Author: Marilea C. Rabasa

Walking Through Cancer/Part 17 continued

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                                                         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

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   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

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“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

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                                         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 15

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                                                 Reprieves and Vacays

Tickets to Disneyland had been purchased months ago, long before I started chemotherapy with a broken arm. But Dr. Poh assured me that she would try to work my infusions around the trip to California. And she did. I was determined to weather all the discomforts of airplane travel with a broken arm in a sling. My cancer team not only cleared me to go, they arranged the chemo cycles around it so that I would be feeling my best during that week. I’m just amazed by the humanity of the staff at Fred Hutch Cancer Center. I’m much more than just a cancer patient in need of a remission to enjoy a few more years. I also want to have fun with my family as often as possible, and they fully cooperated with my wishes.

We flew into Santa Ana Airport the Saturday before Thanksgiving and spent a whirlwind week in Los Angeles. Sunday we drove to Santa Monica to have lunch with Gene’s sister. That’s a lovely town. Tuesday we visited the La Brea Tarpits in downtown LA, where the remains of Ice Age animals had been found by paleontologists. On Wednesday, we returned to LA for a visit into Universal Studios. A bit overwhelming for two old fogies like us. We took a few rides, but really enjoyed the studio tour. I was amazed at my stamina after walking three miles. But my feet were starting to swell.

The next day was Thanksgiving when my family flew in from Seattle. We all met at a restaurant for turkey and all the fixings, which tasted great. We said our goodbyes and planned to meet the next morning at Disneyland.

Six hours of fun and frolic, I don’t remember when I’ve had so much fun. My son was especially solicitous and protective of me, particularly after he saw my feet. Not painful, just unsightly. By 6:00, we had walked six miles and I was still full of energy. My son was amazed at my stamina. But my feet were so swollen from edema that I had to put on some uncomfortable sandals just to keep walking. We all went out to dinner, and I surprised and delighted my grandkids by taking my hat off.

“Oh wow, Bela, you look amazing!”

“You look like Captain Picard!”

Cameras flashing, I had finally overcome my shyness at being bald. I proudly sent a picture around to my friends to see their reactions. I’m not ashamed or embarrassed. It’s my sign of hope that I may stay alive.

My feet required ice and elevation to return to normal. And flush out my kidneys with lots of water to shed the edema. I’m not sure what the lesson is for me. I can’t walk long distances?

A totally worthwhile trip. I’m so glad I made it. Life is too short to put things off. You never know when yours will end. And I’m nothing if not determined.

A Time To Give Thanks

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Dear Friends,

It’s that time of year again—that challenging time of year—when holidays and all they symbolize beckon us into that place of remembrance. This is the time of year when I really step up my program.  A spirit of gratitude has been the one tool that has always worked to elevate me from my despair around my daughter. So I hope that we can bring that spirit into our lives during this season of thanksgiving and count our blessings. We’ve all lost loved ones one way or another to the cruel disease of substance use disorder. But the sun still comes up every day and sets every night. Life goes on—and we with it. Let’s keep hope alive and live our lives as best we can. Blessings to you all!

Walking Through Cancer/Part 14

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                             Pink Clouds Don’t Last Forever

It would be so nice if they did.

I’ve had two chemo infusions, and the first one was such a breeze that I wondered what they put in the cocktail. No side effects, and I marveled at how easy chemotherapy was now. I felt wonderful afterwards, and the best part was that the fatigue in my legs was gone. I have energy that I haven’t felt in many months, and it’s been great to experience, especially when I remember how active I used to be with Gene. To have that taken away was hard.

So with my infusion last Tuesday, I expected the pink cloud to last. But it’s gotten a little rougher. The nausea has been really hard, so I keep popping nausea pills which have their own side effects. Heck, no one ever died of nausea. I’ll get through it, but I suspect it might get worse before it gets better. Chemo treatments end on February 3, and then I hope my hair starts to grow back quickly. Oh, I can dream…

All this is a small price to pay for possible remission from my lymphoma for ten more years. The Fred Hutch Cancer Center where I go to see Dr. Christina Poh is one of the best cancer centers in the country, right up there with Sloan-Kettering in New York and Anderson in Texas. And it’s right in my back yard. I’m so grateful to all the doctors and nurses there. They have pulled out all the stops and are exceptionally thorough. And no matter what happens down the road, I know that I’m getting the best care available to me. No doubts, a very secure feeling.

On the home front, my life is so fulfilling. There’s nothing like getting sick to inspire your friends and family to show how much they value you. We humans can be so lazy in that regard. I hope I never get that lazy again, and continue to pay it forward. Next Saturday Gene and I are flying to Anaheim, CA for a week with my kids and grandkids: Disneyland, Santa Monica, and LA! I’ve never been there and am so excited. We’ll go to a restaurant for Thanksgiving dinner, and it will be divine to not have to do all that cooking for once!

Then we fly back and I have two more infusions before Christmas. Gene will step up for me and do all the heavy lifting to prepare the house for Christmas: get the tree and decorate it, make dinner for us all while I hide behind a mask the whole time.

I used to dread the holidays because they were so sad for me as a child. But I’m not a child anymore. Now I see them as yet another opportunity to celebrate my life with my family in the present moment. And oh, what joy we give each other now. If we look for joy, we will find it.

Walking Through Cancer/Part 13

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                                               The Second Assault

Back in 1951, my father was 40 years old, with teeth like chalk. He drank too much and indulged in too many sweets. Predictably, he had so many cavities that his teeth were falling out. In those days, reparative work in dentistry was not what it is today, and he had what were left of his teeth ripped out and started wearing a full set of dentures.

As luck would have it, I inherited his soft teeth, and have had to undergo the same amount of reparative work in my own mouth. And for similar reasons. But dentistry has made remarkable strides in the last generation, and dentures are actually frowned upon now, not unless you are indigent. And, of course, they are the cheapest solution, but dentists want to cash in on all the new ways to save teeth: crowns, bridges, gum grafts, implants. I’ve had them all.

So when I got cancer, I knew that a common side effect to chemotherapy would be mouth sores and infections, along with possible damage to my existing teeth. This has happened to me. I usually wear a brace on the few lower teeth I have in order to protect them while I eat. And lately, I’ve become remiss in wearing it. I woke up this morning and felt one of them looser than before. So I quickly put the brace back in place and vowed to do no more chewing, just eat soft foods for the duration. This will not be hard for me: remember that I’m indulging in spaghetti and mashed potatoes, cake and ice cream lately. I’ve lost too much weight and really need to go in the other direction. Silver lining? You bet, and I’m relishing it!

To make this long story short, I will probably lose that tooth before I end my chemotherapy infusions. Hence—the second assault. More time spent in the dentist’s chair, a lot more money enriching my dentist from the cost of implants and whatever else I may need. It goes with the territory and cancer treatment.

The rest of my skeleton needs to be coddled as well, especially now. I have full-blown osteoporosis already, and I cannot afford to fall down again. But haven’t I said that before? J

If a smashed upper humerus and my arm in a sling for two months, with all the pain that accompanies it—and in the midst of all my cancer treatments—hasn’t taught this student a hard lesson about stairs and lights and slowing down…well, I do hope I continue to remain teachable. I have been duly humbled by this latest accident. And I’m hoping for a complete recovery in my arm, after I undergo much physical therapy.

But there are silver linings everywhere in life, even with cancer. I’ve written about them often in these twenty-two diary entries. The more I feel the darkness approaching me, the more I turn toward the light. It’s blinding sometimes!

Boundaries And Self-Regard

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“If you bring me peace then you get more of my time. Simple.”

I read this online a few months ago and I’m so struck by the message, the tone, the unapologetic boundary setting. How many of us can say this to our loved one, whether it’s our child or our third cousin? This is a hard one for me. It puts my own needs first. And good self-care is something I’ve learned late in my life.

Early on in my daughter’s disease, I allowed her to be a battering ram. She was very abusive to me. Now, I know that it was the drugs talking. (“What we allow will continue.”) But I was stunned, ashamed and feeling overly responsible at the time. I thought I deserved her wish to punish me (martyrdom).

What a relief to finally reach a place where I feel worthy of some peace and joy. This has come after several years of working on myself and changing some self-defeating attitudes. Going into reverse, I’m no longer ashamed, and I know I’m not responsible. May we all reach a place where we can deal effectively and intelligently with this baffling disease. And not be destroyed by it. God Bless!

Walking Through Cancer/Part 12

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“

The First Assault on my Dignity

I’m starting to shed like a kitten. One short hair at a time. I’ve been waiting for this, hoping against hope that I’d be one of the lucky ones who didn’t lose their hair.

“You will lose your hair,” were the first words out of my oncologist’s mouth. Goodness, as though that were the most important thing to worry about! It’s been two and a half weeks since my first chemo session, and my second one is coming up this Tuesday. It doesn’t look promising.

My son and his family are meeting us in southern California for a visit to Disneyland over Thanksgiving weekend. I was so hoping to look pretty for them. And even though I know that beauty is only skin deep, it will still shock my grandkids to see their Bela bald. I haven’t washed my hair in ages, and it looks like dishwater, with no color left. I was going to see my hairdresser for a much-needed trim and maybe put a few of my zebra stripes back. But I may visit her anyway—to shave my head. Bless her heart, she said she’d shave it free of charge.

I think of Kate Middleton and that gorgeous mane of brown hair she had. I wondered out loud how she’d managed to keep it during all those months of chemotherapy. My hairdresser responded,

“They can do miracles with wigs these days. With her money and position, it would be easy to duplicate her hairstyle and no one would see the difference. But maybe her chemotherapy cocktail was less harsh and she has kept her own hair.”

The truth is, my hair is nothing to brag about. With each pregnancy, it continued to thin and is extremely short now anyway. Gone is the seventeen-year-old high school senior with long hair flowing down her back. So losing what’s left of my hair is no big loss. But another joke God has played on me is giving me the use of only one hand. I had found an array of colorful scarves to cover my head. But I can’t arrange any of them with only one hand. I have a few hats and they will be easier to slip on one-handed. So when and if the time comes, I’ll see what works best for me.

More changes. Slight nausea, for which I have pills. Less appetite, weight loss, but I’m enjoying a delicious food honeymoon! Preparing all the foods I always used to avoid because they put weight on my small frame: fried cheese sandwiches, spaghetti, “have a little ham with your mayonnaise,” and rich chocolate desserts. I can’t get too used to all this, though. It’s a temporary silver lining. But I’ll take it.

So, we’ll see how my next infusion goes next Tuesday. I’m hopeful it keeps working as well, and that the poison is killing all the t-cell bandits in my blood!

More hair loss? Meh…