Saturday, April 25, 2009

Morning birdsong

This morning I had my usual day 5 of cycle early a.m. insomnia. Laying in bed, deciding whether to get up or not, I heard a whippoorwill. I have never seen or heard one before, but the song was quite distinctive. And according to a short but seemingly well-referenced Wikipedia article, they are nocturnal birds whose range includes my location.

Hearing that song just made my morning.

Human granulocyte colony-stimulating factor

After my five days of chemotherapy, I get Neupogen (also called G-CSF) to help my bone marrow recover its ability to make neutrophils (bacteria- and fungus-eating white blood cells). White and red blood cells (among others) grow in several steps from stem cells; the chemotherapy does not kill the stem cells or the adult blood cells, but rather the steps in between. Adult blood cells normally die and are then replaced by younger ones; with chemotherapy disrupting the pipeline, though, blood counts drop lower and lower until the stem cells have had enough time to start over from scratch. The day with the lowest counts is called a nadir.

I get the Neupogen (subcutaneous in my abdomen area) every day until after my neutrophil nadir. My ANC (absolute neutrophil count) is always lowest on day 12 of my cycle, which works out to nine shots of Neupogen (cycle days six through fourteen). I suspect I'm actually good to go after eight shots. But confirming that would involve having bloodwork done on a Sunday, which I have not been motivated to pursue.

Last week, I came across this article on the EPOCH-R regimen, which says, "The ANC nadir was invariably observed around day 10–12 of treatment." Now I feel kinda behind the curve: having my nadir on day 12, when others are able to get that over with by day 10.

Neupogen has been on my mind more often lately, as just last cycle I did some of the injections myself. My oncologist's office normally has the nurses give all the shots, so I trekked into the office every day I needed the injections (including two weekends of each cycle). My last two shots of cycle five, though, I asked to take home and give to myself, and I'll do the same for these two weekends of cycle six. It's kinda neat to have a bag labeled "biohazard" in my refrigerator (the shots have to be kept chilled).

The manufacturer's directions for injecting Neupogen warn of hitting a capillary. If this happens, they say to discard that syringe and try again. My oncology nurses don't do this, they haven't had any adverse events from it, and at $350 per syringe I can understand the failure to follow this recommendation. The manufacturer's directions also specify either a 45º or 90º angle for the injection. All but one of my oncology nurses gives it at a 90º angle; after some experience with the 45º method, I found that it was more painful. So my own technique is the same as that of most of my oncology nurses: alcohol swab, straight in 90º, give the injection without checking for blood return.

It's fun to get the hang of this stuff, but I will be so glad when it's all behind me. I hope that time comes soon.

EPOCH+R, round six

In my second and third cycles, my heart rate would stay around sixty during my five-day chemotherapy infusion, then climb up a little over one hundred for a week, then drop back down to the eighties before my next treatment.

In cycles four, five, and six, my heart rate has been much more variable during chemotherapy (sometimes as low as sixty, still, but other times as high as 120). And in the week after (at least in cycles four and five), I've occasionally found my resting heart rate at 150.

I complained about this to my oncologist, and also let him know that light workout tapes bring my heart rate into the 170-180 range. He said he'd like to see my heart rate stay under 120. If my resting heart rate is elevated, he recommended nothing more strenuous than walking. He also sent me for an ECG and echocardiogram (ultrasound of my heart), both of which were fine.

I'm not thrilled with the high heart rate and my onc's disapproval, but the ECG and echo results are reassuring. Considering how much better I've felt these past few weeks (versus the previous weeks when I skipped exercising), I can't see myself giving up my workout tapes.

My onc did say that dehydration can contribute to an elevated heart rate. I've been having swallowing aversion and resulting low fluid intakes during my first break week; my first break week is also when my heart rate is the highest. Interesting. I don't know if my subconscious decided to run with that suggestion or what, but my fluid intake during treatment this week was 11-12 8-oz glasses a day. It hasn't been that high since my very first cycle; I was surprised at how consistently thirsty I was every day. It seems likely I'll have the swallowing aversion again this coming week; if so, I'm going to ask for IV fluids from my oncology nurses. That would be a simple enough thing to take some strain off my heart.

The increased fluid intake resulted in more nighttime restroom trips; the past few days these have been accompanied by buzzing/ringing in my ears (not the typical single tone of tinnitis, but more like a rainstorm). Friday morning when I first got up for the day, the ear sound was particularly strong, and I actually felt faint, which has not happened at any other time in my treatment.

Back to planning for the near future, I now have a numbing mouth wash to use for tongue pain. It seems likely it will again been severe enough to interfere with talking and eating painful. Apparently this kind of tongue pain is called stomatitis, although most texts discussing stomatitis talk about mouth sores (which I have not had). An article on EPOCH-R says stomatitis was "uncommon", but it happened enough to make their toxicity table, at 12% of cycles. The text of the article says stomatitis typically occurred in later cycles, which has been my experience. The Oncology Nursing Society says stomatitis may correspond with the white cell count nadir (lowest number of white cells), which has also been my experience.

Other things to look forward to this week: general weakness and bone pain. I think the weakness is what is called a "steroid crash". Lymphoma patients getting a more common regimen called R-CHOP get chemotherapy for one or two days, except for the steroids which are given for five days. They typically have lots and lots of energy and sleep very little on the steroid-only days; when they stop the steroids, they crash. I get chemotherapy for all five of my steroid days, so I don't really get the steroid "high". But I think stopping the prednisone still makes my body go, "What? I have to make my own steroids now?" and my increasing weakness these next few days is a "crash".

The bone pain last cycle was not nearly as severe as cycles one and two (before my chemo doses were escalated). But it woke me up for four nights in a row to take more pain meds; in cycles three and four taking 1300mg of acetaminophen before bed lasted me all night long.

Whew. I think I'm written out on chemotherapy for a couple of weeks (this blog has been a helpful therapeutic tool). On to happier things!

Monday, April 20, 2009

We have a roof!

Well, OK, the roof on our south living room was up two weeks ago. But I just now got around to posting the pictures, so here they are:

South living room (east)
South living room (west)

In the lower picture, the sunny spot to the left is our new back door (we won't have to go through the kitchen to get to the back yard!). The middle area will house a woodburning stove, and the room to the right is a competitor for world's smallest 3/4 bath.

Our porch rebuild is also still in the framing stage:
Porch construction

And we have a bay window in the kitchen:
Kitchen bay window
I had the azalea (in back of the photo) for not quite three months before I killed it. Let me recommend the cyclamen (the one with flowers) to fellow brown-thumbs, though: it has managed to not only survive my ministrations the past five years, but bloom through them.

Back to the topic of roofs: our contractor has now fixed the damage from a tree falling on our house last summer (broken eaves, mangled gutters, damaged shingles). Since it rained all day yesterday, I was very appreciative of having gutters that worked.

I'm quite happy with how far our contractor has come in the six weeks they've been working. Maybe six more weeks and they'll be done? I guess I'll just have to wait and see!

Saturday, April 11, 2009


I think people tend to compare growths in our bodies to spherical objects. A coworker who had a painful fatty deposit in his upper arm described it as golfball-sized. Another coworker whose wife passed from ovarian cancer described the tumor at the time of diagnosis as grapefruit-sized.

My tumor was never really even sort of spherical. I was describing it as pear-shaped after my first meeting with my oncologist, due to it being thinner in front of my heart and thicker to the right of my heart. My father has described it as potato-shaped when giving updates to his relatives.

After my last CT scan, I was describing the current dimensions to the partner. "I had a CAT scan," I said. "Meow meow cat scan?" he asks. "Was it bigger than a mouse?"

That conversation lasted all the way through dinner. We decided that while it was very much shaped like one, it was bigger than a mouse. Still, it is smaller than a hamster.

The kind of cancer I have leaves scar tissue behind; I will always have a residual mass. Now I'm going to go through life with the image of a small rodent having made a home in my chest. Ha. Thanks, husband.

Tuesday, April 7, 2009

Ballpoint idealism

In high school I was a cashier at a Dip 'n Dots stand. I never had to bring anything to work except myself; my supplies were at work. Including pens. During my first two summers of college, I got internships. Pens were always around.

The summer after my junior year, my pen ran out of ink, and there weren't any other pens. I started asking the supervisors for a pen, and ended up going around the entire office of four or five engineers. One of them did scrounge up a writing utensil for me, but it really was scrounged - out of the drawer of an abandoned desk or something. Not out of a supply cabinet as I had expected. They all seemed amused that I was asking for a pen, too, and I realized that they brought their own pens to work.

I felt really strongly that my workplace should provide me with writing utensils, and it was a mild shock to realize that not everyone felt that way.

Since graduation, I have continued to use pens provided by my employers. I never had a repeat of that episode at my internship; pens have just been supplied.

This morning, I talked with the accounting assistant about the pens they have now: they skip. (I suspect due to the oil that gets on many of the documents we use.) For years, my company has offered gel pens that do not skip, but we're out. The assistant seemed distraught that the other pens weren't working for me: "But the gel pens are so expensive!"

I knew we were having financial difficulties; I hadn't thought about them as extending to office supplies. I don't want to feel like my need for a pen was the tipping point in our company's decline; her distress was almost enough to make me consider buying my own pens, as do a number of my coworkers.

I don't think I'm ready to give up that ideal. A woman's got to hold on to something during hard times, and apparently for me, that something is a ballpoint pen.

EPOCH+R, round five

During my second break week of round four, I never felt good as I have in past cycles. This run-down feeling continued into my infusion week for round five, and Monday, Tuesday, and Thursday I just dragged through. Why I felt good Wednesday and Friday I'm not sure.

Our living area was rearranged a few weeks ago due to our remodeling, and my exercise space was one of the victims. During my first three rounds, I did two or three easy workout tapes during each break week. Not exercising during my break in round four is a top suspect for why I haven't felt so hot the past two weeks. I got my husband to rearrange again so that I could get back on the exercise bandwagon. Hopefully this will make the next round easier on me.

My fluid intake has been low again this cycle. I complained of it to the nurses last week, and they started giving me a bag of saline while I waited for them to mix up a refill for my pump. My normal fluid intake is water and a variety of tea flavors (mostly herbal). On these days when my thirst isn't working right, I've found that flavored water, or just adding lemon juice to water, or having coffee instead of tea makes it go down a little easier. Still, it's a struggle to keep my intake at 3-4 8-oz glasses a day. During round four my thirst started working normally on Friday of my first break week. Having to think about fluids so much is tiresome, so I'm looking forward to drinking becoming an automatic habit again.

Keeping on top of nausea medications is important. Like round four, the IV medication they gave me in the afternoon plus a pill in the morning (promethazine) kept my stomach happy during round five. I forgot the morning pill one day though, and besides being uncomfortable at work all day, the IV meds didn't completely take, and I needed a pill that evening.

The Neupogen is making me a little more achy this cycle than last: it's mild, but I needed to take Tylenol to get to sleep last night. The painful swelling from the steroid withdrawal has not been as bad this time; I'm not sure why, but am grateful. The tips of my fingers feel sorta numb off and on, but no tingling and no pain, and the muscle cramps in my legs, feet, and forearms that I had the first three cycles seem to have resolved: I attribute this to my lowered dosage of vincrinstine in rounds four and five.

Currently, my esophagus tingles, my tongue hurts (not to chew or swallow, just a mild ache), and it hurts to take deep breaths. Of these, the esophagus tingling bothers me the most, and makes eating uncomfortable. I've talked to several of the oncology nurses about this (today, and also when the same thing happened last cycle), and they say no one has ever complained to them about esophagus tingling before. Theories include neuropathy (like the tingling in my fingers) and something to do with the vagus nerve (which has some relationship to swallowing... and also to heart rate, which my heart rate is over 100 most of this week). They say as long as it goes away (which it did last cycle) it's not anything to worry about. So now, just to figure out what to have for dinner.

Saturday, April 4, 2009

Putting the "DA" in chemo

As has happened as I complete most of my treatment weeks, I woke up around 3am this morning and could not go back to sleep. Going straight from sleeping 10-11 hours a day to insomnia is always somewhat jarring; fortunately, the insomnia has never persisted beyond this one day.

In the meantime, I've been trying to make the best of it by doing research on the internet. I came across an interesting comment on the regimen I'm getting, which is a "dose-escalated" regimen (DA-EPOCH+R). If my blood counts (white cells, red cells, and platelets) tolerate a dose well, my next cycle I get more of the E,C, and H drugs.

According to this study, clearance of these chemotherapy drugs gets faster with successive cycles, especially in younger patients. Apparently our bodies can learn how to get certain poisons out of our system. Pretty neat. It does mean, though, that when we want poisons in our system (e.g. for cancer treatment) that it makes sense to increase the dosage over time.

So, my insomniac brain just thought I would share.