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
Monday, December 20, 2010
Thursday, December 02, 2010
December 2 Update
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:
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
Best,
Roni
Monday, November 22, 2010
Latest from Roni
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.
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.
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.
Wednesday, November 03, 2010
Update from Roni
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
Sunday, October 10, 2010
Another Anniversary
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. :-)
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. :-)
Friday, October 08, 2010
Roni's Musings and Reporting
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
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.
Thursday, October 07, 2010
"You Beat This!"
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!
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!
Sunday, September 26, 2010
Dwelling in a Sukkah. Physically and Spiritually.
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."
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."
Thursday, September 23, 2010
News Update from Roni
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!
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!
Saturday, September 11, 2010
Panic Attacks
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.
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.
Tuesday, July 20, 2010
Macrobeads - 32 Days Post Op
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.
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.
Sunday, June 20, 2010
Pain under control...But still tired
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.
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.
Friday, June 18, 2010
Pain still pretty bad
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
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
Kev's surgery was succesful with no complications. Some more info on
the blog.
the blog.
Roni
-----------
Sent from my iPhone.
Surgery went well
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.
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.
Thursday, June 17, 2010
Surgery is Scheduled
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
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
Tuesday, June 08, 2010
Pain Control, Macrobeads & Sleep
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.
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.
Wednesday, June 02, 2010
Australia - Part 3
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.
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
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.
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
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.
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
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
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
Sunday, May 30, 2010
"Funny, You Don't Look Jewish"
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
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
Friday, May 28, 2010
Clinical Trial Testing - Part II
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.
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.
Monday, May 24, 2010
Clinical Trial Testing - Part 1
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.
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.
Friday, May 21, 2010
Clinical Trial Update
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
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
Tuesday, May 18, 2010
Freedom of Spirit
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)
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
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
Wednesday, April 14, 2010
Macrobeads - Part II
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
Tuesday, April 06, 2010
Macrobeads
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.
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.
Thursday, April 01, 2010
Why I Ride
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.
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.
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