Monday, February 13, 2012

Life After Treatment

I know I should write more often but life is busy and I find it hard to put my thoughts down. What I write comes across more serious than who I am.

Last week was a great week. It's been four months and on Monday, February 6th I had a CT scan of my lungs and an MRI on my leg; the results all came back showing no sign of sarcoma. I have to go in every four months for the next year and half and have scans to make sure the sarcoma doesn't return. I'm feeling good and I would say my health is back to about 85%. My doctor says that it takes about a year to recover completely and feel like you did before you started the process. I truly feel like I have been cured and that the sarcoma has left my body to never return. I'm back to running 3 miles 2 to 3 times a week. That feels like another hurdle completed. You hear about people losing weight while going through chemo treatment but I gained about 10 pounds so I'm working to lose the extra pounds. All my hair has grown back; it came in thicker and more all over. It also came back wavy. I like it but I'm still getting used to it.

During my treatment I took part in a study for a trial drug. There were 15 people in the study and I was one of the last to join. The study was to determine proper dosage of a trial chemo drug. I was put on the highest dosage and about a week into the study I broke out with a rash all over my body. They lowered my dosage and that dosage is what they are moving forward for a larger study. The great news in all of this is that everyone in the study (for some it has been more that 2 years) none of them have had a recurrence. As I have said before, 2 years is a big milestone. I have a 67% chance that the sarcoma will not return but in 2 years that percentage will improve even more. The larger study will be to see if the trial drug cures or increases the life of those with sarcoma.

This has been a huge life changing event that I'm still figuring out. Close people have passed away in my life but not until I was in this situation have I been able to appreciate life, my family and friends the way I do now. I would hear about others that would get sick or were in an accident and I would think about it for a minute and forget about it or think it can't happen to me or my family. I believe it is a protective mechanism so I don't live my life in fear of what could happen. Since I went through this process, I have an intense appreciation for life but as time goes on and life gets back to normal that feeling lessens and this frustrates me because I don't want to lose the appreciation for life. I believe that this is one of my life lessons.

I also feel like I say this too much but I don't know any other way to express my gratitude. I want to thank you all for the support - especially my incredible partner in this life Julie. She took care of me, the kids and the house. She is truly an incredible person. It was not always easy but without her love and support it would have been a lot more challenging. Below is my new mantra. I believe this was quoted on Oprah's show from a Drew Faust book.

"Every death is a wakeup call to live more fully, more completely and more presently." Let us not miss an opportunity to live our lives, and in the process, I hope we learn to fear death less.

6 comments:

  1. Hello Mike,
    I am sitting going through the many blogs I bookmarked as a result of endless days and nights of searching the internet for anything related to Ewing's Sarcoma. Our son was diagnosed January 2011, has had surgery, chemo and radiation and was finished Oct 1, 2011 and has been NED since. So as I said I am going through book marks and yours was one I had added to my list. I see from your last post that you are doing well...so happy to hear! Keep on keepin' on! Alli http://roomtobreathedotorg.wordpress.com/

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  2. I have enjoyed following your blog and am so incredibly happy that you are able to label your most recent post "life after treatment". In 2003, my brother lost his battle with synovial cell sarcoma, and it has inspired me and my family to fund research and do more research ourselves. Bless you, and good health to you!

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  3. What kind of sarcoma do you have and what was the trial drug?

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  4. The article is an encouragement to those going through difficult times.May you continually be strong.Newton Kenyatta University School of medicine

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