The Plan, At Least Right Now…

Still have my hair!
*Weird lighting not a side effect, just my window

Hey All,
I have a lot more thoughtful things to say, but realized in recent conversations that I’m halfway (or close to it) through chemo and haven’t shared some of the basics of what my situation/plan is. I’ve been so IN IT that it’s hard to keep track of what information I’ve shared and what’s just hanging out in my head*

First, a few things, some of which I included in an earlier email:

  • Yes, this is a recurrence of the same cancer that I had seven years ago
  • It is triple negative and inflammatory (wasn’t inflammatory last time, just to mix things up and keep it exciting)
  • Blessedly, the scans of my brain, lungs and rest of my body are clear (!!!)
  • I am in great hands with Northwestern’s Oncology staff; the prognosis is good; the intent of treatment is to cure
  • From all signs so far, the cancer is responding very well to treatment
  • I’ve kept my hair so far (though my left eyebrow is making a break for it) through a process called cold-capping. I don’t look as different as you might think, though I feel approximately 3,551,314 years old a lot of days

So what’s the plan here?
What does the map look like?

Each Thursday since the beginning of November, I’ve been receiving weekly chemo (Taxol, Carboplatin), infusions with immunotherapy (Keytruda) added in every third week. This will continue through the end of January. Then, I’ll have scans that will help my doctor assess whether or not to add in two additional chemotherapy agents in February. If that happens, those infusions will be every three weeks.

Whenever I’m ultimately done with chemo, I’ll have a few weeks to recover, and then go in for surgery. I appreciate any and all surgery advice from those who’ve had mastectomy or top surgery. I’m humbled and honored that there are folks who want to share their experiences with me! What’s planned for me is a bit different, but I’m sure that a lot of the tips will still be helpful.

I’ll recover from the surgery for 4-6 weeks (likely in Michigan, I have more helpers there), and then begin daily radiation back here in Chicago. My best guess is that radiation will be for 5-6 weeks, though the nurse has said we’re too far out to really start talking about that yet. That will take me through late May or early June.

Provided that all of that goes smoothly – I’ve learned not to get too attached to a specific timeline – I’d officially be done with the bulk of active treatment in June, with immunotherapy infusions continuing every three weeks for a while. That’s easier to schedule, though, as it’s just a few hours.

Great, let me write all those dates down on the calen — oh…

Of course, plans can change any step of the way. Some days I feel totally capable of doing this; others it feels overwhelming to stare down another six months of treatment and who knows what side effects. Looking at a new year hits differently when you know half of it will have to be organized around a treatment schedule.

Still, I am thankful there is treatment, I am thankful I have access to it, and I am thankful for my body’s capabilities to heal and just be, even on the rough days. I hate having to go through this again, but signs and tests point to my body having healed remarkably well from 6-7 years back.

I continue to be immensely thankful for the notes, calls, funds, care packages, treats, and love you’ve all been sending my way. It definitely helps me keep going.

How to help

My dear friend Onna created a signup for reaching out during the winter doldrums, and it’s been a really lovely way to have an excuse to (re)connect with folks! No pressure or expectation, but if you’re feeling like you want to catch up, text/call me anytime or sign up on the list! Also, if you are generally a night-owl lemee know. Sometimes the steroids keep me up and you can ask me dumb questions into the wee hours of the morning, if that’s entertaining to ya.

Please keep sending me and Mr. Chew all the feelings, vibes, spells, prayers and whatever you can, we appreciate it and we’re sending love right back out to you all!

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Heavy Music, Lighter Times

I hadn’t listened to Heavy Cream’s Super Treatment in a minute, and was suddenly in the mood for it during my chemo sesh today.

All the songs are making me wanna drive around with the stereo cranked. So heavy, like these songs should be. Thumbs up to Ty & the band for producing something that sounds nice and thick and heavy but still snotty and defiant.

Jeremy keeps old Bang! mix CDs hanging around, and sometimes one will be in the car. I love how they are little time capsules of the things that he’s/we’ve been listening to or loved at a particular point in time. Since we’ve been together for almost the entire life of The Bang, 14+ years, there’s a lot of time with touch points in that music.

This last week, I was listening to one that happened to include Joan Jett’s version of Shout — kinda the only version of Shout that doesn’t make me feel like I’m at a wedding reception (way to be, Joan). It’s not like, my very favorite song ever or anything, but I like hearing some different energy in the vocals, and I had totally forgotten it existed.

Hearing it was a welcome jolt and also hearing anything related to The Bang was bittersweet as I had more mixed feelings than I’d expected about the fact that last week, the guys moved out of what had been The Bang! Studio for many, many years. The studio was where I celebrated my 30th birthday. It was something that enabled the crew to built giant sets. I spent some happy time there with staple guns, glue, PVC and paint. I stored merch there for the job I had before going back to grad school. It was a place of grand possibilities, and we finally got access to/could afford it after a LOT of hustle and watching J and the crew build sets and paint outside/in a windy carport in terribly cold weather for a few years.

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A lot of stuff happened there. A lot of friends found space to make music and do things there. I sang backup on a song about pizza, even. It had a good run.

I feel like I’ve been in a sleepy, occasionally frustrated bubble zone for the last two months. Having to settle for mostly sleeping and jotting things down in notebooks for later, catching little moments of the way my brain and energy usually work. I am still myself, but I am a version of myself that is so inward-turning and bit-by-bit and unable to sustain extended focus that it’s hard to recognize it. I’ve always really prided myself on my focus and tenacity in all sorts of situations, but sometimes those qualities have to be set aside for a little while.

80% of the time I’m accepting that this is the way it is now, and the other 20%, a gut level reaction, one that can be accepted but not eliminated by resting, meditating, yoga, and other healthy things… that other 20% of the time, I want to scream and run and dance and jump up and down. I want to crank the stereo and drive with the windows down. I want to turn up the volume on my amp and play along with a song just because it’s fun, not ’cause I’m any good. I want to work on projects and most of all make things. I want to have the actual energy to talk to people and really, really listen and make a plan or two I don’t have to hedge because I might need to cancel.

Those things are still a little ways off, but today I got pretty badass news, befitting of spring, that that horizon is much, much closer than I thought. 

I thought I had 3-4 more sessions of chemo and then radiation. Today, in an act that feels like spring mercy (but is really just based on solid oncologist knowledge and the fact that blood cell nadir was reached a few weeks back), my oncologist went through everything and told us this is my SECOND TO LAST chemo session.

I’m ELATED. This doesn’t mean that the next few days post-treatment won’t hurt or be kinda difficult, but it does mean that mentally, I’m more ready for spring and for change.

Weirdly, I feel more allowing of myself to rest knowing that there is a timeline for the tiredness getting less and less. I don’t know what that phenomenon is, but it’s a thing. I’m totally ready to accept that I only have so much hibernation left. And the fact it’s less than I thought catapults me much farther forward. I thought I was just at the halfway point from our conversation two weeks ago (granted, the visit two weeks ago was kinda bonkers because of the power outage/no computers thing), but I can’t even quite describe the type of relief I feel at not only moving along, but being farther along that I thought. Definitely feels like a sort of grace.


 

We could still use a little bit of a hand with meals through at least the early part of radiation. It will still take awhile for me to be able to cook more (though I made a couple meals during my pause from chemo). Everyone has been so, so very generous so far, so no pressure, but if you want to take some weight off Jeremy and I, there are a few more meal-help sign-up days open through early May.

 

Back to it: Water Main Breaks, Power Outage & All

Earlier this week, I was still so tired,  but it felt like my brain was waking up a little more. I began noticing more and more (not my own!) typos in anything I was reading online. My first thought — “does this mean my blood counts are back up?”

Luckily, I found out late Tuesday that was the case! My white blood cell counts bumped back up after two weeks on-pause from treatment, and were over 100 again, so we could start a new chemo regimen yesterday.

For now, the plan is to switch from a lower dose every week for 12 weeks (only got 2 weeks in on that plan) to a higher dose every two week, with a neulasta shot to give my bone marrow a nudge between sessions. I gave these shots to myself during AC treatment in Dec/Jan anyhow, so I’m used to doing this. There are different potential side-effects, but so far, it’s not terrible.

So, I think yesterday’s chemo session was 7/10 instead of 7/16, but I’ll know more certainly about that next week. I’ve been told not to think of the end-date as set in stone at this point. This entire thing is a constant lesson in not getting ahead of myself.

Yesterday was a record-setting day — from showing up to heading home, it ended up being an eight hour day. WHEW! No wonder both J and I are worn out today!

It was intense and hectic for everyone from the patients to the support staff to the docs yesterday — a water main broke on the top floor of the Cancer Center, and water leaked down, down, down… shorting out almost every single outlet on the floors below except for the “emergency” outlets.

This meant no computers except laptops charged off the emergency power strips, so all of the steps that usually involved scanners and check-in, etc. were on printouts. Even my medical ID bracelet was sharpie-on-plastic DIY-style.

Jeremy’s exact words were “this is like a hospital in a movie!”

You know when you watch a TV show and a hospital is all crazy with bonkers-overflowing waiting rooms and a man is walking around in circles for an hour with the most EXTREME hiccups you’ve ever heard (sorry, mister, everyone totally understands that might just be a part of what you’re dealin’ with), and there’s an older gentleman who REALLY wants to play a game on his phone but doesn’t understand how to turn the sound off, and then the nurses are running all around calling folks’ names over and over because there are just SO many people? Bingo.

Once we got back into the chemo area itself, it was relatively chill, but even one of the nurses there admitted he was kinda waiting for things to turn into a zombie movie or something. If I was a rich woman, I would’ve bought an after-work round at Casey’s for every single person on duty at the CC yesterday.

But the bottom line? Dang do I have admiration from every single staff person who showed so much professionalism. It was pretty amazing, the level of not only grace, but graciousness-under-fire that I saw each step of the way.

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.