Frame it

Wow. Lots of relief and gratitude tonight and some guilt for losing my mind a bit over the past week. Between the stress of waiting on news and the frenetic pace of work and everything else have had a few Fred Sanford moments.


Thank you to my wife Sarah for her eternal optimism and love as well as my Mom and Dad who support me in their extraordinary ways…doing for me what I can’t do for myself when in “Fred mode.”

Neither rhyme nor reason to this but Phish’s ‘Reba’ runs through my ears tonight.

Maybe its because there is no “frame it” song that I can recall and I hope the next time we get some rocky news I will be able locate a mental snapshot of Dr. H’s note above.

IMO I am supposed to try to remember these moments. To be dramatic (something I seem to gravitate towards 0-;) memories such as these can be like armor and sword for the next heart attack; as long as I am willing to locate them in the mental view finder and focus. That’s how faith gets built, at least for me, on a foundation of experience.

Its challenging though because there’s probably always going to be that niggling doubt that this time actually is the big one. Yeah-yeah I may have thought so last time, but this time is it. Those previous disasters were mere dry runs.

If I were smart I’d see that every “big one” starts with that same threadbare internal dialogue that its the “real big one.”

Instead, before I know it, I’m right there with Fred hollering, “Hear that Elizabeth I’m coming to join you Honey.”

Anyways, such as it is, we bag it and tag it…and that’s okay tonight.




Had MRI and got results yesterday at the University of Colorado.  Great news! Tumors in brain are stable to improved.

We spent some time examining grey globs in my pea sized brain. Basically, nothing has changed in the last 3.5 years since they found them. Historically, they expect a fourth of the tumors to not respond to the treatment and require re-treatment and/or other measures (like surgery). With the exception of 1 tumor, all 98 of mine have responded so far. That’s basically a 99% response.

One study posted on NCBI looked at 51 patients over a 10 year period treated with GammaKnife stereotactic radiosurgery (GKSRS). It examined local and distant brain failure rates, overall survival, and likelihood of neurologic death.  Median survival time for the entire cohort was only 5.9 months. Local control rates at 1 and 2 years were 57% and 34%, respectively. Distant brain failure rates at 1 and 2 years were 58% and 75%. Fifty-three percent of patients ultimately died of neurologic death. On multivariate analysis, patients with extracranial disease (eg spread to distant organs or other areas) had worse overall survival than patients without evidence of ECD (extracranial disease).

Another study from 2014 examined morbidity of people with stage IV melanoma. Median overall survival was 5.3 months. Death probability of a patient with brain metastases was twice that of a patient with digestive metastasis, about 7 times higher than that of a patient with lung metastasis and 12 times higher than the death risk of a patient with extra-regional lymph nodes or subcutaneous metastasis.

Not sure what to say about ‘dem numbers…I’ve had brain, digestive, lung AND lymph node metastasis…thankfully, this is one of the few areas in my life where not living up to expectations is a resoundingly positive thing.

I also asked the PA if those monochromatic looking dudes in my head were metabolically dead and the answer was…inconclusive. Short of cracking my dome open and biopsying the best guess is that they are either “deet” or the  gamma knife treatments scrambled the DNA enough that the cells are no longer dividing. We dunno.

What I do know is that I can, hopefully, lay off the hypochondria for a few months, at least until the next scan. I think I have gotten more relaxed (easy to say now 24 hours later, but I do believe this is true) about the process. I was sawing serious logs during the 30 minutes in the tube yesterday, despite the rather alluring siren calls/whale mating shrill broadcast with deafening surround sound inside the MRI tunnel. But its almost impossible to avoid a certain amount of manic and panicked thinking prior to the day.

Somebody on FB recently referred to this as “SCANXIETY.” I like that. Its the beat I’m pretty much dancing to, starting @ a week prior to the big show. Benign, normal, everyday aches and pains become potential, life threatening indications. Anything  from a headache, eye twitch, or head rush from getting up too fast…on and on…whisper to me their deadly symptoms.

What can I do about them? Well…

  1. Talking helps. Lately this just saying to Sarah, “Thinking again. Got this headache and…” She is usually quick to remind I’ve had headaches before 0-;
  2. Pray. Pretty much, a lot. Not sure why that works but it does.
  3. Practice acceptance; attempting to remember that “at the end of day” I don’t have power over any of it anyhow/anyway. I can be miserable or get busy getting busy with whatever is in front of me.
  4. Sometimes I get pissed and sometimes I act out. I try to correct it as soon as possible and move on. As I’ve said before, have not  graduated to super hero. If sometime in the future I claim such a thing, just nod and wave, nod and wave.
  5. Work. I have the “luxury” here of perspective. While work is important, kinda, its if nothing else, full of worthwhile distractions. A Green Beret once told me, “Stress? This is not stress man. Stress is when people are shooting at you.” While I think the human brain is capable of making a “TPS” report as relatively stress worthy as taking fire from a gang of AK-47s, cancer, or whatever, I can relate more and more to what he was telling me today. There are no big deals except when I want big deals.
  6. Work out, everyday. Calms the brainwaves and smooths the turbulence between my ears.
  7. Boys. Hockey. Basement. Hanging out. Drive way. Footballs. Trampoline. Catch. Whatever we do – most of the time 0-; – is righteous.
  8. Sleep. Ah! Sleep.
  9. Elsa sleeping on our couch. The puppy dog is finally down. All praise Jesus.
  10. Mindless television…speaking of which iZombie is calling from the next room. Or should I feel guilty about not working on writing, reading something useful, or a thousand other more noble and productive callings…um…no…

Peace out!

PS. C-man’s team won a second tournament last weekend- their league championship. They are now 19-1 in the last 20 games. Next up is the state tourni. Love this dude.

After winning CCYWHL tournament

After winning CCYWHL tournament