Before I get into the details of my day
I first want to say that if you
ever find yourself in the unfortunate position
of needing advice and treatment for cancer,
Memorial Sloan Kettering Cancer Center
is the place to go.
Beautiful place, wonderful people.
I apologize I have not called, sent messages, or answered facebook comments. It has been a hectic day and honestly it is hard to keep up with what I have told who. I figured it would be easier to wait and tell everyone at one time.
On to the details...
I met with "The Wizard" today. He was very different than I expected---very friendly, very young, very down to earth. I felt comfortable asking him anything that came to my mind. Right now I am stage 3...Here's the thing about stage 3---there is very little treatment available. This sounds horrible, but it is true, I am "not sick enough" at this point to be eligible for any of the trials available.
I am trying to look at that in the positive way---thank God it has not spread further. However, that leaves me in limbo. Except Interferon, there are no other FDA approved drugs for Stage 3 Melanoma.
Now what? Well, I went directly from my appointment with The Wizard to the radiology department for a CT scan. The Wizard did not feel comfortable with simply the PET CT results because it does not offer the highest resolution picture. A few hours, and a disgustig drink later, I completed the CT. I do not know the results at this time.
On Monday I am meeting with a surgeon to find out if she believes additional surgery is necessary. The surgery would be extremely painful. She would go back into the 3 areas where the lymph nodes were positive---my right neck, both armpits, and remove ALL of the lymph nodes in those areas.
IF I have the surgery, I am eligible for the IPI trial. The Wizard did not seem to believe the surgeron would recommend the surgery, but he said he wanted to find out for sure.
IF the CT scan shows something, I am eligible for the trial.
How do I feel?
I feel bittersweet...Of course I am thankful that I am not worse. But I feel a strong lack of control...How can I have stage 3 cancer and be told I just need to watch and wait to see what happens?
The highest level of recurrence is within the first 2 years. Of course it could come back later. And, The Wizard repeated, there is a chance I am a "cured" person and will never have another problem. Unfortunately, Melanoma is extremely unpredictable.
In regards to my question about Dr. Mustache saying I am an odd case because of the multiple lymph node basins being positve, The Wizard agreed it is strange; however, my mole was on my left side located fairly close to my spine. That could be the explanation for it being on both sides on my body.
In regards to future babies, at this point, I am OK...No freezing eggs, etc, right now.
I will be meeting with The Wizard on Tuesday following my appointment with the surgeon on Monday. I really need to start questioning if the "watch and wait" approach is for me, or if I will do the Interferon that Dr. Bad Mustache originally suggested.
I feel like if I do not do SOMETHING I will never get back to living my normal life.
It totally baffles me (and pisses me off) that I can have a stage 3 cancer and there is NOTHING I can do to protect myself...except for Interferon...Something that is still so openly debated.
I am going to go rest now...I feel like crap. Seems as though every time I have a CT, I feel ill afterwards. I will write more later, just wanted to update everyone.
Thank you for all of the support today.
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