Being Patient

My Cancer Journey: Closure

Posted on by kwundrow

I finished treatments three weeks ago and have been slowly healing from the damages done by both the tumor and the ensuing treatments. Cancer is the combination of the two and it has left me changed. It would have been strange had it not. Some of those changes are physical. There will be side effects that linger.

There is also the emotional change. I have come through a battle and won. I am very aware how lucky that is. I think of so many who fight this battle valiantly only to lose in the end. That aspect leaves a sense of guilt whenever I talk about MY cancer. I know all the reasons that is foolish, but it is real, nonetheless.

A more positive change is a new respect for life. I will be more conscious of my body as I continue to heal and especially as I regain my weight. I will relish the flavor of food as I regain my sense of taste. Above all, I will forever be thankful for the army of people, medical, friends, and family, who helped out, supplied us with food, prayed for, and cared about Deb and I through this journey. I might of survived without it, Deb says no, but I certainly survived better with all of those thoughts and prayers for recovery.

The biggest change of all is that I have grown closer to Deb. Through this battle she was there by my side. She kept the records, got me to my treatments, and encouraged me every step of the way. She provided the nourishment, physical and emotional, that I needed to fight through to this point.

Cancer has changed me. I am committed to making that a positive.

After writing this, I felt it needed an addendum. Throughout this process, I have often been graciously credited with courage. From the moment of my diagnosis, I knew my cancer was going to require a rough treatment regimen, but I also knew it was curable. Courage should be reserved for those who do not get that same diagnosis. They fight the battle not knowing whether they will get a cure let alone even survive. That battle is courageous. Knowing I could get a cure if I just withstood the treatments, only required an act of bravery. I am thankful for that and will forever respect the courage of others facing their battle with cancer.

My Cancer Journey: Back in the World

Posted on by kwundrow

After what seems like forever, I ventured out today. And it was glorious. I didn’t even notice the near zero temperatures. All I felt was free. Though it will be ten long weeks before my PET and CT scans tell me if the tumor is gone, I at least got the all clear to go back to normal. And normal feels great!

My last treatment was two weeks ago and yesterday I learned that my labs had shown marked improvement. My white cells, platelets, and neutrophils had all bounced back. That meant, with my resistance returned, I could once again be safe around people. I love my wife and I know she loves me, but after 100 days of being each other’s only company, it would be great to be with other people. Though there are some side effects of the radiation still lingering, I am feeling well enough and ready to attack that bucket list I had built.

First up, breakfast at one of our favorite coffee shops, Lazy Janes. Sitting upstairs at our favorite corner table, savoring my first cafe meal in three months, sipping a cup of coffee, and perusing a real newspaper, well, it was nirvana. Next stop, and no judgement here, the grocery store.

For any of my readers who remember Adventures in Grocery Shopping, (https://kenismsblog.com/?s=Adventures+in+Grocery+Shopping), grocery stores were not my strong suit. But today, being in the grocery store and seeing all those food choices was like a visit to heaven. Pizza, whipped cream, pumpkin pie, and chocolate; chocolate milk, chocolate ice cream, chocolate candy! All those flavors the cancer treatments had denied me the ability to taste, lined up on the shelves. Oh, it was a treat. I was back baby. I went for milk and came home with a shopping cart of food.

There is one thing I know now, things will be different going forward. Oh, life will go back to normal; I will go out to eat, take in a movie, go shopping, go work out at a gym. Normal stuff, but some things will change. I will be more attentive to Deb. I will tell her I love her every day. I will savor travel even more than I might have. I will relish in a dinner out with friends. I will listen more and talk less. Above all, I will try to show kindness. I think I’ve always been a kind person, but I will be more attentive now. I will smile more, I will open more doors, I will be deliberately kinder.

Cancer is a journey. It takes you down to your lowest points. It tests your will and scares you to death. It reminds you that you are, after all, human. But I have survived. I’ve lost a lot of weight and I will have to work hard to get that back, but I know I can now. And that’s the other piece, cancer teaches you that with the support and prayers of friends, you can survive. With the right attitude, you will even thrive.

And so begins the next leg of the journey ……. life as a survivor.

My Cancer Journey: Finally, Maybe

Posted on by kwundrow

It has been a full week since I had my last treatment. I rang the bell. I celebrated the end of that phase of the journey. Then began the healing. I am being patient, well as patient as one can be when trying to defeat cancer. The healing has been slow. So slow that I couldn’t sense it. I still visit the clinic three times a week for transfusions. Those transfusions are aimed at helping me rebuild my strength and weight. Without assistance, eating has remained tough. The painful condition of my throat, due to all those radiation treatments, makes it difficult. Yet even though the healing has been slow, it has been happening. My weight has come up and I have started to add thicker foods to my diet.

This morning has been the best start to a day since the healing phase began. I will spare you the details of what that routine has been like and just say that it was easier. For the first time in a week I am ready to declare that this day is better. It is clearly better than yesterday. It is definitely better than two days ago. Let’s just say it is different and I’ll take it.

I’ve been told to look for the light at the end of the tunnel. Until today, that light has been faint—more an idea than a promise. I’m not ready to declare victory or say “mission accomplished,” but I am closer. For the first time, that light feels brighter. It even feels nearer. I sense that this final phase is approaching its end, that this long journey will soon be behind me. I remain optimistic—but now, for the first time, I’m also more confident. And that feels new.

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: 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.

My Cancer Journey: Chemo Holiday

Posted on by kwundrow

T – 12 and holding. The title really says it all. Yesterday, I was graciously given a pass for chemo session five. That’s the good news. The problem is that I still have to get the last three in. The holiday is not really because of Christmas but that would have been nice. The real reason is low counts across the board. The holiday is so that I can get my counts to rebound and for me to gain some weight back.

If it wasn’t for the taste thing, Christmas brunch and dinner would certainly take care of the weight thing. But this Christmas I will have to deal with looking at food that just two months ago would have irresistible. It is what it is though and I will need to find my way through the food maze. At least I will be surrounded by family and that will be enough to lift my spirits.

Merry Christmas to all of my readers. Please take a second somewhere during this holiday season and say a little prayer for any and all who might be suffering their cancer journey. Believe me, they can feel the energy it sends.

My Cancer Journey: Somethings Not Right Here

Posted on by kwundrow

T – 14 and counting

Four weeks in, with still 14 days to go. The good news is I get Christmas Eve and Christmas Day off next week, and I may even get out of one chemo treatment. I’m almost giddy thinking about it—though maybe that’s just the weight loss making me feel lighter. I’m officially back to the weight I was when they issued those old drinking IDs. Remember those? If not, you really missed out on a strange little era of draft cards and drinking licenses. Mine was worn thin from how often I had to pull it out. Anyway… I started treatment at 180 pounds. This morning I was 167. Quite the weight-loss program.

There are reasons cancer treatment takes the pounds off. Part of it is the tumor just wearing me down. Part of it is my throat not exactly loving the idea of swallowing food—more on that in a minute. But honestly, the biggest problem is taste. You don’t realize how much taste matters until it disappears.

When we enjoy food, it’s never just one sense. We see it first and remember what it should taste like. Then we smell it, and that makes us even more excited. Sometimes we even feel it—like a hot dog in a bun—before we finally get to that first bite. And when the taste matches or beats our expectations, it’s wonderful. When it doesn’t, everything falls apart pretty quickly.

Now picture your favorite pie. It looks amazing. It smells perfect. You’re ready for that first bite. For me, it’s pumpkin pie with a generous pile of whipped cream. That first bite is everything I hoped for—warm, creamy, delicious. Then I take a second bite… and suddenly it’s like a completely different pie. It tastes old, wrong, almost spoiled. It’s so awful I push the plate away and try not to give that bite back the way it came.

That’s what treatment has done to my taste buds. It isn’t really the tumor or pain that’s caused the big weight loss—it’s the fact that food just doesn’t taste right anymore. So now I’m living on things like cream of wheat and oatmeal. Bland foods, little expectation, fewer disappointments. I miss my favorites—pie, desserts, chocolate. And the hardest part is the food friends have lovingly brought us. Their hearts are in every dish. Many of them are proud of these meals, and I wish I could enjoy them the way they hoped I would. But most of the time I barely make it past a first bite. I worry it makes me look rude, but it’s just the reality right now.

So that’s my confession. I appreciate every gesture. Truly. I just can’t eat most of it. If there’s one upside, I probably did need to lose a few pounds—the tumor just got a little too enthusiastic about it. And when all of this is over and my taste finally returns, we’ll have a freezer full of meals waiting for me.

My Cancer Journey: Shrinkage is Good

Posted on by kwundrow

T- 17 and halfway point reached. Today we had both chemo and radiation treatments. This meant we were able to speak with both doctors in charge of my treatment and the take away, is good news. At the very least that is what Deb and I heard.

The tumor has started to shrink, which has ramifications for what’s next. Radiology will reset their markers and be able to focus the radiation away from the muscles of my tongue. This could mean a lessening of the pain I endure when I try to swallow anything I eat. Because the magnesium pill I take is very difficult to swallow, the radiologist recommended getting my magnesium through gummies. He has also okayed, almost recommended, switching to THC gummies to get the added benefit of increased appetite and some relief to my now long gone taste. That recommendation has not been completely accepted by my head nurse, Deb, but we’re working on it.

On the oncology side, we are being given a chemo holiday next week, perfect timing there, due in part to my platelet count dropping below the threshold for safe administering of chemo. Still, the good news is that we may only need one more session of chemo even with the one-week skip.

This is good news and it leads me to the first of my cancer treatment rules. For fans of HGTV, you may recognize my shameless use of the “Vacation House Rules” program.

Rule #1.  Find your support team

The temptation is to keep everything to yourself and just go it alone. This is a mistake. People want to feel useful when you get handed this crappy diagnosis. To deny them that chance isn’t fair to them and you. On top of that, you will be wasting a valuable and well-deserved side benefit. Don’t suffer alone, drag your friends in. I was kidding there. Ironically, they will thank you later for honoring them with the chance to show they really care. Now who doesn’t want that feeling? It’s a win win situation and when you have cancer take all the wins you can. Which leads me to my next cancer treatment rules.

Rule #2. Attitude is everything

You weren’t looking for this gift of cancer, but you also can’t walk away from it. The first thing that goes is your whole outlook on everything. That is to be understood. There is a boat load of hard work, discomfort, to put it lightly, and a tsunami of information appointments coming at you. Attitude is critical now. You can give into your cancer, or you can start finding a way through this. You do just that, if you look for the positives. The team of clinicians and doctors assigned to you will do everything they can to fight your cancer. There are even doctors on your team that  to guide you through that maze that the whole protocol created. Lean on friends, see Rule #1, and take each day as it comes. Find the reasons to smile, something worked, something felt a little better, or you just reconnected with a friend who found out you were in need. The little things matter. And that leads me to cancer treatment rule three.

Rule #3. Put in the work

Don’t let anyone tell you this will be easy. It won’t be. Cancer needs to be beaten, not ignored, not taken for granted, and certainly not coddled. You have to do the work. If you have to get up early every day to drive in to the clinic, don’t make your partner drag you out of bed. When they lay out the treatment schedule, get a handle on it. Prepare ahead mentally for what that day will bring. Being ready is good for you and the team. If this whole journey is going to end successfully, it is the effort you put in that will get it there. Prescription is half the battle. You still need to take the medicine. And that leads me to my final rule.

Rule #4. Follow the plan

Cancer is a team sport. Your team has multiple members. Your quarterbacks: the doctors, your running backs: the nurses, your offensive line: your friends and family keeping you safe through the process, your center: this is your most trusted partner, the person who will take charge of the battle at home. This team will collectively lay out a plan for tackling your cancer.  You need to trust these people to have your best interest at heart and because you trust them, follow the plan. There will be days when you might not want to do what’s being prescribed, but if it’s part of the plan, do the work. You are going to beat this. That’s part of the plan.

Deb and I got good news today. I can tell you that it is in no small part due to these four rules. My fight isn’t done but my attitude, my team, and the plan are getting it done. Tomorrow is day seventeen. Bring it on.

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!