The Five FU's...into the abyss

My Battle with Pancreatic Cancer Part 2

Like a hole at the bottom of the ocean, these thoughts and feelings were rushing in, crushing my heart. While all that was going on, we were amazed at how fast this was all being organized; time was a critical factor, and the doctors were moving fast. They needed to understand what they were working with and get to next steps quickly if there was to be any hope. A diagnosis of stage 4 cancer could mean only months to live. The oncologist reviewed the next steps and added that they would implement a power port inside my chest to assist in the administration of chemotherapy. It was going to be a very aggressive therapy called Folfirinox (5 FU). He joked that some refer to it as the 5 F**k Yous. I managed an eye roll – not finding it funny. He explained that the treatment was going to be harsh and tough to handle, but he was confident it would shrink the tumor. A smaller tumor would allow them to proceed with surgery and remove whatever was left. After that, I may need a little more chemo or radiation and then, their hope was to get me through, ‘hopefully another year.” A year to live…

Maybe a year

The air left my lungs and my soul sank. After all that, a year…The next wave of emotion was filled with so much ‘stuff’ – it was overpowering. I have never felt more vulnerable, more incomplete, unaccomplished and generally defeated as I did at that very moment. Except for my family, nothing I had ever done mattered and all of those loose ends looked like slippery ropes dangling over a deep, black, open pit. I was facing my mortality right there and then. I have heard those words in movies or books, but to hear them, being spoken to me, my fate, my time had at most 365 days to live.

Maybe a year to love my kids: to hear them laugh, argue, be young and sometimes impossible. Maybe a year to help them, see them start their careers, go off on their own, be who they are. See them succeed and be there if they failed. My oldest was graduating in December. The other two daughters had just turned 20 and were in various activities or states of developing their futures. My youngest was just a freshman in high school. So much left to experience, but now it was all interrupted. How will this affect them?

Maybe a year to love my wife. So little time to make up for all of my imperfections (there are many). I cherish the fact that I spend more time with my wife than with than anyone else. Now, I had maybe a year to express my love, which I know needed more expression. Maybe a year was definitely not enough time for all those long talks we didn’t have. Maybe a year to learn and grow better with each other. Maybe a year to take those road trips, finish all those home projects, keep all those promises, fulfill all those wishes and dreams.

Maybe a year to love my parents, my brother and my sister: how would I ever express my gratitude in such a short time for all they have sacrificed, for all the unconditional love they have given me, regardless of my appreciation or reciprocation? My brother and sister: I think of the time lost as I focused on career and carving a new path thousands of miles away from their love and support. My thoughts of the future included increased visits, long discussions after rich meals, drinking wine and arguing those minor details of past adventures. Ben, my father-in-law who was struggling with his own health at such a young age. He needed our help and attention and now all this would surely be a distraction.

This severe punishment for past procrastination rang loudly as I began to realize the opportunities that may be forever lost and now, possibly irretrievable. When tragedy strikes, there is always someone who reminds you to ‘hug a little longer and cherish those you love like there is no tomorrow…because tomorrow is never promised to anyone’. That statement rang too loud at this moment. So much information coming from the doctors…so many thoughts flooding my mind. While the room spun, I tried to focus and hold on, hoping to wake up from this nightmare that was spinning up so much emotion inside of me.

Feeling every ounce of pain

The ride home was painful. We stopped the car to regroup…tears finally flowed as Steph and I tried to focus our thoughts. We told the kids to meet us at home. We needed everyone present and together. I would have thought the sinking pit inside me couldn’t get any more profound…thinking back on those moments when I was organizing my thoughts to speak to the kids, my mind seemed like a dark abyss. There are some things that will never be easy to say. No matter how much you sugar coat it, feign optimism, put on a brave face: telling my children ‘I have cancer’ was fucking hard. The tears flowed. Seeing my kids cry has always been a bit of a crushing feeling…this was on a whole other level. The pain in the room was real and raw and the only way to handle it was to feel every ounce of it head on.

I’m not sure how long it took, but the sobbing eventually turned to sniffles. I promised my kids that although, from that moment, life had changed, their lives needed to move forward and be as uninterrupted as possible. They had a lot to do over the coming months (school, jobs etc.), worrying about me wasn’t going to help. I set our family goal: to ensure life would carry on as normal as possible and I would handle this with every ounce of effort and resource I had without disrupting their lives. If they trusted me with that, we could be successful, whatever success looked like. Naïve? Definitely. But at that moment, the most important thing to me was making sure my family was going to be ok. Next step, tell my parents and my brother and sister…ugghh.

Not Ready to Die

I was scared, a little confused, and in a lot of physical pain. I felt like my back was against a wall like never before. I wasn’t ready to be dealing with a disease and I definitely wasn’t ready to die. I needed to stay focused and keep it together. I needed to change my mindset, rewire my emotions and direct my energy towards getting better. There were percentages that defined survivors…I need to set my sights there. I had to disconnect the fact that it was a deadly prognosis and do whatever it would take to live a lot longer than ‘maybe a year’. I would manage this like I used to manage large programs in my corporate life, blocking out emotion (at least publicly) and sticking to the facts.

At this point, it seemed that chemo, surgery and recovery were the three main workstreams – the goal was survival. Doing this helped me get focused and in the process, defined an upfront assessment of scope, goals, requirements etc. It helped me compartmentalize work streams, activities and establish some sort of a comfort level by having a plan of attack. This upfront work was always necessary to assuage any doubts I may have, organize my thoughts and help me move forward. It was time to get on level with this damn disease and get it out of my body and my mind.

Let’s get this going

My parents flew in from Toronto the following week, on the day that they were doing the biopsy and implanting the stint and power port. All of the arrangements were being made to proceed with treatment. The surgeon had confirmed what all the pictures told them. The tumor was large, just over 3.5 centimeters and pressing against some significant veins in the area. There were a number of lymph nodes as well that may need attention. During the follow up with my oncologist, I told him of my need to get a second opinion at the Mayo Clinic. He agreed it was the right thing to do and I thanked him for his efforts.

On to the Mayo Clinic and The 5 FU…FML

A few days later, I was headed to my appointment at the Mayo Clinic with my entourage, Steph and my mom and dad. My oncologist came in and he looked even younger than the first one. He was smiling; every other professional I had dealt with so far was serious and somber. He wasn’t silly and giggling and thank goodness because that would have been weird. He was smiling and he didn’t look scared or worried. The young man is originally from Syria, studied medicine in Damascus and has worked in Atlanta, Georgia and now here in Phoenix, Arizona. His demeanor was somehow comforting. Encouraged by my general health, he began to discuss his recommended course of action which included the 5FU, followed by radiation and maybe an alternative form of chemo. The goal was the same: to shrink the tumor, remove it and other impacted parts of the area. Once complete, we would enter a period of surveillance and the expectation was that a cure was possible in this case…a cure was possible in this case. Sold! I thanked him and confirmed we would want to start treatment under his guidance as soon as possible. That was October 30th, 2019. A week later, on November 7^th, 2019, I started my chemotherapy.

The 5 FU’s

FOLFIRINOX is the name of a combination of cancer drugs that includes, folinic acid, fluorouracil, irinotecan, and oxaliplatin, all used especially in cases of advanced pancreatic cancer. The process takes place over 2 days and is administered intravenously at the clinic’s infusion center. Added to this cocktail: a lot of anti-nausea medication. I also had a basket of anti- nausea pills, anti-diarrhea meds, pain killers and other medications to help with the possible side effect of my therapy.

A typical treatment day started on Monday mornings. I would be led to a bay resembling a small office cubicle: no desk but it included a large comfortable chair and seating…for guests. I would often be in front of large window looking north towards mountain ranges and bright blue Arizona skies, dimmed by the tinted glass. Considering what I was there for, it was as pleasant as it could be. The process could take anywhere from 4-6 hours. In my case, it usually took a little longer. I threw them a bit of a curve ball on our very first venture. I began to get hives, an allergic reaction to the medication. Great. I had read from a concerned friend on Facebook, that allergic reactions were serious with this regimen and that it kept many from getting the treatment. Before claiming defeat, the nurses wanted to try a little Benadryl to see if that would calm the reaction down. I am not sure how much they gave me, but it was a lot more than the usual over the counter dose; I began to feel pretty light. While it delayed the process, the hives disappeared, and my nurse was able to continue administering the rest of the chemo drugs from the bags hanging over my head.

The volume of medication being administered in that first session, was more than all of the previous medications I had had during my 50 years on this earth. As each was injected, it presented itself on my taste buds, through the pores of my skin and within the beads of sweat on my face and neck. My senses were on peak overload and added to that, the Benadryl high made me stare harder at the horizon, breathing deep to find some control. It was gross. My skin seemed to turn ashen and a little yellow. My mouth dry and it felt like I was sucking on a piece of aluminum or some sort of metal. Dizzy and nauseous, high as a kite…I asked for another heated blanket and tried to sleep as my whole body buzzed with what seemed like an electric charge from a low voltage appliance.

Once all the IV bags were emptied into my chest, we were ready to go home. They hooked up a portable infusion pack to the port in my chest that I would wear for the next 48 hours and then return to have it removed. I can still hear the faint pumping mechanism when it’s really quiet, followed by that metallic taste on my tongue and throat. Each session I shuffled out of the hospital craving a familiar spot on the couch or my reading chair to sleep or distract myself with a book. I would repeat this process every two weeks for the next four months.

Initially, the effects of the chemo drugs would dissipate after a few days of removing the portable pack. However, with each treatment the number of shitty days during that 2 weeks would increase. I would sleep for hours. I couldn’t drink anything cold as it felt like swallowing glass down my throat. My feet and my fingers were ultra-sensitive to cold – more stinging. That low voltage buzz stayed with me for most of the 2 weeks, irritating any nerves I had left. The basket of drugs I mentioned earlier, well one of the main medications they use for nausea is steroids. I had to take them for the first couple of days after each treatment, but as soon as I could, I stopped. They were turning me into a miserable son of a bitch and that was not sitting well with me. I began to use meditation and alternative therapies to quell the queasiness.

I thanked God for every minute of chemo because, for how lousy it all felt, I figured it had to be working. The level of care and attention administered by the doctors and nurses that have helped me, especially the folks at Mayo, the help my parents had provided, the strength my family was demonstrating and the hope I felt, would not be outshone by the ugliness of this disease.

I somehow managed to get from my primary care physician investigating a pain in my side, to my first chemo treatment, in a few short weeks. Any professional I have recounted this to, cannot believe how fast it happened – I cannot be anything but blessed. Each week that passed was one week closer to my goal: survival. I was scheduled for a follow up scan at the beginning of January. My oncologist would assess the rest of my treatment once he received those pictures…

Please come back for more of this journey. If you read my story, please consider subscribing. All proceeds will be used to support research and development of treatments and therapies for pancreatic cancer. The survival rate for pancreatic cancer patients beyond 5 years is less than 14%, one of the worst of the top ten cancers…