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Mid-May 2014: Chemo Side Effects

ejourneys's picture

Somnolescence (copied from blog entry dated May 12, 2014)

We've had a very quiet weekend.

In addition to overnight sleep, I clocked two 4-hour naps on Saturday and two 2-hour naps on Sunday, plus another 90 minutes of bed time due to some digestive challenges. I'll just say I'm very thankful that I had picked up organic ginger tea prior to chemo, and that M had reminded me of it.

She and I are like two zombies passing in the night -- or at high noon; it doesn't matter. My chemo-induced fatigue gives me new insights into her MS-induced fatigue. Chemo fatigue has been described to me as "sudden and bone-crushing" and that is accurate. We can be seen shuffling to and from bed at any hour as our bodies dictate. We were in sync on Saturday night, ready to snooze at the same time. It was sweet.

I've continued light workouts on my mini-bike because exercise helps to combat fatigue. It's a trade-off; I don't want to burn too many calories because my appetite is still not up to snuff. Fortunately, I have not yet needed Ondansetron, which took over anti-nausea duties after my three-pill Emend pack was emptied on Saturday. At most I have felt some queasiness, resolved by sips of water, bits of food, movement, and much burping -- just as I had under Emend.

Last night's digestive challenges had come in the form of cramps and bloating, which would have had me concerned had my constipation continued. (I'm not back to baseline there, but I've made good progress.) Fortunately that was resolved with some bed rest and gentle massage, followed by the ginger tea.

Edema continues to decrease. My weight had shot up by five pounds overnight after my first chemo infusion. As of today it has dropped back down by half. My water consumption has leveled out at 13 glasses (104 oz.) per day; at least 10 glasses are recommended. Water consumption and edema vs. constipation is another trade-off.

Unless I have cause to call the oncologist before then, I'm back at the cancer center on Thursday for blood work and consultation. My side effects report (now with Excel graphs!) currently covers four days in five pages, but that includes space for the graphs and a detailed inventory of my food consumption. I become my own research subject and am easily fascinated by details not suitable for polite conversation.

M's scientific training also comes in handy, making my current condition easier on both of us. I also make sure to remind her that my various all-purpose sighs, occasional monotone, and delayed responses have nothing to do with her. That sets her mind at ease and increases my physical comfort. "Do we have enough resources to engage in this conversation?" is a frequent consideration in the course of our day.

My mood remains good, even if I might seem listless (which is to be expected). I give myself the time and space to deal with all this, so as not to feel under any pressure. Being able to do that is a blessing in and of itself. So far today I feel slightly less fatigued (only one 90-minute nap taken by late afternoon). My appetite seems better than it was yesterday.

Based on this past weekend, I now have an idea of what to expect between chemo infusion and the next day's Neulasta shot to rebuild my immune system: They are a one-two punch. The rate at which energy is recouped differs considerably from person to person, and each new chemo cycle acts on an already-decreased energy reserve. (Fatigue from chemo can last for months or years after treatment.) During chemo I undergo, at the very least, once-weekly blood work. If chemo knocks too much out of me, my treatment gets tweaked.

My port insertion site continues to heal as well. I've been very thankful for all the planks I did prior to chemo, because I've been using my abs to get into and out of bed. I use a hand to support my head, which decreases the use of my neck muscles around the incision site.

I use quite a collection of pillows these days. In addition to my usual head pillow, a body pillow against my left side lets me keep my left arm elevated (since it's now at risk for lymphedema) and keeps me from rolling onto that side because my tumor incision site is still healing. I elevate my feet on a king-sized pillow to treat chemo-induced edema. Fortunately, my fatigue makes it easy for me to sleep solely on my back. In a stroke of very good luck, we had gotten new beds in January (replacing beds about as old as I am), only a month before my regular screening mammogram had found the tumor.

Almost at Baseline -- For Now (copied from blog entry dated May 16, 2014)

My side effects report is boring now. That's a good thing.

Wednesday marked my return to my accustomed energy level and also marked my first excursion away from the house following my Neulasta shot the preceding Friday. I took M to her dental appointment (and caught up with the staff there), then made stops at the post office and the market.

My energy return also marks the time when typically one's immunity from chemo infusion is at its lowest. That means I need to avoid crowds, and especially people with colds or flu or who have recently been immunized. Normally a trip to the dentist means a visit to the nearby mall, but I didn't want to take that chance -- especially since my blood wouldn't be tested until Thursday. Compared to my days of deep fatigue I felt great, but I also knew that I was immuno-compromised.

I did up this badge for myself:

 I've attached it to my shirt with paper clips because I need to also avoid cuts and scrapes to the best of my ability (and treat them immediately with antiseptic and a clean bandage if they occur). I don't want to mess around with pins if I can help it. I can point to the badge when I back away from my usual hugs and handshakes.

My edema and constipation are currently history and I've returned to my baseline weight. My appetite is back to normal. I still feel occasional queasiness (especially after just awakening), remedied with sips of water. I still need to drink scads of water (at least 10 cups a day) because dehydration remains an issue, especially dry mouth.

My second chemo infusion occurs in about two weeks if all goes well and will ramp up my side effects again. Lather, rinse, repeat. Or in my case, lather with a mild soap, rinse with warm rather than hot water, and pat rather than rub dry.

I am waiting for my hair to fall out, which is pretty much a certainty with the type of drugs I'm getting. I estimate that will start to happen within the next two weeks. I last had a haircut about three months ago, so I'm pretty shaggy at this point. Electric shavers rather than blades are recommended -- again, to avoid the possibility of any cuts -- and since I don't have an electric shaver (and don't want one) I am giving my facial hair free range. Hair loss tends to mean all hair, so any excess growth should be short-lived. I'd have my head shaved, except that I've had a sebaceous cyst on my scalp for decades and don't want to risk that getting cut. The little kid in me fidgets: Are we bald yet? Are we bald yet? Are we bald yet?

My blood work on Thursday was pretty good, all things considered. Preliminary results show almost every reading still within normal range, though skewed away from baseline. (I expect more results to be available in a few days, which I can then access online.) The one outlier is my white blood cell count, which was a little low prior to chemo and which remains generally unchanged. At this point, it's not a cause for concern.

My understanding is that in general, chemo infusion decreases immunity to a lowest point that occurs about a week after infusion. By that time, the Neulasta shot kicks in sufficiently to build immunity back up. Each patient is different, and I'll receive a graph of my own immunity curve once enough data are in. As it is, I enter my lab results over at Patients Like Me, which generates graphs for the so-far 33 tests performed on me for which the site has categories. My blood work includes an additional two tests that the site doesn't currently cover.

Yesterday's appointment at the cancer center was with the ARNP. My 9-page, color graphics-enhanced side effects report for Chemo Cycle 1 Week 1 was a hit, and the nurse told me that the oncologist's assistant loves that kind of data. (The oncologist's assistant is terrific -- he is very enthusiastic about his work and I think he is surgically attached to his laptop. I bumped into him while waiting for my PET scan two weeks ago and he immediately accessed some info for me. Then we chit-chatted about cancer research.)

While at the cancer center, I learned that Humana has dropped the facility. This does not affect me personally; I have a different insurer. But it makes my blood boil. I asked the staff if patients not insured by Humana can still sign the petition and was told I could, so I added my voice to the protest.

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