Mar 1 – 3.4
Had to take a nausea pill yesterday morning and this morning. I guess this is going to get worse, as everyone told me.
Mar 2 – 3.5
Feeling anxious and depressed, if kept within manageable limits, seems like a rational response to cancer. Of course I’m anxious – I could, you know, die. And of course I’m depressed: the life I wanted is on hold while horrible things are being done to my body, and this will go on for quite some time. It’s likely to get worse, and I don’t know how much worse. Right now, coping with the physical symptoms, especially with a sinus infection still to be beaten, is about all I can manage – at least while trying to keep my personal and work life more or less intact.
More nausea this morning, and I haven’t taken the damned antibiotic yet. For several days now, my eyes water a lot, especially when I go outside – streaming, as if I was crying. Right at the moment, I feel very cold esp hands and feet.
Mar 3 – 3.6
Eating has been hard today, had just tea and half a smoothie until around 1 or 2. Took a prochlor… before dinner, but still somewhat wishing I hadn’t eaten. At least the course of ceftin is over so I don’t have to try to get food into me to take it with. At least I was more alert today.
Mar 4 – 3.7
Hoping the sinus infection is gone, keeping a close eye on nasal mucus – lots of it, mostly clear.
Gut is sore.
Woke up at 7, energy gone by about 1.
Mar 5 – 3.8
Waiting to see what’s up with sinus, may be clouding up again. Gut is sore and crampy, shitting a lot but no diarrhea.
Lots of fatigue, napped during the day and again in the evening.
Mar 6 – 3.9
Haven’t been able to get my body temperature right for a while – too hot, too cold, hat on, hat off, feet or hands or both icy, then burning. This morning my skin feels like it’s crawling all over. Ate spicy nachos for lunch, then coughed up clear-to-whitish fluid, I hope just irritation from the spice. So tired.
Mar 7 – 3.10
Damn. Pain/pressure in my upper right teeth. [For me, this is a common symptom of a sinus infection.]Damn. Damn. Damn. From what I’m hearing from others, the worst side effect of chemo can be secondary infections. One friend had a bout with e.coli. A Twitter friend was hospitalized twice. In my case, it may be this sinus infection. I’ve had headaches for the last few days, too, not sure what that’s related to. Allergens are high, which no doubt contributes. Dr L did mention that if we have to go to IV antibiotics to treat this, this could be administered by home health care (which he could arrange), via the port. So at least I’d avoid hospitalization.
Mar 8 – 3.11
Maybe my nose is just runny from allergies – all clear, though still mostly coming from my right nostril.
Appetite and ability to eat almost anything is returning.
Mar 9 – 3.12
Energy runs out quickly.
Mar 10 – 3.13
There is one part of my brain chanting “I’m tired, I’m tired, I’m so fucking tired”
I more or less chaired a meeting from 9 to 10:45, then from noon to 1 attended a company webinar on diversity and inclusion – took notes and fired off emails with suggestions as a result of that. I was brain-tired when Jeffrey (whom I hadn’t seen in ages) arrived soon thereafter. He took me to lunch (burger), we walked around a bit, bought a birthday present, and went to Trader Joe’s. I was surprised when one of the cashiers there gave me a huge smile and said “It’s nice to see you again!” I guess the chemo hat makes me more memorable.
Before we even we finished all that, I was dead tired.
Mar 11 – 3.13
White blood cells ok, red a bit low. blood pressure up again, 135/90
Notes from Dr L:
- start taking B6 now, 100 mg per day
- he can give me ambien when I need it [have I mentioned the 1 million ways chemo interferes with sleep?]
- Taxol – fatigue will get worse. he seems doubtful that I’ll be able to keep working
I keep feeling like feeling bad is my fault. “I should just get more exercise” or “I should eat” – then I’ll feel better. But both of those things are hard to do now, and I don’t actually feel better when I do them.
Mar 12 – 4.1
Woke up at 4am with my eyes feeling full of grit. Used drops. As on other nights recently, hands and feet also felt very dry – I put lotion on both. This morning the soles of my feet feel tingly.
I awoke to news of Terry Pratchett’s death:
Infusion
They made me recline before the Adriamycin push, and I went to sleep for a bit afterwards – marginally more comfortable than an airline seat.
Diana said: “Until we started treating the nausea a few years ago, we didn’t realize how big a factor fatigue was – we thought it was caused by the nausea.”
I asked how long after chemo ends I could expect to feel normal again. Mike and Diane were both cagey, but said: “It can take up to a year.”
Diana told me that, in her early days as an oncology nurse, patients would go in for a biopsy, tissue was examined and the decision to operate further was made while they were still under anesthesia. So you could go in with an unidentified lump, and awake to a radical mastectomy. She said she knew when it was a mastectomy because after about 3 hours she’d see the surgeon go across the hall to the waiting room to tell the waiting family. And, in a lot of those cases, it didn’t help (the patient died anyway).
Mar 13 – 4.2
Feet continue to feel weird.
Stomach acid, not sure if I’m hungry.
Mar 15 – 4.4
Both right sinuses feel congested, starting to blow out yellowish stuff, coughed up a big clot of greed/dried crap. Damn.
Mar 16 – 4.5
Not much interested in food, previous standbys like smoothies sound downright disgusting at the moment. Constipation may be contributing to this. Had a bit of warmed-up espresso with milk early, later ate two halves of canned peaches. Can’t think of anything else I want right now, though I’m hungry. (did manage to eat later)
Mar 17 – 4.6
2pm, and all I’ve eaten is espresso and two peach halves. Had to take Zofran. Now that that is hopefully taking effect, about to attempt a cinnamon roll.
Mar 19 – 4.8
Eating continues to be hard, barely eating the equivalent of one full meal a day. I thought maybe I was constipated – intestinal cramps and gas – but there just may not be much in there at all. I managed not to take any anti-nausea meds yesterday, drank a lot of ginger beer instead. But may cave today.
Did cave.
The front of my shoulder around the port/catheter has been bothering me for at least 10 days. Just feels… off.
Mar 20 – 4.9
Woke feeling nearly normal, no nausea until later in the day. Had a smoothie for breakfast, leftover Moroccan chicken and couscous for lunch. Felt more alert, awake and able to concentrate for a while. Not as much physical energy as I had hoped – sweeping the balcony and repotting plants left me leaning on the railing and panting for breath, had to stop and go back to it later. Now, at 5, feeling tired, but not as terrible as on other days. Weird side effect: ear wax is thicker, stickier, and more plentiful than usual.
Mar 21 – 4.10
Still sickish and fatigued. Food still difficult.
Mar 26 – 5.1
Had a few good days – felt alert and able to think and work, at least in the mornings. Running one-hour meetings still draining. Also was able to eat close to normally.
Today had the first Taxol infusion. Felt nauseous by the end of it, took Zofran before I even left the center. Then had a bout of sharp intestinal cramps, which apparently is a Taxol side effect.
Mar 27 – 5.2
Cautiously hopeful that taxol will not be as hard on my system – got in about 4 good hours from waking up to first feeling tired. Haven’t had to take any further nausea meds last night or today. Last antibiotic tonight, finishing that should also reduce nausea.
Mar 28 – 5.3
Muscle spasms in my lower abdomen, enough to wake me up several times last night. Red spots (pre chilblains?) on some of my right toes, tingling in fingers and toes.
Mar 29 – 5.4
Slept ok, not too disturbed with cramps in the night. Felt ok until I ate this morning (a smoothie), even worse after eating egg and toast. Don’t know if it’s food, or some particular food, or nothing in particular that sets off the cramps. Feeling very depressed and just tired of all this.
Mar 30 – 5.5
Trying to find something I can eat without setting off cramps. Smoothie, toast, and now kichdi. Still cramps. Dr L is prescribing an antiacid. Acid is definitely there, but the cramps are all over my abdomen, in brief waves.
Mar 31 – 5.6
This evening, was finally able to eat (pasta with pesto, cheese and crackers, salad). Got pantoprazole from Dr L, took it this evening before bedtime as instructed, we’ll see if it’s needed. Feel ok after dinner, except I’ve been anxious all afternoon/evening.
Dr L says I have a low red cell count (hence the fatigue), told me to take multivitamins. If it gets too bad, I’d have to have a blood transfusion. He believed the stomach cramps after the first round of taxol were due to food poisoning – possible, as we had eaten out the night before.
my breast cancer story (thus far)
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.]
