Documentation of a Death Well Done- The Final Weekend

Friday turned into Saturday with my brother Gary and I catching each other up on our lives at Dad's bedside. He and I both felt strongly that Dad shouldn't spend another night alone and since we were enjoying our visit with each other by the time regular visiting hours were over, neither of us were planning to leave as Dad signed off for a night of painful sleep. It has been awhile since I spent the night in "sleepover" fashion and Gary and I got a little (or a lot) giggly around the small-numbered hours of the morning. It sure felt good to laugh. Neither of us slept a wink and neither of us cared much about the time. This was also the first night that the nurses trusted us alone with the coffee making supply cupboard in the Nurse's Station. What a treasure my brother is; what a treasure this time with our father was.

During some of the quieter moments of our first overnight with Dad, Gary and I took turns searching, downloading and playing many of his favorite Country, Gospel and Classical songs. The first one I played for him was Mitch Miller's 'The Yellow Rose of Texas'. He was drifting in and out of awareness that night, but when this song came on he grinned in his sleep and lightly started tapping his leg with his left hand to the beat. 

When my Dad's sister, Charlene, called Saturday morning, she had only two questions: "What kind of frosting and does he want sprinkles?" I relayed these to Dad. She had been determined to have a donut, a cake donut, with her brother one last time. The day before, much conversation had gone into donuts and whether or not the kinds that are not "cake" are actually real donuts... Dad couldn't make up his mind. He hadn't had sugar of any kind in three and a half years. He told her, pink frosting with sprinkles. Just before she hung up, he added: "And chocolate with chocolate frosting. Or, you just decide for me". She decided; he'd get both. We all giggled and grinned while we watched him hammer through one and a half donuts before he gave up to take a nap-break. I wrapped up his leftovers for tomorrow.

Not long after the Saturday work-day started at home, I got a text from one of the precious women from my salon. She was needing a people-count so they could send lunch to us at the hospital. What a gift! A variety of sandwiches, beverages, cookies and chips arrived just before noon. This is what my dad looked like when the delivery guy arrived:

He had a vacationing look (if you can overlook the pain on his brows). It's one of my favorite pictures, ever, of him. I can remember so many weekend afternoons over my lifetime when an exhausted or worried dad would grab a nap on the couch or the floor exactly in this position. This photo is my current wallpaper picture on my phone screen.

This was the most thoughtful gift! My salon family is like real family in so many ways. I know they are each going through their own things right now and the seven of us could not have been more blessed by their thoughtfulness.

Dad spent a good share of Saturday fitfully napping again. While he slept I was struck by the little things about him, like the way his hands fell. Throughout my life, he often would interlace his fingers to think, or to look like he was deep in thought while he caught a quick nap. I'm thankful I have these pictures. Two things struck my about the pictures I took of his hands on these days. 

First, his wedding ring was too big. For my entire life it was a well known fact that Dad was unable to remove his wedding ring. Mom had pushed it on his finger on their wedding day, and it wouldn't budge from there. As a kid, I can remember feeling a little stress about that. What if it had to be cut off someday because his finger broke, or something... Now, on these days at the end of their 'till death do us part', I was stressed because it looked like it would so easily slip off his knuckle and be lost forever. I am proud of my parents' commitment to each other. In June they would have celebrated their 45th wedding anniversary.

Then second thing I am struck by when I look at these pictures from this particular weekend is his  gold watch with the blue face. It would become such an important-to-me part of his story in his final days. At the time I was taking these pictures I couldn't have known what lie ahead concerning it, but at the time it meant a lot to capture it on his wrist. My dad would never leave the house, or even his bedroom, without his watch on. I think he only owned a half a dozen of them his whole life. He was always having things like his watch, boots and hat repaired, rather than buying something new every time something wore out. I have that watch now, and it means so much for me to have these pictures of it on the arm of its rightful owner. I will say, the date never displayed properly during these last days. It was stuck in March still when he passed away, but the day of the week was correct...

Mom spent a considerable amount of the weekend, as she had the last several months and years, praying at his side. She believed (and still does) in the power of God for healing. Until Dad's final breath, she would ask for it to be accomplished this side of heaven for her husband.

Saturday turned into Sunday in much the same way the weekend had dawned twenty-four hours earlier, with Gary and I committed to spending the night on watch in Dad's room. However, just minutes before midnight, we were joined by our brother Daniel. Dan had caught a late flight and was planning to spend three days in Flagstaff before returning to the East Coast for work. Dad was able to be awake and alert for an hour or so while Daniel wound down from the day's traveling. It was always incredible to be in the room when another of my siblings would arrive. Dad loved each of us in such a special and unique way. He had spent several minutes expressing to me how proud he was of Daniel a few mornings before. I sure wish we had been able to capture his sentiments on video for each of his children...

After Daniel and Mom headed to the hotel for sleep, Gary and I settled in for the night. Neither of us are young enough for two nights in a row of giggling, so after several hours of conversation over Dad's sleeping body, we decided we would take turns in between medication doses, repositioning Dad's legs, and vital-sign readings, in the "comfortable" chair (it wasn't) trying to sleep ourselves. Neither of us got much rest, but we did spend some valuable time together in silence, processing what we were seeing and what we would need to do in the very near future. Gary had taken a leadership role in the "business" side of things for Dad and he was actively helping me decide things on a medical level as Dad continued to deteriorate. Dad had a very painful night in general and it became necessary for the two of us to work together to monitor where we were in terms of layering his different pain meds as the night wore on. There was no official, doctor-ordered, pain-med delivery schedule so Gary and I worked out our own schedule of sorts by keeping track of what we had been doing most of the day, into the night. Late in the afternoon on Saturday we had been advised that the Palliative Care Team, along with the hospitalist, Dr. Fernandez, wanted to meet with Dad and his family on Sunday morning. Gary and I had a host of questions and suggestions to ask about to make him more comfortable. 

During one of Dad's trips to the bathroom early Sunday morning, which he was adamant that his children not be present for, Gary and I had a frank discussion in the waiting room. I asked him, "Gary, am I going crazy? No one else seems to want to admit out loud that Dad is changing. Is he declining or am I tired and being overly dramatic? I feel like I might be going crazy." Gary responded with affirmation of what I thought I knew: "Oh, he's definitely declining Collene. I've only been here a couple of days and he's totally changed from when I got here. I have no question that he's not going to be getting better from here on." Somehow it was comforting to hear him say those horrible words. I felt like I wasn't alone. I didn't want to live in denial, or to be a drama queen. We sat in that waiting room longer than necessary because we both needed a good cry. 

It was SO STRESSFUL to watch our manly father turn into a helpless child in so many ways. What made it worse still was the knowledge that he was mentally aware of his decline and physical neediness. How humiliating for him that his female nurses had to help him to the bathroom. He had asked for a male nurse at one point, because they tend to be stronger and sturdier he thought. He didn't want to take out a tiny little woman on his way down, if he fell. Unfortunately, his male night nurse was burly enough, but not overly gentle. I heard Dad's ribs pop and crack as his nurse helped him to the bathroom at one point in the wee hours of Sunday. I'll never know if something in there broke, but I did hear my dad cry out in pain, which wrecked my heart.

Sunday, as the sun came up, Gary decided to grab the free breakfast at the hotel and get a few hours of sleep in a real bed. I didn't plan to leave the hospital, even for a shower, until after the family meeting with doctors and palliative care team sometime in the late morning. As Dad was waking up for the day, I told him I was going to get a cup of fresh coffee and asked if he needed anything. He laid back his he'd and grinned mischievously at me. He didn't say a word, but held up two fingers. "Two? Dad are you asking for a coffee too?" I asked and he nodded. Oh, my sweet daddy. He hadn't had coffee in the three and a half years either. Our dates since his diagnosis day had lacked the aroma of a real daddy-daughter date. I knew he was more fragile this morning than ever, so I poured him a less-than-full cup. Then I unwrapped the left over partial donut from Charlene the morning before. We did a little talking, but mostly we just sat and thought and smiled at each other. Dad only drank about three sips of his coffee and had two bites of donut before he was too weak to hold himself up anymore. I put my cup down and repositioned his body in the now-routine next position. He closed his eyes and smiled. He was aware that he would need to be "aware" at the meeting in a few hours, but he was looking forward to seeing his mother and siblings, Mom and Daniel. He'd catch a quick cat-nap before everyone started arriving. 

The Palliative Care Team assembled in Dad's room around 10:00 on Sunday the 3rd of April. What they had to say was really no surprise to Gary or I, since we had seen him deteriorate before our eyes over-night. The area around Dad's lungs were filling up so rapidly at this point, there was no doubt, even without the lab confirmation, the cancer had metastasized to his outer lung tissue. It was determined that a permanent drain would be installed in Dad's side in order to drain fluid at home, or wherever he was sent next. The team decided that the early morning trip to the bathroom in which his ribs had popped and cracked, would be his last trip from his bed for that and warned us that he may never leave his bed again. It had become to dangerous and exhausting, even with multiple nurses assisting him. A Foley would be the only option from now on for draining his bladder. The good news about that was that they would no longer need to harass Dad every time he attempted to alleviate his bladder with the scans and measurements and the mess of medications to help make things process correctly...

We discussed, at length, pain management strategies. The plan that Gary and I had developed overnight was fine for in the hospital, but there were better options to keep him from "crashing" so much in between doses. Additionally, IV drugs weren't going to be an option once he was discharged. The doctor was no longer making a Monday discharge seem like an option, especially with a surgical procedure on the menu, as well as testing to be done of other pain management options.

The palliative care nurse was so gentle and direct when she said it. Her eyes met mine briefly, then found Dad's, Mom's, Gary's, Grandma's... "You should expect from here that there are days or weeks, but not months left." She had a charming accent and her voice was so musical, although she wasn't singsongy or flippant when she said it, it hardly seemed like bad news. She didn't flinch or recoil from finding eye contact with each of us in the silence left by her words. Instead, she seemed to urge an emotion from me as she found my eyes again. I tried to ask a question, that I can't remember anymore. I just know that the question didn't really need an answer and my voice cracked with tears. I stopped mid-sentence to sob and then tried again. Whatever it was that I asked, she answered and continued sweeping the room looking for eyes with her own heart holding each of us in her eyes. My dad then put out his feeble hand to shake hers. "Thank you Vanessa," he said. He then reached out for a hand-shake from each of the team members in the room. He thanked each person by name and sounded cheerful, not somber, doing it. It's hard to be down, when he was so ALIVE in his attitude. No wonder it was so confusing to assess him...

The remainder of the day was full of sleep for Dad. The pain med changes were immediate following the one hour meeting at 10:00 that morning. He was absolutely wiped out from forcing himself awake for a full hour anyway, but the layering effect of the new meds facilitated some very comfortable rest for him. We had tried to follow up with him about some of the PC Team's questions for us. Where would he like to go after being discharged? The only type of facility Dad would qualify for now would be a hospice facility. The other option would be home hospice care, although it was a big question as to how much and for how many hours/days they would be available on the mountain where Mom and Dad live. 24 hour care did not seem to be feasible at their home, at least not with a professional. Dad had tried to articulate that he felt a hospice center would be preferable to him, but then he seemed confused when Mom questioned whether or not he just wanted to go home. We weren't getting anywhere, and it seemed unlikely that Dad would be in any better position to make that decision on Monday. For now, he obviously just needed sleep.

At one point in the late afternoon Dad woke up enough to hear that I had a message to pass on to him from his sister Gail, who was unable to come to Flagstaff from Arkansas. She had suggested I read some of Louie L'Amore's novels in excerpt form to him, if he was up for it. He nodded when I suggested it to him, and said "I've been thinking I'd like to be a ghost writer of a story later tonight." He then drifted back to sleep. We all laughed and later teased him about ghost writing a story.

It was a few days later that Gail told me that Dad was actually referring to "Ghost Rider", the show and theme song. It was something they had enjoyed together in their childhood and he was making a little inside joke for her. Dad knew what he meant, we didn't and we had assumed he was just on some very good drugs... As I look back on those moments of "confusion" (in our minds) I am thankful to have learned the truth about what Dad was actually referring to, in almost every case. He made total sense, but only to those who had shared those experiences with him. He never really "lost his mind" as some would assume, but rather he was  trying to let us all in on his life-story-processing prior to his death. Such a gift those hours and days were.

The Grief Season

Seasonal Allergy is the URL name of my silly little blog for a reason. I hate the constantly changing seasons of life. In fact, ever since the day I became a mom, I have been aware of the internal sound of "whizzing" as the calendar sheds it's pages. With each calendar season changing and a billion pictures that prove that another year has altered my baby, turned toddler, turned awkward-toothed pre-teen, turned young adult, turned MAN, I have always deeply craved a circling of my wagons and had the desire to hold everyone I love close. I neeeeeeeed things to stop, to BE STILL.

My personality works against me on this in some ways and facilitates the whizzing by in other ways. Because I am highly relational, I tend to hang on too tightly to people and special moments, but I'm also a mover and a doer that wants to see and experience the world. I've spent my adult life trying to reconcile those to attributes. I am still an infant at "stilling" my heart and mind while the "whizzing" changes my every day reality.

Today I took the day off from the salon. Internally I feel the practical pull to use my one day alone wisely. I KNOW (yes kids, yes Honey, I see it all) I should be re-filling the refrigerator and the snack cupboards, processing mountains of laundry, dusting, mopping, sorting stacks of mail, doing the bathroom mucking... or at the very least, teaching someone else around here how to do those things correctly- to avoid my having to re-do them later. I've been gone from this house for too many days and we've all seemed to slip into a "camping out" mode. Internally I also feel the emotional reality that I have absolutely nothing to offer. I don't believe I can muster the emotional energy it would take to get out of my car in the rain, wander through the aisles and make choices, then to stand in line at the grocery store, Costco, or heaven-forbid, Walmart. Sadly, I'm out of milk, eggs, bread, all meats for lunches and dinners, vegetables, contact solution, cotton balls and my toothbrush is in poor shape- those are just the things I can think of off the top of my head. I haven't polled the rest of the family, it's absolutely possible that they've completely given up on brushing their teeth and washing their faces, and I. DON'T. CARE.

So this morning the dog and I are sitting together in the still-dark living room, avoiding making the rest of the shopping and to-do lists. While Moses sleeps next to me, I'm envious of his cozy rest. How am I going to purge a grief that I can't even really feel? I am aware of Grief's presence- it has put nearly tangible weights on my heart, my mind and even my body, yet I am numb to its pain.

I am irritable. I want everyone home and near me, but I don't want to hear a single sound. I want to hear about their day- their perspectives, but I cannot concentrate on their words or needs. I want my hand held, but I feel suffocated by being touched by anyone and everyone. I want my children, their smiles and joy, but I'm annoyed that they aren't aware of my numbness and desperate emotional depletion. I want to talk about him, but I'm tired of the sound of my own voice. I want to remember him, and the final 6 important days I have yet to blog about, but I cannot force my mind to think on it anymore. I want life to carry on, but I cannot stand that life has moved on. I want to discuss all of the things like bike racing and politics and summer plans that my husband has been contemplating for weeks, but I hate trivial conversations and cannot even handle overhearing the bickering at the sink as the kids load the dishes, much less the bickering of politicians and canned antagonism on the stupid TV. I want to be a friend, but I wrestle with simply not caring. I don't like this version of me. I assume I'm not always going to be this way, but then I also know that I was changed forever in April 2016.

I'm pretty sure my life today, on the outside, looks pretty normal. I look like I'm coping well and that we are all back in our routine of work and home and kids' activities. I shower and dress well, I put on my make-up and pick out a smile and an attitude suitable for each and every day. Except, I want to scream and cry and rage, but can't find the energy or that particular voice.

I envy my mother's tears. My sister's sobs look almost cozy, I've reviewed those pictures a time or two since a week ago Saturday...

I am numb.

I am exhausted.

I am alone, yet I am surrounded. I'm starting to understand what little I know now about the grieving rituals of the Old Testament. Smart people, they were, I think...

I can imagine a good "aloneness":

In my daydream I see me sitting on a beach. Waves of grief are rhythmically washing over me. There is a pattern to them; each make sense and soothe even while the salt and sand hurt my open wound. I crave those waves and the stillness in between them. I crave the expectation and the ability to make room emotionally for the power of the next one as I anticipate it washing over me. There is a cleansing in the power of those waves that my imagination tells me I need...

My emotional reality is a different kind of "aloneness":

What I'm experiencing is more like a bustling sidewalk. There are low, strong tsunami waves washing in from every direction, clipping me at my ankles as I hurry along. There's no predicting the next one, no anticipation and no routine to any of them. There's no time for embracing them in any kind of productive or useful way, they are simply another annoyance for me to cope with and behave myself through. My feet are wet and cold; I'm slipping and slopping and keep stumbling along, still hurrying. Maybe I'm getting somewhere, but the ankle deep water doesn't let me measure distance. I don't have time to fall, so I keep myself righted and try to keep "it" all together. There's no rhyme or reason to any of the madness; nothing feels productive, not the grief, not the busyness, not the water swishing through the streets of my imagination. I keep seeing mud and debris being brought in by the surges, but nothing is being removed or resolved by these ridiculous waves of grief.

"Make sure you take care of yourself."

It's the advice I keep hearing over and over. Although I've said it a bazillion times to other people, I can't help but wonder: What the heck does that even mean? How is that supposed to that look for a person in my situation? I'd love to check out for a week, or two, or fifteen... But that doesn't do anything except prolong my responsibility and ruin my relationships and destroy my business and obliterate my finances and abandon my children in their needs. None of those options are fulfilling the advice to "take care of me", really. So, in this season of grief, mixed with the season of motherhood, and the season of great responsibility to my family and career... how do I find that emotional beach, and how long is sufficient for me to sit there if I ever to find it, and how do I express my beach-needs to the people who don't understand that I haven't really "moved on" to anywhere and I'm not now, nor will I ever be, "over it"...?

Documentation of a Death Well Done- Friday

I awoke with a start. Mom had flown into a sitting position in the bed next to mine with a gasp. "He needs me, " she cried as she jumped out of bed. Was it a dream? I asked her, but her hurried dressing and rush out the door left no time for an answer. I worried. Had she sensed something extra, or did she just have  a cruel dream about the usual pain he felt during the night? She was dressed and out the door before I even had time to offer to go with her or to know what day it was.

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. 

Documentation of a Death Well Done- Thursday

I didn't sleep well after my late night calls on Wednesday. Mom was gone and I had spent hours the night before, into the early morning, discussing hard topics with my siblings. My rest was fitful at best. It was around 6:00 a.m. on March 31st when I left for the hospital. I now had a "mission" to complete for Dad to put his mind at ease. He needed a solid burial plan and someone with the emotional energy to complete it. I knew he would be interested in my conversations the night before.

Prior to this morning I had been unwilling to pull out my Nikon. As you've seen, I did use my phone to sneak a few pictures here and there, but the snapping sound a "real" camera makes can be intrusive. I also had mixed emotions about capturing what I was seeing. Dad was clearly losing the appearance of the father I had always known a little every day. I want to remember him the way he always was, but I didn't want to miss a moment of his life. I took a few pictures of him after I arrived that morning. He was sleeping solidly, lightly snoring to prove it. I put my camera away and waited.

 The sleepy-head I found early on Thursday morning, the last day of March 2016

 Dad's ring has not been off his finger since he moment Mom put it there. It hasn't had room to move from his finger for that matter. Lately his weight-loss has made ring-removal a possibility for the first time in the last 45 years.

When he woke up I asked him if he would mind me taking pictures throughout his time in the hospital. He said "go ahead" and gave me a little grin. He was always so patient with me when it came to my love of things the camera could capture. Two years ago I had come to feed his scrawny body for a week. When he picked me up in Phoenix I showed him a few of the macro shots of flowers and bugs I had been editing. He spent the next several hours pulling over for every flowering weed and blooming cactus between Phoenix and Blue Ridge. The trip took no less than four hours...

 Dad is always so patient with my camera...

After our little impromptu photo shoot, while we waited for Dad's breakfast, I told him about the conversations I had with nearly all seven of my siblings regarding is very near future. Everyone had resounded the sentiment that "Dad should have what Dad wants" at the end of his life and beyond. No one would be offended if he chose to be buried in a location that meant little to nothing to them. Because Dad had decided on Montana as "home", there were options. He had started his adventure in Montana in Libby with Mom. They started having children in the Trego/Eureka/Fortine area. Half of us were born in the Kalispell hospital. The other half of us were born during our family's time in Wisdom and Gardiner (Missoula and Livingston hospitals being represented accordingly). All of those locations held meaning for Dad, but he had owned property the Fortine area until last summer and had always hoped to retire there. Although many of my siblings had spent little or no time Northwestern Montana, everyone was willing to do what it would take to make it happen for him to be buried there.

As we talked, Dad could not stop the tears from rolling out the corner of his eyes. He had been so worried about causing problems for any of us prior to, or after, his death. He expressed relief in being able to discuss the "hard things" with someone. He had felt alone in his thoughts of death and burial. He assumed that to plan for it outwardly with his wife could communicate a "quitting" mentality to Mom and he hated the thought of dashing her hopes of healing and survival. Mom had been his biggest cheerleader and life-affirmer for three and a half years... He made sure to tell me that I needed to remind Mom that "(he isn't) ever quitting, (he) just doesn't know how much energy he has to keep trying for enough strength." I told him she, we, he would be okay. From that point we discussed Mom and our understandings of her future needs. Dad and I were certainly on the same page and all I could do was assure him that she would be okay; I would make sure of it. It was understood that Mom would not have to make a phone call or search for a dollar bill to cover the cost of what comes next...

Mid-day on Thursday my dad's mother and youngest sister arrived in Flagstaff. My grandmother has not often flown in her lifetime and the trip was taken into serious consideration; she needed to see her son. It was hurting her heart to know he was in pain and she needed to be near him. It wasn't easy to ascend to nearly 7,000 feet above sea level for either of them, but Dad was beside himself with excitement. If fact, Thursday was Dad's best day in every way. He was energetic and excited to see them. He had great color and clarity in thinking. There was an air of "going home soon" and his attitude was infectious. Early in the day, Dad's doctor was hopeful as well, as he had not heard anything from the lab reports to the contrary, that the pneumonia had probably caused the fluid buildup and that he'd be good as new by Monday. Further excitement was added to the schedule when it was announced that Kevin, my Dad's brother, and his wife, Danita, would be arriving sometime on Friday...

Although later afternoon x-ray results indicated that more fluid would have to be drained from Dad's right lung the following day, we were in a "wait and see" hold...

Mom returned to Flagstaff in the early afternoon and was ready to turn in to our new "home away from the hospital" around 8:30 pm. We all needed SLEEP and Dad was especially ready for peace and quiet!

 My grandmother, Icephine Sears

 My aunt Charlene Sears

 Dad was in so much PAIN, but adjusting his legs seemed to offer relief. Having his momma there was equally helpful. This was his best day...

Documentation of a Death Well Done- Wednesday

As promised, Meghan had called me in the middle of the night with the updated time for Dad's second pneumothorax procedure. It wouldn't be until late morning and Mom was still sleeping when I woke up just after 6:00 a.m. I was confused as to where I was, a sign I had sleep hard for a few hours.  It would be the last good sleep I would experience for the remainder of my father's life. My husband would be heading to work, so I called to visit for a minute. He tried to encourage me to continue sleeping, but I couldn't make it happen. There were so many thoughts and worries. I made coffee and sat by the fire. This really was a peaceful suite. I felt the presence of Peace, despite the dampness and chill that was still in the air.

I sipped coffee and stared at the flames. My life was being altered and I knew it. What about my kids? How would this affect them? Some of them had experience after experience for a decade and a half with their Grandpa. Some of them, had barely started to trust and love and need him. Another has no frame of reference or relationship. He loves her nonetheless and all of them equally... My heart aches for all six.

I thought about my siblings. A few of them had asked that I make sure to let them know if I thought it was time to say the final "goodbye". I was confused and took the responsibility very seriously. Yesterday afternoon I was sure it was his final day. By evening, I was doubting again. He had a history of pendulum swings and I knew better days ahead were part of the pattern of his disease...

Mom woke up and was in the car before I could even finish my cup of coffee. She was ready to see her man! We checked out and drove the ten minutes to Flagstaff Medical Center. March 30th was starting off well for Dad. He had better color and had rested fairly well, although his IV had been placed inside his elbow and every time he curled up to get comfortable he set off alarms. First order of the day nurse would be to change the location of his IV.

NPO was the status posted outside his room again. No fluids, including water, and no food. Unfortunately for Dad, he actually had an appetite this morning. Again the green sponge-on-a-stick would be his only relief. He was fairly accepting of his new form of hydration by the time they took him for his second pneumothorax.

This time his transport person was a man named Kionoa. He was a large, muscular young man from Hawaii. Dad connected to his smile and gentle manner immediately. They spent the ride down to Radiology discussing the Big Island and Sears (the store, which is not us) and families... Dad's bed had a locking mechanism failure, which made him fun and challenging to transport. Kio made it fun, but was so incredibly gentle on the bumpy floor transitions and in and out of elevators. Kio would become Dad's favorite transporter and all of us would chat with him when we saw him around the hospital. We found that we truly were developing relationships with these staff members, which helped make the days bearable.

Yolanda assisted the radiologist on call again. This time two liters of fluid were drained off Dad's left lung. The procedure and tubing itself was just as painless to install and complete, but Dad was more tired and less able to hold himself in the correct position. He was visibly weaker after procedure number two. It sure sucks to see him so weak and hurting so much. Yolanda's ultrasound revealed that the right side had maintained fluid levels near what they had been, so the doctor would ultimately put off draining it for at least another day.

Back in his room, Dad had lunch and a nap. I grabbed a few minutes in the FMC cafeteria. I had watched the guy at the grill now for two days. His name was Joe and he knew everyone. Not only did he know everyone, he knew everyone's order. By the time I got to the front of the line to place my order, I had decided that Joe is who makes this hospital really run. Every doctor, nurse and tech is quickly served and with a friendly greeting. It had become obvious that the hospital from the leadership, down, was intent on being a morale boost. It showed in every aspect of care for my dad. On my way back up to Dad's wing, I ran into Dr. Lambret. He caught my eye and stopped his rushing. "Are you okay today," he asked. "I saw your Dad earlier today and I am watching for his results from the lab." I was surprised that he recognized me. He went on to explain that he was hopeful that the pneumonia was the result of the fluid buildup, not cancer cells, but he was waiting on confirmation. The "holding steady" of the right side was hopeful to him. I thanked him for his attentiveness and went in to Dad.

All of Wednesday was less traumatic than Tuesday, but not nearly as "peppy" as Monday had been. I recognized this as the pendulum swing. The only thing left to do was wait. We needed lab-work and definitive answers on cancer cell findings. The pneumonia protocol required Dad be hospitalized through at least Friday. We wouldn't have lab results from fluid draw number one until Monday. The doctor ordered and echocardiogram to check heart function. That much fluid could be the result of heart failure and preliminary blood work had suggested it. Dad passed, his heart was fine. The hospital massage therapist visited Dad for a 20 minute massage of his shoulders and feet. She was wishing she had more time. He was in such pain. While he had no verbal complaints, his body wasn't willing to lie to her. She promised to try to return before the weekend.

As the afternoon progressed, Dad's naps were bookended with visits from a couple of former colleagues. There was a Forest Service friend as well as a Fish and Wildlife friend. Both had heard via email that Dad was in Flagstaff. It was nice to hear stories of my dad that they had to tell, but I couldn't help noticing that they felt like real goodbyes. I couldn't shake the feeling that this might be it. Dad's brother and a sister had called. Did I think they should try to come now? I had started telling my siblings the same thing I told them: "If you're feeling like it, you should. I don't think you'll regret being here, but you might regret not being here."

I was still so unsure. The weight of communication was impressive. What if I mess up. What if a brother loses his job as a result of my advice? What if another loses an entire semester of college? What about the cost of plane tickets; would it be six months too soon to cry "wolf"? I just couldn't read the situation and the hope from the doctor earlier that day had made me question my own fears and emotions.

That afternoon one of Mom's neighbors had visited. It was decided that she would give Mom a ride the 70-something miles back to their home that evening, to take care of obligations on Thursday as well as to pack a few overnight things. Mom wanted Dad's actual shaving kit and we had purchased groceries that Mother Nature had kept cool with snow in the trunk for the last two day. Still, they needed tending. Mom's car was left for me and Mom headed to Blue Ridge.

After Mom left, Dad and I spent about an hour or so discussing some of his end-of-life options. He told me that I didn't need to worry, he had worked out an Advanced Directive with the doctor before we arrived that morning. He wanted to make sure to protect Mom and I from having to make that call. He didn't ever tell me what he had decided, specifically, and I didn't ask.

I did ask about awkward things such as: "Have you thought about where you want to take your last breath?" and "We briefly talked about where you want to be buried before, but Mom was unsure have you two made a decision?" He seemed weighted by the questions. We discussed what he would do if it was just him that he had to consider, and we talked about his feelings of responsibility to "lead his family well, even after his death". He didn't want Mom to make those decisions, but she was emotionally unable to weigh in, and they impacted her too. He felt a little stuck. He also recognized that those choices had impact on me and my siblings. He was extremely worried about finishing well, relationally. "I just don't know how to bring these things up with everyone Collene, and I'm not sure I have the energy to do it anymore..." He sounded defeated. Tears leaked out of the corners of his eyes. He obviously DEEPLY cared for each of us and he was feeling like a failure in this moment. I asked if he would be okay with me making a few calls and gathering some intel for him to make a decision. He asked, "Would you be willing? I think I need you to; it's just so hard to do."

I resolved to do whatever it took to make sure he died in peace, whether I had days or months, I'd do what needed to be done. That night, I found yet a third hotel in Flagstaff. This one, while not fancy or particularly comfortable, would end up being our "home away from the hospital" for the remainder of the time in Flagstaff and they did give us a reduced "hospital rate". I settled into bed, but I didn't sleep. I spent time into the wee hours of the morning calling siblings, relaying the message, and getting feedback. I'd be armed with intel next time I saw Dad and a plan would be set in motion before Mom returned from Blue Ridge.

Thursday would be a big day for Dad. His 87 year old mother would be flying in (for the second time in history) with his youngest sister. I slept, restlessly and for only about three hours, but it was enough to fuel the day. I had stuff to do...

Waiting on his second pneumothorax.

Documentation of a Death Well Done- Tuesday

I tried a few times over the last few days to continue the story. Exhaustion, lack of wifi, needy children and just plain numbness has kept me from writing. I arrived home last night and spent the cold and rainy day today in negotiations with clients over my schedule, banks over funds, and negotiating bill payments over the phone. It turns out, life went on for everyone else. Crawling in a hole will have to wait...

When Mom and I arrived at Dad's shared room before 7:00 a.m. on Tuesday, March 29th, he was already awake and reading. He admitted he had read and re-read the same paragraph several times and still couldn't tell us what it said. He wasn't making headway in his novel and welcomed our company. The night had been full of nurse interruptions, as well as interruptions because of the nature of having a roommate and him being on the bathroom side of the room. Making things less comfortable for him was the fact that Dad's was "NPO" that morning, which means he wasn't allowed any liquids or food, including water. His pneumothorax procedure was scheduled for 11:45 and his lips and tongue were already dried out. I found one of his little green sponge-on-a-stick thingies, omitted the lime flavoring, and offered his mouth a little sponge bath. He wasn't impressed, but it admittedly was relief. I also stole Mom's lip balm out of her purse and worked over his drying out lips.

After sitting with Dad for only a few minutes, it became obvious to us that his breathing had become more labored overnight, despite the cannula offering him sips of oxygen with each breath. While a few short hours before he would lose his breath by putting out slight physical effort, he was now working even harder just to lay still and carry on light conversation. I found myself yearning for the lung draining procedure to hurry up and offer him relief.

At 9:30 a.m. a transport team came to take Dad to Ultrasound. The updated look at his lungs would determine which lung was under the most duress. The right lung proved to be the most dire in need. Because of the risk of puncture or collapse, the doctor wanted to wait and see how the right side recovered before attempting the left. If Dad was nervous, he didn't volunteer it. I did get him to admit he was looking forward to being back in his room, breathing better.

The procedure was performed about two hours earlier than they had scheduled him for it. I could not have been more relieved for him. Dad had started making it a point to discover and use the first name of everyone who touched him. I finally caught on to his commitment to this practice and did my best to help him keep track. Yolanda was the tech responsible for the ultrasounds that determine needle placement prior to each pneumothorax procedure. She would be present all three times, but I'll get to those other two stories later. On this day I appreciated her diligence in the comfort of my dad as well as her patience with my Mom and I as we wedged ourselves in her tiny room. Dad was able to sit, with minimal help getting up to a sitting position, for the procedure. Dad's body experienced nausea, dizziness and near blacking out along with weakness, but he was not complaining, just updating us as to what he was experiencing. He made sure to let Yolanda know that they did a relatively painless approach into his lung cavity, and thanked her for it. A total of 2 liters were drained off his right lung and sent to the lab for screening. The doctor was suspicious that the fluid buildup was the result of cancer cells attaching to the outer lung tissue and lining and he needed more information to know how to proceed...

Upon returning to his shared room on the third floor, Dad was ready for a nap. He reported slightly better breathing, but he didn't sound much better yet. He was looking forward to a long sip of water and lunch. We celebrated together over the new text from my sister. While Dad had been having nearly a half gallon of fluid drained off his lung, she and her husband were in court finalizing the adoption their new son! Dad had become a grandpa again and he couldn't be happier. We looked at pictures and discussed how proud of him he is. He's a good "kid" although he's rapidly approaching adulthood. Dad was so proud of my sister and her husband for their choices and sacrifices over these last two years...

Before he would sleep, Dad agreed to let Mom shave him. Dad has never, in the history of my life, skipped a single day of shaving. Every camp trip, backpack trip, road trip, and lazy weekend day at home included a full shave to get the day started. I can remember him shaving with a razor and a broken piece of mirror out of a stream in the Hellroaring Wilderness of Montana when I was in middle school.  I asked him "why", when it was just us and the horses that would see us. His response was "that's how you get ready for the day". I love my mother for making him feel ready for the day on that day...

Following Dad's first pneumothorax, Mom got Dad "ready for the day" with a shave.

While Dad napped, Mom wrestled with her emotions and his edema. It's hard to watch them hurt.

The doctor had just been in a couple of hours before to let us know post-procedure x-rays showed the right lung was undamaged by the procedure and starting to refill with air. He ordered the procedure for the left lung for Wednesday. He was estimating another 2 or 3 liters would be removed off the left side. For now, we only had to wait. However, while he was in with us, he had lots of Advanced Directive questions for Dad. Mom had a hard time listening to his questions. She felt like they weren't giving her the full story of his potential side effects and prognosis and she let the doctor in on her frustrations with what his body had endured for the last several months. She had been deeply hurt watching Dad hurt and all of that was front and center for her emotionally in that moment.

Dr. Lambret was amazing with her. He validated every fear, every hurt, every concern. He was also blunt with us. He had let Dad know "you are at the end of your life, you need to let us know how you want to be handled if you become incapable of making decisions while you are here." He also let us know that while a person could be doing very well for an extended period of time, there is a chipping away at reserve energy and health; it can be almost imperceivable to the people living with it every day. It is like a slow moving load cresting a mountain; eventually the momentum shifts and there is an event that causes a rapid decent. He warned that this lung fluid and procedures could be the event that causes everything to shift and uses up the remaining reserves of Dad's health and energy...

He said it gently, but it slammed Mom like a ton of bricks.

It became clear that Mom and Dad needed to talk more about a Do Not Resuscitate order as well as his myriad of other options. Would he want life saving measures? The doctor was clear: "To preform chest compressions on your body in the condition that it is in with the full involvement of skeletal cancer, would border on malpractice and not many, if any, people in this hospital would be comfortable participating, including me. You would have to live with the consequences of us saving your life. You likely would have crushed ribs, possibly punctured lungs. I need you to tell me what Dayna is supposed to do if she comes in here in two hours and your heart has stopped."

I suggested Mom get some fresh air. It was nearing 4:00 p.m. and we had been watching Dad sleep while listening to his roommate talk on the phone for a mind-numbing amount of time. Now this information from the doctor seemed to burden her beyond hope. I also knew she had nothing to change into for herself since they had not planned on staying in Flagstaff the night before; we were approaching another night in a hotel. She also wanted to get Dad fresh underclothes so she could help bathe him later. I knew she needed time to think and pray. I told her not to hurry, but that I would call if anything changed.

As I sat alone watching Dad breathe, I was admittedly disappointed. I found myself hoping for the ease of breathing he had had the afternoon before, when he picked me up at the airport. I was thankful for the availability of the oxygen, but I wanted to see him breath better ON it, like he had been OFF it... This was appearing to be no quick-fix. The day had not produced the relief I was hoping for.

Shortly after Mom left, I noticed he was getting sweaty. Dad asked for more blankets because he was cold. As a mom, I know that usually means fever. I called in Dayna, Dad's nurse. She checked his temp, 100-point-something... I said I was concerned and she admitted it wasn't great news, but that it could just be his body's response to inflammation. She'd talk to the doctor right away, she said. A few minutes later she returned. The doctor agreed that because it wasn't too high, they'd just keep an eye on it and give him some Tylenol for now. I called Mom to update her. I wasn't convinced it was anything major changing, but I knew she'd want to know. I encouraged her to stay where she was. She really needs her own sanity break...

Thirty minutes later it seemed like Dad was sounding worse. I decided to video his breathing so I had something to compare it to later. I didn't want to harass the medical staff and I was unsure. I had been watching each and every breath all day. They said coughing would be normal as his lungs started to re-inflate, so I tried not to worry at the drowning sound I heard between coughs...

A few minutes later, the doctor could be heard giving discharge instructions to the roommate on the other side of the curtain. Dad coughed. The doctor stopped mid-sentence and threw open the curtain. "Is he getting worse?!" he asked. "I've been thinking so," I told him. He left to get nurses. They immediately started him on two IV antibiotics and ordered another lung x-ray. Sure enough, Dad had developed pneumonia in his right lung. The doctor was sure that the bacteria was there all along, but that the re-inflating had really given it room to move in. This was a relief in one aspect- it was "community developed" pneumonia, not "hospital developed" pneumonia. He hadn't been there long enough to have picked up and incubated a superbug so the treatment would be much less demanding on his immune system.

They left Dad and I with his new IV pole laden with dripping liquids. Dad woke up and started trying to sit. "Help me up Little Girl," he said. I said "okay, where do you need to go?" "Just get me up!" Was all he responded with. I hit the nurse light. I knew I wasn't strong enough to help him anywhere. His nurse arrived and I told her the situation, the whole while Dad was trying to get himself up.  We quickly decided to take him for a "walk" to the bathroom.  He had not been in there all day and they needed to make sure he could still go. She called a second nurse to help. The bathroom door was about three steps from his bed. Dad shuffled with the help of the three of us and then went limp. He was fearful of falling and found my eyes; "Why would you make me get up?! I can't do this, please put me back in bed and don't make me get up again," he pleaded. I felt terrible. He was hurting and worried and had forgotten...

The three of us hurried to put him back in bed. He was dead weight, hot and confused. It wasn't an easy task, but Dayna and her assistant were so kind and efficient. As soon as he was situated and pain meds were administered, Dad looked at me and said "I need to get up, please help me get up." I was overwhelmed. I called Mom, but then hung up before the call could go through. No, she had been doing this for months. She said sometimes when he is in a lot of pain while he's sleeping he does this. It's like sleep walking and he never remembers it in the morning. I reminded myself of her words and decided that if she could do it, so could I. I would not bother her. I went back to Dad, who was still asking again to get up. I told him "no, we just tried that and you told me not to do it again. Go back to sleep." He nodded in agreement and obeyed.

The nurses returned a minute later. While they were working on getting Dad comfortable and his fever down, which had spiked, and adding medications to his IV lines along with checking vitals, Dr. Kennedy came in. She was a precious, soft and sweet woman. She introduced herself as our Palliative Care doctor. Her job would be primarily to manage Dad's symptoms and keep track of all of his treatments and drugs. She pulled up a chair and tried again to ask Dad a few questions about what his wishes are, what his treatment history includes... Dad was becoming delirious. Whether it was fever, medications, pain, inflammation, fluid retention or what, she wasn't sure, but he was no longer qualified to answer her questions. Dr Kennedy directed her questions to me while she watched Dad increasingly struggle to breathe. I called Mom, she didn't answer... His whole body was now working for every breath. Things had definitely changed and she'd want to know. I was given a wet washcloth to bathe his face to cool him down while Dana set up an oscillating fan pointing directly at his face- to help with breath intake as well as cooling down his body temp. Things were moving fast and started to feel a little desperate. I worried that this was "it" and I wasn't ready.

Then the question came from the doctor: "Would your father want us to intubate him if that becomes necessary? We don't have an Advanced Directive on file for him. Is that a life-saving measure he'd be okay with? I'm starting to think I might need to intubate and move him to ICU for a few days."

My mind raced and the familiar word screamed in the halls of my mind again. "NOOOOOOOOOOOOOOOOOOOO!" It was the one-word thought I could count on hearing anytime my dad crossed my mind. I hadn't let it exit my lips yet, or now...

How can I decided this for him? Of course he would want to live. Could she promise he wouldn't be on intubation forever?

"Yes", I told her, he would want to be intubated. I then that I was aware that my mom was standing next to me. She had walked in to that chaos; she had heard that question. I tried to briefly backtrack and catch her up on all that had happened in the last 15-20 minutes. She just looked at me with an impossible pain on her face. She surrendered herself to the chair in the corner and curled up without a word.

The doctor sat with us for a little over an hour. Almost as soon as she had asked the questions, the medications had taken over. Dad's fever started to come down and he started to regain consciousness. Dr Kennedy made sure he was comfortable and then left us to deal with the emotional chaos we felt.

As I sat there updating all of our family via text, my childhood friend texted an offer to find a hotel room for us. Neither Mom nor I had slept much the night before in the hellish hotel and today had been nearly impossible emotionally. She worked diligently, calling nearly a dozen hotels.  All but one were booked and that one had bed bugs. It was already after 8:00 p.m. and I knew things would get harder. I joined her search.We were able to find one last room, a suite with a fancy price. Although it was probably a fancy suite in the 70's; it wasn't so much for 2016. It didn't matter, this one was clean and had hot water.

Thankfully, as a result of the effort and energy required for Dad's new health status, they were now looking for a single room for him to transfer to for the remainder of his stay. Having a roommate was hard on everyone, including the guy on the other side of the curtain... Dad had been lulled to sleep by his medications and physical exhaustion and because the trauma of the evening had been put to rest along with his fever; we'd wait until Dad was moved into his new room before deciding to get some rest ourselves. Meghan was to be his new nurse in the new unit. She promised to call me as soon as the scheduled procedure was assigned a time for the following day. I knew mom needed sleep and I didn't want to take her to the hospital any sooner than I needed to.

The suite, despite it's cold and damp interior, had a gas fireplace. Mom and I each had a shower and found our way to the living room area. We needed to talk and cry. We discussed the hard things of the day, like Advanced Directives... We also discussed prior conversations I had with Dad this fall when he was here. At that time he had reminded me that God wants us to live as Christians, but that he also wants us to die like Christians... Mom had been incapable of discussing any aspect with death with him and he with her. She needed to LIVE and stand for LIFE as long as he was living. She had thrown herself fully into nourishing him with living foods and supplements and discussions of anything contrary was more than derailing emotionally. I understood her point of view. She grieved the day, the month, the years... We discussed scriptures and hope through songs sung quietly, internally, over our spirits.  I shared Though You Slay Me (feat. John Piper) by Shane and Shane with her. It was one that Dad and I had listened to and agreed with back in October...

Then we slept. Wednesday would be a new day...

Our cozy fireplace for night two in Flagstaff.

Dad's first full day at FMC. He's looking rougher than yesterday when he picked me up from the airport but he's still able to get out of bed for short periods of time.

Documentation of a Death Well Done- Monday

I feel like I'm losing every precious piece of the last two weeks. I haven't taken the time to process anything and circumstances have required that I press on. So tonight, next to my sleeping mother in a dusty desert Utah town, I'll try to remember everything that brought me here:

It was Good Friday.  My husband and I were on I-90 with a few of our kids, headed West to my sister's place for Easter. I had talked to mom earlier; Dad was increasingly having a hard time catching his breath. That morning a neighborhood nurse friend had come by to check his lungs and heart; she was concerned that the lungs weren't filling properly and his heart was working too hard still. When I called earlier in the day, I had reinforced the nurse's recommendation to get Dad to the doctor. We all knew that it would be a process to get an oxygen prescription covered by medicare. They live at an elevation of over 7,000 feet and breathing can be hard on healthy people, but for someone who is already ill, with an overworked heart, it can be dangerous.

Now I was calling from the road to see how the day had transpired. Mom was emotionally depleted. She had spent the afternoon watching Dad put himself painfully though a myriad of physical tests to prove oxygen deprivation and it had cost him in every way. The doctor had also ordered a chest x-ray, but it wouldn't be read before Monday, as it was now 4:30 pm on a holiday weekend.

Mom is usually very strong emotionally. I'm not sure I've ever seen her over-react in the form of tears. Her quivering voice let me know things were unraveling for her before her cell service cut out. I relayed the conversation to my husband, who immediately started flight shopping for me. Whether Dad needed me or not didn't matter, it was clear Mom could use support. I called her back an hour or so later with my sketched out plan. I would fly out of Seattle on the Monday following Easter. My sister already had tickets for her eldest and her to be there the following week. He had never been to the Grand Canyon or visited Grandma and Grandpa in Arizona. Because their trip was following what would be a very busy work week for Mom and now the oxygen prescription process with Dad, I would act as an extra set of hands, getting guest rooms ready and running Dad to appointments as well as making meals for Mom to give her relief. Both Mom and Dad sounded excited and relieved at the idea.  My husband makes it so easy to serve them! The tickets were purchased before we crossed out of Montana.

Monday morning, March 28th, as I sat at the gate at Sea-Tac, mom and I discussed options for picking me up. I planned to fly into Flagstaff, which was the closer airport, but I'd be in Phoenix earlier in the day. She contemplated coming down to get me sooner. I cautioned against it. Dad had another rough night and I wasn't sure he should be left alone that long and the car ride was no longer feasible for him to Phoenix. We decided a neighbor could be nearby if he needed anything while she was in Flagstaff to collect me.

When I got off the plane, I saw my mom waiting for me. She had a surprise for me; Dad had felt "up" to coming into town to get me! He hadn't eaten much all week and Sizzler's salad bar sounded good to him. After a quick meal, Mom and I decided we needed groceries for a few meals at home. The drive is a little over 70 miles and we weren't sure when we'd be back. We made a dash through a grocery store and headed out of town. Dad was at his limit and was looking forward to his bed.

 Dad waiting in the car for me at the airport Monday.

Dad waiting for his salad to be hand delivered by Mom at Sizzler.

As we headed around the last of the highway sections with trustworthy cell service, Dad's phone rang. We had been waiting all afternoon for the doctor to call with information about Dad's tests from Friday so we could have a plan for the week. It was nearly 5:00 and the doctor was apologetic. He had a crazy Monday and had just finally sat down with Dad's results. His advice was for us to get to an ER. He was unemotional in his approach, but informed Dad that there was quite a bit of fluid around both lungs. In his opinion, the only way to get rid of it would be to drain it and an ER was the most direct approach to getting that accomplished. Dad told him "thanks, but no thanks", essentially. He wanted to be home. He did go ahead and put the doctor on speaker phone so he could reexplain it all to Mom. This time, the doctor was a little more insistent, Dad needed immediate attention. When Mom told him we were just outside of Flagstaff, the doctor sounded happy. The following 20 minutes the doctor spent reiterating to Dad the importance of getting immediate help, while Dad insisted he just needed his bed, besides he wasn't packed and didn't even have his shaving kit... Finally I interrupted the three and asked Dad to go ahead and get checked out "for me".  He relented and told Mom to go ahead and turn around. We hung up with the doctor and headed back into town.

The ER was already filled to the brim with people waiting their turn. Dad was somewhere around the 20th patient who had yet to be seen. After a nurse took his vitals and checked his saturation level, Dad became number two in line. He was in a good mood while we waited for tests to be re-run. There was another x-ray and a variety of blood stuff to wait on. He was denied water, but was given a fancy green sponge with a chemical lime flavoring to help produce saliva. He wasn't impressed. As it turned out, those stupid green sponge-on-a-stick thingies became his least favorite part of the week, and his only complaint.

As sovereign plan would have it, the doctor on duty was the same doctor that had diagnosed him with Stage IV cancer 3 1/2 years prior in that very same ER. He instantly recognized both Mom and Dad. He remembered a surprising amount of detail, considering how much time had passed since their last meeting. He went on to explain that Dad had been unusual back then, and circumstances over the last three years had changed him as a person as well as a doctor. His own sister had succumbed to the disease, which gave him a new respect for patient's choice to deny certain medical protocol when dealing with terminal cancer... As an observer, I was acutely aware that the interaction I was witnessing between that doctor and Dad on March 28th was a closure both of them needed. It was personal, professional, emotional, and endearing.

Because pneumothorax is a procedure most safely done by those who do it every day outside of an ER bay, and because Dad's situation wasn't immediately life threatening, Dad was given an oxygen tank, scheduled for pneumothorax for the following day, and checked in to the hospital under "observation only". He was given a room, complete with a room-mate, on the third floor around midnight. Mom and I made our way to a nearby motel for a few hours of sleep.

Jumping through hoops in the ER.

Because Dad wasn't a complainer and his situation was much less comfortable than ours, I'll spare you from the dirty details of our motel stay. We arrived back at the hospital, slightly grungier than we had left the night before. Tuesday was just beginning to dawn...