Take a breath in. Hold.

—1—

The voice from the overhead speaker is kind and direct. I’m on my back, on a sheet, on a narrow metal table, arms up and grasping onto metal handles above my head. Alone in a room, giant machinery whirring, smoothly, around me in an arc.

It’s my forty-fourth birthday, my fifth day of radiation, and I’m trying to figure out where I’d put a camera. Not that I need a camera, but this experience — surreal and very real at the same time — has so much going on visually, that trying to figure out how anyone would somehow capture any part of how this feels, or just how it looks is a real puzzle.

And that’s as good a distraction as any. At least as much as the overheard speaker playing, in an unintentionally hilarious twist, I’ve Had the Time of My Life.

I see the reflection, in the large rotating pane of glass, of the blacklight-toned laser lines that locate my body within the space. I see a growing and shrinking pixelated field of yellow below my ribs, and a red orb across the lower part of my sternum as I breathe in and out. A glowing sun next to a shifting mountain.

In the giant mirror-eye above me, with its opening and closing aperture, I see a reflection of what the technician calls “the material,” a lightweight curtain of tiny brass plates that frankly look like the texture of every fancy 70s thrift store purse I own. Disco, but make it medical.

something thrifted & shiny + duct tape is pretty much how I’ve lived my life, so… fitting, I guess?

And then, for contrast, there’s the white duct tape fastening that in place, a pillowcase and a washcloth shoring up its position. Add in a few sharpie marks on my skin. Where within this could an observer, and another machine, insert itself at an angle to capture any of it?

—2—

Each day I ride downtown, mask up, and tell security I’m headed to the basement. Each day I notice something a little bit different, even if the days start to bleed into each other. A few, I make field recordings on my phone. A few I feel barely awake. Most days I hope that lockers 11, 12, or 13 are available — they’re the closest to the changing room — and my brain automatically kicks into “got a tattooed tit, say number thirteen,” which is kinda hilarious to me now. Yes, I just have one tit, but it’s the area where lefty once was that’s got the little ink dots. I think about my friend Miles and how when I first met her she showed me her number 13, then her Julie Doiron tattoo. Outside the Pirate House bonding over dumb shit. The start of a 20+ year friendship.

—3—

I’m back on the table. Being scanned, looked at, examined, adjusted, and then, well… beamed? Waves are sent at me, towards me, into me. Do the beams count as light? Is it light entering me? There’s really nothing about the radiation I can see, which makes analogies or visualizations difficult.

I stare into the weird video-game goggles and think about that EMA/The Future’s Void cover in the zine I made during my first go-round with this stuff seven years ago. I think about how I should’ve laid out that spread better, the adjacent diagram getting split more and more with each successive copy-and-staple. I think about the space between the pages and the slight pull of a scar, the attempt to join things together. I think about replication, how in libraries and archives sometimes we talk about replication supporting preservation, that the more copies there are of something, the more likely it is a copy will remain. I think about bout how that’s good for zines and ephemera, and bad in terms of cancer cells.

I think about how my tiny tattoos serve as registration marks for aiming the radiation each time. They’ve added a new one on my clavicle, a crude tiny dot. Each time they set up, I hear them say “96.5, sub-clav.” Honestly? I’d rather just have something that’s straight-up CMYK or a some random ill-advised kitchen table stick-n-poke.

Compared to seven years ago, the scene this time is much more sci-fi, the goggles narrower, and my field of vision goes far beyond the pong-ish goggle display that monitors my breathing. According to this video, I’m supposed to be using these “augmented reality glasses” to look at something in a museum, train on a Pelaton, or pilot some dumb drone. But the use of this headset today is both far more basic looking, and far more critical to my goal to keep on livin‘.

Here’s how it goes:

You breathe in, and as you do, an orange line moves up and down. Your goal is to get the orange line into the green box, then hold your breath for as long as you possibly can. Twenty seconds, thirty, more. Keep as still as possible, make deals with yourself. Learn how to keep holding when you think you can’t any longer.

During the first pass, they’re taking a 3D image. During the subsequent times that the giant panels slowly revolve around you, you can take a few little breaks. When you allow your breath to move the line out of the green square, the giant parts of the machine surrounding you pause, until you breathe in again. You’re directing and controlling this giant thing that entirely surrounds you. You feel tiny. And kinda powerful.

—4—

The zap sessions themselves are short. Years ago at U of M, I had a radiation tech who — noticing the Guns & Roses winter hat I rocked in place of hair — queued up November Rain. Those nine minutes lined up just about perfectly. Bless that dude for making me laugh/feel seen during an exhausting and isolating time.

It’s the getting to and from the hospital downtown, the waiting. That stuff means that each M-F for the last six weeks I’ve needed 3-4 hours for this daily task. One day there are four of us in the waiting room and according to the “on deck” screen, three of us are named Maria(h). All different ages, backgrounds. I learned that the kind woman at the front desk has a daughter named Mariah. I hope she never has to do any of this. If she does, I hope there’s someone as kind as her ma working the front desk each day.

—5—

It’s done. Suddenly, it’s the last day. One day earlier than I was expecting, but none too soon. The last few weeks I’ve been getting dizzy if I stand up quickly, sleeping a ridiculous amount, and feeling clumsy and distracted.

I try to show up the best I can, as a friend, as a person, but I feel really dumb and really drained. I’m supposed to go out for ice cream to celebrate, but instead fall asleep at 7:30pm. This isn’t the version of myself I want to be. It’s been a long six weeks, the last big chapter in a long eight months of treatment.

But this is it. After this, I’ll have checkups, and some additional things to prevent recurrence, but overall?

I’m free. I’m done. It’s time to get to resting, and healing, and making things, and loving all my favorite people better, and being in the world the ways that I want to be.

I exhale.

Mid-March Update: Back to Ypsilanti

Mid-March Update: Back to Ypsilanti

It’s only been a week. The blue dye they injected into various spots on my arm & hand is fading, but still there, looking a little sci-fi. Yesterday the doctors checked everything out, removed the weird tubes, and gave me the thumbs-up to return to Michigan for a bit. 

Saturday, I’ll make my way back to Ypsi. For the next couple of weeks, my only job is to rest and have some gentle hangs with folks I adore who want to help me recover. I can totally do that! 

I was so busy running around getting ready for surgery, trying to prepare for difficult emotions, that it hadn’t occurred to me just how deep a sense of relief I might feel afterwards. 

Yesterday, the doctor went through the pathology report with me, and each thing ended up better than I’d hoped: 

  • the tumor was significantly smaller (< 5mm) than they’d anticipated, even from the most recent imaging (the chemo + immunotherapy worked well!)
  • the surgeon achieved clear margins (the problem area was completely removed!), and 
  • NONE of the lymph nodes they removed showed any signs of cancer 

After months of treatment and side effects, this feels like a real milestone. I still have some treatment to do to ensure things don’t come back, but those pathology findings mean that as of last Wednesday, I’m cancer-free! Fuck yes. 

It’s remarkable how much easier it becomes to not sweat bullshit once you’ve had one of your worst fears occur and somehow (great doctors, therapy, friends, family, total chance, grace, friends, dumb luck, oh, and did I mention friends?) come out on the other side. 

For all of that, I am thankful. Resting. Living.

*If you recognize the mural above, you’ll know where to find me!

Next Up: Surgery Soon

December was pretty hard, but I kept on being able to live my life. Like, mostly at least. I was so fucking tired. I rested more, slept more, listened to records more, stared out the window more. January wasn’t easy, but it was worlds better overall.

​​The cards, the pictures and drawings, the music, the letters, the mixes, the QUILT, the care packages, the CAKE, the flowers, the food delivery. Truly, you all sent SO much love my way. I am staggeringly lucky in the people that I know and the generosity and care and affection you’ve extended to me. ❤

Onna came to visit, my brother came to visit, Bridget came to visit, Erin came to visit. Amanda went with me to a bunch of appointments and Sarah was on-deck as backup. I was extra careful with wearing a mask and washing my hands. I spent hours, days, really, on the phone with insurance. With the help of steadfast friends and literally 910 lbs. of dry ice delivery throughout 14 weeks, I kept my hair.

So when I look in the mirror, it’s the version of myself that I recognize. And I didn’t have to tell people jack shit if I didn’t want to. I admit that I had — and have — a bit of a chip on my shoulder about not letting health stuff become the most salient thing in my life. I already have a full life and identity in a billion other ways. Though I’m fine with and open about cancer stuff, it’s also something that I didn’t ask for and just have to deal with. We all have that sorta stuff at some point or another. I’m still me.

Each time over the last few months that I was worried that I wouldn’t be able to just keep going a little bit at a time, and living my life? Something changed, or opened up, or happened and it was just, startlingly… OK somehow. All of these bizarre and entirely unpredictable fortuitous and just plain lucky things kept occurring around me in January, in February. One of the biggest: I didn’t end up having to do six additional weeks of chemo that had been on the table initially. I have no idea how or why each of these randomly graceful things happened, but I’m thankful they did, ‘cause as hard as some pieces have been, I’ve been liking other things going on in my life. Which makes it tricky to think about putting parts of it on pause for a minute. But, priorities!

This coming Wednesday, March 8th, I’ll go in for surgery at Northwestern and expect it’ll take 4-6 weeks to recover. I’ll spend the first week here in Chicago, then head back to Ypsilanti around March 18th for a couple of weeks. My Chicago folks have had my back all the way, but they deserve a breather too!

For the first few weeks, I won’t have much use of my left side, so I’ll need a hand with some things in Michigan – mostly help walking my mutt Chewy and a few food drop-offs. If these are things that you feel like you could lend a hand with, my friend Onna has updated a MealTrain with some sign-up slots (also with a few things for that first week in Chicago).

Once I’m back in Ypsi, if you’re interested in swinging by for a chill-hang, dropping off some takeout, going for a walk, or whatever, hit me up! Looking forward to being a bit closer to so many of my Michigan loves for a bit. And the outcome of the surgery, well, I’ll be relieved to be one more chapter along on vanquishing this cellular malfunction. Little by little, getting there, with all of your help! ❤

The Plan, At Least Right Now…

Still have my hair!
*Weird lighting not a side effect, just my window

Hey All,
I have a lot more thoughtful things to say, but realized in recent conversations that I’m halfway (or close to it) through chemo and haven’t shared some of the basics of what my situation/plan is. I’ve been so IN IT that it’s hard to keep track of what information I’ve shared and what’s just hanging out in my head*

First, a few things, some of which I included in an earlier email:

  • Yes, this is a recurrence of the same cancer that I had seven years ago
  • It is triple negative and inflammatory (wasn’t inflammatory last time, just to mix things up and keep it exciting)
  • Blessedly, the scans of my brain, lungs and rest of my body are clear (!!!)
  • I am in great hands with Northwestern’s Oncology staff; the prognosis is good; the intent of treatment is to cure
  • From all signs so far, the cancer is responding very well to treatment
  • I’ve kept my hair so far (though my left eyebrow is making a break for it) through a process called cold-capping. I don’t look as different as you might think, though I feel approximately 3,551,314 years old a lot of days

So what’s the plan here?
What does the map look like?

Each Thursday since the beginning of November, I’ve been receiving weekly chemo (Taxol, Carboplatin), infusions with immunotherapy (Keytruda) added in every third week. This will continue through the end of January. Then, I’ll have scans that will help my doctor assess whether or not to add in two additional chemotherapy agents in February. If that happens, those infusions will be every three weeks.

Whenever I’m ultimately done with chemo, I’ll have a few weeks to recover, and then go in for surgery. I appreciate any and all surgery advice from those who’ve had mastectomy or top surgery. I’m humbled and honored that there are folks who want to share their experiences with me! What’s planned for me is a bit different, but I’m sure that a lot of the tips will still be helpful.

I’ll recover from the surgery for 4-6 weeks (likely in Michigan, I have more helpers there), and then begin daily radiation back here in Chicago. My best guess is that radiation will be for 5-6 weeks, though the nurse has said we’re too far out to really start talking about that yet. That will take me through late May or early June.

Provided that all of that goes smoothly – I’ve learned not to get too attached to a specific timeline – I’d officially be done with the bulk of active treatment in June, with immunotherapy infusions continuing every three weeks for a while. That’s easier to schedule, though, as it’s just a few hours.

Great, let me write all those dates down on the calen — oh…

Of course, plans can change any step of the way. Some days I feel totally capable of doing this; others it feels overwhelming to stare down another six months of treatment and who knows what side effects. Looking at a new year hits differently when you know half of it will have to be organized around a treatment schedule.

Still, I am thankful there is treatment, I am thankful I have access to it, and I am thankful for my body’s capabilities to heal and just be, even on the rough days. I hate having to go through this again, but signs and tests point to my body having healed remarkably well from 6-7 years back.

I continue to be immensely thankful for the notes, calls, funds, care packages, treats, and love you’ve all been sending my way. It definitely helps me keep going.

How to help

My dear friend Onna created a signup for reaching out during the winter doldrums, and it’s been a really lovely way to have an excuse to (re)connect with folks! No pressure or expectation, but if you’re feeling like you want to catch up, text/call me anytime or sign up on the list! Also, if you are generally a night-owl lemee know. Sometimes the steroids keep me up and you can ask me dumb questions into the wee hours of the morning, if that’s entertaining to ya.

Please keep sending me and Mr. Chew all the feelings, vibes, spells, prayers and whatever you can, we appreciate it and we’re sending love right back out to you all!

Grace in the Midst of Grief

Astonished. I honestly can’t even believe it. Still, after a few days of having the kindest notes and texts roll in, the cutest animal pictures and videos, the most heartfelt expressions of affection, the offers of practical support, the gift cards, the offers to drop off food, the sharing of personal stories of your own hard times and what got you through.

The sending of love, of care, of prayers, of spells, of intentions. The out-of-the-blue reassurances that something I’ve done or said or been a part of has been important to you. It’s hard to wrap my brain around the sheer outpouring of support, the amount of energy (or however you envision whatever that thing, that force is) beaming my way. A deep and expansive blessing. 

And then, of course there’s the money. Which, I admit, can sound and feel totally crass. (And thank you, Onna, Amanda, and Jo for actually making that GFM part happen!). But, we all know that in our current country and medical system, that it’s truly a concern and money is a potential buffer. Even with insurance.

I’m still just now paying off debts from going through this seven years ago (it me!). Thankfully, my insurance is supposedly better this time, but I won’t really believe that ‘til I see it. I know more now about all the assistance programs nobody tells you about and aren’t easy to find, so hopefully that knowledge helps too. 

Really, it’s what all of your generosity represents to me. That’s what has me so overwhelmed with thankfulness and gratitude for knowing so many amazing, giving, loving people. Despite the cruel bad luck of cancer, I am immensely lucky. I already knew that, but I do think it’s so valuable to be reminded of that at a time like this. I am deeply humbled. 

Things still feel so brutal, and scary, and sad. Some of the supports I thought I could rely on have already fallen away, and I’m only six weeks in. AND, at the same time, so many more have shown up! I know I am held up by my community. I am loved, and in a way it doesn’t even matter if I deserve it or not. 

It’s grace. It’s the closest word I can find. Not in a religious sense, but in a “we take care of each other,” sense. In a way that gets at something that I kept feeling an reminding myself of seven years ago, and as I was healing:

“You’ll be given love
You’ll be taken care of
You’ll be given love
You have to trust it

Maybe not from the sources
You have poured yours
Maybe not from the directions
You are staring at

Twist your head around
It’s all around you
All is full of love
All around you”

Of course, I couldn’t include a Bjork song without sending it out in honor of sweet Jingles, aka Ayron, who is dearly missed. These last few months sure have been harsh to so many folks I love.

Thank you for being my love(s), for showing me your own strength in your generosity of spirit, for being brave enough to love, for continuing the circles of care we provide for each other. I cannot even begin to express how much this means to me, but this is my attempt. SO much love to you all. May we face the hard things together. 

The Intent is to Cure: Or, How to Lose Your Mind in Six Weeks

Six weeks ago yesterday I got the call from my doctor. “I’m so sorry,” she said. My stomach turned, and my road trip car-mates just heard me emit a long, reflexive, “Fuuuuuuuuuck.” “I’m so sorry for using that word,” I backpedaled. “No, no, that about covers it,” she countered, “that’s an entirely appropriate response to something like this.”

Seven years ago I had breast cancer. It changed my life in innumerable ways, some of which I’m thankful for (a few even feel like real-deal miracles!), but many for which I am still not. Not everything has a silver lining, even when you’re a pretty positive person. Even when you’ve made it a practice to try to see the good.

If I made it three years clean, my chance of recurrence went down; if I made it past five, it was almost nil. Only 5% of the people in recent studies of triple negative breast cancer had a recurrence after 5 years. My scans in January were clean, my bloodwork in July was fine. And by mid October, I was staring down the barrel of recurrence.

“You’ve done absolutely everything right,” my oncologist assures me, “sometimes, unfortunately, this just happens and we don’t know why. But we can treat it.” It just happens sometimes. I’m sitting on the table in the exam room, my boyfriend Jonah in the chair beside me. I’m looking over the papers with my treatment plan. There’s a checklist of what the stated goal of treatment is, and the box that’s checked?

“The intent is to cure. ☑”

Okay. Okay.

October through November is a flurry of action, of calling and recalling, of checking cancellation lists and checking again. 50+ phone calls, 20+ voicemails, 85 emails, 40 MyChart threads, 9 scans, 2 biopsies, 19 Drs appts, 3 phone appts, and two Zoom Dr consults – one where I had to drive across state lines back into Michigan to be legal about it all. 364 miles driven for appointments, 10 ice packs of various sizes acquired (incl. mittens, booties, calf wraps, and ice helmets), 6 dry ice suppliers called, 280 pounds of dry ice delivered and schlepped.

We get the scans scheduled, the various appointments. So many calls and emails and MyChart messages. Jonah takes lead on reaching out to the oncology social worker, and his knowledge of that side of how things work comes in handy daily at this point. He’s the one who knows where to look for financial support, who walks me through my Advance Directive/Power of Attorney paperwork. Who knows where to apply pressure in this system. I’ve been my own advocate before, but this time will take both our combined powers.

But we get in for things, and we get in fast. So much so that I start chemo less than four weeks after my diagnosis. If this type of cancer is fast-moving and aggressive, then we will have to be too.

This past Friday, the day after Thanksgiving, I did my fourth chemo (out of at least twelve, TBD), on the exact date my first body/brain scan was initially scheduled. Even with orders marked as “urgent,” we wouldn’t have gotten things moving without both Jonah reaching out to the social worker and me and the nurse calling each and every morning for cancellations.

There is so much to do. So much has already happened. I’m looking ahead at 8+ more weeks of chemo, a pretty intense surgery and recovery, and then radiation. It’s going to be a long haul of at least six months, likely more. And so I need help.

I hate asking for help. It’s something I learned to do better last time, but it still doesn’t come easy to me. So, my dear friend Onna made a wishlist and a GoFundMe for me. What I can use the most, though, is love, and encouragement, cards, notes, general support.

Send me your good vibes and your healing thoughts. Beam me love with intention, hug a tree for me (I’m looking at you, Laura!), gaze at the sky or something unusual in nature and think of me. Send me a song that soothes you or fires you up, or just makes you thankful for the weirdness of the world.

Whatever it is that you do to call in or send out healing energy and strength – I’ll take every little bit of that I can get!

A Conversation About Big Stuff, aka Lots of Swearing

Misty Lyn and I have been in overlapping-but-not-quite-totally-the-same circles for the last decade plus. I think I first met her waaay back in the Elbow Room/Dabenport days.

We have a ton of shared friends, and in like 2008/9, when I was involved in helping organize some fundraiser shows and stuff for one of my fave orgs, 826michigan, we crossed paths here and there again, too. And then, of course, at Old Town.

It just kinda kept happening, and I’ve glad our orbits have overlapped a little more in the last few of years. It’s been fun to see what she’s up to, what she cares about, and what she channels her energy towards — in these last few years, that’s been photography and documenting the River Street Anthology in particular.

She’s turned those photo and capturing skills to her own project this year too, in the 52 Portraits Project — a series of portraits accompanied by extended interviews with various women, set up in podcast format.

It certainly feels humbling that she wanted to spend time chatting with me. I hope I had at least a little insight on navigating difficult times, or at least that listening to this makes you laugh a little bit.

And lordy, I had NO idea that I swore so much when talking about intense things, but I guess that’s just what I do now (so NSFW, yo!). Special audio appearance by Sparky, oops!

Here’s to stories, to reflecting on the long haul, sharing them, to learning and trying to connect to each other through them – in whatever form they may take.

Thank you, Misty, for all that you’re doing, and for taking the time to chat. ❤

 

 

You Are Here: Spring to Spring Side B

You Are Here: Spring to Spring Side B

I wrote this in mid April, right after Side A, and was waiting for some space to go back and take a second look/edit.

Got caught up in a celebration of spring and friends and my birthday (which felt wonderful, fun, life-affirming) and then in quick succession, the death of a friend from cancer (which felt sad, gutting, terrifying, complicated).

But it’s time to flip things over to Side B… even if it’s a little later than I’d figured…

February 2017

You are here, this is one of the first shows you’ve been through since treatment ended six months ago. It’s harder to navigate shows with lots of standing. Walking is no problem, but your legs start to burn if you’re standing for over 20 minutes. The nerve damage from the chemo is still a daily frustration. It’s getting better slowly, though, certainly in your hands you can notice improvement. You can button buttons better again.

You’ve been back to a full-time work schedule for a month, though that’s more out of economic necessity than really feeling like you have the the energy to do it. All of the rehab and PT and working out and walk-a-lot-each-day-but-not-too-much takes a lot of other energy.

You joke with your doctor that you are the first person to use a Fitbit in order not to walk too many steps. You tend to get excited when you have energy and lose track and why not walk to work AND walk home? And then a few hours later your legs are on fire at 3am.

You’re doing all the things you’re supposed to do, and frankly you’re kind of tired of doing so much and feeling so stuck, exhausted, and still looking like a downy baby bird with no eyebrows.

But still, you are trying so hard to make room for joy. To save some energy for the people and things you love, and the reasons you’re excited to be coming out of this weird treatment cocoon.

There is this band you’ve loved since you were like 18. You were obsessed, when obsessed meant more than just heading to YouTube, when it meant finding some way to get some record or even a friend handing you a VHS tape. They’re going to play and you’ve never seen them live so goddammit you ARE going to be there.

You know it will be packed so you go early. You wear sneakers (ugh!) so you can stand longer. Your friend Greg is there and thank goodness he and your husband can hang out in a decent spot, because every 20 minutes you have to go sit down on a table of very expensive t-shirts. But still, you do it!

And The Mummies finally play and are great and fun and messy and it feels so good to be there in this place. You see people you’ve known since forever, and people you’re just getting to know. You make jokes but also still feel incredibly awkward, like a foal who can’t get its legs under it.

 

March 2017

You are getting your legs under you. Through a friend’s incredible graciousness, you get to see Patti Smith (you get to sit for that one). You get to see PJ Harvey.

View this post on Instagram

loved it at 17 yrs old/love it now. grateful ❤️

A post shared by mariah (@listentothedistance) on

 

You know you are getting stronger. You can walk farther, but you are still taking a LOT of medicine for pain. Your monthly supply of pain medicine is a full two of these bottles — wide as a can of pop, but taller — pint glass for size.

 

IMG_0239

 

 

 

May 2017

You are here. Your birthday! So many lovely friends celebrate, and you look around at the greenery slowly revealing itself and the life people have bought and brought you, and you think “abundance” and sigh and feel grateful.

View this post on Instagram

🎉plant party! 🌱

A post shared by mariah (@listentothedistance) on

You keep trying, and doing, you keep working.

 

April 2018

You are here and you are standing.

You are in this same place you were in just a little over a year ago. There are so many people, all crowded in. You think about the amount of medicine you were still taking a year ago just to be able to stand for 20 minutes at a time, and how now it’s less than a quarter of that.

You are here, but you have gone away on a trip and come back changed. Like some bizarre time travel Einstein shit — everyone but you has been experiencing time in a different way — all while you’ve trekked across the galaxy. It took you one year, but them 20. Or is it the other way around?

To everyone else, you were standing still — slower, even — resting, but there were so many things that shifted — things you’d thought were givens.

You move with your friend and your partner towards the stage, the band is starting. Your partner disappears into the crowd completely. No trace. That used to be your move. So many things have changed, roles flipped, patterns shifted, with new things to figure out.

You stand at the back of the crowd, you spot some folks you love but mostly you just focus on how your body feels the sound. You feel warm and thankful and alive. You don’t need to keep finding places to rest as much anymore.

Here you are, standing on your own two feet.

 


 

 

 

 

Back to it: Water Main Breaks, Power Outage & All

Earlier this week, I was still so tired,  but it felt like my brain was waking up a little more. I began noticing more and more (not my own!) typos in anything I was reading online. My first thought — “does this mean my blood counts are back up?”

Luckily, I found out late Tuesday that was the case! My white blood cell counts bumped back up after two weeks on-pause from treatment, and were over 100 again, so we could start a new chemo regimen yesterday.

For now, the plan is to switch from a lower dose every week for 12 weeks (only got 2 weeks in on that plan) to a higher dose every two week, with a neulasta shot to give my bone marrow a nudge between sessions. I gave these shots to myself during AC treatment in Dec/Jan anyhow, so I’m used to doing this. There are different potential side-effects, but so far, it’s not terrible.

So, I think yesterday’s chemo session was 7/10 instead of 7/16, but I’ll know more certainly about that next week. I’ve been told not to think of the end-date as set in stone at this point. This entire thing is a constant lesson in not getting ahead of myself.

Yesterday was a record-setting day — from showing up to heading home, it ended up being an eight hour day. WHEW! No wonder both J and I are worn out today!

It was intense and hectic for everyone from the patients to the support staff to the docs yesterday — a water main broke on the top floor of the Cancer Center, and water leaked down, down, down… shorting out almost every single outlet on the floors below except for the “emergency” outlets.

This meant no computers except laptops charged off the emergency power strips, so all of the steps that usually involved scanners and check-in, etc. were on printouts. Even my medical ID bracelet was sharpie-on-plastic DIY-style.

Jeremy’s exact words were “this is like a hospital in a movie!”

You know when you watch a TV show and a hospital is all crazy with bonkers-overflowing waiting rooms and a man is walking around in circles for an hour with the most EXTREME hiccups you’ve ever heard (sorry, mister, everyone totally understands that might just be a part of what you’re dealin’ with), and there’s an older gentleman who REALLY wants to play a game on his phone but doesn’t understand how to turn the sound off, and then the nurses are running all around calling folks’ names over and over because there are just SO many people? Bingo.

Once we got back into the chemo area itself, it was relatively chill, but even one of the nurses there admitted he was kinda waiting for things to turn into a zombie movie or something. If I was a rich woman, I would’ve bought an after-work round at Casey’s for every single person on duty at the CC yesterday.

But the bottom line? Dang do I have admiration from every single staff person who showed so much professionalism. It was pretty amazing, the level of not only grace, but graciousness-under-fire that I saw each step of the way.

On Pause…

On Pause…

The last two weeks I’ve gotten sent home from chemo 

…due to low white blood cell counts. The first week, I tried not to let it phase me — it’s a pretty common thing to have happen. But then yesterday, we got my bloodwork results, and despite no chemo the week before…my counts were even LOWER.

So… that part isn’t as common. But it isn’t totally unheard of. It just means my body metabolizes Taxol very differently (over a longer period) than other people. My doctor has seen it before.

Can I say here that I am really thankful I have a super-smart doc who also has enough background and clinical experience to have seen/navigated something like this before? My Dr. is funny and humble and whip-smart and just very real and human. It’s not often you find all those things together in one doc.

We’ll do some more bloodwork next week and then hopefully restart a different chemo plan.

It’s a little weird to think you have this idea of what the next few months will hold, and then be in limbo to go into something different. But really, aren’t shifts like that just kinda, well… life?  A good reminder to not get/think too far ahead of myself, for sure.

 

reallife
From Natalie Sun’s Texting with Cancer

 

The good news

…is that although my immune function is still pretty low, and I’m still anemic, I’m not on as harsh of lockdown as I had initially put myself on. Still, given that 2/3 times I’ve had “moderately” low WBC counts I have picked up a cold during 1/2 days at work (despite obsessive hand-washing), I will probably still limit my exposure to spaces where the general public is hangin’ — which is kinda a bummer ’cause I find a weird comfort in grocery shopping. And as someone who geeks out about sound and images and media, I know tonight’s Nerd Nite with Ross and Martin is going to be a really fun one (special thanks to Sara and Elyse for holding down the fort on the NN-organizing front).

And I really miss shows. I’ll definitely appreciate being able to go to the next one I’m able to. For now, I’m just taking the time to revisit my records (thankful for that comfort), and though conceptually, reacting to each is an appealing idea, I’m just gonna keep my own rediscovery low-key.

The even better news

is that although it sucks to feel so wiped out, the theory goes that if the chemo is being THIS hard on my own cells, it’s also thoroughly kicking the ass of any sneaky cancer cells still hanging out and hiding anywhere. And that is GREAT, since chemo is really the best tool we have right now.

Sparky Coupon Report

The last week-and-a-bit has felt kinda tough. On top of all of the limbo and house-arrest and unknowns, my best-pup buddy and constant companion Sparky Coupon got a little too wild jumping around and hurt his tiny back.

The big relief is that he’s going to be OK, but he has to spend a lot of time forced to rest in his crate, and the medicine he’s on makes him sleepy. It’s hard to really let him know that even though it sucks right now, he will feel SO much better soon.

So, really, as I type this, I’m thinking — Sparky’s situation is kinda like mine, huh?


 

GIANT thanks to everyone who has sent along a recent note, something to read, or a little pick-me-up present. Again, I continue to be absolutely both humbled and held up by all the expressions of folks’ caring. It’s so amazing that I asked Jeremy yesterday if he was sure he didn’t bribe everyone to be so sweet to me! ❤

Related/Coming Soon:

pic of something amazingly rad from some of my girl-gang…