It's been 10 years since I was diagnosed with Head and Neck Squamous Cell Carcinoma... cancer. I started this blog to share the many emotions, fears, experiences and, hopefully, triumphs that I will face throughout this journey. I have two goals for this blog, 1. To gain some degree of personal therapeutic benefit and, 2. To help others who may one day face a similar struggle by detailing the process of diagnosis, treatment and recovery so that they may know what to expect.

Sunday, September 03, 2006

Help Wanted: TomoTherapy Repairman

September 3, 2006 - Sorry for the delayed posting. Thanks to Tropical Storm Ernesto, we haven't had Internet connectivity all weekend. As it is, I'm "borrowing" connectivity from someone in my neighborhood who was kind enough to leave his wireless access unsecured.

So this may sound hard to believe (it was for me anyway) but the $5 million state-of-the-art TomoTherapy Machine is on the fritz! Yes, you read that correctly. It had been getting progressively more tempermental by starting then stopping, having to be reset, communication errors, etc., until finally, on Wednesday, it stopped working altogether. I waited an hour in the reception area only to be told that I would not be receiving treatment that day. This is problematic on multiple levels. One, what would missing a day of treatment do to my overall progress, especially since I'll be missing this coming Monday as well for Labor Day? Two, how disconcerting is it to think that the giant microwave that I have to lay in every day may not be working correctly? As for the first issue, Dr. Tonnessen assured my that one day is no big deal but if it were to become three or four days we'd have to come up with a new plan and he admitted that he didn't know what that plan would entail. Regarding the second issue, it was explained to me that TomoTherapy has a staff engineer and a staff physicist on site at all times so they will get it fixed and there is no reason to be concerned about problems occuring while treatments are being administered. To their credit, the machine was working just fine the following day.

Dr. Tonnessen examined me again on Tuesday and this time said that he can no longer feel any tumor. I took this opportunity to ask the question I should have asked last week which was whether or not this degree of progress is to be expected at this point in the treatments. He told me that it is very encouraging and to be this far along after fewer than 1/3 of my treatments puts me "well ahead of the curve." Encouraging indeed!

My encouragement was dampened this week by a call from Dr. Dar's office. Each week, prior to the Erbitux injection, they take blood to measure blood counts and liver function. Last week they called to tell me that my liver functions were slightly elevated and while not a cause for immediate alarm, it is something they would be monitoring. This week they called again to tell me that my liver functions were significantly more elevated. No one wants to speculate as to what this means so, naturally, my first thought is that that the cancer has spread to my liver. I mentioned this to Dr. Tonnessen on Friday and he told me that's impossible. He said it's most likely due to the Erbitux and worst case scenario, we might have to switch to Cisplatin. However, Dr. Dar insists that it is not the Erbitux because, according to him, Erbitux is not metabolized by the liver and there is no case history of liver complications with Erbitux. Instead, he wants to rule out some sort of biliary duct blockage so he has ordered a sonogram which I will have Tuesday morning. I'm concerned. Very concerned. I think I've gotten over my initial fear of liver cancer but something just doesn't add up with all of this. Before I started the Erbitux treatments, my liver functions were just fine. In fact, they tested me a week before starting treatments and they tested me just prior to the first treatment as they do prior to every treatment. It wasn't until after that first dose was administered that my counts started going up. I guess we'll see what the sonogram tell us but I think they're looking for gall stones. If I do, in fact, have gall stones, they will have to be surgically removed.

Now onto my favorite... the weekly bitch session. I now have a collection of ulcers along the left side of my tongue that burn whenever I put something in my mouth. The thought of eating anything anymore has become totally reprehensible to me. Everything tastes the same and that taste is terrible. I can't really describe the taste but I imagine it's something like dirt or burnt tree bark. My throat still feels OK, so thank God for small miracles, right? I've stopped getting on the scale but I know I'm losing weight and am not looking forward to the stern lecture that I will receive this week from Tonnessen's nurse.

As for the rash, it's as bad as ever. I broke down and finally started taking the Doxycycline that Dar prescribed. I guess it's helping a little but it's probably tantamount to using a garden hose to fight a forest fire. The itch is incessant and I've used every topical cream I can think of on my scalp to try to find some relief. Most anti-itch creams last for a couple of hours but I'm still waking up most nights because of it.

Thank GOD college football has started. At least my Terps pulled out a relatively easy, if uninspired win yesterday. Sorry for not posting, Noli, but if you saw me right now, you'd understand why tailgating is out of the question.

8 Comments:

Blogger FamnBlan said...

Hang in there Mike....even the big space station things flying around in outer space break down now and then. Think of it as needing an oil change.!!
Focus on college Football....hey did my Wildcats beat BYU??
Good news that the tumor is not being felt. Drink some protein shakes through a straw, maybe that will help.
Thanks for keeping us posted and keep bitchin' if it helps :)
Traci

1:02 PM

 
Blogger Fox Cular said...

Hey bud, keep your strength and appetite up. It definetly sounds like the treatment is working, unfrotunatley it takes a toll on the body as it kills the c-cells. Let me know if I can bring by some Cluck-U, cheesesteaks, Giovanni's, dippin dots or Robeks... Whatever you think sounds good or would taste good. My mom enjoyed Wendy's frostys during her treatment due to the cold and the Wendy's old fashion chocolate taste. Make sure to ask your Dr. to prescribe some "Magic Mouthwash" it will take away the pain and bad taste in your mouth...

9:38 AM

 
Anonymous Kate Garsson said...

Hey Mike,

I just wanted to let you know that you have been in my thoughts and prayers since the very beginning. You have such a positive attitude and I have no doubt that you will beat this. Hang in there!

-Kate

1:34 PM

 
Anonymous Grace Cular Yee said...

Hey Mike:
Alex forwarded your blog to us. You are so courageous and you're going to win this battle. I hope you find strenght & comfort knowing that you don't have to go through this fight alone - there are so many people who love you, Michelle and Mason. You're in our thoughts & prayers. You're going to beat this enemy.
Love, Grace & Roger

8:54 PM

 
Blogger Brian said...

Hey Mike,

Just wanted to drop you a line and let you know I'm thinking about you. When you find yourself stressing about the TomoTherapy machine remember this...a DOCTOR can't feel anything where the tumor was, that is a damn good sign in my opinion. Stay strong...go terps, i have to say that queitly around this house as angie is "tribe" alum. stay strong brutha, you're in my thoughts and prayers.

Mistretta

11:22 PM

 
Blogger Brian said...

Mike,

(I must confess this is my second post so if its slightly duplicate, my computer froze when i tried to publish my last one.)

Just wanted to tell you that i'm following along on the blog. Don't sweat the TomoTherapy machine breaking down, focus on the good stuff. A DOCTOR says he can't feel ANYTHING where a tumor WAS. That is damn good my man. Stay strong and know that i'm thinking about you.

By the way...I'll go ahead and say 'go terps' for beating W&M, though i have to do that quietly around here as Angie is "tribe alum" pffft...WHATEVER...

You're in my thoughts and prayers...

Brian

11:26 PM

 
Anonymous Anonymous said...

Hi Mike,

I work with your wife Michelle and met you at a Capital Cabal event. I was reading your most recent posting and just wanted you to know that you're showing incredible courage. You and your family are in my prayers!

Tonya

2:58 PM

 
Anonymous Anonymous said...

Hey there Mike,
We just got word from Alex...we are very sorry to hear the news! After reading through your entire blog, it sounds like you are fighting this disease head-on, and doing a DAMN good job at it!!! You are a strong man!

Keep it up! Keep your head high! You have a wonderful family who loves you dearly, and a ton of friends who do as well. We are here for you, man!

It's been awhile since we've seen you, probably since our wedding in 2003. We look forward to getting together one day real soon when we are back in DC visiting, and we look forward to throwing back a few beers with you and knowing that this cancer is behind you!

Look for something in the mail very soon...we hope you like it!!

Our thoughts, prayers, and love are with you and your family during this difficult time! Keep your strength up, stay positive, and you will beat this bugger into the ground!

Love, Michael, Amy and Katelyn

5:00 PM

 

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