Hope you like coloring!

I just had something happen that seems like some sort of cosmic joke. But, like one that’s actually FUNNY instead of that time I’d just recovered from a year of being sick on-and-off only to find out three months later that now I had cancer…(that was slightly less than hilarious, cosmos, please take note.)

Today, I woke up early because Sparky had an upset stomach. After I took care of him and was trying to get back to sleep, I heard the beep beep beep of a delivery person scanning packages downstairs.

Sparky was already nestled back in and snoozing, but I was restless, so I headed downstairs to investigate.

I opened the door to find two things:

1) A piece of work mail that had traveled less than a mile but was somehow ANNIHILATED

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2) This

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As you can see, that is a WHOLE LOT of boxes. ONE HUNDRED AND TWENTY EIGHT POUNDS of boxes, to be precise.

Since my left arm/side is still recovering from surgery and my right arm/side is still recovering from port placement, I can’t even lift one these boxes at the moment (wake up, Jeremy, got some liftin’ for ya to do!)…

So, I have to leave them on the porch, but I’m bubbling over with curiosity. What is IN here?! Some amazing elaborate Christmas gift?  Who could they be from?

The labelling didn’t yield any clues.

I grab a pair of scissors and open up one of the boxes right where it sits.

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I laughed SO hard and loud.

I laughed until I cried.

Right after my diagnosis, I’d happened upon a link in a great (non-cancer-y) online group of women that I’m in. One of the members had heard about this coloring book project, and having just been super-thankful for U of M’s own version of a coloring book, I was curious.

I sent a super quick note to the creators, saying I thought the book was a cool idea, and that it was refreshing to see such a potentially overwhelming experience handled in such a way.

Since I’d missed the Kickstarter, I wondered if there still might be a way to purchase a copy or two to check it out and maybe share with a couple folks locally that might appreciate it. They generously said, don’t worry — we’re happy to send you a few for free.

I thought I few would be like five. Maybe six.

Apparently it’s HUNDREDS?

ONE HUNDRED TWENTY EIGHT POUNDS OF COLORING BOOKS.

Is this some sort of lesson? Some kind of symbolism? What the hell am I supposed to take from this? Is this me-trying-to-help-others ending up as a huge wall or burden, in super heavy physical form? Is it me having to accept help (in moving the boxes, in distributing the coloring books)?

I’m choosing not to think of it in any one specific symbolic way, but still take it as a hilarious result of good intentions gone awry with bad record keeping/shipping info.

And I hope to gawd I can find good contacts who will appreciate these books without too much hassle! I won’t let them go to waste… that much I know. I plan to contact Gifts of Art, the CSC, the local chapters of YSC and Gilda’s Club and a few other organizations after the holidays.

And hey — at least I got a good hearty five minutes of laughter out of the whole thing. Heck, I’m still laughing as I write this.

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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!

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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

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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…

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…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…