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And Then Comes Peace

And Then Comes Peace

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End

Being a caretaker was a lot like being a first time mom. On the outset, I kind of thought caretaking would come naturally and I had rosy expectations of how wonderful this would be. It would be a special time of growth for our family. Sure there would be hard times, but it would be so meaningful that we wouldn’t hardly notice the inconveniences. In reality, it wasn’t as idealistic as I had imagined. I wasn’t as patient or good natured as I’d imagined. Much of the time I was tired, overwhelmed, and didn’t know what I was doing. Our life revolved around Glenna’s care – we even slept with a baby monitor for the times she needed help in the middle of the night. All of our energy was being funneled into surviving. Half the time the kids homework didn’t get done and we were constantly bailing on any plans we made. Just like life with a newborn, keeping everyone alive for another day was considered a success. There was one glaring exception though where it wasn’t like having a baby at all. When you have a baby the future is filled with the hope of milestones and the promise that things will get better, but when you’re caring for someone with a terminal illness the future is harder to look forward to. However distant or imminent, the decline will come and things will get harder.

In retrospect I feel a little guilty about how difficult it was for me. Glenna was truly a gem to care for. She was rarely grumpy or demanding. For the most part, she was extremely upbeat and did everything she could to not be a burden. But still, it was hard.

Because her cancer, at least in her lungs, was shrinking, but her overall health was declining it was sometimes hard to know what to hope for.  When Noel or I would take her to appointments, we would always return extremely frustrated. At the onset, the oncologist team was extremely encouraging. They told us her lungs were improving and the rest of her health would follow. We just needed to wait and she would turn the proverbial corner. So we waited. As the appointments went on, Glenna would be buoyed by the news that her lungs were looking better and we would be frustrated because it didn’t feel like we were rounding that corner. Noel and I would stay up hours later than we should have, debating whether we were just having bad attitudes or whether we were the only people who really saw what was happening. It was frustrating to watch her suffer and we often felt helpless. Many days it felt like she was in limbo, neither making strides to improve nor decline. There was no clear direction on whether we should we be pouring optimism into the hope for a cure or preparing ourselves for the worst. The emotional flip-flopping was exhausting and with no end in sight we worried about our ability to continue indefinitely as her caretakers.

Some dark humor on inauguration day. Glenna often joked that she wanted her obituary to say given the choice of a Trump presidency or death she chose the latter.
Some dark humor on inauguration day. Glenna often joked that she wanted her obituary to say given the choice of a Trump presidency or death, she chose the latter.

Because of the conflicting evidences, it took Glenna a long time to decide whether or not to continue the Tarceva. She hated taking it. Every day when 4 o’clock rolled around I felt like a heartless jerk when I would give her the pill. But Noel and I agreed that she needed to be the one to make the decision to stop, not us, and we tried our hardest not to influence that decision. On February 1st, she made the decision to stop taking the Tarceva and not pursue other treatments, but even having made that decision, it took her 10 more days to decide that she wanted to start hospice. Glenna often said she hated it when people would talk about “fighting cancer” because by that vernacular if you died you were a failure who was either not strong enough or didn’t fight hard enough. When she started with The Denver Hospice, they gave us a family guidebook. These words rang true to me, “Understandably, most people are uncomfortable with the idea of stopping all efforts to cure their disease. It is courageous to fight terminal illness, and it is equally courageous to know when to discontinue treatment that is no longer helpful.”

Hospice was a hard pill to swallow for many family members, but it was a godsend for Noel and I. They came to us and were available for consult 24/7. They brought in better equipment and sent medications directly to our house. Noel and I had both read Atul Gawande’s book Being Mortal and had positive views about hospice. We knew the stats that people that start hospice earlier often live longer and have better end of life quality. Again, we were hopeful. The hope was short lived though. Days after starting hospice, Glenna began to decline mentally. She’d been having hallucinations for months, but with a few exceptions she always knew they were hallucinations. At first, Glenna was sure it was the changes her hospice nurse had made in her drugs. They’d switched her short acting morphine pill to a liquid since it worked faster (which is desirable when one of your main problems is breathing), but because she was so paranoid about it, her nurse told us it was okay to just let her keep taking the medicine in pill form, especially since swallowing was not a current issue. Glenna was relieved to go off the liquid, but she was still loopy. She kept pulling her oxygen cannula off and would become disoriented about where she was. We were constantly calling the hospice nurse line and when the nurse came out to check on her only a few days later she told us that from her experience Glenna was nearing the end. (This was also the first of many times it would be suggested that the cancer might be going to her brain. Scans are no longer done in a hospice situation since the goal is no longer fighting the illness, but based on the number of nurses that suggested this and the experience of a friend whose mom died of lung cancer that spread to her brain, I think it probably did.)

Family changed their lives around to arrive within the next few days and soon our house was filled with her sisters and daughters. Glenna’s paranoia kept mounting. She was afraid of falling asleep and was sure that we were involved in some sort of a shady business scheme. Hospice had us try a couple of different anxiety meds to try and calm her down, but they all seemed to have a paradoxical effect where they actually made her more paranoid and anxious. The final night she spent at our house they tried the last anxiety med in their arsenal. It’s hard to say whether she had a worse reaction to this drug or whether the sleep deprivation had built up to an unbearable point, but her paranoia that been mounting in the preceding days reached its pinnacle that night. We decided to split the night up into shifts. Danielle would take the first shift, I would take the middle of the night shift, and Noel would take the early morning shift. I can’t hardly find the words to explain that night, but Glenna was out of her mind with fear and paranoia. She acted like we were holding her hostage and kept trying to escape. Towards morning, when the anxiety med should have worn off, she refused to take her medicines from us and wouldn’t hardly let us come near her. Her strength had diminished in the previous weeks, but in her bewildered state she was stronger. It was the worst night of my life to date. Worse than any of the nights Cooper had night terrors. When Noel woke up for his shift, he called the nurse hotline and they sent a nurse over immediately. Based on our inability to stay on top of her pain meds and the fact that she had no idea where she was (when asked, she said she was in Provo on the BYU campus – a school she never attended), the nurse told us she strongly recommended a transfer to their inpatient facility.

In my heart, I knew if Glenna left our house she would never come back. The last time she’d been hospitalized there had been a moment as we were waiting for the ambulance. She’d turned to me and asked, “I can come back, right?” Her face had this vulnerable, pleading look and my heart almost broke. I kept picturing her face in that moment and felt like I would be betraying her if I let them take her away. I felt like a child and wanted someone to tell me what was right. In tears, I called called her sister, Marsha. Marsha said they would be right over, but that this needed to be our decision. Fortunately, Danielle and Noel were much calmer and more objective and realized that we really didn’t have a choice.

The Denver Hospice.
The Denver Hospice. Courtesy of their website.

I pulled myself together and arranged for a friend to pick up the kids and take them to church while we figured things out. The transport ambulance came to pickup Glenna. Noel and I followed in our car. The family gave us a head start to take care of paperwork and get her settled, kindly cleaning up our house while we were away. The whole ride over I still felt torn up inside about what was happening, but the second I arrived at hospice I felt my anxiety fall away. There was a special spirit there. When we walked into Glenna’s room she was dressed in a white nightgown and sleeping peacefully for the first time in days, maybe even weeks. When we asked what they’d given her, they said all they’d done was give her a dose of pain medicine through an IV and she’d relaxed. I may never know for sure, but part of me wonders if in all of her trying not to be burden, she just couldn’t allow herself to pass away in our home.

After filling out all the paperwork and talking with the hospice doctor, Noel and I had some time to sit in Glenna’s room while we waited for family to arrive. Noel too said he’d felt a peace when we entered the building. It was  peace that neither of us had felt in months. It would still be six more days before Glenna passed away, but from that point on, we both just knew that everything was going to be okay.

On Miracles

On Miracles

“And whether you believe in miracles or not, I can guarantee that you will experience one. It may not be the miracle you’ve prayed for. God probably won’t undo what’s been done. The miracle is this: that you will rise in the morning and be able to see again the startling beauty of the day.”
― William Kent Krueger, Ordinary Grace

Glenna's sisters trying out chairs for her. The recliner they got her was actually one of the most useful things she had in her final months.
Glenna’s sisters trying out chairs for her. The recliner they got her was actually one of her greatest comforts in those final months.

The lung center clinic Glenna went to is world-renown. Her oncologist is involved in cutting edge research on lung cancer. He has had great success in significantly extending the life of many of his patients and was very optimistic about the chances of extending Glenna’s life. She began taking a “miracle drug” called Tarceva. (If you’ve read Paul Kalanithi’s book When Breath Becomes Air, it’s the same drug that he took.) It’s a drug that is tailored to certain genetic markers and has had an 80% success rate in those that took it. She was on a full dose of the drug for two months. Every time she went in for an appointment the doctors were pleased to see that the tumors in her lungs were shrinking, but we were disheartened because in spite of that, her overall health was declining. She was hospitalized two more times – once right before Thanksgiving and once right after Christmas. She was plagued by stomach troubles, sores on her skin and in her mouth, and bladder infections that were barely touched by antibiotics. She went from being able to go on short excursions with a walker to only being able to make the short trip to the bathroom. In January, they reduced the dose of the drug in hopes that she might still benefit from the tumor reduction, but maybe have less side effects. It didn’t seem to make a difference and on the first of February, she made the decision to stop taking the drug altogether.

There was a lot of wrestling with faith that happened during the four months she lived with us. Glenna is an incredibly optimistic person who believes strongly in the power of visualization. In a text to the family she said, “I am just pouring out my faith and using my sheer determination to get through one set back after another by focusing on the NEXT positive step available to me.” If miracles were granted simply on the basis of belief, there was no one more deserving. I don’t think any of us were hoping for a cure, but we hoped for more quality time. The whole family poured out our hearts to God in the ways we knew how – on our knees, in Rosary, within the walls of the temple – but Glenna just couldn’t catch a break. It was disheartening.

The Denver LDS temple. Photo courtesy of my mom. Check out her work at cindymcconkiphoto.com
The Denver LDS temple. Photo courtesy of my mom. Check out her work at cindymcconkiphoto.com

The week before Noel went to Alaska, we spoke in church. We talked about temples. About their healing power, how they help us catch a glimpse of “the big picture,” bring peace to our lives, and most importantly make it possible for families to be together forever. At that time, I felt completely zen about everything. I just knew everything was going to be okay. But, as we actually stepped into the role of caretakers for Glenna, that peace sometimes became elusive in my daily life. I kept searching for it though and every once in awhile the whisperings of a scripture would come to me. At times it would be words from our church’s Doctrine & Covenants, “Did I not speak peace to your mind concerning the matter?” (6:23) and I would try to remember the initial peace I had felt. Other times the words would come from Galatians, “Let us not be weary in well doing” (6:9). My heart was still heavy, but I was able to keep moving forward and hoping for an eventual peace.

There is a more mature lady who goes to our church. She frequently likes to tell the story of how she had cancer (I can never remember what kind) and was told she had 6 months to live. She was given a Priesthood Blessing and was miraculously healed. She has now lived years past that diagnosis. She has outlived two husbands and is now on her third. Noel gave his mom a priesthood blessing before they flew down from Alaska. He was very upset afterwards because he didn’t feel like he could say the words that would indicate a promise of healing. It just wasn’t God’s will. God’s will is hard to understand. Why does one person get to outlive multiple husbands and another not get to see their grandkids grow up? Robert D. Hales said, “I have come to understand how useless it is to dwell on the whys, what ifs, and if onlys for which there likely will be given no answers in mortality . . . We need to spend our time and energy building our faith by turning to the Lord and asking for strength to overcome the pains and trials of this world and to endure to the end for greater understanding.”

Glenna and I spent a lot of time together and sometimes she would open up to me about her fears. Once or twice she mentioned her fear that a miracle wasn’t coming because she lacked faith or was in some way undeserving. I don’t think she thought these things because she actually lacked faith, but because sometimes it’s easier to know a truth when it’s happening to another person than when it’s happening to you. We talked extensively about miracles and I did my best to remind her, with my limited knowledge, that just because you don’t get the miracle you want doesn’t mean there aren’t miracles. Sometimes the miracle is peace in our hearts or the blessing of our family members being okay without us. And of course there is the ultimate miracle of our Savior’s sacrifice that offers the gift of Grace to each of us. These talks were tender and often led to one or both of us crying.

Everyone came for Thanksgiving and we were able to take a family photo.
Everyone came for Thanksgiving and we were able to take a family photo.

Even though we didn’t get the large miracle of healing that was desperately wanted, those four months were sprinkled with many small miracles. Glenna was able to bear her testimony to us a final time. She was able to spend time with the children. They read books, showed her their art, and watched countless episodes of Magic School Bus together. She was miraculously able to attend the children’s primary program. She had a final Thanksgiving with all of her children, which she said made all of it worth it. Both of her sisters and all of her nieces were able to come visit, some of them more than once. Even though we were certain it was going to kill her, she miraculously survived norovirus. (Which would have been such a miserable way to die.) We personally were blessed to have friends and neighbors show up at our door with food. We were fortunate to have multiple friends that were willing to watch our kids on short notice and for long durations. We may not have gotten the big miracle we wanted, but we got a plethora of small ones that carried us through.

I can’t say that I  understand why Glenna left this life seemingly out of turn or why her final months were riddled with so much pain and struggle. Instead, I’m trusting that God knows best. I’m trying to to let my heart be filled with the peace that only God can offer and focus on the things I do know with surety: That her suffering is over, that she is with her parents and other people she dearly loved, and that someday we will be with her again.  I’m glad I know those things and maybe that’s the biggest miracle of all.

Bonus: Here are a few talks from LDS sources that spoke to me on the subject of miracles not happening in the way you want or expect. I’m including them in case some reader out there is looking for deeper reading.

“Soul and Body” by Robert D. Hales
“Healing the Sick” by Dallin H. Oaks
“Not the Miracle We Wanted” by Brittany King
“Like a Broken Vessel” by Jeffrey R. Holland

 

 

A Rough Landing

A Rough Landing

Noel describes the day he and his mom flew to Colorado as one of the worst days of his life. For most of it, I was generally unaware of how traumatizing it was. The evening their flight departed* they sent optimistic texts to the family – pictures of them next to a moose statue at the Anchorage airport and reassurances that they were feeling calm.  That night I wrote in my journal in anticipation of their arrival, “Buckle your seatbelt for our wild ride!” If only I’d known how truly wild the ride would be, even from the beginning.

Bullwinkle

The next morning, I dropped the kids off at a friend’s house early in the morning and drove to the airport to pick up Noel and Glenna.  I waited anxiously at the cellphone lot and was relieved when I got a call from Noel. Noel was so calm that it almost didn’t register at first that he was telling me they were boarding an ambulance.

Prior to flying, Glenna had gone through a lot of tests to make sure it was safe. Her doctors in Alaska knew she had some fluid on her lungs, but didn’t think it posed an immediate risk. About half way into her flight, her oxygen levels began to plummet. Their amazing United flight attendant, Tammy, busted out the emergency oxygen onboard the plane. They went through 4 of the 6 tanks onboard before landing in Denver. Glenna’s levels still weren’t normal, even with the oxygen, and they called and asked for an ambulance to meet them at the gate.

The United manager at Denver International Airport had recovered from breast cancer herself and arranged for Glenna and Noel’s luggage to be brought curbside for me to pick up. After acquiring their bags I made my way over to the hospital. Two good friends and neighbors pitched in to take care of the kids while Noel and I spent the day at the hospital.

We spent the morning and afternoon keeping Glenna company as she went through a myriad of tests. She cheerfully agreed to let the doctors bring in interns and patiently answered all their questions. Even in her pained and tired state, she wanted to help others. At some point, they took her to another part of the hospital for a thoracentesis where they drained 1.6 liters of fluid off her lungs. (Which explains why she was having such a hard time breathing.) When one of the moms from Cooper’s school walked in I did a double take. I hadn’t known she was a nurse in the hospital’s pulmonary department. It felt weird to run into her in that context; it was like worlds colliding. Seeing her jolted me into the reality that the me that dropped my kid off at school and the me standing in that hospital were the same person. This was really happening. This was my life.**

 

*Flights to and from Alaska are almost exclusively red eyes.
** I am well aware that Glenna’s story affected many people, most notably her. I can only tell my own story, but in doing so don’t mean to diminish the feelings of others, especially those of my dear family. ♥

 

The Backstory

The Backstory

Before I jump into any reflective posts I think I need to set up the backstory. In true Audrey fashion, I’ve been concise, maybe too concise about everything that has transpired.

It was the Saturday of our church’s fall General Conference when we found out Glenna (Noel’s mom) had lung cancer. She called Noel in between sessions of talks intended to uplift us and told him she’d gone to the ER earlier in the week because of severe neck pain. The hospital ran tests and it was then that they discovered she had lung cancer. She didn’t have an official diagnosis at that point, so there was still some part of us that hoped. The next day everyone in the family (her children, sisters, nieces) threw rocks in bodies of water to celebrate Rosh Hashanah in Glenna’s honor. (Glenna was quirky and adopted a lot of different religious and cultural practices that she would often adapt to supplement her religious beliefs.) The act (usually done with bread in the Jewish tradition) is supposed to symbolize a renewal as sins are cast off; we were all hoping for a renewal.

Rosh Hashanah

It was almost two more weeks before Glenna got an official diagnosis. In the meantime, we went about our lives as best we could, but with a lot more praying and fasting than usual. I was in the final days of my long-term sub job and we had a trip planned to celebrate its finish in Keystone, CO. It was during that trip that Noel’s mom called and through tears told him her cancer was Stage 4 and had spread to some of her bones and lymphs. Her doctor in Alaska gave her 6 months to live and didn’t recommend any treatment except radiation, but only to help with the pain not because they thought it would extend her life. Her call was brief because she had many more of those painful phone calls to make. This was uncharted territory for us and I found I was really bad at knowing how to support Noel. Even though the news made the trip less celebratory, we were glad to be away and have distractions to keep us from sinking too far into a depression. That weekend was also the temple dedication for the Fort Collins LDS temple. Noel and I attended the last session and were very touched and comforted by the messages. I wrote in my journal that night that “In all the craziness it’s good to have that rock.”

Rock Skipping
Noel skipping rocks during our Keystone getaway.

Noel has two sisters: Danielle and Joy. Their mom’s diagnosis greatly concerned all of them. Alaska wasn’t offering any care options and Noel’s dad was unable to be the type of caregiver Glenna needed. (He has his own health problems and at the time was working a job where he was basically unavailable for entire weeks at a time.) All of the kids began researching cancer treatment centers in their area and both of his sisters were even willing to move to more accessible apartments (they both live on the top floor). Ultimately, Glenna chose to come live with us because we didn’t have to move and the Lung Cancer Clinic in Colorado was really proactive and optimistic. Let’s be honest though, she came to live with us because we have the grandkids and if this was going to be the end, she wanted to spend as much time with them as possible. We began to prepare our house almost immediately. Noel bought plane tickets to go to Alaska and bring his mom down and we spent an entire Saturday at Ikea where we kept telling each other, “You can’t cry at Ikea.” During all of this, my grandfather also passed away which made our already crazy October have an even crazier finish.

Porter and my sister Hope (his mom) laying flowers on the casket.
Porter and my sister Hope (his mom) laying flowers on the casket.

The airline was really accommodating about changing Noel’s flights. His sister Joy picked him up from the cemetery the second the services for my grandpa were over so he could catch his flight. Noel spent a few days in Alaska helping his parents get ready for this new transition and I spent a few days holding down the fort at home and finalizing the last of our preparations for her arrival. We didn’t know what the future held, but I had a feeling we were never going to be the same.

 

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