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So, one of y’all gently inquired today, and I realized most of you hadn’t heard from me in a while – as a matter of fact, months ago when I was only halfway through radiation. Two things – I think I was enjoying getting back to normal, and work has been very stressful. We got a new administration in January and they are very gung-ho to fix everything instantly.
So – my eyebrows are back! I finished radiation the end of March and had stopped peeling by the end of April. I was prescribed some very fancy organic rejuvenating skin cream – it feels nice, smells wonderful but at $50 a jar. I spent most of an hour (Robert was very patient) in CVS reading the labels on all the body lotions, and decided the key must be the safflower oil – everything on the shelf was glycerin- or mineral oil-based. I got a bottle of Aveeno body lotion based on sesame oil for $4.99 – the only one that used a vegetable oil. I did a half and half test and got identical results – baby-smooth skin.
Started going to work without the wig the week after I finished radiation – everyone was a bit surprised, but the consensus is it is ‘cute’; would prefer it be described as chic. As it has grown out, it curled! They said it often happened – after 55 years of straight-as-a-stick, I have silky curls. Now, of course, I have no idea what to do with it ;-)
I have lost all the weight I gained during chemo, and weigh less than I have for 30 years. All the things I couldn’t wear are now too loose. So I’ve done some shopping.
I’m going to taking Femara, to prevent recurrence, for 5 years – just a daily pill. It causes bone loss, so I had a bone scan. Turns out I already have the bone density of a 90-year-old. Since I fell off the deck (twice), pretty hard, when we were rebuilding it last year, I am not too concerned that my bones are real fragile yet. My oncologist prescribed Fosamax, but I read up and decided I wasn’t ready to go there yet – it stops bone loss, but it also stops bone regeneration – and it stays in your body for at least 10 years, so it is irreversible once you start it. I had made an appointment for a physical, ’cause I figured someone should take a look at the rest of me. My FP said I could just take calcitonin, plus excercise, calcium, Vitamin D, and all that. Then my cholesterol results came back – LDL was high, although everything else was good. Seeing as how we have been drinking 2% milk, eating very little meat, and don’t do junk food, fried food, fat food, processed food, etc., this is distressing.
However, I feel fine. Am going to take vitamins, keep eating right, exercising, and just living. I finished the Herceptin infusions June 20, which was doubly excellent, because it was West Virginia Day.
Arend is home for the summer but will be going to Ox-Bow, an artist’s camp in Michigan affiliated with the Art Institute, the end of July. We may go to WV in August. Have also discussed Romania in the fall, but no real plans yet. Hilde is settled in in Dallas, working lots of weekends, for which she gets overtime pay, so she’s flush, if tired.
Thanks to all y’all for your help, encouragement, and thoughts and prayers over the last year. Knowing you’re all out there thinking about me has been a huge boost.
Today I’m almost half-way through radiation – think it will be 33 treatments, and today was number 16. So far, no side-effects to speak of – I’m starting to get a little bit of reddening, like a very mild sunburn. And I am tired – but I’m not sure whether that is the radiation or work, which is stressful right now – new administration who, of course, want to improve everything immediately.
The worst part is a calendula extract in petrolatum ointment – smells like marigolds (which it is – there’s a reason you plant it in the garden to repel bugs) – and is pretty gooey. But there was a large study in France that showed it reduced severe side-effects (referred to as “skin irritation from radiation therapy” but actually radiation burns ;-) which were 60% of patients in the comparison (an aloe-vera-based ointment) and only 40% with calendula ointment. So there you are – the best modern medicine has to offer for this is two ancient natural burn remedies.
Last week I had one of my every-three-week Herceptin infusions on Valentine’s Day, and an ex-patient sent a barbershop quartet to sing in the chemo room.
I’m driving myself to the daily radiation appointments – 12:45 every day, and they fit nicely into what would be my lunch hour, if I took a lunch hour. Radiation patients are much chattier in the waiting room than chemo patients – but we are in and out so fast that we tend to have serial conversations in daily installments – except when there is a new patient, which takes longer so the rest of us pile up, or equipment has to be repaired, as it was yesterday. None of us believed the guy ahead of me when he came out and said “I broke the machine!” – but we all had to wait while the repairman fixed it – about half an hour and we had a cozy chat.
Winter seems to have ended here – Wednesday last week was a high of 45 – today it was 80. I am *very* impatient for my hair to get longer – it is a centimeter (Hilde measured it for me Sunday) and I think it looks very chic – but too startling for work just yet. I told my brother it looks just like his in 4th grade when he had a very short early-sixties crew cut – I have the picture on the piano. I had Monday off and went to the clinic bare-headed – first time I’d gone out without the wig or a hat/scarf/etc. since August. The staff said it looked good – but then they have to be cheery with the patients, right?
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
Now they tell me…
So should I have a contest to rename this series? Any suggestions?
Today I went for the last chemo, everything went well, and at the end the chemo nurses gathered around and threw confetti. (I’ll be seeing them tomorrow for the follow-up bone marrow booster, next week and the week after for Herceptin, and then follow-up Herceptin every three weeks for a year – but this was the last real chemo.)
So onward – I saw my surgeon last Friday, will see the radiologist week after next. Surgery will be the beginning of January – Hilde’s graduating from Texas Tech Dec. 16, Arend will be home just in time for her graduation, and so I get to enjoy that and Christmas before surgery. Both Hilde and Arend will still be here the beginning of January, which will be great. They usually wait a month or so before radiology, so I’m figuring I’ll be done with everything by the end of March. And my eyebrows are almost back! (Time to try the Just for Men trick to dye them that one of y’all shared). My hair is unfortunately still about as long as the eyebrows, but visibly growing back.
You guys have all been great – I really appreciate the thoughts, prayers, notes, suggestions, the sharing of your own lives, genealogy discussions and data (it’s given me a *lot* to focus and work on), the scarves and bandannas and whatnot. I’ll let y’all know when surgery is scheduled, and progress after that.
Meanwhile, I talked to an old friend from church and work yesterday (he told me about the job I’ve got now – he didn’t know at the time I’d end up as his supervisor for a while – might have changed his mind ;-), who I hadn’t talked to much in a while, and he shared with me that his college-age son had been diagnosed with lymphoma and started chemo last month. I told him why my hair, which he had complimented me on, looked so good, and we shared some cancer thoughts and stories. I told him about y’all and that I would ask y’all to keep his son in your thoughts and prayers.
Hello to all. I’m feeling almost normal two weeks after the last chemo. Most of my tastebuds seem to be working, and I can even feel all my toes. Yesterday I spent going around to various medical establishments – radiology oncologist, my Herceptin infusion, a MUGA (neat radiological video of my heart), an MRI, and a discussion with the surgeon’s office.I’m scheduled for a double mastectomy and sentinel lymph node biopsy on January 8. Even though MRI in September showed nothing visible, my surgeon and oncologist are concerned I would be at higher risk for a recurrence with just a lumpectomy. I’ve decided against immediate reconstruction. I’ll be in the hospital overnight, and off work for 2-3 weeks. Once I can raise my arms above my head again, usually 2-3 weeks, I’ll start radiation therapy, which will be daily for about 6 weeks, at the same clinic I’ve been going to for chemotherapy. So I should be all done with treatment before the end of March, except for the Herceptin which will continue every three weeks for a year. I have about a quarter inch of hair back already, so I’m hoping to be out of the wig, too, by then or soon after.
Meanwhile, I get a break from treatment for three weeks, Hilde’s graduation is next week (yay, Hilde!), Arend will be home for that, and both will be here for the holidays and several weeks into January.