So I got a couple day reprieve from the infusion and they took out my PIC line yesterday. If the nurse heard my “Moooo” quote, she didn’t think it was funny enough to acknowledge, but I laughed for her.
It’s turning out that the secondary wound on my back is getting up there in size. In fact it’s bigger than the first one when it was just opened. The Nurse Practicioner, Julie, is worried enough about it she said yesterday was my last infusion and that I wouldn’t begin getting the shots till the 20th or so to give the wound a chance to heal. I’m glad for the break, but really don’t want to extend the ordeal any.
We also found out that to give myself the shots at home is going to cost me $1300 out of pocket just for the medicine before the insurance picks up the whole tab. On the other hand, if I go in to the hospital every day and have a nurse give me the shot I won’t have to pay anything… sort of. The insurance says I need to pay a $20 co pay for going in to get the shots, Julie told them they don’t even bill me for the nurse visit if I go in, so why should the insurance get a co-pay if there is no billing. Seems sensible to me. And to boil it down, why should I have to pay more for the exact same thing at all? This is only the cost of the medicine we’re talking about, having someone else administer it, maybe I could see an extra charge. But paying over a thousand dollars just for the ability to take it home and give it to myself at a reasonable hour?
I think the health care profession has some sort of silly bylaw that says they need to continually make you feel surprised at stupidity.
I’ve got to remember that when they pull out my PIC line I need to say, “The cow goes…. Mooooo!”
So I made a big post last weekend about how infusion was going (rough) and how I’d met some people (nice) and some of them had been kind enough (Mitch and Christine Eyre) to take some pictures of me so I can document the infusion. But because of the state of mind from the infusion (mushy) I forgot to save it and don’t quite have the heart to recreate it. But I do wan’t to post the pictures.
Mitch Eyre and me enjoying our chemical morning.
I got my first Interferon infusion today. They put the PIC line in about nine o’clock this morning. They put it in my right arm midway up my bicep and it runs somewhere into my chestal regions. They told me that it had a chance of going up into my head, and they didn’t want that, so they had me tip my chin down to my right shoulder to help it get to the right place. They injected some saline and said to see if I could feel where it was. Instantly my ear felt like it was full of a rushing noise and there was this weird vibration in my neck. I went “Wahhhh!” in my best Monty Python voice and they stopped and pulled it partway out and tried again. The second time was the charm, I guess because they went ahead with the infusion after an x-ray showed them I was all set. It was all fairly downhill from then and, except for the pain from the PIC insertion point I felt pretty good, but tired. We came home and I had the home health nurse coming to check my vac-less wound. They removed the vac on the day after Christmas. I meant to write about it, along with so many other things, but never seem to find the time. I did manage to find the time to install the free preview client of World of Warcraft Saturday night, but that’s another sad story in itself.
Anyway, after the nurse saw me I was pretty punked out (which was what they told me to expect, so I took a little nap and woke up with chills and aches. I had a 100.5 fever, exactly the temperature they told me to expect, so I took some more Tylenol and Indomethacin (which totally works like a wonder) and went back to feeling pretty good. Anyway, one down four more weeks (less one day) to go.
Picture warning — don’t click on the link if you have a weak stomach.
So I got the vacuum changed Yesterday afternoon. The home healthcare nurse says it’s healing pretty quick, and if the tongue-textured section in that pic is any indication, maybe the doctor was right and I’ll be better (and ready for chemo) by Christmas. Yay. I hurt really bad today, though, and had a really hard time sleeping. I’d been off the pain pills (mostly) since before Halloween, but they’re making a reappearance in this second act.
So, this is a graphic post, don’t click the pictures if you’re weak of stomach. About five weeks after my surgery I got a lamprey device to accelerate my healing. Supposedly it’s going to speed up my recuperation time by 75%. On Halloween the surgeon saw that I was retaining a lot of fluid up near my neck and it was getting a little infected, so he opened me up a bit and drained the fluid out and packed it with gauze. He asked Debbie if she thought she could repack it every day. She’d gagged audibly at the process and said she couldn’t, but she loves me so much she managed to do it almost every day since then. She’s pretty happy now that I have the vacuum and she’s done with playing Nurse Debbie. About the time I left for Reno the wound had opened up a little and looked like this. The pictures really don’t give a good idea of depth.
While I was at the conference, Brian helped pack it every other day, and he told me it seemed to be opening more. After getting back from Supercomputing Debbie was a little alarmed that several of the staples were hanging loose and it had opened even wider. Each time I went in to see the doctor and said that Debbie was nervous about the ever widening hole he told me she was doing a really nice job of packing it and it was healing up really well. The last time he recommended the wound-vac and it’s been sucking on my back for a couple days now.
I just tell people I’m a kool-aid machine.
So yesterday we got to go visit the surgeon and get the results back. They were happy with the way the incisions are healing and I’m showing good progress. The bad news came when they said that there were some melanoma cells found within one of the two lymph nodes that were taken. The good news was that there were very few cells taken, not even enough to say that it wasn’t just my immune system removing the cells from action. In a way I feel that this is the best news from a health and worry perspective. Had he said they found nothing and they would consider me done I can imagine myself becoming more worried at every twinge and perceived oddity for years to come. This way I’m getting some further treatment as a security measure.
Monday I have to go in and have a brain MRI and a complete VT scan of the rest of my system to make sure there aren’t more tumors present. The surgeon said that he didn’t expect that with as few cells as they found in the lymph node, he didn’t expect to find anything in the rest of the scans. I suppose there could be coincidental findings, but I’m not worried about that. So, should everything go well with the scans after I get back from exciting Reno, Nevada I get to start a nearly year-long course of Interferon treatments.
I really had a good feeling that everything was going to be all right, and I hadn’t realized that it was really ‘bad news’ until the Doctor referred it to that. But he said that with the very low amount of spread into the lymph node my chances were still as good as if they hadn’t found anything at all.
I’d never meant this blog to be more than just the lighter side of stuff that crossed my mind, and who knows why things seem to go as they do, but I guess I felt like I ought to be writing more lately. Then things happen.
So I got a little surprise the other day. A mole I had partially removed and biopsied a couple years ago got some attention again, only this time it was diagnosed with melanoma. It kind of threw my week for a loop. I found out on Monday, saw a surgeon Wednsday and had it removed Friday. I’m just starting to be up and around more, mostly due to the effects of the pain pills and anesthesia than the problem itself. I had two lymph nodes removed from under my right arm as well as a larger area than the mole removed from my back. The scar on my back is quite large, due to the width of the initial area removed. They needed to take a big football shape to be able to close it straight. I feel a bit like I’m in a suit that is two sizes too small with a cat shoved in the sleeve. I should get the results back from the surgery on Wednesday, and I’ve been told the odds aren’t too bad that this is the whole of what I’ll have to go through. But the possibility exists that I do have more to go, I just need to wait and see.
It’s been quite the month for pain. I smashed (and maybe broke) a toe, and flayed the one next to it a few weeks ago getting out of Debbie’s car at the studio. The week after I smashed my finger with a sledge hammer pretty good and the fingernail is just fixin’ to come off now. The week after that I was breaking down the branches of a fallen tree and clocked myself in the nose with a good 4″ diameter chunk. I’m hoping this little streak is winding down, to tell the truth.
At least I have a lot of support around the house. Even Boo wants in on helping me out in my time of need.