So… about hair.

Turned out that the anticipation of losing it was much worse than actually losing it.

Before even starting chemo, I went to a shop selling wigs, hats, and prostheses for cancer patients. They advised me to try on wigs then, because, even before hair loss begins, your scalp gets so sensitive that you don’t want anything touching it. (This turned out to be true.)

So I tried on some wigs, and bought one that could pass for a hair cut and color I might actually have had sometime. I have not worn it yet, except briefly to play around and to show people. Before seriously wearing it, I would have to get it professionally adjusted (I have a fairly small head) and trimmed so that the bangs aren’t constantly in my eyes.

But at this point I’ve concluded that I may never wear a wig in public, for several reasons:

• A wig is basically a tight mesh cap with artificial hair on it. It fits around my head such that its elastic edge has to be over or under the earpieces of my glasses. Either way is uncomfortable and/or distorts my vision, because my glasses no longer sit correctly on my nose. (Yes, I should have figured this out before buying it.)
• Wigs make your head HOT. And, thanks to both my age and cancer treatment, I am now having all the symptoms of menopause, especially hot flashes. I can go from shivering to sweating in 30 seconds. I am constantly adding or removing layers, including hats. I suspect I wouldn’t manage to keep a wig on for very long. Like Samantha.
• I don’t have any practice wearing wigs. I would probably keep fiddling with it in a way very distracting to myself and everyone around me. It would just bug me.
• I’m not used to having hair anymore. The times I’ve tried on the wig, I was immediately irritated by hair falling on my face and getting into my eyes. It’s liberating not to have hair. If it were purely up to me, I might quite happily stay bald. But… a bald woman freaks people out. (Did you know that Sinead O’Connor originally shaved her head to avoid sexual harassment by record producers?)

I can imagine wanting to wear a wig, for the reason Jenny Allen mentions in this monologue: even though it’s obvious to most people that you’re wearing a wig, and they may guess that it’s to do with cancer, wearing the wig is a signal that you are trying to pass for and want to be treated as a “normal” person at this moment, and probably don’t want to talk about cancer. Whereas wearing a hat or going bare is something of a statement. And then you might have to be a cancer evangelist at a moment when you don’t have the energy or resilience to talk about it.

So far, the times I’ve been out in public, I’ve been wearing a cancer hat, and almost no one has said anything about it. I seem to get unusually attentive service in grocery stores (which is nice – the people at Trader Joe’s recognize me and say they’re glad to see me again). Another shopper at TJ’s said to me: “I went through that a few years ago.” “I’m glad to see you’re still around,” I replied. (She had great, thick hair again, too.) Beyond that, I’ve had a few pitying or worried looks. Common as it is, cancer still scares people.

Losing It

But, before I got so philosophical about it, I had to face the anticipation of losing my hair, and that was very upsetting. I had been warned by the literature and the medical people that It would start to go around Day 14 of the adriamycin. Already on Day 5 (Feb 2nd) my scalp became sensitive to a hot shower.

By February 14th, I was brushing out large amounts of hair:

The photo at top, of my pillow, was taken the next day. It was both depressing and annoying to be shedding like a Labrador, and having to clean up after myself with a lint roller and vacuum cleaner. That was the day I had Brendan buzz off my hair (not too short) with clippers:

But it soon began to look ragged, and, as I learned, a newly-balding head is not a smooth, shiny dome:

I don’t know whether the irritation was from chemo or dandruff, but… eww. (It cleared up quickly, since then I’ve had plain scalp shining through).

Not long after, we buzzed it off even shorter:

My hair continued to fall out. I ended up with some shiny bald patches, but so far I haven’t gone totally bald. Which was actually something of a disappointment: I wanted to do a henna crown. My second chemo regime is taxol, which reportedly can also make you lose hair, but the chemo nurses told me my hair might start to regrow during this treatment. As far as I can tell, it is no longer falling out and is growing back, but very slowly. At this rate, it will be many months before I can pass for simply having a very butch haircut (which wouldn’t be a first for me).

Various tweets about hair covered in my Chemo Roundup: February.

As for the hair elsewhere on my body… my pubic and armpit hair started coming out about the same time my head hair did. Like my head, those areas never became entirely bald, but the hair is still very sparse. I used to shave my lower legs daily. Since chemo began, I’ve shaved a few times, but my leg hair also grows back very, very slowly, and very thin. So, altogether, I’m saving a lot on depilation this year!

I still had eyebrows in late March, but they were mostly gone by late April. Now I seem to have a few thick hairs growing back, also slowly. Some people, in the aftermath of chemo, grow Groucho Marx eyebrows. That would be fine – I could always have them thinned and shaped. But I’m not coordinated enough to draw on non-existent brows with an eyebrow pencil!

One of the side effects of chemo is preternaturally smooth skin. So I have big eyes, a big dome of a head, no lines in my face, no eyebrows, and no hair. Yes, I look like an alien, or a baby. Or, as my daughter said, like Dr. Evil:

I don’t look at myself in the mirror much nowadays, but… I never did before, either!

June 12, 2015

My head, pubic, and axillary hair all seem to be growing back, slowly. Hard to tell what color my head hair will be; so far most of it seems to be as fine as it ever was, overall pale but not silver, though there are some silver hairs and some darker patches. My pubic hair is coming in whiter, but the early growth is not firmly rooted. Axillary hair is sparse and dark (as before).

I am unhappy to note that my eyebrows are getting even more sparse, and now my eyelashes are starting to go.

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my breast cancer story (thus far)

It somehow works out in my life that, no matter what kind of crisis I’m experiencing, I have expert advice available among my circle of friends. One such is Shridar Ganesan, who became a friend long ago when he married Mithu, whom I’ve known since our study abroad year in Benares, even longer ago.

Shridar is a physician and breast cancer researcher. When my mother-in-law got breast cancer in 2001, he advised us long-distance on the diagnosis and treatment that she was given; it was also he who recommended Dr. Susan Love’s Breast Book at that time, which was why I immediately bought it (again) when I received my own diagnosis.

I also immediately emailed Shridar and Mithu, from Paris, with the subject line: “My turn.” Their counsel and support throughout this has been hugely important – it’s been comforting to have a second opinion on the physicians I’ve been working with and the treatments they have recommended, and to have further expert information about what’s going on with me. Shridar and Mithu: Thank you both!

Jan 15, 2015: Had an echocardiogram this morning, to get a baseline on the condition of my heart before starting chemo because, as the technician said: “Chemo and the heart don’t get along so well.” He was from Byelorussia, and we chatted about traveling in that region. “Russia, Ukraine, Byelorussia all ok, but in China – they’ll just make you disappear!”

Then bloodletting and “chemo teach” at the oncology center. The potential side effects of all the drugs are very scary. The one that disturbs me most is possibly irreversible peripheral neuropathy from Taxol. Discussed it with Shridar, he suggested a series of lower weekly doses over 12 weeks instead of 4×2 weeks.

Having to learn about cancer is emotionally exhausting. Brain just wants to shut down. Not something I ever wanted to develop expertise in.

— Deirdré Straughan (@DeirdreS) January 23, 2015

Port

Jan 20 – Port placed. I don’t remember the first half or so of the procedure – as before, Dr Mirza said he was giving me something to relax me, and things pretty much went blank for a while. When I came to, the world was blue. They had told me they would be putting sheets all over me, so that was not a surprise. I was immediately uncomfortable; there seemed to be a roll of towel under my spine, and my left shoulder was twisted back and held with the shoulder blade tucked under, exacerbating a pain I often get from sleeping “wrong.” Eventually I asked them to remove the towel under my spine, but the shoulder was unpleasant until everything was finally done.

I could hear Dr T being not entirely happy with the placement of the port. Eventually, after an x-ray (routinely done right after the port placement anyway, to ensure a lung has not been punctured by the end of the catheter) and a CT angiogram the next day, it was concluded that the port could have stuff put into it, but not aspirated out – not a big problem, apparently. Dr T advised Dr L (the oncologist), and I told the oncology nurse about it before starting chemo, so everyone knows what to expect.

Hours later, this is pretty fucking painful. Hope the Percocet kicks in soon.

So this becoming a cyborg business is painful. Hello, percocet…

— Deirdré Straughan (@DeirdreS) January 21, 2015

Having a lump of titanium under your skin and a foot of catheter through a vein takes some getting used to. At first the port slid against the underlying tissues in a very creepy way. The pain was mostly in the shoulder. When I saw Dr T for a follow-up six days later, she said I should have been taking ibuprofen for inflammation, instead of acetiminophen for pain. That helped, plus some mild yoga and turning my uneven mattress around gave the joint some relief. New, fancier mattress coming from Ikea next week for precisely this reason.

I now have a titanium port implanted in my body – that makes me some kind of badass, right? https://t.co/xC4XjM8Mpn

— Deirdré Straughan (@DeirdreS) January 21, 2015

The product leaflet insists that “the color purple” is a trademark. Umm, ok. I thought it was a novel.

— Deirdré Straughan (@DeirdreS) January 21, 2015

Let’s hope I never have to have serious surgery. I do not deal well with pain, in any amount.

— Deirdré Straughan (@DeirdreS) January 23, 2015

I guess having a lump of titanium and a foot of tubing inside takes a while for the body to get used to. Something feels weird and creepy.

— Deirdré Straughan (@DeirdreS) January 25, 2015

Jan 26 – Met with Dr L. Rescheduled the infusions for Thursdays, so that (I hope) the fatigue will hit mostly on weekends. When we talked about side effects and my concerns, he suggested the lower-dose taxol, as Shridar had, so we’ll do that. Which drags the chemo out to 8 + 12 weeks, but worth it to lessen the chance of irreversible neuropathy.

Jan 27

• Melinda B sent me this.
• Teresa sent this.
• Ross sent Wigs, Wigouts, and Insurance.

photo top: What the port looks like four months after placement. It has slipped a bit below the original incision, I assume pulled by the weight of the breast. Note that the port is placed on the opposite side to the breast that had cancer.

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my breast cancer story (thus far)

At a loss for words when someone in your life has a serious illness? Yes, I know – it’s really hard for both parties. These cards express some of the best, most honest and loving reactions I’ve seen yet.

I departed the US on December 16th with a huge, dark question hanging over me: would I need to do chemotherapy? My oncologist, Dr L, had explained that the Oncotype Dx test gives a score of the statistical likelihood of your particular cancer’s recurring, and whether chemotherapy and/or radiation will affect that likelihood. If your score is 19 or lower, chemotherapy is not likely to do you much good. 19-30, you’re in a gray zone. Given my relatively young age, I thought I’d probably opt for chemo if my score was in that range. A score of 31 or above is an unequivocal “Yes, you should do chemo.” I was waiting to know that number.

We arrived in Sydney on December 18th (local time), got through immigration and customs, and picked up our rental car. As we drove across the Sydney Harbor bridge, I called Starr, Dr T’s assistant. She had the oncotype results in her hand, about to fax to Dr L. My score was 31, an unambiguous result: I should do chemo.

That news was not how I’d wanted to start my vacation.

Over the following days, I made and received multiple phone calls and emails as I started to understand and organize what would happen to me for the next six months. Here’s what I wrote about it at the time:

Dec 21

We arrive back in the US the morning of Jan 14th. Jan 15th I will have an echocardiogram and then some blood tests and “chemo teach” at Dr L’s office. Sometime that week, Dr T will put a port and catheter into a vein in my chest. There has to be a port, because one of the chemo drugs, Adriamycin, causes bad burns if it comes into contact with skin, so you can’t administer it via a normal I/V. The port needs a few days to heal, then chemo can begin: 8 two-week cycles, followed by 6 weeks of radiation. So I’ll be under treatment until mid-to-late June.

I don’t yet know what to expect from chemo – Dr L doesn’t commit one way or the other, probably because individual reactions are unpredictable. He says I could perhaps work, especially during the second week of each cycle, but I’ll probably get too tired in the last 4 to 6 weeks of the overall chemo program. On the other hand, it doesn’t seem necessary for me to pre-emptively take off the entire 4 months – “Some women have done that, and gone stir crazy.”

For a long time, chemo has been my worst nightmare. I used to think: “I have all this other health crap, but at least I don’t have cancer.” Then, when I had the biopsy in 2007, I didn’t think I would die (if I even had cancer), but I knew I didn’t want to do chemo. With this one, I kept hoping it wouldn’t come to this. But it has.

I’m not any more resigned to it now than I ever was. Maybe it will be less scary once I’m actually in it. So far I’ve survived an awful lot of shit that life has thrown at me, I guess I’ll survive this, too. But… I’m terrified. I finally broke down and cried about that the other night. It helped a bit when Brendan admitted that he’s scared, too. I’m not sure exactly why that was comforting, but it was.

A few people have told me that I’m brave to talk publicly about having cancer. Just as people have previously said that I’m brave to write/talk about other topics. I don’t see what’s brave about talking. I don’t see how I could really hide that I have cancer, so why try? It is indeed very common these days, so maybe the best thing I can do for others is to talk about it.

I have the impression that many people write about their various illnesses, including cancer. But I don’t want my life to be about cancer from here on. There is so much more I want to do. And I’m scared I won’t get the opportunity.

Dec 25

I can’t really concentrate on anything, don’t have the mental stamina to focus. It still takes so much energy, sometimes, to not be screaming with terror.

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my breast cancer story (thus far)