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!
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.
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!
“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!
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!
“They sicken of the calm, who knew the storm.” ~Dorothy Parker
Do I see myself here? Somewhat, if I’m honest, as cynical as that quote is. Maybe in the beginning I was addicted to the drama of my daughter’s substance abuse disorder. That—and all the martyrdom I subjected myself to. But this did not bring me happiness. There are a number of ways, I have learned, to stay involved with an addicted child—ways that might have helped us both navigate this illness better. But for a long time I was stuck and didn’t know how to free myself of the downward spiral.
Over time, my obsession broke me down and wore me out. I do enjoy the peace in my life now, though I still experience some PTSD. So many years, it seems, of struggling to help her, and then for both our sakes, letting go of the struggle to save her. Addressing once and for all my own substance use—so that my presence could benefit my other loved ones. Don’t think for a moment that I don’t feel the pain of losing my girl. I do. The trauma of losing a child, to whatever illness, never goes away. But, in my experience, it isn’t so heavy to carry. It feels lighter now. Hang in there, Moms. Many things are resolved with better education and the passage of time. Keep loving yourselves and the world around you. Love is the great healer of all things!
“Loving, like prayer, is a power as well as a process. It’s curative. It is creative.” ~Zona Gale
“…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!
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!
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!
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’!
