Tag Archives: chemotherapy

500 days

505 days ago my mother died.

520 days earlier, she received her first chemotherapy treatment. She’s been gone nearly as long as she was sick.

Much can transpire in a single moment.  The moments gently layer upon each other, and accumulate mostly unnoticed until maybe a year and some change later you look back with a gentle shake of the head and say to yourself, damn, a lot has happened in the past 500 days.

Maybe you conceived and delivered the baby who is suckling at your breast.  Many of my friends did.

Maybe you lost your mind, the last remnants of your freedom.  My grandmother did.

Maybe you became a vegan and lost 40 pounds and now spend your free time hiking in the mountains. My stepfather did, and does.

Maybe your marriage ended. My sister’s did, my best friend’s did, mine did.

A handful of months, 500 days or so– enough time to snuff out a life, to create a life, to reclaim a life.

And what will I do with the next 500 days? What will you do?

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.

all we have

Some days, being a nurse in oncology exhausts me to the core.

No, I don’t know if you will puke, if you will have diarrhea, if you’ll get an infection. I don’t know if your cancer will come back, if your tumor is bigger, if the chemo is working, if the cancer is in your liver, your bones, your brain. I don’t know if you’ll live to get married, or to see the ocean again, if you’ll be able to have a baby, if you’ll see your grandchild graduate high school.  If you’ll bury your spouse, or if your spouse will bury you. I don’t know if you’ll die in 6 months, 12 months, 12 years.  

Clearly, I don’t know much.

But in this tiring day in clinic, I had the blessing of caring for a patient who has been through every permutation of chemotherapy known to (wo)man for breast cancer, who looked me straight in the eye and said:

I know I’m going to die.  But I’m going to enjoy the life that I have, however long that is.  

She meant it.  She’s ready for the inevitable, but she’s grounded in the present.

We are so busy making plans for a future that may or may not come.  We grind away at jobs in order to get rewards down the road, we delay the telephone calls, the new dress, the vacation. I’m not saying that planning ahead is a bad thing, but it must be tempered with a grounding energy and a dedication to this very moment:

Take a breath. Feel your chair beneath your body, the ridges on your keyboard.  This is all there is, right now.

So own it.

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.

 

 

why it sucks to have a parent with cancer: reason #79

It goes something like this…

Your head hurts.  Correction– its killing you.  Trobbing pain, over your right temple and shooting to the eye.  Its making your morning cup of coffee feel like a chore.  The sheer prospect of suffering with this thing for the rest of the day is bringing on a serious depression, and its not even 8AM yet.

Prior to taking any analgesics, you do what any self-respecting, independent young professional would do: whine.

“Mom!”

She turns her bald head to you, facial features chisled from her recent weight loss.  She is nauseated from her recent chemotherapy but trying to choke down breakfast anyway. “Yes, honey?”

“I… uh… nevermind.”

After a lifetime of complaining to Mom about innane little problems that generally self-resolve within an hour, I’m not always sure what to do.  I could whine to her, and feel like an ass.  I could not whine, and feel I’m somehow being disingenuous.  Plus, I’d miss out on the satisfaction of voicing  a problem to Mom and getting soothed with a honeyed tone reserved just for her child– even if she happens to be well into adulthood.  

Thanks a lot, cancer!