Cancer Can Suck It.

Five years ago today I stood over my daughter as she lay in a hospital bed. She had been admitted the night before primarily just to expedite an MRI because of some concerning symptoms and loss of developmental milestones over the previous few weeks.  She awoke early, around 5, groggy, and vomiting.  I changed her diaper and she said in a slurred voice, “Change your diaper, change your life,” something I had told her time and time again at diaper changes.  Moments later, she lost consciousness and was rushed through the halls of the hospital to a CT machine.  Within two minutes Dr. Kane, a PICU physician, came out and spoke the words we will never forget, “There is a mass in your daughter’s head.”

So very much has happened in the five years since that horrible, terrifying morning.  We immediately moved to Cancerville and our lives would never, ever be the same.  We lost our innocence, Mary Tyler Dad and I, with those words.  We lost a lightness and an insulation from tragedy that will never return.

Those losses would multiply over the years.  A valued job, gone.  Four miscarriages and the idea of making another baby together, gone.  A sense of control, false as it may be, gone.  A sister for Mary Tyler Son, gone. Donna, gone.

Fuck Cancer

Cancer took our innocence, our fertility, our daughter, so, yes, cancer, fuck you.

Cancer did not take our hope, our joy, our resolve.

Tomorrow, the charity we started during Donna’s nine day vigil, Donna’s Good Things, will host it’s first St. Baldrick’s shaving event. St. Baldrick’s is the largest private funder of pediatric cancer research in the world.  $20 million has been raised in the three months of 2012 alone.   The organizer of the event is a reader of Mary Tyler Mom who was so inspired by Donna’s life that she wanted to do something to demonstrate that inspiration.  This is one of the missions of our charity — to encourage others to do Good Things in Donna’s name, helping to fulfill the potential of a girl taken much too soon by cancer.

I have been running around like a ninny this morning, through the rain and storms, and pulling along a surprisingly game Mary Tyler Son to every stop.  I can think of no finer way of telling cancer to suck it than to finish preparing for an event that will raise over $60K for pediatric cancer research.  I can think of no finer way to honor our beautiful girl than to raise money for research that will benefit the 46 children that will be diagnosed today.  Sadly, none of our efforts will help the seven children who will die.

One child we may be able to help tomorrow is a young woman, just 16, who was in treatment for leukemia when Donna was in treatment.  She was always very kind to Donna, friendly, supportive, and a bright ray of sunshine.  Sadly, she has just relapsed and is in need of a bone marrow donor for a transplant. No one in her family or in the current national registry of bone marrow donors is a match.  Thanks to some quick thinking by our organizer, and the receptive and positive nature of the local Be the Match representative, tomorrow’s St. Baldrick’s event will also host a bone marrow drive for our friend.  Yes, cancer, you can suck it.

The many individuals who have made tomorrow’s event possible humble me deeply.  We have dozens of shavees coming to Chicago to shear their heads.  Each of them has raised $ and will, after tomorrow, be a visible method of raising awareness for pediatric cancer.  Shavees are coming from as close as next door (thanks, Neighbor!) and as far away as California, Michigan, Georgia, and Indiana. These individuals, many of them women, honor Donna and all children in treatment for cancer.   That is a lovely way of telling cancer to suck it.

Mohawk  A shavee.

I’m still learning how to balance grief and joy and life and sadness and wifing and mothering.  But even while learning, I am triumphing over cancer every day.  Cancer has taken much from me, but it has not taken away the hope I have, the joy I feel, the resolve to never let Donna be forgotten.  Cancer drives me to help those that will learn today that their beautiful child, the light of their lives, carries a diagnosis of such a beast of a disease.

Thank you to all of the individuals who have already ensured that tomorrow’s St. Baldrick’s event hosted by Donna’s Good Things will be a mad success — those who have offered their heads to be shorn, those who have  donated some top notch items for our silent auction, those who have used their words and blog platforms to raise awarenss, those who have opened their wallets to honor Donna, or another person affected by cancer, and to those who will swab their cheeks in the hope of being a match for someone in need of stem cells or bone marrow.

Together, collectively, in a barbaric yawp, we are telling cancer to suck it. That is the best way imaginable to honor Donna’s life, and as her Mom, I am inexpressibly grateful to you for the assist.

Donna in Pea Coat

Donna’s Cancer Story: Choosing Hope

This is the thirtieth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna’s thirty-one months of treatment.

Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what’s happening with your treatment.  Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo, and Secondary Cancer Estates.  Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen.  Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody.  Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer.  Some will live in Scarred Acres the rest of their lives.

Our family knew the move to Grieving Heights was on the horizon, but we weren’t ready to pack just yet.  There was a beautiful surrealness to this month.  It felt normal.  Normal is something you crave when you live in Cancerville.  I was doing dishes one day, one of the chores I had missed with all our supportive family around to take care of the details, when I was rinsing out an empty ice tea bottle.  I unscrewed the cap and noticed words on its underside:  “Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree.”  (Martin Luther)

It’s crazy how the words on a discarded bottle cap can change your life, but these did mine.  That they were spoken by the architect of the Protestant Reformation is simply ironic bonus.  They stuck with me for days, Luther’s words, popping in and out of the precious moments with Donna spent doing the most mundane things.  An ordinary life, full of park visits, and naps, and errands, and simple dinners was a haven to us.  Every single thing in those days felt innordinately brillaint and beautiful and fleeting.

As the words marinated in my thoughts, I began to see the connection between them and our mantra throughout treatment to ‘choose hope.’  I wrote about it at the time:

“When all of this began so long ago and I first typed the  words ‘choose hope,’ my guess is that most folks assumed the hope was for Donna’s cure.  If I’m honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well.  To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes.  For so long, and to this day, it is the only way to live.  Without hope, how would I wake up in the morning?  Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon? 

As much as I hoped for a healthy Donna, there were other things I hoped, and still hope for.  Hope to get through the day.  Hope that there will be another day with Donna.  Hope to find the joy in life.  Hope to not become bitter or angry.

Hope to find a way to live with the cancer in our lives without it overtaking our lives.  Hope to adopt a child, knowing that Donna would not be able to carry one herself due to treatment and to provide her with the knowledge that familes are made in all different ways.  Hope that when Donna was uncomfortable or in pain, that it would be transitory and she would bounce back.  Hope that [Mary Tyler Dad] and I would remain strong together. 

Hope that Donna would find the world a lovely, beautiful, wondrous place – – a place she wanted to stick around in.  Hope that the docs would stumble upon something that somehow hadn’t cured the kids that had come and gone before Donna.  Hope that our lives would find their way back to normal, even if that looked different.  Hope that if Donna did die, [Mary Tyler Dad] and I would somehow survive.  Hope that [Mary Tyler Son] would not be burdened by our grief.  Hope that joy will always be with us.  Hope that we will not be alone. 

The hopes change and continue to evolve, as they should.  At the base of all of them, though, is that we, this family, whatever that may look like, will somehow survive.  Some of the choices we’ve made along the way have pointed to this.  Buying the larger home two years ago; pursuing the fancy pants pre-school for Donna, a place we felt could nurture her smarts and spunk; welcoming [Mary Tyler Son], or ‘Little Fatty Chumpkin,’ as Miss D calls him; enrolling Donna in dance class and pursuing it despite relapse after relapse after relapse. 

These have all been choices, conscious and deliberate choices, made in the face of cancer. These are our apple trees.  And my latest hope is that these trees will sustain us when our world does go to pieces.  That these trees will feed us and shade us and shelter us from the inevitable storms that will be.”

Stylish Donna 

In that vein, as Donna’s most desired apple tree, we sent her to pre-school.  More than any other thing, Donna wanted to go to school.  Good Lord, if there was ever a child that walked this earth that was built for school, it was Donna.  Mary Tyler Dad and I plotted and fretted and steeled ourselves for how the staff that had so hopefully accepted Donna the previous winter would react to our decision.

Turns out, with loving and open arms.  We met with Donna’s three teachers and the school RN and the Admission Director and devised a plan.  We discussed how other children might react and concerns their parents might have.  We came to the meeting holding a letter from Dr. Stew, explaining why Donna physiologically was not able to be toilet trained (Stew would have done anything for Donna, even enable her with the one place she could and did exert her control.  “I am too young to sit on a toilet,” she told us time and time again.)

Donna painting

It’s hard to grasp and capture the suspended nature of those weeks Donna was in school.  I felt like such a Mom.  A happy mom, a loving mom, a busy mom, a SAHM.  The reason why I was staying at home was immaterial.  For those brief weeks of Donna thriving despite the beast growing inside her, having its way with her under our helpless watch, I got to be the mother of two.  I took Cancer Mom’s cape off and got to be simply, Mom. 

In these days, our neighbors, Chabad Lubavitch Jews, encouraged us to travel to Queens, New York with Donna, where the leader of the Hasidic movement was buried.  They believed that his burial place had healing powers and thousands travelled there daily and were cured from illnesses as critical as Donna’s.  If we were not to travel, they encouraged us to send a prayer via email and it would be placed at the Rebbe’s grave. 

We are not religious, Mary Tyler Dad and I, but I embrace the belief that no one truly knows what is and is not in our world, or what happens after we leave this world.  Each day as Donna would nap, I would type the same message to the Rebbe and think about it as it made it’s way to Queens, was printed, folded, and placed next to the Rebbe’s grave:  “May she live until she die.”  That was my wish for Donna.  I did not ask for her healing or a postponement of her inevitable death, I humbly asked the Universe to allow Donna to live until she died.  No suffering.  No pain.  No lingering.  May she live until she die, was my mother’s plea, my last wish for my dying daughter. 

Mama Hugging Donna

Tomorrow:  The End

Donna’s Cancer Story: The Bubble

This is the twenty-eighth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month.  Each post will cover one month of Donna’s thirty-one months of cancer treatment. 

Swinging together 

During this period, Mary Tyler Dad and I opted to step inside what we called The Bubble.  The Bubble was a happy place.  Donna was with us there, so was Mary Tyler Son.  Cancer, the bastard, was not invited.  Yes, The Bubble was invitation only and it was an exclusive affair.  There was only room for four, so even close friends and family had to watch us from outside.  In The Bubble, it was always a perfect 75 degrees and sunny — kind of like San Diego. 

To be with Donna could be heartbreaking, and sometimes impossible, if we allowed ourselves to think about her death.  We learned to detach from the reality of her dying in her presence.  I think, if we were different parents, it could have easily gone the other way — detaching from Donna.  That was unacceptable.  She was like a joy magnet.  She kept us grounded.  She made everything bearable.  Mary Tyler Dad explains how The Bubble worked:

“You know, I’m able to forget how the situation is . . . that we’re teetering on the brink, with no way back when we fall.  It’s terrifying, of course, but it also reminds me to take as much delight as I can.  I love talking to Donna.  It breaks my heart that I can’t remember every single conversation we have, word for word, because they bring me such pleasure.  It’s easy to be exhausted, but it’s also easy to be delighted, and it’s vital to keep my head straight to let myself feel that delight.” 

The Bubble also had nothing to do with denial.  Mary Tyler Dad and I knew exactly what was happening.  We talked about it and sometimes allowed ourselves to imagine it together.  One day he recounted how he felt after taking six month old Mary Tyler Son for a walk to the park during Donna’s nap, “This is how it will be.  This is what life will be like without Donna.”  We both flirted with those thoughts.  Full disclosure, I had flirted with those thoughts since March 23, 2007.  Part of how I cope with hard things is to imagine them, try to feel and anticipate them, get comfortable with them. 

Rainbow Brite 

(Note to Cancer Parents:  baby legwarmers are fantastic picc line covers; Donna had a whole wardrobe of them that made her happy.)

So, yes, denial was not in play, but our defenses were alive and healthy.  The Bubble, because it was our defense worked beautifully.  I have some painful memories of not being very good at communicating with my closest friends or Donna’s other family during this period.  In their voices or their eyes I could see their profound sadness and loss.  I am ashamed of this, now, but shut myself down from that.  It was protective.  And, crazily, I felt responsible for their sadness.  I chose The Bubble because it was better.  Simple as that.  Donna’s sadnesses were related to silly things like having to get out of the tub too soon or Mary Tyler Son gumming up one of her books with his teething.  Those sadnesses I could handle.  We worked to maintain a schedule during these weeks, to create structure and normalcy for Donna.  The medication schedule called the shots, but we did what we could to work around them.  Normalcy and a schedule meant Mary Tyler Dad left for work in the mornings, me and the kids ran errands.  That helped preserve The Bubble, too. 

Sometimes, in the midst of the most mundane tasks, The Bubble was at risk by my wish to inform the folks we came in contact with with just what was happening.  Our dry cleaner or the nice lady at the McDonald’s drive through window or the cashier at the grocery story.  I fantasized completing our brief interactions with something like, “Hey, you know my daughter has cancer.  Yeah, and she is dying.  Right now her cancer cells are duplicating at an alarming rate and it will kill her.  Soon.  Isn’t that messed up?  I know, she looks perfectly fine!  Okay, thanks, and have a nice day!”   Sigh. 

During this month, Donna was the first child from Children’s Memorial approved for a new respiratory therapy meant to influence her immune system to fight the cancer cells specific to her lungs.  MD Anderson in Texas was calling the shots, e.g., running the study, and allowed Donna to use it under compassionate care standards, or off-study.  We were told she was the youngest child to receive it.  It is twisted when you hear that and feel a sense of pride.  The drug was leukine sargramostim and it was delivered via nebulizer.  Because it was so toxic, and I was nursing an infant, the treatments were given outside on our deck in the open air.  Mary Tyler Son and I could only watch from behind glass.  Donna would sit on her Daddy’s nap, studiously watch Dr. Seuss’s The Grinch Who Stole Christmas and Horton Hears a Who, and hold a purple dragon mask over her face while steam, the toxic treatment, escaped out the dragon’s nostrils.  This was a learned skill for Donna who historically hated masks.  She did what she needed to do.  As we learned from one of her favorite books at the time, this made her brave.  Yes, my girl was heartbreakingly brave, each and every time it was asked of her. 

Our days became a bit of a maze working around medications, but still, Donna’s quality of life was excellent.  She was sunny, funny, clever, bright, feeling well.  She loved her brother and liked nothing more than to stand over him and make him laugh with her protracted spelling of his name.  It never failed.  She would shout his name, then proceed to spell it, with squeals of delight pouring out of her baby brother.  The more he squealed, the more Donna rolled her letters.  That six month baby boy loved his sister so.  His eyes would naturally gravitate to her whenever they were in the same room.  They loved one another.

Brother and Sister

Often during these weeks, I would have to cancel or postpose hospice visits.  Technically, they were palliative visits, as Donna remained on treatment.  The fact that it was understood the treatment would not result in cure was immaterial.  The nurse or social worker would call and ask to come by.  “I’m sorry,” I would say, “We’re off to the acquarium, zoo, dinosaur bone museum, insert attraction of your choice here.”  They were imminently patient with us and I was grateful for that.  God bless home nurses and the work they do, but that job is just inherently difficult to schedule.  We knew from years of experience that if you schedule a home visit, you will wait.  Donna was too busy to wait.  She did not have time to wait. 

Donna’s fourth birthday was this month, too.  As lovely as The Bubble was, this birthday, her last, almost broke me.  I knew there was a lesson to be learned in having a terminally ill daughter who did not feel sick, but trying to learn that lesson with the artifice of “HAPPY BIRTHDAY!” was so very hard.  It felt cruel.  Donna’s birthdays had never been easy.  On her first, I was downed with a migrane.  On her second birthday, the idea of a third was questionable.  On her third birthday, we were planning a surgery just days later, thinking a fourth was unlikely.  On her fourth, we knew she would not see a fifth.  During these days, Donna started using the phrase, “When I’m 8, I will do this,” or “When I’m 10, I can do that.”  A piece of me died each time she said it. 

Four at Candlelite

But Donna did not know her fate.  She was a child proud to be growing up.  She was four!  She deserved a party.  She wore a hat.  We had some playmates over to build pizzas.  We smiled and ate cake and celebrated.  We went to the joy with Donna, clutching The Bubble the whole way. 

Tomorrow:  Whiplash