Hi Sandy. I just read your post. I really appreciate your honest questions and comments. I remember feeling the same way but not expressing it much - except to a couple folks like Beth and my Dad. hymmm....where to start?....
First of all, to address your first question, from what I've read, most leukemia patients survive. There are obviously many factors involved so exact percentages are tough but - to me - that is the important part - most survive. I remember being frustrated by the, at times, vague comments of my doctors as well. But I realize now that they really don't know exactly how any 1 person will respond so they keep it positive, but vague, because they probably believe that STAYING POSITIVE is one of these factors - and I believe they are right. Just KNOW that you are going to get better as you roll with the punches. If it helps, look at it like a competition - something to win. Visualize how good things will be after you make it through this tough period - and you are already through the really tough part! It'll much easier from here on out. You are at the "go on long long walks" stage. You get to explore your neighborhood. What fun! It's all about slowly regaining your strength now. It took me about 6 months and now 10 months out - I'm still not 100%. But that's coming.....With 2 years of maintenance therapy ahead we will have to be patient. You will be feeling better and better every day.
What you're feeling in normal so try not to worry about these feelings too much. It's ok to be sad sometimes. When I was really sad, here's some things I did that really helped:
- Try to find a close friend or 2 and really lean on when you are down. Just talking to, venting on,and crying with my "rocks" or "stabilizers" really helped me stay positive. And all the extended support and positive comments of friends out of town is big, too. Starting a blog or website helps with that. and you get your feelings out and expressed. you already have a vox site....
- Walking, I've said, really helped. especially with friends. Ask your friends to come visit and take a walk. It gives them a way help and gives you access to their love and energy. and it gets you out of the house and in the sun. I remember feeling very weak and tired at the start of maintenance. Walking to a park with a friend or 2 really cheered me up. And the released endorphins are good too. Sometimes I threw a frisbee - I'm a bit biased towards this activity... My doctor gave me the ok to start running, without exhaustion or fatique, around this time. So I did - first a block or 2, than a few blocks, then a mile after a month or so. I strongly endorse walking/running at times of stress but, really, it's any heart pumping activity that "stirs up" the positive endorphins.
- watch videos/shows that entertain you or make you laugh. Leukemia is a great excuse to catch up on tv with no shame! and the distraction is nice when exhausted. Soon after being diagnosed and put in the hospital, and after 2-3 months, when the exhaustion and malaise really started setting in, I watched a lot of stuff. I highly recommend: Scrubs - (savor the irony of your current medical situation!), Curb Your Enthusiasm (acidic cynicism can feel so good!), The Wire (best cop drama ever), The Sopranos (a comedy, really), and 6 Ft Under (this one was a bit heavy for me at times). I will forever associate these shows with being sick.
- Accept and trust in the drugs that are a big part of life for you now. They are proven to work by all the folks surviving cancer now. Obviously the chemo is poison. It'll make you feel bad. 1 month after diagnosis and starting Induction therapy, I began feeling sick and tired and it just got worse from there for 5 months - almost the exact duration of time that really huge doses of chemos were infused and ingested. Even with my bad reaction to aparaginase, which caused all the headaches, the chemotherapy made me sicker than I thought I'd be at the start. I remember feeling confused by the seemingly constant vomiting, hot/cold fluxuations, fevers, extreme fatigue, and headaches particularly when away from the hospital. Prednisone, a steriod, in larger amounts, seemed to enhance the anxiety and made me irritable. When the anxiety was bad I took ativan which also helps nausea and insomnia - a problem when I stress. I also ate THC, marijuana, edibles. I took painkillers for the headaches. When the time came to cease the services of these drugs, even with tapering, I had a rough few days. But I do believe they helped get me through a difficult period (sorry, Tom Cruise). Obviously, the amount of painkillers/antianxiety drugs to take along the way is a very personal decision - I had a friend your age with ALL whose father was very much against it. I disagreed. I just believe it's healthier to not have to suffer as much with the many side-effects of our required poisons. It was around the start of maintenance that I began tapering away from most of these drugs.
- seek out and enjoy the success stories. The best one I remember was of a 60 yead old Japanese American gift shop owner who lives in my neighborhood. He was diagnosed in the 1970's, when leukemia success was rare. He's looking very healthy at 60. He kept saying "don't do sport," which confused me at the time so I had to go back and ask him about it. no more sports ever again!? He elaborated saying he meant during the chemotherapy - when you need your strength to fight the cancer. This goes with the don't exhaust yourself advice of my doctors. I also met an 80 year old woman with leukemia who said when she was diagnosed she was given only a few days to live and that was 4 years ago! She is still progressing well. There are so many stories like this. This is another reason doctors are vague - they simply don't know how people will react to the process. So they stay vague and positive. I do think they could communicate a bit more along the way particularly when I'm feeling really sick. and having an information hotline with better advice than "go to the hospital" would help.
- Lastly, philosophically, being sick is an early chance to address the whole death and dying thing. It can't be avoided and everyone must make make their peace with it eventually. We just have the opportunity to do it a little earlier than we expected. And the obvious conclusion is smiling and enjoying every day you can. and learning to enjoy life with out being sure of the future. Cancer, for me, is living with uncertainty and feeling ok about it. I realize it can be taken further, but without getting into religious views, this is where I'm at.
I hope I've been of a little help to you, Sandy. and any other new or experienced patients reading this. Feel free to ask further questions. I had many along the way. I'll be around if you need to talk. take care of yourself and stay positive! You're doing just fine! I'll be thinking about you.
to my regular readers, looking for an update: briefly, I've had a great trip working tennis and playing in Europe and China. I was sick with the flu in Madrid but made it thru the tennis whilst hacking quite a bit. In Paris, I had 24 hrs of extreme fatigue but I made it thru that as well. Again, living with a bit of uncertainty. In China, I was able to see Shanghai, Suzou and Lijiang - the 2 later both considered "Venices of Asia" for their extensive canals and bridges. I saw Leaping Tiger Gorge, the First Bend of the Yangtze River, and 1000 Tortoise Mountain, all near Lijiang in the lovely Yunnan Province. I will write more about these experiences in a future entry. For now, I'm off to the Rijksmuseum as I impulsively stopped off in Amsterdam on the way home because, well, it's Amsterdam! Museums, canals, beautiful Scandinavian rationality, blessed liberalism, flowers, Boom Chicago, restaurants, and, oh yeah, um, coffee shops, I guess they are here as well. I'll have to check one of those out... :)
much love to all. talk to you soon. I will be picking back up in July at some point soon. I have had many blog uploading problems on this trip. Holland will come thru for me though. some photos....
My tennis friends are calling me "Mitch" because of my hair ...not nice... from some show with P. Anderson...
