Adventures with Hodgkin's

I've finally figured out he purpose of seeing the doctor every week. And it's not what my cynical side says (revenue generation). While waiting for my doctor, I overheard another speaking to a patient on an initial visit. She said that these weekly doctor visits are social in nature. No kidding! Mine certainly weren't medical in nature. I was not given a physical exam until I asked for one. In medical oncology they go after the nodes every week to let you know how it's going. They shared a lot more information with me about my progress, without my asking. So I asked the radiation oncologist early on why there were no physical exams and he said I could have one if I wanted. THAT'S NOT THE POINT, I wanted to scream. (Oh, and don't get me started about he secondary infection I developed because the doctors kept their distance either. Maybe that's why I'm so irritated with the whole thing.) Anyway, I managed to not raise my voice, and asked instead how I was progressing, cancer-wise. He said we won't know that until 6 to 8 weeks after treatment ends, when I have the combination CT/PET scan. (Stanford has that new machine, which makes things easier.) But the point of all these treatments is to make me better. He acts like his job is to radiate me, and I think his job is to get rid of my cancer. He's into the means, and I'm into the end. And, damnit, I want it to work this time!

I feel they were cavalier about my radiation after chemotherapy, and I can't help but think that's why I'm back again. I was supposed (according to the medical oncologists) to be radiated in the left armpit the first time, but wasn't because nodes weren't big enough--there's some sort of cutoff. Radiation oncology thought I didn't need it. But my nodes never swelled in the first place, except for one under the left arm. The one that they removed during surgery was normal sized and tested positive for Hodgkin's. If size is the only measure--eeek!

I personally believe that this round of radiation is affecting my brain. Not just the forgetfulness, but paint color choices. Usually I'm pretty good, and either I blame the fluorescent paint now gracing the walls of the 'dressing room' or the formerly yellow kitchen on radiation, or I admit that I can't handle picking four different room colors at once.

Last week when I was waiting to see the resident I had the (mis) fortune of perusing a copy of Details magazine. I could not resist after spotting the headline--"Are Your Breasts Bigger Than Hers?". That headline is awesome--it preys on men's paranoia and denigrates women--all in 72 point type! The resident came in as I was flipping through it, and I commended he and his sex on acquiring a magazine that will do as much for them as Cosmopolitan has done for women.

I've decided to spend the time with the resident asking stupid questions. Yes, I know there supposedly are no stupid questions, but there are questions that you ask that the doctor gives you the sigh-and-stock-answer. Residents, on the other hand, aren't so lucky. They get paranoid if they don't know the answer (which they usually don't to off-the-wall questions) so they either have to admit they don't know (and then go find out, which is the part I love imagining--them asking the doctor about bovine colostrum!) or they try to get all professional and say, "Well, in my experience...". Either way, it's amusing. So here's what I found out this week. First, radiation is generated by taking electrons from the wall current and shooting them into a metal plate, and either the bits that shoot off or the bits that are left are radiation. In the past they used live samples, which is like blowing air over plutonium onto you. (No wonder those X-ray shoe measuring devices were so toxic!) Second, I can't donate organs. Third, I can't donate blood (apparently 'have you had cancer' is one of the more mundane questions they ask when you donate blood, buried between eating beef in Britian or having sex for money).

I believe I have mastered the ability to turn sympathy for a major illness into completed home remodeling tasks. I should write a little pamphlet on this for the oncology center. It would point out that any time someone says, "If there's anything I can do...", you jump in with a few preliminary questions (Can you drywall? Paint? Have your own power tools?), and then assign a task. Yes, you say confidently, there is something you can do. We hate the color of the kitchen and would like it changed. It will take you about 6 hours--when can you start? Saying it from your sickbed is most effective ("Paint.....my.....gasp.....kitchen"), but makes it rather difficult to continually check their work.

And speaking of turning misery to your advantage (make lemonade when life hands you lemons!), I played the cancer card rather extensively today at a preschool tour. We have put off and put off and put off finding a preschool for Conor, but he says he's going to school soon and I feel bad responding with, "Not until you apply to one you won't!" San Francisco, like many other cities I imagine, can be cutthroat when it comes to schools. But there is one in the neighborhood we really like, so I called them up and found that although I was two months late submitting an application, they'd still let me. (My, how times have changed since that internet bubble burst!) I did play up the cancer card, stopping short of invoking Georgia's Make-A-Wish requests, during my groveling for a tour. During the tour I tried to stay on this side of shameless, though, but I'm not sure how successful I was. I only mentioned it once, to the director of the school, when I mentioned that I'd met him at a preschool open house in October. He wondered why I hadn't applied then, and I got to play the cancer card. After the tour another mom pointed out that there are many reasons why people apply late, as if her impending move to the area (and two hour drive in for the tour) carried any weight.

There was a man whose progress I was watching as I got my first round of radiation. He was talking to my mom one day, early in my first cycle, and so we found out he had a tumor in his tongue/jaw and was going through chemo and radiation at the same time. He was a big guy, about 40 or 50, with close-cropped white hair. He was very friendly and talkative, and I'd usually say hello or nod when I saw him. (Because I usually get there right about or after treatment time, I'm told by my techs as I come in to get changed and come down rather than sitting in the waiting room waiting for them to come get me.) For the first two weeks he was looking pretty good, and then things changed. He came in one day, shuffling and holding his jaw. It was quite swollen and obviously painful. He barely responded to the nurses when the talked to him. Two days later he was wheeled in, in a wheelchair, and looked awful. It was really terrible to see him like that. I didn't see him again until the next week, and I was happily surprised to see him walking in, albeit slowly, and talking to everyone. I stopped him and told him it was great to see him up and around and realized by his blank look that he had no idea who I was. I remember that happening to me once, in medical oncology, and I felt like I'd come full circle.

Here's a little something I forgot to put in here. Or at least I think I did. I haven't been as prolific as some bloggers who need to Google their own site to see if they're repeating themselves, but with my dimmed memory capability, I wouldn't put it past me. Anyway, I'm still playing softball, or as much as the San Francisco winter weather will let us (we get rained out a lot, even though it doesn't seem to rain on any other day except softball day.) I ran into a former teammate at one game, a 20-something quite handsome man, and he asked how I was doing. I said fine. (That's what I say to everyone, I decided it's just easier.) He asked again, so I told him. And we had a nice conversation about it and I left that game feeling all warm and fuzzy that someone took the time to really talk to me and he was good-looking to boot. On my way to the parking lot, another guy asked me a medical question. Now, I should preface this by saying that I'm one of the oldest people on the team, and the only one married and the only one with a child. So this guy asks, "Hey, Georgia, you're older than us, what's a root canal like?" He's lucky I'm the kinder, gentler, Georgia.

It takes two or three techs to get me all lined up for treatment (or one who runs around and around the table) and now that my head isn't tipped up I can see what they're doing. Yesterday there were two and when they got everything ready for treatment, they looked at each other across by stomach and vigorously nodded once at each other. It was the weirdest visual--I kept expecting to hear, "Wonder Twin Powers, ACTIVATE!"

Sometimes it takes a while, especially if they're doing X-rays, too, and I'll be laying in there all by myself and I'll forget why I'm laying there and when the buzzer starts I panic a bit until I remember what I'm supposed to be doing, which is laying there not moving.

Today one of the techs made me laugh between front and back treatments. We talk about restaurants in my neighborhood since she lives near me, and she said that her father called my favorite burrito place, El Faro, El Farto. I almost fell off the table and they had to line me all up again.

We've returned from my radiation break--I had 10 days off and I took advantage of an offer to use some friends' house in the mountains and my parent's willingness to take care of me and Conor to have a little vacation.

The first thing I did after my last treatment was rip off all the little crosshair stickers they had stuck on me because they certainly weren't going to last the whole ten days. So when I went back in I was chided for not keeping them (this from the same person who mocks me my re-marking efforts) and then they proceeded to re-mark me and add marking for the areas to be radiated. Mostly it's my spleen and the lymph nodes in the belly. Oh, and they take a picture of the whole thing, so I now have three or four topless and headless photos in my file.

On Friday our contractor (did I mention we're remodeling the house? Oh, yes, we're remodeling. A nice, quiet, stable activity.) took Conor and I to the dump. Conor was entranced, and I was only too happy to have the diversion. I can keep it together and retain some semblance of normalcy as long as I have something to do, unfortunately, I generally can't think of something to do. So we got to go to the dump, Home Depot, and Target. Something for everyone.

And I'm trying to get the money from my medical care reimbursement account, but it turns out you can't be reimbursed for medical expenses incurred while on a medical leave of absence. And I thought insurance companies had a sense of humor.

My hair is still falling out in the back, and it makes me wonder how much I'll have left. It hurts before it falls out, too, just to add injury to insult.

Wednesday was my last mantle radiation; I'm on hiatus until the 17th, when the second round of 20 sessions starts. I really need the break--at times I feel like a wimp because I'm just so beat, but then it turns out that not only do I have cancer, I have an ear infection. Probably had it the whole time, the doctor says, it probably took advantage of the side effects to ingratiate itself. No shit, say I. I knew I couldn't be feeling this bad just from the radiation, and the condescending looks I got from the doctors the first few times I reported symptoms of it just made me keep my mouth shut. Martyrdom leads to suffering, I suppose, in a self-fulfilling cycle.

So after my last radiation I asked the tech's when my appointment was on the 17th. They told me that my next appointment was the next day, and I said no, I have a week off. "We'll have to check with the doctor", I was told, even though it was written in my chart. Part of me was affronted--I mean, who would lie about that? Then I realized lots of people probably do.

I was reading the Sunday paper and there was an article about anorexics and I was thinking how twisted that whole thing was and how glad I was that I now had a realistic body image, and then I started eagerly wondering how much weight I'd lose during this treatment cycle. Some things never change.

I actually responded to the posting about detecting cancer via a pregnancy test with the information my doctor gave me--namely, that you can't detect Hodgkin's that way. And in true Internet fashion (refuting the facts with anecdotes or somewhat related but irrelevant information), I recieved a response on the list:

Please reconsider:
On the Cause of Birth and Its Relation to Cancer Regression by Roger S. Cathey
"Abstract: Cancer has long been recognized to share histological and behavioral characteristics with pregnancy trophoblasts. Modern methods
have proven biochemical and genetic characteristics are shared between cancer and pregnancy trophoblasts. Cellular or cytotrophoblasts are the
source cells for the entire placenta and are the first differentiated tissue that forms after sperm and egg unite to form the zygote. Cellular
trophoblasts are invasive, eroding, and metastasizing cells, which mediate the parasitization of the mother's uterus with a new life form
which grows concomittantly and distinctly alongside the placental process. blah blah blah blah blah"
More recent article (1994) by Ralph Moss: www.ralphmoss.com/html/troph.shtml

Grace Cross
*Amygdalin (Vitamin B17): Nature's Perfect Cancer Cure*
www.theroadlesstravelledby.com



How do I respond to this? "Please reconsider?" Give me a break. I think the tag line says it all.

// posted by Georgia @ 10:19 AM  

Today I saw three doctors--all at once. We did the math and figured that I have two treatments left. They asked about side effects, and I said nothing that I couldn't handle for a couple of days. And then we agreed that I'd get a break, and we'd start the next round on St. Patrick's Day. I've got to get a shamrock tattoo somewhere to surprise my techs.

I also argued with my insurance company this morning. I've discovered that if you are not rude to them, they cannot hang up on you. I was asking why they wouldn't cover a test I had done this year (PET Scan) that I had done twice last year. It was a conversation to confound even the most zen of practictioners.

Me: Why isn't this fully covered?
Them: There is a difference.
Me: What is the difference?
Them: I don't know.
Me: Who does know?
Them: Someone must have authorization.
Me: Who has authorization?
Them: If you don't know, I can't tell you.

I'm sure many of you find it hard to believe I can have a 20 minute phone call like this without swearing profusely. But I can, because it pays off. The end result was 10 minutes in the penalty box (on hold, hearing about how much they care about quality customer service) before being told that yes, it is covered fully. Except they're sending the money to ME, and I have to pay them. They always manage to stick it to you somehow.