#18 You’ll have to fight
“He who has a why to live for can bear almost any how.” – Nietzsche
I’ll preface this section by saying that sometimes even those fighting with the strongest will to live can still succumb to cancer or disease. Even with all the why in the world, there’s only so much the body can take before it surrenders. This section isn’t to say that those that die weren’t fighting with all their might. Sometimes things are just beyond our control.
With that out of the way, the road through is a road through hell. It is not easy. Some will have it easier than others and others still will be faced with more adversity than most will ever experience in multiple lifetimes.I’ve heard patients say that if they had to do it over, they wouldn’t. I’ve heard some say that if they’d known what they were going to have go through that they wouldn’t have done it. It’s true that cancer kills. According to the American Cancer Society the estimated number of cancer deaths is 608,570 and the estimate for new cancer cases is over 1.8 million people.
I started to experience some of this adversity during my first round of IV chemo vyxeos. I was initially admitted to the hospital to monitor for tumor lysis syndrome. My white blood cell count was over five times what it was supposed to be and the chemo was going to start killing off most of those cells. During the process of that massive amount of cell death it’s difficult for the body to process that much waste. I needed to be carefully monitored for signs of liver or kidney issues related to that much by product being forced out of my body. The chemo did its job and thankfully I showed minimal symptoms of tumor lysis syndrome.
What did happen though was that when my counts dropped low enough I developed a spontaneous fever. I had a fever for ten days. There were days where it was a struggle to get out of bed. I’m a huge proponent of getting out of bed, making the bed, and not getting back in it. I felt like if I were in bed then I wasn’t getting better. The bed was for sleeping and only the sickest. For me during this ten day period, there were many days I never made the bed. There were a few days where even after getting out of bed, I got back in bed. I was trashed. I simply did not have energy for anything. I couldn’t read, I couldn’t watch tv, I was miserable. Nothing could seem to distract me from how bad I felt. The fever even reached a point where it was so high they had to cover me in ice packs. I had reached my limit on the tylenol they could give me so all I could do was suffer through the ordeal.
As if that itself weren’t bad enough, one night during all this my nose started bleeding. With my platelets as low as they were I had no help in getting the blood under control. My platelets responsible for the clotting were just not enough to counter the severity of the nose bleed I had at that moment. To make matters worse, the bleed was coming from so far up in my nasal cavity that applying pressure didn’t do anything but force the blood to go back up my nose and down into my throat. It was coming out of both nostrils and I was spitting blood to keep it from going down into my stomach.
Freezing from the fever, they try applying ice to my face to constrict the blood vessels. We attempted to use Afrin to help with the constriction of the blood vessels as well. My nose bleed started at 8pm. I went through several disposal bags while I was spitting blood and rotating through tissues as the blood that didn’t go down my throat continued to come out of both nostrils. The doctors got me started on another bag of platelets while we waited for the ENT (ear nose and throat) doctor to come and see if there was something more they could do.
The ENT doctor was able to locate the bleed but even after several different attempts at stopping the bleed, the unfortunate eventual solution was to pack it. Thankfully not with something so drastic as a rhino rocket, but still it was packed with a specific type of gauze that was stiff enough to be able to get high enough in my nose to get to the bleed and would last for several days. Finally around midnight I was no longer spitting out blood and could rest. Even though it was late, the anxiety of the four hour ordeal had left me unable to sleep. The nurses were kind enough to give me a sleep aid and around 1am I was able to get some rest.
Compared to other horror stories I’ve heard, this was only a fraction of what one might deal with during a hospital stay. It sounds bad but it can get worse. The adversity mounts. It builds over time as side effects and symptoms compound. The doctors and nurses do their best to ease all the different afflictions but there’s only so much that they can do. In the end, it comes down to enduring the suffering and continuing to fight. It’s a battle day to day. That’s why I keep telling people one day at a time. When you’re going through that hell, just concentrate on getting through the day.
I had pictures of my family up all over my room. I have two daughters and I’ve told them (and keep telling them) I want to see them grow up and I want to play with my grandkids. My why. It gave the struggle a purpose. Those rough days I knew were going to end. I might not know when but I knew they would. I had faith that I would be seeing kids grow up and do all the things that they wanted to in life. I knew that I was going to be a part of it and that faith is what I held on to. It was how I would fight through each and every day where I wondered just when the torment would end.
Later after being released from the hospital, I was still in such poor shape that I would have to have someone drive me to my clinic appointments. I didn’t have the strength or the concentration to even be able to sit through traffic. I was fortunate not to have extreme nausea. I wasn’t vomiting nor did I have diarrhea. I did have mucositis and certain areas of my mouth had swollen so bad that I couldn’t chew food. It was weeks after my release before I could eat a potato chip again. I was reduced to soft food and small enough bites that I could just swallow it. I lived off shakes and eggs. In the hospital I was eating cottage cheese and I abhor cottage cheese. But it was what was required for me to continue to get protein and calories. I knew that I wasn’t eating enough but was determined to get some nutrition.
It was that determination that kept me going. It was a struggle. It would have been easy to just eat ice cream or not eat at all but I knew that when I did get on the backside of this the better I took care of myself now then the better off I’d be then. The “fight” is always picking better choices. Choices that might not be easy. It could be getting out of bed and going for a walk. It could be choosing to eat cottage cheese instead of jello. The choices are not the easiest to make but will have the best effect. Those simple choices are part of the fight. Don’t succumb to just being easy. Easy might not always be the thing that will be the best for recovery or in the long term.
I can’t say that making these choices are easy. That’s why it’s a battle. It’s an internal struggle. That internal fight to choose the right thing. We deal with these struggles every day, with or without cancer. Do we binge watch netflix or go to the gym? Do we eat out or cook the food we have at home? I had to keep my mind on the why, my daughters, my family. I wanted to be strong for them. I tried to make the best choices that were available to me. I wanted to get better. I wanted to be healthy. I wanted to do all the things that were going to give me the best advantage of getting home to them sooner and allow me to stay at home longer. I didn’t want to be in the hospital. Then or ever.
The fight wasn’t a physical fight, although getting out of bed sometimes feels like it. The fight was a psychological struggle. The fight was between two choices. Sacrifice now for something in return later. Although it seems like there is only the now, especially when you’re in pain and struggling. There is our” why.” There is a reason to do the difficult thing now so that later I would be better. I could have laid in bed and wasted away during my twenty six day stay or I could fight. I chose to fight and get my ass out of bed.