Category Archives: breast cancer

breast cancer

Chemo Roundup: February

Leave a comment

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)

You might also like:

Treatment Roundup: August & September Default ThumbnailOne Month Post-Chemo Default ThumbnailTwenty Years of Being a Woman at Tech Events Default ThumbnailHow Does It Feel to Have Cancer?
breast cancer

Radiation Prep: More to Look Forward To

5 Comments

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)

You might also like:

Treatment Roundup: August & September Default ThumbnailChemo and Menopause Default ThumbnailAfter Surgery Default ThumbnailThe American Caste System
breast cancer

Chemo Done!

10 Comments

…but the effects will be with me for quite a while.

My first chemo infusion took place on January 29th, 2015. The regimen I was on was AC+T. Altogether, I had:

  • four rounds of adriamycin (doxorubicin) and cytoxan, every two weeks
  • twelve rounds of taxol, every week (low dose)

Each infusion was preceded by lab work (to check white and red blood cell levels) and a visit with the oncologist.  Many of the infusions were followed by one or three days of injections, Neulasta or Neupogen. These are granulocyte colony stimulating factors – they “help the body make more neutrophils, a type of white blood cell.” I got those shots when the lab work showed that my white cell counts were low – a possible-to-likely side effect with any and all of the chemo drugs I was getting. Not much I could do for the red cell counts except take multivitamins and eat red meat. Some people are given transfusions, but that was not a great option for me.

I had plenty of other side effects, including fatigue, neuropathy, hot flashes, muscle pain, losing eyebrows and lashes and possibly fingernails, etc. – I moaned about some of them in my tweets. The Neulasta and Neupogen also had a fun side effect: bone pain. (As recommended by my doctor, I took clarityn every day – no one knows why, but it seems to alleviate that bone pain, as well as being useful for my seasonal allergies.)

I had the last taxol infusion yesterday. The staff of Valley Medical Oncology Center came out to give me a round of applause and a certificate of completion. Aww. They were all fantastic. Chemo isn’t fun, but having great people to do it certainly helps.

I can expect the side effects I’ve been having to continue and possibly even get worse for another two  weeks, and the taxol will still be circulating in my body for up to a month. Some of the side effects will take 3 to 6 months to abate; I was especially disappointed to learn that I may not get all my tastebuds back for that long. Altogether, it can take the body up to a year to fully recover from chemotherapy. So I don’t know when I’ll start to feel “normal” again.

What happens next?

I can enjoy the next two weeks of seeing no doctors and, especially, not getting poked with any needles (my old favorite vein for blood draws is now scarred and painful, the decent one on the other arm has collapsed and won’t give up anything now).

On June 25th, I will see Dr Patel, the radiation oncologist, to start preparation for radiation. I’ll need a CT scan, and a form will be made to hold my breast in the exact same position for each radiation treatment. Radiation should start about a month after chemo ends, and I’ll have it every weekday for six weeks. Each treatment doesn’t take long, but…

I’m told that radiation can cause fatigue, especially after chemo, but Dr Labban told me that no one is exactly sure why this is; could be that the radiation stimulates residual chemicals in the body, and/or the sheer hassle of having to be there every damn day is tiring. On the other hand, I’ve already had some weeks where, between infusions, visits, and shots, I have had to be in that building every day. As long as I have the energy to drive myself (hasn’t always been the case, lately), I’ll probably get through that without too much trouble. Depending on how tired I still am from chemo by then.

I’ll have a chemo follow-up visit and blood work mid-July, to see whether my blood cells have recovered, which is supposed to happen 4 to 6 weeks after chemo ends.

The port stays in until after my next mammogram (October), just in case something turns up that means it’s needed again (not a happy thought). It has to be flushed monthly with heparin to prevent blood clots forming in it. At least I can look forward to seeing my wonderful oncology nurses, Diana and Mike, for that.

Radiation should end in late August, then I’ll have another month off (presumably to recover) before I see Dr Labban again to start taking tamoxifen; that’s in pill form, I haven’t even looked at the side effects yet. I’ll take that for five years. I’ll be having mammograms and possibly other tests every 6 to 12 months, but I’d have been doing that for the rest of my life anyway.

So… I’ve completed step 2 of a long process (step 1 was surgery). I’m relieved to have got through it (not everyone does), and I guess it was worthwhile to improve my long-term odds. But, as you can see, there’s still a long road ahead of me.

my breast cancer story (thus far)

You might also like:

Treatment Roundup: August & September Default ThumbnailOne Month Post-Chemo Default ThumbnailChemo and Menopause Default ThumbnailTelephones
breast cancer

Hair

Leave a comment

So… about hair.

Turned out that the anticipation of losing it was much worse than actually losing it.

Before even starting chemo, I went to a shop selling wigs, hats, and prostheses for cancer patients. They advised me to try on wigs then, because, even before hair loss begins, your scalp gets so sensitive that you don’t want anything touching it. (This turned out to be true.)

So I tried on some wigs, and bought one that could pass for a hair cut and color I might actually have had sometime. I have not worn it yet, except briefly to play around and to show people. Before seriously wearing it, I would have to get it professionally adjusted (I have a fairly small head) and trimmed so that the bangs aren’t constantly in my eyes.

But at this point I’ve concluded that I may never wear a wig in public, for several reasons:

  • A wig is basically a tight mesh cap with artificial hair on it. It fits around my head such that its elastic edge has to be over or under the earpieces of my glasses. Either way is uncomfortable and/or distorts my vision, because my glasses no longer sit correctly on my nose. (Yes, I should have figured this out before buying it.)
  • Wigs make your head HOT. And, thanks to both my age and cancer treatment, I am now having all the symptoms of menopause, especially hot flashes. I can go from shivering to sweating in 30 seconds. I am constantly adding or removing layers, including hats. I suspect I wouldn’t manage to keep a wig on for very long. Like Samantha.
  • I don’t have any practice wearing wigs. I would probably keep fiddling with it in a way very distracting to myself and everyone around me. It would just bug me.
  • I’m not used to having hair anymore. The times I’ve tried on the wig, I was immediately irritated by hair falling on my face and getting into my eyes. It’s liberating not to have hair. If it were purely up to me, I might quite happily stay bald. But… a bald woman freaks people out. (Did you know that Sinead O’Connor originally shaved her head to avoid sexual harassment by record producers?)

I can imagine wanting to wear a wig, for the reason Jenny Allen mentions in this monologue: even though it’s obvious to most people that you’re wearing a wig, and they may guess that it’s to do with cancer, wearing the wig is a signal that you are trying to pass for and want to be treated as a “normal” person at this moment, and probably don’t want to talk about cancer. Whereas wearing a hat or going bare is something of a statement. And then you might have to be a cancer evangelist at a moment when you don’t have the energy or resilience to talk about it.

So far, the times I’ve been out in public, I’ve been wearing a cancer hat, and almost no one has said anything about it. I seem to get unusually attentive service in grocery stores (which is nice – the people at Trader Joe’s recognize me and say they’re glad to see me again). Another shopper at TJ’s said to me: “I went through that a few years ago.” “I’m glad to see you’re still around,” I replied. (She had great, thick hair again, too.) Beyond that, I’ve had a few pitying or worried looks. Common as it is, cancer still scares people.

Losing It

But, before I got so philosophical about it, I had to face the anticipation of losing my hair, and that was very upsetting. I had been warned by the literature and the medical people that It would start to go around Day 14 of the adriamycin. Already on Day 5 (Feb 2nd) my scalp became sensitive to a hot shower.

By February 14th, I was brushing out large amounts of hair:

brush

The photo at top, of my pillow, was taken the next day. It was both depressing and annoying to be shedding like a Labrador, and having to clean up after myself with a lint roller and vacuum cleaner. That was the day I had Brendan buzz off my hair (not too short) with clippers:

buzz cut

But it soon began to look ragged, and, as I learned, a newly-balding head is not a smooth, shiny dome:

balding

I don’t know whether the irritation was from chemo or dandruff, but… eww. (It cleared up quickly, since then I’ve had plain scalp shining through).

Not long after, we buzzed it off even shorter:

short hair

My hair continued to fall out. I ended up with some shiny bald patches, but so far I haven’t gone totally bald. Which was actually something of a disappointment: I wanted to do a henna crown. My second chemo regime is taxol, which reportedly can also make you lose hair, but the chemo nurses told me my hair might start to regrow during this treatment. As far as I can tell, it is no longer falling out and is growing back, but very slowly. At this rate, it will be many months before I can pass for simply having a very butch haircut (which wouldn’t be a first for me).

Various tweets about hair covered in my Chemo Roundup: February.

As for the hair elsewhere on my body… my pubic and armpit hair started coming out about the same time my head hair did. Like my head, those areas never became entirely bald, but the hair is still very sparse. I used to shave my lower legs daily. Since chemo began, I’ve shaved a few times, but my leg hair also grows back very, very slowly, and very thin. So, altogether, I’m saving a lot on depilation this year!

I still had eyebrows in late March, but they were mostly gone by late April. Now I seem to have a few thick hairs growing back, also slowly. Some people, in the aftermath of chemo, grow Groucho Marx eyebrows. That would be fine – I could always have them thinned and shaped. But I’m not coordinated enough to draw on non-existent brows with an eyebrow pencil!

One of the side effects of chemo is preternaturally smooth skin. So I have big eyes, a big dome of a head, no lines in my face, no eyebrows, and no hair. Yes, I look like an alien, or a baby. Or, as my daughter said, like Dr. Evil:

Dr Evil

I don’t look at myself in the mirror much nowadays, but… I never did before, either!

June 12, 2015

My head, pubic, and axillary hair all seem to be growing back, slowly. Hard to tell what color my head hair will be; so far most of it seems to be as fine as it ever was, overall pale but not silver, though there are some silver hairs and some darker patches. My pubic hair is coming in whiter, but the early growth is not firmly rooted. Axillary hair is sparse and dark (as before).

I am unhappy to note that my eyebrows are getting even more sparse, and now my eyelashes are starting to go.

my breast cancer story (thus far)

You might also like:

Living with Terrorism Treatment Roundup: August & September Default ThumbnailTreatment Roundup: July Default ThumbnailRadiation Prep: More to Look Forward To
breast cancer

Preparing for Chemo

2 Comments

It somehow works out in my life that, no matter what kind of crisis I’m experiencing, I have expert advice available among my circle of friends. One such is Shridar Ganesan, who became a friend long ago when he married Mithu, whom I’ve known since our study abroad year in Benares, even longer ago.

Shridar is a physician and breast cancer researcher. When my mother-in-law got breast cancer in 2001, he advised us long-distance on the diagnosis and treatment that she was given; it was also he who recommended Dr. Susan Love’s Breast Book at that time, which was why I immediately bought it (again) when I received my own diagnosis.

I also immediately emailed Shridar and Mithu, from Paris, with the subject line: “My turn.” Their counsel and support throughout this has been hugely important – it’s been comforting to have a second opinion on the physicians I’ve been working with and the treatments they have recommended, and to have further expert information about what’s going on with me. Shridar and Mithu: Thank you both!

Jan 15, 2015: Had an echocardiogram this morning, to get a baseline on the condition of my heart before starting chemo because, as the technician said: “Chemo and the heart don’t get along so well.” He was from Byelorussia, and we chatted about traveling in that region. “Russia, Ukraine, Byelorussia all ok, but in China – they’ll just make you disappear!”

Then bloodletting and “chemo teach” at the oncology center. The potential side effects of all the drugs are very scary. The one that disturbs me most is possibly irreversible peripheral neuropathy from Taxol. Discussed it with Shridar, he suggested a series of lower weekly doses over 12 weeks instead of 4×2 weeks.

Port

Power Port booklet

Jan 20 – Port placed. I don’t remember the first half or so of the procedure – as before, Dr Mirza said he was giving me something to relax me, and things pretty much went blank for a while. When I came to, the world was blue. They had told me they would be putting sheets all over me, so that was not a surprise. I was immediately uncomfortable; there seemed to be a roll of towel under my spine, and my left shoulder was twisted back and held with the shoulder blade tucked under, exacerbating a pain I often get from sleeping “wrong.” Eventually I asked them to remove the towel under my spine, but the shoulder was unpleasant until everything was finally done.

I could hear Dr T being not entirely happy with the placement of the port. Eventually, after an x-ray (routinely done right after the port placement anyway, to ensure a lung has not been punctured by the end of the catheter) and a CT angiogram the next day, it was concluded that the port could have stuff put into it, but not aspirated out – not a big problem, apparently. Dr T advised Dr L (the oncologist), and I told the oncology nurse about it before starting chemo, so everyone knows what to expect.

Hours later, this is pretty fucking painful. Hope the Percocet kicks in soon.

Having a lump of titanium under your skin and a foot of catheter through a vein takes some getting used to. At first the port slid against the underlying tissues in a very creepy way. The pain was mostly in the shoulder. When I saw Dr T for a follow-up six days later, she said I should have been taking ibuprofen for inflammation, instead of acetiminophen for pain. That helped, plus some mild yoga and turning my uneven mattress around gave the joint some relief. New, fancier mattress coming from Ikea next week for precisely this reason.

Jan 26 – Met with Dr L. Rescheduled the infusions for Thursdays, so that (I hope) the fatigue will hit mostly on weekends. When we talked about side effects and my concerns, he suggested the lower-dose taxol, as Shridar had, so we’ll do that. Which drags the chemo out to 8 + 12 weeks, but worth it to lessen the chance of irreversible neuropathy.

Jan 27

photo top: What the port looks like four months after placement. It has slipped a bit below the original incision, I assume pulled by the weight of the breast. Note that the port is placed on the opposite side to the breast that had cancer.

my breast cancer story (thus far)

You might also like:

Treatment Roundup: August & September Default ThumbnailOne Month Post-Chemo Default ThumbnailAfter Surgery Default ThumbnailTwenty Years of Being a Woman at Tech Events