Adventures with Hodgkin's

I got the results of my PET/CT scan, and, in the words of the radiation oncologist, it was "totally normal". Yippee! So I quit my job.

I got the PET/CT scan scheduled without having to resort to pretending to be the insurance company phoning in authorization. Stanford is building a new oncology center, but it isn't finished. (The new garage is done, and it's staffed with people at the entrance and exit directing you in and out, although there are lane markers and signs all over the place. I haven't figured that one out.) Anyway, the PET/CT machine is in a trailer in the parking lot. There's the room with the machine in it, the control room with (usually) the technician in it, a bathroom, and a relaxation room where you lay down after the radioactive glucose injection. And they run people through there, too, so there were usually two other people, including the technician, all in this tiny trailer. It got to be somewhat amusing when it came time to trade places. It was definitely less amusing when it came time to discuss medical history. For example, the woman before me was there for lymphoma in her pelvis, and so she had to drink tons of water AND take a diuretic. A tricky combination, so she had to wear a Depends.

My experience wasn't quite so involved. And it was significantly faster than the previous PET scans--it took less than 35 minutes, and then another 2 for the low resolution CT scan. As far as living up to the hype, well, the speed definitely increased this patient's comfort.

Because it was my first time in Stanford's nuclear medicine department (ah, the fiefdoms), there was lots of confusion regarding my case. They had a couple of test reports and a case summary, but no one seemed capable of reading it before asking me questions full of medical jargon. But I did get a look at one test result I hadn't seen before (I think it was my last PET) and it stated, "Patients breasts are unremarkable." UNREMARKABLE? How insulting, I thought, until I noticed that they said the same thing about my gall bladder. What would it be like with a doctor? You'd be getting all hot and heavy, and he'd say, "Oh, your breasts are so...so...unremarkable."

I went a got a haircut with a new, local, stylist. Hairdresser? Whatever. He was very nice, and right around the corner. I discovered another thing about conversing with folks when I need to bring up the whole cancer thing. First, it's not about me at that point. People need time to process and respond to it.

Had to wrestle with insurance and the hospital to schedule a combination PET/CT scan. See, the hospital requires authorization to schedule the test, but my insurance doesn't require authorization for this kind of test so they don't give it. Amusing, huh? This is new--usually I have a PET at an outside place and if it's bad news, then a follow-up CT at Stanford. But Stanford just got the new machine--the hype behind the combo is, "This hybrid technology combines the strengths of two well-established imaging modalities in one imaging session to more accurately diagnose and locate cancers while increasing patient comfort." Perhaps this means I'll get to lay on a padded table, and they'll put liquor in the contrast I have to drink.

I'm still employed and technically working. This week I'm working from home--the thrill of getting dressed and walking through the Financial District has worn off.

I had my post-treatment doctor visit with radiation oncology. I saw the resident first, and he asked side effect questions, and I got to list them, including the new one. Turns out I was right, the nervy/tingly thing is a don't-call-it'll-go-away-probably. He asked about others, including if I had pain when drinking alcohol, but qualified it by saying IMMEDIATELY after drinking, not the next day.

Then I saw the doctor. This is my doctor, by the way. I can't remember why I googled him--was it to put in a previous post? Anyway, there he is. Head of the department, no less. Very nice man. Quite positive, but a bit too blithe regarding my case for me. During the visit he told me that a second recurrence would generally occur much sooner than the first recurrence. I then asked when my PET/CT scan would be, and he said as soon as it could be scheduled. I then asked when the next one would be. He said in a year. Hmmm, said I, if my first recurrence was within six months, detected by an early PET, then the next would be sooner, so a year is a rather long time, don't you think? Well, calculates the resident, if it's a year from end of treatment then it would be in April, and that's less than a year from now! Then the doctor says I can see them in radiation oncology, or have my two month checkups (every two months instead of every three months for us relapsers) with medical oncology. I went and scheduled my next appointment with medical oncology. (They also confirmed the PET diagnosis with a physical exam, so I'm not paranoid about relying on the PET entirely.)

Speaking of blitheness, the resident was also Mr. Happy-Go-Lucky regarding my case, too. (Or am I just too doom-n-gloom?) He was going on about having another child (although skirting making any formal recommendations). I asked about testing, and apparently you can have an MRI when you're pregnant.

I asked a statistical question to a Hodgkin's internet group, and got a number of interesting questions. I believe I've figured something out--there are three types of people when it comes to statistics. Those that get reassurance from good odds, those that rise to the challenge of bad odds, and those that don't want to hear about the odds at all.

Last week I was in a training class for work. No internet access. Can you imagine? How am I to keep this updated? Don't they understand the pressing need here? Granted, I would have paid even less attention than I actually did, but I would have been excessively diverted. Nearly working (sitting in training can't really be considered working in this business) was exhausting. I went to bed at 7:30pm two nights; and managed to stay up until 9:30 the rest. Poor Conor--he wasn't thrilled with Mommy's early bedtime because it became his bedtime. Poor Kevin!

In a concerted effort to address the demons that plague me, I've done some research on some unknowns. Now I'll have to find new things to worry about, but that shouldn't be a problem. Right now, as a matter of fact, I'm imagining that the doctor said the nervy/tingly thing was one of the CALL RIGHT AWAY items, and my spine is disintegrating even as I type.