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.

“Let Go And Let God”

Let Go and Let God (p. 28, 95, 107, 125131,n163, 220, 294, 361) “Every day there are decisions to be made and problems to be solved. When we notice irritations growing into tensions, tensions into near-panic, and old fears returning, it is time to stop and turn to God. We find that when we supply the willingness, He supplies to power.”

Remember, “our best thinking got us into the rooms.” In other words, our minds can be dangerous places to go without some help. In Al-Anon we turn to a Higher Power. It can be God, a tree, or the group itself. As long as it’s not just us. Our egos and willfulness can blind us so much to taking a healthy course of action. And we’re just trying to help our children, so it’s easy to rationalize and justify our actions. That’s where educating myself about the disease gripping my daughter has been so critical for me. Over time I finally accepted that I didn’t have the power to save her from her disease. That was a hard pill to swallow, but a necessary one. I learned to let go and concentrate on what I could control. That’s when I started to feel free and serene and able to move forward with my life. I wish the same for all my brothers and sisters in these rooms. God Bless!

Relax!

What is your favorite slogan? Page quotes are from One Day At A Time:

Easy Does It (p. 19, 111, 189, 238, 301) “When we come into Al-Anon, burdened with problems and confusion, we are confronted with a bright light of hope. This may tempt us to try too hard to learn, too quickly, all there is to learn about the program.”

So, take in what you can when you can, at your own pace. Many people leave before the miracle happens because they felt overwhelmed. I’m so very glad I didn’t and stuck around.

Looking For Solid Ground

Looking for Solid Ground

From Hope for Today, November 12:

“Serenity? What’s that? For years I was like a weather vane that spun around according to the air currents that other people generated…I attributed these mood swings to nervousness, lack of assurance, and whoever else occupied the room at the time. Serenity always seemed beyond my control…where does this serenity come from? It comes from trusting that everything in my life is exactly as it should be…it comes when I choose to care for myself rather than to fix someone else…

Thought for the day: I am powerless over many things, but my serenity is not one of them.”

Trust—a kind of steadiness— leads to surrender which leads to freedom.

Serenity.

Some Gifts Of My Recovery

Humor  Being able to laugh out loud—at myself most of all—keeping things in perspective—is so critical, and you can’t do that by living in a bubble. I was stuck in a hole of depression, but recovery has offered me a way out.

I had to force myself out of isolation and start talking more to people. I always came away learning something and even feeling less depressed because I wasn’t alone. I learned not to take myself and my problems so seriously and smile more. The program helps me to stay focused on the solution and not the problem. The solution offers me relief because I don’t have to fix everything. What a revelation!

Learning to let go of control and determining what, in fact, is uncontrollable was a milestone for me. Remaining open to joy and beauty, and always feeling gratitude in my heart for my blessings.

The Bad Stuff When tragedy strikes us we are tested in new ways. I was bankrupt spiritually and was not equipped to deal with life’s challenges. Fortunately I picked up some important survival skills later in my life:

                  Gratitude: There is always something for us to be grateful for, if only the weather. Where depression and dysfunction used to be in my headspace, it’s been replaced with a new default mode. I like to keep things simple. Instead of bemoaning what I have lost, I focus on all that is left. Suffering and martyrdom had diminished my ability to live well, and I have abolished them from my life.

                  Acceptance and faith: If I can’t change it, whatever it is, I will accept it with as much grace as I can muster. And follow this with confidence in God’s plan,

                  Humor: Oh, laugh about it, Marilea. You and your problems are not that important!

                  From Each Day A New Beginning, July 3: “Finding humor in a situation, any situation, prevents us from succumbing to feelings of powerlessness. Feeling powerless, behaving as victims, came easily for many of us before we chose this program and the Twelve Steps to live by. Choosing a humorous response, opting to laugh at our situation, at any point in time, keeps our personal power where it belongs—with ourselves.”