4 weeks till top surgery

About 10 days ago, my breast tissue started to feel inflamed and tender.  It wasn’t in line with my menstrual cycle, and it hurt way more than that would, anyway.  As it got worse and not better, I wondered if it was some strange manifestation of a psychological reaction to my upcoming surgery.  I wasn’t feeling stressed or anxious about it, but was this psychosomatic?  Then a patch of skin below my left armpit started to really burn and sting, as well as the skin around my shoulder blade.

Then 3 days ago, I broke out into a rash in those areas… and my boooobs still hurt a lot.  I was able to get in to see my doctor yesterday, and… it’s shingles.  She said that would also be causing the breast tenderness, because of where it is.  Shingles flare up along a line of nerves starting at your spinal cord, and wrapping around to the front of your body – so that you only get it on one side, within a range of area.  It’s like chicken pox, redux.  Everyone I’ve mentioned this to says, “You’re too young to get shingles!”  All I know about it really is that Carrie Brownstein got shingles while on tour (from reading her memoir, Hunger Makes Me A Modern Girl,) so I guess I’m in good company.

I got 2 prescriptions to help with the pain and the duration.  We’ll see – it should start clearing up within a week…  I’ll be going back in 2 weeks for my doctor to take a look.  If this had happened close enough to my surgery, it would have had to have been postponed.  That would have made me really upset!  According to this timeline, I should be OK.  It’s just so mind bogglingly coincidental that this suuuper painful inflamation occurred right in the area I’ll be having surgery. I’ll let you know which ends up being more painful – this or surgery!

Other than that, I feel relatively prepared.  I just had my pre-op appointment via phone call a week ago, and that has put things into motion for getting everything ready.  I got a huge packet in the mail of things to sign (informed consent), directions for when to do what, etc.  I made a checklist to make it easier.

Pay surgeon – I still have to do this.  I exhausted all info about my insurance plan, and there is no way insurance would pay for any of it.  I expected as much all along, so, no big blow there…

Get parking permit – In process.  My spouse and I will be in Ardmore, PA for close to 48 hours, and we need a temporary parking permit to park in the municipal lots.

Get therapist letter – In process.  My therapist just sent me her draft last night, and it looked good to me, so she should be faxing it at some point today.

Get prescriptions filled – Done.  This could be done well in advance, so your meds are ready for you when you need them.  I needed to get a pain med and an antibiotic.

Get lab work – Done.  I did it yesterday  morning.

Go through a pre-op appt. with primary care physician – Done.  I did it yesterday morning.  I killed 2 birds with one stone – this plus shingles diagnosis all in one.  She will be filling out a form to clear me, despite the shingles, and faxing it in.

Send in consent forms and everything else that needs a signature by me – I gotta get this together.  I think I need to re-print certain pages and figure out what I still need to read through.

Take photos of chest – I did this for the surgeon already, but I might want to re-do it.  Not while I have these shingles though!

I feel ready for surgery, mentally.  Emotionally, I’m wondering if something is going on (shingles are brought on by stress, which I’m not actually feeling).  I set up an appointment to see my therapist (who I haven’t been seeing lately), just to cover all my bases.  It can’t hurt!

GID: exclusion for top surgery coverage

When I started moving forward with the process of getting top surgery, I did so with the assumption that I would be paying in full out of pocket.  My therapist had looked into coverage a while back, for me, and told me it was not covered.  Still, though, times are changing, and I had a sliver of hope that my insurance plan might have been updated.  In my state, government funded health care now fully covers transgender related treatment and surgeries.  Maybe mine would, by now, too?

Yesterday, I was on the phone with a customer service person for over an hour.  At first it seemed promising.  I gave her the category number – F64.1 (gender identity disorder in adolescents and adults) and the code for the surgery type – 19304.  She said, “Double mastectomy?” and I said, “Yes.”  She then proceeded to try to find out whether the surgeon was in network or out of network.  She told me that if she’s in network, I would be paying a total of $70.  If she was out of network, I would be paying a $750 deductible, and 80% would be covered beyond that.  I started to get my hopes up – either of those would be awesome! – but also remain skeptical.  The customer service rep made calls to my surgeons office, to the surgical center, and to some other places.  She determined in the end that it would be out of network.

At that point, I said, “OK, I just want to make sure you’re doing this through the category of gender identity disorder?  It is a gender-related surgery.”  She responded, with a blankness in her voice, “That’s an exclusion under your policy.”  I replied, as my heart sank a little, “OK so nothing will be covered.  So it doesn’t matter whether she’s in network or out of network?”  “Correct.”

I was mad that she overlooked the category I gave her, as a first piece of information, and moved forward as if there would be coverage, only to let me down.  And that once I made it clear, she didn’t have anything more to say to me that might be helpful.

I asked her about the appeals process.  She said I would pay for and get the surgery, the office would submit the claim, the claim would be denied, and then I could work toward getting some reimbursement.

I brought her attention to a 7 page document that is called Medical Policy, Subject:  Gender Reassignment Surgery.  It lists criteria that need to be met in order for a surgery to be deemed “medically appropriate.”  I asked her what this was, and what would happen if I gathered enough information to move ahead with this.  I told her it was difficult to understand exactly what I was reading.  She said she was reading along with me, and that yes, these policies are confusing.  She then put me on hold again, and when she came back, she completely derailed that conversation – she steered me back toward the exclusions.  She added that not only was the procedure excluded on the basis of gender identity disorder, it was doubly excluded because it falls under “cosmetic surgery.”  The conversation was basically over at that point.  I stayed on the line to complete a survey about the call, and I gave her good ratings because she was way more helpful (making multiple phone calls on my behalf) than I was expecting.

I keep going back to this medical policy document.  I don’t know for sure, but I have this feeling that it’s the loophole for filing a grievance.  That if I can prove it’s medically necessary, I have a shot at getting at least partial coverage.

However, the criteria are so extremely binary in nature.  Some examples

The patient has completed a minimum of 12 months of successful continuous full time real life experience in their new gender, with no returning to their original gender, including one or more of the following:
1. Maintain part or full time employment; or
2. Function as a student in an academic setting; or
3.Function in a community based volunteer activity

The patient has undergone a minimum of 12 months of continuous hormonal therapy (unless contraindicated)
I would have to have two letters from licensed health professionals, one of them being from a psychiatrist or psychologist (that part would be easy).  If one could be from a psychologist, and the other from a psychiatrist, I just might be able to put something together (with a little stretching of the facts…)  If one has to be from a doctor or other medical health related person, I may be out of luck…
I’ve had close to 3 continuouos years of HRT (although I am not currently on HRT, and I did not move into the opposite gender).  I’ve had 10?  12?  years of continuous real life experience, although it has not been full time.  It has been in my “new gender” even though that has not been the “opposite gender.”  There is nothing in there about having to legally change your gender or name (good).
I’m not sure how to proceed exactly – all I know is that it’s going to be worth a shot…

I came out to my co-worker

I have been coming out to my (newer) co-worker in stages, over the last year or so.  At first, I just wanted him to stop calling me “honey” and “girl.”  So I told him that.  He asked about “brother” and “man,” and I said those were fine.  He easily made that switch.  I think he saw me as a butch lesbian.

He initially used to talk to me about his gay step-son, but over time, that changed into him talking about his transgender step-daughter.  She is transitioning while in high-school; I can’t imagine the stress of that!  My co-worker seems supportive if not a little critical about how she chooses to present herself.  So, with that door opened, I’ve talked to him about how I don’t feel either male or female.  He has asked if I would make medical changes, and I have been vague.

About 2 months ago, we were in the faculty lounge, and the newspaper was on the table.  The front page had an article about a new radio station I was getting involved in.  So I pointed it out to him and told him I’m a DJ.  He was super supportive and excited, asking me how he could listen, if he could come down and check it out, what I was playing, and if I had a radio handle.  I suddenly felt cornered because I don’t have a DJ name, I’m just going by Kameron, which is not the name I go by at work (yet.)  But that feeling melted away into, “it will be fine to tell him.”  So I did – told him I use a different name on the radio and outside of work, and I talked to him about how I would like to switch and use this name at work too, but it’s hard.  I also said I go by male pronouns.  He took it all in stride, more excited about the radio thing than anything else.

He has started to call me “Kam” when no one else is around.  I do not promote the use of “Kam” as a nickname, but coming from him, it is endearing.

Then last week, we were talking about his step-daughter again, and I segued the conversation into how I will be getting top-surgery.  (I had mentioned this once before, hypothetically, and he seemed confused, wondering if I was going bigger or smaller – because it probably seems like I have nothing there.)  I figured he is one of the few people I would fill in about why I am going out of work, and the sooner I can get some of that out of the way, the better.  I expressed my anxiety about telling our supervisor and about coming out at work in general.  And about what to say to whom.  It does feel good to be able to be open with one person at work, at least.

Yesterday, for the first time ever, I could clearly see the steps it would take to come out at work.  And it felt like I could actually do this.  Currently, my supervisor is out of work, so I’m not going to be doing anything about it anytime soon.  I feel like talking to her is the biggest hurdle.  If I could do that, the rest definitely seems do-able.  Part of me wants to skip talking to her, and just let her know via email, like everyone else, but I don’t think that would be wise…

Year end / I scheduled top surgery

2015 has been one of the hardest years of my life.  I was majorly depressed for 4 months of it.  I was moderately depressed for the vast majority of the rest of it.  I was out of work for a total of 2 months due to mental health issues.  I was in the hospital, and I was also in a partial hospitalization program.  I did do some fun things (like camping, going to Pittsburgh, marching in the pride parade, adopting 2 cats, going to the beach 3 weekends in a row, becoming a radio DJ, seeing Sleater-Kinney) but they failed to feel like much fun.  I’m only now starting to feel like myself for extended periods of time.  For example, today and yesterday (but not the day before), I felt like a person in a normal mood, and that felt great.  I hope tomorrow feels like that too!  I started on a new medication 2 weeks ago, and I’m really hoping something clicks…

I wrote a similar post last year, and I summed up gender-related stuff this way:
“I continued to settle into a new and improved place with hormone therapy and talk therapy, but I’m finding I still have a LONG way to go until I really am where I see myself.  I want to be out as non-binary in all areas of my life.  I want to go by a different name.  I want all the people who know me to use male pronouns in reference to me, not just most of the people…  I might want top surgery…”

I made some pretty big strides – I started to go by a different name, and now all my friends and about half of my family use that name.  It’s still growing on me – it feels about equally as strange as my former name feels, now, but that is actually progress.  Currently it feels like neither name really is my name, but I think that’ll shift with more time.

This year I went from feeling like I might want top surgery to scheduling a date!  This feels like my biggest accomplishment, based on the amount of mental headspace this topic has been taking up.  I’ll be going to Dr. Rumer on June 1st.  I chose this date because I purposefully want to miss certain things by being out of work.  I really do not like working in the summers, and I especially have a hard time with the transition from school-year to summer.  I have a lot of sick time accrued, and I plan to use a lot.  Often, people can be back at a desk job 2 weeks after surgery, but since my job is so physical, I plan on being out for 8 weeks, as of now.  Why not?!  That’ll allow me to miss the last 3 weeks of school plus half of the summer.  That would be really amazing.

So if I were to sum up gender-related stuff now, a year later, it’d look like this:  I want to be out as non-binary in all areas of my life (still).  I want to come out at work, so that pretty much everyone will be using my new name and male pronouns in reference to me.  No more dual identities.  I want to get through the ordeal of surgery without too much psychic pain (physical pain is fine).  I want to wear t-shirts!  I want to make up my mind about testosterone – take more?  take less?  go off of it?  I want to legally change my name at some point…

These are not resolutions, but it will be neat to go back and see if I made more progress or not.

Other things I’d like to focus on in the coming year:
– Getting back to being more social.  Being social this year was too difficult, so I didn’t push it.  I’ve been a little more talkative with teachers at work lately, and I’d like to re-connect with some people, both locally and through writing letters to far-away friends.
– Enjoying the summer.  I never enjoy the summer – I usually get depressed.  But since I’ll be most likely out of work for half of it, maybe I’ll feel it more.  I’d like to do a road trip, more time at the beach for sure, maybe some backyard fires, weatherproof our picnic table and actually use it, and go on walks.
– Taking more photos.  My dad gave me a new camera for my birthday/xmas, and I want to use it!
– Giving myself a break.  I’ve been pretty hard on myself, and I’m going to try not to be (as much).

Top surgery consultation #2

Content warning:  discussion of self-injury.

On Monday, I traveled to consult with Dr. Rumer, and the appointment went well.  In stark contrast, I had a terrible consultation with a local surgeon, at a cancer center, yesterday.  She mainly works with breast cancer patients, and the mail / paperwork I received in advance reflected this.  (The center could easily draft up non-cancer related documents for trans-clients!)

I was there for a total of an hour and 45 minutes – lots of waiting!  When I got there, I filled out paperwork about my breast cancer diagnosis.  I just put N/A for a lot of it.  Here’s a sampling of questions I was prompted to answer:

– What do you know about your diagnosis?
– Previous breast history?- Some cancers are more prevalent in persons of different racial and ethnic backgrounds.  The following information will help us to better understand your potential risk in developing certain types of cancers and to understand your prognosis.  [Followed by questions about ethnicity.]
– What percentage of waking hours do you spend up and about?
– more than 50%
– less thank 50% – I am confined to a bed or chair
– I am completely disabled, totally confined to a bed or chair

On the phone, when I scheduled the appointment, the woman was sensitive to the reason I was coming in, and to the fact I hadn’t legally changed my name yet.  Regardless, that didn’t translate over to the present day, and I was called by my birth name and even, “Mrs. [last name].”  I don’t think I’ve ever before been called “Mrs. [last name].”

I finally was brought up to the breast cancer suite and my vitals were taken.  I waited in an exam room and a nurse came in and went over some of the questions with me.  She left for a while and came back, saying, “let’s fill out this paperwork.”  This one WAS relevant to why I was there.  I asked her, “Why was I filling out papers for breast cancer patients?”  She replied, “Oh, well, they just gave you the wrong one down stairs.”  No big deal… ???

She left and a doctor with an intern student came in.  The doctor asked if it was OK if the student was present, and introduced her.  She then asked, “Are you so-and-so?”  I said no I’m not.  She said, “oops, sorry, wrong room.”  I sat there waiting a while longer and finally the surgeon came in with TWO student interns.  At no point did she ask for my consent for them to be present.  They introduced themselves and we got started.  She started by putting words in my mouth – “So you’ve felt this way since you were a teenager.  That’s when you started feeling different…”  I just let her roll with that.  She asked about mental health, suicidal thoughts, and even self-injury.  I’m not sure why.  She asked very little about gender identity.  I answered her questions honestly, including that I’ve had vague suicidal thoughts, and I used to use self-injury as a coping mechanism.

She then said they were going to leave the room and prompted me to put the robe on.  They were gone a very long time.  They all came back, rubbing hand sanitizer into their hands.  I had a flash fear thought – are all these people going to be touching me?!!!  Fortunately only the surgeon touched me, but the presence of all these people was enough for me to check out for this part of the appointment.  A few things that registered:

– She commented on my tattoo, asking if that was magic marker – it looked like marker.  ???
– She talked a lot while I was sitting there half exposed.  She described the procedure she would do, and manipulated my breast in her hand to demonstrate it.  I looked down briefly, and seeing her grabbing my breast was totally surreal.  She was talking at my chest, and not to my face.  I was poked and prodded a lot more than seemed necessary.
– She actually said to me, “This scar, is this from cutting?”  I could not believe I was being asked this.  I was in shock.
– I was aware of interns in the background, watching this whole thing.  They were fuzzy.
– I said to her, “I’m just in the consultation phase, and I have some questions for you.”  This changed the dynamic and she wrapped up the part where I was sitting there, vulnerable.

When this part was finally over, they left and I got dressed.  I waited a very long time again.  When they came back, I went through my list of questions.  She has a year and a half of experience working with trans-patients (really?!!), and does chest masculinizing surgeries a couple times per month.  She requires patients to be off T one week before and one week after surgery.  50% of patients will immediately retain nipple sensation, and 80% will eventually over time regain sensation.  She could not show me any examples of her work that would be related to my surgery type.  She could not tell me how much it would cost, not even a ballpark estimate.

Before leaving, I gave her feedback.  I told her how I had been misgendered by the staff.  She conceded that they needed to work on that.  I also, in front of the students, said, “As someone who is transgender, I have gender dysphoria around my naked body.  These may not be the best types of appointments to have students present.  It felt like I had an audience, and I didn’t feel comfortable being partially exposed.”  She responded, “Thank you for that feedback.”  I understand she might not have control over when she has interns with her, but she could CERTAINLY ask for consent, or ask that the interns not be present for the naked part.  I wanted to give her more personal feedback, such as, “It’s not appropriate to comment on my body,” but in the end I didn’t go there.  I just couldn’t right then.

This surgeon and the staff could benefit from some trans-related training, particularly to the sensitivities trans-people may feel about their naked bodies, specifically chests.  Make it short and sweet!

Top surgery consultation #1

I traveled to Ardmore, PA and met with Dr. Rumer yesterday.  The consultation went well overall, and it’s prompted me to start looking at lots of top surgery photos online, something I’ve done in the past, but without much of a framework or focus.

She’s located in a college town / upscale suburb of Philadelphia, and her office / house(?) is a white brick old Victorian creepy looking place.  Very apt for visiting 2 days after Halloween.  There is street parking, and you have to get buzzed in.  I was envisioning a medical center of some sort, but this place had the vibe of a hair salon – everything was whites, greys, and black, very sleek and futuristic looking.  The receptionist offered me something to drink.  I arrived early and was seen by the nurse practitioner right away.  She also offered me some water or coffee.

We went over my medical history I had filled out online in advance.  I guess I forgot to add in testosterone under “medications,” and she understandably assumed I wasn’t on T.  When I said I am on a low dose, she added that information.  (Being on T is NOT a requirement for getting top surgery.)  She also asked about how I identify, if I could provide a letter from a mental health professional (required), if I have legally changed my name, am I out to everyone in my life, and how long have I gone by male pronouns.  There were no issues or clarifications with any of my answers: That I am not FTM, I identify as non-binary, I can get a letter, I have not legally changed my name, I’m out to everyone except work, and I’ve gone by male pronouns for close to 10 years.  (That got a “wow” out of her, haha.)  I’m glad she didn’t ask me about gender dysphoria or how I felt about my chest, because I wouldn’t have known what to say / didn’t have a statement prepared.  Even though it seems like if I’ve made it this far, I should be able to articulate that!!!

She made sure I understood that I would be putting on an oversized paper vest momentarily and that Dr. Rumer would be looking at my chest.  Was I OK with that?  I said yes I expected as much.

She said she’d be back with Dr. Rumer, and gave me a moment to put on the vest.  They re-entered, Dr. Rumer said, “Nice to see you again.”  (Presumably because I’d said I’d heard of her through the Philadelphia Trans-Health Conference, although I didn’t go to any of her presentations or actually meet her.)  She looked at my chest for literally one second (I’m glad it was so brief) and declared I could go with peri-areolar if I wanted.  Is that what I wanted?  I said yeah, probably.

From there, she showed me a few slides about what to expect, and she showed me two before and after pictures.  The only disappointing aspect of this appointment was I asked her, “Do you have more pictures?” and she replied that she doesn’t really because they are all the same.  I was pretty dissatisfied with that – it gave me the feeling that these were the two best that she had hand picked to present.  I would have liked to see a dozen examples of peoples’ chests; there aren’t that many online.

Other than that, she was very friendly and personable and she answered all my questions thoroughly.

  1.  What are the odds of retaining nipple sensation?  Only less than 1% will not retain sensation.  (Those odds seem too good to be believed; I’m not sure I totally believe her!)
  2. How many appointments are required?  A lot!  One a week before surgery, one a week after surgery, then a few at different intervals (I can’t remember) and one at the one year mark.  For people out of town, most of them can occur over skype if everything is going smoothly.  The only necessary travel is for the surgery itself, then a week after, and then a year after.
  3. Do you have to go off T before surgery?  Yes, you have to be off T 2 weeks leading up and 2 weeks post-surgery.  Why is this?  Because of risks of excess bleeding.  I feel resistant about this and still don’t quite understand, but I’ve heard it before and would have to accept it.
  4. How long can I be out of work?  I have a very physical job.  She would write me a letter to go back whenever I want, especially since I have sick time accrued and wouldn’t be on disability.  I’d probably look at 6-8 weeks.
  5. Do you resize nipples?  She resizes areolas, and nipples retract on their own.
  6. The total costs she quoted me, including staying 2 nights in her office(?) / home(?) / guest rooms is $7,480.  That seems on par with other surgeons, maybe a little on the high side.

I have another consultation on Thursday with a local surgeon.  I will be curious how the two compare.

Moving forward with the process of getting top surgery

I have two consultations within the next two weeks with surgeons.  I can’t believe I made it this far – I didn’t always know I would get top surgery.  Even now, I’d say I’m about 99% certain, but I’m still hesitant to talk about it or write about it.  I’ve never written about it here other than just quick, vague mentions.

There were some hang-ups I had to work to get past (and I’m still working through) in order to allow myself to feel like I can do this:

It is a want, not a need.  I don’t need this – I’d say it’s been a persistent nagging feeling for years and years and years, but never an intolerable feeling of disgust or revulsion.  If my chest is not a source of gender dysphoria in a way I can’t live with, can I still get top surgery?  Yeah, why not?  It will definitely improve my quality of life.  Throughout adulthood, I have fantasized about wearing t-shirts or tank tops in the summer, without a binder.  I avoid binders when I can, which leads me to another hang-up…

My chest is small.  My chest is so small that it seems like I could just live with it how it is.  Can’t I just live with it?  It’s not cumbersome; I don’t have to do much to hide what I have.  In the winter, it’s not much of a problem.  I can just layer and I don’t have to bind.  In the summer, I think about it all too much.  Sometimes I bind; other times I just attempt to layer and be hot.

Ultimately, my chest doesn’t look how I think it should look, and if I have the means to change that, I don’t see why I shouldn’t.  Urgency (and my lack thereof) plays a role in whether I think I get to do this, but I can get over that.  I think.  I have a lot of shirts I’d like to wear, but don’t.  Because they don’t look right.  I spend a lot of time thinking about how my body could look different.

For a very long time, I thought I would get top surgery one day, but I had no idea how to make a first step.  Which just tells me I probably wasn’t ready yet.  It seemed so daunting as to be impossible.  Finally, this summer, I was corresponding with a trans-guy I know locally, and he said he got surgery in our city.  That blew my mind – I didn’t know there was anyone here.

I started looking at a Facebook group where others had written about their experiences with her, and I could suddenly wrap my head around moving ahead.  I called and booked a consultation for a month away.  As soon as I did that, more doors opened up.  I could suddenly envision traveling, meeting with other surgeons, all the stuff involved in getting top surgery, usually.  I did minimal amounts of research (I already know a bunch of surgeons by name – I’m sure I will do more research.  It’s going to be a long process) and called Dr. Rumer’s office, about 5 hours away.  I’ll be traveling just to meet with her.  That seems huge.  She waived the consultation fee because I have been to the Philadelphia Trans Health Conference, one of the many places she presents at.  That’s pretty cool.

These consultations happen to be only 3 days apart – it’s going to be a busy week, coming up.