The Dr. today, the melanoma specialist of Utah, agrees with the first surgeon: Try the vaccine injections first.
I can't help but think, Really? This is it? This is the best you can give me? A trial? Am I down to that? Is this as good as anything you got?
I don't know what I wanted to hear, honestly. I think I wanted someone to say "I see this all the time, this is exactly what we do for it, and this is the kind of response we have for it, and you are going to be okay." I never hear that. Not like they are saying I am terminal, but they just make it sound so serious. Dang it!
He said the chemo to the leg (ili) would not work because my tumor is too high up on the thigh. He said that might have been an option if I just had the first metastasis (on the knee) to deal with. So we rule that out. That is okay, I've never been 100% sure on that one.
Biochemo he says would be better with more disease to measure it by. It is a very toxic treatment for a little response rate (which is what everything has at this point I guess). But in some people it provides a durable cure. So that is for sure an option down the road. I thought now too, but maybe I should try something easier.
The vaccine is promising in a small percentage of cases. And that is the case for all my options. And that is why I'm a case right now. It makes sense to these guys to try something that is easier on the body, because I could be one of those great responders. If it works on the tumor it is likely providing a systemic response that is working on any other cancer cells that may be in the body. They inject the tumor (guided by ultrasound) every 2 weeks and see if it's shrinking. Scans every 3 months. Take it out if its not responding or growing too fast.
"How long do we just wait to see if it's working?" "I don't know, what if you saw that tumor shrink within a couple treatments?"
I'm not sure I'm in a frame of mind to decide what is best. This is what the specialists think is best. I need to trust them and go for it. I am filling out the paper work tomorrow and will make sure that is the right decision before we start (hopefully the end of next week). But living with a tumor? That is going to hard.
Why is this stressing me out? A wrong decision could mean pain. Not for me, but for everyone I love. The more they love me, the more they get hurt. Think about hurting your husband, parents, kids, siblings, all your friends. The weight so heavy. I know no one would blame me for anything but they watch me suffer and I watch them suffer. All of them.
That hurts to even write it, but that is what I feel like.
In response to the "how bad is this" question I asked the Dr. today: "I can't give you exact numbers. I can tell you if we did nothing at all you would die of melanoma. I can't tell you if that would be in three months or three years." I'm not even including the most depressing quote.
On the brighter side, let me tell you all the good things the Dr. had to say:
*"I've seen people come back that haven't had melanoma for 30 years."
*"Our goal is to cure you of melanoma so you are around to see your kids get married and all that."
*"I have seen some very dramatic responses with this trial."
*"There are a certain percentage of patients that have it come back in their extremities and it doesn't go anywhere. I've seen it a number of times."
In response to my statement "It sounds so hopeless." "It's not hopeless. One thing you have to remember about melanoma is it's so tied into the immune system that I have seen a number of times patients go into spontaneous remission just on their own. Their body recognizes it and kills it. It's a difficult situation, but not hopeless."
But when I try to get numbers out of him on any of this he will not tell. Maybe they don't matter. I could definitely be one of the some that he is talking about.
How am I today? I am not okay. I have to be strong around the kids. I have to be mom around the kids. I have to put on a birthday party and smile all night. But when they go to bed and it's me and Josh I just want to cry.
A fire truck might have even pulled up to the house today. Just that kind of day. Excited for tomorrow. And it feels so much like spring!