Social Distancing

For the two years since Brent died, I have been trying to find my place in the world.  More accurately, I have been trying to find myself, because I do not recognize this life.  It  is so radically different from what it once was.

For many years, I found my identity primarily as a mother, advocate and caregiver. I was a fixture in our local hospital, living there with Lauren and Brent during their various cancer treatments.  Beyond those walls, I was always looking to expand my scientific contacts because I never knew who I would next need to help my children.  I had become accustomed to the regular and repeated medical crises that would emerge.  I became somewhat numb to living desperately close to the edge, in ways that most parents could not possibly understand.

I wrote faithfully in our CaringBridge, giving medical updates and describing what I felt. These entries were always honest, but often incomplete.  I could not fully articulate just how hard some things were.  Nonetheless, our family received unbelievable support throughout these years in a multitude of ways, which often moved me to tears. I was comforted by the kindness of our extraordinary community.

Nights in the hospital were the worst.  A life of interminable waiting and medical problem solving seemed to stretch out in front of me (and indeed, this went on for many years) When sleep would not come to me, I would often read words of encouragement online and somehow feel less alone. The RamerNation made a life within these parameters, making the best of our less than ideal circumstances.  We thought creatively, tried to find opportunities to expand our children's narrow world and always sought the upside.

And then it all ended, most abruptly.


Since then, I have written only sporadically, retreated socially, and tried to find a place where I can be fully honest about the impact of this experience. But even among my closest mutant friends, I find that I maintain a certain distance.  They certainly understand the stress of cancer and repeated trauma.  They have all experienced loss, but fortunately within this small circle, not the loss of a child.  With LFS, losing a child is not a theoretical idea, but an insidious fear that crawls into your brain every time scans roll around.  So, it felt especially wrong to continuously wave the specter of that very real possibility in the face of friends that I love. We all try to protect each other.

I enrolled in graduate school, beginning a Masters in Public Health program.  I continued with my advocacy efforts to change systems that I knew should be fixed.  I expanded my Rolodex of contacts which had been focused on physicians and scientists to include policy makers, elected officials and like-minded advocates. But in between these efforts, I have been mostly quiet, and mostly alone. I have tried to heal the brokenness.

I have stilted conversations with people that I run into.  I find small talk at social gatherings to be a nightmare, because benign questions that are commonly asked of women my age require answers that are filled with cancer: How many children do you have?  Followed by, What do you do for work?  I have not crafted responses that are appropriate for a party yet, and navigating these interactions is exhausting. I often beg off, despite how socially engaged I once was.

I went to counselling for a time. I have looked for support groups for bereaved parents, but have not found a true fit.  I keep pushing forward, but I feel the punishment of Sisyphus, as each fresh day begins by picking up the same burden.

At the end of January, I attended a conference in DC about Expanded Access.  A speaker apologized during his presentation that he would need to leave in the middle of the panel discussion because there were some problems happening in China.  Sure enough, his phone alarm went off, and Dr. Anthony Fauci walked out.  I had no idea that I would change my facebook profile picture to his image, only two months later.

I watched this pandemic approach with the same apprehension that I felt during cancer. Alex had a cough when he came back from Ann Arbor and he went on to develop a fever of nearly 103. I dug through my zombie Apocalypse medical stash and found an open box of masks for him.  After advocating for him to be tested, I waited anxiously for his Covid results. People that we know are becoming infected, and some that we care about have died.  I described it to my mutant friends the other day:

"It is just so familiar...this feeling that I have. It is like a slow moving train and we are Penelope-tied to the tracks. Will it stop before we are crushed? I felt this way during Brent's osteo, wondering if his long surgical delay from chemo would result in lung mets...and during transplant when we had to wait holding our breath to see if it would work, and again with relapse before the DLI when Brent went without any white count for months--terrified that he would get infected....and during necrotizing fasciitis--those days in the ICU on a vent, and months later, when he didn't wake up for a week with the acute kidney injury, and with the acute respiratory distress he had earlier that admission....and less than a year later, when he was on a vent again...waiting for him to get well enough to receive those cells. It all has kind of gotten to me...all the waiting that I have done in my life for things that were beyond my control. So many times, it worked out. Things have stopped working out for me, it feels like. Just been a hard day today"

I am very glad to report that Alex has tested negative, because I have had my fill of ventilators and hospitals. It has been rather triggering for me, truth be told.  Furthermore, a positive result in Alex would carry huge implications for my mother who lives with us, and uses oxygen. Dan still goes to work at the VA hospital every day, so his risk- and ours- remains greater than those in true isolation, but for now, I can breathe a bit easier. (That was not intended as a snarky pun, but if you need one to break the stress, there you go.)

Mandated isolation for Covid has not had a profound an impact on me, since this had become my baseline, but it has greatly impacted my children, who have been forced to isolate far too often in their lives.  It feels cruel to deny them the opportunity to see friends, especially Lauren who was looking forward to a strong finish to her high school experience. She is now doing her final semester as a senior remotely.

Again, we have no choice.


I recognize that my experience with persistent fear, heightened uncertainty and unnatural loss, the things that made me feel so separate from most people, are becoming common to everyone in this post-Covid world. Speaking from across the street to neighbors while walking the dog, and seeing Facebook posts confirms that those who could never imagine living with such things, are doing just that.

So today, I feel that I will not be bringing the world down by sharing some of my feelings, because, most tragically, the world has begun to truly understand them.  The same extraordinary community that supported us for so long, and the people who said with honestly and compassion, "I cannot imagine!" have begun to experience a bit of the fear, had a taste of uncertainty, and is now in isolation.

I wish so very much that I could offer them even a fraction of the support and encouragement that we experienced for all those years.  We may need to be isolated but we don't have to be alone. Hang in there.

Stay home.  Stay safe.  Be well.

Much love,
Ann

Pediatric Cancer 101: Advice from the trenches

While, I know that most people do not prepare for this, and I am not thinking that there is a big market for a book titled “What to Expect When your Child has Cancer,” some might happen upon this early in diagnosis, or someone else, who has a bit more time to surf the net, might pass it along. I hope that it helps.  These are the lessons that I would offer at this point. I might offer “Advanced Pediatric Cancer” at a later date, but I really hope not.

1) Every cancer, and every cancer story, is different.

There are many roads that lead to the pediatric oncology floor (although most roads, fortunately, never go through that neck of the woods, with LFS, we actually take a freeway there.) How you got there is different from everyone else.  And once there, keep in mind that your child, her cancer, and how she responds to it, is unique.   This may be reassuring, or unsettling, depending upon what is going on around you. 

For example, while my son recovered from surgery for osteosarcoma at Memorial Sloan Kettering in NYC, he roomed with two different young men, both who were there for relapse osteosarcoma, which is a very tough road to be on.  We were there, just trying to heal from the surgery, in order to head back to Ohio and finish some punishing chemo.  The delay troubled me, and I feared that just like these young men, Brent’s cancer would metastasize.  Literally waking up every day to visions of my greatest worry was very difficult, and these were amazingly kind people.  But no matter; no one wants to peek behind that curtain, literally or figuratively, at that point in treatment.

I repeated to myself, like a rosary, “That is not Brent’s story.  The successes of osteosarcoma are not parading around this hospital for my emotional benefit.  They are out there, living their lives.  We will be as well.”  It helped some when I would remind myself of this.  But it was still incredibly hard.  

Easily, the most detested line in our home is “Everybody is different.  It all depends…”  Get used to that line, or some variation of it.  It has become a punch line for us at this point.  But, unfortunately, at a time when we most wanted something, anything, to count on, this was the best answer that the doctors could give.  And despite my great frustration, and the very palpable urge in the moment to shake the docs until their teeth rattled and an answer fell out, I do in fact appreciate their honesty.

Because everyone understands that the big questions like “Will this chemo work?” warrant this sort of response.  However, even seemingly simple questions, like “What side effects should we expect?”  “How long will his recovery take?” are truly unanswerable, as we soon learned.  Eventually, you begin to preface your questions with, “You likely cannot say but…”  When you start doing this without gritting your teeth and experiencing a rise in blood pressure, you know that you have become a hem/onc veteran.  Lesson one: learned.

2) Telling others

You will have to tell others.  In all likelihood, a lot of others.  We found Caringbridge to be an indispensible tool for communicating our journey with friends, family, and coworkers.  I do not work outside of the home, but Dan does, and as exhausting as it was being at the hospital, it was equally exhausting, emotionally speaking, for Dan to have to repeat the latest events over and over to his concerned coworkers.  Early on, I had many long, and repetitive conversations with understandably concerned friends, neighbors and family.

But, when I began to write online about what was going on, these conversations became shorter, less repetitive, and interestingly, we actually had more connection with people, many who might otherwise not have known our struggle.  With the most recent information available about how Brent was doing, the conversations would often start with a statement like  “I was glad to read that Brent enjoyed a good weekend home” or “I am sorry that you were in the ER again last night…”

There is fear, I believe, in asking about how things are going for someone in a health challenge, when you truly do not know.  So, this tool has been empowering for the asker, as well as for us.  Others know what kind of conversation that they are getting themselves into, and proceed accordingly.  And with the feedback we receive, we know that many people are praying for us, rooting for us, and traveling with us down this road.  This has been incredibly encouraging, given how long and bumpy the road has been.

When I initially had to tell people of our journey, it was a hard thing to hard to say.  Sometimes, the responses were hard to hear.  And once you child’s appearance is altered, however temporarily (i.e. hair loss); the questions from the public at large begin. 

At the grocery store, for example:

“I know exactly what you are feeling.  My grandfather had prostate cancer.”  Once I stopped screaming in my head about how the two are nothing alike, and incomparable at nearly every level (prognosis, age, treatment requirements, relationship…), I tried to keep in mind the spirit and intention of the comparison: That cancer is hard and really scary, and you are not alone. 

These are comments made by people, simply trying to relate to us.  Limb threatening osteosarcoma on your 11-year-old, on the surface, seems to be in a completely different league from a stranger’s grandpa’s aging prostate.  But if it is your prostate, or your people, the fear and the worry is the same.  I tried to focus on that.  Besides, if I only opened my mind and heart to others with limb threatening cancer on their child, well, I would have very few friends, and very little support.  I would be very lonely, indeed.

Another response, one that you might not expect, is the wide eyed look of a deer in headlights, right before the person in question disappears from your life altogether.  Fortunately for us, we have not had too terribly much of this, and this has been far outweighed by people rushing in to help our family, so the loss of such people who cannot handle this has not been so noticeable.

3) Information, internet and anecdotal evidence

You want to know the latest information about your child’s cancer. I completely get that.  You are sleepless and scared.  Rather than phoning a friend in the middle of the night, while your child is most hopefully asleep, but sleep eludes you, you decide to use the free hospital wifi to surf the net and do some research.

I have had dear friends advise me that “nothing good happens after midnight.”  While this would be cautionary advice for ordering another round of drinks at a bar, I submit that this would also be good general advice for internet research as well.  While the net offers clarification on information that maybe you couldn’t quite digest during the day, I cannot caution you enough about the angst that comes with reading medical information on the internet without live backup in the form of explanations from your child’s doctors. Be aware of the site you are on.  I would return to and reread the first section about “every cancer is different.”

Along the same lines, people will share their cancer stories with you, offer advice that they saw on television or got off of facebook, however remote or unrelated to your child or their cancer.  I would go back to the second section on “telling others.”  They want to relate.  What they say does not necessarily relate.  But you have to recognize and appreciate the effort.

Statistics.  I am in no position to speak about statistics, mostly because I have long ago rejected them.  Having a hideously rare genetic predisposition to cancer and 3 episodes of pediatric cancer in our nuclear family to date… well, stats cannot comfort us.  So, why should I let them frighten us?  Why should I pay any attention to them at all?  I had a friend once say of statistics, “Even if you child has 98% odds in his favor, it is meaningless to you if he is in the 2%.”  Her child had less than 10% odds, and for the record, is healthy over 5 years out. :)  Like they say of politics, it is all local.

4) What can I do?  How can I help?

Latch on to these words.  Hug the person who says them.  Embrace, and accept this, despite any reservations that you may have.

I had a very hard time with this notion of accepting help.  But for my other children, I knew we needed help.  They needed rides to practice. They needed distractions. They needed to know that they weren’t alone, even though we would be gone, sometimes for weeks at a time.  I had no idea how hard or how long this was going to be, or how tired I would become.  Otherwise, I would have gotten over my hang up about accepting help…much, much sooner.

Initially, the notion of having meals arrive at the house from friends and neighbors was hard, because I felt like this would be surrendering in a way, allowing cancer to change who we were.  I was the lady bringing the meals, not receiving them.  What did this mean if I was receiving them? 

But people wanted to help, and in a helpless situation, where they cannot fix what everyone most wants to be fixed, loved ones can ease your burdens in other areas.  They help with what can be helped.  They drove. They cooked. They took my kids on special dates.  They sent Legos and activities for Brent in hospital.  They sent cards.  And I know they prayed….because they told me about it.  I was comforted by all of this.

It is a long road, with long to do lists, most of which cannot be delegated.  Anything that can be, allow to be.  You have to prioritize your time, your energy.  Let someone else clean your house if they offer.  Or cut the grass.  Or cook, or change your oil.  Let them.  So that when you are home, you have the time and the energy to read your child a book, snuggle close on the couch and watch a movie together, whatever comforts and connects you.  I suspect that cleaning out the gutters is not included in ‘meaningful time’ at home…so if it is offered, accept.  Gratefully. 

And if you are reading this, and want to offer help to a family in need, try to do the thinking for the family.  Show up with your rake, or your snow shovel, or a casserole that could be frozen for another night. Take the kids to a movie, or the dog for a walk.  Whatever your talent (or capacity for the mundane) be specific in your offer, because while we received many very genuine offers of “whatever you need,” I couldn’t think enough to even see such a need (unless it was a raging fire right in front of me), much less match it with the person best suited for the task. I was barely capable of ‘yes’ or ‘no’ responses to specific help offered.

We received gift cards for gas, and pharmacy, and groceries.  Even with good insurance, things add up fast, in ways we didn’t imagine, far beyond me giving up my small business. We received notices of donations to cancer research, support of cancer organizations in our name.  These were a way for people who didn’t know us personally, to help support us nonetheless.  They were all very meaningful.

5) When it is over, it is not over

For so long, we counted the days until we finished chemo, then until Brent’s counts recovered…the magic day when we would leave oncology behind and we would get our life back.  I do not want to be discouraging, but, for the record, your life will never be the same, and the considerations of cancer continue long past chemo. I am not saying that you should not look forward to that day, but the change is not as dramatic as you might imagine, which can be disappointing. There are scans, and labs and worries and well, just stuff.  Brent is now 9 months out from chemo, but we have yet to go a week where I have not dealt with oncology for some repercussion of his treatment, and never mind the nonsense that we have for our ‘genetic concerns.’ 

Straight up cancer is a long road.  But it is much longer than they will tell you on the day that you get your treatment “roadmap.” I am in no way complaining about the long road, because the alternative is unimaginable.   And if you have ever been on a pediatric oncology floor, you are very grateful for the opportunity to be tired from a long hard slog.  However, I would recommend re-reading the section about accepting offers of help at this point.

You will get through this. It will be hard. And horrendously unpredictable, which is utterly exhausting.  But you will find support, probably from unexpected places. And you will never look at the world in quite the same way. These are the absolute truths I can offer.  Beyond that, as in all things in life, it is up to you.  I send you love, wishing you health, peaceful moments, and the wisdom found in the serenity prayer.