Wednesday, October 15, 2008

A New Normal

Wendy and I attended a support group for survivors of blood cancer and their caregivers last night at the Stanford Cancer Center. Unlike our last (non) experience at Good Samaritan this one actually had people attending. It was run by an LCSW that volunteers with LLS and an oncology nurse that works at Stanford Hospital.

The group was attended by 2 cancer survivors (including myself) and 3 caregivers (including Wendy). It turned out to be a good size for such a group as each person got plenty of time to talk. Interestingly, I was the only male in the room.

The LCSW directed the meeting, mediated topics and comments, and offered some very good insight and advice based on each individual's discussion. The oncology nurse provided some medical knowledge as well as additional advice and background on dealing with cancer, it's side effects, and it's treatment.

From the meeting I took away a few thoughts that I think made the experience very worthwhile. There were two individuals attending whose significant others recently received diagnoses of blood cancer, one with AML (the acute form of my cancer) and one with Hodgkins Lymphoma. It saddened me greatly to hear of how much their loved one's cancer had affected their lives. Each was currently preparing for a stem cell transplant and each spouse was in the hospital full time. It was wrenching to watch them explain how painful it was to watch their loved ones go through such debilitating treatments and how difficult a time they were having coping with the way their lives and relationships had changed.

In some ways this made me feel guilty for having such a difficult time working through what my own cancer means to me. In comparison to these two people and their spouses, mine is a walk in the park. In another way though, it became very real how much more difficult things could be and how thankful I should be for the breaks I do get. A few people actually commented that dealing with an acute cancer like AML or a chronic one like CLL or CML is difficult and painful in different ways. It is okay to have a difficult time dealing with cancer no matter what form it may take. It was enlightening for someone to give me permission to feel bad and to have a difficult time coming to terms with CML even though others may be having a much worse trek than I.

In addition to this revelation I took the quote that named this post from one individual at the meeting. People with cancer - any kind - must get used to "a new normal". Things will not be the way they used to be. What used to be "normal" may now be impossible, non-existent, or take a very, very long time to work back to. Psychologically, physically or emotionally, things will be different and the point from which "normal" is measured will have moved.

For me, I think my "new normal" has a lot to do with physical activity and my psychology. Right now, I just can't do all the physical things I used to do. I don't have the stamina, the energy or the strength. Psychologically it means I'll always measure everything I do against how much time I think I may have left. The treatment I'm currently undergoing won't cure my cancer. It will only keep it down. Current data for Gleevec only goes back six years which means I know the odds that I will live at least six years are 95%. Who knows, I may live out a normal lifespan. What I've been having a difficult time with is that no one knows. It's different from knowing that I might get hit by a bus tomorrow and die. There is something inside me actively trying to kill me. It's not a freak occurrence like a bus. It's in me and it's working against me right now.

The "new normal" comment really struck me . I can't help that I'm not the same I used to be. I'll need to physically work my way back up to where I was, and I may never actually get to be the same. I'll think about things differently and may make different choices than I would have before. They'll be normal for me, just a different normal than I've been used to.


Ian said...

So can your form of Leukemia go into complete remission? Janice's doctors have told her that she is cured of the disease. Yes, it could come back but the ratio is the same for her as for anyone now.

Reading your blog tonight brought back so many memories of the past few months. Two bone marrow taps, six weeks in the hospital, hair loss, feeling like shit (loved your cafepress shirts by the way!) and both of us being scared out of our minds. Three young children (7, 4 and 2) running around certainly elevated our stress levels and kept us asking: "why us?"

I am so pleased that you are doing well!


Matt said...

CML can go into remission with Gleevec. It can also be potentially cured with a bone marrow or stem cell transplant. Currently the plan is to stay on Gleevec as long as it keeps working.

I can't imagine going through what you and your wife did with children, but I'm so happy you've come out the other side of your ordeal with a positive outcome.

Anonymous said...

Hello Matt,
My son is also a Matt, is 30 years old and was diagnosed with CML 3 years ago, 19th October 2005. I just wanted to say that he has a beautiful daughter who had her first birthday on the 2nd October. She is a glevec baby and is absolutely perfect! I wish you all the very best.

Mountain Mama said...

Hi Matt,
I love your blog. My CML 'badge' number 10/18/2008. Still trying to grasp the facts and stuff, but reading yours gave me a bit of light on what's ahead me. BTW - I would love to have that app for the blood statistic.