Just when it gets better...it gets worse.

My Battle With Pancreatic Cancer: Part 4

"The gem cannot be polished without friction, nor man perfected without trials." Seneca

‘Roid Rage’…and the uncomfortable sadness

I’ll be the first to admit, I’m not the easiest person to live with; I have been known to be critical, combative, obsessive, a little over-bearing and sometimes a pain in the ass. Put me on steroids and make me sick most of the time, well I was becoming a whole new kind of special. My focus had to change. I was not my disease or the drugs that were trying to save me. It wasn’t until December and January that I had decided, any optional medication had to stop.

Side note: after my very first chemo session, somewhere there is a picture of my father and I, at the bottom of my drained pool, finishing the clean-up – I had my portable infusion machine strapped on and a mop in my hand. It was a fair description of the Panacci way: adversity is squashed by hard work – that didn’t last too long, but it felt great while it lasted.

I had to manage my symptoms from the chemo with more meditation and prayer instead of medication. I began to spend more hours on the couch or in the backyard, staring at a square patch of fabric or the roses until the nausea went away. I became proficient at breathing through whatever was washing over me. I would wake up and immediately turn to reading to distract me from my own irritability. I do love the fact that I have read so much more than usual during this time. I had pulled out books that I hadn’t read in a while, added a few new ones and focused on a couple of poets to get me through. I’ll include my chemo reading list at some point. It was hard not to go back to the Lorazepam, Ondansetron, Montelukast, Prochlorperazine, Loperamide, Dexamethasone, Oxycodone or whatever else I was taking. I couldn’t deal with the negativity they brought along with their relief.

I need this to be clear: I am not saying that everyone would have the same reaction as I had to these medications, but I do know what they did to me. I will not say that I overcame nausea and the weight loss that comes with the other two symptoms without the help of pharmaceuticals, but the reactions I was having, began to become more detrimental than helpful, so I tried alternatives. When nausea and neuropathy became really unbearable, and breathing or reading weren’t working, I turned to more herbal remedies that helped. Even though those had their own side effects, they were much easier to handle than the pharmaceuticals…and they made me laugh…a lot.

The cold of December brings a crisp reminder to cherish the warmth of loved ones.

Annonymous

Despite everything that was going on, I believed early on in December of 2019 there was an undercurrent of optimism in our home. There was a plan that was being executed and we were following it as best as we could. Strangely, I even enjoyed the process of putting up the Christmas lights for the first time in years. Now, I did them on a good day and made sure I took no medication before I went up the ladder. It was the first time I had put up lights without the help of a few beers. My dad made his way back to Scottsdale for a while, friends were coming over and helping us with meals and just spending some time laughing and being together. Allie and Olivia were busy working and going to school, Aidan was wrapping up his first semester and Christmas was coming. I was so proud of all my kids. However, the event of the month was Alex’s graduation. Years of hard work were about to pay off for her and she would have a job offer lined up before she even graduated. We celebrated by attending her pinning and graduation ceremonies at GCU and then having a party at our place. We planned it so that it took place during my good days and it really was a good night with everyone who attended. I was exhausted, but my spirits were lifted. I love a good party and the energy it brings, even without alcohol. It felt so good to be around my family and friends in this setting. I needed a good time and that was a wonderful event to celebrate.

I was eating well and trying to stay healthy when, I got too cocky. I needed to get a flu shot and couldn’t avoid it any longer. I had planned to venture out of the house – I felt great and it had been a while since I was out alone. I am definitely an extrovert most of the time, but I do like to be alone once in a while and that had not been available to me for several weeks. Don’t get me wrong, I love having people around, especially my family, but I needed some space too. Before stopping at the Walgreen’s for my shot, I made a stop at the post office inside the Ace Hardware near our home…as I write this, I have no idea why. It was close to Christmas, so the line was a little long, but I had time. As I waited, I began to notice how close people get to each other in a line, it was the Seinfeld episode unfolding before my eyes – ‘Close Standers’. In ‘a second’, my knees began to throb, and that pain started to creep up into my pelvis, as if someone just punched me in the lower abdomen…then the dizziness kicked in and I was not feeling very good at all. I was next in line and was trying to ignore whatever was happening. As I left the store, thunder clapped, and the rain began to fall as I made my way to the car, but not without getting wet. The drive home was slow because of the rain and thank goodness, the dizziness was getting worse. I pulled into the garage and went straight for the couch with a blanket; just breathe, I thought. Steph checked my temperature and we called the Mayo triage line. I was hitting 100 degrees and that meant a trip to the ER…ugh. They swabbed my sinus, filled me full of fluids, shot me up with Tamiflu and sent me on my way a few hours later. No mask, a compromised immune system and an overconfident patient – that would have been my comment for the file if I was the attending nurse.

A beautiful Christmas

The rest of the month was much better. All the gifts I needed to purchase came from Amazon since I was not taking a chance anywhere out in public. Opening presents and a huge breakfast filled Christmas morning, then, as if on some unspoken queue, everyone flopped on the couches watching Netflix, eating and relaxing…this continued until about midnight when we finally decided to pack it in. It was a beautiful day. Movies, documentaries, cookies and Steph’s home-made chicken enchiladas…delightful. I cannot remember holding the kids’ attention for that long during any Christmas Day and it truly was magical. The Family Stone, The Two Popes, The Lunch Box Gang, a movie about Judy Garland and so many more. There was no rhyme or reason to what was being watched, we were just together and that’s what mattered. It was the most relaxed Christmas Day ever.

New Year’s Eve came and went at an even slower pace. The kids were all doing their own thing and Ben joined Steph and me. He was staying over, and it was no surprise when we both passed out on the couch well before 10:00 PM…Steph was stuck in the middle trying to be festive, I think. I can’t really remember. I had an infusion session on December 30th so I wasn’t dancing on tables and I hadn’t had a drink since early October. I was a lump on the couch and not even the start of a new decade was going to change that, unfortunately. But 2020 was here and the general consensus was that more than a few of us were ready for 2019 to be over.

2020: Send it back, please.

The political environment, and the rumors of a possible virus out of China may have been all over the news, but they were not front of mind during those first couple of weeks of January. Ben was struggling with his dialysis and we were urging him to come live with us; we would get him lined up with a dialysis unit down here in Scottsdale instead of him having to go to Prescott. We were not impressed with the level of care he was receiving (remember his cardiologist) so we figured things had to change…we just needed to work out logistics. Aside from New Year’s Eve and Day, he wanted to be at home, despite our urgings. He was getting weaker and we knew he wasn’t watching his diet. Earlier in 2019, Steph had booked a few days away for the family during the second week of January, at the new Great Wolf Lodge that had opened in Scottsdale. It was unlikely that I would go because of the risks, so we decided that the kids should still attend and have some fun. Even though they were older, a few days out of the house and in a happy environment would be a great thing. Check-in was scheduled for the 9th of January, and I was going to have the results of my latest CT scan on the 8th. We anticipated that we could be celebrating and the positive thoughts were focused on praying for a shrinking tumor.

On January 7th, while in the throes of discomfort from my last infusion, I felt it again; the creeping soreness and fever had come back. My joints ached and I didn’t know what the hell was going on…well, I did. I was getting sick again and I was worried that it would screw up the schedule for my scan the next day. I was pissed and scared and watched as my temperature hovered around 99 degrees. I was not going anywhere if it didn’t hit 100…then it hit 100 and Steph brought me back to the emergency room. The lobby was packed with people coughing, sniffling, even vomiting into blue bags provided by the nurses. As one nurse took my blood pressure and temperature, she apologized for the fact that they were jammed – a super busy flu season was keeping them constantly busy. The good thing about being immunocompromised is that they don’t leave you in the emergency room waiting area too long. Within an hour they determined that I picked up another virus, but they couldn’t tell what it was, even after another brain scratching nose swab. Fluids were pumped into me and I waited. The attending doctor had assured me that this shouldn’t affect my scans the next day as it wasn’t as severe as it felt. Relief: the last thing I wanted was any delay of either those scans, future infusions, anything. I lay on the emergency room table and I believe it was about 8 PM when my phone rang: it was Ben.

At first, he sounded somewhat normal for how he was lately, but I could tell something more was wrong. He kept saying he wasn’t feeling well and then came out with the fact he wrecked the truck on his way home from dialysis. After more probing, he told me he had jumped a curb, but it was dark and he couldn’t tell if the truck had been damaged. He was able to drive home but he just wasn’t feeling very well. We sent Allie to pick him up and get him back to our place. He was not in good shape, and the report from Allie about his house convinced us he was not going back up there until we got him balanced and back to some sort of normal. He was staying whether he wanted to or not.

Good news…

It was January 8th, I made it to my scans at the other Mayo campus in east Scottsdale. They were CT scans with contrast so that means, as you are being imaged, they fill you with fluid that light up any areas of concern – they literally glow. This will have been the third time I have gone through this process and it is frankly one of the weirdest procedures I had ever experienced. The actual imaging is not a problem. You lay on the table, shirt off, pants down to your knees and hold your breath as you go back and forth through a big donut shaped x-ray machine. The weird part is the contrast. Once they release it into your veins, the familiar metallic taste of heparin and saline fills your mouth and throat. Then, it feels as if gallons of warm liquid fill you up inside, like a wave from your neck to your pelvis…surreal, gross, and just strange. The first time I had this done, the technician described it as ‘feeling like you wet yourself’…really? Regardless, I was excited to be done and couldn’t wait to get the results. Mayo is absolutely great about getting results out the same day. Usually, they are posted in the patient portal, but the scans required my oncologist to explain them so we made our way to his office. He came in smiling as usual, sat down and without hesitation, said “you’ve done very well” like I had just passed a history test. He explained that the tumor had shrunk to 1.7 cm from the 3.5 cm originally scanned when this all started – HALF!! It shrunk by half! Whatever I was going through physically and emotionally, it was all worth it to hear him say, ‘it shrunk by almost half!’ I was literally on cloud nine and Steph just looked shocked. He explained that we would stay the course with a few more infusions, then we would plan for radiation. As he left, Steph broke down in tears of joy, releasing a lot of pent up tension waiting for this moment. I had no doubt it was working. The poison they were injecting me with and the way it was making me feel, had to have some upside…it was working. We couldn’t get home fast enough to tell the kids: good news from the doctor, then a few days away for them to celebrate this milestone. There were shouts and tears and lots of happiness when we got home. We decided we were going to celebrate with cake! Allie went to the store for at least two bakery cakes and ice cream. The celebration was short lived.

Ben was here and although he too was smiling from the news, he was visibly weak. We all sat in the family room until everyone had gone to either prepare dinner or pick up cake. He and I tried to talk but we were both worn out. The contrast always has some dragging effect on me. I usually feel more tired and nauseous and today, that was on top of being in the middle of my last chemo treatment. He and I had no energy, but it seemed comforting just to sit together, slumped on the couch. I remember thinking, we needed to get him back to his doctor or any doctor as soon as possible tomorrow. “Dinner’s ready” was eventually shouted from the kitchen. Both of us slowly worked our way up from the clutches of the couches, but as he rounded the corner, I could see Ben’s legs give out and he slowly sank to the ground. Everyone rushed to his side and gently helped him into the other room; he was annoyed with the fall and all the fussing, but he seemed ok. He had hardly a bite of dinner but did manage a couple of bites of cake before making his way back to the couch. Steph and Alex agreed they had to get him to the hospital. The hours leading up to the morning were rough. Ben coughed incessantly, and in between bouts, argued with Steph throughout the night and early hours of the morning that he was not ready to go to the hospital. I heard some of the conflict from my bed upstairs, but I couldn’t move. Morning finally came and Steph was not going to listen to his fight to avoid the hospital; he had to go. The kids helped get him into the car and Steph had taken him to be checked out. The kids then began to prepare for their check in to the lodge.

What now?!?

The next 48 hours quickly became another mega loop on this fucking emotional roller coaster. My mind was a blur, so the facts I am relating are from the detailed notes Steph kept. I could never relate in words, the emotions that were experienced during this time. Every blood pressure test, bacterial tests, everything had been captured. Ben’s blood pressure at admission, 89 over 32 and his breathing and coughing were becoming even worse, if that was even possible. Doctors thought he was anemic and needed a blood transfusion. They were admitting him immediately and taking blood cultures to check for bacterial infection. Steph stayed with him most of the day and night while Ben urged her to go home and be with me. He was getting more confused about what was going as doctors and nurses worked on him with great urgency. Looking back at it all, we often wonder if he didn’t have one of the early cases of COVID-19. Steph said his cough was gut wrenching and blood, along with some orange substance was presenting itself in his sputum. As day turned to night, Ben continued to urge Steph to go home. It was later in the evening when she asked him if he would be ok if she left, he nodded approvingly for her to go. Their last words to each other: Steph said “I love you” and squeezed his big toe. “Love you too kid” he responded. She left the hospital.

I woke up in the middle of the night hearing Steph on the phone with the doctor: it was just after 1 AM. He was letting her know that Ben had agreed to go on a ventilator, and he was currently on life support in a chemically induced coma. The coughing and hacking would not subside and that was their only option. Tests showed he may have a significant blood infection and could go into septic shock. His blood pressure was so low, they had him on maximum pressers (medication) to keep it beating. They said he needed time to rest, but when Steph asked how long he would be intubated and on life support, there was an inaudible response on the other end of the phone, then everything went silent. ‘At least two days, maybe seven, if he wakes up’…If? ‘His body is very sick’ the doctor responded.

Heartbreaking…heart smashing.

January 10th, 2020: as the sun was rising, I was accompanying Steph to the hospital; I was gloved and masked up for safety. The kids were at the Lodge and we had picked up Steph’s sister Kelly to take her to see their father. I vividly remember walking into the ICU room, Ben was unrecognizable, and I knew right then, he was not going to get better. He was heavily sedated, and the doctors were struggling to explain what the hell was going on…a virus was attacking his blood, his oxygen and his heart. In turn, his body was trying to protect his organs so his extremities were suffering. His hands and feet were turning gray as his blood focused on protecting his organs. I stayed for as long as I could, but then had to leave. At 11:39 AM Ben’s heart monitor alarm began to chime louder as he hit 178 BPM…Steph shouts, “holy shit” and stands up, thinking his heart was going to explode. A flood of nurses and doctors begin appearing on both sides of the door as Steph holds his hand and watches his heart rate monitor. Ben’s brother Bill, niece Jennifer, daughter Kelly and her boyfriend Kyle surround him as Ben’s breaths begin to get longer and deeper. I remembered it was close to noon when Steph had called. “Please pick up the kids and bring them to the hospital; they’ll be waiting for you at the front of the lodge. Without hesitation, and with every bit of strength I had, I got in the car and made my way to the kids. As we hurried to the hospital, the attending nurse confirmed with Steph that he was passing…time of death 11:57 AM.

The doctors confirmed Ben had enterococcus pneumonia which caused him to go into septic shock and further strained his already weakened heart. At that very moment, everyone’s heart cracked.

The next few weeks were charged with emotions at the highest level. My oncologist agreed to some extra time off chemo so I could participate with funeral needs and attend the ceremony in a somewhat lucid and participative state. Steph went into extreme task mode: a process I had watched her sink into when her grandmother passed. Her focus turned to getting things done. She began to organize the ceremony, contact Ben’s coworkers, friends, and family. She began organizing pictures for the memorial, sorting his bills, searching funeral homes, contacting the cemetery and whatever other affairs needed to be handled. I knew it was her way; whether to avoid grief temporarily or simply ensure she honored her father by being collected and responsible. Steph had already lost her mother at a young age, now she was orphaned, and I knew the pain inside her was screaming to get out. Nothing could have prepared anyone, especially Steph for the incredible void left by Ben. She was devasted and her grief, deep and painful…it still is today.

There is so much to say about Ben. He was definitely someone you were glad to know. He could strike up a friendship and conversation with anyone and he welcomed me into his life without hesitation.

The funeral was a beautiful service attended by so many of his friends and family, many who had travelled to come pay their respects. Cousin Jennifer had arranged to have the reception at her home. Steph’s uncles from her mother’s side helped with the catering and the celebration of Ben’s life was a comforting event as everyone gathered to remember Ben with food, drink and surrounded by familial companionship. However, once the funeral is over, and the celebration of life wraps up, loved ones are left with their own thoughts and memories, along with the ‘what ifs’ and the ‘whys?’. There are times when your heart is so broken, you can never be convinced the wound will heal. Neither time, nor activity will can suppress the sadness and as each day passes, you swear the wound is only growing deeper…we thought life for our family had changed significantly up to that point…we had no idea; the impact of Ben’s death reverberated throughout every fiber and we would deal with the compounding pain and stress over the coming months.

Thank you for taking the time to share this journey. I am sharing it in parts because so much has happened over those 9 months. I have more to share but as I wrote this, I was preparing for surgery. My plan is to deliver the rest of the story as soon as I can…from the very beginning of this unwanted journey, I have believed that not only could I survive this, but that I had to because I wasn’t ready to accept any other alternative. It has been a blessing to be in the care of the great doctors, nurses and support staff of the Mayo Clinic in Phoenix as well as to be surround by the loving and patient support of my family and the encouragement from all of you…thank you, and we’ll write to you soon. God bless.