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.

Inside the Recovery Room — aka: Our Couch

Jeremy here. I’m happy to report that today’s surgery was a success! The lovely Miss Mariah is recovering incredibly well… at our house, no less! Indeed, today’s procedure was an out patient one, despite its severity. For now, she’s on a strict regimen of painkillers every 4 hours for the next day, so for me, it’s all about scheduling and trying to keep her from watering plants (it’s not easy).

Next up — after a ton of rest — will be awaiting fun stuff like pathology results and genetic evaluations, which will determine if there are to be more surgeries, as well as what type of chemo she’ll get (there are few — some kinder than others). It’s one of the first things they taught us in orientation — each breast cancer is different… and you’re in it for the long haul. It’s important to remember just how much of a marathon this whole ordeal is.

So we take each step as it comes. That’s really been the key to all of this. Tackling one obstacle at a time. Not getting overwhelmed with the big picture or getting ahead of ourselves. It’s what gets us through… That and support. Holy smokes, have we got a great home team! Thank you one and all.

So that’s it for now. Until next time when Mariah chimes in not all hopped up on drugs, this Jeremy. Over and out.

All’s Well…

…or as well as things are right now. Had a minor surgical procedure today.

Still groggy, really sore, but everything went really well. I’ve been back home recovering most of this pm with the aid of my dude Jeremy, Sparky the wonderpup, and drop-offs from a few other friends & family (the ones who understand when all I have in me is a bleary “ughhhh” as a momentary hello from the couch).

Last week, I planned on being at work all day tomorrow, but then some very kind coworkers gently pointed out that I might be temporarily INSANE, and from the way I feel at the moment, I am extra thankful for their intervention.

Still planning on being at work Tuesday, though. Have a few loose ends and some Normal Life Stuff™ I wanna fit in before things get entirely bizarre.

SPEAKING OF BIZARRE, Wednesday afternoon/evening, I get RADIOACTIVE DYE injected into MY NIPPLE, which is — as my friend Amy pointed out — a possible super-hero origin story. Then, Thursday is my real-deal surgery, here at U of M’s Cancer Center.

In general life, I don’t really talk that much in detail about my anatomy (maybe in a zine/but not too much on the interwebs), but it also feels like total honesty is best in this situation, for a lot of reasons.

Tip-toeing around certain things can be exhausting, especially when you don’t feel those things should be stigmatized to begin with. But typing about my temporarily radioactivity still stirs an odd feeling that’s both uncomfortable and maybe a little exhilarating?

But really, guys, lbr — we all know about nipples! In fact a LOT of us HAVE THEM!

Ok, ok, despite finally being awake for a few hours in a row, I’m obvs. still kinda loopy — time for more sleep.

G’night, friends.

It Just Happens Sometimes

When I was working on my zine a few weeks ago, I started making a list of “unhelpful things my therapist said,” while I was waiting for – and then after – my diagnosis.

I scratched the list from the zine, partially because I don’t think my therapist meant any ill will, but maybe it’ll appear in a future edition.

One specific thing was talking about her dog having cancer, which — though I do love dogs — just felt odd and not all that comforting. But hey, I am super glad her dog is OK now! Dogs are wonderful and important! And mine is one of my top nurses — I am grateful for him every day…

When people are confronted with something harsh — with you telling them news that is uncomfortable for you both, and possibly startling to them — they try to connect with you on whatever level they can.

That initial impulse is a good one, a human and empathetic one. It’s not one I want to quash or make people question. But sometimes it turns in interesting directions, some less productive and helpful than others.

But still, I think the fact that you’re two people talking about this difficult thing usually trumps any weirdness that might come out of someone’s mouth.

Personally, I’d rather have someone keep talking to me about things than bite their tongue or stay away due to being afraid to say the wrong thing. However, there is a particular line of conversation that I’ve found myself in — whether with my therapist or a colleague — that just doesn’t really get us anyplace too productive.

Here’s one of the things my therapist said immediately after I told her that yes, I had invasive breast cancer:

“But… you eat so healthily — organic stuff and hormone-free dairy and fruit and vegetables!”

Um. Why yes, yes I do, or mostly have. I love an occasional bag of Doritos every couple months (who doesn’t?!), but my diet is heavily plant-based, mid-high in fiber and low in red meat. I was vegetarian for almost half my life.

Though my body was under stress from another unrelated condition this past year, that condition meant I needed to work with a nutritionist, who felt I was already doing really well, despite my limitations. And no doubt, I was eating “clean”-er than ever. According to my BMI, I’m not overweight, I get a healthy/moderate amount of activity, and I’m still under 55.

I haven’t used cosmetics or personal care products with parabens or other possible estrogen analogs for over a decade (um, can I get my money back for that extra cash I spent to do that?). I generally don’t heat or store things in plastic containers, etc. etc. etc. …even those things where the verdict is still out, I’ve erred on the side of being careful. We even had a family test for the BRCA 1 and 2 gene mutations a decade ago, and nada!

If the breast-cancer risk-factor list was a quiz, I would ACE THAT SHIT, or at least 95% of the controllable factors. At least two of the Drs. I’ve seen have said as much (possibly not using the word “shit”). But at the same time, they’ve also said that breast cancer rates are on the rise for younger and younger women who are “doing everything right.”

In my last session, my therapist was kind of set on figuring out that me getting cancer was the result of one-of-two-things (both beyond my control). I don’t know why it was so important to her to try to find “the answer,” but honestly there is just NO way we can know that. And other than preventing recurrence, it’s not even that useful at the moment.

As much as we know now about cancer risk (and I’ll likely learn much more about my specific genetic profile over the next two weeks), risks are still percentages, calculated in aggregate. Lives and bodies are still incredibly messy and unpredictable things. We are not machines.

I think that trying to figure out a “why” is a natural impulse. A few nights when I haven’t been able to sleep, it’s way too easy to fall into the I-know-this-is-illogical-but-what-did-I-do-wrong/to-deserve-this trap. But it IS a trap, for the most part.

We want to figure out the exact why or how because we want the world around us to have some order. We want to think that if we eat or don’t eat this or that or do or don’t do some particular thing, we’ve made ourselves safe.

As much as we know the world is not fair — more brutally unfair for many people much more than for me — there is still a part of us that wants to believe that if we just check all the boxes on the “health” checklist, we are somehow insulated from illness.

But we live in human bodies. Bodies are great at healing, but they are also often the things that break down, make us most vulnerable, that will always, ultimately, force us to face that vulnerability and let go of our stubborn idea that a strong will can overcome everything. Will can do a hell of a lot, but bodies are just bodies, and sometimes things do just happen — despite all our best efforts.

Though we can spend some energy looking for answers and ways to keep this from happening to us or others again, we cannot, ultimately overcome our human-ness, and the vulnerability that comes with a body.

Sometimes, despite all the efforts we make to protect ourselves — things do just happen.

At that point, it’s only in how we respond that we have much control, and that we can choose to use it to reflect on vulnerability, compassion and interconnected-ness. I think that’s the best we can often do. And that’s still important.

Dark Jokes & Radio Medicine

I’m pretty worn out, and very sore. The shots and sheer number of appointments are already getting to me, but I’m trying to keep a sense of humor about it.

Since the waiting-game pre-diagnosis, I’ve just been making terribly dark jokes and mostly only writing them down, because they are possibly only funny to me, but here’s this morning’s:

Screen Shot 2015-11-02 at 11.25.55 AM — #nihilistjokes

HA! You have to admit, it’s at least a little funny!

Anyway, after that, I had a bad blood draw and a pretty overall bummer (not bad news, just things not going smoothly — MONDAYS, amirite?) appointment, so I got in my car feeling pretty drained.

But then I turned on WCBN, and this was playing…

…and so I rolled the windows down, cranked the volume up, and cried/laughed for a second because it’s gorgeous outside.

And then a few songs later, this…

…and I just marveled at how many times CBN has been an antidote, an extra nudge, or good medicine even when I didn’t know that’s what I needed.

Radio, man. Music. CBN’s a special thing.

So now it’s time to drink some tea, take a shower, and get back to work.

Writing/Posting/Paste-Up

It probably just means I’m old, but I’ve realized that how I write is inevitably shaped by what I think the final format might be. I realize that doesn’t really fit into current ideas of “content,” but screw that — I don’t have a media conglomerate lording over me, so…

¯\_(ツ)_/¯

Anyway, I made a comment last week about writing things down to deal with life. It’s weird for me because, once upon a time, writing was most certainly the way I dealt with the entire world. It was the way I processed things that had happened or were happening. But, then I got into making metal stuff, and prints, and music, and had various different outlets. But I think writing is still a really particular one for me.

…but although I am into the general idea of living and learning in a very open way in public (see We Learn in Public, my short-lived school-related project a few years ago), I’m also not 100% there. Way back when, I was more comfortable with diaryland or livejournal than other formats. Most comfortable of all was still the physicality of creating something on paper, and mostly, it still is. Block printing, collages, and paste-up feel good to me, even when largely assisted by computers.

So, if you’re interested more in what a certain week and a half of time felt like, shoot me your mailing address (mbcherem AT gmail) and I’ll send you a copy of the zine I just made for the AMAZING Zine Show some rad friends just put together last weekend.

I mean, 19 people actually bought copies of a zine that included stuff about cancer, so it must be somewhat interesting, right? It was basically me practicing being completely open and honest in a way that is difficult but, I think, important.

I can’t promise I will mail it this week, but I love real paper mail and plan on sending a bunch while I’m recovering after Nov 12, so expect something then if you request a copy…

Sharps, Signs, and How The Kool-Aid Man Gets Things Done…

I could write a lot about needles, and about my changing relationship with them throughout the last 20+ years. Maybe I will consider them in that, more thoughtful way, in another place. I’ve realized that I write differently based on format. I’m trying to keep this-y-here site more “here’s what’s up” rather than personal essays.

But yeah — needles. Right now, I am comfortable with them, mostly.

This is good, considering that I’ve been giving myself injections for the last week. Mixing the medications together seems easier now, less confusing and certainly goes faster. I don’t necessarily need J as my chemistry assistant now, even though it’s nice to have someone to say “man, that stung way more than usual,” to, or exclaim “look at that wild bruise!”

Depending on how you count, there are between 9 and 11 items required for this little ritual every night. Our first sharps container is full, and more medication is on its way to our house today.

Looking at those giant initial boxes, I found it hard to believe it was all medication (though let’s be real, there’s a lot of packaging involved) that would end up in my body. But I’ll have even more stuff to put into my body through at least sometime next week. Then they’ll “harvest my eggs” which sounds very autumnal, but also is such a weird word and makes me feel like a farm field or livestock.

After Sunday’s tests, the nurses upped my dosage, which meant that by mid-week, the body aches were getting more intense. This morning, I felt like I had the flu. A heavy, everything-hurts-ache sunk into my bones and joints as I was sleeping.

Our pre-op visit on Wednesday gave us some details on surgery and recovery, but honestly, the biggest takeaways I had were:

Thankfulness for hilarious stoner dude at check-in
It sounds like it will take me 2-3 weeks to recover
Reassurance that clip-art on bootleg signs in medical offices is almost always HILARIOUS

I was too tired between then and now to write much of anything. Tired from the medication, but also just worn out by the number of phone calls, hours on-hold, mis-transfers, voicemails, portal messages, etc. that ate up a good portion of Wednesday and Thursday.

The doctors and most other people at the Cancer Center are great, but it’s in the handoffs between other UMHS departments, among staff and nurses, in working with outside organizations, in working with pharmacies, etc. where inevitably something gets dropped.

I’ve dealt with all this sort of stuff plenty of times before. The circling back and being assertive and my own advocate, etc. But never on this compressed of a timeline, which makes it all feel different, and more stressful — particularly because I know it’s never the scheduler/clerk’s fault — it’s usually the people up the chain who have to check a box or fix the fact that I’m on the wrong list.

At one point, I just wanted to ram through a wall — ala Kool-Aid Man — into one particular clinic and exclaim “WHO is in CHARGE here?!” I didn’t, but that might have been kinda awesome, right?

But, thankfully, by the time Thursday was done, prescriptions were called back in correctly and on the way, and clinic visits correctly on the schedule. I rewarded myself with a chapati (and J got pizza), courtesy of a kind gift card from our pal Tom (thanks, Tom!).

When the nurses originally told me I’d add a new drug into my regimen tokay, I joked that because it was Halloween maybe I’d turn into a werewolf.

ok, so i’m WAY too old for a bat mitzvah…

Doesn’t look like we’re far enough along for that to happen, though, so sorry, friends, I will not be becoming a werewolf tonight… OR WILL I?

Given how my body feels at the moment, I think Mulder might be on to what is *actually* going on…

Although I was totally nerdy and kinda LIKED titrations, in Chem class, I was relieved when I didn’t have to do them anymore. So, too, I’m thinking I’ll be relieved when we don’t have all sorts of vials to combine and mix and then connect with Q-caps and various types of needles.

J is a champ, and his notes & memory were better than mine when we did the first night of the 2736-step shots last Thursday. Now, after a week, preparing everything seems like second nature.

But being a week into these shots at the highest doses means I’m also feeling swollen, puffy, exhausted, like I have a low-grade flu, and — perhaps understandably — a little cranky. Also, I cried at a radio ad (!?!) and I’m really not much of a crier.

I am sure this level of discomfort pales in comparison to chemo, though, so I’m just trying to appreciate where I’m at right now and roll with it the best I can.

I’ve got a couple of appointments today, including the main pre-op visit. So, there we’ll learn a little more about the details of my first (and hopefully only/main) surgery on Nov. 12.

Physically crummy as I feel, I am super thankful to even have this option to try to save some eggs, etc, pre-chemo.

Also, I’m feeling waaay fortified & supported – between a firepit visit with great friends (2 from far away, 2 bearing amazing soup, ALL the BEST people with great hugs), notes, songs, cards, and the HUGE outpouring of support last week.

Thanks, dudes. It helps!

A HUGE thankfulness…

I feel like I have been absolutely swimming in gratitude over the last few days… even when on the phone setting appointments, when getting nervous trying to be sure I’m prepping my injections correctly, while trying to help folks on the reference desk at work, while sitting quietly on the porch with my dog — the whole time, I have been overwhelmed with thankfulness.

I’m bowled over, honored and humbled by all the support I’ve received over the last week — first through the google doc (I honestly thought we’d get like 12-15 folks and felt pretty good about that!) and then through people contributing to help us get through while I’m in treatment.

The day my friends Onna & Pete launched the GoFundMe campaign, I literally cried (with gratitude) into my lunch.

I always feel tremendously lucky to have so many great people in my life, but to feel the generosity and support of those folks (you!) so personally is really amazing. Thanks to Onna & Pete for doing this even though I was stubborn at first. (I am very very stubborn, perhaps too much so) ❤

Thanks to you all. I know the months ahead won’t be easy, but not having to worry as much about bills after medical stuff ate our savings last year (I was successfully treated for another totally unrelated condition last year, but that wiped out our rainy-day fund and left us with a balance) is a big weight off our shoulders.

I thought I might end up feeling embarrassed or sheepish asking for help (I am VERY — perhaps at times foolishly — independent) but this swell of support and love has made me realize that I don’t actually feel those things after all — gratitude completely has eclipsed them and left me feeing far less alone.

Thank you for the love, whatever form it takes or has taken. I am humbled.

Boxes o’Drugs

What have I been doing? In the words of Tig Notaro, you might think “Oh, just sitting around having breast cancer…,” and there are certainly days where it feels like I am in limbo, or would be better off sitting around being a blob, but there is also a LOT happening.

Appointments, forms, labwork, more paperwork, patient education, scans, trying to fit in work (because I love my job and coworkers) and MAIL! I’ve gotten a handful of really amazing paper/snail-mail notes, which have been SO appreciated and loved. ❤

But then, there’s the official/medical mail too. Friday and yesterday I received one GIANT box each day. Each was full of drugs, but NOT the type that you use for fun.

Still, they ARE kind of cool and exciting simply because treatment has now gotten to the point where younger (me! i’m considered “younger” – believe it!) women diagnosed with cancer potentially have options if they might want to try have have a child eventually (after they are well out of the woods with chemo, radiation and other treatment)…

1/2 of the total drugs go in the fridge. good thing we got that new fridge! — 1/2 of the total drugs go in the fridge. Good thing we got that new fridge!

TWO of these GIANT boxes (fitness ball and folding chair for size/scale) arrived, thanks to the LiveStrong Foundation, UM and Walgreens

Of course, although fertility procedures like egg-freezing and IVF have been practiced for many years now, none of this is covered by insurance, so I am amazingly, startlingly grateful that we applied for/were granted assistance from the LiveStrong Program/Lance Armstrong Foundation and UM, which will cap costs at just a percentage of the usual fees.

Tomorrow we start the process by which ALL (well, 3/4, probably) of these drugs will be injected into my body over the course of 10 days. So if you see me in that time, please know that I will kind of be a walking science experiment, a bundle of hormones, and I will try to eat enough chocolate so I don’t cry at you or anything! ❤

Then, sometime the week before surgery (Nov 2, surgery is Nov 12), I will have a procedure. I never really considered having to use IVF or anything like that at all, so this still feels somewhat sci-fi, but I know I am in very good hands, and coincidentally, the main Dr. in charge of my case at UM did a fellowship with one of my all-time fave docs — Dr. Milad — who performed my surgery this July at Northwestern Prentice Women’s Hospital in Chicago.

Thanks for all the love, friends — responding to individual messages here and there as I can!