All Story Telling

These pages will reflect the art of story telling and may involve my family stories as well as history and travel. They are a hodgepodge of topics with antidotal comments, but always involve the attributes of a good story.

My Cancer Journey: Ringing the Bell

Posted on by kwundrow

When this journey began back in October, I set a goal. I was going to ring the bell. But to earn that I had to face what lay ahead. Thirty three times I would lay down on that table and be hit with radiation. That radiation would be targeted at my tongue and throat. Included in the protocol would be as many chemo treatments as my body can handle. Though I was warned how hard that treatment would be, I had my goal.

As the number of radiation treatments piled up, my condition deteriorated. Eventually chemo was no longer an option. We would have to settle for only four of the seven treatments they had planned. Next hurdle was my ability to get down enough calories without going to a feeding tube. Though definitely the most difficult part of the journey, I cleared that hurdle. Yesterday, I crossed off the thirty-third radiation treatment, walked out of the room, and rang the bell. I wasn’t there alone. My radiation team, my two daughters, my wife, and even my two grand-kids joined with me as I rang it. And then when I rang it again!

As I stood there at the finish line, I knew I had not accomplished this on my own. The support of my family was always there. When I grew weak, they grew stronger in their commitment to keeping me going. When I reached out in this blog, you the readers, gave me strength through your messages and prayers. If it had been possible, I would have invited you all to the ringing.

I want to say that ringing the bell signified that it was all over. That it meant a clean bill of health. That crossing the finish line meant the tumor was gone. The truth is that getting to ring the bell marked the end of the first half of the journey. The healing process now lies ahead. These next two weeks will be the hardest. My body is weak. I am fatigued and still plagued with the aftermath of all that radiation. Healing will start, but slowly. Never the less, yesterday WAS significant. I can start to look ahead. The true finish line will be crossed three months from now. I will take that long to heal to the point where they can take another CT scan. My hope, my belief, my prayer, is that CT scan will show the tumor gone. I will be a cancer survivor!

Yesterday WAS significant. Tomorrow and every day after are important. Each day will take me one step closer to my final goal. Cancer free!

My Cancer Journey: The Kindness of Neighbors

Posted on by kwundrow

We are entering the home stretch. Treatment will be completed next Friday. As this journey has progressed, I have gotten considerably weaker and have continued to struggle finding enough calories. Many friends and family have offered to help in whatever way we need them, but so far, we have managed. But that ended tonight. I watched Deb spend all afternoon packing away the Christmas decorations while I sat on the couch. I decided I needed to help out and would tackle taking down and storing our rather large artificial Christmas tree. I first had to separate the three sections of the tree. That done, I would have to get them back in the large storage box. There they would lie silent, waiting for next Christmas. I managed the separation part, but half way through the packing away, the room gave way. In a heartbeat, a very rapid heart beat, I found myself on my back on the floor. After a few scary moments, we decided it was time to call in one of those offers. Tom and Judy, our neighbors across the street, was one of our options. Deb put out the call and within minutes they were there. Tom took over the job of storing the tree while Judy, a retired nurse took charge of me. Thankfully, my heart settled down, my pulse strengthened and my blood pressure looked good. We made it through this time.

I am so grateful to live in a neighborhood where any of my neighbors would have responded the same. The same holds true for each and every promise to step in whether or not the opportunity arose. It’s knowing you would is all I need. It alone gives me strength to keep going.

We have reached the point in this journey when everything is tough. Where pain is constant, and just trying is an effort. But we will make it. Deb will keep up the advocacy along with her own journal. I will keep trying. Together we will see this to the end. Tonight, without Tom and Judy, I’m not sure how it would have ended. At the very least, my tree would be lying in state in our living room. Three separate pieces trying to be whole. I have learned a valuable lesson, If people want to help, I really should let them.

My Cancer Journey: Running on Empty

Posted on by kwundrow

We are down to eight radiation / chemo treatments left. Put another way, we are two thirds of the way to the end. But we have run into a hiccup. Last week, our fourth chemo was canceled. The idea was that with time off, my counts would rebound and we would get back at it. Today was supposed to be that “back at it” day. On a typical chemo day, we report early to have blood drawn and a port put in. That port is where the saline and then chemo will be dripped into my body. Next stop, oncology for a consult and then on to radiation. Once I have had that treatment, it is finally time for chemo. Today, that should have been the routine.

So what went wrong? Over the past several days, I was experiencing weight loss coupled with fatigue. My weight began to drop as soon as I started my treatments. At first, my weight loss was gradual. I dropped from 183 pounds to 175 pounds. That was over a four week period. Since then I continued to lose pounds and this morning I weighed in at 162 pounds. Two culprits are at work here. As my tumor is hit with its daily dose of radiation, it becomes pretty raw. Eating is my least favorite thing to do. The second culprit is apparently my bone marrow. It says it does not like the radiation or the chemo and it has taken it out on my platelets. Today’s blood draw came back with low counts on my red and white blood cells. The drop in my platelets was the most pronounced. To do a chemo treatment, our doctor needed that count to be 95. Mine was 12. The only good news for me was that a suspect had been identified and it wasn’t me.

When you are in cancer treatment and things start getting rough, the tendency is to ask questions. You wonder about the actions you are taking. Are they causing things to get rough? Finding out that it was a problem with my bone marrow was a relief. I wasn’t doing anything wrong. I often find myself grabbing onto any piece of news and trying to extract something positive. Today, my weight loss and my platelet count would be worked on. The blocked chemo time would be made up. Today’s chemo was replaced with an infusion of platelets meant to give me a boost. Strange as it seems, I found comfort in that. But then, I’m a little strange when it comes to perspective.

Generational Traditions

Posted on by kwundrow

Christmas may come just once a year, but in all the hurry and busyness leading up to it, it’s easy to lose sight of what it truly means. Across the world, Christmas Day reminds us of the birth of Christ and the hope that entered the world with Him. But to me, Christmas is more than a single date on the calendar—it is a season of the heart. It is a season filled with generosity and kindness, with laughter shared in gatherings and joy found in celebrations. It is the thoughtful exchange of gifts, the comfort of favorite foods and treats, and above all, it is family. It is the blessing of being together, the beauty of connection, and the warmth of a shared family tradition.

When I was growing up, our family tradition was church on Christmas Eve and performing in the children’s presentation of the Christmas Story. After the mandatory delaying tactic visit to my aunt’s home, we would race home to eagerly open our gifts. Empty boxes and piles of wrapping paper later, my brothers and I would retire to coach to watch The Christmas Carol. We would start the movie snuggled in my dad’s arms. Although we didn’t make it to the end of the film, we saw Ebenezer Scrooge begin to change after meeting the three spirits.   Somewhere between the Spirit of the Present and the Spirit of Things yet to Come, sleep would overpower us. Dad would wake us and point us in the direction of our bedroom just as Tiny Tim was uttering his famous line, “God bless us everyone.” Repeated year after year it seeped into my very being. As I grew older, no Christmas was complete without the viewing of The Christmas Carol. When my daughters were born, they were the ones nestled under my arms on the couch and true to tradition, they would never make it to the end. Like my dad, with the movie ending, I would scoop them up and carry them off to their beds.

Through the years my own family has created our version of that tradition from my childhood. Influenced by my dad, my wife and I created our version of that family time during the Christmas season. It started simple with a trip to a movie and a dinner afterward. That first one being Paulie and dinner at TGI Fridays. I still remember watching the snow softly falling as we sat under the glass canopied side table eating dinner. Traditions have that effect of creating memories that are so vivid you remember every aspect of them. Over the years and as our daughters grew, the honoring of the tradition became tickets each year to the theatrical performance of A Christmas Carol. Now grown and parents themselves, they still hold to the core of that tradition, family time together in a Christmas activity. It always includes dressing up, a holdover from the stage performances, and dinner together now all planned by my daughters. Our last one was a stage performance and dinner in Chicago.

Now as the Opa to three grandchildren, the tradition of watching A Christmas Carol is me watching the movie on Christmas Eve as I await the arrival of our children and their families Christmas morn. But know this, it is my goal to follow the tradition with my grandchildren even if I must drag them to the couch, bribe them with treats, and force them to watch. I will let the movie do the rest. God bless them all.

My Cancer Journey: Lost Days

Posted on by kwundrow

T- 19 and on hold for the weekend. My goal with this journal was to both let people know what treatment protocol is like, while also letting friends know how I was doing. The ride after chemo is rough. For the first twenty-four hours after, there is this increase in energy and spirit. That is at least what my experience was after those first three.

With the first two chemo sessions, I experienced a little nausea, but not much else. The chemo session I had on Wednesday was number three. Thursday was the same manic high that I have described before. Then on Friday I got my first look at what might lie ahead. I was down for the count, and nothing was working. Eating was a task because swallowing anything was painful to nearly impossible. My loving caretaker wife, worried about my weight loss, was constantly asking me what food she could make. Honestly, she should have been saying what food can I make you eat. The effort in eating is one thing, the general lack of taste and, with certain foods, the adverse taste, combines to make it undesirable. After radiation, yup, feeling lousy doesn’t get you a pass, the only thing that saved me was sleeping the entire afternoon away.

Today is Saturday, but Deb actually had to convince me of that since my chemo brain had apparently misplaced Friday. Considering how Friday had gone, good move chemo brain. I am feeling much better today, but also two pounds lighter than three days ago.  At this pace, when friends reach out asking if they can see me, I’d have to say maybe, maybe not. It depends on how I’m standing.

I have two days of rest before I mark the next session off my countdown calendar. It will be number fifteen and put one day closer to the end, one day closer to a cure. Everyone around me is trying to keep me positive, but their intent is hard for me to hear. I am in this dark tunnel and the light at the end seems so very far away. But keep the positive messages coming. If I am ever going to crawl out the other end of this tunnel, I need you to keep pushing me.

My Cancer Journey: Mr. Toads Wild Ride

Posted on by kwundrow

T-21. Yesterday, Deb and I have crossed off number “12 “on the cancer calendar my granddaughter Adela made for me. Though I officially began this ride on October 17th, when I was diagnosed with my cancer, the treatment protocol didn’t start until November 24th. With weekend and holiday reprieves from the daily doses, yesterday was day 12 of treatment and what I call Double Tap Wednesdays. If you’ve been reading my journal as it’s grown, you know that I have taken to sometimes, well okay, most of the time give names to the experiences of this trip. I am calling the overall experience My Cancer Journal, while the treatment phase is Mr. Toads Wild Ride, the twenty-four hours following chemo became the Chemo Express, and since Wednesdays are the day of the week when I receive both radiation and chemo, Double Tap Wednesday. Deb worries that I am being a bit cavalier at times, but when going through cancer, the best chance for hope is to remain optimistic.  This requires being able to add a touch of humor. Naming these junctures helps to create opportunities to chuckle.

Yesterday was Double Tap Wednesday. The day technically began at 3:30 am, lying awake in bed contemplating how this cancer has seeped into my life. Abandoning any hope of grabbing any additional sleep, at 5:30 am, I got up, got dressed, and headed out to shovel the two inches of snow that had accumulated on our driveway overnight. Cancer has its way of making you appreciate the little things and moving that powdery white snow around was one of them. The quiet of a predawn morning, the shadows the porchlight cast across the snow, the scrape of the shovel against the concrete driveway, all seemed to offer the peace I couldn’t find in bed this morning.

We arrived at the clinic just before 9:00 am to start what would be another long Wednesday. I check in at the oncology desk greeted by my favorite receptionist. She greets me, as she does every day, with her spirit lifting smile. I do what I always do, I flirt, eventually give her my last name and birthdate, which being my ticket to enter the “long hall walking” door. As the door clicks open, Deb and I begin what feels like “the dead man walking” prison scene from the movies. The walk takes us down three very plain hallways eventually arriving at our destination, the cancer waiting room. The room is full this morning. We are all waiting for the same thing, one more dose of radiation, one more day marked off our countdown calendars. What I tell you I am trying to do each day will come as no surprise to those of you who know me. No one in this room ever talks. They just sit silent, staring at their phones, reading a book, or just staring straight ahead. I try to engage. Don’t we want to talk about our lives, who we are, where we’re from? We don’t need to talk about cancer, just something, anything, and…. It hasn’t happened, at least not yet. I have twenty-one more days to crack this wall of solitude. Wish me luck or beg me to stop. Eventually my name is called, and I tip toe silently from the room. A reprieve for all those who feared I might pick on them to get the room talking.

I am now being led to the radiation room to be zapped. I passed down two more boringly plain rooms before reaching the huge steel door. It is rolled open for now and invites me, if I dare, to step into its little chamber and have a go at Mr. Toads Wild Ride. I am greeted by three operators who will very soon make a dash for the safe side of that big steel door. They help me onto the table and position my head in the hard foam cradle designed to keep me aligned. Next come my tooth guards and then the mask. Calling it a mask doesn’t do it justice. The thing covers me from the top of my head all the way to my midsection. With my head and shoulders now covered by the mask, I both audibly hear and feel the loud pops as the mask is snapped into place and I am trapped. Immovable, I am now ready for Mr. Toad. He is a behemoth and he smiles down at me as the green light comes on and I see my reflection on his mirrored face. Slowly he begins to start his first revolution around me as I lie on his table. For the next fifteen minutes I listen to the faint sound of music in the background as Mr. Toad whirrs and circles my head, all the while zapping my tumor with radiation. Eventually I imagine I hear the big steel door roll open and a smiling attendant looks down at me and tells me we are finished. The mask snaps loose and the ride is over. I am free, that is free to go to the next phase of this day.

When we first arrived at the clinic today, my first stop was at the lab where I was fitted with this lovely port in my arm. That port will come into play during my afternoon chemo procedure. Our next appointment is a consultation with our oncology nurse practitioner. She is evaluating how my treatments are progressing, answering our questions about the same, and after being assured that everything is on track, we head up to the third-floor oncology wing. Here another waiting room awaits us, but this one is much nicer than the waiting room we occupied earlier. This one has comfy seats and spacious windows with views of the clinic’s campus. This is your first sign that chemo will be different than radiation. No less daunting, after all I am about to get two liters of cisplatin, my chemo serving of choice. Cisplatin is basically poison. As my nurse pulls on rubber gloves and protective clothing, it drives that message home. It will work at poisoning the tumor while radiation will battle to shrink it. A powerful team at war inside my throat.

The process of receiving this potent drug is at least comfortable. No strapping me down. We are ushered to a comfortable though small cubicle with an easy chair for me and another sitting area for Deb. We are asked if we’d like any coffee or other beverages and I am even offered snacks. Once I am hooked up and the fluids are draining into me via the port in my arm, I lean back, enjoy my music, and read a book. The whole process will take around two hours during which time I needed to produce 500 ml of pee. I am told to not hold back as I cannot finish the protocol until I fill the quota. In the end, this will take me two trips to successfully pull off. I’m a good pee producer, but not quite MVP one tripper level. And thus, about 3:00 pm, my quota met, the Cisplatin coursing through my kidneys, our stay is complete. We are free to leave the building, until tomorrow of course. Good news, it’s just radiation. Easy day!

My Cancer Journey: Emoji on a Camel

Posted on by kwundrow

I thought I would depart from the heavier and emotional side of this trip through cancer world and lighten it up a bit. And this is a good day to do it. Yesterday was treatment number seven and once a week I get to add chemo to my ride. Though that may seem bad, there is a bizarre benefit. At this point it is only the second one and I am still standing strong. The side effect benefit of chemo, at least for me, is apparently mania, good mania. On days that I have chemo I am rewarded, like the good puppy patient I am, with a return to the nausea pill for the next four days. Why, you ask, is that a good thing. Well, the side effect of that pill is, for lack of a better term, “knock out”. Within ten minutes of taking it, I can look forward to at least three hours of blissful sleep. And it doesn’t stop there; I get a solid three to four after that. My close friends know me well enough to know that sleep and I have not been very good friends. As a result, Chemo yields nausea pills, pills return much needed sleep, and great sleep leads to a manic state the day after. Writing this piece is already me starting the fifth project of my day. Oh, I will get back to possibly finishing the other four I started, but not if another something distracts me. I wrote about my distractibility in a blog called Adventures in Grocery Shopping.  I invite you to give that one a read to better understand how distractable I am.

(https://kenismsblog.com/?s=adventures+in+grocery+shopping).

I wanted to share two signs that might help you better understand what’s going on with someone going through cancer. Remember, these are just two of them. Depending on the patient’s type of cancer and their prospects, they will create different effects. What I explain here is relative to my cancer, one that has a cure promise at the end.

First sign, thirst: Doctors always want to ascertain your threshold of pain with the old scale of 1 to 10. Hats off to those of you who don’t experience any difficulty in determining the difference between a 1 vs a 4 vs a 9. I on the other hand need some visual, but since I can’t see my face when I am dealing with pain, thirst in this case, those little emoji faces aren’t offering much help. And while I am this close, how can you ever say 10. Saying 10 leaves you no room for what might still be coming. I once told my doctor that I was reserving the 10 rating for my tombstone. It would read “That was a 10 and now he’s gone.” My cancer thirst on a scale of one to ten is an emoji seated on a camel in the Sahara Desert. I don’t travel anywhere without a bottle of water these days though I still resist my wife’s request that I carry this gallon jug of water around. Strangely, the thing has a little hook on it leading me to believe I wear it on my belt. And now I am pulling my pants back up from around my ankles. My apology for that visual. On a scale of 1 to 10, where does that image fall? Bottom line is that I am always thirsty, thank God for my wife and her supply of water, Dove Ice Cream Bars, and shakes.

The second trait is focus or the lack of it: Between somepretty good drugs, i.e. the afore mentioned nausea pill and the fact that you have cancer, let’s not forget that sidetrack to life’s railway system, the brain gets a tad foggy. Sentences become a disjointed collection of words, eventually the whole attempt just sliding downhill in an avalanche to end as “sorry, what the hell was I trying to say.” This is the point when I pull out my C Card using it like a hall pass to explain it all away. I do appreciate how forgiving people can be when you drop the C word. Last week I needed work done on my laptop and I found myself talking with this young Geek Squad tech. He had just asked me a simple question about the programs that I used on my laptop. I started to work up my answer when the fog rolled in. After babbling incoherently, fishing for anything that sounded like an answer, I channeled Michael Keaton and his quotable line from the movie Mr Mom, “yeah 220, 221, whatever it takes.”  When I saw his shocked expression, I pulled the C Card pass. I am sure he is still thinking I was really cursed, he’s old AND he’s got cancer. He just gently took the computer, asked for my logon, and said he could take it from there, that and “sure hope you get better.” Total optimism from the kid who would at least save my computer.

This lack of focus keeps me from working on anything for very long. In some cases, we are talking seconds. I move from one room of the house to the next, wondering why I went there, and sometimes which room it is. I find myself staring at my phone with no clue if I was making a call, looking up some incredibly interesting internet fodder, or maybe I just hung up on my daughter’s call. I ask my wife “do you know what I was doing?” She in turn asks me if I had lunch. My answer, “maybe?”  “220, 221, whatever it takes.” “Can I use the C Card again?”

I am starting to come off the mania that has been driving me through this day and I wish I had bottled some of it up for tomorrow. It always seems that these writings end with me at least trying to make a point. It will be some small piece of information, some alternate perception, or maybe just a chance for you to see inside my brain or at least the way I look at things around me. I think this is what I want the takeaway to be. Cancer is a trip, and I mean that in every sense of the word you old hippies. One minute you are up, the next minute looking to crash. If nothing else comes from this overtly long and getting longer blog, I hope you can find some info to help you understand the journey or at least find compassion for that cancer patient you know or just met. I can tell you that there are enough to go around. My little cancer waiting room at the clinic is always full, all waiting for one more dose, one more chance.

At the start of this I said I was keeping it light today. I hope I mixed in just enough humor with just enough storytelling to accomplish that. However, given my focus lately, I am not even sure I finished it. No matter, I’ve still got a hundred ounce jug of H2O distracting me and the emoji on the camel is still wandering in the Sahara.

My Cancer Journey Continues: With a Nod to Stanley Kubrick

Posted on by kwundrow

November 28th

T-29. Today, as I return for radiation dose number four, it is all becoming routine. A few minutes in the waiting room then down the hall and into the “chamber”. I slide unto the table and wiggle my head into the custom headrest. Next comes the mask and as they fit it snuggly around my face, head, and shoulders I hear the snaps lock it in place. At that moment, I feel like an astronaut being prepped for a flight into deep space. I think about playing out that fantasy in my head while the whatever it is, whirrs softly as it circles my head, “Hal …. open the door”. Then fifteen minutes later, I hear the welcome voice of the technician as she reenters the room and let’s me know we are finished. Hal has opened the door. For those of you to young to remember or old enough but never much into sci fi, a shameful nod to “2001 A Space Odyssey.” And so concludes day four of treatment. The next two days are mine to rest and regroup and then it’s back to the routine.

My Cancer Journey: Navigating the Unknown Waters

Posted on by kwundrow

November 7th (There You Are)

People asked me when it started. When did the tumor let me know it was there? If it was trying to let me know it was there, it spoke too quietly, for I never heard it. I had a cold. A little sore throat. When I went to see a doctor, it was to have my hearing checked. That turned into a visit to an earn nose and throat doctor, which led to a CT scan, and then that ominous call requesting me to return to the clinic.

It was Thursday, October 16th, at 1:00 pm. When you hear that the mass they found on the back of your tongue is cancerous, you remember every detail of that day. We walked into the doctor’s office and were told to make ourselves comfortable. As Deb and I waited nervously for what was clearly not shaping up well, we exchanged small talk, trying hard to make everything seem fine. No more than five minutes had passed when there was a soft knock on the door and at once, the doctor and three other clinic staff crowded into the room. I remember how hard Deb was squeezing my hand.

After an introduction that included the ironic question, “How are you doing?,” the verdict was delivered. “The mass we discovered is cancerous.” I was glad I had not answered the question of how you are doing before I actually knew how I was doing. To their credit, the doctor was extremely empathetic all the while convincing us of their confidence in the diagnosis. She assured us almost immediately that it was a highly treatable and very responsive form of cancer. She went as far as to say she could almost guarantee us full cure. As Deb and I absorbed all of this, she went on to describe the process. The treatment for this cancer would need to be a combination of radiation and chemo. There would be a team of different clinicians to get us through it and that it would start as soon as the protocols were in place.

And so, for Deb and me the journey begins. We will need to work together. I will have to do the dirty work, but Deb will do what she has always done. She will keep me honest when I’ll want to be lazy. She will be my medical transcriber when I cannot listen to the details. She will be my support team when I get low. Deb will be my rock because she always is. I do not look forward to what lies ahead, but I do know it’s the only way to come out whole.

November 8th (Time to Fess Up)

This past week started with a battery of tests. I endured a CT scan and an MRI. In addition to those scans, my mask impression was molded. This mask will hold my head in place for the radiation. Tuesday and Wednesday were spent with various doctors and OT people who will comprise my cancer team. These appointments gave me comfort, but they also spelled out the reality of the treatment I will receive, now scheduled for two weeks from today. I am trying to be as positive as possible, but I have been cautioned to prepare for what is ahead. Still, there is always hope that I will avoid the worst side effects.

Today, Bailey let us know that one of Jackson’s teachers has cancer. He is asking them questions about it and Bailey thinks that it is time to tell Jackson and Adela about my cancer. Though dreading the point when we would tell them, I also felt that if we were clear about the outcome, they would react well. To their credit, they managed the conversation well. Though seemingly calm, they were not ready to ask questions, and I am sure that they do not fully grasp what is ahead. The key to the conversation was that they know I will survive but need to be prepared for days when I might not be myself.

November 9th (The Tumor Whispers)
Just some thoughts today. This morning, we went to church, and once again I was struck by the generosity of people—the way they care so deeply for others. I find myself feeling unworthy of the kindness and concern our friends show. I tell them I am fine, and that is true. This cancer does not shout; it only whispers, reminding me quietly that it is there, though it leaves me mostly pain-free.

Still, that quiet presence weighs on me. I find myself anxious, waiting these two weeks for treatment to begin, and wondering—if I feel fine—why I need to do this at all. Ironically, today’s sermon was about living in the moment, or at least that is how I heard it. I am trying to do just that.

But the truth is, this cancer is distracting. It pulls at me whenever I let my guard down, its whisper tugging me away from the moments that matter most—time with my grandchildren, my children, my friends, and especially Deb. For them, I need to be present. I need to keep pushing the cancer aside.

November 11th  (Patient in Waiting)

Treatments are set to begin on the 24th. For now, the waiting is weighing on me and causing anxiety. Though we have been walked through the procedure, introduced to the multiple specialists, and sternly warned of the side effects we need to prepare for, it still seems a huge unknown. My cancer seems almost minor when it is described, but the treatment seems so more than minor. I think it is that we have never been told what would happen without treatment. My assumption is that the tumor would slowly take over my ability to eat and likely my ability to speak. Entertaining the idea of refusing treatment would be selfish and a cowardly act. Thus, I prepare for the chemo and radiation knowing full well it won’t be pleasant. I can only hang onto the possibility that I can skip many of those side effects.

November 13th  (To Eat or Not to Eat)

With treatment still two weeks away, we have already been to countless doctor appointments, with yet another more unpleasant one coming today. I have been warned how much the treatment will impact me and how drained I will feel at the end of them, and yet, it only leaves me confused. How can something that barely impedes my daily life, create such a disruption in Deb’s and my life?  Shouldn’t I be feeling more pain? At the most I am only experiencing some discomfort. It somehow tends to leave me feeling guilty.

Today I will see a doctor about the placement of a feeding tube into my stomach. Though they say it is a precaution, they have been insistent on its need. The thought is unpleasant at best, but I am committed to going through with it. I have to trust the doctors when I am told that at some point it will become necessary. I also do it for Deb. I sense how much she is worried about this aspect of the treatments. If it reduces that fear, then I will get over my psychological resistance and get it done. Just another step in this journey.

November 14th  (Battling Emotions)            

Yesterday’s appointment went well and gave me some clarity that I have been looking for. We went in assuming we would be set up for the feeding tube I dreaded. We left deciding I would wait until and if it became necessary. The doctor was very empathetic and opened the conversation with a question. “How was I feeling about the procedure.” She went on to let us know that her position was not to be preemptive, but rather watchful of where my ability to eat was heading. This was a relief. I now know I can wait without disrupting the treatment and I have a much better visual on what the tube even looked like, i.e., much smaller than I had envisioned. Before we left, she gave me one more piece of advice. I need to stop referring to my cancer as minor. It may be curable with treatment, but it is still cancer, and cancer is not minor. I have been feeling both guilty and selfish, guilty, feeling it doesn’t deserve this attention, and selfish because I do, at some level, like it. I have decided on my answer to the “how are you doing” question; I don’t feel bad enough to be sick, but not well enough to feel good.

November 16th  (Who Turned Up the Volume)

It could be my imagination, or the tumor has become more noticeable. Or it could be something else altogether. I feel more pain in my jaw and right side of my head. Little stabbing pains that linger for a while before they go away. That, or my mind is distracted enough to not notice them. That pain in my or the poke behind my ear. More so, the chicken bone feeling when I have that last bite too many and swallowing starts to hurt. None of these are so big as to deter my activities, but still not small enough to ignore. This tumor simply seems to be speaking a little louder as time goes on and harder to pretend that it’s not there.

November 20th  (Conversations and Revelations)

Today, I received this email from my sister:

These are various affirmations that I read every morning.

I Thought they might resonate for you heading into next week and the weeks ahead.

  1.  “I am the Lord your God, who holds your right hand, and I tell you, “Don’t be afraid. I will help you.”

Isaiah 41:13 NCV

  1. Dear God, I will quit wringing my hands and place them in yours for you to hold and guide me.
  2. Fear is what if……faith is even if
  3. Be brave, be strong, be bad ass

Sending love and hugs and positivity

I replied with this and figured I might as well include it in my journal.

Though I will likely adhere to the first three, I resonate with number four. I have been struggling with two conflicting emotions up to now, guilt and selfishness. I was blaming the guilt on the cancer and the selfishness obviously on me. I have referred to “my cancer” as minor, more or less the “common cold cancer.” The guilt is due to feeling that this is minor, so why all the fuss, so why do I even feel compelled to tell people I have it? The selfishness comes from kind of enjoying the concern and love I get from everyone. One of the multitude of doctors and clinicians involved, actually the one I saw only a few days ago, chastised me for referring to my cancer the way I do. She told me cancer is cancer, yours is fortunately curable. She reminded me that at the end of the day, it’s still cancer and untreated, it would still kill me. This helped, somewhat, I could now get angry at my cancer, but the guilt doesn’t go away. Today, I met with one of the planners I had trained. He survived cancer that he had as a kid. He told me that even all these years later, he still feels guilt any time he speaks with someone about his cancer. Turns out it isn’t about having had cancer, it’s that he survived. At least I have a better perspective on guilt but feeling, even knowing it might never go away. 

I’m not sure why I dumped all this on the beautiful sentiment of your email, but internalizing all of this leaves me wanting to vomit it back out once and a while. I apologize, but you are someone I believe understands me better than any of our other siblings, and I trust you. If one doesn’t want to deal with emotional messes, it is best never to be trusted. 

If you are still reading, I love you and really do appreciate your concern and encouragement, and now I feel selfish.😅 While I am at it, I might as well be bad ass too.

It has been like the, I have my days where things are fine and then this anxiety creeps in. At those junctures, anyone unfortunate to have asked how I feel gets this unloading of my emotions. There is this void between the “How are you?” and the “How do you feel?” version of that question. There is such a big difference between.

November 23 – 24 (It Begins)

T Day! Later this morning I will get the first of my thirty-three days of radiation. Chemo will be introduced on day three and follow one day a week from that point until the end of the cycle.  The fact that it is 1:30 am as I write this, speaks volumes on my ability to sleep lately. It is the unknown that is distracting me and causing the up and downs in my mood. I have been given the list of side effects, but which ones will hit me? How much control will I really have? I tell people I am optimistic, but the reality is that inside I have the dread of the “what ifs.” At least today I will get my first taste, though it will likely be more about how it will go as opposed to what it will do, what it will feel like, how will I react?

On a side note, I write myself notes reminding me of what I am doing and what needs to be done. I seem to be forgetful these days leading up to the treatment. At times I find myself struggling to find the words to just complete a comprehensive thought. I blame this on a combination of the drug I am taking, the distraction of all of this, and likely the tumor itself. It can be frustrating. It is even more frustrating for Deb as it is she who must deal with me daily.

November 24th  (Ramping Up)

When I was diagnosed, the doctors asked me to keep track of the cancer. It was important in their treatment that I keep them informed of my pain types and levels. With treatment starting today, I wanted to look at how things have changed since this all began.

When this cancer first showed up, it was almost unnoticeable. It started with discomfort when I swallowed stickier foods.  Then I began to feel pressure in my ears and problems hearing clearly. I was able to ignore most of it because it was slight and not out of the norm. A cold coming on is what I was thinking. As of the last two weeks, it has become much more noticeable. The episodes of pain are a bit more intense now and more varied in where I am feeling them. The hard ones to ignore are the toothache pain and the increased pressure on my ears.  In short, what started as a whisper is getting louder. It seems like the tumor thought I wasn’t paying attention and is turning up the volume.

November 24th (One Down a Lot to Go)    

Relief! At least it was a relief of sorts. Treatment went well and I now know what it entails. Other than a very confined 20 minutes on a scan table, it was tolerable. We met with Doctor Burr after the procedure and as he answered our questions we began to feel a lot better about the prognosis. My biggest concern was the pain I am currently experiencing, especially the sharp tooth-like pain in my jaw. He assured us that it was indeed the tumor referring pain to the nerves in my jaw. That tumor was also causing the pressure pain in my ears; the reason I had come in before the tumor was even discovered. Dr Burr then walked us through the upcoming weeks and the pain management and protocol they would be administering. We left with a much more hopeful outlook and that is a relief.

November 25th  (Strap Me In Scotty)

T-31 and counting. I had barely sat down in the waiting room, when I was taken to the radiation room. I know this will become routine, but for now it is still a strange process. I climb up on the table, laying my head back in the special head rest, molded to perfectly fit the back of my head. Next comes the mask. It was created from a sheet of plastic form fitted around my face, head, and shoulders. The thing looks like a huge Freddy Krueger mask. Quite attractive. The mask is then placed over my head and snapped to the table. I am now locked in place and will spend the next 15 minutes being dosed with radiation. As I lay there, I visualize the radiation burning through the tumor. At some point, I begin to imagine that I can actually feel it.

I find it strange. I have been conditioned to think of radiation as deadly. There are these images of Chernobyl, Japan, and Three Mile Island, none of them comforting. Yet here I am, soaking up radiation every day for the next eight weeks and that’s a good thing. Science and technology are incredible. True, as long as I don’t end up glowing in the dark.

November 26th  (Stir in Some Poison)

T-30 and holding for a day. Only fitting that on a cold, windy, and snowy day, I get my first round of chemo. As I take my seat in the cancer waiting room I can’t help but look around the room at the people waiting this morning to get their chemo treatment. I have a deep sense of sadness and worry about the ones that, who unlike me with the “good” cancer, are fighting through a cancer that doesn’t always have the desired outcome. Strangely enough, in that same sense of sadness comes this feeling of brotherhood. We are all members of the same group, “The Cancer Club.” I look forward to more times of hearing the bell and knowing that another  member of our club, has been accepted to “The Survivors” club.

Yesterday I referred to the strangeness of being dosed with radiation. If it were not controlled and laser focused on the target, it would be, in any other setting, lethal. Today, they added poison to the cocktail. As I watch, the nurse puts on a protective gown and then hangs a double bagged serving of the chemo to my intravenous pole. She is cautious with good reason. Simply put, chemo is poison. As it drips in, I am again amazed at what science has accomplished in the medical fields. Absorbed in nature, too much radiation will kill. If poison gets into the system, it too can kill. But in the hands of my doctors, specialists, and nurses, the only victim of this deadly recipe will be my tumor.

It is only fitting that as tomorrow is Thanksgiving, I have some people to thank. For all the innovators and researchers that develop these cancer protocols, I say thank you. To the doctors who stay on top of all that research to better treat their patients, I thank you. To the nurses who practice skill in their care and understanding in their eyes and their words, You are saviors. To my spouse, Deb, who is always at my side, taking notes, keeping me straight, making me eat, I love you. And last but never more than a silent prayer away, I thank God for providing all of these care givers, guiding the hands of the doctors, inspiring the researchers, and for being in this with Deb and I.

November 28th (Nod to Stanley Kubrick)

T-29. Today, as I return for radiation dose number four, it is all becoming routine. A few minutes in the waiting room then down the hall and into the “chamber”. I slide unto the table and wiggle my head into the custom headrest. Next comes the mask and as they fit it snuggly around my face, head, and shoulders I hear the snaps lock it in place. At that moment, I feel like an astronaut being prepped for a flight into deep space. I think about playing out that fantasy in my head while the whatever it is, whirrs softly as it circles my head, “Hal …. open the door”. Then fifteen minutes later, I hear the welcome voice of the technician as she reenters the room and let’s me know we are finished. Hal has opened the door. For those of you to young to remember or old enough but never much into sci fi, a shameful nod to “2001 A Space Odyssey.” And so concludes day four of treatment. The next two days are mine to rest and regroup and then it’s back to the routine.

I’ve Got to Follow the Sun

Posted on by kwundrow

Almost from the day my daughter and I made plans to be directly in the path of totality for the solar eclipse that was set to occur during the afternoon hours of April 8th, our nervousness began. At first, it was a long way off and though we hadn’t spent much time considering the weather, it had crossed our mind. But, Bailey and I being Bailey and I, we plowed ahead with our sketchy plans and booked hotel rooms for the entire family in St Louis. It had started out as Bailey and I but we had been so convincing in our enthusiasm that both of my daughters families would be coming as well. We committed to being optimistic and would worry about the weather when it came time to leave.

Soon the eclipse was less than a month off, and the spring weather in the eclipse’s path was not looking good. Every day, we would check multiple weather apps, willing the skies to clear despite the still pessimistic reports. As the weekend approached, there was a glimmer of hope for at least a hazy view. We buoyed our spirits and headed for St. Louis, nine of us in two cars ranging in age from 10 months to, well, my age. We explored St Louis that Saturday and Sunday and then on Monday morning we took off. In Bailey and my original plan, we would have simply chased the path until we found a place to plant ourself under the eclipse, but I had my two son-in-laws along and they could not and would not accept our impulsiveness. With the assistance of Google Maps and the internet, John pinned down our optimum viewing site. Lying dead center on the eclipses path, he had settled on McLeansboro, Illinois. All we needed now was for the clouds to dissipate and then steer clear for the two hours of the event. All our worrying would be settled, one way or the other we were headed to the eclipse. We rolled into town two hours before the eclipse was to begin and after parking in a large fairground, began hauling out the blankets and lawn chairs and prepared ourselves for the astronomical show to begin.

There is something uniquely special about viewing an eclipse, and when you have been fortunate enough, or determined enough, to get directly in the path of totality, it begins the minute you set up. Unless you were viewing it alone, no problem with that, you find yourself in the midst of a crowd of people who are immediately bonding with you over the common quest to be part of something special. You are an “eclipser” and now indoctrinated into your larger family of like minded, spirited, individuals. “Where are you from?” “How far have you traveled?” “Is this your first eclipse?” In the case of my daughters, wife and I, this would be our second. eclipse. We did have two of our grandchildren with us that first time, but at 4 months and three years old, they really didn’t remember anything. Jackson, now ten, states that what ever memories he has are probably the result of all the stories that have been told and retold about that first one. The fact that this would be our second eclipse, elevates us to our new status of eclipse chasers. We get to compare eclipses and talk about where we saw our first one. At this point, with an hour to go before the initial stages of the eclipse, the excitement level is rising. With each passing minute, more cars and their occupants are joining the crowd.

It is 12:54 pm CST and the moon begins its slow and steady transit across the face of the sun. The eclipse has officially begun. We don our eclipse glasses and begin checking on the progress every 5 minutes or so. We begin reminding Jackson and Adela to always put on their glasses when checking progress and when I glance over at Faye, nestled in her dad’s lap, she too has her glasses on.

Eventually the sun is being reduced to a crescent and we are now checking on it regularly. As the hour approaches 2:00, the sky becomes a deepening shade, not dusk, not dark, but rather an almost eerie shadowing that defies my attempt to adequately describe it. The next thing we notice, is the breeze. As the sky begins to darken, and as the air cools, a light breeze descends. The sun, as it eclipses is creating a 360 degree sunset effect. Birds are heading to the trees, confused by what is happening. If the air and the sky is right, you can actually see shadows move across the surface of moon as it slides across the sun, and though we had worried about the clouds or perhaps because we did, the clouds cleared and we are granted perfect viewing conditions.

Suddenly, everyone is on their feet and with 10 seconds to go before totality, the countdown begins. Several hundred people, now family, begin counting it down. As we reach zero, as if the moon and sun heard us, totality! Our eclipse glasses come off and the first thing we see is the corona. It explodes all around the rim of the sun and it takes your breath away. As we look on, we are reminded just how small we are and at the same time, how unique. We can clearly see the beads, as they are called, seeming to move along the edge of the moon, an effect created by rays of the sun shining between the mountains of the moon. No words can come close to describing what you are seeing or what you are feeling. Many of the people I talked to, said they openly wept.

It was at this point something strange happened to me. I should be staring at the eclipse, relishing every second of the four minutes and eight seconds of totality, but instead, after a few seconds of looking up, I looked over. There was my ten year old grandson Jackson and my seven year old granddaughter Adela, leaping out of their lawn chairs, jumping up and down, and shrieking with what can only be described as shear joy. Jackson is screaming, “Holy moly, holy moly! There’s the corona, I can see the corona, and there are the beads and the diamond!!!!”

I savored that moment and then turned my eyes back to the eclipse, staring in awe for the next four minutes. And then it is over. The sun begins to reclaim the sky. I don’t think I will ever know which visual will be the more indelible memory, the total eclipse, or that moment of shear joy I witnessed in my grandchildren. Had I not taken that second to look over at them, I could have missed the priceless moment that made the entire trip, the distance, the time, and the cost all worth it.

We often miss the great opportunities in life because we wouldn’t take the time, we wouldn’t put in the effort, or we just looked the wrong way. The eclipse took my breath away and the image will stay burned in my memory, I will talk about it forever and to whomever would listen, but just as lasting will be the memory of the joy and wonder I saw through my grandchildren’s eyes that April 8th afternoon.

In case you are wondering, next eclipse, 2026 across Spain. I think Jackson and Adela should see Europe and catch a few corona rays. Dear God, I AM an eclipse chaser!!