josh: Update Hello! The weather is great in Texas.
I'm feeling very good today - I've been back home and working for a few days now, and the impact of the steriods I'm taking from the second (excellently performed) brain surgery I had a week ago is less annoying that I was expecting.
I have follow up appointments with my doctors next week, and that's normally when they present me with the pathology report(s) that are based on the surgery. This time, though, I got a copy of the pathology report myself in advance. I knew I would not be able to understand all the details, but at a high level I can see what's going on. The new (second) tumor is definitely Glioblastoma Multiforme (ďGBMĒ) like the old one - the report I have doesn't drill down yet to the lower level analysis - the first tumor was IDHx wild-type, MGMT unmethylated, so this one probably is too. And they're not close together.
But let's wait! I'll post a more definitive status next week after I have meet with the doctors. Like last time, they probably will discuss my case in a group about tumor treatment plans, and I'll post about that too.
For now, I'm still sort of in limbo on the data and how the doctors will interpret it, and I probably have too much data for my own good at this point. I choose to enjoy my current lack of processed information rather than freak out on it :)
Staying positive and enjoying each day has turned out to be key in this experience. In these updates, I have for the most part avoided negative posts and I plan to stick by that.
(hereís where this post goes negative)
But sometimes I feel disingenuous when I completely exclude the short emotional dips. I had one when I was coming back to consciousness after surgery last week -- for the rest of this post, I'll try to describe it. First, some background:
Quick recap: I had a seizure late July 2018 and went a few weeks without knowing what caused it. An oncologist said it was probably "low grade astrocytoma" (and that only surgery/biopsy could confirm this). With some time on my hands before the next magnetic resonance imaging ("MRI") exam, I did what everyone told me not to do - I got on the internet and started looking stuff up - fixating on survival rates for different types of astrocytoma.
In the process, I unintentionally set some baselines in my head that have stuck with me. With a lot of websurfing, I found average survival rates for 1 year, 2 (or 3) years, and 5 years from diagnosis, including rates for lower and higher grades. The numbers from different sites were often not consistent, but I didn't let that stop me. I picked certain numbers and they stuck firmly in my emotional data storage area. I quickly lost track of the sources for the numbers and my recent efforts to re-find them have not been successful. Assume they are all wrong, because they probably are - this post is about feels :)
So to set the context, consider that I have a skeptical but firm emotional survival rate table stuck in my head.
For low grade astrocytoma, the survival rates started pretty high at 1 year and dropped to 44% at 5 years -- this is where I set an emotional base line.
Being in good health and kind of young (I was an 80s kid), I built up some confidence that I could be in that 44%, and that if I made it past that 5 year mark, maybe I could just keep going. I never forgot the lower rates which applied to the higher grades of the cancer.
After the first surgery in early October 2018, we learned that the single tumor on the left side of my brain was in fact Grade IV GBM. I automatically checked my emotional survival rate table. Thanks to the unmethylated wild-type status of the cells, that 5 year 44% number dropped to 2%. The 1 and 2 year numbers fell quite a bit as well. I remained optimistic but couldn't ignore that my safe place just shrank by a factor of 22.
The sounds of the MRI machine were joined by the sounds of a radiation therapy machine.
At that point, my emotional survival rate table still had one lower row with numbers for when GBM has spread to both sides of the brain. Things were bad, but I was not at the bottom.
I canít talk about the emotional impact of an experience like GBM without talking about the involvement of family and friends ("caregivers").
My doctors specifically recommended we avoid the internet forums about home-brew additional treatments, special plants from the Far East, etc., and simply stick to what the doctors instruct. With low survival rates, I believe this is difficult for caregivers, who want to identify, evaluate, and use all available means to extend life. And there are many caregiver internet sites/forums/etc. to read about this.
Confession: I donít think the alternative medicine approach works for GBM. That alone doesnít completely devalue it, but if a caregiver burns through a bunch of resources which would be better spent on the family (before and *after* the death of the patient), thatís bad. I also fear that the alternatives could counter the effect of the doctor-managed treatment. Iím guessing of course.
Yes, I'm aware that strict adherence to standard of care and clinical trials without alternatives suggests a bigger concern for trial integrity than for the survival of the individual patient. Clearly a topic for another evening.
I understand why caregivers get fixated and frustrated. My wife is very well educated in the medical field and largely able to keep her cool where many people (including me in her place, Iím certain) would go off the deep-end. Nevertheless, when I see my wife reading and reading and talking about all this information, I want to ask her to stop (I donít).
Coming out of anesthesia after my operation on the second tumor a week ago, I saw my wife reading on the internet about GBM survivors and alternative medicines, and the emotions hit. I had an overwhelming feeling that she must cut away from me and turn 100% of her attention toward rebuilding life for the family after I was gone, and that she needed to hear this firmly.
Now feeling sure that the GBM had spread significantly, the emotional hit started with a forceful recall of the bottom row of my survival rate table.
Five years: zero. Two years: zero. One year:
Hereís what completely took over my groggy head. If you remember this, you were an 80s kid :)
Public Enemyís song about cheesy media manipulation hiding the truth, now repurposed to describe a damned husband and a widow-to-be who must be confronted to wake up and let go.
The mapping from the original to the updated song wasnít perfect, but wow - the update was *way* more detailed than the original. Performers were: me appearing as the fictional "hero" or "dude on the tube"; my wife as the redeemable but "blind" subject; the internet sites as Channel Zero or "that garbage"; the radiation machine as the clanky repetitive sounds; the zeroes as themselves. (The Super Bowl and the quarterback sat this one out.)
For some backstory about the "dude on the tube", with more 80s nostalgia and GBM appearing as Josef Mengele running clinical trials, you can find the lyrics on the internet for the sampled Slayer song ďAngel of DeathĒ (80s kids will already know the lyrics, of course) and then do some reading about GBM symptoms. Or I have a better idea - donít.
There's my negative post. And yes, it felt like this sampled rap song had been stalking me for three decades, waiting for a head shot.
But even in that state, I never completely lost the feeling that I can break those zeroes. All of them.
[edit: went back through this a couple of days later, and yeek! pretty morbid. I guess I was thinking Flavor Flav would save us, but I'm not sure. I'm going to leave it up because it would be weird to delete, but I thought I should update to emphasize that this was an attempt to describe a very short period of time when I was coming up from being anesthetized - I am actually really happy pretty much all the time :) ]
Here are a few picks -- first is the tape coming off the incision,
The second is the staples (once again, I can't bring myself to count them - some aren't completely visible in the picture) - you can still see some of the scar from the surgery 6 months ago, on the top (alongside the right of the new scar) and left side of my head, but it blows my mind (careful with word choice, josh...) how much it has healed,
And the third my beautiful daughters with me not looking as copacetic as I thought I was:
I'm still mostly at the honeymoon period with the steroids - not completely flipped out yet, but that will happen soon enough.
Love you all - great to be back!!! I'll post more news when I get it - later this week probably. I'm going to take a nap.
josh: Happy Sunday! Still in ICU but only because no normal room is open. Likely I will get discharged today straight from ICU.
I feel really good, although I'm starting to feel the steroids I have to take because of the surgery. Not my favorite, mainly because they make it impossible to shut up, and when combined with the seizure medication I always have to take, which makes me irritable, not a good combination :). - wish me luck, and hopefully I can improve from last time.
The way I have this blog set up, it's tough to post pictures directly from my phone, which is all I have here. When I get home (today!), I'll get some up.
josh: In ICU but will probably get out today! Found out we can start calling that thing a tumor (boo!). Won't officially know what kind until maybe Tuesday. Doctor didn't seem exciting about the likelihood that it's another kind than GBM (*any* other kind would be better I guess), but I'm keeping my hopes up.