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February 28th, 2022 – Post #37
The short version: My mom is still weak, but she looked a little taller today while standing at the sink, using her hands to prop herself up, instead of relying on her elbows. That seemed like a marked improvement – I’d say she’s gained back a foot in stature over the last few days.
The rather raw, and possibly a little controversial, uber-lengthy version: I actually started to write this particular post well over a week ago, thinking it would be short, but didn’t end up having time to post it. Like with so many things, life happened, and I had a decision to make about whether to set it aside until a better time, or plow through (in my impatience to complete something). I’m seeing that the Lord knows best, because several circumstances and conversations have taken place since then, helping me to see a broader perspective on my myopic thoughts at the time.
Dear Friends and Family,
Last Friday (2/18), as I saw the sun rising over fresh snow, from the arm of the worn, leather chair my mom has so often watched the weather and the birds, the following words started forming in my head:
Tiny specks of snow dust
In dawn’s first early light
How can just one snowflake
Glow so beautifully bright?
The sun from up above
Shines down on what’s below
Setting off a fire glint
That makes my heart beat slow
Fallen flakes don’t hurry
They simply sit real still
Resting where they’ve landed
Surrendered to God’s will
Rainbow glints like diamonds
Which put my soul at ease,
That Your love can warm us
Though all around might freeze
God in Heaven fill us
With Your radiant glow
That even in the cold
Your glory we may show
Birds may peck and squabble
And crush a tender flake
Heedless to the damage
Their bustling movement makes
Squirrels may romp and ramble
And trample under foot
Helpless little snowflakes
And where they have been put
Wondering why they’re there
Frail crystals may protest,
“Put me some place safer!”
But our Maker knoweth best
Looking to the Arctic –
Some more conducive place
They might sob, “God, save us –
we perish with no trace!”
It may seem no response
Is given to their cry
As they start to suffer
And then they start to die
The same Light that brightens
Will also melt them down
Like tiny tears of grief
Wept fast upon the ground
Ugly mud will follow
Where white snow once rested
In the in between times
Hearts are sorely tested
But all these things must come
And we must say goodbye
To each tiny snowflake
That captures heart and eye
Forlorn days will follow
Where life seems hard to bear
The bleakness of the weather
Will taint each grieving prayer
And then one day a bulb
Buried beneath the earth
Will show its tiny head
Reminding us of birth
For every mother knows
Who bears a girl or boy
That sorrow has to come
Before there can be joy
So, with all Creation
A pattern is in place
Nothing blooms like a smile
Where tears have once been traced
Frail and melted crystals
Will work with morning beams
Green will soon surround us
Surprising as it seems
And so, we will give thanks
For snow that’s gone away
For what we thought was loss
Brightens each new Spring Day
Hyacinths and tulips,
Knock-out Rose bushes, too
Will bring back tender thoughts,
Reminding me of you
Daffodils shall stand tall,
As Rhododendrons wave,
Hydrangeas nod their heads,
“She’d want you to be brave.”
We may joke of “snowflakes”
And how they’re not real tough
But I smile with wonder
They shine when life is rough
When their beauty’s broken,
Delicate edges marred,
They may want to protest,
“Our lot is far too hard.”
When heat distills us down
And strips all else away
And seeing what remains
Fills our hearts with dismay
When two parts hydrogen
Cannot come up for air
And one part oxygen
Complains, “Life’s just not fair.”
Thinking, “I’ve had enough!”
In moments of doubt, we find
We’re made of tougher stuff
Colors will soon spring forth
Where barrenness once lay
A melody will rise
As we give thanks and pray
Seasons come and then go
This one will pass us by
Sunshine gives rest and joy
And storms may make us cry
When summer comes, please smile
Pick “rosebuds while ye may”
Don’t long for what you had
Enjoy the sprinkler’s spray
For God in Heaven knows
Right when to give and take
Just when we’ve reached August
It’s time to get a rake!
And then some sleepy morn
The ground will be made white
Upon the evergreen
Two blue jays will alight
One flake among billions
Will sparkle in the snow
Capture my attention
And at that time, I’ll know
Even though I have lost
The cycle starts anew
Someone will catch my eye
Reminding me of you
And how for a season
You sparkled among men
Better yet, up above
I’ll know you Live again
The day I started jotting down those words, I was contemplating driving to Indiana, but was trying to decide if the roads would be clear enough to make the trip. One of my mom’s childhood classmates, Harliss, had just lost his wife, Margaret, to a glioblastoma brain tumor after a two-month battle.
Harliss was also brother-in-law to my mom’s brother, Danny, who died of a glioblastoma brain tumor in September of 2019. During the seven months that I saw my uncle suffer, Harliss and Margaret reached out to us – delivering green beans and baked goods; and sending notes with encouraging scripture. I don’t think I’ll ever forget the day I was so overwhelmed with mowing multiple acres in the midst of our very bleak circumstances. Suddenly, just at the top of the hill, Harliss came riding up over the horizon on his tractor, like a hero in overalls. He came to help lighten the load, and I don’t know if I could ever express how much that lifted my heart.
After Danny was gone, and I was missing his stories, Harliss recounted many he’d told, and added more from his own repertoire of life experiences. He taught me how to change the sparkplugs in my uncle’s truck, and he and Margaret invited me onto their front porch and into their living room to talk and cry and laugh. I was a stranger, and they welcomed me in.
Years before, one Autumn Day, down in the desert of El Paso, I’d been homesick for Wabash, Indiana, where I’d mostly always spent Thanksgiving. Flipping through a magazine about living in the country, I came across a picture of a tractor, and the background caught my eye.
“That looks like Indiana,” I thought to myself. Looking down, the caption said the restored tractor belonged to that same Harliss of Wabash, Indiana.
“That’s my aunt’s brother!” I said, astonished by the coincidence, but also immensely blessed at how God had sent me a little snippet of Wabash right to my mailbox in Texas, when I was missing it so much.
I didn’t know him at the time, and felt a little embarrassed, but wanted to let him know how that little picture had touched my heart and made me feel less homesick. I had little to no idea that years later, he and his wife, Margaret, would still be helping me not feel homesick, when my circumstances were reversed, and I was in Wabash, Indiana, but was missing El Paso.
Wabash had always felt like home, because of my grandparents, and my love for their farm, but I’d never actually lived there. I seemed to be related to half the town and knew “of” a lot of people; but knew very few of them in person. Harliss and Margaret reached out in kindness and warmth and concern. We grieved with each other, missing Danny together.
Finding out Margaret had the same disease as Danny made me feel sick inside. Harliss described her confusion, and I winced, remembering Danny’s. She had the same surgeon Danny had, and I remembered watching him being wheeled away just before his biopsy, wondering if I’d ever see him again, or if he’d be coherent afterwards. Remembering how Harliss had been there for me, I wanted to be there for him, so I decided to go to Indiana for the Visitation and funeral.
Driving up there, I thought back on the many trips I’d taken to Wabash with my mom. One thing that stuck out to me along the way was something her friend, Joan, had explained to her, which my mom passed on to me, about “borrow ponds”. Pointing to the bridges that pass over the interstate, she’d pointed out, “Joan says, every time you see one of those bridges, look around, because more likely than not, you’ll see a pond nearby. Those are called “borrow ponds”, because the people who build the bridges “borrow” dirt from one spot to build an embankment, so that there will be a hill on either side of the highway – for the bridge to connect above the road.
As I passed each dark and shimmering “borrow pond”, I thought about how refreshing those pools of water must be, come summertime. I’m sure they bring opportunity for relaxation and enjoyment to the people who have access to them. But to do that, they had to go through the process of being emptied. All the soil that space contains had to be clawed away and taken elsewhere, to build a bridge for others to cross over.
Driving down the Interstate, that concept spoke to me. Quite frankly, I was feeling rather empty inside, and exhausted. I needed hope that refreshment and rest would come eventually; but knew that in the meantime there would need to be a submission on my part to allowing some of what I’m made of to be removed first.
Circumstances like this sickness in a loved one require that – the removal of routines, plans, personal space, autonomy, privacy, etc… The very things that seem to make us who we are, end up being scooped up and hauled away. It can be hard not to feel self-protective as one layer after another is stripped away.
Before that gaping void can be filled by “rain” coming down, or “water” seeping up from beneath, there’s an interim which just appears like an ugly, muddy mess. It’s hard to keep the perspective that the core of who we are, and what we normally do, isn’t being taken away for nothing. It’s being piled in a heap, but there’s a purpose. It’s part of paving the way for a bridge that will help someone else pass on “to the other side”.
I kept thinking about that as I crossed beneath one overpass after another, looking off to the right or left, trying to find the “borrow pond” that had given its dirt to build a hill for each particular bridge. The surfaces of those rural pools were black and shining, alluding to the depth of what had been dug away. Light shimmered on the rippling waves – making them stand out among the less glittery corn and soybean fields that make up most of the scenery along that drive. Many of those “borrow ponds” had been dotted with water slides, docks, and other indications that they’d become pools of refreshment, because of the very fact that they’d once endured the “trauma” of having their “terra firma” stripped away.
It made me think of how the people who have most refreshed me throughout my life have been through seasons of significant grief, where what was most precious to them was stripped away. In allowing themselves to surrender to their circumstances, and be refilled with something better, those same people have had a magnetic way of drawing me to them, like swimming holes on a hot summer day.
I could see how this clawing away of what I wanted to hold onto could eventually be used for good, but I didn’t want to go through the process. I was dreading the coming week, knowing my mom was scheduled to start radiation.
I saw my uncle, Danny, go through radiation. He was scheduled for six weeks, but they changed it to three. I knew why. No one said it, but they didn’t have to. A glioblastoma brain tumor is basically a death sentence. Within three weeks, getting him in and out of the car five days a week was becoming impossible. His exhaustion felt torturous to watch, like someone had a thousand rubber bands, pulling mercilessly on my insides.
In the lobby of the radiation department, by the door, there was a bell hanging. From time to time, patients completing their treatments would ring that bell, signifying they’d graduated from their prescribed radiation. People would clap and cheer, and they’d get a certificate, signed by the staff. I was glad for those with “treatable cancers”; but felt sick inside for Danny. I’m sure that day is a celebration for some, depending on the kind of cancer they have, but in my uncle’s case, I knew it was just one step closer to, “There’s nothing more we can do.”
When I’d pass by that bell, a phrase would run through my head, “For whom the bell tolls”, but I couldn’t place its source. I’m sure some English Literature teacher from my past would be disappointed, but I couldn’t recall why that string of words was stuck in my head. Looking it up the other day, I found it is from John Donne (1572-1631). Here it is in part:
“PERCHANCE he for whom this bell tolls may be so ill, as that he knows not it tolls for him; and perchance I may think myself so much better than I am, as that they who are about me, and see my state, may have caused it to toll for me, and I know not that…Who bends not his ear to any bell which upon any occasion rings? But who can remove it from that bell which is passing a piece of himself out of this world? No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee. Neither can we call this a begging of misery, or a borrowing of misery, as though we were not miserable enough of ourselves, but must fetch in more from the next house, in taking upon us the misery of our neighbours. Truly it were an excusable covetousness if we did, for affliction is a treasure, and scarce any man hath enough of it. No man hath affliction enough that is not matured and ripened by it, and made fit for God by that affliction. If a man carry treasure in bullion, or in a wedge of gold, and have none coined into current money, his treasure will not defray him as he travels. Tribulation is treasure in the nature of it, but it is not current money in the use of it, except we get nearer and nearer our home, heaven, by it. Another man may be sick too, and sick to death, and this affliction may lie in his bowels, as gold in a mine, and be of no use to him; but this bell, that tells me of his affliction, digs out and applies that gold to me: if by this consideration of another’s danger I take mine own into contemplation, and so secure myself, by making my recourse to my God, who is our only security.”
*I have to admit, I had to look up the word “promontory”. According to Webster’s 1828, and learned it means “a high point of land or rock” – which juts out into a body of water.
The more I read those words, the more I’m in awe of the depth of them. Driving up to Indiana, looking at all those bridges and “borrow ponds”, people kept coming to mind – those who have helped me cross over grief before, because of the comfort and wisdom they’ve given; and people that have come to mind, because I know they have suffered. I don’t only think of my mom’s friend, Joan, when I see “borrow ponds”. I think of her when I see construction signs along the interstate, and think of how she lost her son, while he worked along the road, and how my mom reminds people to go slow whenever we pass orange signs, recalling the heartache her friend has borne. I think of Joan when I see the boots that she gave to Danny’s son, which once belonged to her brother, before he died. We can talk of Cinderella and tiny slippers, but on the other end of the spectrum, not everyone can fit a size fifteen either. Those thoughts remind me of Danny, and how he and Joan had a mutual appreciation for cows. I was glad they’d met. I’m always glad to talk to anyone who remembers him.
I don’t know why she lost her son or brother, or why I lost my uncle; but then I think of my parent’s neighbor, who lost her sister to a glioblastoma brain tumor soon after Danny died, and how my pain felt somehow less senseless by being able to share in her grief, even just a little. In my heart, I almost felt like begging her, “Please let me somehow share in your pain, so that this hurt in my heart feels less futile.”
She’s been a neighbor most of my life, but I don’t know if we’d ever had a real conversation before glioblastoma wreaked havoc in our lives. For my part, what she shared felt painfully familiar, yet mutual suffering seems to break down a barrier that offers fellowship between people who would otherwise remain strangers, even if they greet each other on a regular basis.
Last week another one of my parent’s neighbors lost his dad to pancreatic cancer. I hurt for him; but am grateful for the empathy and compassion he’s showed to our family, having traveled ahead of us on the trail of dealing with pancreatic cancer.
Seeing the same type of bell in my mom’s doctor’s office made me feel sick, as I remembered back to my uncle’s battle with cancer and being in the waiting room with him.
When someone would ring the bell to signify their completion of radiation, and people would cheer, my stomach would knot up on the inside, wondering how I’d smile and clap for Danny when his day came. I wanted to be supportive, but felt like I’d have to be fake, because what I really felt like doing was throwing up, sobbing – and just plain falling apart.
The day he was to ring the bell, I was absolutely dreading driving Danny and his wife to the hospital (she was also undergoing radiation at the time). It “just so happened” that someone else volunteered to take him, not knowing the turmoil going on in my heart. I was so grateful. I didn’t mind driving any other day, but God knew my limitations, and tenderly spared me from going that day.
As my parents and I sat in the waiting room a few weeks ago, before my mom’s appointment with her radiation oncologist, I looked over and saw that they had that same sort of bell up on the wall, with a sign that read:
Life is not measured by
The number of breaths we take,
But by the moments that
Take our breath away,
Smile – this is one of those moments!
I felt like I couldn’t breathe, but I couldn’t smile about it, having a horribly familiar feeling about what we were entering into. The gleaming bell hanging below reminded me of the ones they sometimes hang in Taco Bells. I don’t remember for sure, but it seems like there is a sign under those that says something like ‘ring this bell if you’d recommend us’, ‘ring this bell, if you enjoyed your meal’ – I can’t remember for sure. I just know that I’ve smirked in the past, wondering if the same customers who sounded the bell would still ring it twenty-four hours later, when the after-effects of Taco Bell set in. I couldn’t help but make a correlation in my head between that and the after-effects of radiation, having heard from many people that the treatments in themselves aren’t so bad – it’s the aftermath that hits so hard.
Anyway, the day of her radiation consultation we were called into the office, and a friendly medical professional asked my mom all sorts of questions and conversed with us with kindness and compassion. When the doctor came in, I’d say it was a different story. I have no doubt he’s got a lot of head knowledge about cancer, but his “bedside manner” left a lot to be desired. He seemed very capable of treating a tumor, but I wasn’t sure he was taking the entire patient into consideration. As he rattled off a long and obligatory list of possible side effects, which sounded horrific, I was squirming inside, wondering if this was really worth the risk. I knew with standard radiation, skin burns, and blisters were a possibility, and nausea and fatigue came with the territory, but when he started talking about the possibility of accidentally burning through her liver, or spine, or intestines, or other nearby organs, I was more than taken aback by his calm candor.
When I expressed concern over possible side-effects, he explained, that if my mom started having internal bleeding – like black and bloody stools, they would stick a camera down her and be sure to get her into surgery within a few days, but if she started vomiting blood, they’d get her into surgery that same day. I took little comfort in that sort of assurance. I think he could tell.
I felt like he was in “sales mode” as he explained that this particular type of radiation isn’t offered to many people – there is one machine in St. Louis, and the next closest is in Chicago – five or six hours away. When I asked him what he’d do if this was his mom or dad, he said, “100% – no doubt – I’d do this – 100%”. His confidence made me all the more uneasy, especially since he’d already said the treatments could be a double-edged sword – they might reduce the tumor on her portal vein to relieve the pressure on it, but at the same time they might also create scar tissue, which would actually compress it worse.
He then went on to tell us about a clinical trial to try and reduce scarring, wanting my mom to volunteer for that. I completely understand and respect the fact that to make medical advances there have to be people willing to try experimental treatments. I’m a supporter of “right to try”, especially in terminal illness, but I think in these cases doctors ought to be very upfront that they don’t know the outcome, and not offer false hope, or use manipulation in any way. When I asked if she could just do one treatment and see how it went before deciding to continue, he shook his head and said she’d need to complete all five.
He seemed in a great hurry to get my mom to sign her consent. It felt like we’d been put on a conveyor belt, with no time to weigh the options. When he realized he didn’t have a pen and said he’d be right back, I was relieved, hoping we could discuss what he’d said for a little bit. Then a pen was found in the room, and my heart sank, feeling like I would be rude to ask for a few minutes to talk it over privately first. He’d already seemed offended when my mom asked about his credentials, so I kept my mouth shut while he handed her the clipboard, reasoning in my head that she could still back out, if she wasn’t comfortable; but as I watched her sign her name, I felt like I was witnessing her agreeing to a Time-share that our family would be locked into forever.
When we’d left the office, my mom talked about how she didn’t really like him. Granted, her surgeon was a tough act to follow. She absolutely loved him and had told my dad that he just seemed so down-to-earth, and because of that, she was just sure he’d played baseball. Sure enough, she soon mentioned his name to someone, who said, “That name sounds familiar – I think he was on my baseball team in high school.”
My mom nodded, saying, “I knew it – I just knew he played baseball. He’s confident, but very laid-back about it. I told Dave, I bet he played baseball, and he did.” This character assessment cracked me up, and I bet if you know her, you can just hear her saying that.
Her radiation doctor didn’t seem like much of a team player. I could picture him as more the ping-pong type – where any question given would be returned with a hard and fast answer – with no seventh inning stretch to mull over options.
All this had happened a couple of weeks before February 18th, when I decided to drive to Wabash, knowing it was the last weekend before she’d start radiation on the 22nd. Somehow, I knew I probably needed to step back for a few days to ready myself for what was coming.
Seeing Harliss’s family at Margaret’s funeral, and knowing they’d been through circumstances similar to what I’d faced with Danny, and what I was anticipating facing with my mom, was a great comfort to me. After the service on Saturday, while we sat in the house that Harliss and Margaret were married in, and where they had remained together for nearly sixty years, I laughed and cried with his family, as they shared stories of things they remembered. Though my heart hurt so much for them, their joy and perspective from having helped Margaret pass over to Jesus helped to strengthen and refresh me. Harliss said more than once, “I just don’t know how people that don’t know the Lord get through this sort of thing.” I nodded, knowing what he meant.
Some other friends, Dave and Debbie, had welcomed me to stay with them when I got to Wabash. I felt like being around them would be a good retreat to ready myself for the coming storm, especially since I know they are no strangers to grief. As I pulled onto their street, I remembered back to last July, when my mom called to tell me of her diagnosis, and I slowed down and parked on that same road to hear her cry. It’s the same street she grew up on. It’s the same street her mom and dad grew up on. It’s the same street each of their funeral processions traveled down, and Danny’s too; and some day, I don’t know when, it will be her turn. Just after the city limits, the name changes from Pike Street to Mill Creek Pike, but essentially, it is the same ribbon of road. The Friend’s Cemetery is there – out in the country, between her grandparent’s farms, and the farm her parent’s dreamed of buying, and then did.
Turning onto Pike Street a week and a half ago, I thought through a lot of what has happened over the last seven months since that day when I first heard my mom’s diagnosis, and how a few days before that, I’d felt like God was admonishing me that I was about to enter a storm where I’d need to trust Him like never before. I want to say, that God has proved Himself so faithful and kind in the midst of this storm.
Monday morning, still at Dave and Debbie’s house, I stayed in bed longer than usual, feeling like if I just didn’t get up, Tuesday (the start of radiation) wouldn’t come. Of course, the sun wasn’t going to cooperate with my suggested itinerary, so eventually, I crawled out from under the covers and got started with the day. God’s tender mercies are indeed new every morning, even on days when we dread what’s ahead.
That night, I returned to St. Louis, knowing the routine that had finally grown up like tender grass, from living full-time at my parent’s house for the previous two months was probably about to be torn away. Let’s just say that my moving back in has been “an adjustment” – for all three of us – a mixture that could be seen as both trying and comical, depending on the moment, and has definitely provided plenty of “character-building” opportunities for each of the three “characters” involved.
Tuesday came, and I tried to prepare myself for duty – just trying to march forward by getting my mom out the door for what I felt in my gut might be a firing squad, disguised as hope. The doctor had said if my mom did high-beam radiation, she might be able to live another year or more. We never did get a direct answer about what her lifespan would likely be, if she just did nothing. And I guess that’s my hang-up with some of these treatments. Apples and oranges are often compared – chemo with radiation, compared to chemo without radiation, etc… but when it comes to terminal cancer, I haven’t heard any oncologists offer data comparing their patients to people who do nothing.
Maybe because those patients walk out of their offices and say, “Forget this, I’m just gonna live until I die,” and aren’t tracked. Maybe the doctors could do better to inform their patients on the benefits of treatment, if they said to those people who decided to just walk away, “We respect your decision not to undergo our suggested treatments; but is there any way we can follow your case, so that we can better understand whether our treatments are really helping people to live longer, or not?” Maybe they do that, but I haven’t heard any data.
It puts me in mind of science experiments back in middle school, and I have this nagging little voice protesting silently with a questioning tone, “But isn’t there supposed to be some sort of control group with every scientific experiment? What if she doesn’t do anything? What’s the data on that? Are your treatments sound, or are they just a hypothesis?”
Every doctor we talked to admitted they didn’t have a cure for pancreatic cancer, which I could accept, but I didn’t like them not saying the difference between doing their treatments (which seemed infested with side-effects) and doing nothing. Maybe they didn’t know; or didn’t want to know. Not to be ugly, or question anyone’s motives, but there is a lot of money involved in all this medical intervention. Sometimes that line, “We’ll just do what the doctor recommends,” makes me feel like saying, “But that’s what they sell – it’s like asking a used car salesman, “What kind of car do you think we should get, and how much do you think it should cost us?” I’d asked the radiation oncologist a few questions; but felt too intimidated to press very far against anyone wearing a white jacket, because surely, they know more about science than me.
I feel rather controversial sharing all this, because some people have thoroughly mistaken my perspective on my mom’s cancer, accusing me of not believing in any kind of medical prevention, because I suggested hospice from the beginning, saying I think that we’re just supposed to trust God, and assuming I think to do that means do nothing. That’s not my thinking at all. I think every diagnosis and individual are different.
It’s difficult to express myself in this matter. I’ve found myself saying, “If she was sixty, maybe I’d think differently,” but that insinuates I’m saying, “She’s eighty, she shouldn’t do anything,” which isn’t what I’m saying at all. In my mind, age is not the issue. My mom’s mother lived until she was nearly one hundred and two, and I struggled with thinking she died before I was ready to say goodbye. My mom’s aunt had cancer in her nineties, and I was glad she got treatment, or she might not have lived to one hundred. My mom’s age was not the reason I was concerned about her going through “treatment”, it was her overall condition. If she hadn’t already been so fragile, or it she’d gotten a different kind of cancer, I might have had a different perspective. Pancreatic cancer is quite another deal compared with a lot of other types.
Plus, for several years now, my mom has dealt with loss of strength, mobility, and energy. In her particular case, I have questioned the benefit of using therapies that are known to increase fatigue, especially when her chemo doctor told me, “This is not a cure – we are just trying to buy her some time.”
There is such a tender balance between quantity, and quality, of life, and in the case of pancreatic cancer, there aren’t many choices that guarantee either one. None of us ever wanted to be in a spot where she had to make these sorts of decisions.
Our family has joked for years about an often-used phrase, usually said with a nasally, condescending tone, “I don’t know why you want to do it that way – that’s not the way I would do it!” When it came to discussions about cancer treatments for my mom, my parents, sisters, and I were all coming from different perspectives and varying life experiences. Not every conversation went smoothly, and it was easy to misunderstand and be misunderstood – especially by others who only heard of those talks second-hand. Sometimes it felt a lot safer just to remain silent. Along the way, friends, relatives, and perfect strangers offered their perspectives, some were appreciated, and some were exasperating.
It was hard for me to give my honest perspective at first, because it meant exposing wounds that had finally begun to heal from watching my mom’s brother suffer the exhaustion of going back and forth to treatments in the midst of his terminal illness. Maybe my motive was to spare myself from the torment I felt sure was coming with trying to get my mom dressed and out the door to appointments, that I felt would only further increase her decline. I dreaded that thought.
I can’t say I got off to the best start of being supportive, when she did decide to do chemo. Early into the treatments, seeing her sickeningly rapid loss of strength; the blisters that covered her skull, where her shiny white hair had been; the dull, marbled look of impending death that replaced the normal twinkling blue of her eyes; and the unexplained, bright-red blood that covered the white of one eyeball, my gut reaction was to silently cry out inside my head, “They’re killing her!” at the same time I was trying to force myself to smile and come across like her looks weren’t disturbing to me.
It was very hard to stand aside and recognize this was her choice, when instinctively, I wanted to protect her from anything I thought might cause her further harm; or increase her suffering. I felt a sense of responsibility to convince her to change course, and I felt like it was killing me to have to watch and not be able to anything about it. I suppose it’s something like arm-chair coaching when a game is on TV – where people start flailing their hands, directing the players about what they ought to be doing, from their sofas. Everyone knows it’s senseless to shout directions at the television screen, but what sports fan hasn’t done that? Of course, my mom could hear me, but once she made her decision, I recognized it was best to just put myself on mute for awhile (not that I did that perfectly), accept that it was up to her to choose her course of action, and just look for ways to support her in any way I could.
She has wanted to live longer, so that she can spend more time with friends and family, but then knowing that chemotherapy compromises the immune system, she felt she had to be extra-cautious about being around people, because she was scared to get sick from them. The very treatment that might possibly extend her life (though this wasn’t guaranteed) also isolated her. It also increased her neuropathy, causing daily pain and further loss of mobility. She showed definite signs of “chemo-brain” – increased confusion and forgetfulness about who she’d talked to and what they’d said, so even when phone calls replaced visits that would have been in person, I still felt like chemo had cut her off from people, inadvertently.
Since last Tuesday, this has increased considerably. It has gotten difficult for her to follow even simple instructions sometimes. She’s very sweet about it, which makes us feel even worse when we lose our patience. Since my dad and both of my sisters are at the house today, I decided to spend the day away. I don’t want to come across as demeaning in sharing this, but before I left, as I was saying goodbye, I almost felt like I was leaving a child with a babysitter, instructing her to remember to listen to what they were telling her. Cognizant enough to know her memory isn’t working right, she asked me with a sweet innocence, “Have I not been cooperative?”
I felt terrible trying to assure her that I knew she wasn’t trying not to cooperate, but that she needed to listen to what people were telling her when they were trying to transfer her or help her to walk. She has a tendency to grab the handles of her walker, when we’re trying to sit her down in it, because she fears she might fall, which is understandable, but can be kind of hard on our backs, as we try to convince her that we’ve got her, and if she’ll just trust our directions, we’ll get her where she needs to go.
As I explained this, she nodded, but I need to remember that she probably won’t remember. I think my frustration with her forgetfulness isn’t nearly as frustrating as my frustration with myself when I forget that she forgets.
I’m seeing more and more that in these circumstances, cancer itself isn’t the biggest battle. It’s more like a crucible that causes all of our character issues, underlying conflicts, vastly differing opinions on how things ought to be done, and flat-out craziness to rise to the surface and force us to figure out how to cope and how to love each other through the molten lava that comes pouring out from an otherwise dormant volcano.
Erica and I were laughing recently about our individual perspectives on one of our earliest memories. I think I was about five, which would have made her about four. I’d gotten mad about something and decided I was going to run away from home. I packed all my stuff into brown paper grocery sacks and set them by the front door. When I realized there was no way I could carry all those bags, I abandoned all my worldly possessions, and stalked up the street, fuming over some injustice I’ve since forgotten. I like the phrase “He who would travel happy must travel light.” I was traveling “light” for sure, but I definitely didn’t have the “happy” part down pat.
More than three blocks into my protest march, I caught a glimpse of our two-toned blue van inching along in my peripheral, with my mom driving. As she followed along at a snail’s pace, applying her powers of persuasion to try and convince me to accept a ride back home, Erica sat in the front passenger’s seat, enjoying the show, despite not having a tub of popcorn and a soft drink, while she watched with interest to see how the drama would unfold.
I don’t remember my mom’s words. Somehow, I ended up riding back home in that Ford Econoline, but I don’t think she demanded that, knowing I was mad about something that was significant to me. She could have parked the car, picked me up, and tossed me in, kicking and screaming; but I think she took a wiser approach, acknowledging my anger, talking me into coming back home, and maybe even making me think that it was my idea. I’m not saying every time a kid throws a fit, that patient coaxing is the answer, but I believe there is a tender balance between expecting obedience and acknowledging that the loyalty of a little heart is at stake. Compliance does not necessarily equal love, and I think in that instance, she had the wisdom to see that.
I can’t speak for everyone, but I think as a family, going through all of this together, there have been times when we’ve each probably been tempted to “run away from home”. My mom taught me early on that it’s best to stick things out, even when it seems easier to leave. I know there were times through the years when even she was tempted to run away from home. I’m glad she stayed.
Lest I sound too sappy, I’ll add the caveat that everyone in my family knows I would have been okay with running away from “home” as a family this year – if it meant moving into a house more conducive to her condition. There are things about this house that I really do like, but it’s not exactly built with our current circumstances in mind. I’ve been Rubik’s-cubing the furniture quite a bit, and have ruffled some feathers in the process, trying to make the house more accessible to her, and her care more accessible to us. It’s a tender balance between honoring the way my parents have set up their house and trying to adjust things efficiently to keep up with her rapidly changing needs. Lately, in that realm of our lives, I’ve probably had the sensitivity level of a snowplow.
One of my more decisive friends recently sent me a picture of a little placard that read, “I’m not bossy… I just know what you should be doing”. This humored me, considering our current circumstances, because of my past observations of what things helped, and what things hindered, in prior experiences with people I’ve helped care for in their homes. In my whirlwind to rearrange things and make things run more smoothly, I might make more progress, by taking note of my mom’s methods that day she patiently drove along at a snail’s pace, convincing me it was my idea to come back home, but if I disclose that tactic here – people around the Purcell household might suspect something is going on… 😊
Anyway, after shifting and moving several things, we were able to get a hospital bed into my mom’s room of choice, but on her first night, my dad found her in the bathroom by herself at about eleven P.M. How she managed to get there, we have no idea. She could barely stand at the time. Four hours later, I found her on the edge of the bed, preparing to make another trek to the toilet. After that, I didn’t trust her on her own, so after getting her back into her hospital bed, I crawled in with her, trying to figure out how to fit a second bed into the smallest room in the house, realizing that with that addition, the closet doors would need to come down to give enough elbow room to use a draw sheet. I’d already disturbed her several times squeaking them open and shut, so the additional moving solved a secondary problem.
My mom and I talked off and on in intervals through the night, and at some point, she asked me if I was sad. To say I wasn’t, wouldn’t have been completely honest, but to say I was, wouldn’t have been the whole truth either. A year and two months ago, I could have never foreseen having a slumber party with my mom. Coming from two opposite sides of the political spectrum had put us at odds, which made having a long-distance relationship difficult, because how do you have a relationship, when there aren’t really that many “safe topics”? Even talking about the weather these days can cause a storm, depending on whether, or not you believe certain things. Can anyone else relate to this?
If we’d lived closer, a day-to-day relationship would have seemed easier, because we could have been doing things together, but talking almost always led to some sort of barometric collision. Then, the day after the inauguration, she fell and broke her arm, and so the next day I flew to St. Louis, thinking I’d be there for a few weeks. Well, that was my plan, but once again, God had other ideas.
Of course, I was sad that she broke her arm, and then her foot, and then got diagnosed with terminal cancer, and I will definitely be sad when all I have is memories (and probably a lot of paper sacks full of stuff I wish she could carry away with her), but I have to recognize that all those things – the brokenness and bad health from the last year, and even the impending dread of loss, has been the impetus that’s brought us back together, so I can’t say that I’m completely sad.
Sometimes things have to break in order for healing to take place.
When I asked her if she was sad, at first, I think she said, “Not really,” then added that she would be sad to be leaving all of us.
When I asked her if there was anything she was looking forward to, I didn’t know what kind of answer she’d give – if it would be something we’d written on the calendar, like her grandkids coming, or something more eternal.
I wish I had a recording of her voice, which was so childlike, as she told me, “Yes – I’m looking forward to seeing Jesus. To seeing Jesus and Mary – and hearing the whole story.” Then she said it again, “To see Jesus – and get to hear the whole story.”
I have to admit, I sort of wondered why she added Mary in there, but there we were, laying in that bed, squished together, and I can’t tell you how many times she’d asked me if I was warm enough, or if I needed more covers, or if I was okay, or if I had enough room. She just kept checking on me. And seeing how she’s still very motherly, even when our roles seemed so reversed, I’m guessing she was wanting to know what kind of strength it had taken to be the kind of woman Mary was, in raising a Son, and tenderly caring for Him, knowing He was destined to suffer and die for the sins of the world, and surrendering to that loss.
As for Jesus, her words reminded me of what John said, at the end of his Book:
And there are also many other things which Jesus did, the which, if they should be written every one, I suppose that even the world itself could not contain the books that should be written. Amen.
I thought back to how after Margaret’s funeral, Harliss invited me to come sit with his family. I loved listening to their stories as someone would recount one thing, which would remind someone of something else, and so on and so forth, until hours slipped away, but it felt like no time had passed. The precious hours spent with them reminded me of being back at my grandparent’s kitchen table, which was probably my favorite place on Earth, because I loved to hear the stories that got passed around along with the applesauce, well-buttered mashed potatoes, and slices of white bread, which were spread generously with soft margarine. Our feasts were usually preceded by oatmeal cookies, and followed with multiple choices of pie, sliced into very few fractions. When we got too full, we’d wander into the living room, where more stories would be told while we waited for space inside our stomachs to allow for another serving of some of the leftovers.
When my mom talked about looking forward to hearing “the whole story”, it made me think more about Heaven, and how those of us who trust in Jesus Christ as our Savior and Lord have a wedding supper to look forward to. I never thought of it before, but I’m thinking maybe we aren’t just going to be eating, but also getting to hear “the whole story” – about all that Jesus did here on Earth, and maybe even what He did in each of our lives, as individuals.
Like what happened the other day at Harliss’s house, one remembrance may lead to another, and time will pass without us even realizing it, not that it will matter, because we’ll have all of eternity to hear what He’s done and rejoice together over how He’s touched our lives. The things that don’t make sense, will be made complete. As someone has said, we’ll finally see the front side of the tapestry, which only appears to be messy knots and tangles from our earthly perspective.
I think it was Thursday that I was talking on the phone with Erica, and she was telling me she’d just bought a ticket to fly to St. Louis the next night. She was asking how things were going at home, when Oskar, who is five, happened to interrupt our conversation to ask, “How do you spell Titanic?”
In the moment, that felt like a very fitting response, and I laughed at the irony of his innocent timing. My parents and I were exhausted, her pain was still out of control, we didn’t know the extent of the damage the radiation treatment had done. It felt like everything was sinking.
Then I remembered that even as that great ship went down, the band continued to play. Those who survived remembered hearing a song, written by Eliza Flower, called, “Nearer, My God, to Thee”. It must have been a comfort, despite the horrific circumstances, both to those who were perishing, and those who were spared amongst the frigid waters, as they watched that stunning vessel slip beneath the frigid waves and witnessed their fellow passengers disappearing while singing:
Nearer, my God, to Thee, nearer to Thee!
E’en though it be a cross that raiseth me,
Still all my song shall be, nearer, my God, to Thee.
Though like the wanderer, the sun gone down,
Darkness be over me, my rest a stone;
Yet in my dreams I’d be nearer, my God, to Thee.
There let the way appear, steps unto Heav’n;
All that Thou sendest me, in mercy giv’n;
Angels to beckon me nearer, my God, to Thee.
Then, with my waking thoughts bright with Thy praise,
Out of my stony griefs Bethel I’ll raise;
So by my woes to be nearer, my God, to Thee.
Or, if on joyful wing cleaving the sky,
Sun, moon, and stars forgot, upward I’ll fly,
Still all my song shall be, nearer, my God, to Thee.
There in my Father’s throne, safe and at rest,
There in my Savior’s love, perfectly blest;
Age after age to be nearer, my God, to Thee.
I’ve heard that while those people sang, there were others who handled it differently. Erica’s been listening to an audiobook which said some people shot themselves, while others got wasted, or dressed up in their finest and danced, pretending nothing terrible was happening.
We each have a choice in how to handle disaster when it strikes.
This is my comfort, and this is my prayer, that my mom’s pancreatic cancer can, and hopefully will, draw us each closer to God the Father, through His Son, Jesus Christ, Whose love and tender mercies we can’t even begin to fathom.
My mom didn’t finish her five days of radiation, so she didn’t ring the bell, but I can still hear it peeling for each of us, like a great big dinner bell, beckoning us Home for Supper.
- I feel like I ought to put a disclaimer in this post assuring everyone this isn’t a judgement on anyone’s medical decisions – it’s just a gut-honest description of some of the struggles I’ve faced watching my mom suffer. I hope it will somehow offer comfort to others who find themselves in similar circumstances, with all sorts of conflicted thoughts swirling through their heads.
*To read more on my mom’s cancer journey from the beginning, or share it, please click below:
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