A Middle of the Night Plea

The Senate’s healthcare bill is just one of the reasons I’m awake in the middle of the night, sipping warm milk, trying to believe enough people will do the right thing.

White vintage mug with blue and green flowers
Sipping from this mug, a gift from a friend, reminds me to believe in love.

However it is a big one. I try not to judge people, but it’s hard not to consider certain politicians to be evil. Taking away healthcare is immoral and wrong. I believed that before I got cancer. I still believe it even though certain parties consider me, and those like to me, to be worthless drains on the system.

Please, call your senators, ask them to vote No, then ask your friends to do the same. I know that can be hard. I called while exhausted on Monday. I left a heartfelt plea for Portman because I believe Ohio is better than this and I’m a native Ohioan. I then asked a friend in CO to call her senator. It’s hard to put yourself out there. I know. It’s worth it though, to know you fought with everything you had. There’s more for me to do and I’m gearing up courage to directly ask Republican friends and family to make more calls, and especially to ask them to be open and public about their calls so as to influence their friends who I don’t know.

I’m lucky compared to many. I have ample evidence in my life of good, compassionate people who care about more than party lines. I have friends who have helped me apply for the benefits for which I’ve worked, and eased my guilt at not doing more to contribute to the good in the world. At 32 I planned to be helping the world and saving animals, not begging people to call their senators to fight for what should be basic rights.

I still believe in my deepest heart that I will come through this. I don’t know if I’ll simply be lucky and stay stable or if science will find an unlikely miracle that puts my cancer into remission. When, if, that day comes I know I’ll give back to the world again. I just need a chance to get there.

Were You Serious About Wanting To Help?

People often say “let me know if there’s anything I can do!” Here’s something all of you can do — fight the AHCA.

What is known about it is that it would lead to 23 million Americans losing their health insurance, there would not be federal protections for people with pre-existing conditions, and there would be no federal prohibitions against insurance companies reinstating annual and lifetime benefit limits. Oh, and the super rich would get a huge tax break.

I ran out my super high deductible within less than 30 days of being on my current insurance. How fast do you think I’d hit annual and lifetime benefit limits? How quickly do you think my husband, Jarrod, would become a young, bankrupt widower?

If you live in a state, call your senators and ask them to vote NO on the AHCA. Call them daily. Even if you think that it would be awesome for me to die so that wealthy people can be wealthier, you should at least oppose the secret, closed-door, super rushed process that’s happening. It’s the opposite of democracy to put together a bill in secret, allow no time for negotiations, have zero public hearings, and rush a vote. Even GOP members are starting to say that’s problematic. So you have no gorram excuse not to call.

Second, whether you live in a state or elsewhere, tell all of your friends in states to call their senators and ask them to vote NO on the AHCA.

This is a moral issue. This is a matter of life and death for millions of people, likely many of you! This is not limited to those not on employer plans. This affects everyone in the US. This deeply and personally affects me and my chances of seeing my nephew start kindergarten. Please make those calls and then ask your friends to do the same.

Not sure who to call?

The United States Senate website has a useful feature in the upper left of the screen where you can look up your senators by state, and it’ll provide not only their DC phone number, but also usually their individual websites which should list their state offices. Call as many of your senators’ offices as you can to make sure that they know you oppose the AHCA. Have problems? Comment below and I’ll look up their numbers for you.

Many of you are in Ohio and Portman is a key vote and has been said to be on the fence, so your call is especially important. His numbers to call are:
Cincinnati: 513-684-3265
Cleveland: 216-522-7095
Columbus: 614-469-6774
Toledo: 419-259-3895
DC: 202-224-3353

Ohio’s other senator is Sherrod Brown, whose numbers are:
Cleveland: 216-522-7272
Cincinnati: 513-684-1021
Columbus: 614-469-2083
Lorain: 440-242-4100
DC: 202-224-2315

Many of you also live in Indiana. Your senators are Todd Young and Joe Donnelly. Todd Young’s contact numbers are:
Indianapolis: 317-226-6700
New Albany: 812-542-4820
DC: 202-224-5623

Donnelly’s numbers are:
Evansville: 812-425-5813
Fort Wayne: 260-420-4955
Hammond: 219-852-0089
Indianapolis: 317-226-5555
Jeffersonville: 812-284-2027
South Bend: 574-288-2780
DC: 202-224-4814

Not sure what to say?

Start with your name and that you’re a constituent. Then say that you are opposed to the AHCA and want your senator to vote NO if it comes up for a vote. Mention that your friend/cousin/daughter-in-law/other needs prohibitions against annual and lifetime limits on what insurance companies will pay for care, as well as protections for people with pre-existing conditions. Otherwise, rather than giving back to her community with her husband, she’ll soon leave behind a bankrupt young widower consumed with grief. Or, if you don’t care about that, simply state that you’re opposed to any vote on a bill affecting so many people without time for public comment and multiple public hearings. Say thank you, and that’s usually it.

If you want a more general script, check out 5calls.org.

Want to learn more?

The Skimm put together a fantastic guide that has timelines, key players, and more to help people understand the current state of healthcare in the US, how we got here, and what’s happening in politics about all this. I highly recommend taking some time to read it.

Please call and please ask your friends to do the same. I know that it can be scary to do so, but isn’t the death of someone about whom you care even scarier?

And, because this is such a serious post, here’s a photo of me meeting one of my idols this past weekend with my husband and two of my best friends. Her name is Felicia Day and she’s amazing, and also tweets her opposition to the AHCA. She was also incredibly kind when I teared up talking about my dad and just seems like one of those rare people with a ton of talent, but also a ton of goodness.

4 people including me standing with Felicia Day in the middle

*Note, this blog post is similar to some of my FB posts over the past few weeks. This issue is deathly important to me so I wanted to combine some of the information and share here with additional details in hopes of convincing as many people as possible to call and fight the AHCA.

Almost There, Sort of

Tomorrow, Wednesday, November 23 is my last radiation session!

I went back and forth over what punctuation to use, an exclamation mark or a period. See, it’s the end of radiation for now, but we won’t know for about six months if it actually worked. If it didn’t, well, I’m not sure what comes next.

Also, the end of radiation isn’t the end of cancer treatment. It’s awesome that it’s the end of driving to and from Baltimore every weekday. It’s awesome that my side effects shouldn’t get significantly worse after tomorrow. But, it’s not the end.

I still have a follow up with my main oncologist in mid December. She may or may not request a CT scan at that point in time to see if there is any immediate effect. She will likely have me start my immunotherapy drugs at that point. When those were first described to me, it was one of those science fiction, “we live in the future” sort of moments. Essentially the chemicals in the immunotherapy drugs target certain receptors on the type of cancer cells I have. Once the chemicals have targeted those receptors, they bond to them and essentially make it impossible for the cancer cells to reproduce. So, it’s sort of like dropping an infertility bomb so that any cancer cells in my body are unable to reproduce and form tumors that would kill me.

Of course, they’re still kind of new and cancer treatment is never a 100% sure thing. And they have side effects. There’s a good chance they’ll cause serious pain in my small joints. You know, like the small joints I’m using in my fingers to type this post and do my work.

There’s a plan for that though! See, there are three versions of this drug. We’ll call them Alpha, Beta, and Gamma. A lot of people have the joint pain as a reaction to one of the drugs, but there’s no way to predict which drug will cause the side effect for which patients. The plan is that I’ll start on Alpha (or whichever one is currently cheapest and therefore preferred by my insurance company). I’ll take Alpha for two weeks. Hopefully Alpha won’t cause side effects and I’ll stay on Alpha for six months. However, if Alpha causes “unbearable” side effects that I “cannot tolerate” for two weeks, then I’ll switch to Beta. If Beta causes unbearable problems, I’ll try Gamma. I was assured back in the summer that most patients are compatible (meaning no unbearable side effects) with at least one of the three drugs. So, worst case scenario, I’ll have a month of excruciating small joint pain that will make it nearly impossible for me to type.

However, there’s even more fun! Our for profit health insurance system which I’m sure is celebrating the hell out of the electoral college results, means that a lot of insurance companies will try to fight a patient moving from Alpha to Beta or Gamma because the immediate cost to the insurance company matters more than patients’ quality of life and ability to contribute to society. My oncologist warned me about this. Thankfully, my oncologist and the rest of the Johns Hopkins staff have been completely kickass with my insurance company in the past. So, while it might mean a delay in treatment, I’m confident that my team will prevail in any fight against my insurance company. You do not mess with my oncologist.

In six months, I’ll get a CT scan and have a follow up with my radiation oncologist. That’s because radiation works slowly. There’s a good chance that if they did a CT scan a week from now, it wouldn’t show any change from before I started radiation. That’s…unsettling to put it mildly. With chemo I waited less than a month before my first clean scan.

Of course, one clean scan doesn’t really mean anything. I mean I had a clean one-month scan. Then at six months I had a tumor that turned out to be the size of a clementine. Oh my darling, oh my darling, oh my darling clemtumor.

clementine

Sorry about that, got distracted for a minute.

There’s also that. While I’ve been focused on making it to the end of radiation I haven’t been focused on the holidays and what they’ll be like without my dad. Kind of shitty, as my sister said, and not much we can do about that. But even starting to think about the holidays is like poking a barely stable dam holding back a flood of pain.

So, I finish radiation tomorrow. Then I get to start slowly recovering. Apparently I might not get back to normal energy for six months, I wanted to scream when I was told that. I also barely held it together when, after I asked about reintroducing dairy products to my diet, I was told “well, those aren’t very good for you.” I think my voice was almost steady when, instead of cursing, I said “You don’t understand, queso dip and milkshakes are my comfort food. They’re how I cope with life.” I closed my mouth and didn’t include “which is full of pain and struggle because I’m in the darkest timeline and my dad isn’t here to help me understand or fix things” after “life.” I did think it pretty hard though. The nurse then suggested adding them back slowly.

When I finish radiation, I start recovery and I start having less of a reason to not think about the holidays. Hence not knowing if I should use a period or an exclamation mark on my opening sentence.

Why did I choose the exclamation mark? Because it is something to celebrate. And even in the darkest timeline, it’s important to celebrate the good and joyful events, whether big or small. I won’t know if the radiation worked for six more months. I won’t be immediately back to normal. But that’s the future. I can’t control the future. What I can do is celebrate in the moments and work hard when needed. I can find a way to balance fighting bigotry and finding moments of joy.

Speaking of fighting bigotry (which we all should agree on, btw). Have you called your senators and reps to ask them to denounce Stephen Bannon and Jeff Sessions because bigots and racists should not be in the administration? No matter who you voted for, if you consider yourself my friend I expect that you consider yourself opposed to racism and therefore it is your duty to speak out against bigots and take action. Those links above will help you find the phone numbers. If you need a script, here’s one my friend Annie used:
“Hi, my name is [name] and I’m a constituent in [city]. I’m calling to ask the Representative/Senator to oppose the appointment of Stephen Bannon to Chief Strategist, due to his ties to white supremacist groups. Our country deserves better than to fill our White House staff with people who espouse hate. [I’d also like to ask the Senator to push hard to get President Obama’s Supreme Court nominee confirmed before the new administration takes over.] Will you please pass that along?”

It’s short, simple, and something that we all should agree on regardless of our party affiliations. Look, if the exhausted cancer girl who gets anxious on phone calls can find the spoons to stand up for people, so can you. I’ll also be making calls about the ACA and more since, I kind of like living. I also like my best friend living. I like a lot of people living and being able to access medical care. Living — it’s not just for the rich!