I Didn’t Cry Tomorrow

Warning:  You are about to enter Paula’s Pity Party, fueled by a couple of stiff drinks. Buckle up and proceed at your own risk!

I start every day with the best of intentions. I can do this. I am strong. I choose hope. I have so much to be grateful for. Then reality rears its ugly head. I’ll be strong...tomorrow.

Only You

Yesterday marked month three of the nightmare that is a cancer diagnosis. We were crushed to learn Hubby’s first chemo regimen did not slow the growth of the tumor in his bile ducts, as I shared in my last post. The new chemo drugs added a level of side effects making day to day life even more challenging. My OCD – Obsessive Cleaning Disorder – may be a factor in the discomfort I am feeling over the hair loss that Hubby is now experiencing! His muted taste buds, mouth sores, loss of appetite, weight loss and extreme fatigue are the larger issues, but Hubby’s shedding has surpassed our goofy Golden Retriever Charlie in fueling my compulsive vacuuming!

The physical effects and visual reminders of chemo have made it much more difficult for me to envelop myself in a cloak of positivity. Hubby doesn’t dwell on it as I do. He’s still working. His clients are aware of his health “issues” on a need-to-know basis. He helps people. Solves problems. Gets clients through their personal crises. He has power in his work life that is nonexistent in his cancer battle. I see his strength when he’s working and feel the sadness seeing the same man – smaller, weaker, vulnerable – asleep in his favorite chair for a mid-day respite. I love him. I admire him. I secretly cry seeing him change before my eyes. As much as I would love for him to close his practice, I completely understand why he hasn’t. And I admire him for his selflessness. My Big Kahuna has no time or interest in pity parties. But me? Not so much…

“Are you taking care of yourself?” My welfare became the secondary focus of several friends at Hubby’s birthday celebration last month. I assured them I was, and turned the focus back on Hubby. At this point in our journey I am preoccupied with his well-being, and that’s exactly where I want to be. But the toll is starting to show. A few extra pounds courtesy of stress eating. Fewer steps on my FitBit, as Charlie can begrudgingly confirm. I’ve put off appointments with a new yoga class, and have a growing stack of unread books. Taking care of me? How can I think of anything but Hubby – and an occasional date with this blog.

Life is now driven by an evil intruder. I sleep with one eye open. In bed I touch Hubby’s hand to gauge his temperature. Our intimacy is a beautiful memory – cancer and chemo have stolen my amorous lover. His breath next to mine is no longer an annoyance, but a precious affirmation of his presence.  Last night as I lay next to him, I focused on the man with whom I have shared a bed for almost 44 years. How many more nights will he be here? I cried quietly, wishing I could turn back time to when we spoke of growing old together.

This week our personal battle was overshadowed by the death of a beautiful young woman. She was Daughter’s lifelong friend. A loving wife, and dedicated mother to two young children. Her nine month battle with colon and liver cancer was – until her final week – one of courage, determination and hope. Yet cancer won. We are heartbroken, and I can’t shake the sense of foreboding it represents for Hubby’s journey. I shed more tears, and felt guilty at the same time. Hubby and I have been married more years than our sweet friend had lived. In typical Pitiful Paula fashion, I shamed myself for overlaying Hubby’s future on her heartbreaking loss. She never gave up hope. I shouldn’t either. Why is it so hard to stay positive?

We have lived in the “for better” bubble for longer than most couples could imagine, and now that “or worse” has been thrust upon us, I’m all in as Hubby's alpha-wife - until I’m not. Last week was one of those “not” moments. Without warning, I was struck with a rare, uncontrollable moment of tearful sadness in Hubby’s presence. It caught him - and me - by surprise. As much as I tried, I couldn’t spare him from my meltdown. As always he knew just what to say. Dropping everything at his desk, he asked, “Do you want to sit on my lap and cry together?” In that moment, I became five year old Paula. All I could do was nod as I headed for the safety and security of his outstretched arms, and sobbed uncontrollably for the first time since The News. I said everything I had been feeling the past three months. “I hate this. I am not ready to lose you. I don’t know what I am going to do without you. I’m scared.” The flood gates had opened and he did what he has done forever. He told me everything would be okay. And although I knew it wouldn’t, I felt better hearing him say the words.

Before The News, I was a naive onlooker to other people’s cancer journeys. Sympathetic? Absolutely. Empathetic? I realize now how much I didn’t understand about what others were going through. Now I think I do. It’s a life lesson that, frankly, I would have been more than happy to have skipped. But as every caregiver knows, I wasn’t given a choice. I am actively seeking a support group to help me deal with the range of emotions that fill my head and heart. I’ll keep wearing the cloak of positivity - and hope tomorrow will be a better day. 

Happy Hubby living the dream. Dodgers Spring Training 2018

My Big Kahuna. Senior year, 1968

50 years ago. Friends first. Lovers later. 

Chemo 911

January 9. After a second opinion confirmed the only viable treatment option for his rare cancer, Chemo Day 1 arrived – a day we actually celebrated the infusion of copious amounts of poison into Hubby. Armed with the information on side effects. Prepared to deal with them head on. Look out cancer, cells, Hubby was ready to FIGHT!

We had received the tour of the chemo infusion center a day earlier, led by Linda, one of the RN’s specially trained to administer toxic cocktails with kindness and compassion (I think I have coined their slogan!). Our lifelong friend, breast cancer survivor and chemo veteran – and one of my Penguins (P3) – had offered to accompany Hubby to his first session, and he and I both readily accepted. Her familiarity with the process was comforting.

Armed with my lovingly prepared snack bag, his favorite pillow and the already packed bag used for those 3:30 a.m. dates with dialysis, Hubby and P3 headed out the door. I would arrive midway through the four and a half hour session, as we had planned in advance. I used the time to undergo my own version of chemical alteration – a date with my hair stylist for long overdue cut and color!

Hubby’s first session went smoothly. I arrived to find him attached to an IV drip, peacefully binge-watching a Netflix offering, while P3 played Words with Friends alongside him in their “chemo cubicle.” After my debrief on all I had missed – including the fabulous news his PET scan showed no additional cancer other than what we already knew – I settled in for the remainder of the session. Hubby was to go home with a second chemo drug administered over the next 48 hours via an IV pump. As they prepared the VHS tape size (remember those?) pump, and locked and loaded the deadly drugs inside, we received instructions for living with the new appendage over the next two days. Keep it dry. Check. Sleep with the pump under a pillow. Check. Expect the pump to sound an alarm when the drugs are depleted, and return to the office as soon as possible afterward to be extricated from the machine. Got it!

Chemo pump in hand - and in bed, and at the desk and dinner table - Hubby was prepared. We knew the side effects to expect. The first ones to surface were jaw pain and hyper-sensitivity to touching, or being touched, by anything cold. Not horrible, but definitely not comfortable. He worked all day, and gave no indication to the outside world that chemical warfare was underway inside his body.

Twenty six hours after chemo had begun, it hit. 4:00 p.m. to be exact. As Hubby was on the phone getting the great news from his nephrologist that his kidneys were starting to do their work, thus putting a hold on dialysis, he excused himself from the call and urgently made his way to the bathroom. I checked off the nausea and vomiting box of the side-effect playbook. Definitely unpleasant, but anticipated.  Hubby was moving into the worst days following chemo, as the doctor had prepared us. He was in bed by six, and I braced myself for a long, worrisome night. My heart was heavy, witnessing my strong, formerly healthy Hubby in such a vulnerable and foreign (to us) condition. I never expected the worst day of this entire experience was about to unfold…

The nausea was relentless. All night and into the pre-dawn hours, Hubby moved from bed, to bathroom to downstairs. He didn’t speak. Just rocked back and forth, quietly moaning and finding temporary comfort in the gentle massage I offered. Daybreak announced itself with a beautiful pink sunrise, and I suggested he go back upstairs and into bed. As we passed the hallway, he pointed toward his office. “The doctor is his…um…..his…” he uttered, confused and suddenly incoherent. He tried again to force out a sentence, clearly frustrated with himself, and with me for not understanding him. There was no box to check in the playbook for this side effect! I was terrified. I know my man, and something was terribly wrong.

What do I do? WHAT DO I DO??? Call the doctor, pray the early hour call will be quickly relayed to the on-call physician, and calmly describe his condition. Provide details. Take notes. Within two minutes, his doctor was on the line, agreed Hubby was in crisis, and calling 9-1-1 was my only option. I steadied my hands and took deep breaths, as I made my first ever 911 call. I talked slowly, voice cracking from the fear that shuddered within me, as I attempted to convey my emergency. I hung up and realized I was still in my pajamas! I could hear the sirens as I raced upstairs to trade my cozy flannel for clothes approved for public viewing - leggings and an oversize hoodie - and most importantly, a bra!! As the sirens got closer, I ran a brush through my hair and hurried downstairs to await the arrival of the cavalry. Somewhere in all of this, I called P3, my personal 911 emergency contact!

I first heard the unmistakable rumbling of the fire engine as it turned the corner, followed moments later by the ambulance. Keep your wits. Tell them everything. Chemo. Confusion. Nausea. Dialysis. Pump. I provided a timeline and my laundry list of symptoms to a polite young firefighter/paramedic who entered the information into his tablet. Two other paramedics with an arsenal of equipment took Hubby’s vitals and assessed his mental state. Within minutes he was on a stretcher and in the back of the ambulance for his second visit to the emergency room in four weeks. P3’s sister had arrived, and became my designated driver. Hubby was in good hands, and P3 had called her sister, who lived nearby, to assure I was too! Upon arrival at the hospital, the nightmare began…

I was escorted to Hubby in exam room 13 - an omen to the horrors that followed – to find him being attended to by a less than compassionate RN whose nametag was not visible. I could choose a more fitting 5-letter moniker, but I’ll refer to her as NURSE. Hubby was flailing in the bed, uncomfortable, agitated, and unable to communicate a cohesive sentence. I became his spokesperson and advocate, giving NURSE my litany of vital information. Dialysis. First Chemo. First Pump. Recent diagnosis. Cancer newbies. She never made eye contact with me, and faced her computer monitor, presumably entering notes assuring Hubby’s standard of care would be met. The ER doctor arrived, and again I shared my laundry list of what had transpired in the last 12 hours. IV’s were ordered for severe dehydration, and blood test results would eventually reveal hepatic encephalopathy – a buildup of ammonia in his blood that affected his brain. He would have to be readmitted to the hospital for more dialysis to remove the toxins that clouded his brain, and more tests to assess the cause.

In the hours that followed, Hubby was treated by NURSE in the ER as a “nuisance patient” - unable to speak for himself; in pain, and fighting to sit up as P3, her sister and I physically restrained him; tugging at the IV; pleading be allowed to relieve himself; unattended for an hour and a half; not receiving the fluids and medication due to an IV that had malfunctioned. When NURSE finally returned to find us keeping weak and incoherent Hubby upright at the edge of the bed again, she scolded us.  “You should have called me!” she barked. We had been – for the past 90 minutes! It went downhill from there…

I finally lost my s#!t when Hubby’s chemo pump alarm began beeping, signaling the completion of the 48 hour infusion. Upset, confused and scared out of my mind, I looked helplessly at the buttons on the pump. I had not expected to be “here” when this moment came. My playbook had us calling the chemo center and driving there for their staff to handle.  I'm sure I looked like a deer in headlights. When NURSE said, “What do you usually do when the pump alarm rings?” I reached the tipping point. “HE IS NEW TO CHEMO. I HAVE BEEN TELLING YOU THIS ALL DAY. I HAVE NO IDEA WHAT TO DO.” Crying. Yelling, Being very un-Paula-like. I stormed out of the room and headed to the main hospital entrance to find someone – anyone – and demand help.

I’m sure I looked like an escapee from the psyche unit! Kind volunteers tried to calm me down, but I was in full on, Terms of Endearment mode.

Getting no help, I stormed back to Hubby's ER room 13, ready to throttle NURSE. Thankfully, P3 had stayed with him. Hubby was peaceful, thanks to the resumption of the IV meds which now included the hours-before requested sedative and pain meds.  The chemo pump had been flushed and removed by NURSE while I was away (I was to learn later that day that ER nurses are not authorized to deal with toxic chemo drugs and pumps, and her casual handling of the pump and residual chemo drugs put us all at risk).

Six hours after it had begun, the ER nightmare would come to an end. Hubby was moved to the oncology unit to begin the dialysis that would have him clear-headed by the next morning. I left late that evening, while  Hubby was still struggling to sit up and yanking at his dialysis and IV tubing - and sadly unaware of who I was. Thankfully he was now under the care of a kind and compassionate oncology unit nursing team. I held my breath as I arrived back at the hospital the next morning. Would Hubby be back from the brink? He answered that question immediately with his first words, “Why the hell am I here again?” Oh honey, have I got a story to tell you. He has no memory of his “lost day”, but those 24 hours I will never forget!

While Hubby was having his "out of mind" experience, I was learning something about myself. It brought to life a quote that friends have shared with me since the onset of this cancer journey.

“You are Braver than you believe, Stronger than you seem, Smarter than you think, 

and Loved more than you know.”

Epilogue: Hubby’s second chemo round was thankfully uneventful, and “pump-less”. He will be put to the test next round when they resume the full course of treatment. 

Hubby keeping up with client email, sporting his fashionable chemo port comfort shirt. 

I wrote the hospital with details of our horrific ER experience, and received back-to-back calls from hospital and emergency room directors, offering sincere apologies, assurances that retraining and coaching of staff is underway, and promises that no patients will have to endure the lack of care and compassion Hubby received. To ALL of the amazing, dedicated and caring (as well as overworked and likely underpaid!) friends and family in the noble nursing profession, please know how much I admire and respect all that you do. This was hopefully a one-off, horrible, no good,very bad day - for the nurse as well as us! 

This experience tested me on so many levels and I while I hope never to relive it, I know I can. Braver. Stronger. Smarter. Loved. And I remain #kahunastrong

I'm Sorry

December 22. The date is burned into my memory. We had been bracing for answers to why Hubby’s health had taken such a sudden and catastrophic turn. The explanation for the sudden onset of acute renal failure didn’t fit neatly into any categories. Initial results indicated cancer, but more pathology was required before the specifics could be confirmed. We would have to await results. The wait was agonizing.

Two weeks later we held our collective breath as we sat, for the first time in either of our lives, in an oncologist’s waiting room. A muted big screen monitor screened footage of snow falling among the golden, shimmering aspen leaves in a serene idyllic mountain setting. A stunning arrangement of pine boughs and poinsettia acknowledged the jolly holiday season. A tabletop held neatly displayed brochures on a variety of relevant topics. Cancer support groups. Caregiver resources. A newsletter offered the BOLD Headline: California End of Life Option Act: Hoping for the Best, Planning for the Worst, and Knowing You Options. We weren’t in Kansas anymore.

Everyone was so positive!! The door to the inner sanctum opened frequently, as cancer patients and caregivers made their way to what, I was to discover later, was the multi-chair chemo center. Smiles abounded. Staff members welcomed patients back, engaging in congenial small talk. A jovial woman navigated her walker to a waiting room chair, smiling broadly under her crocheted cap to cover her hairlessness. “You still have your hair!” she commented to someone she apparently knew from previous chemo sessions. “So far!” he replied, smiling broadly. How could people here be so upbeat? This was an oncologist’s office. Cancer, the most evil, unfair and terrifying demon brought people here, yet they were exchanging smiles, pleasantries and holiday cheer. Christmas was just three days away, and the spirit of positivity abounded in a CANCER office.

Hubby and I were the exception to the light hearted mood. We were moments from the news we had been awaiting. My head was filled with hope - and fear. The “many voices of me” played an endless loop of happy endings, along with terrifying “life without Hubby” nightmares. We thought we were ready to find out….

No one can prepare for the news we received. Hubby’s doctor was gentle but direct. He told us how sorry he was that he didn’t have better news. Outlined detailed treatment options for the rare cancer threatening to steal my lifelong partner from me. Offered details about oncology specialists we should contact for second (and third, and fourth) opinions, and gave us his personal email for questions that may arise over the long holiday weekend. I had stopped trying to take notes, and secretly had my phone voice recorder capturing his words in order to play it back when my heart wasn’t pounding louder than his voice.

Through it all, Hubby listened intently, expressionless. No questions. No overt reaction. He may as well have been listening to a judge pronouncing a verdict after one of his court appearances. His only words to the doctor were, “Man, I’d hate to have your job.” That was it. A few closing comments followed, and the doctor gave Hubby an “I’m sorry” handshake and pat on the back as he exited the room.

We hadn’t uttered a word to each other. An examination table separated our two chairs, making even hand holding impossible as Hubby received the prognosis and time line. We had controlled our emotions in those agonizing minutes. Once the doctor left the room, we stood up, walked to each other and shared an embrace unlike any I could remember. I didn’t know what to say. But he did. Two words defined the man who has put others before himself his entire life. “I’m sorry.” As he received his “sentence”, my protector felt the rush of guilt for spoiling my happily ever after. We hugged as I melted into his still strong embrace. We wallowed in that tragic moment for a mere few seconds, then shook it off and put on our game face. There was no time to waste. Cancer wasn’t taking a break inside my Big Kahuna, and we couldn’t either.

We were unusually quiet as we headed home into the last light of what was a gorgeous SoCal winter sunset. As he drove, Hubby’s first comment was, “You’re going to be fine, I’ve got everything in place for you…” I stopped him mid-sentence. I was not ready. At the same time, I understood my man. Always putting others first. ALWAYS putting my needs first. He was about to begin the toughest battle of his life, yet his first thoughts centered on my future.

We made the decision to invite our son, daughter and their families to come to the house that evening, so we could tell them the news. Christmas was around the corner and our preschool and infant grandchildren were giddy with excitement. The juxtaposition of Hubby’s bombshell and Santa’s pending arrival had to be carefully played. Daughter held her 5 month old daughter, son attended to his 2 year old, happily eating blueberries, and son-in-law kept almost 4 year old son distracted…as their father found the words none of them wanted to hear. Like the doctor, he was brief and direct – and immediately assured them that he was ready to fight the good fight. Everyone guarded their emotions from the littles in the room, who were too young to feel the punch to the gut that followed the announcement. But their faces spoke volumes. Quiet tears mixed with bouncing baby girl and her sweet smile. Blank stares into the unknowns of their father’s future, against the playful banter of cousins happily engaged with treasures in Gigi and Grandpa’s toy closet. As unfortunate as the timing of the news, the joy of children at Christmas would prove to be a much needed diversion...

Christmas Eve was spent quietly, a seismic shift from the typical Hultman Christmas Eve Spectacular of the previous 38 years. Daughter hosted a Christmas Eve Pajama Party for our immediate family – the same party of 8 with whom we shared The News two nights earlier. Hubby continued his traditional reading of The Night Before Christmas to the less-than-attentive toddlers! Son, Daughter and I, on the other hand, didn’t want to miss a word. The significance of this Christmas Eve custom had a new poignancy. I recorded all of it – squirmy, chatty grandkids and all. I pray we will repeat the tradition next year and beyond.

Our quiet, mutually agreed upon giftless Christmas morning started with a kiss. We headed back to Daughter’s home, greeted by oldest Grandson’s announcement that Santa had indeed come, and the inquiry to both Grandpa and me, “Did Santa bring you coal or presents?” I assured him we were on the Nice List which brought him great relief! Daughter, our designated Santa delivered joyfully wrapped presents to their intended recipients.

One – then two – and three packages made their way to me, with the telltale handwriting and tags. “To the Lovely Paula Marie, from The Big Kahuna. To Mrs. H. from Mr. H. To Mom from Charlie (our goofy Golden)”. I could not hold back my tears. We vowed not to exchange presents, yet Hubby had broken the rules. “I’m sorry,” he said. I immediately understood the reason why he had ignored our no gifts pledge. We didn’t have to say it but it was never far from our minds – what will next Christmas hold in store?

In those first few days after the diagnosis, we rode an emotional roller coaster of fear and uncertainty, wistful hope and forced positivity. In the weeks since, we are finding our footing. Hubby feels well enough to continue working, with a few tweaks to his calendar. His kidneys are healing and dialysis may soon be discontinued permanently. His sense of humor is intact - his biggest compliment coming from the staff of his nephrologist's office, "Mr. Hultman, you are my favorite patient!" There have been some terrifying moments too, to be shared in a future post, along with immeasurable gratitude to family and friends for their seemingly limitless support. I don’t think Hubby comprehended how his lifetime of generosity and selflessness touched others. He has been moved to tears more than once – not by the fight he faces – but by the avalanche of kindness, compassion, prayers and support from so many. After one particular act of thoughtfulness, he commented, “People are being so nice,” as his eyes welled up and voice cracked. Wiping away the tears, embarrassed by his tearful moment, he said, “I’m sorry.” Honey, you have nothing to apologize for. You are still the strongest person I know. I promise to stay #kahunastrong

Kahuna Strong - An Unexpected Journey

My Big Kahuna and me. 50 years of memories.

We rang in 2018 together, celebrating west coast New Year’s Eve on east coast time! 3,2,1 HAPPY NEW YEAR!!!! We kissed, and hugged tighter. Longer.  Made a promise to repeat this hug a year from now - something we never felt the need to say before. We held hands, and in that moment we both knew what the other was thinking. Would this be our last New Year?  I have felt the warm touch of his strong hand wrapped around mine for 46 New Year’s Eves. A week earlier I stopped taking for granted the otherwise trivial act of intertwining fingers with my best friend, lover, confidant, problem solver, and father of my children…

In a matter of seconds, on the eve of the long Christmas weekend, I felt the blood rush from my heart to the pit of my stomach. My throat tightened and I felt the heat in my temples as millions of brain cells processed the incomprehensible. Hubby has cancer. Rare. Incurable. Advanced. The oncologist gave us the verdict, and pronounced the sentence. His words gave an urgency and new meaning to everything.

Chemo has begun – and not without drama (to be shared in an upcoming post). He has been receiving thrice weekly dialysis for the acute renal failure triggered by the cancer. Hubby is a fighter and is treating this as he would as one of his trials. In his words, “This cancer is no different than cross-examining a hostile witness. Be aggressive, stay in control and cut them no slack until they are brought to their knees.” Those enemy cancer cells picked the wrong guy to mess with!

50 years ago, the friendliest boy in our senior class noticed a shy, bookish, insecure classmate. A friendship began, and three years later blossomed into a love affair. 44 years ago we exchanged the “for better or worse, in sickness and in health” vows - and have been blessed with a lifetime of “better” and “health”. We weren’t prepared for opposite ends of those vows, but it’s the hand we’ve been dealt. 

Until now, news of Hubby's diagnosis has been limited to family and extended family. It has taken time for us to adjust to the new normal. He had chosen to control the narrative, and still hopes not to  be defined by the diagnosis. But knowing that my therapy is writing, Hubby gave his blessing to sharing his journey from my perspective. Thank you, honey. We’re in this new chapter together and the love of my life – my Big Kahuna - remains #kahunastrong.