I want to help people with cancer. It's a terrifying time. The future is unimaginable, filled with questions. I for one felt very alone. I felt (very wrongly) like the youngest person alive with cancer. I knew nothing at all about the real treatment of it. Most of my initial learnings came from National Cancer Institute booklets. Most of the things I read I immediately wished that I hadn't. But over time I realized that that knowledge was indispensable. The more I learned and heard from peer survivors, the better I felt. Much better. And because of my learnings, as time has continually presented new challenges, I have been all the better equipped.
About My Cancer and I
Only after I became jaundiced (I turned yellow) did I get the medical attention I deserved. Within days I was diagnosed with Non-Hodgkins Lymphoma. That was August 29th, 2000. B-Cell mediastinal lymphoma with sclerosis, to be more specific. I had a tumor the size of two large fists struggling for space in my chest, and another smaller one in my abdomen. No one seemed to make a solid stand of whether I was stage III or IV, but both have been indicated. I had a symphony of B symptoms such as superior vena cava syndrome, pericardial effusion, neck, back and abdominal pain, night sweats, lightheadedness, nausea, veins that stood out as if I were in a muscle magazine, and of course, jaundice.
By the books, I have a 30 to 50% chance of making it the next 5 years. According to my doctor, as well as my parents, I am a rare case. Always knew I was special. To see a detailed description of the position I'm in, check out this retrospective analysis of 35 patients with conditions similar to mine at :http://www.bloodjournal
Now I'm 30 years old. Just finished the dreaded high-dose chemotherapy and autologous stem cell rescue.When it comes to my survival, I'm just as much in the dark today as I was ten months ago. My life is still the shambles, but I have returned to being able to do many of the things in life I love most. I have been exercising, entertaining and am slowly getting back to doing the little things in life that everyone with good health takes for granted. I'm waiting for my hair to come back. Any day now.
Oh, yeah.... My name is James, but you can call me Jamie.
Advice to Myself
Here are a couple other things I've found that help
me through the rough spots:
Pamper yourself: Seek out total escape when necessary, and more often than you think: Movies were my best escape. For the most part I didn't even have the energy to read. I also learned how to find deep relaxation and enjoyment in hot, candle light baths. As time went on, I sought more involved activities, like reading, drawing, and computing. Without escape, I would have lost my mind. Learn the point at which you need escape, and learn to take it when you need it.
Be thankful:There were times I could barely walk or move. I was miserable, but I've always felt that life beats the alternative.
Stop: I've learned to just suddenly stop what I'm doing and just be. There is always so much going on around us that we usually just tune out and ignore. Cancer slowed me down to a point that I began to notice these things, and I liked what I noticed. As I get better, life almost automatically returns to normal. I begin to miss out on noticing these special things. I get caught up in the busy routine of life once again. That's fine too.
Challenge: Walking a block doesn't seem like a challenge, but for me it was. Going beyond a block felt like an artic expedition: I didn't know if I'd make it back alive! I had to hugely reduce expectations of myself. By setting realistic, small goals I kept myself striving and experiencing success.
Accept help: I learned how to let people help me. A simple sounding skill, but one I truly did not understand. Being too proud to ask for help will just get you dead, all by yourself.
Here are a couple more issues that are bound to come up:
Longevity and the future: Even though I keep looking for it, life doesn't come equipped with a fast forward button on it. When my challenges with cancer were at their hardest, I lived entirely for the present, enjoying each moment, each breath, and each sensation because I was still alive and able to do so. As my challenges became fewer, I would slowly switch back into planning for the future and living my life more like normal. So far I've gone from living in the moment to planning for the future and back to living for the moment again.
"Why Me?": Don't kid yourself and think, "this can't happen to me" because it can. My doctors initially told me, "if you have to have cancer, lymphoma is the one to have." Someone must have read the order wrong because I never asked to have any cancer at all.... No one deserves this, but no one is excluded from the savage randomness of it.
About "What If"s: "What if I had started chemo a month earlier?" Questions like this do nothing to enhance my quality of life, and I let others know it. Besides, where do you file an official complaint about life? What would you do once you got your "money" back?
Remember: Doctors, family and friends are there to help you, but only you know what your body is trying to tell you. Listen well and always look out for yourself.
About Narcotics and Addiction
Narcotic: A habit forming drug that dulls the senses, relieves pain, and induces sleep. (Webster's Dictionary)
About taking pills from your doctor
First off, I very much dislike taking any kind of pill or medication what so ever. I believe that everyone is best off monitoring their health through how they exercise, what they eat, how they handle stress, and how they live their lives in general rather than by what pill they ingest.
That being said, I know there are times when help from medicines becomes mandatory (ie. Lymphoma!). But my number one goal was always to return to a state of as few of meds as possible, as soon as possible.
Okay, that's what I believe. Here's what I did:
About Marijuana Use
Early in my treatment period, I had two email buddies who were lymphoma survivors my age. When I started feeling frequent nausea and lost my appetie, I sent them both an email asking how they handled the queasyness.
The first one wrote back saying something like this: Oh, it was awful. I did everything my doctors said but I was sick all the time. I never felt like eating. I was always throwing up. My doctors didn't know what to do with me, even after I had tried just about everything.
My second email buddy wrote back with this advice: Well, I never had a problem. I used marijuana. It always gave me an appetite. In fact, I laughed and giggled through a large portion of my treatment.
Here's some Marijuana
facts and advice for cancer patients.
The final word
One day I decided I needed a mascot. Something that represented how I felt about myself during multiple stages of treatment. Hairless, naked, vunerable, inhuman, and pink. I found Pinki while surfing the internet and immeadeatly fell in love with his plasticy smooth skin, sturdy smile, and general sence of well being. He's been with me ever since, at least in my virtual adventures, he's gone through the all same challenges as I have.
While surfing my site, pinki can usually be used to navigate back to the previous page. He also appears in some pretty unlikely places so keep your eyes open for him. "Thanks, Pinki!"
About "The Sniffer"
We rescued Kuma from unknown circumstances when she was one year old. She's a beautiful mix of Labrador and Vizla, which means she's very stong and packs an inconcieveable endurance. Her favorite pasttimes are snuggling, sunbathing, and logging at least 15 miles a day. She has been an incredible asset to my recovery, truely my best friend and companion. If only there was a steak big enough to reward her...