When I write, as much as I like to sound natural and I enjoy using a casual conversation-like tone, I'm really totally anal about my product. I mentally organize my writing in advance (even responses to others on Facebook and when texting), I proofread before posting, and I go back to edit typos in a panic that someone may have actually caught it.
Therefore, I've been completely overwhelmed with the idea of catching up on this blog. The longer I spend mentally planning what to say next time I post, the more stuff I have to say and the more overwhelmed I get.
So here I am to just go ahead and type. My idea is to do sub-headings, but even that may not work.
The End of AC
To those of you on the East Coast, that title has nothing to do with the heat. Remember that Adriamycin/Cytoxan cocktail of chemo drugs I was getting in April and May? It was AWFUL. I mean those last two treatments were HORRIBLE. I was brave throughout, taking advantage when people watched the kids but being Mommy for the majority of the time. But those weeks of unending nausea SUUUUUUUUUCKED!!!!!
After the AC final treatment on May 24, my body took almost two weeks to feel even sort-of normal. Again, if you saw me out and about (picking strawberries, visiting Green Lakes, hosting playdates, etc), I would have smiled and said, "I'm fine. I'm on a little break between treatments right now." But really, I was feeling like I was going to puke on your feet and all I wanted was to be asleep. It was hard to feel like I'd accomplished something by finishing the AC treatment when I was still feeling so yucky.
Not only was I feeling sick, but I was stressed about trying out a new drug, Taxol, for the whole entire summer.
Hoping to Be "Most People"
Luckily, on the weekend before starting Taxol, I finally found that I could brush my teeth without gagging. So going into that first infusion, I'd had about 5 good days. Now, all I could do is hope that Taxol would be easier on me than AC. The doctors and nurses kept saying, "This is so much easier for 'most people'" and "'Most people' don't get as nauseous with Taxol." My problem there was that 'most people' don't get breast cancer at age 40. I'm not 'most people' any more. So I worried that Taxol would knock me out just as badly as AC.
A little background about Taxol. There some ingredient in it that's made from tree bark. We all know about allergies to nuts and tree stuff, so Taxol has a high risk of allergies. I could have been sitting there hooked up to this new IV, and suddenly have a rash, my throat swelling and need emergency drugs to make sure I could breathe. They even prop an "emergency kit" next to the IV pole as they administer the Taxol. Comforting, huh?
The night before each of my Taxol infusions, I have to take steroids to try to strengthen my body against this possible allergic reaction. More specifically, I have to take the steroids 6 and 12 hours before treatment, so I have to set an alarm to wake up and take one of them.
On June 15, there I sat, watching the Taxol go into my port, and not feeling any swelling or itching. Whew. Then I went home, waiting to feel sick. Nope. The IV Benedryl (more anti-allergy just-in-case medicine) made me sleep for a while, but when I woke up, I was fine.
I'm MOST PEOPLE!!!
The process was the same on June 22, and again, no nausea!
Neuropathy
When my Dad was dealing with Parkinson's disease for more than a decade, it seemed logical at first to look for support groups for him. Unfortunately, each time he went to a support group, somebody would complain about a symptom he had yet to experience. The next day, Dad would invariably start to feel that symptom. I attributed this to his pessimistic attitude (anyone who knew him would verify that Dad was a textbook pessimist) and giggled at his nuttiness.
Guess what? I'm a nut, too. One of the main side effects with Taxol (besides that whole dying from an allergic reaction thing) is something called neuropathy. It's a tingling, numb feeling in your fingers and toes that doesn't go away and can last for an indefinite amount of time after you finish treatments.
The week BEFORE starting Taxol, my hands started feeling funny. I can't say it's tingling or numbness, but my best description for it is the feeling you get when you raise your hand in class and have to keep it up for a while. It's just like there's not enough circulation there. I brought it up to the nurses at my first Taxol treatment, and they said it sounds like neuropathy, but I shouldn't be feeling it from the AC drugs. My crazy mind was making up symptoms to go with a drug I hadn't received yet.
The neuropathy has gotten a little worse after two treatments. Now it's like that semi-numb feeling you get when you lean on one hand for a long time while reading a book in bed. Unfortunately, I feel that feeling all day, and shaking my hands to get the circulation going doesn't help. But the routine question they ask me when I mention it is, "Can you still do buttons?", to which the answer is, "Of course." So this neuropathy is nothing to worry about yet.
As with the AC, the Taxol may build up in my system and be harder to take by the 6th or 8th or 11th treatment. But for now, I can live with my crazy mind producing neuropathy, as long as I'm not nauseous.
Seven More Days
Now that I've wrapped my mind around this Taxol actually being easier than AC, I willingly went in to the oncology center last Friday (treatments are now on Friday in order to coincide better with Paul's work schedule). I sat down with my laptop and was eager to check off the third Taxol treatment of twelve. Twenty-five percent, baby!
If only life could be that easy. My white blood cell count was way too low for them to treat me (specifically, the neutrophils were below 1.0 somethings per something). The basic answer to the problem is, "Come back next week and we'll try again."
Being that I still have to get a total twelve of these treatments, my end date is now September 7 instead of August 31. Talk about a psychological blow: I've been calling this 12-week Taxol regimen "the summer". September 7 isn't summer!
Not only that, but because of the white blood cell problem, I'll now have to take something like that awful Neulasta. Remember that potent shot that knocked me on my butt for two days after the AC treatments? Yup, more of that. Now, this is a lower dosage version called Neupogen, where I receive just a little bit for each of 5 days after treatment. We're currently trying to find out if the insurance company will let me do my own shots at home, as opposed to having to drive to the oncology center six days a week (treatment plus five Neupogen shots). But the main thing on my crazy mind is that 'Most People' respond better to Neupogen than Neulasta.
Another week, hoping that I'm 'Most People'.
Hang in there. I was one of the "not normal" people, and had that deadly reaction to Taxol with in a few minutes of the infusion. So they gave me Taxol's man made cousin: Taxotere. Also caused me to have terrible neropathy and chemo brain. I fell down the stairs the day after a Taxotere infusion because my legs went numb. So please be very careful. The only lasting side effect that I still have to this day (10 years later) is the chemo brain. Which effects my everyday life and keeps me out of work. But, it's better than cancer! You're doing great, hang in there and stay positive :) You can and will do this!!!
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