Tag Archives: bone marrow transplant

informed consent

Shortly after my mother was diagnosed with the lymphoma that would take her life, I was chatting with her and my stepfather about upcoming appointments.  I don’t remember the details, but he and I started anticipating the course of her treatment “first this, then that, followed by something else if another thing happens.” We were trying to plot out the twists and turns of a journey that is unpredictable, although we try our best to pretend otherwise. The conversation rapidly turned into my stepfather and I talking about my mother’s illness without including her in the discussion.

Hey, she interrupted. You know, its my choice.

What do you mean? We turned our heads towards the woman we loved.

Its my body.  I will decide whether I want treatment or not.

And she did decide.  She made many choices along the way.  She filled out informed consent forms.  She received printed lists of side effects, weighed pros and cons, talked to doctors and nurses and friends and family.  She said yes to chemo, many times over, knowing that it could trigger a cascade of events that could be life threatening. She said no to surgery, no to palliative radiation at the end of life, procedures that had the potential to give her more time, less pain.  Or maybe not. Who knows?

When I was working in bone marrow transplant, I thought the informed consent process was complete bullshit.  How could people know, really understand, what they were agreeing to? The pages and pages of potential risks and benefits, but really what it comes down to is a single patient plunging into the cold water. Some resurface on the other shore, some don’t, and you can make some predictions about probabilities but more or less, these outcomes remain the domain of powers greater than human insight. We can ask a patient to sign on the dotted line of consent forms, but for all the information and teaching and collaborating, any health care choice remains a leap of faith.

Life isn’t much different.  I’ve made choices that showered me with blessings, others that haunt me, a cluster of silvery specters that float in the corners of my mind during in the early morning hours. We all have moments where we reach a crossroads, and sometimes we don’t even realize these moments are occurring, have occurred, until years later. I’ve hit the junctures, I’ve tried to be informed, as best as I could be, but I didn’t really know what I was doing.  Its a plunge into icy waters, a journey into the unknown, a grasp at the hand of God.  I’m still swimming.

sorrows weave a web of joy

I spend my days caring for people who are living with loss. Sometimes its the loss of an identity as a healthy person.  Sometimes its the loss of a long life expectancy.  Sometimes its the loss of a breast.  The loss of estrogen. The loss of energy, vitality. The loss of long, sexy hair that trails to the small of a back. The loss of trust, the loss of a belief that everything will be okay.

I don’t know what it feels like to have breast cancer, and I didn’t know how it feels to be a mother to a dying child when I worked in pediatric bone marrow transplant, and I didn’t know how it feels to be a homeless, chemically dependent and mentally ill AIDS patient when I was a med-surg nurse in a county hospital. But life has a funny way making us let go, and let go, and let go some more, and after all this letting go we turn to other humans, who murmur yes, I understand what its like to see the most precious dreams fly away, I have felt the texture of the walls and the weight of the thick black air of a world of darkness, and I have come out on the other side. I have always enjoyed my patients, but I’m a different kind of nurse now.  Its subtle, probably not noticeable. But there is a slight shift in the air, a longer gaze in which I say without words I can better understand you. 

Sadly, loss breaks a few of us and there are casualties along the way, but more often than not, it simply destroys that which no longer fits. We need the heartbreak in order to open up more fully. And with this miracle of the human spirit we can then weave together the threads of our sorrows with those of others. We bond. We make a web of connection, and it captures the joy and blessings of this bizarre, difficult, beautiful world.  The details of our individual suffering is always unique, but in the collective experience of loss, we turn to each other with a soft and courageous stare and say I may not know, but I understand. 

my work

Here I go, breaking my rules again… (the one about not writing about work)

Its been a hard few weeks at the office.  Even though I feel I’m divinely suited for this job (nurse practitioner in oncology), sometimes its overwhelming, and I think maybe life working in urgent care or a weight loss clinic wouldn’t be so bad.  This last month has been full of disease progression, hospice discharges, and death.  People I have grown to love, struggling with pain, dying too young.

My years of working in bone marrow transplant taught me a certain brand of detachment–  how to stay rooted in the present and not be attached to a future for the human beings in front of me.  It was a powerful lesson in letting go; I couldn’t look into the eyes of children with high risk leukemia day after day and worry about what was awaiting them next month or next year– it was unlikely to be a healthy, normal childhood. I had to care for and advocate for my patients, do the very best job possible every day, but turn over the outcomes and what would happen tomorrow to the universe, God, Buddha, Mother Mary, physicians, someone or something else other than myself. Because there are patients that will die despite a favorable prognosis and everyone doing the right thing, and there are patients that will somehow fight their way out of the grip of death and against all odds, survive. You never quite know in this business.

My patients these days are healthier and many of them are cured.  Even the women with aggressive, metastatic disease usually live years rather than months. I see them week after week, month after month, and I grow very fond of them.  We laugh together, we hug, we share photos and stories, I meet their best friends and relatives.  Its hard to say goodbye after such a long relationship.  I thought I was getting better at this but now I’m not so sure.  My loss of my mother has made me more sensitive to what the families are going through. As I work through my own grief I can feel what the surviving loved ones are experiencing.  It hurts.  I also see my mother in some of these patients and feel as helpless as I did to fix things during her illness.  I sit in the exam rooms with my dying patients and look down at my empty, searching hands.

And yet perspective is everything.  I am greeted with success stories every day.  These women plunged down the rabbit hole of cancer treatment and emerged on the other side, bathed in sunlight. As elusive as those rogue cells can be, resorting to every dirty trick in the book, sometimes cancer is completely slaughtered with the arsenal of treatment.  It happens.  An everyday miracle.  A billion cells, a million microscopic explosions in the battlefield of the body.  Victory down to the smallest unit of life.

Even when the war cannot be won, the enemy is usually held at bay for a while.  Mom’s cancer was very drug resistant, but I still think chemo bought her time.  Important time.  If she were here, I think she’d say that the nausea and the hair loss and the fatigue was worth it for her.

So, what I do weighs on me sometimes.  But it matters.  I can’t forget that.

the last Mother’s Day

Image

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.

assimilation

 

It has been 3 months since Mom passed.  I am in awe at how different I feel. Some of it is no longer having to live with a fear that started in my gut, crawled all the way up to my throat and choked me, 24 hours a day. There were a million things to be afraid of:

Mom needing a bone marrow transplant
Mom not being able to recieve a bone marrow transplant.
Mom having a bad reaction to chemo. 
Mom’s bone marrow not recovering to the point of being able to get chemo.

Most of all, Mom dying.

Well, I don’t have to be afraid anymore (not that being afraid made any difference, and in fact just made the final months of her life less pleasant for me, but it was unavoidable). I’m sure it contributes to feeling lighter, but its not the whole story.

I don’t hear her talking to me.  I don’t smell her.  I don’t see her in crowds.  I don’t visit with her in my dreams. I don’t feel her hands in mine.  I don’t taste her cooking.  But I do feel her all around me, and I feel like I have assimilated her.  There are parts of her that are now my own. I feel her in action– in the motivation to do kindness, listen to others, and pursue my dreams.  I am smiling more.  Some of her light is now my own.

This shift in my personality, my spirit hasn’t been fully realized.  There are relationships and activities which have been neglected through my mom’s illness that I have not returned to yet.  Due to the grief and the many constraints on my life, they may be neglected for some more time yet. But I’m getting back into the swing of things.  I’m coming through this transition a better person.  Mom wouldn’t have it any other way.

 

 

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.