you recall, Roni and I were concerned that they had continued to rise since my initial surgery with Dr. Sugarbaker in Feb of 2004. In Feb of this year, the CEA results went up to 3.1, 0.6 past the acceptable range of 0.0 - 2.5. We had the test done again a month later, and it went back down to 2.7. Roni and I breathed a sigh of relief. Well, this time it was even better, it went back to 2.5, back into the normal range.

With that out of the way, the next thing was the CT scan. I had that done Monday morning.

To be honest, I really hate having a CT scan. You have to drink about a half gallon of "contrast", which could either be barium, or this other mixture which contains white cranberry juice. The white cranberry juice is just slightly better than the barium. Slightly. After you drink the "stuff", you lie down and they hook up an IV with more contrast that they pump through your veins. This isn't horrible, but I'm really tired of needles and IVs. This time they gave me the IV in probably the most painful spot they could. It's now Wednesday and it's still sore. But, the scan went quickly and I was soon on my way.

I called my oncologist yesterday (Tues) and asked if he had the results. He did and said that for the most part, everything looked good. There was just one thing that he didn't understand and wanted to confer with Dr. Sugarbaker. Unfortunately, Dr. Sugarbaker is busy with surgeries for the next few days, then I believe he is going overseas to do some training. So it might be awhile before we get a good answer for my oncologist's question. But he said with the CT scan, the tumor marker result and the exam he gave me last week, he was very happy and said "I think you're getting better." Always good words to hear from a doctor.

So, after 17 months since my MOAS (Mother Of All Surgeries), and a year after my last surgery, things are looking good. My intestines are still not fully healed, and I still have problems with diarrhea and having to use the "loo" about 5 times a day, but I am much better than I was just a few months ago.

I would just like to thank everyone again (I'll never be able to thank you all enough) for all of your prayers, good thoughts, support, etc. Roni and I wouldn't be where we are if it wasn't for all of our friends and family that helped us through the hard times, to get to today.

Kevin