Time is compressing. I started my last post with “what a difference a year makes.” Today, I say, what a difference a week makes. I was grousing about Congressional gridlock which had shutdown the federal government. Then last Tuesday, Congress found a way to mend fences, which means we may actually be able to move on to solving problems.
Of course, I may be speaking too soon. The fix is only temporary. And while Congress seems determined to keep in tact funding for the National Institutes of Health that it promised at the end of 2016 with the 21 Century Cures Act, nothing should be assumed. Hence, here are a few bills worth keeping an eye on or even picking up the phone and asking your representative for support in moving forward. Last week, for example, I asked my congressman Rep. Leonard Lance to co-sponsor a House version of the American Cures Act to secure research funding through 2020. It took less than 5 minutes to pop him an email.
I’ve included links to each bills sponsor’s email, as well as the committee chairs, to make it easy for you to reach out, nudge along or outright ask what the holdup is. If this past year has taught us anything, speaking out leads to action. And every action is a step towards a cure.
The bill would amend the Balanced Budget and Emergency Deficit Control Act of 1985 to allow larger increases in appropriations for the National Institutes of Health, Center for Disease Control, the Department of Defence health program, and the VA medical and prosthetics research program by making cap adjustments to discretionary spending limits through fiscal year 2021.
Introduced by Sen. Richard Durbin (D-IL) last March, it now languishes in the Senate Budget Committee, headed by Sen. Mike Enzi.
The bill would require group and individual health insurance coverage and group health plans to provide the same coverage of oral anticancer drugs (meaning pills ) that they do for IV drugs such as chemotherapy. It would prohibit health insurers from changing, replacing, reclassifying, or applying more restrictive limitations on oral anticancer medications than those imposed on intravenously administered anticancer medications.
Introduced by Rep. Leonard Lance (R-NJ) last March, it languishes in the House Energy and Commerce Committee, headed by Rep. Greg Walden. (As you can imagine, I’ve already pushed Rep. Lance on this).
The bill would require the Health and Human Services Secretary to establish a national Oncology Medical Home Demonstration Project under the Medicare program to improve quality of care and cost efficiency by changing the Medicare payment process to include a care coordination management fee and performance incentive payments to participating oncology practices. It would require developing performance standards for participating oncology practices based on specific measures including patient care, resource utilization, survivorship, end-of-life care, and patient experience.
Introduced by Sen. John Cornyn (R-TX) it’s languishing in the Senate Finance Committee, chaired by Sen. Orin Hatch.
The bill aimes to expand patient access to experimental treatments in clinical trials by enhancing the clinical trials process and providing updated guidance on eligibility criteria.
Introduced by Sens. Orrin Hatch (R-UT), Michael Bennet (D-CO), Richard Burr (R-NC), and Bob Casey (D-PA) last May, it languishes in the Senate Committee on Health, Education, Labor, and Pensions which is chaired by Sen. Lamar Alexander.
The bill would require the NIH to expand, intensify, and coordinate programs for triple-negative breast cancer research through centers such as the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Environmental Health Sciences, the Office of Research on Women’s Health, and the Nation. It also directs the CDC to develop and disseminate triple-negative breast cancer information to the public and HRSA to develop and disseminate triple-negative breast cancer information to health care providers.
Introduced by Rep. Sheila Jackson Lee (D-TX) last April, it languishes in the Energy and Commerce Committee, chaired by Rep. Greg Walden.
The bill would amend title XVIII of the Social Security Act to provide for Medicare coverage of certain lymphedema compression treatment items as durable medical equipment.
Introduced by Rep. David Reichert (R-WA) last February, it languishes in the House Committees on Energy and Commerce; and Way and Means. A senate version was introduced by Sen. Maria Cantwell (D-WA) last May and languishes in the Senate Finance Committee.
The bill amends the Mammography Quality Standards Act (MSQA) of 1992 to require mammography results include information about a patient’s breast density and shared with patients and their physicians.
For women with results indicating they have dense breast tissue, the summary must also include language encouraging them to consult with their physician regarding whether additional screening would be beneficial.
Introduced by Rep. Rosa DeLauro (D-CT) in October, it’s languishing in the House Committee on Energy and Commerce, Ways and Means. A Senate version was introduced by Sen. Dianne Feinstein (D-CA) in October and now languishes in the Committee on Health, Education, Labor, and Pensions. The two have sponsored this legislation a least four times, to no avail.
The bill would require health plans to provide coverage for a minimum hospital stay for mastectomies, lumpectomies, and lymph node dissection for the treatment of breast cancer, as well as coverage for secondary consultations.
Introduced by Rep. Rosa DeLauro last July, it languishes in the House Energy and Commerce, Ways and Means, and Education and the Workforce Committees, the latter of which is chaired by Rep. Virginia Foxx
The bill would amend the Higher Education Act of 1965 to allow for deferment of certain federal student loans while a borrower is receiving cancer treatment as well as the six months following treatment.
Introduced by Rep. Ileana Ros-Lehtinen (R-FL) in June, it languishes in the House Committee on Education and the Workforce.
The bill would require the Director of NIH to conduct or support research to determine the extent to which the presence of dioxins, synthetic fibers, chlorine, and other components in tampons and other feminine hygiene products pose any risks to the health of women who use the products or the health of their children.
Introduced by Rep. Carolyn Maloney (D-NY) last May, it languishes in the House Energy and Commerce Committee.
What a difference a year makes.
At the end of 2016, then President Obama signed off on the 21st Century Cures Act, a bipartisan effort that appropriated $4.8 billion for cancer research and more than $1 billion to address the opiod addiction problem in the U.S.
To give you an idea of what bipartisanship looks like – it passed the House 392-26 and the Senate by a vote of 94-5.
It provided spending increases for the National Institutes for Health through 2020, and as part of that, increases for the National Cancer Institute.
Today, a year and a month later, Congress can barely agree on when they’ll meet again to vote on even a temporary spending package to keep the government open.
Even worse, President Trump’s 2018 budget calls for a 25% cut in spending to the National Institutes of Health, and more than $1 billion being cut from the National Cancer Institute.
A Senate bill proposed by Sen. Dick Durbin that would allow larger spending increases for the NIH, Center for Disease Control, the Department of Defense’s health program, and the Veterans Administration medical and prosthetics through 2021 is stuck in Senate Budget Committee hearings.
Already, the Washington Post is declaring 2018 as another year of inaction and gridlock.
Meanwhile, more than 14 million people currently living with cancer – according to the CDC – wait on the sidelines, as promising research is halted by lack of funding.
For us, gridlock isn’t a matter of frustration, it’s a life or death issue.
Yes, progress is being made each day in the war on this disease. Today, for example, Swedish researchers announced they’ve found a way to stop a protein that helps breast cancer cells get the energy they need to proliferate. Sweden gets it.
According to the NCI, there are more than a dozen bills that address cancer issues sitting in committees. None of them are making headlines. People aren’t sitting outside of representatives offices demanding that funding be restored. Maybe a handful of us are emailing or calling our elected officials asking that more be done, our voices being drowned out by partisan bickering that’s erupted in the past year.
I don’t know how to bring civility back to politics. But I don’t intend to wait on the sidelines while each side hurls meaningless rhetoric at each other. Nor should you.
I’ll be spending the day, calling and emailing my representatives, letting them know it’s time to get research moving again. It’s time to find a cure. Because the answer is just sitting there, waiting for us. And I’m dying to find it.
Click here to find bills that are stuck in committee
Click here to ask your representative to do something to move a bill forward.
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.