Tuesday, January 02, 2007

A Year to Remember

Happy New Year! So 2006 was not the greatest year for me and my family. Getting a cancer diagnosis can put a damper on even the brightest moments in a person's life such as having a new baby. On top of that, other events happen in your life that you are forced to deal with no matter what your physical and mental health status might be. This year posed all of these challenges for me and my family.

Fortunately, CML has become less of an issue everyday. At my most recent checkup after Christmas, my doctors were very pleased with my progress and felt that I was ahead of where they were hoping I would be at this point. Technically, I have had a complete hematological and cytogenetic remission. I am working on the final remission which is molecular. I am almost there.

Needless to say, I am thrilled with the news and the progress that Gleevec has allowed me to attain. Interestingly, the effects I am now feeling most are related to coping with the diagnosis. I think I have had a bit of a delayed reaction to CML. Initially, I was so focused on fighting this disease, learning about it, and raising money for research, that I did not focus on what having cancer has meant.

Last week I went to Dana-Farber for a checkup. I took the train to the hospital for the first time and had a lot of time to think about cancer and the hospital. I find that before going to the hospital, I become very irritable. I am not nervous about my appointments, because I know I am doing well. Instead, I feel angry that I have to deal with any of this nonsense. I love Dana-Farber, but when I sit in the waiting room, I think to myself, why should I have to be here. I am sure everyone around me in the waiting room is having the same thought.

Perhaps it was distraction or denial before, but I must now face the fact that I have cancer and will have to live with it for the rest of my life. It reminds me of the email I received when I first signed up for a CML discussion group. "Welcome to the club that nobody want to belong to." I think they lifted that line from Gilda Radner, but it is certainly appropriate.

Despite all the emotional impact CML has had over the past year, I have certainly learned a lot about myself, my family, friends, and cancer. My hope for this New Year is that it will be a lot less stressful with no major bad news to try to cope with. May I also reach molecular remission so cancer take a back-burner to more important things like living and enjoying life.


Lori said...

Happy New Year, Jon! I've been so busy that I haven't been keeping up with you. Good to hear you are doing well, and congrats on the remission. Maybe we can get together for coffee again sometime soon. It really helped to sit and talk to someone who was going through the same thing as I am!

Anonymous said...

Our hope is for your continued good health and great response to Gleevec. We are with you all the way.
Mom and Dad

Anonymous said...

I am hoping 2007 brings happier events to the lives of you and your family. I am very excited to start working with you next week. In spite of all you've been through this year, your energy and passion behind PA's expansion has only gained momentum.

Happy New Year!

Anonymous said...

G'day Jon,

Just found you blog from James's CML Blog...I thought I'd take a look.

You seem to be coping very well with CML. I was diagnosed in Oct 05 and I'll agree with you that sometimes you get so bogged down with learning, tests, etc...that you sometimes forget how you are dealing with it. Keep positive mate because that's what will get you through.

I'll keep checking up to see how you're getting on.

Take care, Matt

Sue said...

Hi Jon. Reading this most recent blog it's hard to believe how fast time flies by. I remember how I would look forward to reading your next update so that I could respond with some (hopefully) inspirational message. But as time wears on and I hear how well your doing on your meds, the urgency of posting my messages just doesn't seem as important anymore. Then after reading this blog it makes me realize that even though you have the cancer in check this is something you will have to live with for the rest of your life. Which means that there will never be a time where our inspirational messages to you and your family would fall on deaf ears. Even though we do not discuss your situation much anymore, keep in mind that I still say a prayer for you with hopes of your continued success and will now add to my prayers that god give you the strength to cope with the reality that this is and will (unfortunately) always be a part of your life. One more thing before I go, can you post a more recent picture of your girls on your next blog, with melissa would even better. Stay strong.