Unexpected Endings

A lot of folks read Angel's post the other day, or saw Facebook posts, and so know that we're both off trail, and that my dad's cancer is recurrent.  I just wanted to fill in a bit more of the narrative for those who are concerned.

During the last three weeks or so, my father had several hospitalizations - one for shortness of breath, which was initially thought to be pneumonia but then was determined to be blood clots in his lungs.  He was anticoagulated (a risky decision because of his potential for brain bleeds, but one that was made in order to save his life, and which was effective).  He was discharged after the clots were believed to be under control, but quickly ended up in the hospital again after seizing.  Neurological tests were performed but they couldn't determine why the seizure occurred - dad's been at high risk for seizure since his initial surgery, and because it resolved quickly, he was sent home again.  But shortly after, he became increasingly lethargic and disoriented, and after a fall in the bathroom followed by a loss of consciousness 911 was called and he was readmitted.  During this admission, it was determined that he did indeed have a brain bleed, but more significant, dad's tumor was recurrent, and had in fact grown to about the same size as prior to the initial surgery.  What this meant was that chemo and radiation were not effective, and that dad's tumor was both aggressive and not responsive to treatment.

The initial recommendation from the neurosurgeon was to perform a follow up surgery to remove as much of the tumor as possible.

On July 11th - this Saturday - Angel and I crossed the midway point on the PCT just south of Chester, WA.  The next morning we woke up with plans to head into Lassen National Park and pick up a resupply box and some food at Drakesbad Guest Ranch.  But during a morning bathroom break, Angel noticed that she had phone service, and had gotten a string of texts informing us about the recurrent tumor, as well as the recommendation for additional surgery.  Within minutes we had decided to hitch out from the trail to head to Vegas, and within the hour we knew, whether we wanted to admit it or not, that our through hike attempt was over.

We got to Chester by mid-morning on Sunday with a trail angel, but weren't able to get out of town until the next day, when a string of buses took us to Reno, where we picked up a rental car and made the 8 hour drive to Vegas.  (Nevada is a beautiful state by the way - we've been across it north to south and east to west now, and it's all amazing desert scenery.)  We arrived in Vegas on Monday at around 8 pm. 

During the commute from Chester to Vegas Angel and mom participated in a conference call with the neurosurgeon, and expressed concern about the recommendation for surgery for a variety of reasons, but he maintained that the tumor was operable. As such, we were presented with a difficult decision.

We had wifi for most of the bus ride, so we spent  our time checking Up To Date and other online resources to try to determine potential risks and benefits of a follow up surgery in our situation.  Despite the fact that the tumor was in an operable location, there were a significant number of factors that made it seems like a foolish risk. There is no data that shows that second surgeries for glioblastoma extend life or improve quality of life, so many experts do not recommend it as a standard treatment.  There seem to be some cases where it may be beneficial in extending life, but those tend to be situations where the tumor was responsive to treatment, and there is a long period between initial treatment and recurrence.  And there are costs to surgery that include additional neurological deficits and an extended period of difficult recovery.  In dad's case, his recurrence was extremely rapid following initial treatment, which meant that his tumor was very aggressive and nonresponsive to initial treatment, and that his brain tissue would still be potentially damaged from the recent radiation, meaning recovery would be even slower than the previous surgery.  In addition, during his previous admission it was determined that he had a bleed in his brain around the tumor site, so anticoagulants were stopped and he would not be able to go on them again should he have clots following a second surgery.  And, most importantly, dad was consistent in saying that he did not want an additional surgery. 

So, as a family we made the difficult decision to forgo aggressive treatment (surgery was really the only aggressive option, and there don't appear to even be experimental treatments at this point for which he might be eligible), and switch over to hospice care to maximize the quality of dad's remaining life.  We consulted with our medical oncologist, who supported our decision and reaffirmed that it was very likely the best of a terrible set of choices if we want to maximize quality of life.  By the next day we were meeting with hospice representatives and planning for discharge. 

Today we left the hospital to spend a few days in an off strip Casino - a long-ish story that I'll be able to tell some day with a fair amount of humor, but for now I'm a bit emotionally exhausted so suffice to say we're here because Leah's house (where they were living) is having the floors refinished, and Angel and I are planning to rent a place where we will stay with mom and dad during this process.  Until then, we'll be at the Sunset Station Casino, floor 18, visited by a string of hospice nurses and CNAs and doing 2 - person transfers between the hotel bed and the bathroom, with its tiny bars of soap and travel size shampoo.

Dad is already in better spirits being out of the hospital.  The hospice provider we are going with has an inpatient facility where they can manage severe symptoms when they arise, so there should be no reason that he'll ever need to be in a hospital again. 

Angel and I are here in Vegas, looking for housing and jobs so we'll be here for mom and dad for the next several months. Our life really rapidly transitioned from the trail life to end of life caregivers - a traumatic change, but one that we are lucky to be able to take on, in a way, because we were at such a flexible stage of life. 


Mary Frances said…
Hey Tim, lots of love to you and Angel and your family during this strange and difficult time.
Eliacin said…
May Tia time be filled with beautiful memories old and new, deep love and gratitude. Peace be with you.