Childhood Cancer Awareness

Anger makes people uncomfortable

Posted by

3

There are five stages or parts of the grief process: Denial and isolation; anger; bargaining; depression; and acceptance. You can be in multiple “stages” at the same time and you can cycle in and out of stages. Meaning, it is possible to go through a stage and then go back to it. Over and over again.

A dear, dear friend of mine posted a graphic about the lack of funding for childhood cancer research on her facebook wall in September, which is national childhood cancer awareness month. She did this on her own. I commented and said thanks. A friend of hers (I do not know him, never met him) commented on the post as well and then compared childhood cancer funding with breast cancer funding. I wrote back and said it IS low when you consider that ALL 13 types of childhood cancers get 4% of the NCI’s total budget….blah blah. Two days later a different graphic came out. I shared it on my friend’s wall and said she should share it with her friend. Apparently, that was attacking him. I still don’t see that. But, he felt attacked and it happened on her wall so I apologized. I even wrote my version of a mea culpa post about it. You can read that here.

Since then, she and I have gone back and forth about my anger. She is a very good friend of mine and I appreciate her bringing all of this to my attention. I really had no idea how I was being perceived by others. I am doing what I do, which is try to raise awareness and advocate for children, who cannot speak for themselves.

She finally asked me what I was so angry about. Here’s my list:

  1. My three year old son almost died. (anger)
  2. He was diagnosed with stage 4 cancer in 2008. His team of oncologists told us once, “we will take him to the absolute brink and then bring him back.” They were right. The things that were done to my son’s little body are unspeakable. (anger)
  3. I wish that I had seen his tumor sooner. The cancer might have been stage 1-3, thus decreasing his treatment time and increasing his long-term survival rates. (bargaining) I am his mother. I am supposed to keep him safe.
  4. I am angry that I didn’t care about childhood cancer before my son was diagnosed. It’s the #1 disease killer of children. #1.
  5. I am mad a big pharma for putting money and profit ahead of patients’ lives.
  6. I am angry that Americans care more about boobs and penises than they do about kids.
  7. I am angry that the general public thinks childhood cancer is rare.
  8. I am angry that the general public thinks there is an 80% cure rate.
  9. The treatments that were used to save my son, could end up causing significant long-term damage (heart problems, growth problems, cognitive issues, puberty issues) and/or cause secondary cancers (skin cancer and/or leukemia).
  10. My son lived and others do not. I am angry that I have survivor guilt. I am angry that I am angry because I should be grateful and compassionate. If I keep advocating and raising money and awareness then fewer kids will get cancer and die (bargaining again).

Anger makes people uncomfortable. They equate it with violence. Which is sometimes true, but not always. The hard part about being angry with cancer is that there is nothing and no one to take it out on. Cancer is nebulous. There is no perpetrator that can be brought to trial. It is just out there. And those of us who have been forced to deal with it are left…

floating.

When I think of anger, I think of that scene in A few good men when Jack Nicholson says, “In places you don’t talk about at parties, you want me on that wall, you need me on that wall.” Of course people get angry. We all do. We are all humans. But, there are very few spaces and places where it is ok and acceptable to express your anger. It makes people uncomfortable. I get it.

I wish I weren’t angry. I wish that my son didn’t suffer the way he did. I wish. I wish. I wish. I can’t go back. I know this. And I am trying to move forward. The stages of grief are real. So is PTSD. There are triggers everywhere. Even the amazing Leah Still and her dad Devon’s heroic efforts to raise awareness and money are triggers. My son was once completely bald, too. Four years ago was both a lifetime and just yesterday.

Sometimes, the release of lashing out or posting snark is easier than the truth. But, that release is only temporary.

The truth is, I am not angry. I am scared. I am absolutely terrified that my son will die.

I have the right to be angry. And I am right to be angry. What happened to my son and our family was horrible, wrong, unfair, scary. What I am learning though is that what happened to us doesn’t give me the right to be self-righteous. I am working on that last elusive stage: acceptance.

Perspective is the only everything

Posted by

1

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

Posted by

0

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.