girl at large

Yes Really

Intake nurse: “How are you?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted.

Intake nurse: “Oh really? But no fever?”

Blood draw nurse: “How are you doing?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted

Blood Draw Nurse: “You’re having pain? That’s odd”

Radiation Oncologist: “How are you doing?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted.

Radiation Oncologist: “Still?”

Surgeon: “How are you doing?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted.

Surgeon: “Really? At week four? But no fever?”

 

TEST RESULTS COME BACK

Nurse navigator: “You have an infection and also your red blood count is way down! Are you sure you didn’t have a fever?”

Radiation Oncologist: “No wonder, well we can’t do any radiation until you are well, you have this infection! And did you know your blood count is so low?”

Surgeon: “Oh, you totally have an infection, that’s probably causing all the pain”

Oncologist: “Your very low red blood cell counts would indicate fatigue, are you fatigued?”

Chemo Nurse: “Girl I just saw your numbers, you are so sick! Let’s get these meds in you and get you out of here”

 

Waiting Is The Hardest Part

Mastectomy feels as brutal as it looks. I thought I would feel better by now, week 4. Not completely better or healed of course, but much better than I do feel. The three drains are still in, and still producing more than 30ml of fluid each day. One of them, the bugger, likes to produce as much as 100ml in a day. There’s nothing I can do to change that, I just have to wait for my body to absorb more liquid. And wait and wait and wait...

The iron bra sensation (exactly as it sounds) has improved, but by the end of the day I’m curled up like a roll-poly bug. The swelling moves across my chest and sides and back again like gelatin. Where there is swelling, there is usually pain. I’m now able to rise out of bed from a completely flat position by myself, which is an improvement. For the first two weeks I had to be propped on a wedge with additional pillows wedged in on each side. Paulie compared it to packing in a driver for the race.

Three things I have learned during this process:

1) There is no standard of care post-mastectomy. All my online support groups are clattering with conversations about my doctor said this, that doctor said that. Even from my own cancer team, I got conflicting advice for post operative self care.

2) Infinitely more money, time, and research has gone into building fake breasts than healing chests. Just put like 1% of that please to post surgery healing and flat closure techniques pretty please, a pittance.

3) Dressing with a flat chest and finding clothes that will flatter me is not a problem. I repeat, NOT A PROBLEM. To all the dear Facebook ladies who worry that they won’t find tops that look good after their mastectomy, ahem, I see you wearing nothing but sports team sweatshirts before too.

 

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. 

Sunny Days

 

Our bubble includes more vaccinated loved ones every week. The stress of waiting to qualify is gone as the age restrictions have been lifted, everyone age 16 and up in Wisconsin now qualifies. I hear fewer anecdotes about not being able to get an appointment and see more postings about “no waiting” opportunities, so it seems the entire vaccination process has improved.

For the first time since last March, Viv was able to visit Nonna. Hugs and coffee in her lovely sunroom, an impromptu knitting lesson. Such normal, small things. So profound I can hardly look at the photos without tearing up.

We have hoped for this day, I have feared this day might not come, we have judged our every move from getting groceries to attending school on its possible effect on this getting to this day. We have endured hospital stays where we couldn’t see each other, holidays apart, long nights scared that we might lose someone before we saw them again. 

I am deeply grateful for science, for logistics, for pharmacists, even for website builders. The string of people required to get those shots in our arms, it’s amazing.

Despite all the current social chaos, the heated climate (both figurative and literal), we are an amazing society when we want to be. 

 

Spring Is So So Close

We went for a little walk around the block last night and Charlie said “I want to go to a restaurant or a cafeteria or maybe a bar”.

We all do Charlie, we all do. 

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.