Susan Keller has a 30-year career as a medical writer and has won awards in national and regional poetry contests. Magazines including Psychology Today, Conquer: The Patient Voice, Patient Power, and two Guideposts magazines are all running articles about Susan’s journey with lymphoma. She has also been featured in the media, including the Marin IJ and the Argus Courier. "Blood Brother: A Memoir" is now available on Amazon and Barnes & Noble Nook.

Susan Keller

Four months after my allogeneic bone marrow transplant, I left the Stanford Cancer Institute to build a new cancer-fee life. Now I had to go into my local lab three times a week for blood work to monitor my progress.

In checking my computer for results of my blood test today, my liver function tests — indicators of liver injury — panic me. They are more than 20 times normal. Is this a meltdown? The Chernobyl of my liver? Three Mile Island? Strangely enough, I feel pretty good.

It’s after 7 p.m.I leave an urgent phone message for the on-call oncologist at Stanford. I pace and wonder if I should be in an ambulance or check into the ER. I phoned my friend, Gael, an RN, and asked her what to do. She demurs, “I hardly have a thumbnail of information about liver function; in fact, I barely have a hangnail of knowledge.”

I laugh out loud. “Well, if my liver gives out while we’re on the phone, I will have died laughing.”

My husband, Dan, wants to take me to the hospital but I convince him to wait until we hear from Stanford. Getting a call back, the oncologist assures me I’m not dying on the spot, but must go to Kaiser Permanente tomorrow for more testing.

After blood work the next day, I get the diagnosis: chronic graft-versus-host disease (GVHD), a disorder that commonly develops in donor-transplant patients after day 100. Patients can die from chronic GVHD, though I’d faced much worse and gone way too far to be knocked down now.

Along with the alarming liver counts, white, lacy ulcerations cover the inside of my mouth, another sure sign of GVHD. Treatment is prednisone.

Prednisone is used for a vast variety of illnesses and disorders, and — almost miraculously— cures or improves many dire and more mundane conditions. Reaction to prednisone depends on the dosage, with higher doses causing more severe side effects. Because my liver functions are so out-of-whack, I’m started on 80 mg per day. Having no previous experience with the drug, I have no expectation of side effects or what this dose means.

Within a couple of days, 80 mg of prednisone daily has turned me into an eating machine with a loathsome attitude. I cannot stop myself from biting Dan’s head off every time he walks into the room. I am a harpy — eating us out of house and home — andnasty and short tempered to boot. But the white spots inside my mouth are disappearing.

Hardly able to stand myself, I decide to read up on the side effects of prednisone, which include: weight gain (no kidding), hypertension, diabetes, insomnia, moon face, depression, anxiety, sexual dysfunction, female facial hair growth, balding—Wait a minute, that’s not fair—osteoporosis or loss of calcium in bones, fatigue, body aches, and sagging skin, among other dreadful effects. Great. Just great.

I become very annoyed with my doctor, which is not an unexpected response since I am furious with the entire world. I struggle through a week of hell. The next liver function test is still elevated, but has dropped steeply. I’ve been through enough. I’ll taper the prednisone myself. Still very bad tempered, I’m not going to ask anyone and be told no.

A month later, I’ve tapered myself down to 10 mg per day. I am reconciled with the world, and Dan, and have gotten my face out of the refrigerator.

After another week, I take myself off prednisone entirely. My liver function tests are near normal and the white spots in my mouth don’t return. However, not one of my doctors said, “Gee, your liver functions are looking good, why don’t we taper you off the prednisone?” I doubt that my docs have ever been on daily doses of 80 mg of prednisone for weeks at a time. Otherwise, maybe, they would know what I’ve been suffering. Alright, they deal with life and death issues daily, so maybe my bad attitude or gluttony isn’t the most pressing item on their agendas.

I’ve experienced both sides of the drug-dose calamity: the catastrophically 

 that led to a near-psychotic break and the non-existent-taper of prednisone that threatened to do the same. Where is the common sense in this? And beyond caring for what the patient is going through, there are the economics of these oversights to consider. Untold numbers of ER and urgent care visits could be avoided if drug dosages and resultant side effects were better managed, perhaps just by a phone call from a nurse or pharmacist a couple of days after a prescription was started.

A simple, direct outreach call does not strike me as rocket science.

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Articles

I’d become an eating machine with a loathsome attitude on prednisone, so I decided to conduct my own taper of the drug. 

After a Horrible Experience With a Prescribed Drug Taper, I Decided to Wean Off Prednisone Myself 

In the middle of my Hyper-CVAD treatment for mantle cell lymphoma, an on-call oncologist entered my room. A balding, professorial-looking fellow — wearing a bow tie and appearing to be years past retirement — he pulled a dry-erase maker from his pocket and began writing on the white board.

I’m going to be released from the hospital today and my dexamethasone will be tapered. As he scribbled numbers and mumbled about body mass index — mine wasn’t much anymore — the half-life of dexamethasone, and some other mathematical jargon, he concluded: one dexamethasone tomorrow, one the day after, and one-half on day three. To me, his plan carried a strong odor of catastrophe. How can 40 milligrams — for days — then 10, 10, and five be a taper?

“How about 30, 20, 10, and five?” I ask.

He shakes his head. “No. Ten milligrams will adequately taper the medication.”

After morning meds, including 40 milligrams of dexamethasone, I’m released with a plastic vial containing three lonely dexamethasone tablets. On the way home, I’m restless as a rip tide.

I’m on a two-week break from chemo and the next morning convince my husband, Dan, to go to work. Downing my one allotted dexamethasone, I head to my closet. I cannot decide if I need that extra bathrobe and do not understand why I’m so annoyed about those heels I never wear. Damn heels.

The task overwhelms me, but I can’t stop. I put clothes into Goodwill bags, then remove them. The clanging of hangers brings me to tears. I shake my head to try and stop the buzzing. I rub my too-warm bald head. I should eat, but can’t. Maybe coffee. 

. I pace and hyperventilate. It’s only some sweaters; it’s only chemo and steroids. It’s only cancer.

By 3:30 p.m., my anxiety level is at high alert. And, we’ve had a technology meltdown — only my cell phone works. I call Dan. Sent straight to voice mail, I say I’m not feeling well, but tell him not to worry. I forget my cell phone downstairs.

After leaving the message, I go upstairs to the couch in the family room. Pressing my knees to my chest — literally holding myself together — I now know what “crawling out of one’s skin” means. My cell phone rings and rings. I’m sure it’s Dan. I want to get up but can’t move.

The house gets dark and cold. Desperate, I wait and tremble.

Finally, he’s home. “Honey? You here?”

“Honey?” He hurries upstairs. “What happened?”

He comes back upstairs with a half glass of wine and a large tumbler of wild turkey for himself. He turns on the heater and wraps a blanket around my shoulders. With the first sip of sauvignon blanc, a tiny ripple of calm moves through me.

“I’m so sorry. I’ll be home tomorrow. I’ll help.”

Day two of the fake dexamethasone taper, I swallow one pill and go back to the closet. Do I love or hate a new pair of tennis shoes? Maybe I should eat. Should I? By mid-afternoon, anxiety and depression bear down on my chest and squeeze my solar plexus making breathing difficult. Giving up on the Goodwill bags, I pace from room to room and try to avoid Dan so I won’t have to talk. Craving only oblivion, I swallow a sleeping pill and go to bed.

Day three, I take my half tablet. The weight on my chest is less. The poisonous crap is leaving my body, but I still cannot decide what to do with myself. I pretend to nap and spend most of the day avoiding Dan and attempting to quiet my unstoppable mind.

In the afternoon of day four, I can breathe. The weight on my chest has lifted. Dan builds a fire. I make popcorn. We drink beer and sit on the couch. I taste salt. Butter. Beer. These flavors explode in my mouth. I can’t get enough. More popcorn. More beer. Thank God this steroid is gone.

Did it have to be this hard? No, the steroid could have been adequately tapered.

Providers, please, ensure a follow-up call by a pharmacist or nurse. Reduce unnecessary ER and urgent-care visits. Don’t let patients suffer needless physical and emotional shattering from a pseudo medication taper.

And if you require help, call your provider. Don’t go through avoidable anguish like I did.

For more news on cancer updates, research and education, don’t forget to 

In the midst of my treatment for mantle cell lymphoma, I had to suffer through the feeling of wanting to crawl out of my own skin when my oncologist gave me a medication tapering plan that was not gradual enough.

My Oncologist Gave Me a Pseudo-Medication Taper That Made Me Feel Like I Was Losing Control

In September 2005, I was diagnosed with stage 4 non-Hodgkin’s lymphoma. Active treatment would last nearly a year, during which I endured the brutal in-patient chemo Hyper-CVAD (a drug combination of cyclophosphamide, vincristine sulfate, Adriamycin [doxorubicin hydrochloride] and dexamethasone), a psychotic drug reaction and a septicemia, better known as sepsis, that almost did me in.

By mid-January, I’d completed six rounds of Hyper-CVAD and it was time to check my progress with a second bone marrow biopsy. The first biopsy my oncologist had performed back in September revealed that 98% of my bone marrow was a cancerous mush.

But this afternoon, I was thinking less about the shocking results of that procedure and more about how much it hurt. So, I decided on some pre-emptive self-medicating. My friend Laurie and I went to lunch and I sipped the most expensive Chardonnay on the menu.

All about comfort food, I savored a bowl of homemade tomato soup and corn bread. In the chatter and buzz of that warm, busy café, I — in a wig covering my bald head — looked the same as the other women. Ladies who were healthy, who lunched in chic bistros, who were not scheduled for their hip bone to be bored into with a large-gauge drill and then have the marrow sucked out. Of course, I wanted the wine.

Over lunch, Laurie and I talked about a trip we’d taken to Maui with our families five years earlier. Young, fit and adventurous, we decided we could swim out — and back — to Black Rock off Kaanapali Beach, a quarter mile from our hotel, fine linens, yoga on the beach and sunset cocktails.

With fins, masks and snorkels, we swam in the calm sea. As we neared Black Rock, the sun pierced deep into the clear, blue water, and the kaleidoscope of fish beneath us was breathtaking.

But better, much better, was the giant sea turtle that glided past. Letting the current take us, we drifted beside the choreography of his graceful flippers, the fine geometry of his shell. Exuberant, I thought him the most beautiful creature I’d ever seen.

The giant turtle blinked and headed out to open water. I wanted to follow him, but raised my face and looked shoreward. The beach umbrellas were smaller than the ones in our nightly Mai Tais. How had we drifted so far? Were we caught in a rip tide? I glanced one last time at the magnificent animal.

We couldn’t afford to panic. We had to trust. Catching a wave shoreward whenever possible, we swam with deliberate strokes. Arm over arm, feet and legs kicking in the warm buoyant salt water, the sun hot on our backs. Eventually, we stumbled up onto the sand, our legs wobbly, but our spirits soaring. We couldn’t stop smiling.

We had ventured into a wilderness, been swept away, then made our triumphant way back.

Cancer is also a wilderness that gives us the choice: panic or trust. Choose trust. Make steady progress until you get well and return to your beautiful, everyday life. But — like that swim to Black Rock — we won’t be the same person when we come home; because wild and indifferent cancer swept us into its depths and currents and will change us into a stronger, more triumphant person.

Deep into our recollections of Maui, I forgot about the biopsy until I glanced at my watch. With the last of the Chardonnay, I swallowed an Ativan. By the time Laurie and I walked into my doctor’s office, I was not exactly relaxed — but accepting. I did not share my self-medicating with my oncologist and asked if Laurie could come into the procedure room.

Although I clamped onto Laurie’s hand with a death grip, this biopsy was not nearly as bad as the first. My oncologist wrote in my medical record: “

Pt tolerated procedure very well, no complic, min blood loss.”

I’m not advocating this type of self-medication but figure: Whatever helps. A glass of Chardonnay, a magnificent sea turtle, an unshakeable trust in our strength.

A non-Hodgkin’s lymphoma survivor writes about how she chose to approach a stressful doctor’s appointment and how doing whatever helps may look different for everyone.

Cancer Is a Wilderness That Gives Us a Choice: Panic or Trust

I had it all, or thought I did. At 55 — happy in my marriage and at the top of my career — I awoke one morning in damp, tangled sheets. Turning to dislodge my leg, a searing pain shot up my back. I moaned, gasped, then slowly sat. My husband had already left for work in San Francisco. Wincing as I stood, I made my way downstairs — holding tight onto the bannister — and walked to my home office. At my computer, I typed in back pain and my other oddball symptoms: shortness of breath, weight loss and night sweats. In a nanosecond, Google diagnosed a kidney infection. A quick appointment, a bottle of antibiotics, and I’d be fine. In my internet search, I failed to include the lump on my neck.

Mid-morning, when I mentioned the persistent knot to my internist, she ordered emergency blood tests and X-rays. Twenty minutes later, my chest X-ray — blazing with cancerous nodes — filled her computer screen.

“Likely lymphoma,” she mumbled. “I’m sorry.”

There was a heart, lungs and stomach, but also filling the screen were bright spots that resembled glistening hailstones scattered on a sidewalk after a storm.

Without immediate transfusions, a heart attack was imminent. Within two hours I became an inpatient in a faded hospital gown. Vulnerable and weak, I’d been changed from the woman I am — one who tries to be kind, has good taste (or thinks she does), doesn’t eat meat, reads a lot, drinks a little too much and wishes she weren’t so ambivalent about sex — into a medical record number, lab values, a diagnosis and a course of treatment

Tests revealed mantle cell lymphoma (MCL), a rare and aggressive disease. Ninety-eight percent of my bone marrow was a cancerous mush.

Inpatient Chemotherapy Was Full of Surprises

During treatment, I had to pee in a pink plastic “hat” to measure the number of dead cancer cells in my urine. I was as soggy as a sea cucumber from the fluids that dripped into me around the clock. I endured a psychotic drug reaction where I learned what “crawling out of one’s skin” means. And a near-fatal blood poisoning made me wonder about the shape, size, and sound of death. After an onslaught of chemo, I was emaciated, bald, and — against all odds — in remission.

But MCL has a nasty habit of coming right back, and to prevent a quick recurrence, I needed a stem cell transplant. But neither of my brothers were a match, nor was there anyone in the international database of donors.

Without a transplant my survival was unlikely. The only possible donor was Johnny, my brilliant, off-the-grid brother who had vanished 30 years earlier.

From left: Susan Keller, Dr. Michael Craig, Johnny Shultz and Andrea.

Finding him was nothing short of miraculous. That he was a genetic match and agreed to donate his stem cells was profoundly amazing.

I was admitted to Stanford Advanced Cancer Center for a tortuous 10 days where my immune system was chemically eradicated and I endured daily doses of radiation.

After the stem cell transplant, I was released to begin 100 days of recovery with my husband, Dan, as my trusty caregiver.

I couldn’t cook, clean, do laundry, drive, exercise or have sex. Dan had to do all of this – well, except for the sex part. He didn’t reach for me. I didn’t blame him. Plastic tubes — a Hickman catheter — for taking blood and giving meds, sprouted from my chest, and my hairless, emaciated body was hideous. We’d had sex only once in the eight months since my diagnosis.

Every drop of water I drank (three liters a day) had to be boiled. Dan did this graciously, reliably and without complaint for 100 days. Also, with his meticulous attention to detail, he flushed my catheter tubes daily and cleaned them twice a week.

So many heroes came into my life during my year of treatment, and, because of them, I am now a 16-year survivor of a lymphoma that would have almost certainly taken my life in less than three.

Cancer is a great teacher and helped me rebuild my family. Johnny is now back in my life, and while the 30 years we were apart and our significantly divergent paths in life created two people who are profoundly different, I can now help him financially, love him from a distance and express sincere gratitude for his great gift of a second chance at life.

I am hopeful that my story will convince others – who have faced cancer themselves or love someone who has – that miracles do happen. An against-the-odds story can be everyone’s.

A cancer survivor explains the miracle of finding out the brother she hadn't seen in 30 years was a genetic match to donate stem cells for her treatment.

Susan Keller

After a Horrible Experience With a Prescribed Drug Taper, I Decided to Wean Off Prednisone Myself

My Oncologist Gave Me a Pseudo-Medication Taper That Made Me Feel Like I Was Losing Control

Cancer Is a Wilderness That Gives Us a Choice: Panic or Trust

An Against-the-Odds Cancer Story Can Be Yours

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