Surgery

Well we are back in the hotel room after being released the day after surgery. I feeling better than I expected. I am swollen and sore, but the pain isn't as bad as I had anticipated. I have another drain tube to deal with for a week or so, and can't say that I am real excited about it. Over all, the surgery went well. There were no complications or problems. The surgeon told us this morning that he was able to remove a little over a third of the tumor. He told us he couldn't remove it all because the end closest to my arm pit had grown around the artery that feeds blood to my right arm thus preventing him from cutting into it. Another part, around the bottom, was lying across a nerve bundle, also precluding any cutting. So there is still some tumor left. One of the reasons for the surgery is so that the T cells from it can be harvested. One of the things they can do is harvest those cells, which means separating them from the tumor, "clean" them up, and then put them back in my body. Once they are healthy and put back, the theory is they will target the bad cells and kill them off. It is a long shot in several ways, but it can be a last case scenario if we get to that point. I get the feeling after the last several days, that it may be the biggest reason for doing the surgery.

As for any further treatment it is still up in the air. We still haven't met with the oncologist. We did speak briefly with his Physician's Assistant on Monday. What we found out is that I do have the mutation they were looking for. (From the biopsy we did here last month.) The good news is that there are two drugs right now that are showing promise in treating melanoma, but only if you have the mutation. (It's official name is V600E, sounds like a motorcycle I know.) Neither are FDA approved as of today, but both can be used for compassion cases like mine. On a side note, a compassion case is someone like me who is stage 4 and other treatments aren't working to kill the cancer. As you can imagine I don't like the term compassion case. But it is the reality of the situation for us. The one that seems most promising for me is only available at three places around the country. The closest to us is Nashville, TN. So there is a possibility we may have to start traveling to a hospital there. Having not met with the doctor, we just don't know anymore. And we don't know when that will be. We are waiting for them to schedule an appointment.

I will be honest. I have been a bit frustrated with the doctor here in Houston as of late. There has not been much communication with us, phone calls have gone unreturned and lots of questions remained unanswered for us. Personally, I don't like going for so long without some sort of treatment, given the history of my fast moving and growing cancer. Especially being here and not being able to get those answers. But we press on. This has definitely turned into a marathon and not a sprint. And I have been more a little more negative about it all here lately. So last night I had to do something I was taught a long time ago. I simply thanked God for all the good things that have happened and all of the bad things that haven't. Like I still feel good most days, am still very functional, I have not had to deal with any infections or major side effects, I still have the same small amount of hair I started with, the same big belly, I don't have to take too many medications, and I am sleeping again. I still have the best family and friends in the world without question. So, today I will try and stay focused on the good and not the bad. One good thing that did happen this week was I convinced them to take the "pick-line" out of my left arm that has been there since October. As of Saturday I will be able to once again take a normal shower, without having to wrap my arm in plastic wrap! It's the small things.

That's what we know for now. I do know that I have a follow up appointment with the surgeon on Monday April 4th. As we know more we will let everyone know.

Remember everyday to put one foot in front of the other, drink a lot of water, and don't forget to breath..........