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.

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.

                                        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.

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.