Cancer Mom v. Mom

Yesterday night I opened up the old gmail account and saw a new email from HuffPost Live marked “time sensitive.”  Well I opened that pup right up, curious what was going on.  I had pitched myself as a pediatric cancer advocate to them in September, thinking that might be a good time to do a piece on childhood cancer awareness.  I got no response from them.

That’s cool.  I’ve come to embrace that everyone is not a pediatric cancer advocate or as passionate about it as I am.  It makes sense to me and I completely understand that raising awareness is a process.  Ten years ago, pink did not have the same impact or significance it has today — awareness and advocacy take time to develop.  I resolved to try again next year, crafting a more compelling pitch that would be harder to ignore.

Well, it turns out they liked the pitch.  The producer who wrote was very kind and knew it was short notice, but she had the perfect opportunity to feature a HuffPost Live spot aimed at raising awareness about childhood cancer.  I would be paired with a few other pediatric cancer advocates, including HGTV’s The Property Brothers.  Turns out, those guys are really great supporters and advocates themselves.  Yea, Property Brothers!

Boo!

Today is Halloween.  The feature is scheduled for 5:30 PM, Chicago time. That is PRIME trick-or-treat time.

I said no.

My childhood cancer advocacy has become very important to me, albeit unexpected.  After Donna died, I was pretty resolute that I was done with cancer.  It had taken by Mom and daughter, two amazing Donnas, and I didn’t want to willingly give it any more of my life.  Mary Tyler Dad and I agreed on this point.  Well, things change.

A little time passed and the immediate sting of Donna’s death had lessened a sliver.  After a couple of years, I found myself more and more engaged with the gross disparity between funding of research for pediatric and adult cancers.  The evidence is so damning, that it is hard not to want to contribute what I can and actively use my social media voice to do so.  With last year’s publishing of Donna’s Cancer Story, I had the childhood cancer bug.  I was and remain committed to raising $ to fund better and more research so that fewer families will know the pain we live with daily.

And despite this passion and commitment, it was easy for me to say NO to HuffPost Live.  Today is Halloween.  My boy has been looking forward to this day for weeks.  Months really.  At 5:30 PM, I know just where I want to be and it is at his side, holding his hand, walking from door to door, begging neighbors for candy.

One of my children is alive.  Another is dead.  I parent them both.  Sometimes, the needs of the child who is alive trump the needs of my child who is not.  Harsh as that is, it is my truth.  The further I get into advocacy, the more time and attention it takes, the greater the need for me to balance these needs, which are at times opposing one another.

One potential solution that makes sense to me when I feel pulled, with obligations to advocacy v. obligations to Mary Tyler Son that very well might overlap one another, I think I need to choose life.  In the ring of cancer v. life, I think it will be important to always choose life.  Today is the perfect example.  Spend a few hours prepping for a 20 minute appearance with other childhood cancer advocates and worried about my hair and lipstick, or spend that time prepping and anticipating and participating in tricks and treats.  I choose Halloween.  I choose holding Mary Tyler Son’s hand.  I choose living over cancer.

I think Donna understands.  At least, I hope she does.

 

Donna’s Cancer Story: Chemo 2.0

This is the twentieth 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.

Mary Tyler Dad and I were walking a fence this month, and at any moment we could drop.  On one side of the fence was terror, despair, anger, bitterness.  On the other side was love, hope, Donna.  We chose Donna, we chose hope, we chose love.  This is not to say we didn’t flirt with the dark side, or come to know, intimately, what living life in fear was like, but we chose to believe that all things were possible.  We chose to hope that Donna would grow up.  We chose to let Donna guide us to a life that was richer and deeper and more beautiful.  

Donna in stripes

(photo courtesy of Anne L. Geissinger, Pixeldust & More)

When I would pick Donna up from her babysitters, she never failed to look up at the late autumn sky, “Mama, what a beautiful night!”  In the morning, it was, “What a great day to fly a kite!”  The life in her was simply infectious.  Being with her was the only balm for the fear that could so easily take hold of us in her absence.  She demanded that you see and enjoy the world we lived in.  This tiny, mighty creature was a powerful force of calm for us.    

Despite Mary Tyler Dad and I struggling, honest to God struggling this month, Donna was thriving.  On the outside.  On the inside, in her head, just underneath her skull near the lining of the dura, behind her left ear, her tumor was also thriving. 

Blanket Donna

(photo courtesy of Anne L. Geissinger, Pixeldust & More)

At the beginning of this month the chemo protocol selected involved an antiogenic paired with a more traditional chemotherapy.  The function of the antiogenic (Avastin) was to cut off blood supply to the tumor, which had always been particularly vascular, to prevent growth, and the chemotherapy (Irinotecan) would follow behind to shrink and kill the tumor.  The cocktail was to be administered in Day Hospital intravenously through Donna’s port on a bi-weekly basis.  There were side effects with these drugs, but very minimal compared to the earlier inpatient protocol of the previous year. 

Donna would not lose her hair (hooray!), nor would her blood levels tank, requiring few, if any, transfusions, and it involved six hours in clinic/day hospital every couple of weeks.  A piece of cake, relatively speaking.  To measure its efficacy, the docs had determined scans would occur three weeks after the first dose was administered.  Shrinkage, stability, or growth under 25% would be considered a success and the treatment would continue. 

I felt very at peace with this plan as I had had a dream just a few nights after learning of this latest relapse.  I awoke about 3am, shook Mary Tyler Dad up from his sleep with my dream knowledge that we must “choke the beast.”  It felt so certain.  I am not a scientist or an oncologist, but this dream delivered the idea to me that the way to beat Donna’s tumor was to cut off its blood supply, to choke it.  We had tried cutting it (surgery) and poisoning it (chemo) and cooking it (radiation), all without success.  Choking it was the way to go.  I was certain, and that certainty bought me some peace. 

In typical cancer sucks style, those first scans showed growth in the brain tumor of 25-30% with a stable spine.  Oy vey.  So much for my prescience.  It took almost two weeks of consideration before we learned that we would push forward with this protocol, despite the growth.  Surgery remained off the table, as our neurosurgeon was uncomfortable with the direction of growth of the tumor and it’s proximity to an area in the brain that controls speech and comprehension.  God, do I hate cancer. 

Pensive Donna

(photo courtesy of Anne L. Geissinger, Pixeldust & More)

There is a clarity to life when so much is at stake.  I’ve no doubt that death row inmates have felt something similar.  Mary Tyler Dad and I worked to maintain a routine and normalcy for Donna so as not to upset her sense of security.  I continued to work three days a week.  Mary Tyler Dad kept his full schedule.  With the help of family, we cooked and cleaned and maintained a home.  Donna was disciplined and boundaries were drawn.  She knew there were expectations for her and we held her to the standards we would hold our child who was not in treatment for cancer.  Donna needed that.  We did, too. 

Despite the chaos that cancer rained down on us, we worked hard to never treat Donna as a sick child.  She looked older, was growing taller, and had fully morphed from toddler to young child.  She was a joy and easy to parent.  Once, after his check up to ensure Donna’s brain wasn’t swelling from the drugs, our oncologist asked her, “How is it that you are as sweet as you are?”  Donna considered that question a moment, turned to look at me, and responded, “Because I love my Mommy and Daddy so much.”  The doc and I both took a moment to pick our hearts up off the floor and wipe the tears from our eyes.   

Again, you see the disconnect between the photos of Donna taken during this month and the reality of our lives.  I think our instincts were guiding us to make good and sound parenting decisions.  The first three photos were taken by a close friend who captured Donna in her many facets — her shyness, her joy, her coyness, her beauty.   

These next two are simple snapshots.  There’s nothing like a little mortality scare to get you to try and capture every moment you can.  The first is taken just before weekly dance class.  Look how her eyes shine.  She was lit from within, my girl.  That is a crocheted spider on Donna’s hair clip and it was the only hair clip she would wear.  Oh, the money I wasted buying cute bows and ribbons.  Donna was simply not that type of girl.  No fuss, no muss; she didn’t need any adornments.  

Dancing Donna

This next photo is one of my all time favorites.  It was taken Halloween day, 2008.  Donna had been fickle with her costume choices, but early the day of, settled on being a “Fairy Flower.”  Huh.  I got to work and with some scissors, staples, and love, came up with what you see.   The day was brilliant perfection.  It was warm and mild.  There isn’t a lot of Halloween action in our neighborhood, so we went north to Evanston to trick-or-treat with friends.  Donna had a blast.  She was bopping along from house to house, hoarding candy she would never eat (Donna never had much of a sweet tooth), surrounded by those that loved her most, and dressed as a Fairy Flower.  Life does not get any better. 

Donna as Fairy Flower

Tomorrow:  The North Pole