Essays and Poems

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 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.

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!

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…

Walking Through Cancer/Part 11

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                                    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 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!

Walking Through Cancer/Part 7

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                                                     Big Girl Pants

Early in my diary entries, after my first bone marrow biopsy, I thanked the doctors who approved administering conscious sedation to me during the procedure. I referred to the men and women who didn’t receive it,, most ungenerously, as “screaming meemies,” because presumably they couldn’t tolerate the procedure awake. Now that the clinical trial has reopened, things are moving quickly, and there wasn’t time to schedule conscious sedation this time. But Ativan was approved. So after my blood draw, I went into the procedure suite and waited for the oral sedation to take effect. It didn’t, not at all. Too nervous, I guess.

So, without blinking an eye, I turned over onto my side and let the nurse/practitioner begin her work. It helped me to have a nurse I knew come in and hold my hands, which were getting sweatier by the minute.

“I’m going to give you a few shots of lidocaine, Marilea, so you’ll feel a little pin prick.”

No big deal.

“Now I’m going to go deeper into the tissue with more lidocaine.”

Ouch, that really hurt, a deep ache.

She was coaching me like I was giving birth,

“Deep breaths, Marilea. A deep one into your nose and then exhale out of your mouth.”

“Okay, I’m going to get some liquid aspirate now. Deep breaths.”

“Another deep breath, Marilea. Okay, halfway there. One more puncture.”

I felt a very deep ache in my hip. Moaned a little, kept up the breathing. This part took a while. She was carving a small piece of bone out of my hip and placing it in a wider, hollow needle.

Then it was over. Maybe twenty minutes.

I finished dressing and Gene steadied me as we were leaving. NOW the Ativan kicked in! I slept when I got home, disturbing my sleep cycle. Definitely not worth the trouble. Even if it had put me to sleep in time, the pain would have woken me up. I’ll never elect oral sedation again, and I may forgo conscious sedation as well the next time. It’s a nuisance with scheduling and getting me ready (starvation beforehand, for one). Since I have blood cancer, I know I’ll be getting regular bone marrow biopsies, so I may as well make friends with them.

This journey has taught me many things. And one of them, as I get deeper into the weeds of treatment and all the discomforts, is that I’m tougher than I thought I was. Remember, up until now there has been no need for me to undergo these tests and procedures. But I’m at a new normal now, and more grit will be required of me. For those of you who have been following me on this journey, you know that I’ve been challenged emotionally most of my life. It usually took the form of substance use disorder, but thankfully I’m in recovery from years of that behavior. And right now, when I most need it, my recovery is serving me exceedingly well.