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?

Yesterday all day I felt so calm and appreciative of the care I was getting, and held up by so many people. Thanks!

It’s morning and I still feel pretty good. My stomach was kinda heavy at meals but no real queasiness, and I wasn’t up too much last night. No headache. Yay! So far so good.

I have been trying to find a good, helpful metaphor for what the chemotherapy is doing inside me: basically, killing off fast-growing cells of all sorts including cancer cells. Not very targeted–lots of collateral damage, leading to hair loss and potentially other side effects. Lots of people agree that visualizing a powerful yet more selective role for the chemo drugs can protect the parts of the body that really don’t need to be damaged (fast-growing non-cancer cells). But it’s hard for me to think of one that feels right–most of the closest metaphors are violent or military. Invading army, going after enemy forces but trying to spare civilians? A selective herbicide like Round Up? Cleaning out the pantry-moth ridden cabinet and having to throw some good food away, just in case, so you get all the eggs (even though you already removed the actual moths)?

Well, you can see maybe why it’s hard to buy into imagining myself wholeheartedly as a pantry cabinet. Even a nice maple-fronted one.

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…

I am thankful for today going so well, especially the nice morning I had before we left home at 11:00. I’m trying to balance that with releasing expectations that tomorrow will go as well–either it will, in which case I will be newly thankful, or it won’t, in which case I will deal. Trying to let go of expectations is hard work!

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.

My back, shoulders, and neck were really, really sore in January and February and March this year. No one knew why–exercise didn’t help, eliminating sugar or aspartame didn’t help (or only helped a little). Now my massage therapist thinks maybe that was my body reacting to the growth of the cancer. “Even if you didn’t know something stressful was going on, maybe your body did, and was showing that stress in your back.” That’s where my stress usually shows up anyway.

When our friend Vicki was dying of breast cancer early this year, and the partner of someone in our Quaker meeting was slowly dying of another cancer, and it was near the one-year anniversary of one of our intentional community members’ death of breast cancer, my attitude was really clear to me: I felt that this illness was all around me, all around my family, my friends, and it was totally random would get it next. As if we were all a herd of deer living our lives, grazing, sleeping, moving from field to woods, crossing roads, and who would be picked off next–by a hunter, a car, a disease–was completely unknowable, at the same time that the fact that there would be a next was completely obvious, just there.

In late March I heard a piece on NPR called “A Year to Live, A Year to Die”–the story of a man dying from brain cancer, told partly via his audio diary and partly through later comments by his wife and then widow. I listened to it in the car alone and cried and cried and wasn’t sure why it was getting to me so much except that it was apparently so horrible for both of them, on way more levels than the physical. I was a little disturbed to be so affected by it and asked my mom and Eric to listen to it, too.

When I found the lump in very late May I had a bad feeling. The weekend after I saw my midwife I was feeling lots of dread in a totally rejoiceful setting (my niece’s graduation from boarding school). Later it wore off, a bit, waiting for my surgical consult appointment, but once I picked up the ultrasound film and report in late June I felt like I was headed for right here, unless I was really, really lucky somehow.

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.

I feel pretty driven to cross all these “t”s and dot the “i”s myself instead of just relaxing and letting these doctors take care of everything. Partly it’s that I want to know, myself, out of curiosity as to how these things work, and because the more I know about how it all works the more comfortable I feel in that world. And partly it’s because I figure that as an alert and curious patient, who only has one case of breast cancer to worry about (okay, two), I better be responsible for my own “minute” details, just in case, rather than leave it to the doctors who have dozens of cases of breast cancer to keep in their heads.

Of course, this disregards that useful invention, the patient chart. But there is always the possibility of miscommunication, lost reports, bad handwriting, whatever. When we told Dr. C., on Tuesday morning, about the newest report on the margins, he hadn’t heard of it yet and was very surprised.

My mom reminds Eric (and me) to doublecheck the IV bags during chemo to make sure the right poisons are in them…

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.

I feel like my field of view on chemo options has opened up a bit, which is good. She said either TCx4 or CMFx8 would be a good choice–both are equivalent as far as efficacy goes, and while CMF has many years of evidence behind it that TCx4 doesn’t have, TCx4 has one recent very positive study and people have been using it, including her, going on the hunch that the evidence will continue to be positive. The T (Taxotere aka docetaxel) has been shown to be very effective in late-stage breast cancer and also to work as well or better on ER-/PR- cancers as on ER+/PR+ ones.

Genetic mutations and testing: she confirmed that whether or not I have the mutations does not affect current treatment at all. She said someone with breast cancer has a 2% chance of having the mutations; someone with breast cancer under 35 has a 10% chance (that was me before); someone under 35 with Ashkenazi background (that’s me) has a 30% chance; and her guess is that if you add another tumor before 40 you are “not quite 50/50, but close.”

So that opens up a whole can of worms, which I am examining briefly and then pushing down into the can again until the genetic testing appointment (9/22) and the results.

She also said that as far as she knows, recurrence risk is not greater if this is a second cancer (which is not what that one study of contralateral breast cancer concluded). I like her idea better.

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)

Systematic review of use of taxanes in early breast cancer (from Australia)