My heart is currently broken. This is one of those breaks you don’t heal from. It’s humanly impossible. My worst nightmare is happening and there’s literally nothing I can do to stop it. I’ve held it together for weeks. Today, today I’m finally a sobbing mess.
Zak - my almost 24 year old son - has a tumor. It’s large. It’s aggressive. It’s angry. The only positive is it’s benign. However, it doesn’t change the fact it’s aggressive. It doesn’t change the fact that removing this tumor will cause more tumors to likely grow. More of the same tumors that will be just as aggressive.
They found it 3 weeks ago when he finally went to the ER due to extreme pain. We went to Mayo last week. We got the biopsy results back. It’s a Desmoid Tumor. A rare, but aggressive tumor. A common tumor with his genetic disease. However, nobody in his family has had a Desmoid so we thought it would be fine. We weren’t watching for them. Now it’s here and it isn’t good.
Currently they think it mainly involves the abdominal wall. She thinks chemotherapy to hopefully shrink the tumor and then surgery to remove it is probably best. However, we’re waiting for the oncologist and surgeon to review that we’re just added to our Mayo team. I keep telling myself we’re lucky we can go to one of the best hospitals in the world and have the best providers. Yet, I don’t feel very lucky currently.
I’ve tried to stay off Google. I don’t need to read it. I’m in a support group for his disease. A mom posted about sound wave therapy yesterday for Desmoids. Her son also has a large one like Zak’s. Then I kept reading. His twin brother died last year from the same disease, from a Desmoid, at 26 years old.
I hadn’t let myself think my son could die and probably will die. I’ve known since his diagnosis he’d probably die before me. That some day I would have to bury my child. I thought I had time though. I thought getting his colon out would buy us 20 years. Not 2 years. I thought maybe I’d bury my child when he was 50. Not in his 20s. This isn’t supposed to happen. It is not okay. Seeing this mom losing her son from the same disease - her son that’s only 2 years older than my son - it’s broken me. I can’t imagine watching my other twin face the same demon just months later. My heart is crushed for her too. To think of all the parents stuck in a club they never wanted to be part of. It isn’t fair.
I wish I’d of never read her post. Never realized how deadly this really could be. I knew it wasn’t good. Yet, I didn’t know it was this bad. I didn’t realize we were beginning another fight for his life. I heard the word benign and thought we’d be fine. He’d be fine. Facing that he won’t be. I’m gutted.
I think of his Make A Wish. When I was told he qualified for that, that was the first time I realized he had a terminal illness. That it wasn’t if he died, but when he dies. I really thought I had 20 more years with him though. Even with his uncle dying less than a year ago from this same disease in his late 30s… I still believed we could make it to 50. Now I see he’ll be damn lucky to make it to 30.
I just hadn’t accepted it until today. Now I’m laying in bed sobbing while the baby naps. Sobbing. I can actually feel the brokenness of my heart. It physically hurts. The thought of losing him. The thought of the battle he’s about to begin. Knowing he’s going to be sick and miserable and in so much pain. It hurts so deeply. I wish I could fix it. I wish I could take it all away. I’d do anything to heal him. Pay anything.
Sometimes I think if I’d of known his dad had this disease I’d of never gotten pregnant. I’d of take more precautions to not have children. That means I wouldn’t have my son though. Do I really wish I’d of never given him life? I don’t know - I feel like I’m selfish wanting him here when he’s spent a decade suffering due to genetics. Then I feel guilty. I just don’t think I gave him a great enough life to make the misery worth it. I should have been better. I should have done better. I really don’t know. It’s like the song… I could have missed the pain but I’d of had to miss the dance… I’d of missed the great parts. But he’d of never experienced a pain like this. I really don’t know and I need to really not think about it.
I’m going to finish crying. Then I’m going to suck it up and return to being strong. Return to my brave face. Someone told me the other day she didn’t know how I do it, she’d be a mess. How do I do it? I live in denial I guess. I just focus on what needs to be done and not on the negatives or pain of it all. That’s what has got me this far. Today is the first day I let myself feel and acknowledge how bad it is. And it’s the last day. I can’t dwell on the inevitable outcome but instead must focus on how to beat this and give him the best life possible until it isn’t possible anymore.
We’re just in the hurry up and wait phase I guess. He needs an MRI and a specific pelvic MRI. We’re waiting to get word on when the oncologist appointment is. Then I guess he’ll likely begin chemo and we’ll begin praying it works. Praying it shrinks it. Praying it can be surgically removed. Praying more tumors don’t replace this one. Praying he can live a decent life.
I really have no idea. Just taking it one day at a time.
I’ve got plenty to be sad about lately. Things I was going to write about. More sadness from Nick. Juggling the baby. Work. My house issues. Yet, crying over a boy sounds stupid when I realize I may have to bury my child far sooner than I expected. Then a boy heartache feels like nothing. This depression feels mild compared to the depression I feel when I think of that.
I can’t lose him. I really can’t. You never expect to ever bury a child. They aren’t supposed to go first. This isn’t okay. It’s not alright. In no version of the world will it ever be alright.
That’s that. Now I need to quit crying. Suck it up. Be strong.
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