Acceptance

Waking Through Cancer?/Part 9

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                                                    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.

Darkness And Light

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From “The Forum,” August, 2015, p. 19:

“I’m so grateful I found a way out of sadness, a way to take care of myself each day, and a relationship with the God of my understanding, who will never abandon me. The pain I’ve felt in the past is equal to the measure of joy I feel now.”

That’s quite a mouthful. Whoever wrote those words in “The Forum” is saying that somewhere between despair and happiness she or he did some work, found some answers. For me, anyway, I entered into a state of grace. I quite deliberately let go of my pain, which served no further purpose in my life. The lessons it taught me have been learned. I’ve put my sadness in a back drawer—and replaced it with positive thoughts that keep me motivated to reclaim my life, my remaining loved ones, and keep my heart ticking.

Grief is not a badge I wear anymore.

Joyfulness is.

The Power of Faith

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From Hope For Today, June 13:

“…What I had overlooked in Step Two was the word ‘Power.’ The day I started placing my attention on that Power instead of on insanity, I began to see miracles in my life. One such miracle was my ability to talk about my fears in Al-Anon meetings. Other miracles included taking the Twelve Steps that lead me to serenity, and engaging in the process of forgiving and healing.”

It has taken many years of hearing Step Two read at meetings for me to really hear the word ‘Power.’ Now I realize how much more awesome my Higher Power is than this disease. Instead of dwelling in fear—and listening to my worst instincts—today I am striving to pass on the miracles of recovery to my children and grandchildren. If we keep doing this then, maybe not in

my lifetime but in theirs, we will see a change in how substance use disorder is treated around the world.

“Aye, There’s The Rub…”

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The Serenity Prayer (Part 3)

 “Courage to change the things I can…

When my ego is involved and there’s a calculated risk, I’m going to be gutsy, not courageous. It takes guts to ski a steep trail; I alone will be rewarded. Courage is different. There is always a parenthesis of fear in Courage; the risk becomes minor. This parenthesis remains a void of fear until it is filled by God. There is no ego in a courageous act. Courage can ask for help. It is often something done for someone else, or it may be something I am not attracted to doing at all. I may lose by doing it. The courageous act is often the unpopular choice, to do or not to do. The results are seldom only mine. It requires more of me than I want to think I can do, alone. After it is finished, gratitude to someone or something is usually in order. Courage requires a moral strength not of myself. This strength is given by faith.”

EGO—Easing God Out—is my enemy in many ways. It makes me willful and arrogant. It’s the great separator—of me from people, of me from God. When I let God back in again, my life and my relationships seem to work better. And God has always given me the courage to do what is difficult in relation to my daughter. My faith in Him has given me the strength to do what I believe is right, regardless of the consequences. I believe things are unfolding as they are meant to. When I surrender to this belief, I am at peace.

Taking Ownership Of My Own Recovery

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Many people are not strong enough to battle the terrible force of substance use disorder on their own. Application of the Twelve Steps had proven successful over and over again since they were put together by a couple of alcoholics and their friends back in the late 1930’s. Substance abusers need help; some say they need spiritual help. Our society is full of naysayers—skeptics who eschew these programs that are found in every major city across the country, and in big cities, in many of the churches, meeting three or four times a day. There’s a reason for the popularity of Twelve-Step programs: they work for many people. So I promised myself I would try harder now. My daughter was worth it. My daughter was worth it?

There is no one place on this journey to pinpoint where I discovered that I was worth it. I knew what a flawed human being I was. I was aware of my mistakes along the way—big ones and little ones.

But as I was starting to embrace the principles found in these Twelve Steps I was reacquainting myself over and over again with my own humanity and feeling my self-worth solidify with roots into the earth. None of this growth in me would have occurred if my daughter’s illness hadn’t pushed me onto this path. And I would always—still—reckon with the survivor guilt that has challenged my right to be happy while my daughter still struggles with this cruel disease.

There are many who view Twelve-Step groups as cultish and unattractive. There’s such a powerful stigma in our society against substance use disorder in all its forms that, I suppose, families of substance abusers suffer from guilt by association. Early on in my recovery my sister once said that it must be nice to have “those people” to talk to. But as she’s watched me grow and change these past few years I think she’s developed a healthy respect for the Program.

To this day, though, she has never discussed with me the dark side of our father, the alcoholic. Maybe she never saw his dark side, as I did. To her, he was the best father in the world, and I have no need to invade that sacred place where she holds him in her heart. In fact, I agree with her. He was a very loving man who passed on many gifts to his children and grandchildren. Yes, he was sick, and he died too young because of it. But just as I have forgiven my mother for any ways she may have hurt me so have I lovingly accepted my father’s illness. And in learning to forgive my parents and others who have wounded me in my life, it has become easier for me to forgive myself for my own shortcomings and the part they played in hurting my own children.

I, being a substance abuser, a daughter of one and a parent of one, have found myself quite at home among these seekers of peace and serenity. I’ve been in the right place for twenty-three years now, and I cannot begin to tell you the gratitude I feel for the wisdom in this simple program that has helped me to look forward to the sun coming up every day—and to embrace my life in its entirety.

Walking Through Cancer?/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.