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.

Charles Darwin Vs Karl Marx | Philosophy Tube

Mortality in the Time of Covid

I could put this in a Facebook post, but I'd rather put it here. I am terrified of getting the coronavirus & Covid-19. I have asthma, am overweight, have high blood pressure, and a history of cancer. I'm super high risk. Since I started working at home on 3/18/20, I have taken my temperature multiple times because of chest tightness. (It was asthma flaring up from allergies & stress.). I've coughed multiple times and been asked if I'm ok. (I was, the cough was productive.) I've left our house on average once per week for groceries and am horrified to see how few people seem to be taking this seriously.

In Arizona, we have a governor who up until late last week, thought hair & nail salons were essential services. Pretty sure golf courses are still on the list though. He refuses to issue a REAL shelter in place order and I worry what will happen. We've even made international news. There are SO MANY people here - and elsewhere - that think that getting out & about is somehow sticking it to the virus. The virus isn't an actual terrorist. This isn't 9/11 and you're not being brave. You're being fucking selfish & ignorant. 

I've read multiple articles that debate whether or not people can safely 'hang out' as long as it's outside. The consensus is that it's not a good idea. If there's a gust of wind, it can carry droplets from even someone speaking. As a homebody who does actually like to go out sometimes, this is hard and I recognize it. I know it's more difficult for my more social friends. 

There's a tweet I saw recently saying that the situation we're in is like Schrödinger's virus: we both do and do not have it. To find out we have to be tested, but there is not widespread testing. We all have to behave as though we are infected in order to keep everyone safe. 

In a breast cancer group I'm part of, multiple members are presumptive-positive. I'm not sure how many have actually been tested. In my own friend group online, 2 are presumptive positive (that I know of). They were not tested. I keep being grateful that I am not currently in treatment for cancer - any stage of it - then I feel guilty because so many people are, including a friend who has basically been isolated for a lot longer than the rest of us because chemo has fucked her immune system.

I don't have a lot more in this without devolving it into a rant about the casual cruelty & ineptitude of the current administration but let me close with what has been playing in my mind for awhile now, pretty much all the time as I try to remain a productive employee and keep a reasonably positive attitude. If I get covid, it will probably be bad (asthma). If things get really bad in Arizona doctors have to start trying to decide who lives and dies (aka who gets a ventilator), which has happened in Italy and if it's not happening in New York, it will probably reach that point. In that situation, if I get sick enough that I'm sent to a hospital (where I will be alone), there is one ventilator and a choice between me and a person who does not have underlying conditions, I'm not getting the ventilator. I will be the one who gets made comfortable.

And I also know that quite a few dear friends will end up not getting picked for the ventilator, too. It's a devastating realization.

So seriously. I don't care how much you want to get out of the house. Don't go visit family or friends. Don't crowd open areas like parks (national parks are largely closed now because of this nonsense), trails, etc, etc. You can't maintain physical distancing if everyone shows up to walk/ride/whateeverthe fuck. Walking in the neighborhood, the backyard, or a "sad Zumba video" (as Amarise put it) isn't nearly as interesting, but it's safer for everyone. 

Use any of the available video chat apps. Unless you have to go to work (which, my god - I feel so bad for everyone who has to go to work outside their home right now), unless you have a reason to be making a brief, properly physically distanced trip to a store for supplies. STAY THE FUCK HOME.

Fear & Cancer

Awhile back, I read an article from The Mighty about someone who was not ready to say they were "cancer free". It's a great read. I personally choose to use the terminology "no evidence of disease." For one, it's precise, which I like in discussing medical & scientific things. For another, it feels less like a jinx. Because yes, I'm a wee bit superstitious and running around proclaiming myself "cancer free" feels like tempting fate.

Here's the thing - no matter how much evidence there is that there is no more cancer in my body, the fear is still there. There roughly 5% chance of recurrence - probably less due to medications. I see my oncologist on a regular schedule and labs are drawn almost every month. Tumor markers are monitored. Which brings me to something that happened last month. 

January saw a great oncology follow up she said my labs were great, which was nice because my lymphedema had flared up massively to cause swelling in just a hand and rarely, that's evidence of a cancer recurrence. The week after that visit was my usual shot & labs. Two days after the blood draw, as I was pulling into a parking space at work, they called. "Your tumor markers are elevated." And with those 5 words it felt like the world dropped out from under me. Tears started immediately. The nurse said it could be a lab error and to rule that out, I should get the test run again. So I made arrangements to take a PTO day, went home, got Jason, then went to their office.

We spent time the rest of the day doing things I wanted to do, and I cried off & on. I had a lot of anger, too, because seriously. What the fuck. The whole point of having my breasts amputated and going through radiation that made my chest look like the worst sunburn of my life was to reduce the risk of this bullshit. How could things have changed so much from one month to the next? They told me it could be Monday til I got results. Things like "it's probably a mistake" and "try to relax" were...not very helpful. Mostly. I mean, the difference in the value was high enough that it was either an error or I was probably dying. (Marker for December was 18, January was 46. Acceptable value less than or equal to 30.)

Friday morning, they called as I was about to leave for work. I answered because, if they said I had cancer again, there's no way I was going in. However, it WAS a lab error. Now, before anyone starts to question - let me explain how this could happen because I politely asked them. The samples are processed off site, so if ANYTHING goes wonky with the sample, it can affect the results. Nicely, the tumor markers were lower than they were the previous month, (13), so that's something cool.

For almost a full 24 hours, I thought my cancer was back. 

I didn't tell a lot of people about this or talk about it much. Not even when it was in the past and I found out there had been a mistake. Cancer is the fucking worst. Even when it's gone it lives in your head, your emotions, and the trauma response for me was lighting fast automatic. 

Maybe one day I'll be someone who says they're cancer free, but that is not this day. Anytime in the near future isn't looking good either.

a wonderful card given to me by a close friend. 

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.