Walking Through Cancer/Part 14

                           

                             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.

Boundaries And Self-Regard

“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 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!

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.

Gone But Never Forgotten

My unsent letter to my child:

Dear Annie,

Ironic, isn’t it, that you have become my teacher and not the other way around—teacher of life, teacher of love, and beacon of surrender.

I’m so grateful that you were born, even though at times I’ve felt otherwise. God works in mysterious ways, doesn’t he? Though you haven’t been in my life long, and not always happily, it’s been your very existence that has propelled me into a serenely spiritual life, even happiness. I never would have done the work necessary to reach this place without your inspiration.

You are my child, my teacher. As I’ve stumbled on this rocky path, my thoughts of you have guided me; they guide me still.

All that I’ve become are gifts from you, my daughter: life lessons, trial by fire. How do I honor you?

By living well—By loving well.

Mom

From Shadow To Light

A movie came out a few years ago, “Drive,” and what I remember about it is the background song by Riz Ortolani. I love the words and the meaning behind them.

“Oh my love

Look and see

The Sun rising from the river

Nature’s miracle once more

Will light the world.

But this light

Is not for those men

Still lost in

An old black shadow.

Won’t you help me to believe

That they will see

A day

A brighter day

When all the shadows

Will fade away?

That day I’ll cry

That I believe

That I believe.

Oh my love

High above us

The Sun now

Embraces Nature

And from Nature we should learn

That all can start again

As the stars must fade away

To give a bright new day.

Waking Through Cancer?/Part 9

                                                    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.

Taking Ownership Of My Own Recovery

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.