Waking Through Cancer?/Part 9

                                                    Listen to Your Gut

I determined to continue being a squeaky wheel. The secretary I called daily told me to pay attention, instead, to my garden. Yup, she really said that. Then she stopped answering my calls. So I messaged Dr. Malakoti and asked what the two-month delay since my last PET scan was about. I told her I was getting nervous because I’ve had symptoms for eight months without a diagnosis. A week later I got a call from the surgical suite at University of Washington.

“Hi Marilea. I’m calling from Dr. Kim’s office at UW. He wants to see you right away, tomorrow if possible at 1:00 to schedule your surgery. Can you make it?”

“Can I make it? With bells on. I’ll be there, and thank you!”

So Gene and I raced down to Seattle to meet my surgeon. He was very nice, and when I gave him the timeline of my symptoms, he looked alarmed.

“How soon can you get me in for surgery?”

“By Friday or next week at the latest. I’ll meet with my team and put you in at the head of the line. This qualifies as an emergency and we want to see what’s going on right away.”

“Oh, thank goodness! And how soon will it take for pathology to get back to you?”

“Three to five days. My nurse will come in to talk about preop procedures for you, and my secretary will call you to give you a surgical date.

And just like that I’m all set up for my second excisional biopsy with a promised diagnosis within a week thereafter. I’ve been living in limbo for so long that I’m not sure how I feel. With a definitive diagnosis  (hopefully) comes the acceptance I crow so loudly about. We’ll see if I can manage it.

The biopsy went well. And I behaved myself: no activity for two weeks.

Which I did. Just in time to get the news that I do, in fact, have lymphoma.

I’ve kind of known this all along. Arrogant? No, more like intuitive. My symptoms are glaring—and now add fatigue to the mix—so I’ve always known I was very sick with something. But the night sweats aren’t “exotic” anymore. They’re just annoying, and I would like them to end. I’m glad to have a diagnosis so that some form of treatment can begin.

This story in nine parts has been my attempt to articulate my feelings, a healthy practice. My playing “Dr. Google” may or may not have been helpful. I have found no one in the medical community, including Dr. Julia, to discuss my case frankly with me. So all my research has been an attempt to get out in front of it all, prepare myself for my reality, and feel somewhat in control of a process that isn’t really mine to control. As a friend of mine told me,

“We are of an age when the fates will play their cards.”

And so they have.

Cancer?Diary/Part 8

At Least, Not At This Time…”

At that last Zoom meeting with Dr. Malakoti, I complained that in all these months of tests and speculation I haven’t yet had a physical examination. I guess I got through to her because the scheduler at Fred Hutch called me the next day and made an appointment for just that, before we would decide on another lymph node biopsy. That made wonderful sense to me, and all of a sudden I felt more secure, like we weren’t just throwing darts in the air. An exam would tell Dr. Malakoti a great deal about the state of my health. And it also taught me the value of advocating for myself.

So Gene and I drove down to Fred Hutch for a noon appointment and anxiously waited to see my doctor. She felt around my body for swollen lymph nodes and measured the ones she felt in my groin on both sides.

Dr. Malakoti confirmed, “Yes, we will need to get you into surgery for this biopsy as soon as possible.”

“How soon?” I asked.

“Probably within twenty-four to forty-eight hours,” she assured me.

I waited, not too patiently, for a call from the scheduler. Nothing. I called them twice a day. Nothing. A week of waiting. Nothing.

So I decided to go down to Seattle because my son needed me to babysit for his kids. His anniversary trip to Belize with his wife was more important to me than waiting for a phone call that wasn’t coming. Life goes on, doesn’t it?

Dr. Malakoti did take the time to message me about the surgeons’ decision to biopsy the right node instead of the left. And she emphasized that they haven’t found any cancer in my tests “at least, not at this time.”

Those are ominous words. What do you mean, “not at this time…?” Well, I’ve made it to age 76 without any cancer or its symptoms. Now I have symptoms. Now they are subjecting me to invasive tests. Now they tell me, “You don’t have cancer at this time.” So what does that mean? That cancer is a slow-moving train that may or may not collide with me someday? Everyone in the world can say that, can’t they? From the day they are born. How am I any different from other people? I have some hallmark symptoms of blood cancer. So they are treating me seriously.

I guess, since no one in the medical community will talk straight with me, I will have to wait for a definitive sighting of lymphoma, or lack of it, in my second biopsy.

I asked Dr. Malakoti directly when she examined me: “What are you looking for? What do you suspect? Could I have lymphoma?”

She moved around the room to get something, but did not answer my question. Maybe any form of speculation is strictly forbidden at this point. Maybe they will level with me when they have an answer.

So I return to patience and acceptance of what I cannot change.

Walking Through Cancer?/Part 7

                                 

                                                     Still Digging

Time flies. It’s March now, a long time to not know what’s wrong with me. But the medical community operates, sometimes, at a snail’s pace.

Gene and I drove back to Fred Hutch in Seattle for my second PET scan. We had another dinner out and stayed at the same hotel so we would be close by for the 8:15 am appointment. I needled my doctor to secure two (2) Ambien for me from the pharmacy. I am extremely claustrophobic, which is the principle reason for the prescription. They’re not really “coddling” me. They just want to avoid a disaster in the PET machine.

The nurse injected the radioactive liquid into a prominent vein and waited for it to circulate in my system. It usually takes an hour, but I was asleep and didn’t notice. They walked me into the machine and then walked me out. Gene drove me home where I had another long lunch and another long nap.

Today is March 18. I had a Zoom meeting with my doctor at Fred Hutch. What are my hopes? That they found no areas of concern and refer me back to my original hematologist, Dr. Julia at Providence oncology, and let her come up with an explanation. You can’t fault the doctors at Fred Hutch for thoroughness. They seem to have pulled out all the stops.

But I’m getting ahead of myself. This is an example of my “future-tripping,” which I’ve done too much of. Enjoy every moment I have. Today is sunny and 70 degrees. I will indulge in my “spiritual” weeding (oh yes, weeding is a spiritual exercise for me!) and be grateful for the sunshine.

Dr. Malakoti, Dr. Poh’s P.A., addressed me on Zoom and said that the second PET scan showed lots of lymph node involvement. So they want to do another biopsy of another node in my groin, near the last one they removed. It’s the fastest way to rule out lymphoma. Another one? The queen (lately I’ve been demoted to princess) of silver linings sees this added surgery not only as a probable end to all our uncertainty but also a chance to learn from my mistake the last time. After the surgery, go home and stay there for two weeks. Suspend all activities.

Waiting for the scheduler to call me for the exam with my doctor, my negative side internally whines that, since I live two hours away from Fred Hutch, going back and forth on Route 5 will be another weekly hassle.

“Oh Carter, I’m so sick of the Route 5 parking lot. Now I have several more trips down to Seattle to endure.”

But my son rescues me from myself momentarily:

“Endure? How about you put a brighter face on it? Instead of dreading the traffic, the pain of surgery and the waiting for results, why don’t you and Gene come down to Seattle for two nights and spend time seeing your grandchildren and having some fun?”

Out of the mouths of babes…

Walking Through Cancer?/Part 6

                                          “It’s a fluid situation.”

The limbo I’ve been in for half a year has been a challenging test for me. A test of dealing with the gray areas in life—the ambiguities— where we want answers to a problem but don’t get them, and we find ourselves at the mercy of our coping abilities.

There was a time when I would fold in like an accordion at the first sign of frustration or depression. If I was unhappy  about anything, I tended to run away. Just retreated into various forms of self-punishment that provided numbness for a time. But that was another woman.

I’m glad I’ve evolved into someone stronger. Personal heartache has followed me much of my life, but no better or worse than anyone else’s. Yet I lacked the tools to deal with it effectively. Mired in victimhood and self-flagellation, my self-absorption buried me and isolated me from being the best person I could be. Able now to see my life through a different lens, recognizing what a privileged and fascinating life I’ve led, has opened my eyes and filled me with a sense of long-overdue gratitude.

Dr. Christina Poh met with us on Zoom a week after my second bone marrow biopsy. Gene and I sat side by side on the sofa, holding hands. No matter what she told us, we knew that we had each other. That, in itself, has been a tremendous blessing. I am so fortunate to see the silver linings manifesting themselves everywhere. There’s nothing like what I’ve been going through to sear into my heart what matters most in life. And now I have time to live that learned wisdom.

Her first words to me were, “Well, Marilea, it’s a fluid situation.”

“What does that mean, Dr. Poh?”

“It means that we don’t see cancer in any of your tests right now. Not in the two bone marrow biopsies, and not in the lymph node biopsy, reviewed by NIH, where they found nothing. We’d like to do another PET scan to see if there’s any change from the one you had in November. Maybe those results will give us some new information that will explain your symptoms and give us something more to work with. But for now—today—you are cancer-free and we can be glad of that.”

“God, what a relief!”

“Well, we’re not going to say you have cancer when we don’t see it. Chemotherapy is poison, and we can’t justify infusing you with it at this point.”

A fluid situation…meaning, yes, it could change. The earlier diagnosis of L-HES, for example, can progress to leukemia or lymphoma without proper treatment. So, am I home free? Maybe and maybe not. But I FEEL wonderful, no lack of appetite or weight loss. If ever there was a time to live in the moment, it’s right now.

The aborigines in Australia operate on two time zones: now and not now. I’ll take “now” for my happy reality and let “not now” reveal itself another day.

Walking Though Cancer?/Part 5

                                                     The Waiting

Since my first bone marrow biopsy back in October, I’ve become more pensive than usual. Just taking it all in. I’ve never been seriously ill and now, seemingly out of the blue, I have a blood disorder. There’s no precedent in my family. This past year I’ve had to say goodbye to several friends, all of whom died from cancer. I felt sad to say goodbye to them, but it never occurred to me that I would be joining them one day.

So yes, regardless of what I may have, I have been thinking about death and what it would mean to me. Elisabeth Kübler-Ross describes in detail the various stages of coming to terms with death. There’s denial, anger, bargaining, depression and, finally, acceptance. The amazing thing is that I’m in acceptance now.

“Gene, I’m not afraid to die. I’ve lived such a rich and full life. How many people can say that?”

“Not many. Good for you, Babe. It’s the faith we’ve learned in our recovery rooms that will sustain us through this. Things are happening according to God’s plan. When we accept that without resistance, getting through it is so much easier.”

The fact is, we are all going to die sometime. And we don’t usually get to choose how. But if that’s what’s waiting for me, I feel so lucky to stare it in the face and prepare. Which I have gratefully done. My estate needed to be updated for one thing. I want the most important people in my life to be well taken care of.

At this point, I’m more concerned about my loved ones than I am about me. Whatever is creating havoc in my body will continue to do so for now. But grief is for the living. My family, close friends and I are on a jet which is in danger of crashing. I want to do what I can to ensure a smooth a landing for them. 

This place where I am—this space between living and dying—can be thought of as an enormous blessing. I can use the time for maximum benefit. And what a luxury, I feel so lucky. The prospect of dying has given me new and larger perspectives on the art of living, the art of dying, and the art of forgiveness.  It’s such a relief not to be mired in pettiness and all the emotions that make us smaller than we want to be.

To convert our energy instead into loving can make us so much bigger than we were before. 

For now, though, there’s still the waiting. And when the diagnosis comes, I’ll accept it. I’ll do what I can to get healthier. And then relax and let God do His work through me. Maybe I’ll get to live a lot longer. And maybe not. But whatever His plan is, I hope I will die as gracefully as I’ve tried to live, with deep gratitude in my heart for all I’ve been given.

Walking Through Cancer?/Part 4

                                                       Fred Hutch

I check in. Very dim lighting.  Not harsh, comforting. I look around at all the cancer patients, some with hair, some without. Some walking around with a mobile IV. I recognized that I was in a special world of sick people, just sick people and their companions, and I wondered whether or not I belonged there. Or if this mecca for compassionate care would become my second home.

I had to bring a stool so they could check for parasites. Possibly I’d been harboring some exotic larva since my honeymoon in the Amazon jungle in 1975.

First stop was the lab. Needle city, and roaring with activity. Needles frighten me, especially when they are left in my arm. This is always the worst part for me: the nurses digging around for just the right vein.

“This one is a sure bet,” I tell the phlebotomist confidently, as though I were in charge.

“No,” she noted dismissively, “it looks like it might roll on me.”

“Okay, wherever is best,” I concede, not getting my way.

So  the phlebotomist stuck me where she wanted to while I winced, and then retracted the needle but left the catheter in my arm. I hate the feeling of having a foreign object in my body, but I was aware that it was the means to knock me out during the procedure.

Which made all this bearable.

She took, I counted ‘em, nineteen (19) vials of my blood. Leave no stone unturned is their motto.

One really strange way that I know I have a blood disorder is when I observe my arms. My veins stick out like a weight lifter’s. That’s so unlike me, dainty little me. But it was easy, anyway, to find a vein.

Then on to my room for prep for my bone marrow biopsy. I entered the procedure room, where I met the kindest nurse alive.

“We want you to be comfortable, Marilea. So let us know if you need more sedation after we begin.”

Erin, the physician’s assistant who did the procedure, gave me a lidocaine shot in my hip. I felt that, but how many shots have I had in my life? It was nothing.

My nurse said,

“Okay, giving you the first vial of fentanyl. How are you feeling?”

“I’m still awake!”

“Okay, here’s a second vial.”

I didn’t thank her because I was out. But afterwards she told me that I was grimacing and showing signs of discomfort during the marrow aspiration so she added a third vial to my IV. Bless all the nursing angels I’ve encountered on this journey. Because of their care and compassion, I was unafraid of all the pain.

It was all so simple and faster than the procedure at Providence Hospital. It only took twenty minutes. My nurse called Gene at the hotel to pick me up, he was there in five minutes and whisked me home to Camano Island where I had a long lunch and an even longer nap.

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.