Why is there a LymphomaJournal.com?

I have a problem with cancer sites on the internet. There are so many sites that give cold clinical descriptions of the situation I'm in that I found myself with more questions than answers. I wanted people, pictures, diagrams, and metaphors I could relate to. What I got was a bunch of acroynms. Thus I have set out to make a more warm, human spot on the internet, somewhere where the environment is not sterile, hope is not fake, and love is not restrained.

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.

Disclaimer 1
I wrote most of my group emails in order to terrify my friends and family (people without cancer). I needed some company with my misery, so I wrote about the gruesome details without restraint. To a newly diagnosed cancer patient some entries may be disturbing. Thus keep in mind, Disclaimer 2, Disclaimer 3, Disclaimer 4, and Disclaimer 5:

Disclaimer 2
No two cancers, no two treatments, and no two people are alike! What I went through will probably have more differences than similarities to anyone else's treatment. To find out exactly what happens to you, well, you'll just have to wait, be confident that you can handle it, and see what happens with each moment, like I do to this day.

Disclaimer 3
I am confident in my doctors and western medicine. Without the medical attention I have received, I definitely would not be around to ski and surf today. I really like life, and one of the main reasons I'm once again living it is thanks to my docs. Seek solid medical attention, and look to the positive outcome.

Disclaimer 4
I am not a trained cancer know it all. And I wouldn't trust ANYONE who said they were without doing my own research. Hopefully what I have to say will be informative, idea-inspiring and eventually, comforting. I cannot emphasize enough the importance of doing your own research and supporting your own cause. DO IT!

Disclaimer 5
Humor helps, no matter how twisted it may seem. When you can share that humor with someone else, the world becomes a better place. Let's all laugh together, it's much better than being fearful or bitter.

Me at the helm, 1/22/01

About My Cancer and I

Before treatment my life was in a state of rapid deterioration, miserable. I had severe pain, fatigue, night sweats, facial swelling, puffed up veins, and a horrible knowledge that something was very wrong without anything to prove it. I had given up sports, exercise, and stopped taking on new projects for work. I would spend hours surfing the net for a possible diagnosis. Sorting through the information was no easy task. Disease descriptions on the internet are like horoscopes or astrology: they're written so that you can convince yourself that anything applies to you. Never did I consider cancer to be a possibility. That could never happen to me.

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

Confronted by new handicaps and the possibility of a shortened life, I started asking myself how to squeeze the most out of the life I still had left. Take out a bunch of student loans? Ring up my credit card beyond all hope of repayment? Sell everything I own and go travel around the world, ending in Tahiti? Wait for the "good health" to return to really start living it up? Though these ideas helped cheer me up, I quickly realized that they are a quick fix for a much bigger problem. What has helped me most during the trying times was to learn acceptance, and how to live for the moment. I tried to make sure that I was always relaxed, breathing deeply and slowly, and that my mind stayed focused. To think of the future was way to overwhelming so I often found myself chanting, "one day at a time" to reel me back to relaxation. It's sobering, but it works.

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
Everyone's different when it comes to pain relief and what's best for them. For what it's worth, I thought it would be good to mention how I handled medications through my treatment.

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:
I don't like pain. If I was in pain, I took something. If I was still in pain, I took more. If I thought I needed it, I took it. As soon as pain was going away, I stopped taking meds, or decreased the dosage. Split pills if you need to. I had to be very honest with myself, always remembering my goal of taking as little as possible, but never allowing my self to "tough it out".

Most Importantly
I never developed a routine with narcotics. Taking them was always a decision making process. This is what helped me get off of them as quickly as I got on to them, and prevented me from developing habitual use.

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.
There is no conclusive word on the use of marijuana for cancer patients.
For some non-conclusive reason, a large non-conclusive amount of cancer patients turn to it's non-conclusive use.
Some use marijuana to treat the nausea or a supressed appetite that may result from chemotherapy.
Some use marijuana to help with tumor or other cancer related pain.
Using a water bong will decrease the irritating effect of the smoke on your lungs.
To prevent respirating possible fungus from the marijuana, you may first bake it in an oven.
THC is quickly and efficiently absorbed through your lungs (marinol pills require longer to work, require a higher dose, and cost more)
It is possible to smoke just enough to get an appetite and to feel better. You don't have to get "high".
The more immuno-compromised you are, the more risks you are taking using marijuana. For example: Allogenic Transplant patients definitely should not smoke marijuana during treatment.
Read how clinical trials on marijuana use were actually conducted before you accept their conclusions, you may be suprised by how the data was gathered.
Marijuana use may cause cancer, along with chemotherapy, radiation, smog, sunlight and sitting to close to the TV.
For fun: imagine yourself at the podium, pale, hairless, and sickingly thin, defending your choice of therapy!

The final word
Do what works for you.

About Pinki

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"

Also known as "The Speed Pilot Powder Hound Miss Kuma Wing-Nut Sniffalot"

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...