Although Roni was good at keeping the blog updated while we were at the hospital, there were some things she didn't write about. I'll try to write about some of our experiences while we were there.
As you already know, the surgery at Washington DC lasted 10 hours. What you haven't been told is what it was like coming out of the surgery.
Honestly, I was pretty doped up so I don't remember that much, but here is what I do remember.
After the surgery, I was moved to recovery then to ICU.
Because the surgery was so long and complicated, they left the breathing tube down my throat to help me breathe. They also had an NG tube going in my nose and down my throat into my stomach. This was used to empty the liquids that collect in the stomach and is one of the most uncomfortable things in the world. Apart from the two tubes going down my throat, I also had 4 drains in my abdomen and three in my chest. These were used to drain fluids from their respective areas. I also had a chest port used for pumping liquid nutrition and other IV fluids into me. With all of these tubes, they tied my hands to the bed to make sure I would not pull anything out after coming out of surgery.
I don't know if you have ever had the feeling of complete helplessness, but if you can imagine being tied up, not being able to talk, being half conscious and not really knowing where you are or who is around you, you might get an idea of what my first day was like.
Since I couldn't talk, I was given a pen and a piece of paper to write with. As my penmanship is bad normally, I can only guess at how bad it was when I was doped up on pentonol. The nurses must have learned to decipher bad handwriting because the did a good job of figuring out what I wanted.
As I said before, I don't remember much of that time, but I do remember Roni being there and saying that the doctor believed he got everything and that although I still have the ileostomy, it would be able to be reversed at a later time. I was really hoping the doctor would've been able to reverse it then, but just knowing that it was not permanent was good enough.
I was in ICU for only a day (the doctor said that I would probably be there two) before being moved to my own private room. Well, private in the sense that there were no other patients in there. Roni stayed with me most of the time, being relieved by friends and family so she could get some much needed rest. I was never left alone until the last few days I was there. Even though I was out of ICU in only a day, I wouldn't be out of the woods for a couple of weeks.
Sunday, May 09, 2004
Surgery Date Confirmed - July 6th, 2004
I wrote in my last entry that we had a tentative surgery date. Well, it's been confirmed.
When I went for my latest chemo infusion, I asked my oncologist about having only one more chemo treatment instead of two. That way, I would be able to have my surgery at the beginning of July instead of the beginning of August. He agreed and so now my next and hopefully last surgery will be done on July 6th.
This surgery should be much easier than the previous ones. The first one was dangerous because it was done with a lot of infection in my abdomen. As a matter of fact, that is what they were concerned about during my operation in Oct of 2003, that the infection would kill me. They weren't that concerned about the cancer at that time. I remember my wife being concerned about visiting because she was afraid she was coming down with a cold and they told her that they were pumping so many antibiotics in me, it wouldn't be a problem. Fortunately G-d did a miracle and I healed quickly. Some thought that I would be in there for at least a couple of weeks, maybe even three. I was out of there in 11 days.
The second surgery was difficult because it lasted 10 hours and consisted of a lot of moving my organs around, a lot of scarping, removing some parts, and a lot of very toxic chemo. Actually, it was due to the chemo that my white blood cell count dropped dramatically. It took about 4 days before it was back up to normal. Who knows, if it wasn't for that I might even have gotten out earlier than I did. For those who don't know, most patients are expected to be in the hospital for 3-6 weeks. Dr. Sugarbaker said he expected I would be there about 3 weeks (21 days). I beat that expectation too and was out of there in only 17 days.
This next surgery will be done with me being relatively healthy, and shouldn't involve any chemo. The surgery should also be shorter and it will only consist of the doctor having a look around and making sure the cancer has not come back, then reversing the ileostomy. As long as everything looks OK, and the reversal goes well, the hospital stay should only be about a week, with probably 2 or so weeks to recover at home. So, hopefully by the middle of August I will be well on my way to getting better than I was even before the first surgery in Oct.
Since the surgery is scheduled for July 6th, we will have to be there on July 3rd for pre-admission testing (blood test, urine test and a CT scan). They said we have to come in on Sat because they will be closed for testing on the Monday, July 5th. That means we will be there for the 4th of July. Should be neat to be in the capital for Independence Day.
For those praying, please keep this surgery in your prayers. Pray that nothing will be found and the reversal goes better than expected. We have already seen so many miracles, but we would love to see a few more.
Kevin
When I went for my latest chemo infusion, I asked my oncologist about having only one more chemo treatment instead of two. That way, I would be able to have my surgery at the beginning of July instead of the beginning of August. He agreed and so now my next and hopefully last surgery will be done on July 6th.
This surgery should be much easier than the previous ones. The first one was dangerous because it was done with a lot of infection in my abdomen. As a matter of fact, that is what they were concerned about during my operation in Oct of 2003, that the infection would kill me. They weren't that concerned about the cancer at that time. I remember my wife being concerned about visiting because she was afraid she was coming down with a cold and they told her that they were pumping so many antibiotics in me, it wouldn't be a problem. Fortunately G-d did a miracle and I healed quickly. Some thought that I would be in there for at least a couple of weeks, maybe even three. I was out of there in 11 days.
The second surgery was difficult because it lasted 10 hours and consisted of a lot of moving my organs around, a lot of scarping, removing some parts, and a lot of very toxic chemo. Actually, it was due to the chemo that my white blood cell count dropped dramatically. It took about 4 days before it was back up to normal. Who knows, if it wasn't for that I might even have gotten out earlier than I did. For those who don't know, most patients are expected to be in the hospital for 3-6 weeks. Dr. Sugarbaker said he expected I would be there about 3 weeks (21 days). I beat that expectation too and was out of there in only 17 days.
This next surgery will be done with me being relatively healthy, and shouldn't involve any chemo. The surgery should also be shorter and it will only consist of the doctor having a look around and making sure the cancer has not come back, then reversing the ileostomy. As long as everything looks OK, and the reversal goes well, the hospital stay should only be about a week, with probably 2 or so weeks to recover at home. So, hopefully by the middle of August I will be well on my way to getting better than I was even before the first surgery in Oct.
Since the surgery is scheduled for July 6th, we will have to be there on July 3rd for pre-admission testing (blood test, urine test and a CT scan). They said we have to come in on Sat because they will be closed for testing on the Monday, July 5th. That means we will be there for the 4th of July. Should be neat to be in the capital for Independence Day.
For those praying, please keep this surgery in your prayers. Pray that nothing will be found and the reversal goes better than expected. We have already seen so many miracles, but we would love to see a few more.
Kevin
Saturday, April 24, 2004
Starting Chemo and Possible Surgery Date
Starting chemo on April 26th.
This Thursday I had an appointment to see my oncologist. Last time I was there, I weighed about 150 pounds. I had lost about 15 pounds since my surgery and was having a hard time gaining it back. During the last visit, the doctor said he wanted me to gain about 10 lbs before starting chemo up again, and to come back three weeks later. Well, Thursday was three weeks later.
I had my blood tested, which I do every time. They jab my finger with a needle, take a small sample and test mainly for red blood cell, white blood cell and platelets count. This time they were all fine. My platelets were extremely high when I first came back from the hospital (over 900, and the sage range is 150-450). This time everything was normal. Even the platelet count was well within range (205).
After the blood test, I was led to the examining room and waited for the doctor. He came in and said that I was looking pretty good, and with the weight I gained (I am back up to about 160), I could go ahead and start my chemo treatments again. Now, I know what you are thinking, "Boy, I bet you weren't glad to hear that". Well, I was. I don't like the chemo, but the sooner I get it started, the sooner I get it over with. And instead of the 4 treatments that were left after my initial two done in Dec and Jan, the doctor said I should probably only do 3. Sounds good to me. that means my last day would be Jun 20. I then went ahead and scheduled a time with the nurser. I start again on Monday, April 26th. That day I will start taking the oral Xeloda, which I will take twice a day for two weeks, then have a week off. That day I will also have an IV infusion of Oxaliplatin. That is the chemo that really wipes me out for about a week. I only get that once every three weeks.
Since I knew when my chemo was starting, I knew when I would be finished with it. So I called Dr. Sugarbaker's office to see if I could schedule my next and final surgery. This one would be a combine exploratory and ileostomy reversal. At first the doctor said he could do it on Aug 3rd. Why so late, you ask. First of all, he requires that surgery take place at least 4 weeks after finishing chemo. Second, he is a very busy man and does a lot of surgeries. That was the only time after July 20th he had available.
I asked if they were sure they couldn't do it sooner. Then they suggested instead of 3 rounds of chemo, I only do two (which means I would finish on May 30th and the surgery would take place on July 6th. That sounded great to me, so I told them yes, as long as my oncologist agrees. I will ask him on Monday when I go in to start chemo.
I am excited about this next surgery, because they will finally reverse this ileostomy, and I can begin to get back to normal. This surgery should also be easier (as long as they don't need to use chemo) and the recovery period shorter that the last two. It still won't be easy, as it will be the third major abdominal surgery in 9 months, but it'll be easier than the last one.
So, if you are reading this and you are a praying person, please pray that my oncologist agrees to the two rounds of chemo and that I can get the surgery in July.
Thank you.
This Thursday I had an appointment to see my oncologist. Last time I was there, I weighed about 150 pounds. I had lost about 15 pounds since my surgery and was having a hard time gaining it back. During the last visit, the doctor said he wanted me to gain about 10 lbs before starting chemo up again, and to come back three weeks later. Well, Thursday was three weeks later.
I had my blood tested, which I do every time. They jab my finger with a needle, take a small sample and test mainly for red blood cell, white blood cell and platelets count. This time they were all fine. My platelets were extremely high when I first came back from the hospital (over 900, and the sage range is 150-450). This time everything was normal. Even the platelet count was well within range (205).
After the blood test, I was led to the examining room and waited for the doctor. He came in and said that I was looking pretty good, and with the weight I gained (I am back up to about 160), I could go ahead and start my chemo treatments again. Now, I know what you are thinking, "Boy, I bet you weren't glad to hear that". Well, I was. I don't like the chemo, but the sooner I get it started, the sooner I get it over with. And instead of the 4 treatments that were left after my initial two done in Dec and Jan, the doctor said I should probably only do 3. Sounds good to me. that means my last day would be Jun 20. I then went ahead and scheduled a time with the nurser. I start again on Monday, April 26th. That day I will start taking the oral Xeloda, which I will take twice a day for two weeks, then have a week off. That day I will also have an IV infusion of Oxaliplatin. That is the chemo that really wipes me out for about a week. I only get that once every three weeks.
Since I knew when my chemo was starting, I knew when I would be finished with it. So I called Dr. Sugarbaker's office to see if I could schedule my next and final surgery. This one would be a combine exploratory and ileostomy reversal. At first the doctor said he could do it on Aug 3rd. Why so late, you ask. First of all, he requires that surgery take place at least 4 weeks after finishing chemo. Second, he is a very busy man and does a lot of surgeries. That was the only time after July 20th he had available.
I asked if they were sure they couldn't do it sooner. Then they suggested instead of 3 rounds of chemo, I only do two (which means I would finish on May 30th and the surgery would take place on July 6th. That sounded great to me, so I told them yes, as long as my oncologist agrees. I will ask him on Monday when I go in to start chemo.
I am excited about this next surgery, because they will finally reverse this ileostomy, and I can begin to get back to normal. This surgery should also be easier (as long as they don't need to use chemo) and the recovery period shorter that the last two. It still won't be easy, as it will be the third major abdominal surgery in 9 months, but it'll be easier than the last one.
So, if you are reading this and you are a praying person, please pray that my oncologist agrees to the two rounds of chemo and that I can get the surgery in July.
Thank you.
A Week of Firsts
This week has been a week of firsts for me and Roni.
Last Wed I was watching the weather and saw that Sunday was supposed to be in the mid 70s and sunny. I had been feeling pretty good and was beginning to think about getting my motorcycle and go riding on Sunday. It had been about 6 months since I had ridden, and I was a little nervous about getting on the bike again. Physically I thought I was up for it. Still a little weak, but strong enough.
So on Thur, I called the guy who I left my bike with. He was not home, but his mother-in-law (probably watching the kids) said he was in CT for some HOG training. "Great." I thought, "I won't be able to get my bike now." I was told to call later to speak to his wife. I called about 9:30PM and his wife said that I could stop by Friday after work and get it. That would work out, as I had to get to the dealer before they closed and get it inspected. As it had been off the road for over 6 months, it did not have the registration sticker (I did bring that with me to put on) or current inspection sticker. I wanted to make sure I got to the dealer because I did not want to risk getting a ticket. Anyway, we get to the house, later than I expected, and after a few mins, the bike fired up. I let it warm up as Roni and I put our gear on, then getting directions to the dealer, we sped off.
As we were riding to the dealer, I kept looking at my watch, realizing that we weren't going to make it. About 6 PM (when the dealership closes) we were still about 40 blocks away and I told Roni we were too late. She says a quick prayer, "G-d, please let someone still be there, and let them have compassion on us." Well, we got there about 6:10 and pulled up outside the service entrance. I saw that there were still people there and figured they were getting ready for an open house the next day. I then asked the service manager if it would be possible to get my bike inspected real quick. I knew it would be quick because last year, it took all of 5 mins. This year they broke that record and did it in about 3 mins. OK, they really didn't "inspect" the bike. They basically pulled the old sticker off and put the new one on. Good enough for me, as least I was legal.
It was now about 6:20 PM and we headed home. Roni suggested we stop by the Cohen's (our Rabbi and his family) to show them that we had the bike. You should also know that when we first got the bike in Apr of 2002, the first place we rode to was the Cohen's. That time they were happy for us. This time they were ecstatic to see us on the bike again. That was a sign to them that my recovery was really moving along. They then invited us to stay for Shabbat dinner which we readily accepted. We had a great time and rode home afterwards happy and content.
So, I told you that, to tell you this. Because Sun was going to be beautiful, I wanted to go on a decent ride and I wanted Roni to come along. On Sunday, I got my haircut (first haircut since my surgery - whoo hoo) and cleaned some of the dust and grime off the bike. Then Roni and I went on our first ride since sometime last summer. It was my first real ride since all my medical problems began on Oct 8, 2003.
Also, since I had been feeling so good, I also decided to try going back to the gym. On Wed about 5:30 PM, I went to the gym for the first time since my surgery. I spent about 40 mins there and came back tired, but feeling like I accomplished something.
So this really was a week of firsts. Not a lot, but a couple of major ones. And for me, that's pretty darn good.
Last Wed I was watching the weather and saw that Sunday was supposed to be in the mid 70s and sunny. I had been feeling pretty good and was beginning to think about getting my motorcycle and go riding on Sunday. It had been about 6 months since I had ridden, and I was a little nervous about getting on the bike again. Physically I thought I was up for it. Still a little weak, but strong enough.
So on Thur, I called the guy who I left my bike with. He was not home, but his mother-in-law (probably watching the kids) said he was in CT for some HOG training. "Great." I thought, "I won't be able to get my bike now." I was told to call later to speak to his wife. I called about 9:30PM and his wife said that I could stop by Friday after work and get it. That would work out, as I had to get to the dealer before they closed and get it inspected. As it had been off the road for over 6 months, it did not have the registration sticker (I did bring that with me to put on) or current inspection sticker. I wanted to make sure I got to the dealer because I did not want to risk getting a ticket. Anyway, we get to the house, later than I expected, and after a few mins, the bike fired up. I let it warm up as Roni and I put our gear on, then getting directions to the dealer, we sped off.
As we were riding to the dealer, I kept looking at my watch, realizing that we weren't going to make it. About 6 PM (when the dealership closes) we were still about 40 blocks away and I told Roni we were too late. She says a quick prayer, "G-d, please let someone still be there, and let them have compassion on us." Well, we got there about 6:10 and pulled up outside the service entrance. I saw that there were still people there and figured they were getting ready for an open house the next day. I then asked the service manager if it would be possible to get my bike inspected real quick. I knew it would be quick because last year, it took all of 5 mins. This year they broke that record and did it in about 3 mins. OK, they really didn't "inspect" the bike. They basically pulled the old sticker off and put the new one on. Good enough for me, as least I was legal.
It was now about 6:20 PM and we headed home. Roni suggested we stop by the Cohen's (our Rabbi and his family) to show them that we had the bike. You should also know that when we first got the bike in Apr of 2002, the first place we rode to was the Cohen's. That time they were happy for us. This time they were ecstatic to see us on the bike again. That was a sign to them that my recovery was really moving along. They then invited us to stay for Shabbat dinner which we readily accepted. We had a great time and rode home afterwards happy and content.
So, I told you that, to tell you this. Because Sun was going to be beautiful, I wanted to go on a decent ride and I wanted Roni to come along. On Sunday, I got my haircut (first haircut since my surgery - whoo hoo) and cleaned some of the dust and grime off the bike. Then Roni and I went on our first ride since sometime last summer. It was my first real ride since all my medical problems began on Oct 8, 2003.
Also, since I had been feeling so good, I also decided to try going back to the gym. On Wed about 5:30 PM, I went to the gym for the first time since my surgery. I spent about 40 mins there and came back tired, but feeling like I accomplished something.
So this really was a week of firsts. Not a lot, but a couple of major ones. And for me, that's pretty darn good.
Friday, March 19, 2004
Sorry, No Update For Awhile
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
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 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
Saturday, February 28, 2004
DC Update 4 - NG tube out -- yeah! Low blood count -- pray!
Please continue to pray for Kevin.
All of his vitals, except blood counts, are good, and he seems to be healing well from the surgery. However, he is having two severe side affects from the chemo -- low blood counts, both red and white cells.
The anemia along with continued sleeplessness (for a variety of reasons) has him very fatigued.
His white count is dangerously low at .9 (Should be 4.0-6.0) This places him at great risk for infection. He is now in isolation, meaning he can't leave his room (just when he finally started walking!), and others cannot enter without wearing a mask. I don't have to wear a mask, because he is already exposed to my germs, but I do have to scrub my hands and wear gloves before touching him.
He is getting Procrit for the anemia and received 2 units of packed, red blood cells last night/this morning. Two days ago they began injections of a drug that will hopefully stimulate his bone marrow to begin producing white cells again. As a precaution, they are giving him antibiotics, and they removed his chest port, as that site as a tendancy to become infected.
Good news is that his digestive system is coming along. He got the NG tube out yesterday (9 days post-op) and is now enjoying a liquid diet. Mmmmmm. Pudding.
With this complication, Kevin continues to need 24/7 care. My parents are driving back up from N. Carolina to help me, so I can go back to the hotel and get some sleep. please pray for good health for all of us -- especially me as I have had very little sleep -- as any illness would bar us from Kevin's room. And for Kevin, please join me in praying for a miraculous restoration of bone marrow production and a white count increase ahead of the week or so that it normally takes the drug to take affect.
Thanks for continued support.
Love,
Roni
All of his vitals, except blood counts, are good, and he seems to be healing well from the surgery. However, he is having two severe side affects from the chemo -- low blood counts, both red and white cells.
The anemia along with continued sleeplessness (for a variety of reasons) has him very fatigued.
His white count is dangerously low at .9 (Should be 4.0-6.0) This places him at great risk for infection. He is now in isolation, meaning he can't leave his room (just when he finally started walking!), and others cannot enter without wearing a mask. I don't have to wear a mask, because he is already exposed to my germs, but I do have to scrub my hands and wear gloves before touching him.
He is getting Procrit for the anemia and received 2 units of packed, red blood cells last night/this morning. Two days ago they began injections of a drug that will hopefully stimulate his bone marrow to begin producing white cells again. As a precaution, they are giving him antibiotics, and they removed his chest port, as that site as a tendancy to become infected.
Good news is that his digestive system is coming along. He got the NG tube out yesterday (9 days post-op) and is now enjoying a liquid diet. Mmmmmm. Pudding.
With this complication, Kevin continues to need 24/7 care. My parents are driving back up from N. Carolina to help me, so I can go back to the hotel and get some sleep. please pray for good health for all of us -- especially me as I have had very little sleep -- as any illness would bar us from Kevin's room. And for Kevin, please join me in praying for a miraculous restoration of bone marrow production and a white count increase ahead of the week or so that it normally takes the drug to take affect.
Thanks for continued support.
Love,
Roni
Tuesday, February 24, 2004
DC Update 3 - Sleep last night!
Today is, Tuesday, 6-days post-op.
Last night my dad stayed in Kevin's room, and with a higher dose of Benedryl, no surgical stockings, a day of forced activity (breathing into a spirmometer (?)), Kevin slept much better. I went to the hotel and slept in a bed!, so I ffel better, too.
Thanks, Dad!
It's nearly 10:30 a.m. Kevin is visiting with his parents, wishing he could just sleep and deciding whether to get up now or this evening. The doctors said they may take his chest tube out today. He may also get his NG tube out in the next 3 to 4 days. That is what is currently making him the most miserable. His meds give him a really dry throat, and the tube makes it hurt worse, but as long as the NG tube is in, he can't even swallow water, just suck on ice chips.
I really think the worst is behind us, and that he will start gaining strength each day.
I will try to find time in the next day or two to write some of the neat things that have happened.
As always, much, much gratitude for all the prayers and well-wishes.
Roni
Last night my dad stayed in Kevin's room, and with a higher dose of Benedryl, no surgical stockings, a day of forced activity (breathing into a spirmometer (?)), Kevin slept much better. I went to the hotel and slept in a bed!, so I ffel better, too.
Thanks, Dad!
It's nearly 10:30 a.m. Kevin is visiting with his parents, wishing he could just sleep and deciding whether to get up now or this evening. The doctors said they may take his chest tube out today. He may also get his NG tube out in the next 3 to 4 days. That is what is currently making him the most miserable. His meds give him a really dry throat, and the tube makes it hurt worse, but as long as the NG tube is in, he can't even swallow water, just suck on ice chips.
I really think the worst is behind us, and that he will start gaining strength each day.
I will try to find time in the next day or two to write some of the neat things that have happened.
As always, much, much gratitude for all the prayers and well-wishes.
Roni
Subscribe to:
Posts (Atom)