Every once in a while, as a teacher, you’re blessed with a student who touches your heart, a student with intelligence, an earnest desire to learn, a story to tell, some panache and a dash of courage. Julie Jacobson is one such. An Ahtna Athabaskan native from the village of Tazlina in the Copper River Basin of Alaska, now living on a ranch in Colorado with her family, Julie Jacobson has a great story: growing up in a culture with one foot in a traditional past and another, somewhat shakily, in the modern present. She wanted to write about her self and her people and preserve what was vanishing. But last fall our semester together took a twist, as you will soon see, and a second great subject intruded, not one you would ever look for. What Julie does in this essay, stripped down and simple, a list-essay in form and inspiration, is deliver the experience — the terror, the waiting, the struggle for certainty, the people who helped and the people who didn’t, the utterly human moment when cancer upends life and nothing is ever ordinary again — you can’t ask for more.
In April, I noticed swelling in my right groin. It was off and on painful and puffy in comparison to my left side. I had insurance and no reason not to check it out. I went to the doctor in the nearby college town of Durango. To save me having to pay my deductible, the general practitioner at the private practice I visited recommended and referred me to the Northern Navajo Medical Center for a CT scan to check for appendicitis. I sat in the NNMC emergency room for two hours. After the scan and evaluation, I was given over-the counter-drugs and told it could be appendicitis, but the pain and swelling weren’t severe enough to point to surgery yet. Later that week, the pain subsided and the swelling went down. I didn’t worry about it.
I went in for my annual exam in August. After reviewing my mammogram, an MRI and a needle biopsy, my gynecologist said she thought I had might have a wide-spread case of ductal carcinoma that could indicate the need for a bilateral mastectomy. I had 27 stars of calcium in my breasts. When I looked over her shoulder, she pointed out what looked like bright little white spots peppered in the grey fibrous web of two dimensional tissue on the screen. “You certainly have a lot going on in here,” she said, tapping the screen – “they are stars.” Stars? I asked, thinking of gravity and falling and white hot plasma and constellations – with life all their own. “It isn’t definitive yet, so let’s just watch it.” With the attention on breast tissue changes, my right groin lump slipped out of focus, shrugged off as a hernia and not appendicitis. I couldn’t remember straining or hurting myself, but the doctor said – so it was a hernia. My lump stayed, undisturbed and untested, and I was more careful about what I lifted until I could schedule surgery between middle school football games, ranching duties, grad school assignments, and household responsibilities.
I thought, breast cancer? Maybe, but the doctors aren’t sure. This part of a diagnosis process is called watch and wait. I stared at the ceiling at night while everyone slept. The words, “Let’s look again in three months” and “What if?” ran through my head and kept me from sleep.
I thought of the worst, planned my way into and out of the doom and gloom. I planned for a beautiful halter tattoo to replace my bra. I even sketched it out and thought about how I would be free from sports bras forever. I thought I would ride my horses more often.
I didn’t tell my husband or my sons.
In September, the right groin lump swelled again and became painful and I made plans to have a pre-surgical evaluation when the month slowed down. I went on a river trip down the Colorado River with 17 other women writers, thinking I might have breast cancer, and wanting to really live and experience and write.
On the second to last day of a week-long trip, I jumped from the raft at Horsethief Canyon and rode alone and unguarded through class II rapids in my life vest, fully clothed and holding onto my sunglasses and a cinched-down sun hat. Cold muddy water washed over my head and I swallowed the earth in that minute under water. When I emerged on the other side of the rapids feet and head up, I watched black boulders rush by on the right and left of me, thinking, I’ve really lived now. When the other women pulled me into the boat and congratulated me for the solo ride, with a wide grin I said, “I’d do it again. Nothing can take this away from me.”
I dared myself to be scared, to be brave, and to be crazy.
I cried in front of strangers and made friends.
When the trip was over, I took my time going home on the nine-hour drive from Moab, Utah. I didn’t listen to music or a book. I just drove in silence and thought about my family and how we would get through this breast cancer threat.
That week, heavy rains doused the Rockies and some Colorado rivers washed away whole towns and I drove past them and thought, I might have breast cancer. People lost everything they owned. I thought, I could have breast cancer. People had raw sewage in their front yards and couldn’t drink their well water. I thought, the doctor said I had ductal carcinoma.
The same week, Katie — one of my best friends, had a beautiful and healthy baby boy. She had a perfect life on the outside, but I knew she had struggled growing up with family money and heady expectations. Katie struggled to have the perfect career, and the perfect marriage, and she had waited to get pregnant until the timing was perfect. Perfect or not, she keeps her misery to herself. Katie is the kindest and most generous woman I know. She deserves to be happy. I didn’t want to dampen her celebration. I didn’t visit her (though I’d planned to before my doctor’s revelation) — knowing that I would not be able to keep my secret from her.
At home, after my rafting trip, I woke up every morning, raised my arms and imagined that I felt the tiny stars of calcium and cancer. I wrote about them by nightlight while my family slept.
I looked up everything written in every medical website I could find in the English-speaking world about cancer treatments. I made a Pinterest board with my cryptic notes typed under articles or medical contacts.
I wrote a list about things I wanted to make sure I told my children about.
I found a blue sharpie and put twenty-seven dots on my breasts. I scrubbed the dots off in the shower the next day.
Somehow another week passed.
The weekend before I told my family, I watched my tough and tender twelve and a half-year old son play in a middle school football game and wondered if it would be the last time he would be carefree.
I woke at 3:30 in the morning and wrote a list about what I was afraid of.
October arrived. I vowed to get healthier than I’d ever been, but the same week after I ordered a spinning bike, the lump in my right groin swelled and throbbed again. Now it was the size of a big fat lima bean. I let it sit for two weeks, palpating it every day before I got out of bed, integrating my ad hoc lump assessments into my daily breast exam routine. My immediate grad school writing assignments completed, I thought I should get the hernia operated on, so I went to my local general practice physician. He talked about Obamacare and told me that foreigners were taking over our country. He said, “People like us,” and “White people are a minority now,” and “People on entitlement programs should be drug tested.” I listened patiently while he gloved up. I told him the lump had gotten bigger and my gynecologist said that the hernia could get hard and become troublesome. He had me lay back and asked how long it had been there. He felt the margins, and got a cold steel measuring device from the counter. “2.5 x 2 centimeters. That is not a hernia,” he announced and then in still in his purple nitrile gloves he tapped the counter, writing illegible notes with a ball point pen. He quietly said I needed an MRI or a CT scan with contrast but the hardness of the mass was not a good sign. I didn’t comprehend what he said until later. I was still irritated over his political rant so I told the good doctor I was Native American and he got even quieter.
When I went to the hospital to schedule my imaging appointment, the Hispanic woman at the appointment desk said I couldn’t be seen without first telling her my race and ethnicity. I balked and told her that was illegal as I handed her my private insurance card and a check for my co-pay. She said she had to have my answers or the system wouldn’t let me progress through to schedule my screening. I left without an appointment. I called it in to her after debating how important my rights were versus getting my test.
A week later, I had the first CT scan with contrast at 9:00 AM on my 45th birthday.
I made small talk with Eric, the traveling x-ray technician from Tennessee. He was six foot eight inches tall, nappy haired, kind, and reminded me of a big teddy bear. When it came time for him to insert the needle for the IV, he said, “I’ve never done this before, but people say I’m pretty good at it.” Laying on the CT table as he thumped my vein for the IV, my left hand was very near his crotch and I said, “We are not going to hurt each other — are we?” It didn’t hurt, but I didn’t have an epidural when my children were born either. Eric injected the contrast dye into my IV prepped arm for the CT scan. When the rushing warm sensation of the dye ran through my veins I thought I wet myself. We both laughed.
Once I was unhooked and dismissed, Eric extended his massive hand and gently squeezed mine, telling me to think positive. Eric stayed to clean up the room when I told the other imaging technicians that I paid $2,200 for the test and I wanted to see the results. They looked at each other, said they couldn’t show me. I’d have to wait for the report and my doctor could show me the images then. I stood with my hand on my hip in the doorway and wore my best cranky mother look and one of them cleared his throat and then pulled them up on the 64 slice CT computer screen. I saw a glowing rainbow of colors with a blue aura around the lump in my groin. Everything else was grey.
A woman I didn’t know hugged me in the bathroom.
I stopped at the hospital lab and had blood drawn for a complete blood count and some other tubes for tests I don’t remember the names of.
I left my favorite scarf in the waiting room.
I lost my dog-eared Harry Middleton book somewhere.
I sobbed in the arms of strangers in the hallway.
I drove myself home and wrote a letter to my youngest son about the day he was born.
One day ran into the next. I did everyday things on auto pilot. I rescheduled everything that required thought or enthusiasm.
Five days after my imaging appointment, and probably my last shower, I answered the door bra-less in a worn black concert tee-shirt and snoopy fuzzy pajama bottoms. While pushing my dogs out of the way of the door, I realized I had two different kinds of house shoes on. At the time, I didn’t care. The familiar UPS man brought an Amazon package up the stairs and eyed me cautiously, like I might pull a bloody kitchen knife out of my sagging elastic waistband. He handed the package over careful not to touch my hand and pushed off the steps – springing quickly to his truck saying, “Say Hi to Brent.”
I cleaned myself up.
My husband and I went to the grocery store that evening and my doctor called right as I put my pickup in park. I answered my cell phone and with a kiss I waved my husband off to field the call by myself. My doctor told me that the radiologist had confirmed his suspicions and he thought that I had some form of lymphoma. He asked if I knew someone I wanted to see for it, I said no, and he said he would send an order for the surgery and biopsy.
My husband returned with my list checked off and bags with organic coconut milk, orange juice, apples and cereal poking through the plastic. I told him what the doctor said while we put groceries in the back seat. He cried and I didn’t. I told him that I would be fine. Lymphoma is 89% survivable and I’m tough and too mean to die this young. He wasn’t even mad that I hadn’t told him earlier. His mother has stage four lung cancer. It has been an awful year watching her fight for her life.
I couldn’t sleep with the words “unusual”, “abnormal”, “mass” and finally, “cancerous” swimming through my subconscious. I read Winter in the Blood by nightlight, and listened to The Alchemist on mp3 at the same time. When I finished those, I read poetry by William Pitt Root and listened to The Round House.
A week after my CT scan, I got shingles. Bumpy red skin stretched over my torso and my shingles ached and burned at the same time. I thought I might die during the night when they broke open, but then I realized that dying from shingles would be weak and embarrassing.
I hated fucking happy people.
I resented people who have time to paint their fingernails or get their eye makeup perfect or talk about split ends.
I still had to water and feed calves, horses, bulls, cats, and dogs on our ranch. Cows looked at me with sad eyes. I’m sure they knew. When I looked at myself in the mirror, I decided that my hair was beautiful grey. I didn’t think I looked like someone with cancer. Maybe a little too plump. I don’t look sick. I thought I should get cleaned up and make a boudoir photo appointment so I could prove to myself that I looked alluring at one point in my life.
I asked myself, do I need a will? What is a living will?
I heard an NPR personality say, “Don’t talk about your health. Nobody cares. Don’t talk about how you slept. Nobody cares.”
I thought: what if eating sugar is feeding my cancer? Everything is sugar. I don’t want to change what I eat. I hate tofu. The cancer survivor books say, No animal proteins and No sugar. I think I’d rather die. Why me? How do people get through this? Why are there so many books about breast cancer and so little about how to get medical professionals to care? How come I can’t find a patient navigator that doesn’t work for some insurance company or some treatment center? Does my breath smell bad? I don’t want to rot. Why do I still have to do everything as if I were healthy and normal? Why can’t I just fold up shop and drink? Don’t I have a license for that? I can’t. Why am I still taking Immune Option supplements? Should I take more? How about more orange juice? Wait. I can’t have sugar. Is orange juice sugar? What about un-sweetened apple juice? What about carrot juice? One website says to cut out all sugars and adopt a vegan diet. Another says to cut all carbohydrates. What the hell am I supposed to eat?
I waited impatiently for the next step of surgery and biopsy. I checked my phone no less than ten times an hour. I know. I counted for eight hours. For seven days.
I ordered two hundred dollars’ worth of scented bath soap from QVC.
I read five books on surviving cancer.
I thought, I don’t want to explain this to one more person.
I think I liked it better before everyone knew. My mother-in-law asked if I wanted to explain it to her daughter, my sister-in-law. I said, “No, I don’t. I don’t even talk to her so why would I want to explain my health situation to her. I don’t give a god damn about what she cares about. She can light a thousand fucking candles and pray to the Greek God of Life or Buddha or Jesus Christ, and I won’t know or care about it. Tell her not to waste her time. There is no god. There is no one looking down on us to guide us and help us make good decisions, let alone protect us.” She cried. I went on. “If I were a Christian, I would be really pissed off right now. Furious. That’s what I’d be. How can there be a god who knows what I’m going through and yet, with the powers he/they supposedly have, still allow suffering?” I said this to a lovely bald woman with stage four lung cancer.
After I ranted, I thought, I am an asshole. What is wrong with me? I have nothing but rogue cells, which can be fought with many kinds of treatment. I have nothing really. Look at how people suffer around the world. I have nothing to gripe about. I don’t have leprosy. I don’t have a rapidly growing flesh-eating bacteria. I’m not living in fear of being raped by multiple strangers on a bus in India. I don’t have to put on a flack vest to be able to go to the mailbox. I don’t have to decide which child gets food today. I don’t live on the streets. I don’t have anything to gripe about. Really. I just have a lump.
What caused the lump? I investigated. I created Pinterest boards to organize my findings. According to lymphomainfo.net, there are a few things that are known to cause lymphoma. One is radiation and exposure to benzene. Shit. I’ve taken a lot of x-rays in a dental office. I don’t know about benzene exposure. The second is using hair dye before the 80’s. Did I dye my hair before the 80’s? No. In the 90’s. Yes. Another thing that predisposes a person for lymphoma is living in an agricultural area that has a high use of pesticides and herbicides? Have I done that? Yes, since 2008.
I thought: I hate farmers. I want to bazooka fertilizer tanks. I could put camo on and drive around blowing up fertilizer trucks. I could take a stand. Blow up some spray airplanes. Sure, I’d go to jail, but it would draw attention to what they have done to the earth and me. Maybe it wasn’t them. Maybe it is just a combination of black jelly beans and sugared orange slices. Maybe it is too much green or lemongrass tea. Maybe it is from that time I accidentally gave myself a shot of black leg vaccine in my finger? Or how about when I dripped Ivomec, the liquid cattle dewormer, on myself while processing cows. Maybe it is just a rogue cell that moved locations because I stood in one position too long?
I watched the same movies over and over again because I couldn’t remember the ending or the beginning or the middle.
I wrote a list about Native stories that are not written down yet.
I cried in the lap of my very sick mother-in-law and said I was sorry.
I stopped eating all dairy. I bought tofu bacon. I juiced 35 pounds of carrots.
I bought $205 dollars in supplements from the health food store.
I tried acupuncture for the first time. I sat in an infrared sauna. I tried to meditate.
I cried on the massage table when my masseuse friend just touched my arm.
I got tired of waiting for calls and phoned my doctor’s office in the morning, at noon and again before they closed in for that Thursday evening to ask about the schedule for my surgery. When I was told that the doctor was waiting on the radiologist’s recommendations — I lost it. I lectured the nurse on the phone about how it wasn’t fair that I had to track this down a week later, and that if I was the doctor’s sister, I would have a scheduled date for surgery already. She listened patiently, but she didn’t help me get a call back.
I called the hospital, got transferred twice until I was sent to hold by the imaging department. Five minutes later, when a female technician picked up my call, I calmly asked for the name of the radiologist who had read my CT scan. She gave it to me. I asked for the back line number for his office. She said she couldn’t give that out. I said, “I know you have people you care about, right? So do I. I have two teenage boys, and a husband who depend on me. I have been waiting for a week after this guy to sign a paper after he said he thinks I have cancer.” She gave me the number.
I left many messages on doctor’s voice mails.
I took a Tylenol PM and went to sleep at 7PM. I slept without dreaming.
The next morning, a Friday, after my family left for school and work, I took a shower and beat on the wall with my fists, screaming a primal noise until my throat was raw. In my mind, it sounded like “I just want somebody to care!”
“I just need somebody to care” became my mantra. I said it to the dogs. I said it to my horse when I lay on his broad back, my face buried in his mane while he munched alfalfa. I screamed it from my pickup’s open windows as I drove too fast down dirt roads.
I sat in front of a blank computer screen and typed angry words that made no sense when I read them back. I backspaced and tried again. Coherent thoughts slipped through me before I could catch them with my fingertips on the keyboard. Inspirational words like Neil Gaiman’s “Make good art,” and Mahatma Gandhi’s “The best way to find yourself is in the service of others,” were written on sticky notes pasted on my desk calendar, but nothing came to me except lists of things I would miss if I died, or what I wanted to be sure to tell my sons, or things I still wanted accomplish, or places I wanted to travel to.
At 3:30 on that Friday afternoon — I couldn’t wait another minute. I dialed 411 and asked for a phone number for Doctor Heartless. It was an office message machine. I sat at my computer, got online, and looked up his Facebook account, health grades reviews, and finally, People Search. I typed in what I knew about the man and for $39.95, I got his phone number, tax records, email, address, what his house is worth, household family members, his genealogy, and what cars are registered in his name. I called the unlisted Doctor Heartless home phone number. When his wife answered the phone I said that I was sorry I had called her home number, but I couldn’t reach Doctor Heartless at his office. In a calm and controlled voice I said, “I just need somebody to care.” His wife was patient and kind and let me continue. I told her “I am somebody’s wife. I am somebody’s mother. I am somebody’s sister. Your husband wrote on report – on a piece of paper that he thought I had cancer, over a week ago. He said I should have further testing, but he has yet to sign off on the order that I need to schedule that next step. I’m sorry to bother you, but I just need somebody to care enough to help me.” I felt like I was going to cry, but didn’t. Mrs. Doctor Heartless got on her cell phone and I heard her call her husband’s office and tell the receptionist that as soon as Doctor Heartless was out of the surgical procedure he was currently in, he was to call her. Mrs. Doctor Heartless said she was sorry and that she cared. Half an hour later, the receptionist called me and said that Doctor Heartless had signed my paperwork and the hospital would call me to schedule the procedure. Ten minutes after that, the surgical scheduling desk at Saint Anthony’s Hospital called to set up an appointment for the following Tuesday.
I curled around my big Border collie dog on the couch, wetting his fur with my tears.
I made dinner. I cleaned house. I picked my son up from school. I took pictures of sunsets and sunrises. I stroked purring barn cats on the porch. I went to the bank. I shopped for groceries. I went to the post office. I helped my son with a social studies project on Idaho. I lay in bed, sleeplessly counting the word “I” in terrible essays I’d written in the last ten days.
I went to bed. I got up. I drank coffee and repeated necessities until it was finally Tuesday. I drove myself to the hospital. I made my husband take our son to the Nature and Science Museum instead of hanging out in the surgical waiting room. I answered a hundred questions about insurance, my health history, and my knowledge of the process. I sat alone cross-legged in a back-tie open gown in a freezing pre-op room while waiting for the doctor — reading Notes Home from a Prodigal Son.
I watched the ultrasound monitor when the needle would not pierce my lump. I saw my lifeblood pumping below it rhythmically in my femoral artery. I saw the concerned faces of doctors and six technicians or nurses in the room. I felt sick to my stomach. I tried to make small talk about the weather change coming. When the needle and pressure from the clipping biopsy instrument hurt me, I stayed still. And because I was drunk on IV sedation, I told the room full of medical professionals I was tough – that I had ridden bulls and bareback horses, and that I’d repelled out of helicopters, and that I had fought for Native American children’s rights with congressmen in Washington, D.C., that I had my children without anesthesia. Then I let silent tears run down my cheeks and into my hair.
Back in the freezing room, floating above my body, I heard the interventionist radiologist tell me that he couldn’t draw a sample by needle so he had to cut snips out of the mass and as a consequence, it may be up to three days before the results came back from the pathologist and were reported to my local physician. I heard him say he didn’t know if it was benign or malignant and that removing the node may be the only way to know for certain.
When my husband picked me up, I left the hospital still feeling two glasses of wine woozy. We went to Katie’s house in Denver and I held her baby. She cried about my situation. I told her I would be fine, because I’m too stubborn and mean to die young. We laughed. I slept on the two and a half hour drive home.
The day after my biopsy, I joined my family and rode my horse to gather cattle for fall vaccinations and pregnancy checking.
For the next few days, I didn’t talk to anyone on the phone. My voice mail was full, and my husband fielded all calls from family and friends.
The morning of the third day after the biopsy, I called my local office and they still had not received the results. I called the medical records office at the hospital to check to see if the results were in my file. The woman said she could not look in my file without a request faxed in from my provider. I called my local physician’s office back, and gave her the fax number the woman had supplied me. Four hours later, the local physician’s office received the report. Two hours after that, I called my local physician’s office, again. I said to the good and patient receptionist, “I can’t go all weekend with this information just sitting on somebody’s desk. I just need somebody to care.” She said she couldn’t let me know what it said, but she would leave a note for the doctor to call me, but warned that his call may not come until the next day. I told her to write me in his book for the earliest appointment, and that I would not wait for a call from him again.
I wrote a list of my favorite things and then wrote another list of the stupid things I’d done in my life and one more about all the things I was thankful for. Then I slept, nestled up next to my husband’s back from 2-6 AM.
When I went to the local provider’s office the next day, I had to wait two hours after my appointment time to be seen because of an emergency. I waited patiently. If it were me or my family in the E.R. I’d want him to prioritize and be there.
When the general practitioner came in, he looked sheepish. He showed me all of the yellow message sticky notes in my chart from my numerous phone calls as he threw them in the trash. I told him, “You know, I know you are not married and don’t have children, and I know you have devoted your life to your profession, but you should have some sympathy for people you care for. It is crazy to tell someone you think they have cancer and then make them wait needlessly for the next step or a call back. That is unprofessional and just plain mean.” He looked at my file intently, appearing to ignore my comments. He said, “I’m surprised. The report says that the biopsy sample was not malignant. The mass has endometrial cells relocated in the sentinel nodes of your right groin lymphatic system. You still will need more tests to find out if there are more masses growing elsewhere. You will probably need radiation to shrink it, and possibly surgery to remove the lump so they can check for cancer, maybe a hysterectomy and maybe hormone therapy and chemo if those cells are found elsewhere. They could cause a stroke if they are in your brain or lungs or other organs and break free or create a blockage, so you cannot let this wait. I’d see a gynecologist, if I were you.” What he said after that bounced off of me like a hard rain, like what I had said to him. I stopped at the reception desk and waited for a copy of the report while I wrote a check for my co-pay.
That night, my family and I went out to eat with friends and for the first time since the ordeal began, I told the whole story. I didn’t feel like drinking, since I was still off of sugar and thinking about being as healthy as I could be. My husband held my hand all night and on the way home.
At two in the morning, I couldn’t sleep so I got up. By nightlight, I wrote a list of people I should say thank you to and another detailing ways I could promote patient self-advocacy.
Thirty one days after my initial and incorrect cancer diagnosis, I started radiation therapy to fight off migrating rogue endometrial cells. I took my first dose with grit teeth and a grateful smile on my face.
—J. M. Jacobson
J. M. Jacobson is studying creative nonfiction in the MFA writing program at Vermont College of Fine Arts. She is an Alaska Native from the Ahtna Athabaskan Indian village of Tazlina (Tez-len-Na). Officially a “Lower 48er” since 2005, she and her family raise cattle, horses, and cattle dogs on the high plains of eastern Colorado.