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*Editor’s note: Elephant is not your doctor or hospital. Our lawyers would say “this web site is not designed to, and should not be construed to provide medical advice, professional diagnosis, opinion or treatment to you or any other individual, and is not intended as a substitute for medical or professional care and treatment. Always consult a health professional before trying out new home therapies or changing your diet.” But we can’t afford lawyers, and you knew all that. ~ Ed.
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I wrote this during a night when I was wide awake, sitting in bed between two worlds while looking at a photograph that I had taken of the full moon while crossing over the Ambassador Bridge that connects two counties by way of Detroit, Michigan, and Windsor, Ontario. Between extreme fear and hope, between two different breast cancers, two different countries, and the woman I am fighting to stay writing has become a way to thread myself back together.
I’m sharing this in case it helps someone else hold their own life together when it feels like it’s unraveling.
Two Shores, One Body
A Cancer Diary
Two shores. Two countries. Two cancers.
Dual citizen. One life.
Detroit to the right. Windsor to the left.
Two places I will always call home.
Two identities that have always lived together in me, seamless, not split.
The best of both worlds.
This year has echoed that same duality in my body: two breast cancers. Two treatment paths and one woman trying to stay whole.
I have Stage IV metastatic breast cancer, the kind that requires constant tending, constant awareness, and constant courage.
I hate talking about it, but writing is cathartic, and I write mostly privately, and now a little more openly especially since I’m awake all hours of the night and sometimes it’s good to do a brain dump of sorts. Put it out into the void and call it a day, or in this case, “a night.”
This past year brought a new Stage I cancer, “dueling” alongside the Stage IV already in my body. The irony is not lost on me.
To treat it, I needed chemotherapy, but chemo could not be combined with the targeted medications keeping the Stage IV in remission. That cancer never responded to chemo, and nothing has changed in that regard.
So, with great reluctance, I had to stop the targeted medications that kept that beast at bay because combining treatments would be too harsh on my bone marrow, kidneys, and liver.
As a result, while I fought one fire, another was allowed to burn…and boy did it ever: brain metastasis, bone and rib progression, new lung metastasis (possibly).
And what kills me…or not yet…is that the chemo didn’t even remove all the new stage 1 cancer! And because of that, it meant change of trajectory with the suggestion more severe, perpetual, and aggressive chemo treatment that in my opinion was not currently warranted.
Suddenly, I became a reluctant researcher again with a scrambled brain.
What followed was fear and sickness in its purest form. Illness layered on illness. I haven’t even had a chance to breathe and process everything that I’ve gone through this past year.
Initially, I was thinking that maybe that’s a good thing, but maybe it isn’t. I haven’t decided yet.
An 11-hour surgery, a five-day stint in the ICU, then a sudden secondary surgery weeks after to save my beautifully remade breast out of my own body’s tissue from dying, and another four- or five-day hospital stay awaiting an MRI that never came while in hospital.
While I was there, learning I had brain metastasis and brain inflammation. Gamma Knife brain radiation soon followed.
More scars. Just more.
More lost sleep. More of watching the sunset and then watching it rise while still awake. More breaking down. More feeling like giving up.
To add insult to injury, basic words were now suddenly slipping away. My mind soon felt distant from me, and I was scared in a way that I don’t even have language for, literally…because I was having trouble speaking and articulating words and thoughts, as well as navigating treatment and the most basic of things that come with having brain inflammation after radiation (and prior) around the cancerous lesions.
I could feel myself getting easily confused as well, which absolutely terrified me. And then, I would suddenly be totally okay! The steroids helped with that.
Again, the duality.
During, I kept advocating for myself and going up against a large hospital system in Michigan. Regardless, no cancer patient should have to deal with the bureaucracy of a mega hospital while trying to stay alive.
I’ve learned that sometimes survival means being the one holding the map, even while you’re burning.
I’m grateful for my husband being my wingman and sometimes steering the ship because I can be incredibly stubborn in that regard.
After being slammed with one bad thing after another, yesterday, I consulted with my old oncologist for an opinion. I was grateful she agreed to see me, and I found the road forward, one I already knew deep in my heart.
I had to be seen, heard, and understood, and not as a financial number, as my other oncologist wanted me on an indefinite chemo, and the side effects were too much to bear. It probably would’ve killed me.
Most importantly, I’ve learned that things are not as dire as I thought they were.
My stage 1 cancer will now be treated with Kadcyla, a therapy designed with intention. It will be every three weeks for one year as long as my heart can physically tolerate it. The heart has similar receptors, so it’s not immune to this medication, but it is what it is and will be monitored over the next year and after for a little while.
This treatment is magical as it’s targeted, focused, and carrying a tiny chemotherapy “backpack” that delivers medicine straight into the Stage I cancer cells like a glitter bomb for the disease that tried to surprise me.
And if you know me, you know I hate surprises…and glitter, but hey, let’s surprise this new beast of a cancer, shall we?!
Quid pro quo, Clarice.
It also crosses the blood-brain barrier. Just in case.
And I won’t have to manual cold cap again to save my hair like I successfully did during my 12 rounds of chemo this past summer. I’ve always likened that experience to a boxing match: a championship fight with 12 rounds.
In that regard, I emerged the victor!
However, it does cause severe crippling neuropathy, so I will have to ice my hands and feet during the infusion.
Not looking forward to that, but it is what it is.
Plus, my Stage IV treatment is being shifted as well to a medication that follows cancer wherever it tries to go: bone, brain, lung, blood, liver. It crosses the blood brain barrier too, so there is nowhere left unguarded.
The side effects may be heavy, but I am not afraid of difficult roads because I have walked them before.
What I am protecting fiercely is my sense of self and mental well-being. My femininity. My reflection. My ability to look in the mirror and still recognize my own puffy steroid face, because if I look sick, I will mentally tank.
I’ve already tanked physically and won’t be able to climb out of this proverbial hole if much else happens, and I don’t want to get to the point where I don’t care whether I do or don’t.
This is not vanity.
This is identity.
This is my thread back to myself.
“Quality of life over quantity” my father used to say during his own battle with metastatic brain cancer.
I am buying time in a currency that is incredibly foreign to me.
(What’s current the exchange rate on that?!)
Last night, on the Bridge, between the shores of two different countries, the full moon lit the river silver, as if it were the seam between two worlds, but a seam is not a divide. A seam is what holds things together.
And that is exactly what I intend to do with myself.
For the first time in ages, I can feel my body ease, and I can fully exhale with restored hope and can see my way across.
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