One Month Post-Chemo

I had my last chemo infusion on June 11th. Side effects I’m still having:

Eyes watering, especially when I first wake up. This is starting to abate: I no longer have tears streaming down my face every second I’m outdoors. Some women on have reported that this clears up about 6 weeks after the end of chemo. Apparently it has nothing to do with having no eyelashes.

Weight. I weighed 145 pounds when I started chemo, weigh 143 at the moment. Lowest it got was 138, in April. At the worst of the chemo, I was eating less food by volume (smaller meals), but more calories, because fatty foods were the only ones that still tasted ok.

I wish I’d taken off a few more pounds while it was easier to do so, because I have read that when you’re on Tamoxifen (as I will be for five years, starting around September) you tend to gain weight and it’s very hard to lose. But I’m under orders not to lose weight during radiation, so as not to change the mass of the breast they will be zapping. In fact I’ve already lost a few pounds again since my first radiation pre-visit. I’m not dieting as such – I’ve just returned to my normal, generally healthy eating habits.

Neuropathy. Seems to have plateaued a few weeks before the end of the Taxol treatments, and now may be getting better. Recently I’ve had a lot of new tingling in my feet; I wonder if that’s my nerves recovering from damage. My cheeks (the ones on my face) and sometimes my thighs feel numb or tingly, which I only notice when something touches them, but it’s a weird sensation.

Hot flashes. Ugh. Awful. And I’ll probably have them for years.

Hair. The hair on my head is growing back, so far pale, straight, and fine. It feels soft and fuzzy, and apparently tempts to others to pet it. Which I don’t mind (if they ask first). Hair elsewhere on my body is fine, sparse, and pale. My brows and lashes are still falling out, though, now almost entirely gone. Why do those hairs fall out on a different schedule from all other types of hair? And when will they grow back?!?

Skin. All over my body, my skin is softer and smoother. But, from the inside, it often feels greasy and uncomfortable, especially where clothing touches it. I can’t tolerate stiff or non-breathable fabric. Good thing it’s summer so I can wear shorts and light clothing. This sensitivity side effect seems to affect both sexes, but women have to contend with hot flashes as well. I take off as much clothing as I decently can. And turn on the A/C or fan. And still – yuck.

Nails. My left middle fingernail now has a greenish band halfway down, underneath, which I hope is just a bruise. All my nails are discolored and separating from their beds to some degree, but so far not falling off. I’m keeping them very short to reduce the chance of their catching on something and tearing.

July 19: Turns out it’s not possible to cut a nail so short that it can never catch on anything. I caught that middle nail on the fabric of a car seat, and bent it backward halfway up the nailbed, at the point where the nail affected by taxol is discolored and separated from its bed. That was excruciating; I can well believe that having your fingernails removed is a very effective form of torture. Now the nail is torn halfway across and even more likely to catch and tear again. I’m trying to keep it taped down. but having tape on the middle finger of my dominant hand is several kinds of annoying.

Secondary infection. I’m nearing the end of round 3 (total of 34 days) of Keflex, an antibiotic to treat the staph infection in my sinuses. For me in recent years, the major symptoms of sinus infections have been depression and fatigue. Yay, just what I needed more of right now! If the current round of treatment doesn’t finally clear this up, I will have to have my sinuses flushed. For starters. I just hope I don’t end up needing sinus surgery again.

Tomorrow I start radiation. And, very likely, all-new side effects. When I haven’t even finished with the current ones. Umm… yay?

July 17 – Updating with a few things I forgot to cover:

Digestive system. Constipation is no longer a problem, in fact my bowel at the moment tends to err in the other direction – which might also have to do with the antibiotics – which, sadly, have not cured the sinus infection. No, I can’t take probiotics right now (oncologist’s orders).

Taste buds. Mostly back to normal – yay! As far as I can tell, most foods taste as good (or not) as they ever did. The only taste effect I’m noticing nowadays is that sometimes I have a buttery taste in my mouth after eating some foods. It’s not bad, just weird. For all I know, that could also be a result of the antibiotics.

July 19

Body temperature regulation problems aka acquired thermal discomfort. I was told somewhere along the way that chemo could mess up my body’s ability to regulate temperature. It seems there may be more to this than menopausal hot flashes (which are bad enough!): “Although there seems to be a general tendency by caregivers to lump together symptoms of thermal discomfort into simply being annoying menopause-like side effects of various breast cancer treatments, it is clear that the actual basis of thermal discomfort after breast cancer may be much more complex.” source

What I know: it is now (I hope not forever) very difficult for me to achieve and maintain a comfortable body temperature. I sometimes feel shiveringly chilled (and my feet are almost icy, but that has been true for much of my life). Cold air blowing on me, especially on my uncovered head, can be almost painful. But then I can suddenly experience a wave of heat: my face turns red, I break into a sweat all over, and, if you had a hand on me, you could feel my skin temperature rise.

According to the same study I quoted above, it may be that hot flashes are a good sign: “women who reported hot flashes among those taking tamoxifen were less likely to develop recurrent breast cancer than those who did not report hot flashes.” (I’m not taking tamoxifen yet, but I certainly have the hot flashes.) On the other hand: “menopausal symptoms lead to declines in quality of life among breast cancer patients by interfering with daily activities, sleep patterns, and self esteem.” I don’t think I’m experiencing a decline in self-esteem, as such, but certainly when I’m exhausted and sad I feel generally more emotionally fragile.

Chemo and Menopause

Many kinds of breast cancer are hormone-sensitive, meaning that they grow faster in the presence of estrogen and/or progesterone, which are naturally produced in the female body until menopause. When your cancer falls into this category, part of the aim of chemo (and the Tamoxifen I’ll be taking later) is to stop the body’s production of estrogen and progesterone. This means that you go into menopause, at whatever age you happen to be.

I had been in perimenopause (ie, on the way to menopause) for years. It’s  no fun. Symptoms include migraines, ferocious mood swings, insomnia, and hot flashes. Many women take hormone replacement therapy (HRT), which alleviates these symptoms by partially replacing the hormones that your body is no longer producing. I started HRT about five years ago.

My doctors took me off all hormones as soon as the cancer diagnosis was confirmed in November. Analysis of the biopsy material soon showed this to have been the right decision: my tumor was both estrogen- and progesterone-sensitive. Hormone-sensitivity is good news for treatment: you can slow the growth of the tumor and any other cancer cells in the body, and reduce the likelihood of recurrence, by not having these hormones in you.

But this means that, in addition to the direct side effects of chemo, I am dealing with all the symptoms of menopause. Many of the side effects listed for chemo would occur during a natural menopause anyway, but I guess they are considered side effects of chemo because chemo causes menopause at any age. The completion of menopause also means that a woman can no longer get pregnant; that’s why infertility is often a side effect of chemo (though, in younger women, it’s not always permanent).

Because I now have a history of hormone-sensitive cancer, I will never again have hormonal options to deal with the menopause. I can’t take “natural” alternatives, either – if a substance, regardless of origin, has the same effects as estrogen on my body, it could have the same tumor-stimulating effects on any cancer left in my body as well.

So I’m now dealing with menopause the old-fashioned way: suffering through it. Very frequent hot flashes mean I can’t stay comfortably dressed for more than a few minutes at a time – whatever I’m wearing one moment will be too hot or too cool the next. The human head dissipates heat quickly, so my first reaction to a hot flash is to take off whatever head covering I’m wearing. I am well past being embarrassed over showing my lack of hair.

I’m also having mood swings, though it’s hard to be sure how much of this I’d be having anyway. Cancer and the treatments for cancer, and then living with the possibility of recurrence, are all emotionally very hard: I think I have a right to some moods!

Insomnia… ugh. The only time in my life that I have been a sound sleeper was the third trimester of pregnancy. Both chemo and menopause contribute to insomnia, in my case it’s so bad that, even with ambien, I wake up multiple times a night for one reason or another. On the worst nights, between waking up a lot and turbulent dreams, I get up in the morning feeling that I’ve barely slept.

On the up side: I haven’t had any migraines recently, and I haven’t had a period since I stopped the HRT in November. My gynecologist did a blood test and found that I’m still producing enough hormones that I could possibly still ovulate and be fertile. I suppose the Tamoxifen will put an end to that – that’s what it’s meant to do.

HRT and Breast Cancer Risk

Research on the possible role of HRT as a cause of cancer has gone up, down, and sideways during my lifetime. When I started taking HRT, the current thinking that I was aware of (and was reported by the gynecologist who prescribed it) seemed to be that HRT did not significantly increase the risk of cancer, and that there were possible beneficial effects on brain function later in life for women who took HRT through menopause and beyond. source

I have recently learned that: ”In 2000, the so-called Million Women Study in the United Kingdom identified estrogen and progesterone, prescribed in hormone-replacement therapy to women to ease menopausal symptoms, as major risk factors for the incidence and fatality from estrogen-positive breast cancer.” [Mukherjee, Siddhartha The Emperor of All Maladies: A Biography of Cancer (2010-11-16).  (p. 456). Scribner. Kindle Edition.]

Investigating further, it appears that the form of HRT I was using (estrogen only), is not nearly as risky as the estrogen-progesterone form that I would have been given after I stopped having periods: “Current use of HRT is associated with an increased risk of incident and fatal breast cancer; the effect is substantially greater for oestrogen-progestagen combinations than for other types of HRT.” source

So… I guess I don’t have to feel like I caused my own breast cancer by taking HRT. I did think that for a while. It was not a helpful addition to the emotional load of cancer.

my breast cancer story (thus far)

My History in Customer Service

Note: I had largely forgotten about a review I wrote in 2010 of Tony Hsieh’s book Delivering Happiness: A Path to Profits, Passion, and Purpose. More importantly, I had forgotten that it included a history of my philosophy of customer service, which I think deserves separate billing. So here it is:

I have cared about good customer service, both receiving and giving, for a long time. Starting in 1993, I provided great customer service for Incat and Adaptec by being visible and responsive in early online forums (Usenet, email, discussion lists, newsletter). Eventually I was allowed to scale my efforts by hiring a couple of guys who could answer questions as well as I could. But there were huge obstacles to great customer service, such as the lack of communication and data-sharing between the internal groups at the company who dealt with customers. This siloing within companies seems to happen a lot and be considered normal, so it was difficult to get my colleagues to understand that customers neither know nor care about a company’s internal systems and power struggles. To customers, it’s all one big entity, and they are understandably frustrated when the customer service team doesn’t know what sales or support are doing or, worse, they all contradict each other.

There was a smart VP who immediately understood the problem when I presented a graphic showing all the different information stores at the company and how they did (and didn’t) connect to each other. He wanted to try to fix the situation, but soon we were all sidetracked by the spinoff of Roxio, which required us to build new systems and sites from the ground up. As webmaster, I spent 14 hours a day on that for many months, but (as I dimly recall – it was a crazy time) still tried to keep in sight my long-term goal of creating a great customer experience right across the company.

I was ahead of the curve. Long before “user community” became a fashionable term, I realized that our community of customers could help each other far more effectively than we could ever help them: there were simply far more of them than us, and they were using our products in ways than we couldn’t test in the lab. We just needed to help them to communicate with each other, and put some human intelligence into organizing the information they produced.

The kinds of online forums in widespread use today were not well known in 2000, but I designed some nascent social media features into the new Roxio website, and tried to make it a showcase for our users rather than just brochure-ware for our products. I also worked closely with our new tech support organization, trying to keep us all heading in the same direction.

For personal and professional reasons, I left that job in 2001 and went back to Italy (where my family was), so I never got to see whether my ideals of customer service were realized at Roxio.

A few years later, at TVBLOB, I chose “Director of Customer Experience” as my title because I hoped to instill in this new company, from the beginning, a culture of great customer service. We were trying to introduce an entirely new kind of technology to a mass audience, and I felt we would succeed or fail on how our end-user customers felt about us. This would, in turn, be a function of their entire user experience, from product interfaces to sales calls to technical support; it would be critically important to have all these areas aligned behind the same vision of how things should look to customers. I’m not sure whether this could have been achieved in that particular company, but personal and professional considerations took me out of that job before we even had end users.

In summary: I have long cared a a great deal about treating customers well, but realized that truly great customer service would require a corporate culture and mindset quite different from the ones I found myself immersed in. Though I tried very hard for years, I alone could not effect the changes needed. I was left with a vague hope that, somewhere, someday, some company might get it right, and I might even be part of making it happen.