Wednesday, May 31, 2006

A Rose is a Rose

I have been writing fewer updates since there has been little to report. Of course that is a good thing, but it just intensifies the waiting game. Next month, I will have my first blood test to determine whether I am having a cytogenetic response to the Gleevec.

In the meantime, I was thrown for a bit of loop over the past couple of days. My side effects have now been minimal to nonexistant. Two days ago, I became really tired in the morning and took a 2-hour nap. I am not a napper and throughout this process, I have never felt tired. This was a little worrisome. Was I now getting a new side effect? The other strange development was that I started having a couple of bad leg cramps again. I had not had this side effect in about 6 weeks. I took some tonic water as suggested by my doctor. The next morning, I woke up with intense abdominal problems. I won't go into much detail here although you can use your imagination. It turns out that I caught the stomach bug that my youngest daughter had last week.

I guess when you have CML, you become hypervigilant to any physical symptom you might have. I am now over the bug within 24 hours and back at work. Sometimes a stomach bug is just a stomach bug.

Saturday, May 13, 2006

Twelve for Twelve

Several weeks have gone by with little to nothing to report. It is funny how life continues and how cancer can be on the backburner. I received a call this week from the search coordinator of the bone marrow tranplant (BMT) team at Dana-Farber. She let me know that they had found a 24 year-old male whose HLA typing (I need to research more about what this means) matched me on 12 of the 12 items. That was as good as it could get for a BMT donor match. Ironically, this news came a day after I received a $1900 bill for lab tests which I assumed was related to this search. Cancer is expensive undertaking. She told me that they will do some further health screening to ensure that this donor is healthy. In the meantime, they will continue the search to have a backup.

This "insurance" of a donor gave me some mixed emotions. I was certainly happy and relieved to have match, but the more I learn about BMT, the more scared I am to have to ever have one. If all goes well with the medication, this whole search process could be a moot point. Also, with all the medications on the horizon and the current research trends for CML, it is quite possible that a medication that cures CML may be out sooner rather than later. In the meantime, I need to give Gleevec a chance to work its magic.

I have also been keeping myself busy corresponding with numerous people who have been affected directly or indirectly by CML. There is a vast community that is quite supportive of each other and I have been impressed and reassured by my correspondences. I have even been on the other end, despite my recent diagnosis, of giving advice to someone who was just diagnosed. In two months, I have developed an expertise in CML. My wife and I were just talking about how we couldn't believe it has only been 2 months.

I wanted to recommend a book to people that I am almost finished with. I have been reading Erin Zammett's My (So-Called) Normal Life. She is an editor with Glamour magazine who was diagnosed with CML at age 23. She writes in a very matter-of-fact manner about her experiences with this disease both in a column for Glamour as well as in her book. You can read her diary at the LLS website or at Glamour magazine. I have found this to be extremely useful information, especially for someone who is newly diagnosed. I believe her book is coming out in paperback next month.

Later this week, I am back at Dana-Farber for my monthly checkup. I am not expecting any big news at this visit, but it is always a bit of an ordeal when I take a trip up there with my wife. My youngest daughter will be there as well. The waiting room at the outpatient clinic is a hard place to be. I always feel a little strange since I have my hair (well most of it anyway) and I am not wearing a mask to keep out the germs. In some ways, I feel out of place like I am in the wrong building altogether. Despite this strange sensation, it is a wonderful hospital and I am very pleased with my treatment and team of people who help me there.