Denial, Part 3: VICTORY!

When last I spoke to you all, my insurance had denied me approval for my combination therapy. Let me take in the way-back machine before I bring you up to date.

Back in June, I attend the American Society of Clinical Oncology Annual Meeting, aka ASCO. While there, I went to the Novartis booth to ask a question about Affinitor, which I was taking at the time. But nobody at the booth could answer my question, because I wasn’t a doctor. This has to do with FDA rules about pharma providing information to patients that might be medical advice, but it was still pretty frustrating that they hadn’t sent anyone who COULD speak to patient advocates. So, I tweeted about it, with a picture of me in front of their booth.

Novartis immediately responded to my tweet asking me to email them so they could talk to me about it. And their director of patient advocacy called me, and apologized that they hadn’t had anyone there who could speak to me about their drug. She said they’d never had a patient advocate come up their booth at ASCO before, so they hadn’t thought to have someone there could answer patient questions. And she assured me that they were rethinking this now that more patient advocates are coming to medical conferences. It was nice that my tweet resulted in such an immediate response.

Fast forward to my struggle to get my drugs…the fabulous patient advocate at Avera, who deserves a Nobel prize of some sort, helped me file for patient assistance through Genentech, maker of Avastin, and Novartis, maker of Mekinist. She filed the paperwork on a Friday, and on Monday I got a call from Genentech. They spoke to me for about 2 minutes confirming basic information about me, and then said “You’re approved. We’ll send the drug to your oncologist’s office.” I was elated to say the least! 

Then came Tuesday evening. I got a text from #bestdocever saying Novartis had turned me down for patient assistance, because we were above their income cap. This is exactly what I had feared would happen. I started tweeting about it and googling similar drugs to see if maybe there was a different drug we could try to get access to. The Hubs and I started talking about getting legally divorced so I’d fall under the income cap. I slept poorly that night.

Wednesday morning I woke up ready to fight, and I began tweeting again and mentioned that I was filing an appeal of Novartis’s denial decision, as did several of my friends and followers. Two hours later, I got a call from that nice director of patient advocacy who had reached out to me in June. She said she saw I was appeal and she was so glad that I was, and that a whole team of people was going to work on my appeal to expedite it, and she wanted me to know that they were going to work hard on it. I reiterated my frustration that if I divorced my husband, I’d qualify under their income caps, and she said that they certainly don’t want to put anyone through that. I thanked them for expediting my appeal and for reaching out. 

But I kept up the tweeting, because clearly it was having an effect. I mentioned that Novartis made $17 BILLION in profits last year. I explained that their drug is $6,000 a month, which is three times our mortgage. I talked about not wanting to divorce the husband I love. I said I wasn’t ready to die.

At 2:30, we sent in my appeal paperwork. And at 3:30, I got the call from Novartis that my appeal had been granted and I was approved to receive Mekinist. I declared victory on Twitter and thanked Novartis for granting me my drugs. It was a fantastic way to start the Thanksgiving weekend.

What have I learned from all this? Well, insurance companies don’t seem to give a shit about horrible things people say about them on social media. They completely ignored everything we tweeted or posted on their Facebook page. But pharma companies DO seem to care about negative publicity. And pointing out the profits they make and the cost of their drugs, and the crazy things that patients have to go through to qualify for support, seems to motivate them to do the right thing.

I plan to use what I’ve learned to help as many patients as I can get access to the drugs they need to keep them alive. If you or someone you know is having trouble getting access to drugs, please contact me. I intend to use my social media platform and my contacts in whatever way I can to help patients get the drugs they need. That includes holding insurance and pharmaceutical companies to account for their actions–for high drug prices, for bureaucratic hassles, for decisions based on profits and not patient lives. In fact, right now my friend Champagne Joy is waging her own campaign to get her combination therapy drugs. Her insurance company, Cigna, which made $2.3 BILLION in profits last year, is refusing to cover her drugs. You can help her out by tweeting about it, using the hashtag #SaveChampagne.

This battle has been won, but there are more battles to be fought, and I won’t stop fighting until all patients can access the drugs that they need.

Denial, Part 2

If you’ve been following me on Twitter, then you’ll know already that the Blue Cross Blue Shield Federal Employee Program denied my appeal of their denial of my combination therapy. Again the reason for the denial is that in metastatic breast cancer, these drugs aren’t standard of care, so they consider them “investigational/experimental.”

Here’s where the problem lies: I don’t have regular breast cancer. I have neuroendocrine breast cancer. Neuroendocrine breast cancer is very rare–about 20 reported cases per year in the US–and there is no diagnostic code for it in the insurance billing systems. There is no standard of care for neuroendocrine breast cancer because it’s so rare. Let me say that again, because this is important: there is no standard of care for my rare cancer. Literally every treatment for it is investigational/experimental.

My cancer didn’t respond to any of the standard treatments for regular ER/PR+ breast cancer, not one of them. The only thing it’s responded to is chemo and even then, it’s been hit and miss. Now we have genomic testing that shows that I have genetic mutations (NF1, BRAF, MET) that have drugs to match them, drugs that have a chance of effectively targeting my cancer and keeping it from killing me so quickly.

But because my rare cancer doesn’t have a code in the insurance billing system, because it’s coded as just breast cancer, my insurance company has refused to pay for the drugs, calling them investigational/experimental and not standard of care. Which is exactly what every other treatment for my cancer is: investigational/experimental and not standard of care.

So basically, my claim has been murdered by bureaucratic crap. The only thing I can do at this point is appeal to the US Office of Personnel Management (because it’s a federal employee plan) and ask them to overturn the denial. This would require a hearing, which means I’d need a lawyer. And in the meantime, I still don’t have the drugs.

This brings us to our current efforts to get me these drugs: applying for patient support programs with the drug manufacturers, Novartis and Genentech. The patient advocate at Avera Cancer Institute has helped me apply for both. Now, Genentech (maker of Avastin) has a pretty good program and we’re hoping to qualify under their income cap after they consider things like child care costs and medical expenses. Novartis (maker of Mekinist) has a lower income cap than Genentech and I’m not sure I’ll qualify without divorcing the husband I love so that I become, on paper, a single mom of two kids living on my disability pension and SSI. 

On top of the obvious emotional nature of getting a divorce when you’re happily married just to try to stay alive, a divorce would cause financial upheaval for us–my husband is currently on my insurance plan, so he would have to get new insurance through his workplace, whose plans aren’t as good as mine, and this would be an added cost for our family. In addition, his survivor benefits upon my death will be impacted unless we carefully word our divorce decree. Again, we’d need a lawyer to handle all this for us, which is another cost. And a divorce takes time; you can’t just go to court tomorrow and walk out of there divorced. Time is not something that I can waste.

So, if Novartis doesn’t approve us under the program, we’re also considering buying drugs in Canada. I haven’t researched any of this yet but old folks have been doing it for years, so why not me? We’re only 2 hours from the border. Or, maybe we do a GoFundMe, because in 2016 that’s how we’re all financing our healthcare apparently.

There’s a question that needs asking: why are these drugs so expensive? Genentech’s parent company, Roche, had a net income of about $9 billion last year. Novartis’s net income in 2015 was $17 billion, up $7 billion over over its 2014 figures. Meanwhile, patients are dying because they can’t access these companies’ drugs without bankrupting their families. Or divorcing the husband they love.

As I’ve said, I’m still hopeful that Genentech and Novartis will come through for us without putting us through a divorce we don’t want. And above all, I want to express how grateful to everyone, from the folks messaging me and tweeting at me with words of support, to the amazing patient advocate at Avera, to my team of doctors. All of this effort to try to save my life leaves me speechless. There aren’t words to describe what you all mean to me.

I promise to keep you all posted about how everything goes down. I’m hoping to have a quick response from Novartis and Genentech and I’ll be sure to let you know when I hear from them. Until then, keep tweeting encouraging notes to both companies, using the #SaveBeth hashtag. We need them on my side right now. Be kind to them, and hopefully they’ll be kind to me!

Denial

My insurance company, the federal employee Blue Cross Blue Shielf plan aka FEP Blue, denied the drugs for my combination therapy. They’ll pay for doxil without even a preauthorization necessary, but they denied authorization for both of the immunotherapy drugs. We went with Avastin over the cabozatinib hoping they’d approve it, but they didn’t. 

So, now we appeal. It took a week for FEP Blue to send me the denial letter for the trametinib, and because it’s an oral drug, I have to be the one to file the appeal, so we couldn’t get started on that process until this week. The Avastin appeal has to be filed by #bestdocever and he didn’t get the denial until this week either. Because it’s not like it’s important to get this information quickly when the patient has terminal cancer.

I’m very grateful to have the team at Avera in my corner right now. Their patient advocate has written tons of these appeal letters, so she’s helping out with the appeal process. She’s also appling to Genentech (maker of Avastin) and Novartis (maker of trametinib) on my behalf to seek support via their patient assistance programs. I’m hopeful we’ll be able to get them to help without me going through the charade of legally divorcing my husband so I fit under their income caps.

Here’s the thing. When I look at the data on this treatment approach, and I see that the 30% of patients who couldn’t get combination therapy are all dead, and that 93% of the patients who got combination therapy are alive? Yeah, I don’t just see numbers. I see people. I see my friends. I see Michelle and Jill and Holley and Carolyn and Sarita and Adrian and Ishuan and Jean and Vickie and Jody and Maria and and and…and I think “What if they lived long enough for combination therapy? Would they be alive right now?”

I’m not gonna lie, I’m pretty depressed right now. I’m putting on a brave face most of the time, but it’s not fatigue keeping me in bed right now. It’s a sense that I’m fighting an uphill battle to stay alive. And I can’t help thinking, if it’s this hard for me, an attorney who knows how to navigate systems and has the ability to demand the best treatments, what hope is there for the broader cancer community to stay alive? What hope is there for my friends who are too sick to fight their insurance companies? 

When healthcare decisions are made based on costs and not on saving lives, this is the outcome. We see it happening all over the world, not just here in the US–talk to anyone in the UK about how NICE has made it impossible for them to get access to the cutting edge drugs that are standard of care in the US. But here the disparities between rich and poor, between savvy and unsavvy consumers, feel particularly cruel and despicable. It especially hurts when you realize that the annual cost of my drugs is about the same as one day of pay for an insurance company CEO. 

Does all this make you angry? Does it make you want to help? Good. It SHOULD make you angry. It SHOULD make you want to help. Here’s what I need from you. I want you to share this blog post around social media. Post it on the FEP Blue Facebook page. Tweet it at @fepblue on Twitter. And use the hashtag #SaveBeth. 

Tell them what you think of their decision to deny me the combination therapy that could keep me alive long enough to see The Boy start middle school. Tell them what you think of their business model that puts profits ahead of patient lives. Tell them that I’m not ready to die. Tell them that I deserve to live. Beg them for my life. 

URGENT ALL CAPS ACTION ALERT

You guys, we have work to do, TODAY. I need you all to call your Congressional Representative’s office, and tell the person who answers the phone this:

“I am calling to ask the Representative to sign onto the bipartisan Dear Colleague Letter to the National Cancer Institute regarding metastatic cancer research, sponsored by Rep. Peter King and Rep. Chris Van Hollen. It is imperative that we get more Congressional representatives to sign this letter immediately in order to save the lives of the 540,000 Americans who die each year of metastatic cancers.”

Don’t know who your representative is? No problem. Just call 202-224-3121 and they’ll put you through to the right office.

We need to get as many signatures as possible on that letter to ensure the letter has the maximum impact, and we need them in the next 36 hours. Don’t wait–CALL TODAY. 

I’m Old

It’s official, you guys: I’m old. Not because I’m 40–that’s solidly middle-aged, in my opinion. No, I’m old because I live like an old person. No, seriously, I do. Let’s go through the good and the bad of being old, shall we?

GOOD: All my life I’ve watched commercials for adjustable beds and thought “Damn, that looks amazeballs, I want one of those.” So last year we bought one, because I spend a TON of time in bed because of treatment-related fatigue. And guess what? IT IS SO MUCH MORE AWESOME THAN I EVEN DREAMED IT WOULD BE. Want to watch TV in bed with the kids? Adjust to Zero G. Want to eat lunch in bed? Adjust the head higher. Want to go to sleep? Adjust to flat. Husband snoring? Adjust to Partner Snore setting. Me snoring? He adjusts to Partner Snore setting. Why on earth didn’t I get one of these things sooner? Worth every penny, my friends.

BAD: Since I’m still on cisplatin/etoposide (we’re still waiting for approval–or not–of combination therapy), I’m spending about a week of every 3 weeks too tired to do much of anything but laying in bed. Like, we’re talking so tired that the Hubs has to run me a bath because a shower isn’t feasible and that’s after several days without bathing at all and I smell HORRIBLE. It sucks being reliant on other people to do things I used to do for myself.

GOOD: I’m retired. I’M RETIRED YOU GUYS. Y’all still going to work? Hahahahaha suckers! Best perk of my terminal cancer by far. I missed being a practicing lawyer at first, but now? So happy I decided to take that disability retirement. So grateful it was a possibility for me, too. I figure that working for the feds instead of at a private firm, I made about half what I would have, but now I’ve got a fatty life insurance policy, a fatty health insurance policy, and a livable disability retirement package, and I probably would have had none of that working at a law firm. 

BAD: No longer having much in common with my peers. Y’all bitching about your husbands not pulling their weight? It’s the opposite in our house–I’m the one not pulling my weight. Worried about your bodies not looking so hot anymore as you age? Yeah, I have no breast. Bags under my eyes are the least of my woes. Feeling nostalgic about your kids growing up too fast? I’d give anything for my kids to grow at twice their current rate, so I can be here for more milestones. This is why I avoid kid birthday parties, I just can’t do small talk anymore.

GOOD: I give no fucks. Old people? We give no fucks, man. We gave away all our fucks a looooooong time ago. We’re out of fucks. The fucks are all gone. There are no more fucks to spend. So when some jerk tries to tell me I’m pushing too hard for cancer research or I shouldn’t swear so much or whatever else, I don’t give a fuck. It’s very liberating to give no fucks. It reduces my stress level immensely.

BAD: I spend a lot of time thinking about death. When you’re old, and your friends are old, you have to watch a lot of them die. Which is made all the more traumatic knowing that I’m going to die the same way. I guess I lied, I do have a fuck to give about that. That’s my only fuck left, though.

GOOD: Let’s end on a good one. Being in a city, I am living in a golden age of delivery services. Too fatigued to go to Costco? No problem, there’s an app for that. Need lunch and you’re too tired to stand up long enough to make something? There’s an app for that. Did you run out of scotch? THERE IS AN APP FOR THAT. Just today I had an amazing bagel breakfast sandwich and a fresh orange juice delivered to my house from a local deli. I didn’t even have to get out of my pajamas for it.

You guys, I’m old now, so I’m going to give some advice because that’s what old people do. Old will come for almost all of you, even if it comes earlier than you thought it would. Be prepared for the bad that comes with it, but embrace the good too. And live as well as you can, no matter how old you are.

I’m 40! It’s Fabulous!

You guys, it’s my birthday! I MADE TO 40!!! I was hoping to have a big blow-out birthday like I did for 30 (rounded up my girlfriends and went to Mexico on a cruise–man, dual income no kids was a good time, amiright?) but of course I’m back in chemo world again, so that’s not possible. But I thought of something better anyway, because back in 2006 I didn’t have a blog, and I hadn’t founded a grassroots organization committed to changing the landscape of metastatic cancer through direct action. 

So here’s my big birthday wish, and I need all of your help to make it come true. I want you to go to metup.org, and click on the donate button. It’ll take you to a donation page for METUP’s fiscal sponsor, Social and Environmental Entrepreneurs. (We’re proud to be a project of SEE and very glad they’ll be filing all the tax paperwork for us next year instead of us having to file it!) And then I want you to donate, but not just any donation amount because it’s my 40th birthday. 

So, donate $4. Your latte costs more than that.

Or $40. That’s like 4 bottles of wine. I know it’s a sacrifice but I also know how much wine you drink.

Or $400, #bestdocever who just got back from a vacation to JAPAN.

Or $4000. Yeah I see you tech worker high roller driving a Tesla to work in my husband’s office. Don’t pretend like you don’t have the cash

Or $40,000. Hi Joan Lunden’s staffer who is so nice when we DM on Twitter! OK, at least retweet this one, will you? 

Or $400,000. Shut up, it could happen. No YOU’RE being delusional.

You get the idea. 4’s. Because 40 is FABULOUS. Or it will be, if you make my birthday wish come true!

DONATE HERE!!!

The Dakotans

I went to Sioux Falls, South Dakota to meet with Dr. Brian Leyland-Jones of Avera Cancer Institute, who is a guru of combination therapy for cancer. The idea behind combination therapy, which is outlined in Dr. Vince DeVita’s outstanding book “The Death of Cancer” (people with cancer: READ THIS BOOK), is that cancer doesn’t just grow one way–it has LOTS of pathways it can take to grow, because cancer is smart as fuck. So if you block one pathway, it’s just going to use another pathway to grow. So, the idea behind combination therapy is to block multiple pathways, so the cancer can’t just get around the one drug you give it. Think of it as like you’ve got a serious bacterial infection and they give you a combination of antibiotics, like Augmentin, to make sure you really kill the bacteria and it’s not resistant to the one antibiotic you give it. Right now, the standard of care in metastatic cancer is to give one drug, then another, then another, then another, and eventually you run out of drugs and you die. This is why median survival is 33 months for metastatic breast cancer. Dr. Leyland-Jones and Dr. DeVita believe we can do better, and in fact, Dr. DeVita developed a protocol involving 4 different chemos all given at once to Hodkins patients. And guess what? Hodgkins went from a a death sentence to being frequently curable. Other doctors would say “Do your patients still speak to you after the hell you put them through?” And he says, “Yes, they send me pictures of their grandchildren 30 years later.”

So. I went to Sioux Falls for a consult, with the full blessing of #bestdocever to talk to Dr. Leyland-Jones about what combination therapy he’d recommend for me. As many of you know, I have a rare type of cancer: neuroendocrine breast cancer. Neuroendocrine tumors usually grow in the gut or the lungs–there’s only about 20 US cases of neuroendocrine breast cancer reported per year. The fascinating thing is, my cancer acts like neither a breast cancer nor a neuroendocrine cancer nor a neuroendocrine breast cancer. In fact, Dr. Leyland-Jones says my cancer is the most bizarre one he’s ever seen–there is literally no neuroendocrine breast cancer anywhere in the literature like mine. If you doubted that I’m a special snowflake, now there is scientific evidence that you’re wrong.

Before I went, I had both Foundation One and Guardant 360 testing. Foundation One tests a biopsy of an existing tumor (in my case, my liver) and Guardant tests your blood. Both of them showed that my cancer is heavily driven by a TP53 mutation–in fact, Dr. Leyland-Jones said he’d never seen such a high TP53 score before. (I am not just an oversharer, I’m an overachiever.) Currently there are drugs in trials for TP53, but nothing approved for any cancer type. In addition, I have a MEK amplification and an NF1 mutation.

The good news is, there are drugs for both MEK and for NF1. Those drugs are Cabozantinib and Trametinib. Cabo is approved for renal cell and medullary thyroid cancers. Tram is approved for melanoma. Neither is approved for breast or neuroendocrine cancers. They also recommended we pair those two drugs with Doxil (which is approved for breast cancer, it’s a chemo drug) and they think I will have good success on this cocktail.

Now here’s the problem. Since Cabo and Tram are not approved for my organ of origin, we’re going to have a hard time getting them approved by my insurance. We expect an initial denial and an appeal will have to happen. I have very good insurance but this is waaaaaaay outside the box so it’s entirely possible I won’t get approved for it. The next step after that would be to ask for the drug companies to offer it through their patient assistance programs. Those tend to have an income cap around $100,000, which means to qualify I’d likely have to legally divorce The Hubs, which comes with other consequences financially for us, not to mention WTF I love my husband and he loves me and we don’t want to get divorced WTF.

If we can’t get the drugs covered, the cost per month would be around $12,000. No I’m not making that up. In my 401K I have about $100,000, so that’d cover less than a year of treatment.

So. Now we start the process of trying to get access to the drugs. The patient advocate at Avera is a badass and when I told her I’m happy to do some social media shaming of whoever won’t pay for the drugs she said “I knew I was going to like you.” I’ll also be leveraging contacts at Novartis and anywhere else I have contacts. (Know anyone at Regence Blue Cross/Blue Shield here in WA? Because they’re the plan administrator for my insurance.) This will take several weeks at best. In the meantime, I’m staying on Cisplatin and Etoposide, the chemo cocktail that’s been fairly successful for me in the past and that I hope is doing some good work kicking butt for me right now.

I can’t say enough good things about the team at Avera. If you have MBC, GO SEE THEM. They have been running a trial for 2 1/2 years now in which they give as many patients as possible the full cocktail that their genomic testing suggests, and following patients who for whatever reason (health status, insurance fuckers) couldn’t get the full cocktail. These were heavily pretreated patients, on their 4th or 5th line of therapy. Of the patients that got the full cocktail, 2 1/2 years out, they’ve had a a 93% response rate (only 7% of patients progressed) and 30% are NED. Of the patients who didn’t get the full cocktail, all of them are dead. ALL OF THEM ARE DEAD. The other beauty of their approach is, you go see them for a consult, then your doc prescribes the cocktail, so you don’t have to go to Sioux Falls for treatment. You just need a doctor willing to think outside the box and prescribe something that isn’t remotely standard of care yet–knowing that, standard of care leads to 33 months median survival for us people with MBC.

Feel free to ask questions, I’m happy to answer them. And if you’d like me to hook you up with the Avera team, drop me a DM on Twitter and I’ll connect you.

Building a Mets Community Worldwide

This week, the great folks from Living Beyond Breast Cancer are running a campaign called #stage4lifer and they asked me to write a bit about taking action to combat metastatic breast cancer. I’m a proud graduate of LBBC’s Hear My Voice program and I urge anyone who wants to be an advocate for our community to apply to their 2017 program as soon as it opens! So I’m delighted to contribute to their campaign with this blog post–and I’d love to see all of you getting on social media to help share things with the #stage4lifer hashtag!

I’ve recently taken some time off from MET UP to deal with both the good (#EpicCaldwellVacay) and the bad (treatment). It’s not something I wanted to do, because for me, cancer activism is one of the few things that has made this experience, this life, make any kind of sense. I watch my friends dying, I watch my family suffering, and I just can’t sit idly by and NOT try to do something to change the landscape of metastatic cancer. But sometimes life and cancer get in the way of that work, and it’s frustrating for me to step away from it.

Which is why I was so excited to meet with the members of METUP UK when I was in London in August. That’s right, METUP has gone international! We met up (pun intended) at the lobby bar of my hotel and talked for hours like old friends–which I suppose we are, since we’ve been chatting on Twitter for a long time. 

The thing about metastatic cancer is that even though we live thousands of miles apart, our experiences of living with this disease are so similar. We’re struggling through treatments that make us bald or in pain or sick; we’re thinking about how to plan for our deaths that will come to soon; and we’re gutted every time one of our friends dies in this godawful plague we’re living through. No matter where I go, I see that metsters–that PEOPLE–have the same hearts inside. And we all desperately want to live.

Of course, there are some differences in other parts of the world. In Africa, the picture is much more dire. Patients in Nigeria, for example, often have to wait a year to get into treatment because of lack of cancer resources, and by then, many have developed metastatic disease. The primary treatment for them is mastectomy and radiation, which of course, isn’t effective for the systemic disease that is metastatic cancer. In addition, the cost of health care is too high for many people to afford, so they take out loans to pay for their radiation, then sleep on the side of the road by the hospital (because there’s only a couple of hospitals that do radiation in the entire country) because they don’t have any money for a hotel. Just imagine going through non-curative radiation treatment while sleeping by the side of the road.

I think it’s easy to think of people far away as The Other, as Not Like Us. But they ARE just like us. And they’re suffering. This is why building a metastatic community worldwide is so important–so we can lift each other up, and fight for each others’ lives. Once you meet another person with metastatic cancer, it changes you. Advocacy for metastatic cancer is no longer about you–it no longer feels selfish. It feels completely selfless and vitally important. We’re all going to have to be in this together, or we’ll die alone. 

Nurse Logs

There’s a trail at the Girl Scout camp where I went as a kid and worked as a counselor in college called the Roslyn Bay Trail, and it’s where I first learned about how a forest renews itself when trees die. What happens is, when a tree falls down, the nutrients in it feed new plants–first small plants like mosses, then bigger plants like ferns, and eventually new trees grow out of the remains of the tree that fell. We call these downed trees nurse logs, because they nurture new life even through their death.

Trees have been a metaphor for my experience with metastatic cancer almost from the beginning. The trees down here at the base of this cliff are the people I’ve met in the world of cancer–my metastatic sisters and brothers. I did a video for Living Beyond Breast Cancer during their 2015 mets conference, the one where I met Jennie Grimes and we held the first die-in, and in it I talked about how the women in the video with me are the lovely trees in this horrible swamp of disease we live in. And whenever the four of us would message each other or post on each others’ Facebook timelines, we’d use the tree and heart emojis, to send tree love to each other.

One of those four trees is gone now, our beautiful Adrian, and now only three of us are left. She’s not the only tree I’ve lost recently–of that original Hear My Voice training program in 2015, 6 of us have died, and another is in hospice. And it’s killing me. It’s slowly killing my spirit just as surely as cancer is slowly killing my body. When Jennie enters hospice, when Jennie dies, I don’t know how I’ll keep going on. And I know she feels the same way about me.

The only thing that brings me any sense of meaning to me these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing. 

And someday this forest will cover the world.

New York New York, A Hell of a Town

One of my favorite Simpsons episodes is when the family goes to New York City because Barney has gotten drunk, stolen Homer’s car, and left it at the base of the Twin Towers. In order to retrieve the car, Homer has to wait by the car for a police officer to come by, which only happens once a day. Of course Homer drinks too much crab juice with his kavkalash and has to pee, and misses the police officer, sending him into an insane rage. Meanwhile, the rest of the family has a magical time in the city, but Homer drags them away, car destroyed from his decision to remove the boot on its tire by using a jackhammer. As they drive out of town, the kids ask if they can come back to New York sometime, and Homer, his face pelted with garbage because the windshield is gone, mutters “We’ll see, kids.” 

I was really worried that The Hubs would feel that way about New York City, because that’s how I felt about it the first times I visited in the pre-9/11 era. I just felt completely overwhelmed, like I was becoming more and more neurotic the longer I was there. But my last trip to New York, in January 2015, was completely magical and I realized that New York is actually pretty fantastic. And luckily, everyone in the family felt the same. Some highlights of our stay:

1. Our hotel, the Refinery NYC. Our room was enormous by New York City hotel standards, and it had an amazing rooftop bar with a view of the Empire State Building. The service was outstanding, from the front desk staff to the bellmen to the concierge who recommended her favorite bagel shop and arranged us a limo to take us to the pier in Red Hook.

2. Front row tickets to Wicked. The show was incredible, of course, and so was seeing it from the front row, where The Kids could peek into the orchestra pit and really see the expressions on the faces of the actors. Also, I had no idea that the dad from Girls was playing the Wizard, so that was a nice surprise. My favorite part of the experience was watching the kids watch the show, especially The Girl, who was completely enchanted the entire time. I was worried that she and The Boy would have trouble sitting through the whole show, but I mean, it’s such a great show, it wasn’t a problem at all. I think that’s a memory that will stay with them forever.

3. The Boy running a 5K across the Brooklyn Bridge with my college BFF. Poor kid was exhausted after, especially because it was so hot, but I’m very proud of him, and I think he’s proud of himself too. 

4. We bought The Girl her first American Girl doll from the store by Rockafeller Center. HOLY HELL THAT PLACE IS NUTS. The Girl chose the MaryEllen doll, and then we got her and the doll matching outfits, because of course we did. Dear Grandparents, Aunts, Uncles, and anyone else: American Girl crap is what she wants for her birthday and Christmas this year.

5. Eating in Little Italy. My mom’s stepdad was Italian and I like to joke that he was in the mafia, since he was a casino doctor in Reno in the 1950’s and how many Italian casino doctors were there in Reno and the 1950’s who weren’t at least connected? So, I have an obsessive love of Italian food, and it was really amazing to be in a place where immigrants like his parents came to start a new life in the new world.

6. The Statue of Liberty. No, we didn’t go all the way to the top, because dude, who the hell wants to walk up all that way, and also all the tickets for the crown were sold out. But we did have pedestal tickets, and that was pretty cool. Pro tip: be sure to put on sunscreen, because now I have a really funky tan from the shirt I was wearing. Speaking of imagining immigrants coming to the new world, wow, imagine seeing Lady Liberty as you fled from poverty, persecution, pogroms…a truly amazing experience.

7. Taking The Kids for their first subway rides. I am a firm believer in teaching kids how to use public transit. Partly this is because I don’t drive, and partly it’s because I remember being a teen and having so much more freedom because I was able to get around my city on public transit. It’s just a skill set that I think everyone should have, and it was fun teaching the kids to swipe their fare card and find the right platform for the right train. And also teaching them not to touch anything because eeeeeew germs.

8. Sailing out of New York harbor. WOW. I mean, WOW. I got all verklempt as we watched the city getting farther and farther away, wondering if I’ll ever get to see it again. And then sailing under the Verrazano bridge, juuuuuuuust barely making it without hitting the bridge deck–everyone up on deck cheered. 

But the rest of that story will have to wait for the next installment of this travelogue, because now it’s time for afternoon trivia in the Golden Lion Pub onboard the Queen Mary 2.