Grim Determination

Boot Camp. Your Ph. D. thesis. A marathon. Near the end of all these things, a grim determination sets in with the individual involved. There may be hints of sarcastic or gallows humor, but the more common symptoms are a clenched jaw, very few words, and a stare that says "do not get between me and this thing I'm trying to finish."

That's sort of where I am with cancer treatment. I put on a good show for my family and anyone who calls, but in reality I'm just managing the endgame. My final radiation treatment is Monday the 29th, but I will actually continue to feel worse every day for 7-10 days after that.

The subsequent recovery is then slow but consistent. The big goal is getting back to solid food. It turns out that your throat muscles don't have a good memory, and some people have trouble learning to swallow again. Of course it doesn't help that my taste buds are temporarily shot and there is literally nothing that tastes good right now. It is very strange to have no appetite and to have to force myself to eat. Oh, and did I mention the nausea?

Enough of my bitching. How's your day? Send me an email with something amusing, dammit.

Actually I've been very amused by some of the efforts to make me a CD. It appears that many of my friends are not acquainted with the applicable technologies. Back in the day, everyone (?) knew how to get an album on to a cassette tape, and the more advanced players would spend hours creating the ultimate mix tapes. Now it seems like people somehow get their music on to their computer and their iPod, but God help them if they need it to go anywhere else. One good friend just gave up and sent me a mix CD that her cool niece had made for her. Another friend got a hard lesson on the fact that not all computers that can read a CD can burn a CD. Some of my other friends are turning to teenage children for help. In any case, all the effort is appreciated. Special mention goes to my friends John and Katie, who shipped six CDs all the way from Germany, complete with photo covers from my 30th birthday and our wedding.

Thanks again for all the cards, emails, calls, and prayers. They really make a difference.

I'm sorry I haven't been very responsive - I owe a lot of people return emails. I promise I'll catch up soon.

Michael

Radiation is my new best friend

I’ve finished Phase I of my treatment, which was nine weeks of industrial strength chemotherapy. I just started Phase II, which consists of seven weeks of M-F radiation + once per week “light” chemo. The chemo this time is designed specifically to help the radiation work better – it makes the cancer cells more responsive to the radiation.

The radiation is just like getting an X-ray – each daily session only takes about 15 minutes. Unlike a normal X-ray, your head and shoulders are locked down with a custom mask that feels like a giant hand over your face, pressing your head into the table.

Over time, the cumulative dose builds up and causes severe damage to the cancer – essentially a controlled radiation burn. As this process goes on, things become quite uncomfortable (think of a 3rd degree burn on the inside of your throat). When they finish, it takes about four weeks minimum to recover. So I’ll be taking 8 weeks off work, starting around September 1st. The end of September will be the low point. October is recovery, so if things go well, I'll be somewhat back in the saddle in November.

As promised, here are some photos to amuse you. First we have my kids getting ready to cut my hair. Yes, it was already falling out at this point!


Next, we have the results of their handiwork - what was eventually determined to be a "oompa-loompa mohawk."


My kids think my head is a canvas. They suggested I carry around a marker so people can sign my head as if it were a cast....


And to hide my total baldness, courtesy of a gift from our fun friends, the Sawyers, we have the "instant hair" photo.


Thanks again for all the kind thoughts and prayers, as well as gifts, emails, tunes, and cards.

Michael

What Can You Do?

The most common thing friends say when they find out I have cancer is "just let me know what I can do - really. Anything you need." And people mean it, too. I've had offers for child care from friends as far away as CA. This "what can I do" sentiment is extremely generous, and much appreciated.

Of course you don't have to do anything - your thoughts and prayers are what count. But I did think of something that you can do: burn me a CD of your favorite tunes. I'm going to have plenty of down time at the end of my radiation treatments, and I think it would be very interesting to see what everyone is listening to these days. Surprise me. I'll make a compilation MP3 DVD at the end and send it back to everyone that contributes.

(If you live around Boston, you can join the "cook a meal" program at http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=7a234353-
b21d-4075-a00c-c2acf6a14914.)

Half Way Through Induction Update...

Just had a progress check yesterday (7/18) with my doctors. They compared a CT scan from before I started treatment to a new CT I did on Thursday (7/17). Both the tonsil and lymph node tumors have shrunk by 50% or more, which is what they want to see at this stage. What does this mean? It means we stay on the current plan (as described in my previous post). So this Tuesday I will have my last round of "induction" chemotherapy, and then three weeks later (8/11) will start radiation/chemotherapy for 7 weeks.

Psychologically, is great to see the reduction in tumor size. It feels pretty good to see clear signs of progress, and it is certainly a relief to think that this isn't spreading. But there is still a long way to go, and a lot of things that have to go right. I asked my doctor this week when would be the earliest we would know if we really beat this stuff. Turns out he likes to wait about three months after treatment ends before taking a final scan to see if anything is left. So that means the earliest I could get the "all clear" sign is around Jan 1. Hmmmm...... maybe time to start thinking about a New Year's Eve party?

Thanks again to everyone for the emails, cards, thoughts, meals, books, tunes, toasts, calls, and by all means, prayers. Keep them coming.

Three Words You Never Want To Hear

"You've got cancer."

Heard those on May 21st, 2008. Nice belated birthday present (from the day before, May 20). Here's what's up since then:

The cancer is in my left tonsil and lymph node on left side of neck. No idea what caused it, and it is pretty rare.

There are four things you hope for if you get cancer. 1. you find it early. 2. you get the kind that doesn't tend to spread. 3. you get the kind that is very responsive to available treatments. 4. you live near cutting-edge cancer treatment hospitals.

I have 2, 3, and 4 on my side, which is actually very good. One doctor told me "if you had to pick a cancer to get anywhere in your head or neck, you'd definitely pick tonsil cancer." Of course he put a very big "if" in that sentence... ;>

Here's the treatment plan. Phase I is three infusions of chemotherapy, three weeks apart. This means they pump me full of several deadly chemicals which target fast growing cells. Then they wait three weeks for me to recover, and then do it again. And then one more time. Phase II is radiation, five days a week, for 7 weeks, with a side order of chemo once a week. So we're talking about 16 weeks total for treatment, and something like 2-4 weeks of recovery at the end of Phase II.

I'm currently on day 8 of my second chemo cycle, and it is going pretty much like the first. That phrase "target fast growing cells" I used above means cancer cells, but it also means your entire food processing system (starting with your tongue, believe it or not) and then some. Overall, the side effects are not that bad. The most unexpected was bouts of uncontrollable hiccups (sounds funny, but not fun). The worst may be a completely screwed up sense of taste. The hair loss you will undoubtedly find amusing, and I'll post a photo of that one of these days.

Initial results are good - the cancer has shrunk in both my tonsil and neck. Still very early in the process, however, and a long road ahead. The side effects of radiation are much worse, but I'll save that for another post.

I'm still working, but am not traveling. Another side effect is a suppressed immune system, so those airborne virus labs called airplanes are not a good idea right now. Fortunately, my job has always required me to be able to work from literally anywhere, and right now anywhere = home office.

The outpouring of support has been tremendous. Thank you to everyone who has helped out, sent cards, cooked meals, called, emailed, etc. Everyone's thoughts and prayers are very much appreciated.

michaelfhayes@verizon.net