1 month on testosterone

I’ve been injecting 50mg per week.  OK, not exactly true – after the first 2 weeks, I increased it to 80mg, because I felt like it.  Similarly, when I was on Androgel, I wasn’t great at sticking with the script.  Not sure why, but I have a guess that it’s because I wanna exert control over this area of my life.  It just doesn’t really seem like a big deal in terms of consequences, and it makes me feel better…

Even with the higher dose (Just for perspective – 50 is moderately low and is a common starting dose.  100 is also a common starting dose, so I’m not doing anything way out there), I really have very little to report, which feels like a bummer to me – I was expecting more!

(Just a note:  This post is a little confusing because I have “started T” twice now.  When I say Androgel, I’m talking about 4 years ago.  And when I say injections, that means what I’m currently doing.)

When I started Androgel (very very low dose), it was like, WHOA!  It felt like night and day, within the first couple days.  Here’s what I reported 5 months in, if you’re curious:  5 months on T without physical changes.  (This, unfortunately. is my earliest account, because I hadn’t started the blog until I was 5 months in!)

I guess I expected it to be like that, only tenfold, because my dose is now definitely not very very low.  Honestly, I don’t know how to compare the two doses, since they are administered so differently.  I tried to find info online about this, and could not find a single thing.  If anyone has something on this, such as, “____mg of inject-able T = ____mg of Androgel,” please let me know!  I’m pretty sure there’s no straightforward way to calculate this because, for example, everyone absorbs topical substances differently…

Anyway, I am experiencing these shifts, in little ways, again…  A little bit hungrier, a little bit of a higher sex-drive, a lot of “warm and fuzzy,” etc.

but this time around, I’m paying a lot more attention to physical changes (in a way where I want them, not in a way that I’m being hyper-vigilant about them not happening, like the first time around with the Androgel).  And so far, nothing!  Maybe just the slightest shift in voice.  Oh well, no big deal.  I can be patient.

I think what’s going on is, when I started Androgel, I had nothing to compare that to.  All the sensations I was experiencing were vast improvements over what I had going on, previously.  It truly was seeing the world and myself in a brand new way.  Decreased anxiety was mind-blowing because I’d never felt that – the ability to take a deep breath and really feel it?  Whoa.  Actually sensing my body as present/grounded, and not half-dissociated 24/7?  Incredible!

And it’s more like now, I’ve been free of anxiety for a long time at this point, due to a psychotropic drug that I never want to stop taking.  And the warm and fuzzy and the heightened sex drive?  I’m glad to see a return of these sensations (for sure!!!), but it’s more like, “Oh, right, I like this,” as opposed to, “Wow, I have never experienced this before and it is the best thing ever!”

That’s all I got so far!


How I became “Mixter”

This article first appeared on Transgender Universe, here:  How I Became Mixter

For the sake of clarity, I’m going to give myself a pseudonym dead-name, for this article.  Assume that before changing my name, my name was “KD Shorts.”  And my new, legal name is “Kameron.”

A little over two years ago, I was at a workshop at the Philadelphia Trans-Health Conference, and one of the presenters was mentioning that they go by the honorific, Mx. (Mixter) in their professional settings.  I had heard of this before, but I thought it was just a theoretical pipe dream.  Here was someone who was actually using it, in their actual life!  I felt soooo jealous.  I thought to myself (with a good dose of biting envy), “Oooh, look at the progressive academic who gets to waltz around in an enlightened and indulgent bubble all day long.”  I never thought I would get there.  Furthermore, even though I’m in my thirties, it was tough to envision a world where I was grown-up enough to have an honorific of my own.

I’d done an excellent job at avoiding it.  No Mr. or Ms. for me!  I am a janitor at an elementary school:  a place where there’s a lot of “Mr. / Mrs. / Miss / Ms. [last name]” around the kids, and then first names amongst ourselves.  Except for the custodial staff.  It’s first names all around for us, generally.  Everywhere except for our name plates on the custodial office door.  There, we are “Mr. [last name]” and “Mrs. [last name]”  I had somehow gotten away with requesting that I be simply “KD Shorts.”  It was awesome.

There was another sticking point though:  every year, at school pictures time.  We get our pics taken,  and then we get some freebies, as well as a sheet of all the staff pics – just like a student would get a sheet of their class.  And so, we had to give our names, to be recorded on the sheet.  It would vary from year to year, depending on how vocal/empowered I was feeling.  I usually told the portrait employee, “no Ms. or Mr.  Just KD Shorts.”  There were a few years though, where I was “Ms. Shorts” as the default.

These past few weeks, I’ve been riding the wave of legally changing my name, which has been especially gratifying at work, where I was still known as KD Shorts, (she/her/hers).  Everywhere else in my life, I had been going by “Kameron” for about two years, and (he/him/his) for many many years prior to that.  So, essentially, I utilized this time of change as a chance to come out at work.

I talked to the principal and assistant principal on Friday, December 23rd.  I stated that I was changing my name and my pronouns, and that I identify as neither a man nor a woman.  The impromptu meeting was less than stellar – they fixated on bathrooms and the fact that the change was going to be hard for people to remember.  They did mention that they wanted me to feel comfortable, but didn’t offer any concrete ways that that could happen.  I did not panic though – I was thinking, “do not catastrophize this.”  I remained neutral and open, but I didn’t use it as a teaching moment.  I shouldn’t have to!  I thought that things would work out fine, ultimately, and if not, I could always call in the big guns:  my local gay alliance’s speaker’s bureau, to do the educating on my behalf.

We all took a time out for winter recess.  I then came in on Tuesday, January 3rd, and the principal asked me if I’d come speak to her.  Of her own volition, she had consulted the head of HR, and she had basically done a 180.  We had a much more fruitful discussion.  She still was strong in her opinions, but she made it clear that every choice was up to me, and I could take some time to think it over.  We ended up talking about:
– How to come out, and the timeline
– How my name would appear on my name plate on the custodial office door
– Bathrooms

Coming out:  I said that I have already pretty much told the people I would naturally tell in person, the ones I see regularly or semi-regularly.  And I wasn’t going to be able to get to everyone, so if she could either make an announcement at the next staff meeting and/or send an email, that’d be great.  We agreed she would do both.  I told her I’d get back to her with the content I’d like her to say.

Name plate:  The biggie!  I said I had two ideas, but I didn’t say exactly what they were.  (I’ll say it here though!  Either  1. just “Kameron” and nothing else.  2. Mx. [last name].)  She said that her thought was that my co-workers have Mr. _____ and Mrs. _____, so it’d be great if I conformed to that and picked one or the other.  I said, “OK!  Great, there is another option that I will go with.  It’s Mx.  That’s pronounced ‘Mixter.'”  She wrote it down in her notes.  It was a done deal!

Bathrooms:  I could write an additional article about this (heck, probably more like a dissertation!), but to keep it short and sweet:  We agreed that I get to pick where I go, and I am making no big deal of it, and it does not need to be a part of any announcement.

All’s how it should be!  Just one more small way I am joining the world of adults.  That’s Mixter, to you.


Finally changing my name legally

I started going by “Kameron,” socially, in May of last year.  I had a turning-point conversation with my spouse a couple of months before that, but I wanted to let it sink in, because once, years ago, I picked out a name I thought I wanted to go by.  But then I just didn’t do anything more with it.  So I wanted to see if that was going to happen again, or if I would actually move ahead.  My spouse started calling me the name around the house, and then, a pivotal moment was trying the name out within a group of strangers that I was only seeing on a temporary basis:  Being transgender while in a partial hospitalization program.  That helped immensely; to hear the name repeatedly and see if it would sink in.  Once that felt right, I emailed a bunch of people with this new information (and with a new phone number).  That was a big move, but I haven’t regretted it.  It’s been a super easy transition – no one, surprisingly, has messed up in front of me, once.  Plus, acquaintances and friends of friends heard word from others, so I barely had to tell or remind anyone!  So cool!  (Well, ok, except for family members, which is different).

Last Monday, I finally went downtown to get the process rolling on getting it legally changed.  I think the hold-up was:  I wasn’t ready to come out at work, and I wasn’t sure if I wanted to change my last name, too, while I was at it.

I’m now feeling good about coming out at work within the near future.  Also, I decided to change my first, middle, and last name.  That’s going to take some getting used to, since I haven’t changed that anywhere yet, even socially.  Guess I gotta come up with a new signature too.

The process was not too bad:  I printed some documents out from an online site, and fortunately my spouse’s dad is a notary, so we were able to go over to her parents’ house to get that all in order and signed, the day before.  I had Monday off work, and it turned out to be a gorgeous day, so I decided to bike.  (So glad I did because I ended up having to go back and forth, and to a few places.  Parking is tough downtown, and I was able to zip around and lock up at VIP spots anywhere I was going, haha – VIP spots meaning street signs and trees.)

I first went to the information desk at the County Clerks’ office.  The lady was brusque, giving me 2 other documents that had to be filled out, asking me if I had my index #, and telling me I needed 3 copies of all these papers.  Luckily, my spouse’s dad, who works downtown, had told me I could contact him if I needed anything else.  I called him, biked over the few blocks to his office – it was cool to see where he works! – and he helped me fill out the rest, plus he made copies of everything and paper-clipped everything neatly and efficiently, with clips on both the top and the sides!)  I thanked him and rode back and got in line, where I stood for probably a half hour.  When it was my turn though, I got through quickly.  I paid the $210 fee, got my index number, and got a receipt.

They told me I then had to go to the Hall of Justice, to the Judicial Clerk’s office.  This involved more bike riding, plus a walk through a metal detector and asking around in order to find the right room.  Things went smoothly there too, although I noticed that on the receipt I got from the County Clerk’s office, they spelled “Kameron,” “Kamerson.”  Aarrgh!  I asked if this was going to be a problem, and I was assured that it was fine – the judge wasn’t going to be looking at that at all.

I then biked to a coffee shop and worked on some writing for the rest of the afternoon.  About to head home, I ran into a friend, and we chatted for a while.  Then a stranger approached us with a digital recorder, and he asked if he could ask us a question for a radio show.  I said, “probably!”  So he launched into, “OK, so the Cubs won the world series, and that hasn’t happened in 108 years.  And then Trump was actually elected president.  So, with all this going on, what’s next?”  I said, “Flying lizards,” just because it was the first thing that popped into my head, but if I had thought for even just a second, in retrospect, I would have said, “SUPERMOON!” because I’d heard that on that day, (November 14th), it was the biggest it’s been in 69 years, and it’s not going to be that big again for another 34!

supermoon

Oh well.  Next time I’ll make more sense.


Summer of t-shirts #4 / Transgender Trailblazers

This is a series in which I highlight different shirts I am now able to wear un-self-consciously, because I had top surgery earlier this summer!

This one is a brand new t-shirt – it was designed by Erin Nations, a transgender comic artist living in Portland, OR.  You can get one here:  Transgender Trailblazers Tee.  You might want to act now – they could go fast!  (Looks like he’s already out of size M light-blue shirts, for example).

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From the website:  “50% of each sale will be donated to the TransWomen of Color Collective.  TWOCC is a grass-roots funded global initiative created to offer opportunities for trans people of color, their families and their comrades to engage in healing, foster kinship, and build community. They strive to educate and empower each other through sharing skills, knowledge and resources as they build towards the liberation of all oppressed people.”

Ten trailblazers are illustrated.  “They were/are advocates, activist, pioneers, community leaders, and historical figures in the transgender community. Through their actions and involvement, they paved the way for many trans people, allowing us to live our lives more openly, safely, and authentically.”

Here they are, with a brief description that I cobbled together from various websites:

Sylvia Rivera (top) – She was a founding member of the Gay Liberation Front and the Gay Activist Alliance.  She attacked the HRC and Empire State Pride Agenda for not being trans-inclusive.  A lasting quote:  “Hell hath no fury like a drag queen scorned.” The Sylvia Rivera Law Project was founded in 2002, in her honor, and aims to ” guarantee that all people are free to self-determine gender identity and expression, regardless of income or race, and without facing harassment, discrimination or violence”.

Miss-Major Griffin-Gracy (2nd from top, L) – She’s the executive director of Trans Gender Variant Intersex Justice Project.  She was a leader in theOne month after top surgery / Summer of t-shirts 31 Stonewall Riots and then imprisoned for 5 years, which led to her also fighting the prison industrial complex.

Leslie Feinberg (2nd from top, R) – A self-identified trans, butch lesbian, communist.  Wrote Stone Butch Blues in 1993.  Also wrote Transgender Warriors and Trans Liberation.  She did not care what pronoun was used in reference to her, as long as it was with respect.

Alexander John Goodrum (2nd from top, center) – An African American Trans, civil rights activist and the founder and director of TGNet Arizona.  He took his own life while in a psychiatric ward in 2002; he was posthumously awarded the Godat Award for his service in the LGBTQ+ community.

Lou Sullivan (3rd from top, L) – He was possibly the first trans-man to openly identify as gay, and he was largely responsible for the understanding of sexual orientation and gender identity being separate facets.  He also founded FTM International.

Kate Bornstein (3rd from top, center) – There’s no way to condense her accomplishments here.  Just look her up!  Read her books!  Also she just posted on her twitter feed, today, about it!  – “Tickled pink to be drawn on one of these T-shirts by Erin Nations.”

Louise Lawrence (3rd from top, R) – She worked with Alfred Kinsey and later, Harry Benjamin, and she counseled other trans-people just by having them drop by.

Marcelle Cook-Daniels (bottom, L) – He worked for the IRS and was working on his masters in computer science.  He was a transmasculine African America activist and leader, presenting at many conferences and contributing to a handful of books.  He took his own life in 2000.

Reed Erickson (bottom, center) – He became very wealthy over time through his professional life – he studied to be an engineer and later successfully ran two large companies and invested in oil-rich real estate.  In 1964, he founded the Erickson Educational Foundation, which “helped to support, both through direct financial contributions and through contributions of human and material resources, almost every aspect of work being done in the 1960s and 1970s in the field of transsexualism in the US and, to a lesser degree, in other countries. The EEF funded many early research efforts, including the creation of the Harry Benjamin Foundation, the early work of the Johns Hopkins Clinic” as well as information, counseling, and a referral network.

Marsha P. Johnson (bottom, R) – A close friend of Sylvia Rivera, she was a leader in the Stonewall Riots and later a co-founder of Street Transvestite Action Revolutionaries and an organizer with ACT-UP.  She was also a member of Andy Warhol’s drag queen troupe, Hot Peaches.  A lasting quote, whenever she was asked what the “P” stood for:  “Pay it no mind!”

Others in this series include:

One month after top surgery / Summer of t-shirts #1

Summer of t-shirts #2 / How to fold a shirt

Summer of t-shirts #3 / Return to work


Happy pride weekend, and The People

Just like in past years, I know I’m behind on the pride-related post, but this really is when our city celebrates pride.  This year’s theme was “Let’s Make Magic.”  My partner and I took that concept and twisted and twirled it to suit us.  She has a wand that a friend made, and she has lots of fun black clothes.  She also has badass sword earrings and newish leg tattoos.  I have this zebra print cowboy hat that I’ve worn a lot for drag performances, and recently it’s acquired a white plastic flower, but I don’t know from when or where.  I also had an idea for a magic trick.  Here’s some pictured from right before we biked to get down to the parade:

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This year, we started out earlier than usual, and went to a friend’s house for a brunch party ahead of time.  Three of them were wearing black matching short-shorts in overall form, with nothing underneath, plus loads of glitter and spray paint and face makeup.  They had made incredible puppet-like creations to carry, and they planned to watch the parade and then jump in at the end.  That sounded fun!  But my spouse and I also wanted to march with her employer (a food co-op), like we had done last year.  So we split our time half and half:  after the party we went to find her group, and we did half of the parade with them.  I handed out 300 coupons for $5 off a $25 dollar purchase.  I love handing things out!

Then about half-way through, we jumped out and walked back to where our rouge group of friends were watching.  Every time a dog walked by, a bunch of them would go pet him/her.  And every time there was a gap in the parade, they’d all walk into the road to fill the space until the next group caught up.  Once the last group passed by, they jumped in and started chanting, “The People, The People…” and urging other spectators to jump in and join.  A lot of people did!  The mass got larger and larger until we reached the end and people started dispersing.  It was a blast!  Usually in the parade, I’m with a small group, and it was really great to just get swept up in this energy.

Afterward, we decided not to go to the festival because of the admission cost and crowds.  We met up with some of my spouses co-workers for pizza and beer.  The following day though, we actually attended the picnic, which I haven’t done since I was a teenager, because we wanted to catch up with some friends.  It was low-key.  We saw some drag performances, which do not quite translate into a mostly sober, middle-of-the-day, middle-of-a-field environment.  Haha.

This may have been the most fun I’ve had during pride in years.  I think because we were with different people, throughout the weekend, and just because I was less stressed and anxious.  With less anxiety, there’s more potential for fun!  I love it!  (Also, we were having a lot of fun with our costumes!!!

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Here are some past posts about Pride:

Happy pride weekend, and BRAWL
Happy pride weekend

 


My insurance unexpectedly sent me partial reimbursement for top-surgery

The title says it all, but here’s the details:  Prior to surgery, I put a lot of effort into trying to figure out what I might be able to get reimbursed for.  I was on the phone with customer service for a long time one day; I scoured my insurance’s webpage; I tried to figure out codes and what they mean; my therapist called multiple times on my behalf.  I oscillated between feeling hopeful I might get partial coverage, and being convinced that there was no chance.

Ultimately it seemed like there was no chance.  I found a promising document at one point called, “Gender Reassignment Surgery Medical Policy,” followed by criteria to prove it is medically necessary.  Then I was told that that applies to some insurance policies with my insurance company, but my particular policy excludes this coverage, and that was the bottom line.

Still, people told me that it’s against the law to deny coverage, on a state by state basis, and my state should cover it.  I paid out of pocket, first for the surgeon’s fees in advance, and then for the surgical center, the day of.  After the fact, I asked my surgeon’s office to send me an itemized bill of what I’d paid for, and I submitted that to my insurance company, without much hope.  I figured it’d get denied, then I’d appeal and take it as far as I could.  Maybe I’d get some advice from my local gay alliance, etc.

About 2 weeks later, I got a piece of mail.  I didn’t open it because I didn’t care to read the bad news.  My spouse and I were leaving for vacation last Wednesday, and I figured I’d better open it before we left.  In case there was some deadline for appealing it.  I opened it up, and it was a check for $2,800.09!!!!  I yelled at my partner about it, the excitement of it, which must have been jarring because I almost never yell.  What an amazing way to start our trip!

That’s 47% of the surgeon’s fees (including 100% of the accommodations – staying at the surgeon’s guest room!)  I really could not believe it – either the person on the receiving end wasn’t paying attention at all, or they knew exactly what it was and had some strong personal beliefs of what should get to be covered!!

Now I’m just deciding if I should also get an itemized bill from the surgical center and try to get more money back…  Maybe I don’t want to push my luck…

It really paid off to just try, even though I didn’t believe anything would come of it!

Here’s a post I wrote earlier on this topic:
In February, I wrote GID: exclusion for top surgery coverage


2 weeks post top surgery

Content Note:  vanity.

When I first saw my chest, looking down while everything was being unwrapped, I was pretty happy.  Everything looked good, except for the fact that the left side was larger than the right.  I was assured it was due to swelling, and everything would even out.

Now that another week has passed though, I’m not feeling it.  I am more and more skeptical that there is much, if any, swelling going on.  My spouse agrees.  Regardless, I’ve been taking arnica and bromelain… using ice packs a little bit.

Right now, there is not enough symmetry, in multiple regards.  The areolas are different shapes, and they are too large (not “nickle sized,” like we discussed).  The nipples are also too large, but it’s kinda hard to tell what’s going on there (they’re currently being smooshed flat, and will continue to be for another 2 weeks.)  The biggest thing, though, is, I have different sizes going on, which contributes to the areolas/nipples being not in the same place, on each side.  I don’t like that!

All these differences are fairly subtle, but definitely noticeable.  I know it’s way too early to be coming to conclusions about how things look, but, so far, not so good.

I’ve been in a pretty negative space.  I’ve felt so negative at times, in fact, that it was hard to feel motivated to do all the showering and “nipple care” stuff.  This has gotten better over time.  Everything could change a lot, as I heal; I do recognize that.  It’s not all bad.  Every time I have the sterile pads and binder off for a little while (to let things air out), and I put on a t-shirt (carefully!), I think, “This could work!”  Excitement is there, somewhere.  Sometimes I push down the good stuff, and remain guarded and reserved.

There is something here though:  When picking a surgeon, I wasn’t going off of a whole lot.  I mean, I pored through what was available on transbucket, for sure, and searched resources, youtube, and the like.  But I didn’t really entertain all the possibilities very much, in my head.  I had a gut feeling about one route, and kind of just stuck with that.

This isn’t the first time I’ve made huge, life-changing decisions in this manner.  But I kind of hope it might be the last time.  (I know it won’t be, haha.)  There are better ways to go about narrowing down all the options!

There is one resource that I just learned about a couple of days ago, because a fellow blogger pointed the way.  Gabriel wrote a post called Getting Started With Top Surgery.  He mentioned “top surgery Facebook groups where people share their results and stories with their surgeon as well as the price quotes they’ve paid.”  Oh yeah!  Facebook.  That had not even crossed my mind, unfortunately.  So I just joined an FTM top surgery group, and wow, this is where all the good stuff is.  Wish I had known about it 6 months ago.

Edit:  My spouse suggested I stop looking at the FTM top surgery page for a while.  That sounds like a good idea – I was starting to get obsessive about it.  She said wordpress is good.  Stop going on facebook.  Haha.  I agree.

I feel torn about whether I will post pictures or not, and if so, where.  Before surgery, I was sure I would not post pictures on this blog, but I would post them on transbucket, when I feel ready.  (They can be accessed if you create an account on transbucket).  This still sounds like what I’m going to want to do.  I do not plan on ever being shirtless in public.  So, in regards to aesthetics, the most important thing is how everything looks while wearing a t-shirt.  Other than people looking up pics as a resource, the only people who are going to see my chest are my spouse and me (and medical professionals, when necessary).  So is it important what it looks like?  Ultimately, yes.  But for right now, as long as I can wear whatever I want, I will be happy enough…

During my most recent therapy appointment, right before surgery, I had said, “I’m worried my chest won’t look as good as it does now.”  As opposed to saying, “I’m worried my chest won’t look as good as I envision.”  That, to me, says a lot.

In other news, I had a great time in Philadelphia with my mom, after my follow-up.  We went to a brewery and record store.  We met up with friends at the Philadelphia Trans-Health Conference and went to two workshops.  Wish we could have stayed longer!

Also, my spouse and I went to a wedding this past weekend, and it was a lot of fun!  Their ceremony reflected who they are, a lot, and everything was casual and laid back.  After the ceremony, I was asked to sign the marriage certificate, as one of the witnesses.  This was a total surprise!  I felt honored.  I asked the officiant if it had to be my legal name, and she said it didn’t matter.  Awesome!


Oregon recognizes legal non-binary status

On June 10th, there was one small victory for the LGBTQ+ community and allies:  A trans-person named Jamie Shupe filed a petition for a gender change in April, in Portland, Oregon, and they were finally in court in front of a judge on Friday.  Their attorney, Lake J. Perriguey, has stated, “Oregon law has allowed for people to petition a court for a gender change for years, but the law doesn’t specify that it has to be either male or female.  The law just says, ‘change.’ Historically, people have asked for a gender change from male to female and the other way around, but Jamie is the first to ask for the gender of ‘non-binary.'”

This is the first time this has had a successful outcome in the United States.  I’d be curious to know whether others have tried before, in other states?

According to the New York Times, the judge, Amy Holmes Hehn, told Mr. Perriguey that he was “pushing the envelope.”  And the attorney’s response was, “We’re not, really. The envelope just needs to get bigger.”  I love that!  The full article can be found here:  Oregon Court Allows a Person to Choose Neither Sex.  I am psyched.  I feel that, within my lifetime, I will be able to do this too.

Another cool thing:  A few months ago, The New York Times started an ongoing project where trans-people could share their own stories, in their own words.  (I participated in this too.  Here’s what I wrote:  Kameron.)  You can still share your story too:  Share Your Story.

Jamie wrote, among other things, about their experiences in the military, all the discrimination they faced, and that although they legally changed their gender and name, the military would not change their ID card.  “After a bad experience in the ER of having a female patient bracelet cut off and replaced with a male bracelet that had my old name in front of a room full of people, I asked the Army for a new ID card, and for my gender to be changed in their DEERS computer system.  The Army responded with demands that I have unwanted SRS surgery, and that my spouse of 27 years relinquish her military benefits.”

Read the rest of their story here:  Jamie Shupe.  (At the time of the story, they identified as female.)


6 days post top surgery

Going into surgery, I was in pretty rough shape.  I felt sick (although I didn’t want to say so, specifically, to anyone other than my spouse… I kept saying “slight head cold”) and exhausted.  Luckily, my cold symptoms were not too worrisome, medically:  no fever, no chest congestion / trouble breathing.  Other than the cold, I felt mentally prepared.  In retrospect, I totally was. But, not so much prepared for the recovery process…

office / home / guest rooms mansion

office/home/guest rooms mansion

Surgery Day:  We arrived at 6:15am, surgery was from 7:30-9am, I was sleeping till about 10:30, and we were leaving by 11:30.  At which point, I felt a lot better than I had for days – it even felt like my cold magically disappeared.

Everything went smoothly, except for the fact that the surgeon was about to do the wrong procedure.  I was afraid this was the case because during the entire process including the consultation, the paperwork continually listed “double incision mastectomy with free nipple grafts.”  Even after I called a month ago to verify we were on the same page with the peri-areolar procedure and was assured that we were.  So when she came in and said, “Double incision.”  I said no, and luckily wasn’t phased by the mix up.   She said peri-areolar, I said yes, and she drew circles around my areolas.  I talked to her about nipple size, saying I wanted them small.  She said, “They’ll be smaller.  Your nipples will be nipple-sized.”  That was not very reassuring, but after she left, and before the anesthesiologist came back around, my spouse clarified that she had said, “your nipples will be nickle-sized.”  That sounded better.

If you want to read a more detailed account of what it’s like, here’s a good one someone wrote just a few days ago:  Surgery.  It was a lot like that. Back at the guest room, we texted with some people, a Philly friend came and visited for a while, we watched Seinfeld, and we went to sleep early.  I was up a lot that night, ravenously eating snacks and just not able to get comfortable.  I was sleeping sitting up, at the foot of the bed, a lot.

Day after surgery – The next day, we were driving home.  And I was in bed by 6pm.  My cold symptoms were back, and I was not feeling so good anymore.  I’ll bet that first day, I had a good mix of adrenaline and endorphins flowing, plus whatever they put in the IV.  And then I crash.

2 days after surgery – I sat outside for a while.  A friend came over, and we chatted for about 30 minutes before my spouse and they went thrift shopping.  We listened to some podcasts.  I read a book about subway art, written in 1984, a book I had found in the trash at school.  We watched 2 episodes of Mad Men.

drinking water

Drinking water.  Feeling pretty good.

drinking water. I did not plan on wearing this Hawaiian shirt. Turns out I don't have that many short sleeved button down shirts that will comfortably fit over the drains I have in!

Drinking water. (I did not plan on wearing this Hawaiian shirt. Turns out I don’t have that many short sleeved button down shirts that will comfortably fit over the drains!)

 

 

 

 

 

 

 

 

 

 

 

3 days – Podcasts, Mad Men.  I stopped taking the pain meds (Percocet) because they were causing OIC (opioid induced constipation).  The pain increased throughout the day, but it’s not like Percocet was all that effective anyway.  We went to my spouse’s parents’ house, which did not go so well (I could not bear being social, especially once a family friend came by – I just went and sat outside.)  We went to the grocery store on the way home – that was OK.

4 days – Glad to be off Percocet – realized that there are other pain meds (D’uh!) so I took an Alieve.  I feel like 95% of the pain now is due to this fucking surgical wrap I have to wear for 7 days.  I can only take shallow breaths; I can’t laugh or yawn or cough; it’s digging into my ribs and underarms; it’s way too tight; it just fucking sucks*.  There’s a reason I didn’t bind!  We went to the movies – nice to get out of the house.  Also, one of our cats got suddenly freaked out by my Frankenstein walk (even though I’ve been doing it for days), and she bolted off the table, knocking a bunch of my records onto the floor.  It was loud.  Also, I had a mini melt down about hating asking for things that are so basic, telling my spouse that I keep doing things because I would rather do them than ask – open and close doors, get ice trays out of the freezer, pour water from our britta, reach up high for a Q-tip, carry my laptop…  I gotta stop so I don’t mess up my healing process!  She was on it and strategized a bunch of new ways to make things easier!

5 days – My spouse went back to work.  Our refrigerator was making a loud noise this morning and stopped working.  That was stressful!  I called a repair person, then changed my mind because we should just buy a new one because this thing is super old.  My spouse’s mom came over to save our freezer items for us, store them at her house.  Then the fridge started working again, so it feels like less pressure – we’ll still get a new one, but it doesn’t have to be today.  A friend brought over lunch – I liked that!  My mom stopped by after work.  I felt anxious and lightheaded for a lot of the day.  I was feeling really confined/claustrophobic, as if this binding thing were made of plaster of paris, or steel.  I had a serious melt down (I got an all-too-real glimpse of what it could feel like, if I lost it right now – I felt in danger of becoming more and more triggered), and told my spouse we need more people around us, helping.  She called her parents to make that happen.  We talked and I felt a lot better.

6 days – That’s today!  I only managed to sleep 3 hrs.  I’ll be spending more time with people today.  I’m just going to try to relax.  I also gotta start preparing for going back down there tomorrow, to get this fucking binding off.  Oh, and the drains.  I’m going with my mom.

Overall, I’m in more pain than I thought.  And I’m way less out of it than I thought (like, I didn’t get to be in a fun pain-killer induced haze, haha).  And I don’t like TV that much and I’ve been up and about a lot.  I hate not doing things because it reminds me of being depressed.

*  Note:  this may be the only time I’ve used swear words on this blog (in reference to the surgical binding).  It’s that bad.  Also, though, I appreciate this thing because it reminds me of where the limits are and also it’s preventing me from coughing stitches open or anything like that.


1 day till top surgery

My spouse and I are leaving shortly, to drive down and arrive by mid-afternoon, to then get ready for surgery in the morning.  I hope.  I’m saying, “I hope,” because I came down with a cold 3 days ago, and I still feel stuffed up.  I’ve searched the internet for, “Can I get surgery if I have a cold?” and there really is no consensus.  It’s a good sign that I don’t have a fever, and I don’t have a cough.  But ultimately, it’s up to the surgeon.  It feels like I have a 50/50 shot here.

And I haven’t been able to get in touch with their office any earlier because of the holiday weekend (I did email a heads up though), so I’m going to have to call while on the road, once their office is open…  When I call, I am going to act as though everything is proceeding like normal, just want to let them know about this development.  Because I really really really just want this to happen.  Tomorrow.  And I don’t know what I’m going to feel if I’m told, “Don’t bother coming.  …We can schedule you for the last week of June.”  Or something like that.

Between this and shingles, it feels like my body is trying to say, “this is not happening.”  I’m angry with my body.  I was so super careful – eating well, sleeping well, I don’t recall being around anyone who was sick…  I wasn’t even feeling stressed or anxious.  And this is super strange for me too – I don’t generally get sick often.  I used to, but not anymore.  I don’t get headaches.  I don’t get queezy.  I don’t throw up easily.  So what’s with the shingles (which have thankfully cleared up in time) and the cold?!?

I currently don’t feel stressed about the surgery.  I feel ready.  I feel stressed about the cold, but not about the surgery.

So, I guess I’ll know what’s happening within a few hours.  Let’s hope next time I write, it’ll be good news!!!