Tag Archives: MD Anderson

the last Mother’s Day

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mom and her mild mimosa

 

I was in Houston yesterday for about an hour, on a layover from Tucson to Miami for a research protocol meeting.  I was in Houston this time a year ago, following my mother’s first cycle of salvage chemo, for Mother’s Day.  Time in an airport hardly counts, but it felt familiar; out my little airplane window was the same flat expanse of land, the strangely even tree line (as if the trees got together and reached consensus to which height they would collectively reach), and the billowing cloud cover. 

Mother’s Day 2012 is looming, and my ability to deny the existence of this holiday is waning.  I wish I could embrace memories of years past, but I seem to remember nothing before Mother’s Day 2011.  I have fuzzy recollections of Sunday brunches, of rushing to find a card or order flowers.   Most are lost to me now.  I think it always seemed like a “Hallmark Holiday.”

Last year was the first time I saw her really sick.  B-Cell Lymphoma patients often get blasted with a five-drug combination regimen, and Mom sailed through that regimen with very minimal side effects. Naturally beautiful, she looked positively radiant when it was confirmed that her lymphoma was still growing, that she had not achieved a remission with the very aggressive initial therapy.  “I just feel so good!” was her mantra, all the way to MD Anderson Cancer Center where she participated in a clinical trial.

It was at the end of this first cycle of second-line treatment when I rushed into her hospital room in Houston Texas in May, 2011.  Who I saw there didn’t look like my mother.  She looked like the hundreds of cancer patients I had taken care of in the hospital, swollen, slumped over in bed, attached to an IV pole loaded with bags and tubes.  She was wearing oxygen. 

“Mom!”

She woke from her doze, flashed the lovely smile that would stay with her right until then end.  “Hi sweetie.”

She was nauseated and had diarrhea.  Always the optimist, she would squeal “I think I’m shitting out my lymphoma!” Still, she perked up and she was discharged on time from the hospital a few days later, in plenty of time to celebrate Mother’s Day.

We filled the Houston apartment with flowers, and I bought her bright pink loungewear that somehow made her look young, almost like a teenager.  I gave her a journal I had started with some of my favorite memories we had shared, what I loved the most about her.

“Please write to me too!”  I entreated. I knew the odds were against that we’d share many more Mother’s Days, although I also didn’t anticipate she’d be headed to hospice a mere 6 months down the road. Whether or not she was cured, I wanted to hang on to everything. I wanted to be able to run my fingers over the paper she touched, see her handwriting, memorialize what we shared, fill in the blanks of any forgotten detail.

“Of course!” She was always polite and agreeable.  But she never wrote a single word in that journal.

We made plans to go out to lunch at a café near the Woodlands, a rather-contrived shopping and residential development north of Houston.   It was busy there.  My mom was tired after the car ride, and Grandma was cranky.  There was a loud, bustling energy in the place which didn’t quite fit with our weary and stressed out group, but we did find a table and sat down. 

“You should have a mimosa!” I encouraged. This was a special day, her special day.  Nevermind she had just been blasted with 4 days of chemo and had constant low grade nausea.  That should step aside for what was suddenly an important holiday, right?

I ordered her one, and to her it tasted awful.  I made the bartender re-mix the drink (“you need to make it very mild” I ordered with a snotty tone). Still, things were different now, and she couldn’t enjoy what she used to, even if it was very mild. She was tired, she was diminished.  Between the toxicities of treatment and the fact that her cancer incessantly marched forward after only a brief stumble from the onslaught of chemo, lymphoma was starting to get the best of her.  Mother’s Day was before the series of terrible setbacks that defined the summer, before we knew just how resistant her cancer was, how hopeless the search for a cure would be.  But it was when I perceived the slow fade that I hoped was simply chemo side effects (“she’ll bounce back for sure, right?”). It actually was the quiet, whispery beginning of the end.

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dreams unlimited

I just smeared on the last of a bottle of lotion my mom gave me.  It was from the Body Shop,  “Dreams Unlimited.” We were shopping the weekend before they left for Houston, seeking a cure at MD Anderson. Grandma wanted lotion, and it was the only scent she liked.  I liked it too, so along with the bottle for Grandma Mom bought me one as well.  Its hard to believe I won’t get more gifts from her, and when things that remind me of her wear or run out I feel the loss all over again.

Its just lotion, and too perfume-ey at that.  It seems silly to cry about the end of a bottle of lotion.  But I can’t help myself.

I tried to save it.  I didn’t use it that often, but it started to evaporate in the bottle. Some things just slip through your fingers, no matter how much you try to hang on.

I wish dreams really were unlimited.  But sometimes they run out of gas, hit a wall, die on the vine, go up in flames.  Sometimes new dreams grow from the ashes of those that burned to dust, and sometimes not.  But there are dreams that just aren’t meant to be.  Heartbreaking, isn’t it?

my mother’s cat

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Sly. December 2011.

My mother’s cat Sly passed away this week. He started to decline during her final months. When he began biting my stepfather without provocation, it was clear the time had come for him to be euthanized.

My heart is heavy. This cat appeared in our home the day of my high school prom. My mother was desperately trying to finish the hem on my best friends prom dress when the doorbell rang. I went to the front door and my mother’s friend handed me a tiny orange kitten, which she had admired in a pet shop window. “Give this to your mother!” She flashed a mischievous grin.

I went upstairs with the squirming kitten. “Mom, Marilyn brought us a cat!”

My mother was hurriedly pressing out the prom dress, with the help of my friend who was wearing only her hose and heels, hair perfectly coiffed in a late-90’s updo. My mother, always cool under pressure, stared at me with a mix of disgust and amazement and responded with a tense “oh-kay.”

In this chaotic scene, I placed the kitten down at my feet. He strolled across the smooth hardwood floors, ate from our elderly cat’s food dish and promptly used the litter box. He had arrived. Even though as my friend and I were departing for prom (fully dressed), my mom muttered “we will deal with the kitten later!”, there was no doubt he was home.

He arrived during the last gasp of my childhood, a few days before my 18th birthday. I remember my exasperation as he’d run across my keyboard as I typed out my college papers. I would dance with him in my arms, spinning across those smooth hardwood floors to the music of the Gypsy Kings. Despite all of the comings and goings of young adulthood, when I would arrive at my Mom’s house after an absence he would always let me scoop him up and he’d delicately touch his nose to my lips.

He was definitely Mom’s cat. He slept curled up on her pillow every night.

He gradually became less active through the years, but seemed well at the time Mom left him in the care if a friend while she sought treatment at MD Anderson. When she returned, having lost the functioning of a kidney and her dream of a cure, Sly started behaving strangely. He would howl at random times throughout the day and night, a bone-chilling, painful moan. The vet found nothing wrong except for arthritis, but pain medicine was not effective.

In sharing our lives with these creatures, we form deep bonds which stretch throughout the years, a universal, archetypal connection. Mom and Sly had such a bond that he followed her to the other side.

He lived a good life, but died of a broken heart.

a life’s purpose

A certain school of thought purports that everyone has a life purpose, a mission, something that one must learn or do in this lifetime which illuminates a fundamental truth about his or her existence.  Its a nice idea, isn’t it?  It gives some order to the chaos, and clarity during the murky hours of life.  You could probably fill the Library of Congress with books, audiotapes, magazine articles with titles like “Identify Your True Calling” or “Finding Your Life Purpose (and then following through!).” This attractive concept garners some consumer spending.

I don’t know if we all have a life purpose. It can be hard to identify a unifying theme that ties together a long, complex and dynamic life.

My mom had a purpose, however, and hers was crystal clear: to be of service.

I naturally didn’t know her as a child, but suspect in many ways she took care of her mother from the very beginning. She dedicated her career to raising money for a range of causes she believed in, from providing family planning services in the 1970’s and 1980’s to community wellness services to seniors during the 2000’s.  She was almost always smiling, a big, infectious smile that made others feel good.  Blessed with tons of energy, she pumped it into her family, her friends, her colleagues. Kind, reliable and hardworking, she unfailingly did whatever needed to be done for everyone else. She listened, she gave, she shared. She had little inclination towards religion, but was more Christ-like than most anyone I’ve ever met.

Her own needs often fell away in the face of serving others, and this continued after she was diagnosed with cancer.  Until the end.  She pushed Grandma’s wheelchair until she couldn’t walk.  When she was actively dying, she tried to eat soup so Grandma wouldn’t worry about her.

During her illness, qualities that I often admired also frustrated me, pissed me off.  I wanted my mother, the constant caregiver, the ridiculously generous, to finally take care of herself a bit.  I had nightmares that all this outwardly focused kindness was depleting her, and if she could harbor some for herself perhaps she could beat that lymphoma.  She naturally attracted a lot of needy folks, and I would glare at the other patients in the clinic waiting rooms who would hone in and start blabbing to her about their problems: leave her the fuck alone. And then I’d shoot daggers at Mom: stop encouraging them!

She was aware of her life purpose. We talked about it once on a walk outside of MD Anderson Hospital.    I think I was lecturing her to go to a yoga class, get away from caregiving Grandma for a bit so she could focus on healing.  We sat down next to a fountain, surrounded by a bed of flowers.

“You know, this sounds kind of funny, but I’m here to take care of others.  You can best support me by letting me do that, because its what makes me feel good.”

I’ve often struggled with loving people as they are, and not as I want them to be. During Mom’s illness I was challenged again.  I wanted her to be someone more selfish, more normal.  But that wasn’t her. She needed to stick with her mission, her purpose.  It was the only way of being that worked for her.

 

 

We aren’t all meant to be servants during this lifetime– I know I’m not.  But we can be inspired to follow our own path with the unwavering dedication that my mother followed hers.

nowhere near enough

I remember sitting with my mother in August 2011.  She was weak from her recent hospitalization, but doing what she always did: expressing her perpetual concern for others.  In this case, it extended to a relative of a close family friend, who was welcoming and supportive during Mom’s time at MD Anderson.  This woman had to fly to Pennsylvania suddenly to care for an aging mother, who was in her late 90’s, had a feeding tube and was fighting pneumonia.

“Its not fair that Diane’s mother has to suffer so. I can’t imaging anything worse than watching your mother die bit by bit, at the end of such a long life.”

“I can!” I snarled.  But my mother missed the irony.  She couldn’t see, wouldn’t see, that I was watching her die, bit by bit, and would give the world to have another 4 decades with her in my life. I felt my personal tragedy trumped that of this other woman’s, who had the good fortune of many, many more years with her mother than was destined for me.  

Of course, it wouldn’t have been any easier if mom were 98, instead of 58.  I never would have been ready to say goodbye, snap the book shut, close the door, say “enough.”  Her illness, her suffering would never have been pallatable, even if it happened at a more “natural age.” Heck, in many parts of the world, 58 is downright elderly.  Many girls lose their mother long before adulthood, and navigate their entire lives without a mother.  They could be envious (and rightly so) that my mother saw me graduate from junior high, from high school, from college, from a masters program.  My mother knew my husband, and walked me down the aisle at my wedding.  She rocked me as a baby, but also had a rich relationship with me as an adult.  

I am fortunate for the time we had together, but it was nowhere near enough.

 

I'm grateful our story didn't end here

 

 

 

great expectations

prayer flag at the Amitabha Stupa

 

I have felt lost to hope many times during this journey with my mother.  Perhaps I have “known too much” as an oncology nurse to get easily swept away, or more likely I’m just not wired well in the optimism department. But there is magic afoot, and I feel it in my transforming and evolving (even if sometimes elusive) hope.

I may not always be upbeat about my mom’s cancer (and anyway, she has that covered very well on her own), but I have operated under some basic assumptions.  At the time of her disease progression in the spring, I truly believed she would get a bone marrow transplant. I worked as a BMT nurse for nearly 5 years, and I remember the faces of the patients I cared for. Many were decades older, and exponentially sicker. I never thought much about the reality that many do not make it to transplant, and even after her failed first stem cell harvest, I never acknowledged my mother could be one of them.

In the last week, the direction has shifted from desperately seeking stem cells to facing acute renal failure.  She is still undergoing testing, but this much is clear: she has worsening lymphoma that is obstructing her kidneys. In light of her poorly-functioning kidneys, she is neither a stem cell nor a drug study candidate. 

And so, you may ask, where do we go from here?

Home.

We still have talking and mulling to do, but Mom’s heart is calling her back to Phoenix.  MD Anderson is a tremendous institution, but if the shift is away from curative therapy to disease control and symptom palliation,we believe home is the place for her to be.  She may get some more chemo here first, plus the kidneys really need to start working better– but we want to get her home as soon as possible. 

Tonight, Mom was moved from the stem cell unit up to the lymphoma floor tonight– a symbolic transfer as well as a geographic one. Bone marrow transplant patients stick out at MD Anderson (the mask and gloves give them away). Mom was the odd-woman-out on the stem cell floor.  All the nurses gave her a hard time for walking around the unit without her mask on, even though her white blood counts are excellent and its not necessary. The blow of moving away from the thing that could cure her cancer hits me from time to time, but for the most part, I feel hope. 

 Hope that she will heal in the peace that surrounds her at home. 

 Hope that she may get a remission and stay there for however long we can make it last. 

I even have hope that she might get so much better that down the road stem cell can be considered again. 

We came to Texas with our hearts full of hope, and they still are.  Our expectations have shifted, but our dreams are still alive.

The Bind

My mom is in The Bind. This took me by suprise– I didn’t think she would be in this situation so soon, but here we are.

Cancer sometimes wins though sheer endurance- a marathon victory rather than the 500 meter dash.  The body can only handle a certain amount of chemotherapy.  If the cancer can hang on, eventually the bone marrow becomes depleted, and the patient can’t recieve any more life-saving treatment. 

Nearly 4 weeks after her last round of chemo, my  mom hasn’t recovered her counts sufficiently for more chemotherapy, and she isn’t producing the stem cells that must be harvested prior to autologous bone marrow transplant. Her lymphoma is now obstructing her kidneys and she is hospitalized with renal failure.  What she needs is more treatment– but her body can’t handle that yet. 

As I write this in the Phoenix airport on my way to be with her during this precarious time, I do feel some clarity and some hope.  There is evidence that her blood counts are recovering. She might be able to get chemo soon afterall.  There is still hope that we may be able to collect stem cells this week.  Perhaps a new chemo will work on her cancer in a way that the previous treatments have not.  All is not lost.

In The Bind, there is a fine balance between hope and despair, and I tip between the two on a hourly basis.  But I’m trying to cultivate a sense of calmness before my family begins a journey of difficult choices and hard decisions. 

I’ve played many roles during my mom’s illness: nurse, counselor, medical interpreter, and reporter.  But I’m trying to honor my most important one: daughter.  I want to be the best daughter I can possibly be, and soak in every minute of this precious time with my mom.