On Wednesday I officially had my last ITA appointment. The nurses did their regular tasks; they checked my temperature, recorded my blood pressure and drew blood for routine lab work. But they also did some exciting things! A gentle and smiley nurse practitioner (NP) drilled a hole in my pelvic bone for laboratory analysis (yes it hurt) and she also took the PICC line out of my arm. I timidly hazarded a request, Could I start taking walks outside without my HEPA-mask. “Well, let me think,” said the compassionate NP, “Yes, walks without the mask would be fine. Just stay away from crowded places, construction, gardening activities, and always where your mask in the hospital and clinic.”
Wow! The smell of the outdoors! With the arriving tropical rain and the early blooms busting out everywhere, the smells on my first mask-free walk were a symphony of texture. Even the sensation of the air through my nose was noticeable – wet, cool, clear. After months of hiatus, my nose was on overdrive trying to identify each scent. The perfume of freesia and budding wisteria, the sweet alyssum, the delicate emerging roses, the rich freshly watered dirt, the onions frying as a neighbor started dinner, a distant cigarette. Everywhere I turned my head trying to locate the smell sources.
But here’s what I am learning: It is a dangerous and dirty world out there.
There was nothing special about Thursday but around every corner lurked a gardener threatening to sabotage my walk. Directly across the street from my cottage, a truck dumped a pile of dirt and workers spent all day shoveling dirt into wheelbarrows, particles flying haphazardly into the air. As I departed from my cottage, I cautiously clung to the far left of my sidewalk and headed quickly away from the shoveling. Coming around the corner on Santa Rita, I came face to face with a man holding a rake. Luckily, the man seemed to be taking a break from his dirty work so I passed by; disaster averted (this time). When I hit Waverly, I heard the telltale roar of a leaf-blower, so I carefully stayed on the opposite side of the street and meandered down a side ally to get away. However, no sooner had I turned down the ally, when I smelled the pungent full odor of fresh earth. My nose did not deceive me; a moment later yet another gardener appeared from a driveway with his arms hugging a freshly extracted bush, dirt still dripping from its roots only feet away from my face. I quickly did a u-turn and walked back towards the blower. Close call! I continued my walk, returning to my cottage by strategically crossing the street back and forth to avoid gardeners and construction sites and groups of people and gardening trucks and fenced trees and basically anything the least bit suspicious. Walking was turning out to be a high action movie; the dirt enemy could be hiding anywhere.
The strange thing is when I previously walked with my HEPA-mask on, people often crossed the street to avoid me, especially if they were walking dogs or pushing baby strollers. Instead of smiles, I was often greeted with a concerned stare. Since I couldn’t smile back, people usually didn’t smile at me. Kids pointed and asked questions and although their parents always gave them politically correct answers and smiled at me, they hurried them along just the same. Adolescents had been known to shout peculiar things at me. “Do I have to be quarantined?” yelled a boy about my son’s age, as he weaved up and down the curb showing off to his friends. In a drive-by incident an oblivious teenager once called from his backseat window, “Why don’t you go rob a bank?” I wasn’t sure how to respond.
However, now that my mask was off everyone greeted me including gardeners and kids. Didn’t they know it was the same me? Didn’t they know they should stay away? Now it was me changing sides of the street to get away, viewing everyone and everything as a potential threat. I no longer wanted strangers to be friendly; the stakes were too high. Funny how the tables had changed.
A few days ago I was surprised to receive an e-mail flyer advertising a special lecture on the Stanford campus for structural engineers sponsored by a trade association to which I belong (Structural Engineers of North California). The lecture would be held on Thursday in the late afternoon near the main oval. With no plans for Thursday, it seemed like too much of a coincidence not to go, so at 4:30 pm my sister dropped me off in front of the Bishop Auditorium amidst swarms of college kids and adults in suits walking, biking, jogging along the treelined pathways of main campus. I was glad to have my protective HEPA-mask as I weaved among the pedestrians and followed the signs to the lecture.
I purposely stalled to be late, but when I arrived the ushers were still not admitting people into the lecture hall. I inquired if the room was open but the ushers pretended not to hear me (or maybe they couldn’t hear me because I did have my mask on.) So I asked a little more loudly and the young men were forced to respond. “Are you coming to the lecture?” one asked in confusion. It didn’t seem like a good time to explain so I just nodded. Still shocked by my presence, they directed me to a reception outside. “You can have a snack!” the other called after me; to be fair to them, I think he was trying to make up for his friend’s initial rudeness. I tried to imagine having a snack with my HEPA-mask. I guess they just don’t know much about HEPA-masks, I decided. I couldn’t blame them; until a few months ago I hadn’t either.
Nothing sounded more dangerous and dirty to me then a reception for socializing with snacks, so I quickly looked around for an escape route. I found a stairway to an upper balcony where I could watch the gathering from a safe distance. From my second story perch, I saw that most of the guests were in their twenties with clean haircuts and muted outfits, most likely engineering graduate students. I was happy to see about a quarter of these young people were women. On the fringes were collections of older men in suits, presumably professionals or professors, who seemed to know each other and talked enthusiastically over the hum of the crowd. There wasn’t anyone my age, let alone a woman wearing a HEPA-mask. It’s no wonder the young ushers hadn’t recognized me as an attendee.
I watched from above in awe as the people shook hands with one another and then ate petite-sandwiches, transferring other people’s germs directly into their mouths. Disgusting! I was glad to be far away from the mess. Finally the ushers announced the start of the lecture and the crowd began to move towards the entrance door. Every person, who had touched their mouth eating finger foods, now touched the same door handle and I could almost see the microbes celebrating as they jumped from person to person. A germ transportation hay-day! The people crowded together, standing only inches from each other, continuing to eat and talk and cough and sneeze and doing the thoughtless dirty things people do, and I patiently hovered about thirty feet behind the crowd until every last person had filtered into the auditorium.
When the coast was clear I used my elbow to press a handicapped button which allowed the tainted door to open without me touching the handle. Then I slipped past the ushers without taking a possibly contaminated program and found a seat in the very back row (despite an announcement the host was making at the podium for everyone to please move forward.) I was elated to score an empty row with no one behind me, minimizing the chances of someone sneezing on me. Using my pocket-sized hand cleaner, I rubbed down both arm rests and finally relaxed into my chair. If anyone was studying me, they must have thought I was a compulsive crazy person. It had been like sneaking around a war zone, but finally I had made it to relative safety. After the lecture started and I confirmed none of my immediate neighbors were coughing, I took off my mask and began to relax.
However, my rest was short-lived. About twenty minutes into the presentation, a woman arrived late and asked me if she could sit a few chairs down. I nodded my head yes, I mean what could say? Actually I really need this whole row to myself and you are going to have to squeeze down there with everyone else and make a really big embarrassing scene. No, it was not in me to defend my territory like that. I was just starting to adjust to her presence, when she took out a huge sandwich and started eating. I tried to ignore her, but I kept imagining particles of food flying out of her mouth and landing on me. So finally, to be safe, I put my mask back on. Luckily she didn’t take offense at my mask because she was thoroughly absorbed in a game of cell-phone solitaire.
Then the most horrific thing happened. The speaker, a brilliant Brazilian professor from Georgia Tech, began to have a coughing fit. He apologized, saying he was just getting over being sick. While coughing, he was holding some really cool plastic models of bridges and towers printed from a 3-D printer. He announced he was going pass around the models for each of us to examine. My eyebrows shot up in shock! After coughing on the models, he was going to pass the models around for everybody in the room to touch? And everyone in the room was going to touch the same models, after eating the sandwiches at the reception, and then pass the models along to everyone else? I watched with trepidation as people rubbed the models, pushed and squeezed them, examined them inches away from their noses, and then gave them to the next person. Several times the models came my way, but I just shook my head. No thank you! With my HEPA-mask, I was weird enough so I didn’t have to explain anything.
When the lecture, which was wonderfully interesting, was finally over, I was the second person out the door, carefully slipping through the door with a man in front of me so I didn’t have to touch the door handle. I made a beeline for the street where I found my sister waiting for me. In the safety of her familiar car, I spread hand-cleaner all over my fingers and wrists before taking off my mask. Safety at last.
By now you are probably thinking I’ve become a neurotic clean-freek. Perhaps you are right, but I imagine this state is true of most everyone coming out of BMT. You must forgive us. Here is why: We were going along living our lives, doing what we did – being a Mom or Dad, working as librarian or dental hygienist, bowling, playing golf, studying in school, working out in the gym, or walking our dogs – when we started to feel tired, perhaps a little flu-like, sore, or just a little off. Somehow or another we made our ways to a doctor, and who, seemingly out-of-the-blue, diagnosed us with leukemia or lymphoma or a severe myelodysplastic syndrome. We were told we had only a few months to live unless we started an aggressive chemotherapy or radiation treatment immediately. Each of the hematology patient peers whom I interviewed admitted “I didn’t think I had a disease; the symptoms were hardly anything to write home about.” And yet our world-class doctors definitively agreed our conditions were dire. It was hard to reconcile the shocking conclusion unless we instantly changed our perception of the world as we knew it, so change we did.
What we knew to be true, our own perception of our bodies and our health, was turned on its head overnight. Feeling tired switched from an indication we needed to get more sleep to an indication we needed a blood transfusion and we might die. Fresh air turned from an inspiration to a hazard. Fresh fruits and vegetables changed from healthy food to dangerous carriers of microbes and mold. Family and visitors transformed from welcome companions to germ propagating machines to be treated with caution. And above all, we learned nothing could be relied upon for its outward appearance; the only “truth” seemed to be the cerebral results of the daily blood tests. The “counts” told all and often had very little correlation with how we were feeling. Sore throat? No problem, as long as my counts were going up. Incredible headache? Not worries, my counts were on the rise. But when I was neutropenic (low counts), even if I felt quite well (as I usually did), just being alive seemed to be a cause for extreme concern. Masks were required for everyone, I was not allowed to leave the hospital room, and I was given lots and lots of preventative drugs. In order to accept treatment and follow the seemingly wisest course for survival, I was forced to put my trust in medicine and abandon innate intuition.
This abandonment did not come easily for me who has always stood firmly by my personal instinct, especially in matters of health. My daughter was born at home, despite the worries of others around me and everything went just fine. I steered away from administering antibiotics or ear tubes to my children for ear infections when it seemed unnecessary. And although I believed something was not right with my body at the time of my diagnosis, I had a hard time believing I had acute myeloid leukemia (AML). I certainly did not feel like I was about to die. In my mind death looked like pain and misery, writhing in the hospital, pale clammy skin, bare-bones with no appetite, desperation. This description was not me. I was still going about my life. My life did not look like death.
If a best friend told me her mother had breast cancer, my heart would be sad and want to help her family, just as you all wanted to help me. I would assume her mother would be wanting the best care she could get and accepting the proposed treatment plans without question. It would never in a million years occur to me to say, I don’t believe you. Can the doctor prove it? Your mother doesn’t seem sick. Yet when the patient was me, that was exactly how I felt. I wanted to say to the doctors, I don’t believe you. I don’t feel sick. How do I really trust those invisible test? I don’t see any tumors. I don’t see any x-rays. I think you are making it up.
As my treatments continued to be successful, I was not surprised. Secretly I thought, Of course I am doing well. I didn’t even have a disease. It is not hard to cure someone who is not sick. Maybe you just treated me to make yourselves look good. Now don’t get me wrong. The left side of my brain believes in the science, completely trusts the doctors (I have a degree in chemistry for goodness sake), but I was having an internal argument. This nagging thought of suspicion kept wearing away at me throughout the whole treatment process. A couple of nights ago, as I lay awake in the middle of the night, the familiar mental conflict resurfaced, and this time I was hung up on the fact I had never actually seen my official written diagnosis. My initial biopsy was done in Santa Cruz and sent to an outside pathologist for review. My Santa Cruz doctor was so alarmed by the results I was immediately referred to Stanford and admitted to the hospital within the week and no records of the biopsy were recorded on the Santa Cruz doctor’s medical record website. There was some confusion during the initial days of my first Stanford hospital admission while the doctors waited for the biopsy slides to be mailed to Palo Alto from Southern California, and when the slides finally arrived, reports were not immediately entered into the Stanford database since the tests needed to be repeated and confirmed by Stanford pathologists. Nevertheless the doctors proceeded with treatment, and I took everyone’s word for it that I had AML. (What were my choices?)
However lying in bed the other night, it was just bugging me I had never seen the report, so I sat at my desk at 1:00 am and scrolled through hundreds of test results on the My Health Stanford website looking for a clue. After about ten minutes of searching, I found what I was looking for under the title “Outside Slide Review” dated 6/30/15. In this report was a very detailed description of what the doctors actually saw in my initial bone biopsy slides. Two full paragrpahs described significant amounts of abnormal cells, meticulous entries about types of mutations, and complicated genetic coding information. The official diagnosis was a clear “Acute myeloid leukemia with myelodysplasia-related changes” with the additional note of an abnormal Trisomy 8 karyotype. A quick search on the web confirmed the diagnosis was even more serious than I realized. The part about “myelodysplastic changes” was almost a death sentence – very hard to cure, relapse rate very high, significantly worse prognosis than AML without myelodysplastic changes. I suppose it may have been best I didn’t read the full report until now.
Fast forward six months. Now I am going back into the world and understandably my mindset is “Everything has the potential to be dangerous.” It is not so much a paranoia; I am not actually walking around in shaking fear. Its merely that my recent history has shown uncertainty to be a logical conclusion, and I am logical person. If achy bones and slight fatigue are a signs deadly leukemia than what next? One can only conclude the world is not predictable; our instincts are not necessarily right. But in my heart of hearts I am not really prone to this kind super-cleanliness; I think over time I will naturally revert to my old ways. I mean I used to eat unwashed strawberries and surf at Cowell’s (ranked California’s number 1 most contaminated beach in 2014) almost daily without a second thought.
On Monday I will get preliminary results from my latest biopsy back to confirm there is no disease relapse so far. I must admit my belated review of my initial diagnostic report has cast a little more worry on my prognosis, but not too much. All outward indications suggest I am cancer free. And then back I go, with caution, into the dangerous and dirty world.
Jenny and Cali at Stanford 