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.


Anonymous said...

Hi Jon,

We all enjoyed seeing you and your family this past weekend. You also happen to look quite good right now. I see a change from a few weeks ago. Maybe this is due to everything stabilizing a bit. Maybe the Gleevec is really kicking in and working the magic as you say. It still annoys me that I can't wrestle you to the ground as I normally would, but I don't mind letting you win right now.

After seeing your latest post I felt it was appropriate for me to comment publicly. I usually prefer to discuss everything with you in private rather than in this public forum, but I think it is incredible that you have chosen to communicate with everyone else this way. Hopefully it will keep others informed about your progress, and help individuals around the world who have been diagnosed with CML.

When you were diagnosed I always had hoped that something in my body could help completely cure you. As your brother why shouldn't I be able to help you in some way get through this? Unfortunately, I was not a match for you which was extremely difficult for me to hear and I think for you as well. It would have at least made something easier in this already awful process. I think it should be considered very positive news that a potential perfect bone marrow donor match has now been identified. Certainly further health testing is needed. As you say, you may never need this individual, but knowing that he/she exists is very important and should be recognized. It also shows why it is so critical to donate your blood to public bone marrow banks.

We certainly understand how difficult and scary this diagnosis has been for you. As a family we will continue to maintain a positive attitude and support you in every possible way we can until you are completely cured.

The strength, extrodinary courage, and postive attitude that you have displayed is beyond incredible. We all thank you for becoming the expert on CML and trying to help others with it. All of this will only help you get cured more quickly.

We love you very much and will see you soon.

Dave, Lisa, and Josh

Jon Gershon said...

David, Lisa, and Josh,

I would much rather have your love and support than your bone marrow anyday.



Sue said...

These two comments have left me in tears. As my husband asks me why I am crying, i reply, "we must thank god for our health everyday, for tomorrow is uncertain."
Thanks again for your periodic messages. These are what help all who care for you understand what your going through. I whole-heartedly believe that keeping your faith and optimism will help you through this. We can all pray for you and give you words of encouragement but it's YOU, after all, who has to live with this and the positive attitude that you emit everyday is what will see you through this. You truly are an inspiration for those affected with HML and I'm sure that your research, along with all of the advice, motivation and correspondence you inflict on all of those you've come in contact with, will continue well after you've pulled through this. That's just the kind of man you are.