Wednesday, June 27, 2012
As you know, if you've been following this blog, my breast cancer seems to be in remission - and that has been a great relief. But, the rest of my body is still deep in the trenches of war, doing it's best to hold the fort. Since my last operation on March 12th, a bit of cancer that is 1mm bigger than the last bit that was extracted has grown in it's place; and in addition there are new spots on my lungs lower lobe, and it is also likely cancer has grown in my small intestine. It just wasn't as defined as the other spots. There are also some lumps under my skin, one below my elbow and one above my left knee. They just didn't make it into the frame of the PET, so they are inconclusive lumps. I have to keep a watchful eye on them.
I have spent the last two weeks diligently calling every clinical trial I could get numbers for. I had made it my job to not take no for an answer. I would not give up looking even though I kept getting turned down or "excluded" from these trials over and over again because of my history of breast cancer. 27 of the 30 trials could not hear my boobs cries of victory over breast cancer, and turned their backs on me. I have the chance to join only three. One in Philly, one in Tampa and one in NY. I still have hoops to jump through for each one of these trials and I don't know which one will be The One that I get 100% accepted into.
I'm incredibly frightened by the thought of leaving my home and my hospital. I'm so happy with my team here and the new cancer center is something out of the future, it's just stunning. Tears welled up as I shook 'Ol' Doc Onc's' hand. I felt I wanted to hang on to his limb and climb up to the safety around his neck and look down on the uncharted waters that are about to swell up and pull me in. I don't think he'd understand that I was only trying to cling to the things I'm familiar with. I don't want to leave my care here at Duke - but he said that what Duke has to offer me at this point is a poor relation to what I can get at these other facilities. Earlier I freaked him out by asking, "What if I did nothing? How long would I last?" He just about fell out of his chair. What if you did nothing?!!!!" You can't do that!!!!" I suppose I was just trying to suss out how quickly my disease would advance if I didn't do any kind of treatment. He said a year or there abouts. I need more time than that. I don't want to leave my beautiful wonderful husband, my sweet little bird (who is naughty and bites). I don't want to leave my friends and memories. I don't want to miss out on what everyone is doing. I would miss checking into facebook! I have to do one of these trials.
With taking these combo trial drugs I can easily squeeze out another two years or maybe even more. I'll have side effects, such as photosensitivity (great for looking out on that beautiful Tampa Bay Sun!) The feeling of bruised feet and achey joints. If I think back, I suppose I had it worse during my other treatments.
The rest of this week I'll be trying to get all the forms, fill them out, cross my t's and dot my i's, and see what the luck of the draw is. I don't know where I'll end up.
Living with uncertainty is difficult enough - but when cancer takes away the things you know best and trades it out for something you don't know at all - it really shakes you up.
I'll keep you all posted.