We have been waiting this week to hear from the experts at Dana Farber as to the actual subtype of my husband’s sarcoma. He began treatment yesterday despite the lack of information. I think he felt he needed to start doing something. It makes me anxious.
My man is convinced it is Leiomyosarcoma and therefore doesn’t think the doctor will have any new info. But if only 4 in a million (or even 1 in a million as I read on one website) get this disease, it seems likely that it might not be LMS.
I asked Dr. B at DF if we should be rooting for one type of Sarcoma over another. He said the best scenario would be no sarcoma, uh Duh!!! I was on line again last night looking at this site (the most comprehensive LMS site I have found so far- although the Coping page is under construction- get on that would you!) and the fear started to creep back in. I am hoping it isn’t LMS- but I haven’t thoroughly checked out the other possibilities so who knows. They are: Rhabdomyosarcoma, Ewings sarcoma and one other whose name has slipped my mind.
Here is what Leiomyosarcoma looks like- sort of like a field of flowers if you ask me. I showed the picture to my man so he could use it to envision the radiation killing the cancer cells. He described to me the cartoonish little aliens he had envisioned screaming and running from the radiation rays. I suggested that perhaps he could work on a graphic novel about cancer. He thought one may already exist. And look what I found.
I just got off the phone with my man. He said, his cells are wearing helmets and carrying swords. I reminded him to make sure he was picturing them dyeing- not just running away. We need to cover our bases. Let their heads roll like in Sparticus (the Starz version,) very violent- a favorite of my husband’s.
I asked him if he had heard from Dana Farber, he hadn’t. I said he should call and then agreed to do it myself. I feel like I need contact with a doctor, a bit of reassurance that we are on the right track. In between communication with doctor’s I get a glimpse back into normal life. And part of me likes and needs these pauses, but then I get nervous. I just want to know 100% what our plan for this cancer is? Would love to hear what others affected by cancer have to share on this topic.
Speaking of others with cancer, I found this blog and the name alone drew me right in! I want a tee shirt for my man.
This experience is a bit like walking a tightrope; despair on one side and hope on the other. Yesterday I was leaning very clearly toward hope, today one foot is dipping into despair. But only one foot- or maybe even just the toes.