Yes I have brought you hope, yes I have paid your fee

Posted by Sappho on October 24th, 2012 filed in Daily Life, Health and Medicine

When you have cancer, you hope, not for word that you have been cured, but for what’s called “no evidence of disease,” an ambiguous designation that says that we don’t know that the cancer is gone, that it could after all come back at any time, but we can see no evidence now that you still have the disease.

As it turns out, the word I got from my PET scan is even a little more ambiguous than that. I have, not no evidence of disease, but no evidence that’s particularly likely to be disease. There are a couple of spots of concern, like the marks found on an initial mammogram that will probably prove to be calcifications, but might be something more, and get you called back, or the spots a dentist’s office marks on your X-ray, not for treatment, but for further observation. One is more likely gas in the colon than cancer. Another is more likely an area not yet fully healed from the hysterectomy than cancer. Probably the seven months of alternating radiation and chemotherapy got everything that the hysterectomy didn’t. I won’t need further chemotherapy, just follow up in three months. It amounts to a remission.

This is how a PET scan works. You need to arrive hydrated, but with low blood sugar, so that the radioactive dye combined with sugar that they use will circulate properly in your body. So you get instructions that start days before the scan. Mine went like this:

1. Nothing to eat, smoke or chew – 6 hours prior to your exam. Please be sure to drink plenty of non-flavored water prior to your exam 24oz – 32oz.
2. Avoid caffeine, sugar and tobacco for 24 hours prior to your exam.
3. Avoid Heavy exercise for 72 hours prior to your exam.
4. Eating the night before or the morning of your scan (if your scan is before noon time – it should be dinner) – it should be high in protein and low in carbohydrates. High protein – steak, baked chicken, fish, cheese, asparagus, broccoli, mushrooms, eggs, bacon, sausage. No Pasta, Potatoes, Rice or Bread. No sugar (natural or artificial), no milk, juices, or fruit.
5. Continue to take medications prescribed by your physician. If you have been advised to take your medication with food, eat nothing more than a few crackers 4-8 hours prior to your exam.
6. Wear warm, comfortable clothes with no metal (zippers, clasps, metal components).

I kept up my normal exercise routine that week, but at a low number of reps for my morning exercises and making my lunchtime walks very short; I figured that way I’d keep the habit and it wouldn’t be heavy exercise. I made my dinner the night before chicken breast and cucumber. The day of the exam I dressed in a T-shirt, sweatpants, and a camisole instead of a bra, to avoid metal. (Technically, this outfit doesn’t really fit my company dress code, but I figured that under the circumstances, it being a Friday and my job being software test rather than something like sales, it would pass.)

I had gone for the earliest possible appointment in the morning, to miss the least possible time from work. This meant that I had to arrive at the hospital by 7:30am, so, in order to get through my morning routine, including walking the dog, I had my alarm set for 5am. I still have enough residual chemotherapy fatigue that a 5am alarm is not fun (“Oh I could hide beneath the wings . Of the bluebird as he sings. The six o’clock alarm would never ring.”), but I made it. After hurrying around the hospital (careful not to run, since that might be heavy exercise) to find the right entrance and the right place to get the scan, I was ushered to a room, where I got to lie down and nap for an hour, with an IV in my arm to send all that radioactive dye through my system. Then I got taken to another room, asked whether I had claustrophobia (no, and it’s a good thing, because daily radiation treatment would have been unpleasant if I did have claustrophobia), and then given iodine and sent through a machine to get the scan. This part doesn’t take very long.

What takes longer is waiting for the results. You can get them any time from the same day (maybe, if everything gets processed quickly and your oncologist is connected to that particular hospital’s computer system) to days later. Since I had my scan on Friday, I probably couldn’t expect my results till Monday. As it turned out, I didn’t get them Monday, either. Monday evening, before I went to the support group Joel runs, I scanned Facebook for my friends’ comments on the debate (“Horses and bayonets!” “Obama is being really rude to Romney.” “The foreign policy debate is now discussing education policy. Obama supports smaller class sizes.” “Syria is not Iran’s route to the sea. See the attached map of Iran with arrows pointing to the sea.”). And, as they cheered their respective sides in the debate, I wondered when I would get my results. After the support group, I sent an email to my oncologist.

I got my results the next day, Tuesday, yesterday, by phone. They came early in the afternoon. I think the oncologist must have decided waiting till he had time for a phone call was better than sending email right away, so he could give a sufficiently reassuring explanation of the spots that will need further observation. He has experience with this hospital. Their reports often read like this. They tend to err in the direction of overreporting rather than underreporting. It’s better that they err in the direction of overreporting rather than underreporting. In all likelihood, the spots they noted aren’t, in fact, cancer. I need no further treatment. I am under no restrictions, and can eat and exercise however I see fit. I have a follow up appointment already next week with the radiation oncologist, an appointment in a couple of weeks with a genetic counselor, and I am to make a follow up appointment in January with my oncologist.

It is as close as I can get, at this point, to being told I am cured. I can hope to get my normal life back.

Here’s a Peter, Paul, and Mary song to celebrate.