childhood cancer awareness

Perspective is the only everything

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Your hardest thing is your hardest thing.

I recently re-found a journal that I used in Spring 2008 when I was enrolled in a Leadership course. It was an elective in my doctoral program and one of the best academic experiences of my life. As part of the class, we were to journal- thoughts, reflections, quotes that stuck with us, etc. I kicked it old school and hand wrote all my thoughts.

My life in spring 2008 was very different from today. At the time, I had two healthy children. L was 2.5 and C was a nursing infant. S would bring the boys to my classroom every Tuesday night. S and L would go get dinner at the food court and I would sit in the hallway and feed C while my classmates debated leadership theory. I tried to leave the classroom door open and sit as close as possible so I could still hear what they were saying.

The final entry in my journal is dated April 26, 2008. The prompt was from our instructor Marilyn, “What is your heroic journey?” My response, written in pink, roller-ball pen was:

I don’t want to toot my own horn…but I really think that ‘this’ is my heroic journey. ‘This’ is being a full-time mom,PhD student, wife…w/ being a part-time professional. This is the hardest I’ve ever worked; the most reading & writing I’ve ever done; the most tired I’ve ever been; the most content and energized I’ve ever been.

I am my choices. I choose to be here. I choose to be a mom, wife, student…student, wife, mom…wife, mom, student. This is MY LIFE- OUR LIFE and I wouldn’t have it any other way. I’ve survived the crucible, learned from it, and moved on. Isn’t that a heroic journey??

Less than 8 months after that post, L was diagnosed with cancer. I was so naive, so blissfully unaware. At the time, though, that was the only perspective I had. At the time, what I wrote was my hardest thing. Re-reading that passage made me angry and sad. I wish that my hardest thing was being a poor, tired, nursing mother and student. I wish that my only concerns were sleeping through the night and how I would pay for next semester’s tuition.

Cancer stole L’s innocence. And mine, too.

I see friends, mothers, bloggers post (complain) on Twitter and Facebook about their kids. Broken arms, the flu, stomach viruses, ear infections. My tolerance for these minor (to me) complaints is very, very low. I read these posts and I want to scream, to shake people into awareness, to make people care. In my head, I am not gracious. I am mean, impatient, annoyed.

I try to not act on those feelings and I am not proud of them. But, I do feel them. All of what happened to L and to us is so wrong, so unnatural, and so unfair. But, the world kept spinning. Friends kept living their lives. I do not want them to experience what I did and I would do everything we were forced to do again if I knew that it would save L. I just wish that I didn’t know what I know.

Sometimes, in the deep, dark places…I think that the perspective I gained from L’s diagnosis, treatment, and subsequent long-term care makes me better than others. God, that sounds arrogant. I know this is not true. Before L was diagnosed, my hardest thing was negotiating school and motherhood. For some people, their hardest thing might be a child’s surgery to get ear tubes or an appendectomy. Cognitively, I get it. I am not any better than anyone else. Just different.

My hardest thing was my hardest thing. (And, what if L’s cancer diagnosis turns out not to be the hardest thing?)

While L was in treatment, friends of our went through divorce proceedings. When they told us about it they said something to the effect of, “I feel bad even saying this to you. I can’t imagine going through cancer with your kid.” To which we said, “I can’t imagine getting divorced!”

Your hardest thing is your hardest thing. It’s not a contest. It’s not a race. Part of leaning in to this “new normal” is how to deal with all this stuff. All this messy, icky stuff.

Perspective is everything. It’s really the only thing. I pray that God continues to give me grace to see.

First Day of School, in Three Parts

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2009

When L was in treatment, I remember being viscerally angry at all of my facebook friends who were posting pictures of their smiling 4 year olds off to their first day of pre-school. L was being denied that opportunity because he was fighting for his life. It seems silly and petty now. Pre-school isn’t really school. Not really. And, my time would have been better spent sleeping, or studying, or paying attention to my marriage, or to C, who was still just a baby then. I wasn’t really mad at my friends or their kids. I was just jealous and angry at cancer and scared. So, so scared. That’s the thing with fear and grief. They take you outside yourself and make you feel unnatural things.

2011

I wrote this post about the First Day of School. L was finally cancer-free, off-treatment, and we were dipping our toes into the “off-treatment” life. Well, now I can say dipping our toes. I think at the time it was more like a no-holds-barred-white-knuckle-squeeze-every-stinking-thing-I-can-out-of-life-roller-coaster-ride. I was so afraid that the first days of school would be stolen from us, that I probably over exaggerated their meaning, to me and to L. And certainly to C. I over exaggerated everything. At the time, it was the only way I knew how to get back to living. “This could be the only chance we get to do this. Ever. Quick! Where’s my camera?”

Looking back at that piece I wrote, I can see and smell the survivor guilt dripping from every paragraph like spilled honey. Again, fear and grief make you do funny things. I wrote that post in the living room of our house and I remember very clearly thinking about the Mommas who I would soon meet at the 2011 shave. I felt guilty. My son survived. My kid lived. My kid got to go to the first day of school. My kids would come with us to Washington, DC and my survivor would be on stage with me taking the first swipe at my curly hair.

Meeting those Mommas in person, made it worse for me personally. I feel bad saying that, but it’s true. First, I was face-to-face with women (and their kiddos) who could’ve been me. We are (still are, really) just one spot on his lungs away from relapse or one bad blood draw away from a secondary cancer. I knew that then. I know it now. I will never not know it. Second, meeting the Mommas and shaving in 2011 made me feel incredibly guilty. Like I wasn’t good enough, like I wasn’t gracious enough. That I needed to have worked harder for L’s survivorship, or that I owed all these women and their dead children something because my kid made it and theirs didn’t.

NONE of the Mommas made me feel that way. I made myself feel that way. Survivor guilt and PTSD are real. And they manifest themselves in some really effed up ways. In fact, the bereaved Mommas whom I have come to know and love are kind, compassionate, fiesty, determined, and focused advocates for ALL kids. They are genuinely GLAD for L and our family that he survived. It is what they wanted for their own children and didn’t get. No one knows why. We will never know why. That is the rub. Some kids make it. Some don’t. These women know grief and they will do almost anything to make sure that other kids and their mothers don’t also walk that path. I pray that in the face of such loss I would be so gracious. I don’t think so though.

I didn’t write about the first day of school in 2012 or 2013. I am glad for that. I think I needed to NOT write about it. I needed to just let them happen and not be heavy with so many expectations.

2014

The boys’ first day of school was only last week. Seems like longer. Time is like that. The days are long, but weeks fly by. Last Tuesday dawned sunny and full of energy. This year was great because we were not new. We knew the school, lots of the families, and teachers. The principal knows all of us by name and stands in front of the building and greets everyone as they walk or drive up. I love our neighborhood school and feel very fortunate to live where we do. When we walked inside, I felt excitement and relief. Not relief that L got to experience another “first day of school” but relief that I didn’t feel relief. I was thrilled for my boys. I was grateful and proud. I think the number of pictures I take of an experience is inversely related to how much I enjoyed it. On vacation, I took 20 pictures max. It was one of the best weeks I had all summer. On the first day of school, I took 14 photos. That’s it. And my favorite photos aren’t the staged ones I made the boys take on the front step. My favorites are the goofy ones I took when they thought I wasn’t looking.

September is national childhood cancer awareness month. Around the world, kids and their parents are fighting like hell to get their “first day of school.” Every single one of them deserves it.

The Limbo of Maybe

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Last week L came to us and told us that he had a painful bump on his jaw. It was a hard, pea-sized bump on the right side of his face. My first thought was “It’s back. It’s back. He’s relapsed. We have to do it all again.” This is always my first thought when something happens with him. It will always be my first thought.

Maybe it’s nothing. It’s probably nothing. But given L’s history, we no longer have the luxury of nothing. We live in the maybes. Maybe it’s back. Maybe it’s a secondary cancer. And so, it must be checked out.

I called our pediatrician and requested an appointment. Our doctor was on vacation. Oof. Our back-up doctor was also on vacation. Double oof. If I wanted someone to see him that week, it would have to be with a new person. Great. I get to tell the whole story to a stranger and answer questions I have answered 1,000 times before. I get to explain, again, why it is so important that s/he examines him thoroughly, that s/he looks everywhere, for everything and if there are concerns they need to tell me. Now. If I wanted L to be seen that week, the new doc was my only option. I made the appointment.

Then, later that morning, in the back of my mind I remembered that our babysitter took the boys to their dentist appointments in July (best babysitter ever) and that L had a cavity that needed to be filled. It’s like in the cartoons when the word bubbles are floating around people’s heads. And he has a huge canker sore. On the same side as the pea-sized bump. I call the dentist. What side is that cavity on? (Poor dental health is just one of the side effects of all the chemo he got, but that’s minor compared to the alternatives, right?) And now my mind is in overdrive. Spinning with possibilities, holding on to the prayer that it’s not cancer, again. YES! The cavity is on the same side as the bump and the canker sore. So, odds are it’s just a swollen lymph node or an abscessed tooth. Wahoo! I’ll take it.

 

It's JUST an abscessed tooth!

It’s JUST an abscessed tooth!

We go to the dentist a few days later. Thank goodness for our dentist. I really like him. He is thorough and kind. He is also a parent and he knows L’s history, so he gives us a lot of latitude. He lasers the canker sore (very cool, didn’t know they could do that. And we got to wear sunglasses while he was cauterizing L’s gums) but he thinks the bump should be checked out. Our eyes meet over L’s bony body that barely fills the reclining dentist’s chair. His mouth is covered by his mask so I can’t see his lips moving. But my eyes are searching, pleading and he knows what I am really asking. “I think it’s nothing. Odds are it’s the lymph node doing it’s job. But, this is not my area of expertise and given his history, I think you should keep the doctor’s appointment and get it checked out.” My stomach drops to the floor. Given. his. history.

We go to the new pediatrician the next day. She is ah-mazing (thank goodness!). Not sure if the triage nurse who made the appointment told her about L’s history, but the Dr. had read his chart. I didn’t have to tell the story, again. She knew most of it. And, she was very, very thorough. “I think it’s nothing. It’s not hot, red, he doesn’t have a fever. If you want to do bloodwork we can, but I don’t think it’s necessary. If it gets bigger and/or doesn’t resolve in two weeks, come back.”

wwwwhhhhhheeeeewwwwww. How does the world not hear the air decompressing from the balloon that has filled my chest for 48 hours?

Scare over. It’s not cancer. It’s a lymph node. He’s fine. (Almost a week later now and the bump is almost gone.)

Maudlin? Dramatic? Over-the-top? Yes. Yes. And Yes. And, completely exhausting. But that doesn’t make it any less real.

This is our life. We live in the limbo of maybe. Equally ripe with potential and dread, freedom and fear, reality and worst-case scenario.

This spring I read Lily Koppel’s book The Astronaut Wives Club about the Mercury and Apollo astronauts and the Space Race. Buzz Aldrin was chosen to be part of the crew that would make the first moon landing. In speaking about the months leading up to the actual launch, his first wife Joan said, “It was normalcy tinged with hysteria.” Yes! This! This is what I feel like as parent to a childhood cancer survivor. It is vigilance and paranoia. On the outside, everything is fine. Normal. He survived. We survived. We are…unscathed. But just beneath the surface is maybe.

Some days are better than others. Some minutes are easier than others. Most of the time, the duration of my freakouts is short. But, other days, not so much. I know too much. In the week that I waited to post this, a fellow Rhabdo mother posted that her daughter relapsed. The cancer is everywhere. The odds are not in her favor. Some of my 46 Mommas friends have children who are still in treatment, while trying to go to school. They have missed the first day of school because of fevers and low counts. Others have orthotic leg braces ordered & ready to go, but cannot pay for them because insurance won’t cover it.

It’s never over. The maybe lingers.

As September approaches and the childhood cancer community asks for your support, I hope that you will be moved. Moved to do something. Paint your nails gold, make your facebook profile picture a gold ribbon, donate to a childhood cancer charity, make a meal for a family, pray for families who are grieving. We need you. Help us turn “maybes” into true “nothings.”

Thank you.

Gold Ribbon

September is Childhood Cancer Awareness Month