girl at large

Christmas Chemo

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. 

Love Language

 

 

 

 

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.

Simple Questions

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

 

Chemo In The Time of Covid

(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.

DIY Chemo

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.

 

This Is Not A Journey.

I have breast cancer. It’s an aggressive type, fueled by my own hormones, and like a constellation it has traveled in a great arc from my breast to my sternum, out to my arm and up past my clavicle. 

I won’t go in to the story of how I was diagnosed, why it wasn’t caught “earlier”, or the howling anguish of the last thirty days. Not yet.

Today I’m ready only to say that things look bleak but also better than they did a week ago. It’s all horrible but also I’m very lucky. I feel like shit but I’m also ok.

Journeys are fun. This is not a journey. I hope, someday, it will be just a story.