Month: April 2020

This is a follow-up to a previous post that discussed some issues regarding sugar. I’m not an endocronoligist, registered dietician, or even a nutritionist. Why the need to comment further? Sugar is one of those topics that is often misunderstood and seems to pop up around every turn. Sugar and associated matters do indeed occupy our mental space and even dictate daily decisions. Just today I had to repeatedly tell no less than three kids “After you eat lunch.” Right now I’m a bit groggy for having dumped most of my tea, which is fairly gross with no sugar.

There is nothing magically bad about sugar.

“Okay chief. But if sugar is not so bad for cancer and in general, then why is everyone always saying it’s bad?” 

Sugar is vilified but undeniably loved. For many reasons, eating too much of it is as easy as breathing. Eating even reasonable amounts requires deliberate, inconvenient action. Our biology…exists. Our culture and environment betray common sense long-term health. There ARE ultra powerful lobbying groups. Manufacturers DO answer to wall street, mega-advertise, and hyper-engineer foods. As humans, we DO misprioritize and plain make poor choices. Yet at the end of the day, we DO have to eat.

I know little about all of that. I do know some things about physiology. This, with personal life interests and experience, begat a fascination with further learning. There are plenty of excellent, evidence based places to find that information. Most of us could use a few months refresher in biology and chemistry before even thinking about physiology. And of course, there are even more pseudoscientific, mostly quack-ish places to be misled. The real science can be tedious. Skipping steps and taking in pseudoscience is…costly.

What would I write if I wanted to avoid most of the above, but hoped to show something like “how it is” with sugar? Hmm. That would be an entirely separate writing.

• – – – – – – – – – –

 

Lane grew up in the small town suburbs. His backyard ended in a patch of unkept woods and around the corner was a township park. Venturing outside was safe enough, and Lane had freedom and plenty of room to move. Mostly, he benefitted from having working class parents that hoped to lead by example. They exercised sporadically, did their own house and yard work, and made good on most of their attempts at moderation. They provided imperfectly balanced meals and didn’t obsess with a new diet every other year.

As a boy, Lane had an active temperament. He was blessed with a handful of neighborhood friends who enjoyed the outdoors and their bikes. Lane ate what he liked of what was offered. At times he ate what was required to get to the snacks or desserts. Lane knew plenty enough about nutrition. Even a child can perform the truly lifetime skill of deciphering an “anytime” versus a “sometimes” food. But in practice, he rarely thought much about it.  Lane gradually became serious about training and competing in athletics. As a teenager, Lane felt a sense of obligation regarding what should be eaten. But this was easily long forgotten in light of very real cravings and social gatherings.

Through all those years, there was stability and structure to Lane’s days, weeks, and months. A consistent rhythm to life, supportive environment, and active lifestyle left him strong and fit. Sugar was plentiful, but kept reasonable by equally plentiful checks and balances. It was absolutely no threat to his health or well being.

At eighteen, Lane left for college. After settling in, he remained physically active with a part time job, plenty of pick-up sports, and lifting some weights. But there was X-box and plenty of young adult friends more than eager to learn about freedom and sleep and time management the long, difficult way. The peers who previously had diets and lives tightly controlled by their parents were often (but not always) the worst. Lane managed just fine, but did lose sight of his previous life rhythm. He was busy. The convenient snacks and fast foods were no longer tempered by home cooked and mostly healthy meals. Lane often felt exhausted but was still riding the wave of youth. Sugar was -still- no real threat to his physiology. But the patterns and times, they were a’changin’.

By his mid twenties, Lane fell into a well paying but sedentary job. He made some effort to eat better but depended on snacks and drinks and take-out to get through the day. He usually missed playing and instead biked or jogged at the gym for 30- minutes three times per week. There was Netflix and sports on TV and still, X box. On average, the calories in far exceeded the calories out. The years of sugary and hyper engineered snacks that his body once easily processed added up. In some ways, he was malnourished and always hungry for more. Sugar was now a legitimate problem, but by no means was it the entire picture.

Internally, Lane was losing muscle, which has long been recognized as a part of both the endocrine system and as a pancreatic organ. He was getting slightly soft in the middle. Less muscle meant less capacity, “a smaller bucket,” to burn and store energy [Energy = blood glucose]. The added adipose tissue subtly tipped off a series of fairly complex hormonal and metabolic changes that caused all the cells of his body to be less efficient in receiving the energy they need.  With a few YEARS of this, his blood glucose and triglycerides levels did indeed rise, especially after unhealthy foods and even after somewhat “normal” meals. Sugar was definitely an issue, but far from the only issue.

Though Lane made efforts to squeeze in some formal exercise, his days were busy and largely missing in fresh air and general, unstructured m  o  v   m  e  n  t. Taking in more energy than he spent was, for the most part, still due to a diet that consisted largely of easy-to-inhale starchy carbs. In former years, his body and lifestyle easily handled a bagel, a turkey sub, a plate of spaghetti, and after-dinner bowl of Honey Nut Cheerios. But now, all such things caused a mild but far too frequent internal, cellular level injury. This, in combination with malnutrition and lack of sufficient sleep, further threw off the fine-tuned hormonal balance. The slightly soft middle accumulated rather quickly despite efforts to ramp up a formal exercise program. A few not well thought-out efforts to “really buckle down” on diet stalled rather quickly.

At this point, any extra sugar or even typically “good” carbohydrate entering Lane’s system from the diet caused an abnormal in the blood response. Due to various factors mentioned above, increased amounts of insulin were needed to shuttle energy from the blood into working cells. Would Lane’s pancreas be up to task? It turns out that his had limits; simply not genetically capable of picking up the slack for the years of what had been set in motion. Sugar was a major problem, but by no means the sole villain. Lane suspected that why he was tired and achy and so often feeling bleh. A strict no carb, ketogenic diet seemed to help but for many reasons did not last. This was followed by a focus on some minutia the type of dietary sugar, gluten, and then organics, all of which did very little other than temporarily, expensively, force him to eat less. But they were a step toward turning the ship around.

Lane felt stuck until he saw a doctor who sat down for a while to take in the big picture. He may or may not need to -really watch his diet- for the longer term, and take a mild to moderate does of medication. Lane realized the need for a change in life patterns and habits. He would simplify and focus on getting more unprocessed foods, getting adequate rest, weight training to build back some muscle, and making time for some of the active labor and leisure of his youth.  He had plenty of time, but it would be a long-term committment. In time, Lane found that so long as he mostly kept up with his overall lifestyle changes, he did not always have to eat -perfectly- to manage his condition. He would do well with eating the right stuff ~90% of the time.

Dietary sugar would be a relevant factor in that simple calculation, but by no means the only factor. Unless the wheels really start falling off the cart, that’s how it is with sugar.

Here are final thoughts in reflecting on some of the why and how a healthy middle aged guy comes down with a sudden and rare stage 4 cancer. In retrospect, I did -mostly- take my own advice. And there is not always a rhyme or reason to life. But there were absolutely gaps that are generally known and backed by quality science. To summarize-

1. Shortchanging sleep.
2. Not enough vegetables and practically zero omega-3 fats in the diet.

These are two dietary issues. Everyone wants to fixate on diet for every ailment when evidence shows that’s not the entire issue. The two points above describe many adults who don’t come down with major autoimmune problems. Hmmm.

The final gap, I believe, has to do with stress. I do not believe myself a high strung person. Ask my wife, or anyone who has worked along side me for the last twenty years. The illusion of control and amount of involvement seems to be a sliding scale depending on temperament and values. History has shown that I tend to generally know when to step in and when to be quiet, when to be concerned and when to say “not my monkeys, not my circus.”

I enjoy making the most of my time, nothing wasted. And I enjoy a lot of things. And there was a lot going on. Five kids that ARE my monkeys, self employment, and managing a home. I looked forward to two to three weight training sessions per week. I would regularly stay up reading, some praying, some plain goofing off, decompressing. Weekends were spent attempting to stay organized, enjoying a lot of soccer games, usually a little work, church, sporadically mountain biking, and if there was spare time, making time to just hang with friends.

In retrospect, it was just far too many “ands.” Too much mental processing, even on good things. Too much physical stress. For this season of life, cutting a few things would have been fruitful. But what? Just because you enjoy the work and play does not mean that it’s stress free on the system.

This issues of systemic stress is another trip down the many routes to inflammation. Dr. Rediger, quoted above, and so many others in this field point to chronic inflammation as the common culprit behind so many chronic diseases, especially those having to do with the autoimmune system.

Dietary insufficiencies lead to systemic internal inflammation. Being in constant “go” mode without enough “rest and relax” mode, inadequate sleep, and too much stress from any source is all additive. Through many avenues (not only diet) this leads to a hormonal balance that promotes chronic inflammation.
Dr. Rediger writes extensively about the importance of managing weight/body composition, bitterness/unforgiveness, having deep connections with a community, and the true health benefit of holding brotherly affection for others. His chapter on the latest evidence pointing to “survival of the kindest, as opposed to “survival of the fittest,” was one of the most eye opening things that I have read in a while. I honestly do not think these were gaps in my life. My childhood was like a dream, no trauma and minimal drama. I have no bitterness to revisit.

Oh, but the inflammation. I swear that at times, I could feel it.

My very first blood test prior to being diagnosed showed a (blood level) C-reactive protein of 90-something. The normal range is less than10. Elevated CRP is a non-specific finding especially associated with liver function, but can come from a number of issues. However, that degree of inflammation was literally off the charts, especially in someone without suspected metabolic disease, or literally in the process of having a heart attack.

By the time of that blood test, I did have a rather huge metastases involved directly in and around my liver. I had history of very limited Tylenol or alcohol use, nothing that primarily causes extra stress to the liver.

The liver and gall bladder still went haywire. Was this a cause or a reaction to the massive amount of inflammation? At this point, it doesn’t matter. But I do know that changes will need to be made when and if I get a chance to get back to “normal.” There will be zero intake of drink or medicine that stress the liver. No big deal.

There will be a general cutting back of mental and physical workload. I read (and believe) that for some, managing this type of disease to the greatest extent possible truly hangs on cutting back, even on “good” stress. In my current state of mind, the previous schedule seems exhausting. But I know that if and when the time comes for returning to “normal,” this cutting will be a challenge.

At the moment, stressors for me include watching the news for too long, lots of noise and jostling immediately around me, and sometimes the school day. It helps me to have quiet recovery mixed with every occasion of noise in the home and socializing with others (even from a distance). Focusing on tasks and challenges of the day is helpful, and thinking in terms of prognosis and percentages and Google is not good for me. Reviewing things with my medical team is helpful. Reading my own imaging reports is brutal. This diagnosis in itself is pretty brutal. For now at least, it’s better that I stick with the outlook and expectations that I have established.

I’m not putting this on display for entertainment. I hate being the guy known for having cancer. I hope this retrospection will help you to take a brutally honest inventory as only you can do. What gaps, if any, do you have in “natural” temperament and lifestyle? Is there bitterness? Do you mis prioritize the time it would take to create some quiet space to reflect on the unconditional love of God? Or get in some structured exercise, or just play with the kids? Perhaps you are one who holds on to your diet, your regimen, your work life, or even your own family far too tightly?

Please understand that I do not intend to be a bit preachy or judgmental. I believe there is definitely a time for judgement, but that’s not my job, especially not here. But this holistic picture is where the evidence lies. Our lives, at least in part, depend on exploring these gaps. I absolutely understand that it is not easy to make adjustments.

We are all dealt a different hand, and I do not believe things like cancer and lymes and car accidents are -given- from God. But God is with us. And hindsight is not always 20/20.

In retrospect, I did -mostly- take my own advice. But there were absolutely gaps in diet and lifestyle that could have caused my immune system to miss a rogue mutated cell and allowed it to replicate and spread.

Rest

Work, household responsibilities and errands, kid responsibilities and quality time…welcome to adulthood. By the time you sit down with a little free time to think at 9:30 or later, you usually don’t march straight to bed. Sleep debt would be restored on most weekends, so I thought. Like many parents, I was mostly happy to keep this routine going for years.

Inadequate sleep over periods of time causes multiple hormonal changes that can lead to chronic inflammation and a weak immune system. Again we’re probably describing 90% of the middle aged world.

Past Medical History

In my mid twenties there were some GI issues that were initially diagnosed as autoimmune in nature. Ironically, this nearly coincided with the period that I was otherwise feeling great from having significantly lightened the training and nutrition load. When the specialist observed that imaging and blood tests were clear, he seemed genuinely happy. I gladly accepted his explanation. “This autoimmune issue is definitely not something that goes away, especially when you have long stopped taking any medication. It must have been an incorrect diagnosis.”

At my initial consultation, the specialist at Hopkins grilled for every detail regarding this. Paraphrasing the doc: “It’s a fairly common pattern, though by no means always, and most people do not get a complete ~15-year respite.”

Diet

Eating a reasonable amount of fruit has never been a problem. But I disliked most vegetables as a kid and almost definitely ate too little as an adult. There was some effort. You know…need to lead the kids by example. Nearly everyone -thinks- they eat fairly healthy. The single shard of lettuce and 1/8th of a tomato on my turkey sandwich were not cutting it.

When you spend much of the work day on your feet, have a three day per week habit of fairly intense training, enjoy some yardwork and yard play, you cannot get stronger or even meet your caloric needs by eating a lot of salads and brussel sprouts. Well, including them may be possible with a shift in mindset, but I had little impetus for taking the time and effort.

I should have made better effort in the vegetable department.

Fats

Drastically lacking healthy Omega-3 fatty acids is certainly another gap. Again, this is much of America. As an adult, I knew the benefits but rarely if ever ate foods that contained them. I’m just not the type of guy who goes with the Mahi Mahi, throws on some sardines, or grills salmon that neither he nor five fairly picky eaters at home are crazy about. I was going to get around to eating more fish or taking a supplement for at least ten years. I had little reason to remember to add in the chia seeds.

Over the years I have largely made good on what I believe are still good guidelines: saturated fats, especially those in relatively unprocessed foods, are not to worry about for most (but not all) of us. Trans- and unsaturated fats should be limited as much as possible. I’ll have two burgers, no fries please. And that brings us to…

Carbohydrates

I have observed that a person’s claims about carbs, or knowing how sucrose, glucose, and fructose differ structurally and in their metabolic pathways, often matters very little when celebrating, partying, undergoing stress or fatigue, or watching night time TV and pounding m&ms. ; )

Now the part that seems to keep coming up.

Does eating sugar cause or selectively “feed” cancer growth?

I have asked 4 highly respected medical doctors, 3 local and 1 a world renowned cancer specialist. Some of them I have pestered twice regarding this. All of them carry a reputation well known for practicing medicine with a holistic approach, taking time to learn with an open mind as well as listen to patients and prod the soft, traditionally unscientific edges. All have conveyed the same message. Here I summarize most what they have said, wrote, or sent me to read:

-Sugar **in the diet** neither causes nor accelerates cancer. It does not feed cancer any more than it feeds our healthy cells.
-Cancer cannot be “starved” of **blood sugar** with a low-carb diet, although it can “steal” that which normally goes to the rest of the body.
-In a few ways, cancer can cause our metabolism to change in ways that mostly break down the body’s own fat and muscle in order to supply **blood sugar** to the organs that need it most, especially the brain.
-Taking in a lot of sugary drinks and foods is never a great idea. Everyone, and especially cancer patients, needs the nutrients that are missed if we routinely fill up with junk.

I was neither a sugar addict nor a sugar Nazi. Desserts were usually social in nature. I could take it or leave it, and usually left it. Sugar does sneak into so many non-dessert foods, but I never really had the time or inclination to patrol that realm because I -was- healthy and active. That, and it has long been known that for nondiabetics, sugar ingested in a mixed meal (with protein, fat, and/or fiber) does not create the same blood sugar “swing” that pure sugar or starchy foods create.

Here I’m going to add something that I wish every lay person would keep in mind.

Sugar in our diet is absolutely not the same as **blood glucose** levels after the sugar is absorbed in the intestines, which depends on a LOT of fairly complex factors. The body -normally- has a number of ways to maintain, and needs to maintain blood glucose within a fairly narrow window.

Many of the claims that alternative healthcare providers want to make about sugar are in fact due to metabolic syndrome (obesity, high blood pressure, insulin resistance, and dislipidemia) that causes **blood sugar** levels to go haywire and cause problems, even WITH a diet that would normally be considered healthy.

High sugar intake over a long period of time (among other factors like inactivity) is definitely associated with the development of metabolic syndrome, and those who are even moderately “overweight” are indeed at greater risk of various cancers.

I have managed to largely avoid Google “research,” outside of this delectable issue. The vast majority of well established, reputable and purely informative web sites (not selling a process or product) reiterate the same message. Here is one of the most informative yet clear and concise pieces that I have seen. It comes from the Lymphoma and Leukemia Society:

Does Sugar “Feed” Cancer?

Lastly, I’ve recently read two cancer/healing books by Dr. Jeffrey Rediger, M.D., M. Div, faculty at Harvard Medical School, who now routinely leads research teams in the areas of neuroscience and integrative medicine. I leave you with a paragraph from his book Cured.

“My deep dive into the study of how nutrition can roll this back had been illuminating. It was clear that for a lot of people, changes in diet were like a doorway into healing. But they were not nearly all the same changes. And here’s the hitch: I kept seeing cases where the individual made no real diet changes and still experienced healing. Or conversely, there were those who made all the right dietary changes and didn’t make a dent in their illness. I knew diet was often a piece of the puzzle…But I couldn’t ignore the evidence: diet wasn’t the whole picture. The diet changes often came with a rippling outward of other meaningful changes in their lives.”

Tomorrow I hope to write briefly on two possible gaps such that Dr. Rediger speaks of, and summarize.

This week off treatment has proven overall to be -meh-, not feeling as well as previous “off treatment” weeks. The following is far less of an update and far more of “this is Bob feeling decent but confined to the indoors and desiring to practice an hour of writing habit.” Some of you may be interested in reading introspection on nutrition and others may want to skip it. Thank you for even reading this far ; )

Where there is a diagnosis made of -any- range of health complications large or small, you hear a LOT about nutrition. I have always been a firm believer that what we put in our bodies is important, and sooner or later, is reflected in our health and performance. However, I have ascribed to and promoted the idea that we do not need specific and laborious diets or supplements if our habits and behaviors lead us to eat mostly non processed foods most of the time, and include a variety of plants.

I had not taken a supplement other than protein powder and (intermittently) creatine since my mid twenties. For well over 10 years I took no medication other than intermittent over-the-counter pain medications and one episode each of prednisone (disc herniation) and decongestants (noninfectious but stubborn ear pressure). So yeah, pretty healthy dude.

This was not always so. In my late teens through mid twenties, I would tightly control my diet as advised by the books, magazines, the dude working at the supplement store, AND scientific journals of the mid to late 90s. I read the International Journal of Sports Nutrition at breakfast and the American Journal of Nutrition at night. Yeah…ask my parents if you don’t believe it. : )

If that wasn’t enough, I had access to the veteran “bros” at no less than three gyms. One of them was a bodybuilder named Vance. I won’t list his last name, but that alone should have been a warning that my first exercise with him should have been CAUTION. For a span of 4 or more years, he had me convinced that contrary to the advice of my own family to use balance, a high carb, low fat diet, specific supplements, and a six day per week weight training and “cardio” schedule was THE key to being huge, ripped, and adding velocity to my fastball.

By my mid twenties, I finally realized the whole thing was not working nearly as well as suggested. With seven years of college and simply observing my own experience as well as many fellow athletes and gymrats, I gradually came out of it and improved my critical thinking skills. Scientific study slowly progressed, began showing the cracks in the old modeI. I developed personal relationships, worked under, and even trained with a handful of Slippery Rock professors who I truly respected as people and sources of valuable direction.

Amy and I married during the last year of college, and immediately afterward had a job, house, and desire to be active at our church. I lifted weights 4 days per week and played rec basketball twice per week. I trained a few high school basketball prospects under the supervision of coach and athletic director Kirk Smallwood at Harrisburg Highschool. Seeing a few of his guys gain the size they needed and a few others resolve their knee pain, he was the first person who wondered why I didn’t “do this as a job.”

Needless to say, my time and interest in reading about, much less practicing -any- type of diet plan flew out the door. Having a taste of actual “real world” non academic experience provided some much needed perspective about a lot of things.

*****It was liberating to actually experience that not only are many “diet” practices (even those focused on getting huge and jacked) unnecessary and unhelpful, but they were also detrimental to the physical and mental well being of myself and those around me. ***

More recently, I have only sporadically given attention to developments in nutrition, and have simply observed. My profession has afforded a unique and (nutritionally) unbiased opportunity of nearly 20 years of listening to the stories of like-minded others, their successes and failures, what methods and means helped and failed them. I have wrote little about the lessons of my own journey, but here are a few encouraging perspective, simplicity, and thankfulness regarding what we eat.
—
The Perspective Diet
https://bonnylane.com/2017/08/24/the-perspective-diet/
Saying Little About Diet/Something About Diet
https://bonnylane.com/…/24/bonny-broaches-the-subject-of-d…/
—-
So many seemed to live by extremes, as if there were no options between the “standard American diet” of sugary drinks, daily fast food meals, and fried snacks and sweets -or- the latest fad specialty diet of zero carb, sugar, or other magic that is the answer to every malady. I strove to live by example what I (still) believed applies to the far majority of us. If we “eat like adults and not children” 80 to 90% of the time, get a reasonable amount of daily movement, and invest in body maintenance and repair, just 2 or 3 days of structured exercise per week, we would maintain good health and not have to be -so particular- about our diets.

Those beliefs “worked” for me for a long run. I know it has helped a handful of others. But of course there were gaps. Did I truly take my own advice? What actual science was I not aware of, or undervalued? In my current shoes, it’s extremely difficult NOT to practice hindsight, thinking long and hard about where, how, and why, a “very healthy” 43 year old suddenly comes down with aggressive cancer.

A wise friend and neighbor who knows me better than I thought recently dropped off Olive Ann Burns 1984 novel, Cold Sassy Tree. This is not (directly) a story about faith, but it included a concept regarding faith and prayer that many may have heard before but really caught my eye.

What made an impact did not come through a devotional, apologetic or theology essay, or any of the books that I have been given regarding psychological and faith aspects of healing. In fact, I think the “message” resonated because it was a well written story that happens to simply –show- what I have been experiencing through illness and subsequent treatment.

At this point, life experience and earnest seeking seems to have rendered me nearly immune to just being -told- big claims and directives regarding God and faith. It has taken me years to be comfortable with the fact that God has, one way or another, wired us all differently. On the other hand, I’m certain this has to do with my own pride issue. I have work to do.

Toward the end of the book is a conversation between a beaten, pneumonia stricken grandfather and his wife.

“Right now I’m not really prayin’. I’m just sittin’, starin’ with my eyes closed. If I went to prayin’, I’d be sayin’ words, thinkin’ about myself, what I want and what I’m afraid of. But this way I ain’t thinkin’ nothin’. I’m just feelin’ God’s presence. And it makes me feel safe – like I can do anything, including stand all this pain.”

Just sitting. Feeling God’s presence. I say (and write here) that I’m praying or resting. But while sitting in the rough times, I’m experiencing what it means to abide. [Not like The Big Lebowski, which I have never seen other than all the memes.]

Abide in God…Be still and know…Rest in Him…says the Scripture.

Sometimes I wonder if this understanding could have been gained through some lesser trauma. Would a fractured tibia or the pandemic alone been enough? I doubt it. Who knows. I am, or at least was, a person with legitimately alotofthingstoDO. And now life has drastically slowed down. I have been forced to witness God’s provision in an obvious and amazing way that was previously unimagined (to me.)

In the story, Grandpa speaks regarding his grandson, Will.

“Something Will’s been questionin’. He doesn’t understand why Jesus said, ‘Ask and it will be given.’ He says why would Jesus say such a thing when it ain’t always so?”

The grandmother responds.

“Tell Will that sometimes God has to say no for our own good, or to teach us something, or show His power. Sometimes it’s just not his will, or he wants to test our faith and see if we trust Him.”

Grandpa laughs. “You sound like every more pious than I ever heard. But Jesus didn’t say God might say no. He said God’s go’n say yes. Anything we ask for, we’re go’n git it. Well, hungry folks pray for food all over the world, but they shore don’t all get fed. Sick folks and their loved ones pray for healin’, but lots of them die young, or barely live on in bed. Jesus just had to mean somethin’ different from what so many folks think he meant. Jesus wasn’t no fool. Ask, but what for?…”

“…I don’t think Jesus meant us to think we can all get our way just by askin’. God made us so we want to live. He put healin’ power in our bodies. We don’t have to beg Him. All we got to do is accept bein’ sick, do what the doctors say, and trust that God wants us to get well if we can.”

[Grandmother}
“But, in the Bible Jesus healed people who asked, and believed. If Jesus could heal then…? If we pray and have faith?” asks the grandmother.
Grandpa answers.

“Faith ain’t no magic wand, but a way of livin’. It means you don’t worry through the days. It means you’re go’n hold onto God in good or bad times. You respect life like God made it, even when it ain’t what you would have ordered. Some of the same folks when they pray and don’t get better, say God let’m down. Some will flat out deny that God did let them down. But I say that’s not even what Jesus was talkin’ about. He was giving a guarantee on spiritual healin’, not body healin’. “
“…He was sayin’ that when you get beat down, scared to death you can’t do what you got to, or you’re go’n die, or folks won’t like you – all you got to do is put your hand in God’s and He’ll lift you up. Now I know it for a fact. When I pray ‘Lord, help me to not be fearful, help me to endure,’ it’s like an eraser wipes it away. We should ask for comfort and hope and patience and courage, and to be gracious when things ain’t goin’ our way. But they ain’t no guarantee of no troubles, or that the pain will right now go away.”

Amen grandpa. I do not want to live a faith that denies the obvious or fails to respect…reality. Even those with great faith often don’t get what they want. Others get far more than it seems they deserve. We all pass away at a rate of 100%.

Please do continue to pray for the family and I, however you see fit. I usually do offer praise and straight up ask God for healing and an end to this worldwide pandemic, among other things. But it seems wrong when praying is taught like from an instruction manual. After a while, at least for me, it comes down to little more than two things.

Thank you, God.

Your will be done.

Sometimes I manage to sit silently and feel God’s presence.

I do have peace.

This peace is beyond understanding. It’s not only for me, or those with a long churchy history, or some kind of super spiritual connection. It’s for anyone who will slow down (I think), and ask.

“Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.”
-Jesus as recorded to his disciples

_____
Olive Ann Burns spent the majority of her life working as a journalist before she turned to fiction as a respite during cancer treatment. She completed this and a partial manuscript for a sequel before her death in 1990.

In February of 2020, some friends created GoFundMe and Facebook pages in order to generate support for our family. These sites would also serve as a place to post updates for those who may like to know how things are progressing. I found that sporadically posting updates helped me to process things and simply share what was on my mind. Besides, there was not much else that I could (or currently can) do that quickly passes time while recovering from chemotherapy. It was not too long before those updates were written in somewhat of a journal format. Here, most of them are compiled as a part of the broader collection of what I have written. 

DIGGING OUT

2/17/2020

Day 1 of treatment went well. The most difficult part was hearing the details and signing the consent form that makes it sound like there’s practically zero benefit and I will suffer every major side effect before coming down with the Black Plague. Thankfully, a short time later my doctor saw me and reminded me of the greater plan and where today’s treatment fits in.

The basics of that plan are this: For this stage 4 cancer, chemotherapy (began today) they are using an aggressive (but likely greater side effects) protocol to begin shrinking all the peripheral sites (metastases) the cancer has spread to, and possibly the primary site taking up residence in the gallbladder and liver. In a few weeks when the intensity of the chemotherapy winds down a bit, we will likely add some radiation therapy. The doctors say they are going after this fairly aggressively because I’m young and was otherwise healthy prior to November or so.

This will go on for I believe five cycles, each using less intense chemo protocol. I have yet to consult with the radiation specialist so I cannot comment on that protocol other than beginning that does not coincide with the start of chemo.
Still, this is not at all expected to completely clear every area and put my cancer into remission. What we (and I think all stage 4 cancer patients), are really banking on are the genetic tests and highly targeted IMMUNOTHERAPY drugs that come from the Foundation 1 organization. IF my cancer cell (previously biopsied from the mass of my liver) show any “genetic tags” their labs can work with, they will be able to design my own specific drug. Genetic tags are common but not at all guaranteed as some cancers hide these well and that leaves their lab with little to work with.

Soooo…PLEASE PRAY THAT MY BIOPSIED TISSUE WILL HAVE THROWN LARGE HONKIN’ GENETIC TAGS!!

The immunotherapy shows by far the greatest chances of completely taking out the cancer sites as well as long-term outcome for those with aggressive stage 3 and 4 cancers.

Lastly, there may or may not be some type of specialized ablative surgery targeted to the primary mass. This may involved specialized technique at UPMC Pitt, out in Philly area (a newish proton technique at U Penn, or John Hopkins).
Next Monday I have my second round of chemotherapy similar to today, and Wednesday I visit a specialist at John Hopkins in Baltimore. This doctor has already communicated with my doctor in Camp Hill. But she will speak with me and personally examine and recommend any tweaks to my protocol.

Okay that was a long post, and I would much rather be writing rehab and training-related posts , but I wanted to share some of the details of DIGGING OUT for so many of you who text or call wondering how it went and what the game plan is. I genuinely appreciate the loving concern but it is eventually exhausting trying to keep up with everyone.

Please keep praying for the family and I.

With love,
Bob G

 

The Hits

2/22/2020

Hi friends. Just wanted to give a bit of an update.

My first chemotherapy treatment was Monday. The doctor said they were giving me a strong dose to start because I need it and I’m young and strong enough to handle the side effects. Monday and Tuesday went fine and I basically operated at my pre treatment (relatively low) baseline. But Tuesday night the side effects hit.

I don’t want to get into the details of the severe dry mouth, ears ringing, and other things they said to expect. Wednesday and Thursday were much of the same, with a lot of sleeping by day. It’s like having the flu where everything you think about doing, even getting out of the recliner, is a major effort.

But with some prompting by Amy and others I did manage to get up and go for short walks outside, do light house/kitchen work, and take a few trips up and down the stairs. This type of light activity usually made me feel better.

Imagine that…the right amount of physical activity helps you feel better…

Anyway, I’m definitely hanging in there and fighting – no question. By Gods grace I can walk and read and type this week, and I’m thankful for that. I’m so thankful for Amy having such care and patience with me here, and I’m thankful for all of you who have been praying for us, supporting us financially and in countless other ways. Truly, Amy and I feel your love and care and that helps tremendously.

Monday brings my second round of chemo, which I think will be somewhat lighter. Wednesday we visit a doctor who specializes in my type of cancer at John Hopkins, to review and revise the treatment plan (if needed) with my primary oncologist in Camp Hill.

With love,

Bob G

 

Life Slows Down

2/29/2020

Today was a good day. It felt like a day in early January, before having any thought that this may be serious. My capacity is still quite limited. But last night I finally slept well. Today was the first day in approximately two weeks that I did not feel some type of moderate pain or discomfort or tightness. I did not feel any type of medication induced side effect; the chemotherapy plus around-the-clock Benadryl and prednisone to mitigate Monday’s allergic response.

All that can change in a matter of weeks is astounding. Today I did not struggle for a foothold simply to hang on to the day and get off the couch. We did not run to and schedule and review various tests and doctor appointments. I could focus and read and reflect.

So much has been lost. For close to thirty years I have been accustom to being strong. Mentally and physically. I was never truly elite at anything, but was always capable of just about anything. Able. Kids threw the frisbee over the neighbors fence? Let me attack that fence. I absolutely loved the years, decades, of training and serving others with those physical abilities and years of accrued experience.

The present is not like that. Not at all. There’s just not much that I can do for very long. After simple tasks and errands and appointments I need the rest as if I had a long and productive day’s labor. I rely on Amy, family, and friends for so much. Amy, once again, without hesitation, puts her life completely on hold to be there for me in every capacity. I see her especially, and all this prayer and generosity and love poured toward us as nothing less than the work of God through human hands. When I view the various support and help offered on our gofundme page, every single time I’m in tears within a matter of minutes.

Otherwise I’m doing okay. Quite honestly, I’m not the least bit angry. There are zero; no true feelings of regret or remorse or “what if.” I simply miss being active and my work. I have a lot of time (and incentive ; )) to pray. I have peace about a number of things, and so much to be thankful for. Forty three years of literally countless blessings do not just vanish. I do not believe that setbacks and pain and suffering are for nothing. I do believe there is a greater good, and I have already seen God work some spectacular resolutions and reconciliation through this.

I’m going to fight this diagnosis with all I have, of course. I’m very inexperienced as a stage 4 cancer patient, and do not know what I do not know. I understand that plenty of more rough days are to come. I’m so thankful for the team of medical professionals and modern science behind what they are doing. But ultimately when and where any ability returns or remission occurs, to God, the great physician be the Glory.

Thank you for reading and praying for the family and I.

With love,

Bob G

 

It’s Always Something

3/7/2020

This was a good week, overall. There were a few major Wins.

Monday was a break week from chemotherapy, which takes place in a 2-on, 1-off cycle. I had blood drawn (there’s ALWAYS at least one blood draw). Dr. Felter reviewed the results, which showed some improved markers except in the realm of red blood cells/anemia. This was low to begin with and has only dropped week to week since beginning treatment. At the advice of the specialist at John Hopkins, we scheduled a blood transfusion.

In the afternoon on Monday, Amy and I took Luna on the short drive to the Messiah College baseball game. I bundled up well although the temperature was in the 60’s. It felt wonderful to watch a baseball game, to dwell among a light crowd of normal healthy humans not focused on my diagnosis, to be out under the sun for an hour, even if wearing a hooded sweatshirt. Monday was a good day.

On Tuesday, my echocardiogram came back showing no abnormalities. This was surprising, as the CT scan taken on 1/29 showed a metasteses pressing into the right ventricle. Tuesday was a good day.

The medical appointment of the day for Wednesday was the blood transfusion. I woke before the twilight of the morning fretting and could not return to sleep. I was mostly recalling the allergic reaction to iron infusion that took place the previous Monday. The sudden bursting into a cold sweat. The swelling and violently throwing up. The EMTs doing their jobs just fine but having absolutely no clue as to my recent health history. The 3.1 mile, $1800 nauseating and ice cold ride to the emergency room facing out the back window of the ambulance. There is plenty more to complain about that day, but I think the traumatic nature of this is plenty evident. The red blood cell number drastically needs to go up, but having a reaction to an iron injection does somewhat increase the chance of having a reaction to blood transfusion. I prayed a lot that morning.

Thankfully, the transfusion went without a hitch. Once things were established and rolling, I caught up on lost sleep through the majority of it. The nurses reminded me that having flu-like symptoms after transfusion is quite normal and not serious unless there are some severe and significant complications with it. Unfortunately, I have indeed experienced nausea and severe hot and cold spells on Thursday and today (Friday). I keep the electric blanket close at hand and there have been occasions of sitting shirtless on the front porch and laying on the floor with a bag of frozen broccoli under the back of my neck.

So today I’m moving fairly little and when I do it is slow. But I have definitely noticed significant improvement in the ability to walk up the stairs or the small side hill (plyo hill) of our house without a bit of breathlessness.

Yesterday a thoughtful friend dropped off a full array of Smartwool under-clothes. These are wonderful. I don’t understand how it works but for my situation it is almost like magic as compared to standard cotton.

[Sorry if Smartwool pops up in everyone’s sidebar. Well, you will not be let down if you do go with it ; ))

Lastly, thank you again for all of the prayers and tremendous support. Just know that Amy and I feel so loved and cared for and not at all alone in this. This is invaluable. Literally priceless. I understand that not all of you ascribe to the same beliefs or go to church, but this is absolutely the church at work. The church is not a building, bricks, stained glass and nice hedges. In my position you tend to have clarity on a number of things. You just do. And it’s truly difficult for me to see it any other way.

Thank you for reading.

Bob G

 

Round 2…

3/8/2020

Tomorrow begins the second 2-week cycle of chemotherapy. At the advice of the specialist at John Hopkins, the formula changes. A third drug will be added and the two original drugs will be lowered to a small extent.

The actual treatment day is a long boring sit. I read, listen to podcasts, sometimes text, and eventually nap. After 6 – 7 hours as a patient in one large room of an oncology facility, it’s odd driving home and entering back, thankfully, into a home as a somewhat normal citizen.

Over the first two weeks of treatment, the side effects hit around 36 hours later. To this point, thankfully, they have been moderately unpleasant but not severe. I do sometimes worry about the severity of side effects to come when we add a third even stronger drug to what I’m told is already a strong mix. First there is the issue of maintaining a certain level of white and red blood cells. The chemo drugs are never a friend to these guys. The nausea, funky aftertastes, dry mouth, ear ringing, feet numbness (but wait, there’s more… that I won’t mention!! ; ) ) to this point have all been uncomfortable but manageable. How much will it increase? Are the effects cumulative over time?

So there’s a nice useless bundle of “What ifs” and “Now what’s.” Please do pray for me in the way of the actual side effects as well as simply taking it as it comes. I recently read that God gives us grace and strength for today and not for what we imagine may happen tomorrow or next Thursday.

I have always loved where it is recorded that Jesus said “…do not worry about tomorrow, for tomorrow can worry about itself. Each day has enough trouble of it’s own.”

How refreshing and honest!

Also this! After getting over the late side effects of the blood transfusion, I physically had three great days (relative to the previous 6-8 weeks). I slept well, ate well, and ventured out of the house into the sunlight, all with minimal discomfort. The “It’s Always Something” did not apply and for that I’m so thankful. I will absolutely look to these days to help carry me through any rough days to come.

Thank you for reading and praying.

Round two…

FIGHT!!!

 

Uncertainty – Clarity

3/14/2020

Quite honestly, it was a rough week. I do not intend to share every detail of my entire journey here, but I do need to report the good with the bad.

I’m not certain exactly why I again felt more nauseous, fatigued, and flat, with the absolute opposite of an “appetite.” But I believe this is the nature of chemotherapy. It was only a few days but unfortunately some further weight loss is obvious.

It’s good for me to keep in mind that if the chemo is hard on any of my “good” cells, it more than likely is doing a number on the cancer. And that is the bottom line.

The oncology office had to shift my appointment to Tuesday due to a first-time-ever hardware malfunction in their lab. They were no happier about this than I was. At least it gave me the beautiful Monday to enjoy time with Amy and the kids outside. But it also left me with only one day of recover from chemo before the scheduled biopsy on Thursday. After chemo, the nurses always instruct you to make sure and drink a lot of fluids. For the biopsy, you’re instructed to drink nothing before the procedure. This, along with far overdone anesthesia given immediately before the biopsy, may be to blame.

The anesthesia part is my conjecture. But I spent Thursday evening and much of Friday sitting completely groggy headed with worse nausea.

And then…Covid-19. Just like you, I watch the news and hear some things, and later log onto social media for mostly entertainment, something to do, and see many more things.

Critical thinking…

I’m significantly immunocompromised and mostly confined to my living room and open spaces. Do you think that I wasn’t greatly looking forward to the March Madness Tournament? That I’m not bummed regarding my kids spring soccer season being delayed, likely for a while? When athletes that I rehab and train all fall and winter FINALLY have the opportunity to go out and compete, I love keeping up with them. It is like Christmas morning to me!

Late winter and early spring is a time to reflect and pray in the spirit of Lent. In the past I never had the extra capacity to follow these and other spring occasions to the extent I had hoped. But this year, they would help me pass some rough days!

Nope.

And I’m glad.

Of course Covid-19 has become controversial. In my position, again, you have clarity. At the very least, you have to admit that things are uncertain. You want to help Bob fight? Anything that you can do, even for a little while, to help the spread of this to stop, or at least slow, is worth it when you’re in my position. For my friends and neighbors and kids who I love to see, to not bring this into our home and cause us another trip to the hospital.

I don’t know all the facts. But if you saw what my “fighter cell” numbers looked like…I’m told that for people like me that has the potential to be the last one.

Please excuse me if any of this sounds alarmist or unreasonable. It is absolutely a state of mind.

“Let your reasonableness be known to everyone. The Lord is at hand; [6] do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. [7] And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

(Philippians 4:5-7)

With Love,

Bob G

 

The 1-2 Combo; A Lament.

3/22/2020

Hello! I’m sorry for the lack of updates.

I’ve been doing okay, usually feeling like I don’t have much important to say. This week was better than last week, but pretty much…-meh-. That’s sums up how it is so far when I’m recovering from Monday’s chemotherapy. Again, it’s allegedly a strong dose for a (somewhat) young man to fight off an aggressive cancer. It’s worth it. I’m thankful to not be flat on my back. I can take care of my own hygiene, read, and sometimes help around the house and take short walks outdoors.

People think that I was in good health and strong, key emphasis on the word was. A while before finally seeking medical help, I started to dread the twice per week workouts with a few friends, that I previously looked forward to restoring me physically and mentally. I cut work hours back 20%, then 50%, then fully. This was the state I was in even before treatment, quite diminished, puzzled, terrible results on blood profile, and yes, scared when I finally got a diagnosis.

I’m now one month into treatment, with no clear end in sight. [I meet with the specialist at Johns Hopkins on Monday morning to review a second biopsy. This, with a few other more recent tests, will hopefully provide some idea of a plan for the intermediate term.] I eat as much and often as I can without feeling miserable. I stand up (but not enough) to interrupt my nearly constant slumped chair and couch sitting in order to give my hips, spine, and shoulders, a gentle battle against gravity. I walk with Amy and Luna, and sometimes carry a single 20-lb dumbbell, alternating right and left arms in the hopes that my bony shoulders and scapula will eventually protrude less through my now oversized shirts. Sometimes when I’m not feeling good, I sit with my eyes closed, listen to the birds outside, and hope for sleep.

Make no mistake about it, the treatment emphasis for the foreseeable future will be the sucky but absolutely necessary “tear down” mode. Catabolic, for the physiology nerds. Bad cells, good cells that turn over rapidly such as the fighter immunity cells, everything must go. With all relevant markers and various concerns to think about, I care very little that I’ve began to lose hair.

…Jab, Jab…Cross.

Covid-19 comes along as if we didn’t have enough to deal with in an immunocompromised position. I’m not in a paranoia over this, but absolutely do need to heed the warnings and use extra precaution. So nobody comes over, and nobody leaves. Nobody leaves is a rough policy when that includes 5 active kids. We call upon local friends to do our bidding when we need something from the grocery store.

The flip side is that this social isolation would be great (?) if I could take the kids hiking, fishing, out to the soccer field and simply ship them out from here at times in order to have some quiet. It would fly if I could work from home, paint the living room, exercise, or any number of projects that need to be done around here. But there will be none of that, as this is not a wise or currently doable part of this stage of recovery. I do not feel bad about resting in any way. But I do often wish that I could do more!

I hope you knew that right now, I’m unable to ramble on in lament and then leave it hanging that way. This is simply not in my DNA; in my God-given design. It is quite literally the grace of God on me in this moment. I claim to be a realist. I have great difficulty accepting the claims of overconfident faith healers and deniers of the nature of this broken world that we live in.

But I also think that a single human life is much more than a statistic. I know better than to trust only that which is measurable, predictable, and reproducible.

I believe that the nature of God is far beyond hard science. Much about a single person is neither predictable or reproducible, much less God.

So friends, please continue to pray for the family and I, fully knowing that some prayers will be answered in the way we hoped, while others may not. In the mean time, I am praying and absolutely seeing a transition to a building up phase in the future. For some reason, this vision usually involves my bare feet being active with friends and family, in grass and in sand.

I will gladly endure the…catabolic… tests and treatments that stand between now and running around barefoot. I want to live and truly desire to give God the glory for every good thing that has came into and out of this life.

Thank you for reading.

“For as he thinks in his heart, so he is.” -Proverbs 23

With Love,

Bob

 

Better News Than Yesterday

3/25/2020

I feel a moderate vertigo when doctors contact me by phone or text asking “Can you meet today?” They have all been so generous and helpful. I address some of them by their first name and absolutely call them a friend. These docs have invested in me, above and beyond, in ways that I cannot begin to describe.

But based on past experience, it is hard to hear that any of them would want to meet TODAY.

At around 10:50, Dr. Azad (the specialist at Johns Hopkins), reaches out asking if we could do another video conference at noon.

“Yes, see you then.”

Dr. Azad has great bedside manner but so far has maintained a fairly flat affect. I’m sure that experience has taught her this as well. The room stopped floating when her face popped up on the screen…smiling!

She said that Mondays appointment was based on comparing a CT scan to a PET scan, which makes it difficult to compare change over time. Their team missed that I did have a CT scan in late January. Having this original report and imaging, she could glean a lot more comparing “apples to apples.”

Most of the major masses have shrunk 15 to 20%. Some of the smaller peripheral ones are now barely noticeable. Dr. Azad said that this is great progress given a month of treatment that did not begin until three weeks after the first scan.

We are grateful here, to say the least.
Thank you again for reading.

With Love,

Bob G

The Thick of It

4/4/2020

This week, the days after chemotherapy were rough. The pattern of when side effects hit, when they lighten, and the intensity of some of the symptoms seem to be progressive week-to-week. Previously through the cycle, I began to feel decent on Thursday, then Friday. I wait for Friday like someone who hates their 9-5 job. This week, Friday did not come until Saturday.

The weekdays held plenty of staring out the window and trying to nap and being short with the kids during homeschool. Evenings are filled with falling half asleep trying to watch Vikings, Stranger Things, and two entire seasons of River Monsters. The doc says this is expected. I’m no expert, but I think this is at least a start of being in the thick of it.

This morning after eating a lot of protein (powder) laced baked oatmeal and feeling okay, I was itching to do…anything. I tried a little time outside with the kids, small-time bike maintenance, and some light house cleaning. It felt good to move. For a while. Maybe about 90 minutes. Then it felt really good to sit again.

The side effect are light today, and hopefully tomorrow, before going back for more on Monday. But they never fully diminish, even on better days. In reality, these “good” days and the days in the thick of it truly could be far, far worse. For this I’m truly thankful. Thinking about another week of treatment simply is not good for me. But praying is.

Gods grace is sufficient for TODAY.

It does help to remember that the other option is not okay. What else are you going to do? Roll over and let it take you? Knowing that the treatment thus far has proven to be EFFECTIVE is huge. I can eagerly take the oversized blue chair as the oncology nurses prepare the IV.

[Saying to myself.] “Don’t forget the second scan showing that most of the metastases shrunk measurably. It wasn’t long ago that you wrote about it.”

It is true that ALL of me has physically diminished 20%, and my feet are still numb, skin is dry and dark like having a summer tan, and my wedding ring slipped off my bonier finger again while doing dishes (not down the drain ; )), and…, …, But the stray cells are diminishing. The rest we can hopefully, in time, restore!

It is a difficult situation to REALLY care about something and have no control over it. But control is always elusive, unhelpful to all involved. I’ve been there plenty. And nobody can control my outcome, even from 6 feet or 6 inches away.

Gods grace and Amy’s hustle, naps, Zofran, a team of friends supporting the entire family, and a whole lot of prayer near and far will help me through the next weeks and months. We appreciate you.

Thank you for reading, family and friends.

With Love,

Bob G

 

Quarantine

4/9/2020

Hi guys! There’s not much to update this week, which has been similar to the previous one.

There is a stretch of this 3-week chemotherapy cycle where I feel fairly cruddy for 10 of 12 days, knocked back into the woods just when I begin to climb out. Again, the side effects and my ability to function could be far worse and I’ve much to be thankful for. Knowing that the treatment has thus far been effective is highly encouraging.

Coronavirus? It’s probably hard to imagine that this blight has not substantially changed my daily routine. With this diagnosis came a drastic head start regarding having an uncertain future and a few dozen other major concerns that most of us now have to think about.

This virus will undoubtedly affect us all. I have concern for my family and friends catching it. I have kids with cabin fever, yearning for their friends and activities. I feel bad that Amy can’t get out for a quiet cup of coffee with friends. I feel awful for and mourn with those who will feel economic effects of this long after it has passed, and especially for those who already have lost their jobs and loved ones.

But this pandemic has had little effect on my today.

School at home is no different than any other year. Amy does the organization and brunt of the work, and now I spend some of the morning helping her. As far as visits, Zoom, Facetime and such, most of the time, I prefer they be brief and at a distance. For the most part, I want to give the other six people here what little time and attention I have in reserve.

Imagine being on self lockdown, two out of three weeks with little capacity or desire to do much of anything. You don’t even look forward to meals or snacks although great food is literally brought to your doorstep. You eat when “it’s time.” There are no quarantine hikes, no shopping, fishing or mountain bike or camping trips. There are no house projects and no productive character- or skill activities organized for the kiddos. Most evenings I usually don’t even feel like playing UNO. I sit and pray, watch TV and read, sleep and take medication.

I do not want this to come across as being in despair or upset. That’s not at all the case. Some days I carry 20 or 35lbs around the house and do some light yard work. Other days I call a 10-minute walk a “workout.” This is not me. It’s simply the state of being when in the thick of it, just trying to do what you need to do, and waiting, Lord willing, for it to pass.

Amy and I are so grateful for your care, prayer, and simply being there. It absolutely does help me to endure. So many of you generously helping my family with your time and resources has enabled us to walk through this with so much less…weight on our shoulders. The funds raised by the Go Fund Me campaign still puts us in shock, and reading over the names and comments often brings tears. This has been key for us to focus on care, rest, and healing.

Though I cannot do much, I have tried to pray for you and the ways this time is affecting us all.

“In humility value others above yourselves, not looking to your own interests but also to the interests of the others.”

-Letter of Paul to the Philipian church

With Love,

Bob G

 

Not Knowing – Knowing

04/20/2020

Every third Sunday is like the Feast Before the Fight. That’s just a bit dramatic ; ) But that’s when I feel the best before going in for treatment the next morning. I do end up eating a lot for dinner, then trying to eat a little more. Historically, this is the last time that things will taste somewhat normal for at least two weeks.

As of right now, the #helpbobfight Go Fund Me Fundraiser (GoFundMe.com) sits at $99,000.

!!

With some people and families sending through the mail to our home or Full Reps Training Center, the total is already above the goal of $100,000.

This still has not sunk in. I look through the list of donors online and the stack of cards in my desk, and tears. This generous sacrifice …From that client, friend? …When it’s been so long? …From so far away? …That much? …As a friend of my parents? …A friend of a mutual friend?

… … Yeah. Tears happen a lot when I view the donor page.

And you handful of Anonymous making huge donations, I have my suspicions. The next time that I see you in person, I WILL give you an obvious and awkward eye wink. ; )

Meanwhile, the scheduled weekly appointments and diagnostic studies rolled on. A few “bonus” appointments, fun things like a blood transfusion, a second biopsy, and dealing with allergic reaction and other complications popped up. Medical bills, explanation of benefits and authorizations for upcoming procedures and those from 6 weeks ago continued to arrive in the mail almost daily. Ongoing financial support arrived online and in the mail as well.

Also meanwhile…I still don’t know exactly how long current treatment will continue, if and when the protocol may change, or how many imaging studies I will need, much less the actual expenses to come. I do not yet know when or to what extent I can return to work.

But I do know a few things. All of them, I’m told, are major factors in achieving my best medical outcome.

-Through this diagnosis and nine weeks of treatment so far, I’m still physically in the “tearing down” stage. But I’ve grown substantially mentally and spiritually.

-I do not have to fret about sitting around like an old man, missing work, needing Amy to wait on me, or having to lean on so many others to keep the family rolling. Instead, I can rephrase all that to resting, healing, allowing a network of support to lovingly lift us up when we need it.

-Lastly, I know that I do not have to worry about the long term. This is a tuff one for me. God has provided. Even when, especially when you’re knocked down a few (dozen) pegs. It will not be an easy path. But how could it be more obvious, blockhead? [Talking to myself here haha.]

Thank you for your support. You absolutely help me put up a far better fight than I could ever do on my own, or even imagine.

With Love,

Bob G

 

Feels Like

4/21/2020

Back to chemo treatment weeks. The matters listed below are expected, so I’m told. The cosmetic stuff is supposedly temporary, and -should- lift over the course of months to a year following treatment. Those are absolutely small potatoes as compared to other factors.

Some friends and family seek to understand. Why does that happen? In what way is it hard to maintain weight? “How can I help?” “To manage the X, did you try Y?”

This is not at all to make you feel bad, to force some kind of lesson or put things in perspective. Please know that for a few reasons, laying words down on some of the current state of affairs is valuable to me.

For a few days after each treatment, the stuff literally comes out of my tear ducts in the form of those fine morning Mr. Sandman eye crystal that I have not had since childhood. I have recently Q-tipped my ears and now weekly discover what appears somewhat as “wax,” though I have not been out in the dust. What I observe is different, less solid. My face and hands appear slightly more “tan” each week, although I have spent very little time in the sun. My skin is constantly dry and hair frizzled like a different composure.

Getting enough fluids and food is a chore right when I need it most. Everything tastes contaminated and even slightly sweet items taste plain awful. A bite of ice cream, even the best of the best (Brusters) gives me the “first ever shot of whisky” face. X [

This changes. What is slightly good or even tolerable weeks ago may suddenly become gross. We stock up on a food or drink, then it turns on me. “Hello darkness my good friend.” It’s like feeding a toddler. ; ) Amy says this reminds her of every first and second trimester.

Eating too little or often gives the “low blood sugar” feeling. The real frailty and weakness acutely worsens. Especially in the evenings, this also increases the nausea and causes “brain fog.” I notice myself thinking and speaking at a different tone and pace, like split personality.

When I do manage something substantial (like an actual meal that includes meat and veggies) while under the influence of recent chemo, I feel stuffed. More veggies hold little calories, which I need, and seem to take 12 hours to move past my trachea. The digestive system feels inert. Everything feels inert. The nick in my hand that occurred while fixing a kitchen cabinet six weeks ago still hasn’t healed completely over.

It’s mostly fairly acute, as in, I do start to come out of this by the weekend and in my weeks off treatment. And Lord willing there will be a longer-term recovery, rebuilding phase!