Chemo Roundup: May

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.

with Tony Boccaccio

Chemo Roundup: April

April 5 – 6.3

Felt great on Friday, worked, cleaned house, went grocery shopping, and only got a little tired in the afternoon (but did not nap). Have been eating well, lots of red meat (stew, pork carnitas, making lamb tagine today). But… had muscle spasms in my abdominal muscles again last night, and have intestinal cramps again today, and a few spasms in my left thigh. Food poisoning not likely this time. Took ibuprofen, we’ll see if that works. I’ve had very broken sleep the last few nights, waking up a lot.

April 6 – 6.4

Slept better last night. Neck and shoulder have been stiff and sore the last few days, going back to my molded memory foam pillow to see if that helps.

2 cups of tea today, not sure that’s a good idea.

Just feel kind of… burnt.

April 7 – 6.6

One of the more annoying side effects is that, whenever I go outside, my eyes start streaming, to the point that my vision is blurry and my face gets irritated from tears. Very tired today, though so far I have not really succeeded in napping.

April 8 – 6.7

Devastatingly tired. Dr L said red cell counts were very low, so I have to have neupogen shots Friday, Monday and Tuesday. In the evening, felt depressed and anxious.

April 9 – 7.1

In the chair again, this time taxol is going ok, though I dislike the high from the pre-meds (antinausea and benadry). Got it all done in about 3.5 hours, was quite productive this afternoon, thanks to the benadryl buzz. Towards evening, some rippling spasms in my colon. Now a bit tired.


Evening: wasn’t hungry much, but ate at 10pm. Now cramps. Mild so far.

April 10 – 7.2

Poor sleep – awake from 4 to 530 I think, dead asleep (also thanks to ambien) when my alarm went off at 8. Went to dermatologist, had two moles frozen (ouch!), then got neupogen shot. Now tired, could be lack of sleep.

Apr 11 – 7.3

Took M to the park, then we parked and walked to eat an unexciting burger. Came home and have been in bed ever since. I don’t quite feel like I really slept, but time is moving faster than I would expect if I had been awake. Sometimes this is very like jet lag.

While we were out and about, I could feel a rushing sensation in my left upper chest (near the port) and upper arm, as if I could feel the blood moving through a vein there.

Apr 12 – 7.4

Slept somewhat better. Temp regulation at night a problem.

Apr 13 – 7.5

Had the 2nd neupogen shot (Brendan drove), this one in my left arm. But I have pain in the right arm, at the site of Friday’s injection. ??? Pretty bad day with fatigue and depression. Actually low enough to watch TV. Once in the evening, stood up and felt dizzy, could hear the blood rushing in my head.

Apr 14 – 7.6

Got a decent night’s sleep and felt a bit better this morning (neupogen increasing white cell counts, perhaps). Managed to drive myself to today’s shot and then grocery shopping. Unpacked groceries, cleaned old stuff out of the fridge, have done a bit of work but, as usual, dead tired after eating.

I get twinges in my chest, maybe around where the end of the catheter sits in the vein.

Apr 16 – 8.1

I was having neuropathy – numbess, tingling, and hot/cold, especially in my feet, before the taxol started. Dr L advised Vits B6 and B12, and they seem to be working! Have had a few occasional tingles since starting taxol, but not bad at all. Infusion went smoothly, started at 1030 ended around 1. Then B drove me over to the hospital to pick up contrast drinks for Monday’s CT scan. Having that because I’m still getting abdominal pain/cramps, occasionally enough to wake me up at night. Dr L says maybe I got something at that Burmese restaurant the night before Taxol started, and because my immune system has been down, it’s lingering on. But… we scan. I felt both stoned/sleepy and wired after infusion, then slept badly – woke up a lot and had trouble sleeping again, in spite of ambien.

Apr 18 – 8.3

I kept waking up due to dry mouth or whatever. This morning I felt good, got some writing done, then Pamela visited, and Meena briefly.


Went out briefly, shopping, and after that I was done in.

My appetite and specific tastes keep changing. I have wasted a lot of food during these months because I’m bad at predicting what I will like and keep on liking (or even be able to stand the smell/taste/thought of). The unpredictability of everything about chemo makes it that much harder.

Just now · Like

Apr 20 – 8.5

 

CT scan this morning to try to determine why I’m getting abdominal spasms/cramps (which were stronger last night than they had been in a while, reason unclear). This meant waking up at 4:30am to drink a contrast solution, and drinking another at 7:30 just before leaving for the hospital. Then had to also have I/V contrast into my arm. The whole thing was over quickly, Dr L should have results by the time we meet Wednesday. Turns out the contrast drink is a laxative – I have shit more today than at any time since chemo began. Which is tiring and painful, but… at least I’ll be well purged, and constipation should not be a problem for a bit. Cramps continued fairly nasty into the night. Correlated with something I ate? Broccolini twice the day before?

Apr 21 – 8.6

Felt fine this morning until coffee/smoothie. Maybe eliminate caffeine. 10am – Ate a souffle and half a pastry from Panera. Cramps. Tired. slept ~1130-1230


Ate an early dinner (630) and a late one (10), pork tenderloin with apples and onions, mashed potatoes salad. Cramps after, but gone by the time I went to sleep.

Apr 22 – 8.7

This morning had a small espresso around 645, then smoothie (fruit and yogurt) at 945. Felt fine til after smoothie, now tired, burny feeling in stomach/intestine.


1130 – ate toast, egg, ham.

later – CT scan result: severe constipation. Prescription: prunes.

White cells low, will be doing neupogen again next Mon-Weds. Red cells better.

Apr 23 – 9.1

Feeling surprisingly good today.

That lasted most of the day. Dinner was tricky – at first all I could think of that sounded appealing was a smoothie, but I was still hungry. Tried making open-faced goat cheese and chutney sandwiches, but the texture and flavor both turned out unappealing. Then brushed my teeth and my mouth may have bled – seem to have sores developing on the inside of both cheeks. Damn.

Feet and hands a bit burny.

Body temp all over the place, hot and cold flashes.

Apr 24 – 9.2

Restless sleep, probably due to chemo pre-meds (although steroid dose was only 5mg – by my request, half the previous week’s dose). Still a bit wired but also very tired today. Bought some fiber stuff, will try taking it every day, since prunes are not enough for my constipation.

Apr 28

Constipation almost solved, with fiber and prunes. Eating somewhat more, though a lot of it doesn’t taste right. Fatigue getting worse. Before, I could cook. Now I don’t have the energy. Weird chemo side effects (maybe): completely misremembering numbers, and getting songs stuck in my head even more than I used to. Also, blood pounding in my ears sometimes when I stand up.

Apr 29

Dr L says white cell counts high enough that he called off the third Neupogen shot I was to have had today, says this will probably hold me through the next cycle. I complained about problems sleeping the night of chemo, but the steroid dose is already as low as it can go. later: The blood rushing in my ears/neck is sometimes very annoying. Right now my ears are ringing and I have a headache.

Apr 30 – 10.1

 


my breast cancer story (thus far)

sparse hair

Chemo Roundup: March

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)