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. 

Cancer, One. Chemo, Zero.

We’ve surpassed the two month mark since Hubby received The News. I shared our reaction in an earlier post. We have now settled into the new normal of appointments, dates with chemo infusion; the sad, occasional sequestration from snotty nosed grandkids; incessant hand sanitizing to ward off the winter cold/flu season; and good week/bad week scheduling of formerly routine activities.

https://www.brainyquote.com/

Last week was a reminder of the insidiousness and cruel uncertainty of a cancer battle. The call we had been anticipating from Hubby’s oncologist came late in the afternoon. After four rounds of chemo infusion, he dropped the bombshell. Hubby’s CT scan had delivered the heartbreaking news that his tumor had not responded to treatment. Talk about a punch to the gut. We had lived in our hope bubble, yet cancer was winning. NOOOOO!! This wasn’t going to be the tear-less day I had promised myself. Instead we shared a long, muted hug. Called the kids. Felt the weight of failure at killing the beast. Paula-anna reminded Hubby there were still options. A different chemo regimen. Possible clinical trials. “They didn’t tell us there’s nothing more they can do.” I tried to find a ray of positivity, but we felt the heaviness of the news – a cruel blow that left us numb once again.

The next morning brought with it grey skies and the first measureable rain in a long dry SoCal winter. As much as staying in bed on a cold cloudy day might have seemed appropriate, Hubby was up and out of the house by six, headed to court and a client whose case trumped his personal battle. I was up too, making calls to MD Anderson Cancer Center in Houston, where Hubby’s doctor hoped he might qualify for a clinical trial for his rare cancer. All the wheels were turning and by afternoon we thought we had a plan. Houston, we have a problem – and hope you have a solution. But wait, there’s more…

USC Norris Cancer Center

Twenty four hours after the bad news had dropped, an unexpected email arrived from Hubby’s oncologist. This time it took us to the top of Mount Hope! There were two new clinical trials for specific treatment of the rare genetic mutation that had likely triggered Hubby’s cancer. And both were just 50 miles away, at USC Norris Cancer Center in Los Angeles, where we had already met with their gastrointestinal oncology team. To quote Hubby’s UCLA oncologist, “This is great news!!!” Hope was alive. Spirits soared. Was this the miracle we had been praying for? We enjoyed a weekend in hope-topia, and awaited our Monday morning appointment at USC.

Today was that day. Hubby’s USC doctor methodically articulated the three options before us. The safest was a second, standard course of chemo that has been successful (for some) in stabilizing his form of cancer, inhibiting its growth. One of the clinical trials he was “invited” to would be a blind study, meaning he would possibly receive a placebo instead of actual treatment. Last was a dosing study of an untested drug, to see how much he could tolerate before side effects became too severe. We were handed two packets of detailed descriptions of both trials and the required consent forms. Our heads were spinning! Finally, we asked the doctor, “If he was your family member, what choice would you want him to make?” Without hesitation, she said the standard chemo course would be her recommendation – for now. So that was it. Hubby’s USC and UCLA doctors are in agreement (cross-town college rivalry aside!) and chemo will resume – with new drugs – tomorrow morning. Fight On! Eight Clap! Clinical trials are still an option if this regimen doesn’t produce results.

As we waited for the car, I hugged Hubby and tried to read his thoughts hidden behind the faraway gaze. “I love you,” I said for the millionth time in two months. His eyes welled up and voice cracked as he echoed his love back to me. “The hardest part about all this”, he said, “is knowing what I am putting you and the kids through.” We held our embrace, oblivious to everyone, digging deep to keep hope alive, and finding strength in our unwavering commitment to each other.  

Hubby and I with Charlie our goofy Golden, choosing HOPE!

Hubby took a fall in Round One, but he’s back on his feet. The battle continues, and my cancer warrior is armed and ready. He is still #kahunastrong.