Sunday, November 04, 2012

Reflections on my 40th Birthday

So today was my 40th birthday. I had a lot of mixed feelings about my birthday and did not want a big celebration, much to the chagrin of my wife and mother. For some reason, I felt that 40 meant that I was getting old. While nobody likes to get older, I realized I needed to take a different perspective altogether. In many ways, I am lucky to be alive. I was diagnosed with CML over 6 years ago. Not too long ago, the life expectancy of someone with my diagnosis was 5 years. That would have meant that I was not likely to reach 40. That was until Gleevec became available. This medication truly has saved my life and allowed me to reach 40 and be upset about it. How lucky I am.

I did have a very nice birthday. I did some of my favorite things. I took a long bike ride in the beautiful fall weather. I got to relax and spend time with my family. We even went to my favorite restaurant, Guido's in Providence where I ate my favorite dish of all time, linguine with white clam sauce. You can see the pictures above. Needless to say, a really nice 40th birthday.

I am thankful for turning 40 and all the wonderful things I have in my life. I am thankful to my family for always supporting me. I am thankful that I can be upset about getting older rather than worrying if I will make it to my next birthday.

Monday, October 15, 2012

Still Undetectable

I have not written for quite some time so I thought I would provide an update since a lot of people have asked me about how I am doing. To sum up how things are going, they are really good. I went two weeks ago for my semi-annual check up with Dr. Stone. Last week I received the results from my latest PCR test and they continue to remain undetectable. While I was there I took a picture of the Healing Garden which is located near the cafeteria at the new building at Dana Farber. This was a nice urban oasis and I would recommend checking it out if you happen to visit the hospital.

The other news is that I dropped my dose of Gleevec back down to its original dose of 400 mg. Some of you may remember that my dose was increased to 800 mg several years back after one of my PCR tests started moving in the other direction. It turned out that there had actually not been an increase, in fact there was a decrease as I had another one taken before I started the increase to 800 mg. The higher dose pushed me into molecular remission pretty fast and wasn't horrible. I did have some side effects from this, however, including GI issues and my eyes were constantly tearing. Almost two years ago, Dr. Druker moved the dose down to 600 mg and last spring down to 500 mg. That was fine until the insurance company changed and started charging me two copays for the meds. Needless to say, Dr. Stone dropped me back to 400 mg and that is what I started doing last week.

Several people have asked my about the annual Light the Night Walk which took place several weeks ago. My team did not participate this year as we decided to take the year off from fundraising. We have been doing this great event for 7 consecutive years and I felt that it might be time to try something new. I am looking into the possibility of doing Team in Training for bicycling as that has become my latest hobby. I will keep you posted.

In summary, life continue to be good and CML is in check. Let's hope they both stay that way.

Friday, June 08, 2012

Portland in the Spring

I recently returned from my annual visit to Portland to visit with Dr. Druker and Carolyn Blasdel. I had gone out by myself this year as schedules did not work out well for an extended visit. I was fortunate to find that JetBlue was now flying directly from Boston to Portland. The only downfall is that the only return flight they had was a red eye. Needless to say, I was pretty tired upon my return.

My visit was a little different than in past years. The clinic was much busier than I had ever seen it and I was put in a different room. This did not bother me too much. My meetings with the medical team were both excellent as usual. I never felt rushed and could ask as many questions as I wanted. This year, Dr. Druker had an oncologist from another country shadowing him.

We talked about dropping my Gleevec down a bit since I have remained undetectable based on my tests at Dana-Farber. My tests through Molecular MD have always found trace amounts of cells, but it is an extremely sensitive test. This time, my labs were accidentally run at the OHSU laboratory instead. They rated their lab as somewhere in the middle between Dana-Farber and Molecular MD in terms of sensitivity so I was not sure where it would end up. I received my results this week and the OHSU lab also came back as undetectable. Good news again!

We decided to lower my dosage to 500 mg from 600 mg and then check my Gleevec level next year when I go out for my visit. I was comfortable with this move.

On a more fun note, I took a very cool tour of Portland's food carts while I was there. In Portland, they have over 400 of these carts, most of them in permanent pods throughout the city. When I have visited in the past, it has always been hard to decide which one to choose. This tour allowed me to sample many. I would highly recommend it if you are visiting Portland. Here are some pictures.

Saturday, March 03, 2012

6 Years

I was doing some errands this morning when I received an email from my CML buddy, Wanda, who let me know she was thinking of me today. At first I thought, what is she talking about. Then I remembered the date. Today is the 6th anniversary of my diagnosis. I am not sure if this is a date worth celebrating or forgetting, but it was certainly interesting that I had totally forgotten about it.

A lot has changed in 6 years. Fortunately, CML has been placed on the back burner. I will be reminded later this month when I have my 6 month visit at Dana Farber. In May, I will be returning to Portland to visit with Dr. Druker. I continue to be on 600 mg of Gleevec and so far so good.

I am thankful that CML has not taken over my life, but become a bump in the road. Let's hope it remains this way.