Category: Pediatric Cancer

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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.

 

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Governor Romney, Hope Matters

Let me preface this post by assuring you it is not a political entry, despite being inspired by the words of the current Republican presidential candidate.  I fully realize that the context of Governor Romney’s words pertained to his issues with President Obama’s stance on Mid East turmoil.  I am not writing about Mid East turmoil, or Republicans, or Democrats.  I am not writing about politics.  I am writing about hope, something I do a lot of around here.  Please do not view this post through a political lens.   

Yesterday, as I was prepping dinner, I was listening to NPR.  I turned the radio on mid-story, and heard a clip of Mitt Romney addressing the Virginia Military Institute.  “Hope is not a strategy,” is what I heard.  It was a bit like a slap in the face, as hope is my strategy.  Hope is what gets me through my days, you see.  On the bad days, I hope for better days, and on the good days, I hope for more — more joy, more life, more of the Good Things that keep me going.

Governor Romney, of course, was not discussing Cancer Moms and what they need to get through their day.  He was discussing foreign policy specific to the Middle East.  I know that.  The man is in the midst of the fight of his life and he is doing his best to connect with voters, appear presidential, and do what needs to be done to move in to that Oval Office come next January.  I get it, I do, but still, I was struck.

It made me think about hope and what it means to me, to you, to our world.  Merriam Webster’s online edition defines hope as, “to cherish a desire with anticipation,” or “to desire with expectation of obtainment,” or this, “to expect with confidence.”  Huh.  Not only do I not agree with Governor Romney on this, I don’t agree with Merriam Webster either.  Dictionary.com does better, “the feeling that what is wanted can be had or that events will turn out for the best.”  Still no cigar, but it is closer to my own definition of hope. 

In the midst of Donna’s illness, in June of her last summer, after we learned of the terminal nature of her cancer, my in-laws sent a book along to us.  Written by Jerome Groopman, M.D., it was called The Anatomy of Hope:  How People Prevail in the Face of Illness.  I picked it up with trepidation.  Self-help books are not my bag, and this looked suspiciously like a self-help book, complete with a single green leaf on the cover.  Yeah, I’m too cynical to do self-help. 

And I am absolutely one of those gals who judges a book by its cover.  I’ll look it over, but if the blurbs and first few paragraphs don’t grab me, I will put that sucker down.  This is the first paragraph of the Introduction to The Anatomy of Hope:

“Hope is one of our central emotions, but we are often at a loss when asked to define it.  Many of us confuse hope with optimism,  a prevailing attitude that “things turn out for the best.”  But hope differs from optimism.  Hope does not arise from being told to “think positively,” or from hearing an overly rosy forecast.  Hope, unlike optimism, is rooted in unalloyed reality.  Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me.  Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future.  Hope acknowledges the significant obstacles and deep pitfalls along that path.  True hope has no room for delusion.”

At what, I hope, were the most devastating moments of my life, Dr. Groopman’s words spoke to me.  Choosing hope is not a pie in the sky venture.  It is not all lollipops and tutus and rainbows and ice cream.  It is stone, cold, hard work.  Work, people.  WORK.  Choosing hope, my personal strategy of choosing to be hopeful, does work for me.  Every day it works for me and every day I am grateful that I have hope in my life.  I see parents who have lost children to cancer who do not have hope.  They scare the bejesus out of me.  We bob along in the same ocean, those parents and I, but we are not in the same boat. 

I wrote a Facebook status about Romney’s words last night and one of my friends wrote the most profound response, “Dismissing hope can only be done by people who have never needed it to survive.”  I dare say this friend (yo, Amber) is right.  I will be the first to admit that I need hope.  I need it like I need oxygen, sunlight, and water.  Hope is necessary to my very existence these days and without it, I would be joining those other folks in the sad, bitter, angry boat.  I don’t want that for me, my husband, or my son.  I want better for us.  I want the joy that hope invites into my life, the possibility of a better future, the lightness of love and wonder and peace.  I want hope. 

So to you, Governor Romney, I say, “Hope IS a strategy.  And it works.  And we need more of it, all of us, to see us through these troubling times we find ourselves in.” 

I am Mary Tyler Mom and I approve this message.

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PTSD Post Cancer

After four hours in an ER yesterday, we got the diagnosis of flat feet for Mary Tyler Son.  Hallelujah!

I had started noticing a slight limp about ten days ago.  Mary Tyler Dad didn’t see it.  My brain is hard wired for fear, so I tried not to worry.  When it started, it was more like a slapping of his foot down on the floor.  It morphed into a limp as the days progressed.  And it would come and go, too.  When I asked the afternoon crew at his school last week, they had not seen it.  That limp stayed on my radar, but I tried not to worry.

Last spring, the boy had injured his foot after repeatedly jumping off a two foot rock into the grass below.  He limped then, too.  While I couldn’t tie this limp to an incident like rock jumping, I told myself it was nothing.  It was not cancer, it was not brain cancer, it was nothing.  I kept trying to tell myself that.

One of Donna’s first symptoms was a limping walk, that quickly morphed into needing to hang onto things for support.  Limping touches some nerves around these parts.

Honestly, I was proud of myself for being able to manage the anxities associated with this limp.  I didn’t freak out too much when Mary Tyler Son awoke in the middle of the night on Monday, whimpering about foot pain.  I breathed deeply and gave him some ibuprofen.  I resolved that if the limp still existed next week, I would follow-up with something then, hoping against hope that it would simply disappear.

Yesterday, after dropping him off at school and on my way into the office, I got a call.  It was Mary Tyler Son’s teacher, “Everything is just fine, your boy is great, but we have all noticed a limp and we think he might need different shoes.”

BOOM!  Her words cut me like a thousand sharp blades.  Those words so closely resembled the words of Donna’s babysitter when her symptoms started in March 2007.  I had started to notice some slight changes in Donna before others had, but one day, picking Donna up in the afternoon, her sitter said, “You know, she’s having some trouble walking.  I think she needs new shoes.”  BOOM!

I quickly explained to the teacher that the shoes were not the issue, that I had noticed limping for over a week and that I would consult a doctor ASAP, which I did.  Before I got into the office, I had an appointment for yesterday afternoon.  Then I made the mistake of Googling, “acute limping in three year old.”  The words ‘leukemia’ and ‘osteosarcoma,’ bone cancer, kept popping up.  I could not ignore them.  As I have described before in Donna’s Cancer Story, that seed of fear in my stomach morphed into a watermelon in approximately 1.7 seconds. 

That, my friends, is PTSD in action.

This is the fourth scare we have had with Mary Tyler Son in the three years since Donna has died.  The first was a series of early morning headaches, a dangerous sign of brain tumors in young children.  Those just mysteriously disappeared.  The second was limping coupled with what looked like petachaie, a common symptom in leukemia.  That turned out to be hand, foot and mouth disease.  Last spring’s limping was the third scare.  And now this. 

Each of these scares has resulted in nothing other than the healthy boy we enjoy today.  Mary Tyler Son is growing, strong, funny, and smart.  He is so much like his sister in so many ways.  And so different in so many ways, too.

I went to the ER knowing that if we went to our local pediatrician, the tests that would be ordered could not be performed at 3:15 on a Thursday afternoon.  We would have to wait.  And wonder.  Waiting and wondering are not things I tolerate well.  Not me.  I catastrophize.  I imagine the worst.  Yes, I go there.  I always go there, and I suspect I always will.  I go there because of the PTSD that cancer left as a parting gift.  The grief and sadness were not enough.  Sigh.