The Nuclear Option
My Battle with Pancreatic Cancer Part 3
The Nuclear Option
“Have great hopes and dare to go all out for them. Have great dreams and dare to live them. Have tremendous expectations and believe in them.”
~ Norman Vincent Peale
~ Norman Vincent Peale
As we made our way through November, the effects of the chemo were being experienced as they unfolded, presenting themselves with each infusion in real time. While I had reams of documents and pamphlets telling me what to expect, I only understood once the side effects started to manifest themselves throughout my body and my mind. My only focus was to get through each treatment as quickly and effectively as possible; to me, nothing else mattered at this point…or did it? My treatments were every 2 weeks and I was injected with nuclear medicine and steroids from Monday to Wednesday. Then for the next week and a half, I would swim upstream to get to the good days as soon as possible. Initially it took until the first weekend after the Monday treatment, before I would begin to feel better.
The mental gymnastics we had experienced with this cancer to this point has been exhausting on so many levels. We began to dig to find some sort of self-help.
One thing Steph did struggle to find online were stories of survivors and families that experienced pancreatic cancer and the challenges they experienced during treatment. As you heard in part 1, she found a lot of information on the severity of my cancer, but she also discovered that there was a dearth of experiences out there to help us get through the process: some sort of virtual, ‘What to expect while they kill the tumor inside my body’. The mental gymnastics we had experienced with this cancer to this point has been exhausting on so many levels. We began to dig to find some sort of self-help. I have come to rely on Google and YouTube over the last few years to help resolve most issues that I encounter. Whether it’s fixing a toilet, a pool pump, raising kids, whatever, chances are someone has put some media out there that I’ve used to get me out of a jam. Having said that, on more than one occasion, I have found myself stuck with a disconnected toilet, a disassembled appliance, an extra part or even angrier teenagers, with nothing to help me get to the next step, except figuring it out myself. I am putting my story out here, not because I think I have all the answers, or that anyone cares (although the outpouring of support has been incredibly heart-filling). I am putting it out here because, this maze of physical and mental challenges can wreak havoc with many of the lives connected to a journey through illness and recovery. If I can help get one person through a day with a small amount of insight or understanding, to achieve even a small shred of success while battling any disease, it will be worth it.
I was definitely overconfident after my first treatment and I thought I would get through this without a struggle. But, every session would remove one or two good days off the total fourteen days between treatments. My taste buds would mostly recover by about the Wednesday of week two, but the neuropathy hung around a lot longer…yes, lovely neuropathies; they immediately presented themselves as a result of chemo. I could not eat or drink anything cold – even water. If I tried, the stinging and burning, like glass shards, overcame my mouth and throat; cold water, soda, ice cream, were suddenly out of my life. My fingertips and feet were also extremely sensitive to cold…more stinging, like pins and needles. The first bite of anything caused the muscles in my jaw and throat to contract painfully for a very long 10 seconds and my body felt as if it was constantly buzzing during the infusion period. These effects lingered for as long as they wanted to, without any real pattern adherence except that it was taking longer to recover after each session. In fact, it wasn’t until a month after my last chemo did most of this dissipate. Some of it returned when I started radiation, but I’ll save that for later.
November turned into December: month one, done. My dad had to get back to Toronto to manage his own prostate cancer treatment. Mom stayed to help until mid-December so she had taken over the cooking and spent the rest of the time fretting over me. I hoped she was also enjoying the beautiful fall weather we were having in AZ compared to Toronto. It was the longest she had ever been away from my father and all this while he was going through his own battle with cancer. She was a blessing and key to getting me through the first phase. My oncologist had given me two main directives: don’t lose weight and don’t get sick (cold, flu, infection). Either or both could interrupt my chemo schedule or corrupt the actual therapy, so my focus was on eating and staying healthy. Mama’s cooking can’t be beat and that was exactly what I needed.
As part of my bi-weekly, nuclear liquid loading, I was also filled with anti-nausea and anti-diarrhea drugs that I believe worked. I didn’t vomit once and the other thing, well I got lucky there too. However, I was constantly nauseous; head spinning, mouth-watering, pit of your stomach sick, with meat-sweats and all. Regardless, I was not going to lose weight. If you know me, you know I really enjoy a good meal so I knew I could make that work and mom really helped. Chemo also does quite a number on your white blood cells and your general immunity so, homemade chicken soup, staying home or wearing a mask whenever I left the house were mandatory. In fact, I can honestly say that I had been in some form of lockdown since November: pre-COVID-19. I was focused on those two directives and as part of this workstream, we were not going to lose any time because of weight loss or illness.
Crazy house. I was passed out on the couch. Lucidity and wellness were becoming more difficult with each passing day and my family
To say we had a lot going on in the house was an understatement. Anything and everything were testing our allegiance to our goal of being as normal as possible and while the intention was to maintain a regular rhythm, we were struggling to make it happen. The guilt was starting to weigh me down. I had separated my mom from my dad, and I didn’t feel we were really appreciating her efforts in the moment. I couldn’t be there for my wife and my kids while I was passed out on the couch. Lucidity and wellness were becoming more difficult with each passing day and my family witnessed all of it because I was occupying couches everywhere. I could have gone to my room when I couldn’t deal, but I could not imagine what spending hours or days in bed would have done to my psyche. I needed to be around everyone whether I was conscious or not. The steroids were turning me into a real asshole. I was mouthy and irritable most of the time. I didn’t mean to be, and unfortunately no one was safe from my glare or occasional biting words. That was difficult and surreal; it was as if I was standing outside of myself, hearing what I was saying and just as the words left my mouth, I wanted so badly to reel them back in…not good. During this time, I could tell the very instant that the good days had arrived – I felt totally different. It was like a weight had been lifted off of me; I was so relieved when that switch finally flipped. On those good days, I crammed in whatever I could…small mundane tasks like taking out the garbage and straightening stuff up to wanting to go to the grocery store, leave on a road trip or take a hike. These weren’t always possible, but it was a good day if I felt that ambitious.
Every aspect of our life had now been turned upside down and too many specific plans needed to be shelved. Uncertainty crept into every detail of our days.
I wasn’t paying attention to how this was really affecting my family. I just expected everyone was taking it all in stride. Life outside of my abdomen was expected to carry on and proceed with no discernable impact to our everyday lives. That was the mandate; follow the plan and get the goal. Well, that isn’t how this works. I wasn’t thinking about how this was affecting Steph. She was dealing with the stress of her dad’s illness while juggling work pressures; so much time spent coordinating her schedule, her dad’s schedule along with my appointments, all while dealing with my crabby, sick ass. Every aspect of our life had now been turned upside down and too many specific plans needed to be shelved. Uncertainty crept into every detail of our days. What would this do to us financially? Did we have enough health insurance? What about wills and medical directives? Life insurance? The week I went to my doctor for the first time, we were supposed to be travelling to Toronto: our first out of country vacation in a while, an opportunity to see my family, especially my dad – cancelled. Steph hadn’t been feeling 100 percent healthy before all of this: how was this affecting her now? Being groggy, irritable, nauseous and full of radioactive chemicals a good percentage of the time, makes communication and everything else difficult, even with family. Everything was disrupted; the natural ebb and flow of the house had been disturbed and it didn’t matter that we were getting help, it was all different. Releasing control to everyone else is not something I have ever found easy and even Steph was starting to struggle. Add to all of this, the coming holidays and needless to say, there was a significant amount of stress hanging over all of us.
Ben was diagnosed with a tumor on his kidney at about the same time they found out what was going on with me. His kidney was removed in November, and while he championed through the surgery, now being permanently on dialysis, he was beginning to physically struggle with the process and the changes in his life. He kept thinking he would get back to normal, but this dream was fading fast for him. His health was up and down, but mostly down. I tried to do what I could with doctor’s appointments and just trying to be supportive, but I had started to become useless to both Ben and Steph. The chemo sessions had been wearing me out more and more and good days were getting shorter every session. I remember attending an appointment with Ben as he visited his cardiologist. After tending to him and serving up his usually diatribe on the evils of salt, the doctor began making some notes, and then turned his direction to me, ‘what’s with the mask?’, he was kind of a gruff guy. ‘I’m going through chemo, I have pancreatic cancer’, I responded as cold and matter-of-factly as the question was posed, his posture sagged. ‘Hmm, that’s too bad’ he responded and went back to his notes. Ben and I looked at each other and I could see him shake his head. I realized that no matter what he was going through, he was worried about me and he didn’t want whatever he was going through to interfere with my treatment. Ben was a tough guy with a heart of gold…more on him later.
Where’s the Wisdom?
My son was in his first few months of high school. At 14, what was he really going through as he watched all this unfold in such a heavy environment? I took talking for granted and assumed my fighting attitude was ringing a positive vibe. I assumed that he understood that the effects of the chemo were deleterious, and it wasn’t really me. I never asked or checked in with him as I was too caught up in dealing with my physical and mental limitations. He was witnessing the physical deterioration of both me and his grandfather. Two close male role models in his life were struggling hard. He is not as gregarious as the girls so even though we did have family talks, he wasn’t getting a lot of airtime. The girls were trying to maintain their cadence of work, school and social needs, and the changing rythmn was surely affecting them. My girls began to spend a lot more time at the house and with my parents also in town, it was getting a little crowded. Work hours were being piled on too, as the holidays were getting closer. Alex was getting ready to graduate and Allie and Olivia were dealing with their finals and end of year assignment wrap ups. All that exciting and stressful energy as they prepared: exams, certifications, ceremonies, parties, grad pictures, and other preparations. Yet they made time to be with me during some infusions. They were present at more meals. Every couch and room was full. I had become a mere observer of what was unfolding in my own home: a passive participant, distracted by my own morbidity. Looking back, I think there is so much more I should have been saying, asking, and I should have been listening more closely.
Needless to say, when this much pressure builds up within any vessel, the inability to release or resolve some of that pressure inevitably leads to an involuntary release of that pressure. I wish I could tell you it was all singing and dancing, hugging and laughing, roses and sunshine at my house…but that’s not my family. Every once in a while, a little yelling, crying, reckoning and resolving was necessary; so, we did. We came to expect that things were going to blow up once in a while, but we also knew it would be better once we regrouped and slowed things down a little.
When you’re faced with your own mortality you may believe that, all of the sudden, you will be filled with the wisdom and courage to sort it all out and keep it together for yourself and those that surround you.
How could I let the pressure build up like that? Why didn’t I notice it and address it sooner? I am supposed to be the elder in this house. When you’re faced with your own mortality you may believe that, all of the sudden, you will be filled with the wisdom and courage to sort it all out and keep it together for yourself and those that surround you. You may believe that significant adversity will instantly provide you with all of the right things to say to calmly manage any situation. Challenges will provide you with the perfect story or anecdote to assuage any doubts and fears, and most importantly, provide you with a viable solution to solve any problem…well, not me. My mortality had me lost for some time. I had no idea and my focus was firmly fixed on getting through the first phase of treatment. It wasn’t until I started to force myself to be more reflective, that I realized how much I couldn’t see. One thing that became important and even necessary to cope with just about anything, was my own ‘elasticity’. How much could I bend before I broke and how much could I listen before I spoke. Problems didn’t present themselves when I lost my way…the problems happen when I don’t stop soon enough to ask for directions and recalibrate my path. Now, I am not saying I have figured it all out. I just hope that, I have learned that sooner rather than later, when I find myself lost, I stop to ask for directions and get back on the right path…hopefully.
Thank you for taking the time to share this journey…