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I virtually went back to work Monday – telecommuting from home. I had had separate emails from my boss, his boss, and his boss saying please rest and take care of yourself, stop reading your email. My surgeon was saying “Have you resumed normal activity?” Think she would have let me go back last week. And after MLK day and everything being closed the next two days with an ice storm, the kids off to work and school, I was ready to do something – anything – even work! I did have two doctor visits this week.
We’re gearing up for radiation – first visit requires lying in a very particular position with your arms over your head and elbows in a strange position for longer than you want to. If I had known exactly what I had to do, I would have practiced and stretched more. They have a kind of vacuum beanbag that they use to position you so you are in the same position every visit. They also cover you with red ink marks and tattoos, and take pictures to record the position. And then x-rays so the radiation oncologist can plan the whole thing so it is very targeted. Tuesday I go back to get started; the treatments only take about 15 minutes, but will be every weekday until the middle of March. They say that the side effects from radiation are much less than chemo – but I do have to wear all cotton next to my skin for a few months, use special skin cream, and not go out in the sun for a year.
The visit to my oncologist was even more interesting. My surgeon had only told me that the final pathology report had showed a tiny residual area of tumor – bad news, because I had hoped for a “complete pathological response” from the chemo. My oncologist went through all *12 pages* of the report with me and said I was peculiar (we all knew that, right?). She meant unusual and complicated, of course ;-) The good news is that the residual area was not a remainder of the tumor we were treating – it is a completely different tumor (the bad news). Of course, the really good news would be that there was nothing there – but this is pretty good, because it is estrogen-receptor positive and HER-2 negative, which the other was not. So the treatment I had would not have been expected to work on it. And the chemo *did* get all of the large visible tumor – that was the only thing that wasn’t there. So chances are good that any stray bits that wandered off elsewhere were killed by the chemo, too.
But wait, there’s more! Apparently 4 or 5 pathologists ended up looking at this, because in that one breast, there were bits of every type of breast cancer possible. They wanted to be sure, because it is unusual. The other side was fine – but clearly, the double mastectomy was the right thing to do – everything that was misbehaving, or might have been thinking about it, is gone.
Remember when I said if there was a treatment, I was going to have it? Because of the estrogen-positive stuff, I’ll be starting on five years of anti-estrogen treatment after radiation – not Tamoxifen, but something newer with fewer dubious side-effects. (I should have paid more attention, but just this much was a lot to take in.) And it is just a daily pill! If the other stuff they found was all I had had in the first place, a lumpectomy and the pills would have been it – no chemo, no radiation – so it’s not a huge concern. The big side-effect is osteoporosis, so I’m off for a bone-density scan next month before I start it. And will need to monitor that, and gets lots of calcium. Ice cream has lots of calcium, right?
OK, I don’t want to leave anyone with the impression that the hospital did anything medically dangerous. They had me hooked me up to an IV which should have been disconnected, to oxygen (have no idea why – my blood oxygen was 100% going into surgery), to those leg massagers to prevent blood clots, and then every time I asked for assistance so I could go to the bathroom (which was a lot, since I could only have clear liquids and they still had me on the IV) asked me why I needed assistance. Of course, if I hadn’t been hooked up to all that stuff, I would have been up walking around with no danger of blood clots in my legs. And no information whatsoever about why they were doing what, and no checks except for the tech taking blood pressure and temperature every four hours. They were surly when I asked questions. Needless to say, I felt pretty much like I had been tied to the bed and abandoned. Robert had left because the evening shift nurse seemed just fine – very helpful and friendly. Once it was daylight I called Robert. When I asked when my doctor was going to be there so I could be released, I was told there was nothing indicating I was being released that day, and doctors were very busy and didn’t have time to check on patients (I’m quoting, truly!), so I called my surgeon’s office. My surgeon showed up and disconnected all that stuff herself and noted they hadn’t even kept up my chart. If I had had to stay another hour or two, I probably would have thrown something at someone.
It was just disappointing not to feel cared for at a very stressful time, all the more so because all the medical professionals (except that infamous plastic surgeon) up to then had been wonderful. All the staff in the surgery center were great, and I had had good experiences with day surgery and the dye test for the port-a-cath there. Seton has all these giant posters up with their mission with stuff about being patient-centered and all that. Bleh.
I’ve just been to the surgeon for a checkup, and she says I’m doing fine. The written pathology report is not back yet, she thinks because the pathologist is not finding anything and so is looking extra hard. The sentinel lymph node was negative, which means that either nothing had ever spread, or the chemo knocked it out entirely. So that is all really good news. Not everyone who has a clean MRI has clean results when they actually look at the tissue microscopically.
I am already feeling practically normal and annoying my guys at work by reading my work email and being my usual control-freak self. Am supposed to start radiation Jan 23, and will probably go back to work at least part-time that week – Hilde starts her new job that week, Arend starts classes, and I would probably go stir-crazy, although I could do some genealogy. Yesterday I got a note from a Hersman looking for info about her father – I tracked him down through the census and the WV death records – turns out she and I are 4th cousins – her great-grandfather was A.M. Hersman’s 1st cousin, for those of you who are Hersman descendants.
Don’t think I’m going to get a sense of humor about the hospital stay – I’m thinking when people are doing their best and things go wrong, I can take it lightly, but when they don’t even try, I’m not very forgiving.
Thanks for all your thoughts, prayers, and good wishes.
Will write you all a witty update as soon as I can find the humor in it. The night and a.m. nurses today were the first I had encountered that were not tremendously caring and attentive – my surgeon, when she finally got there today, was not happy with the orders that had been ignored…Anyway, I’m fine – worst thing was that they never stopped the IV and I am full of gallons of potassium chloride solution – I ‘ve turned into a fat lady overnight.
Surgery was today. Lisa checked in at Seton Medical Center at 9:00, surgery was at 12:00, and she is resting in the hospital, under 23 hour observation (we don’t really know why it’s not 24). At this point all is well. She will come home tomorrow and continue recovery here.
Robert, writing for Lisa