Submitted by TLHines on Thu, 06/14/2007 - 01:54.
Oddly enough, I can condense this whole thing down to three words: I have lymphoma.
But if you know me, you know three words will never do when I can write a million. Hence, this big old mess. I'll be posting day-to-day thoughts as I go through it all.
I do realize, however, that three-word summary can seem scary. It's certainly scary to me. Well, less scary every day as I get up close and personal with this thing, but I know how you feel. I was there not so very long ago. So you might have questions.
• What is Lymphoma?
Lymphoma is a cancer of the lymphocyte blood cells--present in the lymph nodes, spleen and bone marrow, for the most part. Cliff Clavin Fun Fact: There are about 30 different kinds of lymphoma, give or take a few. A very few of these are Hodgkins Lymphoma. (Or, for those who prefer: Hodgkins Disease.) The rest (roughly two dozen) are creatively called Non-Hodgkins Lymphomas. (Oddly enough, it's okay to say "Hodgkins Disease," but no one ever says "Non-Hodgkins Disease.") I'm a Non-Hodger: I have Grade I Follicular Lymphoma.
• Um, so what is Follicular Lymphoma?
You probably don't really want to know unless you have it. But a great resource for all things lymphoma is lymphomation.org.
• Can I find out more about it on Google?
For the love of God, do not search for "lymphoma" on Google. The search results will scare you more than the disease itself. I speak from experience; if anything about this whole disease has taken years off my life, it's reading through some of the search results for "lymphoma survival."
• Are you in some kind of treatment?
I received a treatment called radioimmunotherapy (specifically Bexxar) in late October of 2007. Find out more about it here. As of January 2nd, 2008, I am officially cancer-free and in remission, based on clean PET scans, which makes me want to kiss the makers of Bexxar. Well, kinda; that would mean kissing a lot of men, and I'm definitely hetero. But nevertheless, that gives you an idea of my feelings.
• But are you going to be okay, Tony? I mean, you're not going to die tomorrow, are you?
Well, I've probably never been okay. And that, in itself, is okay. As far as survival (once again, do not search Google), I'll be around a good long time. I'm planning to be here another 40 years or so. Yeah, 40 years would be good. The particular kind of Non-Hodgkins Lymphoma I have is very slow-moving, and can take several years to cause problems. A significant number of people live 10, 20 or more years with this disease. I'm all for being a significant number of people. And we're seeing more and more treatment breakthroughs all the time.
• You talk a lot about your oncologists and medical personnel. Why don't you say their names?
Well, because this is my blog, where I'm baring my feelings--saying the names of other people wouldn't feel right. However, I would also caution you, when I write about "my oncologist," I could be referring to at least four different people, because I've seen four different oncologists. (UPDATE: I've now seen five--count 'em five--oncologists; details here.) So if it seems like I'm really schizophrenic in the way I'm talking about "my oncologist," it's probably because I'm referring to different people. If you are looking for an oncologist in Billings, Montana or a lymphoma specialist in the region, I'm happy to share my experiences privately. Just email me, and I'll give you the names of some people who have truly gone above and beyond for me.
• I notice you have some typos and errors in your entries, Tony. Aren't you supposed to be a writer?
I try to write all the entries in The Lymphoma Files in the heat of the moment, so to speak. When they're done, I won't allow myself to go back and edit them--I want them to stay real and in-the-moment. Editing after the fact would take away some of the rough edge. So, yes, all the entries you see are what happens right after I hit the "submit" button--no fine-tuning after that. On a couple of entries, I have gone back and changed a bit of factual information, but I try to leave everything else pretty much alone--except for this "FAQ" file and the "On Deck" section, of course.
• Since we're talking about writing...are you planning on turning The Lymphoma Files into a book?
No. I write fiction; this nonfiction stuff is too crazy for me. The whole project is more of a way for me to work through my feelings; I naturally do that by writing. At the same time, though, I hope it offers information and encouragement to other folks recently diagnosed with lymphoma or another serious disease--as well as their caregivers. If that's you, let me just say: it really does get better.
Dude... That sucks.
Dude... That sucks. Persevere. While I think you're unique, I'm all for you being "a significant number of people," too.
You are in my prayers Tony.
You are in my prayers Tony.
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