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.