Acceptance

Cancer?Diary/Part 8

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“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.

Writing As A Tool To Heal

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“Oh I hate to write, Marilea. It’s like pulling teeth. And I’m afraid of what I might find.”

“Bingo, girlfriend, that’s the whole point. Discovery. I’ve been writing my heart out for more than a decade, and what I’ve learned about myself in the process could fill a book. In fact, it did. It filled three books and countless essays.”

“Yeah, but you’re a good writer and I’m just a hack.”

“Whoa! There’s all that judgment we keep heaping on ourselves. It doesn’t matter if you write well or not. The work is putting your words on paper. How they are received is also not important. What you do with those words is not important. Just get them out of you and examine what’s on the page. Maybe you will learn something new.”

So my friend and I went back and forth about the value of writing. She said she’d get back to me.

But I learned many things about myself from reading my early writing. I learned that I was extremely angry and judgmental toward my daughter. How could she be behaving so badly? And then I wrote about my own youth and realized that we were mirror images of each other.

Discovery.

I learned that I needed to be in the rooms as much as my daughter, if not more, because there were two of us who were sick. And that was the beginning of my healing. My words on the page stood out like red flags everywhere. That’s when I stopped being so angry or judgmental. If I could forgive myself for my sick soul and the behavior it reflected, I could certainly forgive my daughter. And that smoothed the way for her to come back to her family when she was ready.

Our lives rarely enjoy Hollywood endings. My story has not ended well for my daughter. But my writing has helped me cope with that too. The two of us might have fallen down the rabbit hole and never returned. But the catharsis I experienced from being honest on the page has freed me to look beyond my daughter and see my life in perspective. I have a wonderful life, surrounded by people I love. And though I miss my daughter and feel the loss of her every day, I can transform my grief into something positive: joy and gratitude for all that’s left in my life. This book, Opening Our Hearts, Transforming our Losses, is a great resource for those who don’t know what to do with their grief. Take a look.

Playing God

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Recovery in the Program, time and the perspective it brings us, has given me a lot of new information. My own recovery has also graced me with a healthy amount of humility. I used to confuse humility with humiliation. I used to think that admitting my faults would produce shame in me and threaten my self-worth. But in recent years I have a different understanding of this word.

Having taken the Fourth Step (“Made a searching and fearless moral inventory of ourselves”), and later the Seventh Step (“Humbly asked Him to remove our shortcomings”), I began to see myself in a healthier light. I began to see myself in relation to my higher power. I am just a speck in the universe, no more, no less. This need to stay right-sized keeps me out of trouble. I’ve been playing God for much of my life. It doesn’t matter anymore why; what matters now is that I remain ever mindful of the amount of power I have over others and stop trying to play God with them. They have their own Higher Power, and I’m not It!

Walking Through Cancer?/Part 6

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                                          “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.

Find Something To Smile About

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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.

Detachment 101

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“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?

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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.

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

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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

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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!

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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.