This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
I had a dream last night about the hospital bed that my dad was in when he died. Actually maybe it wasn't that bed; maybe it was just a generic hospital bed. Oddly, nothing was going on in the dream; it was more like a still photograph than it was like a movie - there were no characters and there was no plot or script.
But that started me thinking about hospital beds and the one that ended up being the last bed my dad ever slept in before he went on ahead. I think that most people, including me prior to the end of my dad's illness, consider a hospital bed to be a white flag of sorts, a surrender of lots of things, the most obvious of which is one's independence. The day that the hospital bed was delivered and set up in my parents' house, though, in preparation for my dad's being able to come home from the hospital so that he could spend his last days in a more familiar, more comfortable setting, that bed represented so many other things for my family; it was obviously a consolation of sorts, but one that brought with it the power to give Dad what he so desperately wanted and to release him from the jaws of the downward spiral of pain and anxiety that just kept getting worse in the awful environment of the hospital.
The bed itself seemed alarmingly flimsy, I thought, insubstantial but sadly adequate to hold my dad's then-frail body. The frame seemed almost like it was made of wire that was wound together, fabricated without regard to aesthetics, as far as possible from a piece of furniture that would otherwise have been allowed in my parents' house and just sturdy enough to get the job done. Its defining feature was a rickey little hand crank at the foot of the bed that could be used to adjust the head of the bed up or down. It was a shitty little crank, really, and thinking back to the cheapness of it makes me both sad and mad - sad for our situation and for the way we had to handle every damn detail in the whole chaotic situation ourselves except for a little help from the hospice company at the very end, and mad for the shittiness of the crank itself: for god's sake, couldn't the insurance company drum up a few bucks more to send us a bed with an electric crank? Wasn't the situation itself torturous enough without one of us having to use such a rudimentary apparatus, like it was the 1950's or something?
But we were grateful for the bed with the old-timey crank; we were grateful that hospice had arranged to have it delivered, and we were as grateful as we could be that we were able to arrange for Dad to come home as he had been urgently requesting, actually begging, from his higher-tech bed in the hospital.
I only vaguely remember the scene of when the guy from the medical supply company came to pick up the bed when Dad was done with it; in fact, I don't even remember if there was only one guy that came or if there were two. I remember thinking, once they had taken it away, that my parents' bedroom suddenly seemed heartbreakingly empty, even though the hospital bed had only been in there for less than a week and even though my husband and my brother-in-law had moved my parents' king-sized bed back over to the center of that part of the room as it had been before we'd had the hospital bed set up beside it; things we set up like they had been before, but nothing was as it had been. I remember standing in the space where the hospital bed had just been just minutes before, with tears running down my face, looking down and noticing that there weren't any indentions from the wheels of the bed left in the carpet and wondering how in the world a visible mark hadn't been left where something so big had happened.
Today is the 5th of the month, and, as on this day every month over the last 25 months, that date results in an exacerbation of grief for me, because it is the day of the month that my dad went on ahead.
I wonder if the 5th of the month ever won't be like this, if it will ever just flow by like the rest of the days on the calendar, and I wonder if it will hurt even more when the realization hits me that it has somehow slipped by unnoticed.
From the moment I opened my eyes this morning, I felt the grief a little heavier, like a blanket that's too thick for the temperature in the room. I plodded through the morning routine and made it out the door on time, but then, on my drive to work, I saw a car exactly like my dad's, an army green Mini-Cooper with a customized bike rack on the top.
In an instant, tears filled my eyes. I felt like I'd been punched in the gut but weirdly also a little bit comforted; feeling that it was a sign from my dad, I felt both like I'd gained something in experiencing that connection with him and like I'd suffered a loss again with the thought that the only contact I can ever have with him is transcendent.
The unpredictability of grief is something that gets to me time and time again. I like patterns and predictability; I don't like surprises or disorder. All along I've felt like I wanted, or actually needed, to know - how will this go?What's the plan?How long will it last?When will I feel like I have a grip on this grief, if ever?
In the beginning, I told myself I could take it, if I only had an idea of how long it would go on. And if I had some kind of rules or guidelines for getting through it. When I realized there was none of that type of knowledge or information to be had, I found that pretty much all I could do was to cry. We all cried, to each other and alone. We worried about each other and we worried about ourselves; we wondered if this was how things would always be, and we wondered if we would survive the hardest thing that any of us had ever gone through.
So far I've just been muddling through it. And the change - and the order to it and the flow of it - that I've started to notice, one that has come about at some imperceptible point in time, is that I have started to be able to reflect on the road I had traveled, to see some ribbon of road behind me as I glance in the rearview mirror, even as I have continued to trek along the same route, and I have started to see some differences in myself and in my grief ... not "progress," really, but observations about the path I have traveled as part of this process.
Maybe it's just familiarity with grief, almost a relaxed intimacy like a couple who has been together for awhile or like shoes that are worn in but not worn out. Certainly part of it is a realization that there is no standard of excellence in this process, just getting through it, hopefully intact.
"I pick up a stone that I cast to the sky, hoping for some kind of sign."
I can smile most of the time these days when I see a photo of my dad, and I can usually talk about him without the extreme sadness and devastation that used to bubble right up to the surface so quickly. I can laugh at some of the inside jokes that he and I shared, even though I realize that I'm the only one left on the inside of those now; I can usually think about something that he should be here to experience or to participate in now and not fall apart. I can go to sleep most nights without feeling like I need to beg into the dark for a good dream about him. Much of the difficulty is still there, though; I think I've just gotten more adept at managing it.
I used to be a lot more inflexible - maybe even close-minded or harsh - in my views about certain things before my dad got sick. I must admit: I did the same thing about certain things before I had children of my own; I thought I had at least some of the answers, and then reality hit me and I realized that I didn't. I spent a lot more time with the "my way or the highway" type of thinking going on in my head than I do now.
There's a certain amount of perspective that growing up gives to a person - some of it good, some maybe more realistic than good, but nonetheless having our views changed over time is just part of life. It's almost kind of metaphysical the way perception can be divided up over the course of a lifetime: either you think you know, or you know you don't know.
But then comes grief, and that's a game changer on an entirely different level. I think for most people, grief softens the edges of what we worry about, of our priorities, and maybe even of our philosophy about things. For me, going through the trial of my dad's illness and living with the grief that has come from his death has also blurred lots of things. I'm less sure about certain things - many of which I have written about and will continue to write about - and that can be stressful, confusing, and exhausting. But one thing that I think has actually been a change for the better in this process is the mitigation of my tendency to cast judgment on others in general; not only have my views on some things softened, but I guess so have I.
Here's what I know for sure about grief: there is no "right way" to get through it. Each person brings a different set of circumstances, different coping skills, and different needs to the situation. We may share some of the same emotions and sometimes even thought patterns as we travel down the road, but, as we are all unique individuals, so is the exact nature of our mourning and our grief.
In the weeks and months after my dad went on ahead, my first instinct was to isolate myself. I'm not sure why, exactly; there are probably a whole host of reasons that went into that propensity.
With the encouragement of my family, though, I tried to get out and do things socially, although, truth be told, I didn't really feel like leaving the house most of the time.
Through phone calls and sporadic visits between the different places where we lived, my siblings and my mom and I all stuck together as much as we could, but at the same time we all did different things to keep ourselves together in the midst of the grief, to ward off the grief, to get through the days that were so much tougher to get through than I'd imagined. Wait a minute, scratch that: I actually never even took the time to imagine what life would be like without Dad, until we were without him. I guess that, like Dad used to say about worrying being a waste of time, I felt that punching through the unbelieveability to picture the sadness, the absurdity of that life, even when he was so sick, was just too far out there to be a reasonable use of time for me - it would be like me thinking about jumping on the space shuttle and going to the moon right now.
I recently looked back at something I wrote very early in my grief, a jotted-down Q and A with myself. I wrote, "How can I get through this, how can I go on, what can I do? I will probably end up sleeping too much, drinking too much, not eating enough, walking around in a stony silence, and I hate all of those ideas." For better or for worse, I actually missed the mark on all of those things. A lot of time at work and around town, I felt like a fraud, as if nothing out of the ordinary had happened, as if I were the same. I felt lost, but I knew where I was and I knew I didn't want to accept it. I didn't know where to even begin trying to figure out how to live without my dad or how to live with the sorrow.
In the immediate aftermath, my mother, of course, was the one still at the house where Dad was supposed to be with her, with the most dramatic life change, and she was the one that we worried about the most. Her form of coping initially seemed to come in the form of trying to re-organize her house; it was as if she was trying to gain some of the control that had been lost the moment we heard Dad's diagnosis. In my corner of the world, I made a list of the things that angered me, in an effort to keep from exploding in my fury, and of questions to which I knew there were no answers. I tried different things, many of which I've written about since. One of these was my longtime balance: running, which failed me in that role; for the first time ever, running didn't feel right to me. It wasn't physically therapeutic and it wasn't emotionally therapeutic; it felt more like I was trying to chase down the answers to an interminable stream of runaway questions. It hurt, something I was used to and was well experienced in in the physical sense, but the pangs of emotions that flooded my mind and my body on these runs were difficult to bear. After awhile, I gave up on it, and only recently have I begun to try it again, intermittently, as it seems like the flow of the grief and the things that come along with it allow.
Have you ever run into someone whom you haven't seen in awhile and noticed that something about that person that you can't put your finger on has changed? Maybe it was something so indistinguishable, so subtle, that you have even wondered if it was just your imagination, but still you felt that something was different about that person than it was in the past. That's what grief feels like for me at this point. It has changed over the course of the two years since my dad died, but it's hard to say exactly how. Or maybe I have changed in how I address the grief and in how I cope. One thing is for sure, though: it's still looming; it's not any less of a threat except for the fact that I guess I have learned a little bit about how to manage it. Part of me is shocked and even a little bit impressed (surprised?) that we've made it to the two year point after my dad went on ahead. We've done it; we've helped each other through it and we've survived it, so far. Some days, though, it feels like running the third lap of a four-lap mile around the track, which for me was always the most painful because I knew that I had to give it my all in that part of the race but I was also aware that there was so much work left to be done even after that lap had been completed. Part of me is so shocked and so saddened by that fact that we're already at the two-year mark that just the thought that it has been that long since I've seen him immediately brings tears to my eyes. Two years.How did that happen?
I had a dream about my dad a couple of nights ago, and in it he was sick and he kept asking me, "How did we get here?" At first, I thought he meant that he wanted to know how we had arrived in the physical location where we were, which was, oddly, sitting on a bench in a park that was not familiar to me (and certainly it wasn't somewhere that I went with him while he was sick), but then it dawned on me that he was asking how we had gotten to that exact point in time. And then in the dream I turned to him on the bench with tears in my eyes and I said, "We got here because of your strength, your courage, your toughness, your determination, and your love, and we will never forget that." I knew he want to know how he had gotten cancer and how it had gotten so bad so quickly, but no one knew the answers to those questions. What I did know in the dream - what I wanted to convey to him - and what I do know in real life is that my dad is the reason that my family and I have had the fortitude not to crumble in the midst of the biggest challenge of our lives; time and time again, we have held him up as an example of how to face the pain of our grief, how to cope with the sadness and the anger that threaten to overtake the joy and the promise of hope for a better tomorrow, and how to look for the good on even the roughest of days. That's how we have gotten here; that's how we've made it through these two years since he had to go on ahead.
But of course knowing that doesn't make me miss him any less; if anything, the passage of time makes me miss him more! It's not just that today marks the two year anniversary of my dad's death that brings him to mind; I miss him all the time. I miss how he and I could laugh over the craziest things, sometimes things we knew were ridiculous or even dumb but we thought they were funny anyway.
About ten years ago, Dad and I drove from my house to the small town in Alabama where my grandmother lived to pick her up and bring her back to my house so she wouldn't be alone on Christmas. It was about a 7-hour long drive each way, and we had a great time talking and laughing along the way, just the two of us on the way there and then with Grandmom on the way back. At one point en route to her house, we stopped at a gas station that happened to be in a rough neighborhood; we both got a big fountain drink inside the convenience store and then got back into the car. As Dad pulled out of the parking lot and turned onto the street, we heard a loud ricocheting type of noise on the back window of the car. Each of us instinctively ducked our head as Dad quickly pulled the car over onto the side of the road so we could see what had made the noise; we both thought we had been caught in a crossfire that had shattered the glass on the back window. When we'd had a few seconds to process things, though, we realized that the sound had come from the ice from the drinks that had spilled as we'd turned the corner after both of us had set our cups on the roof and had forgotten them there as we got back in the car. A good laugh ensued, and we headed out onto the road again.
I miss the inside jokes and the memories we shared from running together. One thing we used to talk about in that vein was our strategy of "rounding up" our run time ("If you say you'll be out running for 40-45 minutes, you can go for almost an hour before anybody notices," Dad had advised me many times throughout the years when I complained about not having as much time as I liked to have to run. Prior to the time when he began training for the Ironman triathlon, his fitness goal from age 55-65 was to work out for an hour a day, at least 5 days per week.)
I miss the exuberant way he marked his place in books, by folding half of the page down. I was reminded of this just a couple of weeks ago when I was going through some books to see which ones could be donated to charity and I came across a book that he had handed down to me a few years ago, complete with folded down pages marking the places where he had taken a break from reading along the way.
I miss the way he took joy in everyday tasks and, in doing so, he made them fun for those around him. This included lots of things he did to entertain me on long runs - things like singing as he ran and alternately bounced and caught a tennis ball to the beat of a song, like taking me on different running routes that he had scouted out in advance to make each one an adventure, and like coming up with unusual training techniques for the two of us like running up and down the steps on the outside of a grain storage bin for a certain amount of time (which he then challenged me to try to improve on when we did it again the next week).
We ran up and down steps like these as one of our training routines.
There were lots of non-running tasks that Dad made fun, too, though. One thing I was thinking about recently was what he called "Laundry Parties." When I was a teenager, Dad, as the person in our house who did most of the laundry, had trouble discerning whose clothes were whose between my mom's, my sisters', and mine, and so he often brought laundry baskets full of clean clothes into the den, dumped them on the couch, and announced to my sisters and me that we had to help fold them. "It'll be fun!" he'd say. "It's a Laundry Party!" and, although we usually groaned and complained about having to help, he always joked around and made a usually boring task fun.
I miss the way he hugged, which was often more back patting than anything else. Somehow his technique always seemed to instill confidence in me, as if the back-patting was literally him patting me on the back to let me know he thought I'd done something right.
I miss the funny random emails and phone calls from him, sometimes about something so out of the blue that just his question or comment made me laugh out loud. Once he called to ask me how to spell "coulotte" (pronounced "coo-lot" - this is a style of women's pants also known as a split skirt, in case you didn't know). I spelled it for him, he thanked me, and then, obviously in the middle of a thought, he hung up. I had to ask him later why he needed to know: he had been writing a memo to employees in his office about what was and what wasn't acceptable attire for Casual Fridays.
I miss the funny rules he made up for some things, like "I never drink beer that I can see through," a rule he imposed several years back when he discovered that he had a penchant for dark beer, despite the fact that he had been drinking lite beer for decades before that.
I miss the smell of Brut on him, so much that I sometimes break out a bottle of it that I have stashed in my bathroom just to take a whiff of it. It's comforting in that context; it's disturbing and sad when I smell it on someone else in passing, as if that intrudes on the comfort of it in my memories from when he wore it.
I miss the way he bounced on the balls of his feet when he walked. I miss his competitiveness, which he carried on with himself as much as anyone else, and I miss his pride. I miss the way he could (and usually did) talk to anyone who crossed his path.
I miss the way he lost certain things, like his wallet, so often that he tended not to worry about it whenever he did; like he did with a lot of other things, he didn't worry because he thought worrying was a waste of time and he just believed that everything would be ok.
I miss having him ask me about my job and how things were with my husband and the kids; I really miss how he used to listen to what I said in response and then how he would sometimes sigh as if he felt exhausted onmybehalf and then say, "I don't know how you do it all!" with so much pride and admiration in his voice that it soothed me and made me proud, even when I'd felt like I had been struggling before then.
I miss his no-nonsense attitude and advice, the same kind he gave me when I called to tell him that I'd been offered my first job as an occupational therapist after I'd graduated from college. I told him what the salary would be and that I thought it would be a great place to gain experience, and then I said that I had told the human resources department that I would get back to them about my decision. Without missing a beat, he said, "Haven't you been wanting to work at a children's hospital like that for many years?" I told him that I had, and he said, "Well, then, what are you waiting for?" was the advice I got in return, in response to which I hung up with him and made the call to accept the job.
I don't think Dad always recognized the value that other people found in the advice that he gave out, though. Late one night when he was in rehab and he, as usual, couldn't sleep, we were talking about the schedule for the next day and I reminded him that I was leaving to drive back home as soon as my mom got back to stay with him the next morning. "Be really careful driving back," he told me, and then he said, "Be sure not to stop for gas in the valley on the way back; it could be dangerous there and cell phone coverage isn't good." He paused and added, "But I'm sure you can take care of yourself." Before I could say anything in response, he commented, "Sometimes I worry that any advice I've given you hasn't been about the important things." "What do you mean, Dad?" I asked him. "You've given us good advice!" to which he responded, "All I can remember telling you is stuff like always keep a towel in the trunk of your car and put some toilet paper in the waistband of your shorts when you go for a run in the woods." It was true; he had told me both of those things many times throughout my life, and, truth be told, I always did both of them (and still do). But, of course, that wasn't the bulk of the advice he had given to me over the years, and I wanted to be sure he realized that. "You've taught me a lot more than that," I told him, but the only answer I got was the sound of his rhythmic snoring. After tossing and turning and chatting for the majority of the night, he had, at last, fallen asleep.
I miss the lists of "suggestions" he emailed to us before his birthday, Father's Day, and Christmas. To me, he was always the easiest person to buy a gift for, not just because of the list but because he had such distinct hobbies and because he would often just "make do" with whatever he already had instead of buying the latest and greatest accessories and gadgets for himself, leaving it open for us to give those things to him later if we wanted. Once when we were running together during the time that I was preparing for a marathon, I told him that I had gotten some new gear to help me with the training and that I had estimated that I had several hundred dollars of equipment on me every time I went out the door to run. He actually stopped in the road and said, "Are you serious?" Yes, I told him, but that included my high-tech clothes, my shoes, my GPS-enabled watch, my heart-rate monitor, my sunglasses, and my iPod. "That's crazy!" he said, incredulous. He started running again but insisted that we go back by the house so that I could "ditch the extras." "That way we can really run just to run," he said. And that's what we did. How I miss being able to do that with him, and to talk about anything or nothing along the way. Damn.
In a recent dream I had, someone said to me that I have dark humor.In the dream, my response was that it isn’t humor.
“Touche’, Dream Self, and how astute,” I thought when I woke up and remembered that part of the dream. In actuality, I do feel dark, angry, and ripped off.
Sometimes I feel like I am I the only one out there who is as angry as I am, about suffering such loss, about stupid Cancer, about unfairness, about what is even though nothing about it is right. I'm having a hard time coming up with any gratitude about my dad's passing or any peace about my dad flying around in the clouds with the angels now that he's gone; I just want him back, healthy. Even though I'm glad he isn't suffering anymore, really, I know that saying that is just a bargaining chip, and the deal we ended up with isn't nearly the one we should have gotten. I don’t buy the idea that he is in a better place, somewhere that we should be glad that he got to go when he did. I get that some people believe that and I guess that’s bully for them if that brings them peace. It’s not ok with me, though, that my dad was taken so early from this Earth, from this family, from this life where he was still meant to be. It sucks, and even saying that seems like an extreme understatement.
Sorry - but I can't see how something like this does SHIT to help anyone else.
Sometimes when I hear about this or that week or month that’s been designated for some kind of cancer awareness, it pisses me off.A lot.Who in THE HELL isn’t AWARE of CANCER??So, ok, maybe we all need to have our moles checked more often and be reminded that we should wear sunscreen and not smoke, but, other than that, I think we’ve got AWARENESS covered.What I’ve had to become AWARE of since my dad got sick has been equally as devastating as the fact that there is Cancer in the world.Here are the fine points of this Awareness and the Darkness: People you love will get sick or hurt and will die. Some people will get cancer and some won’t; some of those who get it will survive and some won’t, and the determining force between the will and won’t in all of this is a crapshoot. Healthy habits, good deeds, karmic credit, income level, family support, positive attitude, level of education, insurance coverage, prayer, bargaining – it is quite likely that none of this will make any difference at all in whether or not a person survives.Some of the people who get cancer and some who die will be way too young.Some of the people you care about will suffer, some maybe even a lot.In some cases when you are hanging onto the end of your rope by the skin of your teeth, trying to cope with illness and grief, some people won’t care. Some won't notice. They will go on about their lives as usual.At some point in life, each of us will be brought to our knees in grief, and then, even though the layers of sadness and anger will continue to peel away, there will always be a feeling of rawness for which there is no effective salve.
I freaking hate that I am aware of those things now. I hate it when people hear about someone who has gotten very ill or who has passed away and say, “But I just saw her yesterday!” or “I was just thinking about him this morning!” As if that is some kind of an insurance policy or a shield that can keep bad things from happening! I hate that I know that there really is no protection from suffering and death and that I am aware that we are all just one phone call away from our knees. I detest having the awareness that it’s really inaccurate when someone says a person’s death was “unexpected” or "untimely." I hate that I know statistics about brain cancer and that I am aware of how different it is from other kinds of cancer, even if those cancers have spread to the brain. Sometimes I even feel guilty about the people who have gotten a brain cancer diagnosis since my dad did because we weren’t able to help my dad beat those stupid odds; I really thought we would and that we would then be in a position to offer Hope to others in the future.
I hate that I know what tumor fever and mottling are and what happens to a human body as it starts to shut down, no matter how healthy it was just a short time ago. I hate that I will always have to wonder if the treatment we chose for Dad was what made him sicker than the cancer was making him at that point.I hate that I feel like I have to just be grateful for certain things instead of being angry and wanting more.
As in my dad’s case, for many cancer patients and their families, at some point in their treatment, the big question becomes not “What will result in a cure?” or not even “What treatment will allow for life to continue the longest?” but rather “Which treatment is the least likely to do harm?” I hate that I know first-hand that sometimes the best option may be no treatment, even though that feels like throwing in the towel. I hate that I am aware that not even the doctors or the researchers know what the best treatment is for many diseases like cancer and thus they leave treatment decisions to the patient and/or his family.Really?That’s like handing someone a loaded weapon and telling them you’re not sure if it will work as intended, end up being useless as it fails to function, misfire, or just explode in their hands randomly, but at the same time telling them that if they don't man-up and use the weapon to try to protect themselves in spite of the risks, they will surely die anyway. I don't think it technically counts as rolling the dice if there isn't an option of not rolling at all.
When I first heard the "NEGU" (Never Ever Give Up) creed that is going around in cancer circles, it infuriated me because I felt that it was implying that treatment for cancer should never be stopped and that if it was, the patient and/or his family were wimping out. Lately, though, I am realizing that what happens is that our awareness - our perspective - about what "giving up" is changes as we are being forced to watch our loved one suffer and as we begin to bargain for lack of having the power to do anything else. We start to see the continuation of aggressive treatment as something bad and start to look at the cessation of such treatment as fighting and as letting go as we prepare for what comes next as being strong. That isn't right, to have that awareness or to be forced to make ourselves think that way when what we really want to do is ball up in a corner and cry or kick someone's ass. That type of awareness is like smelling rotten kitchen trash; before you experience it first-hand, you think it sounds horrible, but, once you're actually in the midst of it, you realize it's even worse than you ever thought it could be.
When I look back at the couple of days that my family had to find and choose an oncologist for my dad, while we were trying to take care of him post-brain surgery and while we were reeling from the shock of the news of the diagnosis, part of me knows that we did the best we could do at the time, but part of me wonders why we didn’t find a way to interview more than one doctor for the job. I wanted an oncologist who was brilliant about more than just cancer cell replication and chemotherapy, one who never failed to answer our questions, one who cited studies and considered and discussed with us all of the possible options. Of course, I wanted one who was capable of saving my dad, but, failing that, I wanted one who took each of our concerns seriously and saw the urgency in everything that needed to be taken care of, one with enough steely competence and compassion to take care of my dad, even if the treatments available couldn’t save my dad’s life.
I really thought our guy had all of those qualities, but I guess like a lot of things in life, that is something that cannot really be determined until it’s too late to change course.
I realize the primary objective of an oncologist is to cure cancer, and, then, second to that, to treat it. But what about after that, what about treating and caring for the whole person? Or even – best case scenario – caring for the whole family? Where is that in all of this Cancer shit?
Really none of those things ended up happening in our case, and I am left with such confusion and extreme disappointment in the medical team as a whole, not just because of the outcome, but because of the things that happened or didn’t happen in the process. My mind sometimes flashes back to the scene from when my mom, my sisters, and I sat down with the oncologist in Dad’s hospital room, with him in a drugged sleep in the bed in the middle of us, and discussed stopping treatment. I can still picture the doctor, with tears in his eyes and such a genuine look of compassion on his face, as he told us that we were making the right choice to take Dad home on hospice and then that, although he wouldn’t continue to “officially” be Dad’s doctor (a hospice patient is typically transferred over to the service of a physician associated with the hospice agency), he would call the following Monday to check on Dad and on us.
At the time, I felt like he was totally on our side, and that felt almost as right as the decision to sign on with hospice did to me.But later, when he didn’t call us to check in, not that Monday, not EVER, I am left to wonder if my impression of him and my memory of the compassionate expression on his face that day were all as inaccurate as my belief that Dad would beat brain cancer were.
And therein lies an example of the darkness that still surrounds me: the haze of the confusion about what really happened, the memories of my family as we clamored around in vain to try to find something that would get Dad better, and, of course, the questions that as far as I can tell will always remain unanswered: things like - Why did Dad have almost no symptoms at all until he was so stricken by the cancer and later by the infection in his body? Why didn’t he ever get any better atall, despite the surgery, the rehab stay, and the treatment he endured (and despite what all those “expert” doctors said)? What caused his immunity to drop so low and him to get so sick that he couldn’t recover? Why did he die when the scans showed improvement? Why did the oncologist not see how he wasn’t getting better? Why were we only presented with some of the treatment options, beginning with the brain surgery that didn’t help him at all and ending with the offers for treatment plans that were totally unrealistic when he was so sick that he couldn't lift his head from the pillow in his hospital bed?
And of course, the mainstay: How (why) did he get brain cancer in the first place?
There again is the darkness, that which threatens to pull me downward in the blink of an eye. There again is the fierce fury that feels so fresh and even more intense than the day my dad died, the rage that makes me want to rip someone's throat out except for the awful awareness that I have that doing so (or doing anything else, for that matter) won't help a damn bit. The only thing that keeps me afloat is something else of which I have also only recently become aware: I have a secret weapon - the perspective that Dad left us with, the one that helps me keep some faith in the human spirit and that allows me to hope that this grief won’t always hurt this much, the one that allows me at this point and even with all of this baggage to believe that even if it does that I am strong enough to withstand it.
"You will lose someone you can't live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn't seal back up. And you come through. It's like having a broken leg that never heals perfectly - that still hurts when the weather gets cold, but you learn to dance with the limp." ~Anne Lamott
Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family; it took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time.It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m.– there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.
Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.” Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.
On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted. My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.
I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone. As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.
I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip. Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all. Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.
I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day. I quickly hugged my mom and then went into my parents’ bedroom. I saw my dad lying in the hospital bed – it looked like him, but it didn’t. I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room. A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.”I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.
I couldn’t really believe it, but here we were. Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it. That we had gotten here this fast, or at all. That we weren’t going to be the ones to beat the odds. As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital: “It’s just too much.” He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much. What was happening was too much, and so was the grief, already. Unimaginable, even in the moment. All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing. Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on. For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.
Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning.Our brother Lee, who lived 800 miles away, planned to fly in the day after that.
Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties. She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting. She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did. While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?” I think I meant for Dad, but maybe I meant just in general. I felt restless and so completely useless. For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him.You have to tell him he can leave when he needs to.” Oh, god, how I didn’t want to hear those words, but I knew she was right. I tried to steel myself for what I knew had to be done and what I knew was going to happen.
A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on. Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before. “It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands. A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared. Dad said he was so scared that he was going to be “counted with an odd number.” He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.
Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost. I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family. I carefully put my head on his shoulder, and I said, “You can go. But you have to come back to me!” Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion. Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying. “Oh, Dad,” I cried, “I know your body can’t do it anymore. I know you are doing everything you can to stay here with us, but it’s ok if you can’t. You’ve finished the race; you’ve done everything you needed to do, and we will be ok.” He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too. I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.
Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me.Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life.Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true.It didn’t seem possible, or real.
But it was real, and time was marching on. The night-shift nurse came to replace Marilyn. As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep. It felt odd yet also comforting to have the night nurse watching over us. Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing. I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all. It was the air, breathing, and being together with those we love that were paramount. I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.
When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and undefended. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness.But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.
