I (didn’t) feel it in my bones: The Transition to Stage 4 Metastatic Breast Cancer

Home » I (didn’t) feel it in my bones: The Transition to Stage 4 Metastatic Breast Cancer

I (didn’t) feel it in my bones: The Transition to Stage 4 Metastatic Breast Cancer

I slipped into Stage 4, also known as Metastatic Breast Cancer, without fanfare.  A report uploaded in my patient portal, a brief, low-key phone call with the PA from my oncology team.  “We’ll schedule the biopsy and figure out a treatment plan.  There are a lot of options,” she assured me.

An aggressive Inflammatory Breast Cancer combined with the sneaky nature of an invasive lobular presentation was always likely to lead to metastatic breast cancer.  I understood the risks but, along with my treatment teams, powered ahead optimistically, hoping to remain in the sweet spot referred to as “no evidence of disease.”  Every scan offered a chance to carry on as though this wasn’t really a race against time.

I didn’t expect a transition to Stage 4 to be accompanied by a parade of drummers and flag twirlers, but it was almost too quiet. An occasional ache in my rib that I noticed only rarely, often silent for weeks at a time. Sometimes, I’d roll over in my sleep and feel a sharper pain, but I attributed it to the pressure of the lymphedema pump’s torso piece, which wrapped around my chest and abdomen like ivy climbing a tree.  It was so inconspicuous that I never conceived of it as cancer and wasn’t concerned when the CT scan, ordered by the oncologist for routine surveillance, showed a lesion on rib #7.   “Likely a fracture,” the oncologist concluded.  After all the radiation I’d undergone, my ribs were weakened and prone to fractures.  A bone scan was ordered to rule out metastasis.

Instead, it ruled it in.  And just like that I’d joined the MBC (Metastatic Breast Cancer) Club; the Big Gun of Stage 4 that, even under the best of circumstances, irrevocably alters the vision of the future.  And it wasn’t just Rib #7; the scan (soon confirmed by biopsy) picked up multiple spots of malignancy across ribs on both sides and in my  spine.  Considered treatable but not curable, a diagnosis of MBC means I am continually tethered to chemotherapy and associated treatments that will likely leave me immune-compromised for the rest of my life.  There will be no completing treatment; only moving from one regimen to the next, hoping that drugs for advanced cancer will be approved in time to extend my life.  The statistics are cold and uncompromising; upon receiving a Stage 4 diagnosis, 99% of us will die from this disease.

Arriving home from work on the day I heard the news, I opened the door, glanced at familiar possessions nestled within built-in shelves, and suddenly envisioned my family packing them up after I’m gone.  I started thinking of all the places I’d never be able to travel.  Life always contains limitations but the diagnosis, and it’s demanding treatment regimen, made it less likely that I’d be jetting off overseas with any regularity.

Scan prep

I pondered the paradox of feeling energetic and healthy while at the same time harboring cancer cells who refuse to be reined in, no matter how ambitious the treatment.  Cancer’s end game mystifies because, if it continues to multiply and kills off the host, it dies too.  By taking me down, we both cease to exist.  Note to cancer; this seems like a lot of unnecessary self-sabotage.

Nine months into the Stage 4 experience, and with pain in the ribs becoming more acute, I am anxious about an upcoming scan.  Following a lengthy and informative chat with my oncologist, I learned that treatment resistance is all but guaranteed because cancer cells will mutate and outsmart the drugs designed to contain them. Although I’ve been sparring with this disease for nearly seven years, I realize that I haven’t yet arrived at the really hard part; the knockdown, drag-out fight that cancer will most likely claim as a win. The transition to Stage 4 created a permanent tear in the veil that shields us from a constant awareness of life’s brevity and there’s no going back.  I now live between worlds; firmly anchored to this messy, glorious life along with the crystal-sharp clarity that one day it will end.

Update: The scans came back with positive results and indications of good treatment response. No new areas of malignancy were identified.  Onward! 

6 thoughts on “I (didn’t) feel it in my bones: The Transition to Stage 4 Metastatic Breast Cancer”

  1. Surely. my daughter Clare is an inspiration to all women who follow her. Part of Clare’s purpose is to encourage other women (and sometimes men) during the course of cancer diagnosis and treatment. She can be also an experimental model for forthcoming medications, I have cited St. Cardinal John Henry Newman to Clare a few times regarding purpose of life. Here it is again: “Realize it, my brethren; —every one who breathes, high and low, educated and ignorant, young and old, man and woman, has a mission, has a work. We are not sent into this world for nothing; we are not born at random; . . . God sees every one of us; He creates every soul, He lodges it in the body, one by one, for a purpose. He needs, He deigns to need, every one of us. He has an end for each of us; we are all equal in His sight, and we are placed in our different ranks and stations, not to get what we can out of them for ourselves, but to labor in them for Him. As Christ has His work, we too have ours; as He rejoiced to do His work, we must rejoice in ours also.”

    –St. John Henry Newman

  2. Thanks for the update Clare, and the update on the update! This post seemed more reflective and, dare I say it, humorous than past ones. In some sort of weird paradox, struggling with long-term illnesses like this gives you a kind of advantage in terms of thinking about life. I’m not saying “OMG, you’re like so totally lucky!” but…I can see in your writing that you have tapped into a kind of knowledge or wisdom that most people never obtain, and I’m thankful that you are sharing it with us.

    As you wrote….ONWARD!

    John

  3. Nancy and Sherry

    Dear Clare, I’m always excited to see a new posting from you my inbox. That said, I’m glad you’ve been busy in a good way! And I DID see your Tiny Love Story in the NYT, and I was thrilled for you! Being published in that auspicious journal is one of those life goals that many, many people have and YOU HAVE DONE IT!! I truly enjoyed your love essay, as I’m sure many others did, too. All our best as you enjoy the “first weekend” of summer! Love from Michigan, N&S

    1. So good to hear from you, N and S! I didn’t dare put the NYT on my bucket list but somehow it happened. I was shocked! What a thrill . . . and I was told it will be in Sunday’s print edition. Much love to both of you and enjoy the beauty of an A2 spring (I saw pics from the peony garden . . divine). Thank you!

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