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My metastatic breast cancer recurrence: "You first" and other lessons

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JSchoger.jpgby Jody Schoger

I was doing what I do every day: advocating for breast cancer survivors through various social and traditional media outlets. I advocate, write, review grants, educate, read research studies and, yes, even joke about it when conditions are right.

Until this year. Last Christmas, there were some physical changes I couldn't ignore. I blamed a sudden weight loss on stress. It simply did not register that cancer was about to re-enter my life after a 15-year remission.

But it did. I was diagnosed with metastatic lobular breast cancer on my annual visit to MD Anderson's Survivorship Clinic in April.

Coping with metastatic breast cancer recurrence
Cancer is wily. Invasive lobular breast cancer is especially so. It doesn't always cause lumps and can be difficult to image. The cancer skipped my remaining breast for better territory, landing in the opposite lymph nodes under my arm, then traveling up into my neck before traveling into my abdomen.

For me, acceptance comes in moments. It isn't a steady state, but a series of overlapping realizations where each one is deeper than the last.

I've yet to find a workable metaphor for incurable cancer. Cancer isn't my last stand, nor is it a battle with a winner and a loser.

I want to be as well as I can be for as long as possible. I try not to blame myself, or anyone for that matter. Things happen. Cells mutate for reasons even scientists can't always pinpoint.

What I've learned through metastatic breast cancer treatment
When I experience gentle moments of acceptance, I notice recurring themes.  

Here are a few things I've discovered about living with stage 4 cancer during the past six months:

  • Life isn't over; it's different. I'm in active breast cancer treatment again. Although the treatment itself is an oral medication and monthly shot, it's easy to forget the actual amount of time treatment takes. Metastatic disease involves frequent testing and scanning to gauge a therapy's effectiveness. During my last set of scans, the waiting room felt like familiar territory where I recognized the employees instead of this brave new world I was entering for the first time.
  • Ask about everything. Yes, everything, especially the questions you think are outrageously stupid. Your mind can empty out with any cancer diagnosis, especially a metastatic one. You can ask the doctor (again) if he's really sure it's cancer.  He/she understands you're grappling with something that's difficult to digest. I've found that some of my "stupid" questions are actually about issues that frighten me the most.
  • Hit the refresh button. Cancer isn't everything. It can and does rob me of energy, but if I don't feed my interests and abilities with the topics and subjects that make me tick, I'm feeding the illness, not my health.
  • No progression. My favorite words are now "no progression." This means exactly what it sounds like: cancer is at a standstill and even shrinking in places. These words leave me grinning from ear to ear.
  • You first. This sounds obvious. On airplanes, flight attendants tell you that in the case of an emergency, you have to grab the oxygen mask and breathe deeply first before you can offer oxygen to your child. Taking care of yourself when you have cancer is the same way. I need to take care of my health, first and foremost, every single day.  No weeks at a time of ignoring important feedback. Pay attention.
No one else can prescribe the right ample amount of rest, work and play needed to keep you doing your best when you have metastatic cancer. Some people can work full time with energy to spare. Some take time back and cut work hours down significantly to spend more time with family and friends. Others need more time to deal with their treatment and its side effects.

The only "good" way of coping is the way that provides you and your family with the best possible life.

The importance of adjusting mentally
While my work as an advocate carries a special urgency for me now, it can't become so all-encompassing that it threatens my health. As many others have said, "There isn't a stage 4. Just don't go there."  

Adjusting to the diagnosis is mental. The faster I become grateful for being fully engaged in life, the faster my balance restores. That one thought rights the scale in a gentler, more realistic way. 

There is much more to be gained from this phase of my life than I ever imagined possible. It's a difficult, but at times amazing, path we're walking.

5 Comments

I've long recommended what I call "Airplane Rules" - you first, then others - for all of us who are working to drive change, in any sector.

You're an inspiration and a beacon, my friend. Keep that light shining, and always remember to charge your batteries. We want you around as long as humanly possible.

Beautifully written. Thank you.
All the best to you .

Thank you, Jody, for your candor and honesty. May the peace and presence of Christ rule and reign in your heart and mind. Praying for you.

I enjoyed reading your story. It was very encouraging God bless and thank you for your words of inspiration and honesty.

Hello Jody, I read your story because I just entered the survivor program myself here in Ohio. I am going to think of myself in remission, too. I have changed my diet significantly, which has improved my health overall. Each cancer patient or survivor should have a sense of urgency and a positive outlook like you have. We have to be the change we want to see in our lives, and our health must come "first." Thank you for sharing your thoughts, and God bless you dear.

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