Hi all.
It's been a while since I've dropped in, to say hi, share what's going on, etc….
I'm now 12 years NED.
As some of you old-timers from 17 years ago may remember, I'm stage 4, metastatic/MM.
My last surgery– of 6, 5 with tumor– was on 2/10/04. I was told at the time to seek chemo, and did so, with no response except to "do the basics", meaning interferon, or IL2. I was also told that I could simply take my chances, and come back– WHEN it returned.
Being on the last of my college classes, studying physics (more to keep me going, and prevent me from giving up), I decided to take my chances.
I'd already done a 4 year trial with the NNMC, on GMCSF, now known as Luekine, from http://www.Berlex.com. I'd "exceeded their expectations. and beyond the length of time anyone had been on the drug, and no one knew the long-term effects of the drug."
In 2001, I was dumped, and told– best of luck to you. I had 4 more surgeries after that, and by 2004, I began thinking– I'm really going to die. Even though no one had ever said dying was to be expected.
Well….. I'm still alive. I'm learning to live again, instead of being afraid of dying. There is Hope beyond cancer. There is Hope beyond MM. I've talked with a lot of people about my cancer, and some are afraid of the idea of miracle, in spite of the fact that all my doctors, nurses, PA's, etc…. keep saying that's exactly what I am, and what my survival is.
I won't tell you to not follow your doctor's instructions— unless they want you to do "whole-brain radiation in propholaxis" (WBRP)– because I followed them all to the T. Except for the WBRP. I did all the blood work ups, I did all the radiation diagnostics– I even began to wonder if I was getting Leukemia, or Lymphoma (L & L) because I'd had well over 50 whole torso CT scans, 13+ whole body PET scans, etc….
I did the blood tests, and nada. I'm clean on the L & L.
So….. hang in there. As long as I live, I'll be back to update annually, and answer whatever questions I can. I am however 12 years out from this, and am now down to only seeing my Oncologist once every 5 years, even though I still see my normal doctor twice a year.
Live well.
.
