#metsmonday – How this mess began

Cancer patients have different “cancerversaries” -diagnosis, surgeries, chemo start and end dates, radiation start and end dates. Since 2013, I have been glumly noting October 28th as my “lumpervercery” – the date the cancer was definitely growing inside me. Not that I was seriously worried about cancer at first, and the cancer had started growing well before, maybe even years before. But it’s a date that doesn’t escape me.

I was 28 years old, unmarried but dating my now-husband long-distance and livin’ the dream in NYC, tryin’ to make it big. Well, more like trying to make it to the middle class. I had moved there for a job after over a year of fruitless job searching, and fell in love with the the city, despite a somewhat hardscrabble life on nonprofit wages.

I shared a run-down apartment out in Flushing with a roommate. The window in my bedroom let in a draft, so I was snuggled up in my fluffy robe. It was late, I had said goodnight to Younes hours ago and I was just wasting time. I yawned, ripped off my robe and prepared to dive under the blankets.

With that action, I froze. Under my long t-shirt, I felt something large and hard in my left breast. It was like it had came out of nowhere. My first thought was my Grandma de Fiebre. She had had breast cancer some decades back. Was I going to follow in her footsteps? But she was older and the father’s side of the family doesn’t count as far as family history (the latter is not true and anyway, I had some breast cancer unknowingly brewing on my mom’s side). My heart was racing, but it was much too late to call either Younes or my mom. And wasn’t there other causes of breast lumps in young women? I jumped on Dr Google.

What I read was instantly reassuring. Breast cancer was very rare in women under 30, only a .05% of developing it at that (why is it that I don’t buy lottery tickets again?) Also, there were like, 56875432564 causes of breast lumps besides cancer. Also, I had had a clinical breast exam at my annual back in January, did self-exams and had just come off a summer of swimming, peeling a tight suit on and off everyday. I knew this thing couldn’t have been brewing long. If it were cancer, I had “caught it early.”

But I also found this, the story of a young woman under 30, healthy slim, runner, vegetarian, who was living with breast cancer. She had been misdiagnosed for a year and had Stage IV. That sufficiently freaked me out enough that I figured “better safe than sorry” and vowed to find a doctor the next day (I didn’t have one yet as I had just moved). With that, I slipped into sleep, naively unconcerned.

#metsmonday – How this mess began

#metsmonday – Stage IV Stampede

About a week and a half ago, I had the honor of participating in the annual Stage IV Stampede in Washington DC, the flagship event of the MBC advocacy community. This event is only in its second official year and third year since the idea was formed. Holy crap, it has grown impressively in such a short period of time. Two years ago, as I can recall from people’s blogs and the little I saw on FB, a small group of advocates held a die-in on Capitol Hill, and then met Congressional representatives. Last year, it was an official event and a lot bigger, and this year, it was even bigger and attracted even more attention (Washington Post FTW and Mira Sorvino is the sweetest but I am as clueless as you can get about celebrities so I didn’t know why everyone was talking about her and then I looked her up later and was like “wow, Champagne’s friend is a movie star. I just thought she was a nice lady who really missed her friend and wanted to help us.”)

The Congressional visits were definitely the coolest part for me. I have never engaged much with my representatives. Honestly, I had always been too intimidated. The first time was back in 2015, during the emailing campaign mentioned above. But the current political shitshow in this country has pushed me into calling and emailing about things such as affordable healthcare and increased funding for medical research.

This was my first time on Capitol Hill though. It was just so amazing being in those buildings, where so much history has been made, where so much of the foundation of our country happens. Unfortunately, we met with the aides of our representatives instead of the representatives themselves. But Team Florida had plenty to say in these meetings! Overall, visited the offices of both senators and two House representatives. During one of the visits, I joined two sisters who had lost their mom to MBC. I was the only actual MBC patient in that meeting so I felt like I had a chance to really tell my story. I was also encouraged by the support for increases in medical and scientific research funding, even from the Republican side.

It was overwhelming at times though. To hear my situation being described over and over again in such stark terms – the words “terminal” and “three year life expectancy” being thrown around – was a punch in the gut, even though I don’t pay that much attention to the stats and averages (after all, I had a .05% of getting breast cancer in my 20s in the first place, so THAT stat was obviously meaningless). But that’s why we advocate – to CHANGE these numbers. I hope everyday I will survive long enough to live in a world where MBC can be treated like diabetes or HIV – still a serious disease but one where the life expectancy is near-normal. And if that happens, maybe an actual cure will eventually happen as well. Wouldn’t that be wonderful?

#metsmonday – Stage IV Stampede

Belated #metsmonday – Losing friends, losing decades

I just got back from a great advocacy event in D.C. and I thought at first I’d post about that. But that will have to wait till next week. Right now I’m sad. I’m sad and I need to write about it.

I have mentioned Beth Caldwell before, who has been the heart and soul of the metastatic breast cancer advocacy and a person I am proud to call a friend. She has had a lot of ups and downs the past few months, which finally culminated in this announcement.

I remember living in Swaziland, and while I really loved living there in many ways, disease and death everywhere I looked wore on me over the two years. I wasn’t the only one. Our medical officer actually gave all departing volunteers a prescription for grief counseling when they returned to the US to deal with the effects of living in a high-death environment. Well, the life I’m living now has many similarities to what I experienced in Swaziland, except the stakes are much higher because I’m one of the ones in line to someday die. And I can’t escape the disease, the losses, after two years of service.

I “met” Beth online three and a half years ago on a message board for young breast cancer patients. I had just been diagnosed with high-risk Stage IIIc and she had been diagnosed with Stage IV denovo (meaning Stage IV from the beginning, there was no recurrence after treatment for an earlier stage). By the way, being diagnosed Stage III or IV from the start is not a failing of the patient not “finding it early” enough. Both Beth and I were too young for mammograms and had extremely aggressive cancers that popped up out of nowhere, despite self and doctor exams. Also “finding it early” is no guarantee of a cure – lots of Stage IV patients recur after an initial Stage 0, I or II diagnosis.

I followed Beth’s blog from her initial diagnosis of only a few bone mets (incurable but potentially survivable for many years) to progression throughout her organs to the relentless march of cancer through her body that has been resistant to every treatment regime, prescribed by talented doctors, thrown at it. And along the way, I learned so much from her.

I was reading her old posts last night, trying to make sense of why one person’s cancer can be so well-behaved yet another person’s can go completely off the rails despite the same treatment. Of course there is no real explanation. But I came across this post, which hit me in the gut. Beth is right, old IS fucking beautiful.

I had never thought much about being old-old, but I have in the past looked very forward to grown-up, domesticated life with a wonderful husband and children. It was something I got really excited about when I was younger. My parents have a great marriage and I had a wonderful childhood, so it was something I thought would be a great time in my life. Get married, enjoy a year or two of newlywed bliss, have three kids, and spend our days enjoying family life. At 28, when I was diagnosed, I wasn’t quite there, but I felt like I was finally getting closer.

My boyfriend at the time did become my husband and we enjoyed our first year of married life as much as we could in between chemo infusions and radiation appointments and my regularly scheduled meltdowns about progression/recurrence, but we had lost the innocence most newlyweds have. Kids? Having three is out the window. We still hope to have one via surrogacy, but if we succeed, that experience will be marred by constant wondering how much of his/her life I’ll be around for.

Of course I wish for a cure, but I also would be happy to see this disease become a chronic one, where, even if I had to take pills and have infusions and injections, I’d still have a good chance at a normal lifespan. Where this disease would no longer steal decades from people. But there needs to be a shift in our priorities regarding breast cancer for that to happen. There needs to be less pink and more research. Beth worked so hard for that. I will honor her and keep moving forward with what she started.

Belated #metsmonday – Losing friends, losing decades

#floridafriday – Living in a post-hurricane Florida

For myself and my family, living in a post-hurricane is about the same as living in a pre-hurricane Florida.

We were exceptionally lucky. Younes and I are camping out at my parent’s in Naples, since we are both out of town so much. Naples was hit hard, but our neighborhood escaped with little damage.

We were all out of state for the hurricane, so nobody had to ponder whether to evacuate or not. We left the state when Irma was barely a mention and returned well after the hurricane came through, so we missed the whole thing. And if anyone is wondering if I’m disappointed I missed the excitement, the answer is i have enough excitement living with Stage IV cancer, so no. I was very happy to skip Irma completely.

A 10-15 foot storm surge was predicted that never materialized. My parents live right on the bay to the Gulf, so they were worried that the house would be so flooded they would lose it. I worried about former coworkers and metasisters both in Naples and the Tampa areas who had decided to ride it out.

My parent’s house was fine. Even the avocado tree I mentioned before might be salvageable. The pool screen was ripped from the cage and lots of debris got into the pool, but it is back to sparkling now. House didn’t have a drop of water in it and power was back by the time my parents got back a week later.

Younes and I had our car at the airport, it was fine. We have a storage space up in the Tampa area which sustained no flooding or damage. While we want to be homeowners, it was nice to have few possessions to worry about.

Everyone I knew got lucky as far as damages. The worst story in my social circle was a friend who was forced out of her house due to minor flooding when eight months pregnant. Her family is staying in a family member’s condo and they won’t get to bring the baby home until everything is cleaned up in a month or so.

Naples has a lot of trees and signs down. That has been the most noticeable sign of damage. The city was spared serious damage to it’s older buildings and structures.

Residents of trailers and manufactured homes bore the worst of the destruction. This was particularly evident in the Florida Keys. Working-class residents remind us of the important work they do and that they should not be forgotten.

“What’s happening is that all the money is coming in down here in the Keys and its forcing the lower income people out,” he said. “We’re the people that are serving you your coffee in the restaurants. We’re the ones building your sheds. And we’re the … people doing the work for the rich people you could say. There’s no need to take it away. We just need to rebuild.”

Everglades City, a long-time jump off for my family for fishing expeditions, sustained similar damage – and weeks out, life is far from back to normal.

Let’s hope it will be a long time until the next one.

#floridafriday – Living in a post-hurricane Florida

#sciencesunday – Pediatric brain tumors

Although today is October 1st, which marks the beginning of Breast Cancer Awareness Month (known among my circle of MBC ladies and early-stage allies alike as “Pinktober”, “Stinktober” or Puketober” – more on why during tomorrow’s #metsmonday), I’m not going to write about that. I’m going to write about something that just ended – Childhood Cancer Month, which is during the month of September.

Even though I identify as agnostic, when things are tough, I try to believe that there’s a plan, a larger meaning for all this suffering. Then a kid dies of cancer and it’s like “Nope. Life’s just a motherfucker.”

Younes had hometime over the weekend and we wanted to watch some TV together. We have different tastes – I’m addicted to Law and Order and crime shows while he prefers Westerns and action movies. So we started watching back episodes of a show we both like, which is “American Ninja Warrior.” I was looking for a break from thinking about cancer. Joke’s on me.

The contestants usually have some back story about overcoming adversity and such, but then a back story came on that reduced us to tears. A mom was competing. Her son, Jacob had loved the show. He had died a year ago of an aggressive form of medulloblastoma, a brain tumor found mostly in children. He was five. FIVE.

There has been so much progress in treating childhood leukemia that pediatric brain tumors are now the leading cause of death among childhood cancers. Pediatric brain cancers are difficult to treat for the reasons any brain tumors, primary or metastasized, are difficult to treat – the difficulty in getting drugs through the Blood Brain Barrier and the unique fragility of the delicate brain tissue – which is why we need more translational research across cancer types. But the distressing thing is that funding has dried up.

I am so upset by this. Childhood cancers may account for a small number of overall cancers, just like breast cancer under 40 is rare. But our children and adolescents are our future. Our young adults are our productive work force and parents or would-be parents. I will say something that might be controversial – younger people deserve a proportionally bigger piece of the pie. And our children most of all. Jacob will never have a chance to be on “American Ninja Warrior.” That’s not right.

If you can, pleasedonate to research.

#sciencesunday – Pediatric brain tumors