Keep In Touch: February 2010

Uncertainty is a silent enemy. It pops in and out and plays games with your mind.
During chapter-1 of my illness I thought that the game is 50% mental. Now it is 90%.
In the two years of treatments before the stem cell transplant, I had my ups and downs but the direction was very clear toward the finish line. I did not occupy myself with “what if it doesn’t work” scenario, and nor did I educate my self about it. The finish line was the target – period! It made it easy to overcome the obstacles, treatments, inconveniences, and duration of what I call “chapter-1”.
Chapter-2 is a whole new ball-game because it is open-ended. Now facing the failure of the stem cell transplant, I started to read and ask about relapse treatment, protocols, prognosis and the picture is complicated. This time it took me a few days to re-program my mind to cope with the new situation and ensure that I stay with the same positive and optimistic attitude.
I recall my dad’s stories about WWII and the Israeli Independence War in 1948. What always strike me is the fact that these were long wars, with a lot of uncertainties, against odds and yet people carried through to triumph.
So my challenge is smaller by any perspective.
Talking about endurance…
In the last treatment I met an old guy with a Navy cap and an flying jacket. Being curious, I started chatting with him. This chap is a WWII and Korean War veteran who flew B-25 and B-29 in WWII and later first P-80 jets in Korea. He then joined the Navy and retired years later. I need a whole new blog to tell his stories. The main takeaway from my conversation with this guy, you may guess… is endurance and hope.

The treatments as I mentioned last time are now more intensive, more frequent and challenge my stomach. Admittedly I don’t feel as well as I used to during Chapter-1.
Yet I manage to roll my self out of bed at an ungodly hour in the cold morning and drive to Dana Farber. I guess when you don’t have a choice, you do what it takes. Thanks to my friend Danny I have some new CDs that cheer me up on the way: a collection of Aris San and others. Sometimes I arrive to the hospital without recalling how I got there.
In early January I went skiing with Lior. A promise is a promise and on that Saturday morning the temperature was -19 C (1 F)!!! This was a bit too cold to ski. We had to rest every 2 hours, go inside and defrost in front of the fire plkace in the chalet. Nevertheless, it was great skiing.
Later in January I took a break, longer than the one week between cycles) and went to Israel with Shoshi. This was a calculated risk and indeed my numbers are not good. Because Multiple Myeloma is chronic and will be a long story, life goes on and I just can’t ground myself. There will be ups and downs and I’ll have to cope with them.
My treatments include two chemos which run for a full week every day, then twice a week, then a week off, and so on. The plan in general is to run the course till July. Then re-evaluate and hopefully, if the numbers permit, move to maintenance (low dosage chemo on a weekly basis).
To demonstrate to you how much I am already familiar with Dana Farber, I can guess the expected parking level (1-7) based on my arrival time within 15 minutes intervals. If I arrive early I park in the higher levels. I never miss.
My doctors really love me. For them and for good research I am a perfect candidate called a “healthy-sick” person! Other than my cancer, I am very healthy, which is great for any clinical trail. Most people have all sort of issues and you never know what really works well and why. This my humble contribution to the medical science.

Last month there was a devastating earthquake in Haiti. Boston is the home for the 3rd largest Haitian community in the US. Many local Haitians are nurses in the many medical centers in Massachusetts, including at Dana Farber. In the days following the earthquake, during my treatment I could spot many nurses crying. Can you picture this: a nurse administering my chemo while in tears and telling stories of missing family members and friends in Haiti. Really sad.

Our family is becoming more international than ever before: we now have representatives in all 5 continents:
North America - Shoshi, Lior and I
South America – Neta
Africa – Inbal & Pierre
Europe – Iris & David
Asia – Zvi
Australia – Ruthy
Wow !!!!! No wonder our travel agents love us.

Now that you know all about my medical status, I can share with you the events in the last month and a half. After all we need some fun too.
When I sit down to write a bog I want to recall all the little and big events. How do I do that? Simple: I have a file on my Blackberry where I add topics as I go along. When the time comes to write the blog, I simply don’t have to remember.

Once Neta left to Colombia, the house became empty again. The tenants are Shoshi, myself and Shadow our cat. Two weeks later we left our Shadow all alone and went to Israel for a wonderful family visit. Thanks to our friend Moshe, who took good care of our cat, we got a picture of Shadow every time he came to feed her. It was so funny to get this lively updates.
To make sure that I’ll be OK on the long flights, I stuffed myself with all sort of pills and it worked. I flew in my sleepers and had 4 seats all for myself, even better than 1st class.
Israel was wonderful. First it is not often that I am there with Shoshi. This time it was even better: we had Iris there too. Being together and spending time with Zvi was much needed to both sides. My father still doesn’t know anything about my illness. It was a decision I took from the get go due to his sort term memory problem. Please help me to keep this secret.
We were very busy from day-1. When I left Boston it was -15 c. In Israel when the temperature “dipped” to +10 C, everyone were talking about how cold it was… There were hot days too, like in any “Israeli Winter”.
As a tourist you can really enjoy everything without being preoccupied with the problems facing this tough neighborhood.
The food was unbelievable. You don’t have to try hard to find a really good place to eat. The coffee was great, even in the smallest gas stations. It was sunny most of the time and as a result of the heavy rains, the country was covered with carpet of flowers and fresh green.
Alon, my brother in law took all of us to see the flowers in the desert, not far from the Gaza strip. It was surreal: here we walk in red carpets of anemones, taking pictures, and 400 meters from us are the first houses of the dense Gaza strip. It was all very quiet this time.
We went to see Sderot (my first time). It is amazing to me that this little town was under random rocket and mortar fire for 7 years. In Netivot, Alon took us to an unexpectedly amazing restaurant. Go figure out – of all places. For those of you who are not familiar with Sderot and Netivot, they are relatively small and poor towns, somewhat forgotten and in sharp contrast to Tel Aviv and alike to the North.

During our stay in Israel we went to two wonderful shows: Yehuda Poliker and Shalom Chanoch. We had to blend some culture in between the chase to see family and friends.
I took a time out from my vacation and went for a full working day at Orbotech in Yavne. It was really wonderful to see my colleagues, update and get updated. I wish I could do it more often. With all the gadgets and electronic tools, there is nothing like face to face and hands on.

Last time I told about an Israeli lady who contacted me via the blog. She has Multiple Myeloma. I went to cheer her up and share the experiences from my stem cell transplant. I felt obligated to tell her what I knew and minimize the uncertainties. It is always easier to face something that you are better prepared for.
Thanks to our friends Tova and Haim, we participated in Seder Tu-Bishvat (a modern tradition in which on Arbor Day we have a big meal like on Passover Eve, but with fruits, vegetables, cheeses, etc.). We read the special Hagada, sang songs, ate a lot and it was a very unique evening with some 20 friends.

One of the most relaxing moments were during the visit to Vered and Haim. They live in a village on the way to Jerusalem. Haim took us on his ATV to the forest and the nearby hills to see the many flowers – carpets of anemones (Kalaniot) and cyclamens (Rakafot). We could not make a single step forward without stepping on a bunch of flowers.
We then sat in the middle of a wheat field, with the green hills in the background, and drank freshly brewed Turkish coffee that Haim made with his ‘coffee kit”. Life is good!
A lot of good people I Israel do volunteer work we never hear about. It is heart warming to hear such stories: The hair stylist that Shoshi goes to when visiting Israel, closes the shop every week for a full day and volunteers to take care of women in a women’s shelter nearby. Or the ex-Orbotech executive who volunteers with an organization for troubled youth. I am sure there are many more.

On the last evening before leaving Israel we have a tradition: we stay in one place and everyone comes to say good bye. It is always great to see the family and friends that we don’t see that often because of the geography.

And so on Feb. 3rd early morning we took off back to Boston.
Getting back in the routine was good: work, home, treatments. Soon Inbal will come for a quick visit. Before we can say “Jack Robinson” it will be May and the wedding of Inbal & Pierre. We can’t wait.

This is it. Stay healthy, safe and warm.
Yours optimistic,
Guy

On the slopes at -19 C !!!