Very Good News

Here are six words that every cancer patient wants to see: "no evidence of local tumor recurrence." That's what the report I received today says, so it appears that the treatment worked and I am cancer-free. I have to admit that it feels pretty good to write that.

Great medicine + power of prayer + positive attitude + support of family and friends + luck of the Irish = success.

MANY THANKS AGAIN for all of the prayers and support. The doctors all agree that people do better with a strong support system, and I feel extremely lucky to have had so many people looking out for me. And here is where I publicly declare, in front of the entire world wide web, that I have the most amazing wife on the planet.

I'm really a bit overwhelmed. Even when you maintain a positive attitude and a sense of humor, the anxiety is down there, lurking. I first discovered the lump in my neck in January, so you can imagine the level of relief involved today.

I will go back for a scan in a month, and there is still a very small lump in my neck that they want to watch closely. So I'm not getting cocky, and frankly won't be for about five years. As you cancer gurus out there know, the chance of recurrence drops off sharply as each year goes by, and after about five years, the doctors start to really relax.

I'll leave you with some humor from today's report. They did a partial head, neck, and chest scan on Monday, so they scanned part of my lower brain. They didn't find anything, but you gotta love the way they wrote it up:

"Visualization of the inferior brain is unremarkable."

Ouch! ;>

In Limbo a Little Longer

Based on advice from my doctors yesterday, we pushed back my scan to 5 December. This is to reduce the odds of a false positive reading. "Positive," in this case, means "still see some cancer" so we want to avoid that...

They really don't expect to find anything in the tonsil area. Based on the initial size of the lump in my neck (lymph node), they expect to see "something" there. Based on their experience, which is vast, the something is usually just scar tissue, but the only way to be sure is to go in and cut it out. We'll see.

That's the latest!

No Whining Zone

I realize that it has been quite a while since my last update. The simple truth is, my recovery from treatment has not been much fun, and is taking a bit longer than we were hoping. This is why I haven't written - I just can't bring myself to believe that anyone wants to hear about the details, and if I gave them to you it would come across as a list of complaints. And just as O'Reilly has his "no spin zone," my blog is a "no whining zone." ;>

As I continue to recuperate from all the fun radiation and chemotherapy, I remain in limbo as to whether or not the treatment actually worked. I have some appointments on the 18th and 21st of November to find out the answer to that question. How'd ya like to have that hanging out there? Not a fun wait, but we have every reason to be positive.

According to my beautiful nurse (Anne), I am making reasonable progress on the recovery. I've graduated from pure liquids to all kinds of soups, including those with chunks of relatively soft things in them (fascinating to you, I'm sure). Legal Sea Food clam chowder is a favorite, which is good because I need the calories. Not exactly "heart healthy," however! Well, one thing at a time. And you should see Anne in her nurse uniform - striking.

Thanks again to everyone for all the emails, cards, prayers, holy water from Ephesus, cds, etc. If I haven't responded to your email yet, mea culpa and I'll get back to you soon.

Here's proof that my hair is growing back and that I'm back at my college weight. Nothin' beats radiation burns in your throat if you're lookin' to drop 35lbs in two months!

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.