Walking Through Cancer/Part 18

                                          Testing My Mettle…Yet Again

Last spring when I had raging carpal tunnel syndrome in my hands AND a viral mouth infection so severe I couldn’t eat anything but pablum, I whined that “it never rains, it pours.” Well, those two maladies were a walk in the park compared to falling down the stairs and breaking my humerus three days before my first chemotherapy infusion.

“God,” I said looking up as though that were where He lived, “You are really testing me. Geez, isn’t t-cell lymphoma bad enough without having to cope one-handed with my arm in a sling?”

It’s a good thing I couldn’t see Him because I knew he was smiling, sure that I would meet this challenge just fine. And I would have slugged him, I was so mad.

At myself, of course. I talk about remaining teachable and I think THIS time my self-will has wrought a bad enough consequence to make me stop in my tracks. How did this happen? I failed to turn the night light on, was nearly finished barreling down fourteen steps in slippery socks, missing the last one, and plummeted onto my left side at the base of the stairwell.

My first thought: I will not be defeated by this. I got up and was grateful I could walk without pain. More gratitude: it was my left side and not the dominant right. I went to my phone and called 911.

Camano Island Fire and Rescue was there right away and whisked me off to Skagit Regional Hospital in Mt. Vernon. X-rays were taken, and I waited in the outer area for my friend to come and take me home. Oh, did I mention that Gene had just that evening flown to San Francisco for the memorial of a friend? Timing…

I was quite alone in my house, but not for long. The front door was constantly revolving all weekend with friends coming over to teach me how to wear a sling, cut up vegetables, open bottles for me, perform a myriad of tasks reserved for two-handed people. I’m so grateful for them.

My son took me to my first infusion the following Monday. He held his tongue, but I knew he was furious that I could allow such a disaster to happen at the start of my chemotherapy. When Gene flew back the next day, more dismay and head-shaking that I could have been so careless.

So there you have it. This occurred on October 17, just eight weeks ago. It was fractured badly and the ice cream is nearly off the cone. Still quite painful, it’s not going to heal on its own. So I saw a shoulder surgeon this week and he’ll schedule surgery for as soon as possible, when treatment is over.

The sooner the better, so I can get through rehabilitation therapy and hopefully get back to paddling my kayak this summer. Am I too ambitious? Nah.

And I’m nothing if not determined…

Walking Through Cancer/Part 17 continued

                                                         Healing

When I was seeing a counselor at work in Virginia, she suggested I try a 12-Step group called Al-Anon.

“Oh no, that’s not for me,” I responded, convinced that I had all the answers to Annie’s problem. Yet I was desperate for help, and was willing to try anything, so I began attending a regular Saturday morning meeting. But I was essentially paying lip service to a program I was too arrogant to believe in. I felt I had all the answers and was unable to accept her substance use disorder as a disease I had no control over.

The first three steps of all the 12-Step programs are the “God Steps.” We admit we are powerless over whatever it is that we are trying to free ourselves from; in my case, trying to control my daughter. But I needed to learn to let go of Annie. “Let go or be dragged,” they say in Al-Anon.

After six years of attending meetings, and still unable to save her with the only kind of love I could offer, I suffered the clinical depression I spoke of in the previous segment. That’s when Gene and I left Virginia and moved to New Mexico. We enjoyed a decade of living in “the land of enchantment.” But Annie was still floundering, and I stepped up my drinking. I couldn’t bear the pain of losing her.

My son and his wife had moved to Seattle for work, and they started having children.

“Mom, please think about moving up here with us so you can be closer to the children and watch them grow up.”

This was a no-brainer for me and Gene. We had spent the early years of our lives together paddling canoes all over the country, so being near water to continue that pursuit would complete us. It was the one thing that was missing in the desert of New Mexico.

I quickly sold the condo I owned in Virginia and bought a nice home on Camano Island, an hour north of Seattle. Gene wasn’t quite ready to let go of his orchard and the sunshine of New Mexico, so we went back and forth between our two homes for four years. But we eventually got tired of all the fence-sitting and made a decision to sell our little pueblo house to live full-time on Camano Island.

Life was good. I had begun publishing award-winning memoirs while still living in New Mexico, and was about to publish my second one in 2020. Having joined Story Circle Network in 2013, I used their publications to write  a number of short pieces and see them in print. Story Circle Network is an outstanding and versatile organization founded by Susan Wittig Albert back in the 1990’s, specifically as a venue to encourage women to find their voices and write.

Between that and publishing my memoirs, the catharsis I needed to open my eyes and begin the healing process had begun.

Walking Through Cancer/Part 17

   No Spirit At All

Learning to live well is a skill that many men and women aspire to, especially as we grow older. Some of us are aware of the wreckage we left behind if we were burdened with demons like alcoholism or other forms of substance abuse. Even addictions like gambling, sex and workaholism can interfere with a more functional life.

Ever since I was a teenager, I had struggled with eating disorders, which seems to be a common theme among many young people who grow up in an alcoholic home. That led me back in the 1960’s to diet doctors and amphetamines, which were easy to acquire. And I loved them because they relieved me of my depression, the underlying cause of my misery.

I, nevertheless, proceeded through life doing pretty much what my parents expected me to do: marry a suitable guy and raise children. My husband, three children and I lived a privileged life in the Foreign Service, living overseas for fifteen years. But I wanted a career, and my Cuban husband did not approve. So rather than work it out for the sake of us all, I insisted on a divorce and moved back to Virginia with the children.

This was a very heady time for me. I landed a job teaching English as a Second Language in Arlington Public Schools, and threw myself back into the teaching career I had begun years earlier in Nicaragua. My children were ten, twelve, and fourteen at that time, and I essentially left them alone to raise themselves. Their father was very generous with child support, but he was so angry about the divorce that all he gave us was money. He refused to share custody with me. And that did a grave disservice to our children.

And so continued a period of years where I received great satisfaction in the classroom. But I was a far less successful parent. The kids were hurting badly, but did well enough on the surface for me to rationalize their pain. Annie, my middle child, however, turned to drugs when she had barely graduated from George Mason University, and has been in and out of that hellish life for twenty-two years. Hence, the wreckage I spoke of. I did have her in therapy early on for about ten years, but to no avail. I eventually suffered a nervous breakdown from my repeated attempts to “save” her, and took early retirement from a job I adored. Another price to pay for my self-absorption.

My partner and I moved to New Mexico to start over, and enjoyed a decade running an orchard and selling produce at the local markets. But I had years earlier in Virginia traded my food obsession with alcohol and embarked on thirty years of drinking. I was a pretty functional alcoholic, never missed a day of work, but no more evolved spiritually than the man in the moon.

My real work was soon to begin.

Spiritual Levitation

“The serenity I am offered in Al-Anon is not an escape from life. Rather it is the power to find peacefulness within life.

Al-Anon does not promise me freedom from pain, sorrow, or difficult situations. It does, however, give me the opportunity to learn from others how to develop the necessary skills for maintaining peace of mind, even when life seems most unbearable…

Serenity is not about the end of pain. It’s about my ability to flourish peacefully no matter what life brings my way.”

In the movie, “The Shack,” Mac has a dream and in it he meets God. Mac had recently lost his young daughter, and in his anger and bitterness he lashed out at God. Who else to blame? God (a woman in the movie) came right back at Mac with Her own defense: She didn’t orchestrate all the misery on earth: Ukraine, The Holocaust, children starving in Nigeria. “Don’t blame me for all that,” She said.” My purpose is to help you rise above it.”

Wow, those are powerful words, and they remind me that I am not alone in my struggle, that God (or any form of a Higher Power) wants to partner with me if I accept him.

Al-Anon has the same purpose in my life. God doesn’t have the power to return my daughter to me. But if I continue my daily practice of gratitude, accept what I don’t have the ability to change, and have faith that God’s plan is unfolding for a greater good than I may ever see, I can live peacefully and even joyfully, savoring all the goodness that is in my life. It’s my choice.

Walking Through Cancer/Part 16

                              

                                         The Graveyard Shift

This is bizarre. It reminds me of when I had carpel tunnel syndrome last spring: I was in such burning pain that I couldn’t sleep. But that passed with time, and this insomnia will, too.

My new sleep schedule: I fall asleep between 7:00 and 9:00 at night; then I’m up at 11:30ish; I watch videos until my eyelids start drooping, usually a couple hours; then fall back to sleep until, if I’m lucky, 4:00 am, when my day begins. I drink a mocha, check emails, etc. At 5:00 I eat breakfast; at six I can start the work of the day: my writing. This consists of my daily gratitude journal and for the past six months my cancer diary. It’s pretty long, over twenty-five chapters, both before and after my diagnosis.

By 10:00, I start to fade and take a nap, about an hour. But before I nap, I eat a sizeable protein snack. After I wake up, I work on my computer until 12:00, lunchtime. Well, I guess some things coincide with real life! I go downstairs to watch Nicole Wallace, and even though the news is depressing, I love to listen to her  guests, especially Tim Miller.

Then I’m ready for another short nap, another snack, more writing, and then dinner with Gene. So, you see the routine is trying to glide into some semblance of normalcy. If I could just sleep through the night…

Why the insomnia? I only take prednisone for five mornings in a 3-week infusion cycle, so I’m not convinced it’s that, though it has a monstrous reputation. Then I read an article called “Why Do Cancer Patients Have Anxiety?” Geez, ya think?

Out of boredom, I started playing Dr. Google again. I read that my type of non-hodgkins lymphoma is not only incurable but has a very poor prognosis. Tell that to the lady who whizzed through 6 miles of Disneyland without getting tired!

The truth is that they are making huge strides in cancer research every day. Right now I’m undergoing my first line of treatment. My oncologist also has me in a clinical trial concurrent with my chemo. The theory is that if I go into remission, it might last a few years longer. Dr. Poh gave me a gold star when I saw her on Monday.

I believe in my heart that remission awaits me. I just don’t know. What I do know is that t-cell lymphoma is usually “refractory,” meaning it will come back with a vengeance, resisting the chemo I got before. This is when I’m glad it’s nearly 2025 and not twenty years ago. There are a number of new treatments they will surely try. But, as usual, I’m getting ahead of myself. I’m only halfway through this first line of treatment. February 3 is my last infusion. We’ll see what the PET scan shows, if  Dr. Poh can claim me to be in remission or not.

Fingers crossed!

Walking Through Cancer/Part 10

One Tough Old Bird

Nearly three years ago, I tripped on a towel in our bathroom and fell, whacking my head against the porcelain tub. I broke six ribs, had a pneumothorax, and a teardrop fracture in my neck.

It was my fault, moving too fast in an unlit room, I made a promise to myself: I can never fall again. Period. Well, “Promises are like piecrusts…” Is that how it goes?

Five days before my first chemo infusion, I made the same mistake. I had a fall that resulted in a significant fracture of my humorous (upper arm). OMG, I can’t believe my timing! I’ve started out in a sling and the orthopedist saw me yesterday. Because of the cancer treatments, we’ve elected to avoid surgery for now and let it heal in the sling for six to eight weeks.

“Marilea, the human body is a remarkable machine. It will heal itself if we are patient and let it. If you use the sling for the next two months, slow down, and use the time to rest, it will eventually heal itself. You will need to do regular exercises and maybe work with a therapist regularly, but I think we can avoid surgery, which is problematic at your age, not to mention your cancer treatments.”

“Thanks, Doc. I’ll learn to be patient and let my arm heal on its own. See you next week for a checkup.”

Ladies, have you ever tried to get dressed, pull your pants down to go to the bathroom, floss your teeth, cut vegetables or an apple, just live your life the way two-handed people do? It’s damned inconvenient. And slows me down, probably a good thing.

So here’s another lemon in my life: the broken arm.

Lemonade? It could  have been SO much worse. I could have had a concussion, broken a hip, compromised my legs and ability to walk. Walking, oh wow, that’s number one on the gratitude list. If that were compromised I might have just had to put everything on the cancer side of the drama on hold until I could walk again! So lots of silver linings to pay attention to and deeply felt joy and gratitude that it’s just a broken arm. Oh, another glass of lemonade? My ability to see all the silver linings and allow them to elevate my spirit.

The spiritual part of this journey is absolutely essential to holistically healing my body. My alcoholism recovery is the basis, of course, for all this healing and has saved my life. Minimal whining, endless joy and gratitude, A deeply held faith that life is unfolding for me as it was meant to. I’m in God’s hands. And however much time I have left on this earth, I will live it to the best of my ability, and accept, gracefully accept, God’s will for me.

Amen, and stay tuned for the continued cancer part of my saga!

Walking Through Cancer/Part 8

                                           Preparing for the Big Day

I have spent a year with night sweats, my first symptom, not counting the white blood count that called for a hematology referral. The mouth sores began with a vengeance in April and have stopped. Just to try and keep them at bay, I gargle with salt and baking soda every night after I brush. Good dental hygiene is important with cancer patients. Don’t I have enough to deal with without also losing the few teeth I have left? J

And the mouth infections! In all my 76 years and with all my addictions, I’ve rarely had anything to prevent me from eating. I lost five pounds the first week and I can’t afford to. So I’m trying to avoid them.

They called from Fred Hutch yesterday and have to push my clinical trial back one week, to October  14.

“Do I need a driver every time, Kiana?”

“Yup”

“Well, getting a driver is not always easy. Gene will be in San Francisco on this new date. If I didn’t have a son in Seattle, it might be more difficult to find someone at the last minute. This is why I need you to give me a schedule for my treatments so I can give my friends options. They have lives, too.”

“I know, Marilea, and I’m sorry. But Dr. Poh needs to see how the trial pill works before she figures out how to schedule the infusions moving forward. And we’ll try to work around your week at Disneyland over Thanksgiving.”

“Thanks, Kiana. I know you’re doing your best. And I appreciate your efforts to accommodate me.”

After months of blood tests and bone marrow biopsies, I feel like a pin cushion. And now I’ll be a “holy” lab rat! “Clinical trial” is just an idea to me now; I have no idea what to expect. But I do know that the results will help future patients with my rare form of cancer. And helping others makes it all worthwhile.

I’ve lived with this uncertainty for about a year. How have I handled all the stress? First of all, I’ve been strengthened by my recovery, full of gratitude for the wonderful life I’ve been given, and this attitude keeps me grounded.

Life sometimes throws us curves, and how we respond to them begins in our head. It doesn’t matter what it is. I won’t even go into what a bad two years this has been for me, not counting the cancer. Just awful. And if I didn’t have the tools of recovery to work with, I’d likely be sitting on the pity pot whining about what a trial my life is. But to what end? How does that attitude solve anything?

I will use all these tests to make me stronger. Every day I pray to accept God’s will for me. My faith elevates me from all the stress and discomforts. I believe I’m going to be fine.

Stay tuned!

Change Is Good

From the blue Nar-Anon pamphlet:

Changing Ourselves

“Addiction is like a chain reaction. It is a disease which affects the addict as well as the family members, friends and co-workers. We try to control, cover up, and take on the responsibilities of the addict. The sickness spreads to those of us who care the most. Eventually, we begin to feel used and unhappy. We worry, lose trust and become angry. The addict blames us and we feel guilty. If only something or someone would change!

When we discover Nar-Anon, we find others with the same feelings and problems. We learn we cannot control the addict or change him. We have become so addicted to the addict that it is difficult to shift the focus back to ourselves. We find that we must let go and turn to faith in a Higher Power. By working the steps, following the traditions and using the tools of the program, we begin, with the love and help of our Higher Power and others, to change ourselves.

As we reach out for help, we become ready to reach out a helping hand and heart to those in need of Nar-Anon. We understand. We do recover. Slowly, new persons emerge. Change is taking place.”

Though I have changed and grown through my work in the program, I. of course, still love my daughter and am available to help her if she reaches out to me for help. The difference is that I’m a healthier person now and am able to make the tough choices I couldn’t make years ago. I pray she finds the strength to come back to her family. We can’t get back the lost years, but I still have hope, like the warm sun shining on my face, and keeping my love strong.

Positive Persuasion

From Each Day A New Beginning, September21

“Praise and an attitude of gratitude are unbeatable stimulators…we increase whatever we extol.” ~Sylvia Stitt Edwards

Our attitude in regard to any situation attracting our attention influences the outcome. Sometimes to our favor, often to our disfavor if our attitude is negative.

Thankfulness toward life guarantees the rewards we desire, the rewards we seek too often from an ungrateful stance. The feeling of gratitude is foreign to many of us. We came to this program feeling worthless, sometimes rejected, frequently depressed. It seemed life had heaped problems in our laps, and so it had. The more we lamented what life “gave us,” the more reasons we were given to lament. We got just what we expected. We still get just what we expect. The difference is that the program has offered us the key to higher expectations. Gratitude for the good in our lives increases the good…”

It’s hard for me to improve upon these words. Except to say that my daughter is still lost to me after 22 years in the world of drugs and all that it accompanies. As she has gone deeper into the weeds of that life, my grief over losing her has transformed itself into a better  place, a place that works for me. (read a great Al-Anon book, Opening Our Hearts, Transforming Our Losses, for sale on Amazon).

When my nightmare began all those years ago, I was incredulous that this was happening to my daughter, as though she were any different from all the vulnerable young people out there. She wasn’t and still isn’t. The more I fought to save her, the more my own health and well-being deteriorated.  After several years of doing everything I could think of (much of it misguided help), I finally got the message that I was powerless over her disease. And that’s when I started to turn toward the light.

The miracle of all the 12-step programs is assuring us that we have the power to change. I’m only as miserable as I make up my mind to be. In the beginning, I blamed all that misery on my daughter’s poor choices, of course, feeling more victimized than ever. But when I gave up that martyred attitude, and took back my own power, my life started to work better for me. I never stopped loving her and praying for her. But I have two other children, grandchildren, a loving partner… and the list goes on.

Every morning when I wake up, where should I put my focus? Should I fall back into bed and immerse myself in a mother’s endless grief? God knows I’ve wanted to often enough. Or should I focus on those kids and grandkids who need me now?

“The Road Less Traveled”

I think we, who are willing to be in this room and undergo personal change, are brave souls.

When I joined Al-Anon, I was in my Fifties, and anxious to save another person I loved.  But oh what a joy it’s been to let go of that obsession, which was becoming so shrill and counterproductive.

I was relieved to turn the focus back on myself and learn that my faulty attitudes were the source of my pain, not the people around me.

Regarding the amends steps, it’s possible to overuse them, just as we might exaggerate our negative defects in the 4th step. I’ve done both! That’s why it’s so important to understand the purpose of amends: reaching personal freedom.

These are intended to be hopeful steps, not self-flagellation. Making this list and then acting on it is just another way to weed our garden. My husband’s always reminding me to weed close to what we’re growing, so that nothing interferes with the growth of the plant.

Making amends is not always pretty, and rather than freedom I sometimes look for forgiveness and closure. With my daughter, Annie, she threw them right back in my face. So I knew I was on the wrong track to expect absolution from her, and my sponsor helped me appreciate my efforts and then let them go.

My real reward has been surviving that loss without the need to punish myself for it.  Truth is, I’m really not that important! Things happen in life, and it’s not always my fault.