The graduating class of 1982 is taking the stage. We shuffle to find our seats amid a din of excitement. Muffled laughter echoes in my ears as I glance around the cavernous room. I see smiles and embraces, but I am not smiling or laughing. Today the results of a bone marrow biopsy have revealed that my brother’s leukemia has returned. Josh is only 9 years old and my eyes sting thinking of the “little man” outfit he had picked out to wear for my special occasion. In the dressing room just a few short weeks ago, he was so proud to show me his tie and dress shoes. It’s hard to imagine that we went from such glee and frivolity that day only to be so devastated. How quickly a graduation can seem so insignificant. He never did get to don that outfit.
Josh’s cancer was very aggressive and it was soon suggested to my family that we try a procedure called a bone marrow transplant. It sounded horrific, but it was his lone shot for a cure.
Marrow donors that are usually the best match are siblings because they share similar genetic material. I was the only other child in the family, so there was a lot riding on the results of my testing. It seemed like an eternity waiting to hear if I was a match, but one day at work I received a call. Not only was I a match, I was a very good one. Tearful, I hung up, and my supportive coworkers wrapped their arms around me and whispered sweet encouragement.
My brother resumed treatment in preparation for his transplant and I marveled at his courage and his humor. Josh would frequently offer to hold a child’s hand for a bone marrow biopsy or spinal tap. This behavior took us all by surprise because my brother was a kid who cried when he scraped his knee…being tough did not seem part of his repertoire. How mistaken we were.
It’s the night before I am to donate my marrow requiring a hospital stay, my first ever. I am anxious beyond description and dry heaving in the little bathroom, unable to shake the smell of the hospital disinfectant and feeling immense shame for being so frightened in such stark contrast to Josh’s bravery. I finally ask the nurse for something to help me sleep. Request granted, I slumber until dawn.
As I was being prepped for the procedure, I am thankfully given some more drugs to help me relax. It felt surreal to be on a gurney, the operating room my destination, looking up at the staff with their scrubs and little hats on. Passersby with curious eyes glance at me as I am being wheeled into surgery.
The procurement of my bone marrow was uneventful from a physical standpoint. I woke up and was only slightly sore in my lower back where they extracted my rich marrow with large needles and syringes. I was relieved, hungry, and now, hopeful. After I inhaled a chicken sandwich and a ginger ale, I was permitted to visit my brother in the small transplant unit where only one other patient had a temporary home.
A mysterious part of the procedure is that the bone marrow is given to the patient intravenously and the marrow magically finds its way into the recipient’s bones. It still fascinates me to think about the intelligence of the human body.
As my marrow dripped into Josh’s veins, I desperately prayed for his recovery. He looked awful, his recent hair growth now once again coming out in clumps. His beautiful eyes were rimmed with dark circles and his lips pale and chapped. Looking at him it was hard to imagine how he would ever again reach a state of health. He never did. Five weeks into the transplant an infection took hold from which he never recovered. Our sweet Josh was gone.
In the days and weeks that followed my family was surrounded by friends, all trying to provide comfort and assistance. A small burial service was officiated by my parent’s inner circle. One gentleman standing under a large weeping willow tree, gripped his cane to steady himself as he spoke. Dick was the only other person I had ever really known who had cancer, and he had been ill and in discomfort for many years. He had something called Hodgkin’s Disease. Even in my immense grief, I thought it brave of him to participate and speak, knowing that this same group may soon be gathered again to say our goodbyes to him.
When the immediate support subsided and the routines of beloved friends resumed, we were left to grieve in a home with a silence that was deafening and grief that was palpable.
Josh’s bedroom was at the top of the stairs. It was unavoidable and awkward to walk by it and excruciating to enter it.
My parents so grief stricken, marriage on the rocks, our home had quickly morphed into some kind of unfamiliar and uneasy place. I could not eat and could not sleep, and I was to leave for college in less than three weeks.
My parent’s discussed (argued) just what to do with their grieving eighteen-year- old who had just been through the emotional and physical wringer. Do we send her off? Do we wait a semester? Ultimately, they thought it was in my best interest to carry on with my life as planned and engage in the normal activities of my peers, so I packed my bags uncertain as to my feelings on the subject.
Upon arrival at The Ohio State University, I felt sick with anxiety but also experienced a glimmer of relief, grateful for the distraction. After a long and tearful goodbye, my parent’s left and returned to our altered home.
College life was not at all congruent with my inner world. My concentration was for shit, and drinking buckets of beer on High Street with kids that I imagined were devoid of any troubles, did not appeal to me. Basically, my grades were average, my social life sub par, but going home would bring me no relief and was not an option. Oftentimes in life decisions are made for you.
I am home the summer before my junior year working in laboratory medicine at a downtown hospital. I am working long hours making a decent wage to pay for my tuition, when one day as I’m casually rubbing my neck, I feel a rather large lymph node. I sheepishly ask a nurse friend to feel it and I immediately sense her alarm.
“Jennifer, this is the largest lymph node I have ever felt. You need to get this checked out right away.”
Being a basically compliant person, I make an appointment to see our family internist, who does some blood work, checks for mono and then is dismissive citing that I probably just have some viral thing that will work itself out in time. Relieved, I really don’t give my lump another thought.
At this time Dick, no longer using his cane, is dying, his Hodgkin’s unrelenting. I go to visit him in the hospital and he is on a respirator and agitated. His wife Louise informs me that he has been really worried about me in spite of her protests that I am fine. I go back into his room and tell him that I am doing well and that I love him. He gestures for a piece of paper and scribbles, “I love you” and hands it to me with tears in his eyes. That was the last time I saw him.
A few weeks later I head back to OSU feeling like I’m filling some prescription for life at twenty. To garner a bit more enthusiasm I begin to think about my boyfriend that awaits me in Columbus.
As it turns out, my boyfriend had other plans. Apparently, he was having a party to which I was clearly not invited. Shocked and saddened, I bought a 6 pack and tearfully shared my tale of woe with my roommate.
When I arose the next morning my neck was horribly stiff and sore and it was difficult to move. I got out of bed, went to the mirror, and couldn’t believe what I saw. The lymph node was now the size of a softball embedded in my clavicle. Given my experiences, you’d think I would have panicked, after all, I knew what a lymph node was and what it was associated with…leukemia, Hodgkin’s.
Instead, I found a cute scarf to cover the unsightly lump and headed to the OSU football game intending to run into the wayward boyfriend, imagining his regret and certain forthcoming amends.
Fantasies are just that, fantasies! He gazed my direction but did not look remorseful. Discouraged I went back to my dorm and decided to take a jog to the OSU emergency room to see if they could give me a little something to relieve the pain of my stiff and swollen neck, and, possibly, my broken heart.
I must have looked ridiculous in my little Nike running shorts, Sony Walkman headphones draped over my sizeable and now quite noticeable lump, marching up to the check-in window at the ER.
I was swiftly ushered back. Blood work was drawn and chest X-rays taken.
I was sitting on the gurney rhythmically swinging my still tan legs and looking down at my running shoes when the curtain to my area swung open and six residents surrounded my make-shift bed.
The questions began, “ You ran here?”
“Were you out of breath?”
“Yes, no and no,” I replied.
“Your chest X-Ray is lit up with lymph nodes and the Head of Leukemia and Lymphoma wants to admit you right away.”
I begin to cry and the expressions of those inside my curtain soften, and tissues are handed to me.
“Don’t be alarmed it may be nothing serious but we have to be sure and do a biopsy on that node,” says a doctor who looks to be my age.
I respond, barely audible, “my brother died of leukemia two years ago and I was his bone marrow donor.”
Any arrogance that had been displayed by the team of six dissipated rapidly as the entire group tried to comfort me. But I saw their expressions, and it was not at all comforting.
“What are you trying to rule out?” I hesitantly ask.
The Head of Leukemia and Lymphoma came to see me first thing the next morning and outright stated that she was certain I had Hodgkin’s lymphoma, stage I or II, and she wanted to do the biopsy right away and then start chemotherapy immediately.
I was not certain of much, but of this I was certain. There was no way in hell I was going to receive chemotherapy out of a dorm room with a bunch of Michelob slugging, horny kids running around. I needed to go home!
Enter my new home, The Cleveland Clinic. No time was wasted getting my biopsy done and my protocol laid out. I was to have another surgery to try and remove some of the tumor, then three cycles of MOPP chemotherapy, six weeks of radiation, followed by three more cycles of MOPP. Prognosis? Great!
Still reeling from my brother’s loss, it was hard to imagine that this was even happening, but my parents had been through so much pain there was no way I was going to fold, so I did my best to pull myself together and do what I had to do to get well.
One of the things that I was most afraid of and I realize is ridiculous, was barfing. I did not come from a family that was prone to that sort of thing and having only gotten sick to my stomach maybe twice in my life, it was an unfamiliar and retched feeling.
I had seen how sick my brother had been and I was terrified about this aspect of treatment. It turns out that the M of MOPP, Mustargen, was one of THE WORST drugs as far as making patients sick.
The other more superficial concern that I had was losing my hair, which was very long and quite nice, if I do say so. When you are a twenty- year old girl, these things are of concern. Actually, they still are.
Although I was sick as a dog after my treatments, and my hair thinned out considerably, I completed all of my treatment within a year.
Those around me, including my oncologist, wanted to know when I was going to return to Ohio State, but I had no such plans. Sometimes your life is so forever changed that you can’t go back. I did not fit into the mix before and I most certainly would not now.
I moved out and got my own apartment and went back to work at the hospital downtown, where I was promoted to do marketing and handle ancillary accounts for the laboratory. This turned into a career for a time and I took night classes to chip away at my degree.
As the years rolled on with clear CAT scans and reassurances from my oncologist, I began to feel more at ease and I truly did not give my Hodgkin’s much consideration.
Six years of remission later, I suddenly become anxious. It felt like a generalized anxiety, and I could not pin point the origin of the feelings.
I experienced a few full-blown panic attacks and constantly felt like I was wearing a turtleneck that was too tight. One day as I was driving out to a sales meeting, I realized illness was on my mind.
The idea of relapse was creeping over me like a dense fog. I decided to check my own blood work. I did, after all, work in a lab. It came back fine. I began to feel for lymph nodes. Nothing there, but the panic and the thoughts were becoming more frequent, so I called for an appointment.
The oncologist that had previously treated me had moved to another hospital, so I had a new doctor to meet, and to be honest I was not up for establishing myself with someone new. I also suspected he would think I was loony for coming in with perfect blood work and nary a lymph node.
I was nervous waiting to be called back and beginning to question why I had even come in the first place.
“Hi, I am here because I think about illness, but my blood work is fine, and I have no apparent lymph nodes.”
I would think I was a tad crazy.
Finally, I’m called back to the exam room where more waiting ensues like a slow form of torture.
Enter Dr. Brian Bolwell. Even though I have major concerns and am basically a wreck, I take an immediate liking to him, which in and of itself brings relief.
I begin to explain what is going on with my thoughts and anxiety and how it seemed to happen out of the blue after years of remission.
He begins to reassure me that after six years of remission I can be fairly confident that my Hodgkin’s has not relapsed, but to allay my fears he orders a CAT scan, with continued reassurances.
I will never forget the look on his face when he came in to give me the results. As soon as he opened the door I knew. It was back, and it was bad.
I wasn’t crazy, my body was telling me, even alerting me to the mishap lurking within. If I hadn’t listened, this story would have ended much differently. This was a huge personal lesson in the mind/body connection, and I have respected it ever since.
After multiple biopsies and tests, it is the same type of Hodgkin’s and once again a large mass in my chest.
I begin chemotherapy immediately, a different protocol this time with the acronym ABVD and I am thrilled to try this new anti-nausea medication just released. They give it to me in an IV right before I get my chemotherapy drugs. I find it to be nothing short of a miracle, as I do not even hiccup, much less barf after my first treatment.
My next appointment is a meeting to discuss a complete plan of action with my new doctor. I arrive feeling buoyed by my barf-less first experience and ready to hear the plan of attack, but I wasn’t prepared for what was laid out.
Dr. Bolwell begins to explain that now that I have relapsed, traditional chemotherapy most likely cannot offer me a cure, only one thing can…a bone marrow transplant. Being sensitive to my history with transplants, he advises me to think about it for a bit, but I already know my decision. I had to do it and as I tell him so, he insists that I take time with my decision.
The next day my arm is turning purple, so I had to return to the clinic only to find out that I have a blood clot, probably due to the large mass in my chest. As I am sitting in his office waiting to be transported to a floor, I with vast certainty, tell my doctor that I want to go through with the transplant. He smiles at me with kind eyes and promises to get me through it.
Fortunately, my own bone marrow wasn’t diseased, so that I could donate for myself. After a few rounds of chemo to shrink my tumor, I went back into the operating room, this time using a local anesthetic so I could chat with my new doc and favorite nurse while they extracted my marrow, the dulcet tones of Fleetwood Mac as the backdrop.
The date is now set. To enter a place where you have watched your sibling die is incomprehensibly frightening. But underneath the fear, there is also a confidence, an inexplicable knowing that I am going to pull though, so on June 25th, 1991 I entered the bone marrow transplant unit.
Everything ran like clockwork, so very different than what I had witnessed the previous decade. The unit was large and well staffed, competence reigning. My private room was actually cozy. And while I felt pretty crummy many days, there were only a few days that I felt so sick that it scared me.
I felt a certain closure, a “come full circle” moment, as my marrow now dripped into my own veins, my survivor guilt waning.
I watch my blood counts climb as the new marrow takes hold and inquire after each blood draw to hear the status, feeling more relieved with each incremental increase.
My hair now completely gone, I place a wig, strikingly similar to my own locks atop my head. It’s itchy but has me smiling as I glance in the mirror and actually look recognizable.
On July 17th, I was discharged after twenty-three days of isolation. As I step out into the July sunshine, I take a deep breath of fresh air. The acuity of my senses heightened, I am filled with wonder at every sight and smell as if my life is now in Technicolor.
The drive home is quiet and reflective, not heavy, but hopeful. Though knowing there is a long road ahead, I can glimpse at a future and that excites me.
Well-meaning people often advise, “put that behind you and move on with your life.” It sounds reasonable, but here is the thing. Cancer is ubiquitous. It seems a week hardly passes without hearing of someone’s recent diagnosis, which always reminds me of my own struggle, as well as my good fortune of 26 cancer-free years.
I never want to forget my experience. It informs every corner of my life and how I live it, savor it. To find meaning in those messy parts and to use that in service to those that are still in its midst is a privilege. It has made my life richer, fuller.
I want to remember every hard day, every tear shed, every hair lost because with it comes an unwavering appreciation and perspective that I cannot imagine living without.