Health Update
I’ll discuss my overall state in this writing piece, but of immediate significance was my recent MRI scan which showed no new significant tumor progression (read:current infusion of the $10,000/bag stuff + chemo; looks like it’s at least keeping things from getting worse, which is about the best we can realistically hope for after the aggression this tumor’s been showing).
Next up is just staying the course on treatments, continuing to back off the steroid that reduces swelling inside my head, but increase it on the outside (it’s ok if you’ve seen me in recent months and noted how chubby my face was getting). My next scan is the day before Thanksgiving.
And again, if you don’t see updates on here, that generally means there’s nothing new to report, or that I don’t have the ability to do regular writing.
Of Instability& Declining Ability
I’m not going to lie; it’s been a rough couple of months. You’re not seeing many new updates here in part to my prolonged nomad status in which I’m still periodically digging through a storage unit for items like my digital pen (the one that allows me to convert handwriting to digital type), and has me living in a general state of instability (not a good place for me). While frustrating to not have the stability that comes with a consistent place to live and knowing where all your stuff is, it has been a real blessing having the love and hospitality shown to me that I have (my Gift of Take has been well exercised of late as has my pride swallowing since I want nothing more than to be fully independent and not be taken care of). So that’s how instability has done a number on me and has thrown a huge roadblock in my writing routine.
Over the past month or two, I’ve definitely observed a sharp drop-off in my left side strength, which particularly manifests itself in my walking (which happens exclusively with a cane these days what with my being pretty tipsy).
The chemo treatments I’ve been taking for the past few months (a daily pill of Etoposide, which I’ve tolerated quite well, something I attribute in part to my weekly acupuncture treatments and to the many, many prayers being sent out on my behalf, have left me pretty wiped out much of the time. I tell people that every day feels like I just took a long hike the day before (but without the benefits of enjoying nature and of several hours of exercise).
Are you having any pain (one of the side effects of rapid advancing glioblastoma)? I hear every time I go for a doctor checkup. I tell them the same thing; the only real pain I experience is the pain in the neck it is to not be able to tie my shoes and the 5 min it takes to put on a pair of pants, not to mention the round of phone calls required for the simplest errands.
In particular, my walking and balance have decreased significantly of late. I’m quite wobbly and am a significant fall risk any time I’m mobile, even with a cane. My best falling story came at a local dairy while buying ice cream cones with a friend. I got a double scoop and polished off about half by the time I got to the exit. When I walk these days my left foot drags along the ground throwing my balance off, and increasing the likelihood of tripping on things like rugs and flat ground and gravel (like at the park the other day). So on my way out of the dairy dragging my foot along like a sack of wet laundry, and having left my cane in the car because I was feeling fairly cocky that day, I stumbled on a no trip rug; then tried to soccer kick it back into place (severely overestimating my abilities) causing me to list to the side and eventually go down. Thankfully I had plenty of time to throw my cone to the ground and brace myself for a rough landing, causing minimal harm to myself (some scrapes and bruises and lots of embarrassment), plus putting a huge scare into everyone in the place,including the store manager, who saw my destroyed pumpkin and raspberry cheesecake waffle cone and immediately ordered up a replacement cone (despite my having already polished off half the cone). That, my friends, is one magical grift scam; I suggested to my friend that we go score half ice cream cones all over town in exchange for a few bruises. We then determined that the ethics of that plan were questionable at best. I’ve since decided that half an ice cream cone isn’t worth the risk of seriously hurting myself; a reality I face every time I leave the chair or couch. My ability to not fall has significantly declined more and more; people who haven’t seen me for a while are in for quite a shock when they might expect to see the same active (vibrant?) young man I still think I am. Much as they expect my intellect to be shot, and not (essentially) intact as it is. I feel bad that they have to see me go through this, but, as I was reminded by a good friend recently, feeling that way is just another way of beating myself up (something I do quite well now that others aren’t expecting much out of me).
