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)
