“My Voice” by Mike Tufo

Mike Tufo - 'Survivor'

OUR STORY – BY “THE” MIKE TUFO  (SYNOVIAL SARCOMA)

I’d love nothing more than to claim this story as my own, however it doesn’t belong to just me.  This story includes my wife, Dianne and my children, who have been on this ride with me. It began in October 2007, while playing with my four toddler boys in the dining room. I banged my leg into the table and said,”Wow!, I’m gonna feel that in the morning”. And I did. Two weeks later, I was runnin’ up the steps of the Philadelphia Art Museum (ala “Rocky” style) with the boys, when I got this real bad cramp in my thigh. I limped down and told the wife, who suggested a visit to the doctor. The PCP wasn’t too concerned and diagnosed me with a hematoma which was appropriate given the history. We treated it for four months and then he suggested a Vascular Surgeon, thinking I nicked an arteriole or something. The VS agreed with the hematoma theory and had me get an MRI prior to surgery in March of 2008 to remove the “hematoma” which now had grown down to my knee. The MRI showed a “significant hematoma” with no mass (cancer). At my pre-surgical visit with the VS, he wasn’t convinced with the MRI and decided to do a biopsy “just to be sure”.

He called me at work a few days later with the results and told me I had a mass in my leg and he had already set me up with an Orthopedic Oncologist and Oncologist in Philly who were very experienced with Sarcomas.  At this point, I should tell you all that I’ve spent over 24 years in Medical Imaging in hospitals and offices as a CAT Scan Tech and Radiographer. The doctors’ words didn’t phase me at this time because…I NEVER HEARD OF LEG CANCER! That was on a Friday, the third week of March, 2008. The following Tuesday, I saw the Ortho Onco and then Thursday to Dr. Arthur Staddon (my Oncologist), who explained to me that Synovial Sarcoma was a rare aggressive cancer that needed to be treated aggressively in order to kill the primary tumor and any metastasis (which was found in my lungs as well). Friday I got my “Port” put in my chest, Saturday a CT to evaluate the metastasis, Monday my first chemo treatment of Adriamycin and Ifosfamide and I would have to have an IV Fluid Pump each night of chemo which was all week. And that whirlwind started OUR STORY.

It was the third night of chemo that I was laying in bed when it hit me. “I have cancer!”, I said to myself as the tears came and the throat swelled and the hyperventilation increased. I was suddenly “the deer in the headlights” as the visions of my wife and boys flashed before me. I was too young for this! I visioned my smiling picture hanging in a store window announcing “A Beef and Beer to benefit the family of Mike Tufo in his memory”. I hadn’t cried like that since I was four years old! I did so for about five minutes, then a “voice” went off in my head that said,”Ya’ gonna’ die or ya’ gonna’ live?…MAKE THE CHOICE NOW!”; and all my fears and anxieties disappeared and I said out loud,”I’m gonna live!” I decided then that I was going to laugh my way through this no matter how bad it got. What was the point of going through all this just to step off a curb and get hit by a bus because I was so worried about my cancer that I wasn’t concentrating on crossing the friggin’ street?! That’s also when I stopped looking up the statistics on the Internet, because I realized that statistics are just numbers that serve no other purpose than scare the hell out of the individual, and besides, cancer never met ME!  Don’t get me wrong…I still have my “moments” from time to time, but they only last a moment then they’re gone.

Here’s my treatment history: Adria/Ifos chemo (3/08-8/08), Radiation to thigh (9/08-10/08), Right Thigh re-section surgery to remove primary tumor (11/08), rehab to learn how to walk again, Deoxyrubicin/Taxotere chemo to fight lung mets (1/09-4/09), Oral chemo therapeutics to keep lung mets in check (5/09-current).

Yes! It’s been a VERY long year and a half! And now I’ll tell ya’ what cancer has cost me and what it’s given me. This disease has cost me: my health, physical strength, lost a home, a job, some friends and family (they don’t know what to say to me or how to handle this…), my dignity and pride (bodily functions and a discovery of new aromas!), I’ve had to depend on others to help me put on my shoes and get dressed, I’ve had male nurses put their fingers places NOBODY has ever been before, Throwing up in parking lots while people look on and think I’m drunk, I no longer have a love of beer (I miss that a lot), I can’t have “tender” moments with my wife because my immunity is usually in the gutter and besides, chemo has a tendency to remove those desires (I REALLY miss that), I can’t chase and play with my kids because I’m always in pain and the chemo induced neuropathy increases pain sensations 10 fold, my toe and finger nails fall off, my hair has left me twice and is coming in now all grey (I am only 45!), my skin and musculoskeletal has taken on the form of a 75 year old (hell! I still wanna be a ROCK STAR!). There’s more, but I think ya’ get the point.

Now here’s what cancer has done FOR me. Firstly, I have always been diabolically, head-over-heels in love with my wife, Dianne, but cancer has given me a whole new appreciation and love for her. All the things she has gone through with me and done for me since my diagnosis has taught me things about her I may otherwise never discovered. I so look forward to growing old with my Dianne! I love seeing my little boys laugh and have fun (even when they’re breaking stuff!) and have only one true desire to dance with Dianne at their weddings someday. I have gained so much knowledge in the last year and cancer has been my greatest teacher!  Having spent 24 years in the medical field, there were times too numerous to count when I would tell a cancer patient that I knew what they were going through thinking I was comforting them…I DIDN’T KNOW JACK! I knew they were in pain and didn’t feel good…but I never knew all the other crap that went with their plight. I never considered the financial and personal ramifications of their disease. I was CANCER STUPID! Now I know the whole story. I no longer fear the mundane issues in life. No longer am I bound by the fear of consternation, if I have something to say, I say it! If it falls on unfriendly ears…Screw ‘em! Don’t like what I have to say…too bad. What’s the worst they can say to me..I have cancer? Been there, done that. I pity the next boss I have when I eventually do return to the workforce. After all I been through, I think I can handle being fired!!! And mostly, I have the greatest desire to “pay forward” all the great things that great people have done for me through this nightmare. I’ve learned that we all MUST get involved to do whatever we can to help bring an end to this damned disease! Anything that causes attention and garnish some funding to help those who truly need it. If you don’t have the financial means, there are other ways to help. Just sending an email that your thinking of them to someone who is afflicted is a HUGE help. There is nothing too small.

Lastly, even as I struggle today with this disease, I’ve learned this about myself and it has become my mantra: Every morning I wake up with cancer and I choose to live and laugh through the day. And every night I go to bed knowing that I won the day and cancer lost.

Each day my story continues…and THAT makes me a “Survivor”…And this is my “Voice”!  😉

If you ever want to talk, vent , questions, whatever…email me at : disintagr8r@yahoo.com or I’m on Facebook.

This entry was posted on Tuesday, August 4th, 2009 at 7:21 pm and is filed under written word and tagged with , , , .