This is an awesome idea that a few people had, including Matt who set this up for me. So for anyone who is interested, let me tell you the short version of the story and where we are at right now. I plan on updating this on a daily basis (if enough people look at it!) and I would love your comments. Between the tests, treatments and all the other stuff that's ahead I will need something to do in between! So here is what's going on as of today:
For the last 18 months I have been having weird feelings...palpitations, pains, dizziness, racing heart, etc. I was persistent as during all this I have logged three trips to the emergency room, three trips to the cardiologist, two stress tests (stress echo cardiograms), a trip to a pulmonary specialist, a sleep study and maybe 10 trips to my family doctor complaining of various pains or annoyances. Most of the time I heard the same thing....young, healthy, strong, etc, etc. On Sunday (10/12) my grandmother passed away in the morning and it was a sad day for all of us. I was sitting at my Aunt's house with the family when I decided the chest pain I have been having for the last 18 hours was something more than a muscle strain (as it was diagnosed a few weeks ago) and Shana and I went to the ER. After complaining about the same thing again and 3 hours of tests, waiting and more tests, my life changed.
The physician said a lot to me but the only words I heard were "strange mass pushing up against your heart" and "we haven't ever seen anything like it". My head spun as I heard these words and I looked at Shana and she was just as stunned as I was. My cardiologist (Dr. Gorman) explained to me and my family that this was serious and though he didn't know what it was it needed immediate attention and I had to be admitted. All didn't seem so bad though as I was told that I would likely need open heart surgery to remove this mysterious "mass" and 29 year olds fly right out of this kind of surgery. Around 9PM that night Dr. Gorman returned to make bad news worse. A radiologist had further examined my CT scan and found lesions on my sternum and one of my vertebrae and this was likely NOT a problem to be dealt with by a cardiologist. After undergoing a biopsy of bone tissue in my sternum (chest), I had two more CT Scans, an MRI (that lasted 1 hour and 40 minutes) a full bone scan, a few x-rays and an ultrasound.
The initial diagnosis is a cancer called angio-sarcoma and according to the doctors it is aggressive and stage 4 as it has spread from it's initial location (my heart). This type of cancer is so rare that only a few places in the country can evaluate and treat it so I was put in an ambulance and sent to Brigham Women's hospital in Boston (nice 5.5 hour drive in an ambulance) to begin treatment at Dana Farber. My doctor mentioned something that I can't stop thinking about. Angio-sarcoma in the heart is extremely rare and he said there are around 200 cases of this in the US each year. I should know more about the specifics of my case over the next two days as the doctors here do their tests. They believe the initial diagnosis is accurate but are taking a second look just to be sure, so I guess my situation can change once they are finished with their analysis. But as of right now my doctor thinks that he can treat this and that I can fight it and though it won't be easy or painless, he believes I have a good chance to pull through this and so do I. I have been hospitalized since Sunday and will remain hospitalized until cleared by a cardiologist to go home. Since this sarcoma has grown both inside and outside my heart, I need to be under constant cardiac monitoring as I have developed some issues with my heart rate and rhythm. That's why I had to be transported to Boston in an ambulance.
I have to thank everyone for the unbelievable outpouring of support I have received the last few days. In just 3.5 days I had over 50 visitors at the hospital and hundreds of emails and texts checking in on me from friends, family, co-workers and people I don't even really know. Shana and I have had so many people to lean on the last few days I don't even know what to say except that we have the greatest family in the world and some of the greatest friends in the world. I know I couldn't do this without them and without Shana, Mom, Dad, Matt and Liz who have given me so much strength. Thanks everyone - your support has motivated me in ways that only I can understand.
I have to say I am both anxious and excited to get started tomorrow (Friday). I will meet the "dream team" of surgeons, oncologists, radiologists and cardiologists who will be mapping my course to recovery. Not sure yet what that will look like but I am ready to take this on and I am going to win.