Month: April 2015

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!

Cocktails with the Cult: Bourbon Rocks

Posted on by Beth Caldwell

Recently I’ve discovered bourbon. I was always a vodka girl, but I feel like a lot of vodka drinks come with sugary mixers, like fruit juice or sweet liquors–chambord, Bailey’s, that sort of thing. And I find since I started on my most recent cancer drugs, when I have a sugary boozey drink, it makes me feel icky, like, burpy and queasy. Vodka alone is alright, I guess, but it feels a little odd drinking a tumbler of it. I’m not Roger Sterling, much as I adore him.

So, I’ve started drinking bourbon. I’m officially living like a 78 year old.

I drink it on the rocks, because dude, I’ve got cancer, and I’m on a zillion drugs. Adding a little water with my booze isn’t a bad idea. Plus, you get the nice buzz going from drinking more bourbon-y bourbon at the start, and finish with a less bourbon-y, more water-y drink at the end, which seems to help avoid a hangover for me.

Surprisingly, it didn’t take long for me to develop a taste for bourbon. Good bouron, mind you. I’m too old to be drinking crap. I like to buy a craft bourbon if I can. At the LBBC conference, I drank a bourbon called Hooker’s House. Because, hookers. Recently I drank some Pendleton bourbon, and that was lovely too. 

Thus, I bring you: Bourbon Rocks.

Pour some good bourbon in a tumbler. Careful, it’s strong. OK, a little more. Add ice. I like bigger cubes, they melt slower, so you can nurse your drink a little longer.

Cheers, y’all! Share your favorite bourbon in the comments!

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. 

Telling the Truth: I Hate Cleaning

Posted on by Beth Caldwell

It’s time for some deprogramming, y’all! Let’s go back to the beginning and remind ourselves of the four ideals that the Cult of Perfect Motherhood forces us to try to achieve: perfect femininity, never putting yourself first, freaking out over the latest parenting research, and domesticity. It’s the last one of those that I want to talk about today.

My house is a complete and total disaster area most of the time. I married a slob–I knew it when we started dating and I saw his bedroom in his apartment, where his stuff was literally in piles everywhere and there was only a path to his bed. He’s toned it down quite considerably since then, but the truth is, he doesn’t see the mess, and if he does see it, he usually doesn’t care much about it. Is it my favorite thing about him? No, but it’s sure as hell not a deal breaker. He tells me I’m hot even after I’ve lost a boob, and he’s a great kisser. Guy’s a keeper.

That said, the slob tendencies that run in our family and my level of fatigue these days mean our house is, as I said, a disaster area most of the time.

Before cancer, I used to clean up quite a bit before people came over. Not for everyone–even before cancer, I had friends for whom I didn’t clean–but for many guests, I’d put everything away, EVERYTHING, and sweep and vacuum, and clean behind the toilets, and maybe even mop. Now? I’m tired. A lot. I don’t have the energy for all that, and frankly, after a long day at work, neither does The Hubs. So, I pick up the kids’ dirty underwear from the living room floor (not kidding, there’s two pairs of it there as I type this) and clear the toys off the couches so there’s somewhere for everyone to sit. That’s basically it.

And you know what? Not one of my friends has given a shit. Not one of them has said “Gee, you’ve really let this place go, haven’t you?” They just plop down on the couch and start chatting.

Here’s the thing: I think we’re all afraid to let down our guard about this whole domesticity thing, and tell the truth: some of us like cleaning and feel a sense of accomplishment from it, but some (many of us?) don’t like it. It’s not where we find our joy. And that’s OK. It doesn’t make us bad mothers that we’re not finding our joy in domestic tasks. Let me say that again: it doesn’t make us bad mothers that we don’t like cleaning.

I’ve said it before but I’ll say it again: a key way to escape from the Cult and its pressures and expectations is to be honest about how you feel about them. If domesticity isn’t your thing, just say that. If you give no fucks about being feminine, tell your friends. There’s so much fear among women about telling the truth about our lives, for fear we’ll be judged, and shunned. But I’m telling you now: the truth is liberating, and I think you’ll find that your friends will express relief when you speak your truth, and say, “Oh thank goodness, I’m so glad I’m not the only one.”

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.