by Karen Najarian
In my last blog I alluded to my visit to a psyche ward just before Thanksgiving. I’ve been meaning to write about it but even with cancer, life is busy. So here I am.
On the smoky Sunday morning of September 20, I logged in to the John Muir Health Portal and read the results of my September 16 PET scan. It had been smoky since the 12,000 lightning strikes of August 16 that lit 650 wildfires and ended up burning four percent of the state of California. Some 11 am mornings looked like 5 pm. Sometimes the sky was so orange, I felt like I was on another planet. I’d been aching worse since around that time – suspecting and afraid of my own internal natural disaster. On the PET scan report I saw the word “progression” and my cancer marker was elevated, too. Damn. I knew that meant that the IBrance drug had stopped working and the tumors were growing again.
The next day I was sitting in the exam room for my monthly doctor’s appointment. I always know when my doc is approaching. I hear the rapid no nonsense click, click, click of her heels. Holding my chart against her forehead, she burst through the door mouthing a humungous “FUUUUCK!” I learned in previous appointments that her sons have asked her to clean up her language. I love my doc. She’s tall, slim, bright, beautiful, and passionate. As for me, she can yell FUCK about my cancer progression anytime.
She immediately rolled into gear. “Well, we got six months out of the IBrance.” My head sank. So, we’re now counting my longevity in six month increments instead of decades, I thought. But she quickly moved on with a new plan, “We’re going to put you on Xeloda. But, unlike IBrance, it’s a chemo.” IBrance is a targeted drug – only kills cells with a CDK 4-6 receptor on its membrane. Don’t ask. You’d need a recent degree in biochemistry to understand. Just know that it only targets certain cells, not every cell, like chemo.
Chemo drugs work to inhibit DNA replication. Cancer cells have run-away replication so in the presence of Xeloda, every time they try to divide, they die. But a lot of other cells replicate, too. Think fingernails, GI track lining, skin. The package insert reads that those dispensing it should only touch the pills with gloves. Four of these would go into my mouth twice a day. “I’ll lose my hair?” No.” Well, at least that.
You can’t just buy these cancer drugs at CVS. They come from one of four specialty pharmacies in the country. Because these drugs are so lifesaving, you’d think they’d be right on it and ship them ASAP. No. You gotta be a squeaky wheel. On the phone, “What is keeping my medication from being shipped (from Ohio!)?” Well, it’s marked urgent here on someone’s desk,” – marked urgent only due to me ragging on them on a previous call. “Whose desk is it on? Where are they? Can you bring this to their attention and ship it out? My life depends on these.” I’ve learned to advocate for myself.
The pills arrived in my mailbox October first and a new set of side effects began: GI disturbances, aches, tiredness, burning eyes and blurry vision. While losing my fingerprints, I was trying mightily to maintain possession of my core identity. On October ninth, the soles of my feet burned when they hit the floor upon arising from bed. My doc had warned me of possible “hand and foot syndrome” where the soles of your feet and the palms of your hands can burn with redness, peel, crack, and bleed. I thought it odd that a drug could target such specific body parts. It turns out that the pressure of standing and walking on your feet and gripping things with your hands produces a lot of pressure on weakened capillaries and the chemo poison leaks out into the tissues causing injury and inflammation. Also, on chemo, you don’t heal well. Small boo-boos from gardening can take three weeks to close over. I’m a hiker. I guess that was a good thing because I had hard, thick, hiker calluses to slough off during the peeling rather than city-soft pink skin. But, meanwhile, walking at all grew to feel like stepping on hot razor blades.
The other most bothersome side effect was burning eyes and blurry vision, to the point I could barely see. Apparently, a lot of chemo drugs create dry eyes and this can create a film over the eyes so that the world looks like it’s viewed through wax paper.
My Xeloda Facebook group has been invaluable for camaraderie and support and for solutions to problems that my doc merely shrugs at. With them, I’ve discovered 40% Urea Cream to moisturize my hands and feet and freezer gel socks to ease the burning and inflammation.
I remember being in an in-person support group meeting twenty years ago. Mostly I expressed my annoyance at this cosmic “mistake.” I had things to do and places to go and this “bump in the road” was a pain in the ass. “I want what she’s having,” one responded. Then suddenly a scarf-swaddled head poked in through the door asking if this was the stage four support group. The room went instantly silent, heads dropped, hearts stopped, and eyes widened. This unsuspecting lady was the embodiment of what we all feared the most. The hospital group moderator motioned her down the hall and we all breathed a deep sigh of relief, except for the lingering fear that we might someday be her.
My home became littered with all the different brands of eye drops that the Facebook group suggested. And it sounded like at least one of them solved everyone’s problem, except for mine. So, toward the end of my two weeks on (one week off) Xeloda regimen, I was probably legally blind, only minimally able to walk, aching all over, believing this would be my life until the drug finally failed, and I’d die. Between that and the prospect of not seeing my kids for Thanksgiving due to Covid, I’d been crying for days. I was falling over the waterfall again.
On the Monday before Thanksgiving, a nurse called from the specialty pharmacy in Ohio where I’d been getting the Xeloda. Unaccustomed to getting a nurse’s call from a pharmacy, I was intrigued. She asked about side effects. I rattled them off. She had no solutions. “Do you want to speak with a pharmacist?” “No. Been there done that.” The pharmacist had told me in a previous call that cancer treatment was a balance: A balance between killing the cancer and killing me. “Kinda like the counterbalance of feeding the birds without feeding the rats,” I thought. Then she started asking about my mood and I fell apart. “I can’t stop crying.” “Are you thinking of hurting yourself?” “Well, I’ve thought of driving my car off a cliff. I’m not going to do it but it would solve a lot of my problems.” I knew what I was saying, I knew she’d have to act on it. I knew I wanted an anti-depressant and my Xeloda dose lowered, as my doc had previously suggested to my protests, “I don’t want to croak!” Later, I’d checked with my Facebook group and seen that a lot of gals had their doses lowered to make the side effects tolerable and it was still effective against the cancer. I had a doctor’s appointment for a bone growth shot the next day. I thought I’d address these things then. The nurse asked, “Is it ok if I tell your doctor how you feel?’ Resigned, I replied, “Yes.”
The next day was the Tuesday before Thanksgiving. My appointment was for 10:30. I arrived on time in the cancer center parking lot, sat in the driver’s seat and sobbed: sobbed for the pain and frustration of the side effects I had to trade for longevity, sobbed for missing Thanksgiving with family, sobbed for my shortened life. Now, late for my appointment, my phone rang. It was my doc’s office. I was now fifteen minutes late. I thought they were wondering where I was. “Hello?” “Karen, we had a call from a nurse, and we’re concerned.” “I’m in the parking lot here for my Xgeva shot and I can’t stop crying.” “Well, come on in.”
With my nose running behind my Covid mask and tears wetting my face, I dragged myself through the thick double glass doors. Twenty years ago I hated this place. I hated that we had to have a whole center dedicated to cancer. “What were we doing to ourselves and the planet that we needed a place like this?” But, I loved the people inside and still do. Nurse Nancy, who always put me in the infusion room with the big Half Dome picture, is still there twenty years later.
Bypassing the waiting area, they ushered my sorry ass into an exam room. I sat in the chair, put my head against the wall and wailed. Through the sobs, I took my shoes and socks off to show the peeling, cherry-red soles of my feet. I thought, “This is going to be my life until I die.” Keeping my eyes closed eased the burning a bit. The click, click, click of my doctor’s heels signaled her arrival. Sitting on the rolling stool and leaning in, “Karen, what’s wrong!?” she implored. “I can’t see and I can’t walk. I’m a photographer, sewer, hiker, and writer and I can’t see and I can’t walk!” More wails. “I just want to reduce my dose and get an antidepressant.” The nurse said you were thinking of hurting yourself.” Actually, my idea was to stop the hurt. “Have you thought how you’d do it?” Without skipping a beat I replied, “I was thinking of driving my car off a cliff.” She sat up straight. “I’m not going to do it but it crossed my mind.” By now, leaning in again, masked but ungloved, she was softly stroking my exposed ankle and lower leg crossed over the other knee. We’d known each other eleven years, where I’d come bouncing in for my biannual check up with news and pictures of my latest adventures. I was a success story. I wanted her to go home feeling good that at least one of her patients was leading a robust post-cancer life. I was proud of having endured my one-year of treatment twenty years ago – what I’d undergone to survive and even thrive. I’d shown my ponytail to bald cancer patients at the hospital where I worked to show that there was hair and hope after treatment. “With all the new discoveries, if you’re going to get cancer, this is a good time to get it.”
What an idiot I was. I wasn’t feeling it at all that Tuesday. Through the sobs and believing I knew the solution, I kept saying, “I just need a dose reduction and an antidepressant.” Her reply, “We’re not even going there until you get stable.” I thought my requests were the path to stability. Irritated and defeated at being denied, I bowed my head and studied my options. I couldn’t find any. More sobs. Then I heard, “The fastest way to get you an antidepressant is to go to the ER.” I weighed that versus waiting for weeks over the holidays for a shrink appointment. “Besides, I can’t let you go home with suicidal ideation.” ”I’m not going to do it. I was just thinking about it.” “Normal people don’t have those thoughts.” It was clear that I was not going to win this battle and if I could get an antidepressant sooner by going to the ER, well then, ok. The young buff, black, sweet and gentle-as-can-be RN, who usually gives me my shots and takes my blood pressure, escorted me to the opposite side of the hospital to the ER. Covid and all, I took his arm. My face still wet, we laughed on the way, “I’m really not crazy. I’m just having a rough time.” “I know, Miss Karen.”
Onto a gurney I flopped and began sobbing again. Then I noticed they placed a uniformed guard at my door. Uh oh. I’m captive. I was raised in captivity and maybe that’s why I’m most comfortable without a roof, or even a tent, or trail. With nothing to do and knowing that unless you have a heart condition, Emergency Rooms treat you like anything but an emergency, I pulled up my RN friend, Mindy’s, contact info on my phone and poked the mobile number. “You’re not going to believe this…” “Karen, they’re going to put you on a seventy-two-hour hold.” “NO!!” “Yes, they can do that and probably will.” Oh, no. Rick thinks I just went for my shot. I was angry at him because I was unable to talk about the depth of my despair with him. No, it doesn’t make sense but there you have it. So I asked Mindy to call him and let him know where I was and that I was fine.
They changed guards a few times. One older woman guard told me to trust in Jesus. Two male guards spoke together just outside my room talking about some “fucked up” situation somewhere. The doc came and went and came in again five hours after my admission, all the time I’m waiting for an antidepressant. She said, “I spoke with your doc and I’m placing you on a 72 hour hold and sending you by ambulance to John Muir Behavioral Health. It’s a nice place.” Motioning to the guard, “Would they tackle me if I bolted?” “We’d probably call the police.”
Well, fuck. I just came for a shot and now I need a change of clothes and toiletries. I hadn’t eaten since a meager breakfast. I texted Rick and my pre-loaded net bag for backpacking showed up complete with a headlamp, lighter, and a bunch of other stuff I’d never see as an in-patient in a mental hospital, along with two Big Macs, fries, a soda, and my cancer meds.
Now dark, the ambulance finally arrived for the half-mile ($4,000) drive to the psyche hospital. Two kids, a girl and a guy who looked to be high school age, wheeled me out to the ambulance and got me onto their gurney where, with straps and a metal click, they LOCKED ME IN. The restriction set in and I was momentarily terrified. I’m used to rambling through mountains off-trail wherever I want to go, not restrained and locked to a gurney. My guide and good friend, Banning, had been wrongly committed to a mental institution for eleven months at age fifteen for insurance fraud. The horror of his stories ran wild through my mind.
Again, resigned to my fate, curious about the possibility of an interesting experience (who else gets locked up in a psyche ward?), and still holding onto the promise of an antidepressant, I relaxed and told the kids that I really wasn’t crazy. I pulled up a picture on my phone of me from summer before last where I’m backpacking up Lucy’s Foot Pass in Kings Canyon. “Do you know anything about the John Muir Trail?” “Sure! What do you want to know? Here’s a picture of my sister and me on Glen Pass.” He spoke of his magical visit to Evolution Basin and of his dream to hike the whole 220 mile trail. From my immobilized position in the back of an ambulance, I said, “Do it.” I gave him my email and by then it was time to unload me behind bars. I heard the clank of the metal gate.
It turned out to be a good thing. I needed a time out. Stay tuned for next blog post.