Keep In Touch: May 2009

The next few weeks will be very intensive and this requires me to update you more often. As usual, let’s get first done with the medical update. The game of numbers can be a bit nerve wrecking. After a steady drop in Igg (the criterion for progress), I suddenly had a regression (the numbers went up again, but only once). In addition, I had all sort of stomach issues for the past two months, which really difficult, painful and didn’t help. It got to the point where I was hospitalized for 4 days. Before I describe the hospital adventures, a few words about the plan. Last Friday I started the preparations for the stem cell transplant. This is the end-game process I have been waiting for a year and a half. The whole purpose of the long treatments was to arrive to this point. It looks simple: for a few days I get injections (I do it myself) to induce growth of stem cells. Then, this week for 6-7 hours every day, I will be hooked up of to machines for stem cell harvesting. When they have enough (a few millions stem cells), they’ll put them in the freezer for later use. Then on my D-day 9 June (less than 3 days after the anniversary of WWII D-day), I’ll go back to the hospital for the stem cell transplant. In this process I’ll be locked in for three weeks (!!!) in an isolated room with positive air pressure and restricted access. The transplant is simple: the first 2 days I’ll get a very aggressive chemo to completely kill the bone marrow and the immune system and on the 3rd day I’ll get back my own stem cells through a blood infusion. From that point on it is a waiting game until the bone marrow is slowly rebuilt. Without an immune system I’ll have to be very careful not to catch anything and for this reason I’ll be locked for 3 weeks. Even the immediate family who’ll come to see me will have to put on gowns, gloves and masks. The success rate of this process in recent years has been good. Since it takes the immune system about a year to rebuilt, the game isn’t over after the 3 weeks in the hospital. The following 1-2 months at home will have to be under tight control of minimal visitors and restricted access. Since my immune system will undergo a ‘hard reset’, I will have to get all the vaccinations after a year as if I was just born! It is a start with a clean slate. We got a huge binder from Dana Farber with all the information about the stem cell transplant: before, during and after. Most interesting is the nutrition section, especially which kind of foods I will be NEVER allowed to eat. Some of them are my favorites: Sushi and grapefruit. At least they didn’t list all the Vafla, Metzupim and other sweets. So this is the plan and I am sure it will be fine. Spending three weeks is a small room will be a challenging mental exercise and after that, everything else should be easy. Back to last week’s hospitalization. Because the doctors wanted to run an array of tests on my stomach, I wasn’t allowed to drink and eat most of the time. The conclusion was that one of the chemo I was getting from day-1 (for over 15 months!) has known side effects and was the main suspect for my problems. Lucy for me I had this setback at the very end of my treatment, actually the last week of the planned treatments. If this had happened a few months ago, it would have been a major setback. The treatment would have stopped and the recovery delayed. During the four days in the hospital (I had my own room with a view), there were a few joyous moments and some important experiences. This was a great model exercise for the three weeks to come later in June. I had to think how to handle the planned three weeks of solitary confinement later on. The conclusions were simple: I must make a schedule and routine, stick to it religiously, take care of myself (shave, be clean, etc.) even when I feel lousy do work, read and be in touch with the outside world. I didn’t invent this. I once read a book about American POWs in Vietnam. Schedule, routine and tasks, kept them going forward in horrible conditions. My good friends came to visit me and we had our weekly Bridge game in the hospital. Inbal came and took me for a walk on a sunny afternoon. We discovered a nice park nearby. Shoshi brought me the things I like including some REAL food! Lior came to see me and gave me a Kenken book (the next thing after Soduko). Some of my friends joked why I stayed 4 and not just 2 days. A few of the nurses on that floor looked like they were taken out of the Vogue magazine… Last week I had a busy Tuesday with many tests to determine readiness for the stem cell transplant. As usual the most painful but important one was the bone marrow biopsy, which is drilling into my heap bone to take a sample. It is done by numbing the area and is really very painful. Luckily, on Friday I got the results and it is a GO for the June 9th transplant.
Since I’ll be locked in one room for the next 2-3 months (at hospital and later at home), I am trying to get out as much as possible, see friends, eat outside, visit places, etc. After the transplant I am not allowed to eat outside for six months. With the blessing of my doctor, I “drowned” myself in Sushi! The weather here is great: mostly sunny, a rain here and there and everything is green and blooming. My mother came from Israel for a week in time for Neta’s graduation and to see us. It was a great visit. Neta just graduated from Umass Amherst. We all drove to Amherst to attend the graduation which took place in a stadium (see some pictures below). It was a perfect day. Parking and transportation were well organized, the crowd of families and relatives (some 16,000) filled the stadium, the ceremony wasn’t too long, the speakers didn’t bore us with too lengthy speeches and even the weather was great. I was moved and touched to see Neta graduating. She did it on her own: registering, changing courses, finding housing and moving, working in parallel to studying, and more. Kol Hakavod Neta!!! As Neta just graduated from University, Lior is about to start university. Lior will graduate from the Needham High School in a week. My scheduled 3 weeks at the hospital were planned to start on June 7th and I postponed it by two days to attend Lior’s graduation on the 8th. Ten days ago Inbal took me to a baseball game (Boston Red Sox). Although the game is boring, it was a fun afternoon at the park. First of all, Boston won! The atmosphere was great. Thanks to my friend Andy, who 2 years ago took me to a game in Minneapolis, I even understood what was going on (and with Inbal’s help too). To avoid the huge crowd on the train, we escaped after the 8th inning. To enjoy the last few weeks where I was able to be outside and meet with friends, we go to every BBQ party, take short trips in the area and just go to see friends. In the pictures below you can see some of our outdoor activities: going to see flower gardens, butterflies, memorial day ceremony in Needham, Neta's graduation and the baseball game.

As I am about to start the final recovery phase, it is a good time to look back and reflect on the past year and a half. I call this process Reflections. The most difficult part was the period of the treatment when I didn’t see the end or the start. During 2008 my numbers went up and down and it was a mental challenge to keep an optimistic spirit. Driving to Boston very early in the morning was especially a challenge during the freezing winter. Rolling out of the warm bed before 7 am into a frozen car is not that comfortable. However, the great support of my family was unconditional and served like back wind in my sails.
Now for some useless and funny statistics - from late Oct. 2007 when I was diagnosed to date:

579 – days since I was diagnosed and started treatments
103 – round trips to Boston for treatments, totaling over 2000 miles
60 (at least) – Dunkin Donuts coffees bought on the way to the hospital
$1300 – spent on parking
130 – IVs (or needles) went into my arms
12000 – my Igg when it all started, a Dana Farber record high, twice outside of the scale! (up to 1600 is normal, 6000 is a very sick person)
4 – painful bone marrow biopsies
3330 – pills I took since starting treatments (average 6 pills per day)

And on this statistics note,
Ciao to all of you.
Next update will be from the cocoon in the hospital.
With even more optimism,
Yours Guy

At the beginning of my illness, little did I know that it will be so long.
I compared it to a Marathon and indeed it is a Marathon. The purpose of the treatment is to suppress and kill the bad cells to a point where a stem cell transplant can take place.
Finally after a year and a half of treatments, starting with very bad numbers (record high), I have a date for the stem cell transplant – 9 June 2009.
The last two months have been difficult. I spent most of the time in bed with stomach pains, nausea and a few other ugly side effects.
Nevertheless, when you see the end in sight, it’s a small price to pay. At least there is a horizon to focus on. I am now convinced that the hardest part of the illness in the long period of treatments, where there is no beginning or end. You just have to pull yourself to do as told time and again, with the ups and downs, freezing winter, drives to Boston before sunrise, cope with side effects, etc.
So, the next few months aren’t going to be easy but very important. At present I go to my last cycle of treatment. Towards the end of May I will undergo many tests (you name it), to ensure that there will be no surprises before they kill my immune system. Part of the preparations is to induce stem cell reproduction in my blood and then stem cell harvesting to get enough stem cells. They’ll keep my stem cells in the freezer for later use. On 9 June I will be admitted to a hospital for 3 weeks. They’ll put me in a “solitary confinement” in a very isolated room. Not to worry: I’ll have my laptop with a camera and a phone to keep in touch. The treatment is non-invasive and simple. Step-1: kill my bone marrow (immune system) with very aggressive chemotherapy for 2 days. I was told that what I had so far was a picnic, compared to what I am about to get. Then, with zero immune system, my stem cells which were collected the week before, will be infused back to me (blood transfusion). The body should then rebuild the immune system and after 3 weeks I will be done. There are some risks, but I think positive, not like a Polish mother…
The next step is recovery at home – still in isolation, minimal visits, masks and gloves, etc. The recovery duration is very patient dependent and I hope that for me it will be a quick one (1-2 months). In any case, I will be grounded for travel for at least 6 months.
Since my immune system will go a hard reset, a few months down the road I will have to get all the vaccinations and immunizations like as if I was just born. All the past has been erased. I got a huge binder with everything about the process: before, during and after, including nutrition, personal care, and lots of other information. The binder is a hit and everyone in the family already read it.
As I look forward to the last and most critical part of my treatment, I know that there could be all sort of set backs. Yet I am optimistic and believe in a smooth sail.

Now that I explained the medical situation, I can tell you what happened in the last two months.
It is now official: Inbal and Pierre are engaged! First, Pierre asked my permission which was very sweet and old fashion. Needless to say I was very happy to say “Yes!”. When Shoshi and I wanted to get married, we simply talked about it and then notified our parents. Two weeks later, Pierre surprised Inbal by proposing to her during a weekend in Cape Cod.
In April we had a big family get together and the Passover dinner in Paris! You should have seen the Excel file of all the flights and accommodations arrangements. Inbal and I came from Boston, Pierre came from a short visit to Africa, my father came from Israel, my mother from Italy, my sister, her husband and 2 kids from Holland and England. Thanks to Pierre’s family in Paris, my uncle Moishale and Francoise, we had places to sleep instead of cold hotel rooms.
Getting my father to Paris and taking care of him was quiet a task. It was a quiet visit, not running around, and mostly spending time with the family. On a sunny afternoon we took a tourist boat on the Seine river for sight seeing. First time for me.
Seder Pesach was remarkable. We were some 29 people. Thanks to my cousin Danny and his wife Nicole who hosted the evening, we had a very nice evening. Mickey, Iris and Moishale all helped too. It was wonderful. The following evening we were invited to dinner by Pierre's parents. It was the first time that almost all members of the two families got together. This was all planned long before that the kids were engaged.
I am glad I managed to squeeze this travel before I will be grounded for months.

Back at home, summer descended on us at once. One week we still had freezing temperatures and the next week it was summer (almost no spring). Within two weeks everything popped out from the ground, the bare trees turned green and you could hear everything growing fast. It is just amazing to see this every year.
Thanks to my friend Danny in Needham, I do all sort of outdoor activities. Usually he takes me to pigeon clay shooting with a shotgun. This time it was a navigation course with a compass and a map, organized by a local society. Getting out of bed was great. It was a sunny day, easy walk around a lake, good company, and a good exercise.
Last weekend Neta and Lior did the Walk for Hunger in Boston. I used to do it with them. It is a 22 mile (36 km) walk that goes from Boston center out and along the Charles river and back to Boston. They did it in 6 hours. For both of my girls it is the 5th year that they do it. The idea is to raise money for the food pantries in Massachusetts and I thank all the people who contributed and supported Lior and Neta in this event.
In the past two months I needed more care and support than ever before. Shoshy took really good care of me, day and night and I couldn’t do it without her.
Within a month we’ll have two graduations: Neta from the university (Umass Amherst) and Lior from high school. In early June we plan to have a big BBQ party in our back yard to celebrate the graduations, the young couple engagement and for me going to be locked in a hospital for 3 weeks.
The pictures below are from the events in the past two months which I described above. I hope that soon you’ll see some better and more professional pictures. I finally got into the digital SLR camera business. First I attended a one day course run by Nikon. It was an eye opener that got me the appetite for more. The next step was going on Ebay and getting a good Nikon camera and a lens. Now I need to practice and share. I always love to take pictures and now I have a great tool. Stay tuned.

Bottom line: as I get closer to the finish line, it gets much more difficult as I already witnessed it in the past 2 months. Yet the notion that remission is around the corner is what gives me the strength.
My supporting family and my optimism will help to cross the finish line, which is now in sight!

Yours
Guy