Hello friends. I am happy to report after spending the better part of the day at Memorial Sloan Kettering that my tumor while not definitively benign is not a metastatic form of sarcoma. It may be a non-metastatic form of sarcoma or a precancerous mass, or a benign but unusual mass. It really doesn’t matter which of those three things it is because all three require the same surgical “cure,” and all three can cause the nerve damage and deformity that my current tumor is causing.
So, it’s gotta go before it causes worse nerve damage, but the doctor who has actually seen and treated this kind of rare mass before is traveling next week. So, he wants me to have a caregiver and come back when he can observe me for at least the first 24-48 hours in case he has to go back into my arm for any reason.
It would be very expensive and emotionally draining to stay in NY for a full week before my surgery, so I’m doing pre-op tomorrow, then going home and coming back on Oct. 2 for surgery. I will need to stay a week for drainage tubes to be removed and to make sure I don’t have any infection. One to two days post op will be in the hospital, I need to find accommodation for the remaining time.
I’ve been SO SO blessed by the most generous souls in NY. A lovely woman named Ann Cutbill Lenane took me into the spare room of her gorgeous apartment, sparing me more than a thousand dollars in hotel room bills. She also lent me the services of the driver she uses, a lovely man named Carlos, and a new friend Laura met me for tea and waiting with me in the waiting room before she had to leave. I feel like I have angels all around me here. I even lost my phone on the floor of a cab today and got it back in less than an hour.
This surgery is going to be very complicated, delicate, and eventually very painful. My complete recovery may take up to a year with a lot of physical therapy at the beginning especially. It’s going to be a long, hard road BUT this is in everyway the best case scenario, and I am beyond blessed to have come to New York, found a doctor who understands the risks to my hand, and a group of new and now life-long friends who have rallied to support a stranger in a strange city. And then there are my old friends who have supported me with loving words, generosity and prayers.
Yeah, I’m going to have a really intense surgery, have three weeks of unpaid time off, and spend some money on travel expenses, BUT I don’t have a bad cancer, and I might not have any cancer at all, only time and the pathologist will tell for sure. Regardless it’s curable. I’ll come back once a year to make sure it hasn’t come back, but I will be OK. Thanks to all the people who love and support me, I will be better than OK.
My sincerest thanks and affection,
Amanda & Family
PS – Jim and I will figure out when and how to reschedule our anniversary party once we catch up from these expenses. You can find the go fund me link in older posts or I’ll add it later. Right now I’m just happy to know that there is a timeline.