I couldn't fall back asleep. Slowly, I let the reality of the day ahead sink in. It was Friday, April 1st. Dad was tentatively scheduled for a third pneumothorax procedure, this one back on his right side. I assumed he would be dry-mouthed in "NPO" (no food or liquids of any kind) status. I texted Mom, knowing she would have just gotten to the hospital, to see how his night went. She replied that he was sleeping "peacefully(ish)" when she got there; she had only had a nightmare about his needing her cries. Good. I jumped in the shower and left the room with wet hair. I had been rotating my wardrobe though the three day's worth of clothes I had packed for my Easter visit to my sister in Washington. I had not even brought shampoo or enough toothpaste to camp out indefinitely in Flagstaff. I knew I drove by a Target every day on the way to the hospital, but taking the time to stop there seemed like such a waste of precious time with Dad. I had made time for doing my laundry the night before, so I was good for another three days for clean clothes...
In my blog-post from Thursday's events, I told you more about the relational parts of the day and less about the medical report. Because I want to remember everything and keep it clear, for me, I need to back track to March 31st for a second:
It truly was an emotional roller coaster of a day. Dad had his best energy day, despite a horrible night of pain the night before. He had waited too long to say "yes" to pain meds and spent several hours trying to get back on top of that. The antibiotics seemed to be helping with the chest infection pain. Bladder issues were a concern all day, but medications and nurse assists were able to keep the Foley away for another day. Early on Thursday, preliminary lab reports from the original Tuesday fluid drain found no cancer cells present. We were pre-warned that a "no cancer cells" report could just mean that probable cancer cells were difficult to spot in that amount of fluid (a gallon is a LOT to test for a few abnormal cells); a plan was made Thursday morning to keep Dad at FMC through the weekend to monitor his lungs and finish out his antibiotic regimen. Assuming all went according to the doctor's hopes, Dad would be then transferred to an inpatient physical therapy facility Monday morning for a week or two, to address his rapidly atrophying body. He had lost a lot of strength since Monday when he checked into the ER.
Now on Friday morning, with worry about a back-lash physically from the "up" day Dad had just had, I was heading directly to the hospital to see for myself how Dad did during the night. My brother Gary had arrived late on Thursday and would be meeting me up there as soon as he recovered some sleep after his road trip.
When I got to Dad's room on the 3rd floor of Humphries Tower South, I was surprised to find that Dad was eating. Dr. Lambert had gone off shift the day before and had turned him over to Dr. Fernandez for the duration of our planned stay. Dad had yet to meet him, and pneumothorax orders were still unscheduled in the nurse's orders. Dad had really worn himself out the day before with all of the excitement of people coming. Although he rarely got out of bed, even for a trip to the Men's Room, he couldn't keep himself awake much on Friday. As a result of the restless, painful night before, they had him on three different styles and delivery methods of pain control.
Dad knew he was struggling to stay awake, which bothered him in every way. He HATES how pain meds made him feel and begged not to let the doctors turn him into an "addict". Dad asked his mom not to leave him, just because he was sleeping. He wanted to opportunity to see and visit with her every time he woke up from his "little nap". She complied, staying in his room the entire day, watching him sleep. We all knew we needed to find a balance between being with him so he wasn't "alone" feeling, and not wearing him out by our presence; addressing our concerns with him did us no good. "No, I want you in here, you aren't causing any problems for me. I really don't need the sleep," He kept saying. Still, I felt worry about how the commotion of five, soon to be seven people, might make things worse for him.
Early in the day, while Mom was grabbing breakfast and before everyone else arrived to the room, I was able to have my Coffee with a Side of Morphine date with Dad. During our visit, Dad had more emotion. I knew on one level, the pain meds were facilitating the tears. I have been on some of the same meds, post-surgery, in the past and I know how emotional I've felt... Yet, I also knew that the emotions are legitimate. The meds help facilitate the expression of what we usually keep hidden from others for vulnerability's sake... I wrestle here with how much of those conversations to share publicly. It moves me deeply still to remember the choked up sound of my dad thanking me for loving him well in his last days. He shared similar sentiments about a few of my other siblings and my mom. He described who he had chosen to advocate for him financially and with his business stuff after his death, and why. He also expressed reasons for appointing people to care for our mother in specific ways, and why... It struck me just how RELATIONAL my dad had become. The practical and logical side of Dad was taking a side-kick position to the loving, relating, father in him. I knew that his choices weren't in lieu of any of us, but were strategically FOR each of the individuals he placed in those positions. He expressed grief and the years spent not listening to or maybe really hearing what each of us need in relationship. He described his methods of how he had tried to remedy those aspects of all of his relationships over the last few years. He was also grieved that there is only so much one person can do in relationship. There are always two participants in a healthy relationship...
I am so blessed to have been the receiver of my father's heart verbalized on this morning. I tried to record some of the conversations, but that didn't work out. I'm devastated NOT to have those words on recording... During our date, as I wiped tears off his cheeks, Dad said, "Collene, I know you have a lot going on in your life and that your being here is hard on Coul and the kids. I appreciate your family's sacrifice. I know it's not fair to ask, because I don't know if I have days, weeks or months to live, but I need you here now. Will you stay? I am so tired and I can't make decisions about what I need and I'm not willing to put more on your mother; she had done so much. Please don't leave me yet."
Uhhhhggggh.
I knew what my husband would say. He had already been telling me that even if it's months, if I felt like I needed to stay, he'd make it work at home. I also knew what the girls I work with would say. I knew that most of my clients would understand and find capable hands in the various chairs near mine. I really had no decision to make. Tuesday's return ticket would be ignored. Furthermore, because the day had started off with my mom's nightmare and now Dad was expressing an inability to advocate for himself, I would no longer even leave the hospital. I was determined to make sure Dad had round the clock advocacy that understood his needs and was capable of meeting them.
Because of Dad's fully involved skeletal cancer, he was always uncomfortable. His hips, femurs, tailbone, ribs and shoulders were the most devastated by tumors. Any struggle to breathe or attempt to cough, wore on these areas. I found that pulling his knees up towards his chest would relieve the femur pain, especially during his coughing fits. However sitting in that position put too much pressure on his pelvic area, so within 15 or 20 minutes I would have to straighten his legs back out. At times we put his feet up to help drain the edema back down towards his knees, but then his femurs would eventually wear out again. We would lower his shoulders and head into a lightly elevated position to allow his head to rest for him to sleep, but that would only last 30 minutes or so, before his lungs would fill up with mucus to cough out. I would then lift him to a sitting position, pull is knees towards his chest so he could cough and then repeat the rotation of positions. Because of the intense radiation to his pelvic area in late December and early January, Dad had sever radiation burns, which had turned into pressure sores due to bed time. Now he was hurting in absolutely every way. We alternated propping his left side, then his right, then leaving him center. His hips always bearing the brunt of his dead weight. Friday was the first day that Dad had obviously lost the strength to pull his own legs up or down, or to assist in the re-positioning in any way.
During one of our times alone the nurse came in to ask his pain level. Dad's answer was always "three". I do believe he said it was a four once, but quickly revised his assessment back to a three. When I nodded to the nurse that "three" meant it was time for more meds, he left to comply with my direction. Dad started to cry, "Collene, I am taking pain medicine every time they invite me to. I don't know that I hurt more now than I ever have at home, when I wouldn't take anything. Now I never tell them no and they won't deny me. What does that say about me?" He sounded desperate and genuinely disgusted with himself. Dad needed me to tell him, again, all of the reasons why it was okay not to hurt. He again begged me not to "max him out". He especially hated the idea of morphine, because he is a Vietnam era vet (without battle time) and he knew the tragedy of so many of his peers who got hooked. We explained why morphine was medically the best choice for him: it could be administered orally via a liquid- long after he removed an IV and went home, it wouldn't thin his blood like some of the others had, it had a long lasting version and a quick acting version that could be layered to not have highs and lows, and he was only on 5mg every two hours. As I understood it, the max for him would be 40mg in the same amount of time and it could still be layered with other options. I assured him that he would never be "maxed" but that I could not allow him to doubt his pain level anymore. This is one of the reasons he had asked me to take over decision-making.
My heart hurt for him. His character was being challenged in every way. He was submitting himself to humbly accept things he never would have found acceptable, such as a female assisting him in the bathroom, taking medication of any form, wearing a "gown", not having privacy to bathe alone, having his "little girl" feed him. These were all such degrading positions for my father to be in, yet he was soft in humility and refused to lash out at anyone. I came to love and appreciate him all the more for the man he had been, and the man he was becoming through this suffering. I would NOT let this man down.
As Friday wore on, it became clear that Dr. Fernandez wanted to give Dad's body a break; there would be no draining procedure on Friday. Another x-ray showed that the lungs had not filled more over the course of the day. He would be reassessed Saturday.
Friday afternoon, I returned to my hotel room to gather the things I would need for the night at the hospital. I updated the family on the day then returned to find that my Dad's only brother, my uncle Kevin and his wife Danita had arrived by car from Arkansas. They brought a notebook of photos and copies of drawing my dad had done as a kid. Grandma had put the book together for all of us to enjoy. I had seen many of the photos before, and had even seen some of my dad's artwork a few years ago, but I continue to be impressed at the things I didn't know about my own dad!
Thursday night after Grandma and Icephine arrived from Arkansas.
Dad and his only brother Kevin.
Even sleep always looked painful, but I love his hands here, this is a natural "dad nap".
He humored me posing with him. I never loved a posed picture, but it's the only way I can get in one.
My dad at 7 months old with his first pair of cowboy boots.
Mom and Dad enjoying one of Dad's last times out of bed.
On Friday Dad's pastor and friend Danny Allen came for one of several visits.
Dad's family (minus one sister) was able to be with him during his final days. This meant so much to him as well as to the rest of us.
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