#thisismbc

What is really happening & we'll be finding out in the time soon

- are metastatic tumors stable or growing?  I had growths show in May with mets in liver,  lung, kidney , lymph nodes. I should have CT in August

- outside of that the liver is doing its own failure; it's caused physical & mental illness & can just turn off altogether anytime

- might have other prime organs just choosing to fail & there's little to do

- I'm very jaundiced

- I have to take a medicine to try to keep my brain functioning

- I'm essentially bedbound,  very weak,  have intermittent pain & meds

-is there any different treatment or chemo usable or is this all impossible by now?

Do not pretend end stage triple negative metastatic breast cancer patients thrive. That's why I've started to hate the word thrive. TNBC has highest rate of metastatic return and it has the shortest metastasis survival time.  That's where all the emphasis and fund-raiser needs to be : reducing stage 4 recurrence & raising its survival chances.

Yes. Yes, we have. We have been training for this moment. We have been preparing. 

(each all caps is a link to a previous post - click through if you missed them)

THE ONLY EASY DAY WAS YESTERDAY We knew harder days were coming. It’s how this works. Every day a treatment works means a day closer to when the treatment stops working. Today is gonna be tough and tomorrow tougher still. That’s the hand we were dealt.  I got 21 months on that line of treatment (with some whackamole radiation added on top). Each month was pretty much borrowed time. No surprises here.

GET COMFORTABLE BEING UNCOMFORTABLE Change, upheaval, uncertainty, new side effects - it’s all sand in our undies. Expect it. Oh sure some would say embrace it, but I think it’s enough to just accept it, to say yup, that’s how it is. Screw embracing it, just nod and move past it. 

DON’T RUN TO YOUR DEATH No need to put things in fast forward. They’re ticking along at their own pace. Don’t make stupid mistakes, keep your head, remember your strategy and your tactics. Whining is fine but at some point it’s a waste of time and energy. As is wallowing. Put a limit on the wallow.. I wallowed a fair bit between Wed and Friday (including during my Zoom metastatic support group meeting). Now the time for wallowing is over. (your wallowing time might be shorter or longer - you get to decide that. Just be sure it doesn’t become an indefinite thing....) 

HAVE A SHARED SENSE OF PURPOSE For me it is: keep kicking this can down the road. The length of time I spent on first line of treatment of Tecentriq/atezolizumab + taxane has meant that a whole brand new drug reported out trials and actually got through Canada’s very slow tortoise-like approval process. I’ve told my oncologist I’m interested in aggressive treatment and clinical trials.  I am a bit sad that my regular oncologist is away. I like her locum but we simply do not have the history and there’s so much trust required in this relationship. And for all that we all walk around touting evidence based medicine, so much of this comes down to judgement calls. Do you wait for another scan, make a call now? Push for a trial, use standard of care, try to go out of the box? I believe she and I are on the same page but to an extent it’s something I won’t know for sure until a bit more time passes...

 Alas, we’ve possibly hit a small snag - on Friday I had a follow up phone call with the oncologist who was feeling less confident that Trodelvy would be quickly approved for me. There’s an issue with that one biopsy last year which showed faint estrogen positivity. Everyone still considers me triple negative (& for that matter, this drug is actually in trials for ER+ pts & showing some good results too so it’s not as if that means it wouldn’t work for me, even if all my tumors are faintly ER+. That said, the current Health Canada indication is only for triple neg metastatic breast cancer) but that biopsy might complicate approval. Funding is apparently also more complicated than she anticipated. She filled out a bunch of forms on Friday & now we wait and see. 

If it all goes sideways, we have some options. 

-appeal the decision.. We have an oncotype test from 2018 which categorized me as triple negative which we could submit.. We could do a repeat biopsy and hope for a clearer triple negative result. 

-this drug is also available in the US and I know at least one Canadian woman who accessed it in Bellingham. 

-move to another chemo and worry about sorting out this one as a 3rd line. 

We make the plans, make the notes and flowcharts 

& then we let go of what we can’t control.

& get back to reading good books 

Book recommendation today is Lori Foster’s A Perfect Storm

To catch up on this motivational ‘how to get through living with terminal cancer’ series which is really me just goofing off with  gifs and also now telling you about Suzanne Brockmann’s books...

Part 1: The Only Easy Day Was Yesterday 

Part 2: Get Comfortable Being Uncomfortable

Part 3: Don’t Run to Your Death

Ok, here we are on motivational saying #4- Have a Shared Sense of Purpsoe  

In cancerlandia, this is all about 1) assembling your team, and 2) understanding  your goals. 

You’re going to need a team. This isn’t a solo sport. (If you’re the person who hasn’t told anyone, who only hangs out online on one message board under a pseudonym, who hasn’t set up your support network…. I don’t know what to tell you other than you’re making this awfully hard on yourself and I hope you’ll reconsider. Build your team!) 

   Your team will include medical personnel, psychological support, social networks, family and friends. 

For your medical team, you will need to assemble a medical oncologist and possibly a surgeon, a radiation oncologist, an interventional radiologist, and sooner or later a palliative care team. Don’t forget pharmacy, physio, massage therapy, social workers, dentistry, eye care. Take care of everything! Don’t let things slip through cracks and become big things! Sometimes you might need more experts. Sometimes you will want second opinions. Make good decisions with care. Ask your team questions, listen to their answers. Do your research, be prepared. 

Palliative physicians especially center their practice about “goals of care” but really, that should be a primary question for everyone undergoing cancer treatment, and especially treatment for metastatic disease. 

What are you goals of care? Think them through, make sure your team knows. If your goals are aggressive treatment, make sure your team is aware and is making treatment recommendations which are in alignment with that goal of care. If your goals are only palliation of symptoms, make sure your team knows. Your medical decisions should be aligned with the goals of care. 

Do you goals of care include clinical trials? Are you wanting to throw everything, everything, everything at it, or are you wanting “the regular treatment and I’m fine with how it plays out”. Or are you “please refer me to Medical Assistance in Dying”. You need to know, and you need to revisit this regularly. 

If your goal of care is changing, or you are unsure what a reasonable goal of care is for your state of disease at this time, ask your oncologist to have this discussion with you. 

Once you know your goals of care and you have your primary team lined up, all your supports - the social networks, the family, the friends, should all be aligned with that same goal of care. 

Do not let things distract you from your mission, your task, your goals, your objectives. 

This is your life - make sure everyone is rowing the boat in the direction you want. 

Bonus book rec!  

You will want to check out the next up in Suzanne Brockmann’s series: The Admiral’s Bride and Identity: Unknown republished together as Tall, Dark, and Daring. Do you need some daring? Some adventure? some happy ending? You know you do. Get it, read it, tell me all about how you loved it. 

(ok, amigas, my versions with their resplendent covers are OOP but all the books are available in kindle version sets: Set 1, Set 2, Set 3) 

So a quick update if you didn’t see my IG story on Thursday. 

(also, sidenote, links to both Instagram and to my email are in the left margin on desktop but I think they might not show up on mobile or in the app. I will try to figure out a fix for that at some point. Also, I’ve opened Disqus comments so people without tumblr blogs should now be able to comment on posts.) 

So officially my CT scan results are stable. Yippeeee! I have a bone scan next week and unless something really weird pops up there or I develop other symptoms, we continue on current treatment until the next scan 12 weeks from now. 

Now the nitty gritty: my lung is showing signs of fibrosis in the area that was radiated and the site of the pneumonitis. Nothing unexpected there - it takes about 6 months for lung tissue to begin to scar over and that is the process happening now. Still no explanation for the pneumonitis flare up but it might have been the fibrosis beginning or seasonal allergies. So that will be a thing to watch because it’s possible allergies will keep on triggering it. 

Now about the actual mets: on immunotherapy, scans can look wonky. Some lesions can increase due to immune activity - they swell as they’re infiltrated by immune cells. The CT scan can’t tell very well whether a lesion is enlarging because of that or because of tumor growth. Oncologists are starting to refer to these swellings as pseudo-progression and it’s becoming an important thing to assess carefully as you can imagine, as it can change prognosis and treatments drastically depending on whether there is real progression or just immunotherapy induced tumor bloating. 

I have a bunch of lesions staying stable, a number that are shrinking, and one in my liver which is slightly bigger. Why is it bigger? We don’t know. Could be progression, could be pseudo-progression. Overall my oncologist was super pleased. She told me she sort of expects a meandering process.  I mean of course, everyone wants the ideal, “all mets are shrivelling up” or even “we can’t see anything bad at all” but that’s just a very rare occurrence in metastatic breast cancer. 

And speaking of rare, I’m starting to become a rare person. 

19 months on first line treatment, still mostly stable. In triple negative metastatic breast cancer, this is not the norm at all. Let me put this in context for you. Close your eyes & stop reading here if you don’t like stats .... 

median overall survival for metastatic triple negative is 10-20 months 

So look, being 19 months in, on the first line treatment is pretty bloody amazing. 

Also amazing are these tomatoes that my neighbour grew and is sharing with me! I’ve been having so many lovely tomato salads. Really nothing like a fresh homegrown tomato. 

Ready for some more SEAL cancerlandia motivation? (This is part 2 of Margaret’s really not that motivating motivational posts. If you missed part 1, catch up here ; I’ve kept going: part 3; part 4!)

Get comfortable being uncomfortable.

This apparently is another fun motto (I have collected 7 of these in total so be ready for more of these “motivation”/enjoy the shitshow posts. You never know when I’ll spring one on you.)

So, apparently a super fun (by which I mean totally crazy thing nobody normal would want to do) thing SEALs do in training is sit down in the cold surf until they’re close to hypothermia and then go roll around in the sand until they’re well covered in painful itchy sand, including in all the uncomfortable private bits. They call that a good training day.

Here’s a totally irrelevant gif of dogs at the beach so we forget about the sand in the underwear bit

Cancerlandia is all uncomfortable. The poking, the prodding, the biopsies, the injections, the IVs, the surgeries, the positioning for tests and scans, the chemotherapy, the pain, the nausea, the vomiting, the numbing fatigue, the diarrhea, the dizziness, the skin problems, the random weird symptoms that only you have except you also find them on the side effects list from the manufacturer so maybe you’re not the only one?, the icing through taxane chemo to try to prevent neuropathy, the actual neuropathy when it inevitably strikes anyway.  

The existential dread of wondering if your treatment is working and if it is, for how much longer?

You’re gonna need a big bandaid for all that ouchie.

So yeah, if you’re going to survive here in cancerlandia for even a bit, you have to get comfortable being uncomfortable. Being uncomfortable – whether it’s physical or emotional - is something you will need to find a way to somehow accept. If you’re super zen, you might even embrace it, but honestly, you weird hippy, that’s going toooooo far! 

You can modify tons. You can – and should! – reach out to your oncology team and your peer support for symptom management and support. And lots of things are way more manageable now than they used to be. Pain management and nausea & vomiting treatments especially have come a long way. But there is no getting around all the uncomfortable things coming your way.

So you might as well get comfy with being uncomfy. It’s just sand in your underwear. Look, you’re on a beach, what’s there to complain about?    

As for me, I’m starting a little marathon of appointments:

R (today) – chemo

S- scan

T- immunotherapy (I hope!)

W – nuclear scan (hours and hours and hours of fun!)

W – shot (ok this is stupidly simple & minor but still, it’s another cancer *thing*)

F- telehealth with respirology

Anyway. Remember ‘seize the day’! 

Bonus! 

Navy Seal romance books recommendation #2 is the continuing Suzanne Brockmann series. Book 3 Frisco’s Kid and Book 4 Everyday, Average Jones, republished together as Tall, Dark and Fearless. (linking you to a Kindle edition which includes the books in this series) You know you want it! 

Cause I’m on day 4 of 0mg of steroids and the steroid withdrawal is making me all sorts of loopy so yeah, I AM. So I’m going to drop the first of what might be a series of motivation posts. Or it might be a standalone. Who knows, lol...  (ETA, look at that, there is a Part Two! now,  Part Three!! and Part FOUR!)

So, there’s a recurrent theme in cancerlandia.... all about how cancer made people better. Media loves this narrative. They love a story about a person diagnosed with terminal cancer who then discovers what’s important in life ... and has some epiphany... and they’re all joyous and blah blah (barf, barf, insert gagging noises from me)

As I was recently saying to someone online, I was the same person after my Stage 1 diagnosis. I did what needed to be done and got on with what I had planned for the rest of my life. Then I recurred as Stage 4 and I still don’t feel any wiser (in fact, on some days, between the stress and chemo brain, I feel definitively duller). This isn’t a growth journey for me. This is just a horrible circumstance.

And I leaned hard into the coping skills I developed over decades. You know the ones... anger and depression. Very helpful, I know. 

But it’s not for nothing that I’ve been in the hippy world of attachment parenting, extended breastfeeding and homeschooling. Self-help, meditation, yoga, fucking West Coast wooo are all adjacent to those worlds & that helped me not get too stuck in the anger & depression.  Thich Nhat Hanh’s book Peace Is Every Step is on my bookshelf somewhere. I’ve read Pema Chodron’s When Things Fall Apart twice now. (I should probably read it a third.)

But I will still defend everyone’s right to remain angry and bitter right to the end. You don’t have to ever let go of those. They can burn in a little corner and flare up whenever you want. It’s ok to keep them. & not just keep them – I mean really keep them. I’m tending mine carefully, feeding them little tidbits regularly and letting them out to scream and whine occasionally.

Nevertheless, if you’re facing cancer or another terminal diagnosis, you better get your good coping skills lined up and yes, you better figure out quickly what is important and what isn’t. Your time is suddenly limited and after your anger and depression are carefully tended to, you need to put on your big girl panties and get on with shit.

Now, as a rule, I hate warrior and battle analogies for cancer treatment (I might write more about that one day but for now just know – nobody loses the battle with cancer; medicine runs out of treatments and their body loses ability to self repair. That’s it. We need to stop with the battle language because we’re not warriors. We’re people with a disease. And anyway, it’s a tie. The damned cancer dies with the patient, so there.....) BUT, one thing I’ve liked for decades is the heavily romanticized world of Navy SEALS as portrayed in romantic suspense. SEALS get stuff done. My Harlequin and Avon Books etc SEALS are yummy and romantic and they’re my candy. 

So here’s one of the SEAL mottos:

The only easy day was yesterday.

Now I admit that I’ve had to sit with this one for a while. How the fuck is this helpful? I mean, some days suck so much and you think, really, that was the easy day? Tomorrow will be worse? But, here’s the thing. This is not an easy thing to go through. There will be hard days, and then there will be harder days. Know it now. Suck it up buttercup. You didn’t sign up for this, but you’re here. Try to enjoy the ride. And for me, it is helpful to know that it will be hard, harder and hardest. Just expecting that makes it easier somehow.

Get up (or don’t, if it’s a bedbound day or week or month – that is the reality, I know). Your GET UP might consist of opening your eyes. That’s it. CHAMPION! Yesterday was the only easy day. Be ready for this day, you’re strong enough for whatever comes, whenever it comes.

A bonus! 

I’ve decided to edit & make these posts even better with a book reccomendation because if you’re feeling down, you need some swagger and overcoming and all the good things triumphing stories. See my stash of SEAL romantic suspenses and romantic adventures? That was a quick one pass of my bookshelf...there are no doubt tons more but here you go. Let’s start with Suzanne Brockmann & her Tall, Dark & Dangerous series. My editions are twofers, two books in one: 

First up: Prince Joe & Forever blue, repackaged as Tall, Dark & Dangerous. Recommended! Find it, buy it borrow it, read it. Let me know what you think! (I’m going to link you gals to a Kindle version which has the first 3 books...because apparently mine is OOP now)