Thank you Internet, today was a good day. We managed three big wins you and me together:
I successfully won a medical billing dispute.
We completed the registry for Viv’s two week summer camp.
And best of all, Mom got her vaccine!
It’s been a very good day. I’m going to bed now to savor the relief.
The monochromatic outfits we all loved have to be inspired by The Crown, don’t make fun of the Queen ever again.
Men need better dress up clothes. Get some interesting coats dudes.
Bernie is in front of me at the post office every time. Every event needs a mascot.
I didn’t know it was Gaga because I had on only audio at that moment, I thought it sounded weird. I am clearly not musical.
The whole of my creative life will not add up to one tenth the impact of one line of Amanda Gorman’s poem.
I was on the Ohio turnpike (excellent waysides!) when I heard the American Carnage speech; I’ll always remember the camaraderie with other carloads of women’s marchers headed to DC as we listened.
I was not ready to love Garth, but there it is, I do.
I really really want a hard copy of this week’s Scholastic.
The leadership of one person does make a difference. The integrity and dedication of a team of many competent people makes a difference.
We have a lot of work yet to do.
I can’t tell you how much it means to see these two together. It’s been a hard hard year, this kiddo needed this buddy so bad.
It’s a daily joy to watch Viv be responsible and empathetic, learning how to take care of a living thing. My favorite moments are when he’s worried that Stevie isn’t warm and comfortable at all times. Viv’s favorite hoodie is frequently found gently placed on Stevies snoozing back. For my reflective and reserved child, who misses classmates and playgrounds, running errands and seeing grandparents, this little friend has woken something up that has been so dimmed.
Also he would probably ditch the cat in a hot second if it meant more time on the Nintendo Switch but whatevs.
The timing of the fourth round of chemo, just a few days before Christmas, sucked. I was the sickest during the height of home bound festivities. Chemo day itself is not hard. After chemo is hard. Like the unexpected (and rarely talked about) challenges after childbirth, the after affects of chemo are less known, wildly varied, and involve a lot of fluids.
I’d been overdoing it for the holiday for weeks; keeping busy keeps my mind off the illness. Making good things happen for the kids keeps the darker thoughts at bay. Sometimes, in the early morning when I was moving that damn Elf, despite my efforts to suppress them, my thoughts turned to cancer and not wrapping paper.
Why are there so many types of diarrhea?
Is this what my bare head felt like when I was a newborn?
Just how many red blood cells does a person need?
Why do I crave a pineapple upside down cake?
Why did no one tell me about the bloody noses?
Someone needs to make nice plastic flatware.
Contacts, contact + readers, glasses, glasses then readers, back to contacts. Will I ever see right again?
My fingertips are numb. Or are they just cold?
I really didn’t ever need to see my fupa in that bald condition.
Why does it take all my energy to text someone back?
If I just stop going to chemo and pretend this never happened, what then? (Being mortally ill without ever feeling sick is very very strange)
I really don’t want to draw my eyebrows in again today.
How many more Christmases do we get?
Ok, time to think about something else and pack the ornaments and tears away. Goodbye Elf. It’s been fun, but it’s over. It’s not you, it’s me.
Me: “Charlie, how many cookies have you eaten?”
Charlie, gesturing adorably to the nearly empty tray: “I’ve eaten all the ones that are missing”
Tomorrow is chemo round three and I’m sleepless on steroids and dreading it so here is a picture of how my husband arranges the kids’ treasures after a pandemic Autumn walk.
At least when he leaves a mess on my desk he does it correctly.
The thing about chemo nurses is they will cheerily ask “So, what did you do this weekend?!” like you didn’t spend it:
having diarrhea
being constipated
feeling nauseous
feeling dizzy
taking nausea medication that makes you dizzy
counting hives
having bloody noses
counting pills, writing it down and then immediatly forgetting what you've taken
being cold, then hot, then cold
gargling with baking soda and salt
gargling with apple cider vinegar
having bone pain
sleeping
not sleeping while everyone else is sleeping
moisturizing your bald ass head
(This is my favorite photo of exhaustion.)
I’m in the infusion room right now and all the nurses are talking about the next phase decisions coming down from their organization leadership. So far I’ve overheard chat about—-surgery and electives are going to be stopping, procedures that might have been overnight admissions are now only proceeding if the patient can tolerate same day outpatient, they started another tier of hazard pay at +$30/hour, “But what difference does that make if you get quarantined and yeah you made all that extra money but you get back to regular when you’re off and you have all that hassle for your family and get sick yourself”
Etc, etc. It is very different chat than three weeks ago when my chemo nurse freaked me out sharing her unsafe Halloween party plans. Wisconsin is currently exploding; for weeks now we have been one of the six worst states for cases, geographical spread and hospitalizations. Tragically, the death rate will follow the same trend.
Even little things are affected by the recent surge and hospital overload; for example the hospital pharmacy is perpetually backed up. I’m on hour two waiting for my meds that were supposed to start at 10am. And of course Paulie couldn’t even be in the building this time. Previously he could at least be in the waiting area, and he could be in the room at the diagnostic appointments, but no more for any new patients now. Can you imagine getting your disease diagnosis and prognosis news alone?
I’m glad they instituted the changes for safety but for total patient care it fucking sucks. I really feel for anyone needing medical care during this time.
Stay vigilant everyone! I know we are fatigued; its exhausting to maintain a constant Threat Level Ten. Hopefully our new leadership will give us the scientific information, competent pandemic team, and compassionate & coherent speeches we all need to persevere and push through to better days, with more lives saved than lost.
Halloween 2020 is testing the creative powers of parents across the country.
Tonight I’m thinking about my greatest parenting triumph when at seven o’clock on a work night we made a Batman costume from household items (including a tarp, duct tape, construction paper and shoelaces) in ten minutes so Viv could go to the elementary school monster mash party at the very last minute and then promptly take it all off to jump around in a cafeteria with a throng of sweaty seven year olds.
We did not take a single fucking picture.
So, here is photo of Viv the year before, as Frankenstein’s monster.
So the best fix for mouth sores from chemo and the pain of thrush, also caused by chemo, is a prescription mixture called Magic Mouthwash. It wasn’t provided in advance, or even mentioned by my chemo nurses. Typically around 50% of chemo patients experience canker sores, mouth sores, mouth pain and/or a thrush infection. Many experience a change in taste so extreme that even water tastes bad. Water.
This is me.
After some back and forth with the nurse line and doctor, we finally got the prescription called in for Magic Mouthwash today. But it’s not covered by my insurance. The pharmacy mixes it for $138.00. Unmixed, the ingredients are $18.00.
Guess which way Paulie went.
