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The Mozzarella (a solid packed in water)
The Club Sandwich (layers of constipation and diarrhea)
The Scooter (sometimes also called the Squeezer)
The Pressure Washer
The Hot Pressure Washer
The Fluffy
The Green Monster. (You ate nothing green, you drank nothing green, it’s just green for no reason)
The Sequel (I didn’t like the first one)
The Last Train (one more time before bed)
I know it so well and yet I still can’t spell it.. diareea, diharehea, diereha…diarrhea!
People, including friends and family, will become afraid of you. Afraid of the mortality you represent, afraid of what to say, afraid to acknowledge your tragedy.
Other people, sometimes surprising ones, will step forward into the uncomfortable space and be there for you.
Paper gowns fit no one.
There’s a secret code for getting a complaint, especially a pain one, taken seriously. You must say it at least twice. So rather than wait a week in between appointments, complain loudly and repeatedly at the first opportunity.
People take the easiest path. If I had been able to schedule my mammogram screening right in my obgyns office rather than have to visit a website that wasn’t working and then call a separate location that put me on hold for twenty minutes after which I gave up and forgot about it for a year…well, I might have caught it “earlier” and suffered slightly less. Like programs that automatically enroll folks in a 401k, with an opt out method rather than opt in, it should be designed for the imperfect human users that we are. It would save more lives if providers directly scheduled important routine screenings while you are still in your doctors office, still in that ill fitting gown.
The radiation machine looks like an enormous kitchen aid mixer.
Chemo and other breast cancer treatments can affect even your eyesight! Generally, the treatments will leave lasting changes to your body. Even those that “beat it” will live the rest of their days with painful side effects, medication reactions and surgery limitations. Our grief for the body we last had on the ultrasound table is deep and lasting.
I’m not claustrophobic, I just don’t like CT, MRI and PET tubes. If it was a spa bed, a tanning bed, even a middle row airplane seat, I’m ok. Scan tubes make random horrible noises, slide you in and out and sometimes oddly up without warning, like you're a hot dog on a malfunctioning 7-11 machine.
Straws are your friend, I underestimated them.
Staging is misunderstood. It’s not only about time, size or spread. It’s mostly about biology—the type of cancer cells. Take that + cell grade + cell growth speed + cell hormone receptor status + location + size + spread and then you get the stage. But stage is not the same as expected outcome. It is only helpful in planning the treatment, and even then, it’s the biology that’s informs most of that. It’s main purpose is in tracking statistics for hundreds of thousands of patients over decades. Stage is your Breast Cancer ID, it is not you, it is not your prognosis. It’s not even a complete view of your disease. *Except stage IV.
*Stage IV is the redheaded step child, the thinnest last chapter of every breast cancer book, the island on which I found myself. Because stage IV breast cancer diagnosis is so closely associated with time (vs biology and location), it’s loaded with guilt and shame. The emphasis on “early detection” over the last two decades has been lifesaving, but also detrimental. Detection is detection, and disease should be detected as soon as it’s possible, and sometimes it’s just not possible before it’s location or size is beyond the region of the breast. And that can happen between mammograms, that can happen, with some kinds of tumor biology, in just months. And without a single symptom. Which brings me to…
Lumps. Yeah, most breast cancer patients never felt one. Most obgyns didn’t feel them. Mine didn’t. I had four tumors, never felt a single one, even after I had an MRI SHOWING ME EXACTLY where they were. They were only 2cm, and deep in my tissue. Self exams are being phased out by the worlds top two breast cancer authorities. Relying on self exams should not be a thing. Self awareness,however, that is a thing. If you notice a change in skin texture, size, nipple shape or pulling in/staying erect, or of course a lump, go in to your doctor for a screening.
You get stupid rewards like bell ringing and certificates because they can’t give you a clean bill of health. That’s not a thing for most breast cancers. Even the acronym is depressing…NED, No Evidence of Disease. Not No Disease, they best they can say is no proof of it. Which also means no proof that it’s not there.
Surgical drains are strange! They are REVERSE IRRIGATION TUBES INSIDE YOUR BODY. Shudder.
White breast cancer is different than Black breast cancer. Screening rates, detection rates, survival rates, and treatment outcomes are all significantly lower in the Black population. That has to change. I don’t know how to help that happen, but I’m learning how to pay attention to it. Asking the question “How are you addressing the disparity?” of every organization I’m working with or touched by in this process is a place to start.
Staying Flat, (not having breast mound reconstruction) is not a de facto option provided at all mastectomy consultations. Most patients have to ask for it, and many still face a horrible disfiguring assault on their body called Flat Denial, where the breast and/or plastic surgeon leaves large flaps of empty skin behind during surgery “in case you change your mind”. This happens even when patients clearly request Flat without reconstruction. Flat is a very valid, and very healthy (fewer surgeries, no foreign objects, no risk of infection or complications) choice. Advocates are working hard to educate both patients and providers, but it shouldn’t be so hard.
Diarrhea comes in so many many forms. Who knew?
All the providers assume I’ll want falsies. Nope. Flat is good. They even say things like “but insurance covers them!”. Um, ok, but thats still not a good enough deal.
The “at least” trap is inescapable. I hate it when people say it to me. “At least you caught it now”, “at least you have support”, etc. I hate it. And yet, I caught myself saying it just the other day. I think it is a natural human instinct to find the thing that can make something survivable, to grasp for that buoy. Perhaps our language around it is lacking. I will have more grace next time.
Where are my nipples? Like, what do they do with them?
We went to the pool today. I had enough energy to do two things, which is a lot. Charlie, who is afraid of the shower, spent an hour directly under the spray nozzles getting drenched.
Felix showed off his head dunking, bubble blowing and dog paddling. The bike riding continues to be a success, and he now has permission to ride down the block alone. I rarely worry about my oldest; he’s cautious, thoughtful and always observant:
“Why do they call it a milk shake? It’s already made, it should be a milk shook.”
Last spring, as we settled into a work-from-home, school-from-home, freak out-from-home routine, I often felt helpless. Helpless to stop the pandemic, helpless to keep my job afloat, helpless to keep my parents and in-laws safe…I knew how to hunker down; the 24 hour domestic family maintenance wasn’t hard. It was a lot like maternity leave, which still felt recent.
But the unknown. The uncertainty. The lack of answers for the kids. I didn’t know what to do. One evening early on, I gave the kids donuts in bed because I thought we might all die and that would be a nice final treat. I wanted to comfort them like that scene in Titanic when a mom tucks her two littles into bed. Dramatic I know, but in the early days we didn’t know how it spread, didn’t know how deadly it was, didn’t know anything except that someone I worked with died in his bed after feeling ill just a few days. Anything was possible, including the worst. And for many many many, the worst is exactly what happened.
Most mornings, we walked the kids over to Mom’s. Felix tried his scooter. He fell. He walked it some days. Other days he scooted a bit. And then, one dappled day, he was gliding down the block.
I cried. It was the most beautiful thing I had seen in a very long, anxious time. He was free, like a scene in The Ice Storm when the girl glides her bike down the hill, unaware her mother is watching with awe and envy.
Today, more than a year later, we are safer and yet still unsure. The unknowns are more unknown. Sandwiched between the start of the pandemic and whatever phase this is now, was also cancer and loss. Every day has been a singular challenge.
And also today, out at the playground, Felix tried his bicycle. He rode in a sweeping arc, smooth and free. It’s most gorgeous video I have ever seen.
A bit dramatic, I know, but Mama never learned. And I’m so damn proud.
“I’ll need you to be masked”
“That’s ok you can wear a mask”
“I know, but I also need you to wear a mask”
“You need ME to wear a mask?”
”Yes”.
”We can talk about that back in my office”
“I’m not meeting with anyone who's not masked, just like my email explained. I’m immune compromised, I’m a cancer patient”.
“I’m a cancer survivor too. And I’ve already had it”
“I’m in active treatment. Please wear a mask”
”It’s a pain”
”It’s my life”
“Fine”. Asks receptionist for a mask.
“The mask they gave me sucks, I’ll have to go to my car to get a better one.”
“Ok, I’ll wait right here for you.”
“Sorry but I despise masks”
Thanks for valuing my life less than your mild discomfort.
I was showing Mom today how my range of motion has been affected by radiation. Lifted my left arm well over my head, stretched it to touch my right ear, all good. Lifted my crooked right arm and it barely went above my shoulder…
Mom: “You have to do something about that!”
Yes, thanks mom.
Some other recent Pat moments include:
“You look less, you know, cancery.” As my hair was growing in.
“Well it sounds like you have a ways to go”. When I was lamenting that I just wanted chemo to be over.
“I’m not saying I’m making it up, but in my head…” I laughed so hard I forgot what this was actually about.
“You look fine”. As I adjust to dressing flat, bought an entire new wardrobe and invested heavily in Sephora. Fine? Fine?
Oh Pat.
This is Nibbles. He was lost yesterday, sometime between daycare and Nonna’s house, somewhere between backpacks and car seats and playrooms.
I found him late at night, just in time to take bedtime from tears to tucks.
And that’s about the only thing I managed to feel good about this week. I’m feeling defeated. I’m in the last long stretch of active treatment, or so we presume, until the next scan reveals my future, if I have one. The chemolite™️ side effects are accumulating, making my energy sputter out by 2pm, and introducing a new hell of intense joint and muscle pain. Work is no longer the reliable escape it once was; as people leave for better jobs and the economy has fits and starts, it feels too precarious. And Covid is roaring back, making the recent brief joys once again scary and risky for me with my damaged immune system, and of course my kids are still vulnerable.
Most distressing, Paul’s Dad, Rocky, my children’s stalwart grandfather, died two weeks ago after suffering a year of congestive heart failure. I will write a tribute to Rocky another day, and it may be private. It’s not entirely my place. But I do want to share that we are grieving, and I’m struggling to help my kids understand.
Sometimes it’s all overwhelming, and I just can’t do much more than scroll, or sleep, or cry.
Some nights, you are just inconsolable until Nibbles is back where he belongs.