Intimal Sarcoma of the Pulmonary Artery and Lungs.
February 29th, Leap Day, I was informed I had been diagnosed with this specific Sarcoma or form of Cancer. I made a post to Facebook announcing my release from the hospital the following day, but that was only 1/2 the story. Maybe 10%. I didn't want to write a big long thing and be like "HEY! GUESS WHAT EVERYBODY!?" because I wanted time to speak to those closest to me and have those person to person conversations. In the last couple hours this evening, some very zealous and supportive family members have begun tagging me in Sarcoma and Cancer related posts asking for prayers. As strange as it is to ask for funding or "crowdfunding," we realize that there will be a variety of unforeseen costs as we tackle this beast. We realize that insurance companies are not always there to aid in their members' best interests. I do feel like the "target goal" is leaning on the high side, however, we do feel that there is no reasonable cap or ceiling, to how much can be given to research once I win this fight. A little bit about my story...
My surgeon discovered it during my open heart / open lung surgery (Pulmonary Thromboendarterectomy) to remove the blood clots in my lungs which had grown over the weeks that I had been hospitalized regardless that I was on high dose blood thinners which should have kept them at bay if not begun to shrink them. The clots had become so profound that I was no longer getting blood flow to my left lung and had we not done the surgery, they informed my family that I would probably be dead by this weekend, merely two weeks after discovering the problem. My surgeon also informed me prior to the surgery, there was a "5% risk to life." Never having been in a situation to relate, this was terrifying alone. However, when they opened me up and began to go to work, they found a much nastier surprise inside, hidden amongst the clots.
Intimal Sarcoma is a rare, RARE cancer with from what I understand, less than one hundred and thirty reported cases of it, EVER. It's difficult to diagnose because of its malicious, sly nature to hide inside the blood clots so it doesn't come up on any CT scans or MRI's or the like. The deviousness of it is the cancer doesn't seem to kill people quickly, it's the fact that it's location creates the blood clots and then suddenly prevents you from breathing. As such, it's said that this cancer is most often found during autopsy. Having read some case notes from instances of this cancer from around the world, I found a prognosis for a woman in her late 40's who was given a prognosis of 12-18 months. I was informed at Westchester Medical that while there is no chance at surgical removal, there is a chance to put it into remission through IV Chemotherapy.
I am told that it is "late stage" and "advanced" and "malignant." Regardless, I feel surgical site pain. I do not feel like a cancer patient. My breathing is not impeded, my stamina is complimented by family members. There's room to fight, room to hold our ground. We are fighting it. Yesterday I e-mailed one of the Top 3 Sarcoma specialists in the world, Dr. Robert Maki of Mount Sinai Hospital in New York City. My family and I have been in contact with his office since Tuesday when I was referred to him through a family friend. He's currently doing some clinical trials related to rare sarcoma's and I may be apart of those. Currently we're waiting for the last of my records to arrive at his office Monday from Westchester Medical Center.
I couldn't believe it. 130 cases reported ever. SEVEN BILLION people on the Earth. Not even that but how many of those 130 are of how many generations? So not just 7 billion but many more. There's no words to explain how it feels to learn such things. No words. It's terrifying, enraging, curious, and did I say terrifying? You want to be strong for your family members as they break down around you. You want to be held close by the friends you love yet haven't seen in years. You don't want them to be scared meanwhile every tear they shed you shed with them. It's the scariest thing ever to think that 3 months earlier, you're biggest medical concern was being allergic to your girlfriends cats and dog.
It's all been pretty mindblowing and I think I've cried all the self-pitying tears I can cry and all the happy tears I could shed from the outpouring of support from those who knew before I even did (I was kept in the dark post-surgery to give my heart time to heal.) All the prayers and well wishes and votes of confidence that I will beat this have been truly amazing. I have SO MANY people to thank it's impossible to list them all here. There's still so many people I want to have hearts to hearts with and visit with if possible though I may start chemo or some other treatment by the middle of next week.
Just know, there's a fight going on. I won't be available to hit up the latest bar. I won't be marching with Iona College for St. Patrick's Day, though I've always wanted to. I'm gonna be a bit of a homebody or I'll be an inpatient again for sometime I don't know how long. We're gonna get this into remission. I thought the worst was over when I got out of that surgery. I was convinced of it. Now I'm ready to do it 20 more times if that's what it takes. Please, keep me in your prayers, your thoughts, your well wishes. Light a candle if that's your thing or raise a glass to my health if that's what you prefer, and if possible, donate to our fund to aid in the fight against this horrifible affliction.
Love, peace, good health and blessings to you all!