girl at large

In The Trees

“Everyone is different” says every oncology doctor. Recovery from surgery is no different than chemo in this regard. Ask a question, your doctor will give you the no answer answer.

 

So, I don’t even know how I’m doing because there is no yard stick. How am I doing compared to last month when I could shower, reach the kitchen shelf, drive, and put on my own clothes? Much worse. How am I doing compared to others in treatment who have drains for months, infections, seromas and other complications? Pretty darn good.

 

I was told a few times, by both folks who have had cancer and those who haven’t, that compared to chemo, surgery would be easy. “Compared to everything you’ve been through...” they said. “Piece of cake” someone said.

Nope.

 

I think this has been harder for me than chemo. Not in the way most people assume, I don’t feel that much sorrow over losing my breasts. It’s the loss of mobility, of strength, of thoughtlessly living in my body that I grieve.

 

It’s awful. 

I’m hunched forward, the skin and muscles tightened like an arthritic hand. Lightening strikes of nerve pain shoot across my chest and sides. Each movement is a pull on a slot machine of sensations. Not all are pain, but none are pleasant. Fatigue is my new base line, I have maybe three good hours a day. I can’t lift my kids, I can’t pick up anything off the ground. In a house with young children and their debris, in a life usually spent doing and making, cooking, cleaning, working, gardening, creating....this is debilitating.

I’m hopeful that physical therapy will help, and my chiropractor, and time. But holding space for all I have lost, and rejecting toxic positivity cancer culture, is important to me now. I will never be the same, and I’m sad about it. 

Full Upright Position

Paulie is serving us pretzels and ginger ale in bed tonight because Charlie’s class is pretending to go to Israel this week and Charlie first freaked out about going on a plane without his family, and then once we explained, was totally bummed about not getting to experience flight. Paulie brought them to us on a little tray. 

And that is pretty much all you need to know to understand just how much of a hard working, caregiving dork this guy is.

 

Pancakes

      


 

I had enough energy today to make Sunday morning pancakes. They were very handy for explaining to the kids, and a bit to myself, why surgery day is a good thing. 

Holy Crap That Was Awful

This is the first three week cycle where I didn’t get the cytotoxic chemo drug in my infusion.

I had no idea.

I don’t think I really grasped how sick I was even on my “good days”. There was a predictable rhythm the fourth, fifth and sixth cycles—I was “fine” for three days after infusion (thanks to steroids which had their own awful side effects but made me feel false energy), then sick for ten days and then “ok” for seven days before the next round.

I was not fine. I was not ok. 

Today is the first day I feel like I did in September. Less a few side effects still lingering (neuropathy, finger nails, cold bald ass head) of course.

I can’t explain how chemo toxicity inhabits your entire body. And when it’s absent, your entire body is released. Like childbirth, I can already see the visceral memories of my chemo side effects fading. The suffering of this treatment phase is over, my energy is returning. 

Don't tell Paul yet, I want dinner in bed again tonight.

Spring Is Coming

 

This is the time of year we usually plan our spring break road trip. Me, Mom, Viv and my copy of Historic Hotels of American hitting the road. Last year, we canceled at the last minute as COVID was closing in and states were closing down. This year I hoped to do a localized version, perhaps a trip along the Mississippi River in western Wisconsin. But I hadn’t booked anything yet, because you know...cancer.

After five months of chemo, this week was scan week. Monday was my PET scan, Tuesday we got the results. As my oncologist said, in his very understated way, the results are “a dramatic improvement”.

The tumors are gone. The lymph nodes, all of them, are clear of cancerous activity. Gone.

It’s the best possible result from chemotherapy. It’s most likely because my breast cancer type is known to respond so well to the HER2neu agents combined with the chemo drug. The care team will be proceeding “like they would with someone who is stage 3”.

I’ve been absorbing the news, staring at the images. Already, I’m inundated with information about next steps, doctors appointments to be confirmed, calls and texts to schedule surgery. It’s all happening fast, like the initial diagnosis. The first lesson of cancer is it controls your schedule. 

I may have been pulled from the brink, but I can’t pull anything past Mom!

As I explained that my surgery will be scheduled for the middle or end of March...

“So no trip then?”

 

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.