Cancer Isn't Peaches and Cream

Because yesterday's update is too long for a quick Facebook post, I decided to blog it for efficiency. For those who follow the blog and not Facebook, I'm sorry you lack context.

I just checked in with Dad's nurse by phone. He had a restful night. Since mom and dad are both still sleeping, I'll take a few minutes to update you about yesterday.

When Mom and I arrived in Dad's room at 7:30 yesterday morning it was obvious Dad needed to be here. His breathing had become laborious even at rest and despite being on oxygen. Internally, I started longing for his procedure to hurry and happen. It's miserable watching him work so hard to breathe!

Starting around 8:30 Dad had a ultrasound to check for clots in his legs. The scans were clear, a big relief. Immediately following the ultrasound, chest X-rays confirmed that the right lung would need to be drained first. The doctor doesn't do both sides at once because of the risk of puncture or collapse. Two liters of fluid were then drained from the outside lining of his lung. The fluid was sent to the lab for a work up. They follow-up X-ray showed that they did drain most of the fluid, but that there was some left to address through a diuretic. The left side, with approximately the same amount of fluid around it, would have to wait.

Dad's breathing, while better than previously that morning, never seemed to even reach the level of comfort he had the night before in the ER. I had assumed that a quick drain would at least return him to Monday's version of normal. I was admittedly disappointed.

By early afternoon there was a literal a line of caregivers waiting their turn to talk to us. Nurses, his assigned doctor, clergy, an entire palliative care team including doctors nurses and social workers, nutritionist, lab techs... Each with difficult questions and difficult answers. Meanwhile, Dad struggled to stay awake and give them what they needed. The lung pain and general ache, mixed with exhaustion and deep bone pain was relieved with IV meds, but that made him less able to engage with the medical care workers.

Advanced directive questions destroy Mom and overwhelm Dad. Doctors are frank: end game strategies need to be determined. The cancer is, once again, advancing. The fluid will continue to return as tumors fill in around his lungs. This is not Dad's last lung tap and relief could be hours, days or weeks with each procedure. Risk of collapse, puncture and infection continues to follow each tap.

In the late afternoon Mom stepped out to get some air and find something to wear to bed. We had not been at home when the doctor sent us to the hospital and she wasn't prepared for a week in Flagstaff. I decided to try to sleep a little in the chair by Dad, who was finally resting. Within minutes, I could tell my attempt to sleep was a waste of time. Dad had been coughing all day since the procedure. The re-expanding of his lung was causing a bit of a stir as mucus shifted. His breathing was crackly and starting to become laborious again. Within a half hour of sitting alone next to him I texted my siblings. He sounds like he's drowning. I hate this. He felt warm but complained of being too cold. I got a nurse to have her check into what I had started to worry about. He had developed a fever- 100 point something... I worried. She also seemed concerned and said she would call the doctor. When she returned she said the fever is low grade enough that it could be caused by excess inflammation as a result of all of the day's events. Okay. He was sleeping, so I'd relax and watch...

Dad woke up several times and said "Collene I need..." And then he'd drift back to sleep. Each time he woke up he seemed more confused. He insisted I "let" him get up and walk around, but he's too weak and I can't lift him alone. I got two nurses who decided to help him to the bathroom. He said he didn't have to go, but he had not provided urine at all for the whole day. They could kill two birds with one stone with his four step "walk" to the bathroom next to his bed. It's always a production to get Dad standing, this time was the hardest process yet. Three steps towards the bathroom and he turned into dead weight. He nearly passed out; he nearly vomited; he was drenched in sweat. "Don't make me get up again please", he begged. That's terrifying to me. He was insistent only minutes before that I "let" him. Has he forgotten? As soon as we settled him back into bed he started asking to get up again.

I cannot describe the helpless feeling those minutes held. I told him no, and he resumed sleeping and fitfully requesting a "need" that he couldn't remember. I wanted to call Mom, but she didn't need to see this and she did desperately need a break from this stress. I would handle this.

Around 5:00 p. m. the doctor stopped in to visit with Dad's roommate about going home. Mid-sentence, Dad started another terrifying bout of coughing. The doctor stopped his sentence and rushed over. "He's getting worse since I was in here two hours ago, right?"  Yes, definitely and now the fever... The doctor said "Okay, I'm coming". He hurriedly finished with the other patient and went to get nurses. It was determined that there is likely a pneumatic infection beginning, not from the procedure this soon, but likely an underlying bacterial infection that had now been given space to grow. Heavy duty antibiotics were ordered and Morphine was given. Another chest X-ray would help determine next steps... People swarmed in and out. Because it's concerning that he hadn't produced urine all day, a bladder scan was ordered. The palliative care doctor anchored herself at the foot of Dad's bed to observe and to make immediate decisions regarding symptoms and to ask history questions. His breathing had become torturous to watch and his delusional state was increasing. The fever worsened and we could not make him comfortable. That doctor stayed with me for more than an hour. She was describing ICU, intubation/breathing machines- asking would he want them to do that if all of that became necessary. These were Living Will questions Dad had not been able to answer two short hours prior, that we'd "have to talk more about". Mom returned in the middle of those questions, to a very different and more declined husband than she had left only 90 minutes before. This is impossible to describe for me. I couldn't "be there" for here. I was in the middle of swabbing his hot face with cold compresses and answering questions from the medical team and adjusting the large fan they placed in front of him to quickly cool his body. I tried to brief her on all that had happened, but I'm not sure I said the right things. I will never forget her face. She went to the chair across the room and curled up...

Finally the drugs did their work. Dad's body started to relax. The ICU option was taken off the table. A catheter was put in place as the scan had revealed that his body had been making urine, just not passing it. The new X-ray revealed fluid in the lungs now. The left lobe is still empty of fluid internally, but remains restricted by the external fluid buildup- with only about a fist size space for air. The right side is now grey with internal fluid. The draining of the left side wasn't taken off the orders for Wednesday, but the nurse did tell me decisions are very much fluid in this type of situation. We won't know until that moment they wheel him out, if he's going to have it done today or not. It is scheduled for 1:45 (West Coast time) today. They have also ordered an echocardiogram for this morning.

Dad was moved to a private room after yesterday's commotion. I know if he was up to it he would joke about what a guy has to do to get a little privacy around here... He's not up to it. They are keeping him well morphined, which works to relax his chest and open his airways as well as suppressing pain.

Yesterday was FULL of spiritual encouragers. One of the nurses, noticing my Christian Cycling sweatshirt, told me she loves Jesus too and quoted a bible verse that she said kept resounding in her head while we were talking. The hospital chaplain had a very encouraging conversation with Mom about remaining connected to the Lord in the desert times which leads us to Promise Land living. As you know, if you read my blog, I love references to The Exodus... Multiple visitors from Mom and Dad's church stopped by to love on them. Mom and I finished our day by the fireplace in our suite, crying and reminding each other that this is temporary, we are eternal.

Thank you for your messages and prayers. I love you each.

I took this photo of Dad about an hour before we checked in to the ER Monday.

Daddy

I didn't sleep much tonight. The word “heart” relentlessly permeated my wild and restless dreams. My husband needs sleep, so at 1:27 a.m. I got up and made coffee. The time change will make it 3:00 a.m. in 23 minutes and we have an early flight to catch, so I’m now up for the day.

They’ve been saying his heart is starting to fail. Maybe it’s the medications or possibly another tumor pressing on vital nerves. Maybe it’s whatever is causing all of his other muscles to atrophy. A visit with his oncologist on Monday may provide a solution, but it’s just as likely not to.

He was a disciplinarian. The kind of dad you’d fear coming home if you did Mom wrong during the day and she promised to tell him about it. He was organized and meticulously well kept, always clean shaven and polished. Whether it was his Naval career or his upbringing to credit, he had high expectations and little patience for foolishness or disrespect. He was seemingly immovable in his perspective and a lecture was ever-ready for the kid that needed to be taught. 

We worked hard for his approval in all things and he gave it; however, we were never overly lavished with his praise and his compliments were hard earned. I grew up feeling protected, but often wrestled with not feeling particularly cherished by him as I observed other little girls’ relationships with their fathers, or maybe that was just in the movies…

He always wore a cowboy hat. White is the color the good guys wear, he always told us. He was a Louis L’amore fan and an avid reader. As a family we watched every western and John Wayne movie ever made. Dad’s first pair of shoes as a toddler were cowboy boots and every pair since, excepting only his government issued footwear during his Navy time. Aside from his aftershave, my favorite fragrance lingering on Dad is forest fire smoke. From his college days all the way through last summer, my dad travelled the U.S. fighting the nations fires. Today, one of his deepest griefs is the loss of his strength and the hanging up of his fire pack.

Dad has always been an intensely productive man. He grew up in an era and in a culture that demanded he be outside working if the sun was up. He told me recently that he struggled with college, not because his studies were particularly difficult, but because he didn't feel right reading books or sitting around indoors while it was still daylight out. His own father had high expectations of him and required that he look for physically laborious projects around their farm to work on in the hours between sunrise and sunset; the work was never done.

As a married man with two, then three, then ten mouths to feed, my dad’s work ethic and desire to produce a quality lifestyle for us paid off. Integrity mattered throughout his career, so often he took the longer road just to ensure quality. Because of his provision, our mom was able to be home with us for most of our upbringing. She supplemented his income by baking pies for a local restaurant out of our kitchen and later, by driving our school bus route. Dad’s financial policy required that he never owe anyone money, including Visa. If he didn’t earn it, we did without. Although our second hand government green station wagon was embarrassing, he had paid cash for it as well as every other vehicle we ever owned. I honestly cannot tell you what I lacked, if anything, growing up.

Dad worked long, strenuous days. Many nights he came home to pray with us, kiss us, send us to bed, then eat his own dinner and return to the office. As we got older, our parents both made it a priority to be at our science fairs, band and choir concerts, drama meets, and sporting events. Dad even taught our hunter's safety class to remain involved in our activities. As a parent now myself, I am able to fully appreciate the exhausting work and schedule sacrifices they made for us. My parents both managed to make a few extra dollars by driving our activity buses for out of town events, a fact which initially embarrassed the middle-school me and very much blessed the high-school me.

Aside from fires, I cannot recall Dad ever working for pay on a Sunday. Every week, anyone who cared to notice, could expect to see him sitting, worn bible in hand, at the end of our pew at a non-denominational or inter-denominational church. While his arm was certainly long enough to reach the fidgeting far end of the pew, all it took was a look from Dad to straighten our fidget and silence our whispers. Dad has always taken his relationship with Jesus seriously, although during my 18 years at home I never remember hearing why or how he came to one. I never wondered, so I never asked. Dad’s approach to teaching us on spiritual topics generally were less relational in nature and more practical. It made sense to me that there were “rules” for my protection and his character was proof enough that running upstream in a counter-biblical culture was possible.

Weekends at our house were for cutting, splitting, hauling firewood, shoveling snow, mowing lawns, hauling trash to the landfill, paying bills, preparing taxes, cleaning and treating the leather on his boots, and going for drives around one of his beloved forests. In our younger years I vividly remember him setting aside weekend days for canoe trips, camping trips, horse pack trips, road trips, hunting trips, or simply trips to the cafe for a cup of coffee and slice of pie. These were the times I felt most connected to Dad. While at home he tended to be burdened, tired and stressed, away from home he was funny, relaxed, open and confident.  He told stories from his past, taught lessons on flora and fauna and tapped his fingers to any number of old country or marching band songs.

I have never heard a word of gossip cross my father’s lips. As an adult I have come to the harsh realization that not all adults are adult the way my father defined adulthood. I now am aware of multiple injustices and horribly stressful situations Dad was put in by other grown men professionally as well as personally. He endured criticism from “friends” and family regarding his family size and choices as well as for his staunch determination to live in every way with integrity. We never knew any of these situations as he was enduring them; dad always took the high road in front of us, his children.

As a young adult I counted on my father for advice regarding cars, finances, education, jobs and other practical decisions. It never occurred to me to rely on him for matters of relationship or emotional risk. After my separation from my husband of 14 years, I assumed I knew what Dad would think and say. I had watched my parents wrestle through tough times and come out stronger than ever as a couple. I knew his expectation that marriage is a vow and vows are non-negotiable, unbreakable. I knew that “God hates divorce” and so did Dad. I was certain I would lose my dad in some way because of the fact that I was losing my husband.

In the early spring of 2010 Dad asked for a breakfast meeting with me on one of my visits. I approached the cafe with defensiveness already welling up in me. I presumed I would have to hash it out with him and, as we were being seated, I was already mourning the double rejection of the men I loved. He hadn’t even spoken yet.

The waitress poured our coffee. This is a scene that has played out countless times in countless cafes. In fact, the morning of my wedding, Dad and I stole an hour from the early morning for one of these coffee dates. We also had dates on a morning before I left home, the week of my daughter’s birth, and a myriad of important and average days throughout my adolescence.

After the waitress left our table that morning I managed the courage to look into dad’s eyes. They were soft. In fact, for the second time in my life, I saw that they held tears. He started talking. He said that he had lost sleep wrestling over, around and through my situation. He told me of deeply invested prayers and emotions for me and of the seeking of wisdom on my behalf. He viewed me, my separation and impending divorce differently than I had assumed. I had never seen this dad. I had never seen this heart for me. With five words, “little girl, I support you”, our relationship was changed forever and the invisible boundaries between us were melted away.

It has been said that earthly fathers tend to represent our Heavenly Father, at least subconsciously. We tend to view God or our belief in the absence of God based on who our fathers were or were not. I don’t know and I can’t speak for everyone, but I can say that after self examination, this is true for me. In the weeks and months following that breakfast date, I discovered that I had come to expect God himself to be a little demanding, relationally distant, holding high expectations and conditional affection. I felt that same invisible boundary between me and God. Somehow that one cup of coffee and a single conversation began to alter my perspective on everything “Abba” for me…

The following six years have been transformational for me regarding spiritual things. By the time our family got the news of Dad’s Stage IV cancer three years ago, I had already grappled and grasped the truth that God is good and that I am accepted and deeply loved by Him.

I cannot fully explain the changes that I have witnessed in my father since that horror of a diagnosis day, October 31, 2012. Oh, his heart… He is gentle, open- wider than I have ever seen. He is humble, yet with more resilient strength. He is deeper. He is more intentionally articulate. He loves. He is patient. He is relaxed. He is funny, able to make light of his physical limitations. He is approachable, even to the messiest of emotionally outbursting daughters… Nearly every phone call winds down with the words “Collene, can I pray with you?” Nearly every text declares his love for me; nearly every response to my search for his advice is covered in scripture and the promises of God for me. Every time we see each other he reminds me that, at 38, I am still his “little girl”.

They say his heart is failing, but I disagree.

“My heart and flesh may fail, but God is the strength of my heart and my portion forever.”

Psalm 73:26