Sick

This time I was absolutely wiped out from Wednesday afternoon to Saturday afternoon. I lay around in bed, reading, napping, nibbling on things to keep the queasiness from flaring up. I couldn’t do much else. Eric kept sending me back to bed, I think, or maybe that was me sending me back there (for once). I ate regular meals, I slept regular hours, I waited it out. I wasn’t miserable, I was just bone-deep exhausted. Kind of a new feeling for me–so tired even I couldn’t convince myself to be useful.

It’s day 4 after chemo #2 and I am queasy and quite tired, and taking it easy (for once). I have been napping and reading and resting. I realized yesterday–remembering that I hadn’t added to the blog since before chemo on Tuesday–that it takes a certain amount of energy to write something that is not just a list of complaints, but instead is at least a bit interesting.

This morning I got sick of what was left of my hair (which was falling out in clumps when touched anyway) so here is a photo essay! Click for bigger photos. This morning…half of it gone already, looking pretty sorry.

Results after scrubbing one hemisphere of my head in the shower but not the other!

Then Eric shaved it all off. Voila, the piratical look. After that he shaved it with a razor.

First bandanna choice…

The actual head!

Okay, so that’s how I am striving to think about the chemotherapy treatment I am lucky enough to be able to take into my body this morning.

But I can’t help niggling over the question of how it ended up chem-o-therapy instead of chem-i-therapy. They’re not chemocals.

Books and healer people have been reminding me that the more I can welcome the chemo, accept it, get behind it, visualize it working for me, the better it will work and/or the better I will tolerate it. I have never felt as some patients do, that chemotherapy is a horrible attack imposed on them from (?) their doctors, and they need to resist it or get it out of their bodies as soon as possible. I wouldn’t agree to a medical treatment of any sort that I felt that way about. Nor have I been drawn to visualizing what’s going on with chemo as little Pac Men traveling the paths of my body chasing and eating up harmful cancer cells–that just hasn’t appealed to me. My massage person suggested I imagine it as light, just light, coming through my port and into my body. Maybe I can work with that word “port”…porthole…hmm, sea port where lots of illegal immigrants come ashore to work hard all over the country but tax the social-services system a lot. :)

My hair started to come loose today. My scalp has hurt all day and tonight my little absent-minded tug-test came up with two, three, twelve hairs per tug. It’s weird how I have a scalp-ache…not a headache, just my scalp, all over. I had a tender scalp during the first week after chemo too, for part of a day–but it went away, and I knew that was too early to lose my hair. So now, here it goes.

Things I’m doing besides standard Western medicine’s slash, poison, and burn:

Learning to meditate, getting in touch with the more emotional parts of me

Acupuncture to lessen chemotherapy side effects (nausea)

Drinking nettle infusion to support my liver through chemotherapy

Taking milk thistle supplements, ditto

Taking mushroom tonic and extracts and eating more shiitake mushrooms (anti-tumor, immune-boosting, yummy)

Eating flax oil and ground flax seeds every day, with yogurt or cottage cheese (anti-cancer regimen)

In general, learning more about herbs for cancer and the immune system with the goal of incorporating various preventative treatments into my diet and routine

Reading useful books about living with cancer (some about dying with cancer)

As I have often said, having breast cancer is a half-time job. This time around part of my job is in the kitchen!

Last Friday Eric and I had the initial genetic-testing appointment at the oncologist’s practice. It was with their genetic-testing person, who is an oncologist rather than a trained certified genetic counselor. We found the appointment less than we had hoped: first we watched a very basic 30-minute video on genetic testing for breast cancer, then talked to Dr. G., who didn’t seem to have a lot of information she planned to impart to us. We asked a bunch of questions, which she answered…sort of. I guess you could describe it as: she didn’t answer in a teaching sort of way. She answered in a let’s-get-this-question-done-with sort of way. Not that she was impatient, but her answers didn’t really fill in the blanks for us. Nor did the video. However, she did loan Eric a big expensive textbook called THE GENETIC BASIS OF HUMAN CANCER, in which he plans to read the breast cancer chapter. Maybe that will answer some of our questions. Eric says she talked over my questions–I noticed, but didn’t really resent it, since I seem very thick-skinned in the conversational-style department. Eric resented it for me, though.

This morning’s radical haircut.

That’s the name of the medicine I’m getting the day after each chemo to boost my white blood cell count. It is a brief shot in the arm that I have to drive to Albany and back in order to get. Dr. C. the oncologist says that it is basically prophylactic–it eliminates the risk of me having so few white cells that I get a regular infection and it turns fatal. He told us it was expensive, but I’ve learned some more about it since I got the first one.

Saturday I went to Pennsylvania for the CABC board meeting, which was all day Sunday. Spee drove and spent Sunday visiting Lucas at Westtown. I felt okay if queasy on Saturday, but by Saturday night I felt bad and went to bed early in the hotel room I was sharing with another board member (who was out). My knees ached like crazy. I had a slight fever, which scared me, because my instructions–as an immune-system challenged person since chemo kills off white cells–are to call the oncologist or go to the ER if I have a fever of 100.5 or above. Luckily, it was only 99.3 and it wasn’t going up, so I took some ibuprofen and went to sleep.

Still queasy, no worse, no better, no effect from the Zofran. I wasn’t worried about it getting worse today, though, so that was nice. Still feeling flu-ish in my head. Ran out of energy at 3 PM today and went home to bed instead of continuing to help Paul tile the backsplash in the farmhouse kitchen–darn! Now it’s 9:30 and I’m headed for bed. Despite feeling poorly all day, I was constantly aware of how much better this is than 1995, and how relieved I am to be just feeling regularly sick, mostly, and somewhat functional, instead of sandbagged by the combination of chemo and palliative drugs and reduced to watching movie after movie on the VCR in bed for 3 days.

Today I was queasy, pretty much all day, but never so much that I was worried about throwing up. A Zofran at 9 AM had no effect, acupuncture at 1 PM didn’t seem to do much noticeable right away anyway, ginger beer and popcorn to fill my empty stomach helped a bit, the remedy from last time didn’t do much, and a very strong chewy ginger candy left for me by my mom helped the most, for a little while anyway. I’m still eating, sort of like when I had morning sickness–eating doesn’t make me more queasy, maybe less–and still feeling mildly flu-like. So this is kind of like chemically-induced stomach flu. Hmm.

Aloxi, Tagamet, Taxotere, Cytoxan–ATTaC! Hmmm. Aloxi, Tagamet, Taxotere, Cytoxan, Heparin–ATTaCH.

Aloxi is an anti-emetic, tagamet is to settle my stomach some other way (anti-reflux…it’s an ulcer med?), Taxotere is the new chemo agent, Cytoxan is the old chemo agent, Heparin is to keep my port catheter from clotting up in between uses.

And there’s the Decadron I’m taking at home the 3 days around chemo–so that would make it, what, DEATTaCHD?

It went well–efficient, friendly, we liked the nurse, got to sit on the quiet side of the infusion room, and everything went fine with the various drugs. I got a headache from the Cytoxan, but it only lasted an hour or so and wasn’t very bad. Gave my allergic oncologist advice about how best to use nasal steroid spray, to which he said “thanks, doc!” All in all it was calm and almost relaxing in a way. It is good to get started. Now I’m home and feeling tired but otherwise fine. Ate a nice dinner provided by members of our Quaker meeting…

Last September and October, I found myself crying and crying over stories of Hurricane Katrina–the awful ones, the wistful ones, the happy-ending ones. Of course this was only in the car because One, we only listen to the radio in the car and Two, the car makes a nice private place to cry. This continued from the beginning of September to the middle of October, at which point my mom reminded me that it was almost exactly 10 years earlier that I had had the lumpectomy. Wow. Then I had a real cry, not in the car, and realized that I had found that lump the first few days of September, had it taken out, been diagnosed by surprise the end of September, etc.–in other words, had spent the same time period 10 years earlier getting closer to, discovering, and dealing with having cancer. After surgery it was much easier–the nodes were clean, the course was set, everybody knew–and after that in 1995 I was no longer so close to crying at stories of natural disaster.

A few weeks ago I received a nice big plain red bandanna in the mail from a friend. I also got a lavender one and in the package were two black bandannas with skulls and crossbones on them. (I’m assuming those are for the boys.)

We were in the car. I tied the red one over my head and it was big enough to even make a sort of folded headband in the front and still cover my head. I checked myself out in the mirror and was feeling pretty dashing indeed–hey, this could work! maybe I actually look good this way!–until a five-year-old voice from the back seat of the car said, “Mommy, you look like you’re wearing a napkin. (pause) From a restaurant.”

I am looking at the receipt for 20 tablets of Zofran, an anti-nausea medication that didn’t work very well for me (against the nausea-inducing Adriamycin) in 1995. That’s, what, $37 per tablet?

Nothing much lately has suceeded in making me feel more sick than that $745.25. Who takes medicine that costs that much money? Only really, really sick people.

Or maybe that’s who runs the drug companies…

(I only had to pay $30 for them. So lucky to have health insurance.)

Chemo starts Tuesday midday. TC x 4 plus a Neulasta shot on Wednesday, every 3 weeks. I’ll be done in mid-November (then radiation). I get to take steroids too. Yee. Hah.

Last Tuesday afternoon, late, the surgeon called and left a message: the tumor board had met that day and discussed the re-excision results, and they determined that “everything looks okay” on the margins.

I need to ask for more of the story, but my informants tell me that the radiation oncologist, surgeon, and oncologist confer at the tumor board and go over the slides and decide whether the lab was just being cautious or whether what’s on the slide is worth worrying over (or re-excising over, more exactly). The Dana-Farber oncologist said 98% of the time, when surgeons go back in after a result like that, they don’t find any more cancer cells. But she also said she would ask the DFCI pathologists to look carefully and see if they agreed with her, and would get back to me if they didn’t. None of this information was in the records she got from the oncologist’s office–probably because he didn’t have the information when he sent the records. I’ll be asking him about it tomorrow too.

Friday was my second-opinion visit at Dana-Farber. It was also the birthday of my doula clients’ baby…scheduled for just the day I couldn’t be there for them. I was there to help them get started and there to rejoice afterwards, but my doula partner was there for the labor and birth. Everything went fabulously and everyone is happy, and only I am also very sad. But mostly happy.

The second-opinion appointment was very useful. Judy Garber, the oncologist I saw at DFCI, was really helpful and nice, gave us lots of balanced, nuanced information about chemotherapy options, and told us more about genetic testing and my personal chances of having the BRCA1 and BRCA2 mutations.

Better coverage of the one Taxotere-Cytoxan study: abstracted/presented 2005, not yet published, 1016 early-stage women, all with surgery, chemo, & radiation; those taking TC x 4 had better 5-year disease-free survival rates (86%) than those taking AC x 4 (81%). That’s a significant difference overall, but for node-negative women there wasn’t much of a difference. Overall survival was about the same. Mean follow-up was 5.5 years.

Interview with the principal investigator about the study (scroll down)