Keep In Touch: April 2010

This past February I was glued to the TV watching the Winter Olympic Games in Vancouver, Canada.

What do skiing and snowboarding have to do with my case??? A lot!

If you recall in my last update I described the new treatments, coping with bad numbers, side effects and more. What really got my attention in the winter games were not the medals, how fast, the ranking or technical details of the races, but rather some amazing personal stories. They were quiet a number of athletes who had an amazing story to tell of coping with hardships, injuries, setbacks and health issues. They described how they dealt with everything and made a comeback, some even took medals in the games. True personal triumphs.
The many heart warming stories strengthens my spirit to carry on with my fight.
There are many parallels to my story. Two years ago when I started the blog I compared my ordeal to a marathon. Little did I know at that time how much it is true. Coping with bad news, remaining focused and staying optimistic is the only option. However it is a difficult task to keep in this mode all the time. It is work in progress.

In the first 2.5 months of 2010 I went to a very aggressive treatments. With time it became a lot more difficult than I anticipated to a point that I can say that these months were among the most difficult ones in the entire 2.5 years illness period. The high frequency of hospital visits (including both weekend days), the duration of the visits, lots of needles and many side effects are just a few to mention. When I got up early knowing that I have to go through another long day of treatments, I sometimes complained to myself. Rolling out of bed at 6 am when outside it is New England’s winter, isn’t fun. But the complaint was short lived. I learned how to crush it immediately and perform the morning drill like a soldier. Sometimes I got to Dana Farber (some 10 miles from home) without remembering how I got there.

After 2.5 difficult months my numbers still climbed up – bad news. The intensive treatment put my travel plans for Inbal’s wedding in France and Israel in serious jeopardy. I could get the treatment abroad as needed but it would have cost me over $10,000. I tried negotiating the dates of the treatments but since I needed 2 weeks off, there was no way to work around it. Sometimes in life bad news is good news. I am sure you all experienced this phenomenon at some point in time.

My new treatment is all with pills, no needles, no IVs, just periodic tests.

Bingo! I can take my chemo pills anywhere I go and my travel plans are not affected.

In mid-March I had another full screening day: a lot of tests and the not-so-pleasant bone marrow biopsy (bone drilling). I got already used to that and drove myself to and from Dana Farber even after this painful procedure, because I wanted to. Being in control forces me to keep my head straight and cope with the situation better than in any other possible way. I have many examples around me to see what if a different attitude is adopted. Pretty depressing.

And so on this past Tuesday I started a new treatment and with it a new beginning and many new hopes. Let’s hope that this one is it!

At the end of January Inbal came from Uganda for a short visit after half a year of absence. It was wonderful to have Inbal at home, although she was all over during this stay: work in Boston, local friends, conference in Chicago and friends in Toronto.

As you probably read in her blog, Inbal friends organized a very nice bridal shower for her with food, presents and games. You can see below some of the pictures from this event. It was so important for me to have most of the family together again (Lior came from College), and yes not only for the family pictures!

By now, we have completed all our travel plans for the weeding in France and Israel. I need a complex Excel file to track who is coming from where, as our family is scattered on so many continents. Our travel agent (who did an excellent job) should love clients like myself.

Neta is settling in Colombia. She moved to live with another family, school work is good and she starts to enjoy her stay.

The beginning was difficult. Neta has a blog too with interesting stories and pictures from Colombia : http://netaalon.blogspot.com

My condition is a puzzle to my doctors. It is a strange paradox: in spite of my numbers going in the wrong direction, I feel good and better overall! Go figure out…

Two weeks ago I went on a short business trip to the West Coast. I was glad to be again in the trenches, although it wasn’t that easy as I thought. Yet the feeling of accomplishment and participation is another important building block in the tactics of dealing with my situation.

Next week I will travel again for a long week for our annual trade show, after two years absence. I can’t wait.

In late March Shoshi went to Israel for a short visit. I was left alone with Shadow the cat and tomorrow Shoshi is back! As I have said many times, we are a very dynamic family!

So this is it, you are now updated. I hope to bring better news next time, although the process may take longer than anticipated.

The key is simple: keep my head up and be optimistic.

Yours

Guy

Our cat Shadow. She hibernates all day and active at night