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!

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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. 

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.

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

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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.

 

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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.

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🎉plant party! 🌱

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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.

 


 

 

 

 

Mixed Emotions Club

Mixed Emotions Club

Yesterday was my very last chemo session (!). I hope hope hope it is my last ever. But harsh as it is/was, I am glad it’s a treatment that exists, and a series of types of treatments that are constantly improving through research. Because even if it is my own last-ever (crossing my fingers for the next three years!), many many more people will continue to need it and be helped by it. People all around us that we love.

I am still kinda in a weird emotional limbo about it. I’m relieved (especially because the double-dose regimen change shortened the total time by so much), but as I get ready to give myself my last bone-marrow-boosting-shot, I’m still not really ready to feel celebratory as much as relieved.

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AMAZING custom jacket (my name is even embroidered on the front!) designed by one of my favorite illustrators, Tuesday Bassen, that some incredibly rad girl-gang pals got for me a couple of chemo sessions ago (thus the tree – it’s put away now, I swear!) It encompasses my heart and gut’s feelings these days, and I’ve finally gotten to wear it on a few sunny walks w/Sparky this week!

 

Although I’m gonna get to see some much-loved ladies over the next couple days, so that may make me feel more celebratory. Yesterday and today, the only thing I have an incredibly strong urge to do is to go sit quietly by the river. Once it stops raining, find me somewhere along the Huron. I used to have this old red t-shirt that said “always a river,” and I wish I still had it.

For now, I am simply exhaling and feeling a little bit of extra peace.

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familiar style/familiar name * last day of chemo

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Yesterday, while waiting for treatment, I went to visit my favorite piece of artwork in the cancer center — a print by the great Ann Mikolowski. It’s a print that I’ve written about privately, but am not ready to share until it feels less raw — a print that has been what I return to, my refrain, throughout the last four months. I think a lot about the Great Lakes and  the ocean and waves. Which, being a long-ago English major, could simply just be the theme of “transformation” sneaking its way in somehow. I don’t know.

I’ll get all the fun side effects this week, but I am already relishing that those may be close to over. After that, I’ll get a few weeks of space to recover from chemo, starting radiation mid-April, going through June every weekday. Still a bit heavy-duty, but not as systemic, thankfully, as chemo.

 

Last night, Jeremy was watching videos, and this one came on. One of my favorite Joy Division songs, and yeah, I admit it, it made me cry — but with hope and with much, much feeling for the whole wide world and how connected it all is, and so very many other things that I can’t even process into words yet. Be kind to each other, friends. Your kindness to me means something every single day.

I have been thinking a lot about why I have harkened back quite a few times to earlier years — to being 18-23 or so — but not even in an overtly nostalgic way. I have some ideas. I’m writing about it to try to figure it out, but in that revisiting (and in the sorting-through-old-stuff that only being house-bound can spark!) I came across a rather emo poem I wrote when I was 19/20. I mean, it’s cheesy, but not bad for a 19 year old! It seemed appropriate, like maybe I was writing it to future-me…

crocusesedited

Loving each and every crocus I see reaching up this week… ❤

 

 

 

Heavy Music, Lighter Times

I hadn’t listened to Heavy Cream’s Super Treatment in a minute, and was suddenly in the mood for it during my chemo sesh today.

All the songs are making me wanna drive around with the stereo cranked. So heavy, like these songs should be. Thumbs up to Ty & the band for producing something that sounds nice and thick and heavy but still snotty and defiant.

Jeremy keeps old Bang! mix CDs hanging around, and sometimes one will be in the car. I love how they are little time capsules of the things that he’s/we’ve been listening to or loved at a particular point in time. Since we’ve been together for almost the entire life of The Bang, 14+ years, there’s a lot of time with touch points in that music.

This last week, I was listening to one that happened to include Joan Jett’s version of Shout — kinda the only version of Shout that doesn’t make me feel like I’m at a wedding reception (way to be, Joan). It’s not like, my very favorite song ever or anything, but I like hearing some different energy in the vocals, and I had totally forgotten it existed.

Hearing it was a welcome jolt and also hearing anything related to The Bang was bittersweet as I had more mixed feelings than I’d expected about the fact that last week, the guys moved out of what had been The Bang! Studio for many, many years. The studio was where I celebrated my 30th birthday. It was something that enabled the crew to built giant sets. I spent some happy time there with staple guns, glue, PVC and paint. I stored merch there for the job I had before going back to grad school. It was a place of grand possibilities, and we finally got access to/could afford it after a LOT of hustle and watching J and the crew build sets and paint outside/in a windy carport in terribly cold weather for a few years.

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A lot of stuff happened there. A lot of friends found space to make music and do things there. I sang backup on a song about pizza, even. It had a good run.

I feel like I’ve been in a sleepy, occasionally frustrated bubble zone for the last two months. Having to settle for mostly sleeping and jotting things down in notebooks for later, catching little moments of the way my brain and energy usually work. I am still myself, but I am a version of myself that is so inward-turning and bit-by-bit and unable to sustain extended focus that it’s hard to recognize it. I’ve always really prided myself on my focus and tenacity in all sorts of situations, but sometimes those qualities have to be set aside for a little while.

80% of the time I’m accepting that this is the way it is now, and the other 20%, a gut level reaction, one that can be accepted but not eliminated by resting, meditating, yoga, and other healthy things… that other 20% of the time, I want to scream and run and dance and jump up and down. I want to crank the stereo and drive with the windows down. I want to turn up the volume on my amp and play along with a song just because it’s fun, not ’cause I’m any good. I want to work on projects and most of all make things. I want to have the actual energy to talk to people and really, really listen and make a plan or two I don’t have to hedge because I might need to cancel.

Those things are still a little ways off, but today I got pretty badass news, befitting of spring, that that horizon is much, much closer than I thought. 

I thought I had 3-4 more sessions of chemo and then radiation. Today, in an act that feels like spring mercy (but is really just based on solid oncologist knowledge and the fact that blood cell nadir was reached a few weeks back), my oncologist went through everything and told us this is my SECOND TO LAST chemo session.

I’m ELATED. This doesn’t mean that the next few days post-treatment won’t hurt or be kinda difficult, but it does mean that mentally, I’m more ready for spring and for change.

Weirdly, I feel more allowing of myself to rest knowing that there is a timeline for the tiredness getting less and less. I don’t know what that phenomenon is, but it’s a thing. I’m totally ready to accept that I only have so much hibernation left. And the fact it’s less than I thought catapults me much farther forward. I thought I was just at the halfway point from our conversation two weeks ago (granted, the visit two weeks ago was kinda bonkers because of the power outage/no computers thing), but I can’t even quite describe the type of relief I feel at not only moving along, but being farther along that I thought. Definitely feels like a sort of grace.


 

We could still use a little bit of a hand with meals through at least the early part of radiation. It will still take awhile for me to be able to cook more (though I made a couple meals during my pause from chemo). Everyone has been so, so very generous so far, so no pressure, but if you want to take some weight off Jeremy and I, there are a few more meal-help sign-up days open through early May.

 

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.

Sleeping, Healing, Waiting…

but god is always laughing every time you make a plan
so you can never really know
and everybody’s gonna tell you something different anyway
they think they know but they don’t

so
if you’re looking over the edge
where the skyline extends
and you don’t see your friends
they were right behind you…

Most of Thursday through Sunday, I was asleep. The time that I wasn’t, I was in a pretty groggy, zoned-out mode. Dumb stuff on Netflix and silly animal pix/videos (for all who sent them — THANK YOU FOR YOUR SERVICE!) and trashy magazines (J managed to find two different Scientology exposés!) were about the level of my comprehension.

Things happening in the larger world are so sad, at such a deep level, and it’s hard not to let that sneak in even a little bit. So many people have so many struggles, from the individual to the structural to the sudden and violent. It doesn’t necessarily make it easier to know the enormity of that, but it does make struggle and heartache and —perhaps — the choice to let that nudge us towards compassion — seem to be a fundamentally human, shared experience and trait, or at least capability.  I don’t know what else to take from it all right now.

In my tiny bubble that I am lucky enough to have around me, I have been cozied up, and the more I’ve rested, the more my body has responded. My left arm is now working fairly well — leaps and bounds ahead of the “temporary TRex” feeling it had through the weekend. Each time I wake up, things are a little bit better, physically. So, that helps!

Jeremy, obviously, is a champ, and has stepped in to anticipate what I might need. He’s back to VG Kids for a part day today, after some extra Sparky care (he’s fine!) this morning.

I keep getting awesome mail/cards from friends near and far, and each one makes me smile. Gorgeous flowers and treats from pals, super-comforting dinners, and care packages that seriously could win some sort of awards for the wonder and joy they provide! Thank you, people I love!

I am intensely lucky.

It is hard, however — a strange weight — knowing that pathology and lymph node biopsy results are still unknown and hanging out there, later in the week.

They told us we’d find out on Tues/Wed, so I’m figuring that really means Thurs/Fri. What we find out from that as well as genetic testing will matter so much in charting the course ahead.

There will be some sort of chemo no matter what, but whether there are more surgeries ahead, and what chance of recurrence might look like (which is so wild to think about when we’re still just getting a handle on treating the right-now-cancer!) is really TBD.

And I guess all of life is really TBD, each day, it’s just an illusion of control that we often have…but as someone who likes to plan, who has been served well by thinking and planning ahead in my life, it’s hard to embrace the total enormity of the uncontrollability, even if I’ve made myself practice that letting go.