The other day Gianna saw a picture of me and said,
"This is you with hair, Mommy."
"Yes, Gianna, " I said.
"You are wearing glasses in the picture too Mommy. Hair and Glasses."
"Yes, Gianna."
"It's two Mommies"
"No, Gianna. I'm still your ONE Mommy"
"Where is your hair, Mommy?"
"In the other room, Gianna, and my glasses are in my purse," I replied.
"Your hair is not on your head."
"That's right."
She looked twice back at the picture, back at me, and proceeded to finish her peanut butter sandwich.
And that's apparently about as far as I can go with a three year old.
Meanwhile, Ella told me she likes to "be like Mommy" .. the best thing I've heard in a while...
It's a look. She likes to parade around the house in any of my shoes and giggle and mock me out. "Simmer down! I can only do one thing at a time!"
After I took Ella's picture, Gianna eventually came around and added an accessory to my tresses for a more regal look....watch out Kate Middleton!
I guess the lesson here is to keep it fun and light. I still really don't know whether they understand that I don't have MY hair. Perhaps they do. My goal is to affirm to them that, it really doesn't matter. I'm still me, I'm still their fun mom. I just get to take off my hair whenever I want. The bald will remain covered around them I think, for now. I still try to grab the ponytail in the back of my head that's no longer there. I still inadvertently grab clips and hairbands forgetting there's nothing to tie back. But it's better. Really better. And a tiny bit of peachy baby-blonde regrowth, that promptly falls out every few days. A visual reminder that my rebirth is fully underway.
July 3 - Don't ignore too much!
What I believe to be my first trip ever to a hospital ER. I've spent far too long ignoring suspicious symptoms and trying to self diagnose. Achy traveling pain running all around the site of my port, traveling up my neck, shoulder, around my shoulder, upper back, unable to lift my arm. Excruciating! Called the on-call oncologist who reminded me that blood clots are always a possibility. Am I swollen? Am I short of breath? Do I have a fever or other signs of infection? Gianna had strep two weeks prior. These are not the type of fireworks I had in mind for this weekend.
True to form, a cancer patient registering at an ER for possible complications from treatment are handled like celebrity VIPs at a club. Open up the velvet ropes just for me, bypass all the other guests in line who are left outside for their turn in. People thinking, "why does she get to go back there when I've been here longer?" It's a strange situation for someone who until now has never been considered medically "vulnerable". The energy I have used throughout this process to prove to myself and others that MOST days I am or will be at 100%.. to be treated in this way at the hospital is sort of a reality check. No, you're only fooling yourself if you believe to be 100%. Serious things can and do happen. Even to unflappable me.
Full hair perfectly coiffed, I sat for about 5 minutes until they call my name. I skip past the woman who thinks she broke her arm falling, the woman who complains she can't get warm, a few others, past triage staff right into what is deemed the "Red Zone". People staring, probably thinking, 'What's wrong with her? She's walking!' Past all the other Red Zoners, white and cold, in beds and connected to tubes, most of them older and on oxygen. I get assigned to a tricked-out semi private room with plenty of cold metal serious machinery. No flowered sheets. No TV. Immediate attention. The ER doc running through the litany of questions. He's already been on the phone with the oncologist. And the on-call surgeon. Running tests. Blood..ultrasound, X-ray, right away. No, he says, I won't release you until I talk to your on-call one more time. The hospital equivalent of the penthouse guest at the Plaza Hotel.
It still took upwards of 3+ hours to get out, but in the end seemed like a bad case of tendonitis. No signs of infection, no visible blood clots. Fire alarm? Maybe so, maybe not. A reminder that I am in charge but fully accountable for my care. Yes, I guess I am medically vulnerable. Yes, I have to rely on the people around me to guide and help me through this. Yes, I guess I have to take a step back and understand that cancer treatment is serious business, and not a part time hobby, but from up until now has been an easy process. It still could be so much worse.
July 6
Chemo number 3. I believe every chemotherapy treatment should be a celebration. One giant step closer. More of the medications that will save and prolong my life and push along this rebirth. Around people who care about me. Because they want to. These days are truly gifts. Sean runs out to test drive a couple cars we may like to buy and to bring me lunch...turkey, Swiss on a spinach wrap and a celebratory coconut fudge brownie we share. I catch up with the woman from three weeks ago who comes in for regular iron infusions. Her driver even remembers me and asks about the twins. It feels like home in a way. My oncologist seems genuinely thrilled with my progress and the continued shrinkage of my mass, this time by roughly another 1 to 1 1/2 cm. I look forward to the day he needs something more precise than a tape measure to mark progress. I marvel to him at my complete lack of nausea and healthier appetite after treatment 2.
He says, cupping the back of his head, "well people who drink and some alcoholics have actually numbed their nerve sensors to the point that they are unable to feel nausea..."
"Okay then. So what you're saying is that all that partying in college paid off then, in a way.."
"Um, well perhaps.." he added with a chuckle.
Today's celebration came with an added bonus I didn't expect - yet another reminder that just when you get comfortable, there's always a curve ball lingering around the corner waiting to hit the medically vulnerable you. The port, which I have actually stopped thinking about, is clogged and has failed. Crimped beyond adjustment between my rib and clavicle. Must be removed and a new one implanted. This lifeline that took me too long to get used to now has to be removed and a new one put in. There is nothing to decide, I must have a new one. Maybe this caused me pain over weekend, maybe not. A reminder that yes, this process should be treated like a celebration of the spirit and soul but treated seriously in the physical sense. More surgery. Probably in the next three weeks. More lessons.
July 7
I read - and wept all over again - for myself and over a friend's blog that she published today chronicling the start of her own breast cancer journey. She is younger than me with three small children, including a set of three year old twins, just like me. When I published mine, she read it, and told me that in reading my blog was reminded that she too needed to have a follow up mammogram. Remarkably, she received her life altering diagnosis - over the phone - on the very same day as my first chemotherapy treatment. I wept for her and her emotional pain of a roller coaster she is undoubtedly on right now but also in hopes that she too can find comfort in the release of online journaling, as I have. And to remind others of the importance of check ups. I have found my very own co-cheerleader and I hope she knows she has one in me. We are fighting for ourselves and each other.
Finally picked up our new wheels. We involved the girls and let them climb around in the back while the sales manager walked us around our new vehicle. They were so happy sitting in the back and pretending to drive and practicing strapping in the seatbelts. A new adventure for them. They have only been in the van and our old truck twice. The sales manager stopped and said, "both your girls look like you....especially your hair."
"Yes", I said, smiling. "they're a lot like me..."
And that's a good thing.
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