Monthly Archives: August 2017

What do you do when you get that kind of news? Part 2

full sail aheadThere’s nothing like a cancer journey to show you that life’s twists and turns are sharp curves along steep drop-offs. Take my friend Beth Caldwell whom I last wrote about.
She announced that her cancer had spread to a place where it couldn’t be treated. Doctors gave her four months to live.
She’d accepted her fate, decided to forgo further treatment, spend her remaining time with family and friends.
And then there was a follow-up test to confirm the diagnosis. Except this test didn’t confirm it. Not a single cancer cell was found. Just like that, life was ripped out from under her, then handed back.
Which again begs the question, what do you do when you get that kind of news? My friend, I can only imagine, feels like a spinning top anxious for a place to land. After coming to grips with no further treatment, doctors now have for her a new battle plan, new procedures, new drugs and new side effects.
Overwhelming? I don’t think that word does it justice.
While her situation is extreme, it characterizes the challenge I’ve been writing about this past week or so – living with a disease that can derail us at any moment while we try to get on with our lives, reach our goals ¬†and overcome the normal procrastination and everyday obstacles that fall in our path.
Knowing this, I am trying to construct new habits that will steel me against the ups and downs of the disease. My goal for the month was to try some lifestyle changes to see if they have any impact on my disease – things like intermittent fasting, interval training and meditation. There’s research to show these habits lead to positive genetic changes that fortify healthy cells and/or starve cancer cells.
I failed on the first day into my planned changes. Normally I would beat myself up over such a gaff. But instead, I’m looking for ways to regroup. Spending time examining my failure and finding ways to do it differently next time.
For one, I came across this story by Jeff Haden of Inc. magazine in my Twitter feed about an easier way to incorporate intermittent fasting into my life. That led to a video with more details by Dr. Eric Berg giving some great tips on getting started. He made a subscriber out of me.
I also came across a clinical trial that doesn’t require tumor testing or tumor tracking to become a part of it. Instead, it combines Metformin, a diabetes drug, and grape seed extract and tracks changes in the bloodstream as a way to counteract cancer cells. I intend to ask my doctor about it next week when I see her.

I don’t expect any of these changes will cure me. My hope is that they’ll enhance the effectiveness of my treatment, keeping the disease in check for a longer period of time until a cure can be found.

I may be living with an unpredictable disease that doesn’t have any answers, but I can still tack and jibe when the wind shifts. I intend that my sails will always be full.


What do you do when you get that kind of news?

Late last night, as I fought to hold my stake of the six inches of mattress that wasn’t occupied by my sprawled-out labrador or my pinned-in husband, I found myself scrolling through Twitter.
It’s amazing how many folks are posting at odd hours of the morning. I hadn’t been on the site all day and it seemed that quite a day it had been in the Twittersphere. That’s when I came across my friend Beth Caldwell’s post:

So, I have some bad news. Yesterday I found out that I have leptomeningeal metastasis. Median survival is 2-4 months. I have decided not to continue treatment and to instead enjoy the time I have left with my family. It has been my great privilege to be a co-founder of¬†, a movement of people with metastatic breast cancer fighting to keep each other alive. I ask all of you to keep fighting for more and better research for MBC. It’s too late to save me, but it’s not too late for others.

Beth and I share a similar name, a breast cancer mets diagnosis, the same political bent, a sense of humor and a fiestiness that has kept us alive. In this war, Beth is a general. When doctors, pharmaceutical companies and the FDA said to her “you don’t fit our clinical trials criteria,” she responded by saying “What’s that? You’ll need to speak a little louder. I can’t hear you.”
When doors slammed in her face, she kept knocking. When no one answered, she found a window to climb in and announced, “I’m Beth. I need some help. I guess you didn’t hear me.”
When her tumor sequencing came back showing itself similar to a type of colon cancer, she fought insurance and drug companies to get a colon cancer drug that held promise but wasn’t approved for breast cancer – a huge, recurring problem in the fast-changing world of cancer research and treatment.
When that didn’t work, she fought the FDA and pharmaceutical companies to get into an immunotherapy clinical trial that barred people with cancer that’s spread to the brain, where hers had lodged itself.
She joked and posted photos while undergoing gamma knife treatment for the tumors in her head. She shared her pain and anguish that the drug Keytruda caused in the clinical trial. We all saw it as a sign it was working and cheered her on.
And now, this. A point we all come to, particularly with a disease that has a 90% fatality rate.
That unsettling fear that I’ve been writing about suddenly announced its purpose – it’s been serving as a mask for grief.
Grief for the people I’ve lost, like my sister who’s death anniversary is Sunday. Grief for the people like Beth, whom I’m losing. Grief for myself, for what might of been, for what will never be.
Somewhere, though, in the silence of the early morning hours, came a realization, the thing I couldn’t put my finger on in my last post. That this journey comes with its bumps and boulders and grief is always going to be among them. My challenge is to find a way to integrate that into my life without the despair that holds me back from living or accomplishing what I’m trying to do.
And in that moment, I formed a wish for my friend: Beth, may you have a magnificent death, surrounded by the love, honor, respect and admiration that we all feel for you. May you exhale your last breath with hope in your heart. Once your spirit is freed, please visit. Send me a sign to let me know you’re there. And know that I will be carrying on the fight with you in my heart, harnessing the hutzpah you’ve shown us and smiling fondly as I ask myself “What would Beth do?”

Suddenly, grief lost its hold on me.

When everything falls apart

I had a plan for this week, an ambitious, experimental plan. I wanted to try a new diet that’s recommended by body-builder-cancer researcher Dom D’Agastino, who hails from my college alma mater University of South Florida.
Dom has found that feeding the body ketones rather than carbohydrates allows healthy cells to proliferate, while starving cancer cells. In laboratory mice, the diet has nearly doubled their cancer-plagued lives.
The diet calls for feasting and fasting, piling on good fats and dialing back on carbs. I’ve been toying with the idea of trying it and this week decided to take action.
The plan was a three-day fast, then going easy on carbs while bulking up on protein, cheeses and lots of vegetables. Sounds simple, right?
It was, until I woke up with this unsettling and unfounded fear that was intensified by the coffee I drank. It followed me around all day, no matter what I tried to do to shake it – walking, meditating, listening to my new indulgence (check it out, it’s worth it!)

The longer I went without food, the worse it got. And the more intense the pressures of the day seemed. By the time my husband got home from work, I threw the towel in on the whole idea and offered to take him out to dinner to share our woes.

Of course, now it’s thrown my whole plan for the week off. So instead about writing about starvation, I’m switching gears and writing about how to get back on track when you get derailed. This is a problem we all face, but moreso for those of us with cancer because our disease can move from the back burner to the front burner at any time. It can make it hard to get things accomplished. It definitely makes life frustrating.

I’m open to ideas here. What do you do when you’re plan gets derailed? What do you do to get back on track? Or do you just abandoned it all and move in whatever direction life has pointed you in? Please share. I’m all ears.