something real

One often criticized aspect of social media is the unrealistic one-sidedness of it. Do you tire the superficiality?

Is he being honest here? What about that aspect of life that everyone in your life has witnessed as a major challenge? What did she learn from that awful, or “misinformed,” decision?

Nobody wants to air dirty laundry any more than it already is in this day and age. But to scroll and read an instance when a friend, or even a “friend,” comes forward with a bit of courage in a comment of genuine, awkward, tragic and beautiful originality, it captures my attention and grace! Not that I want to read those inappropriate public airing of personal grievances, to see you struggle, or be entertained by your failure. I do love seeing all the original pics and comments of your small and large victories as well!

I suppose…either way, I just need something real. That’s what brings me back to it, and sometimes does seem relatively rare. Because everything is awesome in social media world.

Stepped in mud, got new brown shoes
It’s awesome to win and it’s awesome to lose…Everything is awesome!

-Lego Movie

Am I any less guilty? I try to be honest and have some courage here and elsewhere. Is it discouraging to feel a deep pressure under your right ribs every time that you roll over in bed; to lay there in the dark thinking about the reality of tumors obviously still present? How difficult is it NOT to dwell on that bit of recent history, where a break between invasive treatments resulted in fast and quite problematic disease progression? Not knowing if there will be a different result next time; that alone is enough to keep you awake if you don’t steer those thoughts downstream.

Is it a nuisance, and almost embarrassing, to feel like ice every time the temperature dips below 40 degrees (not truly all that cold), and constantly want to retreat to an electric blanket? Do I really want to complain of being cold, about easily cracked hands and my numb feet (again), which I haven’t felt since last February, especially in light of the alternative of no effective treatment? I do sometimes quite literally stumble in the dark.

Does it get hard to be a man and provider for a family yet constantly accept so much charity and generosity that I should simply be thankful for? When you still get fatigued like Grandpa Simpson and desperately wish to sleep or at least sit down every few hours?

I could go on. Ugh. I’d much rather, and it is indeed more fruitful, to dwell on and report the victories and progress. Thankfully, there is plenty of that going on as well! I’m aware of and absolutely feel the concern and prayers. All the support absolutely helps me to endure the grind, not to mention a rock solid, genuinely caring oncology team at UPMC Camp Hill.

I have intentionally picked up in the social medial realm, often writing physical therapy content (seen under Bonny Lane Club) and random thoughts. That’s often all I have the energy to do to entertain myself or otherwise remain occupied. After all, this social media business is primarily -supposed- to be about connectedness and entertainment? I’m not one to be bored ; ) Topics unrelated to my health condition, as well as original content related to my profession are good for me, though obviously not revealing the nature of what I’m dealing with that day.

I have gained a far better appreciation of the fact that having time and a state of mind and being somewhat forced to sit and read and think for a time is a privilege. Sure, I still watch too many televised sports and semi historical series and documentaries. But while my body continues to slowly heal, my eyes are wide open and searching deep places.

I look forward to continued physical improvement, returning to work and improved capacity for more active endeavors with the family, around the house, and otherwise. But too much has it’s limits, of course. When I recover even further (Lord willing), I will have left some things behind and have kept other things that mattered. I hope this may be true of all of us, having to deal with the current pandemic. I know that we all have realities; the challenges and grief that life eventually brings.

I have always loved the Thanksgiving Holiday. Friend, I’m thankful for you, even in the highly limited social media capacity, with little actual time together, and personal interaction is unrealistic. Thank you for taking the time to read these. I hope they have been real to you. And I do hope this will be true for you as well.

The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass and whatever lies before me
10,000 reasons for my heart to find
. [gratitude]

-Jesus Culture

Seeing it

Yesterdays blood draw showed substantial improvement. I remain quite anemic (and therefore very easily cold and fatigued), but the remainder of my blood levels are at or near normal values! No more salt pills or water restriction (which I was beginning to fail at anyway). It will be much easier to eat normally and hopefully abundantly to regain some strength.

The progress has been so slow, and there are absolutely daily challenges, but I actually FEEL like I’m climbing out of zombie land. I’m so thankful, praising God for this immunotherapy combo that seems to be “working.” Much credit due to the team of local oncology docs, as well as some in-the-know professional friends who really helped me through the recent valley. Absolute credit to Merck. But are you hearing this? OUR PRAYERS ARE BEING ANSWERED! Seriously – praise unto God!

Still, I’m reserved to say or feel too much. I’m shocked and it’s truly difficult for me to believe that any treatment can be this effective with only relatively minor side effects (so far), and without leaving me throwing up and in a heap for four days. I suspect there may be more valleys to come. I continue to pray and hope for the best, and I hope you will continue as well. For now, it just feels good to be on my way out of a pretty deep valley.

– – – – thoughts – – – –

Yesterday one of the kids saw me leaning on a sycamore tree struggling to breath after carrying an armload of random leaves and brush to the side of the yard. “You really don’t deserve this, dad. Life is just rough sometimes.” I caught my breath and said something to the effect of “Thanks. Yeah it’s rough.”

You may expect that this was followed with some semi-noble words wrapped up in a Bible verse and further clarified in a life lesson. Nope. That was the life lesson. We are living it daily. Rough. And again, while I would wish what we are going through on nobody, we are all undoubtedly growing from it in ways…important and previously unforeseen (to me).

The roughness of life is an undeniable fact. But that’s “On one hand.” On the other hand lies all the beauty and goodness and highly complex systems operating as intended. Your very own cerebellum may have quietly been doing it’s job of smoothing out and fine-tuning the coordination of every single voluntary movement that you have made FOR DECADES, with little to no acknowledgment.

Of course I have seen the explanations for how all of this has arisen from random interaction between simple systems. But to me they sound rather flimsy. (I promised myself not to get into the “origins debate.” But just for the record I’m a huge fan of physician-geneticist Frances Collins who writes and references others extensively from the standpoint of evolution being a nearly unfathomable process for life to have the ability to adapt and adjust to inevitable major and minor changes in the environment. I will not argue with anyone about the extent to which this occurs. But I -think- that evolution is a good and even God-given means for life and systems of life to…persist!

Life is good and actually strange and quite amazing. For example, how do I explain my own 44 years of good health and physical abilities and people and adventures far too numerous to count? What do we do now, just forget all that?? At this point, I have a major glitch in the system, and am slowly trying to break free of it and all the sitting in the living room. I feel content with what I had been doing with life prior to this. I always thought that my job as a physical therapist and sports performance trainer was far more than “lets do 3 sets of 6” or whatever in terms of diagnosis and exercise prescription. Apparently it was.

“Those who seek good find the goodwill of others. and those who look for evil are sure to find it.”

-Principles for life laid out in Proverbs sure seem to ring true.

I loved my work but was far from committing it all to a professional life. That causes some friction, but I have always simply been too hungry for other pursuits. Adventures! And we were happy to live with the consequences. Of course I mostly took my health for granted. In a relatively healthy state, it’s nearly impossible not to.

You who are functioning mostly “as intended,” I urge you to have gratitude DAILY. Reflect on your cerebellum if you need to ; ). Those who are…not so healthy or struggling, what I have found that helps me the most is…the absolute same thing. Look for the people, places and things to be thankful for. You have probably heard this before, but it’s true! Sometimes it’s not easy. Ask God for a daily measure of grace and resilience. Seek the hand that holds beauty and goodness, peace and capability.

Life is rough. Life is real, and good.

About that valley

I think that an update here is far overdue. I’m sorry for not keeping up with this, but over the last ~6 weeks I’ve had little energy or motivation to say much. It has been a major challenge just to keep up with the basics of life.When I got out of the hospital (previous post), I desperately needed and wanted to get some strength and vitality back. I was run down, deconditioned, and generally fragile from the adverse reaction to the chemo protocol that landed me there.

However, being on water / liquid restriction made it very difficult to eat enough to gain much back. The cancer on my adrenal glands had left me with electrolyte imbalance that could have serious implications for my hearts ability to function. So yes, I had to take the liquid restriction seriously. Have you ever tried to down a chicken parm or a subway with little to drink? Meats / proteins start to feel like mulch in your mouth and breads like eating a giant sponge. Soups and protein shakes would be wonderful, but remember, …fluid restriction.

So there was that. Then, the pain in my hips, thighs and pelvis went from bad to excruciating. Brutal. There was no respite; no position or activity or even medicine that would allow me to get some rest. [Yes, this was apparently from bone metastasis returning with a vengeance]. Just in July I was squatting and deadlifting moderate loads with ease and no pain at all. To try even a minute fraction of that (of course I did) would have me paying for it for 12 hours. The meds…A small to moderate dose of some pretty heavy prescription drugs did nothing for me. So we bumped up the dose “to try to get ahead of the pain.” That finally provided some relief. The problem now was that I could barely stay awake to take care of myself, eat, you know… basic activities of daily living. I could literally barely make it to the bathroom from our living room couch due to stiff hips and fatigue. My brief text message responses to friends and family were cut-off, incoherent, and probably quite hilarious given a different context.

It probably wasn’t truly too long of a wait, but it seemed like it. Radiation day! I do not understand how this stuff works, but I laid on the table of Dr. Barron, radiation oncologist, for 30 minutes of various careful (apparently precision) measurements and approximately 45 minutes of “treatment.” A huge high tech looking machine slowly sweeps over you at various angles. You think that you may possibly come out in the future or Jurassic period. The machine moves about like some kind of reiki or something. You see nothing. You feel nothing. Nothing at all.

What kind of placebo is this??I remain completely and utterly shocked that his huge placebo machine completely took the pain away. With one…ONE single treatment?? And my hips which would not straighten out SUDDENLY have full range of motion again??? Serious miracle of miracles, praise God! And thank God for Dr. Barron.

That led to a fiasco of tapering off the heavy meds. No, you don’t go off them as you went on them, I found the hard way. Another 3 or 5 days of near comatose state sleeping all day, but feeling downright miserable from plain old withdrawal. A much more graduated approach advised by the oncologist did the trick. But ugh…

At this point, as you could imagine, my body was weaker than ever. I had not received any -effective- treatment since early July, and now it was early October, and all the above plus an aggressive cancer stealing my body’s resources… The simplest activities were major efforts. I don’t even want to say how low my weight dipped, but I was literally in tears wondering how we are going to “turn the ship around.”And…I missed the far majority of my kids fall soccer season, which of course I love. Sitting in on the chair or couch watching football and soccer on TV constantly, fighting the cold, too frail to journey out much…more tears.

Around 3 weeks ago I began a protocol of two immunotherapy drugs that are supposed to specifically target the cell surface markers of my cancer. I have not yet had a follow-up scan, and it’s early to say, but so far, it seems to be working. There are a number of small but favorable changes in my blood work, including electrolyte levels that would indicate the adrenals and kidneys are better regulating those areas. I’m able to drink (and therefore eat) more and I drive limited distances and I’m completely tapered off all pain meds. My energy levels are up slightly, but I do not know how much to expect this to improve.

Side effects of these immunotherapy drugs are not nearly as harsh as chemotherapy. But fatigue, various skin problems, and shortness of breath are some of the minor side effects that you just suck it up and live with. It is an odd thing to have the form of someone malnourished in the 3rd world and yet feel short of breath (like morbid obesity) and need to stop and breath when you walk up the stairs. So for now, I move slow, yet trying to regain some strength and simply fight off the cold (With such low weight and certain blood levels, I’m always cold). Hey, I’m writing an update here, so that says something in itself!

I would like to comment on how being at such a low point, and just now barely climbing out of it, changes you…more than just mentally. But this is long enough, so perhaps another time. For now I’ll just say that you REALLY reach out for God, and have a different understanding. I would not wish this on anyone, but there are legit and real…benefits? Is it just desperation? It does not matter. In the end, The Lord is really all there is.

Thank you for the continued prayers and meals and various ways of support too numerous to mention. You have blessed Amy and I greatly.