It’s been a long, hot summer with family around most of the time. But no cancer treatment, a good thing so I could fully enjoy them.
Big girl pants, the time has come. It’s September 11.
I’m scheduled to have my port implanted in two days, at 8:00 in the morning. So, another hotel stay to avoid having to wake at 5:00 am so that we’ll be on time. We’ve had to do this several times on this journey and we’ve turned them into mini-vacays and dinners out together. There will surely be more. Lemons to lemonade, a lifelong skill!
I have been nervous about the port placement. But once again the nurses there added some conscious sedation to my IV so that it would be bearable. And it was, just pretty sore afterwards when the lidocaine wore off. I’ll get to see if my new mattrass will keep me on my back.
It feels weird having a foreign object in my shoulder, and I don’t particularly like it. But it’s really the most efficient way to receive my transfusions. A few people who have used their veins have seen them turn black from the poisonous liquid. Chemotherapy saves many, many lives, but it also has a well-known dark side.
After a long, dry period, things are moving quickly because the clinical trial is about to reopen. And they are nothing if not thorough at Fred Hutch. My port is in pace now. Next week I’ll have another PET scan. Then I’ll have my third bone marrow aspiration right after that. And the last procedure that I know of is a heart exam called a MUGA scan, which is a trip through a machine with some liquids in my vein to check the status of my heart. This last test is to see if my heart is strong enough to tolerate the chemotherapy.
After months of delay and frustration, it looks like I’m about to start climbing that mountain. I’m feeling energized and optimistic. To fight the feeling that my life is out of control, I try to stay as well-organized as possible. I bought a “chemo cap” from Amazon which, when kept very cold, you put on just before the infusions begin. The rationale is that the cold will insulate my hair cells from the harmful chemotherapy, preventing my hair from falling out or at least helping it grow back quickly. I’m not optimistic about its efficacy, but I’m willing to try anything to feel “normal” during the process. And I have a pile of scarves and bandanas o cover my head if necessary.
My friends have donated them all to me. Because of all the support I’ve been given from so many, this has not been a lonely journey. Even if I can’t fully prepare for what comes next, I know that I am in the loving arms of friends, family, and God, most of all. I know that, from beginning to end, I will never be alone.
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.
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?
This is a recipe for lemonade. But first you’ll need a few 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 could still do it. 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 absentmindedly 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 where we camped. Now, 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 on the island. The last one available! I felt so lucky. But I should have known better. Sometimes I think with cotton in my brain. Why was it the very last one available? Because no one else wanted it, dummy. I knew it wasn’t close to the water, yet I didn’t realize how far away it would be to schlep our canoe and kayak into the lake. But site #83 must have easily been the worst site in the whole park. Sandwiched in between many other sites and the restroom, there was naturally a steady stream of people and screaming babies on their way to the bathroom right through our site. So, no privacy. No view. No water.
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.
Speaking of our boats, of all the beautiful places in Washington State to camp, we chose this state park because of all the lakes. I had recently bought a kayak and wanted to try it out in calm waters. Well, life happens, doesn’t it? My bilateral carpal tunnel syndrome acted up so violently last May that I had to have both hands surgically repaired. One in June and the second one in July, a week before our trip. Needless to say, I had no working hands to paddle either Gene’s canoe or my kayak. Terrible timing.
Lemonade? If we had taken the boats, it would have been much more physical labor that we were definitely not up to right then. And I chose to let my hands heal over proving myself in my kayak. A healthy choice.
Back to the campsite. Our tent that Gene hastily stuffed into its sack had several broken poles, so we couldn’t put it together. The backup tent was another conundrum for us. But Gene jerry-rigged its raising with a couple of walking sticks. It’s the same tent we used in Yosemite in 2006. And small. We didn’t mind practically sleeping on top of one another back then. But we do now.
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!
Honestly, how long has it been since we last car camped? Maybe six years? We were so out of practice that we forgot how to pack the food in the cooler. Safely. I dutifully made lots of sandwiches beforehand so we’d had plenty of ready food to eat. Wrapped each one in plastic to protect them. Oh no! At every gas station we went to, Gene got a bag of ice and all those ice cubes cascaded down into the bottom of the cooler where I had packed our sandwiches. A day into the trip I went to get some of those sandwiches for lunch. A wet and soggy mess. I ate my peanut butter one anyway because I hate to waste food. Or maybe to self-punish. But Gene couldn’t stomach ham and cheese on soaking wet bread.
Lemonade? I relearned how to pack an ice chest. And we had plenty of good backup food to eat. Plus, Eastsound was close with great restaurants. We ate well the whole time.
I frequently get night sweats with my cancer. Annoying in my bed at home, they were a real pain in my sleeping bag. I awoke in the night to a soaking bag up around my head and neck. But, as always, I went back to sleep. Then during the night it had dried out but left a hard, crusty film on the lining of my bag. I asked Gene about it, and he said,
“It’s probably dried sodium that left your body.”
Lemonade: so that’s why I have low sodium counts in my bloodwork even though I eat enough salt every day to fill a salt shaker! Mystery solved.
For comfort, we brought two camp chairs. Gene’s broke as soon as he sat in it. My fault for leaving it outside all winter. I threw it in the trash.
Lemonade? I sat in the remaining one. Gene sat in the car, happily dozing much of the time.
Lemon: I have a case of my second memoir, Stepping Stones, that I’ve run out of places to unload. Women’s prisons are next on my list. Lemonade: I brought a few to Darvill’s in Eastsound to donate. He accepted them and will consider stocking my title. Just pass ‘em around. There’s good spiritual healing to be found in the pages.
And so I come to the end of my recipe(s) for lemonade. And it’s fitting that I end on a spiritual note. Because 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 whined and thrown myself into fits of hand-wringing and anxiety. I’m quite capable of doing that. But to what end? An attitude and camping experience far more bitter than most lemons taste. So…my choice these days—Gene has always had an even temperament, except when he doesn’t—is to put a positive spin on whatever was happening. A worthy challenge.
Why? Because 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.
We only get one spin around the race track. Might as well try to make it a happy one. Beats bitchin’!
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.”
“My daughter had been hijacked by a devastating disease, and it was stealing my daughter away from herself. We couldn’t help but be swept up in the tumultuous sea of change in my beautiful daughter. She was morphing into a drug-addled stranger.
A new anxiety was building up in me and I developed insomnia. My doctor prescribed a mild sedative, Ambien, to help me get to sleep at night, but it wasn’t always effective as I tossed and turned in bed. If Gene was with me, he didn’t get enough rest either. We were both red-eyed and fatigued on many mornings, but we went to work anyway. My work ethic rubbed off on my partner.
Somehow Annie managed to graduate from George Mason University in 2004 in spite of the methamphetamine and cocaine abuse. She crashed on the sofa in my basement, on and off, oblivious to my attempts to help and support her. She was perilously hooked on those two drugs.
“Annie, what is this white stuff in a bowl on the dryer?” I asked, suspecting the worst, and furious.
“Oh, fuck off, Mom. And don’t you ever dare to touch my stuff again!” she responded with fire in her eyes. That’s right, offense is the best defense.
Was I just a nuisance to her, or was I now the villain in her eyes? I told her to sleep elsewhere and then started going to recovery meetings for families of substance users. But it was difficult for me to grasp most of the concepts in the program. I was, at that point in my life, incapable of admitting that I was powerless over Annie’s disease. Facing that reality was counterintuitive for me. It seemed like I’d be abandoning any attempts to save my own child. After all, had I not been a poor model for her with my own deceptions regarding substance use disorder? With so much self-blame, how could I decide I was powerless now to help her?
There was much for me to learn about substance use disorder: how to properly treat it; how to survive it.
And in trying to survive one of a parent’s worst nightmares, my gratitude to Gene for dedicating every day to helping me get through it…what can I say?
“Normally my sponsor would recommend a gratitude list when I felt low, but one day, when I complained about a family situation, he suggested that I list all the things I was unhappy about. Several days later my depression had passed, and when I told my sponsor about the terrific day I was having, he suggested a gratitude list. He thought it might help me to refer to it the next time I felt blue. That made sense to me, so I complied.
When I went to put this new list in the drawer where I keep my papers, I noticed the earlier list and read it once more. To my surprise, my list of grievances was almost identical to my gratitude list—the same people, same house, same life. Nothing about my circumstances had changed except the way I felt about them. For the first time I truly understood how much my attitude dictates the way I experience the world.
Today’s Reminder:
Today I recognize how powerful my mind can be. I can’t always feel good, and I have no interest in whitewashing my difficulties by pasting a smile on my face. But I recognize that I am constantly making choices about how how I perceive my world. With the help of Al-Anon and my friends in the fellowship, I can make these choices more consciously and more actively than ever before.”
‘Change your thoughts and you change your world.’ Norman Vincent Peale
I can make an effort to be grateful instead of sad. It’s a conscious choice—because I want to be happy.
“I’m so grateful I found a way out of sadness, a way to take care of myself each day, and a relationship with the God of my understanding, who will never abandon me. The pain I’ve felt in the past is equal to the measure of joy I feel now.”
That’s quite a mouthful. Whoever wrote those words in “The Forum” is saying that somewhere between despair and happiness she or he did some work, found some answers. For me, anyway, I entered into a state of grace. I quite deliberately let go of my pain, which served no further purpose in my life. The lessons it taught me have been learned. I’ve put my sadness in a back drawer—and replaced it with positive thoughts that keep me motivated to reclaim my life, my remaining loved ones, and keep my heart ticking.
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.
from Sharing Experience, Strength and Hope, June 16:
“I remember feeling my anger and resentment lessen at my first meeting when I learned that addiction is a disease, like cancer or diabetes. I didn’t cause it, I can’t control it and I can’t cure it.
Today I am grateful that I am married to an addict because I have been given the opportunity to explore my spiritual nature and move out of my comfort zones. I have taken a good look at who I am, what I want and where I’m going. I am facing my past, my faults and my fears. I am becoming a better person, a happier person, and a more serene person. I am slowly but surely learning not to suppress my emotions and fears, but to release them and grow.”
‘No longer forward nor behind I look in hope or fear. But, grateful, take the good I find, the best of now and here.’ John Greenleaf Whittier
Just for today, I will pay attention to my blessings. I have so much to be grateful for, and I guard against complacency. It can all be snatched away in a heartbeat, so I take nothing for granted. This is a good way to live, savoring every good moment.
