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Caregivers' Guide for Bone Marrow/Stem Cell Transplant
Practical Perspectives

One Patient's Patient Caregiver

A Patient's Perspective
by Macklin Smith

It's not easy to remember what it was like coming home from the hospital, settling into the chimerical routine of lethargy and sharp emotions, bad sleep and listlessness, anxiety and hope. Not only was my brain befuddled by the chemotherapy, but the anti-nausea drug Ativan, I later found out, was also an amnesiac. Trying to remember how I related at that time to my caregiver, my wife Lynette, is an iffy prospect. She remembers events and circumstances much better than I do, but of course only I can remember—-or try to remember—-what it was like being me as a patient.

I know I was grateful to have gotten out of the hospital and back home. I was hopeful that I might actually make it. I was dutifully obsessed with all the details of medication, sanitation, and gestation that were required if I were to continue on as a really slowly recovering cancer patient. I also know I was utterly relieved to be back with my wife in our own familiar environment. I remember being happy to see our dog Sadie again, even though I wasn’t sure she recognized me right away, and even though I was worried about petting her. Our house, I remember, smelled very clean, almost antiseptic, no, actually antiseptic, and there were things missing—-ah, all the plants were gone! I remember suddenly staring into space and needing to lie down on the nearby couch.

I couldn't do much on my own. Sometimes I felt I could do hardly anything on my own, and I resented the fact that Lynette, my dear wife and loving caregiver, was telling me what to do and why to do it. To eat, for example, because I had to eat to gain stamina, maintain my weight, and stay out of the hospital. Eat, eat, eat, eat, even though I wasn't hungry and the food proved, depending on the day, either unappetizing or nauseating. I wasn’t much fun to be with. I was self-absorbed and indifferent to my surroundings. I was bored and boring. I felt guilty that I was so much trouble for her; at the same time, I felt grateful that she was doing so much for me. I also felt angry at being so helpless. All of these mixed feelings were probably quite intense, but my experience of them was dulled by drugs and fatigue.

For months after the transplant, I did what I could to get better, stronger, healthier, which for me also meant putting it behind me. I wanted to get on with life, get back to work, get out into the field, go to south Texas, Arizona, Alaska for some serious birding adventures. I did yoga and meditation to stay in the present moment, and I made plans for the future. I avoided the recent past. I think I wanted to avoid the past because it was, first of all, terrifying, and second, so terribly boring. Mine was the story of Lazarus, weakly paraphrased, but even for Lazarus the miracle seemed more bewildering than amazing.

I am among other things a writer, and all during the period from diagnosis to remission, people told me that I ought to be keeping a journal: this was an unusual experience, I should be recording it. But I didn’t want to write about it, I just wanted to live. After the transplant, I don’t think I could have written anything about the process anyway, even had I wished. I took lots of books to the hospital and couldn’t read any of them there. I couldn’t read at home either. The only writing I could manage took the form of email messages. Like most other transplant patients, I was experiencing chemobrain.

Only much later, without actually intending to do so and almost against my will, did I start writing poems about the transplant experience. This began on my second anniversary. Collected now in a book called Transplant, these poems deal with everything from the shock of the leukemia diagnosis to the joys of remission. There are poems about the donor search, about Cytoxin, about walking around with tubes and bottles, about mouth sores, and about hospital yoga. Here is a poem that deals with coming home:

Discharged

Since I had a lingering infection in my leg I got instructions
In how to flush and clean the various connections
For my home IV. Then we both got instructions and commiseration

On what would be possible, or rather not possible, with our sex life
In the coming period, from our favorite nurse Lea,
Who was very gracious and funny about it, and also quite sexy

Incidentally, I thought. We got instructions about diet
Too: no restaurant salads, no unwashed fruit, no sushi, microwave
All leftovers, wash hands, wash knives, wash cutting boards,

And then it was time to go. And believe it or not I felt nostalgia,
Nostalgia for Lea, Terry, Terri, Voravit, and even Dr. Adams,
And that young slight black man whose name I never heard, midnight

To eight, who would come in speaking his phrase in a voice
Like Nat King Cole’s voice, and with sweet prophecy
Night after night would say, "Vital signs, vital signs."

It took two trips down the elevator to clear out all
My accumulated possessions. We left room 111, 8-A,
Behind for good, I earnestly hope, although we do return

At Christmastime with gifts and sentiments for the staff;
Last year it was clementines and some modest earrings for Lea
And a six-pack of Bell’s Amber Ale for Terry,

I can't remember what else, but these people were great.
Lynette and Barbara went to get the car while I waited outside,
Smelling cigarettes for the first time in a month. Then home,

Where our friends and relatives had sanitized the house
Of dust and pollen and unruly plants, and where my dog Sadie
Barely recognized me, but where Lynette and I could sleep in bed.

As this poem suggests, the transition from hospital to home is a little disorienting. During the final days in the BMT ward, we patients become increasingly eager to leave. Antsy. My own departure was delayed by a leg infection, and when I first saw the red sepsis snaking up my vein I wanted to go home so badly that I considered (briefly) concealing this perilous fact from the nurses. However, no matter how eager we are to get out of the hospital, we come to feel safe there.We are cared for.We are cared for by fantastic, competent, wonderful professionals. I liked all my nurses and doctors, and I came to depend on them. I had turned my private room into a home away from home, stuffed with various possessions and knick-knacks. Would I be cared for well enough at home by my wife, however well-intentioned she was? I wasn't sure—-even though she had already spent two full days with friends and relatives painting, cleaning, and otherwise creating a safe environment for me.

Several of our friends and colleagues cooked casseroles for us, ran errands, and did some household chores. But Lynette did most of the work. She drove me often to the hospital for clinic visits, she shopped, she cleaned vegetables and cutting boards and knives, she scrubbed surfaces, she vacuumed. Whereas we had previously split the household chores fifty-fifty, she now did all of them. She also kept on working, at a reduced load. This was the sort of generosity we could expect from each other if either of us was sick, but my sickness was lasting for weeks and weeks, and I wouldn’t be functioning fully for months. Yet for the most part she received little acknowledgement for her caregiving. I was the center of attention. I was being given labels like "warrior," "courageous," "survivor." Although everyone thought she was a real trooper in giving so much support, Lynette was getting very little support herself.

Even by me. Even though I recognized at the time the inequity in the situation, it seemed inevitable.What could I do about it? Even though I talked about and sometimes thanked her for all she was doing, nothing I could say could change the fact that she was going to be overworked and emotionally stressed. It was inevitable. It was built into the contract of patient and caregiver. It was in the job description. In other words, I was taking her love and care for granted. I am not proud of this attitude in retrospect, but I don’t want to gloss over it. The following poem is indicative of my experience as patient:

Watching the Lilacs Grow

The first weeks home, flat on my back on the living room couch,
Short slow walks with Sadie,
Nausea, no appetite, almost force-feeding myself
To gain stamina, no weight loss allowed, doctors' orders,
Clinic visits twice a week, my face the color and consistency
Of beige naugahyde, bald as an ant.
When I wasn’t sleeping I was complaining loud or silent,

And all this time the lilacs were coming into bloom
Then leafing out, so beautiful, something I’d never ever seen
Before, in that I don’t usually spend days on the couch,
It was like a time-lapse movie in real time
Or a meditation retreat. Then the Mourning Doves
Started carrying nesting material into the highest lilac,
And things got a little more lively. Not much.

Note here my persona's historically accurate self-absorption. Note that the biweekly clinic visits are mentioned, but that there is no mention of the driver!

Lynette did get some much-needed emotional support at her job, where as a dental hygienist she works closely with colleagues and sees a steady procession of familiar patients. She would often be asked how I was doing, and occasionally she would be asked how she was doing. Although it may have seemed almost heretical, the idea emerged that she deserved a vacation. So once it became clear that I was probably out of the woods, that the clinical indices of this and that level of this and that had stabilized, she decided that it would be okay for her to travel a hundred miles from home and to stay away for two nights, to attend a yoga conference in Kalamazoo. For her at this point in time, going to Kalamazoo felt like going to the Bahamas. But it took planning. She couldn’t just go.We had to make arrangements for this, as I couldn’t be left alone. So I called an old friend, and he eagerly served as my substitute caregiver:

Michael

My best friend from high school visited so Lynette could go to a yoga workshop and take a break from all this. Michael, like the archangel, is an aggressive friend. It may be his personality, or it may have originated when we were in coastal Maine together for a month painting his Dad's house, eating illegal lobsters and playing cards. This was pre-beer.We drank Lapsang Suchong tea. Once we played cribbage all night, the agreement being that the loser at dawn would carry a designated large rock across the mudflat then and there. He lost, he squinted, he squished.

Michael, the zero-proof beverage expert, had me drinking twice as many Arizonas, Vernors, ice waters, and herbal teas than I needed, called me "baldy" at every chance, snapped me up for walks I didn’t want to take, and made numerous unwanted appearances at all hours.We drove to Monroe to see the bronze Custer equestrian, which he needed to photograph because he is also the foremost expert on public sculpture in America, and because he needed to deduct this trip under his Schedule C travel tax shelter, which meant documenting a statue by the minor master Edward Clark Potter, on whose career I received a free lecture.My first long drive, and I felt like seaweed at low tide. What a pal.

As is probably clear here, I love Michael but I love Lynette more. Although grateful for Michael’s care—and grateful for his having enabled Lynette to get away for awhile, I was happy and more comfortable when she returned. Because she’s my wife and we know each other so well, and because she was my caregiver, and because maybe there can only be one primary caregiver, I wanted her with me. It was love, and it was dependency. For richer, for poorer, in sickness and in health ...

However, the model of the caregiver is not a very good model for marriage, at least not for our marriage.We had struggled off and on with co-dependency issues in the past, but here was a case of structural co-dependency whose co-ness was almost entirely gone, whose dependency was almost entirely one-way. She could not go on giving like this and remain mentally healthy. Something had to give. Luckily it was my extreme neediness. Because my medical recovery was relatively uncomplicated, and because I myself felt discomfort at being constantly cared for, my neediness could diminish. As I got stronger and healthier, freer from risk, more able to fend for myself, her life could turn more normal. She could spend an evening with friends, or resume her yoga teaching, or work longer hours. I could feel more useful. Eventually I could focus on things I wanted to do besides just staying alive and getting healthier.

Meanwhile I could cultivate other friendships. With John, I could go on longer and longer dog walks, for example. I'm not sure that these were pure friendships, for just as my wife was doubling as my caregiver, my friends were doubling as specialized health providers. Thus John and I would walk Andy and Sadie because we liked hanging out together, but we would do this also because both of us agreed, implicitly, that John was going to be my stamina specialist.

Another friend became my chemobrain therapist:

Jonathan

Once a week he would take time out from his Spinoza
And come over here to activate my weak mind at chess.
Jonathan also plays with Rudi Arnheim, the pioneering
Film theoretician and art critic. It’s intellectual
Fun for them. They never play through their endgames;

They spar over space and pieces, then agree to a draw.
Chess is strictly spatial, schematic, and silent, true,
But the main idea is to outsmart your opponent and win.
The main verbs in Chess Life for this sort of activity
Are: smash, kill, trap, humiliate, wear down, and outfox,

And these are the more civilized verbs, not the verbs
In the actual minds of chess players, who sit violently
Imagining the deaths of their opponents, higher rated
Or lower rated. You can feel like an assassin,
Or you can feel like someone stomping a cockroach.

I've never actually played in a tournament, however,
And neither has Jonathan.We just play recreationally,
But we’re pretty good players, we have some potential.
He plays his Chessmaster-6000, I work through Chess Life,
Both of us determined to smash and kill each other.

Jonathan is more of a trap and humiliate player,
Whereas I am more of a wear down and outfox player.
He initiates his power Judit Polgar opening, but I sit back
Like Karpov, serene, knowing I will wear down his useless
Attack and ultimately outfox him, a pawn up, in the endgame.

Just as chess sublimates warfare, this particular chess friendship sublimated my struggle against cancer. If I could learn to think again, get up off the couch and move, make good tactical moves with what I had available, maybe I could outfox my leukemia.

Or that was the idea. I'm still not sure how much my own play had to do with all this. To survive the ordeal, I needed not only my will to struggle "with a positive attitude," but the combined efforts of my medical providers, wife and caregiver, friends, colleagues, and even insurance company--as well as luck and, probably, grace. How many times did Lynette kill germs that might have killed me? How many times did she remind me to eat, the cumulative effect of which was that I kept eating, against my own volition? However isolated it can feel to be a transplant patient, I knew very well that my recovery depended largely on others.

It's hard to measure the value of caregiving in a life-and-death situation. The costs were evident enough, though, even to me in my debilitated state of mind. Lynette seemed tired, haggard, anxious, wistful, quiet. Although she never complained about such indignities as nighttime nausea or profuse sweating, I could tell that I had lost some of my physical attraction ... Nor, of course, was I even minimally competent as a sexual partner for quite a long time.

But it was mainly the mental strain that took its toll. Here I refer not only to the precariousness of my health and the stress that that caused. My overall competence was vastly reduced, and so was my judgment about my competence. At times I willfully assumed that I could do something that I couldn’t, or I did things that I shouldn’t have done. During the first month home, our cat died suddenly, and just as suddenly I put on my facemask, grabbed a shovel, and began digging a grave for Nemo. This was a nono: no garden work permitted, no handling of dirt. But I just charged out and did it; I was upset, and I didn’t care what happened. Within this context of bad judgment, I exercised further bad judgment by forgetting to calculate the particular size of not-so-little dead Nemo, his limbs extended by rigor mortis. So I had to enlarge the grave. The day continued like that. For a couple of hours I had dropped my guard completely, and I didn’t care. I was tired of being cautious. I was tired of being disabled. On another occasion—a celebratory occasion, not a sad one—-I also overextended myself:

Hockey

It's the night of the last game of the Stanley Cup sweep and we know
The Wings will win

So I go out and get the shrimp and octopus and bread and greens for
Our TV dinner

Even though I can barely drive and shouldn't be driving at all but
I need to shop early

The octopus being a sacred symbolic food from back when the playoffs
Took but eight games

If I don't get to Monahan’s other fans will buy out all the octopi
To fling on the ice

Which must be done during the final minutes of the rare series when
We win the Cup

And shrimp because we all like to eat shrimp and even I feel like
Eating shrimp tonight

However I overcook the octopus so that it acquires the consistency
Of a warm puck

And I mistake the frozen raw shrimp for cooked and even sushi lovers
Won't eat raw shrimp

So I figure I should go cook the shrimp and then quit cooking and
Enjoy the game

So there I was, driving when ordered not to drive, and no longer the master chef I used to consider myself. I know it was hard for Lynette to see me fumbling around and doing foolish things. She didn't want to nag, and she wanted me to feel increasingly competent and confident, so at times she could only witness such behavior with wry detachment.

Looking back on the experience of recovery, I can see things in clearer perspective. Neither of us was adequately prepared for the huge burden--and huge privilege--that caregiving would entail. I have already mentioned the problem of no one adequately caring for the caregiver.Although I am not sure just what we could or should have done differently to prepare ourselves for this, I think it would have been a good idea to have somehow proactively set up some supports for Lynette. Perhaps this might have come from a hospital-sponsored support group. Perhaps it might also have come from a clearer plan drawn up with the help of a social worker. Perhaps we would have been well advised to concentrate not just on the disease process and the medical protocols for post-transplant care, but on our emotional and spiritual well-being.

One thing I certainly didn't understand was that caregiving begins immediately after the cancer diagnosis. My very first response, aside from shock, was to exclude Lynette: I thought that I should visit and consult with my physician alone. I am ashamed of my knee-jerk selfishness, but I mention it here to address what was a systemic problem for us: the relegation of the caregiver to secondary status. She of course protested my idea and accompanied me to all the office visits, for we both realized fairly soon that what was happening to me was going to affect her. It was her business too. However, our timing was off. I was very reluctant to tell friends and family immediately, which meant (we felt) that she couldn't talk about it either. This was very hard on Lynette, being forced, as it were, to keep this secret for my sake.

If I could do this over again--God forbid--I would insist that we take a vacation together to a destination of Lynette's choosing, not mine. I would also encourage her to take the opportunity to reward herself and pamper herself in every conceivable way--before things got hairy. And I would encourage her to continue doing so, as much as possible, during and after the ordeal of recovery.

I am guessing that the patient-caregiver dynamic has certain commonalities no matter who is involved. But different personalities are going to handle things somewhat differently. In our case, Lynette happens to be a Mediator. Like others of this type, she does a great job of helping and supporting others, and she often relies on others for her own sense of self; but she becomes very vulnerable to self-forgetting. I happen to be a Tragic Romantic, also known as Creative/Depressive. Like others of this type, I have problems with envy and melancholy, and I experience a strong need to be special. So this whole episode was a terrific opportunity for both of us! I could be about as special as possible, undergoing a risky, heroic procedure, and Lynette could be, accordingly, about as supportive as possible.

This was not all bad. It worked. Indeed, I was a wonderful, special patient, and Lynette was a wonderful caregiver. Still, the extreme conditions surrounding bone marrow transplant were not easily sustainable. Each of us needed special healing after the healing. Each of us availed ourselves of individual and joint therapy in order to work out some of the lingering issues that arose from this extremely codependent experience. In conclusion, I would like to offer a quiet ode to my caregiver. Here we can smile and laugh and make love again, and the plants are back in the house:

Lynette

The way she turns her mouth up squinting into her camera,
Her capacity
To see through things generously in herself and the world,
Even in me;
Usually has three dozen tropical plants and flower pots
In our house
And waters them on schedule before walking off to work
Monday mornings.
She has a whole desk drawer full of funny birthday cards
And postcards,
Yet she can solve and resolve any conceptual issue at hand
Just like that,
And when I keep shoving poems under her nose she is always
My best reader.
She can press paper, garden, bake apple pies, make pizza and
Belly-dance;
Makes love slowly, and she has hundreds of dental patients
Who love her
Too, and her yoga students, me one of them, who admire her
Good teachings
And her easy humor. Her smile in response to love. Her
Smile, playing,
And for me her inevitable laughter at her own jokes, always
Hilarious.

Macklin Smith, PhD, teaches English literature and creative writing (poetry) at the University of Michigan. He is also an absurdly obsessed birder, who has traveled to the outer Aleutians, Newfoundland, and other North American hot spots in search of rarities. In order to maintain some semblance of spiritual fitness, he also practices yoga and meditation. Macklin's transplant, for Chronic Myelogenous Leukemia, took place at the University of Michigan Comprehensive Cancer Center on March 20th 1997, the day of the vernal equinox, and he remains grateful for life, good health, and the support of all involved. His caregiver Lynette and he have been married since 1987. They met in a yoga class. Macklin has recently published a book of poems, Transplant, available from Shaman Drum Books.

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