On June 30th, 2020 I will be admitting myself to the Mayo clinic for an exploratory laparotomy and pancreaticoduodenectomy. They also call it, the Whipple – Whipple sounds a lot more playful doesn’t it? It will be the last stage of treatment (hopefully) to remove a tumor that exists on the head of my pancreas. I say hopefully because depending on what they find once they are actually in me, I may need some additional chemotherapy. I discovered this meddlesome beast in October of 2019. Pancreatic cancer is one of the deadliest forms of cancer according to both the National Cancer Institute (NCI) and Pancreatic Cancer Action Network (PanCan). This means a 5-year survival rate of less than 50%. These cancer cells can grow undetected for years and while it presents itself in the pancreas, the real danger comes from its skill of spreading to other organs: the liver, lymph nodes, kidneys, the stomach etc. If that happens, it is usually too late to stop those voracious, often unforgiving cancer cells. You can live without a pancreas: it is much more difficult without a liver. The five-year survival rate with treatment is slightly over 8% with approximately 2% surviving 10 years or more – that’s if you’re one of the 5% to survive a year after initial diagnosis. From the beginning, my plan is to finally, for the first time in my life, be included in the top 1%.
It began with the pain
Let’s go back to October of 2019. The back pain was nauseating as I sat in the hospital chair. Now the sharp jabs had crept towards my abdomen, along with an annoying throbbing in my side…I shifted uncomfortably in my chair, hoping for some relief. We were at the hospital comforting my father-in-law Ben. He was admitted a few days before and was dealing with a number of serious issues that would eventually take his life early in 2020. This in itself was a horrible event that took us by surprise and flipped our world upside down. My wife and I were there for him, but I couldn’t stand my own pain. I got up to walk around a little and in the process, overheard someone discussing gall bladder issues: it sounded familiar. My family has a history of discord with gall bladders so, I scheduled an appointment with my doctor for the next day.
The first step was blood work and an ultrasound; both completed within 24 hours. Feeling a lot worse and unable to sleep, the next day I called my doctor to see if they had any results. ‘Can you come in this afternoon?’ …obviously, yes. The ultrasound was pretty clear. A large shadow was present at the head of my pancreas: not a great start. My doctor insisted I walk to the surgeon’s office next door and make an appointment. My doctor, whose usual advice to resolve most ailments was a green vegetable drink, a plant-based diet and stress reduction, was urging me to see a surgeon. It was Thursday and there was no availability until Monday. Too often I have been known to downplay my health concerns: the more you worry, the more stressed you become, and then the stress manifests itself into illness…a vicious cycle. Fortunately, I have not had any real health concerns: a flu once every couple of years and some annoying signs of aging have been my main issues. Considering I was not the most health-conscious person, I thought I had done well…up until now. This time, however, it all felt very different.
No availability until Monday
Friday through Sunday became the longest three days ever. I tried to shrug it off, but that didn’t work for my wife Stephanie…did I mention she has excellent research skills? I mean, Top. Notch. Skills. Add that to the fact that there is no shortage of medical advice and health opinions on the internet and I can tell you it started to get real, very quickly. The reality was, I was most likely facing pancreatic cancer. The worst possible outcomes are always at the top of the search and the averages didn’t look good. Certain death, less than 5-year survival, no real hope, rapid spread, vulnerable liver, etc. By Friday night, I had decided to stop looking and listening. My mind took over from there. How long had it been spreading inside of me? Had it become unmanageable? Was it overpowering healthy cells throughout my digestive system? My liver, kidneys, intestines, stomach were all vulnerable to the deadly cells spread. I became numb and chose avoidance and denial as my first strategy. I fought the urges to get to a hospital. Our immediate thoughts were to make appointments at the Mayo Clinic that was just down the street from our home. I had decided to let it play out…let’s see what the surgeon said on Monday. I prayed this was all a mistake and that our fears were being exaggerated by the information we were finding online.
The surgeon and her assistant, entered the exam room, their expressions, serious and somber. A computerized tomography (CT) scan was scheduled and bloodwork was ordered to measure my CA-19, a blood marker that measures proteins associated with pancreatic cancer. Wasting no time, I completed the required tasks within the next 24 hours – I have no idea how, but it got done. The Wednesday follow up was prompted by a call to get back into the office, immediately. My CA-19 was over 630, (normal levels are less than 30). A 3.5 centimeter mass had formed on the head of my pancreas. My body went numb and I physically sunk to my knees. I had to hold myself together…it seemed impossible as the surgeon gently excused herself. As I held Steph’s hand, my eyes strained as they held back tears. The pain in my head from trying to control myself was unbearable. A few minutes, an eternity, finally the doctor returned.
‘I called a colleague’ she said, ‘a cancer surgeon: he can see you as soon as possible. He is also making arrangements for you to see the oncologist in his office.’
Incredible! Without hesitation, we proceeded to the other office. The ride silent, tense, filled with fear and all the uncertainty that comes with this horrible news. Focus seemed impossible and deep breaths were required to maintain some sort of functional composure.
The second surgeon was extremely calm as he explained the need for a biopsy and the placement of a stint to relieve the pain. A nerve blocker would also be deployed. As he moved on to making the necessary arrangements for surgery, he sent me to an oncologist upstairs. I was in a state of quiet shock…cancer. I was only 51. My daughters were all at the beginning stages of starting their lives as adults, I had to be there. My son, a freshman, I had to be there. My father in law was gravely ill, I needed to be there for him and for my wife. My own father was going through prostate cancer and my uncle was fighting prostate and liver cancer. I was going to make my wife a widow so young…there was still so much life ahead of us. My mother, my brother, my sister, my friends…I wasn’t ready to die.
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 at this point 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.
Maybe a year to be with my kids: to hear them laugh, argue, be young and sometimes impossible. 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 be with 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. My parents: 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.
The severe punishment of 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 made me feel bad…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. Our family goal was 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, our goal would be success and whatever that looked like. Naïve? Maybe. But at that moment, the most important thing to me was making sure my family was 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 any other large program. 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 workstreams, activities and establishes 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 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 in the area 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 thanked him for his efforts.
On to Mayo 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 parents. 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. He is originally from Syria, studied medicine in Damascus and has worked in Georgia and now here in Phoenix. Just his demeanor was comforting. Encouraged by my general health, he began to discuss his recommended course of action which included the 5FU, followed by radiation and 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…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 (November 7th), I started my chemotherapy.
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 an 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. 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. Don’t believe everything you read – especially on Facebook!! 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.
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. I was dizzy…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 tubes 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 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 queeziness.
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…
More to come.