Sent: Monday, October 7, 2013 10:24 PM
Subject: Week #01 Post Chemo
Tuesday: Still yuck. Dizzy, nauseated, hands trembling, mind racing...and! Avoiding cold objects (or wishing I had) as though they will stun me. Which they do--repeatedly--because I have ZERO short-term memory. It was ridiculous the number of times I reached for something that I knew was cold. One split-second after grasping said object, it went crashing to wherever gravity sent it. I'd shriek "AAAIIEEEE! Why did I DO that?!", followed by maniacal hand movements (imagine drying your hands without a towel by repeatedly flicking your wrists) to stop the stinging sensation. It was very painful! Mostly, I was in bed staying away from the cold objects. It was not a fun day.
Wednesday: The Worst Night Ever. The day started out OK. My plan was to bring the three boys with me to the clinic, since this would be a short visit to remove the harpoon from my medi-port, thus freeing me from the portable chemo pump. The boys packed themselves into the car, and I backed the minivan out of the garage. But I got confused. At the bottom of the driveway (we live on a hill), I couldn't figure out why my hand automatically reached for the visor. Then I realized, "Oh, the garage door opener is usually clipped here." My goal was then to ask my 11 year old son to, "Please run up the driveway and close the garage with the keypad". Those words would not materialize, however. I could picture an image of the opener as it lay on my kitchen counter (splayed open and waiting for a new battery), but no words were produced. Eventually I said something like, "Use the thing to [waving a finger at the garage] go thing". Thankfully, he knew what I meant. The kid must be psychic.
Driving was going great, I thought, until the pump started beeping! Really? Now? I pullled over to the curb and stopped the car. After unzipping the not-lovely black polyester carrying case, and finding the "Stop" button on the face of the pump, I push the button. Success! ...for about five minutes. The pump kept beeping and beeping, warning for most of the drive that the reservoir was almost empty. I kept pushing "Stop" and it kept not stopping. I even held the button down for a count of twenty, thinking that this was the secret, but no. More beeping. I ignored it.
[Arrive at clinic.] We were the only visitors. Relief. Last time, the waiting room was full of not-feeling-good people. I did get permission beforehand about whether or not I could or should bring the boys on short visits like this one, but it was still comforting to know that their antics would only be bothering the staff (sorry, staff!), and not any patients. The little ones busied themselves with plastic linking toys; the bigger one drew pictures of video game characters. I was ushered to the back.
Still wobbly. The nurse tore the sticker-dressing off of the harpoon in my chest, and then yanked out the harpoon. OK, it wasn't quite that horrific, but that's what it seemed like. I didn't watch. Too squeamish!
The oncologist wanted details, details of the past two days. I gave her details. She offered no explanation for my thumb's early, though temporary "demise" of the night before. More things happened, but--heh. They're gone. Memory. It's got some recovering to do, still.
We made it home O.K., but around dinner time things got ugly. I think that it was due to the bright sunlight bouncing around the surfaces in my house, and probably coaxed along by gnawing hunger (someone explain to me how a person can be both nauseous and hungry, by the way?) that triggered the most grisly, terrifying migraine aura I've ever had. Please, God, don't let this happen after every treatment! I was literally half-blind for the better part of an hour, and could do nothing but curl up in my bed praying that the headache I knew was coming, wouldn't make me vomit. It didn't! Advil took the edge off, and after a while I was able to sleep. Peace.
Thursday: Two words sum it up: intestinal difficulties. Not dwelling on it. Another bad day.
Friday: New strangeness! Inflamed gums on the lower left. But wait. Can't explain this one. Drank more fluids. Stayed in the recliner most of the day.
Saturday: Symptoms: Gums huuuurt, swollen lymph nodes under jaw, and pain shooting into my ear. Chills happened later in the afternoon. Fever reached 99.5. Fluids. Rest. Prayer. Fever broke an hour (?) later.
Chills are not good at all. Chills mean "fever" and I've been warned about a dozen times that "any fever of 100.5 degrees or more means you call me (hematologist) immediately no matter the time or the day, and I will send you to the E.R." Scary. He even wants me to record my temperature daily...I guess in case a fever sneaks up on me? I missed the opportunity to say, "Ha! I'm way ahead of you. I have YEARS of temperature data." (It's a Catholic thing.)
Sunday: Mass! Mass at my own parish. Welcome Home! It was the best. Normal things happened! Also the best. Played spades (card game) with the family all afternoon and when the weather broke, went for a walk with my husband, sister, and youngest kid. Awesome! Got rained on during the walk back, but it was fabulous to be outside, walking again. Normal! Normal things happened. I miss normal. I love normal.
Monday: I bounced out of bed. Energy, huzzah! At the clinic that day I had blood drawn (via needle in the arm; not harpoon in the chest--they can do that--ack!) and various other tests, measurements, etc. etc. Reviewed with the doc all the weird things (and much more) related here and took notes on New Things To Do after the next treatment. It was a long appointment. My eyes are still very sensitive to light, but there were gloriously heavy, gray clouds covering the sun on the drive home from the clinic today. Almost not even wobbly at all. Iron is low.
Treatment Number Two in one week. Doc said to expect the fatigue and neuropathy* to get worse with each treatment, and the nausea to remain about the same (to be controlled w/meds). One treatment down! I know better what to expect for next time. Very, very thankful for a week "off" between treatments. It's difficult to wrap my head around the fact that chemo is the "good guy" when it makes me feel so sick.
LOTS to be thankful for, including people who put up with these crazy-long updates :)
Thank you for praying!
Celine
*Neuropathy A condition affecting the nerves supplying the arms and legs. Typically, the feet and hands are involved first. If sensory nerves are involved, numbness, tingling, and pain are prominent, and if motor nerves are involved, the patient experiences weakness.
At this point, neuropathy was only affecting my hands, and only when they were exposed to cold. For the first several treatments, they would return to normal a day or two past treatment-day.
At this point, neuropathy was only affecting my hands, and only when they were exposed to cold. For the first several treatments, they would return to normal a day or two past treatment-day.
Chemo wiped me out each treatment-week both mentally and physically. My schedule--my entire life--was consumed with chemo treatments: getting to them, enduring them, and mitigating their consequences. I slogged ahead to number twelve, which was still miles away.
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