Continued Yatra

Yatra is a Sanskrit word that means a journey, a festival, or a pilgrimage. Although typically the word yatra is used in the context of religious journeys, festivals, and pilgrimages, it is not necessary for a yatra to have a religious context. I would argue that we often find ourselves on these paths against our own preferences and that our job as individuals is to recognize that our path has become a yatra, go with the twists and turns of the path, appreciate the yatra for what it is, appreciate the gifts left along the path for us to find, and do what must be done to continue on the path. This is the philosophy that has taken me this far and now that my path is turning yet again, I’m having to dig deep and find that appreciation and perseverance (a.k.a. stubbornness) that has brought us here.

On February 24, we celebrated 2 years since my initial resection in 2016. In that two years, we’ve seen slight changes that could have been progression but stayed small, I’ve tried a few different types of chemo (some of which were no good for my immune system), I’ve stayed in therapeutic ketosis, I’ve exercised rigorously, I’ve learned to meditate, I had a second craniotomy that compromised my vision, but I’ve otherwise kept my life as normal as possible regardless of where in Texas I’ve had to be at any given time. Overall, I’d say it’s been a good 2 year journey learning about life. So, of course, I had to look back before looking forward and do we ever have a plan for moving forward!

On Valentine’s Day, 2018, I went in for a scan. The doctors eyeballing the scan said something had changed (which, in their minds, means progression of disease), but the radiology report said stable. We discussed the LITT procedure and possible traditional surgery but the surgeons were not on board with either type of surgery.

I talked with my radiation oncologist at the request of Dr. No Naps. By the way, LOVE my radiology team! The verdict from them is that they feel like radiation could help with the worrisome spots. Unfortunately, in order to do the radiation, the beam would pass through my frontal lobe, which could be detrimental. I could lose executive functioning, problem solving, short term memory, impulse control (although that could be kind of fun), planning, and other types of high level functioning. Therefore, we found ourselves in the same situation that we were in in 2016. Do we opt in for radiation and if yes, how do we get into the safer radiation (proton)? After a bit of investigation, we found out that the second round is fewer days of treatment (20 days versus 30), that the cost is somewhat lower than it was in 2016 (almost half) for out of pocket payers, that they’ve implemented a payment plan method for collection, and that insurance is still no more likely to cover it than they were in 2016. I explained to the proton center director that after we fought and won in 2016, the state covered lots of people. However, he says they’ve backed way off on that since BlueCross BlueShield of Texas took over as the healthcare manager for the state. We've already been rejected by insurance this week and I've already started working with the proton center on the appeal.

So there we were, faced with this decision on paying out of pocket for proton versus going with the more dangerous photon radiation. The doctors like to make it about economics because that's the angle for the insurance companies, which I dislike having to do (although I did put an economic argument in my appeal letter). Our decision did finally come down to the following. First, we know my cognitive abilities were preserved the last time. Second, the last time we did this, it bought me 2 years with high quality of life. I've been able to teach, publish, stay academically qualified, and represent Texas Tech at events and conferences. Third, as Jason put it, my frontal lobe is the only one we have in our entire 3-person family. Without it continuing to work, the health of my family is questionable. There can be no travel, gift purchasing, career planning, or even dinner. These things require some ability to think more than five minutes ahead. Men’s frontal lobes mature in the early 20’s, so Aidan can still develop his. Jason, however, is past his prime. Any hope for him developing a frontal lobe at this point is null and void. He’s more of a “fly by the seat of my pants” person, which is great when you are stranded in a remote area of Mexico with the Federales (yes, that really happened). Not so great for normal day-to-day stuff like remembering to pick up things at the store or for remembering that someone needs to come up with dinner plans and a shopping list. Hell, I sometimes give him a list and he forgets to use it. Like I said, no functioning frontal lobe. Without my frontal lobe functioning, my household is likely to consist of an old guy who sits on the toilet and reads political news on his smart phone and a teenage gamer who stays up all night playing on his computer, surrounded by remnants of frozen pizzas, pizza rolls, and taquitos. 

After discussing all my pro-proton reasons with Jason in front of two doctors, I said to Jason, “This comes down to, “what is the frontal lobe worth in dollars?” We decided it’s worth any amount, but the discounts and payment plan help. I then turned to the fellow and asked him what he thought. His reaction was, “I think you are using sound logic.” He’s a smart man. I just met him, but I like him already! The radiation oncologist said his colleagues are going to roast him over this (because of the costs), so I told him that if anyone doesn’t understand the value of my frontal lobe, I’d be happy to sit down with them and explain it to them. He said he knows for sure I could convince anyone, so I’m expecting to get that call!

I feel like I’m constantly saying this, but I feel the need to repeat it here. This is typically a very aggressive illness and even though mine hasn’t grown like most GBMs do, any change is scary to the doctors. They have become accustomed to very fast growing, aggressive tumors that double or triple in size every few weeks. It is possible for that to happen spontaneously with my evil little cells, but so far I’ve been in good shape. Therefore, if the docs see anything that might be change of any type, they want to aggressively hit it with whatever they have. In February they saw something that concerned them so we started looking at what can be done. Understanding the doctors’ attitudes is important for evaluating aggressive treatment that may prolong survival, so I’m not going to say no when they introduce ideas. Especially to proton therapy, something that I know worked in the past, preserves healthy brain tissue, and may give me another several years with high quality of life.

So, our yatra has led us here, right back to proton therapy, right back to fighting insurance, right back to evangelizing proton over photon. We will continue on this yatra, no matter where it leads. I’m resisting the urge to travel to spiritual sites (like many do when on a pilgrimage) because I’ve discovered that choosing to follow the path is a religious/spiritual context in itself. Learning to let go, be mindful of the experience, and do the next right thing is the yatra. It is the path. It is the dharma.

This week we are working out details, getting tests done to prepare for starting proton, and enjoying Aidan’s spring break. We’ve been told to expect treatment to begin in 2 weeks. We know that the treatments are five times a week (M-F), so that’s 4 weeks for 20 treatments. I’m hoping that might mean some weekends in Lubbock! I guess I should ask Jason if he wants to see me that much. On the other hand, maybe I should just not tell him and surprise him. Giving him notice might make him think he should plan something, then he may try to activate his frontal lobe. That could give him a headache and ruin our entire weekend! Thinking these scenarios through convinces me even more than choosing to spend some money to protect my frontal lobe is crucial for not only my survival but the survival of Jason, Aidan, a really dumb dog, and a brilliant momma’s pig.