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The Port
It’s been a rough few days of recovery. The nurse even told me I have a high pain tolerance and yet I was knocked on my ass for two days. I’m surprised they don’t give you pain meds. They tell you to take Tylenol…sorta works. Turns out there were TWO incisions for this port placement – one up by my collarbone, kinda makes hard to turn my neck. The other incision, lower, is a bit bigger. And then I’ve had to wait 48 hours to shower, so I’ve been feeling pretty greasy and gross. Had to maneuver around in the shower to make sure I didn’t get any water into…
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Pain
For some reason, when I think of “pain,” I sing Bowe. But pain sucks a lot more than Bowie. These incisions are ITCHY, and it feels like I’m ripping them open when I move. After a whole weekend of this, it kinda got to me. Any stressor increases my jaw pain (TMJ), and then the headaches start. Usually, I have a mild muscle relaxer on hand for the jaw pain, but I’m out. So then it was call after call to the nurse navigator, GP’s office, oncologist. Even the hospital (someone else directed me there). And even after all that, they didn’t give me actual pain meds, just my muscle…
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Treatment Plan #2
Lots of information today & made one of the many decisions. We made it to Rochester by 9, I was asleep not long after. First appointment was at 8 with the Mayo oncologist, a lovely Irish woman! We joked that I will definitely need to go there after treatment (uh, duh). The oncologist confirmed the TCHP cocktail was a great option. She went over several other different ways to go about this and how they differ. She’s waiting to see what the skin biopsy says, which may make me a good candidate to get chemo with one less drug (a clinical trial). She also went over possible treatments after surgery…
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Chemo Scheduled
My first “oncology infusion” is a week from Friday. It gives me a little bit more time to heal from the incisions and vaccinations. The oncologist’s nurse ordered the medications I’ll need to take – a steroid that I’ll need to take the day before chemo, the day of, and then the day after. Plus, two drugs that help with nausea. The infusion will last most of the day on Friday. I’ll need to go back in Saturday for a shot (joy!). And a week after the infusion, I have a nurse visit to check “toxicity” levels. The hope is that you recover enough in 3 weeks to get another…
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Skin Biopsy
First things first… If you want to help… You can join this Facebook group. I won’t be in it, but I’ve been assured it’s not there for you to talk shit. 😉 This way, I can filter info through a central line and worry about getting better. Skin Biopsy Results Skin biopsy results came back positive. I was expecting this; that’d be my luck. So, how I process these things are: Take the news calmly. Say “ok” a lot. Finish with “thank you so much.” Text people who I remember to text. ? 5 minutes later…I think, AM I GOING TO DIE? Write a message to docs re: life expectancy…
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Chemo Eve
Life never turns out like I plan anymore. ? This cold kicked my ass a bit. Spent a lot of time resting in hopes I’d at least make it to Evelyn’s birthday dinner. I did! It meant fewer dates which was a bummer. This happens often anyway. There’s always at least one reschedule and the old “my kids are sick, do you want to risk it?” I’m worried that they might turn me away because I’m at the end of the cold. And I’m scared of delays. Can’t control either of these things but I manage to worry about them anyway. Anyway. Evelyn got what she wanted, which was Hyvee…
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Chemotherapy: Round 1
Today started out like a lot of days: my alarm didn’t go off, and instead of getting up at 7, we were up at 8. We rallied quickly and made it EARLY. First up is the blood draw. I opted for my arm – the nurses were very curious about this. The nurse at Mercy where I got my port placed told me I should do an arm draw while I still can, due to the port only being able to take so many pokes. Well, we’re not gonna opt for that again. We waited a bit for the labs to come back. Then around 10 we got into our…
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Chemo Round 1: Day 1
Yes, I am tracking rounds and days. I like tracking things. This is why I had a great excuse to buy some fountain-pen-friendly notebooks and soft leather covers that I just NEEDED for tracking symptoms. 😉 Anything that helps me track is probably a good idea. I do have multiple ways so that I can track them on-the-go. Symptoms Slept pretty well, woke up feeling pretty normal. Coffee wasn’t as delicious as expected. Water is really what my mouth seems to crave. I did rinse once with that dry-mouth rinse. Not sure if it helped or not. Drinking lots of water seems to alleviate that, at least for now. My…
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Day 2 After Chemo
All things considered, I’m doing pretty well. Heartburn/acid reflux seems to be the worst of it, next to the jaw pain (yep!). I’ll call the nurses tomorrow and see if I should just take OTC meds for this or get an ongoing prescription. I do have a bit of neuropathy in my left arm. Moving about seems to do the trick for now. Same thing for fuzziness – I do feel kinda dizzy if I’m stationary too long. I am tired and a little slow, but I did manage to check things off my list today. Drinking lots of water seems to help for dry mouth and hunger pains. Food…
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Toxicity Check
I’ve been hanging in there. It’s been kind of a rough week but I’ve been mostly on top of my symptoms. Today I went in for a toxicity check – yeah, they want to make sure the chemo isn’t killing me. Got blood taken from the port, which is a HELL of a lot better than from the arm. Had an enjoyable chat with the lovely nurse and then waited for a while to meet with another lovely nurse, who prescribed me a few things and then set the next round. Now let me impart the wisdom that the chemo nurse gave me: LISTEN TO YOUR DOCTOR. There are a…
