Friday, February 3, 2017

The End of the World As We Know It

I have quite clearly been at a loss for words these past few weeks. Well, I've had words, but most of them aren't fit to print. "WTF?!" doesn't exactly make for constructive dialogue.

As I transition out of my role of full-time cancer patient and into whatever comes next: survivor, I suppose, though that is still such a strange word for me; advocate, about which I hope to write more soon; and adjunct law professor teaching international law twice a week (yes, really), I'm still trying to find my footing in a post-MBC world, and now, also, in a post-factual one, too.

And while this is a breast cancer blog that's sometimes about parenting or research or even finances or sexuality or grief, I cannot ignore my past as a lawyer/lobbyist and the dire threat to healthcare -- and our constitution itself -- that now exists. So this may also become a blog about policy and politics, too, to some extent. Just a fair warning for my readers because I'm sure that not all of you share my voting record or worldview. I hope you'll stick around regardless. At the end of the day, we're all in this together. I welcome debate here (or in person!); just please keep it civil.

For those of us who are friends on Facebook or other social media, you might have seen my statement shortly after the election that Trump's win felt oddly similar to being diagnosed with cancer. The cold fear was familiar to me, as was the sense that I had just lost control and my innocence in one fell swoop.


Here's the deal: I am not a "snowflake," as some people are characterizing those of us expressing our sadness at what our country is facing: the potential loss of the rule of law and human rights, or respect for free speech and science. Our grief is warranted. I am no withering petal.

No one gets through nearly 5 years of cancer treatment without some deep resolve and fortitude.

My opposition to the new administration is not a partisan matter. I am a patriot. I studied history and the law, marveling at our founding fathers and the lasting power of our Constitution. I grew up in a military household where the Fourth of July was almost as important as Christmas. I can't really carry a tune (ask Chris), but I hummed along to Lee Greenwood's anthem with tears of pride in my eyes every summer.

This American "experiment" we've been involved in for the past 240 years? I want to see it endure. I believe in it, flaws and all.

One of my students asked me the other day whether I thought the new administration's actions were hurting our standing in the world, and if so, what we could do to correct this course. My answer was strangely similar to what I'd tell a newly diagnosed cancer patient, and at least one (conservative) author seems to agree with me.

I told her we need to continue to speak up for our beliefs and interests. I would tell a cancer patient she has to be her own best advocate. The protests and boycotts and what one friend tells me are hundreds of thousands of calls per hour to congressional phone lines are making a difference. We are being heard. It is an uphill climb, but I'd argue our lives and liberty are worth it.

Elliot Cohen writes:

[A]ll can dedicate themselves to restoring the qualities upon which this republic, like all republics depends: on reverence for the truth; on a sober patriotism grounded in duty, moderation, respect for law, commitment to tradition, knowledge of our history, and open-mindedness.

On the other end of the spectrum, all of this advocacy, just like being a patient, can be exhausting. It is SO important to engage in self-care. Get enough sleep, even if it means resorting to a tablet of Benadryl (note, I am NOT a doctor, and this is not meant to be medical advice). Exercise regularly. My guess is boxing classes will be filling up quickly as more and more of us feel the need to punch something. Eat plenty of vegetables, even when you feel nauseated. It is important to refuel yourself to get back into the arena, for this will be a long, drawn-out match.

We don't want to burn ourselves out. We have so much work to do. We have been knocked down (and I don't mean liberals, I mean our very democracy). We must stand up again and again and again, like the old Japanese proverb says. Ask any cancer patient.

Saturday, December 31, 2016

So Long, 2016

A lot of people in my circles can't wait to see the end of 2016. And it's not just my circles, is it? By so many accounts, 2016 was a dumpster fire of a year:

So ingrained had 2016-cum-terrible-horrible-no-good-very-bad-year become in our broader consciousness that it came to stand in for something larger than itself: 2016-ness. On Election Day, British writer Owen Jones captioned a GIF of a mushroom cloud: “Just how 2016 is 2016 prepared to be?” He added later, when the early results were favoring Trump: “2016 currently thinks there is ample 2016 to go. 2016 is currently saying ‘heyyyyy! Look how 2016 I can possibly be!’ ”

Other people are all over Twitter talking about celebrity deaths, which were exceptional in 2016, I'll give you that. George Michael, Carrie Fisher, Prince, David Bowie. Us children of the '80s grieved the stars of our childhoods. But every year, women I know and love are dying, too.

This year started out for me as so many Januaries have since my diagnosis, with the death of my friend and advocate extraordinaire, Holley. At the time, my nurse told me that deaths tend to spike in January, patients having held on through the holidays. Without giving it much reflection, I can immediately think of five other good friends of mine who died of metastatic breast cancer in 2016: Colleen, Amanda, Michelle, Lesley, Jody... And the mushroom-cloud GIF embodiment of 2016 doesn't seem that far-fetched.

Holley & me at the opening of A Story Half Told in NYC, in October, 2015, 3 months before she passed away

On the other hand, a hand I envision rising out of the ashes of the bomb that was this year, I can't close out 2016 without reflecting on what a miraculous one it was for our family. 2016 will always be the year I was told I don't have metastatic cancer. 2016 was the year I got to celebrate my 20-year high-school reunion and had my port removed after almost five years of chemo infusions. This year I got to see Quinn start kindergarten, learn to ride a bike without training wheels, and lose his first tooth. 

And this was the first holiday season of Quinn's life that I haven't constantly wondered if it would be my last. 

***

For the past several years, we've participated in a winter solstice ritual introduced to us by our friend Kaye. Some years, she hosts a gourmet, multi-course meal at her home, and over after-dinner drinks we write our wishes for the coming year on scraps of paper. We don't share our wishes with each other, though I suspect everyone in the room always knows what my wish for the coming year is. Some years, I was bald. (Hint: I never wished for hair.) Kaye would say some words about the significance of the solstice and the coming of the light, and we would all light our wishes on fire, unspoken, rising to the heavens to be doled out from there.

I've had some setbacks over the years since my diagnosis, but my wish always seemed to hold. I imagine it is the same wish of most people with a diagnosis of metastatic cancer. This year, we didn't get together with Kaye, but we had friends visiting from DC and shared our new tradition with them. We lit our wishes on fire on our back porch, laughing that some didn't seem to launch far from our patio table. Of course, I hope they still come true, whether they made it to the heavens or not.

The winter solstice was my in-law's wedding anniversary. My father-in-law died of metastatic pancreatic cancer in the fall of 2009, just shy of what would have been their 35th anniversary. Six years later, my mother-in-law died of complications from Parkinson's disease. Sometimes, when we light our wishes on the winter solstice, I wonder if my in-laws aren't still looking out for us, granting us another chance to wiggle a loose tooth or play Santa for our boy.

***

On December 23rd, I paused to remember that same date in 2011 when I was told for the first time that the chemo had worked and there was no evidence of disease. Earlier this month, I was officially re-staged. After a clean scan mid-month, my oncologist told me I'd probably been stage 2B. My sister-in-law commented that I was probably the only person ever to be happy about a stage 2 cancer diagnosis.

2016 was the year I got to wipe the slate clean and say I've probably been in remission since December 2011 -- 5 years now. While that number doesn't hold much meaning for me in terms of magical cancer milestones (I've seen far too many people recur after reaching five years "cancer-free"), I am in awe that I'm still here. I pinch myself nearly daily at the twist my life has taken this year, at the new chances I've been given. 

It was just the three of us -- Chris, Quinn, and me -- this Christmas, we spent it in our pajamas until dinner, playing with new toys and eating Santa's leftover cookies. It was a pretty perfect celebration of life and re-birth, even if we're not churchgoers.

Tonight, we'll ring in the new year and say good-bye to 2016 with some friends and champagne. I'll make a toast to what a crazy, mixed-up, sweet, miraculous, dumpster fire of a year it was. I'll hope for many more miracles in 2017. Cheers, my friends. I love you guys.

Photo by the exceptional Lara Agnew


Monday, November 21, 2016

Cancer Advocacy Update

My friend Beth has been denied the chemotherapy drugs her doctor is recommending she get to treat her metastatic breast cancer. Her insurance company, +Blue Cross and Blue Shield Service Benefit Plan doesn't think she should have them. They did a cost-benefit analysis, apparently, and decided Beth's life wasn't worth it. I think that about sums it up.

I am angry, and you should be too.

***
Supermoon over DC
Photo by Stan Mouser

I flew to DC last week and spent all day Thursday at a policy roundtable to discuss the future of cancer policy post-election. What happens to the Patient Protection and Affordable Care Act (ACA/Obamacare)? Will Vice President Biden's Cancer Moonshot still get funded? Is Paul Ryan going to be successful in privatizing Medicare? Will the Medicaid expansion go away?

Mostly, I listened, because there were some serious wonks on those panels, women and men who've spent their entire careers focused on healthcare policy and how to improve the system. I also asked a few questions. 

Deep into a discussion on "high-risk pools" and the need to draw in "young immortals" to decrease overall insurance costs, I raised my hand. 

"Hi. I was one of those 'young immortals' until I was diagnosed with metastatic breast cancer at age 32. Metastatic cancer in young people is on the rise, but people are also living longer with cancer. Cancer is expensive. What about lifetime and annual limits, which are currently prohibited under the Affordable Care Act?"

To which the response was, essentially, "Your life matters. I'm sorry for your experience. But trade-offs will have to be made."

Trade-offs. This is what we're up against, folks.

***

Here is what I learned, although nearly every speaker admitted we are all trying to read tea leaves at this point. No one really knows what a Trump administration is going to look like, but we do know that the Republican Congress of the last several years has voted to repeal the ACA more than 60 times

One panelist likened it to a dog who finally caught the car. The question is what does the dog do now? 

  1. Repeal and replace was just a campaign slogan. The general consensus was there is not currently any republican agreement on what to replace the ACA with. So there will be efforts to repeal, possibly with a phasing in of something else down the road. There are legislative tricks up those republican sleeves, including a way to repeal without the requisite sixty-vote majority typically needed in the Senate. Get poised to hear budget reconciliation a lot. And if you don't currently have insurance coverage and think you might want it, APPLY FOR COVERAGE NOW. Keep current on your payments. Those with existing coverage may be grandfathered in to new legislation, if and when new legislation is introduced.
  2. Medicare (and Medicaid) as we know it is at risk. Speaker of the House Paul Ryan has repeatedly made it clear he wants to overhaul Medicare (likely to privatize it, similar to what happened with our prison system. That didn't work out so well.) Another panelist said she'd be shocked if this happens in the same year as a repeal of Obamacare, but it's still at risk. While many panelists cautioned that republicans gut Medicare -- and potentially alienate the AARP crowd -- at their peril, Paul Ryan and company seem determined to move on this one. And if the ACA is repealed, so goes the Medicaid expansion. 
  3. Cancer Moonshot funding is a concern. Congressional appropriations for fiscal year 2017 are at a stand-still because of the election (with another continuing resolution expected before December 9th), and didn't include specific funding for the moonshot anyway. At least one advocacy organization is urging its followers to reach out to Congress and demand a vote on NIH funding this year, rather than flatline the funding at 2016 levels. Another opportunity for funding the moonshot is the 21st Century Cures Act, which increases funds in exchange for decreasing regulations at the FDA. But prospects for that legislation during this lame-duck session are murky. I feel like I'm giving you answers straight out of a Magic 8 Ball: reply hazy try again. 
  4. Speaking of the Moonshot, MATCH Trials have begun. These clinical trials aim to analyze patients' tumors for genetic abnormalities for which we already have targeted therapies. We might have data from these trials in as soon as one year. The current acting director of the National Cancer Institutes is planning on staying on in this administration as long as possible. Typically, it takes new presidents about a year to replace these appointees.
  5. Advocacy is more important than ever. Every speaker mentioned it. We need to tell our stories and show that we are more than just a cost in the cost-benefit analyses that Congress and insurance companies are doing. We need to talk about why the Affordable Care Act is important (protections against prohibiting coverage for pre-existing conditions and bans on annual and lifetime coverage limits are my two gems). Is the ACA important to you? TELL YOUR STORY HERE. And write, email, or tweet Congress to tell them your concerns. 
***

After a full day of policy information that was admittedly bleak, I went with a representative from MetaVivor to meet a friend on Capitol Hill. We talked about how her office can help us in the cancer community. We have allies on the Hill who understand how expensive treatment is, who know women (and men) are dying by the hundreds every day, and who want to keep the protections that have been in place for several years now. They (and I) also understand the current system isn't perfect, but we don't believe the answer is cutting off protections and coverage for millions of people. 

People like my friend Beth cannot afford gaps in insurance, let alone insurance that isn't working for them and denying treatments. Another friend told me she would stop treatment rather than bankrupt her family, if she lost her access to Medicare. My friends are having to think about making the choice to die or pay their bills.

We have work to do.

Monday, November 14, 2016

What Can We Do Now?

Well, that didn't go as I had hoped. I am still troubled by Republican plans to gut the Affordable Care Act, phase out Medicare, and -- in all likelihood -- reduce spending on cancer research. But those are not my only concerns, not by a long shot.

Maybe I should give you some background on me. 

I think I mentioned way back at the beginning of this blog that I grew up an Army brat. I can't find the reference, but trust me on this. It happened. My family moved, on average, every two years. 

I went to three different high schools, two of which were majority minority. Having lived on military bases -- which were very racially diverse, maybe still are -- until late in middle school, I didn't think much of it. I took that diversity for granted.

Here's a page from my yearbook in 1995, the second high school I attended. Don't ask me what I was thinking with that hair. But you see the faces of my classmates? This is the bubble I grew up in. We also had the benefit of not much socioeconomic adversity, since most of our parents were in the military. 

Growing up, I took acceptance of our differences for granted. For years, I naively assumed that racism was pretty much gone in this country because I didn't see much of it in my early life. I lived in Korea and Alabama twice and Florida -- and because us kids were mostly getting along (except for that tiff between the Puerto Rican students and Mexican students at my high school in Orlando that one time), I wrongly assumed adults were mostly okay with each other, too.

Even as I witnessed with horror the killing of Trayvon Martin, Terence Crutcher, and SO MANY others, it didn't dawn on me that racism was still prevalent enough in this country to elect Donald Trump. I still held out hope that we would collectively stand up against an openly racist and inflammatory candidate. 

I'm not sure that military diversity bubble was the most productive for my worldview, since it meant that I was surprised and gutted by this year's election. I am heartened only by the fact that more of the electorate voted for kindness and inclusion, but that doesn't change the outcome.

I was blind, but now I see. 

I still don't understand or begin to make excuses for the 53% of white women who voted for Trump. If you are one of them, can you please explain your decision to me in a way that doesn't belittle Hillary? I can wholly understand how reasonable people could not like Hillary's policies, but to choose a man who would "grab 'em by the pu**y" to represent women's interests? Our daughters'? Did you hate Hillary that much? Can you not see past the end of your noses? Are you -- my neighbors -- really supremacists? I'm trying to understand, and I just don't.

So what now? What can we do to keep hope alive in this country? SNL this week helped. If you're one of the few people who haven't seen it yet, Kate McKinnon's rendition of Leonard Cohen's iconic song is beautiful: 



"I'm not giving up, and neither should you."

And A Tribe Called Quest has always been one of my favorites.



In that vein, I'd like to point you to a few women- and minority-run businesses that are doing good things, mostly in the breast cancer space, but not exclusively. (Note: I don't know how all of these people voted, but their work is impressive enough for me to put it here.)

1. The Brobe by Allison Schickel: I wished I'd had one of these when I had my bilateral mastectomy nearly five years ago. The material is incredible, it has a built-in bra and internal pockets for drains. I do have one to give away. If you're interested, please leave a comment and I'll send it your way. It's black, size large, and comes with some jewelry from...

2. Kendra Scott, who donated $100,000 to...

3. MetaVivor.org, which is committed to funding metastatic cancer research.

4. HealinComfort by Cherie Mathews: similar to the Brobe, above, but meant to be worn out of the house, too. I think I used safety pins to keep my drainage bags hooked to the inside of my zip-up sweatshirt. But I had Chris to help me with fastenings, and this shirt would have been so much easier.

5. Tigerlily Foundation: helping young and underserved women get through cancer.

6. Shay Sharpe's Pink Wishes: granting wishes to terminal breast cancer patients.

7. PAL Experiences: opening up new worlds for children living with autism.

8. Kerry Burki: a catalyst for positive change in our world.

9. Lara Agnew: my talented friend who reveals the beauty in our world.

10. Farmyard: local CSA serving Phoenix

11. AnaOno Intimates: beautiful lingerie by and for breast cancer survivors.

12. HulaBelle Swimwear: bathing suits for women who've had breast cancer.

13. Cat & Owl Co.: fun games to play with your young children that also teach them math concepts. Quinn LOVES these games.

14. Brim Papery: cards, mugs, and paper products that make great gifts.

15. Emily McDowell Studio: best known in my circles for the "Please let me be the first to punch the next person who tells you everything happens for a reason" card.

Also, here is a list of organizations that need our help right now.

This week, my family and I have also donated to Planned Parenthood, contributed to the ACLU, and I'm going to find ways to give back to my community, here in still red Arizona, that don't simply involve writing a check or canvassing in neighborhoods that apparently turned out to vote for Hillary in much larger numbers than my own. What will you do?

Monday, November 7, 2016

Get Out And Vote

I wasn't sure I was going to write about this election on my breast cancer blog. I mean, what does politics have to do with cancer or healthcare? Quite a bit, actually.
My dear friend Beth is currently in a fight for her life because her insurance company, a federally-run group, has denied the combination therapy that her DOCTOR recommends she have to treat her metastatic breast cancer. You see, the drugs are not FDA-approved for use in this way, even though trials have shown 93% efficacy in the treated population. Beth has taken her fight to social media, and as a community, we are stepping up in the hopes that +Blue Cross and Blue Shield Service Benefit Plan will hear our voices and #SaveBeth.

It's gross, really, that an insurance company can say no to life-saving drugs.

Here's how it's supposed to work: 1) Patient pays for insurance 2) Patient gets sick 3) Insurance pays for treatment. THAT'S WHY WE HAVE INSURANCE. It's why we PAY for it.

Insurance denials by federal insurers are a policy issue. FDA approvals are a policy issue. Cancer research and how much money gets funneled into research on metastases (not nearly enough, only about 7%) is a policy issue. Policy gets set, for the most part, in Washington, DC. And for cancer patients and survivors, those issues are vitally important.

It is literally about life and death.

I cried tears of relief last year when the Supreme Court ruled in favor of the Affordable Care Act's protections on coverage for those with a pre-existing condition. I didn't know then what I know now about my health: namely, that I was likely never metastatic. But I still will always have had cancer. It is part of my story now, and prior to this monumental ruling, insurance carriers could flat out refuse to cover me.

I have my insurance through Chris. It has been wonderful insurance, covering most of our costs over the past five-and-a-half years, which have included a c-section, a bilateral mastectomy, nearly EIGHTY infusions of chemo or targeted chemotherapy, several biopsies, five weeks of radiation, more scans than I can count, and reconstruction. I have no idea how much all of that has cost, but my guess is Chris and I couldn't afford it out-of-pocket. 


The thing is, our insurance is tied to his job. I think his job is secure, but surprises happen in life. [UNDERSTATEMENT OF FOREVER] If something happened to Chris, would I be eligible for insurance coverage? The Supreme Court says yes. But Republicans have vowed to overturn the law that protects this coverage. I'm not okay with that uncertainty.

Republicans have also promised to defund Planned Parenthood, which provides free cancer screenings for underserved populations. DEFUNDING THAT CARE IS NOT OKAY. Women of color are already at such a disadvantage when it comes to healthcare. Struggling populations don't need one more hurdle standing in the way of their survival.

A republican congress has also drastically cut spending on science over the last decade, and would likely continue to do so. Science is how we get research. It's how we move toward therapies that keep patients like my friend Beth alive long-term. So she can watch her young kids grow up. So she can continue to advocate for other patients living with this dreadful disease. So we can end cancer as we know it.

But this election isn't just about me. It isn't just about cancer. And it isn't just about democrats versus republicans and who promises what.

It's also about the most qualified candidate in my lifetime to run for office, going up against an unprepared clown who seems to think our constitution is a joke and derides nearly every group of people imaginable: women, disabled people, Hispanics, Muslims, Jews, blacks, even those in his own political party. I honestly don't understand the appeal.



This election is about the tone we will set for our country for at least the next four years, but possibly a generation or more. Our kids are paying attention. Quinn tells me I should be president, but short of that, he doesn't understand why a mean person, a bully, would even have a chance. Quinn is in kindergarten and understands that's not how we get ahead in this country. Those are not the morals we defend. We are better than that.

As one of my favorite bloggers put it:

I'm begging you:  please go vote, and please vote with best intention.  I suspect that I don't have to convince you that this man is a demagogue -- I can't imagine you'd be visiting Chookooloonks if you agreed with his stance.  However, if you're eligible to vote in the United States, I beg of you to do so.  Vote early, if you can; if you can't, then on Tuesday, November 8th, please find your way to the polls, despite the weather, despite the lines, despite how busy you might be.  And as you vote, please be mindful:  please don't throw away your vote, and please don't vote for this person simply because you're loyal to his party.   He's a dangerous, unkind, mean man, and he doesn't deserve your vote just because he conveniently chose a major political party to hang his platform on.

There are so many important issues facing our country. Healthcare, the future of our treatment of cancer, and the first amendment are just a few important ones to me. I'll probably lose a few readers because of this post, but it's important. I can't keep silent on it, not this year, not this election. 

Please remember to vote tomorrow. Our lives depend on it.