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breast cancer

Treatment Roundup: July

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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.

Continue reading Treatment Roundup: July →

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One Month Post-Chemo

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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 breastcancer.org 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. Continue reading One Month Post-Chemo →

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Chemo and Menopause

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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.

Continue reading Chemo and Menopause →

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Chemo Roundup: June

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June 1

Another neupogen shot today. Basically all my joints and muscles hurt. Partly probably to do with lack of exercise but I’m too damned tired to move.

June 2

Aching from neupogen shots, and I’m afraid the sinus infection that came roaring back over the weekend may be moving into my throat and lungs. Have had mild sore throat and congestion, bit of a cough, from time to time.

June 3

Had to stop using the “best” vein in my left arm for blood draws a while back, because it has built up scar tissue and now hurts. As of today, the right one is just not giving any blood at all, even though she can get a needle into it without hurting particularly. Is that what it means to have a collapsed vein? white cell counts 31,000 (normal is 10,000), so won’t need neupogen shots this week (yay) Dr L can sign off on leave up to six weeks after chemo ends not sure if that has to be declared while I’m still undergoing chemo

Going on Leave

Hard decision to make, partly because, tired and sick as I am, it’s hard to make any decision, let alone one involving complex parameters, possible risks, and bureaucratic hoops to jump through. I think the American worker is trained not to ever let ourselves be vulnerable – we are a bullying culture, and the pack goes for you when your blood is in the water. And we get far less paid sick leave than other countries. I ended up going on leave effective June 4th.

 

later: Profoundly depressed and anxious. head hurts.

June 4 – 15.1

After infusion, B took me to SF to see Dr Johnson and get a culture.

June 7

Sinus infection as bad as I’ve had in years. Heavy green gunk coming out of my nose, general malaise and exhaustion. Hard to tell at the moment what is chemo and what is infection. My hands and feet are numb and tingly, that’s neuropathy. But the terrible weight in my arms and lower legs – taxol? infection fatigue?

June 8

Hot flashes come at night, which def does not help with sleep.

In the last few days, my arm and leg muscles are extremely weak and sore.

June 9

Muscle and joint pains, and this evening some sharp abdominal spasms. WTF. So tired of all this.

June 10

Mild (so far) diarrhea.

Dr L:

stay off work til July 6th – “You’re beat up at this point”

taste buds and GI tract can take 3-6 months to recover

blood counts ok, no need for shots

have port removed after mammogram, until then get it flushed monthly

June 11 – 16.1, last infusion

There is a nation-wide shortage of zofran, they were going to give me Aloxi instead, but that gives me terrible headaches. We took the risk of doing without, which I may come to regret, but I can always take a pill. Picked up a burger on the way home and devoured it, tasted pretty good. But not settling well. later – ok, no nausea. Just ongoing muscle pain (back, legs) and weakness. Ibuprofen doesn’t seem to do a thing for it

June 12

Decent night’s sleep, woke up once with a sweating hot flash. So far this morning feel pretty good.

(felt pretty good much of the day, then started having mid-back pain in the evening)

June 13

tired, hungry, irritable

June 14

woke up a lot with hot flashes, though not absolutely drenched – that happened once last week, otherwise not in many months noon – feeling strangely cold, with muscle pain – arms, legs, back

June 15 – 16.5

Had plans for today, but just putting laundry in was exhausting. Apparently I need to be less ambitious. mood swings. I guess menopause-related. gut has been sore for over a week, similar to when I was constipated, but I’m not particularly so.

June 16 – 16.6

side effects I still have:

  • running eyes (when outside)
  • running nose
  • mild intestinal cramps/spasms
  • hot flashes
  • waking up a lot
  • dry mouth
  • taste buds not working
  • muscle weakness
  • tingling feet and hands

June 17 – 16.7

Brief walk, came back completely tired. WTF? Hungry but can’t think what to eat. Everything tastes blah and unappealing.

June 18 – 16.8

Slept fairly well last night. This morning felt good for ~2 hours, then tired. Eventually drove to Target and to pick up a framed picture, exhausted after that. Splitting headache at 330 – migraine? trying beer

June 19 – 16.9

Sinus infection flared hard last night, in left sinus as well now, and I just finished the Keflex yesterday. Called my ENT’s assistante this morning, she hopes to hear from Dr J today.

This afternoon, feeling pain in the surgery site and pain in my right arm shot site. WTF?

June 21 – 16.11

Started 2nd course of Keflex Saturday morning. Had a very bad night with hot flashes – didn’t sweat up the sheets, but could not get temp comfortable. Took the plush blanket off the bed, let’s see how it goes with just cotton. Walked with M to the farmer’s market, B picked us up after shopping. So… I exercised. Very tired and depressed and somewhat anxious this afternoon. Right sinus feeling congested, lungs a bit suspect as well tonight.

June 22 – 16.12

Somewhat better night’s sleep. Did 20 mins/2100 steps on the elliptical this morning. Evidently I’m past the period of not having to worry about my weight, and should start thinking more about the calories I take in. Was reading about the side effects of tamoxifen, one common one is weight gain.

June 23 – 16.13

Was tired last night after the exercise (6000 steps, of which 2300 on the elliptical). This morning walked four blocks, completely done in by that. ???

June 25 – 16.15

Yesterday Jonake came to pick me up, we had dosas for lunch which tasted ok to me. Back at her home, I helped with her resumé / LinkedIn, then she dropped me at the Google field to watch Netflix vs Google cricket. Then I joined B and the team for dinner at an Indian restaurant in Mountain View, food tasted mostly good. Long day for me. Muscles even in my arms sore, maybe this is from the Keflex? Keeping left middle fingernail taped down as it’s about half separated from the bed and I don’t want to accidentally tear it off.

Radiation prep visit = all kinds of bad news. Mainly, that there will be skin irritation to the irradiated area (my entire right breast), possibly bad enough to blister, as treatment goes on. And the area most likely to hurt is the underboob. And how the FUCK am I supposed to support that breast to keep it from chafing and hurting and worse? “Wear a soft bra that fastens in front, one size larger than your usual.” THERE IS NO SUCH THING FOR MY BRA SIZE.

June 27 – 16.17

Having intermittent episodes of shortness of breath/mild asthma. Maybe the steroids I was being given with chemo calmed that down, at the time.

June 29 – 16.19

Altogether managed 5000 steps through yesterday. This morning just walking down and up to do the laundry is tiring.

Depression is a real problem right now, ever since the pre-radiation visit last week. I just don’t have the mental stamina to deal with one more thing. Trying to do things to improve my mental health (meditation class in July).

my breast cancer story (thus far)

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Chemo Roundup: May

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May 3

Finding foods that taste ok can be challenging. Everything seems very under-salted (and I usually don’t use a lot of salt). Familiar foods often taste wrong. Had Korean BBQ beef for lunch the other day, which tasted great. Ethiopian last night was pretty good.
Neuropathy is increasing – feeling tingles in my feet a lot of the time, hands sometimes.
Body temp seems out of control, seem to get rolling mini hot flashes.
And just generally tired.
Denise is visiting from Tampa, doing a party for me today – 20+ people invited!

May 4

Side effect I’ve been noticing for some weeks now: my teeth ache. All of them. Around the roots.
Tired today, possibly from doing so much in the last few days.

May 5

Been getting lots of headaches lately, not sure why. Still more or less constipated.
evening: blood pressure high? I can hear blood surging in my ears. Wrist bp monitor says 145/95

May 7 – 11.1

 

May 9 – 11.3

On antibiotics (levoquin) for sinus infection. Neupogen shots again Friday, Monday, and Tuesday. Generally run-down, with some good days. Thursday night after chemo I slept reasonably, with help. Friday I was relatively productive.

May 11 – 11.5

There are so many “small”, mysterious, unpredictable symptoms. Mouth dryness (and its effects on eating) comes and goes. Food can smell great but taste terrible. We ordered in Indian last night. It smelled divine, but all I could taste was capsaicin.
My heart doesn’t feel right, but I can’t pinpoint or explain how – I’ve never had heard symptoms of any kind before. Sometimes I think I can feel the end of the port catheter poking the inside of my vein, but I’m not sure what that feeling is, really.
With so much going on that I’m already talking about, I feel like I’m overreacting, or might overwhelm people if I talk about too many things.
And then there are the big things I can’t talk to them about. Like wondering if I’ll ever be able to not think and worry about recurrence. The idea of death doesn’t scare me, at least not right now while I don’t think I’m actually close to it. But the idea of pain and sickness even worse than I’ve had to date – much, much worse – that terrifies me. I can’t always be upbeat, I can only hide some of the more downbeat thoughts.

 

May 12 – 11.6

ate a big breakfast (steak, egg, toast), immediately sleepy small, stabbing pains in/around my heart 3rd neupogen shot – site hurts (yesterday’s, in the other arm, also hurt). generally stiff and achy, probably also from neupogen

 

 

May 14 – 12.1

Routine infusion. Tired and my back is aching, not sure whether from sitting too much or from neupogen.

 

May 15 – 12.2

Yesterday noticed itchy spots on the backs of my thumbs and index fingers. I may have been scratching them without noticing – some have tiny scabs. For a while now, I have memory lapses. It’s been a lifelong habit to put things in specific places so I know where to find them later, but with chemo I’ve been putting stuff down in random places, then spend time and irritation trying to find them.

May 16 – 12.3

Nail beds hurt. Thought I had bent back the nail on one finger a few days ago, though I didn’t remember doing any such thing (which would have been painful). Now more of my fingers hurt in the same way. Turns out the nails could separate, or even fall off.

 

May 17 – 12.4

Neuropathy definitely setting in. Feet were horribly cold earlier, used the hot pad. Spent the night wrestling with the blankets – hot flashes.

 

May 18 – 12.5

Slept a lot yesterday, at least it felt as if I did, and still tired today. I guess white cell counts are dipping again.
Need to see dr T today for a surgery follow-up, don’t think I can trust myself to drive.
And now apparently my eyes are going to run indoors as well.
Pulse 75 according to fingertip optical pulse thingy. My normal used to be about 65. I guess this is why I can feel my blood flow almost painfully in my ears.

May 19 – 12.6

Last night I think I woke up due to pain through the middle of my body, sternum to spine. Temperature control – I haz it not. I go from cold to sweating within a minute, and back again almost as fast. Developing a cough since yesterday, stuff in the back of my throat. Sinus infection not cleared (finished antibiotics Saturday), maybe it’s sinus gunk. Managed to do 10 mins of yoga (sun salutes). Get an uncomfortable full feeling and heartburn when I eat, but I’m always hungry – obsessed with food, and then disappointed because it doesn’t taste right. Generally cranky and depressed. Pulse pounds in my ears, especially in the evenings.

May 20 – 12.7

Today’s onco visit was depressing. BP was 120/92 – the latter not good.
The neuropathy will continue and probably get worse, but no one can predict how much worse (and it can keep getting worse even after treatment ends), or whether/to what extent it will be permanent (whatever effects you have left 12 months after treatment ends, you are stuck with for life). I could decide to stop at any point, but of course that would lessen the overall effectiveness of the treatment, by some not-very-knowable statistical amount, in a situation when we’re already working from statistical guesses. No matter what I do, I will never know for sure whether I have done the “right” thing. And it will never really be over. The best I can hope for is that, after some span of time, I stop worrying about it. At least not all the time.
It was very tempting to say “Yes, let’s just stop. This is torture.” But… I had an aggressive tumor. If comes back, I assume it would still be aggressive.

May 21 – 13.1

Diana ran the taxol more slowly today, because she noticed I had looked very pale after the last one. Jonake accompanied me, it was a great time to talk and catch up. Right breast was throbbing off and on with pain during chemo, down towards the nipple (not in the surgery site). evening: fingers aching, feet icy night: feet burning, hands aching as if RSI, but hadn’t typed that much

 

May 22 – 13.2

2pm – throbbing pain in right breast again Neupogen shot at 2:15, by 3:45 my right shoulder blade and arm are hurting. ???

 

May 23 – 13.3

Because it’s a holiday weekend (Memorial Day on Monday), I have to get the remaining 2 Neupogen shots at Good Samaritan Hospital. Didn’t realize they would send me up to the cancer ward for that. Ran into Dr Labban. It appeared to be exercise time for the patients – I saw 3 people (one in a hospital gown) slowly circuiting the corridor with IV stands and people walking alongside. They were mostly lively and talking, but walking slowly. It scared me. I don’t want this to be my end game.

May 25 – 13.5

Neupogen shots hurt more and more – pain in my hip joints and thigh bones last night. Used the hot pad, but with hot flashes that quickly becomes too hot. Yet another night of very broken sleep, partly due to temperature control issues Blood pressure both Saturday and Sunday was the lowest I’ve ever seen it – around 115/60 Saturday, 90/62 on Sunday. They keep telling me to stay hydrated, which I was already doing anyway. Heart rate, meanwhile, has been high – into the 80s and 90s even at rest. BP 113/75 from home wrist thingy. 30 mins later: 132/79 “The incidence of de novo or worsening hypertension in association with these drugs varies between 17% and 80%. The mechanism is not well understood and continues to be investigated.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3113122/ So tired. Just so tired.

Finished reading The Emperor of All Maladies: A Biography of Cancer and learned that, according to studies published in 2000, the HRT I took from about 2010 to 2014 could have “caused” my breast cancer. Or been a contributing factor. I immediately felt sad and furious and… guilty. Now it’s my fault I got cancer. I should have known better than to take HRT. I shouldn’t have trusted the gynecologist who prescribed it (who gave me photocopied studies about the lack of risk), or the studies cited by Louann Brizendine about how HRT before menopause helps with cognitive function after menopause. Maybe it does, but… at what cost? This is exactly why I was trying to avoid reading about possible causes. Had I known, I would have done something different. But I didn’t know. Could I have known? Even with all the power of the Internet at my disposal, could I have read the research and understood it well enough to make a different decision? There was a point when it was clear and should have been obvious to all that smoking causes cancer. Anyone who decided to smoke after that point was an idiot (or an addict). But… this? Is this my fault? [Later learned that the specific form of HRT I was taking (estrogen only) is a relatively minor cause of breast cancer.]

May 26 13.6

restless night, woke up sweaty am BP 123/78 Getting harder to eat – everything tastes so far from right. Back, arms, hands aching, probably from neupogen. I get moments of intense depression.

May 27 13.7

Pre-infusion visit:

    • BP was high, 144/92 I think
  • neuropathy can hit anywhere, hence my facial numbness. Anywhere? Please no.
  • possible loss of nails “just cosmetic”. Yeah, except that meanwhile they hurt.
  • Dr L had me close my eyes while he touched my hands and fingers, to see if I could correctly identify which was being touched. Yup.

May 29 – 14.2

 

Beginning to wonder how long I had neuropathy before chemo, and why. Some of what I’m feeling now, in my feet, is familiar – icy cold, sometimes alternated with burning, and tingling. I ordered a plastic dish tub to soak my feet in, turns out that took place in May 2013. I don’t remember using it that often. Neuropathy can be caused by vitamin B deficiency, which may be why it cleared up when I started taking all the Vit B6 and B12, even before starting the taxol. My feet felt normal for the first time in years. Why did I never mention this to a doctor before? I guess I assumed that cold feet was normal for me, and didn’t think too much about why it was getting worse. I assume winter cold (in May?!?).
3 nails on my left hand are yellowish, middle finger looks bruised in the middle of the nail bed. Whatever is going to happen, will happen to that one first. Most nails on both hands at least a bit sore. nearly midnight: I’ve been anxious and depressed all evening, in waves and spurts. Maybe I needed more distraction. I don’t like these moods.

 

May 30 14.3

Slept somewhat better, between about 1am and 930am with various wakeups.

my breast cancer story (thus far)

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