Walking Through Cancer?/Part 3

Critical Second Opinions

The lymph node biopsy was another easy procedure. I had general anesthesia. And because it was so easy with only a small incision in my groin, I decided I was fine to get back to my busy routines. Which I did, full force.

After one week of acting as though I hadn’t had surgery, the dam broke in my incision. I woke up to more water in my silk nightgown, this time about a cup of lymphatic fluid. I spent the next few days changing my pants and doubling my Kotex until it finally stopped. When I saw the surgeon shortly thereafter, I got more reprimands about not coming to the hospital so she could drain it herself. She took a needle while Gene held my hand and tried to squeeze some more liquid out, but there wasn’t any left.

While we were with her, I said,

“Well, aren’t you happy for me? The lymph node pathology report said ‘no metastatic tumor.’”

“Yes,” she replied, “but it was inconclusive for lymphoma. The sample was sent to NIH for consultation.”

“Okay, now you’ve lost me. If I have no lymphoma in my bone marrow, how can I have it in a lymph node?”

“Marilea, you need to discuss this with your hematologist. Come back Monday so I can keep an eye on that incision.”

Foiled again.

Well, I kept up with all my activities, except swimming.

By February. I’d been hanging by a thread since early September. Seems like a long time. What have I learned in all this time? Patience. And acceptance of what I cannot control: scheduling and pathology reports.

Dr. Julia wasted no time in calling in a second opinion from Fred Hutchinson Cancer Center in Seattle. I had a Zoom consultation with a doctor there and she was concerned enough to order another bone marrow biopsy. Another one? I had to twist her arm for her to agree to sedation. The alternative was being awake but “tranquilized” with Ativan while two long needles of various thicknesses dug into my hipbone. Nah, I’m old school. Knock me out, please.

In the meantime, I’d been keeping up with my volunteer work, just keeping busy and distracted. Honestly, I’m so important, how would they manage without me at the thrift shop? Well, I was foolish. I got a raging staph infection in the incision and went on antibiotics for two weeks. My surgeon put me under house arrest. I couldn’t leave my bedroom.

A big lesson in humility. Note to Self: I’m simply not that important!

I made a nice hotel reservation in Seattle for the night before the early morning procedure on Tuesday, 2/6. My attentive surgeon at Providence insisted on seeing me before the procedure to see if I was sufficiently healed from the infection, and I passed inspection. A big sigh of relief! Gene and I had a nice dinner and night sleeping a couple of blocks from Fred Hutch. Getting there on time would be easy.

Walking Through Cancer?/Part 2

                                        The  L–O–N–G  Diagnostic Phase

I’m glad that my personal physician is sharp and attentive. I only see her once a year because I never get sick. But when she saw my complete blood count (CBC)  in August, she called in the calvary. She got me in to see a hematologist as soon as possible, and from early September, Dr. Julia became my doctor. She drew about ten vials of blood and sent me home for a month.

Then I came back and she ordered a bone marrow aspiration and biopsy. That procedure was an easy one, thanks, probably, to hordes of screaming meemies who, on previous occasions, had to be held down while the doctor excavated their hip for bone marrow. After years of that, the doctors at Providence Hospital decided to be more humane and offer sedation. Boy, was I born in the right century! I didn’t feel a thing. Out like a light and home in a few hours.

This bone marrow biopsy eliminated blood cancer, although it didn’t say what I did have. Yay. I was home free!

Dr. Julia, based on that bone marrow report, diagnosed me with L-HES, a rare blood disorder that occurs in about .03 percent of the population. I will write this once so I don’t have to write it again: lymphocytic-hypereosinophilic syndrome. So few people have gotten it that very little is known about it. And my chances of getting it? So, yes, she was skeptical. But it’s not a benign condition. It is treated with steroids, and if that doesn’t kill all the eosinophils in my blood, they will eventually invade my organs and kill me from that. So I sat around stewing with that diagnosis, eventually telling concerned family and friends Dr. Julia’s diagnosis.

Not so fast, sister! Dr. Julia is thorough and relentless. She wasn’t satisfied, so she ordered a PET scan. That was another easy procedure. I swear, the people at Providence Hospital really know how to coddle their patients. They gave me two (2) Ambien to take for the hour while I was waiting for the scan—so I would sleep while the radioactive agent was circulating in my system.

The exasperated radiologist said she couldn’t even pronounce what she was looking for. And then she caught me using my cell phone and reprimanded me,

“Don’t use your brains, Marilea. That’s what the Ambien was for. Just go to sleep!”

After an hour, I sleepwalked into the machine and kept sleeping through the procedure. Then Gene drove me home. But the results were troublesome. Dr. Julia found some “hot spots” (activity that often means cancer) in my groin and said I should have a lymph node biopsy, looking for what might be causing them.

And so, I graduated to expensive procedure #3. I am grateful for many things in my life, but excellent health insurance—which I earned from my years as a teacher—approved and paid for them all. A welcome silver lining in this cloud hanging over me.

Walking Through Cancer?/Part 1

We are on a journey, our life journey, and ultimately we’re all walking each other home. That’s one of the well-known songs written by Kate Munger (lyrics by Ram Dass) at Threshold Choir. Singing with the Stanwood chapter of this choir, Heart Songs, for about eight years, I’ve enjoyed giving comfort to these people at our local nursing home. My heart spills over with gratitude, and I want to share this journey of faith with you. It is a deep well of spiritual health that has sustained me, and will continue to do so, as I prepare for what comes next.

                                         Walking Through Cancer?/Part 1

                                  The First Symptoms/September, 2023

Bizarre. The night sweats. Even when I went through menopause, I was spared the hot flashes that many women endure. One day I was fertile, and the next day I wasn’t. What a lucky lady!

I never sleep naked. My favorite silk nightgown feels velvety on my skin, between me and the sheets. I used to sleep peacefully at night, eight hours almost every night, always waking up refreshed.

But for the past six months,  I’ve been waking up soaking wet—and more than once. I always go back to sleep, thankfully, but it’s like sleeping under an open rain cloud. Not pouring rain, just a light sprinkle, but enough to get me soaking wet. WTF?

For the past couple of years, I’ve been complaining to Gene about my changing body temperature. He’d be sitting on the deck playing the guitar in 70 degrees.

“Hey Babe, come out and sit with me. It’s gorgeous on the deck now.”

So I join him, but after about five minutes I can’t stand the heat. It feels to me like 90 degrees instead. It’s so unexpected because as a former smoker I always used to feel cold in my hands and feet. Seventy degrees used to feel like sixty degrees to me. I chalk it up to nothing, just growing older.

Often with blood disorders, the indolent varieties can hibernate in you for years before the symptoms appear. Such a scary thought, to have a disease marinating in me for years while I gleefully carry on with my life. But that is the case with several blood disorders—no symptoms until the ones that you can’t ignore.

Like night sweats. They started last September, and at first I thought they were kind of exotic, a cooling way to lose some excess water in my body. I did need to wash my sheets more than usual. And my silk nightgown. I couldn’t believe the color of the wash water. Then I searched for another silver lining and I thought, “Yes, those are all my body toxins.” Well, maybe. But nothing else came out in the wash water.

Then, there’s the itchy skin. A dear friend gave me a jar of anti-itch cream her husband used before he died.  A hallmark symptom? Yes, and messy. Even with the cream, the itching was so unbearable that I couldn’t resist scratching. Then the bleeding, and the scabs, and more itching and more scabs. C’mon, Marilea, use some self-control!

Scars form. I am now covered with old scabs and scars, mostly on my arms and back. I vow to stop giving in to the urge to itch. A small victory. Something, at least, that I have the power to control.

The power to control. Yes. I have become a Google Queen. In an effort to get out in front of whatever it is I have, I Google every disease that has my symptoms. It took one click to read that they are hallmark symptoms of most blood cancers.

Spelunking

This essay was first posted in The Memoir Network July 21, 2017

I enjoy many forms of physical exercise, from climbing mountains, to backpacking along trails, to bicycling, and even swimming. But mostly nowadays I just go hiking, sometimes with my grandchildren and partner, but often alone. Working the muscles of my body is good for me and helps keep my joints working. I feel better after a long walk.

So, too, my mental muscles feel better after a good writing workout. I’ve been writing diaries ever since I was very young, and I keep boxes of them wherever I’m living at the moment. I draw on them a great deal in my memoir writing. They offer a panoramic view of my life.

I’ve been scribbling “Morning Pages” ever since Julia Cameron’s Sound of Paper came out. Every day along with my morning writing I include entries in my gratitude journal as well as ideas for my recovery blog.

But memory can be selective; memoir is a tricky animal to tame. Mining our depths, it’s like spelunking in a cave. But how much do we see on those walls of rock? How bright is the lantern we’re holding? We’re swinging from a rope, trying to hold ourselves erect, trying to see what’s there.

And who are we doing the seeing? Not the same person we were last year, or when we were five. What’s etched into those rocks that might read very differently to us now?

Darkness often comes to light when I read pages I wrote when I was ten years old. I may not be that hurting ten-year-old anymore, but I can remember that ten-year-old hurting. The essence of memoir is the change that has occurred in the years in between.

Stringing thoughts together and writing them down keeps my mind agile and open to understanding myself better. At times, I feel confused or I want answers, and when I write about it, the mud often sinks to the bottom and I can see things more clearly.

It’s a clarification process.

Sometimes I start a piece, and by the time I’ve finished it, I’ve answered some questions. It’s sort of like, as Lillian Hellman once described the term “pentimento:” my “old conception, replaced by a later choice, is a way of seeing and then seeing again.”

“Pentimento”—a term in art where sometimes, the artist changing his mind, paints over what he had previously put on the canvas. Thus, he repented. 

Many times, I’ve written stories that ended up nowhere I had intended. I thought I wanted to write about one thing, but ended up writing about something else. My first memoir started out as an angry rant about losing my daughter to a horrific illness. But in the two years it took me to write it, it evolved into a memoir of recovery. I was changing and transforming myself even as I was writing it—a very organic process.

So, writing for me is self-discovery. It’s a real excavation process, as we mine our depths often coming out so much richer in self-knowledge than we were in the beginning.

Sailing Lessons

“I am not afraid of storms for I am learning how to sail my ship.” Louisa May Alcott

I grew up in Massachusetts on a lake, and we sailed every summer. Boats and water are a part of my narrative because it’s where I started my life. But it was never really smooth sailing.

Twenty-two years ago my world turned upside down. My boat capsized as I started watching my daughter tumble down the rabbit hole of substance use disorder. Mind you, I was living a wonderful life, not perfect, but whose is? I was a hardworking single mother with three kids who seemed to be doing well. Just one of millions of women doing their best for their families. And then I got tagged. Annie became another statistic.

I got sucked into a perfect storm of my own shortcomings colliding with my vulnerable daughter and her addictive character. I was utterly guilt-ridden, and that crippled me and my judgment. I enabled her far too much, cradling her in one safety net after another. I inadvertently prevented her from facing consequences and learning from her behavior.

In the end, by taking on far too much responsibility for my daughter’s illness, I had such severe PTSD/clinical depression that I felt compelled to retire. That was my bottom, when I knew I had to change my thinking and some behaviors in order to reclaim my life. Annie is a wounded soul split in half—the addict and all the life that entails; and my loving daughter. I believe with all my heart that my loving daughter would want me to survive losing her. And my survival is how I choose to honor her.

I got help in the rooms of twelve-step recovery; there are many, many of them, in every city and here on Facebook. The kind of help I received involved a lot of reflection and reframing my life. I learned not to fear looking back on my childhood, that the answers to much of my coping skills lay there. As I moved forward reflecting on my life as a young mother, I understood why I behaved as I did much of the time. And I awarded myself compassion and forgiveness for doing the best I could in difficult times.

Now I feel blessed, if only because the ground under my feet is more solid. The storms in my life have rocked me many times over the years, but I’m learning how to weather them. When we lose something as precious as a child, everyone and everything in our lives loom larger in importance. It’s a terrible irony of life that the intensity of our joy often comes to us at the cost of much pain.

I have a snapshot of me and Annie on my aunt’s sailboat many years ago just before she started tumbling away from us all. We’re both smiling, and it doesn’t make me sad to look at it. On the contrary, it reminds me of the fragility of life and how more than ever it’s important to live with intention. I think I sleepwalked through much of my early life, entirely unaware of who I was. But now, thanks to my years of work in recovery, I have learned a better way to live. We all pass through storms in the course of our lives. But they don’t have to destroy us. We can seek out healthier solutions and work them into our lives.

“We are made to persist; that’s how we find out who we are.” ~Tobias Wolf

“How Do I Love Thee..?”

  From my forthcoming memoir, Gene and Toots: A Story of Love…and Recovery, to be released this summer:

The lessons I’ve learned in life have brought me closer to an understanding of the mysteries of love. And it has everything to do with one of the Greek words for it: agápe. The Greeks certainly understood the difference between different kinds of love—eros, or sexual love, for example—but agápe is the word for humanity’s love for each other. My understanding of the word further leads me to an English word derived from it: agape, or open-mouthed.

           Loving between two people almost always involves an openness of mind and heart. Gene and I were hoping—this second time around—to embrace some of the lessons from our past for a greater purpose. We’d hoped to find a way to be happy together while still honoring our differences, even our whims at times.

           We haven’t always agreed on things, but we either found a way around disagreements or lay them aside to look at later, without losing our individual integrity. There were times when these disagreements were costly. But we’ve learned to look at these problems with cooler heads, figure out who is responsible for what, and try to resolve them favorably. That’s the most any couple can do when conflict arises.And because we love each other, we are determined to work things through amicably—always hoping for the win-win.

Loving can be expansive. It has the capacity to make us bigger than we were before. I was thoroughly against gardening with Gene, much less running an orchard. But over time, seeing all the blood, sweat and tears he put into it, and with such rich fruits of his labor, I began to feel swayed. By the time we moved to Camano Island, I’d opened my mind enough to work our garden with him. And I’ve learned to love it. Loving Gene transformed me into a novice but enthusiastic gardener.

Gene has showed that same openness to me and my needs. When we moved to Camano Island putting us near my son and his family, Gene left part of his family behind in New Mexico. Bridget still lives there and is happy with her life in community theater. That was no small sacrifice for GeneBut we do spend money and time to go back and visit, reconnecting with Bridget, just as we do with Patrick in Virginia and Caroline in San Francisco.

“And the learning process must be coordinated so that the actor learns as the other actors are learning and develops his character as they are developing theirs. For the smallest social unit is not the single person but two people. In life too we develop one another.” ~Bertolt Brecht

            When I met Gene, I was at a point in my life where I craved independence. And Gene also enjoyed the freedom I encouraged him to explore. This is where we were when we met, and we found the ability to remain open to the challenges we faced. Rather than running from them, we let them shape us.

           We worked hard to meet each other where we were—in our work lives, in our wilderness adventures, in our living arrangements, and in supporting our families. We learned early on that those families—whom we loved without exception—would have the ability to test us. We have walked with them through their trials—they, in turn, have helped me and Gene through ours. We can look at each other now with the certainty that we did our best for our children. And that—sincerely loving that part of each other that is separate—brought us closer together as a couple.

           Gene and I developed each other’s capacity to love well. We did our best to feed each other’s good wolf. I blossomed, in midlife, by uniting with a man who loves me the way I am, and I him. And from that foundation we both grew in our willingness to try new things, secure in our faith about the mystery of love.

  We can keep it—if we don’t hold on too tight.

The Power Of Speaking

Deborah Meier said in her book, The Power of Their Ideas, “Teaching is mostly listening, and learning is mostly telling.”

I love this because as a former teacher I used to have it turned all around. I got better, fortunately, but then I retired. Now I’m an author and what I’ve learned about myself by writing has filled three books.

I speak a lot, telling my story, mostly at recovery meetings. And when I’m not speaking to other people, I’m speaking to a piece of paper—many pieces of paper. It’s my therapy. It’s how I learn about myself.

It’s a constant practice of self-discovery, this discipline of pen to paper. I cross out, revise, change my mind, rephrase things. All this writing and rewriting helps me clarify my thoughts, my understanding of what’s real to me: what’s authentic. It’s how I learn about myself.

How I’m learning.

Continually.

It’s an ongoing process.

I find that as I keep growing and changing my writing reflects that as well. There’s nothing static about me or about my writing.

And just as the words flow out of my pen onto paper, my recovery continues to flow from my heart to those around me. It’s a real symbiosis, this relationship I have with my pen. It eases the words out of me so that I can share what I’ve learned with others.

The rare epiphany I experience is like a volcanic eruption. I had one recently, and writing and rewriting about that has taught me so much about its meaning. But mostly I’m just going with the flow of life, trying to pay attention with what’s going on with me.

So I continue to do public speaking, which is a tremendous learning experience. And the more I write—the more I speak on paper—the more I learn about who I am and who I’m becoming.

I just have to keep my heart open and listen.

Reunion

    “I want to feel myself part of things, of the great drift and swirl; not cut off, missing things…” ~Joanna Field

                                            Reunion 

In 2006 my partner, Gene, and I went to my fortieth high school reunion. This was in a town where appearances mattered above all else, where I’d learned growing up that how I felt was secondary to how I looked. And that year, I was looking good.
I hadn’t been in touch with any of the people I might see there. So they didn’t know any of the details of my life. All they would see was a pretty fifty-eight year old with her handsome boyfriend.
I went to say to a few of them, “See? You didn’t destroy me after all. I’m still here.”
My first boyfriend, John, was there with his friend, another kid from the popular clique that had blackballed me in junior high. He was still a handsome man, and I remembered why I was attracted to him back in eighth grade.
It was odd seeing him there, with all those years between us.
To my surprise, he and his friend sat down at the same table with us—right across from us. I didn’t know anything about him, and right there was an opportunity for him to tell me about his life.
But I was disappointed.
His eyes were carefully averted—drawn to other people like magnets all over the room. No “Hi there, Marilea. Look at you! What have you been up to in all these years?” No curiosity about me at all. Not even a polite greeting or nod. I might as well have been invisible. But then again, Gene was sitting next to me, and they might have found that intimidating. He was my convenient shield.
Another friend of John’s sat down on the other side of him, and John craned his neck in that direction, excitedly asking him all about the Patriots’ upcoming season.
Gene and I left the table unceremoniously, moved around a bit, chatting here and there. We could not get out of that building soon enough. I felt like I didn’t belong there, like an outsider, which I was in a way. I wasn’t a “townie” anymore; I had defected four decades earlier.
When I left that town I rarely looked back, disconnecting myself as I frequently did throughout my life. It represented so much pain and angst for me that I needed to get away. For a while I kept up with the few friends I had, but even that grew difficult with my moving around so much.
Though it was fun to see some familiar faces many years later, going to my high school reunion felt awfully superficial to me. I didn’t really know anything about the people there, and they knew even less about me.
Sometimes going to a reunion is like looking at a display case in a museum: you often know nothing about the work that went into it.

Empathy Starts Here

                                                                

Pity the poor fly. Its brain is pretty miniscule and not capable of making decisions that might lead it to its final flight.

Have you ever wondered what they were thinking flying through our open doors and/or windows? Well, they weren’t thinking; remember, they’re just flies. They had just spent a lovely day outside, gobbling up insects, laying eggs on piles of compost, and just frittering away their time, wondering what to do next.

“Oh, there’s an open door,” they venture excitedly, “maybe there’s more food through that door.”

“Nope, not a good choice,” we implore, as we flail around trying to whisk them back outside. But too late for some. They get lost in the curtains, the laundry room, the bathrooms. They do tend to linger around windows as they wistfully wonder how to get back out into the open air. Yet they have no idea how to accomplish that.

“Oh, look at all those ants…” precursors of a thought, their jaws watering at the sight of all the insects through the living room window. My son leaves the doors open sometimes, just so that they can escape the doom that awaits them.

But then more just come in.

Oh, pity those poor flies. They’re not suicidal. That would require some forethought, and they don’t think at all, remember. They just like to eat bugs. And poop. And make more flies. One place to do all that seems just like any other one.

Wrong! Inside most reasonably well-kept houses there are not a lot of bugs. So there they sit, or flit from room to room, vainly scrounging around for some edible bugs, while they slowly lose their energy, utterly bewildered by it all.

Finally, unable to carry on and fly, these lost and confused insects drop down onto the floor where I find them, usually near the windows—those glass barriers that kept them from swooping down and devouring all those ants. One by one I pick them up and take them outside, where they become dinner for other insects.