Today is Day 2 from my last knock down, yesterday being day one, chemo day. These things are not getting any easier, except that I know what to expect. The mind games are the hardest, very real and some times really scary. Here is quick update of how the therapy and days after are going:
- Chemo day: By the time I get there I am in full on anticipatory mode. My blood pressure that usually runs around 120/75 is sitting at 130/90++, but the nurses and doctors know this is normal for chemo day. I've seen other patients have to be put on anxiety drugs sitting in the chair just to get their chemo done. I get nauseous and will gag like crazy over the littlest thing. The nurses are fantastic and very caring, they do their best unfortunately it is my mind that is making it a miserable experience. After chemo, it takes about 3 hours, I rush home and do the best to get my mind off what just happened. Mainly by working and getting email and all the rest caught up. Then it is full temperature monitor time. I almost went to the hospital two treatments ago, my fever reached 101 which is very dangerous for a chemo patient, but thankfully I fell asleep and woke up a couple hours later at 98, so it worked out.
- Day 2: All in all not a bad day, the problem is I feel better than I actually am. This morning I walked downstairs and it felt like I just ran a 100 yard dash. Even typing this entry is difficult, my mind knows what I want to say, but the mistakes are endless. These next 7 days or so, I really have to be careful that I take my meds, if I miss some then the nausea is intense and the gagging can be really bad. Tonight will start the strange sensory perceptions associated with this chemo regiment. Little things will set me completely off, like taking a leek can be a full on gag fest. The other day my beautiful wife made a sauce, that I love, but for some reason it tasted like a pool towel from a hotel swimming pool, yea that's weird. My teeth are crazy sensitive and peanuts and anything crunchy is out.
- Day 3: Knock down, drag out tired. I'll take a 3 hour nap, in between fits of gagging, and basically sit and be quiet all day.
- Day 4: Tired but almost functional. I usually only take an hour nap, and I used to go for a 1 mile walk, well that walk has ended and I am lucky to get around the block. The effects seem to be accumulating and it is getting to be longer recovery times. The sensory issues are fantastically bad on this day. Everything around me seems hell bent on making me sick and want to throw up. Just thinking the wrong though can really get me going and I have to completely reset my though process to feel better.
- Day 5: Usually starting to come around, but be careful. The morning can be notorious or good, it's kind of a crap shoot, but the afternoons I can reasonably go out side and visit with folks for a while. The real issue is that I don't know when symptoms will hit me. If we are talking and all of a sudden I need to leave, don't take it personal, I just will have this all of a sudden feeling of impending doom and may have to go lay down for a while.
- Day 6: Mind is usually really clear, sensory issues are waning, and I am feeling human again. Still have to be careful, but I am functional for longer bursts and the physical surprises almost disappear as long as I don't do anything too physical.
- Day 7 through 13: Just a gradual climb up to normalcy. The real issue is that this regiment makes you "neutropenic," I have zero immune system. Large crowds are completely out, when I go to Dr. appt's there is no chair sitting, wash hands religiously, hand sanitizer everywhere, stay away from small kids and generally just live in a small bubble that is somewhat controllable from a germ perspective.
My health has been reasonable, not sure what unreasonable would mean at this point, but nothing that has sent me for a hospital stay yet, so that's good. Next week I go in for tests to determine what the infection in my pelvis is and I am having my original biopsy sent to the University of Colorado for a second opinion. Not sure if insurance will pay for it, but we'll see.
So here's a couple of things I've learned form this:
- You can't ever have "too good" health insurance. The total bill for this so far has been over 73K, my total is a fraction of that, but still a very real and savings busting charge.
- Get some kind of disability insurance. My employer has been fantastic, but yours may not be. Working while on chemo is doable if you have the right job. If you make your living through physical prowess you can throw that out the window. Get good insurance.
- Don't tell yourself you won't get cancer. The stats are that anywhere from 30% to 60% of people will get cancer in their lifetime so start planning for it.
- Accept the help from other people. We have had several folks bring meals and I have to say a heartfelt thanks to Angela and Dean, Jenny and Ryan, Cari and Scott, Dave and Kathleen, Jen and Jeremy, Rob and Jen and my wonderful Aunt Betty....your meals have been fantastic and I can't tell how uplifting it is to have your support.
Well that's all for now, when I find out more or have some other sort of major calamity I'll let you know.
Oh yea just one more thing. I always thought that you only lost the hair on your head, well that is WRONG. You lose everything from the tips of your toes to the top of your head. I fact, I'm sort of like this without the 6 nipples and buck teeth.
But oddly enough, my facial hair is still mostly in tact and my eyebrows, while becoming less and less, are still there.
Hope you are doing well. Talk to you soon.
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