“If the only prayer you ever say in your life is thank you, it would be enough.” 

Recently (as in yesterday), I came upon these words from mystic Meister Eckhart, imbedded in an interview with the late holyman/poet/theologian, John O’Donohue, and I’ve not stopped thinking about them since, maybe because Eckhart’s words come on the heel of another recent (also yesterday) re-discovery of words—a copy of a letter I’d sent to a neighbor, years ago, when Bob was in hospice, which set flight a barrage of forgotten memories and emotions, which got me thinking about all the ways I’ve keep so many people alive in my life, for better or worse—mainly by preserving their words. Many have entered my life using written words in infinite, expressive, artistic, memorable, life-altering ways—they may not even realize they’re doing it—that become holy imprints of their souls on mine. Of course, there are those whose words give a secret away, that they are utterly void of anything resembling a soul, but those words are still valuable. I keep them for evidence, should the need arise—as in the case of an unscrupulous landlord—or perhaps as a writing prompt for an essay or, who knows how they’ll show up again in my life.

Since Bob died (it’ll be ten years in May, which launched a whole new series of thoughts—maybe that’s the source of the thick sludge that’s settled in-between my cells of late, along with the weather—which is on an upswing!—and pandemic fatigue), I’ve been engaging in a decade’s long process of purging and simplifying, paring things down to make my way back to the essentials. Marie Kondo would likely still tsk-tsk all the things I hold onto, but in my defense, most of my hoarding is now in the form of words—books, old letters, journals, emails, text messages, scraps of notes—if you’ve ever written to me in any way, shape for form, it’s likely I still have your words and your soul imprinted on me. Thank you for your gift of words, a lasting presence in my life. 

In true Jen form, I started wandering down a path following the word “prayer,” to see where it would take me…if I am able to make even a shimmer of sense out of the thoughts that I have wound around, that have wound around me, over the past 24 hours or so, it will be a miracle (another strange, highly misused and abused word that I’ll have to leave for another wandering time), thank you for indulging me.

When my husband was diagnosed with cancer in 2009, for the second time in his life (he was a Hodgkin’s lymphoma survivor, as a young boy in the late 70s), I began a blog, simply as a means to keep family and friends in the loop about what was happening. In a very short time, Bob went from being the most annoyingly healthiest person I knew, to the sickest I will probably ever, so intimately, know. It was like he suddenly disappeared from people’s lives—he wasn’t able to work, or attend family gatherings or outings with friends. He could barely sit upright or stand or walk, consumed by acute, chronic pain that never fully abated in spite of ungodly amount of opioids, the result of a massive bone tumor that had invaded his body, taking up residence on his sacrum. For about a year and a half, I wrote like a motherfucker, to quote the venerable Cheryl Strayed, on my blog, a living, breathing, raging, sobbing, bartering, begging, pondering, scathing, tender meandering real-time testament to a horrific time of our life together. I know now, that if I hadn’t had that outlet, I may have very well imploded. Thank you, Blogspot, for giving me a release valve to for the toxic things that may have otherwise pressurized me to death.

My blog wasn’t even a real blog—I had no intention of sharing or promoting our suddenly myopic world with the whole wide world, only with family, close friends, colleagues (who ended up sharing it with more people than I will ever know, since I didn’t set it up to track such statistics. I’d occasionally receive random messages from strangers around the country, which was both odd and comforting). Thank you, for tying me to others at a time when our world was severely disconnected…

When Bob’s secondary cancer appeared, I was simply going to resurrect the Caring Bridge site that I’d created for him a few years prior, when he had his first massive heart attack—the hazing, I called it, into the fucked-up world of cancer survivorship, another meandering story for another time—see how complicated this is, why it takes me so long to write this, why nothing ever gets done around this joint? Everything is related, it’s all connected, sometimes chasing threads is far more compelling than laundry, sometimes it’s the other way around, when revisiting these memories becomes too much for my heart to hold… but Bob was a private man and felt Caring Bridge was too public; that, and he said I swore too much, I’d be kicked off Caring Bridge for sure this time. So, what started out as our own personal take on Caring Bridge became a dumping ground for me, to empty the deep pockets of my head, heart and soul onto the page and sort through the mess that accumulated beyond capacity every day…most people who read the blog were nothing short of breathtaking in their support, reverence and respect for what we were going through; to them, I am so grateful. Our world had become so painfully tight, we were essentially living at the U of MN for nearly two years, battling an onslaught of crises without reprieve; the internet became a lifeline to almost everyone I knew and loved (which is why I begrudgingly stayed on facebook, when up till that point, truth be told, I think I had deleted my account on at least 3 separate occasions, I was so repelled by it; still am most days today, more truth). Thank you, emails, text messages, cards, even the godforsaken wasteland of Facebook, for keeping me connected to my loved ones, in such a brutally disconnected time.

Bob was in hospice for nearly 5 months, which is a damned long time in hospice years (did you know that you can “graduate” from hospice, which doesn’t necessarily mean you’ve defeated death; it mainly means you’ve overstayed your welcome. You get booted out if you don’t wind up dying within the predetermined time set forth by insurance companies, which is usually about 6 months. True fact. Of course, it’s more complicated than that, everything always is, but that’s the basic gist and wasn’t that fun little side trip…welcome to my brain, not even on drugs).

Hospice itself is a trip, especially if it’s one you’re ill-prepared to take, not when your husband’s doctors have tossed out words such as “battle!” and “curative” and “survive!” like candy at the Fight Cancer! parade, that you madly scramble for, hoard and hold tight to, because you’re in it o win it, this fucked-up game, you are strapped in for the long haul. When you watch as your husband is brutalized by not just cancer but barbaric curative treatments prescribed by the doctors you though were on your side, when you witness him survive the unsurvivable, time and again, you may be tricked into thinking he’s immortal—there’s no other option but to survive!, which makes suddenly shifting gears, from “cancer, you picked the wrong bitch!” to “whoah, wait a minute—after surviving all that, he’s still going to die?” a monumental effort, if you’re even able to. I sure as shit couldn’t do it.

Every day in hospice, for nearly five months, I’d bolt awake, gasping for air (did I ever sleep? I often wonder) with the thought, “Is this the day he’s going to die?” quickly followed by, “how will it happen?” and I’d start imagining all the ways it could play out, and those thought would stick to me, like a jagged shadow all day…there’s a price to pay, operating with a constant, electrifying undercurrent of terror running through your veins, there is no doubt. 

Yet, there was also a strange grace to hospice; typically, anything done in hospice is purely palliative in nature, meant to provide comfort and quality of life, not quantity, which if you think about that long enough, and I did, you may become highly suspect of the fight cancer ruse and become consumed by guilt that you went whole hog into the game, at his expense, not realizing you’d thrown yourself into the fire, too. 

When Bob’s oncologist finally called a cease-fire on the cancer treatments and sent him home to die, Bob’s 24/7 critical state quickly leveled out, exhibiting false evidence of recovery: his appetite returned, he gained weight (much of which was ungodly amounts of fluid dammed up in his body, one of many consequences of the inhumane surgery he was subjected to), his hair filled in so thick and curly, color stained his cheeks again. But, I’d read the hospice manual thoroughly, repeatedly—vigilance was now my default setting—and unwittingly, became a soothsayer of death. I could detect subtle, barely perceptible changes that told me he was not getting better, as his parents desperately wanted to believe, but in fact, was truly, slowly dying, right next to me. There’s a particular heaviness that comes with acquiring such a skill set, that becomes more a liability than a benefit, if not well-managed, though I don’t know how one could truly effectively manage witnessing watching your best friend die. The blog was the only way I had to diffuse the pressure that continually built up inside of me in this strange state, the only way I could dispel this strange knowledge I held.

A few weeks before Bob died—signs were becoming more pronounced, the inevitable was unmistakably close—I’d posted a long, rambling rant/diatribe/lament on the blog (that today, I’d unequivocally call a form of prayer), apologizing for not updating as frequently as I had been… we had moved into a space that felt so sacred and precious, I was fiercely protective of it and wanted nothing or no one to penetrate it or bastardize it in any way…being in hospice is an unfathomably disorienting space—even breathing takes on a new quality. We were here because my husband was actively dying, there was nothing anyone could say to me that would help or make me feel better; more than likely, it would only gravely offend. Nothing personal, it’s just where we were at; I couldn’t bear platitudes, well-wishes, or stories about someone’s 88 year old grandma whose hospice experience was so beautiful, I didn’t have the bandwidth for that, anymore.

April 11, 2011….I know I’ve been so sporadic in updating the blog in the past months and I apologize for that, after all, the whole intention of this blog, which goes back to ancient times, a year and a half ago, was to have a “go to place” to keep family and friends up to date and informed on Bob’s situation. But man, on this leg of the journey, it’s sofa king hard.

But, when it rains, it pours . . . I’m warning you, this blog entry might be a deluge of diarrhea of the keyboard, a whole lotta venting, too much “sharing,” a desperate act to get some shit out before I implode. Then again, maybe I’ll reel it all in, hit “delete” as I have too many times lately, and keep it to the bare minimum, because it’s a helluva lot easier, less confusing, less rambling, less everything.

Since Bob came home from the U in December, our whole perspective, our entire way of being has shifted, a complete 180 or something more complex, which makes it difficult to regularly post. Hospice has added a surreal dimension that I still can’t embrace, I just don’t get, probably never will. There’s nothing beautiful, precious or infinitely special about caring for my beloved 44 year old husband in hospice…he’s been dragged through hell repeatedly, fought so fucking hard, so much of his life left undone, each and every day of mine is spent watching him get through each and every day, with humbling, courageous strength, in spite of excruciating, debilitating pain and endless other issues . . .he never complains, that’s all I do is complain, it seems . . .to have gone through all he did, only to be told, this is how it ends? I have no words to describe what this feels like, but I feel like I need to try, for endless reasons.

This is the hardest job I’ve ever done, but it’s the best job I’ve ever had, a job I would never give up. Ever, ever, ever. His hospice nurse keeps telling me CNA’s can come out and help Bob with showers, meals, whatever I need, to give me a break, give me “respite” from my duties. I look at her like she’s nuts. Seriously. Would a CNA know how to give Bob a shower the way I know he likes it (or allow Rocco in on the fun and make the bathroom a sloppy wet mess that I’m always ecstatic to clean up because I so rarely get to hear him laugh anymore)? Would a CNA know how to change his surgery dressing and give him a relaxing little back massage afterward, like I do every time? Would a CNA kiss his feet every time they’d wrap his legs or put his compression stockings on, or apologize profusely and cry even, for causing any additional pain while wrapping his leg or wrestling to get the stockings on? Certainly a CNA wouldn’t climb into bed with him and wrap around him as tightly but gently as possible, to feel his breath, his heartbeat under her hand, the only thing that calms my own breathing these days? Would a CNA lie awake next to him, waiting for his sleep-sticky voice to call out to her, to help him to the bathroom? I think not. Thanks, but no thanks. It’s almost insulting to even suggest it—I mean, who will come in and give Bob a respite from the shit he deals with all day, every day? No one, that’s who. To suggest giving me a break is offensive beyond words.

It’s so hard, to try to define, to write about, put into words the simple, yet insanely complicated world we’re living in these days. Simple, in our daily activities, insanely complicated, the emotions entwined around those same activities. . . endless waves pummel us relentlessly, throughout the day, the multifarious nature of those waves . . . sticky, messy, intricate tangle of thoughts and actions and emotions we wade through, all day, every day . . . I am able to speak only selfishly, in a self-centered way, about myself and what I’m thinking and feeling; I would never be so bold or presumptuous, so arrogant, to speak for Bob; I so wish he could jump on and take over for a while, to speak for himself, but unfortunately, all you got is me.

I try to share what life is like here at Wrenwood, but wind up exasperated in my attempts and usually end up deleting everything I spewed forth and simply resort to reporting the daily mundane, sanitizing, sugar-coating with a cheerleader’s touch, which is a helluva lot easier than trying to delve into the deeper issues. . . but even reporting the mundane is misleading, at best. For instance, to say Bob’s having a “good” day is an insult to all he deals with on a constant basis, without reprieve. Everyone gets so excited to read that, but the reality is, he has mostly shockingly shitty days; once in a while, he has a day where the shit is infinitesimally less shitty for an infinitesimally shorter time; the bizarre, elusive alchemy of pain management might nudge in his favor for a blessed, short time—barely a blip on the screen—to see him savor that tiniest crumb of reprieve is excruciating, because I know it will not stay, it manages to slip away again, quickly. He never complains, which grips my heart deeply; all I can do is simply observe, try to translate as best I can, sanitize and make what I witness palatable for the masses.

Though things have stabilized, every day is so hard for Bob, every single day has been an exercise in torture, for a year and a half, and maybe I haven’t been as forthright about that as I should have been, articulating this truth. . . maybe because this has become our life for the past 18 months, it has become “normal” and “acceptable” to us, I’ve assumed those who read the blog do so hanging onto my every word, every detail, are adept at reading between the lines, that somehow, even if you’ve never been through something like this, my words make you instantly, wholly understand. I realize there’s no way I can do that, with my words. It didn’t occur to me to be even more blatantly, brutally honest and detailed about all Bob has to face, each and every day, because I think my heart knows the impossibility of that. I’m always taken aback when people act surprised or put out, when I say Bob’s not up for a visit or can’t return phone calls or e-mails, I feel deeply responsible for not being more clear in how fucking sick he really is.

Maybe it’s because I’ve spent endless hours recently, perusing Bob’s vast collection of photos in the past several weeks, which have been a bittersweet journey, mixed with harsh reminders, evidence of how achingly vibrant, strong and full of life Bob was just a mere eternity— a year and a half ago . . . maybe it’s that a few e-mails and phone calls I’ve recently received from friends and family, brought to my attention that I haven’t been clear enough in relaying just how sick Bob really is, that there is so much he simply cannot, will not ever be able to do, any more; it doesn’t matter how much you’d like something to happen when it simply can’t be done. . . maybe it was that so many people saw Bob at the benefit and caught him on a very rare good day (I believe in my heart, it was your energy that buoyed him that day—his spirit knew it would be the last time he would see most of you—and that knowledge, not a magical combination of opioids or anything else, is what sustained him that day), you saw him looking so good, so engaging, so gregarious, that you were mislead into believing he’s doing better than he really is. I’m not trying to be negative or a downer, I’m being realistic, which is not my usual state; anyone who knows me knows I tend toward dreamy more than reality. Maybe it’s all the thinking I do on the long walks with the dogs that gets things stirred up and boils to the surface, and needs an outlet, lest it kills me. . .

To be going through Bob’s vast photo collection lately as I have, is dredging up a lifetime long gone, a renewal of reminders of a beautiful life that has been so cruelly, violently, endlessly altered, 18 months and counting . . . he told me that seeing his photos is like a journal to him—all his senses light up, he can feel the ground as he lay in he grass taking that sunset phto, what the air was like on his face when that deer stopped in front of him, how the sun felt on his skin when shooting pasque flowers…to watch someone I love suffer so intensely, without a day’s reprieve, is some days, more than I can bear. I push past my own feelings of horror, fear and immense sadness—get over myself—and try to help Bob, be here for him, as best I can. I find myself stopping mid-sentence when I start to complain about a backache or waking up with a stiff neck, or a mild sore throat, because the instant the words leave my mouth, I realize who I’m talking to, and that’s enough for me to shut my f’n pie hole. . .

Some friends invited us on a camping trip at the end of April. It was so thoughtful to include us in their world—Bob’s old world of camping, hiking, kayaking—for the weekend, taking great care to tell me how they would accommodate for Bob, that the campsite is wheelchair accessible . . . another friend just asked us when we were going to visit them in Tennessee. Remember, if you will, so many months ago, when we were all talking about renting a Greyhound bus and heading down to Memphis for some real BBQ, once all this shit was done and behind us . . . “what would it take to get you guys down here?” our Tennessee friend asked me. The weight of such questions bear down so heavy, how can I even begin to answer them?

Pain is a constant, relentless bastard of a companion, always just around the corner, if not bearing down his back. The drugs he has to take to get relief turn him into a drooling zombie, picking invisible flies from the air…mobility is difficult for Bob—using a walker around the house is the only way he can get around, even then, it’s painstakingly slow, he can only travel a few feet with a walker, not much farther, he’s so weak; if he’s just taken his pain meds, I have to be extra vigilant that he doesn’t try to get up without me at his side . . . he needs my assistance with all his personal cares—showering, bathroom duties, getting dressed, in and out of bed. . . he wears a diaper, I have to cath him so he can pee, he can’t just get up and go to the kitchen to make himself a sandwich should the mood strikes (which is not much, these days). The best he can do, at rare times, is get up and slowly shuffle to the kitchen to fish out a popsicle from the freezer, that’s the extent of his independence these days. It’s so hard to write these words that feels so untrue about a man who, not that long ago, yet at the same time was he ever? so robust, so independent. But they are true, today.

He has an open, gaping gruesome wound on his back, a huge, ugly tumor protrudes from it. I see it every day, twice a day, when we do his dressing changes and wound care . . I’ve been watching the tumor changing, growing since his Bethesda days. . . both lower limbs are edemic, swollen to over twice their normal size with fluid, like thick, sodden sandbags that must add a good 25-30 extra pounds of weight to Bob’s normally feather-weight frame. . . heavy and cumbersome, it takes all of my strength to lift his legs onto the bed, or for him to heave them up the three steps to the bedroom, or down to the living room. I get so mad when he tries to get in or out of bed on his own, which he does, often . . . stubborn Polack (I‘m so bad at stereotyping, I don’t even know if Polacks are stubborn, just sounds like they would be. Maybe we’ve been watching too many All in the Family reruns . . .I fucking hate TV, btw, a mocking reminder of what our life has been reduced to)

All this and more, has been our “norm” for four months . . . almost daily, I vacillate between bartering with God or whomever is responsible for our being, that I would live like this forever, taking care of Bob like this, doing all this and more, if only he wouldn’t be taken from me. . . then, when I see how hard everything is for him, how much pain he’s in, even with copious amounts of opiates, how little quality of life he has, I know my pathetic plea is so selfish. . . last night, Bob said to me, once again, “I can’t do this much longer, Jen, it’s too hard, everything hurts too much…”

So, we’ve sold four sets of cards through our Etsy shop already, our first week in business! How cool is that?!? An abrupt change in topic, it seems, but there is a connection, if you choose to continue to follow me . . . so, my initial intention was this very lofty aspiration to use the proceeds of our store to help fund efforts to educate the public as well as the medical community about the late effects of childhood cancer treatments. . . that was my intention several months ago, when we first started kicking this idea around. . . as time has gone on and as I’ve thought long and hard about that commendable ideal, our experience (which includes countless encounters and conversations with doctors upon doctors along the way) along this journey in life has convinced me that the “war on cancer” is a farce. . . preventive medicine is a joke . . . cancer is too profitable for anyone/any institution in the medical community to really be serious about finding a “cure. . .”

We’ve been told, by several doctors on this long, living nightmare, that treatments for Hodgkin’s back in 1970 (when Bob was treated for his first cancer) haven’t changed much today. Which means that the long-term effects that Bob is dealing with now are a stark, very real possibility for newly diagnosed Hodgkin’s patients. We met with the long term follow-up clinic at the U several weeks ago, and were told by their “cancer survivor” specialty doctors, the same thing. . . I attended a “Cancer Survivorship” conference at the U last spring, with Penny and my mom, and sat in near horror, listening to doctors and researchers and scientists tell the audience that, when long term followup studies were started on cancer survivors, back in the 70s, they started seeing adverse effects of cancer treatments almost immediately; not years later, but a few short years after treatment. . .

Look up Hodgkin’s survivors on the internet. . . you’ll find endless chat rooms, message boards, websites, personal blogs devoted to discussing the late-effects survivors are dealing with. Not random anomalies. No, these are countless, endless, common stories. . . cure cancer, my ass.

Last year, Bob’s insurance company ponied up over two million dollars in payments to the U for his cancer “treatments;” that’s about the point I stopped keeping track, I was so horrified—everyone’s in on the this money-making scheme. Chemo, endless hospital stays, endless ER trips, literally months spent in hospital rooms at the U, enduring a horrific, disfiguring, debilitating 13-hour “curative” surgery. A “curative” surgery that resulted in horrifically disfiguring and disabling my husband, and still, the cancer returned. I watched the tumor grow, as Bob “rehabbed” at Bethesda, just a few short weeks after the “curative” surgery—after we were told that all margins of removed bone had tested “cancer free.” Fuck cancer. Fuck treatments, fuck the entire medical community and their for-profit, anti-preventive focus. Fuck, fuck, fuck…

So where does that leave us? Where does that put my lofty aspirations of sharing Bob’s photography with the world and saving it, in the process? I’m thinking I need to change my focus, bring it closer to home, closer to my heart, to our experience, to our world, to honor all of you who have been so near and dear (even if you haven’t been able to physically be near us) . . . one of the things that I’ve been beyond grateful for, in the midst of this neverending nightmare, is that, when the time came to be, I was able to quit my job to become Bob’s full-time caretaker. For better or worse, personified in me. . . we were able to do it for a long time on our own scrimping and savings, but there came a time when the shit hit the fan, when push came to shove, that we realized this battle was wasn’t going to end when I demanded it should end—that’s when our friends, family, strangers stretched out the net and caught us, carried us . . . you are still carrying us, and the enormity of that thought catches my breath, every time…how does a person express gratitude for such an act…thank you seems horribly inadequate, but it’s all I have…

So, the latest incarnation of my lofty aspiration to try to make some sense, some purpose, some meaning behind this Krazy Karival Ryde is to maybe use the proceeds of the photography sales to start a caregiver’s fund. . . to help a family in need . . . to help others organize a kick-ass benefit event, to provide financial guidance, budget advice . . . or, fuck it all to hell . . maybe we’ll take the benefit money and head to a remote island in the Pacific . . .fuck, I’m so sorry, everyone, this is so hard, everything hurts too much…

As I mentioned, the overwhelming majority of those who followed my blog were ardent, passionate supporters, often left speechless when they’d read all that Bob was going through. Still, simply knowing that people were reading my words, and holding us in their hearts brought more comfort than I could have ever imagined possible. Occasionally, however, someone, usually someone who didn’t know me well, would read my blog and feel compelled to set me and my thoughts on the straight and narrow, usually in a private oh-so-Minnesotan passive aggressive message. I’m having a hard time coming up with thanks for those people, I’m gonna need a little more time…

So, ten pages later, back to the email I re-encountered yesterday, while scrounging around  my old desktop computer for another document…finding it sent me down another rabbit hole, to see if I still had the original letter from the neighbor, who sparked my response in the first place…remember, I’m a hoarder of words, anything you’ve written to me say to me can and will be used against you…I found it, in a box in the basement. The letter was from a neighbor, who had been following my blog: (dated the same day as my blog entry, she wasted no time in telling me what’s what): 

April 11, 2011:

Dear Bob & Jen,

Jen from reading your blog, I suspect you will probably be angry at what I have to say, but I couldn’t live with myself if I didn’t say it. 

I just want to share with you that God, the creator of heaven and earth, loves you. He not only made heaven and earth and all that is in it, but He created you and that is why he loves you. He showed this great love for each of us by coming to earth in the form of Jesus Chris, suffering a horrible death on the cross and shedding his blood to cover our sins. He offers us eternal life if we believe in Him. All we have to do is tell Him we believe He died for our sins, ask Him to forgive us our sins and accept His gift of forgiveness and eternal life in heaven. 

If down the road you want more information or want to talk about it, please call me.

I hope you accept this in the same way it is offered, with love. 

Carol

This letter also came with a check—fifty, maybe hundred bucks. Generosity with strings. 

My response to Carol (name has been changed to protect the guilty): 

Carol,

Please take your money and go buy yourself a clue. Your words were not meant “in love,” they are a mean-spirited, insensitive, arrogant and self-righteous attempt (thinly disguised behind your “Christian” veil), to try and put me in my place, to tell me how to think, feel and act in the heart of a horrific life event.

It was not only out of line and completely uncalled for, but shows a blatant disregard and disrespect for what Bob and I have gone through and continue to go through.

If the only thing you have gleaned from blog and from Bob’s experience of the past 18 months is my anger, and that it’s your “job” to save us, then you have missed the point entirely. My advice to you is to quite reading it, because it’s clear you will never get it. 

Jennifer

I took my letter and her check, stuffed them into an envelope, marched down our country road to her house about 1/2 mile away, and shoved it in her mailbox. I went back home to care for my husband, who died three weeks later. What neither Carol nor even I could see at the time, was that every word of my blog, in its deeply messy, rambling, angry, loving, heartbroken essence, was indeed, a prayer, and it was enough.