This was an email that Roni sent out on 3/19/2003. Due to technical difficulties, we are just now posting it on the web.
I know people have been wondering how Kevin is doing now that he's home from the hospital, and I'm sorry we haven't updated the blog.
Kevin is recovering, but the recovery has been slower, harder and more complicated than we anticipated. He bounced back so well from the surgery in Oct., that I think we both expected a somewhat slower version of that recovery from this bigger surgery. What both of us forgot to take into consideration was that in addition to recovering from a MAJOR surgery, he would also be recovering from the affects of a massive dose of very potent chemo.
The first week back Kevin had no appetite and no energy to eat. He was already underweight and couldn't afford to lose any more weight, but he was too lethargic to eat enough. So we visited the doctor to have them check his blood count. They found that he was still anemic from the chemo, even after the blood and shots he was given in the hospital. While still the Drs. office, he was given two Procrit-type shots for the anemia and they sent us home with cases of protein drinks to add to the stash I already had. Between the boost from the shots and taking a look at the nutrition numbers -- he was burning more calories each day than he was taking in -- he started downing enough protein drinks, peanut butter, etc. to begin getting back some energy. Last night, he even completed a series of physical therapy exercises, much to my relief. For awhile there, i was afraid he'd end up back in the hospital on intravenous nutrition.
Today I went with him to the doctor's office to have his sutures removed. We both expected it to be a slightly painful, but fairly short procedure. For reasons i won't bother to go into, it turned out to be a very painful long ordeal. Poor, poor kevin -- it was just awful. I got him home and pampered him as best I could. I pampered myself a bit while i was at it, I'd had a hard day emotionally.
While at the Drs. office, they took another blood test and were relieved that his platelet count, though still high, had come down significantly. It was only then I realized something had been up they hadn't told us. Turns out his platelet count had been "alarmingly" high, putting him at risk for blood clots. I still can't get over the fact that the doctors did not tell us at the time that they were alarmed -- though I know by now that they never do until after the fact. This is about the fifth time since October's ER visit that I have learned after the fact just how "at risk" Kevin has been. Maybe some people don't want to know, but I can't take one more, "I could have lost him last week and didn't even know it," type of experience. Today I looked the doctor in the eye (a very nice woman filling in for our oncologist, who is on vacation) and asked her, "Is there anything that you are alarmed about now, because if so, i want to know." She assured me that Kevin's blood counts, while still not in the normal range, were out of the "at risk" range and continuing to move in the right direction and that there was nothing else she was overly concerned about.
Even though removing the sutures was an ordeal, the doctor and nurse were wonderfully caring, patient and as gentle as they could be. They dressed the wound and asked us to come back tomorrow. The doctor just wants to check the sites where the stitches had been to make sure they don't show any signs of inflammation, then give him a clean dressing. They will also arrange to have a visiting nurse come on the weekend to change the dressing again and just make sure no infection is developing. They assured us this is just a precaution. They would hate for infection to occur over the weekend when the office is closed.
It's been hard coming down from the high of a better than expected prognosis to face a harder than expected recovery. Now we're working on readjusting our expectations so that we won't feel frustrated and disappointed about the phase we're in.
We just need to go back to the lesson of one day at a time we started learning in October, and look for the joy and victory that is there in each day. And we need to continue to ask for your prayers; that's hard for me, after having reported such a miraculous outcome. Those miracles happened, and the fact that kevin is still alive and has a favorable prognosis IS the result of answered prayers and series of miracles. But there's still a ways to go, and we still need your prayers for patience, strength and healing.
Thanks for reading. Sometimes we just feel like wining, and have to remind ourselves to be grateful. But when we remember all G-d has done, we ARE grateful and trust that He will continue to be near to us in what's left of this journey.
Thanks for listening and caring.
Love,
Roni
Friday, March 19, 2004
Friday, March 12, 2004
Report and musings from Roni
Kevin's energy level has been going down since release from the hospital. Realizing that this was the same thing that happened in the hospital when Kevin's blood counts dropped (due to chemo), we went to see our oncologist (Dr. Ratner) today.
A blood test did show anemia, so they gave him a couple of shots of a Procrit type drug and prescribed doubling Kevin's 2-3 bottles of Ensure per day. He's had no appetite, but they said not to worry about what he does, or doesn't, eat so long as he has the protein drinks, juice and Gatorade.
The nurse sent us home with as much ProSure, Vitacal and Resurgex as I could carry, and they've put aside a case of more protein drinks for us to pick up on Thurs., when Kev goes back to have his sutures removed. (I think they are thrilled to unload the stuff, and I'm trilled to take it!)
I just started a raw foods fast until Passover, so it looks like a cooking-free month! Woo hoo! Glad we went to the doctor's before I finished my grocery list. ;-)
Thanks for continued prayer. Please pray that the injections and energy/protein drinks will help Kevin get past this fatigue quickly. He's too tired for much of anything. He did walk two blocks yesterday, but that did him in for the rest of the day — too tired to even read the mail right away, keep up with email or talk about Harley trips we can take when he's better — believe me, for Kevin, that's tired!
Dr. Ratner is guessing mid-April for when Kev will be up to resuming chemo. My prayer is that he'll be recovered enough by Passover to really enjoy the two Seder nights (April 4 & 5) before beginning chemo again.
When I spoke with Deena (Dr. Ratner's office manager) yesterday to make the appointment, she asked, "How in the world did you get through things in DC?" Without even having to think, I responded, " By the grace of G-d and the prayers of many people."
Some people have told us that they've been inspired by strength we've shown though this, but in reality, I feel we've been carried so much more than we have fought.
Here's what I find inspiring: We all can find strength we didn't know we had, and when even that gives out, each one of us can be carried — all we need is to pray, ask others to pray for us, and learn to believe. That's how the Creator designed things to be.
"Surely our griefs He Himself bore,
And our sorrows He carried;
Yet we ourselves esteemed Him stricken,
Smitten of G-d, and afflicted.
But He was pierced through for our transgressions
He was crushed for our iniquities;
The chastening for our well-being fell upon Him,
All of us like sheep have gone astray,
Each of us has turned to his own way;
But the L-rd has caused the iniquity of us all
To fall on Him. — Isaiah 53: 4-6
The more I embrace the truth of just how very much I need Him — and those who carry me to Him with their prayers — the more I'm set us free from the illusion that I'm in control. I believe in being strong, proactive and enabled (I'm a new Yorker, after all). But being "enabled" is a far cry from being Omnipresent, Omniscient and Omnipotent. Dealing with Kevin's cancer is teaching me to discern the difference. I hope I truly get this lesson and never forget it.
A blood test did show anemia, so they gave him a couple of shots of a Procrit type drug and prescribed doubling Kevin's 2-3 bottles of Ensure per day. He's had no appetite, but they said not to worry about what he does, or doesn't, eat so long as he has the protein drinks, juice and Gatorade.
The nurse sent us home with as much ProSure, Vitacal and Resurgex as I could carry, and they've put aside a case of more protein drinks for us to pick up on Thurs., when Kev goes back to have his sutures removed. (I think they are thrilled to unload the stuff, and I'm trilled to take it!)
I just started a raw foods fast until Passover, so it looks like a cooking-free month! Woo hoo! Glad we went to the doctor's before I finished my grocery list. ;-)
Thanks for continued prayer. Please pray that the injections and energy/protein drinks will help Kevin get past this fatigue quickly. He's too tired for much of anything. He did walk two blocks yesterday, but that did him in for the rest of the day — too tired to even read the mail right away, keep up with email or talk about Harley trips we can take when he's better — believe me, for Kevin, that's tired!
Dr. Ratner is guessing mid-April for when Kev will be up to resuming chemo. My prayer is that he'll be recovered enough by Passover to really enjoy the two Seder nights (April 4 & 5) before beginning chemo again.
When I spoke with Deena (Dr. Ratner's office manager) yesterday to make the appointment, she asked, "How in the world did you get through things in DC?" Without even having to think, I responded, " By the grace of G-d and the prayers of many people."
Some people have told us that they've been inspired by strength we've shown though this, but in reality, I feel we've been carried so much more than we have fought.
Here's what I find inspiring: We all can find strength we didn't know we had, and when even that gives out, each one of us can be carried — all we need is to pray, ask others to pray for us, and learn to believe. That's how the Creator designed things to be.
"Surely our griefs He Himself bore,
And our sorrows He carried;
Yet we ourselves esteemed Him stricken,
Smitten of G-d, and afflicted.
But He was pierced through for our transgressions
He was crushed for our iniquities;
The chastening for our well-being fell upon Him,
All of us like sheep have gone astray,
Each of us has turned to his own way;
But the L-rd has caused the iniquity of us all
To fall on Him. — Isaiah 53: 4-6
The more I embrace the truth of just how very much I need Him — and those who carry me to Him with their prayers — the more I'm set us free from the illusion that I'm in control. I believe in being strong, proactive and enabled (I'm a new Yorker, after all). But being "enabled" is a far cry from being Omnipresent, Omniscient and Omnipotent. Dealing with Kevin's cancer is teaching me to discern the difference. I hope I truly get this lesson and never forget it.
Wednesday, March 03, 2004
DC Update 6 - "Oh L-rd my G-d, I cried to You for help, and You healed me." Ps. 30:2
There is so much testimony to G-d's sovereignty that occurred since mid-October when we heard those words "the pathology tests are positive for malignancy." We can't wait to share all the miracles and encouragements along a challenging, scary journey. But right now, we're trying desperately to catch up on sleep, so those stories will come later.
Kevin continues to heal well. All tubes are now out except one IV line for fluids and electrolytes, and I am happily listening to him snore as I write this. We expect to be home before the weekend is over.
We saw another doc last night -- hematologist/oncologist. In going over with us what Kevin came back from --especially the dangerously low white count, but also the surgery itself -- he said "I hope you believe in G-d." No one has come out and said "miracle;" but we've repeatedly heard words & phrases like "remarkable," "much better than expected," etc. We tell everyone that G-d has answered prayer.
To put the good news in perspective, back in December when I first spoke with Dr. Sugarbaker's office, they did not consider Kevin a good candidate for cure, as in addition to the mucinous growths on the peritoneum, he had signet ring carcinoma, which is very aggressive and more often than not, terminal. Dr. Sugarbaker decided to take Kevin's case more because of his young age --wanting to at least buy him time -- rather than because of high hopes for cure.
To go from that to this surgery's pathology report, which showed no sign of cancer, and being advised to finish the systemic chemo treatments "just to be on the safe side" is amazing.
I believe it was divine intervention that led us to question what we were being told by the oncologist at St. Luke's-Roosevelt hospital where Kevin had his emergency surgery in October. That oncologist had excellent credentials, but most likely never encountered this rare disease before. (We have since learned it is not covered in Med school, and most doctors either never see it in their careers, or don't recognize what it is if they do encounter it). He would would have treated Kevin with a normal colon cancer chemo. protocol. Kevin's stage 4 aggressive cancer had less than a 20% chance of responding to that. The mucinous growths (slower growing and not "cancerous" like the signet cell tumors were) are at best rendered dormant by chemo. only to flare up again to slowly smother abdominal organs one by one.
Until quite unusual circumstances (which we believe to be G-d's sovereign leading) led us to Dr. Ratner (our oncologist) and Dr. Sugarbaker (one of the few doctors worldwide who has the expertise to perform the electro and laser surgery necessary to remove the tumors), our plan was to go to Sloan Kettering (within walking distance of our new apartment!) for a second opinion. We have since from at least four others with same diagnosis as Kevin's (some less advanced) who went to Sloan Kettering. The news they received from the SK doctors was that they had months to live, and SK offered them no treatment for this rare disease.
It is clear to us that G-d is not yet done with Kevin's journey in this life. He certainly knows that I am not ready to face life without my friend, partner, comic, anchor, fellow-adventurer and love of my life.
Kevin and I have both grown through this experience, separately as well as together. I pray we never lose the gratitude and humility we feel as the recipients of so much love, prayer and support. There are no words to express the gift of so many prayers... We will never be able to give to others on the scale of what we have received, but we certainly desire to have the opportunity to do our part to impart faith, courage and the knowledge of a loving, compassionate, powerful and comforting G-d to others who find themselves in desperate circumstances.
Our faith goes far beyond this marvelous answer to prayer. It is what sustained us when we didn't know for certain how G-d would answer our cries for healing, only that He would impart grace, courage and peace to face whatever was in store. Of course there were tears, anger and fear, but underneath the emotional ups and downs, we knew on a bedrock level that He was sovereign and that whatever the outcome, it would not be the result G-d's indifference nor random fate nor evil "winning" out. We feared hard times. We feared pain beyond what we could imagine being able to endure. But to paraphrase Psalm 23, even though we walked through the valley of the shadow of death, we did not fear evil, for G-d was with us. He truly is a very present help in time of trouble.
With deep love and appreciation for all the friends and strangers who have loved in both word and deed when we needed you most,
Roni
Kevin continues to heal well. All tubes are now out except one IV line for fluids and electrolytes, and I am happily listening to him snore as I write this. We expect to be home before the weekend is over.
We saw another doc last night -- hematologist/oncologist. In going over with us what Kevin came back from --especially the dangerously low white count, but also the surgery itself -- he said "I hope you believe in G-d." No one has come out and said "miracle;" but we've repeatedly heard words & phrases like "remarkable," "much better than expected," etc. We tell everyone that G-d has answered prayer.
To put the good news in perspective, back in December when I first spoke with Dr. Sugarbaker's office, they did not consider Kevin a good candidate for cure, as in addition to the mucinous growths on the peritoneum, he had signet ring carcinoma, which is very aggressive and more often than not, terminal. Dr. Sugarbaker decided to take Kevin's case more because of his young age --wanting to at least buy him time -- rather than because of high hopes for cure.
To go from that to this surgery's pathology report, which showed no sign of cancer, and being advised to finish the systemic chemo treatments "just to be on the safe side" is amazing.
I believe it was divine intervention that led us to question what we were being told by the oncologist at St. Luke's-Roosevelt hospital where Kevin had his emergency surgery in October. That oncologist had excellent credentials, but most likely never encountered this rare disease before. (We have since learned it is not covered in Med school, and most doctors either never see it in their careers, or don't recognize what it is if they do encounter it). He would would have treated Kevin with a normal colon cancer chemo. protocol. Kevin's stage 4 aggressive cancer had less than a 20% chance of responding to that. The mucinous growths (slower growing and not "cancerous" like the signet cell tumors were) are at best rendered dormant by chemo. only to flare up again to slowly smother abdominal organs one by one.
Until quite unusual circumstances (which we believe to be G-d's sovereign leading) led us to Dr. Ratner (our oncologist) and Dr. Sugarbaker (one of the few doctors worldwide who has the expertise to perform the electro and laser surgery necessary to remove the tumors), our plan was to go to Sloan Kettering (within walking distance of our new apartment!) for a second opinion. We have since from at least four others with same diagnosis as Kevin's (some less advanced) who went to Sloan Kettering. The news they received from the SK doctors was that they had months to live, and SK offered them no treatment for this rare disease.
It is clear to us that G-d is not yet done with Kevin's journey in this life. He certainly knows that I am not ready to face life without my friend, partner, comic, anchor, fellow-adventurer and love of my life.
Kevin and I have both grown through this experience, separately as well as together. I pray we never lose the gratitude and humility we feel as the recipients of so much love, prayer and support. There are no words to express the gift of so many prayers... We will never be able to give to others on the scale of what we have received, but we certainly desire to have the opportunity to do our part to impart faith, courage and the knowledge of a loving, compassionate, powerful and comforting G-d to others who find themselves in desperate circumstances.
Our faith goes far beyond this marvelous answer to prayer. It is what sustained us when we didn't know for certain how G-d would answer our cries for healing, only that He would impart grace, courage and peace to face whatever was in store. Of course there were tears, anger and fear, but underneath the emotional ups and downs, we knew on a bedrock level that He was sovereign and that whatever the outcome, it would not be the result G-d's indifference nor random fate nor evil "winning" out. We feared hard times. We feared pain beyond what we could imagine being able to endure. But to paraphrase Psalm 23, even though we walked through the valley of the shadow of death, we did not fear evil, for G-d was with us. He truly is a very present help in time of trouble.
With deep love and appreciation for all the friends and strangers who have loved in both word and deed when we needed you most,
Roni
DC Update 5 - Pathology report contains best posible news!
Scare over, healing progressing and prognosis better than docs expected. Here is an email my (Roni's) dad sent to family and friends.
10:00 p.m., 3/1/04
Just got a phone call from Roni with fabulous news.
Kevin's white count is up to 9.0 and climbing. It was below 1 four days ago requiring everyone going into his room to scrub, mask, and glove. Lot's of stories to tell but on to the best news.
The pathology report was excellent. The lymph nodes taken during surgery had no cancer.
The tumors taken were all dead cancer cells. There was no carcinoma in any tissue taken. The diagnosis has been changed to "peritoneal adenomucinosis" [proliferation of the mucin].
Dr. Sugarbaker says that according to his statistics Kevin has a 60 to 80% chance of non-recurrence within the next 10 years. Blood tests will be taken every 3 months for cancer markers. CT scans will be at 6-month intervals at first. He will have some more chemo for any possible metastasis.
Ostomy reversal will be in 6 months. At that time they'll take a good look around to make sure everything is still OK. That is, of course, the best way to know exactly what's going on.
Kevin walked down the hall to visit Alice today [she had surgery the day after Kevin]. He's sitting up and eating. They celebrated the good news with Klondike bars! It may be that Kevin will be able to go home this weekend.
Thanks again to you for your prayers and to G_d who has showed great mercies on us all.
Love, Vern
10:00 p.m., 3/1/04
Just got a phone call from Roni with fabulous news.
Kevin's white count is up to 9.0 and climbing. It was below 1 four days ago requiring everyone going into his room to scrub, mask, and glove. Lot's of stories to tell but on to the best news.
The pathology report was excellent. The lymph nodes taken during surgery had no cancer.
The tumors taken were all dead cancer cells. There was no carcinoma in any tissue taken. The diagnosis has been changed to "peritoneal adenomucinosis" [proliferation of the mucin].
Dr. Sugarbaker says that according to his statistics Kevin has a 60 to 80% chance of non-recurrence within the next 10 years. Blood tests will be taken every 3 months for cancer markers. CT scans will be at 6-month intervals at first. He will have some more chemo for any possible metastasis.
Ostomy reversal will be in 6 months. At that time they'll take a good look around to make sure everything is still OK. That is, of course, the best way to know exactly what's going on.
Kevin walked down the hall to visit Alice today [she had surgery the day after Kevin]. He's sitting up and eating. They celebrated the good news with Klondike bars! It may be that Kevin will be able to go home this weekend.
Thanks again to you for your prayers and to G_d who has showed great mercies on us all.
Love, Vern
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