Part 1: Leading up to “The Surgery”
Well, I had the surgery! August 27th, 2019 to be exact. It was not the fairy tale experience I was hoping for; for many reasons. Nothing in my life has ever gone easy and this turned out to be no different. We always hope for the fairy tale, persevere through the adversity, and come out stronger on the other end? Well, that’s the hope anyway. (Don’t let me mislead you, I would do it all over again in a heartbeat…)
The prep — First appointment
Well, the entire process is a bit slow but it is sort of designed to be this way on purpose. After some phone calls and emails, I began to share some necessary info to get ready for a first appointment, or should I say interview? My choice ended up being with a well known surgeon in New York City. It seemed like a good option and only a couple hours drive for me; a place I can get to relatively easily.
I had visited the city many times on school trips and later in life to see a play or a show here and there; each trip was an adventure of sight seeing. New York City is an experience everyone should do at some point in their lives. I had eaten lunch at Tavern on Green, shopped at FAO Swartz, saw the architecture of Grand Central Station, been to the top of the Empire State and Twin Towers (High School trip); all the typical touristy type of things. However, the last time I was there (to see a show), was 6 months after 9/11 and it was so sad. Due to other life changes that occurred after, it had been a while since I had taken a trip back….
So, this trip for the appointment had to be special. I quickly made an impromptu plan to do some sight seeing around the appointment time. David Bowie had died a little while back and the Brooklyn Museum was soon ending their run of their tribute exhibit. It was something I wanted to see, so I had decided that was going to be the morning activity. And since I had never been there, I would finally make my homage to Stonewall as the evening activity.
Well, David Bowie was completely sold out and I had not purchased tickets online in advance. I should have checked online, so I only made it to the lobby of the museum to find out that fact. Poor planning on my part, but I sort of threw that part together last minute. I was hoping the rest of the day would go much better.
I was fully prepared for the appointment, I had my letters of recommendation already in hand — I knew the requirements I would be subjected too. The first part started out as expected; a physical. Height, weight, blood pressure, all the vitals were taken and recorded. Then I was told that they didn’t need any of the letters yet or medical history, and that they would be generating a profile of me for their own records. So, off to interviews with their in house social workers, therapists, etc. Followed up with a donation for blood testing. They want to check if you have any diseases (AIDs, etc.) or if you lied about drug use and other things. At the end of the day, I was mentally exhausted from answering all the questions and being extremely nervous doing so. What if I said the wrong thing to any of these people? I haven’t done anything bad in my life and then you start thinking about that one person I kissed and later questioned their health habits. Is that going to come back and haunt me now? I’ve smoked pot years ago in my past…how good are these tests? I had never been tested for things like this before…what if something bad comes back? Am I going to be refused the surgery I had dreamed about forever? Good thing I scheduled a trip to a bar after….I left there feeling I needed a drink!
I found Stonewall with no problem and managed to get a fairly close parking spot on the street (how lucky was that in NYC?). I had to go in a get that drink and relax a bit, so I went in and found a seat at the bar. It was a two drink minimum, which sounded great to me.
The history of the place quickly enveloped me and I felt proud to be sitting there. Did they know that they would be an inspiration to people like me 50 years later? I bought a tee shirt to mark the occasion…and then looked around at all the people there. The shirt says Stonewall Inn on the front, and “Where Pride began” on the the back. I quickly started a conversation with a gentlemen sitting next to me who was in town visiting from some far off mid-western state. He was gay and told me of his struggles growing up and living there. How he had tried hard to live a straight life and act like everyone expected, but it later fell a part and he and his wife divorced over it. He could no longer hide his feelings or behaviors. The location and reason may had been different, but I could easily relate to his struggles. I explained that my experience was similar; ending with the point where you reach a crisis point and you have to be true to yourself.
We connected and talked for hours sharing pictures of kids and other details. He had dreamed of visiting NYC his whole life and this particular bar. Looking around, I had imagined that everyone in there likely had similar stories to ours and why they had come here. It made me happy that this place existed, not only in the past, but that it was still as active today. There were even some locals, as well, from the neighborhood; as this was just their local bar. The excitement of the place seemed a little infectious. Hours melted by as the conversations extended to others and offers to buy drinks for each other were exchanged. Needless to say, we had no problem exceeding that two drink minimum…which eventually led to a problem. I could have easily spent the whole night there, but I had to get out of there before I would end up having to find a place to stay the night in the city.
It was the perfect stop after that appointment. I got the days feelings off my mind and celebrated the diverse community to which I am a part of by paying some homage to its history. I planned a stop at a Cracker Barrel in North Jersey to have a late dinner and sober up for the long drive home.
Getting the rules of the road…
Nothing much happened in the next 6 months, except for some unnecessary worrying. Everything had apparently went great with that first appointment. The next appointment was to meet with my surgeon for the first time. I was really expecting another world wind set of appointments with the entire staff again…but this was one was much more specific. There were some concerns they needed me to take care of and then there were the ton of dates and requirements I would need to meet. This appointment was much more serious and I was told that if there were any issues…my date would be postponed or canceled.
A friend of mine had a go on a serious diet for her surgery, as her surgeon required her BMI to be at 25 or below. So, as soon as Weight came into the discussion I thought I was dead! I had been hovering around a 30 BMI and was seriously struggling with that. Considering that in the past with other medical issues I was higher than that, I was proud to be at that 30 in the first place. But getting to 25 seamed a near impossibility. Still, I would starve if I had too, but was really hoping I didn’t have to. You can imagine my relief to find out that 30 was their cut off, but they really wanted me to be below it. It was made clear that if I checked in at or over 30…it was going to be a no go.
There were many other details that I was presented with and I was provided with a folder full of instructions to take home with me. (The folder I am holding in the pic.)
A timeline was written out I had to keep. All letters of recommendations and medical clearances would need to be redone and dated to be within 30 days of the surgical date.
The meeting ended with the offer of some surgery dates. One was picked and I had @8 months until my date with destiny! I plugged the date into a countdown app on my phone…which felt pretty awesome, even though the number seemed huge at the time. The fact that it was already counting down was exciting to me…
It was a great day full of worry and excitement, that I was glad to share with my friend Melissa, who accompanied me on the journey. It was Christmas time in New York City and I was already given the best present ever. Still it would be remiss of me not to share some typical pics of NYC at Christmas time pics from that night…
Beginning Months of prep…
8 months may seem like a long time, but I was quickly finding out that it really wasn’t. Nobody does anything without a date and now that I had one, there were lots of things I had to do and get arranged. First things first, was to apply to see what insurance was going to cover and what it would not. I had been in contact with them before about it, but they needed a date, they needed a surgeon; they needed info I didn’t have at the time to move forward.
The company I work for is self insured, but they have Horizon Blue Cross/Blue Shield do the handling for them. However, history had been proven to me time and time again that just because Horizon supports something, its not a guarantee that my companies plan supports the same. The process they had me follow seemed like it was new. Since my company had only recently started covering the surgery, it didn’t seem like they had all the processes in place to handle the processing of the requirements yet. Particularly if someone was requesting a pre-qualification/certification, even though I was told that it was required.
I was sent some generic emails about WPATH guidelines, which seemed ridiculous. If you weren’t already familiar with these, then you shouldn’t have gotten this far in the process. The piece I needed, was mentioned as almost a side note of legal-ease (provided in small text) about submitting a bunch of paperwork for their medical staff to review. That is what was needed in order to be considered for coverage. I called to ask about it and was told that it was only accepted by physical mail. Almost reluctantly, they provided the PO Box to mail it to. So, I put everything together they asked for, and some they didn’t ask for, along with a small cover letter (to explain what it all was for). Stuffed it all in an envelope and mailed it off. I felt like I was mailing away what my future life was going to be like and imagined a bunch of people in a smokey board room somewhere debating my fate.
Lots of things were tied to this envelope…because if they declined, good chance I would find myself not covered for disability from work either. I already knew what the consequences of this were, when I had looked into it before without insurance coverage. It would mean having to take an unpaid leave of absence for 3 months from work. Which, by the way, is long enough where are no guarantees to get your job back or whether you would even have one when you returned. (If they took you back.) Having no insurance or declined insurance has a lot of fingers into other areas and I was sure that they were going to do something to trip me up on some sort of technicality for not dotting an “i” or crossing a “t” somewhere along the way.
I’ve learned to make contingency plans and when I was faced with no insurance at all, I had already came up with a plan to figure out how I could afford the surgery on my own. Going through divorce had taught me about how to decimate a 401K…only this time I would be doing it for myself instead of someone else. Saving for a retirement didn’t seam like a reality when you have already contemplated suicide. Withdrawing the money to support a life saving surgery to be able to actually make it to retirement sounded like a much sounder plan to me. The only thing was, it was now with a more expensive surgeon. I switched to this newer one, with the promise that the surgery would at least be partially covered by insurance if I did so. And if covered, that qualifies for disability and other things; which would make the process less riskier. The change had nothing to do with the surgeons, as I had complete confidence in both their abilities. (Although I liked the prior ones recovery options much better.)
Insurance now on its way to hopefully being taken care of, I started to work on accommodations. Staying in NYC was going to be way too expensive, but I also had to consider a mileage restriction of how close I had to stay near the hospital in the event of a problem. I briefly considered Air b-n-b…but all houses had steps. Some people were recommending single floors or elevators. Things like linen services, and possibly nearby meal options. You have no idea how mobile you are going to be for a while after…so I decided a Hotel would likely be a better choice over the Air b-n-b option. But not just any hotel, I also had to consider others needs as well, like the care takers who would be staying with me. I quickly decided I needed an extended stay/mini apartment type of place and I likely needed it for a minimum of @4 weeks. Narrowing down my search to just these, I quickly found that booking these online for that amount of time was not something you could actually do online. So I started calling places. Looking at floor plans and amenities nearby, budget ruled my decision down from the 5 star options to the more affordable 2 star range. I ended up making a reservation at an Extended Stay located in East Rutherford NJ for a period of a month. (It was cheaper than the week by week rate and was only a couple days off anyway.) The plan was to move in a couple of days before the surgery, and stay there the 3 weeks mandatory post surgery recovery time. That was already at the minimum of 4 weeks, so adding a couple of more days to turn that into a month was no big deal.
Once that was selected, it was fairly easy to locate a pharmacy nearby and set up a temporary relationship with them. Then relay that information back to my surgeon’s contact to add it for their records.
Then I focused on making arrangements for my after care. Being an independent person who doesn’t want to rely on anyone else…this became my biggest problem. The time and travel required for a person to be out of work in order to come stay and take care of me was a much bigger hurdle to get over than I had expected. A retired person I was hoping/that I was relying on to help, who could have also been a stay option, down right refused. They sited some concerns about not being able to care for me. I understood their concerns, but it still hurt a bit and left me with nothing. I quickly burned through my 2nd, third and fourth preferences, as I was hoping other family members would step up to support me. It didn’t happen.
I reluctantly started to look and see if there were outside services available to handle this myself and I did find Nurses of New York. However, I needed more that just the occasional visit, I needed someone to also stay and help out. I found out that that option was available, but of course, it was very expensive. I was not planning on having to need this and again I was watching costs accelerate upwards as the days went by. I was starting to despair and beginning to wonder if I even had the financial resources to cover all of the ancillary expenses associated with it. Being devastated only a couple of years back, and if Horizon BC/BS doesn’t come through, between the hotel, the nurses, and other general expenses….I didn’t know if my savings for it combined with my 401K was going to be able to cover it all. An option began lurking on the horizon that I would end up canceling cause I couldn’t afford all the costs associated with it.
Although I left out some of the details, discussing the dilemma I was facing with a friend, she graciously offered an option I hadn’t considered. She said I should consider splitting up the weeks. If I didn’t mind her working most of the time, she would volunteer to cover at least one of my required 3 weeks. It was a great plan…and told her I would take her up on the offer. Discussing the situation with another friend, another offer was extended. A person I worked with was going to be retiring and figured he as going to have some free time. He and his wife would be willing to help me out as well. How awesome was that? They gave me hope that there was a way to figure out how to get this done.
One major hurdle down, next hurdle to get over was making arrangements for my dog Bella. She was too big and too strong for me to take care of while I was in surgery and recovery. I was informed at the appointment that one wrong pull could rip internal stitches or severely injure myself. This is something I was definitely not thinking of or even knew I had to arrange before it came up during that appointment in New York. I knew I needed to arrange care for her while staying at the Hotel, but I wasn’t thinking 3 months. So, I started researching options. I have a local person I use all the time for vacations and business trips, but 3 months would be asking a bit much and be way to expensive. Boarding isn’t exactly cheap either and discussing the issue with family again provided another series of disappointments. But yet again, this problem was solved when another offer came from a cycling friend who offered to step in. There were some conditions (that my dog had to get along with hers, etc.) but we could work on those…
I was absolutely amazed with the generosity coming from my friends stepping up to help me. I will forever be in their debt! These gestures of kindness started pouring in from all my relationships. They all saw the stress I was under and wanted to help. This led to the building of what I eventually started to call my recovery team. The many people who offered help or who were involved in some way with the process. I started an email chain to keep everyone up to date with what was going on. What was happening, what the schedule was, next steps in the process, etc.
Medical wise, there was really only one thing I had to immediately do. However, I am going to be purposely a little vague about this…even though it seems important to mention. A couple of months prior to the appointment, I had a couple of unique experiences. Going to the bathroom one day, I saw something exit my, little bishop with hat on, and drop into the bowl. It was a small red dot accompanied by a little bit a blood which created this eerie looking creation in the water. It freaked me out and had me thinking all sorts of strange thoughts. I talked to some people about it and decided to dismiss it as a one time occurrence. But then it happened again. This time I wasn’t on a toilet, but when I just happened to be wearing a panti-liner. It caught it…which I discovered on a later bathroom trip. It started messing with my mind, and provided a link to an earlier period in my life where I thought about having internal organs I wasn’t supposed to have…Were they turning on because I had been on HRT for years now? I had to know. My friend who accompanied on the trip made me promise to ask about it and it transitioned into having to visit a doctor to find out what was going on.
And this is where some fun with being trans comes in, having unique medical needs, and the embarrassing moments you have to deal with. It always fun filling out forms saying your not pregnant and when your last menstrual cycle was in the waiting room, only later letting them know what procedure you are coming to see them about. But they were more than professional and supportive about the whole situation. Yes, as a woman, I had to have a scope put up my, little bishop, and find the source of where that blood was coming from.
Turns out, it was coming from my prostrate. While I had been suppressed for years on T blockers, it was likely hiding/delaying a problem that would have been more significant if I hadn’t been on blockers. Testosterone had been irritating my prostrate, something that typically signifies the very early stages of what eventually leads to prostrate cancer. The thought was, since part of the surgery is to remove the offenders causing the problem in the first place (the T makers — testicles) and knowledge that prostates typically shrink up and shrivel up afterwards….the problem was eventually going to go away. So my official recommendation from my doctor was, and I have this in writing, was to “Proceed with lifestyle changes”. Not just a clearance, but an official recommendation to actually get the surgery done. Having the surgery would actually prevent it from progressing any further. That was a bit of a surprise, but the explanation and recommended course of action was accepted by my surgeon. I was seriously concerned finding out whatever this was; was going to be a show stopper…
I did not think that these months were going to be the emotional roller coaster that they were turning out to be, but that is exactly what they were….
To be continued….