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The Long Haul
“It’ll take a year, maybe more,” my doctor said during one of those first pre-chemo visits. I heard her then, but it’s fair to say that I didn’t fully understand her. I counted out the months of active treatment to pace myself, to reassure myself that by the time those 8 months were over, it would be spring.
I imagined spring and summer as the finish line, and while in one way they were, I didn’t bother to think beyond that. I don’t think I could then, in order to focus on making it to the point where the sun was out and the weather was warmer and I might have some eyebrows.
I didn’t really think about the fact that any treatment harsh enough to make those eyebrows and every single hair fall out — to make it grow back completely different than ever — curly and thick and black and white — would also probably be harsh enough to knock me back for a bit beyond.
Recovery is difficult in different ways than treatment. There is relief, sure — SO much relief, but there are also realizations of all of the things I want to do and make and be, people I want to see — an urge to make up for lost time. But when you can’t rely on your body to be the same day-to-day, it’s harder to use enthusiasm alone to propel you forward. It’s harder still, with the lingering heavy fatigue, to fight through the fog and back to the focus that’s felt so comfortable to me in most of my life.
So, on the one hand, my gratitude for surviving makes my brain spin around and around with things I want to do. On the other, my body is just not ready to do most of those things. I still need a lot of sleep. My hands are still healing from nerve damage. I can button buttons again, but trying to play bass or violin a month ago was an exercise in frustration — I felt downright toddler-tantrum-y when my hands would not do what I wanted them to. They are getting noticeably better now, but it led me to abandon working on anything music-related for a minute.
I can walk more and more, but there are days that I am extra clumsy, or nights where my legs gnaw and burn so badly that even after taking any medicine I can, stretching, doing yoga, I can’t sleep. There are many mornings that I feel hit by a truck.
There are also the occasional scares, since any new pain that lasts longer than two weeks needs to be thoroughly investigated. I went through a series of bone scans and tests last week and it’s hard not to get freaked out. But everything checked out OK, and it wasn’t, thank god, a spread of cancer.
I keep at the walking, yoga, sometimes swimming. These things are helping, I am making advances, but sometimes I feel sad when I realize how small these steps are. It felt like a big deal the first week I had three days in a row where my legs didn’t hurt going down stairs. Now I’ve gotten to four days in a row. It’s so very gradual. I am working on patience.
I am thankful to be dipping my toes back into what feels like the “real” world — the world where I can see friends a little more, do some things here and there. Work more, even if I can’t quite swing full-time yet.
I am also thankful for you friends who have kept me in your thoughts. Please do keep reaching out. Even if I am tired and can’t respond as quickly as I’d like these days, please do keep trying. I’m trying too. I’m getting there, so slowly.
I’ve long been drawn to songs about truckers and trucking, from Convoy to Phantom 309 to Little Pink Mack, I’ve long been enthralled with the idea of the road life and the long haul.
It’s safe to say this process is a longer haul than I realized.
But I’d rather have a long haul than no haul at all.
It’s been a minute, I know…
…the biggest news is that last week I had my VERY LAST (I hope forever) radiation treatment.
Everyone was asking how I was going to celebrate, and my most common response was to laugh and say “with a nap!” — which is definitely funny, but also the only thing I could imagine doing, with how tired I was. And with how much my freaking legs hurt.
And so, I wasn’t at all surprised when immediately after ringing this bell, I cried out of sheer relief and then Jeremy and I both crashed out on the couch for a couple of hours.
It was a long haul. I’d started an entry about that very fact, but then abandoned it. Because I was so tired. I’d started to write about the different ways I was measuring time and how strangely it was moving, but I abandoned that too, because I was so, so tired. These are things I might share eventually, but lord knows there’s some major typo-checking and copyediting that my brain just wasn’t up for then.
It was the type of tiredness that makes you cry simply because you are exhausted and you feel like a mess and you can’t imagine NOT being exhausted even though you know logically/abstractly that at some point, yes, you will feel better. You know certain things could be true, but you can’t quite grasp feeling that they are true. I imagine that new parents understand some of this type of exhaustion.
It’s like chronic pain, or depression — how when you are really in the midst of them it feels so difficult and far away to imagine NOT feeling that way.
The radiation was so exhausting at the end — moreso probably because it came after months of chemo (anemia! neutropenia!) and left me with some nerve and muscle damage in my legs that I thought should start to get better but instead was just stubbornly hanging on, interfering with how restful my sleep could be and my ability to get around.
Oh my goodness am I ever thankful for these treatments and all the research that went into them and the simple fact that they exist (protocols this-often successful simply don’t exist for many, many other forms of cancer), but whoa, man do I also realize that they are very hard on the whole body.
It will still BE a long haul. I may be reaching out to some of y’all who offered help waaay back when. As relieved as I am to be on the upswing (SERIOUSLY, SO RELIEVED, GUYS), it will take a few months to get more energy back.
Drs tell me most people take about 8 weeks post-radiation to feel at about 80% energy. This actually sounds AMAZING to me at this point, since the last few months I’ve felt like I’m at about 25%. Today, after sleeping 12 hours fairly restfully, I feel at about 30% and that feels AWESOME.
Cindy Sherman
If it weren’t for the cancer part, I could probably get into this whole wig thing with a sort of Cindy Sherman approach.
There are endless reasons to think about gender and performance and its construction throughout breast cancer and its treatment, and every single day when I figure out what the heck is going to go on my head — short hair? a hat? long hair? — or have to take a few minutes to draw in eyebrows, there are at least 5-10 minutes I’m mulling all of that stuff over.
And there are, of course, lots of opportunities to think about ability/disability and those things which are temporary vs. more longterm. There are ways to put my own experience within a larger context that acknowledges how lucky I am in so many ways.
And yet, there are still moments, hours, and days, when I still get stuck in thinking “yeah, this sucks.”
And I know it will suck less soon — I’m less than 2 weeks from my last radiation session. But at the moment, I’m worn out. I’m glad it’s the weekend, because at least I don’t feel like I should be doing more things I don’t have the energy to do, and I get a two-day break from the radiation table.
photo: Untitled #88. 1981, Cindy Sherman
Nachos, Cake, Personal Practice & Grown Up Shoes
I’m not doing as well with synthesis in writing these days as my brain feels so tired, but I think keeping up with just jotting some things down is still a good practice. And sometimes personal practice is all something needs to be, and if it serves another purpose as well, then great!
Ever since I first was smitten w/this lady’s account/idea, I check in with it as a good reminder of the importance of 1) joy 2) movement (esp. when I don’t feel like it) 3) literal personal practices, whatever forms they may take
I had a wonderful birthday weekend — getting to see more friends than I have at one time for months. Nacho bar, a fantastically creepy piñata, some of my favorite small friends running around a yard that I’m really gonna miss (memories of when my friends first moved there, 10+ years ago), a super-fancy tea complete with rad lady posse and vintage touches, a downright magical cake, a friend in town from Chicago(!), a last-minute chance to see a different friend as Edna in Hairspray(!) and SO many hugs and thoughtful notes and gifts. Thank you, friends — you know me well and that makes me happy!
But although it made me happy, I kinda had a crash on Monday. Everything hurt. I’d say that these days, usually about 1/3-1/2 of me hurts, so this was a definite uptick. Hard to tell if or how exactly I overdid it. Was it just the level of activity? I kept things pretty chill — even took a 2 hours nap on Saturday! Was it the hour I spent putting in seedlings on Sunday? Was it just some random decision my body made? Was I just suddenly more aware of each ache because the “you’re going to feel SO tired” effects of the daily radiation was finally kicking in? The Drs. warned me that would happen around 2-3 weeks, but this isn’t how I thought it would feel.
It’s hard to decipher The Mystery of Feeling Hit By a Truck oftentimes.
Still, after a few days and all sorts of approaches and tweaks (acupuncture, rest, medicine, stretching, tons of sleep, nutrition changes), I’m feeling about back to current-normal. Which isn’t like, an ideal normal, but is still a “much better, OK I feel like I can handle some more of doing life things” state.
And there are more good things! I just noticed yesterday that my eyelashes are starting to come back! Although I don’t want to be overly ambitious, I’ve managed to begin some modest garden work for the season.
I had held off buying any sandals for the summer, scared that chemo was going to make my nails fall off (gross, I know, but it’s a common thing). Luckily, that is NOT a side effect that got me, so I excitedly bought a very grown up (VGU) pair of sandals. VGU means I paid more than $25 for these shoes. This feels weird for me, but I understand that now that my legs and knees feel like those of a 80 year old (No offense, octogenarians — that’s how my PA actually described it!), I should probably be wearing better quality shoes for awhile.
Oh! Also have some new hair — currently blonde until I reach the buzzcut stage, which I’m guessing will be somewhere around August or so. Fingers crossed!
Trying/Resting
I really, really enjoyed that few-week break in treatment. It was so fantastic —not having as many appointments or lots of things each day reminding me of all of the logistics and administrative necessities of treatment. Even more important, feeling better was so welcome, as I began healing from chemo.
During the first week or so of radiation, I wasn’t feeling much extra tiredness from treatment — it was mostly just me reminding myself to be patient with the after-effects of chemo.
A lot of things are getting noticeably, mercifully better. This last week I wore contacts and rode the bus for the first time in six months! I mean, technically, I guess I did both AT THE SAME TIME, though it’s not like I put the contacts in while riding the bus or something crazy like that.
It feels super weird for such mundane things to feel like milestones, or at least worthy of extra notice and excitement, but they are. And I am really so, SO thankful for my healthier eyes, immune system and skin.
It’s just that it’s easy to get a little discouraged, because there are a lot of other things that will take their own sweet time to heal, too. It’s tricky to balance my excitement at the marvel that is a healing body and desire to do normal-life-things with the sheer crappiness of how I still often feel physically.
Should I push myself more? It feels good to have goals and good to meet them. Will that make me feel better? Should I rest? Wait, wait, was that TOO much rest? Was that too much pushing? Ok, cool — finally found some other forms of exercise that feel good or, at a minimum don’t hurt. Oh WAIT! I have to stop doing that one for a few weeks because of treatment? Ok, never mind, I HAVE NO IDEA if I’m on the right track here.
I’m generally not a neurotic person, but man, the conflicting feelings about this energy ebb and flow make me feel like one.
Radiation itself feels like such a daily routine at this point that other than on the days (today, whew!) when I get stuck in an appointment for waaaaay longer than I would have expected (all ya can do is read and roll with it), I have to remind myself that yes, this is still totally active treatment.
Still, I’m getting closer to completing even that, little but little. Just about one month more to go, and I’ll be there. I just have to be patient with still feeling kinda fried and tired, and taking the necessary breaks and breathers as I get there.
So, thanks now and in advance to all the folks who have been kind to me even when I’ve seemed slow or not-100% there. I’m trying. But, ya know, like not TOO hard, like bad-hard. Ha! Trying and resting, trying and resting.
today I:
+ 
- got un-cyborg-ed and stitched up
- learned how to breathe in tune to lines & diagrams on a weird oculus rift-like headset/eyepiece with a strange bulky snorkel thing in my mouth
- got several CAT scans
- realized the rev-up of the CAT scan machine sounds kinda like the DTW airport shuttle
- got marked up with sharpies and stickers all over
- got hiccups (2x)
- got 3 tiny stick-and-poke tattoos
- wrote some emails
- chatted about music formats and libraries and records on the radio
- snuggled with my dog
- ate a delicious dinner
WHEW.
insurance interview
staff: “Have you retained an attorney for your case?”
me: “Well, my diagnosis is breast cancer, so I’m not really sure who I would sue? God? Nature?”
staff: “Good point.”
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.
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.
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…
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.
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.
what's up with mariah 