I went through a bit of a bad time last month, but I'm doing better now. It seemed like right around the end of the year so many melanoma people passed away and it really freaked me out. Everyone says don't pay attention to the bad results, concentrate on the people that are NED and healthy, but that's easier said than done. I'm human, and I have a heart. I also have a deadly disease that might kill me, or it might not. But I know the facts. I try to take the good with the bad, reminding myself that those are worst case scenarios, but I have my weak moments, as everyone does.
I had my 3 month body check at the dermatologist last week, and it was great to have Deni with me for moral support. Usually they take me straight back to the surgical room, what I call the "Melanoma Suite", but apparently there was another Melanoma patient in there. I had this strong urge to ask to see him and offer my support, but they said he was 4 yrs NED so I thought he must be doing pretty well.
They put me in a regular exam room and I was examined by two different docs, the first was my derm's intern, then my derm came in. I like her so much because she always remembers me, she always gives me info that my oncologist never does, and she's always totally honest with me.
The good news is that my body check was fine, no biopsies needed. That's 6 months now with no biopsies and that's a great record. She examined my scars and my lymph nodes, making sure there was no nodules or swelling. I had a little swelling on my left armpit lymph node, but she said it was probably glandular. Then she mentioned the clinical trials again and asked if I was still interested in going to Moffitt in Tampa. I tried to explain to her again about my family situation, how I have no car, no money, etc. and how it would be too stressful on my family. She suggested that the Yervoy trial should be available in Gainesville now, and I should ask my oncologist about it. Also a new drug Zelboraf has just been proven to extend survival for stage 3's so I want to ask him about that too.
My PET/CT scans aren't until May 1st, and my oncologist isn't until May 14th. That's two weeks I'll have to wait to get my scan results. Most of my Melanoma friends get theirs the same day or within a day or two. I don't know why mine make me wait so long, except for the fact that he's not a Melanoma oncologist and doesn't have alot of experience with how stressed we get at scan time. I did ask my dermatologist if I could see a Melanoma Oncologist instead of my regular one, and she said the one I'm seeing is the only one in Gainesville that has any experience at all with Melanoma. So I'm stuck with him. I wish I lived near a place like Sloan Kettering where I'd get the best specialists in the country.
Mom usually goes with me to everything but this time she won't be able to be there for my scans or my oncologist appointment. She is having knee replacement surgery right around the time of my scans so she will be out of commission for a while. I was going to have Deni with me at my scans but I don't think she can handle sitting there for 2-3 hours so I may have to just drive myself. I wish I had someone that could go with me. At least Deni can come to my onc appt.
After my dermatologist appt, I told mom about my derm saying I might be able to still get into a clinical trial but I'd have to at least go to Tampa for an initial meeting at Moffit, and her reaction was "I just can't take on that kind of responsibility". I assured her that I wasn't going to do it because I knew it would put too much stress on her and my dad. But a part of me was feeling stung.. again. Hurt. I know people that have Melanoma, and their parents move heaven and earth to get them ANY treatment they can. I know my parents are in their 70's and I would have to use their car. I know gas is crazy expensive, and my dad would bitch about money, and wear and tear on the car. My mom tells me I'm special and to think positive and that she doesn't think I need to do any trials or therapies. I love my mom more than I can say, and I know... no matter what... that she loves me. But sometimes....sometimes I hurt. This is my life. If I ever advance to stage 4, will she say it's too much stress for me to get chemo? Will she tell me to just think positive? Or will she hate herself for telling me just "think positive" right now?
To Deni's credit, she said she would "work the phones" with the American Cancer Society to try and get me into a trial somewhere, but I swear it's too late now. The last time I contacted Moffit they said it had been too long since my last surgery, yet my derm tells me it's not too late. I don't know what to do. I guess I'll just keep the peace like I have been doing and just wait and hope I stay NED for a long time. It would cause so much upheaval in my family and for my mom. I would do anything for my mom, even put my own life at risk.