Radiation
Tuesday, 5/6/03: Yesterday was another meeting with Dr. Roberge and Dr. Hoppe. They went over the information about short term and long term side effects that I’d heard at the first visit, and then it was off to a CT scan, this one with no fasting, pina colada stuff, or injections (if they keep taking indignities away, I’ll have nothing to write about!). The technician scanned me, then amused herself drawing X’s on my torso. Three of them needed to be permanent, so I’m now the proud owner (bearer?) of three tiny tattoo dots. One’s in the middle of my sternum, and each of my sides has one, at the same latitude as the middle one.
My “practice radiation” appointment will be on Thursday . They’ll put me into the radiation machine to practice positioning me but won’t turn the machine on. Radiation could start as early as Friday. Until then, Mom (who’s visiting, probably for the last time during my treatment) and I will continue with credit card therapy interspersed with meals in restaurants. I have a lot of pent-up demand.
Friday, 5/9/03: Chemo brain strikes again! Next time, I’ll check the date as well as the day when I say that my appointment is on Thursday. As a bonus, I’ll check before I’ve driven the 20 minutes to Stanford. My practice radiation is next Thursday, the 15th, and I’ll start treatment on Friday. I was pretty grouchy about it yesterday, because I want to get this show on the road.
Haven’t given an update on side effects recently. My weight is within 2 lbs. of normal, and the other side effects, except for chemo-brain, are pretty much gone, although I tire out more quickly than usual. Sheila said my hair would start coming back 4 weeks after chemo ended, so I think it’s making a last-ditch attempt to make me bald before that magic day.
Monday, 5/12/03: Good news - Stanford just called, and they can do my practice appointment tomorrow, and start radiation treatments on Wednesday.
Tuesday, 5/13/03: Just got back from my practice appointment. My impression from the waiting room was that the patients getting radiation seemed sicker and older than the ones having chemo. Ironic. Then it occured to me that the infusion center was solely for outpatients, and maybe the radiation part has inpatients too. Or maybe Tuesdays were mostly Hodgkins patients in the infusion center, and we’re a young, healthy lot when you disregard the whole cancer thing. There was a boy not much older than Ben getting radiation. How do his parents stand it?
The appointment was yet more lying still on a big machine that makes grinding noises. The two technicians, Jackie and Merlina, positioned me carefully, then drew on me with a magic marker. They put waterproof stickers on the parts they liked best (and I’m sure I’ll hear from the comedians in the audience about that). Previous patients have left stickers on the visible parts of the machine to admire while I’m keeping as still as possible. I guess projecting cartoons on the ceiling is out of the question. The way it will go is, they’ll position me on the machine and leave the room. Then the machine will make a loud buzzing noise while I stay still, and they come back and let me go home. I’ll also have weekly blood tests and surprise doctor visits. It’s a surprise because they don’t tell me which day they’ll be. Dr. Hoppe will just leave a note in my chart that he wants to see me that day. Oh, well, it’s not like I had pressing appointments elsewhere.
I had a brief meeting with the nurse to get the do’s-and-don’t’s for radiation patients. She gave me some skin cream to use on the areas which will be irradiated (but not within 4 hours of an appointment - they’re afraid I’ll sizzle). She also said to use a mild soap like Ivory and avoid getting too much vitamin C. Why? I didn’t ask.
Stanford has just opened a new underground parking garage with four large, identical levels. This is cruel to patients with chemo-brain and fatigue, because you have to walk really far before you discover that your car isn’t where you thought you left it.
Wednesday, 5/14/03: Actual radiation is pretty much exactly like practice radiation. I also had a surprise doctor visit, notable because it was a surprise to the doctor as well (Him: “Did you want to see me?” Me: “No, they told me that you wanted to see me.” Him: “They told me that you wanted to see me.” Insert lines from any number of comedy sketches here).
Thursday, 5/15/03: The new parking garage entrance features uniformed employees roughly every 50 feet, presumably to help those bewildered by the idea of parking. Near the exit, yet more people will point to the road for you, if the effort of parking rendered you incapable of reading the “Right turn only” signs. I asked one of the pointers whether that was his entire job. He said that he was also tending the marijuana plants in the adjacent garden, and if I come back in August, he’ll give me some.
Friday, 5/16/03: Sprouts!
Saturday, 5/17/03: Yup, hair is definitely coming in on my head. Still more Sinead O’Connor than Dame Judi Dench, but it’s a start…..
Monday, 5/19/03: Here’s how Hodgkins is like pregnancy:
- Frequent doctor visits
- Dietary restrictions
- Bizarre hair effects
- Digestive issues, and
- A specialized wardrobe that you never want to see again once the ordeal is over
Tuesday, 5/20/02: Saw Dr. Hoppe today after my radiation. He said that of my three symptoms (fatigue, rash, and asthma-like feeling), only one, fatigue, is due to the radiation. He suggested that the others are seasonal allergies (seems likely, since everyone I know with hay fever is suffering right now). Yesterday’s blood test results show that I’m not anemic, although the red counts are on the very low side of normal.
Dr. Hoppe also confirmed that I’ll have 20 radiation treatments, so my last one will be on June 12, coincidentally Ben’s last day of first grade.
Monday, 5/26/03: Just one more about the parking garage, I promise. For days, I could have sworn that I heard cow noises while waiting for the elevator to come. Also duck noises, and the occasional ping-pong ball. My reaction, naturally, was, “Great - on top of everything else, now I’m insane too.” It turns out that Stanford spent money and time on selecting artwork for the waiting area, including “audio artwork”, to keep people company if they’re waiting alone. Moo.
Tuesday, 6/3/03: Really not much to report. I go every day, they irradiate me, and I leave. The waiting room is still depressing, and I still have X’s drawn all over my torso (strangely, they seem “accidentally” to wash off every weekend). My hair is growing back slowly. It’s at the point where I could go to San Francisco and nobody would look at me twice, but it’s still not ready for the Saratoga Safeway. I don’t get as fatigued as I did the first week, but the sore throat is worse (Dr. Roberge gave me a prescription, but I prefer to self-medicate with Ben & Jerry’s).
Thursday, 6/5/03: Today’s good news - my last radiation treatment will be Wednesday, not Thursday, of next week. I’d thought that the calendar from the radiation technicians showed the practice session, so I’d counted 21 appointments. Nope, I only should have counted twenty. Wahoo!
Also, I’m really liking TiVo’s stock price (it was over 10 today!). Is the correlation to the new software release, or to my absence? Hmmm…..
Sunday, 6/8/03: I had a breakthrough today - went out without my hat or wig. My friends said that my new shorn ‘do made me look like a supermodel. I liked that! But I’m not ready to post a picture quite yet. Come visit, if you want to see it!
Monday, 6/9/03: I saw Dr. Hoppe today for probably the last time while I’m having radiation. He gave me the schedule for follow-up visits. I’m to visit in about two months for a chest x-ray, blood test, and physical exam, then another visit three months after that, then every four months for a year (or maybe it’s every four months until it’s been a year - I’ll figure it out when the time comes). Then I come back a year later. He said that almost everyone has a scare that turns out to be nothing in the first year (abnormal x-ray or CT scan, or something that just isn’t right). If that happens, they’d order a PET scan, and if that still seemed weird, another biopsy, before I’d be back on the treatment carousel again.
I also need to watch out for shingles - the kind that seem like chicken pox, not the roof kind. Although it’s not bad advice to watch out for the roof kind if they’re falling toward your head.
Friday, 6/13/03: I’m done, I’m done, I’m done! My last treatment was on Wednesday, and since then I’ve been eating ice cream and spending time with the family’s most recent first-grade graduate. On Wednesday, I went hatless all day - to my treatment (no big deal - they see bald people all the time) and to Ben’s school, where I volunteered at Field Day. Some of the kids asked questions (”Did you get your hair cut so you can look like Ben?”), but most didn’t give me a second glance. In retrospect, though, it wasn’t my smartest move - it didn’t occur to me that hair protects against sunburns, and now my scalp is an angry shade of pink.
The side effects of radiation are fading slowly. My throat is still pretty sore, so I have to take very little bites and sips of whatever I’m eating or drinking. I’m less tired than I was, but I still need to rest in the middle of every day. No sign of shingles, but the first symptom is a feeling like ants are crawling on your skin, so I have loads of psychosomatic symptoms. I’ve told TiVo that I’m hoping my energy level is back to normal by July 1.
I’m guessing (hoping?) that this is the last update for a while.