So I failed. Failed hard.
I spent a good two hours crying in my closet last night. I wasn’t exactly hiding. About an hour in I had guests. A pity party in my closet.
I tried to push forward.
I really tried, but I’m down.
You may think I’m an idiot for being down. Didn’t she see this coming?
I’m not an idiot. I am not.
I had my reasonings for being so positive. I am very well aware my child has a serious cancer, but I was rationally optimistic. Going into the scans I knew that around 80% of bone cancers respond to chemotherapy. I also knew that his tumor was responding to chemo. Remember the flicking?! It was working. The chemo significantly shrunk the tumor prior to surgery so in my head I bumped it up to 90%. I knew of kids with less results that went NED. The chemo had to be working on the bones. The cells are the same so if the soft tissue was responding, it stood to reason that the bone cells would too.
I swear I’m not delusional.
But even 90% wasn’t enough for me. I was not settling for anything less than 100%. Not even 99.9% would do. Jacob had to be okay. There is no other choice. And that’s when I started looking at intention exercises. I felt that work would get me to 100% certainty. I would only accept certainty.
I walked into the scans with close to 100% certainty. So when they came back so negative. I was lost. I didn’t understand. I knew they could not be NED, but not responsive was never a thought. Never. I never saw that path of the countless roads that diverged. It was hidden, but still there.
I feel betrayed. Betrayed by math. Betrayed by the world. And with that experience it took any coping tool I had. Now math is not on my side. They spin a daunting narrative. There is no 80% here. Not even close. And I’ve lost religion.
So I’m struggling. Reality struggling. I have 2 months of scan anxiety ahead. 2 months to know if Jacob will respond to immunotherapy. Can you imagine waiting 2 months like this?! And these results are SERIOUS. He needs to respond.
And unlike last scan round, instead of being positive and see beauty in the world, all I think about is the negative.
Do you blame me? If one thing I’ve learned is there are paths you can’t even see. Ones that are hidden from the naked eye. You can’t ignore anything. You may have 99% odds, but there is that 1% lurking. And with my luck, it is lurking on my tail.
For the first time I’m considering the worst and its hard to wake up. It’s hard to function. You may see me. You may see us. We will smile, but know its just a fake. There is nothing inside. Nothing.
And I’m fucking jealous.
Of all of you.
All of you.
Even my closest friends I’m jealous of. And I’m ashamed by that. I’m ashamed that I want your life. So I can’t see you and I will limit it if I can.
All of you going to parties with your children or out to dinner. I’ll even take running an errand. That sounds lovely.
When we went to Hudson Yards, I just felt numb. Old me would have liked to look at the windows and fashion trends. Look at the art. Look at the people, but I had no interest. If anything it all looked the same. Like I was seeing it all in black and white. Just a haze. The only thing in color was Jacob and still all I kept thinking was “how many days will he have like this?” Instead of enjoying it.
And all the staring.
The woman mouthing “God bless you” as we walk by. I see the spectacle. I see that you pity me. Well you should. You strangers don’t even know half of it.
And here I am trying to do my homework. But all I can think of is the pain.
I want to write about how fucked up the pharmaceutical companies are. I want to share the fact that we spent HOURS on the phone getting the ingredients from the pharmaceutical companies. The shots we need to give Jacob and guess what? FedEx lost them. Yep. That is what they told us. When we informed them that they had life saving medicine for our son who has cancer, they informed us that they are putting in a “claim.” Well thank you. Does a claim solve the issue that he needs this drug tomorrow?!! And the blame doesn’t solely rest of FedEx, the fact that we are just getting this package (cutting it so close) is an issue with the pharmaceutical company.
They don’t care. They only care about money.
Luckily of the two ingredients, this one the hospital was able to get for us. If it was the other package, Jacob’s health would be in jeopardy.
Just another day in paradise.
And I’m supposed to write today about a gender revel party. HOW?
All I want to write about is Steve’s migraines. How he suffers from a rare migraine disorder and how he is in one of the cycles. How he sits on an oxygen tank last night. How I worry about him too.
I have no interest in writing about my homework nor am I capable of doing it. I can only write what is happening. I write this as Jacob spikes a fever and has fallen asleep on the couch. I write this after Steve gave him an injection this morning. One of many more to come. I write this as I sit frozen in time just wishing the days to pass, but also wishing them to stop, unsure what to wish for. Paralyzed in wishes even.
Do I want time to stand still or move forward? Do I want to know?
So this is what depression looks like. It is remarkable really. You can walk. You can talk. You can wake up every 3 hours and dole medication. You can snuggle your children. You can do everything. It’s not debilitating as I thought it would be. It’s just a different lens.