Fucking Cancer

Juggling

Posted on by Beth Caldwell

A funny thing happens when your cancer brings you bad news. You share the news, and suddenly EVERYONE in your life wants to help. EVERYONE. People you haven’t seen or heard from in months, people you see all the time, people you’re very close to, people you only sort-of know. It’s wonderful to know how kind the people in  your world are when the chips are down. The problem is, it can be really overwhelming trying to juggle all that love. (That sounds dirty, doesn’t it?)

I don’t mean to sound like an ungrateful asshole, because although I am sometimes an asshole, I’m certainly grateful for all the support we receive from friends and family. Tonight my sister-in-law is bringing us dinner, the first of many that our loved ones will be bringing us during this new phase of treatment. Friends are signing up to take me to chemo sessions and watch The Kids on days I’m in treatment and daycare or school is closed. Our family simply couldn’t function without all this help, period. And we can’t say thank you enough.

And yet, here comes the but. But. I also find that when bad news comes, people don’t just want to help. They also want to spend time with you. It’s like suddenly everyone realized I wasn’t kidding about this whole “metastatic breast cancer is terminal” thing. As though they were all living with their hope that I’d somehow be the miracle, the outlier, the one who lives 20 years and then dies of something unrelated. And now they realize their hope was a delusion, and that I wasn’t just being a pessimist reminding them over and over that the average lifespan after a metastatic breast cancer diagnosis is 2-3 years, and I’m 1 year in already.

So now, everybody wants a piece of my time. They want to get together, they want to go out drinking, they want to make me laugh. They love me and they’re grieving, and they want to hold onto me, and spend time with me.

But the one thing I don’t have right now is time. Not just in the “I’m dying” sense, but also in the very immediate sense. I’m in treatment. That means that every Wednesday for the forseeable future, I’ll be at my oncologist’s office getting chemo. That’s a whole day a week that’s totally shot. On top of that, there’s the effects of chemo, which include, of course, fatigue. Fatigue is an asshole. It had me spend most of Mother’s Day weekend laying around watching The Love Boat, because that’s all I was up for. Fatigue doesn’t allow for nights out drinking with the girls, or playdates at a park. It eats up a lot of time that I’d rather be spending doing something, anything, ANYFUCKINGTHING other than what fatigue allows: laying around, waiting to feel OK again.

And here’s where I feel so incredibly frustrated that cancer is doing this to me, because I’m doing a lot of canceling of plans and saying “I’d love to see you, but I can’t.” So far, everyone’s been great about it, because they’re all lovely people, but it’s still just incredibly overwhelming, all this having to say no. I’m an extrovert, and I get my energy from spending time with people. Spending time alone sucks.

I’m trying to cope by funneling my fun into lazy activities. Like, having people over, so I can lounge in my recliner and just hang out and chat. And I’m also carefully planning my energy expenditures, budgeting my strength for a handful of big nights, like MamaCon this weekend. Living with mets is half a life in many ways, but it’s still a life. And I’m living it the best I can right now, even if it’s not the way I want to live it.

Adventures in Radiation: Gamma Knife Surgery

Posted on by Beth Caldwell

You guys, it’s Mets Monday again! I promised you a description of how my gamma knife surgery went, and today I will deliver on that promise, complete with pictures! If you’re squeamish about people having screws drilled into their skull, you should skip this post.

We arrived at the gamma knife clinic at 6:30AM, which is a brutally early hour of the morning, especially when one isn’t allowed to eat or drink before the procedure starts. And yet I managed to be perky, because that’s how I roll. I mean, being a grouchy jerk when you’re having horribly crazy tortuous things done to your body is perfectly understandable. But when you put on a smile and ask the nurses how their weekend was, I mean, that positive energy sent out into the world has to be a good thing, right? Besides, it’s not the staff’s fault that I’ve got cancer, so why take it out on them?

So. There I am, at the clinic, in the wee hours of the morning, being perky despite a drastic lack of caffeine. This is me hanging out waiting for the show to get started.

  
Yeah, that’s my t-shirt that says My Oncologist Is My Homeboy. Because he is. 

Next, it was vitals and IV time, and of course, my very favorite thing, Ativan. Ativan works for nausea AND anxiety. Good stuff. See how calm and mildly stoned I look? 

  
Then came the screwing in the skull part. So, the way gamma knife works is, it’s a very very targeted form of radiation. So, it’s super important that they’re zapping the right spot, so they hit the tumor and not someplace else. Which is why they screw a metal frame to your head, and lock your frame onto the machine. The screws only go in a couple of millimeters, but I mean, they’re drilling in your skull. So they dope you up with fentanyl, and also inject stuff where the screws will go to make it so you aren’t in pain from the screwing. 

 
So there I am, with screws in my head and this big ass frame on my face. You can see how where they injected the numbing stuff, I’ve got like giant blobby swelling? Yeah, that’s normal for this procedure.  I joked and laughed through this process, and the nurse said it’s the first time she’s seen anyone do that. She kept saying what an easy patient I am. See? Perky.

Next they wheeled me upstairs for an MRI of my brain, to see if anything new had popped up, and to get a very very precise picture of the lesions in there. And THEN I was finally allowed to eat. And drink coffee. The Hubs (who was there for the whole procedure and took these photos–thanks Hubs!) brought me what you all probably know is one of my favorite foods: bacon.

  
He also brought me a mocha. I was so happy. 

Then we hung out for a bit–a lot of cancer treatment involves hanging out and waiting–and then it was zapping time! The machine looked a lot like a CT machine, and once I was wheeled in there, and my metal frame locked in place, they put on whatever music I wanted. I have a playlist that sounds like a cocktail party in 1963, and that’s what I chose to listen to. Except, I think maybe 5 minutes into the procedure, I fell asleep in the machine, which is apparently very common. I mean, they’ve doped you up on Ativan and given you fentanyl and whatever. Of course you’re going to fall asleep.

My zapping took about 75 minutes, 15 minutes for each spot. So, there were 3 spots in my brain that they were fairly certain were cancer, and then there were 2 spots (one of which was new on the day-of MRI) that were so tiny, they weren’t sure if they were cancer or not. But to be on the safe side, they zapped all 5. 

Then came the unscrewing. They held gauze on each hole to stop the bleeding, and then I took this selfie.

  
About five minutes after this, I’m laying there waiting to get ready for discharge, when I realize that I have blood gushing out of one of the screw holes in the back of my head. There was a lot of it, and the doctor came in and did the gauze thing again to get it to stop. While she was holding the gauze to my head, we started chatting and realized that we went to the same middle school–she was in 6th grade when I was in 8th grade. Seattle is truly the smallest town in the world.

And then, with the bleeding stopped and my vitals good, off home I went. We were home by 2PM, and one of the first things I did when we got home was make The Hubs pull out my middle school yearbook, so I could look up the picture of the gamma knife doctor, take a picture of it, and send it to my oncologist, along with a picture of my picture from that yearbook. Because I’m an asshole. I won’t share the nice gamma knife doctor’s picture here, because I’m not THAT big of an asshole, but here’s me in 8th grade. Aren’t those earrings epic?

  
Everything was going fine with recovery–I was a bit more tired than  usual, but not too bad–until my face started swelling up. Which is also a normal thing, as the drugs they injected in your skull start to drain. I looked like this.

 
WTF. Was I in a bar fight? Was I attacked by bees? The most annoying part was that it was hard to see out of that eye that’s almost swollen shut. Luckily, within a couple days it was better and I was back to looking like me again. I feel like with radiation, it’s a relatively simple procedure, like, this was one day and you’re done, unlike chemo that goes on for months, and it’s not like you’re puking after. But then, your face swells up like a balloon, or with regular radiation, you’ve got a weird shaped suntan that never goes away. Which is why radiation isn’t my favorite thing. I feel like it’s psychologically harder than chemo.

So, that’s gamma knife. This is the reality of metastatic breast cancer. It’s bizarre treatments and blood gushing out of a hole in the back of your skull, and even with all of this crap, it’s still incurable. I’m doing all this to buy myself time, but I’m still going to die with or of this disease. Today 108 Americans will die of metastatic breast cancer, even after having endured treatments like this. We deserve better. We deserve research that will find us a cure.

And another cliff. Kind of.

Posted on by Beth Caldwell

So, here I am again, at the base of yet another cliff. Except, this one doesn’t even feel like a cliff to me. It feels like I just took a step down, like, I don’t even feel like I’ve scraped my knee this time. 

Remember how I said last week that my doctor and I both suspected I was having progression? Turns out we’re both very smart, because indeed, I have some liver mets now. The largest one is 1.5 cm, and I’m having it biopsied this week to confirm it’s indeed cancer, and if so, what flavor. Let me take you in the way-back machine to last spring, when I first got diagnosed, because this will help you understand what we hope to learn from the biopsy.

So, when I first had the biopsy of my breast tumor, the pathology lab at the community hospital where I go for care decided it’s neuroendocrine breast cancer. NBC is extremely rare, like, 20 US cases per year. Not 20 mets cases, 20 total cases. Like, really extremely fucking rare. Neuroendcrine cancer in general isn’t super common, but when it happens, it usually starts in your digestive tract or your lungs, not your breast. NBC tends to be a bit more aggressive than regular breast cancer. 

My doc sent the tissue sample to a second lab, who came back with a different diagnosis, based on the exact same sample: invasive ductal carcinoma with neuroendocrine features. How these two diagnoses differ, I’m not really sure; I think it has to do with how neuroendocrine-y the sample is? But the path lab at the community hospital was like “NO! IT’S NEUROENDOCRINE! I’LL FIGHT YOU!” That is to say, they felt strongly that they were right. My doc decided to treat both the neuroendocrine aspects, and also the breast cancer aspects, by choosing chemo drugs that would work on both. And I had a pretty good response to those drugs. My breast tumor shrank such that when the mastectomy happened, it was just scattered cancer cells in a field of scar tissue, instead of a 7 cm tumor. And the hip and sternum tumors were no longer cancerous.

The thing the two pathology labs agreed on was that my cancer was estrogen-receptor and progesterone-receptor positive, and HER2-negative. Some breast cancers are positive for all three; some are positive for just one or two of those; and some we call triple-negative, because they’re negative for all three. Now, ER+ cancers like mine should respond to what we call endocrine therapy: drugs that strip the estrogen out of your body and prevent any estrogen that’s left from attaching to your cancer cells. Unfortunately, because we’re seeing all these new tumors, we know that my cancer isn’t responding to these drugs. 

So, what we want to know now is, is my cancer no longer ER/PR+? Cancers can and do evolve, the way bacteria do, and that means they do sometimes become triple-negative over time, the way bacteria become resistant to antibiotics, Knowing I have triple-negative disease will impact my treatment plan, and which clinical trials I’d qualify for. In addition, I’d like another couple sets of eyes on my sample to see if we can figure out if it really is neuroendocrine breast cancer, or not. 

And finally, we’re also going to send a sample for genomic testing. You’ve probably seen this on the news or in several recent documentaries–the idea is, we’d take a look at my specific cancer and see what kind of mutations it has. Sometimes drugs designed for other cancers will work on breast cancers that have specific mutations, so it could open up the possibility of using some other drugs on my cancer. We’re also going to get serious about clinical trials now. My doctor says he’s going to put my name on lists for any trial he thinks might help, and having my cancer sequenced could help with that.

What this also means is, I’ll be going back into chemo starting next week. I made my oncologist promise he wouldn’t screw up my book signings (I actually threatened to punch him in the nuts if he did), so y’all better be there on May 4 at Sole Repair on Capitol Hill in Seattle! Get your tickets at this link. I start chemo on May 5, but my oncologist assures me that it won’t screw up the big event at MamaCon, where you’ll get to see me, Rebecca Gallagher, Tracy DeBlois, and Michelle Back on May 15, and there will be free booze. Did I say free booze? DARN TOOTIN I DID. Get your tickets at this link.

In addition to the whole liver mets thing, we’re being proactive on those brain mets and I’m having gamma knife surgery today. I’ll write about what it’s like, and maybe share some photos, in the coming days. As my regular readers know, I usually write twice a week, but with all this treatment going on, I’ll probably be dropping down to once a week instead, but I’m committed to continuing to share my life with you guys. Because, despite everything cancer has taken from me, it hasn’t taken my fundamental need to overshare. So, you all should mentally prepare yourselves for side effect stories in the weeks to come. You’d better hope none of them involve anal burning!

The Next Cliff

Posted on by Beth Caldwell

A few months back, I wrote about how being diagnosed with metastatic breast cancer was like falling off a cliff. And that I knew that there would be more cliffs to come–the brain mets cliff, the lung mets cliff, the liver mets cliff, and the “there is nothing more we can do” cliff. Well, one of those cliffs happened last week: the brain mets one. The story of how this has all gone down is quite the tale. You’re going to be horrified and then relieved and then sad. This will be long.

So, a few weeks back, I emailed my oncologist (whom you will have realized by now is one of my favorite people–he’s not just my doctor anymore, he’s my friend) and said “So, I’m having these weird dizzy spells, could it be from the new drug I’m on?” And he wrote back and said it could be, but would I mind going to have a brain MRI out of paranoia? And I said, “Sure” and I had that MRI on April 3. My oncologist got the results almost immediately–everything looked normal. Hooray! We chalked the dizzy spells up to the palbociclib and went back to normal life.

Fast forward to April 13. My oncologist tells the team at the hospital where I get care that he is going to talk about my case during their tumor board that week. So, the radiologist who initially looked at my MRI took a second look, and low and behold, there are four small spots on it that she missed initially. She puts a note into their electronic records system that says “On further review, oh look, it’s brain mets” and says she left a voicemail not for my oncologist, but another oncologist in his office. Which, A, you re-read the scan and decided it’s brain mets and you just leave a voicemail about it, with someone who isn’t my doc? Are you kidding? And B, my oncologist’s office has no record of receiving that voicemail.

Needless to say, my oncologist was livid when he found out. If there hadn’t been a second look at that scan, the most likely scenario is that the tumors would have continued to grow and I would have developed headaches in a couple of months, and my oncologist would probably have said “Well, we just did a scan, so I’m sure you’re fine.” And I would have been screwed.

He began putting together a plan for treating me, along with the radiation oncologist I saw last year, and they put in a referral to a gamma knife clinic. Before my oncologist could call me to tell me I had brain mets and talk to me about the plan, I get a call from the gamma knife clinic. It went something like this:

“Hi, I’m calling from the gamma knife clinic, your radiation oncologist put in a referral for us to see you based on your recent MRI.”

“I’m confused, my recent MRI came back normal.”

“Uh…who talked to you about your scan?”

“My medical oncologist. I haven’t talked to my radiation oncologist since last fall.”

“OK…well…let me see if I can figure out what’s going on, and I’ll call you back, OK?”

“OK, thanks, I guess?”

At this point I send an email to my oncologist, with the subject line “Gamma Knife Clinic WTF” explaining this conversation. Within an hour, I get a phone call from my oncologist, apologizing profusely and explaining the situation. We set up an appointment for the following morning to talk things over. 

At this point, I freaked out. I took a xanax. My girlfriends came over to prop me up. This was landing at the bottom of another cliff.

The next morning, I woke up more calm. The Hubs and I dropped the kids off at daycare and went to buy donuts for the nurses, because we’re shameless suck-ups, and went to the appointment. My oncologist comes in the room and the first word out of his mouth is “Fuck.” (This would be one of the things I like about him–he swears. We’re kindred spirits.) He said he wouldn’t blame me if I decided to go somewhere else for care, he was so horrified about how all this went down. And I told him, “Are you kidding, none of this is your fault. If you hadn’t brought my case up at the tumor board, I’d be screwed. You’re the one cleaning up this crazy mess.” And then we talked about the plan.

So, step one is, I meet with the nice folks at the gamma knife clinic, who were extremely apologetic about their roll in this mess. That happens today. I’ll probably have either gamma knife or cyber knife surgery this week. It isn’t actual surgery-surgery; it’s using a very precise form of radiation to zap the brain tumors. Gamma knife involves screwing a big metal frame to your skull. With cyber knife, you’re in a mask thing that gets bolted to the table. Both are one-day outpatient procedures with few side effects.

Step two is, my oncologist wants to move that PET scan up from next month until now. Let me get sciency for a minute: so, the thing about your brain is, a lot of drugs don’t make it to your brain because of something we call the blood-brain barrier. This is usualy a good thing, because your brain is sensitive, but the problem in cancer is, drugs that may be working perfectly well in the rest of your body don’t ever make it to your brain. So, it’s possible all the drugs I’m on are doing just what they’re supposed to in the rest of my body, but just aren’t reaching my brain. Or, perhaps they aren’t working at all on me, in which case we need to change things up and head back to chemo land. A PET scan should tell us which is the case. 

Both my oncologist and I suspect we’ll see more progression on the PET. I’ve been having abdominal pain that may or may not be liver mets–and we both just have a feeling that the hormonal therapy isn’t working. PerhapsI’m standing on the edge of another cliff right now.

My oncologist said he’ll try to go easy on me with the chemo, but I told him fuck that, I’m balls to the wall on this stuff. He was like “I never have patients say that.” And I was like “I’m a mom of two small kids. It’s what moms do–unpleasant things, for the sake of their families.” Honestly, just taking some pills and hoping for the best was making me crazy anyway. I’ll feel better knowing we’re killing some roaches again.

So. What’s life like at the bottom of this cliff? You know, having fallen off the big cliff already, this one isn’t so horrible. It’s actually more like tripping than falling off a cliff. It hurts when you scrape your knee, but the trees around here are still quite lovely. 

A Eulogy for the 108

Posted on by Beth Caldwell

I’ve just experienced the most incredible weekend at the Living Beyond Breast Cancer Ninth Annual Conference for Women Living with Metastatic Breast Cancer. Incredible isn’t a strong enough word. I met the most amazing group of women–sisters living the same life as me, filled with treatments and fear and hope and loss. We laughed so hard, and bravely fought back tears, and hugged so much. So much. As we had to say goodbye at the close of the conference, I found myself hugging the same friends goodbye over and over again, not wanting to let go of them.

When it was over, and I got the airport, I checked in for my flight, and then went into a restroom, where I sat down in a stall and cried my eyes out. All the emotions of the weekend washed over me like a wave, but the biggest feeling came from knowing that I may never see these women again. I love them, and I don’t want them to die, but there is no cure for metastastic breast cancer. And so I know that next year, some of them won’t be back to the conference. And it won’t be because their lives are too full. It will be because their lives were too short.

On Saturday night, a group of us sat in a bar eating our dinner and drinking our whiskey, and we talked about how frustrated–no, how angry we are about what metastatic breast cancer is doing to us, to each other. And someone said “108 of us die every day in this country.” And as we talked, we realized that we felt compelled to express that anger and frustration in a visible and powerful way. We needed to take that energy and do something with it, not someday, but right now.

So we formulated a plan: we would organize a die-in at the conference the following morning. If you’ve never heard of a die-in, you’ve probably heard of a sit-in? Well, a die-in is a bit like that, except instead of sitting, you lay down and pretend to be dead. We decided we would organize 108 of the women attending the conference to lay down in the hallway of the conference facility, in honor of the 108 women who would die that day, and every day, because of this goddamn awful disease.

By the time we came up with this plan, it was pretty late at night. I stayed up even later drafting a eulogy for the 108 of us, as the the song La Vie Boheme from Rent ran through my head.  Meanwhile, the amazing Jennie Grimes spoke to the conference organizers, who said “Wow, great idea!” instead of “Uhhhh…you want to do WHAT?!?!” and helped us figure out the logistics to make it work. LBBC staff: you guys are INCREDIBLE. The support you showed us, and the way you partnered with us to allow us to express ourselves…it was so powerful. I hope you know just how special you are. (And I encourage anyone reading this to consider donating to LBBC, so they can keep supporting metsters like us.)

And so, at 10:45 yesterday morning, we lay on the floor of a hotel in Philadelphia, and held hands with each other, and I wept while my college BFF read the eulogy for us. She said, “Dearly beloved, we are gathered here to say our goodbyes to the 108 Americans who will die of metastatic breast cancer TODAY, and EVERY day, because there is no cure for our disease. They are our friends, our mothers, our daughters, our sisters, and they deserve better. They deserve a cure, and we honor their memory by DEMANDING IT, not someday, but NOW. And now, let’s have a moment of silence for those 108 women and men who are no longer with us.”

This is what we looked like. Sometimes there are just no words.

  

That afternoon, I went to the airport, where I read the news that one of those 108 was Seporah Raizer. Her final tweet was from Simon and Garfunkle’s The Boxer: “I am leaving I am leaving but the fighter still remains.” Her words were so beautiful and so powerful, and now there will be no more of them.

I don’t want to watch any more of us die. I don’t want people to be afraid to love my mets sisters deeply, because of the pain they will feel when we’re gone. I don’t want 108 women to die today, and tomorrow, and every single day, of metastastic breast cancer. I want a cure. I want all of us to live. I want our voices to be heard. I want our words to live on, not just in memory, but because we are still shouting them to the rooftops.

And so this Mets Monday, I am remembering the 108 who died yesterday, and the 108 who will die today, and the 108 who will die tomorrow, and every day, until there is a cure for metastatic breast cancer. And I hope you will remember them too–and not just remember them, but honor them with your actions today. 

If you’re interested in organizing a die-in in your community, I’d be happy to speak with you about what we learned from this experience. Just drop me a line at cultofperfectmotherhood@gmail.com.

On the Road Again

Posted on by Beth Caldwell

My poor husband. I’m ditching him to fly back east again, abandoning him with the kids for another weekend. Oh wait, no I’m not, because my awesome parents agreed to watch the kids all weekend, so The Hubs gets a much needed break too! Nobody pity him. (I asked him what he’s going to do all weekend and he said “Sleep.” Seems like a good plan.)

Where am I going this time? Well, I’m going to be part of Living Beyond Breast Cancer‘s Hear My Voice program. Those of us in the program will serve as peer outreach volunteers, connecting with other women with metastatic breast cancer, and then connecting those women with resources and support. We’ll be doing outreach activities in our community during 2015.

The first step in participating in this program is a training that happens tomorrow, which is why I’m on plane headed toward Philadelphia as you read this. And then on Saturday and Sunday, I’ll be attending LBBC’s Ninth Annual Conference for Women Living with Metastatic Breast Cancer. LBBC’s paying for my whole trip, along with all the other folks in the Hear My Voice program, and I just want to say THANK YOU to them for making this trip possible!

The speaker line-up for the conference looks amazing–in fact, there are so many interesting topics, I’m really excited that my college BFF is coming to the conference too, so we can be in two places at once. (Her birthday is TODAY, so everyone wish her a happy one in the comments, won’t you? Me coming east again is her birthday present, along with a signed copy of I STILL Just Want To Pee Alone.)

The other exciting thing happening during the conference: I’m going to be filmed for a video. No lie, I’m totally freaking out and packing and re-packing clothes and accessories, trying to figure out which of my awesome outfits I should wear. It’s going to be a group of young metsters talking about what life is like with mets, and it’ll appear on LBBC’s website sometime soon.

I’m really excited to be part of LBBC’s programs. There are charities that paint fracking drills pink, and there are charities that pay for metastatic breast cancer research, like Metavivor (a good place to donate funds if you want them to go to research), and there are charities like LBBC that help those of us living with MBC connect to resources. The first type of charity…well, let’s not go there. The second and third types are vitally important. We need research on metastasis and treatments for those of us with metastatic breast cancer, and we also desperately need support while we wait for that cure.

If you live in Philadelphia and would like to meet up with me while I’m there, you’re in luck: I’ll be getting tattooed TONIGHT with some other metsters. The amazing Beth Fairchild, who started up the Mets Monday movement, is a tattoo artist and owns a shop in Fairless Hills called Marc’s Tattooing 215. Beth will be doing tattoos for metsters that evening. My appointment is at 6PM, and I’m a wee bit terrified because I’ve never had a real tattoo before–the only tattoos I have now are the stupid boring dots they give you for radiation. (I wasted my youth. WASTED it.) And I hate those dots, so I’m getting them turned into stars. If you’re in town, come on by and hold my hand and tell me I’m tough, will you?

You know, the thing I’m looking forward to the most is spending time with other metsters. I’ve been warning everyone that I’m gonna hug the shit out of them, and there will almost certainly be jumping up and down and shrieking. And crying, and laughing, and then more hugging. It’s gonna be a fantastic weekend!

Mets Monday: So many metsters, so little time

Posted on by Beth Caldwell

You guys! Today is #MetsMonday again, where those of us in the metster community go berserk with the social media and the hashtagging to try to convince the world to do something about our stupid disease. It’s the brainchild of the genius Beth Fairchild, a fellow metster and gifted tattoo artist. (Do you live in North Carolna and need a tattoo? Check out her shop!) 

The theme for this MetsMonday is “If there is one thing you could tell people about metastatic breast cancer, what would it be?” For me, it’s this: there are too many awesome women living with, and dying of, this disease. Too many. So many, in fact, that I was going to put together a list of blogs by other metsters, so you can check out what they have to say, but Nancy, of Nancy’s Point, already has an awesome list. 

So instead, I’m going to make a request: that you share this post on social media, with the hashtag #dontignorestageiv, and help us spread the word that there are too many of living with, and dying of, metastatic breast cancer. Because, maybe if people knew that a woman dies of metastatic breast cancer in America every 14 minutes, they’d do something to help us.


Fuck You, You Stupid Portacath

Posted on by Beth Caldwell

Sometimes a seemingly small experience can teach you a lot about what having cancer is like, and why it’s so emotionally exhausting. My recent experience with my goddamn portacath is one such experience.

What is a portacath, you ask? Picture this: you need chemo, which is basically horrible poisonous chemicals that make you feel like shit. If the nice folks at your oncology clinic put that stuff directly into your arm, it tends to pool there and hurt. A lot. So, instead, a lot of cancer patients get a medical device called a portacath, or port for short, inserted into their body. It’s basically like an access point that plugs into a tube that is then inserted into a major vein, so that instead of the chemo pooling in your arm, your badass heart immediately pumps that shit all around your body, so it can do its cancer-killing magic. It’s a surgical procedure, having it inserted. Mine is in my right chest, since my cancer was in my left breast and we figured I might have a mastectomy at some point. You can actually see my port under my skin, as well as feel it–it’s a small, hard, lumpy thing.

The way you use the port is this: they take a needle with a tube attached to it, and they stab it into where the port is. I can tell when they’ve got it right because it feels kind of like it does when you plug a cord into the wall, kind of that “thud” or “pop” feeling. The needle they usually use on me is an inch long, but a lot of folks have theirs accessed with one that’s 3/4 of an inch long. And it’s kind of a wide needle. To make it so it doesn’t hurt so much going in, the nice nurses at my oncologist’s office usually numb the site up with some lidocaine first before they stab me.

Now, a port can also be used not just to give you your chemo, or other drugs, or fluids; it can also be used for blood draws. When you’ve got cancer and you need blood draws on the regular, it’s helpful to have a port, because then your doctor’s office can use your port to do blood draws, instead of having to insert an IV in your arm. Your veins can only get jabbed so many times before they’re gonna start to be pretty beat up, and become harder and harder to use. And when, like me, you’ve had a mastectomy, you can’t use that side of your body for your blood draws anymore, leaving just one arm to bear the brunt of pokes. So, a port means your poor arm veins don’t get so beat up over time.

That is, if your port is working properly. Alas, mine is not. I went in for a routine blood draw a couple months back, and although they could push fluid into my vein through my port, when they tried to suck blood back out, nothing came. They yanked on that damn syringe, but nothing would come out. I believe my exact words when this happened were “Oy vey.” Hahaha, just kidding, I said “Motherfucker.”

The protocol when this sort of thing happens is that they pump some stuff in there called TPA. I don’t know what that stands for, but it’s basically stuff that will dissolve a clot if there’s one blocking the end of that tube in your vein. So, the nice nurses at my oncologist’s office (have I talked about them before? Seriously they’re all such nice people, and so insanely competent, seriously, they’re total rock stars) squirted some TPA up in there, and then I waited for the TPA to work. 90 minutes later, they tried to draw blood out again, and again, nothing would come out. So we waited another hour, to give the TPA more time to work, and again, nada.

By this time, it’s like 6PM, so they said, “Come back tomorrow and we’ll try the TPA again.” So we did. Again, nothing. So, my oncologist says, “Well crap. I guess I’ll send you for a dye study.” Here’s how a dye study works: they put you in an xray room, and they inject some dye in you that an xray machine can see, and then they see where the dye goes. If it goes through the tube like it’s supposed to, and the tube doesn’t show any kinks, then you know your port hasn’t gotten twisted or otherwise messed up. If it shows a kink in the tube or the dye doesn’t go where it’s supposed to, well, you know it’s time for a new port.

So, last week, on my cancerversary (March 26–the day I got my biopsy results), I went in for my dye study, which wasn’t at my oncologist’s office–it was in the main part of the hospital, where my oncologist works. Now, the nurse who attempted to access my port was a very nice, friendly woman. But first off, she was going to jab that needle in there without lidocaine–I had to ask for it first. And then, when she stabbed it in there, she missed. So when they pushed in the flushy stuff they use to flush out the line, it burned. A lot. That’s how you know the nurse has missed the port–if it’s in there right, it makes that thud feeling, and instead of a burning sensation, you taste the weird metallic antiseptic flavored stuff they’ve just pumped in your vein. If they missed, it fucking hurts, and you taste nothing.

4 more pokes later, most of those after the lidocaine had worn off, and she still didn’t have the needle in my port properly. We figured this out because the xray machine (remember how they were using one to see if the tube was kinked?) showed the needle was in the wrong spot. Also the burning.

By this time, the radiologist who was going to look at where the dye went was in the room, along with a guy who operates the xray machine, and another nurse. His name is Walter and he’s my new favorite person. Walter, if you’re reading this, please know you have my undying gratitude. Walter gave me more lidocaine, poked me one more time, and pushed in the flush–and I tasted it. VICTORY!

Except that victory was short lived, because when Walter pushed in the dye and we looked at it on the xray, everything looked fine. But there was still no blood coming back out. This time, I didn’t say motherfucker. Not out loud, anyway.

So, we tried yet another dose of TPA. That makes 3, for those of you keeping track at home. And I sat for 2 hours. And it still wouldn’t give a blood return. Walter was extremely apologetic, but I told him it’s certainly not his fault. We talked about next steps–he said “Well, it flushes just fine, so you could put stuff in there, but that’s gotta be frustrating not to be able to use it for blood tests.” You’re telling me, Walter.

After the test, I bumped into my oncologist in the hallway. He’s mulling over our next steps. Maybe we put in a new port, or maybe not. It is, after all, surgery, which comes with its own risks. 

When I got home, I had a big streak of dried blood over where the port sticks happened. After I wiped the blood off, there were 3 very visible poke spots, all at least a centimeter apart. Unsurprisingly, the whole area was sore to the touch, like it had been bruised. And the next day, the area did look bruised.

I mean, in the grand scheme of things, spending all that time at the hospital, for naught, isn’t a huge deal. I don’t have a job anymore, and the kids are at school/daycare, so it’s not like I’m having to leave work or find a babysitter or whatever to go to these appointments. But, on the other hand, it adds up psychologically. Especially on one’s cancerversary. There’s pain, for starters, but more than that, time spent in the hospital is a reminder that I’m living with a terminal illness. It’s in my face that I can’t just be like “My chemo was last spring, I don’t need this thing anymore” and have my port removed.

Don’t get me wrong, I’m grateful for Walter and my oncologist and all the other amazing medical personnel I meet who are helping to keep me alive, despite everything my stupid body is doing to kill me. To kill us.

And yet.

And yet, this is hard. Really, indescribably hard. And I wish I didn’t need all these wonderful people.

And I wish my fucking port would just fucking work.

More or Less

Posted on by Beth Caldwell

Lately I’ve been reading a lot of stuff by moms that makes me feel…uncomfortable. I keep wondering why I feel this way. And I realized that it’s because I need a refresher on one of the key concepts that helps free us all from The Cult.

Did you know even I need a refresher now and then? It’s true. When you have to live surrounded by people who have drunk the kool aid, it’s easy to think “Maybe I’m the one who’s crazy.” But no, it’s not me.

Let me back up a minute. What is it I’ve been reading that bothered me? I’ve been branching outside of my usual circle of awesome bloggers I follow–the ladies from The Book, and some other bloggers I really admire. So, what I’ve been coming across lately is a lot of stuff about feeling like you’re not doing enough as a mom. That the kids aren’t perfect; that the house isn’t perfect; that the family photos aren’t perfect. 

I keep reading these kinds of things and thinking “I do less and less all the time as a mom. Fatigue sets in by 3PM every day. I can’t even get up with them some mornings because I’m too tired. Am I even a mom anymore? I don’t have a breast anymore. My hair is still so short, it looks like a guy’s. Am I even a woman anymore?” That shit hurts. Those feelings are right under the surface, because as treatment goes on and we add new drugs to my cocktail, the side effects get worse.

So I would quickly click away from their words. And I would feel more and more isolated. And more and more like a failure. 

Until one night, I thought, “It’s not you. It’s them.”

It seems to be deeply embedded in the American psyche to be constantly striving for more. Bigger house, higher test scores, more trophies. Nothing is good enough. Nobody is doing good enough, not when there’s room to do better. And we lie to ourselves and say that more is possible, even when it’s clearly not. Harvard is hovering off in the distances if on,y you sign Little Sally up for enough sports teams and community service experiences and foreign language classes.

Well, I don’t want that kind of more. I don’t want a life spent running around like a chicken with my head cut off. I don’t see how that life would make me happy.

I’d settle for the more I had before cancer.  More energy. More years to come. More smiles. But I can’t have even that kind of more. I have less now.

Does that make me less of a good mom? Does my less make you say “She’s a shitty parent”? Are you an asshole? No, of course not. It makes you say “She’s doing the best she can, and her kids are turning out fine.” You say “Of course you’re a woman, look at how feminine Sinead O’Connor was with that bald head. And that chick from the first Star Trek movie in the 70’s, wow she was hot.” 

I think the real problem is this: we look at our lives, and we say, “I’m unhappy. Something must be wrong with me. Why can’t I seem to make this work?” But it’s not us. It’s the pressures the world is putting on us. It’s the feeling like you’re failing, but the only thing you’re failing at is meeting a completely stupid expectation that won’t make you happy even if you meet it. It’s that we’re not looking at our lives and deciding “These are the things that make me happy–what do I do to achieve them?” Instead, we’re saying “I think I’m supposed to do these things, because I see others doing them, and I can’t seems to do them. I am a failure.”

No. No more. Today is the day I stop looking at other families and judging my parenting by their actions. Instead, I will look at what is important to me, and what my values are, and what my limitations are, and choose my actions accordingly. If I’m too tired to make dinner, and too tired to fold clothes, I will remind myself that I value cuddles with my kids over a fresh made meal and unwrinkled shirts. If five nights a week practice doesn’t work for our family’s schedule, we’ll pick an activity that does work for us. If other families do it differently, it doesn’t matter. They do what works for them, and we’ll do what works for us, and it’s all good. 

I won’t keep aiming for more. I will be happy with less, because my less will consist of what is important.

Extreme Couponing: Copay Edition

Posted on by Beth Caldwell

Have you guys ever watched that show Extreme Couponing? It shows people who are so good at working the coupon system that they are able to go to the store and buy like 40 bottles of mustard, 3 cases of toilet paper, and 50 lbs. of ground beef for like $1.25. I’m fascinated by these folks, because dude, I love a bargain, and also, I’m impressed when people know how to work a system to their advantage. It’s the lawyer in me, really. I mean, finding rules that allow us to get what we want is the main thing we lawyers do. Working the system is our skill set, and I admire anyone who also has that skill set.

I want you to keep that idea of extreme couponing and working a system in the back of your head as you read this long explainer of my health insurance’s drug coverage.

I think I’ve talked to you guys already about how my old insurance wouldn’t approve a PET scan for me, and how my oncologist’s office was going to be out-of-network starting in 2015, right? Well, now I’m on a new insurance plan, and they don’t even require preauthorization for PET scans, so now I can just have them when I need them, and my oncologist is in network and everything is sunshine and roses and I was singing the praises of my insurance.

Then I got my first insurance statement of the year, and discovered that the copay for the denosumab shot I get every month is $761.29. And for the fulvestrant shot I just started on, it’s $780.82. You read that right. Every month, my drug copays for just those two shots are over $1500, so, over 12 months, that’s over $18,000. For just two of the drugs I’m on. When I realized this, I emailed my doctor, because we’ve been having a conversation about a new drug he wants to start me on called palbociclib, but he’s been worried my copay will be insane. Neither of us realized the copay for the drugs I was already on was going to be just as insane. In the email I said, “That’s OK, I’m sure the kids will love living in our minivan.” I believe his reply was “WTF.”

Now, the way my insurance plan works is like this: you pay your premiums, and you pay copays for things, like, the copay for my PET scan was about $300, and the copay for the denosumab is $761. But once you hit the catastrophic maximum (also called an out-of-pocket maximum) for the year, they no longer charge you a copay for most things. For drugs you buy at your pharmacy, you still pay copays, and you probably still pay that $10-35 copay for doctor appointments. But for things like PET scans or radiation therapy, you’re done having to pay for them once you hit that catastrophic max.

Now, most people don’t hit their max, because most people aren’t having the quantity of expensive treatments I am. Until I got cancer, I wasn’t even sure what our catastrophic max was (it’s $6000 under our current plan for in-network providers) because we’d never even gotten close to it. For the rest of my life, though, we’ll easily hit that max every year, so it’s something I considered when shopping for an insurance plan. And before cancer, I also didn’t know what counted towards that max, or what would still cost me a copay after we hit the max. So, when I got that insurance statement saying “These drugs are gonna cost you $1500 a month” it’s fair to say that I freaked the fuck out.

Then I called my insurance company. I explained the situation and asked if I’d continue to have these copays once I hit my catastrophic max. And their answer was “Nope. As long as you’re getting that drug at your doctor’s office, you won’t have a copay anymore once you hit your max.” I was so relieved, I wanted to hug the nice customer service rep through the phone.

I emailed my oncologist and said “Stand down the panic, after I hit my max, I won’t have these copays anymore.” But by then, he’d already sounded the alarm around his clinic and his pharmacy guy called me to discuss the situation, and also what to do about the palbociclib. The pharmacy guy explained that for a lot of these drugs, there’s a coupon system (I told you we’d get back to coupons!) to help cover the costs of the copays.

See, it works like this: the drug companies realize that the copays for their fancy new name-brand, not-available-as-generic drugs are going to be sky-high, because the drugs are so expensive. That denosumab shot? My oncologist’s office bills my insurance over $6000 a shot. That’s why the copay is so high, it’s an insanely expensive drug. Now, the drug company wants me on that drug, because me on the drug makes them money, and me NOT on the drug means they make $0. So, the drug company is willing to eat the cost of my copay if it means I’ll be on the drug rather than not being on the drug, because they’re making so much money off the drug that losing the $760 of my copay only makes a tiny dent in their bottom line. Making $5200 off the drug instead of $6000 is still better than making $0, right?

So, the drug companies have coupons you can get to drop you copay to a much lower level. According to the nice pharmacy guy, for denosumab, the coupon would drop the copay to $25. You just print it off their website, and the doctor’s office handles the paperwork, and boom, your copay goes from $780 to $25. Some of them even have a “try it free” coupon, so your first dose is free.

Now, for the shots I get at my doctor’s office, I mean, it doesn’t really matter what the copay is, because once I hit my catastrophic max, it’ll be free to me anyway, and I was going to hit that max whether I had these copays or not. But here’s where it gets tricky: for drugs you buy at a pharmacy, you continue to have to pay a copay. And that new drug my doctor wants me to try, palbociclib? It’s a pill, not a shot. Which means I’ll need to buy it from a pharmacy, and the copay won’t fall under my catastrophic max. Palbociclib costs about $10,000 a month. Cue the terror.

Remember, though, that I’m a lawyer, and working a system is a skill set of mine. So I went on the drug manufacturer’s website, and low and behold, there’s a coupon on there that will drop my copay to $10 a month. And they also have a “try it free” coupon. BAM. That’s some pretty extreme couponing, don’t you think?

But here’s the real problem with this: I’m a lawyer, and I’m good at working a system, and I don’t work anymore, which means I have time to do some extreme copay couponing. Imagine if I didn’t have time for this. Imagine if I didn’t have the skill to figure out how to work the system. Imagine if my doctor didn’t have a nice pharmacy guy to figure all this stuff out for me. Imagine if I didn’t have good insurance with a fairly reasonable catastrophic max. I might forgo lifesaving drugs, because of money. I might die even sooner, because of money. Let that sink in for a minute.

Our system of healthcare financing is a disaster. And what makes me crazy is that systems are set up by people. They aren’t inevitable–we, as a society, make choices about how to pay for health care. Other societies have made different choices, based on different values, with very different outcomes. We don’t have to live in a world where people die because they can’t afford health care. We have chosen this system, and we can unchoose it. Or, we can continue to force patients and doctors to make health care choices based on money instead of science, and I can keep doing my extreme couponing to get the care I need.