ten eighteen twenty-one

It has been a rollercoasterhell of a year. I simply cannot think of a more accurate way to describe the year which was obviously difficult, and mostly not fun. Amy, the kids and I have so much to be thankful for, and 2020 has given us an awareness of this. Surprising, grateful, humbling, painful awareness. Overall this is a good thing.

Thank you for so much love and support. The past year was certainly not all rainbows and lollipops for you, either. And yet so many found time, energy, finances, patience, and many, many thoughts and words of prayer to lift us up. We literally could not have done it without you. I bite my bottom lip and cover my eyes, lean forehead on an open hand (and other lame strategies). But the tears still come. Your generosity has honestly brought me to tears far more than everything else that occurred in 2020.

It will do me well to remember that despite all this, the year did have a strong finish. Yes, it’s some good news for this update! There are still many caveats and unknowns, but I cannot think of a simpler, more accurate way to describe it.

After some communication and scheduling issues, I finally had the chance to see Dr. Reninger to review the results of the most recent CT scan from early December. Scanxiety is real; always looms over you in the mild purgatory between the actual procedure and the moment when a professional sits in front of you to explain the details. Sure, you can log into the chart and read the radiologist report for yourself. But it’s not a good idea. We have been burnt by that, both ways (thinking results are good when they’re actually pretty brutal, and the opposite). We should know better.

You don’t need to hear the gritty test details. Besides, seeing the report in writing still makes me cringe hard. But tumors are DOWN across the board. They’re even significantly down, which is “remarkable progress” given where I started and at the time of the test, having only ~8 weeks of immunotherapy.

Since I’m experiencing only relatively minor side effects, the plan, for now, is to stay the course. When a certain routine or drug combination has the number on an aggressive cancer, you don’t fix what ‘ain’t’ broke. Feeling tired and cold most of the time, bloody noses and random blisters on the back of your hands are nothing when you’ve been through GemCis and FolFox chemo protocols, with unrelenting painful bone metastases in the time between them.

Only a few months ago, the small end table near where I sit in the living room was overflowing with safety cap, translucent brown prescription medicine bottles. It was a full-time job keeping track of what should be taken and when. The other day I glanced over and realized that only two of those remain. If you allow me a decent sit, I will still probably pull a grandpa Simpson on you. I guess sleep is partly how you fund a revved immune system for a major, around-the-clock war campaign.

And what was that? Did I just hear the “R” word? Because it sounded a lot to me like the doc just said the word.

“Remission.”

To paraphrase:

“Maybe you’ll be one of those. …The more recent data shows that a patient who makes it a year on immunotherapy has a better chance of successful management and long-term remission.”

From the beginning, I have felt genuine respect and care from a number of professionals specializing in the field of cancer and cancer research. They have been immensely helpful, patient, and greatly encouraging. But not one of them have given me false hope, or spoke of “long-term” anything. I don’t know, but suspect this is because 1) they truly cannot tell how I’ll respond over the mid- to long-term course of a given treatment and 2) the prospects are generally not good. Healthcare providers know, but patients rarely understand, that sometimes the prognosis truly is not worth talking much about.

This was the first time that I’ve heard mention of something tangible and set in the mid- to long-term. I began immunotherapy on 10/18/20. Next October is a ways off and there are by no means any guarantees. But I need to make it past 10/18. It is highly unlikely that we will ever be able to fully put this behind us and go our merry way. But having something to shoot for, and at that point even just a chance is like a gift, or having another birthday!

Of course biological systems and subsystems are no respecters of such cut-and-dry, artificial constructs. But human minds very much are. Things (ideas?) like 10/18/21 are a legitimate tool that we use to gain a little bit of traction on an incomprehensible and profoundly amazing timeline.

Maybe this “goal” is like aiming to get to the end of a rainbow. Or possibly I misheard or misunderstood the doc, and now I’ve etched it in stone and hung it over the mantel. This could all be clarified in less than a half hour with so much as a phone call. But I’m not going to do that. I don’t care. I’m going with it, however much myth and misunderstanding.

It still is truly best to stay in the day. That’s usually all that we here at the Gorinski home can handle. Some days I pursue little more than trying to keep my feet warm. Each day is a blessing, with new mercies every morning. Oh, and also…each day has enough trouble of it’s own.

For now, it feels really nice to also have some kind of long- or even long-ish term base, keeping in mind that nobody has the future pinned down. After all, the future IS uncertain, and the end is always near. ; ) If in the past I forgot that tomorrow is not guaranteed for anyone, now I sure don’t. Sometimes I feel like Scrooge waking from his enlightening evening with the Spirits. I don’t suspect that I was previously a Scrooge. But at this point there is definitely a different perspective and emphasis, for however long it lasts. There’s a new and renewed appreciation of others, and what God has done and is doing.

10/18/21

Let it roll…

Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.  Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

-James (4:14-15) references Ecclesiastes

heavy numbers

It seems that I’ve had a “turning of the corner” in recovery. I’ve been on immunotherapy drugs for just under ten weeks, and the degree of change in that timeframe is difficult to believe. The type of adversity that we navigated in the previous few months will legitimately strengthen you and bring you closer to God. It will also leave you a bit on edge.

I understand that we are supposed to trust, rejoice in the day, and remember Gods promises. “Everything is possible for one who believes,” simple as Matthew 9:23, right?

It has been a year of sincere prayer while under the thumb of an evil disease, combined with simple observation and experience, and reading more than is good for me about the typical course. It all makes it hard to let your guard down. You may fight, and through much discomfort and quality time spent with healthcare professionals in sanitary environments, gradually gain ground. Then suddenly at any moment, the floor drops out.

Drop Towers are a metaphor for dealing with many types of cancer.

So please pardon me doc, friends, family, if I seem a little paranoid. I have previously never been much of a worrier. Sure, there were the kids, the existence of tics, and meetings with the financial advisor. But I never dwelled very long over any of those, much less life’s scratches and dings.

But now…

I recently scratched my own cornea, knew exactly how it happened. Still, for days I swore this was the immunotherapy drugs attacking my vision, as this is a side effect listed for Keytruda. A fairly normal stomach ache was definitely the drugs attacking my large intestine, something specifically mentioned on the Merck commercial.

Sometimes, after 10:00 pm, I’m not just tired and somewhat over-did it for the day. No, it’s…

Confusion, fever, muscle weakness, balance problems, nausea, memory problems, or encephalitis.

…All caused by my medication, of course.

What really puts my mind at ease?

-A good nap.

-Quiet, reflective prayer. Counting my blessings, naming them one-by-one (seriously thought!)

-Reassuring words from my oncology team and friends with serious medical credentials.

-Goofing off with the kids, weight training, or even a good walk with the dog.

In reality, this is not all paranoia. I truly have been brought fairly low. I have experienced mild to fairly debilitating side effects, and that’s not to mention the discomforts and problems associated with the primary disease. I have been made dependent on others in almost as many ways that I’ve been stuck and prodded in the veins.

[Thank you again for pouring out love and support. We literally see you as the hands and feet of “The Lord provides.” But leaning on others this much will always be humbling; always be a bit of a challenge for both Amy and I.]

Remember, the 5-year survival rate for this specific disease is 7%-20%, with the average life expectancy of those on chemotherapy being four to six months. With other drugs, like targeted immunotherapy, the most recent numbers are difficult to pin down. But it looks like that stat goes to a little over 24 months.

Two of three cancer patient, faith filled personal friends, advising me in person and by phone, have passed away in the last few months. 67%, another sobering number in a low-powered study.

I’m younger and otherwise “healthier” than the average person dealing with this, and quite unwilling to consider myself an average. But the heavy reality is that first line chemotherapy helped me for about exactly as long as stated by the numbers. The second-line chemotherapy, known as FOLFOX, shown to generally be effective for around 35% for this diagnosis, did not help at all and only served to set me back.

The immunotherapy is working for now. Praise God! But no matter what, those numbers, they loom. I do pray for a miracle of healing. But I also pray that the numbers are outdated, because the professors and scientists sure seem to know what they’re talking about.

Twenty four months. That means I have about 12 more, eh??

[Slow head turn of denial, sets jaw.]

Lord, have mercy.

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.