Regeneration
I stashed the preloaded syringes of Interferon in our fridge that moaned when the motor kicked in. The drugs were far away from my baby’s organic apple sauce. In 2003, interferon with ribavirin, was the only combination available to treat Hepatitis C. I wanted to be free of the virus that I lived with for over thirty years. I wanted to see my daughter grow up. I wanted to be clean once and for all.
My daughter was born virus free. But the threat of infecting her and my partner continued daily. If I cut my finger while making a meal, I was afraid I infected them. I sterilized, bandaged, and tried to stay calm. But I felt like a contaminate. Not a mother nor an equal partner. I never shared utensils, cups, straws, or double dipped. My toothbrush and razors were hidden. Hiding exhausted me.
I was a vector.
A small table fit in the kitchen with two chairs and a highchair. Earlier that day our daughter learned to throw her spoon on the floor. She laughed with delight as it fell. The window over the sink opened to a neighbor’s weedy back yard with a horrid angry dog tied up on a chain. The same dog that broke loose and charged down the alley and clamped its large teeth into the neck of my friend’s rescue dog. Unprovoked. That’s how it felt when I was told I had Hepatitis C twenty years ago. Like some force attacked me from the inside out determined to kill me without explanation. I wished that dog would disappear. I wished hepatitis C, my past, and all the stupid things I’d done would disappear. Just like that dog — I made mistakes.
The kitchen was sunny and bright. Nothing about our cozy home hinted there were medicines with black box warnings and a list of side effects that I committed to memory. Suicidal and homicidal ideation, depression, bone morrow suppression, diabetes, cardiovascular disease, decrease in vision, and anemia. Birth defects and death to fetus. These drugs rummaged through every cell in the body. This couldn’t be the only treatment. The fridge hummed. It was.
I wanted to run away like my mother said she would do when she was scared.
Where? I’d ask.
Somewhere. She’d say taking a long drag on her Benson and Hedges.
I learned, after years of living on the street addicted to heroin, that somewhere didn’t exist. There was no place to run to or I would have found it.
I was nineteen when the court sent me to a residential rehabilitation program where I lived for two and a half years. I graduated the program and started over. A new life with a clean slate. I got a job, went back to school, and made new friends. I learned how to put a dress on lay-away at Gemco. But I carried the virus without knowing it for all those years. Until the virus came knocking at my door like Ebenezer Scrouge collecting an old debt.
It’s been twenty years since being diagnosed. I promised my partner I’d get on treatment after our daughter was born. But it won’t be easy to take these dangerous medications when I have so much to lose.
Interferon required an injection once a week for a year. Needles came with bad memories. The idea of having to inject myself pierced through the euphoria of being a new mother. Not knowing if the meds would cure me or kill me or leave me somewhere in between with aplastic anemia or neutropenia, put me in a state of panic.
That evening, I returned to the kitchen after putting our baby to bed. I unwrapped the first chilled syringe pre-loaded with a single dose of Interferon. The ocean breeze blew in from the damp night sky. My partner sat with me. Encouraged me. Tears flowed. I had to. But I couldn’t. I did. But it almost broke me.
I lifted my night shirt and pinched the skin in my lower abdomen. With a trembling hand I pushed the needle into my flesh. My hands never used to shake when I held a needle. I was the only one with the steady hand and steely nerves to shoot up Lindy in her neck. I was that dog. My partner would never understand me. But he tried to calm me down. Said I was doing good. It was almost over. I pushed the medicine in.
Treatment continued along with monthly blood draws to check my viral load. My doctor was concerned that I was not responding. By the end of the third month my viral load increased and he stopped treatment along with a daily supply of hope.
The failed attempt sent me into a state of high anxiety. Fear ran ahead of every decision until I couldn’t do anything more than the simplest of things to survive. I stopped driving on freeways. Something I’d done for decades without a second thought. But now the speeding cars overwhelmed me. I was not in control. I had no agency or power.
My confidence — the little that I mustered over twenty years off drugs, vanished. My partner didn’t understand catastrophic anticipatory fear. I needed predictability. Routine. Safety. Our plans and our lives were halted. He was just as unhappy as I was.
With antidepressants and therapy, my confidence returned in small steps. It took several years to build it back. I drove with supportive friends and pushed myself until the fear was not in control of me anymore. A part of me restored. The liberation felt better than any drug I’d ever taken.
My daughter, now thirteen, and I took road trips to Reno, San Francisco, and Death Valley. We stopped to look at stars, snakes winding off the road, and desert flowers in bloom. Life revived despite the virus that lingered like a shadow.
Over the next decade I hoped for a treatment and tracked the disease with liver spleen scans, ultrasounds, and tears. In my late forties, my immune system was not as strong, and my viral load inched upward. The pain in my liver, nauseating fatigue, vertigo, and brain fog increased. My daughter asked why I was tired all the time. My partner stopped asking.
A second biopsy showed hepatomegaly (enlarged liver) and increased fibrosis. The virus turned my supple hepatic cells into a fibrous old sponge. The biopsy also found unidentified unknown fragments. My doctor confirmed that it was leftover ‘stuff’ from the time I used heroin. Thirty years ago, my poor liver didn’t know where to put the unidentifiable fragments, so my smart little organ tucked it away in its velvety connective tissue. A loyal and earnest organ. The organ that cleansed my blood. The purifier. I needed to get on treatment before I went into cirrhosis.
If you catch it in time, the liver regenerates. In our support group I met a father who donated half his liver to his son. It grew back into a fully functioning organ in three weeks. But hepatitis C (HCV) was a silent killer. Most people didn’t know they were sick until they were cirrhotic. Alcohol accelerated liver failure. Luckily, I stopped drinking when I was diagnosed thirty years ago. A challenge when the Italian family sipped Lemoncello on sweltering summer days.
“How much time do I have?” I asked my hepatologist.
“I can’t say. But the disease is advancing and that puts you at a higher risk of liver cancer.” He replied.
I filed liver cancer in the back of my brain. A problem that I’d deal with if it came up. I loved my liver doctor. His official title was hepatologist. He led monthly support groups for the HCV community that included the latest treatment options and outcomes.
I became an avid researcher and attended symposiums with his team. I studied reports and current data in the medical library at University of California, Irvine. My alma mater. While I waited for new treatment options, life continued like a bumpy off-road ride. I hung on.
I taught art, volunteered in my daughter’s classroom, and walked the dog along the beach. Traveled to Italy. Helped new patients who were confused and scared. But vertigo and nausea struck if I overdid it. The ground rippled and walls swayed back and forth. I staggered to bed like I was drunk and sunk into the mattress like a marble statue. Unable to move a finger. My head felt like a bowling ball. I dreaded those days that came more often as I aged. I didn’t know it then, but a radical new treatment was on the horizon.
My daughter was in middle school when new studies were being done with Direct Acting Antiviral medications. These drugs were initially used for HIV treatment and considered off-label, not yet approved, to treat HCV. Several combinations of drugs were in the pipeline. The first combination was Olysio and Sovaldi introduced by Gilead and Johnson and Johnson.
Sovaldi was a polymerase inhibitor and Olysio was a protease inhibitor. These clever drugs sneaked through the digestive system wearing a protective cloak. When they reached the liver, the cloak was removed by enzymes which allowed the antiviral to block the replication site on the virus. It left the virus infertile. Each day HCV made billions of copies of itself. How the drugs were able to stop the rapid reproduction of the virus was beyond my imagination.
But the cost for the drugs was one hundred and seventy thousand dollars ($170,000.00) for the three-month treatment. Insurance would not cover off-label medication. I appealed three times. Three times they sent the identical cold denial letter with a different date at the top.
Meanwhile the pressure to make these drugs available to the public increased. My hepatologist put me in touch with a patient assistance program sponsored by Johnson and Johnson and Gilead that offered the drugs for free to patients that qualified.
I applied right away before funding ran out or somebody at the top decided to cut the program. After a few months of complicated paperwork, they approved me.
The drugs were delivered to our home. I returned from dropping our daughter off at a friend’s house when I opened the package. Two bottles. One month supply. No needles or black box warnings. It did not seem real. How could a pill stop a tenacious virus?
That night I swallowed the tablets with a glass of purified water. My partner stayed up with me to make sure I didn’t have an allergic reaction. I continued taking the medication daily. My viral load dropped. I thought the battle would be painful, bloody, and bring me to death’s bed but by the third month the virus was undetectable, and I felt fine.
It took a while to trust that the virus was permanently gone. We repeated blood tests to measure the virus every three months. With every follow up, I feared the virus returned. But after a year I was still negative, and my doctor congratulated me. A sustained response meant I was probably ‘cured’. The first time I’d heard that word. Cured. This time I believed it.
I resurrected from the ashes like the Phoenix bird. My partner assumed I would make huge changes. Carpe-diem on steroids. Travel to Costa Rica, Africa, or help the elephants in Thailand. Do all the things I’d talked about for years. But something changed.
I poured a glass of bubbly Prosecco wine. Tossed the Capellini pasta covered in a light tomato and basil sauce. Sprinkled Pecorino Romano cheese on top. Hundreds of fragrant jasmine flowers fluttered outside the kitchen window in various stages of life. Buds and withered petals. Their sweet scent mixed with the warm summer air.
I was where I wanted to be. Clean.
