Find Something To Smile About

Silver linings are everywhere in our lives. I try to appreciate them when I see them. My family has lived through four generations of alcoholism, but it wasn’t until my daughter was stricken with substance use disorder that I was motivated to go into serious recovery for myself. Losing her all these years to this cruel disease has been heartbreaking, and my serenity has come at a very high price. But though I’ll never get over these lost years with her, I like to think that she would be glad that I’ve survived and am learning to live well. This is how I honor her memory. She’s left a few flowers along the way, and I’m grateful.

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.

Detachment 101

“Detachment is not detaching from the person or thing whom we care about or feel obsessed with.

Detachment is detaching from the agony of involvement.”

Boundaries…boundaries…boundaries. Where do I end and the other person begins? A strong sense of self enables us to set clear limits with others. I was terribly enmeshed in my daughter’s life; I had never separated from her in a healthy way. Because we were so alike, I identified with her and felt overly responsible for her messes. Her problems became my problems, and it never occurred to me to let her tackle her own issues, both for her betterment and my own.

But thankfully my work in recovery has helped me face myself in the mirror and make some important changes. I made the necessary separation, first of all, from her. I no longer feel the “agony of involvement,” as I’ve let go of her illness and the ensuing consequences of her substance abuse. I can’t save her from herself. I can only love her and be here for her should she choose to walk with me in recovery.

What Makes Rainbows?

From Courage to Change, March 14:

“One beautiful day, a man sat down under a tree, not noticing it was full of pigeons. Shortly, the pigeons did what pigeons do best. The man shouted at the pigeons as he stormed away, resenting the pigeons as well as the offending material. But then he realized that the pigeons were merely doing what pigeons do, just because they’re pigeons and not because he was there.

Active alcoholics are people who drink. They don’t drink because of you or me, but because they are alcoholics. No matter what I do, I will not change this fact, not with guilt, shouting, begging, distracting, hiding money or bottles or keys, lying, threatening, or reasoning. I didn’t cause alcoholism. I can’t control it. And I can’t cure it. I can continue to struggle and lose. Or I can accept that I am powerless over alcohol and alcoholism, and let Al-Anon help me to redirect the energy I’ve spent on fighting this disease into recovering from its effects.

It’s not easy to watch someone I love continue to drink, but I can do nothing to stop them. If I can see how unmanageable my life has become, I can admit that I am powerless over this disease. Then I can really begin to make my life better.”

My recovery has been, among other things, about redirecting my energy into a positive force for my loved ones and me. Before I learned the tools of recovery, though I appeared to be content and doing well, I was deeply troubled and unhappy on the inside. Then, when my daughter  became a substance abuser, it all boiled to the surface. I love my daughter very much, and I would have done anything in my power to save her.

There’s that word “power” that we hear so much in the recovery rooms. And that’s good because power and ego so often go together, and I’ve had to learn to let go of both of them. I spent several years trying to save her, but I made many mistakes and in the end was not able to influence her choices. Just like the pigeons, she’s gonna do what she has to do. I can only love her and be strong for her if and when she goes into recovery. I am, therefore, concentrating on saving myself. And if it weren’t for my daughter, I probably wouldn’t even be doing that. Beauty is often born out of loss. I still have a heart that can love—and the eyes to enjoy the beautiful sunsets where I live in Puget Sound.

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.

“God, Grant Me The Serenity To Know The Difference…”

From Each Day A New Beginning, March 23:

“’On occasion I realize it’s easier to say the Serenity Prayer and take that leap of faith than it is to continue doing what I’m doing.’

Most of our struggles, today as in the past, are attached to persons and situations we are trying forcibly to control. How righteous our attitudes generally are! And so imposing is our behavior that we are met with resistance, painful resistance. Our recourse is now and always to ‘accept those things we cannot change, and willingly change that which we can.’ Our personal struggles will end when we are fully committed to the Serenity Prayer.

‘The wisdom to know the difference is mine today.’”

Oh yes, the wisdom to know the difference…how often our egos get in the way of living well. We want what we want when we want it! We want our substance abuser to give up drugs and come back to the living. If only that choice were in our hands…

But it’s not. Only substance abusers have the power to reach for their own recovery…and we have the power to reach for our own. That has been my choice for several years now, and I’m learning to be happy despite losing my daughter to the living death of heroin addiction.

A good friend told me that ego is what separates us from God and each other. Ego (Easing God Out) is often our enemy and keeps us from the serenity we so desperately long for. So I’ve learned to turn my pain over to God (Step Three), to “let go and let God,” and that has made all the difference in my life.

Living In The Solution

I messaged a friend on Facebook: “Oh, God Bless, Maryann, my heart goes out to you and all of us mothers. I often say in my book and on these sites that I’m grieving a living death because my daughter is not the person who’s walking in her shoes. She’s split right down the middle. Anyway, we all have different stories, but some parts are so familiar. My books are all about finding solutions for myself, and I hope they help you too. One thing I’ve learned on this difficult journey is to live in the solution, not in the problem. That’s how I’ve learned to be happy. Hugs to you!”

From a Nar-Anon handout: “People like myself whose problems have brought them to the point of despair have come to Nar-Anon to seek advice and find solutions. As soon as they attend the first meeting they feel like they have come home and feel like they are among people who really understand. And fortunate is the newcomer who finds a group that permits such expression. It gives those who have gone before them a way to give encouragement and hope. The newcomer discovers that it is by giving and receiving in our sharing that we are able to heal ourselves, and slowly we are able to regain control of our lives again.

But still more fortunate is the newcomer who finds a group that does not allow such unburdening to continue meeting after meeting. There is work to be done; Nar-Anon is not a sounding board for continually reviewing our miseries, but a way to learn how to detach ourselves from them.

A Recovery reminder:

I will learn by listening, by reading all the Nar-Anon literature as well as all good books on the subject of substance use disorder by working and trying to live the 12 Steps. The more I read and study the more knowledge I receive. Knowledge is power, and I will be able to help myself as well as others.”

Surround Yourself With Love, And Not Just On Valentine’s Day!

My recovery work over the years has brought me out of isolation and pushed me into the circle of love in this picture. I have learned many things in my recovery program, but the most important has been placing a greater value on my worth, my needs and my wants. Learning to set boundaries is another way to take care of myself, letting others know what is and what isn’t acceptable to me. This tool has made my relationships healthier. Without a daily practice of self-care, what shape am I in to interact with those around me?

“Progress, not perfection,” to be sure, and we all have bad days. But I’m grateful to have found a sound guide for living in my recovery program. It doesn’t take away the pain of struggling with my daughter throughout her substance use disorder. But it does offer coping strategies that encourage me to focus on what I can control in my life. No longer drained from fighting a battle I can’t win, I feel energized to move on and celebrate the blessings God has given me.

It’s all a matter of perspective. Attitude is everything.

The Challenge Of Change

From Each Day A New Beginning, January 8:

“’When people make changes in their lives in a certain area, they may start by changing the way they talk about that subject, how they act about it, their attitude toward it, or an underlying decision concerning it.’ ~Jean Illsley Clark

Acting “as if” is powerful. It leads the way to a changed attitude, a changed woman…Each positive change we make builds our self-esteem. Realizing that through our own actions we are becoming the kind of women we admire gives us the strength, in fact, encourages the excitement in us that’s needed to keep changing…Each gain makes the next one easier to attempt.

I will accept an opportunity today to act as if I can handle a situation I used to run from.”

I think, as  any of us grow older but not always wiser, that it becomes easy to descend into a passive state of “Oh well, what’s the use? I’ve tried everything I can think of to make this problem go away, and nothing works. So I guess I’m stuck with it.”

I’ve certainly been there, but eventually I got lucky. I got so tired of my misery that I became willing to try something else. That was the key. Willingness to change and do something else. It worked.

Now I’m happy, joyous and free of the demons and obsession that were destroying my life. I had to work hard for this. But it was time well-spent in recovery.

I’m in two 12-step programs, and they all have one thing in common: helping those of us who suffer to recognize our own part in our misery, to work through all those demons, and hopefully learn to be accountable and free of guilt. The freedom that follows is indescribable. And though I still carry the sorrows that brought me to the rooms, I’ve learned to view them through a new and different lens.

Life can be a glorious adventure. I’m so grateful for my recovery.