Survivor

Today is National Cancer Survivors Day.   A day to celebrate and honor survivors everywhere.  A day to plant seeds of hope for future fights.  I thought a lot today about the road to here; and somewhere in reminiscing, I remembered one particular day in Tessa’s treatment.

It was the second week into Tessa’s second round on a bright Saturday morning.  Tessa had been in isolation due to influenza for about a week.  The effects of isolation as well as the effects of chemotherapy were catching up with her.  She needed a break and so did I.  Just as we were both about to reach our breaking points, a volunteer happily waltzed in like the breath of fresh air that we both needed.  I waited as Tessa adjusted to the new face in her room.  Ten minutes later, I grabbed my computer and my phone and headed to the seating area on the main level where the sun shines brightly through the walls of glass.

I found an open chair and set myself up to clear my head.  To my right I could hear the hurried sound of little feet followed by adult steps.  A little boy of about five years zipped by to the chairs across from me.  His mom and dad were just behind.  They set down their things and had a brief conversation while the boy ran circles around them.  They had my attention, but I was pretending to work behind my laptop.

The hospital photographer, adorned with his gear, greeted the family.  They discussed options for pictures and Christmas greeting cards that they could make from the pictures they were about to take.  It was obvious that the boy had been or was a hospital patient.  The photographer set up his things, and he let the little boy take test pictures by letting him push the shutter button.  Mom pulled a small green chalk board out and carefully brought it to her son.  They were ready to take his first shot.

The chalk board was turned my way.  The word “Survivor” written beautifully across the board with a small yellow ribbon above.  I froze.  Survivor.  The yellow ribbon being the symbol for childhood cancer, and the word across it applauding his fight.  He did it.  I could not see his whole face, but I could see from the side how much his cheeks were pushed back from the size of his smile. Dad placed his arms around his wife as they watched their son take some of the most influential pictures of his life.  As tears rolled from eyes, I bowed my head to privately dry my cheeks.  That little boy held up his sign proud.  I thought to myself, he is here.  He is a survivor.

Suddenly that break that I was needing so badly felt too long.  I collected my things and heading back to the fourth floor.  My pace became faster by the step.  In what felt like the longest elevator ride back to our floor, I told myself that someday that would be Tessa holding her own “Survivor” sign.  Someday that would be her family kneeling beside her to take the same pictures.  Someday her smile would stretch that far again.  And someday she, too, would be a survivor.   

And in times of uncertainty and despair, when hope was just out of reach, prayers rushed in.

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Survivor, she is.  Hallelujah and amen.

I thought hard about what it means to be a survivor.  In order to be a survivor, the odds must be beat and the adversity must be toppled. But the word survivor only exists because there are those who do not make it; never because the size of the fight was not enough.  They do not lose because they gave up.  Their fights end this way because they gave everything they had and there was nothing left to go to battle with.  Some say that is when cancer wins.  I say that is when peace beats cancer.  Freedom from this disease comes two very different ways.

While I do not have Tessa captured holding a sign indicating her survivorship, I do have her here with me every single day.  And, that my friends, never escapes me.

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There Is No Good Cancer To Get.

I took a break this morning between dropping Tessa off at school and an appointment for myself.  I stopped at my favorite little coffee shop and waited for my latte so I could go sit in the corner and return long awaited emails.  As I waited, a woman approached me.  “That’s a sweet sticker you have there,” she said.  Confused by what she was referring to, it took me a moment to remember that Tessa placed this sticker near the bottom of my shirt this morning.  I smiled, “Oh!  Thank you.  I forgot my daughter put it there this morning.  She was putting these stickers on everything today.”  The sticker reads I Care For Kids With Cancer. We have a few of those laying around that somehow resurfaced after a good house cleaning this week.

IMG_20150602_085803She paused and looked at me with a curious smile, and in that moment I felt very driven to tell her that my daughter was a cancer survivor.  That should explain this sticker, I thought, since it seemed to warrant some sort of explanation.  Clearly I caught her off guard.  “Oh wow.  May I ask what kind?”  “Leukemia,” I said.  After brief conversation regarding her slight connection to the peds cancer world, came a phrase that punched me in the stomach and nearly knocked me to my knees.  “This seems a little weird to say to a stranger but, you know…if you’re going to get cancer, leukemia is the one you really want to get. That’s the good kind.”

No.  No it is not.  There is no good cancer to get. From the time Tessa’s doctors first uttered the word leukemia to us, I can assure you it was not at all what we had hoped for or wanted. There were no high fives or cheerful embraces.

So I stood there quietly with my eyes staring at her blankly, holding on tight to my tears. In what felt like ten minutes (but was realistically five seconds), I relived the horror of what leukemia did to my daughter and what it stole from my family. Eight months of worry leading up to her diagnosis.  Six and a half grueling months of chemotherapy and hospitalizations. Nearly ten weeks of isolation. Debilitating nausea and violent vomit attacks.  Handfuls of hair laying on her pillow and on my lap–lord how that falling hair hurt me. Trips to the hospital barber to shave the last few strands of hair from her beautiful head.  Skin rashes and mouth sores.  Central lines. Tape stuck to and ripped from her body on a daily basis. Sponge baths…awful sponge baths.  Well over ten bone marrow biopsies, and too many needle pricks and lab draws to keep track of at this point. All of this and so much more at the tiny age of two.

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Certainly this woman wasn’t suggesting that Tessa’s courageous fight against cancer was a breeze, was she?  Because she believes leukemia is the “good” kind?  No, she had to be referring to the survival rates…right?  Just for the sake of that speculation, take a look at St. Jude’s statistics for AML survival rates here.

I hope these are not viewed as “good enough” statistics because, to me, they are not.

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I collected my thoughts, recalling what I have learned from my therapist:  we can’t do anything about what people say, but we can do something about how we react.  I took a deep breath and tried to think of an appropriate response.  “Well, sort of.  For the kind of leukemia my daughter had and given the fact that she also has Down syndrome, statistically there does tend to be higher survival rates for this situation,” I said, followed up with “…but that isn’t always the case and, after all, those are just figures.”  Here we go again with statistics and ratios and probability.

What the hell kind of answer was that, I thought to myself.  Tell her she has no idea what your daughter went through.  Tell her about the relapse scare. Tell her how rare Tessa’s case was.  Tell her how about the fears–all of them.  Tell her there is no way she understands that gut-wrenching pain.  Tell her how much that just hurt you.  Come on, just tell her!

But I couldn’t.  Because I could see that she believed she was coming from a good place, and I believed her intentions were from the heart even though her words cut me deep.

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Just because Tessa survived does not mean her fight (and victory) is any less valid than someone else’s.  It also does not mean that anyone’s else’s fight who did or did not survive because of any kind of cancer is any less honorable either.  And I can also tell you firsthand that after living the cancer lifestyle, others I knew then with cancer weren’t vying for someone else’s.  Do you want to know why?  Because every kind of cancer sucks. Everyone is fighting to survive–no matter what kind of cancer they have.

The only victory lap I ever did because of leukemia was in honor of Tessa as she walked her first survivors lap at our family’s first Relay For Life event.

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I left her with this.  “She is 3.5 years old now and doing very well.  She is in full remission.  Thank you.”  She smiled and wished my day well. Maybe I should have told her.  Perhaps I could have shed some light on my viewpoint about cancer.  But I didn’t, and I feel okay about it.

I took my latte back to the plush chair in the corner and reflected on what had just happened.  Only a few tears this time.  This is not the first time someone has made a remark about Tessa, Down syndrome or her leukemia–well intended or not–that just hurt.  I know it will be far from the last, too.  These times are unpredictable.  They appear out of nowhere, and I am forced to confront words and phrases I would rather avoid.  Sometimes I wonder if these specific experiences happen to me so that I can use them as a platform from which to share my voice.  Or maybe that is just how I choose to deal with them.  Either way, as much as these times sting, I am glad to share my perspective.  Even if just one person’s view changes because of it.

Just because it is over, doesn’t mean it is ever really over.  I will stand by that forever.  Those on the outside often forget that.

I wore that sticker on my shirt intentionally after my coffee shop run-in for God only knows how long today.  Somewhere throughout the day I lost it; but it didn’t leave my mind.  Had I only known that this sticker would have stirred up so many emotions in me today, I may have taken it off.  But man, am I glad I didn’t.  I do not care how old or young a person is.  I am not interested in what specific kind of cancer someone has.  All for one and one for all.  I am throwing my fist up in solidarity to everyone facing this awful disease–in all of its forms. To the woman in the coffee shop and to people everywhere, please know this:  There is no good cancer to get.  Period.