30 E-mail: update after treatment #6

6/15/2006

This has been a hard week. If somebody asks, “How are you doing?” I respond, “Not good.”

At this moment I’m doing okay and I think things are finally looking up. The weekdays before this one, though, have been hard because the neuropathy has been bad. It’s funny all the little things that become challenging when you can’t properly feel your fingers and toes. Driving, for example, became a highly conscious activity that I had to do very carefully because I couldn’t feel the gas and brake pedals as well and I couldn’t feel the gearshift as well. My handwritten notes have become suddenly more legible because I have to focus harder to make my fingers work properly to write. Typing got harder. The worst was the mental fog that I found myself in when I didn’t get enough sleep.

Kelric slept through the night Tuesday, so Wednesday morning was beautiful. Sunday, Monday, and last night, however, he didn’t sleep all night long and I started the mornings dazed and confused. I think I finally succumbed to “chemobrain,” a physical condition describing the fuzzy thinking that chemotherapy patients sometimes experience as yet another lovely side effect. It felt as though I couldn’t complete a thought sometimes. I was hard to hold the thread of a conversation because I’d forget what idea I was trying to convey or I’d lose the words to describe my thoughts. I experienced a lesser version of chemobrain this morning and compared my frustration to a toddler who wants to communicate a need, and can understand the words, but goes into a temper tantrum of frustration because he doesn’t yet possess the skills to speak his thoughts. I practically had a meltdown because somebody had left a permanent marker on my tray of dry/write markers at work and I had unwittingly recorded temporary notes in permanent ink on the dry/write board. It turns out that with a lot of elbow grease the permanent ink comes off, but until my board was clean I was mad! And by the time the board was clean I had completely forgotten what I was going to brainstorm about anyway.

I’ve noticed before a connection between my feeling blue and not getting enough sleep. Monday and Tuesday I slipped past “blue” and into “deeply depressed” for a while. I came out of it, but depression felt like yet another weird disconnect in a series of symptoms that have turned the body I’ve known all my life into a stranger. The nausea and fatigue of the AC drugs was bad, but that was straightforward and understandable. This Taxol stuff is a battle on a more psychological front and it’s just as hard as 14 straight days of nausea.

Tara came over Tuesday for a visit and she made an observation I thought profound. She remarked that as one recovers from an injury, such as the knee surgery she recently endured, it’s all the little things they don’t tell you about that wear on your peace of mind. For example, getting into a bathtub after knee surgery is a riskier business than usual. Taking my son to his Montessori school is riskier for me this week because of the challenges to stay mentally and physically focused while driving and to safely carry him in his car seat to the school. I found myself sometimes just sitting in a chair and staring blankly at a wall and feeling perfectly entertained by it.

My doctor’s gamble with reducing the dosage of Neulasta to cut out the back pain paid off. I haven’t had any lower back pain with this treatment’s aftermath. I haven’t experienced the stabbing joint pains, either, though I would take them back in trade for clarity of thought.

At this moment I feel pretty good. The neuropathy has gradually dimmed down today. It’s not gone, but it has definitely faded. My fingertips are unusually smooth, still, but they aren’t discolored like they were yesterday. The skin on my face is unusually dry but at least I’m not breaking out like a teenager constantly anymore. Unlike earlier today, I can sit up and not feel like I’m sliding to one side. At times today it was difficult to walk, as it has been difficult to walk normally off and on most of this week. I just take it slow and lean on walls or furniture and I make it eventually. This perpetual light-headedness feels a lot like pregnancy.

I feel a little guilty because I have complained more after this treatment than I have with the others. I’ve actually sought people out in order to bend their ears and tell them how miserable I felt. I found solace after venting each time and I thank those people for their patience. It’s not fun to listen to someone go on and on, grumbling about a health condition. I appreciate your indulgences to let me grumble. That makes it bearable for me.

Writing about it helps me to cope. It is as though the compiling of thoughts well enough to record them in an e-mail means I’ve somehow processed that information and now I’m done with it. I don’t brood on it anymore. I’ve read that cancer patients who regularly express themselves via a journal of some kind during chemo actually handle chemotherapy better than patients who don’t. I think I’ll choose to believe that one. Thank you for letting me write to you.

Angela

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