Don’t Rock My Boat

Monday, November 3rd, brought Luke’s first follow-up MRI since the original resection. We opted to have it done semi-locally in Jackson, WY with a follow-up consult of the scan by UCSF. Despite the forewarnings about the aggressiveness of this horrible diagnosis (glioblastoma multiforme – GBM IV), we really anticipated that the first MRI was a given clean slate. Not so.

On Tuesday Luke was at work out of cell coverage. He forewarned me that he’d missed a call from the Jackson doctor and asked them to call me back instead. Around 10:00 a.m. I got the dreaded news. The initial read shows a 2 cm regrowth from an area on the margin of the otherwise clean resected area – apparently one of those microscopic tendrils they are afraid of; the one percent that can’t be guaranteed. My world temporarily shattered – again; eventually, I was able to get a hold of Luke and we both abandoned work for hugs at home.

We are shocked, scared, sad & simultaneously staying strong; though it’s been a lot harder to ignore the grim statistics this time around. This is hardball.

It’s especially discouraging when you consider everything we just threw at this surprise disaster – aggressive brain surgery, heavy doses of radiation and chemo, in addition to diet modifications (no sugar or gluten). Luke’s blood work looks really good for the most part – no free copper, low sugar levels, etc. – making this all the more surprising (for us); but obviously we’re learning – cancer doesn’t care who you are.

Luke’s been feeling really well, as his myriad of adventures denotes. Retrospectively, there were a few signs over the two weeks preceding the recent MRI that things were not as well as they seemed. He started having very small, dizzy episodes that were notably becoming more frequent. The second and worst of which was after a very full week & day, it left him totally coherent but having a difficult time finding his words. This has never happened before. He collected himself to say “that was the weirdest thing ever,” but wanting to further expound upon the experience, could only pull random words again. While this freaked us out, we attributed it to potential exhaustion. He was sent directly to bed and readily recovered after some sleep. Later our oncologist diagnosed these episodes as small pre-onset seizures and readily upped Luke’s seizure meds – which worked like a charm. So, as Luke would like me to reiterate – he is feeling really well; making it all the more difficult to process this information.

On Thursday of the same week we got conformation that the UCSF tumor board agreed that a 2 cm tumor has regrown on the edge of the previously resected area. It was another long week before we heard back from the surgeon as to the operability of the new tumor. While the wait was long, the news was eventually good. Dr. Berger deemed the new tumor operable. Luke is scheduled for his 2nd brain surgery December 4th at UCSF – just over 4 months since his first surgery. There is some chance that it is the result scar tissue flare up, but for whatever reason, doctors can’t tell without physically going in again (yet we can land a probe on a passing comet). Twenty-first century science in amazing on so many fronts, but it can also be frustrating realizing what still isn’t possible and how much is still unknown – say in the fight against cancer…

What follows? Unfortunately, the majority of clinical trials require 6 months between the end of radiation and the next surgery. It won’t even be 2 months between the two for Luke. There are a handful of trials that don’t have this stipulation and there is also a rarely used compassionate use caveat that we’re hopeful might apply in Luke’s situation if we find something promising and logistically feasible.

We’re hopeful to try a vaccine, if possible, in the next phase of treatment. While there are a variety of vaccine techniques, they generally work by training your immune system to detect the cancer cells and fight from the inside out. I appreciate this approach on a variety of levels; additionally, they tend to come with minimal side-effects for patients.  I’m hopeful we can try something along these lines since the standard treatment this first time around seemed to have little, to no effect – nor does it seem to work for the majority of GBM’s given the statistics.

We have many wheels in motion on a variety of fronts; however, there are a lot of variables across the board and it remains unforeseen how things will shake out. A lot depends on what’s found during surgery. We’ve had some difficulty hearing back from the many doctors we’ve reached out to since the majority appear to be back East at a neuro-oncology conference. However, in positive news, we have it on some authority that a handful of the docs we’ve contacted from different locales shared a recent meal at the conference and likely discussed Luke’s case. Let’s hope this brain storming works in our favor. Since there is so little proven in clinical trials, it is difficult to know where to point our compass and dedicate our efforts. A lot of factors have to initially align to match patients to trials; in addition to taking in practical concerns of the number of treatments, the location of the treatment, travel, etc.

We are keeping in mind that everyone wants the same success for Luke – a long & vibrant life. Hopefully the doctors will come through with some positive ideas for the next steps, and the stars and our efforts will align. Our fingers are crossed & entertwined as we step forth, hands held, together with so much love into this all-too-quick, next chapter of this bizarre phenomenon that has deposited us on a the precipice of life. We walk this long, knife-edged, sometimes steep, ridge in unity with our many loved ones – aiming for the summit, careful of the scree and falling rock, one step at a time.