Lymphoma Diaries: I should be sleeping

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I should be sleeping – but my sleep schedule has been whackadoodle since the C Diff reared it’s head. I slept all day Sunday and Monday, went to the GI Tuesday, slept half the day Wednesday, and took a 3 hour nap today.

I have to get up at 5 to go on a spring weekend trip to Cincinnati with the Cs. I’m taking my pillow and headphones and eyemask. Wish me luck!

In the hush of watching HP&TDHpt1, I started thinking of things I’ve learned since this second diagnosis of Anaplastic Large Cell Lymphoma.

– expect nothing, and everything. I was told I probably wouldn’t lose my hair. Whoops. I thought I’d have more symptoms from chemo. I have a little neuropathy in my hands and feet. But otherwise, besides fatigue, I think I tolerate it well…

– head scarves are fun but my head is hot all the time. Hats are easier. But looking good is really important to me. I feel much better when I look good.

– even if you lose your hair there is a period of stubble patches that require a razor – and nicks on your tender head aren’t fun.

– I don’t do well with a lot of pity – the one thing I can’t handle is being pitiful. Thank you all for not piling me with pity. I appreciate your acquiescing to my facetious humor about the whole situation.

– slowing down is hard. I have two speeds: pedal to the metal and asleep. I’m working on this. God is showing me. (But I’m telling you I can’t Netflix much more.)

– Food is my favorite thing to get as a gift – just FYI. You know, in case you were wondering – I have not eaten much but having food for my family has been a blessing. Despite surgeries and cancer the first time I have never had a meal train or anything and I’ve not gotten a ton of food other than from my Grandmomma so… when you have a friend who is struggling. Food. Even a dozen bagels is an amazing gift. Or a gift card to Moe’s.

– attitude is everything. Attitude and lipstick can change the trajectory of your day. No lie.

– my kids are my best gifts. They are so different but both my favorites. They’re such self-sufficient little buggers. They keep me centered and laughing. I’ve tried to keep things normal for them but they are actually keeping things normal for me. … I realized while braiding Carsie’s hair tonight is that I love braiding her hair. I love getting stains out of her favorite dress for a special beta club induction. I love helping Cole search the house for his blue sleeping bag (not the green one) before his Scout campout. I love the normal stuff of being a mom. MOMS – be very careful when you complain about the laundry or the grocery shopping or taxiing children all over town. I have been too sick or too tired to do a lot of that for the last month or more and darn If it isn’t killing me. I pine for a meal plan and a grocery shop without passing out.

…now, I have help and I’m grateful but I love being the all-knowing schedule keeper, the finder of all lost things, the silly embarrassing mom who sings Party in the USA with all the moves at the red light. That’s how I want my kids to remember me. That I was grateful for their company, that I let them be themselves while still helping them on a path to success and that above all things, that I loved them with all I have and never stopped hugging them, saying “I love you”, and tucking them in at night.

– even when you are 40, you want your mommy when you are sick. I call her at least 2 (sometimes 5) times a day. For no good reason. And she always answers. Call your Momma. One day she will be the one that needs you. Same with your Grandmomma. Mine sends me sweet messages every day and it is such a relief that my family loves me. So much. Even my baby sister calls to check me.

And. My husband. My Willie. It’s our Lucky 7 of being married and 10 years of being together. There aren’t enough words and I’ve been a cranky pants because of all the medicine and pain and sickness but I tell him every day how grateful my heart is that he LOVES me and he LOVES the children. He LOVES our family and is an amazing example of how to be there. Just – be there. He comes to all the kids stuff No matter how mundane or unimportant it may seem, being there is the most important thing. And – he’s there for me. Every doctor appointment, every middle of the night “emergency” no matter what he lives like he is the luckiest guy to get to bring me Gatorade, watch me get stuck up With needles and drive me when I’m nauseous. I can’t imagine that I could be the not only patient but willing servant that he is to me.

So. That’s my ramble for 1am. I have to get up in 4 hours to go on a Show Choir trip to cincinnati (which is more pedal to the metal – but YOLO and this is probably the only “spring trip” my kids will get to go on together. I’m determined to enjoy them.

People, if you learn one thing from me (besides how to look cute in head scarves and that lipstick can change your life), let it be that every day, every mundane “chore” is a gift. It is memories with your family, your friends, yourself. Because at the end of the day, we will all be gone from this Earth one day. And when I am – I want my kids to remember my super loud laugh, that I only said “No” when there was a good reason, that no matter how ridiculous or annoying or loud I was, I was THE Mom and they wouldn’t trade it for anything.

One response »

  1. I love that I have gotten to know you over the last couple of years. You are my inspiration for when I feel that life is getting to me. We are all blessed beyond what we remember. Thank you for sharing your story with all of us.

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