Keeping Abreast of Ellen: The One with the Sequel

To quote Lady Whistledown, and because I feel strongly that this update (though far from gossip), is worthy of your time and readership, I will lead with:

Dear Gentle Reader,

Sequels are generally overrated. Mine is no exception.

I have been toiling for months over how best and when to communicate this difficult news to you. I settled on today as I am now seven months in, have dusted off my figurative pen, and truly have cause to give thanks. 

For those who need me to cut to the chase, here goes: Cancer has come knocking again. In fact it didn't knock, it let itself in through an open window and has taken up residence. Although it's contained to a few adjoining rooms (abdominal lymph nodes, ribs and pelvis), uninvited guests can travel in packs, so my awesome medical team and I are keeping a watchful eye for new squatters. 

Those interested in how this story unfolds can follow my new Facebook Page, Keeping Abreast of Ellen, where I'll soon post updates on key milestones, along with some pics to photo-narrate my journey. I won't have time to blog this time around, so figured this was a good alternative to keep those who wish to be, informed, and keep the writer and photographer in me primed and content. 

Now, for those of you who would like me to regale you with how this home invasion came to be, please grab a cosy beverage, sit back and read on...

On March 2nd of this year, after weeks of random abdominal and lower back pain, waiting for an urgent physician appointment and a scan that never came, I made my way to the emergency department with a rapidly expanding belly and no relief in sight. Scans showed that both kidneys and my liver were being compressed by ascites (peritoneal fluid) and not functioning properly. 

I was admitted, had surgery, then underwent various procedures to get these vital organs functional again. Two kidney, one biliary, and one PleurX (ascites) drain later, and I was stable Mabel. I settled into in-patient life, while my extensive medical team of urologists, interventional radiologists, internal medicine specialists and numerous residents turned to tackling the "Why?".

Enter my old foe, breast cancer. 

 

Analysis of the abdominal fluid revealed malignant cancer cells with the very same tumour markers as my 2012 breast cancer. Scans later showed cancer cells in my abdominal lymph nodes, ribs and pelvic bones, and this was officially declared a metastatic recurrence.  So it was that sometime over March break (when I really ought to have been cross-country skiing), I stumbled tit-over-tail into the wild and zany land of mBC - Metastatic Breast Cancer.

Metastatic or Stage 4 Breast Cancer, unlike my stage three predecessor, is often treatable but is incurable. It is considered a terminal diagnosis. I'll give that a minute to sink in. Depending on your type of breast cancer there can be first, second, or even third lines of treatment available. Or there can be none. Luckily, my hormone-receptor positive breast cancer fell into the first category.

 

Unfortunately, my kidney and liver complications had weakened me to the point where chemo (via pill form) was not a viable option. Instead, another targeted cancer-killing therapy was available. So off we set to try that on for size.

I was discharged as March went out like a lamb, and with the help and savoir-faire of friends, set up my home care sanctuary. First they secured a hospital bed with a therapeutic air mattress. Next came my cane, "Michael", my walker, "Alan", and my wheelchair "Wheel.I.Am". I then started receiving weekly shipments of medical supply boxes, enough to forge my very own life-sized room divider. I have since replaced said monstrosity with a lovely cherry-blossom motif panel.

I was soon inundated with a relentless stream of phone calls from the hospital, rivalled only by the line of home care visits they generated: nurses, physicians, an occupational therapist, dietician, personal support worker, psychologist, and all of the various care coordinators. There were regular hospital follow-ups with my team, and a battery of tests and bloodwork to be completed and repeated ad nauseum. Sleep was scarce but also non-negotiable; my body took charge and rested when it could, at the expense of managing my household affairs.

I started my targeted treatment in April on the day the moon eclipsed the sun - a fitting entrance for this (fully funded) $8000/month wonder drug. Sadly, I lasted just 8 days before rapid deterioration from toxicity triggered muscle wasting, vomiting and severe weight loss, and brought everything to a spectacular grinding halt. I had dropped 35 lbs in just under two months (my starting weight was 105 lbs) and this, coupled with my functional impairment, meant treatment options were no longer on the table <insert expletives>.

I was called back to the hospital to be handed the jaw-dropping news that I was being discharged from cancer care by my apologetic oncologist to a team of palliative care physicians <insert more expletives>. 

So I took a deep breath, pulled back the heavy curtains of dismay, and entered the even more surreal land of palliative care. Its goal and my new plan was "pain and symptom management and prolongation of life". No more talk of attacking the cancer; our focus was now to make my experience comfortable as I prepared for the worst. And the worst was expected. I was told I had just a couple of months left. That was the third week of April. 

Well, I was having none of that nonsense, clearly! A realist and planner by nature, I leapt into overdrive on all required preparations: End-of-life discussions with my kids, executors and closest confidants, cemetery plot selection, celebration of life planning, and endless hours (ongoing) completing Pay, Disability and Pension paperwork that has consumed my days and my dreams. Footnote: Don't have a will or have an outdated one? Get on that, now. I did all of this on auto-pilot, knowing and feeling in my core that I was not dying anytime soon. 

And so I didn't. I kept on living, and in May and June had an "unexplained and spontaneous improvement," with stable scans showing no evidence of further disease progression (beyond the known metastases). On no treatment. My body was listening to my mind.

By late June I thought, enough's enough, let's do something else here - so I rang the cancer centre and demanded that my oncologist see me for a reassessment. Would you believe, although the severity and prognosis of my cancer had remained unchanged, I was now functionally able to have another go at treatment? <insert euphoric shout>? In fact, the new nurse who had never met me did a double-take, stating "the woman in this file is NOT the woman who stands before me." I said, "Oh! That was April Ellen. She's left the building."

After a stellar examination, I immediately re-started estrogen-blocking injections, ones I had originally attempted with the failed treatment in April. I have since completed five more rounds and am getting more adept at handling its main monthly side effect, profound fatigue. It now lasts about 5 to 7 days instead of 14, and is far milder, after which I slowly resurface and resume a fair degree of mobility and functionality. 

As I was tolerating this monthly therapy, it was the recommendation of oncologists on the tumour board in July that I add a second treatment - a targeted therapy taken orally on a three-weeks-on, one-week-off cycle. This was the best news ever - options in the form of 3 potential drugs - and brought me new hope despite the possibility of more side effects. But I swore to cross that tired old bridge if it presented itself, as worrying prematurely irks me. Besides, I was quite accustomed to change, in fact it was to be expected. Change brings action, right? I needed action.

Let's skip August and September which while otherwise were lovely, were spent in massive delays sorting through drug funding approvals and miscommunication with you guessed it, Canada Life Insurance. My Public Service friends can join me in a collective "gros sigh". 

Which brings us to October. I started Cycle 1 of my brand new treatment on Oct 4th! Blasted "Friday I'm in Love" ("with Palbo") - my nickname for Palbociclib - while cradling its drug packet and belting out the lyrics with tears of joy after swallowing that first cancer-killing pill. But alas I again fell victim to the 8-day curse, on which severe side effects took me down to the point where my oncologist recommended I press pause on my treatment's cassette deck. On a Friday, of course. Our plan moving forward is to grab a pencil, carefully rewind the tape, then hit play in a few weeks to see if things sound less distorted. Possibly at an adjusted playback speed. Let's see where the music takes us. Hopefully back to The Cure...bahaha!

So how are we all doing with all this, you may ask? Truth be told, while the emotional guillotine of a mets recurrence was swift and severe, the kids and I have since located and reattached our heads, carried on, and are navigating the swampy moat of unpredictability with a tonne of support, guidance and most importantly, each other. MBC truly is one day at a time, and unfortunately Schneider isn't always there to fix things.

Interestingly, what takes me down on the daily is my continuous struggle with some rather basic, mundane tasks: walking about (lack of muscle), meal prep (I can't stand up long enough to cook), coordinating rides to appointments (I can't drive on current pain meds), laundry (I can't do the stairs, or the lifting), household cleaning (depletes my energy), and the disruption of housing me on the main floor (my bedroom and shower are upstairs). 

Thankfully, I have a small but mighty hive of helpers who take on many of the weekly meal and ride fairy needs of our family. This initial inner circle of "must-know" contacts was able to drop everything and directly support my family's immediate needs - and wowsas did they deliver! My incredible gatekeeper has been a true champion at triaging messages and coordinating my happening hive these past 6 months. Communicating tasks and updates to this core crew is a full-time job, even with only a handful of people in the know. 

For this reason I decided not to widen my circle beyond what was manageable and needed; my focus was survival and stabilization. It worked. I am both surviving and stable (at this, the time of writing). I now feel I am ready to broaden my support circle ever so slightly, give these folks a break, and perhaps welcome a few new worker bees to my hive. Should you wish to join us in some capacity, or would simply like more details on my current gaps/needs, please email me directly at: keepingabreastofellen(at)gmail(dot)com

Tip: Putting "Hive" in the subject line will make my life easier. A bee pun? Appreciated! In fact I have one to get you started:

What is an American bee called? A USB. 

I have one more thing to share and this one is a happy one. This month is Breast Cancer Awareness month which for me the past five years has been a call, no, a cry to action for the mBC community. Metastatic disease receives far less attention and funding than early stage detection (also extremely important), but is so much more devastating when it hits, especially among those diagnosed at a young age like me. 

I have chosen a friend's legacy - Turning the Page on Cancer in support of Rethink Breast Cancer's mBC fund, to direct my own fundraising efforts. The project will culminate in a day-long virtual Read-a-thon and Day of Self-Care on October 27, 2024. Will you help me reach my personal goal this month? If so, visit my donation page to support our fabulous Team, Readers Gonna Read {for mBC}, where you will find our founder Samantha Mitchell's incredible story. First diagnosed at age 24, it will give you goosebumps, and your support will directly benefit the mBC community I proudly belong to. Let's try to raise mBC awareness and action, and fund vital mBC initiatives for all of us racing against time in this disease!

So there it is, dear readers, the unfortunate fortunate update that I am so thrilled to be able to share with you as this weekend of thanks comes to a close. I am forever grateful for all of the wishes that I am sure will pour in from this post. Rest assured that I will read and cherish every one of them with heartfelt delight, but will not promise a reply in any respectable time frame. I must continue to direct my limited energy into managing my health, my family and our household - which includes a requisite dose of photography to connect with nature and to feed my soul. I know you get it. Photobombs are always welcome in my lens!

 

Please know that connecting with you brings me joy and healing, always. I wish you love, health and strength, and am sending many hugs your way as you process my news. I promise to keep you abreast moving forward. Know that I am living, loving and appreciating every day that comes to me, as we all should. Today is a very good day indeed, with so much to be thankful for.

Yours,

Ellen