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.

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.

And somehow I was kind of hoping that it would last longer…that I would get lucky. Luckier.

Funny how hard the baldness thing is for so many people. I guess in some ways it would be less of an issue if it were SUCH a big issue that I ran out and got a wig and wore it every day. Well, maybe not. It is such a marker of illness, though, and not possible to really hide unless you’re willing to wear a very uncomfortable itchy wig. Which I am not. It’s the shock to myself that is hard to bear, not just the shock to everyone else.

I have thought a lot about the shock to Will and Jesse, since their mom being bald is probably the biggest sign they will see of this challenge we are all going through. I started telling them that it would happen long ago, when I explained about the very strong medicine I would have to take. They got into pirates this summer so we did a bunch of bandanna-tying and have acquired a useful collection of bandannas. I have shown them the couple of new hats I’ve gotten. And I told them maybe they could color my head with washable markers.

Last time I got used to being bald. I lost my head hair, then pubic and armpit hair, and near the end of chemo I noticed my (very thick) eyebrows were thinning out–but I didn’t lose them or my eyelashes. None of it was fun but I learned to not stay saddened by it. This time I’m hoping to find moments of even, maybe, enjoying it. I am wiling to stand out a little more these days than I was in 1995.

But the expectation of my appearance changing from “passing” to “chemo victim” in the next few days is hard. It’s a great privilege to be able to choose who I share my world-of-the-sick status with and who I don’t, and I am about to lose that privilege for the next three months or so.

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.

The upshot was that we went ahead and signed the consent form and I gave a bunch of blood samples for the testing, as I knew I probably would. There is only one company that does this BRCA gene testing. They will first look at three specific locations on the tumor-suppressing genes for the common Ashkenazi mutations (this is called multi-site testing). If there are none, then they’ll look at the whole gene for other mutations. Results of at least the first test will be available in about three weeks.

When we went to see Judy Garber at Dana-Farber (near Boston Harbor) she spread out the following odds for us:

Breast cancer–2-5% chance of having the BRCA1/BRCA2 mutations.
Breast cancer under 35 (which I was the first time)–10% chance.
Breast cancer under 35 with Ashkenazi background–30% chance.
Breast cancer twice under 40 with A. background–“almost 50/50 chance.”

This doctor, though not nearly so precise, said with my list of risk factors (including an aunt with ovarian cancer, which is related) she estimated the chance of me having the mutation at 70 or 80%. Whoah.

And as always, I figure if I don’t have a known mutation I probably just have one that no one is checking for yet. How else to explain this? Surely I don’t have that much need for growth of character.

Once we get the results, we may go back to Dana-Farber or to an actual counselor for discussion of the next steps, which may well include removing the (a.k.a. “my”) ovaries and a bilateral mastectomy, eventually. There is a 70% risk of ovarian cancer over one’s lifetime if one (okay, “I”) has the BRCA mutation(s). Neither Eric nor I feels confident that this doctor that we saw Friday is the person who can help us make those decisions!

This morning’s radical haircut.

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.

It costs around $2,800 a shot. I am tempted to leave a lot of white space around that sentence to emphasize the shock value, but I’m trying to get over it. So. Onward. It was recently approved by the FDA for chemo regimens in which there is a 17% chance or more of a fatal infection. I think this TC regimen has a much lower risk of that. Which brings me to wonder–having recently been informed that our health insurance only covers 60% of chemo and labs up to $10,000 billed–is this fancy-dancy shot covered by our insurance at all? Gotta find out. Not that I won’t be taking it, but I’d rather find out myself that we’re paying that cost than get told the news when I’m not braced for it.

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.

Sunday meetings were from 9:30 to 5:30, and I did fine. I even noticed at 4:00 that for some strange reason I wasn’t queasy! I took advantage of this and went for a walk in Valley Forge park after the last meeting, but by the middle of the walk the quease was back. That evening Spee and I had dinner and hung out in our room reading (me ignoring my nighttime knee ache) and then went to sleep.

Monday morning I felt good for about 20 minutes. All I could think of that I felt like having for breakfast was a smoothie, but since we were on the East Coast there was no Jamba Juice in the giant malls that surrounded the hotel. Too bad. We started home. In the car I called the oncologist and reported on my 6 days of queasiness, to which the nurse, Amy, said, “Oh, no, you’re going to be one of the sensitive ones!” Boy, did that make my heart sink. The oncologist suggested heartburn medicine because he says it’s all linked, so I started on that Monday afternoon. We stopped in Saugerties for a bowl of soup for lunch with my friend Johanna. I didn’t feel good enough to drive unless I had to, so Spee drove the whole way. Once I got home I hit the bed, and Eric and I tried various remedies for the queasiness but nothing worked. Meanwhile this gas pain thing was really getting to me. And my knees started their thing. Finally we went to sleep…

Tuesday I woke up and felt good for–hmm–just enough time to take a shower, get dressed, and start making the boys’ lunchboxes. After that it was gut pain and queasiness again. But actually, the quease may have been a little bit better. In the morning Eric called the oncologist again and I talked to Amy, who told me what gas medicine to buy and also said it was time to try Marinol (the pot pill, which is THC or whatever in sesame oil in a weird looking little round brown gel capsule). Spee got me the chewable gas tablets, which seemed to help some, and also some homeopathic remedy from our massage person, which didn’t seem to do much (I tried that first). I made myself some wickedly strong ginger tea (actually decoction, I boiled it) for the queasiness. Eric picked up the Marinol prescription on his way to the airport to get his parents (they’re visiting), so I took one in the afternoon and didn’t notice any side effects (such as, as it says, “an exaggerated sense of wellbeing”) except a few hours later, a bit of dizziness when I lay down and closed my eyes. It might have worked somewhat. I took another one this morning. So last night was not so bad–intermittent gas pain and not much quease. I had a bowl of ginger-carrot soup and some oatmeal for dinner–a regular meal! And my knees didn’t ache.

This morning I feel better, so far, though still queasy. Flu-head is a little better. It’s day 9! So now I am taking three medicines for side effects of chemo: heartburn medicine, Marinol, and the gas tablets. I could be taking ibuprofen for my flu head, too, but it doesn’t seem to help, so I haven’t been bothering. I am hoping that this one-two punch of queasiness and then gas pain can be overcome next round, or at least the gas pain, which I assume was caused by my guts not quite working right due to chemo-induced cell death of various kinds. Maybe the Marinol will help with the quease more if I take it right from the beginning.

My real fear at the moment is that this level of queasiness–about how I felt Wednesday and Thursday last week–is not going to go away at all between treatments. A week is as long as Amy the nurse has seen side effects last on this chemo regimen. I don’t know how I would handle it if I felt like this every day from now until the end of November.

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 made lunch for the boys and a flax-oil-containing smoothie for me, mailed my Lamaze application, visited my doula clients with their 2-week old, ran an errand for Jens on the way, and at least showed up at the farmhouse to make some decisions and inspire some progress on the tiles. Then I finished reading Grace and Grit (see Bibliotherapy: sick). Tomorrow, if I’m still feeling this reasonable, I’m going to the CABC board meeting in Pennsylvania, via car with Spee. If not, I get a weekend at home to feel better. Whichever happens, happens!