I had mentioned having a brain MRI scan today to monitor the success of this latest chemo; for those wanting to know how today’s scan went, you’ll need to ask someone who actually had a scan done today (that person was not me – big fat scheduling mixup – my appt date was changed for very good & legit reasons, someone finally noticed that this scheduled scan was too close to the last one (something I had noticed but assumed my team had decided was OK to cheat on (which we’ve done in the past). Lots of running to this clinic, then to this clinic with confused looks at each stop; followed by, “we don’t have you on the schedule today…”I could see things going downhill very fast (more…)

(see health update on last post below – next one coming by Thanksgiving, with my next scan coming the day before)

A few weeks ago while on what has become my every other week trip to the local Trader Joe’s grocery; (In the interest of story brevity; I’m just going to assume you know what Trader Joe’s is (if not, here you go).

I was simultaneously impressed, amused, and annoyed by a Wed. eve. run to Trader Joes…as I knew it would be really busy (and knowing I’m not steady enough on my feet for lots of spacey distracted shoppers); I opted for the motorized cart – which stopped being a fun alternative after about the 2nd time.
After the mgr went way out of his way to get an immobilized cart running for me – then track me down to let me know so….

When people see the cart & the cane, their helpful natures come out; everytime I looked perplexed or like I was efforting to do something, I had someone stepping up to offer assistance – they just didn’t understand that I always look like that (I’d thank them for their concern, and let them know that I was in control of the situation, unless it involved making a decision or fighting my way to the samples counter). Very sweet, genuinely kind people…some might be offended by offers of help, so good on them for just putting it out there (cuz sometimes people just don’t feel like asking for help when they need it)

But, for all the verbal helpfulness, the masses still made my shopping experience a difficult one by stumbling around like it was the first time they’d been to a grocery store before; thankfully, I know how to anticipate others’ unpredictable movements, which usually means I pause before a blind corner; annoying all behind me, until they’d see some very distracted, rushed person flying around said corner w/ their head down. Or stumbling around in front of displays, which I can also predict & pause my path so as to avoid the eventual collision. Annoying those same fellow shoppers, who didn’t understand the idea of looking several steps to avoid catastrophic results (true visionaries are never appreciated in their time)

As my body becomes more and more unsteady, or at least doesn’t improve; I’ve found myself taking the occasional fall (nothing too serious, just seriously embarrasing). I’m having to face the prospect of a life (however long it would be) of significantly diminished physical abilities.

Perhaps my takeaway from this whole story was an interesting study in good intentions(in the vein of “let me know what I can do to help“); perhaps it was more a reflection of my own selfishness (having come to both anticipate & expect a certain response to the visually obvious disabilities I’m sporting these days…perhaps I just needed to put something up here again, and this story was as good as any( they can’t all be prize winners)

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.

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I just came to my attention that I haven’t posted anything new on here in almost a month…moving and a flurry of appts will do that; I apologize if you’ve checked in here hoping to find something, it means a lot that that people would do so, I really try to honor that. (more…)

It has occurred to me lately that even should I ever walk away from this current health ordeal of mine; I should never expect to return to what could be considered 100% of physical form (there’s just been too much damage done to the wiring up there). As such, I’m setting some realistic expectations for the rest of my life (in delusionally optimistic anticipation of a long one: which includes, among other things taking my solo Italy trip off the bucket list (as well as all other solo travel). In the shorter term this has involved needing to let others make decisions regarding my future independence abilities (tough to stomach when I’m doing just fine, and perhaps well above expectations right now. However it still stinks to watch friends & family living their lives, hiking hikes, running races, traveling on trips, even just driving around (which I have no guarantee of being able to do again anytime soon), all at 100%.

This past week my church looked at Ps.63 where David longs for water in the midst of his desert; the speaker (a good friend who teaches education students) made a point about walking w/ others in their deserts, and called me out by name (the one week where I wasn’t feeling up to making it in – I wasn’t there, but listened online later) as someone who has a unique desert experience that always leaves him laughing when he encounters me in it – I’ve had others share similar sentiments, and take that as one of the greatest compliments I could get; being able to uplift in the midst of a struggle…

But just the same I was reminded recently that while I haven’t been 100%  at any time in the past 3 yrs, the diminished percent (let’s say 70% I’ve been at has been  a greater 70% than if I had remained at that previous 100%, and that, if I could, I wouldn’t trade the two.  Having seen what I’ve seen in God’s guiding hand, in my support system, and in myself, I have little choice but to remain thankful for not being 100% (“…for my strength is made perfect in  weakness (I Cor 12:9).”), or become miserable and ungrateful for the 70% – thus robbing me of whatever time I’ve got left here. As sick as it sounds, cancer has significantly improved my life in many ways.

This past Monday found me once again lying inside the familiar confines of the MRI tube at UWMC to determine the effectiveness or not of my latest, and perhaps most debated chemo regiment.  (discussed at great length previously).  Understandably, I had high hopes, but low expectations for this latest scan (high hopes, in that I haven’t had so much as neutral news since last summer; low expectations, for the same reason; they just all blend together at a certain point, my local docs and I almost want to say to each other, when reviewing the UW results, “why are we even sitting here? We already know”).

So, when the latest image came up on the screen, showing my tumor to still be spreading despite several chemo treatments, I wasn’t real surprised, but was plenty disappointed.  I was really hoping this one (as much if not more than others before it) was going to at least slow the momentum, which it may have done, it’d be near impossible to gauge rate of growth with any accuracy.  It really deflated me more than others in recent memory have…

Now, we move on to the next one (which I’ll give a shot, seeing how well I tolerated this last one, after this, though, I really don’t see chemo as my best primary option any more).  As my doc stated, the goal now is to keep me independent for as long as possible; not the kind of language an otherwise healthy, fully independent, & mentally sharp young guy wants to hear. I’ll share more when there’s more to share (not anytime real soon)

How I’m feeling “Right Now” has rarely served me well in life. (more…)