There were other emails of a much more personal nature that I’ve decided to skip but the crux of the situation is that for Sarcoma the clinical results and metrics show your chances of recurrence diminish greatly if you have radiation therapy first before having the surgery to cut out the tumor or suspicious mass. What was causing my doctors down at the Duke Sarcoma Center concern was the scar tissue from the hernia surgery. They couldn’t determine without cutting me open whether it was just a hematoma (black and blue mark) scar tissue or a tumor the hernia surgeon left behind. I assured them the Hernia surgeon wouldn’t leave one tumor behind while taking another. And in an example of patient advocacy insisted that the specialist at Duke talk to the Hernia surgeon in Florida (they did) because he was boots on the ground. Once they talked to each other the Duke specialist dialed down their alarm and basically said we don’t know what it is but we are cutting it out of you and I now have the scar to prove it!
Journal Entry Two:
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Hello all,
Just a quick email update we are approaching the end of radiation treatment. I am not going to miss getting zapped every day as I am now slightly sun burned in a very sensitive area….yowie zowie! The final treatment is scheduled for Tuesday the 11th. One of the weird peculiar to me side affects is I come out of radiation just ready for chow. I had to have a couple of cops and a homeless guy push me out of a snow bank as I barreled into my local Wawa for a classic turkey hoagie extra provolone oil and mayo and bring on the Fritos and chocolate milk. Think Animal House and Flounders car crashing into the front yard. Actually I could use a hoagie right now and yes its 10:45 am. That’s how a true Philadelphian combats calamity – take two hoagies and call me in the morning.
We are now waiting to hear from Duke about logistics. There is another round of CT Scans and MRI and then surgery. We are looking forward to getting this behind us and having a great summer! Amy thank you for the gifts in the mail we used that money on a night out and of course the scenic calendar is beautiful. Jay it was great talking to you as usual and I’m expecting those old Kingston Road garage photos or at least one of them in the mail – so start digging brother and I hope they are in the original frames as well. That will help keep the home fires burning.
As you all know I’m not the only one dealing with this screwed up industrial assault on our bodies there are others in our own families and extended families so keep everyone in your heart. And just so you know some of us don’t like playing the victim or treated like victims so keep a stiff upper lip and go into the corners hard elbows up.
One final word that cancer ad during the super bowl was targeted at those without cancer because those of us dealing with it don’t want that weak, wimpy victim attitude directed at us. I was horrified at that add. One big middle finger to cancer is the attitude you need to beat it – at least that’s the approach I’m taking. Feeling sorry for yourself isn’t going to get it done (with anything). So don’t bother worrying or feeling sorry or milking the drama its counter productive and just flat out annoying to deal with – treat those in your life with cancer the same as before. I’ve heard this from all types of people with disabilities and disease. So when you think of me laugh hard know I’m still enjoying life from dawn to dusk and back again in all its subtle wonder both seen and unseen as I always have and get tough and have a hoagie!
Chow hard and keep the faith!
Paul
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