Thursday, May 3, 2012

This is what Melanoma does.

 Since my last post, I must admit my sister has been coming around to see my point of view more. I even called her a Melanoma Nazi yesterday and she laughed. My mom, who just had knee replacement surgery and is recovering, is usually stuck by my side like mama bear whenever I have scans or doctor appointments, but right now she can't. Three days ago I had to have my PET scan and I didn't want to go alone, so my sister came with me. I think it was good for her to see me as "the patient" for once, since I spend all my time taking care of her. The scan itself was uneventful except for the first time the two bottles of scan juice that I had to drink made me sick to my stomach, and I felt awful all during the scan but I forced myself to power through because I didn't want to have to repeat it. 

While I was drinking the scan juice, and sitting quietly in the recliner with warm blankets on me before the scan, I could hear my sister in the waiting room telling another person about how bad Melanoma is. I was so proud I almost cried.

I won't know the results of the scan until next Monday, and Deni will be with me for that, too. I did get a call on Wednesday afternoon from my oncologist's office and it scared the hell out of me. I thought for sure they were calling to tell me there was something on the scan, but no, they were just returning my call from two weeks ago. Sigh.

Yesterday I was so pissed off and angry, but today I am just...resigned. I had called two weeks ago because I wanted to know why they didn't schedule the brain MRI with the PET scan like they usually do. The nurse that called said my oncologist has decided to put me on one PET scan and one brain MRI a year now. I have stage 3 melanoma and it WAS in my lymph node. Also the depth of my melanoma wasn't good, either. That mean I'm at high risk of recurrence. The only way to stop Melanoma is to catch it early, especially in the first two years after diagnosis. It's only been one year for me. National follow up guidelines for Melanoma say the scan schedule should be 3-6 mos for the first two years, then decrease afterwards. I compromised enough as it was by not going for the clinical trial and doing the scans every 6 mos. Granted, most of that had to do with my mom saying she wouldn't take me to Moffit in Tampa for the trial, and her and my oncologist basically ganged up on me and said no Interferon and scans only every 6 mos.

I feel like I've compromised enough. After all, this is my LIFE we're talking about. So when the oncologist's office called, I spent the rest of the day in tears. Even Deni told me I was being a bit of an alarmist, but then later she apologized. 

When you have cancer, it's important to have a good support system that is knowledgeable and supports whatever you decide to do. It's also important to have a medical team around you as well. I hear so many other melanoma patients talk about how their oncologist's are so amazing, are aggressive and understand all about Melanoma, but I really feel like mine doesn't. I don't feel like he's on my side, I never did. I wish when this whole thing began that I had put my foot down and found a way to go to Moffit for everything including my follow up. If I could get there now, I don't know that they'd accept me seeing as how I'm NED right now. I did try to inquire about the trial a few months ago and I was told it was too late.

I spent yesterday crying, and wondering if my family wasn't right and I should just shut up and do what my oncologist wants. Then I get told by a fellow Melanoma warrior that I'm "making excuses" and if I was serious I'd find a way, even if I had to fly. I don't have money to fly, I barely have money to eat. I am an American that has no insurance and no money, and seemingly, no support. Now I feel like the only people I get support from, the fellow warriors on Facebook, are thinking I'm wishy-washy and a complainer. So I feel again like I'm in the middle and everyone is unhappy with me. 

I did talk things over later with my sister and she saw how upset I was, and I think she finally understands. Now she is being my mama bear, saying if my oncologist doesn't listen to me and agree, then we'll go somewhere else. She knows I tried finding another oncologist locally but to no avail but she told me to relax and that she would take care of it. 

Thank god, someone is on my side... finally.

Melanoma is FAST and as we all know, deadly. To have only one scan a year right now is just irresponsible and very risky. Let's give Melanoma a YEAR to spread to my organs before we catch it... uh, NO. This is my life. 

This is what having Melanoma does to you. Not only does it ravage you physically, it ravages you mentally. It changes your relationships with everyone around you. It make you BEG people to understand. It makes you wonder every single day if and when it will come back and if you'll be able to fight it off. It makes you question those around you, it makes you question your own sanity.

It makes you want to go back to before everything started when everything was NORMAL.

But there is no normal anymore. Just Melanoma. And it hurts.

1 comment:

  1. Sounds like finding a new oncologist is a great step. With a disease like this you truly need to completely trust your oncologist, and know that they are on your side. You sound, not at peace with the watch and wait decision. I think thats your sign you need to do something different. Its not too late to gather all the info you can about trials, and find out what your options at this point are. Like I said before, I'm glad to help if I can, Im in the Jacksonville area. I don't know how to contact you, but you can friend me on facebook if you want to, Darcie Johnson Mangum.