september third will mark the one year anniversary of my stepfather’s passing away. a year ago today, he was in intensive care at the university of washington hospital in seattle.
just about eight years prior, he had been diagnosed with a terminal and just about unheard of illness called myelofibrosis. this disease hits only about one out of every one hundred thousand people in the united states. because it is so rare, research on this disease is sparse at best. it is a disorder of the bone marrow and the only true “cure” for myelofibrosis is a stem cell transplant. i say “cure” because even if a patient is lucky enough to find a match (the odds are slim to none), the survival rate of a patient following a transplant (which in and of itself is a dangerous procedure) is anywhere between fifteen to thirty percent (if memory serves) and even then, the quality of life in such a patient that does survive a transplant is expected to be quite poor (i think in all those years i only remember the doctor telling us one story of a survivor who went on to live a somewhat quality life).
ugly ? yes. quite ugly. ugly doesn’t even begin to describe this horrific disease. all that said, the longer a patient can live with and manage his or her symptoms (in an effort to hold off on a transplant), the better. the transplant may be considered a cure, but in reality it is more or less considered an expiration date if not for one’s life, but for one’s quality of life. i repeat, ugly.
when he was diagnosed, he was given one year to live. now, i don’t know about you, but i’ve never had a doctor tell me that. i have no idea how i would feel or react. i am sure, as a patient, you ask because you want to know, but at the same time you probably don’t really want to know the answer to the question of “how long do i have?” expiration dates are for things like milk and eggs, not people.
it was at this point that my stepfather, who was one of the more laid back people you could have ever met, became, quite understandably, incredibly anxious. before i go any further, let me tell you a little bit about him.
he lived in miles city, montana for just about his entire life. a tiny town in the bottom right corner of the state. a town so small that the only reason you may stop there would be to fill your car up with gas while on a road trip. but don’t judge a book by its cover, miles city was an amazing small town just like so many midwestern towns are. if you bothered to drive to main street, you’d understand, like i did when i first visited, why people would choose to live there. it was quaint, understated, and felt entirely historic. it was filled with amazing people, just like my stepfather, who loved and lived for their small community. everyone knows everyone and the many stories he told me about his life there (of which there were many as he was an avid storyteller) would leave me laughing until i cried.
he was an attorney during the week, owning and operating the one and only law firm in town, Lucas and Tonn. and he was good, too. being the only law firm, my stepfather and his partner had to be widely talented, involved and well versed in just about any field of law you could be. he told me of dozens of cases he’d partaken in (most of which he’d won) and i was always astonished at his broad range of skills.
and another thing about my stepfather :: his sense of humor. he was one of the funniest people i have ever met. he was an amazing story teller and had the most impressive poker face of anyone i’ve ever met. he could deliver the most ridiculous lines with a straight face and, with the exception of his son (who knew better by now), me, my mom, and my sister would fall for them every time.
by the time the weekend rolled around, he was able to take off his suit and tie and put on his levi’s and cowboy boots to do what he loved to do best, which was to run his cattle ranch about an hour south of town. it is written best here:
“Attorneys thought Lance was a rancher with a law degree, ranchers thought Lance was an attorney with a ranch; but those who knew him best knew his passion was the ranch where the roots of his legacy began.”
i am writing about him today because of a piece that i just made for Modern Eden’s show, “Momento Mori.” loosely translated from latin, this phrase means “to know one’s own mortality,” or “to know that some day you will die,” or “to know that some day you must die.”
when given the assignment of making a piece for this show i had a hell of a time coming up with an idea. the only person that kept coming to mind was my stepfather and his battle with a disease that was supposed to have taken his life seven years earlier. during those eight long years, he lived his life fully. he continued to run his law firm and his ranch. when his symptoms got worse, he always persevered and i don’t think he ever took a day off from work or cattle ranching because of it, no matter how ill he may have felt.
one symptom of this disease is an enlarged spleen. this happens because when your bone marrow is no longer able to produce blood white blood cells, the only other organ that can produce those cells will work overtime to compensate. that organ being the spleen. his spleen reached a size of epic proportions, a diameter of sixteen inches (the largest spleen the fred hutch cancer research center claimed to have ever seen). instead of following his doctor’s instructions to quit riding horses, he bought himself a bullet proof vest that he would wear while he was riding. he suffered a few falls and was even kicked in the stomach by a calf. the risk of course being that a spleen of that size could easily rupture and a ruptured spleen with his condition would essentially mean death.
but that was Lance. he refused to allow this illness to interfere with his life and it is in my humble opinion that if he died while doing what he loved most, he would have died happy. and that was a risk he was willing to take and who can blame him for that ?
over the course of those eight years, he was painfully aware of his own mortality. the one year mark had come and gone and his anxiety had reached a point where he could no longer sleep or go about his daily life without being distracted by thoughts of death. he told me, on several occasions, that he was afraid to go to sleep for fear he would not wake up. so, the doctors prescribed him some anti-anxiety medication along with some sleeping pills.
so, during those years, his nightly regime began. he would arrive home from work around 5:30pm. dinner by 6:00. and by 8:30 or 9:00, he’d crack open a budweiser, sometimes two, but never more than that. with that beer, he’d swallow his sleeping pill so that by the time 9:30 or 10:00 rolled around, he was in a relaxed stupor that allowed him to go to bed without anxiety. and it is here that i must interject and say that this was not substance abuse. he was not using alcohol or drugs in excess. some people smoke weed to fall asleep. he just happened to love budweiser. and the combination of that one beer and that one sleeping pill was enough to allow him to fall quietly to sleep, each night, without the fear that death would prevent him from rising the next morning.
by the time 10:30 or 11:00 rolled around, he would rise from bed, still asleep, and wander down to the kitchen. there, he would open the box of chocolate chip cookies that was always on the counter. a box of cookies that my mom bought every day for him for this very reason. in his sleep, he would open the box and consume every last cookie and wander back up to bed and go back to sleep. i witnessed this on many occasions and my mom witnessed this almost every night. while telling this story this may seem somewhat sad, but when you are sitting on the couch watching television and your amazing and hilarious stepfather has slept walked into the kitchen to consume an entire box of chocolate chip cookies (one particular brand) only to walk back to bed and snore the night away, my mom and i could never help but chuckle to ourselves. not because we mocked his condition, but the whole scenario was endearing and sweet. it was his very sweet and subtle way of coping with a disease that was destroying his body. and if a beer and a box of cookies was all it took to let Lance rest peacefully every night, then how wonderful is that ?
so, i made this piece in his honor. i embroidered a budweiser can onto some fabric and stretched the fabric over a collage of the packaging of the chocolate chip cookies he ate every night. i embroidered it because it felt more like home that way. like a throw pillow. or like one of the many framed embroidered pictures that hung in their home. i wanted this piece to feel like home and, more importantly, to feel like Lance.