Dear all
Today is D+13, 13 days from the stem cell transplant. I got very much used to living in the small room. As expected, after the strong chemo, I lost my appetite and all the important parameters went to the floor (like the imuune system). For a week, the numbers were so low that you wonder how lucky you are to get out of this situation. That week with very low numbers was the the most risky period in this adventure.
As in the textbook, 3 days ago the numbers started to go up and in a fast pace. So far the medical team is very happy with the progress and status. On the flip side, I can't eat and drink on my own and this will have to be resolved before going home.
I am already 2 weeks in the room and got used to the routine. My family comes to be with me every day and it is really very encouraging. I really hope that within a week I will be able to go home.
This is for now, just a short update. I hope for even better news in the next update.
Yours
Guy
Thursday, June 25, 2009
Sunday, June 21, 2009
The point of no return
In every trip, by air, sea or others, there is a point where you can't go back (usually it's fuel).
As I started my last phase of the treatment in an isolation room, I felt like a pilot who crossed the point of no return. However this is for a good reason with a plan to safely land in remission.
After settling down in the isolated room, it looked to me that the next 2 weeks will be easy.
I was totally wring. Right after they started with the 2-day aggressive chemo, everything changed: nausea, weakness, loss of appetite, sour throat, stomach pains and occasional throw-ups.
The past 3 days were the roughest.
The purpose of the treatment is to bring all the systems to a very low point and allow the new stem cells to do their work. A little more than a week ago, I saw my stem cells going back into my system. It was sort of an anti-climax. Going through 20 months of treatments is all for the very important 20 minutes of getting back the good stem cells.
The last 3 days were the bottom of everything.
I felt like barely alive. I haven't had almost any food in 5 days.
Today the numbers start climbing. I still feel crap but better.
It is now D+9 and I hope to go home in D+15 (less than a week from today).
Shoshi, the girls and Pierre come to see me every day and it is important. When I can, I talk to a lot of people over the phone and Skype with a camera.
I hope that from this turning point I can better stay in touch.
Today is a special day: it is Father's Day and also Shoshi's and my 31st wedding anniversary!
I can't even start t0o describe my feeling to Shoshi, it is too personal. If there is one thing that kept us together in good and bad times, is the fact that we are still the best friends.
Now I have go rest. Even writing this short update was a challenged.
All the best to you, happy Father's Day and stay tuned for even better news.
Yours with optimism,
Guy
As I started my last phase of the treatment in an isolation room, I felt like a pilot who crossed the point of no return. However this is for a good reason with a plan to safely land in remission.
After settling down in the isolated room, it looked to me that the next 2 weeks will be easy.
I was totally wring. Right after they started with the 2-day aggressive chemo, everything changed: nausea, weakness, loss of appetite, sour throat, stomach pains and occasional throw-ups.
The past 3 days were the roughest.
The purpose of the treatment is to bring all the systems to a very low point and allow the new stem cells to do their work. A little more than a week ago, I saw my stem cells going back into my system. It was sort of an anti-climax. Going through 20 months of treatments is all for the very important 20 minutes of getting back the good stem cells.
The last 3 days were the bottom of everything.
I felt like barely alive. I haven't had almost any food in 5 days.
Today the numbers start climbing. I still feel crap but better.
It is now D+9 and I hope to go home in D+15 (less than a week from today).
Shoshi, the girls and Pierre come to see me every day and it is important. When I can, I talk to a lot of people over the phone and Skype with a camera.
I hope that from this turning point I can better stay in touch.
Today is a special day: it is Father's Day and also Shoshi's and my 31st wedding anniversary!
I can't even start t0o describe my feeling to Shoshi, it is too personal. If there is one thing that kept us together in good and bad times, is the fact that we are still the best friends.
Now I have go rest. Even writing this short update was a challenged.
All the best to you, happy Father's Day and stay tuned for even better news.
Yours with optimism,
Guy
Thursday, June 11, 2009
Reporting from the cocoon!
This is the moment I have been waiting for 20 months - the beginning of the end.
I am now locked in a clean hospital room for three weeks, where my recovery begins with the stem cell transplant.
After such a long treatment you don’t know what to expect. I read the materials, interviewed someone who has done it, talked to the nurses, but the real thing is when you go in. At least mentally, I was calm and ready.
Thanks to the love and support of my family, I checked in last night in a relatively very good shape. This is a good start.
From now it is three weeks and then recovery at home.
As expected, the closer I got to this milestone, everything was more difficult.
Last week I went to the process of stem cell harvesting. First, for five days I gave myself injections to induce their growth. Then for three days, 6-7 hours at a time, I was hooked to a big machine (picture below) where the stem cells were collected. This was a much tougher process than I anticipated.
Anyhow, this is all behind me and I am in the cocoon!
The medical team here calls the stem cell transplant as D-Day! I didn’t know it before, when I wrote the last update. Everything is related to the day I am getting back my clean stem cells via a blood infusion. This will happen on my third day. So today is D-2 and the release date should be D+18, etc.
The good surprise is that the hospital is very accommodating family visits. Everyone has to wear masks and gloves and the key is to protect me from ANY infection while my immune system goes down, before it goes up again.
Knowing that I will be locked in for three weeks, my schedule in the past 10 days has been hectic. I also knew that once I start the process, there will be certain restrictions that will last months. For example, no restaurants for six months, no fresh vegetables and fruits for many months, no Sushi forever, no large crowds, etc.
Therefore, I was on a roll!
Shoshi and I went to eat outside several times, went to see friends, see a magnificent dance show, and more.
Last Sunday we had a graduation party with over 80 friends. There were many reasons to celebrate: Neta’s university graduation, Lior’s high school graduation, Inbal & Pierre graduation from being single and my graduation from 20 months of treatments. Our good friend Hana volunteered to host in her beautiful house and Shoshi with a few girls worked hard on the preparations – food, flowers, and much more. The weather was on our side.
It was a memorable afternoon with good company, sunny beautiful garden, good atmosphere, happy friends and lots of good food.
It was also my opportunity to say a temporary goodbye to our many friends.
On the following Monday afternoon we attended Lior’s high school graduation.
When I saw her marching in her white graduation gown and hat, I realized how fast time flies. It was only yesterday that we came to Needham and she was a toddler.
I am sure that on this occasion she is as happy as I am.
And so as Neta is out of a university, Lior goes into one in Sep. It helps, but it wasn’t planned.
Inbal and Pierre are so lovely. It is a bonus to be around loving people. Their plan is to return to Africa in Sep. and I will miss them a lot.
Last Tuesday (yesterday) was a long day. I suddenly realized that I haven’t even started packing. Eventually I did and in the evening the Alon family and Pierre went to the hospital in Boston.
I don’t think the nurses have seen such a large entourage on a restricted floor. It was great to have all the family with me, helping to settle down physically and mentally: disinfecting my belongings, hanging posters, talking and having a good time – all six of us in a small room!
As I got my first chemo today, a lot of thoughts crossed my mind.
I couldn’t be that strong if I hadn’t such a family. My spirit was free of worries and I could focus on coping with the long treatment. Coupled with very good friends and colleagues, I am really very lucky.
At this final stage, the strength I gained so far will be instrumental in my recovery.
And so, for the next three weeks I go nowhere. I set my office in the room, I have DVDs, music, books and lots of work to do. I plan to be in full communication with the outside world via phone, email and Skype.
I am now locked in a clean hospital room for three weeks, where my recovery begins with the stem cell transplant.
After such a long treatment you don’t know what to expect. I read the materials, interviewed someone who has done it, talked to the nurses, but the real thing is when you go in. At least mentally, I was calm and ready.
Thanks to the love and support of my family, I checked in last night in a relatively very good shape. This is a good start.
From now it is three weeks and then recovery at home.
As expected, the closer I got to this milestone, everything was more difficult.
Last week I went to the process of stem cell harvesting. First, for five days I gave myself injections to induce their growth. Then for three days, 6-7 hours at a time, I was hooked to a big machine (picture below) where the stem cells were collected. This was a much tougher process than I anticipated.
Anyhow, this is all behind me and I am in the cocoon!
The medical team here calls the stem cell transplant as D-Day! I didn’t know it before, when I wrote the last update. Everything is related to the day I am getting back my clean stem cells via a blood infusion. This will happen on my third day. So today is D-2 and the release date should be D+18, etc.
The good surprise is that the hospital is very accommodating family visits. Everyone has to wear masks and gloves and the key is to protect me from ANY infection while my immune system goes down, before it goes up again.
Knowing that I will be locked in for three weeks, my schedule in the past 10 days has been hectic. I also knew that once I start the process, there will be certain restrictions that will last months. For example, no restaurants for six months, no fresh vegetables and fruits for many months, no Sushi forever, no large crowds, etc.
Therefore, I was on a roll!
Shoshi and I went to eat outside several times, went to see friends, see a magnificent dance show, and more.
Last Sunday we had a graduation party with over 80 friends. There were many reasons to celebrate: Neta’s university graduation, Lior’s high school graduation, Inbal & Pierre graduation from being single and my graduation from 20 months of treatments. Our good friend Hana volunteered to host in her beautiful house and Shoshi with a few girls worked hard on the preparations – food, flowers, and much more. The weather was on our side.
It was a memorable afternoon with good company, sunny beautiful garden, good atmosphere, happy friends and lots of good food.
It was also my opportunity to say a temporary goodbye to our many friends.
On the following Monday afternoon we attended Lior’s high school graduation.
When I saw her marching in her white graduation gown and hat, I realized how fast time flies. It was only yesterday that we came to Needham and she was a toddler.
I am sure that on this occasion she is as happy as I am.
And so as Neta is out of a university, Lior goes into one in Sep. It helps, but it wasn’t planned.
Inbal and Pierre are so lovely. It is a bonus to be around loving people. Their plan is to return to Africa in Sep. and I will miss them a lot.
Last Tuesday (yesterday) was a long day. I suddenly realized that I haven’t even started packing. Eventually I did and in the evening the Alon family and Pierre went to the hospital in Boston.
I don’t think the nurses have seen such a large entourage on a restricted floor. It was great to have all the family with me, helping to settle down physically and mentally: disinfecting my belongings, hanging posters, talking and having a good time – all six of us in a small room!
As I got my first chemo today, a lot of thoughts crossed my mind.
I couldn’t be that strong if I hadn’t such a family. My spirit was free of worries and I could focus on coping with the long treatment. Coupled with very good friends and colleagues, I am really very lucky.
At this final stage, the strength I gained so far will be instrumental in my recovery.
And so, for the next three weeks I go nowhere. I set my office in the room, I have DVDs, music, books and lots of work to do. I plan to be in full communication with the outside world via phone, email and Skype.
Optimistic as usual,
Yours,
Guy
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