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.
I need to not be so tired right now.
— Deirdré Straughan (@DeirdreS) August 3, 2015
Post-radiation: Ow, fuck. Throbbing.
Radiation side effects not bad so far, but every now and then the target tissue in my breast gives a twinge: “WTF are you doing to me?!?” — Deirdré Straughan (@DeirdreS) August 3, 2015
I was told to expect something like a v bad sunburn (may yet get that). Was not expecting deep, throbbing pain. Ow, boob.
— Deirdré Straughan (@DeirdreS) August 4, 2015
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)
Damn. Sinus infection is still with me, and I don’t even know what comes next to treat it. We’ve thrown all the drugs at it already. Damn. — Deirdré Straughan (@DeirdreS) August 8, 2015
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.
Got out to see a movie for the first time since November – “Mr Holmes” was well worth it.
— Deirdré Straughan (@DeirdreS) August 10, 2015
Actually seeing people in person for work will also mean dressing in business clothing. An eternal problem for me – and most other women. — Deirdré Straughan (@DeirdreS) August 10, 2015
Oh, hmm. In the “be careful what you wish for” category, I suddenly need to plan a trip to Sweden. — Deirdré Straughan (@DeirdreS) August 13, 2015
So here’s what I look like lately. Cannot figure out what my hair color is doing. But – hey! Eyelashes and eyebrows! pic.twitter.com/FsJSo6pgAc — Deirdré Straughan (@DeirdreS) August 14, 2015
The prospect of an international trip makes me feel like I’m coming back to real life. Which tells you a lot about me. <wry smile>
— Deirdré Straughan (@DeirdreS) August 14, 2015
After all, “global traveler” is a much more fun identity than “cancer patient”. — Deirdré Straughan (@DeirdreS) August 14, 2015
So who’s at IDF next week? I will be, re-emerging into tech society. Looking forward to seeing colleagues and friends from all over. — Deirdré Straughan (@DeirdreS) August 15, 2015
Huge thanks to @ericsson (co. & colleagues), for being enormously supportive – materially & emotionally – throughout my cancer treatment… — Deirdré Straughan (@DeirdreS) August 15, 2015
…it’s a great company with great people, and that’s why I’m happy to be fully back at work and contributing. — Deirdré Straughan (@DeirdreS) August 15, 2015
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.
Bone density scan tomorrow. Robocall instruction: “Wear clothing with no metal.” Uhhh…. — Deirdré Straughan (@DeirdreS) August 17, 2015
First conference in a while. My feet hurt. A lot. — Deirdré Straughan (@DeirdreS) August 19, 2015
Oh, right, now I remember what my real life is like: busy! — Deirdré Straughan (@DeirdreS) August 19, 2015
Deeply happy to be back in the saddle, helping a great bunch of people do great things @ericsson — Deirdré Straughan (@DeirdreS) August 19, 2015
Down to my last 4 radiation treatments. After this it’s 10 years of pills (Tamoxifen), mammograms, and wondering if the other shoe will drop — Deirdré Straughan (@DeirdreS) August 20, 2015
That thing where I’m starving, but I’m too tired to do anything about it. — Deirdré Straughan (@DeirdreS) August 22, 2015
That was the most active week I’ve had since January. Very, very tired – but happy. — Deirdré Straughan (@DeirdreS) August 22, 2015
Walked to the farmers’ market and back. The road back to any kind of physical fitness after all this treatment is long and daunting. Tired. — Deirdré Straughan (@DeirdreS) August 23, 2015
Hoping to make night hot flashes less disruptive and miserable, bought expensive 100% cotton sheets and a light cotton blanket. We’ll see… — Deirdré Straughan (@DeirdreS) August 25, 2015
A year ago, after 2 years of weekly or more yoga, I was in pretty decent shape. Maddening to be starting over from near-zero. — Deirdré Straughan (@DeirdreS) August 25, 2015
Still frustratingly tired – could be a result of almost-done radiation, for weeks yet. Or could be the neverending sinus infection. Or both. — Deirdré Straughan (@DeirdreS) August 26, 2015
Radiation effect: a noticeable and very precise tan, only on my right breast, with new freckles that look like a weirdly intentional design. — Deirdré Straughan (@DeirdreS) August 26, 2015
1 more radiation treatment to go. (I’ll still be tired for a few weeks to come, probably.) — Deirdré Straughan (@DeirdreS) August 26, 2015
Apparently I have to deal with one more round of crushing fatigue before I get to feel normal again, I hope soon. So tired of being tired. — Deirdré Straughan (@DeirdreS) August 27, 2015
Radiation doc says I can expect to start returning to non-fatigue in about a week. Just in time to get on a plane and have jet lag! — Deirdré Straughan (@DeirdreS) August 27, 2015
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.
After nearly 7 weeks, it’s going to take a while to get used to the idea that I don’t have to go to radiation every weekday afternoon. — Deirdré Straughan (@DeirdreS) August 28, 2015
Must be feeling more energetic – just spent an hour moving shelves and kitchen stuff to try to locate the source of an ant invasion. — Deirdré Straughan (@DeirdreS) August 29, 2015
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.
Grateful to past me who froze food that didn’t taste good during chemo, but tastes pretty good now when I’m too tired/busy to cook. — Deirdré Straughan (@DeirdreS) August 31, 2015
Could I have NO physical misery, just for a day or two? That would be nice. (Sadly, recovery from cancer treatment likely to take a while.) — Deirdré Straughan (@DeirdreS) September 1, 2015
@sigje Thanks. I hope you never have to know! I wish no one ever had to know. Even when it goes “well”, cancer sucks. — Deirdré Straughan (@DeirdreS) September 1, 2015
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.
Just had a general checkup. Ironically, if it wasn’t for cancer (treatment), I’d be extremely healthy! Well, that and sinuses. — Deirdré Straughan (@DeirdreS) September 3, 2015
TIL about “post-chemo rheumatism”, which would explain the mysterious leg pain. One more thing to wait til it goes away. Sigh. — Deirdré Straughan (@DeirdreS) September 3, 2015
Yay! I get to travel again! Agh! I have to get on a plane tomorrow! — Deirdré Straughan (@DeirdreS) September 4, 2015
Welcome back to flying. Now we’ll hassle you about the size of the carryon bag which we have just said we cannot check thru for you. — Deirdré Straughan (@DeirdreS) September 5, 2015
Managed to get my bag into the bin myself – must be in better shape than I’d feared. …and the already-upset baby is very close by. Sigh. — Deirdré Straughan (@DeirdreS) September 6, 2015
Another gorgeous day in Stockholm, getting a lot of great stuff done on the work front, my feet hurt like hell. On balance: life is good. — Deirdré Straughan (@DeirdreS) September 9, 2015
“Peripheral neuropathy symptoms are challenging to deal with.” Indeed. — Deirdré Straughan (@DeirdreS) September 10, 2015
It would be nice NOT to be starting this week with a migraine. — Deirdré Straughan (@DeirdreS) September 14, 2015
First almost-full day back in the office. I’m not quite up to full fighting strength yet, but managed to be more or less productive. — Deirdré Straughan (@DeirdreS) September 16, 2015
Clothing that feels comfortable with my now messed up body temps: Ugg boots and a bikini. Makes dressing for corporate success tricky. — Deirdré Straughan (@DeirdreS) September 16, 2015
Neuropathy = icy feet, “acquired thermal discomfort” thanks to chemo = whole body subject to wild temp fluctuations which feel intolerable. — Deirdré Straughan (@DeirdreS) September 16, 2015
Donated the wig I ended up never wearing to local cancer center, so someone who cares more about hair can benefit. I’m ok with my butch look — Deirdré Straughan (@DeirdreS) September 16, 2015
@Sharat_Chander Thanks. Definitely not fearless, but… I guess my choice is to live before I die! — Deirdré Straughan (@DeirdreS) September 17, 2015
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).
Migraines can be triggered by alcohol, caffeine, jet lag, sex; hot flashes by some of same, plus hot food/weather. What’s left to live for? — Deirdré Straughan (@DeirdreS) September 18, 2015
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.
“Exercise! You’ll be stronger, more relaxed, and sleep better.” “But everything hurts.” “Well, don’t overdo it – you’re still recovering.” — Deirdré Straughan (@DeirdreS) September 19, 2015
I would just like to go a whole day without feeling any kind of pain or discomfort or fatigue. I can’t remember what that feels like. — Deirdré Straughan (@DeirdreS) September 19, 2015
@bmichelson I look forward to that. Right now it’s more “Was distracted by better things, didn’t think about it for a while.” — Deirdré Straughan (@DeirdreS) September 19, 2015
I feel that I should be doing things. But I don’t actually feel like doing anything. — Deirdré Straughan (@DeirdreS) September 19, 2015
Reason # 50 or thereabouts why sleep is hard: neuropathy is worse at night. I begin to wonder if treating cancer was worth all this. — Deirdré Straughan (@DeirdreS) September 23, 2015
Tonight I start taking Tamoxifen. My menopause symptoms couldn’t possibly get any worse, right? (Yes, they can, and likely will.) — Deirdré Straughan (@DeirdreS) September 25, 2015
Losing my eyebrows again. Losing brows and lashes repeatedly post-chemo is not unusual but… I was liking starting to look normal again! — Deirdré Straughan (@DeirdreS) September 26, 2015
treatment with tamoxifen, taxane… is predictive of joint pain, may have an impact on women’s lives for some years http://t.co/gxb0hDDMTv — Deirdré Straughan (@DeirdreS) September 26, 2015
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.
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)