Donna's Cancer Story: One Year Later

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I feel a little bit like I am walking on air this September, weightless, unanchored.

For the first time since 2006, I am neither living through nor writing about our time in Cancerville.  This year I am simply cutting and pasting.  Literally, cutting and pasting, moving the daily installments of Donna's Cancer Story from this site onto the Huffington Post operating system.  This makes me grateful, relieved, able to expand my lungs in full breaths.

Cancer is a badass bastard.  And once you move to Cancerville, you never leave.  Your subdivison changes, but you never leave this place.  Since 2009, Mary Tyler Dad and I have lived in Grieving Heights, the subdivision everyone fears the most.  The resale values in Grieving Heights suck, as no one wants to buy there.

This year, with a little distance and minus the pressure of writing every day, I feel grateful to be grieving rather than terrorized by some of the day-to-day realities in Cancerville.  Many grieving parents might disagree with me wholeheartedly and I know some that would give anything, anything, for another hug or moment with their child.  The terror of living through Donna's cancer was at times almost physically impossible to bear.  It would send me into a dark corner of my home, Donna and her Daddy playing somewhere else, he much more able to be with Donna in the dark times.  I would grab the phone and call either my father or my sister.  I would wail.  I would rock back and forth, trying to soothe the intense fear I felt, the terror, really, which is fear's evil twin.

The grief I feel now, I manage with more ease.  I see grief as the endless landscape of the rest of my life.  I will always live in grief, it will never go away.  Donna's Daddy will always live in grief, too.  Gratefully, we are there together.  His sadness mirrors my sadness and vice versa.  Sometimes I feel guilty for thinking that, let alone writing, that, in effect, acknowledging that living without Donna is easier than living with the thought of losing Donna.

Does that make any sense?  Am I a horrible person, cold and numb in my grief?

Three years ago we were nearing that last month of Donna's life.  In the end of September 2009, she started to show signs of tumor progression.  Tilting her head to one side, her left arm weakening.  We could no longer ignore what would be imminent -- our daughter's certain death.  But still, she went to pre-school two mornings a week.  I drove her there, gym shoes on my feet, Mary Tyler Son in the car seat next to her, his stroller in the trunk.  The five weeks that Donna was in pre-school were some of the happiest of my life.  For three of those weeks, six days, I got to feel like a MOM.  Like a run 'o the mill, harried housewife.  It was bliss.  True bliss.  I feel grateful every day for those weeks.

Two weeks ago, Mary Tyler Son started at the same pre-school.  Today is his sixth day.  He is so very happy there, just like his sister.

The process of writing Donna's Cancer Story was intense.  Intense.  For the first ten days or so last September, I would, at some point over the course of the day, read thirty days worth of Donna's CaringBridge journal.  Mary Tyler Dad and I were prolific.  In the absence of a religious or school community to rely upon, CaringBridge became our virtual temple, church, mosque.  For many periods, we would write almost daily updates, often late at night.  So I would read thirty days of that.  Then I would pour through thirty days of photographs from the same month to cherry pick two, three, or four to supplement the words I had yet to write.

Usually late, around 8:30 or 9 PM, I would sit down to write.  On some days, usually the ones I was working, I would not have had the opportunity to read through CaringBridge or sift through photographs until this time.  Each post took about 2-3 hours of reading and photo selection, then 1-3 hours of writing.  That was approximately 3-6 hours a day.  Every day.  By mid-September, I had lost the ability to stay up past 10 or 11.  I would read and photo select before bed, then rise early to write, on work days, that would be rising about 4 AM.  By the end of the month, that last week of September, all bets were off.  That's when I stopped being able to get up early or stay awake late.  The last few posts weren't complete until 3, 4, or 5 in the afternoon.  Last September nearly done me in.

All of this was possible because I am married to a gem.  A true gem.  Mary Tyler Dad supported my efforts, though no doubt, they were wrenching for him, too.  While he wasn't reading the CaringBridge or looking through photos, he was reading my posts, and holding me in my tearful exhaustion, and both mothering and fathering our son.  I thank my lucky stars every day that I found him and that he found me and that we both recognized one another.

So a year later, Donna's Cancer Story is not the wrenching labor it was last September.  The actual posting is more of a task, a technical chore, than an emotional odyssey.  I am not the wrung out dish rag I was last September.

This year, I feel focused.  Laser focused.  I am more aware and receptive to the stories strangers send me about their responses to Donna's Cancer Story.  I have space to both hear and feel what Donna has meant to you.  I am grateful, so very grateful.  I am angry at the shameful lack of funding for pediatric cancer research.  I am sad for the forty-six families that today will learn their child has cancer.  I am devastated for the seven American families that will lose their child today.  I am proud, both of my writing and ability to bring people to Donna's story, ensuring she will not be forgotten, at least not right now, and of Donna herself.  I am so completely proud of my girl.  She remains amazing, three years after her death, and you all see what we saw and were privileged to nurture and bask in -- Donna's wisdom, her wonder, her joy.

And our family is doing okay, good enough as they say.  At Donna's memorial service I talked about our need to 'figure it out,' our life without Donna.  We are doing that.  Mary Tyler Son ensures that every day of his life.  We are not what we were, what we could and should have been, but we are what we are -- a loving, grieving family, incomplete, but figuring it out.

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Profound thanks for witnessing our girl, our sadness, our loss.  Thank you. 

 

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  • Thank you for sharing your thought and your Donna with the world. Today is my niece's one-year "remembery", and it's been a difficult day. I'm trying to hold on to the last line of your essay - "We are not what we were, what we could and should have been, but we are what we are -- a loving, greiving family, incomplete, but figuring it out." We're still trying to figure it out.

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    Last September, I was introduced to Donna, and I am so, so thankful I was. I would read the daily blog post, usually with a box of tissues, and anxiously await the next day's post. Even though I knew the outcome, I loved reading about her life - about her dance class, her preschool, and how you and Mary Tyler Dad tried to make her life as normal as possible.
    Last September, I had no personal experience with the world of cancer. What I was reading was heart wrenching for sure, but I had no firsthand idea how a cancer diagnosis could make you feel so helpless. I know now. On May 29 of this year, my father, 53 years young, was diagnosed with Stage 4 Lung Cancer w/ Brain mets. I was thrown into a world of radiation therapy, chemo, PICC lines, and hospital stays. It is terrifying beyond belief.
    It kills me to know that I probably don't have much time left with him. The odds are not good - only 2% make it to the five year mark, and there's absolutely nothing I can do about it. This makes me feel enraged. It makes me want to scream, "Why my father??", but really, why anyone? I HATE cancer. Cancer is a nasty, nasty bitch.
    I guess I just wanted to say thank you. Thank you for giving me a glimpse into your experience with cancer. It might sound strange, but I find re-reading Donna's story to be comforting. Oh, how I wish that cancer had spared your girl, but just reading your words and knowing that I'm not alone in my agony....well, it helps. Thank you, MTM, and God bless. <3

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    (I preface this comment with the fact that what I am about to type in no way means I see what I am going through as remotely the same as what you experienced. I mean no disrespect nor do I see my pain as the same as yours in any other way than that they are both losses.)
    I understand exactly what you mean about grief being easier than the fear of the loss. For almost four years now I have been living in fear of losing our home. It is the house that I brought my youngest son home to. It is the only home either of my boys know. It is the place that my husband and I planned to raise our family in, grow old in, celebrate holidays with our grandchildren in and eventually die in. It was to be our family home for always. Unfortunately life and financial circumstances had other plans. We are coming into the final months now. While I still hold out a sliver of hope we might find salvation through a miracle, chances are less than slim. Best case really is that we'll be able to short sell and move on, scarred but still kicking.
    I find myself feeling this weird sense of relief that the end is near. That the time is quickly approaching to emerge from the cloud of pain and fear and start to live again. For years I couldn't see how it would turn out, how I could go on and now I am starting to see the light.
    So while it is nowhere near the same, I understand what you mean. Living in fear means wondering how you will go on, unable to picture life after the worst happens. Living in grief means the worst did happen and by grace you are still standing. The landscape is forever changed and things will never be how you thought they would but life goes on. Like you said, you figure out how to go on.
    No, you are not a horrible person, so far from it. You are a survivor and you give all of us, facing what ever our battle may be, courage that we can stand, we can fight and we will survive. Thank you, from the bottom of my heart for sharing Donna and sharing yourself. Know that just by sharing you've already done a world of good. <3

  • Reading your beautiful blog today and viewing Donna's storysong from the radiothon are filling my heart today.
    As I saw Donna's name in the sand today, I thought you might be interested in this blog. It is beautiful and Christian's beach is a beautiful place to honor those children loved so dearly.
    I live in Arlington Heights, but it gives me peace to know my nephew Jack's name is written in the sand and remembered in Australia. <3
    http://namesinthesand.blogspot.com/

  • I understand exactly what you mean. To me, the moments leading up to an irrevocable loss, especially that of a child, are far, far more traumatic than living with the grief following the loss. Keep on being the intimate, grieving family that you are and yes, be proud that your writing (and MTD's absolutely beautiful writing in the Caring Bridge Journal as well) makes the wise and beautiful Donna continue to thrive in spirit.

  • ". . .living without Donna is easier than living with the thought of losing Donna." Someone asked me why I didn't cry at my six year old son's funeral. I spent fourteen months crying, knowing that I would lose him to inoperable brain cancer. His death was a relief from the pain of wondering how sick he would get before he died. Thank you for being so brave and sharing your story.

  • I get it. I so get it. I lost my mom to colon cancer in January, after a two-and-a-half year battle. For 30 months, I was obsessed with "what's next" as cancer terrorized our daily lives, always promising that what was next was indeed worse than what was happening now. Now, being cloaked in sadness has left me numb -- but no longer afraid. That fear can be paralyzing, pushing your heart into your throat for hours, days, weeks on end. Kudos to you for having the strength to continue fighting for innocent babies -- and their families -- who are still being terrorized.

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    Thank you for sharing the process it took you to write Donna's (and your) story last year.

    Oh, my, this post made me cry at the end . . . in part because I so related to the what could have been. I also think about my own little family - the what could have been. (My son died 4.5 years ago from his heart and lung defects, so not cancer.) My 2 year old should have a big brother to play with.

    Also, we didn't have to "wait" as long for our son to die, but even those months were so difficult. I was relieved, in part, when he did die. We didn't have to worry about him being in pain anymore. We didn't have to anticipate/worry about phone calls with bad news in the night any more. I was ashamed to admit that it was a relief, though. It didn't seem like that was an appropriate response.

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    In regards to your comment "Sometimes I feel guilty for thinking that, let alone writing, that, in effect, acknowledging that living without Donna is easier than living with the thought of losing Donna." I can totally relate to this because my dad died from esophageal cancer within 4months of his diagnosis. The first month was wasted in my denial of him having cancer then the remaining was just enjoying him as it was too late for him to have any treatment. So the remaining months it was constant worry and crying if each time I saw him would be my last and I was doing research on his cancer to see if there was anything we missed or could still change. In the end the whole family was with him and were able to say our goodbyes. But the instant he died I felt complete relief that he was in no more pain and not having to worry about him dying anymore because it was done. My dad was the first person in my family to have cancer and be a close family member it was an eye opener of sorts to really prioritize your life.

    On one of your last journal entries from Donna's Cancer Story you had a comment from Donna that she said she could "feel her body telling her she was dying." I thought that was such an amazing comment because maybe we each do feel that when our time comes that our bodies are shutting down. Death is crazy and a completely foreign land for all of us. I just hope its all we what imagine it to be.

    Your daughters cancer story touched my heart in many ways and still makes me cry imagining all you went through in her cancer journey. Your daughter was a fighter until the end and you were all there along for the journey to enjoy her life.

    Peace to you and your family.

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