Treatment Roundup: July

July 1 – Chemo 16.21

We went to Monterey for two nights to give me a change of scene before radiation starts. Did a lot of walking yesterday (over 10k steps), which left me tired and sore.

Of course my phone, which rarely rings, decided to ring a lot while we were there. Call from Prudential at 7:40am to find out whether I intend to start work again next week. Then other calls and emails about that, turns out I need a release note that I’m ok to work, even though that was the date we’d all agreed on. If someone had told me this earlier…

Dr L wanted to see me before he would sign a note, did that this afternoon. Red cell counts back to normal, not sure what he said about white cells. BP 135/93 – high, for me. Neuropathy seems stable, possibly even improved, so Dr L said he doesn’t think it will get any worse from here.

Dr L was surprised I wanted to go back to work so soon, said the earliest he’s ever seen is 6 weeks post-chemo, most people take 3 months. “Your employer must love you!” As I told him, depression is increasingly a problem, and I think it will be better for me mentally to have something besides cancer to think about. It’s likely that I’ll keep feeling better (slowly) until whatever side effects from radiation hit. But it’s probably going to be another two weeks before I even start radiation, and then I should have at least 2-3 weeks of manageable side effects.

Jul 6 – 16.25

Started work again today, was fairly productive for maybe half a day, then got very tired. Slept badly last night, which isn’t helping. Feet tingling a lot, sometimes have jabbing pains eg in sole of foot. Twice have had pain in my right 3rd and 4th toes. Is this neuropathy healing?

July 7 – 16.27

Slept better last night – ambien at night, only one cup of espresso during the day, and no alcohol. Still had hot flashes, but…

July 8 – 16.28

Went to a meditation class today, think it will be useful.

But tonight I’m so tired and so sad. Seems to me I have reason to be. We’re killing the planet. So many beautiful things will be gone. I’d be ok with the human race being done, but everything else doesn’t deserve to die.

July 10 – 16.30

Radiation dress rehearsal today – also tiring. Another 40 mins or so of having my body position adjusted with my arm in the cuffs (that hold it in position over my head, to keep it out of the way of the beam to my breast).

July 11 – 16.31 / One Month Post-Chemo

Effects I’m still having.

July 13 – 16.33, Rad 1

Leaving home to home again took just about exactly one hour, and today’s radiation probably took a little longer because they also did x-rays. Now I can feel the surgery site inside my breast, the same vague pain I’ve had off and on for months. Especially if I go braless. No idea whether that is related to the radiation. And I feel tired and depressed.

July 14 – 16.34, Rad 2

The Keflex (antibiotic) is finally getting to my stomach, and I get tired very easily. Also not sure it’s working – there’s still yellow stuff in my sinus, more on the left. Still feel uncomfortable in my skin – greasy and sweaty even when I’m not. And I do get hot and sweaty easily.

July 17 – 16.37, Rad 5

Uh… not sure I should be watching this Tig Notaro doc. “If it comes back outside the breast, it’s considered not curable.” Yeah. That.

Jul 18 – 16.38 – Saturday

Can definitely feel that something has been done to my breast. Not painful yet, but… making itself felt.

Jul 19 – 16.39 – Sunday

Some pain deep in my right breast, but a similar pain in the left. Maybe this is what hormonal tenderness feels like now?

July 22 – 16.42, Rad 8

Radiation is not noticeably affecting me much as yet, aside from an occasional twinge at the wound site. Dr Patel told me there’s inflammation happening in there.

Fatigue is bad, partly because of the ongoing sinus infection. Stayed in SF Monday night, slept at Jeffrey’s so that I could see Dr J Tuesday morning. He flushed both sinuses, is culturing the two sides separately, because I had observed in the last 2 or 3 rounds of antibiotics that the two maxillary sinuses were responding differently. Should have results tomorrow or the next day. Intravenous antibiotics are a possibility we never considered before, because that would have required a hospital stay, but now they could be injected via the port. Dr J may opt for that depending what’s in there. I’d just like to avoid surgery.

I’m also tired because I’m not sleeping well, due to my body temperature being all over the place – not just hot flashes, but also (alternately, or even at the same time) chills.

July 23 – 6 weeks post chemo, Rad 9

Tonight my boob feels swollen on the inside.

July 25 – 6 weeks post chemo, Rad 10 Saturday

Reading up on the forums, it appears that eyebrows and lashes can keep coming and going on 3-month cycles for a while – chemo resets them all to the same stage so they all fall out at once. Great. On the plus side, Lumigan is probably helping my lashes grow in faster and thicker, and Tamoxifen causes some women to grow thick brows. So far my pubic hair is still mostly light and sparse, though the hairs are more firmly rooted than during chemo. Leg hair is beginning to feel more like sharp stubble, may need to start shaving again.

Pseudomonas is an anaerobic bacterium that only responds to one family of antibiotics (ciprofloxacin and levoquin), which I know from experience to be very hard on me. And not always effective. In 2010, after many rounds of cipro, I ended up having sinus surgery. Having pseudomonas again is very bad news.

July 29 – 6 weeks post chemo, Rad 13

As of today, lots of broken capillaries visible in my right breast, and a general pinkness. A bit of burning pain deep at the surgery site. Dr P said I could use ice packs on it.

July 30 – 7 weeks post chemo, Rad 14

I’ve been on cipro since Monday – pseudomonas, two strains in each sinus! Can’t tell whether it’s the radiation, the infection, the drug, or all three that is making me tired. But I am definitely tired. Ability to actually sleep comes and goes.

Feeling sick with the cipro – cramps, nausea, dizziness. Better not drive tomorrow.

my breast cancer story (thus far)

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.

my breast cancer story (thus far)