…but the effects will be with me for quite a while.

My first chemo infusion took place on January 29th, 2015. The regimen I was on was AC+T. Altogether, I had:

• four rounds of adriamycin (doxorubicin) and cytoxan, every two weeks
• twelve rounds of taxol, every week (low dose)

Each infusion was preceded by lab work (to check white and red blood cell levels) and a visit with the oncologist.  Many of the infusions were followed by one or three days of injections, Neulasta or Neupogen. These are granulocyte colony stimulating factors – they “help the body make more neutrophils, a type of white blood cell.” I got those shots when the lab work showed that my white cell counts were low – a possible-to-likely side effect with any and all of the chemo drugs I was getting. Not much I could do for the red cell counts except take multivitamins and eat red meat. Some people are given transfusions, but that was not a great option for me.

I had plenty of other side effects, including fatigue, neuropathy, hot flashes, muscle pain, losing eyebrows and lashes and possibly fingernails, etc. – I moaned about some of them in my tweets. The Neulasta and Neupogen also had a fun side effect: bone pain. (As recommended by my doctor, I took clarityn every day – no one knows why, but it seems to alleviate that bone pain, as well as being useful for my seasonal allergies.)

I had the last taxol infusion yesterday. The staff of Valley Medical Oncology Center came out to give me a round of applause and a certificate of completion. Aww. They were all fantastic. Chemo isn’t fun, but having great people to do it certainly helps.

I can expect the side effects I’ve been having to continue and possibly even get worse for another two  weeks, and the taxol will still be circulating in my body for up to a month. Some of the side effects will take 3 to 6 months to abate; I was especially disappointed to learn that I may not get all my tastebuds back for that long. Altogether, it can take the body up to a year to fully recover from chemotherapy. So I don’t know when I’ll start to feel “normal” again.

What happens next?

I can enjoy the next two weeks of seeing no doctors and, especially, not getting poked with any needles (my old favorite vein for blood draws is now scarred and painful, the decent one on the other arm has collapsed and won’t give up anything now).

On June 25th, I will see Dr Patel, the radiation oncologist, to start preparation for radiation. I’ll need a CT scan, and a form will be made to hold my breast in the exact same position for each radiation treatment. Radiation should start about a month after chemo ends, and I’ll have it every weekday for six weeks. Each treatment doesn’t take long, but…

I’m told that radiation can cause fatigue, especially after chemo, but Dr Labban told me that no one is exactly sure why this is; could be that the radiation stimulates residual chemicals in the body, and/or the sheer hassle of having to be there every damn day is tiring. On the other hand, I’ve already had some weeks where, between infusions, visits, and shots, I have had to be in that building every day. As long as I have the energy to drive myself (hasn’t always been the case, lately), I’ll probably get through that without too much trouble. Depending on how tired I still am from chemo by then.

I’ll have a chemo follow-up visit and blood work mid-July, to see whether my blood cells have recovered, which is supposed to happen 4 to 6 weeks after chemo ends.

The port stays in until after my next mammogram (October), just in case something turns up that means it’s needed again (not a happy thought). It has to be flushed monthly with heparin to prevent blood clots forming in it. At least I can look forward to seeing my wonderful oncology nurses, Diana and Mike, for that.

Radiation should end in late August, then I’ll have another month off (presumably to recover) before I see Dr Labban again to start taking tamoxifen; that’s in pill form, I haven’t even looked at the side effects yet. I’ll take that for five years. I’ll be having mammograms and possibly other tests every 6 to 12 months, but I’d have been doing that for the rest of my life anyway.

So… I’ve completed step 2 of a long process (step 1 was surgery). I’m relieved to have got through it (not everyone does), and I guess it was worthwhile to improve my long-term odds. But, as you can see, there’s still a long road ahead of me.

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my breast cancer story (thus far)

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.