Cyborg Day Notes: Norm, TV-B-Gone, more…

Cyborg Day Notes: Norm, TV-B-Gone, more…

Today is pretty good. I’m extraordinarily tired, but pretty good. Yesterday was deal-with-able. Wednesday night was honestly pretty terrible, but that’s over for now.

So, back to today. I’m tired out, but alright, recouping and resting. Since I don’t have too much energy to string things together, but still feel like sharing a little bit of what my experience has been — here are random notes from Cyborg Day, aka port day…

Norm & TV-B-Gone

Sometimes I feel like Norm in this town, but in a good way where it’s not just in one bar. Right when I walked into the bunker-y department of interventional radiology, I hear “Mariah!,” which immediately makes me laugh because who the hell knows me here? But it’s someone I went to high school with. Kinda a comfort to see a familiar face.

The unfortunate flip-side of this encounter is that I didn’t get to actually try out my brand new TV-B-Gone clicker ’cause, I’d be WAY more embarrassed if someone I knew had to fiddle to try to fix the TV. Luckily they were not playing The View. I will show no mercy for turning The View right the fuck off.

However, I did get to catch some truly hideous crafting on the Hallmark Channel. I love making things, and I love enjoying the talents of those far, far craftier than I, but sometimes “DIY” on TV just looks like a Pinterest Board exploded into a bunch of puffy pink scrapbooking stuff at Joann’s. This is what we observed:

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^though my friend did notice that maybe the OTHER Mariah C’s ad was good luck

Actually Getting a Port:

Lights:
For both fertility preservation, as well as my lumpectomy, I took notice — then comfort — in the big ceiling lights, which were pink and shiny on the inside, like they were made of some super-scarce scientific-grade abalone shells. I’m sure it’s just plastic and metal, but they looked like lotus petals of abalone, as I drifted off to various degrees.

However, for this procedure, instead of abalone lights, I see 4 giant/heavy/ deep old-tv-style monitors mounted on a rig that swings/adjusts from above. They are so CRT-looking that it almost startles me a little bit. I have not seen a monitor like that outside a lo-fi art project (shout out to Louis!) in a long, long time.

 

Sounds:
AIR has apparently now become my procedure music. I randomly and quickly picked that Pandora channel a few times ago, and I’ve stuck with it. Mostly, I think, because it’s generally pretty spaced-out and I have ZERO emotion tied to that band or their music. That’s kind of what I want in this type of drugged out haze.

When the nurse/assistant asked “what kind of music do you like?” the question, to me, doesn’t seem quite that simple. It’s more like “what would be somewhat relaxing during this really potentially strange experience that will be happening?” As well as “what music do you NOT want to be tied in the future to this memory of pain or discomfort?”

Then again, I learned during my intial biopsy that it’s better to choose SOMETHING than let the staff pick and…

  1. end up with a lot of commercials (of COURSE my BP is going up, there is a man SHOUTING ABOUT HAMBURGERS while I’ve got this giant needle in my breast!)
  2. End up with some muzak version of FUCKING FIELDS OF GOLD coming on and picturing myself flying into a rage and flipping the damn table. (You didn’t realize Sting incited so much anger in me, huh?)

 

Shelter:
As I mentioned in a previous post, they gently drape a cloth/sheet above your head so you feel like you are hanging out in a tiny little tent — I imagine this is so that although you can feel things going on over by your collarbone/neck, you aren’t as apt to look down and think “oh god, what are you doing to that delicate area?!.

I think one thing that I liked about the tiny-tent, was the sheer gentleness with which they set it up, talk with you, and then eventually take it off.

It’s a good reminder that there can be room for gentleness in most tasks, and that it can help. Even though you are pretty drugged up, there is a lot of weird pushing and things that are not-super-gentle happening too, so that kindness and gentleness is a nice balance/antidote/thing to focus on.

 

…and done!

By the time I was wheeled out of the room, I was still druggy (yet wishing for slightly more drugs to dull the creeping ache), but now a cyborg. I realized that I guess I am still kinda talky under sedation.

As one of the nurses, Jane, was wheeling me out, and I said goodbye and thanked the crew, she remarked “You are so friendly! I bet that serves you really well at the library — you must meet all sorts of people,” but all I could really line up in my head to say was “I guess so! I’m just thankful that’s over — you guys did such a good job!” And now I’m cracking up at how insistently I felt I had to fit in a “good job!”

And they did all do a good job, except for some sort of port vs. needle labelling that the recovery nurse (who I’d met before!) straightened out but then had to label on neon tape with sharpie over my big ol’ bandages.

That night, my bud Vito did the honor of shaving my head. I’d say Tuesday night my look reached peak-cancer-y so far, with my new buzzcut and various small tubes (left for chemo the next day) hanging out with bandages and sharpie labels on my chest. I took a picture for my own posterity, but there’s no WAY I’m sharing that one with anyone else.

That’s too much. I’m just trying to be honest here, but I have zero interest in grossing people out intentionally.

It wasn’t very comfortable to sleep, but I was so konked out, it didn’t really even matter. And I was plenty thankful for the port during the Wednesday chemo sesh. I have a feeling as it heals more, I will continue to be thankful for it in the months ahead.

And that is what I do feel right now, besides tired and sore. I’m thankful. So far, so good. Things will be difficult in waves, but then they hopefully will be easier, just like the rest of life.

I just want to do the most I can (and right now, that’s chemo and related support) to get through and enjoy those better times — hopefully being better for way longer rather than for shorter.

I also know too, though, that there are things to learn and experience and understand in the midst of the rougher times, so I am thankful for those things too, even if I don’t always think I want some of those experiences.

 

Work, Cyborgs, Furiosa…

Work, Cyborgs, Furiosa…

The last 48 hours have been full of changes.

I went to work!

My paperwork processed, finally, to go back to work. So, I was able to go back!

…for exactly ONE day.

But still, it was good! I was also there briefly this weekend for the wonder that is Tiny Expo, but I’ll save that for another post.

I kicked off the day by eating a ENORMOUS donut (thanks to Jody, who probably will never read this), got to catch up with people a little bit, get some good hugs, and go through stuff at my desk.

I got to see some of my favorite people, and also get a sneak peek at fantastic prints  by local artists that will soon be up for check-out. Though I didn’t get to see the master of the Secret Lab, Steve, he left me an awesome laser-burned Secret Lab logo (why yes, I DO keep multiple stuffed elephants at my desk!).

I even admired the new carpet. Yes, it’s mundane, but whatever – it makes certain areas look/feel waaay better, and I care how the library feels to people!

I became a cyborg!

bioniccover

cyborg
noun cy·borg \ˈsī-ˌbȯrg\
a person whose body contains mechanical or electrical devices and whose abilities are greater than the abilities of normal humans

Yesterday morning, I had a minor surgery to implant a “port.” These have changed a lot over the years. They used to sometimes put them in folks’ arms, but now they put ’em right into your chest.

I liked how before/during the procedure they drape a gown/sheet over your head so it feels like it’s in its own little private blanket-fort while they are doing this weird thing less than a foot away. It was kinda cozy, honest!

That may have been my favorite part about the whole thing. Or the drugs that help you chill the hell out, those are def. in the running for favorite part too, because… Whew.

A port is basically a connection point for IVs & blood draws, and it helps save your veins. Considering that I’ll be going through at least 16 total chemo sessions, it’s worth it to be given this “greater ability” (!) to connect up to the medicines I’ll need. So, although I’m pretty sore and it’s kinda a bummer to go through yet one more procedure (oh cool, not comfortable on EITHER side now), I think it’s worth it in the long run.

My style has gone Full Furiosa

Imperator-furiosa

The countdown to losing my hair was ticking… I haven’t really found a wig I like, but my hair was going to start coming out within the next few days (they can predict the timing pretty well for the regimen I’m on), and so they recommend shaving most of your hair off pre-emptively.

My friend who was originally gonna do the honors had a migraine (ugh! worst!), so I am super extra lucky that the talented and loving Vito was up for the challenge of sheering me. We didn’t go full Mr. Clean, Vito said “more like Joan of Arc,” which I’m OK with.

In high school, one of my best friends shaved her head, but I never went quite that short because I have a HUGE dent in my head. However, it’s not super-visible so far, so…. thankful for small things?

I mean, we all have dents in our heads — metaphorically speaking — right?

 

Chemo Party: Episode 2
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Currently hanging out for a chemo session — this is the second out of sixteen. But, I’m trying to take it little by little, so looking at it that way, after this treatment, I’ll be through half of the first type (AC) of chemo (!).

I’ll have 2 more sessions of this type: Dec 30th & Jan 13th, then switch to every week for 12 weeks straight.

Been listening to this during today’s session (on GREAT new Burger Records headphones gifted to me from one of my favorite little babes, Henry Dutch!) ❤

Makes sense Harmony & Cleo are listening to this stuff — a lot of stuff I like too…

Time in Pictures

Time in Pictures

I could say some general blanket statement like “man, Instagram is so weird,” and five different people could agree, with none of us talking about the specific way it feels weird to me lately.

In this case, weird isn’t bad, it’s just… odd. Over the last few weeks, any quick click onto my Instagram photos has made me feel just how strange my relationship to time seems to have gotten [insert time-is-a-flat-circle joke here].

I look at a whole bunch of pictures, and some feel relevant. Others feel like they were taken a whole lifetime ago. But strangely, the interface doesn’t account for lifetimes — it’s all just in weeks.

It was only 19 weeks ago that I got to go back to work from the surgery I had this summer (nope, not cancer-related… that and the year leading up to it is a whole ‘nother story, ugh!). That felt like such a HUGE victory then.

 

17 weeks ago, it seemed dire that my dog and I got sprayed by a skunk (for the SECOND time this summer — our neighborhood has a problem).

my poor buddy #sparkycoupon got skunked! <where is the skunk emoji?>

A photo posted by mariah (@mariahbbc) on

 

11 and 12 weeks ago, I was relishing having healed from that July surgery by dancing (gently!) and hugging and celebrating the love that three different sets of friends had for each other (THREE WEDDINGS IN TWO WEEKENDS! SO. MUCH. LOVE!).

A photo posted by mariah (@mariahbbc) on

close up on a tiny bit o overhead army/@thebangdanceparty light action #dougette2015

A video posted by mariah (@mariahbbc) on

best weekend/best people #dougette2015

A photo posted by mariah (@mariahbbc) on

 

…and it was right around then that I noticed something that seemed like a swollen lymph node. I went to my family Dr. A substitute doctor with braces (I know, I shouldn’t judge, but I keep calling him Dr. Braces), told me “95% sure it isn’t cancer, but we’ll set up an ultrasound for you in a few weeks — you can cancel it if you don’t feel as worried next week.”

I’m glad I kept the appointment.

Also, PSA: trust your gut if you think something isn’t quite right. Even if you have ZERO other risk factors.

That ultrasound was just 9 weeks ago. The biopsy, first thing the next Monday morning.

looms & grown-up coloring books – #giftsofart has really stepped up their game!

A photo posted by mariah (@mariahbbc) on

(^can we talk about how the name of that program really does NOT translate well into a hashtag?)

I got the results 8 weeks ago. I had to make the decision whether or not I wanted to ever have the possibility of having a kid a couple days later. No pressure.

7 weeks ago, I started injecting myself with enough various hormones and medicines that I felt like a walking science experiment.

4 weeks ago I had a sci-fi-sounding “egg-retrieval” procedure. Amazingly and luckily, it went well.

3 days after that, I had a lumpectomy.

Two weeks ago, I got the thumbs-up from my surgeon and met my medical oncologist (chemo doctor).

sadly, not the name of a chemo robot

A photo posted by mariah (@mariahbbc) on

One week ago I had my first chemo session.

Time, man. Time.

In some ways, it’s a great thing everything has moved so quickly. But in another, there’s a whole lot of living and decisions packed in with the sleep and the medicines and the chemicals and the Oh Man Life!-reflecting that’s bubbled up around everything in just the last nine weeks.

I kind of have emotional whiplash. I kind of have communication-whiplash.

There is SO much to be thankful for and honestly, SO many moments of relief and joy — often surprisingly — packed within these last nine weeks.

I’ve made it through my first round of AC chemo pretty well. It is definitely not super-fun-times, but going through a cycle of my body responding to both the chemo and the various drugs they give you to try to help with the side-effects is informative. Aches, nausea, fatigue, lack of appetite all made an appearance, but none felt insurmountable so far.

What’s lingering this round is mainly just extreme tiredness, some soreness, and feeling a little fuzzy in the head.

I’ll have this AC chemo treatment every two weeks for the next 8 weeks.

After that, I’ll have a different type of chemo each week for 12 weeks.

And, after that, I’ll have radiation treatments once a week for TBD # of weeks.

That’s a heck of a lot of weeks, so I’m trying to just focus on one at a time. And, when that feels like too much, sometimes I just think about one day.

Time, man. Time.

 

 

 

One chemo session down…

One chemo session down…

…however many (I knew last week, but seriously, my brain = space case at the moment) to go!

Back home and resting — suuuuper thankful for my dude and my dog. ❤

Listened to this ever-comforting record a few times in a row…

…and now moving on to checking out a recent purchase of instrumentals played by middle and high schoolers from West Michigan…

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On first listen, I think I dig side 2 (middle school) over side one (high school), but the verdict’s still out.

Tell me your favorite comforting or just-plain-huh weirdo albums and I’ll try to fit ’em into my listening catch-up!

Now for more resting. ❤

 

Everything’s TOTALLY COOL

I start chemo tomorrow and I’m all…

calmowl.gif

…kidding! Kinda.

I feel strong, I feel surrounded by the best people.

But I still feel moments of that, pictured up there ^

It’s a dreary day, and the fact the nurse couldn’t get a vein easily today (they haven’t decided whether or not to do a port yet) makes me a little skittish.

Also, hearing directions/info about how I’m basically a walking biohazard for a few days after treatment is a little surreal. NOBODY TRY TO TOUCH MY BARF, OK!? I KNOW YOU ALL WANT TO.

Listening to this album, though, is doing good things for my mood and brain and gut…

Love Train: Thanksgiving Edition

Love Train: Thanksgiving Edition

Right now a friend is helping rake the last of our leaves off the front yard. I feel bad and want to rush out there to help because the sun is setting (so early!), but my left arm is still wonky anyway, so I don’t think I could be much help.

My friend Jo and her little babe Opal just left after dropping off some Trader Joes provisions and chatting a little with me. As they were leaving, another friend came up the walk with post-Thanksgiving dinner. Lunch today was from one of our friends who used to work with Jeremy at AMG.

Fitting and reassuring that this weekend closes with a literal train of love to our driveway and door.

This weekend continues to be about thankfulness. Thanksgiving with my family was very good, heartening, cozy, but by the end of the night, I was exhausted. I’d only really even been out to run an errand or two in the two days prior.

I was tired, but thankful we were all together around a table, there with each other. I was sore, but thankful I didn’t hurt more than I did, and thankful the soreness was for a larger positive purpose of eventually getting back to health.

I am incredibly thankful that I found what I initially through was a swollen lymph node under my arm just 11 weeks ago.

I am thankful that experts tested it and did a biopsy 7 weeks ago, especially since we now know that the type of cancer it is would have a far scarier prognosis had I found it much later. Time is strange right now.

I am thankful there is some sort of treatment, especially, and that that will continue through the next 20ish weeks.

But I have also had moments, hours, days, of feeling sad, and flashes of thinking that this whole set of circumstances is just plain cruel. 75% of the time, I can even laugh at the dark humor, but sometimes I just can’t.

I know in my head and have seen all around me again and again throughout my time that life is simply not fair, is sometimes very, very cruel. I have seen it be far crueler to folks far younger and more vulnerable than I. Illness cuts across privilege, class and background, to the very root of some of what makes us human.

And so I am thankful that overall, life has not been that cruel to me, for a great percentage of my experience. That is a sort of grace, a sort of breathing room — even when and if it didn’t always feel like that, even when life still felt like a scramble.

Because as much as we like to think we can avoid it, we will all inevitably experience some sort of physical vulnerability. I can even convince myself that I am thankful for the chance to practice that — that vulnerability — as an essential part of getting better at being human.

But damn, is that difficult for me. Accepting help and letting people in is really, really hard. Even writing out what is in my head is hard (though helpful) because I’m so used to being solo in there.

So I trust that practice will make it easier, and I try to just relish how astonishing and amazing it is that people are so willing to share kindness, to lend a hand, and to help — right now and hopefully in what the Dr called “the marathon” of the months of chemo ahead.

Thank you. Each one of you reading this has likely already helped in some way. Some of the care packages I’ve gotten have literally made me tear up at their sheer thoughtfulness. Other folks are planning and scheming, and whether it’s signing up to lend a hand, bring a meal, or the folks who helped contribute for us to get by during the times I can’t work, I am so humbled and almost unexplainably grateful.

Thank you to each of you for your part… keep it comin’. We may call on you in the future — be prepared! ;D (It’s also OK to say no).

I don’t know how I will be able to extend this train of love to you in a time ahead, but I can promise I will try to do my very best…

^despite the lyrics, don’t worry, not planning on roamin’ away…

The most metal thing I learned about chemo yesterday…

…(besides the metallic taste part)…is that one of the types of chemo I’ll be having CAN TURN YOUR TEARS RED. For real, the warning says:

“Do not be alarmed if your urine, sweat, saliva or tears are red/orange colored”

Ok.

Besides being messed up, you have to admit it’s also PRETTY METAL. Or at least kinda crazy horror-movie-aesthetic.

But overall, chemo is not really metal or not metal in my mind — it just kind of IS (a thing, I mean). It’s not that I’m not intimidated, just that it’s something ahead that is probably going to suck for awhile — and hopefully won’t but possibly may feel exceptionally crappy — but then hopefully not feel so crappy eventually.

They set the appointments WAY faster than I thought they might, but I think that’s good — a few things I skimmed seem to indicate that early-stage TNBC patients who start chemo within 30 days of their surgery have a slightly better prognosis than those who wait a little longer. So, yeah, getting ready to start chemo a week from tomorrow (with preparation appointments next Mon & Tues).

From our initial meeting, I like my medical oncologist (chemo dr.) quite a bit — bedside manner-wise as well as seeming-to-know-her-stuff wise. She was caring and funny and open and most of all, very real in her conversation and approach. I think it helps, too, that UM is a “comprehensive” cancer center — they are able to offer other support services that are a bit more whole-person than other centers might.

…not that I’ve taken advantage many of them yet, but since it’s a long haul, I’m thankful they are available throughout the next 5-7 months depending on what comes up. It also seems like doctors and nurses have a lot more ability to/focus on controlling or balancing out chemo side-effects than there used to be, so that’s encouraging.

The basic timeline: 

  • One double-drug (Adriamycin and Cytoxan) regimen every 2 weeks for 8 sessions.
  • Then, a following one-drug treatment (Taxol) every week for 12 weeks.

…then on to either another surgery or radiation (based on recurrence score/genetic information).

So, not exactly the MOST fun winter, but hopefully with lots of rest and coziness, fires in the fireplace, and snuggling with Sparky Coupon.

Given that we finally know what things will look like for at least the next 4-5 months, we just updated the MeanTrain thingy with more signup dates for meal help in December and January.

GIANT thanks to so SO many generous folks who have already been helping us a LOT! The best cards, mail and care-packages, an amazing hand-made hat and fabric, health and healing services, delicious healing food and even the mundane errand help — it helps a LOT! ❤

 

 

Sunshine, Jams, Good News!

Sunshine, Jams, Good News!

It’s sunny and beautiful in Michigan today, but it also finally got around to getting cold. Might snow tonight, which I’m actually kinda excited for (don’t get annoyed at me!). It is almost Thanksgiving after all!

We got some mostly-good news as a follow-up to last week’s surgery!

Still waiting on some puzzle pieces (mostly genetic information that will influence chance of recurrence/consideration of additional surgery), but here’s the breakdown so far —

The biggest significant thumbs-up is that the surgeon achieved “clear margins,” which basically just means they have proof through pathology that they were able to get the whole tumor out with a small bit of regular tissue around. Awesome.

Although the growth was slightly larger than they initially thought, it has not spread to the surrounding lymph nodes. Hooray! This is a BIG relief! This likely puts me at Stage 2, but stage 2a, rather than 2b. We will double-check this distinction with the Drs in a big ol’ follow-up appointment on Monday.

The type of cancer that I have (we’ve known this since initial biopsy/diagnosis) is called triple-negative (TNBC), and cells can still spread via the bloodstream, so of course it’s important to follow surgery with full chemo and radiation. But, chemo and radiation were in the plan already, we just didn’t know exactly what types of chemo.

the_ronettes
dream hair

Now taking favorite wig-shop recommendations. If I’m gonna lose my hair, I may as well have a sweet Ronettes ‘do or at least Pleasure Seekers-style bangs/long hair for a little bit!

The good news about triple-negative is that although this type used to be one of the scarier breast cancer diagnoses, research on it has come exceptionally far in the last ten years, and it looks like it sometimes actually responds better to chemotherapy than other types. Its lack of extra hormone receptors also helped me feel more OK doing all the fertility-preservation stuff, and it’s especially lucky that I caught it early, as that improves my prognosis greatly!

So, all-in-all, I’m feeling good (with occasional pangs of nervousness, I mean I’m human), about the outlook and the 6-8 months ahead. It will still be a long haul, but after our introduction to the medical oncologist (chemo expert doc) on Monday, we’ll have a better idea of what things will look like ahead.

My friend Tori and I have had a long history of swapping music and mix CDs (even if we haven’t done it as much the last couple years), and she’s always had great taste.

In fact, she was the very person who introduced me to Chandra’s Transportation EP waaay back when, so it seemed especially perfect timing that a few other friends on tour this last week actually got to catch Chandra perform! File that under things I never thought would happen but am totally psyched did/do. Life, man!

So, in honor of today’s sunshine and good news, I’m sharing a mix she made for me to get me through this last month or so. ❤

Positive Vibrations for your Friday!

*Regular Spotify disclaimer — if you hear something you like on here, think about buying the record or an actual download o’ the song. Art and music are important and deserve your support, financial and otherwise!
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.