Yesterday I went to the oncologist to see what he had in mind for further treatment for my cancer. I was afraid he was going to say nothing, and that's pretty much what he did say, to my mother's relief. Now, don't get me wrong, taking Interferon and puking my guts up for a year isn't really at the top of my To-Do list, but on the other hand, neither is just waiting around for the next spot or tumor or nodule to pop up somewhere on my body. I had pretty much decided not to do Interferon anyways because of the severe side effects and because studies show it doesn't really affect long term survival, but there is a clinical trial of Yervoy, a new Melanoma drug, that I qualify for. The only thing about it is that I'd have to go to the Moffitt Cancer Center in Tampa and that's a 3 hour drive away. I have no car so I'd have to rely on my parents to take me, and I just know that would be something they'd end up arguing about. They just got a new car and my dad hates putting wear and tear on their car. I would have to go to Tampa once every two weeks for 6 weeks to get the treatment, then I'd have to go back one final time for a follow up.
Because it's a clinical trial, it means that %50 of the patients will get the new drug, and %50 of the patients will get a placebo. I'd never know which one I got, and after everything it could all be for nothing. Mom is convinced that I don't need further treatment, but I don't know how much this is her feeling confident that I'll be fine, and how much it's her just wanting to say I'm cured and put this whole thing behind her. I can't blame her for wanting to just get on with life, she's been so worried about me, but if a tumor pops up somewhere a year from now, she may feel horribly guilty.
Regardless, I've just decided to reject the Yervoy trial and just do observation which is seeing the oncologist and the dermatologist every 3 months. That's what mom wants me to do, and my onc feels good about choosing this option too, so that's what I'll do. I know the rates of recurrence for Stage 3 melanoma are very high, so I guess I'll have to live with the knowledge that it could come back any day at any time. If you look at the rates of survival, they are anywhere from %45-%60 that I will be alive 5 years from now, and those numbers drop for 10 years. Wonderful.
My family says don't look at the internet, don't read statistics, I'm just scaring myself, but I HAVE to. This is my LIFE and I need all the info I can get. I've spent most of today gathering information on stage 3 treatments and trials, and trying to figure out what to do. Basically I've been in tears all day but no one knows it. Mom keeps saying I'm "cured", I'm in "remission", I should be happy. I'm not. I've read enough online now to know what kind of an animal Melanoma is, and I feel in my gut that it will come back, maybe a year from now, maybe later, but it's the sword of Damocles that will be hanging over my head and there's nothing I can do. Everyone says relax and think positive. It's so hard to do.
My surgery recovery has been slow, but again it's only been two weeks since I had all my lymph nodes out. I've been scared of getting lymphadema in my arm, so what happens? I get lymphadema... not in my arm, but on the side of my breast facing my arm. So I have one normal sized boob and one mega sized. Mom says she's gonna call me "One hung low". Ha, very funny. The Onc looked at it and is setting me up for some physical therapy. Apparently they can show me some types of exercises and massages to make the swelling go down. Yeah, this is me sitting around massaging my boob all day. My underarm incision looks really good, the steri-strips finally came off and I think it's healing nicely, including the small hole where my drain was. The incision on my chest is still being a pain in the ass, but it's healing little by little. I see people looking at me when I go out of the house wearing a shirt with no collar. It makes me curious what they are thinking when they see my scar.
I went into the local grocery store yesterday and before I even got to the check out, they were ready for me. The two girls that I had showed my scar to a week ago were there and they put all my food on the checkout counter for me, and made sure I had help out to my car. They even asked how I was doing, and were super nice. Hey, if my scars can help anyone learn more about the dangers of skin cancer, then that makes me feel happy.
The one good thing that did happen yesterday is I got a new Rx for Percocet because I'm still in pain. Yay pain pills, they do help the healing process.
Through all this turbulent past two months whenever I get upset or scared or worried (which is every day), I go to my "happy place", meaning I put on my headphones, put in my Stargate DVD's and just tune the world out. I went through all 5 seasons of Stargate Atlantis, and I'm on season 5 of Stargate SG-1. It makes me forget about everything for a while. I guess when I'm done with them I'll have to rejoin the real world. Maybe I'll try and watch Battlestar Gallactica online again, wish I had those DVDs.
So that's my life right now.
Because it's a clinical trial, it means that %50 of the patients will get the new drug, and %50 of the patients will get a placebo. I'd never know which one I got, and after everything it could all be for nothing. Mom is convinced that I don't need further treatment, but I don't know how much this is her feeling confident that I'll be fine, and how much it's her just wanting to say I'm cured and put this whole thing behind her. I can't blame her for wanting to just get on with life, she's been so worried about me, but if a tumor pops up somewhere a year from now, she may feel horribly guilty.
Regardless, I've just decided to reject the Yervoy trial and just do observation which is seeing the oncologist and the dermatologist every 3 months. That's what mom wants me to do, and my onc feels good about choosing this option too, so that's what I'll do. I know the rates of recurrence for Stage 3 melanoma are very high, so I guess I'll have to live with the knowledge that it could come back any day at any time. If you look at the rates of survival, they are anywhere from %45-%60 that I will be alive 5 years from now, and those numbers drop for 10 years. Wonderful.
My family says don't look at the internet, don't read statistics, I'm just scaring myself, but I HAVE to. This is my LIFE and I need all the info I can get. I've spent most of today gathering information on stage 3 treatments and trials, and trying to figure out what to do. Basically I've been in tears all day but no one knows it. Mom keeps saying I'm "cured", I'm in "remission", I should be happy. I'm not. I've read enough online now to know what kind of an animal Melanoma is, and I feel in my gut that it will come back, maybe a year from now, maybe later, but it's the sword of Damocles that will be hanging over my head and there's nothing I can do. Everyone says relax and think positive. It's so hard to do.
My surgery recovery has been slow, but again it's only been two weeks since I had all my lymph nodes out. I've been scared of getting lymphadema in my arm, so what happens? I get lymphadema... not in my arm, but on the side of my breast facing my arm. So I have one normal sized boob and one mega sized. Mom says she's gonna call me "One hung low". Ha, very funny. The Onc looked at it and is setting me up for some physical therapy. Apparently they can show me some types of exercises and massages to make the swelling go down. Yeah, this is me sitting around massaging my boob all day. My underarm incision looks really good, the steri-strips finally came off and I think it's healing nicely, including the small hole where my drain was. The incision on my chest is still being a pain in the ass, but it's healing little by little. I see people looking at me when I go out of the house wearing a shirt with no collar. It makes me curious what they are thinking when they see my scar.
I went into the local grocery store yesterday and before I even got to the check out, they were ready for me. The two girls that I had showed my scar to a week ago were there and they put all my food on the checkout counter for me, and made sure I had help out to my car. They even asked how I was doing, and were super nice. Hey, if my scars can help anyone learn more about the dangers of skin cancer, then that makes me feel happy.
The one good thing that did happen yesterday is I got a new Rx for Percocet because I'm still in pain. Yay pain pills, they do help the healing process.
Through all this turbulent past two months whenever I get upset or scared or worried (which is every day), I go to my "happy place", meaning I put on my headphones, put in my Stargate DVD's and just tune the world out. I went through all 5 seasons of Stargate Atlantis, and I'm on season 5 of Stargate SG-1. It makes me forget about everything for a while. I guess when I'm done with them I'll have to rejoin the real world. Maybe I'll try and watch Battlestar Gallactica online again, wish I had those DVDs.
So that's my life right now.
Love.
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