Posts by Ellen Harris-Braun

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.

Yesterday morning. My hair has been cut much shorter than usual (1/2" in front, at its longest) but you really can’t tell much difference! I’ll have to buzz it to 1/4" next week, so as to really look startling.

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 kids.)

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.