June 22

*Warning: Today’s post has some fairly offensive swears. I’m not sorry.

Today is my son’s 13th birthday. I gently kissed him before taking the dogs out for a walk – hoping to not wake him – because I am praying that he’s dreaming of something way more amazing than his current reality.

I am so fucking sick of cancer overshadowing every single day. Every. Single. Milestone.

I know. I sound defeated. I feel defeated.

I’ve been throwing myself quite a pity party lately. One month ago I was saying “Well, after this week of scans we’ll know what we can plan for the summer.” And, of course, after learning of the spot, I was put on hold for another month. Then, my sunshiny attitude said, “Well, after THIS set of scans we’ll know what we can plan for the summer.” And on Wednesday, Dr. Macy said she felt pretty good about where he was (she said 95% sure that this spot was nothing) but still wanted to do a different scan to be 100% positive. So, on Thursday, we did the scan. And it didn’t give us the extra 5% we were hoping for. In fact, it changed the game. Two spots. The talk of doing a biopsy. The talk of treatment options.

“So, are we calling this a relapse?” I asked with one hand clutching my thigh as tight as I could – hoping the physical pain would keep me in the present – as the other hand gently caressed my stunned son’s shoulder.

Dr. Macy said no. Not yet.

Yet.

Goddammit.

All the adrenaline that I had been storing up for the second scan week, I’d let go of 95% of it when Dr. Macy said she was 95% sure it was nothing. Then, it all came flooding back at once. It was like slamming on the brakes to avoid rear ending a car, but instead of that feeling dissipating after a few minutes, I’ve managed to maintain it for the past three days. It’s highly uncomfortable. I’m trying to focus on making this an awesome weekend for Ben. This is supposed to be a major milestone! He’s becoming a young man! Unfortunately, he’s had to be more of a man in his 13 years than any other man I’ve ever known. I could go off on a tangent here and express that Ben is more of a man than ANY OTHER MAN I’ve ever met. But that’s anger best used for another time.

So, as I turned my head away from the conversation to look out the window behind me, I caught sight of my hand still caressing Ben’s shoulder. His thumb and forefinger were pressed against the bridge of his nose. Men don’t cry. At least that’s what he’s heard from others. I can only imagine the battle between letting the tears flow and hearing the echoey voices telling him to “Man UP!” I don’t know this, of course, but he didn’t want anyone to see those emotions. The emotions of a potential relapse. The tears of fear. I saw two small wet spots spreading on his shirt like a gunshot wound. I weakly stated to him that it was okay to cry. Only then did I feel the silent shake of his small frame as more tears fell despite the barrier he’d created with his fingers. I looked out the window hoping to suppress my own. Mom isn’t supposed to cry either.

Unfortunately, I’ve worn my heart on my sleeve throughout this entire 10 year process. He knows that I’ve been terrified on this journey. He knows I don’t want to lose him. He knows that if he leaves then my world will be shattered. (Don’t you DARE respond to this post with “at least he’d be in a better place” or any nonsense about “Angel wings.”) Sometimes I think he fights so hard because he feels accountable for the rest of us. I don’t want to add to his stress, but I’m pretty confident this child feels responsible for all we’ve been through. He knows that we’re financially fucked because of his treatment. He knows we only have “fun” because other people generously give. He knows that we can’t pay for the wonderful opportunities he receives. And he feels responsible. I had to ask for people to help us get his birthday present. And that makes me feel like shit. Especially when others bluntly remind me that I can’t do it for myself – for my own children.

We’re being held hostage again. So I’ll take baby steps to the shower. Baby steps to wash my hair. Baby steps to get through this day of celebration. Knowing that each baby step will take us closer to the bullshit that cancer continues to throw our way. Happy Birthday, Ben. Enjoy that cake now. You have a biopsy in the morning and can’t eat after 7 pm.

Actually, that last statement was for dramatic purposes (did I really need to add more drama?!) He was supposed to have a biopsy tomorrow, but for now we’re waiting for his surgeon to get back in town – the surgeon originally consulted doesn’t think she can get to the spot because of there being too many blood vessels surrounding it. More on that tomorrow, I guess.

I will say, however, that if Ben has relapsed, I’m taking him to Hawaii as soon as possible because that is his greatest wish right now. And I’m going to ask all of you to pay for it. And I’m not going to feel guilty about it. In fact, even if he hasn’t relapsed, I’m still going to take him to Hawaii as soon as possible because he deserves some freaking JOY in his life. I didn’t hold a fundraiser the last time he relapsed because of the overwhelming guilt I have surrounding asking people for help.

But screw it.

That’s what friends are for, right?

 

 

 

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37 Comments

  1. The wonderful comments on your posts are a tribute to you and your family and a rally cry against how much cancer sucks. Sending the three of you lots of prayers and love on Ben’s birthday.

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  2. Oh my Sarah…I’m so sorry. I feel every ounce of your pain right now. The angst in waiting for an answer….and not really wanting it at the same time. I feel it like it were yesterday. So sorry for all that your little man is going through. Happy birthday to him and praying for good scan results. I’d go to Hawaii with you all and my kids and pay for all of it if I could afford it. Love you… You are not alone..and.,,I’m totally with you on the better place and angel wings comments. Xoxo

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  3. Oh my Sarah…I’m so sorry. I feel every ounce of your pain right now. The angst in waiting for an answer….and not really wanting it at the same time. I feel it like it were yesterday. So sorry for all that your little man is going through. Happy birthday to him and praying for good scan results. I’d go to Hawaii with you all and my kids and pay for all of it if I could afford it. Love you… You are not alone..and.,,I’m totally with you on the better place and angel wings comments. Xoxo

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  4. Never feel bad about asking us for help. I am blessed to have 2 healthy grown sons and feel your pain in your posts. I pray for you and Ben everyday and was VERY happy to be able to chip in for his birthday and will help with Hawaii. He deserves every joy life has to offer and is blesed to have you for a mom. Hugs to you

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  5. You’re damn right that’s what friends are for and I’ll be the first to set up a gofundme site or whatever else you need done. I’m so, so sorry you’re having to even contemplate cancer rearing it’s head again and I absolutely hate that sweet, beautiful Ben has to go through anything else. Happy Birthday, beautiful boy. I hope it was an amazing day.

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  6. You have all of us backing you up, Sarah and Ben, with love, and prayers, and we will keep fighting. Because we need to, and we don’t think of anything else. You may feel defeated, but we are here to “get your back”, to encourage you, and you have two beautiful children that will lift you up and push you forward as you will to them. We are your friends, your family, and we know that you are strong, and so, very much full of love.

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  7. Sarah, I wish I could say something that didn’t sound so inadequate. I was thinking about Ben and the other still brave 100 kids today. He deserves a trip to Hawaii and I wish I had money to donate to help, he’s been so incredibly strong, stronger than many men I know. I continue to keep you in my prayers.

    Dan

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  8. Ben has such an altruistic soul. His spirit and love for those who care about him, seem to outweigh his concern about his own health. He is an amazing young man, and one who will, in my mind, make great strides in this world, as an adult. Ben so deserves to go to Hawaii, as does his loving Momma! I so wish I could contribute, but I am utterly poor right now. If I could, I swear I’d buy you first-class tickets, and have you stay at the most amazing spot there!! Love to all of you.

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  9. Don’t feel bad about fundraising – it’s not about you, it’s about Ben. There are all these great people around you who want to help.

    Gofundme does seem to be popular right now and it – or PayPal – are easy ways for those far away to be able to help.

    Big hugs always…….

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