LONGER THAT EXPECTED: ADULTHOOD AFTER LIFE-THREATENING CHILDHOOD ILLNESS
A Wising Up Anthology
II. ON THE CUSP: MORTALITY AND ADULTHOOD
ROGER SIPPL
THE REST OF THEM
The small animals are only made of salt crystals rolled into spheres, imperfect, blowing from right to left,
north to south, across the freeway approaching the entrance to the Dumbarton Bridge which spans the miles of estuary
of lower San Francisco Bay. They blow, pause, swirl and re-blow, dashing across the road terrified by cars with tires that flatten some of them, uncaring.
Truly, only salt and foam blown from the protein and brackish mix on the surface of the bay— water blown into ripples, then waves that the wind pushes to trip over
the shallow mud flat near San Jose, their tops gusting off into this tumbling mist that dries instantly leaving behind, in mid-air, the exoskeletons
of these life forms that have shed that surface for balling up to eddy then rush across these streets that separate salt marsh from open fields.
Some give themselves up-- hope expiring, like me, on my way to Stanford University Medical Center feeling sorry for myself with solid tumors,
not feeling the attempted cure supposedly underway, doubting it entirely, letting myself cry while changing to the fast lane to pass my thoughts as I run over those few that I can, worrying
about the rest of them, escaping to the other side of the freeway, floating and flowing through the open fields, blowing out of sight.
First appeared in JAMA Oncology
MONTEREY BAY
Monterey Bay has to be about death because inside that the cold water life just can’t be enjoyed.
Death also because of the clouds in your face called fog and the wind-chill factor that my mother would say just blows through your bones. I have driven down here from Stanford Hospital, as a nineteen-year-old radiation therapy and chemotherapy patient, to celebrate this Friday afternoon, to throw up here instead of back in Berkeley, to be someplace else for my two days off from treatment.
It isn’t the fun warmth of the sunshine they have in Southern California, where it is mostly false and unearned. Monterey sunshine is hard fought. Here, where orange light and any warmth is unexpected, when it broadcasts a clear sky over flat seas meeting the low tide rocks, the weathering of the underskin of a greenless coastal tree attracts my immediate attention. Is it dead?
There is life in the water, of course. Thriving sea life. Tuna periodically, even though they seem tropical. Sea turtles migrate here.
But most of the life in Monterey Bay is anemones and primitive invertebrates-- crabs and snails frequently hugging the bottom and resisting the water’s frequent, and sometimes strong, movement.
When a sardine gets hit by a predator it’s over. I’m sure, as I watch the surf hit the sand dunes, it will be over soon.
Will I be wrong?
First published in Real Nature by Roger Sippl
THE SWEATER
The doctors tell me the main tumor in my chest is the size of a softball. She uses a double strand of yarn
and thin knitting needles so the arms and walls to cover my chest and back will be thick. There are more in my bronchial system,
my neck, below my diaphragm, and maybe in my spleen. The sweater will warm me even in the wind. She had to do Catholic
Penance, a mother’s labor, she repeats non-stop clicks with yarn, mostly acrylic, so it can’t be eaten and
will never decay. She says it is her fault. She should have stopped me from sneaking onto that stupid golf course at night, swimming
with mosquitoes, diving the black lake for lost balls through industrial fertilizer and green dyes, as if she knows what caused my lymph node cancer
when no one else does. She tries to cure me, feels my forehead, clicks the needles together again and again until her fingers hurt and wrists ache
and she can hardly stand up from sitting so long. So I tell her that leaves on trees blow left then right, some rattle and flip,
some move hardly at all, yet some are first to fall to the ground. I tell her the sweater is coming along great as she watches me lose
weight lying in bed. The needles click as she approaches another threshold of pain that relieves her.
First appeared in Ocean State Review, 2016
HEAVENLY WHISPERS
The two nurses were leaning over me as I lay flat in the hospital bed looking up at them arguing against each other about which way the two differently-colored wires, one green and one red, should be inserted into the electrical ports on the small black box with the battery in it. The wires ran straight to my heart.
(This is done after open-heart surgery—two pacing leads are left touching your heart and they trace out into the air so, if your heart stops beating after closure this little box with the nine-volt can be used for the jump start instead of the big external paddles, which are crude.)
“The red wire goes into the port on the right side—yes?”
“Yes, but forward? Which way? How do you know?”
I was almost seeing the full colors of the nurses and the room elements again when I started talking, “Ladies, let’s wait for the doctor now—I’m fine.”
They didn’t shock me, since I was clearly awake, but I stopped short of telling them about the white. Everything had faded to white, as if peroxide had cut loose and my brain had sponged it all as it completely bleached.
I couldn’t hear the alarms at the nurse’s station or in my room when I was out, but I am sure they were loudly alerting about the flat line.
I could barely hear the guy dressed in white holding the white clipboard, talking too softly, whispering, and saying, “Walk toward the light” or did he say, “Walk toward the right”—you don’t want to make a mistake like that at such an important juncture. The white was welcome at first, blissful in its simplicity and resolution but seriously, I had to force myself to think, to ask the question,
“Do I really want this to be over?”
First appeared in Chest, July 2017
ROGER SIPPL studied Biology at University of California at Irvine as a pre-medical student, where all pre-meds were required to also take the Humanities Core Sequence. After surviving this he found himself voluntarily taking poetry writing and fiction writing courses as well.
Upon transferring as a junior biochemistry major to UC Berkeley, he was diagnosed with Stage IIIB Hodgkin’s Lymphoma, which, in 1974, offered only a twenty percent chance of survival. Medical schools did not want his application with this handicap so he changed majors and received a BS degree in Computer Science in 1977.
While at Berkeley he was able to sneak in one class in poetry taught by Thom Gunn. As a Computer Science student he also studied the linguistic aspects of computer programing languages, and began designing English-like languages for information retrieval and storage. He subsequently spent the next forty years in the enterprise software industry, but is now returning to his passion for writing.
He started five companies and took three of them public due to the fact that the undiagnosed PTSD from illness and treatment made him always think that any failure was equivalent to death.
INTERVIEW
What kinds of misperceptions do people have about the kind of illness you had?
Hodgkin’s Disease is now called Hodgkin’s Lymphoma, which is a little more descriptive of the disease as a cancer (although some medical researchers debate that it is—it is certainly unique). Since it has a name like Hodgkin’s something-or-other and not something-or-other carcinoma, most people don’t know that it is a cancer, and they certainly don’t know it is a white blood cell cancer, the solid version of leukemia. Worse than that, most people, especially young people, don’t really know what cancer is. This didn’t ever bother me too much, and I have taught cancer education classes to try to help out here, but what was a problem was when I was denied admission to medical school because they thought I was going to die. It was a problem to have to change career plans, but even with that little misunderstanding, I did somewhat understand, because I thought I was going to die too.
What do people misunderstand about your own experience of your illness?
Back in the ‘70’s, when I was sick as a 19-year-old, people thought I was just out getting drunk or messed up on drugs, and that is why I was gone for long periods and then coming back to the dorm and vomiting all the time. That was a little misunderstanding. In modern time, when I talk about the treatment I received, people misunderstand how harsh it was. Fortunately, now most treatments are shorter and the anti-nausea medications are more effective. Back in the ‘70’s we only had Compazine for nausea, and that little yellow pill was the first thing that came up in the first vomiting session, letting me know that I was on my own. My treatment was radiation therapy to shrink the major tumors before a staging surgery (removing my spleen and sampling my bones, liver and lymph nodes), then this major staging surgery, then more radiation, this time below the diaphragm with worse nausea, and then seven months of MOPP combination chemotherapy—13 months total. I went from 180 pounds to 127 pounds, and had trouble walking because of weakness when I was done. It was more than brutal, so I usually don’t talk about it too much, because no one wants to hear all that. I was Stage IIIB and with only a 20 percent chance of living they had to do all of this to try to save me. So I voted “yes” on all of this, but it is less severe now.
What is an important source of strength you have found through this experience of childhood illness that has helped you as an adult?
Knowledge was the best source of strength for me. When I didn’t know what I had and what was going to happen to me, what the treatment would be and whether I would live or die, or even what my chances were, I was scared. Once I learned about the disease and my treatment, once I had a plan and knew the odds, I was able to be much stronger. Fear is mostly of the unknown, in my opinion.
What is a question that you would like people to ask you about your experience that they rarely do?
Since I know most people don’t consider the discussion of vomiting to be polite dinner conversation, no one discusses the actual process of getting through the treatment, particularly the chemotherapy. The four-drug combination I was treated with was delivered through an IV in the back of my hand, and at least one of the drugs was aromatic enough that I would smell it in my nose as the drug-laden blood started to circulate through vessels in my nose. After a couple of treatments, I would start vomiting when I smelled them mixing the drugs, before putting them into me. Then, around month four or five, I would start vomiting while driving INTO the parking lot at Stanford Medical Center. Pavlov’s Dog was alive within me. I would vomit until I could get home to my bed, and then I would vomit until my stomach cramped and I passed out. Then I would wake up a bit later and go through the cycle again. Was I asleep in between these sessions? I am not sure. I was in some state of consciousness, but I don’t know what state that was. It is possible that the anti-nausea agent was partially digested sometimes, and since it is also an anti-psychotic, I might have been having hallucinations. When you think about what life was like, and what prisoners of war go through, I think it is close. You are trapped, abused, pretty sure you are going to die, and your health is continually taken away from you. I had bad dreams for years, thinking I was going to die, was flunking out of college, and my company was failing (the first company I started, which actually went public). In my mind, all these things were the same. If I failed at anything I was dead. Everything had to work—it was all do or die—everything. I think that was what we now call Post Traumatic Stress Disorder, but who knows.
How has your experience of life-challenging illness at an early age changed your own understanding of what it means to be an adult?
I don’t fear much. I don’t think I even fear death very much. I do what is the optimal thing to do, whatever that means, but I don’t take an attitude of compromise into the world very often. You just don’t know how much time you have, and the disease made that very clear to me. I have tried to instill that thinking into my children, and even my wife, and although I think things have gone pretty normally on that front, I believe that my experience and approach to life has become part of the psyche as well.
How has your understanding of your illness changed as you matured?
I understood my illness quite well from the beginning. I was a premed at the time I was diagnosed, at age 19, and bought Dr. Henry Kaplan’s textbook on Hodgkin’s Disease, read it, and sought him out to be my doctor. I had to commute from Berkeley to Stanford almost every day to pull this off, but I did it.
How has your illness provided insight on other difficulties, stresses, or traumas you may have experienced?
I don’t know if “insight” into my own stresses is the right word, because after surviving Stage IIIB Hodgkin’s Lymphoma I have led a pretty fearless life, but it has given me perspective on what others go through when they experience trauma. I have become sort of the “go to guy” in my neighborhood for consulting on cancers that people get, but more recently, people have sought me out when other crisis situations occur in their lives. I don’t have any training in this, so I stay pretty much in the center of the road in terms of giving advice, and it is mostly really of the “you need to talk to a doctor about this” type of wisdom, mostly for people who are in some degree of denial.
