empowerment

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!

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!

The Healing Power Of Humor

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From Hope for Today, April 6:

“…Today my sense of humor is a natural reflection of who I am. I experience the world through smiles and laughter rather than through bitter smirks. I share joy with others rather than seek company for my misery. I help others heal rather than attack them. I allow my sense of humor to unfold naturally, just the way it was meant, and I watch the wonderful results as my Higher Power works through me toward a higher good.”

Finding my sense of humor has been a reflection of how I’ve changed in recovery. I’ve worked through my grief around my daughter and continue to do so every day. But the darkness has receded. Somehow it’s not as heavy to carry as it used to be. It seems lighter. I’ve gained perspective from years of reading and writing, and listening to other peoples’ stories. Being able to laugh, and cease to take myself too seriously, has eased my journey through this frightening tunnel. I can see the light at the end of it.

At times I wondered if I would ever laugh again, but my Higher Power wanted me not only to survive but to do so joyfully. There are many other people in my world, and my recovery spills over onto them in countless ways.

Cultivating a healthy sense of humor keeps me right-sized; I stay small and HP stays big. Then I don’t get in my own way so much!

Walking Through Cancer/Part 10

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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 9

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A Retrospective Musing

Cancer has taken away the life I lived before. Like a thief in the night, one day I was an energetic 70-something, fully engaged in the life around me, and then I wasn’t. But even before this disease struck, I worked at being spiritually healthy. And now, more than ever, it’s necessary for me to stay grounded in those principles. I am becoming an expert at turning lemons into lemonade. So, applying that metaphor to my cancer journey, I’d like to share a real-life example of how beneficial it is to maintain a positive perspective.

Here is a recipe for lemonade. But first you’ll need lemons. You can’t make this delicious fruit drink without the sour bitterness from the lemon tree. How you get from one to the other is not so complicated. Not if you want to live well.

Gene and I took a camping trip to Orcas Island recently. Probably just to prove to ourselves that we still could. Over the past thirty years, we have camped in some of the most horrible conditions imaginable: from near hurricane-force winds in the middle of the night that blew our tent off over our heads; to swarming black flies that sucked the living daylights out of me. But we were much younger then…

The first lemon on this trip was that I booked the 5:55 am ferry out of Anacortes. I must have been asleep when I did that. Wild horses couldn’t have gotten us to a ferry at that hour. So we showed up at 12:35 when I thought we’d be leaving.

“Sorry, but can’t you see the 5:55 am time on this receipt? Go wait in the standby line.”

“Thanks, pal.”

Lemonade? We made it onto the ferry.

The next lemon on our Orcas trip was our campsite. I knew better than to wait to the last minute to make a reservation. So in December of 2023 I secured a spot in Moran State Park. The last one available! I felt so lucky. But sometimes I think with cotton in my brain. Why was it the last one available? Because no one else wanted it, dummy Site #83 was sandwiched in between many other sites and the restroom, so there was naturally a steady stream of people on their way to the bathroom right through our site.

Lemonade from this lemon? We didn’t have to walk far to pee; and there was trash and a water spout right next to us.

Our tent that Gene hastily stuffed into its sack had broken poles, so we couldn’t put it together.  Gene jerry-rigged our back-up tent by raising it with a couple of walking sticks.

Lemonade? Gene gallantly offered,

“I think I’d rather sleep out in the open air anyway, under the stars. Haven’t done this since Ely in 1999.”

God Bless Him!

And so I come to the end of my recipe for lemonade. To reach a happy conclusion when life throws lemons at us requires some semblance of positive rationale-building. For every one of those lemons I could have thrown myself into fits of hand-wringing and anxiety. But to what end? An attitude and camping experience far more bitter than most lemons taste. So…my choice these days is to put a positive spin on whatever is happening. A worthy challenge.

Turning lemons into delicious, sweet lemonade beats walking around with my lips pursed from sucking on sour lemons. And we did prove to ourselves that we could still go camping, as ill and infirm as we are now. Gene is still nursing a broken foot. And I’m bone-tired from lymphoma. But we did it and survived, proud that we still could.

Cancer is one great big lemon. Not fun. But I’ve been tested before in my life and I’ve survived.

We only get one spin around the race track. Might as well try to make it a happy one. Beats bitchin’!

Walking Through Cancer/Part 8

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                                           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!

Progress Not Perfection

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Perfectionism just keeps us stuck in being dissatisfied with ourselves. It isn’t possible for us to be perfect all the time. Trying to be perfect is a terrible weight around our necks. If nothing else, it’s a huge distraction from doing the recovery work we are called to do. Let it go. We are enough just the way we are. When we can make peace with that—and I admit that it takes a long time— we’re well on our way to an unexpected freedom!

Change Is Good

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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.