Today, I woke up just praying that the TOMO machine that does my radiation would be broken. That happened once in the past, but today it would would have saved me a lot of pain. You see, my lips have become horribly disfigured over the last few days, and the sores in my mouth are also painful. My lips are swollen and encrusted in scabs and are very painful. I reached a low last night when they started to bleed pretty hard. I just put a wet towel there, but it was painful because the towel got stuck to the lips.
I met with my medical oncologist yesterday and he said the reason I looked so bad was from the 5-FU. I should actually back up a month or two to when the medical oncologist called me at home and said he was considering adding 5-FU to my treatment but he wanted me to know that the side effects would be very bad, which he reiterated a few times. I of course was willing to take anything they threw at me because I wanted to be as aggressive as possible, regardless of the pain. Then, the medical oncologist asked to speak to my dad to tell him of the drug and get him on board, reiterating how tough it would be.
Well, according to the medical oncologist, the 5-FU drastically increases the power of the radiation, and that caused the radiation to rip apart my mouth and lips.
On Monday I talked with the radiation oncologist, and we agreed to lower the amount of radiation going to the lips. Yesterday, we did treatment as usual, and today I was laying down on the TOMO machine, ready to go, when one of the radiation techs said wait a minute, "I am going to go page Dr. ____." The doctor came in and said we would postpone treatment today and thanked the girls for alarming him of my worsening lip situation.
The radiation oncologist basically said they modified my plan, but that there was very little radiation going there to begin with, and that it must be the chemo causing the sores. He also said we would have to take time off because there is a certain threshold of what your body can take and that I was there. I was worried because the day before the medical oncologist warned that taking breaks of six or seven days was bad. In general, I have heard that you want to complete your radiation with no breaks. So, I brought this up to the doctor and he said anything over five days is considered a break, but that we wouldn't go that long. This made me feel better. It also made me feel better when he said there is such a thing as being too aggressive. I think we have been very aggressive, but still want to push on as best we can.
I have a very rigorous plan of how to repair the lips. It basically involves about a 30 minute routine to be done every hour or two on the lips. It's designed to give moisture to the lips, which is ultimately how they'll heel. So, I am going to be fastidious about this, and also make sure to get all my calories, so my body can use them to heal.
I have mixed feelings about all this, but am still confident everything will be fine, and it will be nice to have healed lips.
I am still debating the "state of the economy post" as it seems like a lot of work, but I think a short posting should be coming soon. Also, look for a new post about what I plan on eating after this is over. I think this should be of particular interest to my cousin Ellen in Thailand who must already have a list of the American food she is going to eat when she gets back. Also, Ellen, were you referring to Los Compadres on 7th Avenue?
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14 comments:
Steve:
If you need some extra chapstick, I bet the school nurse has four or five tubes in her desk.
Kip
Steve,
It was so great being down with you, Tom, and Jen yesterday. I could see how much pain you were in and I hope my ptolemics during the returns didn't add to them. In the words of Big Ern, though, "I'm sorry. I couldn't help myself."
As I was reading your latest entry, I was reminded of one of the runs we did in Oregon where you said (which was in relation to running but has become my credo) "If I'm going to err, it's going to be on the side of over-exertion." Though that doesn't hold true in all aspects of life, I think it may when it comes to your treatment. The only clinical advice I feel comfortable offering is that if the doctors tell you to ease up, don't feel guilty or worry about doing so. You did look like you went a few rounds with Muhammed Ali last night. I hope that pain has subsided. I look forward to your state of the economy entry and to rebutting every Reaganesque aspect of it. I love you so much, dude.
A trait I have always admired in your dad is his almost overboard approach to training. If two miles is good, he would do four. Climbing South Mountain is difficult, so he would do it a couple of times, at race pace. It was a trait that skipped me but obviously was passed on to you. I agree that there is a "too agressive" approach. And I am sure you know as well as anyone that you can only push your body so hard. I wouldn't look at this as a setback but merely the Jim approach. A couple day break may help your body fight this off. Remember, I still completed a couple of marathons both in personal best times. So what if neither broke four hours. In the end your cancer is going to be gone, period end of story. So if a couple of days off help you maintain your sanity, there is no harm.
One more thing, I think maybe your reluctance to post your economic treatise is your fear of Teddy coming through the computer screen after you. We will ask Mary & Greg to put him in restraints while reading it.
In this week's Newsweek there is an article by George Will that explains the insanity of putting food in gas tanks. At the risk of putting my liberalism on the line, I think he makes a good argument for opening up the Artic Reserve.
What it comes down to is that feeding the world matters more than a piece of frozen tundra no one ever sees. And the options are basically just that.
Contrary to what Ted will think when he reads this, I have not gone over to the dark side.
I was just on iTunes and was sampling the new Sheryl Crow. Although she is one of Elz's and Liz's favorites, I have never been that impressed. But she has a song on her new album called "Make it go Away (the radiation song)"
Probably the most appropriate yet.
pHey Steven,
First, YES Los Compadres it is...on 7th Ave!!! Oh it will be good my friend, it will be good.
Second, I think if you can figure out a way to patent the lip mositurizing formula, you could probably make some big bucks :)
Third, dad, I too have been unimpressed with Sheryl Crow as of late, but I have not heard her new stuff, so maybe it is appropriate.
So, I think your Dr.'s are following an old Thai theory "Put off till tomorrow what does not need to be done today." Let yourself gather strength for the last miles. I promise to not include something about life in Thailand in all posts....but so much has been learned. So much. As I am sure you will say when all this is over. Lessons come in all shapes and sizes I guess.
In reference to the title of this blog, my song for today (the week really) is "Hold On" by the Wilson Philips...another great band lost in the years!
Till the state of the economy post, Much love.
You always raced well after forced rest.
Hi Baby,
I am so sorry about your lips and mouth. I remember when I would take Poppie for his radiation, he would only be in there for five minutes, and wasn't receiving anything else, his mouth was full of sores, and his lips were burned. He always told me that his mouth, other than the pain, felt like a big cotton ball. So this time, I can almost imagine what you are going through,
I'm glad your watching your calories, and althought using Peg is a humbling experience, it sure is a way of keeping your strength.
I look forward to any of your post and think and pray for you constantly. Moochie goes to Mass for you every day. Your have a lot of support and love backing you, and I hope that a short rest will add to your strength.
As everyone else has already said, let's all look forward to the beach. As far as the OTL tournament, I think Wacky and Ted are already practicing...that could just be a rumor..!!???
Have a good rest, eat lots, eventhough you made need Peggy's help, and remember, I'll love your for always.
"I will pick the roses. The sharper the thorns, the sweeter shall be my song."---M.T.
Aunt Lynnie
Steve:
It sounds as if you are on mile 20 of a marathon and you've hit the wall. I remember how THAT felt.. as if there was nothing left. However,I agree with your Uncle Jim that the time has come to rest. You are in this for the long haul! I cried when I read your blog this morning, just remembering how the chemo affected my father during his leukemia treatments. He had these side effects, those sores. It was disgusting and terrifying and we wondered if he could or would stick it out. He did and he is in remission. The doctors had to tailor the chemo to his particular response. THe stuff is POISON, Steve. It does TERRIBLE things to your body and your soul. It is nothing like running a marathon. After watching my father struggle, I don't think anything is worse than fighting cancer. The only thing I can tell you is that my dad beat it. He is OLD but he had the kind of support that you do. It counts for so much. You are young and tenacious, Steve. Take a little break. Catch your breath. Get some hugs and some shut-eye. We will hold you up in our thoughts and prayers until you are ready to hit it hard again.
Steven,what a trial you are going through! Since Aunt Elaine has already paralled your suffering to Lent - it was like waiting for someone to throw the Queen of Spades out in Hearts for me since I don't know if you are open to hearing this, but it sure made the little sacrifices of Lent we try to commit to seem so minimal. Unfortunately, there is no Simon to help you carry this cross, but your dad and Jen are by your side like Mary and St. John. It makes me feel better to think that way and offer it up for some greater good. My quote from St. Therese I keep telling myself is, "Everything is not for the worse. Everything is for the better." Some days that is all that keeps me going T. I love you so...Mudgie (a kiss to your shoulders)
Jim’s message above reminded me of a song that Melissa Ethridge wrote after fighting her cancer: I Run for Life. How fitting? I remember seeing her perform it a while ago on Oprah. It was moving to say the least. Like your Aunt Mary, I have found you and your blog entries incredibly inspiring to get my butt off the couch and enjoy all of the trails Phoenix has to offer. I’m putting this song on my own iPod to enjoy during my runs. I know it will make me think of you, appreciate what I have and hopefully, encourage me to run a bit faster! We think of you constantly. There are candles lit in your name in churches all over Phoenix! Looking forward to the state of the economy!
Hey Steven,
When Poppie's lips got bad, his radiation oncologist gave him Aquaphor. The tube says for dry, cracked and irrated skin. Maybe your doctor has something for it. At least if you smeared a heavy coat of this you could but a cloth on your lips without sticking.
just a thought.
Maw Maw
O.k. Danny, what does KIP mean?
Steven you forgot Sara's in San Diego.
Praying you can get your lips feeling better and get back to your treatment as I know you want this all to be over...
Praise God for Nurses that care about their patients.
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