Stockholm September evening

Treatment Roundup: August & September

Aug 1 – 7 weeks post chemo, Saturday after Rad 15

Maybe the sinus infection is going and that fatigue is ramping down – I was feeling more alert and energetic last night. This morning somewhat more tired – maybe the radiation fatigue is ramping up? Gah. I have work to do!

Aug 3 – 7 weeks post chemo, Rad 16

Monday morning: A few twinges in the surgery site, occasionally feels as if someone is running a hot wire in there.

Post-radiation: Ow, fuck. Throbbing.

Aug 6 – 8 weeks post chemo, Rad 19

Finished the Cipro Monday, right maxillary still feels very wet and congested. Having near-constant headaches.

Aug 8 – 8 weeks post chemo, Rad 20 (yesterday)

Realized last night that, as I suspected, the sinus infection is not gone. Damnit. I had just gotten my radiation schedule worked around so I could attend IDF and a team meeting in SF week after next, in hopes I would actually have the energy to do so. With a still-raging infection, that seems less likely (I did manage OOW with an even worse infection, five years ago, but it wasn’t fun, and at the time I lived close to Moscone Center).
My eyebrows may be coming in thicker than they’ve ever been before, though for the moment still too short to look that way. Lashes rapidly growing long and thick (thanks to Lumigan, I suspect), but blonde on the right side (as before), so my left eye looks darker.

Aug 15 – 9 weeks port chemo, Rad 25 yesterday

Saw Dr L this week for monthly chemo checkup, blood levels normal, all is well. “Can I travel?” I asked. “Yes.” In radiation yesterday, Dr P also agreed that I can travel. My right breast is slowly becoming brown and freckled, as if I’d been tanning. Occasional twinges of pain in the tumor site, but really nothing much. The remaining problem is still the sinuses. Still feel congested, tired, and headachy, and occasionally getting nasty green stuff out of one side or the other. Dr J prescribed a gentomycin rinse (I think we tried that 5 years ago, too). Until that arrives, I’m doing a plain saline rinse twice a day. Not sure if that is helping or just making me feel waterlogged.

Aug 28

Last radiation treatment was yesterday. My right breast is noticeably darker than the left, and the tip of the nipple is darkened and cracked, like dried-out mud. There’s a ring of darkened follicles around the areola, Dr Wong said that was due to edema. But… not much redness, no blisters, and very little pain, just occasional twinges deep in the breast at the tumor site where all the radiation was targeted. (I later learned that I might feel such twinges occasionally for as long as three years!) I am very tired, though not nearly as much as at the end of the chemo. Dr said I will start to feel better in about a week – so should be on the upswing in time for my trip to Stockholm a week from tomorrow.

Aug 31

Still tired. Muscles and joints seem to overreact to any walking or standing I do – end up in terrible pain. Yoga helps, but not always enough. Neuropathy still a factor. Either my feet are freezing, or I have surging, burning, tingling sensations. One or the other.

Sept 3

Thought I was starting to feel less fatigued yesterday, but today I’m flattened. Allergies are bad – eyes burning, nose running, congested. Learned that “post-chemo rheumatism” exists, and might explain the terrible joint and muscle pains I’m getting sometimes, with or without exercise.

Sept 17

Just back from the oncologist to start tamoxifen (as soon as the pharmacy sends it to me). Apparently I can expect a mixed bag with that. I’ve been having migraines lately and lots of hot flashes. He said he’s seen tamoxifen actually help with the migraines (surprising, since in menopause they are caused by tapering estrogen – which the tamoxifen aims to kill off completely). The hot flashes could get worse, but are currently so bad that I may not notice! I’m waking up 3-4 times a night with them, plus getting them throughout the day. Can’t keep my body temperature comfortable for any length of time (which made being at the office even harder – at least at home I can adjust whatever I need to).

My GP suggested I try Effexor, an anti-depressant which is known to reduce hot flashes. Mixed reports on various possible side effects of that. Research seems to be conflicting. In any case, I won’t start that til a month after I start the tamoxifen, and get used to the side effects from that, so I’ll know what new side effects it causes and can then decide whether I want to keep using it or not.

Sept 27

Started tamoxifen a few days ago. I had already been waking up every two hours – in other words, no noticeable change there. Mood is definitely affected: was feeling down last night.
Side effects… there are still so many. Neuropathy has not gotten better, possibly worse: burning, rushing sensations in my feet, especially at night. Sometimes pain in some toes. My feet are icy a lot of the time, when not burning.
Muscle and joint pain continue, not improved by exercise of any kind (though yoga sometimes helps eg with tight hamstrings). My upper arms hurt sometimes for no apparent reason (ie not necessarily on days I do sun salutes).
Still plenty of fatigue, very frustrating as I have so much to do – that I want to do! – at work.
Eyebrows are falling out again. Maybe lashes as well – they don’t look thin yet, but I’ve had a couple of incidents of something getting into my eye and being hard to get out again, which might be lashes.
Trying to figure out the effects on tamoxifen over the day, depending on when I take it. Woke up in a decent mood, took it around 9. By 1 I’m irritable and sad.

Sept 29

Maybe the mood effects will pass quickly – so far today I have been in a decent mood (in spite of waking up at 5:15 am for a meeting – I went back to sleep afterwards until 830).
Saw Dr Patel for a radiation follow-up. He says to moisturize the area daily to avoid “retraction” of the skin, which could cause my boobs to become noticeably uneven.
He also said I should postpone my next mammogram until Nov or Dec because sooner it would be painful and the area that most needs looking at (the tumor site) will still be inflamed. And I should go ahead and get the port removed as I do not need it, and psychologically it signals an end of treatment.
Saw Dr T and have the port removal scheduled for next week.


The skin effects of radiation were not nearly as bad as I’d been led to fear, but fatigue was/is definitely a factor. And there are more ongoing side effects of chemo still in play – my “quality of life is affected,” as they say.

my breast cancer story (thus far)

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)