Tuesday, September 30, 2008

Quick updates

Quick updates.....
Here's my "radiation purse" I bought recently. I've gotten a ton of comments about it...I'm not exactly the "bling" type, but this really appealed to me.

My leg was looking about this red last weekend when Mom, Aunt Evie, Aunt Jan and my cousin Cindy were here.

We had a great time just hanging out
and talking. Last week the fatigue started hitting me a little bit.
My sleep cycle has been so messed up these past few weeks....I had been taking long naps after treatments (2 hours sometimes) but I stopped doing that and started trying to get to bed by 10:30 or 11:00, which for me is unheard of.
I've been sleeping till 9 a.m. and still kind of draggy in the afternoons, but I'm finally feeling a little more on an even keel than I have been up till now with the emotional rollercoaster slowing down now as we get (hopefully) to the end of this wild ride.

I put the Manuka honey on my leg Friday through Sunday and it looks better this weekend than it did last weekend. However, it has also started itching very slightly, (which is a new symptom) and the top of my incision and a spot where there was a suture sticking out of my leg for a long time started oozing a little bit for the first time. The honey causes a mild tingling sensation, (the article I read about it said it has natural hydrogen peroxide in it) so it seems to be doing something, but it LOOKS amazingly better overall than it did before, and it's definitely healing even though Mike said it probably WON'T while I'm having treatments.

I'm continuing to use the XClair cream which is working really well for me too; it helps with the mild itching (so does the honey) and so far I have no dryness/flakiness or blistering. I'm actually amazed at just how "normal" my skin feels except for the area around the incision which is still kind of stiff. lumpy and puffy. If I can just hold out this week without blistering I'll be SOOOOOOO happy.
Beverly (one of the therapists) called at 7:45 Monday morning to say that the machine was down, so they cancelled their morning appointments. I was kind of glad because I was exhausted that morning. Sybil woke me up at 3, then barfed up a hairball at 6, then I got a wrong number phone call at 7 a.m., then Beverly's call at 7:45.
Best of all, that meant my incision would have another day to heal. The downside is that now I won't end on my birthday and will have to finish up on Monday, October 20. But I REALLY like the idea that I'll only get nuked 4 times this week, and I get the weekend to heal again. They called later and said the machine was back up, but I was on a roll getting kids' choir stuff organized for our first rehearsal this week, so they said it was OK to just wait till this morning instead.

Children's choir starts Thursday; I'm really fired up about that. So far I have received sixteen registration forms and I expect more kids to show up without having signed up. I have a lot of 4th and 5th graders this year and a good number of new children coming in. I've missed the kids choir at St. James terribly these last couple of years, and was excited to teach the kids at St. Monica's some handchimes last year. We'll get to do a lot more since I'll see them every week now instead of just occasionally.

OK, so in a nutshell, radiation side effects in the past week are:
1. Mild fatigue that is somewhat different from before. I'm trying to adjust my sleep cycle to get more done now that I'm less frazzled about this whole ordeal and have gotten used to the routine.
2. Mild Itching on the top of my incision where it broke open and never fully healed before I started radiation.

3. Slightly LESS redness than last weekend which I attribute to the manuka honey.

4. Slightly MORE healed raw spot at the top of my incision (ditto #3)

5. Continued swelling in my leg if I sit or stand too long in one spot. I have to keep it raised or it gets hard as a rock. That has been the case since very early on, starting during my second week.
Things nobody mentions that you don't realize are REALLY draining till you have to do it:

1. DEALING WITH INSURANCE/BILLING QUESTIONS! I spent several hours on the phone yesterday trying to figure out insurance related stuff: my coverage, limits, exclusions, what bills I have to pay and which ones will be adjusted later. I've got two college degrees and this stuff is EXTREMELY confusing. The statements of benefits don't tell you enough detail to even know what the charges are FOR when you're having massive stuff done to you every day. I've gotten conflicting answers from the insurance company and the Archdiocese about some questions that will affect my out of pocket expense. I'm being billed for $20 a day in copays for radiation, which comes to a whopping additional $660 out of pocket over and above my $1500 maximum out of pocket expense which I've already met this year as of my surgery date. It's staggering, and the bills are only just now starting to come in.
2. Driving downtown every day is also draining, and for the past two weeks many gas stations haven't had any gas at all. Luckily I filled up over the weekend but it's scary to think that if you don't get while the gettin's good, you could be stranded on the highway somewhere.
3. Car maintenance and repairs. Had to get a new catalytic converter recently in order to pass emissions, but I am so relieved I DID this year; I had to get a waiver last year. Since I passed, now I needed to get new tires since mine are bald and I've still got three weeks of going downtown everyday and the last thing I need is a blowout. So I spent THREE HOURS waiting for my new tires to get put on the car today. At least I got my songlists sketched out through All Souls Day while I waited, but I think they tacked on an extra hour because I refused an additional $200 repair they recommended.
4. Never knowing how long you'll be there. One day my valet parking receipt said 7 minutes!!! That's ~90 minutes of driving MINIMUM for 7 minutes. Other days, it can be 1 1/2 hours. You just never know, and that's stressful and draining.
Anyway, that's it for now. I still feel VERY blessed that all of this will be over soon, and that even though it's stressful, I'm not in the pain or discomfort many people have to go through to get well. Hopefully I'll stay cancer-free for a LONG time (or forever.)
Thanks again for all your prayers. More pictures soon....

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