Expectations

Walking Through Cancer/Part 18

Marilea C. RabasaLeave a comment

                                          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…

Spiritual Levitation

Marilea C. RabasaLeave a comment

“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

Marilea C. RabasaLeave a comment

                              

                                         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 14

Marilea C. RabasaLeave a comment

                           

                             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

Marilea C. RabasaLeave a comment

                                               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!

Walking Through Cancer/Part 12

Marilea C. RabasaLeave a comment

“

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…

Walking Through Cancer/Part 11

Marilea C. RabasaLeave a comment

                                    My Blood Tells the Whole Story

I’m so glad that I had a chemo port surgically implanted in my right shoulder. It’s much simpler for everything: blood draws, transfusions, and chemo infusions. Most of the time I forget it’s even there: painless, just a little bump under my skin. Very convenient.

This week, my blood work showed great improvement in my numbers: white blood count is normal for the first time in a year; but still low red count and anemia. Yet I feel so much better after only one chemo infusion last week. No more fatigue in my legs and just a generally improved sense of wellness. Except for the pain in my left arm…

I asked my doctor on Monday to level with me: did they start with a low dose of chemo and will gradually increase it with five more infusions? She said no, they plan on giving me the same dosage every time. So I guess we’ll see. It’s out of my hands anyway. Just lean into it and be grateful that there are no side effects so far. Same story with the clinical trial, a randomized blind study. Maybe I’m getting a placebo. Time will tell.

Fred Hutch Cancer Alliance has offered me up to $2100 for participating in this clinical trial. I’m pleased about that. And if the trips down to the Hutch are more than twice a week, they offer cheap housing on their campus to the cancer patients. I’m getting a lot of support. Not to mention all the rides my friends are offering to get me to the Hutch for treatments. I am surrounded by love and support. No more room in the refrigerator for all the food people are bringing. It’s hard to cook with my arm in a sling!

I feel blessed as I walk through this journey. I’ve attempted to be proactive with all the needs that go along with chemotherapy: anti-nausea pills, which I haven’t needed at all. And since my doctor assured me that I would lose my hair, I have a box full of scarves and bandanas which I can’t put on with one hand! I think God is playing a joke on me by making this so difficult. But so far, no need for head covering: I still have my hair. Still, it’s early in treatment…

During my first infusion, I realized I forgot to put on my chemo cap (a desperate attempt to keep my hair). By then, though, it wasn’t even cold, so I said to myself, the hell with it. I don’t even care anymore. Women are vain creatures, yes we are, and I certainly am. But every day that passes, my vanity seems to be flying out the window. It’s all so superficial anyway. My spiritual health is what matters.

So this is where I am now, growing inwardly, and happy to see on MSNBC that bald ladies seem to be in fashion. A new trend!

Walking Through Cancer/Part 8

Marilea C. RabasaLeave a comment

                                           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

Marilea C. RabasaLeave a comment

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

Marilea C. RabasaLeave a comment

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.