From a conversation I had at work today.

[gridlore]

All of you probably know I'm a cancer survivor. I was amazed to find out how little most people know about this family of diseases and the effects on both patients and those around them.

So, ask me anything. Seriously. Medical, emotional, nasty details about diagnosis, surgery, chemotherapy, recovery.. whatever. I'll answer as completely and accurately as possible.

For the record I had Stage IV-B Hodgkin's Disease. My early treatment and diagnosis is discussed in this article. (A few errors in the details, but it is amusing to see myself described as a "thin, pleasant, well-developed man."

Comments

[figmo.livejournal.com]

I was around when you were going through that hospital stuff and treatment, but I'll ask a few anyway:

1. Do you feel any different now that you're in remission? I ask because Mom described having cancer as "feeling like something's wrong, but you can't quite put your finger on what," and she's felt different since her cancer was removed. Dad also had the "something's wrong" feeling and it never went away.

2. What kinds of side effects do you feel from all the treatments you've been through? I ask this because my mother, a friend, and the husband of a former co-worker have all had some kind of internal scarring that manifested itself years after their treatments.

3. Were there people who acted different around you after the cancer diagnosis?

[gridlore.livejournal.com]

1. Since I had such a long recovery process (almost ten years) with multiple setbacks and problems, I never really had that "I'm in remission" moment. Once i got back to driving for a living, the feeling of being alive again was nearly overpowering.

My reaction to the cancer would hit me at odd times.. I'd get out of the shower and see myself in the mirror and not see my body, but rather the thing that had turned on me and was trying to kill me.

2. As a result of the chemo and long-term use of uncessary anti-seizure meds, I have a terrible memory, espeically for names. I'm also losing my teeth. Having lost my spleen as well as the general hit form HD and chemo, I was extremely vulnerable to disease for several years.

3. Well, my father treated me like a son instead of a rival. My illness was the start of our reconcilliation. I could tell that some people were walking on glass around me, not sure of how to deal with me and the reality of my possible demise. Most folks were great, including a certain trio of filkers who gave me a really, really sick tape...

[mdlbear]

Fascinating article -- it's always interesting to see some other field's technical reports.

No questions, given my family and Colleen's.

[vayacondia.livejournal.com]

Wow. I bet that was a pleasant 10 days for you, huh? "Uhhhh we dunno wot's rong, u cud have AIDZ [but we already got a negative HIV test] or like, uhhh, bird flu, or, uhhhh, lupus....

The patient was subjected to ten days of hospitalization and a large battery of diagnostic tests and procedures and ten days of hospitalization, at no small cost to the patient's comfort. . . ."

Yeah, my thoughts exactly. I'm not a doctor, but, um, doesn't a messed up CBC immediately alert a medical professional to a potential 1) infection or 2) cancer?!

[gridlore.livejournal.com]

The best part came when I started getting the "you might have AIDS" lecture for the fourth time that week. I don't blame them.. "he's bi, was screwing foreign hookers in the mid-80s, and has multiple partners? AIDS."

I gave enough blood (and spinal fluid, and other fluids) for all the normal infection panels. Problem was HD is damn hard to find. Had I come down with non-Hodgkins lymphoma, I would have lit up the tests like an atomic bomb. Even after a biopsy of an inflamed lymph node (I was awake for that surgery - really neat!)it took the removal and examination of my spleen to find the cancer cells.

That's the tricky thing about Hodgkins. Fairly easy to treat, but very hard to detect.

[kshandra]

And that was just the first hospital stay. It was a total of six weeks before we actually got the diagnosis.

[collie13.livejournal.com]

My mom just completed radiation treatment for breast cancer two months ago, and we think she's clean -- much to our relief. I have a slightly greater appreciation now for what this disease entails, and congratulations to you for doing so well. I do have two questions, if I may, though. One, what's a tonic-clonic seizure? And two: a fifteen-year history of headaches?! Holy cow, guy! Did you not realize this wasn't normal?

[gridlore.livejournal.com]

tonic-clonic is the technical term for a grand mal seizure: Doug fall down, go twitch.

I thought I just had migraines. They didn't happen often, and only lasted for a few hours. Add in two facotrs, and you can see why I ignored all the warning signs that something was wrong. First of all, I've always been ridiculously healthy. Never severely ill, no broken bones. The worst I ever went through was having a Plantar Wart removed from my foot. So I wasn't conditioned to think of going to the doctor. Add to that my family's second motto is "leave it alone, it will go away." I was used to toughing out illnesses.

[collie13.livejournal.com]

Oh! Okay, I get it now -- I thought they were talking about you having headaches almost constantly. Yes, I understand that mentality -- been there, pretty much live that. Yes, that is present tense. ;)

[dafydd.livejournal.com]

1) lower extremity ecchymosis over the preceding eight months whenever he traumatized his lower extremities with suitcases;

I don't know why I find that hilarious, but I do! I know it's possible to bruise excessively because of whacks with suitcases, but that's not the way this is worded...

[gridlore.livejournal.com]

Yeah, it makes it sound like I either had a really odd fetish ("now the Samsonite! Oh, yes!!!") or my lower extremities had deep-seated issues with luggage that they were dealing with in group therapy.

[lisa-marli.livejournal.com]

Well, I pretty much figured you had gone through HEdoubleL, and looked worse. But we're glad we still have you to raz and really enjoy that you're still around.
See you at the parties and the cons.
Big Harold loses his colon in December because of dysplasia that would become colon cancer if they don't remove the colon first. You know that surgery beats chemo any day. Meanwhile, his colon is giving him HEdoubleL. But he's considered a low priority surgery so we wait. I can't wait to get my husband back.
*hugs*

[shadowcat48li.livejournal.com]

just as an aside, one of my oldest and best friends who was told he had terminal leukemia in 92, and went on to survive a total of 4 bone marrow transplants after being given less than 6 months to live initially

he has passed his bar exam and will be sworn in as a lawyer this morning!!!!

I know its not quite cancer, but
FUCK LEUKEMIA and CANCER BOTH!!!!

[fusijui.livejournal.com]

So, in that spirit of education, can you tell us what exactly Li meant by "well-developed", eh?

A slow-burning episode of recurrent malaria, in my case, got me that same 'hey, it must be AIDS!' diagnosis in the early '90s. Admittedly malaria isn't the first thing university health clinic nurses in Michigan are going to think of. But apparently they did it a lot, and someone brought a class-action suit against them and the corner-cutting commercial lab they were relying on, which was settled quietly, and I ended up getting a little money out of it!

[gridlore.livejournal.com]

I'm really hoping he was refering to my having the usual compliment of limbs, organs, etc, and being in fairly good shape.

But the man did see me naked on several occasions...

[fusijui.livejournal.com]

BTW, did I ever tell you about the research protocol for a clinical trial of a new cancer treatment, that due to a misused spellchecker back in final editing, kept talking about their "nonmyeloablative conditioning regiment"?

Could the next edition of G:T Ground Forces tell us more about this fascinating fighting force, you think?

[gridlore.livejournal.com]

Obviously a training unit. The 383rd Nonmyeloablative Conditioning Regiment (Unified Army of Lymph) specilizies in training human recruits to deal with Sayat military organizations, one of the more hazardous specilties in Imperial service.