O Fortuna, like the moon, you are constantly changing, ever waxing and waning; hateful life now oppresses and then soothes as fancy takes it; poverty and power it melts them like ice. Fate – monstrous and empty, you whirling wheel, you are malevolent, well-being is vain and always fades to nothing, shadowed and veiled you plague me too; now through the game I bring my bare back to your villainy. Fate, in health and virtue, is against me, driven on and weighted down, always enslaved. So at this hour without delay pluck the vibrating strings; since Fate strikes down the strong man, everyone weep with me!
Quest for Proton
Getting this proton therapy locked on has proven to be an administrative nightmare. It has been almost six weeks since the endoscopic tumor resection. It took a full two weeks to get TRICARE onboard with approving this very expensive type of radiation treatment, along with its accompanying procedures. Next, there was much drama about getting the specific neurosurgeon booked to install the 2mm stainless steel markers in my head.
***by the way, don’t worry; I’ll still be able to keep my head shaved. Not everyone can rock the bald head (Medeiros); it would have been a shame to lose such a precious natural resource. The bb’s will be countersunk flush with my skull. ***
Between the Midwest Proton Radiation Institute (MPRI), the Bloomington Hospital, Dr. Haddad (Skull BB Installer Supreme), and TRICARE, Dr. Haddad’s late October vacation, MPRI’s Thanksgiving and Christmas vacations, I really thought I was waiting to die because of administrative delays. Not acceptable!
Who comes to the rescue (once again)? Dr. Pelzer. He seems to have the ability to solve all problems with some sort of special surgeon-to-the-stars ‘easy’ button. Whenever things became absolutely unacceptably cluster-fied, I ran to Dr. Pelzer like the little brother that I am. He fixes all with just a phone call. It’s amazing.
With several direct interventions by Dr. Pelzer, things are finally taking shape. Within this week: BB’s will be installed, dental form created (to hold me in place, remember), mask 2.0 made (like the last one, remember?), and CT scan uploaded to the specific software used by MPRI. After all that, it takes 2 to 3 weeks for the physicists to design the particular weapons-grade hydrogen solution.
Serendipity
Given the critical nature of this treatment, we were prepared to wait for the right solution. However, all of this waiting over administrative inefficiencies has proven to be stressful. I am hopeful about the effectiveness of proton therapy. Usually, when someone is faced with a one option situation, that option tends to suck. It would seem, however, that this option shows promise.
I neglected to mention the serendipitous coincidence of this particular treatment. There are five proton centers in the United States. One is not yet operational. Two of them would not have taken me as a patient (proton centers are usually booked, so every new patient accepted is taking away an opportunity for treatment for someone else. The facilities at Harvard and Florida do not accept previously radiated patients for this reason). A fourth facility has the equipment, but their senior radiation oncologist has left to pursue a position elsewhere. As the director of MPRI, Dr. Thornton is the only physician in United States, and possibly the world, who has both the expertise and the authority to treat me. It is an incredible coincidence that he is located right next door in Indiana.
Furthermore, he has agreed to take on the kind of case he describes as “challenging enough to keep him up at night”. (Do not falsely correlate the challenge to risk. The challenge derives from the complicated and unprecedented nature of the treatment, not from danger to me. It would be like someone gave you thirty pages of long division to be manually calculated. The task is well within capability, but contains a lot of extra computations. My head is like thirty pages of 5,436 ÷ 27)
Make Your Own
There are no words to describe this kind of good fortune. The closest approximation would be the kind of luck defined as “the-opposite-of-getting-one-of-the-rarest-forms-of-cancer-ever-recorded, and-at-a-ridiculously-young-age-luck”. Maybe this incredibly rare yet optimal opportunity exists as a result of powerful universal tendency towards equilibrium. If not, I need to start gambling long shots, because fate owes me some short odds on long money.
Do not, however, mistake that last statement as self pity. Pity is not tolerated, much less solicited, in this battle. Life holds no guarantees, and suffers no entitlements. We have found our self in the current position by aggressively pursuing all options, exploiting all opportunities, and clinging tenaciously to a proactive mindset. Luck threw down a gauntlet two years ago. It’s been picked up, and wrapped around a defiant fist. Fuck luck.
