Thursday, May 7, 2009

Getting closer to the finish line

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




Lior and Neta in the Walk for Hunger in Boston. I just came to see and support.
Just a few interesting houses in the neighborhood:

Thursday, March 26, 2009

The Igg story and Good News!

Some really good news: I am making very good progress! The latest results indicate that I am closer to the end of the treatments – a stem cell transplant followed by remission.
It can all happen in the next 2-3 months. It’s not done until it’s done, and as usual I am optimistic.
Without getting too technical, it’s the Igg story.
Igg is a parameter obtained by a blood test with direct correlation to the status of my cancer. The high number is bad, the low number is good. Normal is 600-1,600. A bad number (very ill patient) is 6,000.
My starting point a year and a half ago was 12,000 !!! With this number I have the “honor” of breaking many records. I recall coming to the first oncologist meeting. The doctor couldn’t believe that I am alive, walking, breathing, driving. When I asked “how bad” they gave me a polite answer.
It was only a few months later when I did my own research that I really understood my bad starting point.


The graph above shows the battle for my life in the past year and a half: from left to right - starting at a very critical number, the ups and downs, slow progress at time, two clinical trials, multiple chemotherapies, and finally getting closer to the finish line.
I owe a lot to the top notch medical team at Dana Farber and especially to my doctor Irene. Taking me from a critical point to where I am today, through the course changes and up and downs, is a great achievement. I told her that when I am done, she’ll write about my case in the prestigious New England Journal of Medicine and she’ll be very famous.
Let’s not open the champagne yet, and just put it in the fridge.
Within the next 2 months I’ll probably go through the stem cell transplant and then the recovery. My goal is to be back on my feet, healthy and energized by mid-summer.

Now that I gave you the good news and some medical info, I can tell you what happened in the last two months from the last update.
As the numbers get better, the accumulating effects of multiple chemotherapies twice a week take their toll. In spite of feeling lousy with nausea and with all sort of issues, I know that soon it will be over. So a bit more suffering is no big deal.
I manage to work from home and keep myself really busy, trying not to miss ant beat: many activities via conference calls, emails, and talking to customers. Not losing weight is a challenge with the nausea. I simply push it down by eating food. So far so good.
I am still driving back and forth for my treatments. Although I must admit that in the -15C and dark early mornings, it was difficult rolling myself out of bed and telling my auto-pilot to take me the Dana Farber in Boston.
The trick was not to be discouraged even when the results were not so good. This was the real test. I guess with positive attitude, everything is possible. Sadly I see that most of the patients around me (some 20 in the same clinic) are not in a good mental shape. If you let the disease take over, you are done.
In late Feb. my sister Iris and David her husband came from England for a week. It was great to be closer, catch up on a lot of stories, family gossip and do some sight seeing. I wish that our family was closer and not scattered all over between Israel, US, England and Holland.
Two weeks ago our relative in Ottawa, Maurie Karp died of medical complications. I flew to Ottawa for two days to be with Dorothy and the family. Maurie and Dorothy were our closest family during our 4 years in Ottawa, some 30years ago. Maurie was funny, knowledgeable and a good, honest and successful businessman. I recall our many discussions about current events, Israel, the US and many other worldly issues. We’ll all miss him a lot. All the flights and connections were not easy, but I felt that I had to do it.

The pictures below are some of the highlights of what happened in the last two months.
Shoshi and I went to Florida for 4 days with our good friends Galit and Noah. It was a combination of relaxing and a bit of sight seeing in 25C while Boston was freezing and under a pile of snow. We saw beautiful sunsets, powdery sandy beaches, nature reserve with alligators and birds, rode horses and more. Shoshi looks cool on that white horse! This is before she fell of this horse when it started galloping.
In the few family pictures you can see all of us. This is my thing: whenever all of us are together I take many pictures.
We had a small Purim party at home – just our family and Pierre, with costumes and making of Oznei Haman.
Shoshi and I went to the Berkshires in Western MA for a few days vacation. In the area we toured a few art galleries and museums, as you can see in a few pictures.
Dani my friend in Needham is keeping me sharp with clay pigeon shooting. The little orange clay pigeon that I hold is the thing you need to shoot down with a quick reaction.
Dani has the machine that throws the clay pigeons in the air and brings lots of ammunition to have fun at the shooting range. Together with Mark I feel like we are the three musketeers.

This is for now. Due to the faster pace of events I may have to update more frequently, which is a good problem to deal with.


Yours, always optimistic from day-1,
Guy