Advocacy

My trip to Queens  medical  center  in Honolulu  got  off  to  a  bumpy start . I  flew in Wednesday  night , got a hotel  room , and  tried  to settle  down  before  my 7:30 am PET /CT. At 6 am I  got a call from the scanning  department  that  the  infusion  machine  was not working , and that they had to cancel  until  it could  be  fixed. Part's  would  need  to be ordered  from the mainland . Part 1 of my meltdown  was under  way. I decided  to head over to the cancer  center  at the hospital  anyway  since  I  was  scheduled  to see my oncologist  at 2:30 pm to review  the scan . They were  just opening  the door  at 7 am when I  arrived . I told  them Pet/CT  was offline . They  said sit tight  until  they  knew  what  to do with me. At 8:30 they told  me to fly back  home  since there would  be  nothing  to review . Part 2 of my meltdown  kicked in.

They didn't  know it, but besides  reviewing  my scan, I  wanted  to push  my oncologist  to get on board  with  me  getting  to  UCSF . I asked  if I  could  still  see him? At 9 am they said  yes. Part 3 of my meltdown  was wandering  aimlessly  throughout  the large grounds of the medical  complex trying to convince  myself  to not  give up on the entire  process . I was  angry . So angry . Not at anyone , or any one thing. Just so pissed. For the next 6 hour's  I   wandered. 

At 3:00 pm I  saw my oncologist .  I pleaded  my case bringing  him up to speed  on my most current  developments ,and my commitment  to working  with melanoma  specialists  at UCSF . He was extremely  attentive , supportive , and  willing  to jump on board . For the next 45 minutes  we hammered  out a team work  approach  how to proceed . I showed him several  of my new lesions  which  he  looked  at very closely .  He said "They look totally  benign . " I said yeah,they all have. Then, I  swear I  saw the light click on. He wondered  a loud  " I  wonder if you are truly  metastasized to the epidermis  " He got it. And at the same time, I got it. I have been so frustrated  that no dermatologist  was catching  my melanomas  over the year's , and I kept shopping new ones  thinking  incompetence , rather  than just a unique  version  of the beast. But  only after developing  a keen eye on my lesions  have I been  so successful  at catching  them. They  truly  don't  look that bad to anyone  but me….I get it. I've  been  floating  the possibility  of epidermatropic  metastatic  melanoma  for some  time now. I feel  confident  my team is nearly  fully assembled. I'm not so pissed as earlier  in the day…rather  happy  actually . 

I want to thank MRF for making this forum  possible , and each and every one of you who share your  stories  here. The good , the bad,the ugly ,the triumphs . ….and the sad. It all blends together  for the benefit  of all . I appreciate  the advocacy  of everyone  here. Every  story is important , and helps in so many  ways . 

Bob