Category Archives: File Under I’m Going To Have To Fight If I Want To Make It Out Alive

Help wanted: asking for a friend

Long ago (well, maybe 15 years ago) and far away (ok, eight blocks down the street) a single mother was raising four teen-aged children bordering on adulthood, earning her living as a house cleaner when she was diagnosed with breast cancer.
She didn’t have health insurance, so whatever symptoms she had she ignored until she couldn’t ignore it any longer. When she was diagnosed, her doctors offered little hope.
She did her best to continue working until the disease got too much. Her children took care of her until the end. When she died, her children settled her affairs and dispersed. Some got married. A daughter got a job as a bartender and moved into her own apartment. One son had a grandchild she never had the chance to meet. And then another.
At the time, there was no Obamacare, so even if she had made enough money, she couldn’t buy health insurance. In truth, even under the Affordable Care Act, she couldn’t afford it, which meant any care she received was likely funded through charity care at the hospital. And that meant, her doctors didn’t discuss cutting-edge treatment to prolong her life because they wouldn’t be compensated.
And that meant, she had no hope, leading to a grueling and premature death.
Right now there’s a bill before Congress called the Metastatic Breast Cancer Access to Care Act (H.R. 2178). It’s the second time it’s been introduced, sponsored this time by Republican Peter King (NY-2) and Democrat Kathy Castor (Fl-14). A companion bill has also been introduced in the Senate by senators Martha McSally (R-AZ) and Chris Murphy (D-CT) as S. 1374. If passed, it would waive the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare coverage.
With a median survival rate of three years, most metastatic breast cancer patients won’t live long enough to receive Medicare under the current regs. That means they die in debt which they leave to their grieving family members or for the taxpayers at large to pay through charity care reimbursements hospitals receive from the government.
A study last year by the American Society of Clinical Oncologists found that 25% of cancer patients also suffer from financial toxicity, meaning they don’t have the money to pay for medical care or household expenses due to their disease. The result: they forego medication, tests and doctors appointments, leading to painful and tormenting premature deaths like the one I’ve described (which is a true story).
“The current safety net system is more tailored to the needs of individuals with chronic and long-term illness that undermines their ability to work, and does not meet the needs of individuals facing catastrophic events and complex ongoing care,” said Michael Kovarik at METAvivor, a cancer advocacy group.
METAvivor is asking people to write to their legislators, asking them to co-sponsor the bills to raise the ante this time that the legislation will pass. So far, it has 101 sponsors in the House, including Republican Brian Fitzpatrick (Pa. -1) in Bucks County. You can bet, I’ll be writing to my congressman, Tom Malinowski, to ask for his support.
In the Senate, it has seven sponsors and none of them are from New Jersey, where I live. You can guess what I’ll be doing as soon as I finish writing this post.
I encourage anyone in the United States reading this to go to http://www.congress.gov and type the bill numbers (H.R. 2178 and S 1374) into the search bar. Click on the bill, then scroll over to the tab that reads “co-sponsor” and click there to find out if your legislator is a co-sponsor. If you don’t have your rep’s contact info, you can go to http://www.house.gov or http://www.senate.gov, type in your zip code and their information will pop up.
METAvivor has made it easy for us by providing this script:
 I write today as a constituent and as an advocate for the metastatic cancer community to ask that your office please cosponsor the bipartisan Metastatic Breast Cancer Access to Care Act (H.R. 2178 f or S 1372). This common sense legislation would fast track disability and healthcare benefits (the current waiting periods are a major challenge for many affected individuals and families). 

If you’re writing to your congressman or woman, add: To cosponsor H.R. 2178, please reach out to Deena Tauster in Cong. Peter King’s office at deena.tauster@mail.house.gov or 5-7896 or Elizabeth Brown in Cong. Kathy Castor’s office at elizabeth.brown@mail.house.gov or 5-3376 

If writing to your senator, add: To cosponsor S. 1374, please reach out to Emily Crow in Sen. Martha McSally’s office at Emily_Crow@mcsally.senate.gov or 4-2235 or Elizabeth Darnell in Sen. Chris Murphy’s office at Elizabeth_Darnall@murphy.senate.gov or 4-4041.

While I’d add that this law should cover anyone diagnosed with metastatic cancer, this is the first step.  Those of us living with this disease thank you for your support.  If you’re waffling at all about taking action, I remind you of this poem written in 1946 by German Lutheran pastor Martin Niemoller:
First they came for the socialists, and I did not speak out—
Because I was not a socialist.

Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

 

Tagged , , ,

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.

 

 

 

Tagged , , ,

Cancer’s Brave New World is Looking for Recruits

I made the call. That was the first step. No one answered, of course.
So I called again today. And now that I’m beyond the fear, I’ll call again tomorrow.
It’s for a local clinical trial. The gist: Doctors will biopsy my tumor and study the cancer cell for its mutations, looking for doors and windows that my immune system can penetrate to kill it. They’ll give me drugs to amp up my immune system so it’s angry and vicious and looking for cancer blood.
At the Cancer Research Institute Immunotherapy Patient Summit I went to last weekend, they said only 3 to 6 percent of people eligible for clinical trials pursue them. In the past, that was no big deal. A Phase 1 trial, the first of three the FDA normally requires before giving a drug approval, might have only needed a dozen or so people to figure out the dosage needed to kill a cancer.
Today, though, they’re looking for teems of people. And instead of targeting just one type of cancer, these drugs are targeting the immune system which goes after any cancer in the body, so virtually anyone with metastatic cancer – meaning it’s spread to other parts of the body – is eligible.
Making the call means pushing past the fear of the unknown. My oncologist has a Chinese food menu of options for me that are tried and true – not to cure it, but that will contain it. When one stops working, we go to column B and choose the next one. But a clinical trial? That’s no man’s land. Unchartered territory. The great unknown.
Brian Brewer of the Cancer Research Institute assures me that the research is there. That these drugs can be so powerfully effective, they’re gaining FDA approval halfway through Phase 2 testing.
But it doesn’t mean they don’t have side effects. Immunotherapy works by supercharging your body’s killer T-cells, while removing cancer’s cloaking mechanism so the T-cells can find it and decimate it. It seems the body already knows how to kill cancer, it’s just that cancer is doing a great job of hiding from it.
A supercharged immune system, though, can at times go after healthy cells. And there can be life-threatening consequences if you don’t stay on top of it. Most of those side effects can be treated with steroids until the body calms down and the immune system finds its rhythm, researchers and patients on these drugs said at the conference. Still, it’s scary.
And even when these drugs work, researchers are learning those capricious cancer cells find new ways to cloak themselves, rendering the meds ineffective.
Researchers aren’t giving up, though. They’re taking blood draws and sucking out those new cancer cells, taking them apart again, seeing how they’ve changed, devising new ways of targeting them and injecting those new, vulnerable, modified cancer cells back into a person’s body so their immune system can find it again and kill it.
It’s all pretty incredible. And the more I learn, the greater my resolve, the lesser my fear, the stronger I become.
At this point, I don’t know who is more at risk: The clinical trial coordinator who seems to be ignoring my calls or the smug cancer cells who mock my T-cell, giggling and chortling as they say “No one’s home,” when my T-cell knocks.
Just wait. That’s all I have to say.