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.

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.

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.