A desolate beauty and the perspective that cancer offers

Today I went for a run with my daughter and the dogs.  It was cold out, a crisp winter morning, but lacking the snow cover that would make it feel overtly Christmas-like.  We are fortunate to live in a neighborhood that is nestled into the national forest.  It is truly beautiful.


Lauren and I stopped at the lake and sat for a bit in the stillness and quiet.  I thought about how different that this place feels from the summertime when the air is filled with birdsong, cicadas, children's laughter and more than anything else, the color green.


The trees seem naked and cold.  The earth is covered in spent leaves, interrupted only by brown tree trunks and frost.  It is a lonely landscape, where you can now see quite far, view the contours of the land and detect streambeds that had previously been hidden by the summer foliage. 


For some, looking upon this landscape, it would have seemed bleak and despairing---a loss. The summer warmth had left. All of the vibrancy of autumn had been stripped down. It was still and cold. But Lauren and I could look across the land and witness countless trees including some truly enormous oaks that a few short months ago were completely hidden from view.  They stood together in the denuded forest, their presence pronouncing a quiet strength, and each form proclaiming a solid footing.


I talked to Lauren about how in the bustle of daily living, you can get lost.  You can fail to see the forest, for the trees. Sometimes, you can even miss the trees for the abundance of leaves obscuring your view. 


The Ramers are having a bit of a pause right now, as we anticipate my son's surgical biopsy later this week.  It is one of those moments that your life swivels on.  Unfortunately, we have become somewhat accustomed to such moments.


As we walked back home with the dogs, Lauren and I ran into our neighbors, who we seldom see.  One is a pilot, who had reached out and generously offered his help when Brent needed to return from New York after surgery three years ago. We exchanged pleasantries, but I was suddenly struck by how large the forest is, and how numerous the trees. 


When cancer enforces a pause in life, removing all of the comfort and distraction of routine living, you can see so much farther. The forms and structures of the landscape become evident.  The character of the terrain is revealed.  And we are reminded that many surround us, who in our busy moments of daily living, we cannot see, or simply fail to notice. 


While I detest cancer, it is the vehicle by which I have seen a great forest, a community of strength, of support and of compassion. Vast evidence of love has been revealed to me in our exposed and vulnerable state.


So even in this, I find an uncommon beauty.

Reviewing life, inspired by a bowl of mashed potatoes

Looking back can be really hard sometimes.

I have a dear mutant friend whose son has just been diagnosed with osteosarcoma.  I have been trying to provide support, encouragement and tips for what could lay ahead for them.  This requires that I recall our journey of three years ago in detail, revisiting the challenges, and remembering the fear. 


I am so grateful to be on this side of the nightmare.  I shake myself, shedding the worries that cling to those events.  I have to remind myself that our reality is different now.  Those trials are currently behind us.  May they always remain so.


Looking back can also be lovely

Last night at dinner, Brent thoroughly delighted in a side dish of mashed potatoes.  I was transported back to a time before our challenges, when the kids memorized poetry with me, and learned interesting things that had far less of a practical application than they currently do. 

"Mashed Potato/Love Poem."  by Sidney Hoddes

If I ever had to choose between you

and a third helping of mashed potato,

(whipped lightly with a fork

not whisked,

and a little pool of butter

melting in the middle...)

I think

I'd choose

the mashed potato.

But I'd choose you next.

We pulled out the poetry books from the bookshelf in the kitchen, and read through some of our favorites, right there at the dining room table.  In our home, we have always been drawn to two types of poems: those filled with beauty, and those bursting with humor.


This exercise was rather like recalling a dream for me, not in the moments upon waking, when the details are fresh and crisp, but after lunchtime with the fuzzy bits coming to your mind all out of order.  Last night I longed for the warmth and quiet of my bed, to somehow return to that now foreign story, filled with poems, innocence and promise.

But seldom can you revisit those sorts of dreams.


Looking forward can be exciting.


My life has taken a big turn, obviously, from what I had ever imagined for myself.  I am working with some terrific and passionate people in the non-profit world.  I am doing things that I would never have found the gumption to do, coming from that quiet domestic place that I enjoyed with our children. 


While I would have preferred to never have been wrenched from that peaceful life and thrown most unwillingly into a world of doctors and researchers, there is joy to be found in what I do now. There is optimism.  There is anticipation, mixed with utter bewilderment that I am trying, and actually doing some of these things.


It is very different from my former life which focused on home and hearth, teaching our children history and poetry.  But it is also very different from living on a pediatric oncology floor, so I am grateful.


Looking forward can be intimidating.


I think about the future, of our children going off to college. Of research.  Of the things that I would like to get done before we might become medically busy again.  There is a pressured determination that comes with LFS, to reach goals while you are afforded the opportunity.   I see it in my mutant friends.  I see it in myself.


But I suspect that most mothers have a similar sense of urgency, as their children grow up and prepare to leave.  Our family dynamic will be different when Alex goes off to college in a year and a half.  I am trying to make the most of this time together, particularly as we have missed so much of it in recent years.


The changes that we have gone through will prepare us for the transitions that will come. I know that change is the only constant.  I try to be open to what the future will bring.  I am really hopeful that it will again be filled with poetry, humor and beauty.


But Brent says that he would be satisfied if it simply offered an extra helping of mashed potatoes.

Living (and laughing) LFS

The Ramers have terrific support and I could never properly express my gratitude for the folks that have helped us.  However, my friends in Ohio, while always willing to lend an ear, will tell you that there are so many things that they simply cannot understand, relate to or fathom.  Even the parents of children with cancer, who understand the worry and fear, cannot appreciate the breadth of our concerns, because they are limited to one type of cancer. I am not in any way minimizing their worry, but with LFS, we are never done and need to be on alert for every brand of cancer.  This concern is justified by the four cancers that we have dealt with thus far.


The disconnect between our freakish reality and that of the people that we love was terribly isolating.  But this loneliness melted away when I found others with LFS, making friends and finding support from fellow mutants who understood our challenges and had experiences similar to ours.  I bonded with a wonderful group of friends in Boston last year.  We began to feel guilty in a way, for having the fantastic support that comes from meeting one another. 


So, together, we resolved to facilitate gatherings for others, so that they might be as blessed as we have been.


Over the summer, we formed a non-profit Living LFS, which focuses on the way that we are living with a genetic predisposition to cancer.  I would point out that since we met last October, none of our eight board members have been 'medically quiet,' as I like to say, each dealing with chemo, surgery (or both) for themselves or a family member.  Despite facing major surgery in the form of double mastectomy and reconstruction, our secretary DeAnn worked tirelessly to file incorporation paperwork and got our application for non-profit status rolling.  It is an awful lot of paperwork, for the record.


We planned a mutant gathering in Portland, pulling it together in under two months.  DeAnn was ultimately unable to come, being only 10 days post-op, sporting several drains and dealing with a new diagnosis. I think that this truly illustrates what it means, Living LFS.  You work while you can, recognizing that cancer might interrupt and can rob you of the fruits of your labor.  While bitterly disappointed, we push through and carry on. 


This humbles me, inspires me, how these ladies work doggedly in service to others despite their own concerns.


At one point, there were troubles, worries and bumps in the road for me as we formed this organization. I wondered if this was what I was supposed to be doing-- devoting a significant portion of my time to a nonprofit dedicated to patient support, when I personally find so much comfort in research.  I am involved with a number of organizations.  I seek to find a balance between them.


I came to Portland looking for some breadcrumbs and found myself in a bakery--and I do not mean Voodoo Donuts, although those were also very good.  I do know that this is exactly what I am supposed to be doing.


Last week, I had reminded Brent that I would be going out of town.  "Oh, to your cancer conference..."  I argued that it wasn't a cancer conference, evidenced by the fact that I was going, and had never been sick. 


"You are just riding my cancer coattails, mom.  It is cancer by proxy."  I laughed rather hard at that...and throughout the weekend, laughed some more, comfortable with others who understood. This was not an angry gathering, nor one filled with despair.  We are determined, and hopeful. We laugh despite (or because of) our challenges.


We are a vibrant mutant community, and we were blessed to receive more offers of support for Living LFS, folks giving of their time and talent to help their fellow mutant via our infant organization. It was incredibly meaningful and I am very excited to be working together.


I often think that when you are given much, much is expected.  When you do good things with what you have been given, you are granted even more.  I count my blessings every single day.  Hearty laughter with my mutant friends over the weekend was one such blessing.  I will take a second serving of this, any day of the week.

'Mayberry' no more

Yesterday was Brent's 15th birthday.  I looked at him with bewilderment, like so many other mothers do as their children morph into adults, right under their nose.  I remembered his birthday three years earlier, as his hair fell out at the beginning of his osteosarcoma treatment and as I worried about our collective future.  Today, we have much to celebrate and so much to be grateful for.


Along with being the beginning of 'birthday season' in our house, September is pediatric cancer awareness month.  Add this to the beginning of school chaos and you can see that we have certainly been hopping. But in stark contrast to our fall of three years ago, it has been a really wonderful sort of busy. 


We are most grateful for the many instances of pediatric cancer being featured over the past month, such as the efforts of Hoda Kotb and the decision by the Cincinnati Bengals to support Devon Still and his young daughter who is currently battling advanced neuroblastoma.  Sharing these stories, featuring children in their cancer struggle is most meaningful, particularly when they also provide opportunities to help fund research.

To cite our own example, a week ago, Brent participated in the annual Flashes of Hope event.  He suited up in a tux and was paired up with James Jones of the Cleveland Cavaliers, walking the runway at Quicken Loans Arena along with other pediatric cancer survivors in front of over 1500 people.  He looked great, very confident in his stride and most outrageously, pulled out his phone and took a selfie on the catwalk. We hooted and howled from our seats.



We have long teased Brent for being Mayberry-like, in stark contrast to Lauren's outgoing "Hollywood" personality. It appears that we are going to have to amend our nickname...perhaps "Broadway" would be more fitting for Brent now, reflecting his affection for New York City.


The audience watched a video in which Alex and some other siblings describe the impact of cancer on their lives.  They may have been unaffected physically, but certainly have not been spared emotionally. 


http://vimeo.com/107935878


Then Dan and I watched the bidding, as the research dollars were collected.  I am unable to articulate how meaningful it is to witness the generosity of Dan Gilbert, of the Cavaliers, of Clevelanders in general.  I believe that the bad news too often gets the attention.  I was reminded again of how wonderfully kind people can be, whether we choose to focus on it or not.  


I volunteer at University Hospitals, and on Monday was asked by a woman how it was that I came to be involved.  I shared the basic outline of our story, of our four pediatric cancers.  She looked at me wide-eyed, fairly horrified, and asked,"How do you deal with it?"  I assured her that the kids were doing fine, melanoma treatment withstanding.  Really.  Truly.


But today, thinking about it, I know that the better answer lies in having faith.  I really, really struggle with the notion that it is all beyond my control, which I openly acknowledge.  But every morning, to bolster my faith, I read about the latest research, about all cancers, not knowing what cancer I might need to understand next.  I know that this may seem odd, but I find great comfort in the knowledge that scientists, physicians and researchers are all working hard to figure out a solution.  It reassures me, and helps me to cope. 


It gives me hope.


So, last week, in a magical evening, over one million dollars was raised via Flashes of Hope, dollars that will fund research, and by extension, helped to support my faith.  Because on this evening, I saw my son who lost his right pelvis to cancer, and who was supposed to lose that leg altogether, walk confidently across the stage, happy and healthy.  It was a celebration.  An affirmation.  A gift from God and an answer to countless prayers.


While I know that we are not necessarily done with cancer, we have been enormously blessed to get to this point.  I am both grateful and hopeful.


The gold ribbons have been exchanged for pink ones now, as breast cancer gets center stage for a month. But for us, every month is about pediatric cancer.




Many thanks to Flashes of Hope, Allison Clarke and the Cleveland Cavaliers for providing such a terrific night, supporting children with cancer as well as the researchers that are trying to cure them.