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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.

What I’ve done for the last few days/plan for the next few days:

Last Thursday: doula visit Friday: birth Saturday: family outing, then be useful to a friend because of being a “birth person” Sunday: postpartum visit to Friday’s new parents Monday: initial meeting with potential doula clients Tuesday: work on doula-client filing system, fill out doula forms, revise handouts Wednesday: visit birth center with Kristin and Pat Thursday: ? maybe revise those handouts I didn’t get to! Friday: come along on prenatal visit to Natalie’s doula clients

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)

I am still waiting for my doula clients to have their baby (the due date is today and the mom is 3-4 cm. dilated already) so as usual I’m juggling the various places I have to be, carrying my cell phone and birth bag around, and hoping the baby arrives before Friday or after.

I have loved working with this family (since June) and put a lot of thought into what I should tell them about my situation. I didn’t want to stop being their doula…I didn’t want to hide from them the fact that I would be less available to be at their birth over July and August…and I didn’t want to lay my breast-cancer burden on them and have part of their birth worry be about me. Births are not about me, and having clients concerned about me rather than the other way around just doesn’t feel right.

I had my first surgery when I had already planned to be away, and when they were a month from their due date, so I waited to tell them anything until after that, when I knew more. About a week after the surgery I met with them, along with my main backup doula, and at the end of the meeting told them that I needed to have some surgery and would be unavailable another stretch of days besides my vacation week (which they already knew about). I didn’t say what kind of surgery and clearly gave off no please-ask-me-what-it’s-all-about signals, though I’m sure they wonder.

To schedule the re-excision, the surgeon gave me a range of reasonable dates. I picked the surgery date I thought gave me the best chance of still being at their birth–the earliest date I could get (which suited my other scheduling needs too). After vacation, I met with them again with my other backup, so they would know them both, just in case. This doula was going to be on call for them during the re-excision days, since my primary backup for this birth was on vacation that week.

Three or four days after the re-excision, I was feeling pretty good and ready to go to their birth. The moon was full, their toddler had predicted the baby would be born right then, and I was ready…but no baby. Now it’s a week later! And I’m talking to them every other day and working out backup coverage for the hours I will be in Boston on Friday. I guess this challenge is at least diverting…

I haven’t told them any more details of anything going on with me–and when I’m talking to them, thankfully, I enjoy so much focusing on them, and I don’t even think about myself or this whole cancer thing. It is a full-consciousness break from the world of the sick, somehow, and further confirms for me that this work, supporting women and families in pregnancy and birth, is what I need and want to be doing.

I feel pretty clear that telling them what I’ve told them so far is the right thing to do, from the doula perspective, but I can see how it looks paternalistic (maternalistic?). I think I will end up telling them afterwards, when my postpartum visits with them are over. Assuming they are curious–if not, I won’t bring it up, I don’t think.

I spent so long trying to figure out what felt the rightest to do in this situation–I hope in the future I can arrive at the same level of comfort with a conclusion by a shorter, less thought-consuming path.

Last Thursday I tried to get a second-opinion appointment at Dana-Farber with the breast oncologist most recommended by Dr. C., my oncologist, and was told she didn’t take walk-ins, only special requests by other oncologists. So I asked Dr. C. to contact her. He did, she said yes by e-mail on Saturday, and I have an appointment at noon on Friday. So I guess I’m feeling special.

I keep puzzling over what, exactly, requires my actual presence in this second-opinion process (Eric says I should just reread my mom’s book for the answer). I may have questions for her, but in terms of what she needs to know about me, exactly why do I need to show up in front of her? Nevertheless, I’m going. We’re going.

Yesterday Dr. P. the surgeon called while I was out school shopping with Will. She said the final path. report from the re-excision showed “a single minute group of atypical cells consistent with ductal carcinoma,” only showing on the permanent (staining?) and not the frozen section analysis (that they did while I was in surgery).

Yeesh.

She said she’d talk with Dr. C. the oncologist on Tuesday and get back to us with what they thought should happen next. We assume this means that more surgery is not a given. What does “minute” mean? Is this classed like in the nodes, “microscopic” and “submicroscopic” with the latter kind of not counting? More to learn…

…between chemo treatments.

September 17: CABC board meeting in Valley Forge, PA

October 13-15: Midwives Alliance of North America conference in Baltimore (I’m presenting)

November 8: 15-minute presentation at the APHA in Boston on our MANA statistics Web system

November 11: nephew Jacob’s bar mitzvah in Madison, WI

November 22-26: Family Thanksgiving celebration in San Rafael, CA

Am I nuts or just stubborn?

Here is what my oncologist is leaning towards: taxotere/cyclophosphamide

because “TC (docetaxel/cyclophosphamide, 4 cycles) has a superior disease-free survival compared to standard AC (doxorubicin/cyclophosphamide) in 1016 women with early stage breast cancer.”

I like that 4 cycles. I would be done by Thanksgiving.

On my way up and down the elevator from Nuclear Medicine the day before my first surgery, the doors kept opening on the 5th floor, where there was a big bright cheerful sign:

Morrell Center for Childhood Cancer and Blood Disorders

Every time, I kept thinking, thank goodness this is about me and not them.

I don’t like being the center of attention. I don’t like giving people bad news. This is not a good recipe for someone who has to go around announcing that she has breast cancer again. Silver Bay, where there were maybe 50 people who needed to be told, was getting a bit agonizing.

Hi, how are you? Oh, I’ve been better.

Eric told a few people. I told a few people. Spee and Sandy mercifully went around telling some of our friends so I wouldn’t have to…what a relief! I felt so taken care of.

Here is a timeline of this summer’s breast-cancer adventure:

Late May: found lumpy area in left breast. This was only the second time since my first breast cancer in 1995 that anything had worried me–and the first was in ‘97 or ‘98.

Early June: went to midwife for annual exam, she agreed area felt worrisome, said to wait a couple of weeks and then (if it didn’t go away) get an ultrasound and a surgical consultation. Waited 6 days, didn’t want to wait anymore (I’ve never had cyclical lumpiness), scheduled ultrasound

Good question. Given my reaction to blogging, nothing but something unusual and prejudice-shaking would bring me here. That something seems to be breast cancer, for the second time in my life, just before my 40th birthday. Though I have been sending out periodic e-mail updates to a large list of family and friends, there are some musings I haven’t wanted to deliver to peoples’ In boxes yet still thought some people would want to hear. Not sure yet what exactly I am up to, but capital letters are sure making me self-conscious.

So one thing I realized I’m feeling, overall, is that there are these two worlds–the world of the well and the world of the sick–and I slip from one to the other all the time. Maybe slip down into one from the other in a big way, too, with this scary diagnosis, and emerge later…next February?…back to the regular world again. Maybe the cycle is bigger–every 10 or 11 years?

Everything is chugging along in life and breast cancer is far behind me, making me an interesting and maybe more evolved person, but certainly not part of my personal day-to-day life, and then suddenly the ground opens up and I’m back in the hospital-doctor-surgery-Vicodin-recurrence percentages-chemotherapy drugs world with all the other scared sick people.

Here is where my reaction is kind of interesting. When I’m in the world of the sick, I feel relatively well and lucky, especially to have the partner I have and the family, friends, and community we both have holding us up. Not to mention having a curable disease, and being smart enough to learn what I want to learn to feel like a part of my own care. And finding good doctors who will talk to me and answer my (sometimes overly intellectual) questions, and perhaps even enjoy doing so. So it is somehow less complicated and less depressing to be in the world of the sick. Plus, priorities are pretty clear there.

Then I surface back into the world of the well where I am Greatly Impaired all of a sudden. Have I just had surgery and am on painkillers and have no energy? or am I just tired, distracted, worried, and wanting only to either Fix Things, Learn Some More, or read an escapist novel? Either way, I’m feeling Not Normal and being around normal people, living their life in the world of the well and not even being conscious of the world of the sick, really makes me feel pitiful. I feel like I don’t fit in at all anymore and have nothing to talk about–at least with people who don’t know what’s going on with me. And with the people who do know, sometimes I want to talk about it and sometimes I just want them to know, so we don’t have to talk about it.

This slipping back and forth is hard to handle. It’s also hard to explain why a trip to the oncologist is easier to deal with, for me, than an afternoon at the beach.