Lashes, Haircuts, Time and Healing…

Lashes, Haircuts, Time and Healing…

My eyelashes are falling out again. My doctor said that that was pretty normal in the year after completing treatment — that she knew one woman whose lashes had fallen out and grown back again FIVE(!) times in the following year. When my eyes get all irritated a few times a day, it’s just a “hey, stop and reflect for a moment” reminder.

Some days it is reassuring and feels triumphant to think about where I was a year ago. Most days I feel thankful, but it’s an exhausted-kind-of-thankful. An “oh my god, I just ran a marathon and you’re telling me I have to keep walking?!” kind. I absolutely adore my job and everyone I work with and all of my friends and all of that, but there’s a part of me that just wishes I could go live on a beach for about a month, and then come back, feeling more ready for the rest of the world and life and weird times that will require energy, resistance, defiant joy and transformative love each day.

How do people do this — come back from the strange semi-there world of cancer and treatment and recovery — if they don’t adore their job, their life, the world and people all around them? It’s hard enough when so many of those factors are so right that you feel like you’ve won the work/friend/community lottery.

Some days the sadness and anger bubbles alongside that thankfulness. One of my guiding reassurances since my teen years has been that thankfulness crowds out a lot of unpleasant emotions. That’s true, but it only seems realistic to recognize that those other things also have a right to exist, to be felt, to be processed over time, to be channeled (oh, oh, I am SO practiced at channeling feelings), and perhaps, eventually to be let go.

That is part of the fundamental work of healing, but for me — someone who has always taken a long time to process things but a short time to check most things off a to-do list, — it’s disconcerting to realize that that healing has a longer timeframe than I had initially thought or that I would wish it would.

Synthesis is still more challenging than it used to be. Energy/fatigue is still a challenge. It takes me at least three times as long to do most things as I think it will. I know it will continue to get better. When I look back, I can see it getting better, but it’s hard to let go of the fantasy that life after treatment bounces back quickly to what used to feel comfortable and normal. I imagined a different timeframe. I needed to believe in a different timeframe in order to meet treatment with the attitude I wanted to have. My stubbornness/tenacity can be both a gift and an additional source of frustration.

I am changed in ways I did not want to be changed. Besides the big things, the scars and the way my body cracks and pops eighteen times when I get up or sit down, my skin is different now. My immune system still has some healing to do too. I can’t usually sleep on my left side without this weird-and-kinda-annoying-but-nonetheless-helpful pillow thing. But U of M has pretty amazing resources, doctors, and occupational/physical therapy folks with an amazing breadth of knowledge to help folks with quality of life issues after treatment. And for that, dang am I thankful.

My neuropathy in my legs continues to heal, slowly but surely, and I’ve gotten help for some other post-treatment issues/challenges. Through the LiveStrong program at the local Y, I can really see advances in my strength, which is heartening — especially on the days I feel frustrated. And most days, walking down steps does not hurt at all anymore, which is a huge positive too. I can walk to or from work a day or two a week, and my doc says that my daily step amount is remarkable considering the amount of neuropathy I started out with. That’s reassuring, but also just makes me laugh at myself, because I know that part of that is just that I am tenacious (stubborn!), and like clearly measurable goals.

The hair on my head is proving sturdier than my eyelashes, and is wonderfully curly and getting healthier and softer. It’s odd that it’s so dark, but I dig the Rogue/skunk stripe at the front. I just had my second haircut, which doesn’t even seem real.

haircut buddy

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Time is still moving strangely, but slightly less so with each week. Instead of barely making it through a few hours of Tiny Expo post-chemo-sesh, this year I was actually able to be more involved again in the planning and execution, and I saw and hugged and helped and chatted with so many friends. Jeremy even unveiled a few new prints, and my pride in his accomplishment and refocusing make my heart swell.

The biggest thing I notice in these last few months? It’s been slow (like me!) and gradual… My own life has less moments of feeling foreign to me, which is, I think, a lot of what I’m learning real healing is about.

 

 

 

 

 

 

The Long Haul

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.

bell

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

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

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!

in the thick of the mess (easier said than done : the essex)

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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!

blonde
my house is messy in the background, but whatever, dude.

Trying/Resting

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.