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.

Tomorrow looks to be a rainy day at home with the boys while Eric goes to the Schumacher Lectures all day. I’m hoping that after I sleep in I will have energy to parent!

Next challenges after that: finishing up my PowerPoint presentation for the APHA meeting (by Sunday) and sending two class curriculums to Columbia Memorial Hospital to see if they want to hire me to teach there. Next week I’m teaching one private class to a teenage couple and one all-day class to two other couples. I have no pending doula clients, though…!

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.

Again Eric did a visualization for me about the chemotherapy drugs and how to envision them entering my body and reacting with it. It’s not about little attackers killing off cancer cells but more about light and glowing.

I gave Dr. C. (the oncologist) the 17 or so abstracts I’d pulled off of Medline about medicinal effects of certain mushrooms: immunune boosting, liver-protecting, cancer-killing effects. He said “Great, bedtime reading!” (He had sort of asked/challenged me 3 weeks ago to bring him some information, since he didn’t know about them and said he’d rather I didn’t take them during chemo.)

My “liver numbers” were again fine, despite my dangerous practice of taking herbal mushroom extracts and drinking nettle tea. My red blood cell count is down (expected, I think), and my hemoglobin & hematocrit are down too (maybe I can do something about that–I’m thinking herbal iron tonic made by my herbalist/doula/midwife friend Sarah). Yes, I take a multivitamin, and no, I wasn’t anemic before chemo. So it is transient…but if I could boost my Hg & Hct during chemo I would feel more energetic and less tired.

After chemo, while Eric picked up my Neulasta prescription at the drugstore, I went to St. Peter’s Hospital across from the drugstore to visit my doula clients who had their baby early on Monday morning. It was a great birth! And I was home by 6:40 AM. When I dropped by today they were just leaving, after 36 hours in the hospital. One night of hospital care was enough to convince them that they would get more rest at home! Of course the hospital gave them a formula bag, even though this is a third baby and the staff know she is breastfeeding exclusively. Makes me so mad! So I helped them carry their stuff down to the exit and then bopped off to connect up with Eric again. Very convenient and heartening.

Now I’m home and everyone is here (with food) for dinner. That’s my life…

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.

Saturday I spent most of the day sitting on our little porch deck in the sun (or lying on the deck in the sun). Saturday afternoon I realized that I actually had a bit of energy. And I didn’t feel quite so queasy–maybe 80% of before. That was very, very nice. Saturday evening I had more energy–I stayed up and doing things until 10.

I started sleeping with a little knit hat on because otherwise I got cold and woke up over and over. My friend Erika made me the hat.

Sunday I had enough energy to go to Quaker meeting and business meeting afterwards (at which I take the minutes). Then I even went for a bit of a walk. It all felt good. From then until now I’ve been slowly gaining more stamina and energy, though I am still not up to Week 3 levels (we’re in Week 2!). I didn’t develop any of the digestive pains I had from the first round of chemo (gas, heartburn), probably because of the various changes in drugs and other stuff that I worked on between the two rounds. I started taking probiotic supplements on Saturday this time, to recolonize my guts with good bacteria, and I got a different anti-emetic with the chemo and a new one to take the 3 days afterward.

I took Marinol Tuesday through Thursday this time, but it didn’t do anything for the queasiness. However, I think it kept me just loopy enough to relax into being exhausted and not worry myself into a swivet over being so unproductive and lame. So…knowing me…I think that was probably pretty important. By Friday I wanted to see how much of how out of it I felt was due to chemo and how much to Marinol, so I stopped taking it. I got a little less foggy, which was good.

Overall, here’s what happened, then: 5 days of extreme tiredness and constant quease, but no pain, and then up and out into the real sunny world again, slowly. Much better than round 1. Thankfulness was there throughout.

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. 🙂

So you can see my visualization efforts need a little more work. I guess that’s today’s job.

I have already determined that No Work Will Be Done during chemo treatments (even though I’m there for 2 to 3 hours). No catching up on e-mail, no filling out forms, none of that–just relaxing and reading and talking and giving that time over to focusing on me, resting and healing.

I asked the oncologist and my nurse to switch my anti-emetic drugs around this time to see if it can go better for me. So now I will get a new drug today through Wednesday, Emend, that works differently from the anti-emetics that haven’t done much for me. I will get a different anti-emetic along with the chemo (the one I got in 1995) instead of Aloxi, a newer one that might have caused my stomach trouble, and I’m taking Marinol from the beginning instead of Zofran, because the Zofran didn’t seem to have any effect and maybe the Marinol did.

So…we’ll see.