Monday, January 27, 2003

This week is a 'vacation' of a kind--I don't have any treatments until next week and I'm not working. The delay in starting treatments is necessary so they can figure out how to radiate only the bits that need radiating and miss the rest.

I am inspired by Mimi Smartypants to make this Blog breezy and amusing. I'm bound and determined to make my treatment the same, last time I was pathetic, frozen with fear and loathing for the whole process. This time I'll use my denial to craft me a whole new oncology experience. As part of that effort, I've been thinking of ways to amuse myself during radiation, other than staring at the dinged up and bestickered machine. Perhaps I'll add to the marks they'll be putting on me. Little messages, such as:

If you can read this, you're too close (in tiny print) (or large print, for extra chuckles)
Please return to original upright position.
Not to be removed under penalty of law.

Actually, almost any warning will do. At the hardware store last weekend, I picked up a small "WATCH YOUR STEP" sign bccause it made me smile. It's appropos for almost any occasion, even one without a change in ground elevation.

But my effervescent Blog may bit a bit difficult to do, since words still escape me. When younger and wittier (or bristlier?), I spent much time engaged bantering and the words would just tumble out and (mostly) hit their intended mark. My college roommate, Eugenia, joked that it was my job to talk to guys for her, which worked out to me talking to them while they stared at her. (No wonder I like the movie "The Truth About Cats and Dogs".) Now my bantering ability has gone away, and not just from disuse. I have the general idea I want to express, but the perfect word or phrase isn't there. My mind scrabbles to find it, but comes up empy-handed. The first few times it was so surprising I lost my train of thought completeley. Then it was embarassing, and I used another (usually totally inappropriate) term whch usually rendered the whole comment useless. Now I've gotten used to it and when it happens I get that stupid amused look on my face, as if to say 'can you believe it happened again?' Usually I can continue the conversation, somewhat.

Thursday, January 23, 2003

Today I went in for my radiation setup. They do a number of CT scans and mark me up so they can make (reasonably) sure that they're radiating the right areas. They gave me a couple more tiny tattoos, one in my chest an another above my navel. The tattos are just dots, but they're not that visible so they draw crosshairs over them with permanent marker. That way if the marker wears off, it can be drawn right back on. I've been walking around all day with one in the center of my chest, easily visible due to my V-neck shirt.

They had a little trouble deciding on the position I'd be zapped in. They need you to be able to assume the position fairly easily and lie there for a while. And they need the machines to be able to access all the bits to be radiated, so that precludes being comfortable. The issue was where to put my arms. They wanted them above my head, in the same position as last time, (because they're going to try not to zap the same place again), but that puts my neck in the wrong place. There was lots of moving my arms up and down and the first use of the work "akimbo" in a conversation I've heard and the the radiation oncologist asked if I could leave my arms in the locker with my clothes. They finally asked me to hook my thumbs in my belt loops and that worked--it makes the tattos visible and I still fit in the CT machine, too. After she was done the CT tech said I need to wear the same jeans to each session. I laughed, but now I'm not so sure. I with it meant I could get more of these jeans, but they don't make them anymore.

We had our consultation with the radiation oncologist which didn't quite turn out as I'd planned. The fellow came in, a Canadian new to California, to do the intial exam and questioning. (Note: Apparently some Hodgkin's patients feel pain in their lymph nodes immediately after drinking alcohol. Quite unfair.) Then the radiation oncolgist came in and gave us the not-so-good news. (Remember that gap between medical and radiation oncology? Here it is again.) On the positive side, my new stage is 1A. On the not-so-positive side, treating 1A with radiation only means they radiate nearly all of me--neck, chest, abdomen. No pelvis, so that's something. But quite a bit more than the medical oncologist told me. For a new Hodgkin's case stage 1A, this type of radiation is 80 - 88% effective. Before 1992, radiation was the only treatment given for Hodgkin's, so they have a lot of data and experience with new patients. They have no data on how effective it is on a recurring case because so few patients treated with Stanford V chemo relapse. In fact, he continued, my case is probably unique. Yippee. Of course, if I relapse again, I'm probably going to get leeches.

This type of radiation is done in two 20 daily sessions with a week or two in between and after to recover. This has to be the difference between radiation with intent to cure and the radiation 'insurance' I got last time, which only took one round of 20 daily sessions. Kevin and I are both convinced it was failing to radiation the left armpit that caused the relapse, and so I felt rude when I pointedly responded to the radiation oncology fellow's "Why are you here?" question with "Well, I just didn't get enough last time.

The side effects are, well, tedious and we won't go there. Except to say that radiation causes hair loss only in the areas radiated, and I'll lose some on the back of my neck. No chance of getting the bikini line radiated, apparently.

For my radiation consult, I didn't even bring my 'hospital' purse--the big one with Nana's cross in it. And I wasn't worried or freaking out over it. Either I've resigned myself to the fact that mojo has no impact, or I'm pissed at my karma for letting me down once already.

I went to the dentist today, and she made me paranoid about my saliva. Radiation can cause the salivary glands to stop producing saliva, which can exacerbate tooth decay. All day I tried to figure out if I had enough saliva. It's like trying to determine if your tongue is too big.

Monday, January 20, 2003

I've been on vacation from work, preferring not to deal with it for now. Late last year I had been considering changing careers, but my choices changed from being a consultant or stay-at-home-mom to being a full-time cancer patient or not. I've been slowly letting people at work know; last year I sent an email to everyone I work closely with but I haven't done that this time. It's definitely less dramatic, and I feel like a bit of a loser. Getting cancer once is tragic, twice is pushing it. I should stop saying, "I've relapsed" because it makes it sound like I fell off the cancer wagon and need to start on those 12 steps again. And if it comes back again people will stage whisper, "Don't encourage her--she's just doing it for the attention".

Friday, January 17, 2003

Radiation! Yes, it's radiation! (Never thought I'd be excited to say that.) My doctor called, she and the radiation oncologist conferred and it seems I haven't had enough radiation to the left armpit to preclude having more. They're also going to radiate the mediasternum, or the center of my chest. That's where the side effects will come in, because the heart and lungs are right there, too. We'll find out more next Wednesday when we meet with the radiation oncologist.

One of the frustrating things about this relapse is the second guessing. The medical oncology team told me that I would receive radiation to the left armpit after my chemotherapy, but I didn't. Which makes me wonder if that isn't the reason for the relapse. There's a real gap between the medical oncology team and the radiation oncology team. After my chemo when I met with the radiation oncologist for the first time he told me I may be sterile from the chemotherapy. Irregardless of the correctness of his information, why on earth is he talking to me about it? It's not his field, and all he's going to do is scare the crap out of people. And I got very little attention from the radiation oncologists. My weekly meetings were perfunctory, so much so that twice the fellow (I only saw the doctor once) didn't even bother to review my bloodwork, saying it was probably fine. I predict Kevin and I will be quite the pain in the ass to this guy next week.

Thursday, January 16, 2003

Today was my appointment with my regular oncologist, and she confirmed, for the most part, what I'd feared. She believes this is a relapse, that the Hodgkin's has come back in the lymph node under my left arm. If it isn't Hodgkin's, apparently the options are *much* worse, e.g., another kind of cancer. It's unusual for an early staged case of Hodgkin's to relapse, but I don't seem to be the typical Hodgkin's case. They've reviewed my case at Stanford's Hodgkin's conference (again), and even consulted with the "Godfather of Hodgkin's". This kind of attention is weirdly comforting, because lots of people are paying attention, but I'd rather be one of those run-of-the-mill already cured cases.

They want to confirm this diagnosis with a biopsy. They'll try a fine needle biopsy first, and if that isn't conclusive then a full biopsy or removal of the lymph node. That was areal treat--I got to strip to the waist in front of three doctors & my husband. Being a breast surgeon he wanted to make sure I didn't have breast cancer. I swear if he had recommended a mammogram I would have slugged him. His fellow was told to have a feel for the lymph node (another benefit of being an unusual case), but he wasn't having much luck. He obviously hadn't been taught the proper 'claw' technique required to dig deep into the soft flesh of the armpit, so we played "warmer/colder" until he got it.

There are two treatment options for a Hodgkin's relapse. The first is a bone marrow transplant, which, despite the name, doesn't require a donation from anyone. They can use my own. After they effectively kill me, that is. They use higher doses of chemo than I had before and it has, as my doctor states, "residual toxicity". The second is radiation for curative intent. (Makes me wonder what the intent was last time.) This is the only treatment they had 20 years ago, and it was pretty effective. The doctor said that a bone marrow transplant has a 50% cure rate (I declined to ask what happened to the other 50%). She wasn't sure, but hazarded that radiation had the same success rate. Hmmm, which one shall I have?

I had an ultrasound on my armpit to see how deep the lymph node was. 'Ultrasound Armpit' would be a good band name.

Today I had my needle biopsy or FNA (fine needle aspiration). After I had a very tasty lunch with a colleague, of course. I was trying very hard during the procedure not to burp Thai food. Basically they hold the lymph node down with the ultrasound thingy (swaddled in a sterile plastic bag) and then stick a needle in it and get some cells. They use a local anesthetic and that, paradoxically, hurts the most. The procedure was performed by someone who didn't have much experience, and it was interesting hearing the experienced radiologist (who was holding the ultrasound thingy) using phrases like, "redirect that" and "use the horizontal axis" when he really meant "you totally missed it" and "the long way--no, no, the OTHER long way".

Driving myself to these appointments makes me feel less sick, somehow. I can stay in denial when I'm running down the parking garage steps because I was having such a good time at lunch I left much later than I should have. It's probably making Kevin crazy because I'm sure I'm forgetting to tell him some details.

Results from the biopsy are supposed to be out today, it could be positive for Hodgkin's, positive for something much worse, or inconclusive. I'm hoping for the first. I finally get the call--it's Hodgkin's. Now to determine treatment--the medical oncologist and radiation oncologist are going to confer, but the determining factor will be how much residual radiation the armpit received last time--apparently if you get too much radiation it can cause cancer.

Tuesday, January 14, 2003

Lies, lies, and more lies. For anyone who I talked to last week, I lied about my checkup. While it was true that my doctor was out sick, I left out, as Paul Harvey would say, the rest of the story. In a nutshell, I've relapsed. (Makes it sound like I need a 12 step program, doesn't it?)

I am Schrodinger's Cat. They've discovered an abnormality on the preliminary reading of the PET scan I had done last Thursday. My oncologist is out sick, but the attending could feel a corresponding lump, more like a melted Tootsie Roll than a lymph node, in my left armpit. She's sending me in for a CT scan.

It's never easy to get bad news, and this time was no different. When the doctor and the fellow came in together (after I was examined earlier by the fellow) they were all breezy and chatty, asking about Conor and smiling a lot. Then they dropped the boom. I'm sure there's a manual somewhere that says to make sure to give bad news quickly, then indicate the appointment is over and hustle them out because, man, those people will tie up an exam room forever with their wailing and carrying on! Kevin and I drove to Stanford separately; I left earlier to get my chest X-ray and blood work, and he was going to meet me for the doctor's appointment. But things went quicker than expected and I ended up seeing the doctor early. They ushered me out of the exam room and into the hallway about 30 seconds after they used the words 'abnormality' and 'CT scan', which is where I found Kevin.

Is this the beginning of my next cancer treatment--the dreaded bone marrow transplant? Or is it a false alarm on my continuing journey? I'm quite deep into denial and confident that that is the truth. Part of my denial is a refusal to learn any more about a bone marrow transplant, but you can read more about it here.

Things that keep me going:
The fellow didn't feel anything during his physical exam.
I feel terrible, like I have the flu, so maybe that's causing my lymph node to enlarge.

Things that bring me down:
Fellows never feel anything--they usually have to ask me where it is.
I feel terrible, like I have the flu, so I'm just getting a taste of how very very very crappy I'm going to feel during a bone marrow transplant.

I had the CT scan, but my doctor is still sick so I can't see her. Apparently she has pneumonia. On the way in, Kevin and I watched a bone marrow transplant patient (easily identifiable by their baldness and bright pink filters on their respirator) pick their way across the street in front of our car. Coincidence or harbinger?

Since the next logical step (based on my *vast* experience reading Hodgkin's mailing lists) would be a biopsy, I ask the nurse to just go ahead and schedule a biopsy. She said the doctor wants to examine me because the location of the lymph node would determine the type of biopsy. If it's in deep, then a breast surgeon would be needed.

My doctor is supposed to call me at home, and she does, but I'm not in and she leaves a message saying she'll call me back later. I'm in total denial. This is just a thing, a transient never-to-be-identified thing, and I'm fine. I'm enjoying a few days off; Conor and I are hanging out and "working" on our house. However, I'm mentally planning for those super doses of chemo like it's some kind of vacation. Okay, next time I'll get out more, rent DVD's, etc. This time I'll get those pictures in the photo albums.

I'm starting to get angry about this whole thing. As if they're keeping the truth (i.e., that I'm fine) from me deliberately. This belief is fueled further by the fact that the PET scan place has had a busy number all afternoon. I know it's totally irrational, but being in denial is keeping me going. Maybe by Monday I'll be so sick of wondering that any diagnosis will be a relief.

The nurse called this afternoon, and part of me wonders why on earth I wanted to talk to her. Once again, their definition of a good outcome and mine are vastly different. She said, and I quote, "At least you have treatment options." Jesus, I hadn't even considered my untimely demise. She's so nice, though, I can't stay mad. My denial is shaken, though, and I sign back up for the high-volume Hodgkin's mailing list.

Friday, January 03, 2003

I went to my gynecologist for my annual exam, and she recommended (due to my advanced age) that I get a mammogram. Wait a minute, I protested, I'm having a PET scan, chest X-rays, and bloodwork done next week! Surely I don't need yet another test. Oh, and did I mention that I ALREADY had cancer?

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