I had broken my tailbone on Easter, 2006....for almost a year, I thought that my back was just having a really difficult time healing. After 8 or 9 months of pain, I finally decided that I should see a doctor, as things should really have bene feeling better! They felt that based on the pain and numbness that I was feeling, that I had probably slipped a disc, and ordered an MRI! I waited until after the holiday season (Thanksgiving and Christmas!), so that we would have the extra money to pay for my MRI! The doctor called me the next morning.....January 30, 2007 and told me that I needed to come in the next day and meet with another specialist doctor to discuss the "mass" that they had found on my spine!
I was very nervous, but still blissfully ignorant...I had no idea what they were about to tell me! I met with the specialist the next day and he told me that there was a 90% chance that what was on my spine was a Chordoma...a very rare tumor that grows from tissue that
is left behind during the formation of your nervous system. He then proceeded to tell me that this tumor was malignant, and that although they could operate on this tumor, it was very locally agressive and the chances of it coming back were very high!
The next two weeks were filled to the brim with consultations and tests. They needed to biopsy the bone to verify their diagnosis....unfortunately they were correct. They checked to see if the cancer had spread to my lungs (or anywhere else in the body)....and LUCKILY...it had not! In preparation for surgery in Rochester, I also began meeting with all of the surgeons who would be involved. In the meantime, my other full-time jobs were doing research to figure out everything I could about what this Chordoma was, and making sure that I had the BEST possible surgeon lined up to help me get rid of it!
As my process moved forward, I realized that in order to have the best odds of getting to watch my children grow, I needed to have a team of surgeons who had the MOST experience removing my specific tumor. After flying up and down the east coast for multiple "second opinions", my husband Chris and I decided that the surgeon at John Hopkins was the best choice for me!
1 comment:
Harmony, I hope you get this. This is Tim Rohr from High School. Jen Sally forwarded me your web site. I live in Boston and if there is anything I can do on my end to make your stay more comfortable I would be happy to do so. By the way, I have never known more generous people when it comes to charity than the people in New England. They are always giving for a great cause. Please, do not hesitate to ask me to help with anything. I can even try to raise money here for you. My girlfriend has done some charity work and knows some people that might have good connections. I know Dave Szebeda, Robin McElhatten
and Eric Spinelli all live in the area. They are all invloved with music in the area. Robin is a successful jazz singer and teaches voice at the Berkely Music School. Dave is working with local rappers and other musicians and I think may even be producing local artists. Although I am not in contact with any of them I could try to get in touch with them. Between all of us we may have some good connections. Please don't hesitate to contact me. I can be reached at rohrtr@yahoo.com or by cell @ 508-454-5150. Best wishes to you and your family.
Tim Rohr
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