Friday, July 29, 2011

You just don't get it and don't tell me to relax

I'm currently stage IIIb or c, depending on which doctor you ask. I can't seem to get a straight answer from any of them. When I was first diagnosed and discussed my options, my oncologist said he was against Interferon therapy because it makes you feel like you have the flu for a long time, like almost a year, and because the statistics show it doesn't really add any time to a patient's survival. Being the person that I am, I didn't really like the sound of being sick with the flu for a year and having to give myself shots. I figured there were other options out there instead, and there were; clinical trials or observation. I wasn't considered "sick enough" for chemo or radiation therapy, I was in that gray area.

Long story short, if you've read back through my entries you know I wanted to do the clinical trial of Yervoy but due to family troubles I decided not to. My mom wanted me to do "observation", so that's what I'd do. But I have to admit I'm scared. Every time I hear of someone else that is the same stage as me, with melanoma in the same area thereabouts, and they are following up their surgeries with Yervoy or Interferon, I get scared, and a little jealous. I know, that sounds messed up, at least the jealous part does.

I'm not jealous of the pain and suffering, side effects, etc. I'm jealous that those people will KNOW for SURE that they've done everything they possibly could to keep Melanoma from coming back. I'm scared my Melanoma will come back every single day. If it does come back, I will always wonder if I played Russian Roulette with my life and lost. And part of me wonders if my oncologist is the right one for me. Maybe I need one more aggressive?

Unfortunately because of my lack of insurance, I have to accept who I'm given. Now don't get me wrong, this guy is from Shands in Gainesville, very respected, and everyone I've mentioned him to has only good things to say about him. But I don't know if he's a specialist with Melanoma, and if he's not, I don't know how to find one that would see me with me not having any insurance or money.

It's been almost 4 months now since my initial diagnostic scans pre-surgeries. From what I've read online and heard from other melanoma warriors, the first year we are supposed to have scans every 3 months.

My first follow up appointment with my oncologist is next Wednesday and if he doesn't schedule me for a PET scan, and some other scans, I think I might start asking some hard questions. After all, that's what observation is, right? It's MAKING SURE the melanoma doesn't come back, doing blood work, checking my skin, my remaining lymph nodes, doing xrays, cat scans, MRI's, PET scans. If I get in there and he just does a general exam, take my vitals and listens to my heart and says everything looks good, I think I'm going to get upset.

This is my health. My cancer. My life.

I waited to get my mole looked at and it cost me alot. I'm never going to sit back and be that complacent again. If he doesn't follow me AGGRESSIVELY by doing the proper scans and blood work then I will be forced to find someone else. I already feel like I'm being complacent enough by not doing Interferon or Yervoy. If he tells me to sit back and relax, I may have to scream.

Does this make sense to anyone? Do you have to have cancer to understand what I mean??

The other day my sister said to me "I have a feeling I'm going to know more about Melanoma than I've ever wanted to". I apologized and told her I would try not to talk about it so much to her. But if I can't talk to her, or to mom, the only people I can talk about it to are the people online that have melanoma. I'm only 4 months out of being diagnosed. I'm scared. I need support and I need to talk.

A few days later we were watching a reality competition show on tv and one of the competitors was a cancer survivor. My sister said "Oh, I know which one YOU'RE going to root for". I know she didn't mean anything negative by that, but I felt like she was calling me "cancer girl" or something. Yes, I feel for that person, I understand a little of what they've gone through. People can root for their favorite football teams, why can't I root for a fellow cancer survivor?

I guess it all comes back to unless you've had a doctor look you in the eye and tell you that you have cancer... you just don't get it.

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