“Two go in, one comes out!”

(some of you might recognize that title line from the awful 80′s movie, “Mad Max: Beyond Thunderdome.” If you’ve arrived at this post by accident, make yourself comfortable and stick around for awhile.  But, be forewarned, there will be no further discussion of any more bad movies)

 

More things I know…

So, Wednesday, I had the chance to meet with my neuro-oncologist down at UW (he also works with SCCA). 

 

Brain update…”Things I know” edition

So, here’s where I’m at, as of Tuesday afternoon:  I know that my tumor has been reclassified (to what, I don’t know, but something more aggressive & active than previously thought).  I know that, by way of changing diagnosis, I’ve been excluded from both trial studies I previously had been invited to.  I know that I’m feeling just fine right now; still regaining strength after the last surgery, and still figuring out what temporary & permanent quirks I’ve developed as a result of that surgery.  And, I know that I’m heading back down to University of Washington tomorrow to meet with my neuro-oncologist to discuss “options.”  (I hate that word; it signifies no certainty that anything will really work) 

 

July 15 Brain Update…slight detour edition

I’ve come to an unfortunate conclusion of late; here, just weeks short of hittin’ the big 3-5, I’ve found that I kinda like having a plan set in stone sometimes.  Not to say I don’t enjoy adventure and the unknown, but (for the big stuff, at least) I feel better having mapped out a general direction, moving forward on that, and making adjustments along the way.

 

Post-4th, Pre-Fireworks Health Update 7-6-10

Hi everyone – I hope you had a great Independence Day weekend (or Canada Day weekend, for my Canuck friends).

Here I am, just over a month out of my 4th brain surgery in 2 years, and just about a week away from starting my 2nd chemo cycle in that same time.  Wow.  Just when you think you know where life is headed…(finish that thought on your own).

Right now, I’m still very much on the mend from the surgery; my overall healing isn’t going as I’d like, but the basic recovery components seem to be running smoothly.  My left side strength and balance are getting back to normal, and I can do most things with my left hand again (still working on typing fast, and on guitar chords, but the rest is getting there).  I’m back to driving again, and don’t have too many limitations there (which is helpful, especially when you’re dating someone who lives almost an hour away, and when you’re tentatively planning a late-summer road trip of several hundred miles).  Otherwise, I’ve been having a range of other little concerns, which are hopefully just that, ranging from pain/discomfort in various areas, to lingering flu-like symptoms for much of the past few weeks.  Thankfully, the docs seem to have ruled out the big stuff (infection, organ failure, stuff like that), but that only makes me mentally feel better.  If you think of it, I’d appreciate some prayer for that junk to clear up, and soon.

Next week, the real fun begins; Wednesday, I’ll be travelling down to UW once again (they really need to get me my own parking space down there) to begin my 2 days, once a month, for 6 months chemo treatments.  As I’ve mentioned before, I have no idea how these will hit me, but I have to prepare for the worst (prepare for the worst, hope & pray for the best: that’s pretty much been my game plan thoughout this whole ride.  Usually, you get somewhere in between).

I’ll keep you posted as best I can around this treatment.  Thanks for your ongoing prayers, support,  & encouragements – they continue to lift me.  As does remembering the wonderful support system God’s placed around me.  May He bring you joy and peace this week, whatever you’re up to.

 

Concerning “Friends”…

What is a friend?

 

Long-Overdue Update – “Back in the Saddle again” edition

Hi everyone -

I’ll keep this one pretty short & businesslike today.  Basically, health-wise, I’m getting better day by day, not nearly as fast as I’d like, but I’ll take it.  From all I can gather, I’m well ahead of the curve for recovery on this kind of thing, and I can’t do much but thank many, many prayers for that.

Some encouraging developments have been: getting more strength in my left hand (had been significantly weakened by surgery on right frontal lobe of brain), to the point where I can button buttons and tie my shoes again (small victories, but victories nonetheless!); plus, after nearly 2 mos of having others drive me around everywhere, I finally got to the point where myself and my docs all felt it was fine for me to be driving again!  I’ve got to admit, it feels pretty darn good to be “back in the saddle again,” and able to do what I want when I want, without having to coordinate schedules with a long list of very well-meaning, but very busy people who had offered to give me rides “anytime.”  Yeah, learning humily is good, but independence is even better; am I right, or am I right?  Plus, it’s been amazing to see all the people that have selflessly brought meals by, something I used to feel awkward about asking for, but now greatly appreciate (both as an energy-saver for me, and a chance to let others feel involved.  Not to mention the amazing food that’s coming my way!)

(A minor discouragement or two: my body’s been fighting off lots of random little bugs & ailments during this recovery time, so I’ve never really felt great (hopefully, just little stuff).  OK, just the one thing; God’s been really good these past couple months…)

Coming up: my docs and I have all decided to go with a trial study for a new form of chemotherapy (a pre-existing drug, now being tested on recurrent anaplastic glioma tumors like mine).  I’m feeling positive that a new option of treatment exists, aside from the one I did the first time (and we all see how well that one took, yes?).  What that means is, starting sometime in August, I’ll be down in Seattle two days a month, once a month, for a six-month treatment cycle; these treatments will be infusion-based (through an IV), and I’m expecting they’ll hit me harder that the previous, pill-based treatments did. 

*Also, I’ll most likely be needing a place to stay in the greater Seattle area overnight b/t these treatments; I’m thinking I won’t be up for couch-crashing (given the state I’ll be in), so if any of you in that general area have a guest bedroom to offer a quiet, occasionally-puking grad-school student for one Friday night a month, all offers will be heard, and all will be greatly appreciated.

I continue to be grateful for all the prayers, encouragement, and support so many of you have passed along during a tough time.

 

Junk Drawer, Post-Brain Surgery Edition (6/15)

Hi, everyone.  Here in my post-surgery, “resting-up” time (which should cover much of June), I’m finding myself a bit stunted for substantial creative thought.  As such, I pass along a Phil update, along with other miscellaneous tidbits that survived the operating table, and have grown into little interesting nuggets of thought:

 

Back at Home!

Hi everyone -

This is a Phil again – a huge round of applause for my amazing big sister Ruth, who, alongside being a homeschooling mom & running down to Seattle two days in a row to watch me groan and lie limp, still did a great job keeping you all up-to-date on my status. 

Well, everyone, after  days in the hospital, followed by 3 days at the house of my just as amazing parents’, I finally get to write to you from my own living room.While I’m still taking a lot of pain meds, and am typing this w/ about 7 working fingers, and am bringing all my other systems “back online,” so to speak, I’m prgressing nicely in my recovery for what  (despite having become somewhat routine for me) was a pretty major surgery.  There’s really no timeline for these kinds of things, but more benchmarks along the way; I’m hitting some nicely (like living independently, and being able to give a thumbs-up with my gimpy hand), and can look forward to others in the near future (like driving, typing fast, and playing guitar).

As for next steps, the word yesterday from UW is that my tumor type was the same as before (anything else would have been bad news, so this was good to hear), and some follow-up chemo options are being discussed at this time.  Nothing very soon, though,. 

Now, I look forward to regaining normal sleep patterns, watching how England does in the World Cup, and getting to touch base w/ many of you to thank you personally for all you love, prayers, support, and encouragement.

 

Phil’s on the move

Just a quick update to let everyone know that Phil was able to leave UW Medical Center and go to our parent’s house  today.  He’ll be relaxing and recovering there for at least a few days.  Knowing Phil, he’ll be asking for his computer back pretty soon, so the next update will probably be from him.  Take care everyone, and thanks again for your prayers.

Ruth