Recovery in the Program, time and the perspective it brings us, has given me a lot of new information. My own recovery has also graced me with a healthy amount of humility. I used to confuse humility with humiliation. I used to think that admitting my faults would produce shame in me and threaten my self-worth. But in recent years I have a different understanding of this word.
Having taken the Fourth Step (“Made a searching and fearless moral inventory of ourselves”), and later the Seventh Step (“Humbly asked Him to remove our shortcomings”), I began to see myself in a healthier light. I began to see myself in relation to my higher power. I am just a speck in the universe, no more, no less. This need to stay right-sized keeps me out of trouble. I’ve been playing God for much of my life. It doesn’t matter anymore why; what matters now is that I remain ever mindful of the amount of power I have over others and stop trying to play God with them. They have their own Higher Power, and I’m not It!
The limbo I’ve been in for half a year has been a challenging test for me. A test of dealing with the gray areas in life—the ambiguities— where we want answers to a problem but don’t get them, and we find ourselves at the mercy of our coping abilities.
There was a time when I would fold in like an accordion at the first sign of frustration or depression. If I was unhappy about anything, I tended to run away. Just retreated into various forms of self-punishment that provided numbness for a time. But that was another woman.
I’m glad I’ve evolved into someone stronger. Personal heartache has followed me much of my life, but no better or worse than anyone else’s. Yet I lacked the tools to deal with it effectively. Mired in victimhood and self-flagellation, my self-absorption buried me and isolated me from being the best person I could be. Able now to see my life through a different lens, recognizing what a privileged and fascinating life I’ve led, has opened my eyes and filled me with a sense of long-overdue gratitude.
Dr. Christina Poh met with us on Zoom a week after my second bone marrow biopsy. Gene and I sat side by side on the sofa, holding hands. No matter what she told us, we knew that we had each other. That, in itself, has been a tremendous blessing. I am so fortunate to see the silver linings manifesting themselves everywhere. There’s nothing like what I’ve been going through to sear into my heart what matters most in life. And now I have time to live that learned wisdom.
Her first words to me were, “Well, Marilea, it’s a fluid situation.”
“What does that mean, Dr. Poh?”
“It means that we don’t see cancer in any of your tests right now. Not in the two bone marrow biopsies, and not in the lymph node biopsy, reviewed by NIH, where they found nothing. We’d like to do another PET scan to see if there’s any change from the one you had in November. Maybe those results will give us some new information that will explain your symptoms and give us something more to work with. But for now—today—you are cancer-free and we can be glad of that.”
“God, what a relief!”
“Well, we’re not going to say you have cancer when we don’t see it. Chemotherapy is poison, and we can’t justify infusing you with it at this point.”
A fluid situation…meaning, yes, it could change. The earlier diagnosis of L-HES, for example, can progress to leukemia or lymphoma without proper treatment. So, am I home free? Maybe and maybe not. But I FEEL wonderful, no lack of appetite or weight loss. If ever there was a time to live in the moment, it’s right now.
The aborigines in Australia operate on two time zones: now and not now. I’ll take “now” for my happy reality and let “not now” reveal itself another day.
“All my children had finished college and had spread their wings. Caroline lived in San Francisco, and Carter was about to leave for Austin to get his master’s. But Annie was still living in the area, utterly transformed by the disease of substance use disorder. I bore witness, close-up, to unbelievable changes in her character, shocking new behaviors, as I experienced a mother’s bewildering sadness and grief. I felt sometimes, like going to bed and staying there.
Exploding into my living room a year later with a pit bull and an overflowing suitcase, her eyes were blood red as she pleaded with me.
‘Mom, help me. I can’t do this anymore!’
Of course I’ll help you, my darling girl. We’ll arrange for another rehab, and I know it will work this time.
‘Annalise,’ I told her without giving her a choice, ‘I’m taking you to Arlington Hospital. They can help you there. Where is your car? How did you get here?’
‘My car was stolen. I got a ride here,’ she said, looking toward the door, wild-eyed. ‘Please get me out of here. I need help.’
‘Honey, it’ll be okay,’ I offered. ‘I’m sure they’ll give you something to calm you in the hospital.’
Thank God Gene was living with me then and happened to be home.
‘Gene,” I was trembling, ‘you need to take Dante to the animal shelter in Alexandria. I’m sure they’ll find a home for him.’ I wasn’t sure of that at all, but it helped Annie say goodbye to her dog.
I got in the car with her and drove the short distance away, illegally parking right at the entrance. The staff checked her in to the psych ward. As I turned to leave, Annie suddenly approached me, panicked. Of course she was afraid. She was putting herself in a situation where she would have to stop abusing drugs as long as she was there.
‘Annie,’ warmly offering her a hug, ‘Gene and I will visit you every day. And Dad and Paula will come over from Georgetown, too. Just try to get better. We all love and miss you so much.’
She turned away from me and followed the nurse. The door to the psych ward slammed behind her. It only opened in one direction. She was locked in.
And I was locked out. I still couldn’t accept the fact that Annie was a runaway train—and I couldn’t stop the wreckage. It was October, 2007, my favorite time of year. But I was blind to the autumn beauty all around me. The world appeared bleak and colorless.
After I got home, I repeated Psalm 23 over and over again: ‘The Lord is my shepherd, I shall not want…Yea, though I walk through the valley of the shadow of death, I will fear no evil…’
I was praying as hard as I could. But not hard enough.
Total Wine wasn’t far from my condo. I popped in there for an economy-size bottle of Chardonnay, not even waiting for the change. The twist-off cap let me start right there in the parking lot. Once again I felt rattled and sick with worry. Alcohol was how I was finding my courage more and more in those days. The courage to watch my daughter fall into the rabbit hole of substance use disorder and be helpless to stop her.
Mirror, mirror…I was following her down that hole.
By the time Gene returned from taking Annie’s dog to the shelter, I’d finished about half of the bottle, was terribly drunk, dizzy, and sprawled on the sofa, wailing out loud.
‘I’ll never do this again, make me promise! This is the last time!’
I’ll never forget a friend I had years ago. She was the youngest of three girls in her family. The middle sister had suffered from cancer years before and had died. My friend was ten when her sister died at age fourteen. But it wasn’t the death that traumatized Jillian so much. It was the years of care, heartbreak and obsession with saving her dying child that her mother endured—to the exclusion of her other two girls—that turned Jillian into an angry, rebellious teenager. She did not get her share of mother love, she felt, and to this day she has not forgiven her mother. I should have remembered that story while I was obsessing over my daughter.
I have since made amends to my other children and family members for allowing my daughter’s illness to take up so much emotional energy in my life. And they have forgiven me. It’s so easy for a loving mother to become enmeshed in the life of a troubled child. But I need to remember that there are other people in my life, and I will try to keep a healthy perspective and a sense of balance. For them. Because they matter too.
Since my first bone marrow biopsy back in October, I’ve become more pensive than usual. Just taking it all in. I’ve never been seriously ill and now, seemingly out of the blue, I have a blood disorder. There’s no precedent in my family. This past year I’ve had to say goodbye to several friends, all of whom died from cancer. I felt sad to say goodbye to them, but it never occurred to me that I would be joining them one day.
So yes, regardless of what I may have, I have been thinking about death and what it would mean to me. Elisabeth Kübler-Ross describes in detail the various stages of coming to terms with death. There’s denial, anger, bargaining, depression and, finally, acceptance. The amazing thing is that I’m in acceptance now.
“Gene, I’m not afraid to die. I’ve lived such a rich and full life. How many people can say that?”
“Not many. Good for you, Babe. It’s the faith we’ve learned in our recovery rooms that will sustain us through this. Things are happening according to God’s plan. When we accept that without resistance, getting through it is so much easier.”
The fact is, we are all going to die sometime. And we don’t usually get to choose how. But if that’s what’s waiting for me, I feel so lucky to stare it in the face and prepare. Which I have gratefully done. My estate needed to be updated for one thing. I want the most important people in my life to be well taken care of.
At this point, I’m more concerned about my loved ones than I am about me. Whatever is creating havoc in my body will continue to do so for now. But grief is for the living. My family, close friends and I are on a jet which is in danger of crashing. I want to do what I can to ensure a smooth a landing for them.
This place where I am—this space between living and dying—can be thought of as an enormous blessing. I can use the time for maximum benefit. And what a luxury, I feel so lucky. The prospect of dying has given me new and larger perspectives on the art of living, the art of dying, and the art of forgiveness. It’s such a relief not to be mired in pettiness and all the emotions that make us smaller than we want to be.
To convert our energy instead into loving can make us so much bigger than we were before.
For now, though, there’s still the waiting. And when the diagnosis comes, I’ll accept it. I’ll do what I can to get healthier. And then relax and let God do His work through me. Maybe I’ll get to live a lot longer. And maybe not. But whatever His plan is, I hope I will die as gracefully as I’ve tried to live, with deep gratitude in my heart for all I’ve been given.
I check in. Very dim lighting. Not harsh, comforting. I look around at all the cancer patients, some with hair, some without. Some walking around with a mobile IV. I recognized that I was in a special world of sick people, just sick people and their companions, and I wondered whether or not I belonged there. Or if this mecca for compassionate care would become my second home.
I had to bring a stool so they could check for parasites. Possibly I’d been harboring some exotic larva since my honeymoon in the Amazon jungle in 1975.
First stop was the lab. Needle city, and roaring with activity. Needles frighten me, especially when they are left in my arm. This is always the worst part for me: the nurses digging around for just the right vein.
“This one is a sure bet,” I tell the phlebotomist confidently, as though I were in charge.
“No,” she noted dismissively, “it looks like it might roll on me.”
“Okay, wherever is best,” I concede, not getting my way.
So the phlebotomist stuck me where she wanted to while I winced, and then retracted the needle but left the catheter in my arm. I hate the feeling of having a foreign object in my body, but I was aware that it was the means to knock me out during the procedure.
Which made all this bearable.
She took, I counted ‘em, nineteen (19) vials of my blood. Leave no stone unturned is their motto.
One really strange way that I know I have a blood disorder is when I observe my arms. My veins stick out like a weight lifter’s. That’s so unlike me, dainty little me. But it was easy, anyway, to find a vein.
Then on to my room for prep for my bone marrow biopsy. I entered the procedure room, where I met the kindest nurse alive.
“We want you to be comfortable, Marilea. So let us know if you need more sedation after we begin.”
Erin, the physician’s assistant who did the procedure, gave me a lidocaine shot in my hip. I felt that, but how many shots have I had in my life? It was nothing.
My nurse said,
“Okay, giving you the first vial of fentanyl. How are you feeling?”
“I’m still awake!”
“Okay, here’s a second vial.”
I didn’t thank her because I was out. But afterwards she told me that I was grimacing and showing signs of discomfort during the marrow aspiration so she added a third vial to my IV. Bless all the nursing angels I’ve encountered on this journey. Because of their care and compassion, I was unafraid of all the pain.
It was all so simple and faster than the procedure at Providence Hospital. It only took twenty minutes. My nurse called Gene at the hotel to pick me up, he was there in five minutes and whisked me home to Camano Island where I had a long lunch and an even longer nap.
Silver linings are everywhere in our lives. I try to appreciate them when I see them. My family has lived through four generations of alcoholism, but it wasn’t until my daughter was stricken with substance use disorder that I was motivated to go into serious recovery for myself. Losing her all these years to this cruel disease has been heartbreaking, and my serenity has come at a very high price. But though I’ll never get over these lost years with her, I like to think that she would be glad that I’ve survived and am learning to live well. This is how I honor her memory. She’s left a few flowers along the way, and I’m grateful.
The lymph node biopsy was another easy procedure. I had general anesthesia. And because it was so easy with only a small incision in my groin, I decided I was fine to get back to my busy routines. Which I did, full force.
After one week of acting as though I hadn’t had surgery, the dam broke in my incision. I woke up to more water in my silk nightgown, this time about a cup of lymphatic fluid. I spent the next few days changing my pants and doubling my Kotex until it finally stopped. When I saw the surgeon shortly thereafter, I got more reprimands about not coming to the hospital so she could drain it herself. She took a needle while Gene held my hand and tried to squeeze some more liquid out, but there wasn’t any left.
While we were with her, I said,
“Well, aren’t you happy for me? The lymph node pathology report said ‘no metastatic tumor.’”
“Yes,” she replied, “but it was inconclusive for lymphoma. The sample was sent to NIH for consultation.”
“Okay, now you’ve lost me. If I have no lymphoma in my bone marrow, how can I have it in a lymph node?”
“Marilea, you need to discuss this with your hematologist. Come back Monday so I can keep an eye on that incision.”
Foiled again.
Well, I kept up with all my activities, except swimming.
By February. I’d been hanging by a thread since early September. Seems like a long time. What have I learned in all this time? Patience. And acceptance of what I cannot control: scheduling and pathology reports.
Dr. Julia wasted no time in calling in a second opinion from Fred Hutchinson Cancer Center in Seattle. I had a Zoom consultation with a doctor there and she was concerned enough to order another bone marrow biopsy. Another one? I had to twist her arm for her to agree to sedation. The alternative was being awake but “tranquilized” with Ativan while two long needles of various thicknesses dug into my hipbone. Nah, I’m old school. Knock me out, please.
In the meantime, I’d been keeping up with my volunteer work, just keeping busy and distracted. Honestly, I’m so important, how would they manage without me at the thrift shop? Well, I was foolish. I got a raging staph infection in the incision and went on antibiotics for two weeks. My surgeon put me under house arrest. I couldn’t leave my bedroom.
A big lesson in humility. Note to Self: I’m simply not that important!
I made a nice hotel reservation in Seattle for the night before the early morning procedure on Tuesday, 2/6. My attentive surgeon at Providence insisted on seeing me before the procedure to see if I was sufficiently healed from the infection, and I passed inspection. A big sigh of relief! Gene and I had a nice dinner and night sleeping a couple of blocks from Fred Hutch. Getting there on time would be easy.
I’m glad that my personal physician is sharp and attentive. I only see her once a year because I never get sick. But when she saw my complete blood count (CBC) in August, she called in the calvary. She got me in to see a hematologist as soon as possible, and from early September, Dr. Julia became my doctor. She drew about ten vials of blood and sent me home for a month.
Then I came back and she ordered a bone marrow aspiration and biopsy. That procedure was an easy one, thanks, probably, to hordes of screaming meemies who, on previous occasions, had to be held down while the doctor excavated their hip for bone marrow. After years of that, the doctors at Providence Hospital decided to be more humane and offer sedation. Boy, was I born in the right century! I didn’t feel a thing. Out like a light and home in a few hours.
This bone marrow biopsy eliminated blood cancer, although it didn’t say what I did have. Yay. I was home free!
Dr. Julia, based on that bone marrow report, diagnosed me with L-HES, a rare blood disorder that occurs in about .03 percent of the population. I will write this once so I don’t have to write it again: lymphocytic-hypereosinophilic syndrome. So few people have gotten it that very little is known about it. And my chances of getting it? So, yes, she was skeptical. But it’s not a benign condition. It is treated with steroids, and if that doesn’t kill all the eosinophils in my blood, they will eventually invade my organs and kill me from that. So I sat around stewing with that diagnosis, eventually telling concerned family and friends Dr. Julia’s diagnosis.
Not so fast, sister! Dr. Julia is thorough and relentless. She wasn’t satisfied, so she ordered a PET scan. That was another easy procedure. I swear, the people at Providence Hospital really know how to coddle their patients. They gave me two (2) Ambien to take for the hour while I was waiting for the scan—so I would sleep while the radioactive agent was circulating in my system.
The exasperated radiologist said she couldn’t even pronounce what she was looking for. And then she caught me using my cell phone and reprimanded me,
“Don’t use your brains, Marilea. That’s what the Ambien was for. Just go to sleep!”
After an hour, I sleepwalked into the machine and kept sleeping through the procedure. Then Gene drove me home. But the results were troublesome. Dr. Julia found some “hot spots” (activity that often means cancer) in my groin and said I should have a lymph node biopsy, looking for what might be causing them.
And so, I graduated to expensive procedure #3. I am grateful for many things in my life, but excellent health insurance—which I earned from my years as a teacher—approved and paid for them all. A welcome silver lining in this cloud hanging over me.
“Detachment is not detaching from the person or thing whom we care about or feel obsessed with.
Detachment is detaching from the agony of involvement.”
Boundaries…boundaries…boundaries. Where do I end and the other person begins? A strong sense of self enables us to set clear limits with others. I was terribly enmeshed in my daughter’s life; I had never separated from her in a healthy way. Because we were so alike, I identified with her and felt overly responsible for her messes. Her problems became my problems, and it never occurred to me to let her tackle her own issues, both for her betterment and my own.
But thankfully my work in recovery has helped me face myself in the mirror and make some important changes. I made the necessary separation, first of all, from her. I no longer feel the “agony of involvement,” as I’ve let go of her illness and the ensuing consequences of her substance abuse. I can’t save her from herself. I can only love her and be here for her should she choose to walk with me in recovery.
