Story 1

Hi friends,

I wrote an update for the other “Lotsa Helping Hands” website but I thought you–-my good friends–could handle another update, more personal and raw. Please forgive typos; I feel like my editing skills have taken a hit with all this. I will write whole when I mean hole; it’s very frustrating.

It’s been harder now that the news has sunk in. For a while there I thought I would wake up and this would all be over. But the enormity has made itself known. I have such bouts of sadness I can’t stop crying; need to medicate myself because I can’t go down the dark hole that is waving to me. It’s like I want to scream fuck you but then I just half-heartedly say “blah” like an old man and shuffle along. I have to up the fight but sometimes it feels like too much. It’s been such a shock and total smack in the face but I feel like I’m just getting up off my feet and adjusting to it all. I need to get my head in another space. It’s strange because I was always the researcher, the doer – with both pregnancies I had the books and read a ton and was exercising and eating what they told me to and really disciplined about it but with cancer I’m just sitting here, stunned.

And there are some other small lights in the tunnel: I’m talking to my aunt that I hadn’t spoken to in five years, and she has been amazing. She might even visit. And my dad has just been incredible, emotionally and financially. My mom has been staying with us during the week which has been good. As my sister says, we’re all going to hate each other at some point in this process so we just need to accept that. But it’s strange to have other people’s moods and attitudes affect me. I want to tell them, I have cancer now so you can’t act like that with or to me. But I mostly don’t.

Penelope is continuing to struggle with it all and is still “running away” about twice a week. It breaks my heart little by little (did that sound like a country song?). And watching Roman run to the babysitter and my sister just leaves me in tears. I feel happy that he is safe and comfortable but there’s just nothing quite like watching your baby run to someone else. He’s growing into such a confident, strong little guy who will give you the biggest, sweetest smile as he rips down the curtains.

I tried to read Penelope a cancer book for kids – “You Are the Best Medicine” – and I kept trying not to cry and she said, “Why are you reading that in a funny voice?” And I had to tell her I was pretending to be an old lady and she said, “Please don’t. Let Daddy read it.” So he did.

The food thing is still a thing. I have such specific cravings and then eat about 5 bites and am completely done. I woke up at 4am today and had a huge sundae (at least there were almonds in it). And I’ve had many, many chocolate chip sweets. (Another cookie? Don’t mind if I do!) And I had my first sip of wine yesterday, which was delicious, although I couldn’t finish the glass. But it made me feel more normal and I was so happy that I wanted some. (The week before I couldn’t even watch anyone on TV drink or smoke or I would gag.) I’m just going to start going through my cellar drinking on the good stuff; if anyone has learned that there is no better time to open that “special” bottle it’s me.

Sometimes I can get myself to eat the “cancer food:” the green kale and spinach soup, the pumpkin ginger pudding people drop off. But burgers, fries, and club sandwiches are more my thing lately. But people have been amazing about meals; they drop off a complete meal every night but Saturday and Sunday. And the meals will come through March. It’s astonishing. People I spoke to twice at the preschool have signed up or sent me notes. I can’t be that amazing, right?! It’s just beyond words.

Chemo is supposed to be cumalative, meaning that I will feel worse at it goes on. I have treatments on and off until June but the strongest dose is supposed to be until February 1 so hopefully the remaining months will give me more good days. The past 3 days have felt amazing and I long for more of them, but I’m dreading Wednesday knowing what is to come: days in bed and feeling like shit. But I’m already plotting my escape; the doctor said to go somewhere warm so we’re thinking Palm Springs for February break…the image of a warm pool and clear, hot air is alluring. I have also become a bubble girl, meaning that no one can get near me who is remotely sick or who hasn’t washed their hands. (My white blood cell count went from 7,000 to 2,500 after the chemo, which is normal but means that I can’t fight off infections easily.) Penelope got a bad cold this week and I had to stay away from her, which was just too much.

The insomnia is back—I’m wide awake at 4am until 6am and then crash. At least it’s getting me writing. I wake up and practically run to the computer, which is an amazing feeling.

I found out that only 5,000 women get diagnosed with inflammatory breast cancer (IBC) each year. Seriously? I can’t even get just regular old breast cancer? It’s beyond belief. The top research and top guy in the world for IBC is in Houston so we’re trying to get in to see him; he will review my charts next week. It’s like trying to see the President—I have people “working” on an appointment. So insane. You’d think he’d want to meet one of the 5,000, right?

Today we’re getting the Christmas tree with my dad and putting it up. Penelope and I are so excited; Moon less so knowing that he must then spend the afternoon stringing the outside lights! I am going to have one very cold, very expensive glass of Champagne while we trim the tree (thanks, Dad!).

That’s all for now – hope you are all having wonderful holiday seasons – enjoy those xmas parties and have an eggnog for me.

Xoxo

With much love,

Laura