My Cancer Journey: Back in the World

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

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

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 End is in Sight?

It was two for Tuesday today. After two radiation sessions in one day, they added in a fluids infusion. It was a long day but it also brought me nearer to the end. With these two sessions today, I now have only three radiation treatments remaining. This means that once I walk out of radiation on Friday, I get to RING THE BELL! This is a big deal. I have invited both of my daughters to be there as I celebrate crossing the finish line.

I am not trying to rain on my own parade, but even though I finish treatments, it’s not really over. Those two weeks after that last treatment will be tough. That is the warning they are giving me. My body needs to heal now and my throat has been completely burned by the radiation. The difficulty I have eating and the amount of weight I have lost, will stand in my way. But, I’ve come this far, what’s a couple more weeks? Then there’s the question everyone asks, “will the tumor be gone?” The answer, unfortunately, will have to wait two to three months before they can do a final CT scan. Fingers crossed, the answer will be that it is gone.

This journey has been tough, even tougher than I thought it would be. Through it all, I found my strength in the incredible support I received from friends and family. So many of you prayed for me. Still others sent me periodic messages of strength. A little shout out to my sister and my cousin who sent me daily inspirations. Some of you even took over when I couldn’t do it myself. And then there was my wife, Deb. She never missed a beat. Day in and day out she was there for me. She was my cook, my stenographer, my cheerleader, and my coach. She experimented as we searched for foods and combinations that I would tolerate. She filled notebooks with the advice and directives of our seven doctor team. And when I was down, she left me daily notes of encouragement. I would not have made it this far without that support. You win battles through team efforts. Thank you everyone for all that you have done. Your encouragement and willingness to help was the strength you gave me to see this through. I had a team of doctors but just as important, I had a team of supporters.

Thanks for taking this journey with me. I would never had taken it without you.

My Cancer Journey: The Kindness of Neighbors

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

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

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.

Generational Traditions

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: The New Bucket List

Week four is now behind me and starting tomorrow I will have thirteen sessions of radiation to complete.  Though I am feeling the best I have felt in several days, chemo session number four was rough. My counts are all low now which means I am on house arrest and I am not a happy camper. Missing so many things during the holidays is tough. You can only watch so many Christmas movies before you ache to be with friends during the holidays. With every passing day another party, another get-together, another festivity has to be skipped. I begin to list all the things I am missing. And thus, I present to you my new bucket list:

Lazy Jane’s for breakfast, possibly for days in a row, a steak, medium rare and covered in mushrooms and onions, Culvers North Atlantic Cod dinner, in the restaurant, no mask, a piece of pie, any pie, with whipped cream, lots of whipped cream, a crowded room with people having conversations, going out to a movie, sipping wine on the porch of Wollersheim Winery, trying all of the food samples at Costco and savoring the flavors. Playing with my grandkids, hugging people again, being free. I suspect you understand now that this is not the normal bucket list, but the items are just as inviting as anything on my other bucket list, the one where I stand atop Machu Picchu or maybe the Great Wall of China. If and when my health and taste decide to return, watch out Madison and surrounding areas because I’m coming. I have a lot of catching up to do and I’m hungry, very hungry.