There should be a billboard outside the doctor’s office the day you’re diagnosed that reads “You’ve just left ‘It’s probably nothing.'”
Certainly it should be in every fortune cookie you receive from hence forward.
Still, it doesn’t keep me from trying in the dark of night to flee back to that place, despite the knowledge that from now on, it’s always going to be something.
Which is what happened three months ago on Labor Day weekend when my right breast – the one that’s been emptied of all natural tissue, nuked dozens of times for good measure and then stuffed with a silicone implant – inexplicably swelled up.
“It’s probably nothing,” I said to myself. “Give it a few days.”
By Tuesday the swelling was accompanied by a fever, so I called my oncologist’s office hoping for an easy solution, antibiotics called into my local pharmacy.
“Go to the emergency room,” said the nurse at the other end of the phone. “Unless your surgeon can get you in right away.”
It couldn’t be that bad, could it? I’d just had a CT scan the day before the swelling commenced that said the cancer is sleeping, no new tumors, no progression.
I phoned my surgeon who fit me in immediately. She seemed perplexed but not concerned, gave me the antibiotics I wanted and sent me on my way.
When the fever didn’t subside after a few doses, I called back and she sent me to see an infectious disease doctor.
Had I listened a little closer I would’ve heard the “click, click, click” of the roller coaster pulling me uphill during those few days. But I was still awash in the world of “it’s probably nothing.”
The infectious disease guy diagnosed it as cellulitis, a baffling bacterial infection in the skin. He admitted that without being able to test the bacteria, he’d have to guess at a remedy. He gave me a shot of Dalbavacin which kills off gram positive bacteria, then sent me on my way.
Two days later I was in the emergency room. My breast had doubled in size.
There were lots of needles, attempts to find veins that would give up blood, bruising and yet another shot of an antibiotic with instructions to call my doctors for a new round of appointments. It doesn’t sound like much, but it took all day.
I was sentenced to two weeks of daily antibiotic shots with a “we’ll see” follow up that took most of the day when you factored in the two-hour drive to the doctor’s office. Between the drugs and the fevers, I was exhausted. When the infection still hadn’t cleared in two weeks, the infectious disease guy sentenced me to another two weeks, but added a steroid just for good measure.
That seemed to do the trick. The redness turned to pink and the fevers went away. We set up an appointment for a two-week follow-up, all of us hoping it wouldn’t be needed.
Within a week, the fevers returned. I demanded the infectious disease guy put me in the hospital so that I could receive a continuous drip of antibiotics. He didn’t agree, but also had no more answers for me, so he passed me off to my surgeon.
Gratefully, she was compassionate enough to admit me. A new infectious disease guy prescribed new antibiotics, but warned that the problem could be bacteria stuck to the implant which no amount of drugs could fix. Surgery might be the only answer, he said.
They sent me home with a PIC line (a hose they put in your veins) so I could administer my own IV antibiotics for another month. Once a week a nurse came to flush the line and draw blood so we could tell how much damage all this medication was doing to my body.
The fevers stopped. The fatigue and pain minimized. My skill is still red, which could mean infection or could mean new blood vessels are forming (read: healing).
Last week I finished the IVs. Now I stand on the corner of Wait and See to find out if the fevers will return, if the bacteria is actually stuck to the implant or just roaming around my dermis. I have a surgery date set just in case.
I won’t bore you with the details of what that will involve – cutting skin and muscle from my back to repair the damage caused by a few rogue microbes.
I’ll just say that this is life now, where things that were once nothing now turn out to be something. I live in a world full of threats I can’t see or defend against. And yet, somehow, despite the scars, my body and I miraculously bounce back.
I may have left the world of “It’s probably nothing,” only to have entered the world “Ain’t that something!”
There’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.
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 METUP.org, 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.
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 Brain.fm (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.
It took me most of the day, but by the end of Friday I mailed off a 100-page financial assistance questionnaire and supporting documentation to Memorial Sloan Kettering. It’s amazing how complicated my financial life is.
More importantly, mailing off the package made me come to grips with the fact that medical debt has made my life unmanageable and I need help.
One of the first questions Memorial Sloan Kettering asked me was do I needed financial assistance. “No,” I said defiantly. “I got this,” I said silently to myself.
Yeah, right. Here I am a few months later realizing that I’m in over my head. Asking for help doesn’t come naturally to me. I’ve got to be in a world of pain to reach out.
I’m probably not alone. I may have cancer, but that doesn’t mean I am not proud. Asking for help takes a certain courage. Admitting that I’m powerless over both this disease and what it’s costing me. Admitting that I need something bigger than me to overcome it. It’s the first step.
Swallowing pride and asking for help isn’t something anyone counsels you on in disease management. And I have to keep in mind that asking for a hand up is not the same as asking for a handout. Sometimes it even requires me educating the person on the other end of the phone at the doctor’s office or hospital or insurance company. Quite a few times I’ve found myself emotionally explaining how what I’m dealing with is a pretty big deal and that I could really use the phone answer’s compassion in helping me out.
It’s all part of viewing myself in a new light. I think they call it “acceptance.” Acceptance that my body betrays me despite her best efforts. Acceptance that I will be on medication the rest of my life, medication that can be at times toxic and debilitating. Acceptance that all of it comes at a high cost. Acceptance that it’s a fight every day to keep all of these balls in the air, juggling, rotating and under control. And acceptance that despite it all, I will survive.
This disease has changed me in more ways than I care to count, and it’s not done with me yet. Today, I learn to swallow my pride, a luxury I’ve gotten to keep until now because my disease is slow growing and I remain healthy otherwise. Not everyone is so lucky. Take Susan Hadl, a Port Charlotte, Fla woman who’s been diagnosed with metaplastic carcinoma spindle cell, a rare, aggressive form of breast cancer. She doesn’t have the luxury of pride. She’s asking strangers like me to help her in her fight to stay alive by donating to a gofundme campaign. She’s one of 40 people with breast cancer with gofundme campaigns, including several men, who are pleading for funds to stay alive. They’ve learned how to ask. I admire them for that.
Tomorrow? Who knows what it will hold. For now, I live life one day at a time, helping those who ask and doing my best to ask the same.
Credit Karma – This is a pretty good Web site for anything credit. This links speaks exclusively to medical debt.
Bankrate.com – Best known for its updated rates for credit cards and mortgages, this site has some cool tools. This particular link has a few good tips on tackling medical debt and working with providers.
Bill Advocates– This site recommends many of the steps I’ve outlined, but it has a few good links and also is the first to caution NOT to use credit cards to pay the debt. Great advice!
MyFICO – This is the best site I’ve come across when it comes to explaining credit scores, what goes into them, how it’s weighed and ways to improve. The chat room is definitely worth it, as you’ll be with a group of people suffering the same way, some of whom have found a way out. You’ll need to sign up, but it’s worth it!
Credit.com – A fabulous explainer on ways your credit can be affected by medical debt along with links that can help you navigate, including samples of letters to write to providers, creditors or the credit reporting agencies.
Do you have any recommendations or resources? Please leave them in the comments section below.