Harmony's Journal

Harmony's in Boston now....

2007-08-15T19:14:00.000-07:00

Since Harmony's Hope has been all over the news and the papers, thanks to Jonathan....I thought that I should give everyone an update on me. I moved up to Boston on July 29th and had my first proton beam treatment on July 30th. Thanks to the extraordinary generosity of family and friends, I was able to get my family and I, a furnished apartment a block from the hospital. I have treatment 5 days a week and have been travelling back and forth on the weekends. Everyone in the treatment center is so amazingly kind and caring. They have been so good to the kids, with candy and games and Music therapy on Wednesday's. The radiation has not affected my energy level yet, so we are still able to adventure around the city every day. The total number of treatments that I will need is 39 and today was number 13....so there is still much more to endure. My wonderful husband Chris, who was home last week, decided that he wanted to be here to take care of his family...so that has been FABULOUS, to not be in this alone and to have my whole family here with me, gives me tremendous strength to push through this final phase of my battle with this illness.

I really appreciate the generous donations that people have made through this raffle: Mark & Michelle Vernacotola, Pamela Apt, Lisa Morrow, Michelle Archibald, Richard Sippel, Kiki France-Perry (who has also been sending toys to my kids!), Catherine Butry, Donna Fratangelo, Marilyn Congdon(at such a hard time for you, thinking and helping others is very touching to me!!!), Elizabeth Herbert, Susan Vanderwall, Megan Angelo-Hanrahan (have not seen you in years), William Williams, Pamela Kasperkoski, Kelli Foster (whose mom is also battling breast cancer), Debrah Belbas, Duane Gosley, Amy Gregory, Jason Turk, Kevin Pietrzak (who has helped me in so many ways, love you), and many others.....

At this point they can see no regrowth of my chordoma, and are giving me the highest dosage of Proton Beam radiation that is possible...so I am really hoping that this will be the end of this madness for me, and when I return to Rochester at the end of September, I hope to be permanently cancer free and not look back---

I REALLY appreciate all the positive vibes and the caring that is being sent my way!!!!!!!

Healing up Nicely....

2007-05-30T06:55:00.000-07:00

I had my final check up with Dr. Mitten in Rochester, and he gave me the green light to exercise again and submerge my wound and start being a regular person again. ....woooo hooo! He told me that things are healing fabulously and that is so great to hear. I think that I might be out of the woods for now!

I am back to my eliptical machine now and was able to do some yard work over the Memorial Day weekend, which makes me extremely happy! Now my next step is to have my check up with my Surgeon at John Hopkins. My husband and I are flying to Baltimore on June 4th for x-rays and a follow up!

My other dilema is my Proton Beam radiation. This radiation is only available at a few facilities across the country. I would like to have this done in Boston at Mass General, but because it is the best place in the world, there is a high demand and a waiting list situation! I really wanted to have this done over the summer so that I could bring my 2 children and not have to leave them for 2-3 months! Cross your fingers for me that I can make this happen!!!!!

A little background......

2007-05-14T14:01:00.000-07:00

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!