Tomorrow

Tomorrow is December 12th. Diagnosis Day. Dx day. D day. THE day.

Usually this time of year, I am anxious. Tight. Angry. Yet, for the first time in eight years, I feel….”normal.” I have prayed for this day. Waited for this day to finally come. It did and I barely noticed it. It snuck up on me. People always say that don’t they? “Enjoy this time, it goes so fast” or “time heals all wounds” blah blah blah.

The class I teach is on Monday nights. In August I wrote down all 15 weeks, 15 Mondays, and posted them on our kitchen bulletin board. December 12th is a Monday. It’s been staring at me, in my own handwriting, since August.

And I’m fine. We’re all fine. And I finally mean it. I’m not just saying that to get people to stop asking me about it.

I bumped into D day last week. I was standing in the hallway outside my classroom waiting for the class before us to finish up, writing a note to remind my students about their final paper, due December 12th. I wrote out December 12th, looked at it and remembered. Not that I ever really forgot, it’s more like I was reminded. This year the waiting has been less..heavy. I wrote out 12/12 and had to immediately text Sean: “OMG! December 12th is next week. Can you believe it?” I was so excited that I had forgotten!

It happened again today. We were grocery shopping and in the orange juice section the boys started counting out how many more days until school break, until Santa comes, until NJ vacation. They were off because today is December 11th, not the 10th. I said out loud, “Today is December 11th. Huh.” Sean heard me, caught my eye, and said, “I know what you mean.”

I am not sure why this year is different. I’ve been keeping a gratitude journal since October 10th. Every day I write three or four things that made me happy, or that I’m grateful for. I’ve been praying more. I’ve been more open in asking others to pray for me. I went back to yoga. I am learning to breathe more fully.

Who knows if any of these things have contributed to my healing. Maybe none. Maybe all. Regardless, I’m going to keep doing them. I’m also going to stop looking for the perfect combination or magic formula. That’s where I get into trouble- I dissect every little thing, event, conversation. I weigh and measure it. I spin my wheels trying to make things work, instead of just letting them work.

We go to church every Sunday; it’s one of the things that I’ve always done and will keep doing. I confess (ha!) though that sometimes it doesn’t always do it for me. Sometimes church is one of the things that I try to make work. The choir picks random hymns that are too high for me to sing, there’s a screaming kid behind me, or the readings are for someone else.

Not today. Today, church worked. It was as if God was speaking directly to me. It was just me and Her today and it worked. Words and phrases lept out at me.

“Sorrow and mourning will flee….meet the Lord with gladness and joy” (Isaiah).

“Be patient. Make your hearts firm” (James).

Today is the third Sunday of Advent, Gaudete Sunday. Gaudete means “Rejoice” and today reminds us to take a step back and recall our joy. Gaudete is a light-hearted break in the midst of the pregnant waiting of Advent. Our priest’s homily challenged and encouraged me to be hopeful. “Hope is a desire for something good that is difficult to attain.” Whoa. Slow down there, Father. You’re speaking right to me and it’s making me kinda squirmy.

For years I have been desiring healing, to feel…free, loose. That is something good that sure as hell has been difficult to attain. Sometimes I felt distant from God. That S/He wasn’t hearing my prayers. Maybe I wasn’t praying hard enough, or right enough or even just, enough. Why was God taking so damn long?

Of course today’s readings were about hope and rejoicing. And of course, today was Gaudete Sunday, the day before D-day. Because that is how God works. That is God’s timing. I’m learning to trust that God is always with me. S/He has been working on my heart, helping me to be hopeful. It just took me a little longer to catch on. It took me so damn long!

Today I rejoice. I will continue to train myself to choose hope. Because I get a tomorrow. Luke gets a tomorrow. Even if tomorrow is D-day. Even if tomorrow is a hard day. I still get it. It’s mine to use or waste. It’s mine to embrace or push against. I rejoice! I choose hope!

 

Anger makes people uncomfortable

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.