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.

openness about cancer

Chemo Roundup: February

Continuing from Chemo, Round 1:

Feb 12 Chemo 2.1

(No, I didn’t.)


Started the day with a blistering headache, took 2 ibuprofen at home. It was finally fading when the chemo started, but now the headache from aloxi has started.

While pushing the adriamycin, the nurse said “Tell me if anything feels painful or burning.” It didn’t, but I could sorta feel (or imagined I did)… something. Like being aware of my blood rushing around my veins and arteries.

8:45pm – not quite nausea, over-full from eating a bacon and avocado sandwich Ross made for dinner. Dizzy, terrible headache.

 

Feb 13 – Chemo 2.2

Slept ok, woke up around 4am, took Zofran, read a while, then slept til 8:45 weight up to 149 from 143 a few days ago, but that may be water retention and/or constipation ate a little yogurt with flax seeds, then boiled potatoes with a few anchovies for lunch mostly just tired/groggy 7pm – stomach acid ramping up again 8pm – constipated. ate dinner, not a bit of intestinal cramps

Feb 14 – Chemo 2.3

Acid stomach, slight (so far) headache, which could be seasonal allergies – lots of pollen around today, and, sadly, cancer doesn’t give me a pass on any of my normal physical ailments.   1:15pm – spine feels bruised, stomach acid and/or nauseous


couldn’t stand my legs anymore, shaved them. carefully [Because chemo knocks down your immune system, you have to be extremely careful of any possible sources of infection, including even minor injuries, like shaving cuts.]

Feb 15 2.4

Woke up this morning from a dream that I was crying for my hair, and crying for Jon Stewart. Smells can be overwhelming, and some that were previously pleasant now are not. Whole Foods was a weird sensory experience. Then rice cooking in the cooker brought me close to vomiting (took a pill, in fear that real nausea would set in). After I spent all day being annoyed by long strands of hair going everywhere, Brendan used the clippers (#7, then #3 for cleanup) to buzz my hair off very short. I’ve had hairstyles almost this short in the past, so it’s not so much of a shock at the moment, but visibly thinning – scalp is very visible when it’s wet. And my head gets cold. Leg hair is growing back much more slowly than usual.

Feb 16 2.5

am Feeling sickish and a bit dazed. eating was somewhat difficult today 11pm – feeling slightly nauseous – that got worse before I finally went to sleep, ended up taking a pill

Feb 17 2.6

could not eat or even have tea or coffee til late in the morning, eventually had a bit of yogurt, then lunch (chicken), a couple more light meals during the day. This evening it was hard to figure out what I could cook and eat that didn’t make me queasy even to think about

Feb 18 2.7

Woke up at 6:30, feeling almost normal. Fingers crossed.
By 11, have had only a cup of coffee with milk and a bit of vanilla yogurt. Stomach very acid. Trying to find something more substantial I can face eating. Biscuits?

Swallowing is a bit hard. Have to hold things in my mouth and think about it. Going to SF to see Dr J today, to get a sample of the gunk in my sinuses since the infection certainly is not going away. pm – That was exhausting.

Feb 19 2.8

Once again at the stage of probably would feel pretty normal, except for this damned sinus infection. Awaiting culture results. Thankful for Dr J.

Feb 20 2.9

Dr J’s assistant called with the news that there’s staph in my sinus. Waiting for the next round of antibiotics to be ready at Walgreens.

Feb 23 2.12

 


Started cefuroximine Saturday. Immediately realized that taking it with a small food or even large smoothie is not sufficient to stave off the nausea that it induces – has to be a full meal. Which will be tricky after this week’s chemo, though I guess I can keep using the anti-nausea drugs.

Have lots of work to do, deadlines that must get done. This will be hard this particular week.

Feb 24 2.13

Annoying difficulties in regulating body temperature. Don’t know if that’s chemo or near-baldness.

Feb 25 2.14

 


Drove myself to Dr L for my pre-infusion blood test and consult. On we go.

Appetite has been good the last few days, so my weight there (fully clothed) is 148.

Asked about a few things:

  • Yes, bruising and wounds on my forearms are again due to steroids. He will halve the dose next time since I seem to be doing fine controlling the nausea, may not need as much.
  • Taxol infusions will each take longer than AC, he says. And will be weekly. On the upside, I won’t have to return for Neulasta shots.
  • Common side effect of Taxol is itching and hives. Thrilling. [Never got this, except a rash around my forefingers and thumbs for a week or so – seemed more like a contact dermatitis, but I couldn’t think of anything I had gripped in both hands that way.]

Feb 26 – Chemo 3.1

Aloxi and 2 steroids in, feeling a bit dizzy and sick.


9pm – still have the aloxi headache

Feb 26 – Chemo 3.2


my breast cancer story (thus far)

Radiation Prep: More to Look Forward To

Yesterday I went to the radiation oncology clinic to prepare for radiation therapy for breast cancer.

To set the scene: I had my last chemo infusion two weeks before, and am still having side effects from that, as well as symptoms from a sinus infection and side effects from the antibiotic I’ve been taking for over 15 days. The intervening two weeks were a welcome respite from seeing any medical personnel whatsoever, but, as I drove to the clinic, I found that it wasn’t enough: the mere thought of having to resume treatment, of any kind, made me sad and tired.

I didn’t know much about what to expect from radiation, except that it should be not nearly as bad as chemo, except maybe for the fatigue. “…radiation therapy is relatively easy to tolerate and its side effects are limited to the treated area.”

I soon learned that “not as bad as chemo” could be a very relative thing. The radiation nurse explained what I have to look forward to: something like a bad sunburn (on the right breast, the one being treated), increasing in severity over the course of the treatment and continuing for some weeks afterwards. “Bad” as in: possibly even blistering. It’s true that some women don’t react that badly to radiation, but I’m likely to be on the unhappy end of the spectrum because (from breastcancer.org):

“your skin might have a more dramatic reaction to radiation, covering more of the breast area. This is more likely to occur if:

  • Your complexion is fair and you’re susceptible to sunburn.
  • You have large breasts.
  • You are receiving radiation after mastectomy, and the treatment is designed to give a high dose to the skin.
  • You’ve had recent chemotherapy.”

Three out of four… I’m screwed.

And, for my large breasts in particular, it gets worse.

I wrote a long time ago about the difficulties of fitting bras. For me, this became both easier and harder when I moved back to the US. Harder because I gained and then lost a lot of weight, then, with the onset of menopause, began gaining breast size for no reason I could ever figure out. I now wear a size 34G bra.

For those don’t know much about bra sizing, this means that my ribcage right beneath my breasts is 34” around (this is the band size), while the breasts themselves are 5-6” larger – this means a cup size of G (or could be DDD, DDDD, E, F, or H, depending on the manufacturer).

Most women who have this much breast tissue are also larger around the ribcage; it’s not hard to find a 40G bra, for example. But 34G is very hard indeed – there are few styles available, and they are hard to find (I go to Nordstrom’s, which also has staff who are very good at fitting bras – that’s the easier part).

Most of the bras made for large breasts have underwires: U-shaped pieces of metal that run under and up the sides of each breast. (Yes, actual metal – they set off the metal detectors in airports.) The ones that don’t have wires have broad, tight bands of elastic. Sports bras are more likely to be soft, but also plaster the breasts down to keep them from bouncing during exercise. Neither of these is a good option:

  • A large breast has a deep fold under it, which of course gets sweaty no matter what I wear or don’t.
  • Now imagine severe sunburn in that area, which usually never sees sun.
  • Now imagine that skin becoming possibly blistered, with extra irritation from sweat, chafing, and heat. (I’m having hot flashes, too, which mean I get sweaty more often!)
  • Now imagine wearing a piece of metal tight or elastic against that for hours (yes, there’s cloth over it, but…).

The nurse told me not to wear underwires throughout treatment, until the skin has recovered afterwards. I could have worked that out for myself. But what the hell is my alternative?

The standard advice on the cancer forums is to wear a 100% cotton bra, with a front closure, a size larger than you normally wear. Guess what? THERE IS NO SUCH THING IN MY SIZE. Those kinds of bras come in what I call “fucking stupid sizing” – S, M, L, XL, 2XL, where large cup size assumes also large band size. If I get a band that fits my ribcage, my cups will overflow severely. If I get a cup size large enough, the band will be so loose that my boobs will fall out the bottom. I have some like this that I wear for minimal support and comfort at home, but I would not be comfortable wearing them (physically or psychologically) in public.

Going braless is not an option. Large breasts are heavy, especially mine (dense breast tissue, remember?). They need support, and hurt without it.

Most of this flashed through my mind as the nurse was explaining other radiation side effects, like fatigue (yeah, that happens, too – no one knows exactly why).

Then she gave me a form to fill out, a new requirement for hospitals to measure improvement of patient “distress,” instead of their previous measurements of sheer physical pain. I think I scared her: I was pretty damned distressed by the time I filled out the form. She recommended a local cancer support center, and the clinic’s social worker (this was part of the standard info packet anyway).

Other fun things about radiation include that I shouldn’t swim or sunbathe throughout. Fortunately, I’m not much of a swimmer anymore, and mostly actively avoid sun; I had enough of bad sunburns in childhood.

Then I went on to the actual prep part of the visit. This meant stripping to the waist and putting on a hospital gown, then waiting in a waiting room as I will for actual visits. The worst part of that was the TV. Ten minutes’ exposure to the tripe that is daytime television is ten minutes too much.

The technician came and escorted me back to the radiation area. The preparation was to figure out how to aim the linear accelerator they’ll be pointing at my breast. I had to lie on a table with a CT scanner, my right arm over my head, supported/held in padded open cuffs at the upper arm and wrist. As I soon discovered, these were not comfortable: the one at the upper arm was pinching a nerve such that my hand started going numb.

I lay there for 25-30 minutes while the technician aligned me on the table, put stickers on me to mark the surgery scar, my nipple, and other spots whose logic I did not understand, then ran me through the scanner, and had the oncologist come and check her work. Then, after a brief break for me to move my arm, she put me back in position, and tattooed five dots on and around my breast (one is centered on my sternum). I now know that it is extremely unlikely I will ever willingly get a tattoo; even that small experience of it was unpleasant, and I will not welcome any more needles into my life than I already have to.

Now I have another two weeks or so “off” while a form is made, I’m not sure whether that is to support the breast in a specific position, or to mask other parts of me that they don’t want to hit with radiation. Frankly, after all that, I wasn’t in a mood to ask any more questions.

After the form is ready, I’ll go back for a simulation: a dress rehearsal of radiation treatment, without the actual radiation. In the meantime, the radiation oncologist will be preparing a treatment plan with specific dates and doses to be administered. As with chemo, I will see him once a week during treatment to monitor and try to manage side effects. At least this presumably will not involve needles for blood tests (though I’ll also be having a follow-up visit with the oncologist during this time to check cell counts etc., and I’ll have to have the port flushed with heparin once a month so I don’t get blood clots in it).

I spent a lot of the rest of the day crying. I’m so tired of being a cancer patient, tired in general, and utterly distraught at the idea of having any more pain and problems with my breasts. It’s hard enough to deal with them under normal circumstances. There would have been a certain relief in getting a double mastectomy and just having done with them.


my breast cancer story (thus far)