10 Weeks Post Treatment

December 15, 2007 - Not really too much to report this week. We've been busy focusing on the holidays, running to and fro.

I did meet with Tonnessen on Monday and that went well. He felt the nodule on the back of my tongue and said that to him it still felt unremarkable, even more so than the last time he felt it. I reached down there too and it still feels like a pea to me. Whatever. I'm going to rely on the PET scan and assume it's nothing at this point. No point in dwelling on it.

On Wednesday I went to a local SPOHNC chapter meeting, my first one. SPOHNC stands or Support for People with Oral Head and Neck Cancer and their website can be found HERE. It's a nice group and there are no mandatory dues although the newsletter costs about $25 per year and they will certainly ask for (and deserve) donations to the cause. The meetings usually have a guest speaker on a topic of interest to people who have undergone treatment for this particular type of cancer. There were about 10 people at this particular meeting and it was very interesting to hear everyones story. One of them, Roger I believe is his name, is a 7 year survivor and it struck me that he is the first person that I've actually met or spoken to who has survived more than 5 years. I know these people exist in the abstract but to meet one in person was nice. The other thing that struck me about the meeting is how fortunate I am that I seem to have tolerated the treatments much better than most. They were all very surprised when I told them that I was only 10 weeks out from the end of my treatments because of how I looked, spoke, etc... Many of these people had a very hard time and have very visible lasting effects even two and three years later. For the most part, I feel almost completely back to normal already.

Taste is still coming back seemingly in chunks. It will stay consistent for several days and even regress a little once in a while but then I'll wake up and it is noticeably better. I can actually enjoy certain foods again.

That's all for now.

9 Weeks Post Treatment - Follow Up PET Scan

December 6, 2006 - Today is officially nine weeks since the end of my treatments. It is also the day of my first follow up PET scan. Normally, I'd have to wait another three weeks or so for this follow up but Dr. Tonnessen ordered it earlier than he normally would because of the "nubbin" that can still be felt on the base of my tongue. I've been reaching down there periodically to feel for it and yep, it's still there. It's at what I understand to be the site of the primary tumor and feels to be about the size of a pea. OK, maybe a smallish pea. Anyway, as I've already reported, Drs. Tonnessen and Califano, while not particularly concerned about it yet, have taken enough of an interest in this thing to term it "something to keep an eye on" and, thus, the early PET scan. I wouldn't be worried about myself if it weren't for the fact that both of them stated during the course of my treatment that this thing had disappeared. If it's just left over scar tissue, no problem. But to think that it went away and is now back suggests that it's something more than just scar tissue.

Anyway, the PET scan today was just was I remembered it. And so was my anxiety level. I guess the anxiety leading up to the PET scans never goes away. I'm obviously worried about this "something to keep an eye on." I'm also concerned about some pains that I've been having the past several days. Starting on my upper back and chest and radiating down both arms, my skin is painful to the touch. Almost like I'm sunburned. If it weren't for the fact that I feel this on both sides of both arms, I'd chalk it up to late effects from the radiation. But this is just weird. My clothes literally hurt. It's not excruciating but it is uncomfortable. What's more, it seems to be more focused in certain spots and those spots seem to move around. I don't know how else to describe this and I know it sounds crazy. My shoulders have also been very tight and sore and my throat has been bothering me lately. These things may just be the result of stress and they may be totally unrelated to each other. Who knows? I just know that it's a little discouraging to think that I've made it through two month with relatively little to no pain and now this?

I was told that the results would be ready in 48 hours and sent to Dr. Tonnessen whom I am already scheduled to meet with on Monday. Imagine my surprise when I received the following voicemail just a few hours later (recounted here verbatim):

"Hi, it's Dr. Tonnessen from Radiation Therapy. Ummm, I left a message just now for Mike. It's about 4:15 on Wednesday. Ummm, PET scan was terrific. Ummm, quote 'favorable response to therapy... resolution of previously noted abnormalities in the left neck and base of left tongue... no evidence of spread elsewhere... blah, blah, blah.' Ummm, just what we hoped! Hang in there. bye-bye."

I can't begin to describe how I feel about this so I won't bother trying right now. I will say that I am eternally grateful to Dr. Tonnessen for calling me and leaving me that message as soon as he got the results. He knows that I would have agonized over this all weekend. I told Michelle to listen to the message without telling her what it said. She cried as she listened.

On another positive note, big improvements in taste over the past week. I'd estimate it to be anywhere from 50-70% back to normal, depending on the food. Things are still dry but nothing alot of water can't take care of. More to come...