In Which I Natter on About Cancer & Politics

 So. It's been a few years since I wrote anything here. This weekend is 7 years since a woman who sounded like she had one foot in the grave and another on a banana peel (seriously she sounded very ancient) told me I had cancer and I sat in a small conference room at work. It was a phone call, which some have expressed shock and outrage over - such news, OVER THE PHONE? - but after being told several days earlier that the radiologist was like, 95% sure it was cancer I am glad they told me ASAP instead of making me wait. That evening someone told me that for the next while, everyone was only going to want to talk about/ask me about having cancer, but always remember that is the least interesting thing about me. 

And she was right. For a long time, I would get asked "how are you?," often with a slight head tilt that people do when they're being Very Concerned. Hell that was happening over a year later. 

At first I embraced a sort of activism and was very involved in breast cancer groups online. After awhile, though, I needed a break from both. Groups like that can be great, especially when you need to find some sort of community that remotely understands what you're going through. They can also wear you down. I think I tuned out when pseudoscience started popping up and mods allowed it, among many other reasons. It can also be very triggering when someone posts photos of surgical sites and they just...come up in your feed. There also came to be an undercurrent of toxic positivity in some of them.

One day, on a post where someone was talking about how shitty things were for her in that moment, someone rolled up and essentially said she should be grateful just to be alive. I replied that one can be grateful and also upset at the changes that happen as a result of cancer, the after effects, etc. Being grateful and upset are not mutually exclusive things. Unfortunately, the idea of being grateful, full stop, kinda pervaded the group along with 'what is this trying to teach me? I will say this now, with my full chest:

NOT EVERYTHING HAS TO BE A LESSON. SOMETIMES SHITTY THINGS JUST HAPPEN AND WE HAVE TO DEAL WITH IT.

Not to mention how messed up it is to assume that everyone has to view their experience exactly as you do. I mean, yikes. Don't tell people how to feel.

Which is another sort of aspect to all this - how people feel. When I got cancer, I had an incredible group of folks rally around and ask me for a wish list link, put together a meal delivery thing where we were fed by friends for almost 2 weeks, whether home cooked or restaurant and it was the most amazing thing. It frankly ruined me for future medical issues where a longer recovery was required, to be honest. Though one thing I did learn from all this is, when you're going through a hard time and people ask 'what do you need?' or "let me know if you need anything," be direct in those needs. Remember who said that you could call on them for assistance and do so. It is not easy because like the meme says, it's super hard to ask for help.

Having cancer taught me a lot about the people I know and about friendships. Many significant events over the last 5 years have taught me even more (events include, in no particular order: the term of the 45th president/all the harm his administration caused, COVID, Black Lives Matter, overturning Roe v Wade, rise in bigotry against LGBTQ+ folks, and there are many more.) Some things I learned about folks were not great and I ceased to associate with them as these are issues that veer into morality & decency. Another reason I tired of cancer groups was the 'no politics' discussion. Well...I hate to break it to you, but unless you're a straight, white, able-bodied man in this country, your existence is political because everyone else has to have carve outs in federal law to recognize them. (They're easy to find - many are in the constitution.) 

Though my risk of one is very low, I do worry about a recurrence of cancer. Going through all of that right now would be horrific for all the usual reasons but also how will all the fuckery from 47's regime impact someone's care? We already know that many clinical trials were cancelled due to a sweeping cut in funding because the elongated muskrat and his band of shitty tech dudes decided it fell under "wasteful spending." I believe funding was ordered to have been restored but haven't had a chance to follow up to see if they actually did it.

Some of the anti-trans legislation that's been written in the last few years is also worrisome to me because it is so poorly written that, in an instance of an older one in AZ, I could be singled out for not looking feminine enough - I have no boobs, don't wear make up, and usually dress in a pretty gender neutral way. A law in TX seeks to criminalize gender-affirming care (for kids and adults) and is worded in such a way it's easy to see how it could be twisted to make it hard to get a needed mastectomy. Since the current regime took over, I have noticed being stared at a bit more in public, even when I'm with my husband and have mentally rehearsed what I'll say if I'm ever confronted. Any asshole behaving in this manner will also probably get to see my scars because I'm so far past the point of a stranger seeing my chest it's not even funny. 

At my oncology check up in February, the doctor & PA were brightly positive that I was almost at the 10 year mark, which is significant in that I think at that point, I can finally stop taking the daily pill that shuts off estrogen production. (My ovaries are long gone but - fun fact, estrogen is produced elsewhere!) I look forward to not needing it but the risk of recurrence will remain low, never gone entirely. It doesn't help that I'm an anxious person by nature that could probably use medication for it, but I digress. 

I didn't expect to be dealing with the aftermath of cancer - it IS the gift that keeps on giving, after all - and fighting fascism, but here we are. A bunch of people decided that a petty fascist dude who hates everyone but rich white guys was a better choice than an experienced woman. Men really will burn the country rather than let a woman sit in the White House. 

Rhaenys Targaryen Velarion in season 1 of House of the Dragon

The last few years have been so hard for many reasons, including that in the span of 2 years we went from 3 cats to one and I've had some weird health things (not serious, but annoying). Recently, in December, we adopted two kittens who have brought much joy as well as some consternation because hey, kittens at a certain age are basically tiny velociraptors. The relationship between them & Princess Biscuits is progressing slowly but surely towards one of at least mutual tolerance. We have friends who are like-minded and lovely people, and things are looking up in many ways compared to previously. Maybe I'll even write here more often, who knows. We'll see if the Ides of March has anything in store.

P.S: Preview mode showed me this may not display well on a smartphone. I don't see a way to fix this. Sorry!

Is this how it's supposed to work?!?

Holy shit, y'all. 

This fall, I sought out a new lymphedema therapist. The former one was continually stumped by the swelling in my hand that started in late 2019, and a refrain near the end of my slate of visits was that we'd "tried everything." I felt stuck, and frankly like sometimes she wasn't actually listening to me.

Last Tuesday, I saw my new lymphedema therapist for the first time and she told me how she does things: goes over a patient's file to figure out what they need, then puts together a wish list and runs it past her contacts plus the patient's insurance. I was thoroughly evaluated, learned that some of my issues are really not my fault but common for lymphedema patients and, to get things rolling on treatment, she wrapped my hand up really well to try & force the swelling down. She told me I might get a call from someone to discuss a machine called a Flexi-touch.. (It's basically an upgrade from the pneumatic pump I use every night to move the lymph fluid in my hand/arm/trunk.) She also emailed me on Wednesday to say my insurance covers me for custom compression garments, which is great since it'll be a way better fit for my needs.

Getting my arm pumped at the old therapist 11/2020. 
(Doesn't it look fun? Aren't you jealous? /s)

Well, last Friday morning, someone from Tactile Medical called to say he had info from my therapist and did I have some time today for him to come out? So, he came out to the house, met me, took measurements, told me I had good insurance, and said it could be up to 7 business days before I heard anything about approval. He had someone send me a form about financial assistance, since at the start of the year I would end up with a total due of quite a lot. (I qualified, so now I will only owe my deductible, which is manageable. And I hear they take installments.) Tuesday I woke up to a text, an email, and voice mail all saying the system was approved by insurance. While talking with a rep to finalize details, he offered to set an appointment for someone to come to the house & help us figure out how the new system works - this was after saying it comes with a DVD & an instruction manual. I asked if we could use what was available & call for help if needed and he said absolutely and let me send you a link to our instructional videos. For comparison, when I got my basic pump in early 2019, I had to: call a company, ask for a specific person, then get them to email me information, contact my oncologist, fill out a financial form, I think I had to talk to insurance, and then I ended up being able to get it.

When I had an appointment today, I told my therapist that I was in a weird headspace because this happened so fast and I didn't have to argue or make a case for something, I didn't have to take paper to anyone to ask for a signature, etc. I could hear the smile in her voice when she said "that's how it's supposed to work." I even learned today that custom sleeves do not mean I'll be wearing what I call Institutional Beige - there's colors! And one company even does patterns, so in theory, I could have a dark grey hounds tooth sleeve. Along with this heady feeling of "holy shit is this how it's supposed to work?" is a companion feeling of wariness - like, ok, what's the catch? Will I have to take up my twice yearly fight to get insurance to cover my sleeves? Or will my therapist's contact actually submit the claim in a manner that is pleasing to the company? So far, I'm hoping for the best.

**

Side note, yeah. It's been awhile since I posted a blog. I thought of some things to say earlier this year, but didn't hit publish for a variety of reasons. Anyway, mask up, get your shots, wash your hands, don't touch your face.

Flat AF

Last April when I felt like I was on a runaway train after getting diagnosed, I was given some options as far as after the mastectomy: reconstruction, no reconstruction, delayed reconstruction. I'll level with you - as someone who developed breasts a lot earlier than some of my classmates, my relationship with my boobs was always complicated. I got unwanted attention from basically 3rd or 4th grade on, almost always tried to wear looser clothing to try and hide them, then got badgered by my mom with "why don't you wear things that fit?" At times I even wondered what it would be like to not have them...or to have smaller ones. ANYWAY, fast forward a lot and within the last few, years I'd finally grown more comfortable with them. The idea of them going away was traumatizing in itself and thinking about waking up with nothing there was worse. My breast surgeon suggested no recon, like her or going direct to implants. The plastic surgeon suggested delayed recon because radiation could fuck things up. I went with delayed and had what's known as a skin sparing mastectomy. I think I've described elsewhere that it basically is like someone opened up the skin on my breasts and scooped everything out. I don't care for it. I think it was one day last July, I was getting dressed to go visit a friend and realized that when I looked in the mirror, I didn't mind what I saw. I liked the image of me with no breasts, and at that point started thinking that maybe being flat would be ok.

Then the research started. I found amazing photos of flat women online and saw that hey, this can be normal! And beautiful, sexy, cool, confident...all of it. Then I started looking into recon. Breast implants have a shelf life of about 10-15 years. Like, literally, they should be replaced about that often. I ruled that out on that basis, deciding if I wanted to look into reconstruction w/ my own tissue. There's one called DIEP reconstruction - a person's own tissue is used from the abdominal area and transferred up top to create new breasts. As a fat girl, I thought "holy shit, this is my time!!" Then I looked into it. It's many hours of mircosurgery, there's an incision that runs from hip to hip, hospital stay, chance of tissue death, so no thank you. (I had a lot of necrosis with the nipple grafting and it was very traumatic. Yeah I don't think I've written about that yet.) Other flap type recons were out because they involve moving muscle from either your abs or shoulder around to the front & then placing implants. At a follow up appointment with my surgeon, I'll call her Dr. O, I told her I decided to go flat. She asked why, I explained, she was cool with it. Said she'd write the script for things like mastectomy bras, etc.

Collage with glorious flatness fr. Flat Retreat page on FB

In the meantime, I joined a couple of FB groups for women who were flat after breast cancer and I found a group of some of the most fantastic women. I've learned so much about the breast cancer community and that quite a lot of women who ask for flat results - flat closure reconstruction - are ignored because doctors aren't respecting their choice. (Damn, that sounds familiar...) One such lady started Not Putting on a Shirt to help advocate for this and she began keeping a list updated with names of surgeons from around the country that gave good flat results. I contacted her for a name & got the list as well as a recommendation.

In June, I had a follow up with Dr. O. Which seemed weird because why do I have to keep seeing her? I see an oncologist several times a year who does the same kind of examination. Anyway, I'd been having a trying week and unfortunately I got emotional in the office. I say it was unfortunate because when I then talked about wanting to be flat, she didn't take me seriously. She launched into a crazy tirade about it that included reasons such as: it's really hard to get insurance to pay for revision, we could have just done this in the first place, you're so young, "once we do it, if you change your mind, that skin is gone," and "you'll be pear shaped." I told her I'd done research, stated my reasons, and mentioned the groups I'd found and she cut me off saying "I know about all the groups." And took my hand saying gently "don't let someone else's story be your own." Which is basically what she was doing? She brightened considerably about the surgery when I mentioned I thought a plastic surgeon had to do it & then said "oh if that's what you want..." then told me I should give it more time. I'd had a year!! I realized when I left that appointment and cried that I am not going back to her. If a friend told me about a doctor treating them that way, I would tell them to GTFO & find another doctor. The great part of this was me sharing with Flatties Unite (one of the groups) and joking about how she thought the group was a bad influence.

Melissa Jansen, (I Don't Need Two) with the meme magic. 

I did end up giving it more time because of how scheduling worked out. It also turns out that if someone has radiation, one should wait about a year before trying anything so the tissues have a chance to heal. After seeing Dr. Clark at Ironwood, I felt so much better about this decision! She referred me over to Dr. Berardi, a plastic surgeon, to answer some more questions and we're going forward with surgery this December. I am nervous because it's surgery, but excited because I'll get rid of this excess skin. She thinks it could possibly help with my lymphedema as well, since getting rid of the skin & scar tissue would make it easier for the lymph to move.

Seeing these two new doctors has given me a lot of feels. Specifically a lot of "this is so different from last time" and "oh god, I wish I'd found them first" feels which has been so hard. I can't let myself fall into that hole, though. Gotta keep moving forward.

A note - there's a lot from last year that I'm still kinda working through in my head and I intend to talk about it. But haven't gotten around to it yet. I've said it before that I intended to talk about things in a linear fashion, but that's clearly not happening and we'll all have to deal with it. 

It's Just Hair

"It's just hair" was something I finally managed to convince myself the first time I truly went short on purpose. There were several other times in the prior to that occasion when I had short hair, but it wasn't because I said "here make my hair look like this" it was because of accidents - and once a stylist was having a super bad day and I wasn't going to tell the angry lady with scissors to please calm down. That first triumphant success started a tradition of cutting my hair in summer, then letting it grow out. Until last year.

Last year, after being diagnosed, I didn't know what to do about a whole lot of things. I didn't know if I'd need chemo. If I did, I knew for sure that I had one friend who was willing to shave her head with me and I was tentatively planning a Furiosa cosplay. But I had no idea. My hair was just past shoulder length at time of surgery and after a few days, I wish I had cut it because it got gross. I couldn't shower for a week. Dry shampoo was too little, too late by the time we tried it (and it didn't help that Jason and I had no fucking clue what we were doing). Also I couldn't lift my arms above my head yet so it was all him.

Anyway, I think sometime in June, maybe July I got a call that one test had come back with good results, so they were sending it for another one, an Oncotype test. That one tests many things and then spits out a score that determines, along with other factors, if you need chemotherapy. More time passed and I finally heard back - the score was good! BUT...a medical oncologist still needed to determine whether it was good enough to not need chemo. I'll spare you all that drama, but the 2nd opinion trusted the science - so much so that she invited a person who works for the testing company to an appointment so they could go over charts, graphs, and other related information to show us why she trusted the science. Then came radiation and it was just awful. by the time it was done, it was no longer my "season" so to speak.

In February of this year, I got a trim, just a few inches. I didn't know what I wanted yet. Then came Avengers: Endgame. Seriously, look at Captain Marvel's hair! It's amazing! #Hairspiration for days!

Brie Larson as Captain Marvel. My #hairspiration. 

Look at her! So badass! Ready to do whatever
it takes to bring down Thanos & his army.

 I finally knew what I wanted, but I also knew that the last time I had a similar cut, my hair went into wild, curly waves and I had no idea what to do with it. So I booked an appointment at Arcane Hair Parlour with Katie, on the suggestion of a friend. This way, I'd get the cut I wanted or as close to it as possible, and someone to teach me what to do with it. On appointment day, she'd also been looking at photos, and we figured out exactly what to take from the look & apply it to my head. And it worked out pretty great...

Day of cut, finished mostly straight.

Over a month later, on my own, I decided to use a box 'o dye with a color called Midnight Iris. I'd always let myself be talked out of super dark shades. But I kinda wanted some blue, and I decided if not now, when? So I went for it. And to my pleasant delight, it also worked out great. (Otherwise, I'd have had to contact Katie, fess up to having used the dye I admitted to having, and then spend a shit ton of money having her fix my mistake.)

I feel a little goofy writing about my hair, but, as odd as it may sound to some of you, this was a big deal. Cutting my hair felt like reclaiming another part of myself from this bullshit cancer "journey" I've been on for over a year. Yeah, taking care of it is a little more work, but it's worth it. Not only because of the reclaiming bit, but it also feels really great. I'm trying salon products for the first time in my life and, uh, yeah. They're totally worth it.

"It's just hair," doesn't have quite the same flippancy to it anymore, because while it is 'just hair' and will grow back, to me, last summer, it was the difference between chemo or no chemo. The start of some horrifying process to kill the cancer or getting to skip it. I got to skip it. And now, I fucking love my hair.

Me looking a bit sassy with my midnight iris locks.

Reflections

As is stereotypical for this time of year, I've been doing some thinking. It started around Thanksgiving. We're not usually the sort to spend time on Thanksgiving discussing what we're thankful for, as we try to do that all the time, but this year was different. We ended up discussing how we're both thankful that I'm still around. Along with that, was gratitude I have that he found the lump. More gratitude to the medical team I've seen and continue to see, along with the friends that have helped along the way. 

Right now, I'm cancer-free.  Every night, I take a pill that acts to suppress estrogen. I'm not sure how long I will be taking it, I've heard up to 5 years, possibly longer. Each month I get a shot of another hormone suppressant and blood work gets done to check for tumor markers and it's been normal so far. I expect it to stay that way, too. 

I've had some bad days along with the good. But, this year I've felt more festive than I have in a couple years. Maybe it's some side effect of surviving a deadly disease, I dunno. But I sent cards this year for the first time in forever - just a few, but still. I made sure that for my birthday we went out & did something fantastic, rather than my usual quiet, movies and dinner thing. (And we did, the Arizona Museum of Natural History in Mesa, AZ is awesome!!) 

 

A few things come to mind recently that I did this year and am really happy about, one of which was reading at Amarise's wedding - which I agreed to do with enthusiasm & it was only on the morning of that it dawned on me that I'd agreed to public speaking. Not something I'd normally consider. But it went so well and I remain honored to have been a small part of such a gorgeous & touching ceremony. 

  

 I did a cosplay this year that I've wanted to do for a long time, but was always too shy to do it - Death from Neil Gaiman's Sandman series. Then I took that outfit & gave it a twist a couple weeks later at a con to great reactions. I still have a lot of work to do as far as eye make up, but I'm very pleased with it so far. (And shout out to the people who helped me with eyeliner! Woot!)

 

The group of friends I do panels with for Phoenix con each year has gained a smidge of notoriety in local geek circles and was invited to two other conventions this year, and another local one in 2019. 

There's other parts of my recovery journey - god that sounds so cliche - that I mean to post. Two drafts are started. I was trying to be chronological, but it's just not working out and some stuff still feels too raw to write about. I've changed this year, at least, I feel like have. I have even less patience for bullshit and/or drama than I used to. I've begun to look critically at things to determine if they still bring me a sense of happiness or joy and have ended up cutting out a few things as a result. Those cuts were painful, but necessary, and I am happier for them. Which was the point all along. 

The new year will bring new challenges as I enter what I call the maintenance phase. I also want to begin talks with a surgeon to make my chest totally flat. Come what may, I feel I've weathered the scariest part so far and have faith I'll make it through what comes next. 

I hope that everyone reading this has a good holiday season, that you get to spend time with people who care about you, and that you get to have some tasty food. Merry Christmas & happy holidays to you.

 

With a Little Help From My Friends

On the day of surgery, we had to be at the surgery center at 5 am for check in. 5 AM. I never get up that early. It was brutal. My brother & sister both wanted to be there, so on the way once we were on site, we took photos to help them figure out where to go once they arrived. Up to that morning, I thought I was ok and at peace with what was happening to me, but, when the pre-op nurse asked me to rattle off why I was there, my voice caught and I started to cry as I said "bilateral mastectomy with sentinal lymph node biopsy." She held my hand & told me it was ok. My breast surgeon & plastic surgeon arrived and they seemed weirdly hyped/animated. Is this a surgeon thing? Does it make them excited to go do their thing? I was asked that morning by someone if there would be reconstruction, I said no. Then an OR nurse came out & asked if there should be spacers - again, I said no. And at that point, was even more nervous because what the fuck people, I told you all of this. One of the last things I recall as I was put under was Dr. O'Neill (my breast surgeon) taking charge of things by way of having someone move & taking over a task then shushing the OR nurse who had been chattering loudly away.

Then later, I woke up. One of the first things I remember is Dr. O'Neill sitting at my bedside leaning on the rail, remarking on how drugged up I was but that I had come through the surgery great, minimal blood loss. And that there had been a 1 cm tumor in the lymph node, so it was also removed. That...was not cool to hear. After she left, my brother & Jason came back for awhile. Then my sister swapped places with my brother and she sat with me while Jason went to get my prescriptions & the car while a nurse helped me to the bathroom to well, use it, as well as get dressed. I won't go into a lot of detail on that, but I wore Wonder Woman undies that day & also made the mistake of looking at the bed where I'd been laying after coming back to my little recovery area because there was blood (that my sister quickly covered with a sheet).

We had a rough drive home & I don't remember much of the first 24-48 hours except for amusing things here & there - like warning the first few people to come over that I wasn't wearing pants. (I did cover up with a sheet though, so haha.)


***

After I started telling people about my diagnosis, I received an almost overwhelming amount of emotional support from all sorts of people. However, many of my fellow clinic escorts (plus a few others who wanted to help) provided tangible, edible support. At a Planned Parenthood luncheon in March, one of my fellow escorts took me aside to see how I was and ask some questions. She said that as soon as I had a surgery date, let her know - she would organize meals for us for awhile. When I seemed hesitant she took me by the shoulders, looked me right in the eye and said "I'm Southern & Italian - LET ME TAKE CARE OF YOU." (And I mean really, how can you argue with that?)

Fast forward to May. I had a surgery date & I let her know and sure as shit - she sent me a message to ask questions about food preferences, allergies, preferred meal times, etc. Within days, the entire first week after surgery was filled. Because of all these generous people, we didn't have to actually cook anything ourselves for almost a full two weeks. It was glorious. Some people cooked, some brought us take out, and a couple had food delivered to us from a restaurant. To be fair, I remember very little from conversations I had during the first few days when people stopped by - I apparently had a conversation with Serena that involved pirates and the Flying Spaghetti Monster...? (Jason mentioned it later on.) Yay Percocet!

Two friends who are medical professionals were quite helpful, one brought kick ass potato bacon soup for the first night and assessed my vitals. Another stopped over to help with questions we had concerning the drains and later brought strawberries & whipped cream.

There have been a handful of people who have randomly messaged me to check in & see how I'm coping. Words can't really express how much I appreciate that/those gestures.

Not to mention that prior to surgery people gave me books and the means to get more books (most of which I read while I was out). As I write this, I have returned to work. That doesn't mean this series will end. I still have more to say, but at times struggle with how I will say it.

This

Pre-dawn sky the morning of the surgery. Taken from our driveway.

In Which I Discuss Breast MRIs and Saving Nipples

Gentle readers, for this entry, I'm going to back track a little and discuss the breast MRI. You, like I, may be wondering "but, what makes this so different from a regular MRI?" Never fear, for I will explain. First, photos. The stark, plain one is a photo of what I referred to as the rig, the second is an example of how I (and other patients) are positioned for the scan. In my case, my arms were more extended, more like Supergirl or something, and I had an IV in my right hand. (And a 'panic button' bulb in my left.) 

The patient is naked from the waist up and, see those rectangular holes? That's where the breasts go. And then something was moved inwards to rest right next to them - unsure if it was to help with placement or to help direct the 'waves,' but it was fucking weird. I walked into the room in my gown & scrub pants and started giggling. Pretty sure the technicians thought I was crazy, but they ended up agreeing that yeah it is "unusual" looking. The people at Valley Radiology's breast center did their best to make it, um, comfortable, but my hands were going pins & needles by the end. (It was roughly 25 minutes long.) This procedure sucked ass. But, it did conclusively show that there was only cancer in my left breast. Side note: had I opted for a lumpectomy, because of my genetic mutation, I would have had to do this as well as the diagnostic mammogram & ultrasound every 6 months. 

Now, on to the discussion of nipples. Namely, mine. During the to keep or not to keep my breasts, I brought up the possibility of keeping some of the outer parts. Keep in mind, Jason & I had found out the evening before and had spent a little time researching how this works. Dr. O'Neill (my surgeon) said there were different types of mastectomies - including skin sparing and nipple sparing. She thought I should speak to a plastic surgeon, so I went. You see, and this may be TMI for some people, I wanted to keep as much of the original me as possible. Particularly my nipples, for reasons of sexy times. Mentioning this to one of my good friends, Amarise, resulted in this exchange:

Amarise: "Nipple conservation sounds like something people would pass out pamphlets about."

Me: "YES! HAHA! 'Save the nipples!  

Amarise: “Every year more and more nipples are disappearing. How will you stop it?”

Me: "Won't you please help?"

sad music in the background

Amarise: Cue Sara McLaughlin

So you can see I tried to keep a sense of humor about all this. The plastic surgeon advised that due to the size & shape of my breasts, nipple sparing surgery would not be a good plan. When rebuilt, my nipples would end up pointing down, which...ew. I did not want that. I later found online something about procedure called free nipple grafting. Where, during the mastectomy surgery, the nipple and part of the areola are removed & grafted to another part of the body. I was excited about this option and my plastic surgeon was game to try it, so that's what we did during the mastectomy. 

Getting the surgery scheduled was a pain in the ass. Two surgeons were involved which meant getting both schedules to align. And it would have been easier if the plastic surgeon's assistant hadn't sat on a VM I left for an entire week. There was a lot of back & forth prior to this, but then yeah. She sat on it for a week, then informed me my surgery was on 5/15 and I said "no," asking for it to be rescheduled because Phoenix Comic Fest (or whatever they call themselves currently) was the following week.

Now look, I know many of you reading probably think I'm crazy. That's fine. But the fact is, it was a small tumor, caught very early, I was expected at con as a panelist, and dammit, I was going to have some fun before this all got super serious. After a little more back & forth, they were able to acquiesce to my request and scheduled me for surgery on 5/30. Everything leading up to a surgery date felt like a runaway train, despite medical professionals saying things like "you're in control" and "whatever you want." I saw making them schedule when I wanted as a way to take back control - besides, I hate it when doctors schedule appointments & then tell you when to show up instead of asking. So, I got to meet comic writers I love, be Black Widow, and Osgood.

Me with some Bombshell Batwoman
cosplayers

Comics writer James Tynion IV

           

  

Marguerite Bennett, comics
writer, cat lover, Hufflepuff

                                  

So, I Have Cancer

Back in March, I was diagnosed with breast cancer. Multiple people suggested I keep a blog/write a book/whatever so rather than start a new one, I'm gonna utilize this one! Because, y'know, it's already here. I'll begin at the beginning...

Earlier this year, my husband found..something in my left breast. We weren't sure we were really feeling anything, but I still had an order from my old OB/GYN, I contacted the new one to give a heads up. They said "oh hey, if you have a thing, you need a different kind of test; where are you going, we'll send new orders."

March 13: Mammogram & ultrasound. They confirmed we were right, then a radiologist came in & told me it looked like cancer, I needed a biopsy, but it was too late in the day to get one that day. I spoke to their scheduler who said they could get me in at 12:45 the next day, but she'd call me in the morning once they got an order. Those words - that it looked abnormal, that 95% of things that look like it are cancer were like someone sucked the air out of the room and punched me in the stomach at the same time. I got quiet & I cried. I'd gone to the appointment alone, thinking the best, that it would turn out to be nothing.

(That night, we went to a VIP pre-screening of Tomb Raider in IMAX and IT WAS AWESOME. Not related, but hey, it was a lot of fun.)

March 14 Biopsy day! We showed up to the same place. I was taken back, shown into a room and settled on a table. They had me roll to the right and placed a foam cushiony thing under my left hip. I raised my left arm, my right arm was bent at the elbow, palm resting on my torso, head was propped just so and they said "oh that's perfect, don't move!" So...I didn't. For 25 minutes give or take. The radiologist who oversaw the procedure said that if it was cancer, I'd join a club I never wanted to be part of...and also told me it's extremely common for husbands/partners to find the lumps, it's also how she found hers. By the end of the procedure I was giggly because I kept thinking about how I was laying and also this:

Pose not exact but you get the idea.

So, I explained this & it got a laugh out of all present. I then was moved to a room to do another mammogram to ensure the small marker they placed was in the right spot. On that wall - a Pre-Raphaelite print that I love that also underscored the whole paint me thing in my head. They kept assuring me they'd call the following day with results for that reason and that I wasn't allowed to shower for 24 hours, I called off work the following day. They never called.

March 16, a Friday. I went to work. I spent all day wondering, waiting. Then, at  just after 4 something in the afternoon, my cell rang. Someone said they had a call from a doctor. I accepted & soon I heard a wavery, very old voice (much like Diane Rehm on NPR) come on the line and politely explain that my results were back but it was not good news. She told me I had cancer. Then asked if I was with family, when I replied I was at work she got a bit stammery, realizing the awkwardness of my situation. We hung up. I called Jason & told him. Then went to the bathroom to cry & texted my supervisor who was at her desk. We talked & she offered support and the chance to go home early.

 By the end of the weekend, I'd told my family & many friends who I'm close to and volunteer with. The following week, I met with a breast surgeon, had a genetic test, and a breast MRI.

2 weeks later, I had a lumpectomy scheduled for 4/5 and my surgeon called on 4/3 at 7pm from her car to tell me I had a genetic mutation (CHEK2) and we needed to discuss it in the office. Next morning, we went in & after a lot of weighing of odds and scientific evidence, I opted for a bilateral mastectomy. This was a devastating thought for me at the time. I did not want to give up my breasts. I'd spent many years not really liking or resenting their size and had only recently gotten comfortable and now they were going?!? So, I was given info to consult a plastic surgeon on options.

This is enough for now. It's how it started. It felt like a runaway train at first and that feeling continued for awhile.