Size of Folder Matters

In one of the Facebook groups I am a part (Melahomies United) fellow melanoma survivor Kim Reynolds offered the following words of comfort to someone having trouble keeping the faith in her fight against cancer.

“…When I learned that yervoy (a cancer immunotherapy) wasn’t working, I felt like someone deflated my happy balloon. I’d tried to stay so strong and keep that “fighter” attitude … but I was TIRED. I cried in front of my oncologist and was explaining to her that ‘I’m tired’ … I’ve been in this fight for nearly 3 years of constant fighting, and I’m tired. Know what she did? She clapped, smiled, and held my shoulders to let me know that she understood being tired … but she also related that she had been treating melanoma long enough to know that a handful of years ago I wouldn’t have had the opportunity to have been fighting for 3 years. She told me about how her melanoma patient files had always been so thin … because her patients died so quickly. She smiled and said “I know you’re tired, but I’m happy to see that your file is fat because that means you’re still alive.”

Most profound sister!

After nearly four years I can relate to potbellied folders. While the University of Colorado health system is online, there are other doctors’ offices that have not implemented such modern measures. I remember Dr. Hamid’s office in LA, for instance, and the nurses lugging a binder of biblical sized proportions into the room as an army of angry Ents (trees) wailed and scratched their limbs on the windows outside…and that was just the accumulation of a few months of weekly visits. Imagine today how ginormous my folder would be, due to bulky numbers like these:

  • 50 PT/CT Scans
  • 60 flights to different cities for treatment /consultation
  • 10 radiation treatments
  • 12 gamma knife treatments
  • 60 MRIs
  • 70 infusions
  • 3 endoscopies
  • 1 colonoscopy
  • 4 major surgeries
  • 5 biopsies
  • 2 ER visits
  • 100 blood tests
  • 70 trips through Walgreen’s drive prescription windows
  • 60 doctor’s visits

That’s some potential paper.

I can also relate to the seemingly endless, ad nauseam doctors visits, scans, blood tests, phone calls, consultations, surgeries, meds and treatments…as well as getting/being TIRED.

Yet I’m reminded of a trip to Peru in high school in which we toured a hospital in one of the miserable, sprawling slums of northern Lima – a filthy, miserable hell on earth. They had a BYOM (bring your own meds) policy. Families had to first pay a visit to the pharmacy next door, if they could somehow afford the prices, to buy overpriced medicines that doctors would then use to treat patients down dirty, overcrowded corridors. I wonder how much paper someone with cancer got generated there? My guess is very, very little. If anything, the folders were like gossamer, as frail and anemic as hope in that place.

Got to remember I have the luxury of a thick “folder” today. Its filled with the scrawling words, test results, checklists and sticky notes of doctors, office staff, nurses, physicians assistants, and nurse practitioners, insurance folks, lab and radiology technicians…as well as the energies, efforts, prayers, directions, support and well wishes of family (especially my wife Sarah), friends, coworkers, Facebook homies, church members, they-who-will-not-be-named-anonymous members, strangers on the plane, in the elevator, and front desks of the world.

Thanks everybody! I will try to remember that the proverbial binder is no heavy anchor around my neck but a blessing…and to those struggling tonight, keep working on that paper man! Size matters.

PS. We just reached 10,000 visits to www.98brainturmors.com in three months. Adding that to the story.

PSS. Got CT/PET Scans today – stable to improved. Also folder worthy.

PSSS. Going on two weeks without Gluten. Quite awhile ago I “failed” the celiac test (absence of antibodies) so I didn’t think that was a thing. But have not had any major nausea and cramping flair-ups. So it may be a thing indeed. I will share more on this later if it proves out.