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.

 

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.

brb, gonna go rollerblade!
brb, gonna go rollerblade!

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

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.