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 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.

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 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.

 

Swallowing pride, asking for help

Asking for helpIt 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.

 

 

 

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Resources for keeping your credit clean while paying off medical debt

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.

5 ways to keep your credit clean while mired in medical debt

medical debt

  1. Prepare for escalating medical costs by taking a hard look at your current household budget and expenses and see if there’s any place that can be cut.
  2. Make friends with the billing people at the hospital and the doctors office. Let them know your circumstance and ask them to work with you on a discount and payment plan.
  3.  Ask the billing folks or a hospital social worker about financial assistance programs. Likewise, ask them if any of the drugs they’re prescribing have a pharmaceutical co-pay assistance program.
  4. Check your credit report to be sure medical debt isn’t showing up on it. Familiarize yourself with ways to get bad marks removed from your credit report by going into the chat room of www.myfico.com.
  5. If a bill does show up on your credit report and you can’t get the credit reporting agency to remove it, call the creditor and see if you can negotiate having the bad mark removed if you pay off the debt

Do you have any recommendations or resources? Please leave them in the comments section below.

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How to keep your credit clean when mired in medical debt

paying off medical debtWhenever I have questions about credit issues and how to best allocate money, I call my friend Joan Reading who heads the nonprofit Credit Counseling Center, which has a few locations in suburban Philadelphia.

CCC helps people dig out of credit card debt, plan for future purchases such as a house and raise their credit score so they can get the best deals out there, all for free.

What I love about Joan, is that no matter what I ask her, she always gets me to immediately focus on THE most important thing. So when I pitched this blog post to her, the first thing she said to me is: “Your biggest challenge is your health and staying focused on that.” Suddenly, I felt like a human being and not a hot, steamy mess.

And then Joan gets practical. “If you are incurring any debt, first thing to do is examine household expenses. Cut or eliminate other expenses to leave room for growing medical expenses,” she said. The idea of “growing” medical debt makes me shudder. But I know that’s a reality I have to brace for, as is so much about spending the rest of my life living with an unpredictable disease.

Then, she speaks to me as a writer: “Get creative,” she said. Whether it’s food costs or cutting back on things I don’t need to spend so much on such as cable or a data plan on my phone, I can look at is as a creative challenge and not as deprivation. She tells me to keep in mind, there’s nothing out there “more important than YOU.”

“Contact the medical provider and ask if there is a payment plan you may qualify for based on your current income.  Try to negotiate a lower repayment plan,” she advised. Check. Done that.

“Medical debt in and of itself is often not on your credit report. When the debt goes to collection for non- payment it shows up on the report with the collection agent,” she said. And that’s where I need to be wary, so start the conversation early, she said.

“It is best then to make even a small payment towards the debt. Many hospitals will take small payments,” she said.

Like my friend Tina Jordan who dug herself out of $1 million in medical debt, Joan tells me to examine medical bills critically. “There are often errors with coding the bill, which plan covered what item. Question the items on the bill for accuracy.  Humans make mistake all the time,” she said.

Yes, I’ve waged that battle and so far lost it, although I’m waiting to see how the financial aid end of things will play out.

“Bankruptcy is a remedy used by many when the debt exceed their ability to repay any debt (except student loans). It’s the last resort but usable for medical debt,” she said. Please, let’s not go down that road just yet, although millions of people do each year, according to NerdWallet Health.

“Reduce other expenses. Ask for help from family, medical providers, legislators, and drug companies if they have access to less expensive drugs,” she said, echoing Tina’s advice.

“The bottom line is your health, then planning,” she said. You can see why I like Joan so much.

 

 

 

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How one diagnosis can wipe out a lifetime of good choices

medical debtOne of the frustrating things about having a severe or life-threatening illness is that it can in one fell swoop annihilate all the goodwill you’ve earned from a lifetime of good decision making.

And it’s not just your health that’s impacted. It’s finances as well, as I’ve been writing about. One place it can have a tremendous impact is on your credit report.

Credit is a rather fickle thing. I opted to destroy mine by living in France for a year, back when computers weren’t so prolific and it would take overseas bills months to show up on my credit statement. After that, I laid low, spending only what I could afford and keeping only one credit card open. After a few years,  I decided to apply for a car loan, only to find that my credit had repaired itself over time. A few years after that, I found myself nearing 800 – which is an A+ rating – when I went to apply for a mortgage.

And then, something strange happened. Several bills went astray, leading to late payment notifications on my credit report, which penalized me harshly. When my score fell dramatically, I started to pay close attention to how my credit score was calculated and what I could do to improve it. I wrote letters to creditors, then the credit reporting agencies. I was able to get a few of the bad marks removed, but not all of them. Again, time was the great healer.

During that time, Congress passed the HIPAA privacy act which I learned prevented creditors from reporting medical debt, as it violated privacy laws. About that time, some obscure bill showed up on my credit report (which I don’t think was mine) claiming I owed a doctor $35. I cited the act in a letter to the credit reporting agency and had it removed.

Despite that little known loophole, a recent study by the Consumer Financial Protection Bureau found that medical expenses comprise more than half of debt on credit reports and roughly 21 million people with medical debt (which account for nearly half) showed no other signs of financial distress – meaning that up until being diagnosed with something, they’d been making really good choices.

And yet, despite those good choices, in 2013, nearly 2 million people filed for bankruptcy because of medical debt. It was the No. 1 reason for filing, despite many of them having health insurance, according to NerdWallet Health.

The CFPB found that confusing medical bills caused the biggest headache for consumers, leading to credit reporting problems. Specifically, the authors said that it often is difficult to tell from insurance and hospital statements how much is owed, the payment deadlines, and which organization to pay.

Tell me about it. I get a bill from the hospital, another from a doctor that shows she’s discounting a portion of the hospital bill and none of the figures of either bill seem to correspond to what shows up on my health insurance statement. Nor do the amounts owed or paid.

My friend Joan Redding of the Credit Counseling Center – whom I’ll talk about tomorrow – offers some good advice, including negotiating with the hospital before it goes to a collections company, which is where credit problems begin.

That’s where I’m at, at the moment, working with my medical providers to find a solution and doing my best to stay away from tapping my retirement funds.

And I’m hoping a pattern of good decisions will pay off in the end.

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