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.

Hurdles

Much has taken place since the previous update.

At that point we were in between trying to get in some end of summer family activities, and tests and procedures to determine whether or not I would qualify to begin a clinical trial of immunotherapy at Johns Hopkins. This included a formal interview and brief exam, an updated CT scan, further bloodwork, biopsy, and a few other less invasive tests. Amy and I were so grateful and excited that I did qualify! That lasted for 12 hours or so. There was one important hang-up.

During the interview I did report the general pain through my back and hips and upper legs that was always keeping me from resting. It was never a sharp pain, fairly equal on both sides. The issue did not improve or worsen when trying different movements or resting positions, and did not at all seem to depend on how active or inactive I had been the previous day. Standard pain meds offered little relief. I thought these long days and longer nights may be the process of my red and white blood cells significantly rejuvenating, or the small nerve endings returning after the previous chemo protocol (my feet have been numb since February).

The doctor called the next day to say what I thought was going on but did not want to acknowledge. [Paraphrase] “Your CT scan from yesterday showed some growth of the central tumor sites, which is somewhat to be expected since you have been nearly a month off chemo. But what you are describing in terms of pain is the definition of bone cancer pain. These areas on the CT scan that previously looked stable still do appear the same, so they haven’t yet progressed to a large extent. But the pain is very likely to worsen, and I really don’t want that to get out of hand.”

Since immunotherapy typically takes ~4 weeks to “kick in” and tumor sites generally will show some growth before any recession in the right direction, the doctor recommended to put that on hold in favor of starting a second-line chemotherapy protocol. Chemo is less of a long-term solution but if it works, the response comes far faster.

My gut reaction to her recommendation was frustration. I wanted to take back what I said about the pain and tell her “It’s really not that bad, I’m good to proceed as planned.” But then it occurred to me that she spends her life dealing with such things and probably knows better. Nearly a week of time between that conversation and starting the new chemo protocol absolutely proved it. The pain worsened, sometimes drastically, usually any time that I attempted to rest. Heavy hitter pain meds were called in. I didn’t like the whole idea of that, so I took them sparingly, in response to the pain.

By the time this type of pain is experienced, it’s too late. I was told that you need to take them consistently in order to stay ahead of it. So I did, as prescribed. It helped to some extent. The first day of chemo rolled in and we were hoping and praying that my body would respond to this drug combo. I questioned how I would tolerate sitting in the chair for a few hours without squirming and generally being miserable.

The response was drastic and fairly immediate, praise God! I went home and slept peacefully for the first time in close to a month. I rested and actually moved very little, like back in February. I’m not sure if the degree of fatigue and brain fog was a typical side effect from this chemo cocktail (I’ve heard and read that it is), if it is the fallout from not having slept well for so long, from not properly tapering off the heavier painkillers, or (likely) some combination of all these factors. But I can absolutely say that I had felt far less (mentally) sharp than ever. It was like being a different person. I now feel like day-by-day, my previous brain is being uncovered, but things seem fragile and shaky. I was somewhat afraid to even sit here to try writing anything.

The previous post commented on looking forward to some gains while being off chemo, and a new phase of this journey. This is certainly not what I had in mind. I’ve lost some weight and strength and endurance (reverse gainz ; )). I again feel stiff from sitting and such lack of activity. Sometimes I simply feel bored but absolutely lack physical and mental endurance or desire to do much. Even reading is an effort and so I’ll half watch the news or random ball games to serve as a distraction. Please do not feel bad if I don’t feel like talking or social media type responding much at this time.

Sometimes in my mind, all this is a direct indicator of things headed downhill, with constant discomfort and no pathway out of it. Pain and fatigue make cowards of us all. In reality, this setback was just a hurdle that popped up on the road to some further recovery. And I’ve lept plenty of those in my life, including every “Plyo Friday” for the past 15 years.

Even as I type this, I have no pain and I’m coming off a least a few hours of decent sleep. Amy and I have been personally advised by more than a few cancer survivors as well as others currently in the trenches, that we should expect this. Depending on how I respond to the chemo, we will revisit the immunotherapy trial (or one like it) after a few cycles. As I feel physically better, and the mental haze gradually lifts, I see the progress and hope.

Thank you for the continued prayers and support and time to read this. It truly is meaningful, even if we’re not responding much at the moment.

somewhere in the middle

This is a bit overdue as we have been between calls and on-line appointments with doctors, case managers and insurance. At this point, three weeks have fallen between knowing the result of the recent months of treatment and having any sort of next step forward. It has been a lot of waiting to hear who spoke to whom and What We Are Going to Do.

Plus, we definitely need time to process, to say the least.

Despite this, the family and I got away for a few days. It was a fun break, but more than the usual degree of tiresome. This was a pleasant and relaxing pause, if you don’t count all that weighs heavily on the mind. It was a blessing to have some exclusive family time. It was a sobering reminder that wherever I go, there I still am. I remain thankful that we could squeeze it in under these circumstances. It was a first opportunity to travel with less resiliency such as every few hours of don’tforgetyourmedicine  and youguysgoaheadi’llstayhereandrest.

A post from a few months ago commented on the previous scan. It showed excellent progress in all areas, and was a great indication that the first line chemotherapy drugs were doing what we we hoped they would do. With plenty of ways to go, and that fact that I was not too run down from side effects, the plan was to stay the course to get as much mileage out of that protocol as possible. Where patients in similar situations receive and tolerate four to six cycle of this treatment, I completed a total of eight cycles in just over six months. Ten weeks had passed between the previous and most recent CT scans.

This scan showed news somewhere between the good and the bad. While the peripheral cancer sites continued to respond well, and are gone or further diminished, the primary site has shown a mild but definite increase. I have been reminded that the first-line chemo has served its purposes. The no-so-great part, I’m told, is typical. The mileage runs out. We attack from new angles. That could mean a new chemotherapy mix or starting a cutting-edge but still experimental clinical trial. Either option is reasonable, but there are no proven and established clinical pathways for my specific cell surface markers. Dr. Azad, the specialized oncologist at Johns Hopkins, says that we have good reason to think that the protocol in her study is the best next step forward. I -should- respond. I want to hear more from her and the team, but that’s all they’re able to give at the moment. And I believe them. I appreciate the straight far more than sugar coating or flimsy promises.

The clinical trail includes immunotherapy to stimulate the autoimmune system plus an epigenetic drug that targets specific cell surface markers. It requires a one month wash-out period from chemo. I’m the very last patient enrolled of 15 total at JH and 60 at the University of Southern California. Next week I will travel to Hopkins to begin pre-tests that will determine final eligibility to begin the study. If accepted, I’ll be wearing a path down route 83 before the end of this month.

Physically, I’m currently having zero nausea but the numb feet and ringing ears remain. Fatigue and flatness comes in waves. Mentally, I’m mostly well. Sometimes I honestly do not know what to think. Every night brings restless light sleep despite trying various meds. Every morning is a new reminder of the situation, a time to pray and with help from the Lord, get it somewhat together. The outcome of all this is definitely more than a matter of patience or toughness, grinding through side effects, getting by with (more than a little) help from family and friends. It’s not that “easy.” Despite what many of us like to think, there’s much in life that is truly NOT a matter of effort or anything we can control. But this situation really makes it clear; presses it upon you.

Soli Deo gloria.

My strength and energy and ability have continued to slowly improve. I have deadlifted 315 for a few sets of 5 reps without really pushing it (if that means anything to you). During a recent on-line conversation, I had a question for Dr. Azad, renowned specialist on the forefront of rare cancer research and personalized drug development.

“So I continue to receive and simply come across various advice. At this point, between treatments, I wanted to double check if there is anything that I should be doing or avoiding, nutritionally or otherwise?”

“Keep trying to build back strength while you’re not nauseous. Get a lot of protein. But calories are most important for patients in your situation. Seriously, focus on the gains.”

Okay. That may have been a bit of a paraphrase of the docs actual words ; ). But truly, this is the gist of her message. So with prayer and a medical/research team and the support from so many of you, we’ll move ahead in this time somewhere between treatments. I will continue to focus on the daily work ahead of me, and where and when I can, also the gains.

 

Taking Our Greys for Granted

 

“Well I don’t know

but I’ve been told

to never slow down

never grow old.”

Well I don’t know, either. It’s one thing for teen and twentysomething pop music stars to make confident claims about staying young. But it always appealed to me that Tom Petty, at his age in his shoes with talents and fame and fortune, had dared to question the ridiculous idea. And I’m certain that the legitimate strength and joys of youth, and the wisdom and understanding of age, have been deliberated for quite some time..

“Is not wisdom found in abundance among the aged? Does not long life bring understanding?”   

-Job 12 [written ~8000 (!) years ago.]

Before dealing with this diagnosis, I viewed aging as we see and hear all around us. It’s one of the leading inevitable bummers; something to tolerate because you have no choice.

“50 is the new 40.”

“How to fight wrinkles…”

“Do this to turn back the clock on…”

I did plenty of time considering my own mortality, thinking about what it means to gracefully accept the realities of aging, and living with a mindset of gratitude over fear. Yes, tomorrow is a gift. I accepted that while we should constantly take measures to live well, do our tic checks, brush and floss our teeth, use our seatbelts in cars and now masks in crowded indoor environments, much of it is out of our control. But the actual ability to grow old? I definitely took that for granted. I largely missed the substantial space between tomorrow and eternity. I had professional and personal goals, but never truly dealt with the possibility of missing all the joys of the next 5, 10, 20 years.

My new 5- and 10- year plan is to…be here.

But now, having been through the ringer and…enlightened over the last 6 months, I’m often trying not to think about things that were previously not given an ounce of mental energy. Even five years seems like the gift that it is. My heart swells at the idea of getting grey hair. The routine procedures and exams, even the dreaded colonoscopy… Yeah, sure. Cake-walk. Rather than bemoaning and grudgingly accepting the fine points of decline in physical abilities, I realize that deadlifting a fraction of what I use to, with some like minded brothers, is in fact minimal loss and quadruple blessing. The idea of walking grandchildren around the pond and shuffling down the road for a walk with my bride is bliss.

My official diagnosis is Cholangiocarcinoma. Please do look it up if you’re curious. But remember that you and I probably bring quite limited perspective into our google searches and readings in this realm, with partial understanding at best. And here we may easily get into some quickly outdated info. Still, it does not take an advanced science degree to understand that stage 4 of this particular type is rough through the short- mid-, and long-term. Many people who respond poorly to the first line treatment that I’m currently on (and responding well to so far) are given months and weeks, not years.

Some folks don’t mention the “c” word or name their diagnosis because they hope to deny the disease even an inch of leverage in their mind and body. I considered that for a long time, and still respect that position. But now I officially declare not to give a damn. This is the reality that I and my family (and friends and medical team) are dealing with. It may take me 20 or 40 minutes each morning to deal; get my head together and reacclimate to the situation that I’m “suddenly” in. But cancer has no power over my spirit.

Growing older does pose legitimate challenges for everyone. We all have hopes and dreams and fears for the future. Almost everyone can look back and see various ways they took their youth for granted. “I wish I knew then what I know now.” Well, I’m urging you “then,” to be thankful for the opportunity to age. Don’t take your greys for granted.

Reserved (+.15)

Receiving a diagnosis of stage IV cancer is miserable. The process of continually learning more about it, dealing with it as your body and response change forward and backward and inside out, grieving the great losses and (hopefully) celebrating the small victories. It’s not easy to “trust the process.”

The short term is mostly a daily prayer and grind to keep your head up. You become somewhat accustom to the constant side effects, small and large irritations that I’ve complained about here plenty. It can be the oppressive fatigue and nausea described in the previous post. But it’s also the small benign observations made with nothing but pure intentions. People want to see and hear from you, and truly mean well. And yet, comments like “It’s good that he’s eating” and “You look good…” are a few things that I never heard (or you expect to hear) as a healthy adult male. But now…

The middle term is uncertain and nerve-racking. Now I understand the existence times where there is no clear game plan, and discussing every possibility truly is a fruitless endeavor. “We’ll see when we get there” is never a satisfying answer. It’s certainly not the modern American way that most of us have grown accustom to.

The long term is still honestly frightening. We pray, appreciate prayer and seek it for all phases, but especially this one. Planning your own funeral and associated events at the age of 43 is awkward and the exact opposite of good times. But simply, there are situations when you would be remiss NOT to learn what you have never thought about. Far better to have an action plan rather than a crisis plan. I’m not ready to say much more about that here. May never be.

Yes, I’m thankful for having a top-notch medical team and the great progress achieved thus far, given the circumstances. I’m thankful for this week off chemotherapy, as most of my senses and some of my sensibilities noticeably head in the direction of normal. I’m grateful, with all the feels, for the many friends and family praying for and tangibly supporting the family and I. And even the readers who appreciate or learn from any of this. For years I would joke with my rehab and training clients regarding the **Hawthorne Effect. I’ve seen it too long to deny that having an audience in the weight room or on the training field truly does improve performance.

“What?? You were able to do that much…and with no audience? You know, everything is 15% easier when you have an audience!”

It does not matter when the significant challenge is thrust upon you (like a significant diagnosis), or self-imposed (like sport competition and training), it ALWAYS helps to feel like someone is there, noticing, caring. It was never hard for me to truly care about my friends and clients victories and defeats. And so many have left me no doubt that it’s real. It’s not just a feeling.

At this point, I see how such genuine caring is the worst but also the best of it.

A doctor that doesn’t really care for the patient personally is indeed actually able do a great job of treating them. It’s the lazy, the hyper distracted, and the amoral ones who do not. But when a doctor begins to really care and get invested in a person, it costs THEM greatly. I’m not sure that any single medical professional can possibly truly care for every single one of their clients. They may be good, but they “ain’t” Jesus. Still, I think some, many, do really invest in patients.

Most children and men care about certain things. They express this caring with doing. So many guys, genuine friends, have prayed for me and offered to do things. “If you need anything at all, just please let me know.” This caring is real. I take them at their word, and count them as true friends. They have already tangibly done for the family and I more than imagined. My own father cares for me. I’ve witnessed him grieve a few things over the years. But I think he grieves for me the worst. He and I talk mostly about normal life and deal with the grief by busying ourselves, as most men do. Because it really helps. Treating me as a normal son, and having concern for my interests is how he truly helps me.

My father loves me. This diagnosis is hard on him. But I don’t think he bears the worst of it. It’s the mothers who really grieve. The moms also offer much tangible help, and do plenty. But there are a handful of moms out there who care about me and bear the heaviness. I do not claim to understand this. But it is a birthright of mothers and both their greatest strength and greatest weakness. At some point, without exception, every actual child at some point takes advantage of their mom, or at least fails to appreciate their intensity of care. But nearly always, it is mom who the offspring (rightly) remembers, cherishes, defends, and honors for their truly unconditional love and supernatural self sacrifice.

“Thanks mom.”

Grandma Margaret holds her great grandson, Luke Robert, 2003
Christmas Sweaters! Grandma Margaret hold her great grandson, Luke Robert, 2003

I love and appreciate the truly mom-like caring. I have (hopefully) treated these moms and their families well over the years. And I quite literally hate how the suffering of someone they care about; my suffering, effects them. It’s nobody’s fault, but it sucks, at least to the third power. But that’s not the worst of it. Nearly the worst of it has been reserved for my own mother. The mother of the one effected has zero moments of carrying on with life as usual. It always looms large and impenetrable. Their lives still hold true joy, with thankfulness. But nothing; not a single life experience remains untainted. Other than that, it’s unnecessary…I should not put too many words into her mouth.

“Thanks and appreciate you mom.”

“Sorry.”

“Lets keep living this?”

“Ugh.”

Nothing that can be said is right or enough to fully express the sentiment. It’s a limitation of my vocabular, or possibly of language itself. And I have to leave it at that.

But that’s not the worst of it. That’s reserved for the one single person who loves the most; does the most. We have been told that it would be this way; that the entire process is the worst for the spouse. My greatest gift and one true love…ever. Amy is a paradox is many ways, like quite social yet private. So that’s all I’m willing to say here.

Thank you all for reading. And caring.

The Hawthorne effect right here is 15% at the least! Let’s hope and pray that it applies to the inside of the body too!

——

**The Hawthorne effect (also referred to as the observer effect[1][2]) is a type of reactivity in which individuals modify an aspect of their behavior in response to their awareness of being observed.[3][4] The original research at the Hawthorne Works for telephone equipment in CiceroIllinois, on lighting changes and work structure changes such as working hours and break times was originally interpreted to mean that paying attention to overall worker needs would improve productivity. Later interpretations suggested that the novelty of being research subjects and the increased attention from such could lead to temporary increases in workers’ productivity. This interpretation was dubbed “the Hawthorne effect”. It is also similar to a phenomenon that is referred to as novelty/disruption effect.[6]

 

 

 

 

 

It’s Time

Not much has changed in the previous ~month. Life still revolves around Monday chemotherapy sessions. The big blue recliner over by the windows at UPMC Hillman Cancer Center is my one throne to rule them all.

The side effects have been a bit worse over the previous two weeks. I could speculate on why, but will save it for asking the doc. At this point, there is definitely a bit of a learned response. Given recent history, just the sight of the infusion pump becomes enough to incite some queasiness. But there are a number of physiological responses that seem well beyond mere perception. The side effects now hit a peak on Monday evenings and slowly diminish through the week. I never feel normal, but by Wednesday or Thursday can do some things. By the time that I begin to feel substantially better, it’s time to go back in.

I hate to admit much less type this out. But in some respects, I’m passing time. Sure, I see and enjoy the many gifts around me, try to serve others and learn something every day, not waste (time) my most valuable resource, and grow closer to God. But most days, almost everything is a bit of a chore. …And those hours where all there is to do is press my knuckles to the back of my forehead, and pray. Did I mention that I never really feel normal ; ). Even on great days, a cloud looms. The future is still uncertain (more than it always is). I eagerly await the next CT scan. Not that I need a doctor to give permission to live a somewhat normal lifespan. But I keep hoping… At some point it would be nice to hear some indication that we have a decent long term plan and my chances are…good!

Thanks for hearing some gripes in my time of reflecting out loud.

“I just wanna stay in the sun where I find
I know it’s hard sometimes
Pieces of peace in the son’s peace of mind…”        

[ Still a Twenty One Pilots fan ]

In the mean time, today, I will keep doing more of the things of the living. I’ll see the joy and seek out goodness, bring light to others, and trust the Lord with the process and outcomes.

I’m moving a few weights against gravity again, not pushing it. Despite the internal chemical environment, continued various losses, some strength and body weight is returning. With this I’m highly curious, as some of you would imagine. I just do the work of conservative progression, trying not to think too much of lesions in bone and red blood cells, among other things. “A little more iron than a week ago” is my own home remedy, unproven, alternative, cancer treatment. Anecdotally, it’s a most therapeutic offering! It’s also good, both physically and mentally, to move and hang out with my sons and the guys in the basement. I mostly sit around; do a little chiefing. Sometimes it’s hard not to do your job. Thankfully, I have plenty of work to do. Not just in the clinic or weight room.

Thank you again for so much support.

Booklearnin’

Physical illness brings a lot of resting and sitting around. That’s more of a change for some than others, but it’s needed. Your friends and family understand and sincerely want to help. They have a story or know a story; something that helped them or another friend to navigate a major life challenge. They give you a book (or send you a song)! With anything like this hand-selected for you, the entire work is colored by the relationship and life of the giver. Well, for me it is.

A rather large stack of such books sits behind “my” chair in our living room.

This is great when you love to read and have the time. For years I’ve kept an informal reading cycle, three broad categories of something spiritual/devotional, something for health/wellness and professional development, and something fun, usually fiction. I’ve read approximately 3/4ths of the books given to me. Of those, I have learned something from all of them, and have enjoyed a little over half of them. Please don’t feel bad about that. The truly surprising and odd thing would be to report that I completely resonated with each and every one.

The difficult thing about this scenario is that the books are not all in agreement. Some commonalities and consistencies exist within any topic, but differ in many important details. Books about the best way to deal with cancer are especially contradictory. Unlike individual articles or social media posts, books provide plenty of context and explanation of the author’s journey and thought process. Because of that, this “worst thing” is also the best thing. It’s where true learning and better understanding happen! So thank you, and keep them coming.

Although I’d like to claim otherwise, it’s still impossible NOT to initially judge a book by it’s cover. There are books that I -wanted to like- based on the cover and person giving it, but did not. There are others that I initially -wanted to dislike-, but loved. For example, The Life Changing Science of Spontaneous Healing (by Dr. Jeff Rediger) is a bit mistitled because it actually gives many helpful, practical insight and fairly thorough understanding of the critical principles behind many systemic health problems. One friend had the audacity to hand me a book with a cover and title boldly proclaiming that our bodies are but a placebo and it’s only our beliefs that hold us back. Imagine reading that cover, having recently, fairly suddenly been nearly glued to a recliner, riddled with tumors and toxic medicines rendering you a fatigued and nauseous lump. But I know this long-term friend. There is a history, and I trust his heart. Because of that I forced the book open a crack, learned a few things, and largely enjoyed it!

Lastly are the books that I did not want to like and very much did not like. How to Starve Cancer (Jane McClelland) was not given to me, but was highly recommended by more than a few friends who have dealt with or are currently dealing with cancer. This one appears to be currently popular among this population. Explaining a few specifics should shed light on the general picture of what we’re all dealing with in so many health and wellness topics.

-Jane is far more of an entrepreneur than any kind of doctor or scientist. To me, this is obvious not only from her bio on the back cover, but also by her writing voice.  I’m not sure “The award-winning creator of Bathrobics toiletries” is the most reliable and trustworthy source for such a complex and pervasive of a topic. Cancer is absolutely…emotional. Jane knows how to get a lot of mileage from that.

-Jane makes the assumption that her rather horrific and traumatic experience in the UK healthcare system is the rule for all patients. To deny or invalidate her experience would be wrong. Indeed, the system is far from perfect. But readers should be reminded that everything that she writes about mainstream medical systems and treatments are tainted by her personal trauma (and two or three burnt out, plain uncaring, and likely overworked oncologists). My personal experience so far is quite the opposite.

-The foundation of Jane’s work and recommendations sound quite scientific. I have no doubt that a large portion of it is rooted in -some- -good- science. But so many of her assumptions are, well, false. I declare “Fake News,” haha. The concept of “starving” cancer through diet or otherwise is highly misleading. While scientists at colleges and universities around the world say this and attempt to use various methods, from a wide variety of angles, to hone in on very specific answers to specific problems, Jane seems to think that she has arrived at better, clear-cut pathways as a one-person revolutionary. Though possible, it’s highly unlikely. Jane describes so many supplements, conventional and unconventional medicines, lifestyle changes, and other treatments that who really knows what treatment is doing what, for what!

Real science knows better, discovers differently, and has to ferret out complex details over a large variety of individuals. Or in other words, throwing a bunch of crap against the wall and seeing what sticks is different than real science.

-The entire “Why?” of the book is based on a great conspiracy. Pharmaceutical companies, colleges and universities, and almost all cancer centers and the doctors have all conspired to the benefit of pharmaceutical companies AND cancer foundations. Being reminded about the exact same problems of “Big Pharma” every three pages becomes tiresome. Using old and relatively safe drugs in new “off label” ways is not Jane’s unconventional idea, but is indeed a conventional treatment and area of study at legitimate research institutes.

-The companies that sink nearly incomprehensible amounts of money and manpower into developing and then approving an effective and safe drug will almost certainly charge a significant amount of money per dose. No conspiracy needed. That is how the system currently works, for better and for worse.

-Just because a cheaper drug or other treatment does not pay “Big Pharma” does not mean that it’s not highly valuable and sought after. Many groups and individual have great personal interest in using anything at our disposal to solve this riddle. A prime example are the insurance companies! A friend who is a distinguished PhD and cancer researcher at the University of Buffalo recently advised me that “It’s important for you to remain comfortable, warm…don’t let yourself get cold for long.” This is scientific, literally based off her team’s fascinating research in mice and humans, looking deep into various stress-induced responses of cancer stem cells. Pharmaceutical companies do not benefit one ounce from this cutting edge “treatment.”

-Lastly, Jane’s tone is highly authoritative, without real credentials, and to the point of being prideful. There is nearly zero humility in her laments or criticisms, much less her victories. Maybe it’s just me and my own pride issue. To some people, her sort of tone may demand respect and confidence. But I’m not impressed by it.

Let the reader beware…even right now ; ) . As always, thanks for taking the time to read my journey and thoughts. I hope and pray that you learn something. Keep reading, and growing!

 

 

Gaining “Good” Weight – Diet (part 2)

Part 1 was a fairly broad look at the importance of targeted training and recovery as essential components of gaining muscle. This entry delves only into diet. But it is important to understand the big picture mentioned in the first entry.

Broaching the topic of diet is touchy. Genetics are not all the same. Socioeconomics differ, and largely impact what is practical. Our cultural and even family customs and values are different. At the end of the day, different means and methods do work and fail for different people. Keep that in mind when anyone tells you precisely “What you need to do.” With that being said, here are some essential components for many, possibly the majority of athletes, to gaining muscle. Think of it as an informed starting point for you own journey.

Not, in fact, an “anytime” food.

Food Quality and Quantity

You do not need a Four-year degree or the next diet book to know what healthy food looks like. In kindergarten we learned the difference between an “anytime food” and a “sometimes” food. Naturally occurring fats in unprocessed foods like eggs, cheese, fish, unprocessed meat and seeds are GOOD. Minimally processed carbs are GOOD. For athletes -some- extra dietary protein is GOOD above what is advised for the average person. Ignore anyone who tells you that apples, bananas, blueberries, tomatoes and beans are bad. And yes, I understand the idea of the strict two-week “keto” carb watch. These extremes are almost always unnecessary, especially for weight gain. Designer packaged foods that advertise “no/low carb,” “paleo,” “keto,” “vegan,” and “organic” are not always good, and often are some of the worst things for you.

Grandpa’s old fashion advice to eat “natural, less processed foods most of the time” applies to everyone.

Now, it’s the quantity of food that needs to vary. Much of the fitness and diet industry is tailored to the middle aged, fairly sedentary desk worker looking to lose weight. Ignore all of that advice. Athletes who are growing and / or training and competing with consistency have different needs than the average person wanting to maintain or lose weight. Just like training and practice, focus on consistency. Pound something quick and easily digested immediately upon awakening and after training. Add some real food where and when you can, an extra half sandwich and the bowl of soup. It is not hard to consistently add a little, two to three times per day. Over the weeks and months, this provides for the type of “good” weight gain we are after.

Being Realistic

The body can process a limited amount of protein at any single feeding. This depends on a number of factors, but 20 to 30% of overall calories (or about 30 grams per meal) is usually more than enough. Anything beyond that is excreted or stored as fat. And when you calculate out how much lean tissue (muscle and connective tissue thickness, greater bone density, etc) a human can actually accrue over a given time, it turns out that 2 to 4 pounds of lean tissue PER MONTH is the absolute best you’re going to get. Detailed nitrogen retention studies support this.

Too much, too quickly

Don’t be impressed when someone says they gained 50 pounds in a school semester. Unless they were a collegiate linemen, they would have been far better off in both the short- and long-term to have gained around half of that. Gaining 20 pounds of muscle and 20 pounds of fat every 4 to 6 months costs you more than it’s worth in terms of both performance and long-term health. You should not throw down food like a Scandinavian strong man, sumo wrestler, or the “average American diet” of fries and Cheetos, in order to put on some muscle.

Too little, too precise.

In my (and others) experience, athletes who seek the Holy Grail of simultaneous fat loss and muscle gain wind up doing neither very well. Again, the body systems function as a unit. Our hormones are literally shifted into either “breaking down” mode -or- “building up” mode, and trying to ride the thin line between the two is almost always counterproductive. Please forget the various notions and iterations of “underfeeds” on off days and “overfeeds” on training days. Your goal is to provide a reasonable surplus of nutrients over all days, whether training or recovering. To drastically change your food intake on off days shows a lack of understanding of human physiology and an under-appreciation for the role of recovery. Under- and over-feeds are unnecessary at best, especially for teen/twentysomething athletes who lack decades of experience to know their body well.

In theory, it is possible to simultaneously gain muscle and lose fat. But instead of gaining, say 20-30 total pounds over 6-8 months, the thin athlete adds (maybe) a few pounds of muscle in the same time period. And that is precisely “How to not be a game-changer.” The far majority of people claiming to have lost fat AND gained muscle are those who were very overweight to begin with AND they have either never trained before or are coming back after a long period off. Mostly, these individuals have maintained or slightly improved their muscle mass while dropping a lot of fat around the muscles. The appearance appears “more muscular.” But they have spent time in “breaking down” mode. As an athlete, none of those are ideal. Establish good habits and gain a reasonable amount of weight to begin with.

Just Right

In reality, when the body gains muscle, it almost always gains some fat as well. I like to think that, in theory, one or two pounds of fat is absolutely normal and acceptable for every three to four pounds of muscle gain. That leaves you with a reasonable and easy-to-track goal; gain approximately 5 pounds on the scale per month. If you gain that much over six months, while eating mostly minimally processed foods and hitting the weights intelligently and consistently, you should assume that you’re doing it RIGHT! Most will probably find the first 5 to 10 pounds fairly easily, but the next 10 to 20 will require much effort and discipline in nutrition, training, and rest/recovery.

Practicality

     What’s truly the better option?

For weight gain, it’s helpful to see a little less black and white. Just like training and competition, planning ahead is a major part of this. Having a knowledgeable and “into it” parent absolutely helps in terms of meal planning and prep. But these are not always an option or available. Surprises will still come, especially with the simple nature of life as a teenager, with varying academic and sport schedules, with hopefully a balance of both spontaneity and independence in figuring things out. College students are still figuring things out (parents are too!) and also have to deal with major moves and multiple schedule changes three times every year! So be ready to not always be ready!

Getting every ounce of your food from specialty and boutique grocery stores may be you (or your parents) preference, but it is just not necessary for better performance or wellness. You should probably disregard the advice from those who do, for they are living in a different world than the other 95% of us. It’s simply not practical to think that you are going to manage to eat from only one source for very long. With the amount of mostly healthy food you’re eating, your few supplements, your training plus any travel/competition, your investment will be plenty high enough. Of course, I think this is a worthy process and investment, as I have shown through the life of my kids and myself.

Fast food

Wendy’s and the like are not ideal. But if the team is stopping there, or sometimes (not always) you are just in the mood for it, is it really better to always skip it or eat nothing? Going by the general advice outlined above, you absolutely can have something decent and still get your fix. Avoid the deep fried stuff as much as possible, for that is some of the worst of the worst for your health and performance. Rather than a double Baconator (or really any extreme sandwich), fries, and soda, go with a double burger, a grilled chicken wrap, and water. In the morning, skip the pancakes and hash browns and instead have an egg Mcmuffin or two. This is by no mean health food. But please, it’s not – always primarily – about that. There are plenty of simple yet tasty and filling options that at least won’t hold you back, and are compatible with your goals.

Black and white  – “All fast food is of the devil and Trader Joes is always good.”

Seeing the grey – “Let me be mindful of any selections, see the big picture, and find something that fits with my goals.”

Supplements

The far majority of supplements are fairly worthless. One handful of trail mix before you train would serve you much better than designer “amino acids.” Chromium Picolonate slightly helps older diabetic patients regulate blood sugar, but does nothing (just for example) for the performance of athletes. Nitric oxide is one of the most hyped and trendy supplements that does practically nothing for strength/speed/power athletes.

Some supplements are not necessary, but they are convenient. Protein powder is usually helpful. Keep in mind that loads of extra protein are not necessary when your diet is generally in check, and natural sources are generally better than powders and mixes. But as an athlete, sometimes you wake up without a big appetite and/or just need to get moving on the day without cooking a veggie omelet. I know what it feels like to finish a challenging training or practice sessions, need to refuel, but NOT feel like immediately sitting down to roast chicken or steak stir fry. I understand that while salads and veggie-based, balanced meals are ultra healthy and do need to be part of a weight gain diet, they make it difficult to have enough room and appetite to take in enough total calories. Go ahead and try to get your three to four thousand calories per day in a strict “clean bulk” of all whole foods and no supplements. Get ready to constantly feel stuffed and make trips to the bathroom. Some supplements and a little high glycemic (sugary) type drinks and supplements can help with this.

So, immediately when you wake up, blend some fruit and protein powder into a liquid of your choice and pound it. If that’s asking too much, just go with the liquid and a shaker cup. Do not make this an “all protein” type event, for the body greatly benefits from some carbs to run on. You really need to get some quick, tolerable, quality calories AND still be able to eat a “real” breakfast in an hour or two. Immediately after training or practice, have another smoothie, quick shake, or even chocolate milk. At this time after training, the easily digested protein and sugary carbohydrates are actually BETTER for your recovery (muscular protein and glycogen synthesis) than sitting down to a “healthy meal” of real food. And again, this should leave you feeling hungry rather than stuffed in an hour or so when it is time to eat a normal healthy lunch or dinner. Again, the supplements are still not necessary. But they usually help you to fit in a few more feedings (quantity) of quality calories – exactly what’s needed for “good” weight gain.

Lastly, there are the rare, the few, the proud supplements that actually work. When in doubt, please check out examine.com for some of the most clear cut, scientific, and bias-free reviews in this realm. Vitamin D, omega-3 fatty acids, and creatine are a few of the most researched, proven safe, and -actually- effective supplements out there. I always tell young men and women not to even bother with creatine until they can honestly say that their diet and training is consistently on point for at least five months. If you are mindful of your overall caffeine intake and begin to think of it as a sports performance aid, it is absolutely one of the most effective supplements out there. But just like the space devoted in this article, supplements are at best 5% of what truly matters.