girl at large

‘Tis The Season

The season to be overwhelmed, over budget and over scheduled. I’m opting out of a lot of things, streamlining the holiday chaos. But tonight we could not escape.

There are TWO parties tonight. One birthday, one holiday. For kids. The kids explain the parties:

“Mine is a sleep under but you don’t have to wear pajamas. You can wear regular clothes. But maybe bring a blanket. I wanna bring a small blanket, not a big blanket. No, not that one, a different one.”

”Mine isn’t sleep under, but I need a separate bag for my clothes just in case we decide to change it to a pj party. No, my backpack is full, I neeed another bag. No not that one, a different one.”

“Becky may not like the book, but that’s ok because maybe her sisters will like it. I don’t like it but thank you for getting it for her. I rewrapped it for you”

“It’s casual, it’s not like a grown up holiday party, I don’t have to dress up, it’s CAAAAASUUUUUAAAL Mom”

”There will be kindergartners there, and I don’t know any of them!”

”There’s probably some sort of food there, I’m hungry”

“It’s low key, but for the gift exchange I absolutely have to have a pickle keychain.”

“Has the pickle key chain arrived yet?”

“Has the pickle key chain arrived yet?”

“Has the pickle key chain arrived yet?”

“Has the pickle key chain arrived yet?”

 

One party is 5:30pm to 9pm, the other is 6pm to 10pm. My bedtime is 8. As Paulie, ever the modern parenting hero, rounded them up in to the van, I reminisced about my own elementary school years, particularly 1979—

Me: “Mom, I never get invited to birthday parties or sticker parties and I have no friends”.

Mom, acrylic nails drying, drags on a menthol Benson & Hedges: “What do you need friends for?”

 

Hospital Saga, Part 4. Gratitude Edition

It was a rough week, made rougher by interrupting a holiday. Though, honestly I didn’t mind the timing that much because my customers were also unavailable. That was one less thing I had to worry about. An empty inbox is very healing.

Also very healing are all the wonderful, thoughtful, courageous people in our lives. Thank you ——-

My rock of a sister-in-law who was unfazed by the dramatic change in plans, and cared for my kids for four days, keeping them full of Thanksgiving treats and distractions.

My other rock of a sister-in-law who always says insightful and compassionate things and keeps everyone up to date, even while juggling other family situations.

My dear friend who bought and delivered new flannel pajamas. I won’t call for a ride to the hospital, but I will text request a friend to buy me luxury lounge wear.

Mom. So many things, lots of phone calls and letting my boys sleep in her room. And loving them.

Dad. All the medical advice and empathy. I heard you talking to Paulie, you really delivered the steady presence he needed.

My Portland friend, who called me immediately at the hospital and said “WTF Cheese?” which is EXACTLY what I needed to hear at that moment.

My kind and generous next door neighbors who offered to spend time with the kids every few weeks so that if there’s an emergency they will feel comfortable with them. We hadn’t gotten around to arranging those visits yet, and look what happened! We will fast track that plan now.

My sister, who listened to probably waaaaay too much confusing medical stuff, when I was confused myself and also losing my words (medical brain fog), she is my best listener. A service that cannot be over valued.

The meal service delivery guy who quietly said “I’m praying for you” every time he put my tray down. 

My brother-in-law who just glides in and cares for the kids without ever a complaint or even a sigh. He’s our last minute guy, and always always happy to help. Also, very dapper. 

My deeply kind co-worker who takes on everything I send her when I’m dealing with this stuff, and best of all, she JUST DOES IT WITH NO QUESTIONS. 
 
My “It’s such a small-world” friend and neighbor who delivered yet another treat bag of PERFECTION. Only another harried mom would know to include juice boxes.

The Coven! (Can we let the name be known?). I’m tearing up right now. You made and delivered an entire white trash Thanksgiving meal, WITH FLOWERS AND NAPKINS (fancy white trash). Who knew my some of my closest friends were at school board meetings?

The doctor who didn’t laugh when I REQUESTED a Foley catheter. Don’t judge. Peeing in bed when you’re  hooked up to an IV and have a vaginal birth + menopausal bladder is goddamn heaven. They should make home versions.

And Stevie. Shhh, don’t tell anyone Stevie but I missed you the most.

Hospital Saga, Part 3

Diagnosis (sort of)

So, I was admitted for hypoxia and suspected congestive heart failure. My oxygen level was low and that troponin level (heart damage indicator) was high. On the second night I had an “attack” of pericarditis, an excruciating and frightening episode of extreme chills and intense chest pain, caused by inflammation of the sack around the heart. Enter the “Rapid Response Team”. Exit Paulie’s composure. 

For the next five days they lowered my blood pressure, raised my blood pressure, increased my oxygen, decreased my oxygen, raised my heart rate, slowed my heart rate, dehydrated me, rehydrated me….felt like I was a set of human Etch a Sketch knobs. This way, no that way, up no down. And let’s wake her up every hour and poke her tiny veins just for fun.

On day four, they did a cardiac Stress Test. This is usually done on a treadmill. For patients like me, who can’t do that and are hooked up to a bunch of IVs, they do a chemically induced stress test. In other words they hook you up to a bunch of wires, tell you to wiggle your feet and then GIVE YOU A FUCKING HEART ATTACK.

Worst. Experience. Ever. I’ve had chemo, radiation burns and torn during childbirth. No comparison.

After I recovered from that, and was breathing without oxygen for two consecutive days, I could be discharged. It took a day longer than we hoped because no one was available to do the cardiac CT over the weekend. The Stress Test, Echocardiogram and Cardiac CT showed that my heart has no blockages or other traditional causes of heart failure. Good. My ejection fraction was down from my normal rate, so my heart was weak. Chest xrays continued to show fluid on my lungs, because my heart wasn’t pumping at full strength. Not so good.

So what happened?

The consensus is that the oral chemo Lapatinib is the most likely culprit. Her2NEU chemo agents are known for this issue, thus the frequent baseline Echocardiograms I’ve had every six months through my treatment.

So, they’ve added four more medications to the mix. I wore a heart monitor device for three days to collect data on my rhythm (I was tachycardic occasionally). I have a cardiac MRI next week, more blood work and the usual round of appointments. Lucky for me, my care system has a cardiologist specializing in chemo related heart issues. He’s 12, but I trust him. He and my oncologist will consult and decide what to do next. In the meantime, I’m going slow, conscious of every breath and I hate stairs.

Speaking of heart stopping moments, I already got a “We reject your hospital stay claim because your doctor has not sent proof it was medically necessary” insurance letter. Bwaaaaaaahaaaaa, ok.

Hospital Saga, Part 2

Within minutes at Urgent Care, we realized it wasn’t urgenty enough, so we zipped down the road to the Emergency Room.

The secret to fast service? Chest pains and a Smurf-like complexion.

My oxygen level was 76, my chest had a tire on it, the portable chest X-ray showed my lungs were full of fluid. The moment the nurse flung back the curtain and said “Yep, you’re getting admitted”, I relaxed, gave in to the situation and absolutely luxuriated in the oxygen.

The days that followed were a mess of medications, IVs, blood thinners, heart monitors, scans, machines, a lot of 3M products, and many many faces behind medical masks. I had to tell the story of my symptoms and answer how are you feeling so often that I currently cringe when anyone, very well meaningly, asks how I am. 

Triponin is a protein the heart excretes when it’s damaged. A normal level is zero. At admission, mine was 6.  Three of the days in the hospital were just waiting for that to go down. It did, and was almost normal by discharge.

I’m still absorbing everything that happened. I’m honestly confused and a bit traumatized. It’s a struggle to find any humor in this part of the hospital saga, so this post is rather unsatisfying. But, my situation is also unsatisfying, at least until I get new plans from my doctors.

And also a do-over for Thanksgiving with my family.