Posts by Ellen Harris-Braun

Sounds great but today, day 3, I feel rotten. So I don’t feel done with anything yet. Although the chemo nurses blew soap bubbles at me when I was ready to go on Tuesday:

Tuesday evening I felt like I had been hit all over with a sandbag (pressure evenly distributed). Yesterday my mind was sharp but I was very tired (not sleepy, body tired) and spent the day in bed as much as possible. Today my mind is fuzzier and I am still tired. Queasiness held off a bit until today, which was nice. It’s not too bad, and my flu-head (chemo headache from the Cytoxan) is worse than last time but no worse than the first two times.

I realized on Sunday that what I’m doing with all these hats and bandannas is covering my head. It feels like covering. What I was doing in 1995 was hiding my head. No one else can probably tell the difference, the times I’m covering my head at least, but I can. What a relief.

There are two ways to go with the work/chemo juggling: you can go full-out, plan to live your Whole Life and make adjustments as needed as you go along–this will keep you feeling safe and normal as much as possible but will be hard work and things will go by the wayside unexpectedly (perhaps just the laundry, the dust in the corners, and the quality of lunchbox fare). Or you can decide that now is your time to lie low, take care of yourself, cut down on work and responsibilities, learn what you need to learn, explore other modes of healing that appeal to you, and do things you never give yourself time to do because of being a creative busy working mom (like read novels and hang out with friends? if you’re me).

Sunday was a henna party. Here is my head (done by Arti and Meg):

Lately I keep facing this choice. Will today be a breast-cancer day or a regular day? Some days I don’t have appointments, feel all right, don’t do research or talk to other people in the cancer world, read novels, and get my “regular work” done. Other days I look things up online, let myself explore new Web sites that might hold useful information of one sort or another, read cancer-related books (see “bibliotherapy: sick”), talk to other people facing what I’m facing, make or go to appointments, and/or feel bad. And I am never quite sure which day I’m going to have, at least on a non-appointment day. Sometimes I get sucked in, sometimes I resist, other times I tell myself it’s useful and helpful to just go with the flow and follow my impulses as to what the spend my time on. I guess my goal is to prioritize the important breast-cancer stuff while not becoming a full-time obsessive breast-cancer junkie; and meanwhile, to get the “regular work” done on a reasonable schedule. All while not stressing out about either one.

It’s Friday night after chemo on Tuesday. Today I took the exam to be a Lamaze childbirth educator, which was administered in Springfield, MA. My excellent friend Lisa drove me there and back, which was key to making this crazy plan doable. The exam itself was fine–all multiple choice, on a computer, felt like a quiz game–except that when it first came up it was in Spanish. That meant over an hour’s delay while the testing center downloaded the correct test. So I was pretty tired by the time I finished and we drove home. I spent the rest of the daytime in bed reading (The Time Traveler’s Wife, excellent) and got some more energy at about 8:00 at which point Lisa and I did some henna on each other. Now it’s bedtime and I’m not feeling too bad–less queasy, and overall the flu-like headache hasn’t been so bad this round.

Today was my chemo-spa day again. We ran around ahead of time trying to get stuff done, but I did have time to do my mediation practice and have my flax-oil smoothie for breakfast. New York Oncology Hematology was really busy…more busy and behind than we’ve ever seen it. Apparently yesterday was even busier, at least in the chemo infusion room. Our nurse Amy (who again wasn’t our nurse this time–rats!–but she snagged us a seat near her desk again) said she had 27 patients yesterday and she usually does about half that in a day. So we got started with the chemo an hour late, almost, and didn’t finish until nearly 3:00. That was okay, because I don’t find the chemo infusion itself stressful and I don’t really mind being there. I never take work or catch-up stuff (bills, etc.) or my computer, so I just talk to Eric, read books, talk to the nurses, and relax.

I’m back from Baltimore and it’s the middle of week 3 of my chemo cycle, so I am busily trying to DO STUFF before next Tuesday. There are many things that need doing before the end of the month, and I’m assuming that Tuesday through Saturday or Sunday next week I won’t feel much like doing them. So, in an ironic turn of events, I’m finding myself piling on the to-dos this week, and feeling anxious about not getting them done, in an attempt to give myself a break next week (and not feel anxious about not getting things done).

At the MANA conference’s closing session I began my career of wandering around bald with no head covering. As we stood in a huge conference-hotel ballroom in a large (250 people?) circle, I was kinda daring myself to take off my bandanna. After a while I said to my friend Wendy, “I could take off my bandanna. What do you think?–No-no-no! I shouldn’t ask you what you think. I don’t care what you think.” Then I said to myself, “Oh, how hard could it be?” so I took it off.

Then I got many hugs and kisses upon my head. That was gratifying. I showed off my head until we went out to dinner.

Looking for dinner, we walked through the Inner Harbor area (stores, restaurants, many tourists) and Wendy asked, “Do you care that people are looking at you because of your head?” I said, “Are they? I hadn’t noticed…so I guess I don’t care.” That was interesting. We had been having a good conversation so I just hadn’t paid a bit of attention to peoples’ reactions to me–a lack of self-consciousness that felt very unusual for me.

Since then I haven’t really held at the forefront of my mind how people will react to me and my bald head (covered or not). Now (in my ongoing evolution as a bald person) I don’t really care much whether my head is covered or not around people I know and like. If I’m cold, I have something on my head…if I’m hot or itchy, I take it off. Sensible, no?

Tomorrow I am going to Baltimore for the MANA conference (that’s Midwives Alliance of North America). My hats and bandannas and I will be home Monday night after going to presentations, giving a presentation, going to the Division of Research meeting Monday, and hanging out with my MANA friends throughout, which I greatly look forward to. Perhaps there will be henna.

Oh! I made a first experiment in head henna with the help of my friend Arti. Here is a picture. The sexy hennaed forearm is Eric’s.

After chemo last Tuesday, my awesome nurse Amy suggested we try to call in a prescription for Neulasta and see if my insurance company would cover it that way and give it to me for $50 (my highest drug co-pay). Then my doctor in Chatham could stick me with it on Wednesday and I wouldn’t have to come back to Albany for a 3-minute appointment.

The CVS down the street from Albany Med had a dose to prescribe for me…we went to pick it up…it cost $50. List price on the receipt: $2856 or something. We took it home and put it in the fridge, and the next afternoon Dr. Jeff in Chatham did the honors and I paid him the usual $25 co-pay. The instructions for the Neulasta said, and I kid you not, “Remove injector from carton before injecting.” They don’t mess around telling you exactly how to use such expensive medicine, I guess.

So: round 1 Neulasta? Over $6,000 all told. Round 2 Neulasta? $75 total.

Health insurance is so deeply weird.

And Dr. Jeff points out that New York Oncology Hematology is criminal for charging that much for a drug. After all, it only costs $2856. How do they think they can get away with charging over twice that much? (See previous paragraph for the answer.)

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!

The past few days have been wonderful, despite my hair coming out gradually. Luckily, we really do have thousands and thousands of hairs on our heads. It doesn’t look like it’s thin yet (except to me).

I attended a great birth on Friday, a day when I had lots of energy and no plans I had to cancel. Our friends had a whoppin’ baby after only two hours of hard work–and a lot of fun labor time before that–and my niece and I (she was doula’ing too) got home by midnight. Everyone is happy. I am very happy not to have had to miss that one because of chemo or something else…triumph!

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.

I have felt good for the last week and have been often pretending the world of the sick has nothing to do with me. Except for some web research in an attempt to figure out how better to manage the queasiness next round. I haven’t been thinking much about the larger issues of getting rid of breast cancer, so I haven’t had much to add here.

Oh, but we did go to the initial genetic-testing appointment. More on that later. It was more of a dis-appointment.

This morning’s radical haircut.