My Battle with Pancreatic Cancer, Part III

It was Tuesday in Cordes, and as the light began to creep in from the east, I slowly made my way out of my cocoon of blankets. My phone told me it was only 28 degrees outside, but I couldn’t believe it: maybe my blood had thickened to protect against the chill. The coffee maker gurgled and brewed as I watched the cardinals, bluebirds and quail adorn the peach tree like it was Christmas morning. I layered up to breathe in the cold morning air. The distant sounds of this little town waking up began to break the morning silence while the menagerie of birds chatted amongst themselves. It was December 1, 2020 and I welcomed the beginning of the final month of what has been a year filled with the extremes of any emotion to be experienced, knowing my story wasn’t the most dramatic out there. But for me it’s been a trip. I was alone but not lonely as I watched the big black angus deliberately clip clop (that’s the sound its hooves made) down the hill. I think it was a black angus, what do I know about cows? I decided a morning fire was a good idea and set upon loading the patio fireplace with fuel. It was not long before it crackled with light and smoke and the heat began to build up. My once hot coffee was losing the battle with the surrounding cold air, but it was delicious regardless of temperature. 

I sat and watched the fire take control of the wood while breathing in the crisp air and its tinted fragrance of smoke. The birds assessed my presence cautiously, while coaxed by the seed in the feeder and the ground below, not six feet away. They kept one eye on me and tilting their heads, another on the seed stealthily planning their next morsel. They loved the free grub, and I was happy to accept my morning company. I sat and marveled at this blessing and the curses that had brought me to this place. All reasons both within and beyond my control had created this experience. I am still not sure whether it is my stubbornness, ignorance, or fate but it was now indelibly part of my life experience, so I refused to wallow in any despair. I understood nothing and everything at the same time, knowing acutely that the future is always uncertain…although isn’t that the way it is for everyone? In the distance, the quail engage in an unrelenting conversation, one clearly voicing their opinion while the others chimed in…I sat back for a minute, determined to hear the outcome of this particular morning tale. As I listened, I sat back and lifted my head towards the morning sky…thank you. 

There is always an angel watching – I wish I was a better photographer.

I started part 3 around the end of August, almost two months after my surgery. After a couple of days I stopped, somehow unable to continue. I seemed inhibited by the emotional and physical roller coaster ride it had been. I haven’t wanted to express it in writing again until, Sunday November 9, 2020. Alex Trebek the famed host of Jeopardy died at age 80 after a two-year battle with pancreatic cancer. I picked up my story again for a few more days and left it alone until now. 

While all cancer is horrible, pancreatic cancer is particularly sinister on a couple of levels. First, it often goes undetected. Those who are afflicted may not realize there is a problem until the cancerous cells have spread beyond the origination point. A stage 4 diagnosis is presented when the cancer has spread beyond the pancreas…liver, lymph nodes other organs become vulnerable. This makes it difficult to eradicate…like using your fingers to stop a bursting dyke, depending on the extent of the spread. If you catch it early enough as I did, stage 3, you can experience the scientific wonder of chemo therapies and have your entire digestive system rearranged, only to face a very high percentage of recurrence…as much as 80%. Even when the doctors feel they removed every cell they can see, you do not ring the bell until you reach the five-year mark, undergoing regular surveillance scans and blood work. If you make it through that with no returning cells, then you can ring it.

I watched Mr. Trebek’s progress with great interest, although I wasn’t aware that he had taken a turn for the worst. He had been diagnosed with stage 4 in March of 2019 (I was diagnosed in November of 2019).  Mr. Trebek’s perseverance was admirable and inspiring: the fact that he continued hosting his show, wrote a book, and fought through tough therapies, was inspiring. He also admitted an aspect of the disease or the fighting process that I could relate to and that was the impact on his psyche. Trebek admits he dealt with severe bouts of depression throughout his ordeal. I can relate. I have gone through and continue to struggle with bouts of anxiety and even periods of depression. I fight them with meditation and prayer and sometimes, I just have to ride out the emotions. This sinister disease attacks a person from every perspective: physically and mentally. Of all of the information we investigated, learned through experience, or sought guidance about, I feel there is a dearth of information as it relates to the psychological challenges of going through a cancer diagnosis, treatment and fighting to get to remission – they are not discussed as much as they should be. While these symptoms are monitored through questionnaires, I never quite felt they were being addressed. I even minimized them myself as I struggled through the physical effects of the treatment. The emotions became secondary. I am very grateful for Mr. Trebek’s courage to discuss his emotional state. What I also shared with Mr. Trebek, is the feeling of support across a broad community of family, friends and colleagues. That made each challenge: physical, mental or emotional, easier to overcome. When those feelings of anxiety and depression really began to promote themselves, was after my surgery…when everything went as well as it possibly could. What now? More on this later. First, I want to take you back to where we were after part two. 

The days, weeks and months following Ben’s death had been slow and foggy. There was no revelation of reason that made the reality of his death and how quickly it came, clearer to any of us; no amount of late-night crying or discussions, quiet explanations, or wild cursing made it acceptable. There was no simple reconciliation of the emotions we were all going through, especially Steph…her heart was broken, but as her mind raced, she began filling every minute with some type of work to sort out her father’s affairs and coordinate with her sisters, pouring over every specific detail. I felt like the affable but incompetent assistant as I tried to help. I had been given a little extra time off from chemotherapy, so I was more lucid than usual. I was grateful for that. We spent time at Ben’s home with Kelly and Andrea, getting things sorted and organized. I knocked down as many overgrown bushes and weeds as I could, getting the land cleaned up, just in case he was watching. It was a wound that wasn’t healing, and no one expected it would happen any time soon. 

I was scheduled for 3 more, 3-day infusion sessions of chemo to start up again on January 20th. The familiar funk and fog sprang back into full action throughout my body; after a few days of lucid reprieve where I was able to indulge in more than a few liters of cold water and even some ice cream, I had sunk back into my familiar hole in the couch and retreated into my books. No more cold water. No more ice cream for a while. The fortunate part was there was an end in sight and if my next set of scans gave the doctors the right answers, I would have at least four to six weeks off of chemo to prepare for radiation. While neuropathies lingered in my extremities, they were ‘duller’ than when in full effect. I dreamed of multiple weeks off while my body buzzed with nuclear medicine. The painful heartbreak of Ben’s death became more acute as a result of being off chemo for more than a week; the fog lifted but the mood was even more sad. I did my best to be there for Steph and the kids and I had also become consumed with the daily news cycle. 

Information began to unfold about the pandemic that was beginning to rage around the world, and I began to become angrier at the response from our various levels of government. I was not leaving my home for any reason other than going to Mayo for appointments. We had ordered more masks and gloves for the house; luckily, we had a lot of hand sanitizer. While I couldn’t believe what I was seeing, I was hoping that maybe I was wrong and for once our President was right…what I was wrong about was even thinking that the president might be right. This disaster was affecting all of us. Alexandra, as a brand-new nurse, was delegated to the COVID ICU, putting her at risk and therefore a risk to me. She immediately moved in with her girlfriends to keep away from us. Some of them had moved back to their home states to be with their families which gave her space to be safe. Allie could not work her job as the risk in assisted care centers was increasing and again, we couldn’t risk illness in the house. Liv had been laid off as the preschool she worked at closed to protect the staff and children. Friends were having to stay away, so the very helpful get togethers that made some of this cancer stuff bearable had to stop; they were helping me cope…now they were gone. My parents could not come back as travel became scary and precautions, sketchy and inconsistent. The Canadian government was being a more transparent with their residents, so the levels of precaution were much higher than they were here. My dad has asthma and prostate cancer so there was no way any unnecessary risks were going to be taken. The one positive was that Steph was now working from home which made some things logistically easier and it was nice to have her close. 

We were doing everything we could to avoid the virus, especially as I had already made two trips in the past few months to the emergency room, the potential impacts to the family were significant. However, the messages across the news chyrons from our leader was that it would be ‘over soon’ we were ‘doing well’, ‘no need to over-react’, no need to mandate safety,  and our response was ‘like nothing else the world had seen’…all bullshit. As a result of his lies, this was only going to get worse. It would take longer to get back to some sort of normal as I dealt with my crisis within a greater crisis…and I became even more angry. As time passed the risk of cancelling any surgeries had started to become a reality. I had come a long way and the last thing I wanted was to get to a point where surgery was possible but would not be scheduled because of hospital precautions to protect people’s health. Yes, I was being selfish as the Covid death toll was beginning to rise and I knew that there was something bigger happening around me than my illness…but I wanted to finish this ordeal and the thought of a delay was nothing short of maddening: like watching a horror movie unfold before me. I’ll leave this here and not dwell on it any longer within this story. I’ll have more to say at some other day in some other way. 

While the risk of hospitals cancelling any surgeries and the news world was driving me insane, I was blessed with the fact that I was surrounded by some of the most amazing humans I have ever met, my doctors. These folks are truly a phenomenal group. A team that had been working together on my case to plan out my care, fight my insurance company’s resistance to certain treatments, and make sure that I worked through this as well as I possibly could…they were leading me towards total remission. Aside from their expertise and ability, they are supported by some of the nicest, most capable, thorough and responsive group of nurses, physician assistants and support staff you have ever met. I am a believer in their system of care, and I can see why they are so successful. The bios I have cited below are partly from the Mayo Clinic website, other online sources and then my own opinions of them. I will start with my oncologist.

Mohamad Bassam Sonbol, M.D.is an Oncologist, with special interest in neuroendocrine tumors and gastrointestinal malignancies. He graduated from the University of Damascus Faculty of Medicine in 2012. He completed his residency at the Medical College of Georgia Hospital in Atlanta. In addition to his clinical activities, Dr. Sonbol is active in research that focuses on investigating novel treatments including targeted therapies, immunotherapy, and other agents that could potentially help patients with neuroendocrine and gastrointestinal cancers. Dr. Sonbol focuses on the holistic treatment for cancer patients taking into consideration their medical and social aspects that have been affected by their cancer diagnosis.

My first impression of Dr. Sonbol when I walked into his examination room in November of 2019, was that he was young. He seemed nervous and confident at the same time, but after a minute, there was no impression that he was nervous. It was all in my head. We went over the details of my case and we even got to know each other a little. He was a newlywed of one year: he’s Syrian, from Damascus. He spoke, he listened and at the end of his recommendation of treatment, he said the most important words that kept me going through this whole ordeal. ‘I think this gives us the best chance to achieve a cure’. His optimism was all that I needed to flip that switch and believe there was hope. This meeting took place almost a week after I was told I would possibly last a year and this guy was using the word cure…I was all in.

Terence T. Sio, M.D., M.S.is a radiation oncologist and associate professor of radiation oncology who specializes in both X-ray based and proton radiotherapies. His main focuses are in gastrointestinal, lung, and brain cancers including brain metastasis treatments using stereotactic radiosurgery (SRS). He has a strong interest in ion beam radiotherapies internationally.

Dr. Sio’s enthusiasm was infectious. From the very beginning he was bound and determined that I would be getting proton therapy instead of the usual radiation and even with insurance company pushback, he and the team made it happen. Every visit with him was filled with education and optimism and sometimes I swear he got giddy with my progress. We were really in this together and he was focused on getting me through this phase and making surgery that much easier. Dr. Sio also stressed that fact that my goal was to protect myself from covid-19 so that there were no delays to our progress. He pointed out that I had already chosen the right mask, demonstrating the need for proper hand washing and to maintain a keen focus on self-care. He and his staff were nothing less than enthusiastic, very capable, and focused on my success. 

The various teams of nurses and technicians that administered the proton therapy, 5 days a week for approximately 3 weeks, greeted me at every session with smiles, hope and care. They played classic rock and roll in the radiation room even though they were barely of that age. Tom Petty, The Rolling Stones, Pink Floyd Crosby, Stills, Nash and Young and many other classics got me through the time being locked onto the table and getting my therapy. It made it all more bearable.

Adyr A Moss, M.D. is a General Surgery Specialist having more experience with transplant surgery and liver, pancreas, gall bladder, spleen surgery than other specialists in his area, according to HealthGrades. Dr. Moss is a specialist treating Pancreatic, Colon and Hepatocellular carcinomas as well as a liver and kidney transplant specialist. He is an award-winning surgeon who is proud of his team and their efforts to continuously increase the number of transplants and patients they treat on a yearly basis. 

When I first met Dr. Moss, I immediately trusted that he would never lie to me about my treatment potential and that he had the highest level of skill and confidence necessary to execute to the very best of those abilities. He took the time to educate me as much as possible on what was going to happen and did this before and after my surgery. I learned more biology from him than any other time in my life. He made it clear that this was no walk in the park. If the chemo and radiation did not do what it was supposed to, he would not put me through the stress and danger of the Whipple. I knew exactly what I was getting into with this surgery and regardless of the trepidation, I was confident that I had the best surgeon and surgical team available to execute with success. More on my surgery in a bit. As far as I’m concerned, this man is an artist with a scalpel and sutures – you should see my scar. He spent 9 hours on his feet removing and rearranging my digestive system with most of his focus on carefully releasing the tumor from my common hepatic artery, without damaging the vein. 

As I mentioned, these guys were supported by wonderful and dedicated teams of nurses, technicians and fellow doctors that made sure every step was covered before during and after treatments. There is no way I can ever thank these doctors and their teams enough for everything they did to get me to where I am today. I could go on about all of them, but I will close by saying, my ability to fight this cancer is only possible because of their skill, their dedication to their art, their experience and their compassion for their patience. 

Proton radiation therapy was five days a week for three weeks. After the first week, I honestly thought ‘this was going to be easy’, then the reality set in. I was exhausted. I began to feel weak and the pain that began to develop in my abdomen reminded me I was fighting a relentless demon that wasn’t going to succumb easily to my efforts or of those skilled practitioners who were getting me through it. However, I had to overcome: this too had to pass, and I had to remain in decent shape for surgery. The goal was already set and there would be no deviation. It began to become very clear why there would need to be at least four to six weeks between radiation and surgery – I had to heal enough internally to even consider surgery. Just to add in a little excitement, I had developed two linger gastric ulcers. They created a lot of pain when eating and general discomfort plus heartburn the rest of the time. Another hurdle, but the team was ready and this too became somewhat manageable. 

By the end of proton therapy, I received a very nice certificate from my attending nurses / technicians and I was able to keep my body mesh – the fitted, hard plastic torso and neck apparatus that kept me strapped down to the table. As sentimental and kind as it was, I was having trouble seeing it… I was over it, exhausted and in pain. I had to get rid of that attitude fast, it was another key milestone cleared, I did feel some sense of relief and gratitude. While the proton therapy had not really shrunk the mass, they couldn’t confirm it was killing the tumor, but were very confident in the therapy’s impact. My CA-19 blood marker had dropped again meaning the cancerous cells were dying. Now I was ready for surgery…but it wasn’t quite ready for me. 

The pandemic was still surging, and the effects were being felt beyond New York and Italy. In the U.S. the virus moving gradually west, from north to south like a wildfire. Hospitals had begun to fill up with cases and the death toll began a rapid ascent. To combat the crisis of over-capacity and staff shortage created by this plague, and those that didn’t believe wearing a mask could help, all elective surgery was being postponed or cancelled. But I didn’t need to worry, I was not having elective surgery…actually yes, I was. I found out that my surgery was considered elective. How could this be? It’s cancer, it needs to be stopped and cut out of my body as soon as possible! What about someone like me out there who needed treatment, surveillance scans, and check-ups? How many people were suffering or shifted up to a higher risk level because they couldn’t get the proper access and care? It was well beyond me so I needed to breathe, `wait and be patient as my doctors sorted it all out. While it was considered elective, my doctors assured me that it was still life threatening not to have surgery (that was so encouraging) so they would be presenting my case to the board as soon as possible. 

In the meantime the pandemic was taking another toll. Aside from the toilet paper and other shortages, I visited with Alex only from a distance. She would stand out on the sidewalk after picking up a few things left outside for her and chat. Yes, I could call her and even facetime…seeing her in person was even better. Allie, Aidan and Olivia were stranded at home and cut off from what should have been a normal, young social life with friends, work and school. The social impact on our children, like so many people was manifesting itself in the form of depression, anxiety, loneliness and even raw fear. It had become a sad and scary time. We had begun to transform the house so Steph could work comfortably from home without distraction or interruption. She was a master of keeping us stocked, getting the rhythm of online searching and shopping to be successful – sometimes a little too successful. Everyone was making sacrifices for me: my immune system could handle nothing less. My focus was on getting fit and well enough for surgery…the bike was dusted off and tires filled with air to support what would become my favorite activity to get into better physical shape. We have some open desert trails just outside the neighborhood and I began to know them very well, to the point where navigating the odd rattlesnake, or watching ducks in a small, sheltered pond was a welcomed distraction on my rides. Olivia and Aidan joined me a couple of times as we made our way through circuitous and ruddy, worn dirt paths. Even the weather cooperated. I was able to get a lot of riding in before the scorching and unbearable heat of the Phoenix summer hit…one of the hottest summers ever on record. Through May and June, I toughed it out and the bike became my weapon of choice. I was still dealing with my ulcers and stomach pain, but the fatigue had subsided and I was only crashing in the mid to late afternoons and early evenings. I had become a great fan of the afternoon nap…an activity I had always avoided because they were perceived by me as being unproductive and usually wreaked havoc with getting to sleep at night. The living room couch in the glow of the afternoon sun became a favorite spot. 

I had additional scans and blood work scheduled and completed on June 2nd and follow up appointments with Dr. Sonbol and Dr. Moss separately on June 3rd. Dr. Sonbol was his usual, positive self, immediately going into the results of the labs and scans. It all looked good and his demeanor was of one who expected nothing less. He confirmed that as far as he was concerned, all had gone to original plan and aside from the uncertainty of when (not if) we could schedule surgery, I was ready to go – I was ready to go now, but appeasing me was really a small consideration considering what was going on in the world (my thoughts, not his). Dr. Moss would make the final decision and he was up next on my list of appointments. He greeted me with a huge grin, encouraged by my physical appearance, and the results of all my labs. He didn’t know me before the wrinkles and bags under my eyes had become more pronounced. We went through a series of questions on how I was feeling, and other physical evaluations. Then, like a prepared soccer coach, he began to lay out the game plan and carefully walking through what he was going to do, using his models of the human gastrointestinal system on the wall. This time however, his plan came with an important caveat. ‘I tell you this based on the information that I have. Once I am inside you, that could change…we’ll cross that bridge once we are in there’. He smiled broadly and said don’t worry my friend, you’re going to be fine. Confident and skilled – a combination I welcomed. We bumped elbows and he said his staff would be in touch with next steps and a date. It was about 2 weeks later that the good news came; surgery was scheduled for June 30th. Relief was an understated emotion. The next major project was scheduled, the right team to execute was in place and any outside risks were being mitigated. It sounds cold, but it made it all bearable. The next two weeks were business as usual except for the mandatory Covid tests through the nostrils – not fun, but hey, whatever necessary at this point. Eat, sleep, rest were being taken care of, but physical activity became limited as the abdominal pain needed to be managed carefully. Regardless, I was ready to go. I fought back any doubts or fears quickly – believe me, they came and if I had let them fester for even a minute, I was afraid of the possible mental spiral that could come…I wasn’t going to let that happen. 

June 30th could not come fast enough. I was scheduled to check in very early – I believe it was 5:30 AM. Alex and Olivia had come to see me off and Aidan and Allie were up extra early. I was filled with nervous energy, but it was all positive. This was going to be a great day. As Steph and I got ready to leave, I said goodbye to the kids, it was the first time I had hugged Alex in almost 5 months. 

We checked in, surrounded by a few others who awaited their big day. Steph and I held hands with a nervous, gentle grip until they called my name. A hug and a kiss as I looked into her eyes – it was all the strength I needed to proceed. I sat in the prescribed wheelchair as they brought me to my prep bed. I was surrounded by others in various states of preparedness to go into their procedures. Again, the people who helped prepare me gentle, encouraging, communicative; every step was explained leaving nothing to my ability to interpret and misunderstand. I was given a gown and no slip socks, plastered with ulcer preventing pads, strategically placed to ensure that those would not be an issue. I waited patiently as various nurses and other techs came to insert IVs into my hands, my chest and sometimes just to make sure I was ok. Soon, I was helped into a prone position and they began to wheel me out. The nurse looked down as I was being wheeled out and said I shouldn’t worry. His partner had the same surgery last year… “Dr. Moss is the best in the country at this sort of thing.” I smiled through my mask. I didn’t make it to the operating room before I passed out. 

I awoke to the nurse’s greeting as she meticulously was checking, configuring and monitoring the various tubes in my hands, chest and in particular two tubes coming out through either side of my abdomen. The worst part was the tube that was coming out of my nose and was definitely down my throat. It was removing fluids from my stomach and was definitely not unnoticeable. I was groggy, but any pain other than the tube passing through my throat, was effectively suppressed by the drip that made its way into my hand through a tube. I had been in surgery for about 10 hours. I drifted in and out of consciousness until they finally let Steph come into the room – relief. She was told the surgery had gone very well and that Dr. Moss would be in to explain. We were lucky. At this time, they were letting one visitor in for a maximum of 8 hours a day. Steph took on most of those shifts until she had to give way to the pressure of the girls wanting to come in and take their turns over the next nine days. 

Simple diagram of the change after almost 9 hours in surgery

Dr. Moss had come in wearing scrubs and that confident look that was a welcomed greeting. He proclaimed they were very successful. While the tumor hadn’t really shrunk during proton therapy, the actual sphere of cancerous cells had been burned down within the tumor. He was able to salvage most of the pancreas except the head – good news as this would keep me from having to take insulin for the rest of my life. They did need to remove the lower part of my stomach as they reworked all of the plumbing. They also removed 37 lymph nodes from the area – only one turned out to have had cancerous cells which was great news. The cancer hadn’t reached them. There was no visible disease outside of all the resected areas. THERE WAS NO VISIBLE DISEASE OUTSIDE THE RESECTED AREAS. The doctor picked up a whiteboard marker and proceeded sketch out a diagram on the glass wall in my room of my organs and how they had changed. I watched as he deftly drew it out, just like a network diagram discussion I had sat through so many times during my years at American Express: showing what was removed, and rerouted. The majority of his time in surgery was spent resecting the tumor, layer by layer away from my hepatic artery – what he had consistently noted as the riskiest part of the surgery…I didn’t bleed out, so I was impressed. He told me to rest, no food yet, and that his team would be in to see me as he would be out for a few days. He was happy, Steph and I were happier.

Ice chips became a glorious treat over the next 72 plus hours. I was being feed intravenously and could not drink water, so ice chips were a limited by welcomed joy. While I didn’t feel a lot of pain, the restrictive nature of my staples, and the damn tubes coming out of my nose and pressing on the inside of my throat along with the two that were draining fluid from my abdomen were reminders of what had just happened. However, it was time to move. First it was getting to the bathroom by myself. Then it was a walk around the central nursing station and back to my room. After a couple of days, I began to take laps around the unit while navigating the many tubes and bags carefully hung up on the IV pole – my travel buddy. Every day I increased the number of laps and the time spent sitting in a chair and not the bed. Dr. Moss and his team made regular visits, checking my incision – 27 staples on the outside and who knows how many yards of silk sutures inside. I was feeling stronger and couldn’t wait to start eating again. That wouldn’t happen until they could get the tube out of my nose and throat. It was still draining fluid from my stomach. On the sixth day, Dr. Moss had come in to check on me. I told him that I had been moving around pretty independently and was hoping I could start eating soon. He looked at the fluid coming through my nose tube. Give me a minute he said, I have an idea. He left and said he would be back and that we would be taking a special kind of x-ray to see what was going on in my gut. 

He had returned a while later, saying he had it all arranged, he would meet me down there when it was time. In the meantime, sit tight…where was I going to go? An hour later the nurse came in to review all the required checkpoints, she said they had arranged for me to go down to radiology and an orderly would soon be there to help me. As I was wheeled down, it was nice to be out of my room, even if it was to roll through the antiseptic white halls of the bowels of the hospital: the place where they kept all the very cool and expensive equipment. I was greeted by a radiologist and the head of radiology. They almost seemed excited and then I came to learn that it was very rare for a doctor, much less the head of a department to come down to observe their work…on top of that, it was Dr. Moss! I was helped into a white hospital gown and asked to drink a thick, oily, clear liquid through a straw to prepare while we waited for Moss. In the meantime, two other technicians joined the party. Once he arrived, he also seemed excited, greeted all in the room as they introduced themselves. ‘Ok, let’s get going!’ 

Dr. Moss’ words prompted everyone into position. I was gently guided to stand up and walk over to a platform in front of some very intricate looking camera equipment, handed another cup of the viscous liquid and asked to drink only when prompted. Two of the technicians retreated to the main control panel behind a glass wall. Dr. Moss, the radiology head and another tech dawned leaded vests. They fired up the apparatus and I was asked to drink more of the liquid. The screen in front of me showed an image of the insides of my torso in black and white. As I drank the liquid, I realized their attention was on watching the liquid make its way down my esophagus, into my stomach and through my bowels…remarkable. ‘This is great news!’ Moss exclaimed, then he came over to me and pointed out on the screen that everything was moving as it should, without obstruction. We could remove the tube nose tube. He patted me on the shoulder and said, I have to go and as quickly as he’d come in, he was off to his next thing. Everyone in the room smiled and the head of radiology followed the doctor out of the room. I was moved back into my chair and awaited my chauffeur to get me back to my room. 

The nurse had followed the orderly in as she dropped me off and asked how everything went. I think it went very well, explaining that I was excited to get the tube out. Dr. Moss came in about an hour later with his team and explained in more detail what had just happened. The tube was there to make sure my stomach emptied of any fluids, bile etc. until my insides were ‘awake’ enough to handle foods naturally. Now we could remove the tube and allow me to begin liquids and soft foods and observe the next important step to my recovery. It seemed like the tube was fifty feet long as they pulled it out of my nose. ‘Trust me’ he said, ‘I had to be sure because as bad as it is coming out, it would be worse if we had to put it back in.’ I wasn’t going to complain, bring on the broth and Jello and anything else they would allow: and they did. The next few days were filled with testing how much I could eat, waiting for nature to take over and even climbing a few flights of stairs. I was feeling great. The rest of the time was filled with visits from Steph and the kids (still one at a time), watching movies and reading my books when I was alone.  

It was day nine and I was hoping we had checked all the boxes, so I should be getting a release date soon. As far as I was concerned there was no reason to stay. One of the surgical team members had come in to check my wounds and do a quick assessment of all that was going on just before lunch. Hopefully, I asked her when she thought I could go. ‘I think you’re ready. Let me meet with the team and get a confirmation.’ A couple of hours had passed, and she came back in with another member of the team. ‘Ok let’s get you ready to go.’ Right now?  I was all of the sudden, both excited and a lot tentative. All they had to do was get the tubes out of my abdomen, have the floor team do their thing, get my meds ready for taking home and I could go. Alex was with me that day and I knew she knew that the tube removal would be ‘interesting’. They asked me to hold on to the bed rails and take a deep breath. All I will say is that the removal of the nose tube was a walk in the park compared to this…and they had to do it twice. After I caught my breath, I released my grip on the bed and sank down into the mattress. I was free. Alex knew that was not a good ordeal, but her nursing instincts wouldn’t let her turn away…within the hour, I was cleared for release. Steph had come to pick me up and just like that, phase 3 was complete and I was out of the hospital. After nine days, I was going home. Cut open, rearranged, bruised and never feeling better. 

Over the next few months, I focused on my physical recovery, getting back to a somewhat normal diet (including potato chips and ice cream). While I couldn’t eat as much as I used to in one sitting, everything was staying down – except salad and kale. Dr. Moss told me that wouldn’t be fun and although I tried, it looks like kale is just not for me. When the physical aspect of my recovery became of little to no concern – I was restricted to the amount of weight I could carry for the longest time – it suddenly hit me…now what? 

While I was officially in the surveillance phase, how was I going to spend my days? What was I going to do with my life? I had read David Brooks’ Second Mountain and at this point, I was expecting to have come upon some exciting revelation of how I was going to take this opportunity to save the world, or at least a part of it…it wasn’t coming. In fact, I had never felt more stuck. After the last year, where my focus had been on my therapy, my surgery, my recovery and helping my family with the still present grief of Ben’s death, I didn’t know what to do. Am I wasting opportunity? Am I making the most of my relationship with my wife and kids, my extended family, my parents and siblings? Was I confronting my thoughts and demons, bad habits and inner voices with a renewed outlook and a bright new perspective? Some days I was, other days have been a struggle. I felt the almost unavoidable waves of melancholy or even sadness. I had fallen into old routines, sometimes lucky enough to catch myself, other times, frustrating those around me. Add to this situation the restrictive nature of the pandemic and I found it hard to break free. What hadn’t I learned? What cosmic message had escaped me? Where was my second mountain? 

The time finally came for my first set of scans, a review of what was going on inside my body post-surgery. This would be the first of many over the next five years. My CA-19 had crept up to 37 from 8, a small spot was found on my lung…panic. Dr. Sonbol assured me this was normal for the CA-19 and that the spot would be reviewed carefully; we would take another look in about 6 weeks. Normally he would wait a little longer, but he knew I was stressed by the findings. The wait time had passed. After a lot of worry and anxiety, carefully masked to keep everyone but Steph, who was with me during the review, it was time for the next appointment. Dr. Sonbol, came into the room and although he was masked, I knew he was smiling. The results were great, he exclaimed as he sat down. The blood marker had come down to 6 and the evil spot had disappeared…disappeared. However, he pointed out, my thyroid levels were still very low with little to no change from the last set of bloodwork. He had brought a colleague in with him, and her first question was, do you cry? I was a little embarrassed by the question, but I knew what she meant; those periods of melancholy and depressive moments usually resulted in me crying, sometimes prompted by whatever was on TV, a passage from a book or a song in the background and sometimes, the feelings came totally out of the blue. This is a symptom of hypothyroidism, she said. You can feel sad and even depressed often. I was told to follow up with my general practitioner and work out the specifics, but in the meantime, I was told to increase my daily dose of the current thyroid medication…it’s amazing what you can miss when your focus is elsewhere. I started the higher dose of medication the next morning. I was diagnosed with hypothyroidism about 7 years ago, just after I quit smoking. Hypothyroidism saps you of energy and wreaks havoc with your body function and emotions. My surgery had disrupted my system so much, my medication needed to be recalibrated. After I was first diagnosed, it took me about three years to get my thyroid medication to a point that it was being effective. I thought most of it was because I really wanted a cigarette, but it was more than that. Now that I am on a higher daily dose, I am beginning to feel much better. However, there is more work to do…I still have to deal with me. 

I have to reconcile my thoughts and sometimes self-destructive actions that erode or even smash the calm within and around me. I have to study the lessons that I learned throughout this journey, over the past year. Never before have I understood more than now that the destination is far less important than the journey that gets you there. The lessons that are either gently provided or thrust upon you, whether you wanted them or not are the real treasure. I have to heal myself and then, my relationships at a cellular level. As far as I am concerned, this is my second mountain for now. I am not sure what the next year will bring. The future never offers itself up a moment too soon, it’s all guessing really, so better to live in the precious moments you are given. In the meantime, I’ll be spending as much time as possible amongst the bluebirds, cardinals and quail to sort it all out. I know that some days, I am clearer now than I have been in a very long time. I cannot change the past, I will not predict the future, but I know I want to be part of it. So, for now, I will focus on listening to my heart, ignore the demons that try to chip away at its integrity or drown out its voice, and love those around me as much as I can for as long as God allows me. 

I appreciate you taking the time to read my story. This disease and the impact it has had on me and my family over the past year is just one of millions of struggles that have gripped us all in one way or another over the past year. 2020 has ignored no one with whatever set of challenges it has brought, and whether we know it or not, this year has forced us to slow down and take a closer look at what is happening around us. I know for me, that message took a long time to sink in as I was wrapped up in the immediate focus of my disease, but now that has changed. It is time to slow down, to really observe the world outside of myself. It’s a beautiful world, currently going through some things, and if I learned one thing. it is that the ability to not lose hope, might mean the blessed opportunity to seize that next moment; a reminder no one should ever take for granted. Even when you forget yourself, who you are and where you stand, always try to remember that precious moment you have been given. I hope to share more stories of this journey and appreciate you being part of this one. Love. 

Trimming the bushes in Cordes

9 Comments

  1. Rob. What a great writer you are. I think you should look for a publisher. Your words and experience could help a lot of families dealing with any kind of illness. I think it’s great that you are bringing us all on your journey. I for one have learned a lot. Thank you so much for sharing!

    Liked by 1 person

  2. Rob, it’s a privilege joining you on your journey… feeling your pain struggles, and watching you and your strength grown and lead you! You’re an amazing man, and I pray for you daily.

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  3. Rob,
    Thank you for sharing your innermost thoughts and feelings with us. It is a blessing to me to know that you are doing so well and I do hope to get to see you in 2021. What a year for you and the entire world. Having gone through six months of hip and back pain from March to September; and couple of tough weeks after my hip surgery Sept 22, I can definitely relate to the emotional toll that pain and uncertainty takes on our psyche. I pray for you that you continue to have positive results and look forward to reading your first book. You are an amazing writer. I rarely read anymore because of dry eye, but I literally could not put this down.

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    1. Thank you Susan. I’m sorry to hear you had to struggle but hope you’re doing better. It has been such a tumultuous year in every way, keeping it all together but I definitely got by with a lot of help from family and friends. I do hope we get a chance to see each other this year. Cheers.

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  4. Rob,
    I work with your daughter Alex and she’s been helping me through my dad’s recent diagnosis with pancreatic cancer. We seem to be on the same trajectory as you, just a few months behind. You are the reason we switched to Mayo initially and are seeing Dr. Moss for his potential surgery. Thank you for sharing your story. As you know, there aren’t a lot of hopeful stories out there and yours, although very sad at times, has given us hope and has allowed us to know what to expect throughout this process. I appreciate your vulnerability when sharing. Thank you!

    Liked by 1 person

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