Sunday, October 26, 2008

Radiation is finished

Quick update, and then I'll write more tomorrow with pictures. I finished radiation on Thursday, Oct. 23, (not Oct. 20 as I had expected.) I found out on my birthday that I was scheduled for 7 weeks, not 6 1/2 as I was told at my consultation. I was devastated, and cried most of the day since my leg was starting to blister by then and I knew that having radiation four days the next week would be significantly worse than just ONE.

As of today the wound in the back of my knee is getting larger, as Dr. Godette told me it probably would. It really hurts now to either straighten OR bend my knee at all, and it was more comfortable after surgery than it is now. Starting with this post, I'm providing an outside link for those who REALLY want to see what my leg looks like (not for the squeamish) rather than subjecting everyone to it in this blog.
Click here for progress photos past 10/24/08:

Here I am with my certificate congratulating me on finishing my radiation therapy, signed with good wishes by most of the people in the radiation oncology department. That's Mike, me, Beverly and Derrick in the photo. I broke out in hives all over my body the night before my last treatment and it was really hard to sleep; it's almost like I was having a premonition that something was going to happen. Unbelievably, Beverly called just as I was leaving the house to tell me the COMPUTERS WERE DOWN!!! I was horrified. Last time it was the machine, which was fixed fairly quickly. It took about two hours for them to get the computers working again, and they said although they were "running slow" it was safe to come in. There was no way I was going to extend this torture another day, so I went in. As of November 3, (when I updated this older post) my hives have finally stopped, although they tormented me, especially every night for about a week. NOTHING helped--hydrocortizone cream, topical or oral Benadryl, Xlcair, or manuka honey. The hives made me completely miserable since I was itchy all over my body--arms, legs, and all over my back, on TOP of the pain.

The stage I'm in is the worst phase of skin toxicity, which is moist desquamation. There's an easy to understand article at this link.

Management of Skin Toxicity

Tuesday, October 14, 2008

Pictures from October 14

Here's what my leg looked like on October 14. It's far worse now (I actually posted this on the 27th.)
If you click on the pictures you can see them larger (yes, but why would you WANT to?)
I'm doing this to document what happens in radiation therapy. I get 1.8 Gys (Grays) per day, and my total dosage including the "boost" I got during my final week was 64.8 Gys. The wounds on my inner knee are from where I removed paper tape that was holding gauze pads to the back of my knee. When these pictures were taken, the triangular wound on my inner knee actually bothered me much more than the back of my knee. It was hard to sleep on either side because it hurt so badly (even covered.) That delicate skin was where the beams exited my leg, but it never hurt or looked blistered prior to my injuring it by removing the tape.

Sunday, October 12, 2008

Final stretch...

Long time no write....

I started having some side effects since my last entry--most notably, itchiness (and bitchiness) the first week of October and unexpectedly fragile, blistered skin this past week, compounded by sudden episodes of crying caused by emotional and physical exhaustion and some fear of what's going to happen next to me, I guess. The itching was fairly mild the first few days of October, but on Sunday night, October 5, I was rolling back and forth an itchy fold in the crease of my knee near the top of my incision that was driving me crazy, and it turned out to be a deep blister, which popped suddenly. It didn't hurt, but I was really surprised because the skin didn't LOOK thin like a blister. The good thing is that the puffiness went down and it didn't itch anymore, but I was taken aback that I didn't know it WAS a blister, and now I was going into my second to last week of radiation with exposed, open skin.

Mike wasn't around when I was there for my treatment Monday, Oct. 6, so Beverly painted the silver nitrate they mark me with right over my open blister, and THAT burned me for the first time, since she was a little-heavy handed and the skin was already raw, so that created a cross-shaped (how ironic!) burn that actually felt and looked charred for a couple of days right in the crease of my knee. Lovely. Because the skin is OPEN now, it rubs against itself and is uncomfortable every time I bend my knee. I am grateful that this development waited to develop when there were only two weeks left. The wound oozed all week, and is only just now healing a little as of 10/12/08. I'll need to take a picture of my leg again soon; another odd development is along the incision, where you can see dark round spots which may be where the sutures were. There only used to be two, but now there are four, evenly spaced. They're kind of like scabs, but it may be discolored scar tissue; I'm not sure.

This past week has been tough mentally and physically and emotionally as things get busier at work and I'm getting more tired from the radiation. Heather and Joya are finished with their treatments, so the familiar faces are gone in the waiting room, although I've been talking with some new people. Heather has to have her second surgery on October 27, so she'll be in my prayers for a successful surgery that won't require any more radiation afterwards.

My sleep patterns are still out of whack, and I've been having anxiety attacks or something at night where it feels like I forget to breathe and I have to take deep breaths to remind myself to get enough oxygen. Two acquaintances from my past who were around my age died last week (one suicide, the other was ANOTHER (probable) suicide; it was a one-car wreck and he was long-term depressed and an alcoholic.) Maybe their deaths have hit a little too close to home for me right now. Two other people I know lost their jobs within the past week. My IRA is only worth 60% of what it was when I bought my house in March, and that's the only retirement savings I have. The bills are rolling in and there are CO-PAYS for radiation that will be a total of $660, above my out-of-pocket limit of $1500 which I've met, but haven't really even begun to pay out yet. I've needed new tires and car repairs, and gas was an average of $4.29/gallon during the majority of my 6 1/2 weeks of radiation. As of today, it's "down" to $3.29. woo-hoo (use of all lowercase here is intentional.)

I had nightmares at least twice last week, which is extremely rare for me. Bad guys are trying to kill me and I can't move very fast to get away from them because of my leg. The second one was like a continuation of the first from a couple of days before that, but the recognizable surroundings were filled with elements that had been vandalized in the second dream--the safety features were gone, like locks on doors were broken, doors were completely gone, the keypad to my garage had been stolen. I interpret that as though everything that WAS familiar has changed now and my health (or maybe my skin) isn't "safe" or providing the reliable protection it always DID up till now.

An internationally known speaker, Christopher West, came to church over the weekend to lead a seminar on Theology of the Body, and I played for the opening Mass on Friday night, but I didn't take a nap on Friday and knew my leg was going to be really swollen/stiff by the end of the night since it already WAS when I left the house. I had to leave the seminar Friday night before the first break; my leg was so swollen and stiff by 8:15 that I could hardly bend it at all and the skin and tissue in my calf was almost completely numb.

I'm also having new side effects I didn't have before a few days ago. Although you can't tell by looking at it, my skin started to blister Friday night; it was really burning for the first time, and Saturday morning at about 7 a.m. I accidentally took a chunk of skin off where I had no idea it was so sensitive or thin. (I've been using paper tape to attach gauze pads to the back of my knee where it's been oozing for the past week, but it's never even hurt or felt sensitive at all where I put the tape prior to that morning, and it doesn't LOOK blistered.)

I think I'm going through some of the other stages of grief now. Maybe I've been in denial this whole time after all; I was really irritable the first week of October, and this past week I've been really weepy and emotional. I've been crying on and off at the drop of a hat for the past three days now.

I'm getting a little nervous and freaked out now since weird stuff is happening without warning, and my skin is getting less of the concentration of the beam than the tissue below it (so I hate to see what's happening an inch BELOW my skin....) Even though I only have six treatments left, these last ones will be increasingly more concentrated towards the tumor bed than before (they call it a "boost" and a "shrinking field") and they said the side effects will continue to get worse for about 2 weeks after I finish radiation before it starts getting better. I keep telling myself this is just a minor little test, at least it's not chemo, and Jesus suffered and died for me, and this is NOTHING. But it's still scary and I found myself crying on the phone to a couple of people yesterday. So please pray for me to continue to be strong and brave over the next few weeks. A lot of people suffer far more than I am, but I'm scared of what's to come, since the timing of this coincides with so much important stuff at church.

My best friend Stacie talked me into trying to delegate whatever I could these next couple of weeks, so Sunday morning I didn't play for the choir Mass, since we had a 2-hour liturgy committee meeting from 2-4 p.m. Instead of playing 10:30 and 12:30 and then leading the meeting, I only did 12:30 Mass and the meeting. It's the only work weekend since July 2003 (since I've been a choir director) that I have only played for one Mass between Saturday and Sunday. We have two Confirmation Masses next Saturday (10 a.m. and 2 p.m.) and I doubt seriously I'll be able to sing at both Masses. If I'm lucky, I'll just be able to manage singing at the second of the two Masses, which is the one that has almost nobody singing, so I'm most needed at that one. I'm so grateful that my assistant, Bob, is playing for both of them. I don't see how I'd be able to hold up for a total of almost 6 hours straight without a nap or being able to lay down with my leg elevated for at least an hour in between. Stacie also talked me into coming over Saturday night to watch the LSU-Florida game, so Bill and I went over there for the first time in ages, and that was really good for me to get out of the house and socialize with people (even though LSU got slaughtered 51-21.) (I had also gone over alone to Stacie's Friday a week ago, which was the first time we had seen each other in weeks. We were both in a funk, and it was nice to hang out and catch up.)

Thanks for your prayers and support as I go into my final stretch. The countdown is in progress; 6 more treatments to go, ending on Monday, Oct. 20. Bill took the picture of the rainbow on October 8. Funny, one of the petitions I wrote at church last weekend asked that God would bless us with rain to ease our drought and we got a long, drenching 3-day rain for the first time in ages. (The power of prayer from the people of the parishes I've worked at is astounding! I think the prayer chains at St. James and St. Monica's have a hotline to heaven.) The rainbow was around sunset and the green of the trees and grass in the back yard was unusually brilliant. I told Bill there had to be a rainbow, since it was steadily raining but the sun was shining and the light looked so unusual in the backyard, so I went and got the camera. Sure enough, there it was, over the next-door neighbor's house, reminding me of God's love right here in my backyard, and that He's always there with us even when the going gets rough. I was literally seeing the light at the end of this radiation/cancer tunnel. (God is good!)

Love in Jesus and Mary,