Saturday, April 27, 2019

No More Milestones

It is a little weird beginning my first post-mastectomy post where I don't have any milestones to report. I feel like I've crossed the border from being in recovery from surgery to just being out of shape. I decided to stop physical therapy after this week because it was reaching the point where the stress of taking time during the workday to have some college student watch me lift baby weights was outweighing the physical benefit of doing so. My chest strength and mobility no longer seem any worse than the rest of the body, so I'd rather focus on regaining whole-body strength at the regular gym at times that fit my schedule better.

My goal is to eventually work back up to three days a week on the bike, two days in the gym, and one day per week of parking lot skills practice. Last week I managed one day in the gym and three days on the bike. This week has only been one bike ride and no gym so far, although I'm hoping to ride today and tomorrow.

Work has been a nightmare since I came back full-time, and I expect it to remain so for at least 2-3 more weeks. I had planned to accompany Frank to the first West Virginia enduro race this weekend even though I'm not up to racing yet, but I decided to stay home because I was afraid that my workweek next week would be too much after a weekend away from home. I'm not really feeling much better staying home, though, because I'm still stressed about work, but now I'm home alone with no one to talk to or ride with.

I've been having regular sessions with massage therapist with the weird suction cup machine that feels awful but does wonders for my mobility. It's a bit hard because it costs over $100 per session after the tip, and of course, it's not covered by insurance. However, it seems to do more good than most things that insurance does cover, and I should be able to cut down on the frequency of sessions soon.

These treatments have really done a lot help me move better as well as to break up the scar tissue so that my fake boobs are becoming a lot softer and more natural looking. A big goal for me is to get my chest flexible enough to sleep on my side again comfortably.  It seems to be getting there, although it gets better or worse depending on what I've done that day. There's also a chance that the "cupping" could help me get sensation back at some point, although I'm not getting my hopes up too much for that. My plastic surgeon said that 99% of women don't so it will be a pleasant surprise if it happens for me.

Before the surgery, the thought of never having feeling in my boobs again was the most upsetting part for me because, as many really crappy aspects as there are to the experience, that's the only permanent one. Once the surgery happened, everything else that was going on distracted me from worrying about my boobs being numb as I counted down to each milestone until it was over.  Now I've officially passed all of the milestones, and I'm becoming a lot more aware of how weird and dead my chest feels when I bump into stuff. It's tough because I look and seem fine to everyone else, but several times a day I get this reminder that I'll probably never be completely fine again.


Riding is going better, although it's still slow in both pace and progress. I tell people that I'm a super extra special kind of out of shape right now. Regular out of shape is going on a ride that I expect to be easy only to find that it's hard and slow. Then I rest for a couple of days, come back and do the same ride again, and it feels a little easier. With the kind of out of shape I'm experiencing now, I often still feel worse after a couple of days of rest in between rides. It's annoying, but the only thing that I know to do is to keep coming back and doing whatever easy rides I can a regular frequency until they start feeling less terrible.

Aggressive descents are still a bit much for me right now, although my pectoral muscles are not the limiting factor the way I would have expected. It's really all of my muscles that are my limiting factor. So far I've stuck to descents that would have been under three minutes for me last year, and I'm usually 60-90 seconds slower than my PR's. My arms, abs, quads, and glutes start burning halfway through these short descents, which makes it hard to keep going fast. I guess I need to put in some time on the RipRow in addition to the regular gym to try and build up some descending-specific fitness quickly because I don't even think I could get to the bottom of Wildcat or Old Laurel without a rest break right now.

Since my body isn't up for descending the way it used to, I've been spending on more time on the flat or rolling technical trails that I've largely ignored the last couple of years. Even before my body forced me to slow and step back in my riding, I committed to riding flat pedals this season until I was as competent on flats as I was with clips. The fact that I'm slow anyway right now has made it easier to keep that commitment. It's kind of cool because I'm starting to get decent at riding flats on the terrain where they are most challenging. Last weekend, I even made it up a difficult little uphill on Chicken Peter that I'd never made before, even when I was fitter and clipped in.

Although I won't have any more recovery milestones to share in my next post, I hope that I will pass some at work so that I can be a little saner by then. It's even more likely that I will reach some more milestones on the bike considering how tiny those are for me these days. Who knows? Maybe I'll break into double-digit mileage on a ride or something.

Friday, April 12, 2019

Free To Be Me

Yesterday I passed the magic four-week mark after my implant placement surgery. I now have full license to "resume normal exercise", and tomorrow I can officially stop wearing my surgical bra. As we all know, I actually did my first very baby mountain bike ride two weeks ago, and I already wore a wireless push-up bra to work a couple of days this week because my outfit warranted it. I still *want* be wearing my surgical bra pretty much all of the time when I'm not wearing form-fitting or low-cut tops. I was never used to be one of those women who longed for the moment that I could take my bra off at the end of the day, but now anything except the surgical bra gets swapped as soon as I walk in the door.

Despite a little cheating on the rules and a lot of stressing out because the rules were stupid and sucky, yet I was afraid of the consequences of breaking them, it appears that I am no worse off for my indiscretions. At my check-up on Wednesday, my plastic surgeon seemed very happy with how everything turned out and did not accuse me of illicit mountain biking and bra wearing.

I, however, am not sold on how great my new boobs look, but it's hard to be too stoked when my chest is 90% numb, and yet I'm still very aware of the foreign objects embedded in my body. The one silver lining that I'd looked forward to as part of what eventually became a two cup size increase was having cleavage, which so far hasn't manifested. I'm supposed to start massaging them daily to help soften the scar tissue, which should help.

If I really want, in six months I can get fat liposuctioned from my hips and strategically injected into my boobs to improve the cosmetic results, but any fears about needing actual revision surgery seem unfounded. I will have to see how things go the next few months because I don't really want to do any more procedures, but also, hey, free liposuction.

So 11 weeks and 1 day after original mastectomy surgery, I'm basically done from a medical standpoint. Now I just have the rest of my life to make peace with what my body has been through. Since my last post, I started physical therapy again, and that has really helped.

Admittedly, the physical therapist's pep talks are probably the main reason for the vast improvement between my first and second post-surgery mountain bike rides. The first session back, I told the physical therapist about all of the anxieties that I was feeling after my first ride. I explained how I felt like I was okay to start riding, but that I still had a lot of fear about damaging my reconstruction.

Her reply was in line with what I suspected all along, although I had started to let doubt creep in: I shouldn't do anything that hurt, but otherwise, it was safe to start pushing myself within reasonable limits. She agreed that the rules and scare tactics were for "no pain, no gain" types, but since I'm not one of those, I needed to start trusting my body again. Then she took me into the gym and put me through a gauntlet of shoulder exercises to prove that my upper body still worked, even if it is pretty weak right now.

Since then, I've been back to my own gym a couple of times where I'm mixing her upper body routine with various leg, ab, and glute exercises. There are still a lot of things that I'm not ready to do again yet, but I can do enough stuff now to at least start rebuilding my strength and stability.


The combined lack of courage, then lack of time, caused an eight-day gap between mountain bike rides. Luckily, two physical therapy sessions and a trip to the gym in between really boosted my confidence. The second ride I was able to ride a lot more singletrack and a lot more rocks. I even rode some of the short rocky chutes on Brush Ridge, although I went slowly and actually chose a line instead of just charging. I now feel confident enough to ride any of the rocky XC trails around Rothrock, although I'm still not ready for the big descents yet.

***


Unrelated to my recovery but interesting nonetheless, Frank and I are "fostering to adopt" a dog this weekend. His name is Gunner and he is a 1.5-year-old blue heeler, or as my research today concluded, more specifically an Australian Stumpy Tail Cattle Dog. He doesn't have a tail, but it seems 90% likely that he was born without one, and it wasn't docked. So far, Clemmie has responded to him about as well as she responded to Dash and Tutu. She's really not a fan of us bringing other animals into the house but isn't terribly intimidated by him. Dash and Tutu, on the other hand, are terrified and will only the spare bedroom for a couple of minutes at a time. He gets overly excited when he sees the cats, although I think it's friendliness, not aggression, it definitely freaks them out. Hopefully, everyone can learn to live together happily.

Saturday, March 30, 2019

Resume Normal Exercise

The past week has in many ways marked the return to normalcy in my life, but it's also proven that there is no single clear boundary to mark the end of my mastectomy recovery. I returned to officially working full-time this week, although mounting fatigue and a nasty cold meant the last half of it were working from home. I passed the two-week post-op mark on Thursday where I removed the final layer of tape from my incisions and became officially allowed to raise my arms above a 45-degree angle, although I had realistically already been back to blow-drying my hair and wearing pull-over shirts for a week. Likewise, I have two upcoming milestones at the four-week mark: I can switch from wearing a surgical bra 24 hours a day to wearing the wireless bra of my choice, and I can "resume normal exercise."

Could there be any more fraught statement than the latter? Although it is entertaining to speculate into the intent of those instructions, I am 99% sure that lifting weights twice a week and chattering down steep, rocky surfaces on a bike the rest of the time is not what the author had in mind. I also know that there's no way that I'll be able to do that again in two weeks. The question is, when will I be?

I haven't and probably won't bother having that conversation with my plastic surgeon. I don't expect that it would lead anywhere productive, and it would likely only increase my frustration with this situation. As with many so many things in the past couple of weeks, I just need to move on with my life. I restart physical therapy on Monday, so hopefully, that will provide more practical guidance on my path to being an athlete again.

With all that in mind, I ventured onto that path yesterday. I managed to remain sedentary for the two-week post-op period that seems to be the most critical after implant placement, but I decided that I would start testing my boundaries after that was over. I formed this deadline in my mind based on the combination of the two-week milestones from my own post-op instructions and anecdotal evidence from other cyclists who had over-the-muscle reconstruction.* Once again, don't try this at home, kids.

I was at the point where nothing hurt anymore, and although I'm still very stiff and have not yet come to terms with the numbness. Basically, I was at the point where I realized my body will never feel the way it did before, so I wanted to start making peace with how it did feel, rather than sitting around waiting for something that I wasn't even sure what it was.

I like to think Rothrock missed my obnoxious colors.

So yesterday I rode my mountain bike on the easiest trails I could find because I wanted to know how it would feel. We drove to Cooper's Gap and parked at the shale pit. This meant a decently steep one-mile gravel climb, followed by another gentle mile of singletrack climbing before we turned around and descended back again. I had intended to climb the entirety of the Dutch Alvin trail, but when we reached the first intersection, I decided that the two-mile climb was a sufficient test for the first time out.

How was it? Satisfying and a little scary. I'm obviously super out of shape, both in how heavily I was breathing on the climb and the way my shoulders and butt are sore this morning. I tried to be careful not to strain my chest muscles the too much the first time out, which meant that I was afraid to pull hard enough to go over a four-inch log. Afterward, my incisions were a bit irritated from my heart rate monitor, and there were a few tender spots in various areas of my chest, so I decided to wait a few more days before I try riding again.

Although yesterday's ride was proof that I'm a long way from where I want to be, at least now I feel like I'm somewhere.

Also, Specialized had to go and release this Mix Tape edition Stumpjumper while I was at the height of post-op depression, so I was like, "Thank You, Next."

*Side note: If I had one thing that I would do differently about all of this, I would have at least looked into finding a surgeon that was comfortable and skilled in over-the-muscle reconstruction. Unfortunately, the surgeon I used referred to it as looking "like a ball stuffed into a sock," so I did not consider it as a viable option until I spoke with someone who had chosen that option just a couple of days before my mastectomy. Considering my mental state at the time, the conversation spun me into a full-on panic as I worried that I was making a terrible, unfixable decision by going with under-the-muscle reconstruction.

Although OTM reconstruction has a faster recovery time, if I would have pursued a different surgeon in a bigger city, the delay in scheduling my surgeries would have eaten up all of the time saved until now. Right now it seems like I'm "done" just as fast as I would be with OTM, but I'm still a little nervous that the disadvantages will come to light as I tried to rebuild my chest strength in the coming months.

Tuesday, March 19, 2019

What to Expect When You're Expecting New Boobs

Ha! I can only wish that I could give relevant advice on this topic, but it seemed like a good title.

I thought it was time for an update since I was having such a tough time when I wrote my last post. Things actually got a lot worse when I tried to pull a pillow out from behind my head with my left hand while I was half asleep Saturday night and woke up with an extra swollen left boob on Sunday morning. It's already the more problematic side because that's where the cancer was and where the lymph nodes were removed. Frank told me that the doctor had closed up the pocket (space where the implant sits) a bit on that side, so I got very anxious that I had damaged the pocket and that I would have to go through another surgery to fix it. I called the emergency number, and the doctor told me to come to the office on Monday. Then I spent most of the rest of Sunday engaging in periods of panicked crying.

Cats are the one upside to not being able to do stuff. Also, this post needed a thumbnail image.

When I saw the doctor, he didn't seem concerned. He said unless there were bruising or darkness that would indicate bleeding, it was probably fine. I was worried because I can still feel pronounced puffiness when my left arm is flat at my side, but he said that it wasn't a concern right now and was probably something that could be fixed in a few months if it still bothered me.

I felt a tiny bit bad because he was seeing me in between surgeries at his in-office clinic, but I also wanted to resolve some of the frustrating lack of communication surrounding my latest operation. I felt sort of abandoned when I woke up in the hospital on Thursday without having spoken with him in nearly four weeks except for a very brief chat right before I went into the OR. I was left with only confusing second-hand information about how and why things had, at least for me, significantly changed from what I expected going into surgery. So I used the time I had to try and clear up some of the issues that were bothering me.

The white tape is supposed to be "defining the crease" under my boobs for the first week. He said that since I'd already been in once this week and everything looked fine, I could take it off myself on Thursday and that I didn't need to come back again for three weeks. I tried to explain my perspective and how being unexpectedly stuck with something that would double the amount of time that I had to go with showering with no warning or explanation had affected me, but my efforts fell flat.

My takeaway was that I would be better off if the tape remained stuck to me until Thursday, so Frank carefully covered it in waterproof Bandaids, I took a shower, and it did wonders for my mental health. I sometimes think people throw around the phrase "ride or die" a little too casually, but the fact that Frank actually pitched this plan before me may be the true embodiment of that phrase. He really is the best.

Of course, the Bandaids didn't work 100%, and the tape did get a little damp. It dried out within an hour, and it still seems fine now. However, I feel that I should throw in a "Don't try this at home, kids," like the old cartoons used to do.

Most of my stress for the past week can all be traced back to unclear expectations. This was pitched as a very minor surgery to me, and physically, it was. After five days I'm experiencing only the most minor discomfort, and I think a lot of that is actually the tape restricting my movement. The intense burning feeling that I felt immediately after surgery was almost entirely dissipated within 48 hours, and honestly, I think most of my negative physical sensations since then can be attributed more to stress and lack of movement than the actual incisions.

However, my mistake was to interpret the expectation of minimal physical pain with minimal life interruption. What I didn't understand was that the real challenge of this surgery would not be the physical impact on my body, but all of the rules and restrictions meant to help my boobs look good in the end. Since no one really explained the difference between health rules and cosmetic rules to me, it was very frustrating because none of it seemed to make sense.

I want there to be a lesson learned here, especially given the title, but the fact of the matter is that I didn't have valuable information that could have helped me get into the right headspace to make this experience more tolerable. Partly because I'm not a typical plastic surgery patient and partly because of the archetypal disconnect between the medical professional and the patient perspectives, no one understood the need to explain how a minor physical procedure can still cause major life disruption. At this point, yesterday's conversation is as close to "fixing" the situation as I'll get. As stressful as this experience has been, I'm nearing the end, and hopefully, I won't have to face this situation again.

In regard to not facing this again, I mentioned in my last post that I was disappointed when I saw my boobs immediately after surgery. The right one has improved a lot, although the left still looks pretty weird due to the aforementioned swelling that sent me to the doctor yesterday. In the context of the puffiness under my left arm, I was told that I wasn't "allowed to pass judgment for six months." After that, most imperfections can be fixed with fat injections, or in the case of any remaining underarm puffiness, liposuction. And, of course, those procedures would be "even more minor." LOL.

I suppose that is my lesson learned: If and when it comes down to it in a few months, I should meet supposedly "minor" procedures with an appropriate amount of skepticism. At some point, correcting minor imperfections might just not be worth the "minor" procedure. At the same time, by that point, it will be winter again, and maybe I'll be better emotionally prepared to handle it. For now, though, I just need to make it through a few more restrictions, and I'm free to live my life for six months, or forever, as I choose.

Friday, March 15, 2019

#newboobday

Yesterday I reached a significant milestone in my recovery from my double mastectomy when I got my expanders swapped out for permanent implants. At one point I was really excited about this, but as I described in my last post, my pre-op appointment quickly rained on that parade. Things didn't really get better from there.

I struggled through a couple of weeks of part-time work while getting more and more nervous about my surgery. I managed to slip in a couple sunny outdoor rides on the road, which felt like progress except that I knew I was only days away from regression. I was looking forward to the expanders being gone and hopefully perhaps at least downgrading to a chainmail bralette from the iron bra I usually feel upon waking. I was not looking forward to anything else that a second surgery would entail, and it sort of made it worse that I didn't have a clear idea of how bad it would really be.


With the mastectomy surgery, I was in a state of unequivocal dread regarding what I was facing. I steeled myself for the worst experience of my life, and with the exception of the extra days where I was stuck with the drains, almost everything was less bad than I was expecting. This isn't to say that it wasn't still terrible and not something that I ever want to do again, so the fact that my implant swap surgery has turned into even a miniature version of that is finally breaking me.

I woke up at 3:30 yesterday morning and decided that it was unlikely that I would fall back to sleep in the bed again, so I got up and reassembled my pillow fort since I would have to go back to sleeping on an incline for at least a few days. I spent a couple of hours on the couch watching TV and trying unsuccessfully to doze for short periods. Despite getting up so long before we needed to leave, I put off removing my nail polish until the very last minute. It took longer than I planned, and we ended up leaving a bit later than scheduled.

We still arrived a couple of minutes early, which didn't matter because it turned out to be four hours before they actually took me to the OR. During this time, two different nurses tried unsuccessfully to insert IVs, leaving me bruised and bleeding in the crook of each arm. I broke down in tears when the second one chastised me for not drinking enough water the day before surgery, and it really got to me because I'd had a busy afternoon of meetings at work the day before and probably did drink less than normal. It felt almost like a punishment for trying to reestablish myself in regular life again.

They finally took me upstairs, and the anesthesiologist inserted an IV quickly and easily into the back of my hand. After the sweet respite of anesthesia, the first thing I did when I was awake enough to move my arms was to feel my sides for drains. I wasn't supposed to have any, but not finding any was still a relief.

This was before I talked to the plastic surgeon's office and before I knew I had Trump-neck.
I was awake enough to go back downstairs around 3:00. I was already in a lot more pain than I expected, and it took another hour before I was released. The plastic surgeon and his staff were already gone by the time I woke up and had left a somewhat confusing instruction sheet for me. The pre-op instructions said that I could shower after three days if I didn't have drains, but the new sheet said I had to wait until they removed the white tape at my first follow-up. I quickly checked, and yes, I did have white tape that I didn't have after the first surgery. As soon as we left the hospital, I called the plastic surgeon's office to find out that I was stuck with the white tape and no showers until Wednesday.

So that brings me to today. I'm depressed, in pain, and completely dreading the next few days. The worst part is that I have quite a bit of both class work and work work that I need to keep up, so I can't just shut down and do nothing the whole time. I may have overcommitted myself because I thought I'd feel better at this point than I do, and I'm getting so impatient to be a normal person again.

I also took a peek at my boobs when I got home and was pretty disappointed with what I saw. No one explicitly told me not to look, but I think it's not generally recommended to look that soon. I guess I was hoping they would look good and make me feel better, but that wasn't the case. I mentioned to the doctor on multiple occasions that I was worried about my chest looking too wide, and he said that was just the expanders and that he could choose a shape of implant that would fit my body better. However, when I looked yesterday, they looked very low and very wide. They can fix little things like asymmetry or unevenness with fat injections in a few months, but now I'm worried that he chose a shape of implant that just isn't going to look good on me.

Anyway, despite my smiling pictures on social media lately, I'm having a really tough time right now. I know that it really is almost over and this is just a few more days, but I just didn't think it would be this bad.

Saturday, March 2, 2019

Back to Work

It's been a busy week and a half since my last post. The biggest change was that I started back to work half-time this week. I went in on Monday morning because there was a meeting that I didn't want to miss, but I worked in the afternoons for the rest of the week. Despite only being there half-days, it still made my week surprisingly hard.

I tried going to the gym after I left work on Monday, but I was already noticeably tired and only ended up walking one mile on the treadmill. I had quite a few appointments and other things that I had to do in the mornings, so I didn't even try to go for the rest of the week. On Friday morning, I tried riding my cyclocross bike on the rollers for the first time since my surgery, and it went pretty well for the half-hour I put in. I'm going to try to keep up a regular roller habit in the remaining 12 days until my implant swap.

Work itself went well enough, although it was a little weird. Since most of my work is project-based, everything I was working on prior to my surgery was either put on pause or transferred to someone else. Since I spent the week figuring out when the paused work would resume and what new projects I would be starting, it mostly felt like practice going to work again instead of actually working. I guess that's better than coming back to an overwhelming pile of stuff to do immediately, and let's face it, I still needed the practice at getting dressed.

The one other awkward observation that I made was that about 70% of the people at my job don't actually know why I was out, so they don't know what to say to me now that I'm back. There are over 100 people in my department, and the director sent out an email to everyone the first day I was gone but didn't give details. It totally makes sense that he wouldn't have given the details an email to everyone, but I had kind of hoped that more of the people who did know what was wrong with me would have told more the people who didn't while I was out. It's been very weird having people ask how I'm doing, and my not knowing how to answer at the appropriate level detail. I've mostly been defaulting to "Pretty good. I have one more minor surgery on March 14, and then I'll be done." I have no idea if this is helpful or not, but it satisfies my need to explain why I'm going be out again so soon after returning without having to tell the whole story to everyone to whom I talk.

As for the appointments that kept me out of the gym all week, they included my first session of physical therapy, a "massage", and my pre-op appointment for my implant swap. The physical therapy was pretty uneventful, as the therapist agreed that trying to do any substantial work before my implant swap might not be a great idea. So my exercises are mostly just stretching my arm up over my head against the wall or a table. It was good to at least get some professional guidance as to what is and is not okay in regard to pushing my physical limits right now.

As for the massage, someone else who had recently had a double mastectomy referred me to a massage therapist in town who has special training in mastectomy recovery. I went to see him once about 2.5 weeks post-op, but at the time I wasn't healed enough for him to do any serious work except for trying to calm down my angry lats and hips. When I went back on Thursday, it was a much different story. He actually spent about 75% time using suction cup machine to go over all the scar tissue around the edges of my expanders and in my armpits. This was pretty painful and a little scary, but I reminded myself that he had a lot of training and experience with this stuff and tried to trust that he wouldn't cause any damage. It seemed to have worked since when I showered immediately after, I discovered that I could finally shave my left armpit for the first time in five weeks. Although I've been a bit sore since then, the "iron bra" feeling when I wake up in the morning has been significantly reduced.


Finally, I had my pre-op appointment for my implant swap surgery yesterday. It was a little weird having it that far out, but apparently, there weren't a lot of appointments available. It was pretty annoying because it was basically just sitting there listening to a nurse read off the information booklet that they'd given me at my previous appointment, which was 90% the same as the booklet from my last surgery. Since the appointment, my excitement about getting the next surgery done has been dampened pretty badly.

Part of it is a just a generally bad mood from having to listen to long condescending explanations of things like why I can't have gum or mints the morning of the surgery. I don't use gum or mints normally and it's my third surgery in four months. I know the drill. The other part is the anxiety that comes up from having to sit there and listen to someone read all of the crappy parts of having even minor surgery and all of the things that could possibly go wrong. I'm technically supposed to go back to the 45-degree arm restrictions for two weeks after the next surgery, and I'm getting stressed about that. I really don't want to have to take more than a few days off work since I just came back, but I just don't think that arm restrictions and physically going into the office are compatible.

In general, dealing with the plastic surgeon's office is so much worse on so many levels than it is with my surgical oncologist's office. It might have something to do with the majority of their patients being there voluntarily, so they're less understanding about how hard it is when you didn't choose the implant life, the implant life chose you. The doctor himself is nice, and as I've said before, he's known for his good work, but often the way that they do things is making an already unpleasant experience even worse.

All I can do at this point is hope that the next 12 days go by quickly and that everything goes right instead of all of the things that can go wrong. The two big milestones to which I'm really looking forward are waking up from the surgery to the news that everything went well and when the two-week post-op period is finally over. I'm getting very anxious to move on with my life.

Wednesday, February 20, 2019

The End Is In Sight


I got two surprises when I went see my plastic surgeon on Monday. The first was that I told him that I was debating on whether I should get another 50 ml added to my expanders, so I asked for his professional opinion. I somehow walked out with 100 ml added. That surprise was weird, but admittedly my boobs looked better when he was done. Of course, expanders are meant to be temporary and therefore inherently don’t look that great no matter what, so I might have been fine just living with them the way they were for a while. That being said, I'm getting used to the idea of being "busty" now.

Every time I think about getting implants, I think of this meme. Hopefully, my results are more convincing.

The second, and more definitively positive, surprise is that I will only be living with the expanders for 22 more days. After he added the extra 100 ml, I assured him that I was definitely done filling at that point. He told me that if that was the case, I could go ahead and get my permanent implants in “one week to whenever”. March 14 was the first opening at a hospital that took my insurance, but the extra time is probably good for the bruising and swelling from my first surgery to clear up a bit more.

This means that I am still three weeks ahead of the absolute best case scenario that I could have imagined when I set out on this journey. Heck, I’ll have six weeks between getting my implants and the first WV Enduro race. I’ll almost definitely be riding in some capacity at that point, but I’m not sure how well, so we’ll see. A friend asked Frank if we wanted to split a rental house for that weekend around the time I was diagnosed. I told him to go ahead and say yes, because it would still be nice to see everyone, even if I had to watch from the sidelines. At this point, it looks like I’ll at least be able to pre-ride the course on Saturday, even if I don’t have the energy to actually race.

The only slight downside to my second surgery being so soon is that it falls during the week that I had planned to come back to work full-time. In a way that is annoying, but I guess it’s maybe better than being back for a few weeks and really starting to build momentum, only to have to take time off again.

I’ve still only worn real shirts a couple of times so far, and with the exception of the one slightly loose button-up shirt that is my own, I’ve still needed Frank’s help dressing and undressing. That makes me a little nervous in regard to going back to work, but I’ll manage somehow. Wearing real clothes again also means wearing a real bra again, although “real” is still relative. So far, I’ve kept wearing the thin white cotton front-closure bras with Velcro straps that I got in the hospital, but I’m trying to find something that looks better under clothes that aren’t baggy men’s shirts. 

All of my old bras are too small, and I couldn’t wear them because they have underwires, anyway. Per the measurements that I took yesterday, it appears that I have gone from a 32C to a 32DD. This isn’t as extreme as it sounds, because cup sizes are not universal across the board, rather they are a function of the difference between your bust measure and your rib measurement. My ribs aren’t that big, so another few inches above that still isn’t that big. It’s been interesting shopping around for something that will get me through a couple of weeks of work, but won’t become obsolete with the continuing changes that will happen over the next few months. I ended up ordering two colors of “The Busty Bralette”, which will hopefully accommodate some size and shape variations until everything is settled.

I saw my surgical oncologist today, and it will be my last appointment with her for six months. She gave me a referral to start physical therapy, which I will begin next week. Although I probably won’t be able to accomplish a lot in physical therapy before the next surgery, I figured that getting my chest muscles even a little looser beforehand will probably make things literally and figuratively smoother. I’ve really been pleasantly surprised with how quickly everything is wrapping up. I still have some anxiety about getting back into shape, and whether I’ll be able to ride as aggressively as I did before, but I’ll cross that bridge when I get there.

Saturday, February 16, 2019

Small Victories

Progress has slowed, or at least become less noticeable, since my last post. After passing most of the big post-mastectomy milestones in the first couple of weeks, the wins have become smaller, but still important. I’ve started driving myself on short errands around town, and I’ve started doing a few small household chores. I’ve blow-dried my own hair a few times, and even did full hair and make-up to have lunch with a friend yesterday. I was even to get a regular t-shirt and sweater over my head with Frank’s help after three weeks of exclusively wearing his snap-up Sombrio shirts that are way too big for me. I’m basically to the point that I can more or less function as a normal person, but doing so is still incredible difficult and exhausting. I have nine days before I go back to work half-time, so I’m hoping that I’ll be doing better by then.


I’ve been to the gym most days since my last post, and I’m up to walking three miles on the treadmill in about 48 minutes. Yes, I’m still me, so I have to try to go further and/or faster every workout. Because I can’t comfortably swing my arms in race-walker style, or even let them hang loose for long periods of time, it’s a fun challenge to see how fast I can go while still holding on the little HR monitor handles for stability. It requires a lot of concentration to focus on a strong core and quick, precise turnover without bouncing or swinging my arms. After walking, I’m playing around a little bit to see what else I can do, but it’s still not much. Basically, I can do crunches on the incline bench or split squats with no weight. I tried out the belt squat machine today, which I was able to do with Frank there to help load the weight for me.

I also have to steal Frank's full-zip jerseys for the gym to avoid over-the-head clothes.

I think the thing that is surprising me the most at this point is how well I’m doing emotionally. Admittedly, I’ve hit the sweet spot where the really hard/gross/painful part is over and I’m living a life of (slightly immobile) luxury: sleeping 9-10 hours a night, going to the gym at my leisure, and generally not having a lot responsibility. I’m still taking an online class this semester, so I still have to try to muster a couple of hours of concentration every afternoon, but it’s not too bad. I’m a bit worried about how well I’ll handle dragging myself through work with a stiff, awkward, exhausted body that may or may not still fit into most of my work clothes.

However, if I think back on the fact that I literally lost part of myself three weeks ago and how terrified I was beforehand, I’m amazed at how well I’m doing. Maybe I got all of my mourning out before my surgery, because now that the brutal part is over, my feelings about losing my boobs have gone from utter devastation to occasional moderate sadness. I feel occasionally annoyed that my body doesn’t work as well as I want it to, and anxious to get my permanent implants so that I can move on with my life. I’m way more interested in my reconstruction than I imagined I would be, too. Since they’re really just there for looks at this point, I guess I want them to look good, so I’ve spent a lot of the last week staring in the mirror trying to decide if I want that extra 50 ml or not.

I said before my surgery that people learn to be okay with most anything once it’s happened, and that’s been the case for me, as well. Something really terrible happened to me, but I got through it. Now I’m trying to maximize what I’m left with once it’s over (and not just in terms of filling expanders). At this point, I’m really glad that I have shared my feelings of this at every point along the way. As weird as it is, the terrified and devastated me from a few weeks ago and the surprisingly chill me of today are both important parts of my experience. I’m sure there are more hard time to come, but for now I’ll just enjoy my last nine days of freedom.

WTF Are Expanders?

I started writing a regular post, but I realized that I was making a lot of reference to expanders and implants, and that I’ve never actually explained breast construction on this blog. I’ve had enough questions from friends to realize that a full explanation might be in order. So I’ve decided to save the update for tomorrow, and instead tell readers everything they never really wanted to know about breast reconstruction. If nothing else, it will make my posts over the next few weeks make a little more sense.

There are two basic types of breast reconstruction: implants, a concept with which most people are familiar and “flap” reconstruction, which uses fat and skin from other parts of the patient’s body to form a new breast. I don’t know a ton about the flap reconstruction option, because it was never really even pitched to me as something that I should consider. I believe it is mostly employed by patients whose original breast skin can’t handle implants due to removal or radiation. Although it can yield more natural-looking results and has a better potential for some sensation returning, it requires additional surgery on other parts of the body to get the donor tissue and that did not sound like something I wanted to deal with.

I am having the most common type of implant reconstruction, which is a two-step process. During my original surgery, the surgical oncologist took out the breast tissue, a few lymph nodes from the side where the cancer was, and biopsies from behind the nipples, leaving all of my breast skin in place. This was done through 3-4 inch incisions in the fold under each breast which should fade and become unnoticeable in a year or so. Before I was closed up, the plastic surgeon came and created the “pocket”, which would become the infrastructure for my reconstructed breasts. This included inserting temporary implants called expanders, which are filled with saline over time.

In my case, they were placed under the pectoral muscles, which is why my arms are in such bad shape now. In some cases, over the muscle placements are done, and the recovery time is a lot faster, but my surgeon said that he prefers the results of under the muscle placements.

Because of the trauma to my skin, the expanders were left completely deflated for the first six days after surgery to make sure that I had good blood flow to my skin and nipples before the expansion began. This is why the two-step process is more common than complete reconstruction during the mastectomy. Unless the patient is wanting their reconstructed breast size to be smaller than the original, it is unlikely that their skin can handle a full-size, permanent implant being placed at the same time as the mastectomy surgery.

For patients using the two-step process, saline is added to the expanders in the weeks after the surgery until the desired size is reached. How quickly this is done depends on how healthy the skin is and the size to be reached. I have now had my expanders filled twice, and now they are somewhere between 10 and 30% bigger than my original breasts, depending on how one counts. I still have a lot of swelling in weird places and the expanders are a lot stiffer than the implants will be, so it’s hard to imagine what the final result will look like. I’m planning on discussing this with my plastic surgeon on Monday, and I may or may not get a smidge more saline added, depending on what he says.

After Monday’s appointment, I’m expecting to have permanent implants placed in about 4-6 weeks. Once again, the length of time between the final fill and the second surgery varies from person to person, depending on things like the health of their skin, if they are trying to get significantly bigger than before, or if they require other treatments like radiation or chemotherapy. Everything is looking good so far for my having a relatively short wait time, although we still not close enough for my doctor to commit to actual surgery date yet.

The second surgery should be a lot easier than the first, because as my doctor said, “The pocket is already there.” It’s just a matter of reopening the incisions, pulling the expanders out, and putting the permanent implants back in.

I’m looking forward to having the second surgery, because then it will finally feel like this is really, really over. There is a chance that the surgeon might want to do some minor tweaks six months after placing the implants, but that really just comes down to how everything looks at that time. If another surgery is required, it should also be pretty minor and it will be in November or December, which is the least bad time to be sidelined from riding for a couple of weeks. However, I’m really hoping everything looks good, and I don’t need any revisions in the future.

Thursday, February 7, 2019

Just Waiting for My Arms to Work

I finally got my drains out on Monday and was able to take a shower. In my eagerness to take a shower, I forgot how hard it would be to actually do so. I technically wasn’t supposed to lift my arms above a 45 degree angle until today, although I’ve been using comfort as my guide rather than carrying around a protractor to confirm that I’m not lifting my arms too high. I’ve still been very careful, and if a movement feels weird or tugs even a little, I back off. However, this has still resulted in much better arm mobility than I’m “supposed to” have at this point. Better than I’m supposed to have still only means that I can kinda sorta barely reach the top of my head to wash my hair.

Embracing my natural hair texture until I can hold up a blow dryer again.

I think this is a case where my athletic background may have really helped me. I'm sure the 45 degree rule was based on some sort of conservative average for women with a wide range of ages and fitness levels. Because I'm used to making judgement calls about how hard (or not) to push my body, I felt comfortable safely observing what my muscles were capable of within the context of the 45 degree guidelines. I suspect that whoever wrote those guidelines saw too many cases of "no pain, no gain" go badly. I'm lucky to live within the mindset of "test your limit, recover, then test it again". I hope that this means that I will continue to make rapid progress over the next couple of weeks.

Tuesday turned out to be the first day that I was home alone while Frank taught since the surgery. He only teaches Tuesdays and Thursdays this semester, and his mom was with me the first Tuesday, and then classes were cancelled last Thursday. The temperature was nearly 60 degrees, so I used my newfound freedom to walk to a coffee shop a mile away, get tea and a muffin, and come back. Since walking is really the only exercise I can do right now, I’m trying to work up to an hour a day, but that first outing really took it out of me.

Yesterday I finally got my pathology results back, and they were more or less what I suspected. Nipple and lymph node biopsies were clear, as well as all of the breast tissue margins. This means that I won’t require further treatment like radiation or chemotherapy. I didn’t expect that I would, but it’s nice to have confirmation. They did find two previously unknown spots of DCIS in the left breast, once of which was in a different quadrant, which confirms that the mastectomy was the right choice. If I’d gone with just a lumpectomy and radiation this round, I would almost definitely would have still had to have a mastectomy in a few years when the DCIS in the other quadrant got big enough to become noticeable, and I probably wouldn't have the option to do reconstruction with an implant at that point.

So now I have entered what I am calling my “Just Waiting for My Arms to Work” phase. The worst parts of the recovery are over, and I still have about 2.5 weeks before I go back to work part-time. This will be my time to get back to the point where I can do things like put on clothes that are men’s sized snap shirts, style my hair, and drive. It will also be my time for getting my endurance back to the point where I can do all of those things back-to-back without total exhaustion. I was warned that fatigue would be pretty bad a few weeks in, and now it is really making sense. It wasn’t that tiring when I couldn’t do anything, but now that I’m beginning to be able to do stuff, I'm realizing how tiring doing stuff is. Luckily, I planned for this, and I have the time off from work that I’ll need to rest and recover.

Saturday, February 2, 2019

Drained

I am now on Day 9 post surgery, and it’s not pretty. However, I will begin with the good news: First, it appears that looks like my nipples will live. Next, I just realized that I haven’t had pain meds of any sort since bedtime last night. Finally, I got 190(L) and 155(R) cc’s of saline put into my expanders on Wednesday, so I now have ~60% boobs again, although they are still very weird looking between swelling in my armpits and blue ink drawing all over them that I can’t clean off yet. I’ve maybe even begun researching what different size implants actually look like. I can never stress enough how the implants are no substitute for my real boobs, but I guess I’d rather have something than nothing. I’ll admit that I’m at least curious how a little bigger would look since I’m doing it anyway.

When you're so bored you start sexting pro enduro racers.
It looks weird, but the Bandaid is just covering the saline port,
nothing more exciting than that.

As for the downsides, after more or less losing count of the number of Percocet that I was downing the first week after surgery to manage my pain, I finally got fed up with the associated constipation on Thursday and quit cold turkey once I was allowed to begin ibuprofen again. Ibuprofen isn’t allowed the week before or after the surgery due to bleeding risk. At first quitting the Percocet seemed relatively easy considering that opioid addiction is such a massive problem in the United States today. However, I have noticed that since I stopped, that I’ve gone from being amazingly patient with my situation back to my old irritable, anxious, depressed self again. It’s probably partly the drugs and partly the fact that despite my decreased pain, I’m still so far off from normal life again.

The bane of my existence right now are the surgical drains which will not come out until Monday at best. Most of the women I talked to only had theirs for 6 or 7 days, so 11 seems excruciating for me. I can’t shower until they’re out, they dig into my sides, and I’m tired of having pouches and tubes in the way whenever I go to the bathroom. The benchmark for getting the drains out is less than 20ml of output over two days, so I’m already in the measurement period if I want to get them out on Monday. I can’t do much to affect this except be as still as possible and hope.

I have been super self-conscious about my pale skin and dark body hair since I was a pre-teen, and there are only a handful of times in the last twenty years that I have gone to bed without freshly shaved arms and legs. No matter where I am or what I’m doing, I find a way to make it happen. It’s probably my biggest barrier to doing one of those big multi-day stage races where you have to sleep in a tent between stages. The only other big break I’ve had was when I had my pancreas surgery 8 years ago, and I was in the hospital for a week. I still managed to shower and shave before I went home. Knowing this, you can maybe start to understand what 11 days without a shower is doing to me.

Yesterday was especially tough for me because one of my drains has been leaking, and despite being redressed at my appointment on Wednesday, it was still soaking through to my clothes by Thursday evening. I went back to the doctor on Friday with the hope that they’d just pull it since basically nothing was making it into the drain tube anyway, so what’s the point? Rather just ending my misery, nurse sat there yanking on it for 10 minutes until she came up with 25 ml of new fluid in the bulb. By this point I was bawling my eyes out because it feels so hopeless and out of my control, and all she did was stand there and say a bunch of condescending bullshit about “magic numbers”. I can’t explain how it feels when a person has the power to make a little piece of your nightmare a little less nightmare-like, and they absolutely give no genuine forks regarding your misery.

As angry as I am at her right now, I should pause and acknowledge people who actually have tried to make my suffering a little less. My regular hairstylist washed and dried my hair on Monday for free, and when I posted about how excited I was on Instagram, another friend got me a gift certificate for another blowout, which I got yesterday. I also gave in and took a sort of crappy waste-down bath and shaved my arms and legs yesterday, so I feel a little better. However, the drains are still the biggest barrier between me and normalcy right now, and the thought of having to get through 48 more hours with them is killing me.

Finally, I wanted to mention the whole numb boobs thing since was one of my biggest fears before the surgery, and now I’m actually experiencing it. It was less noticeable before they filled my expanders because my chest was flatter and the fact that I was in so much pain masked the fact that I couldn’t feel anything else. Now that I’m in less pain and have something protruding from chest, it’s really confusing. I have a sense that my body is taking up more space, but a really bad sense of where that space ends. When I hug Frank I get nervous because I can’t tell if I’m pressing too hard or not at all. Since they added the saline, everything feels pokey and pully when I burrow into my pillow fort at bedtime, and then I wake up several times each night unable to feel any of the skin on my chest, in my left armpit, or down the back of my left arm. It still scares me every time because I feel like there’s something wrong like the circulation being cut off to those body parts, although I’m coming to realize this is just the new normal. I’m starting to be less compulsive about shining a light down my shirt every time I wake up to confirm that everything still looks okay, but it’s just really scary when you can’t tell if you’re okay or not from feel.

I’m hoping that this weekend is the low point in my recovery, and that things start to look up once the drains are out. I want to start doing more than just laying around hoping to minimize the how much fluid comes out of me. My plan has always been to start walking on the treadmill at the gym once my drains are out so that I can at least get some exercise even if my arms don’t work. I think it will make me feel a lot better once I can do that.

Sunday, January 27, 2019

First Update

Once again, I thought I’d wait a little longer before making an update, but I find myself with a lot of free time on my hands and not a lot of range of motion in my arms. I pretty much have my bed pillow fort for night and my couch pillow fort for day, and I can only leave those for short periods of time to use the bathroom or maybe sit at the kitchen table to eat. I’m already getting pretty bored, so I decided to see how I did sitting at the computer for a little while.

I successfully made it through my double mastectomy on Thursday and stayed in the hospital until 5:00 on Friday. I lost enough blood that they were on the fence about giving me a blood transfusion and they were not able to put any saline into my expanders during the surgery because the blood flow to my nipples was iffy, but I would call these pretty minor setbacks in the grand scheme of things. They didn’t do the blood transfusion and just watched me in the hospital a bit longer than planned. I have to have nitroglycerin cream put on my nipples every few hours to encourage blood flow, but it seems to be working, and they look healthy now. Hopefully, they can start filling my expanders on Wednesday. The only other issue I’ve had is swelling in my arms and legs, but it’s not too terrible.

It melted my heart to get flowers from the other WV Enduro ladies before I even got home from the hospital.

I’ve now spent two nights at home and my main issues are pain management and boredom. The pain is actually worse than I was expecting, because the women I talked to made the actual pain part seem not that bad. I’m definitely struggling with it, and I’m maxing out my allowed pain med dosages. I look and smell terrible, but I’m not feeling well enough to care yet. My first shot at a shower is Wednesday, if my drains slow down enough to come out by my first check-up with the plastic surgeon. I will hopefully also get my pathology results that day. I’m not too worried about those, but it will be nice to have 100% confirmation that I don’t need any other treatment.

Frank has been amazing at doing all the annoying little things that I need done like handing me anything that isn’t within my very limited range of motion, helping me in and out of bed, changing my drains, and putting on my nipple cream. The dude definitely deserves an award for this, but so far the best I could do was encourage him to go out for an hour when they tapped a new keg of Hopslam at a local bar. His mom is also staying with us, so she’s been able to back him up if he needs to leave the house.

So that’s where I am three days post-surgery. I hope to give some good reports regarding drains and pathology later in the week.

Saturday, January 19, 2019

This is Happening

Before I met with the plastic surgeon on Wednesday, I went back and reread my last post. I was surprised by how much more at peace I felt just a week and a half after writing it. I went through so much emotional change in such a short period of time. When I wrote my last post, it was definitely beginning to seem like a double mastectomy was what I should do, but I really wasn’t ready to face that yet. I still don’t know that I am, but it’s happening this Thursday.

Before coming to this conclusion, I went through one more angry, rebellious period where I was willing to do just about anything to save my boobs. I was pissed because DCIS is such a stupid, tricky little disease, and no one could tell me how dangerous it actually is. Although one must take internet research with a grain of salt, it seemed as if a lot of the problem with DCIS research is that it’s really skewed by older women for whom it showed up on a routine mammogram, and this seems to be the population for which it is a lot less dangerous. Apparently women with palpable lumps have a greater chance of future invasive cancer than those who just found it on a mammogram, so it's hard to guess the future for a 38-year-old who has had two palpable lumps in two years.

Speaking of invasive cancer, if I have to look back and point to one moment that really sealed the deal for me, it was an Instagram post from another cyclist who recently had a double mastectomy. I don’t know her, but a friend referred Frank to her IG account when I got my diagnosis, so I’ve been following her progress. Her case is pretty similar to mine, except that her cancer was just a smidge more aggressive/advanced than mine, but luckily still very small in size. When I saw that she’d recently found out that her margins still weren’t clear after her mastectomy and would still need radiation, it was the final push I needed to cash out of the cancer casino as soon as possible.

This is so much better than a pink ribbon.
I quickly went from willing to take some big, unconventional risks to “Fuck, fuck, fuck, get it out before it gets any worse” in a few days. I think a lot of women jump right to latter immediately upon getting their diagnosis, regardless of the severity. Although it’s caused me a lot of emotional turmoil, I’m glad that I fully embraced every possible option before coming to my decision. I’ll admit now that I even went through a phase where I fantasized about getting an RGB Dissent Collar  underboob tattoo once my reconstruction is done to symbolize my personal dissent in regard to the lack of options for women with DCIS. Who knows? I still might do it.

For now though, I’m just coming to terms with the fact that all of the gnarly things that I outlined in my last post are about to become my real life. I’m also terrified about unlikely but possible complications like losing my nipples or having to have unplanned radiation like I mentioned above. At this point, my biggest concern is just getting past those milestones safely.

Of course, when I’m not freaking out about that stuff, I am also concerned about when and if I’ll be able to race bikes again. Barring unforeseen complications, the current estimate is that I can have my second surgery about 12 weeks after the first, and then maybe a couple more weeks to heal from the second surgery. At that point, I should be cleared to return to “normal” life, but I don’t know how long it will actually take to get back to my pre-surgery self. Fatigue and poor recovery are things that I have trouble with already, so I can’t imagine they’ll get any better after this. Pectoral muscles are also kind of a big deal when it comes to rough, aggressive downhill riding, so there may be a big time gap between being “able to ride” and being able to ride the way I want to. On top of that, I’ll now have the extra worry that if I go crash and slide several feet on my chest across rocky terrain as I did at Blue Mountain last summer, I’ll now pop an implant instead of just having a few scrapes and bruises that heal in a few days.

A big thing for me lately is wanting to talk to an enduro or downhill rider that has successfully recovered from a double mastectomy with reconstruction and made it back to the level at which she was riding before. It scares me a little that I’ve done a lot Googling and put feelers out through a few channels and still have come up with nothing. I realize that although female gravity riders and mastectomy survivors both seem pretty common in my world, that they are both still relatively rare in the general population. So maybe it’s just a problem with how those small population cross over in a Venn diagram. Regardless, if you’re reading this and know someone who fits the description above and is willing to talk to me, please send them my way. Otherwise, I suppose my posts over the next few months will be here for anyone desperately searching for “downhill mountain bike mastectomy”, “enduro mountain bike mastectomy”, or “park rat mastectomy” as I have been lately.

Okay, never actually tried the park rat one...

I’m going to try and keep up with at least bi-weekly posts over the next few months to track my progress towards what I hope to be a glorious comeback. This should help to keep me motivated and hopefully continue to shed a little more light on this journey for anyone else who has to go through it or wants to support someone going through it.

Saturday, January 5, 2019

Mastectomies Are Bad, Mmmkay?

We’re going down, down in an earlier round
And Sugar, we're going down swinging
I’ll be your number one with a bullet
A loaded God complex, cock it and pull it

I thought I’d wait until there was an official decision and surgery date scheduled before I posted an update on my boob situation, but that still won’t happen for almost three weeks. As I alluded to in my last post, a thing that is really getting to me about this experience is how much is missing from the “breast cancer” narrative of the collective conscience. I don’t want to say inaccurate, because everyone’s experience is different, but I guess I’m just not seeing myself reflected popular breast cancer culture. Haha. Although I’m mostly writing this to work through my own feelings, it can’t hurt to inject one more perspective into the collective understanding of what I’m learning is a terrible and way too common experience.

Since I found out about my second DCIS recurrence a few days before Christmas, I have done a lot internet research on mastectomies and chatted with a couple of acquaintances who have recently gone through the procedure themselves. My conclusion is that no one who hasn’t gone through it themselves or at least faced it as a real and imminent choice they had to make (none of this “if it happened to me” shit), grasps the gravity one takes on when they accept a mastectomy as their choice. Because many people who make that choice are faced with a much graver second option, the consequences of the choice are often glossed over to everyone but those closest to them. I’m sure it’s easier for some people than others, but a lot of people to whom I mention the choice that I’m facing seem to think it’s not that big of a deal based on what they’ve observed from a friend or relative. I’ve heard way too many flippant comments about “getting new ones” the past few weeks.

Below are some of the parts of the experience that I don’t think most people realize unless they have been through it or are intimately close to someone who has. I didn’t include the universal “surgery is scary and painful” on my list, because I think most people know that part, but it’s a thing on top of everything else.

1. The surgery cuts the pectoral muscles, which means limited arm strength and mobility for many weeks or months after the surgery.

2. Dealing with surgical drains, not being able to shower or wash your own hair for a week or more.

3. 4-6 weeks off of work from the first surgery.

4. If you’re able to keep your nipples through the procedure, they may still die and have to be removed within the first few weeks after surgery.

5. Even if the skin is preserved and the breasts are reconstructed, there is a high likelihood that they will never have sensation in them again.

6. Reconstruction will require at least a second surgery. This won’t take place until at least three months after the first, extending the overall time it takes to get back to “normal”. I’ve heard conflicting reports on the recovery time for the second surgery, but we’ll say somewhere between 2 and 6 weeks for now. I’m hoping to get an estimate specific to me on January 16.

7. Reconstruction is not necessarily a one and done thing. “Revisions” may be required, especially in situations like mine where I could be likely be stuck with the “new ones” for 50 or so years, which is way longer than I’ve had the originals.

I know each of these points can be range from a minor to major deterrent, depending on an individual’s tolerance, and that people tend to learn to be okay with most things once they have happened. I also know that some of this can be avoided by opting out of reconstruction, but to do so adds a whole new layer of feelings with which an individual has to make peace. For some people that’s the right choice, and for some it isn’t.

Not to be all “fuck the patriarchy”, but what if it were common for cis men to have to cut off their penises and replace them with fake ones that have no sensation? Would they have to listen to asinine comments about how they can make the new one bigger? Or would the subject be treated with a lot less frivolity?

All of this is to say, “Mastectomies are bad, mmmkay?”

My alternative to having a mastectomy now is to have a lumpectomy plus radiation plus hormone blockers plus have a very expensive MRI every six months for the foreseeable future. The one caveat of all of that is that it really, really has to work, because a third recurrence means a mastectomy at a later date with even more limited and gruesome reconstruction options. Over Christmas break, I came to the conclusion that my desperation to keep my boobs was strong enough that I was willing to take that chance if I could get some assurance that the odds were in my favor.

After a conversation with the radiologist who has followed my case from the beginning, it really sounds like they are not. I have more than a 100 small spots on my MRI that could be DCIS or not, and it’s impossible to biopsy each one to find out. We’re all heard the term “death by a 1,000 cuts”, so “death by 100 core biopsies” would probably equate to a really brutal mastectomy in and of itself. She’s going to do one more MRI-guided biopsy to get a better read on the situation, but the more I think about it, I’m not feeling good about the odds that each of those unbiopsied spots is benign, or that the radiation will wipe out any and all microscopic DCIS cells in there. So as I was having my 3 a.m. “spontaneously wake up and freak out about things” time yesterday morning, I decided that it was important that I document the reasons I was so desperate to keep my boobs beyond just all of the mastectomy downsides that I listed above.

I will begin with a bonus explanation of how Taylor Swift came to become such a major source of my song parody material. I never listened to pop radio and had heard surprisingly little of her music until the day before my 32nd birthday, when I lay in bed scrolling through the interwebs before getting up. I came upon an Buzzfeed article called something like, “Why Taylor Swift Hates Hipsters” with clips of her videos as evidence. Much of the case was built on the song, “22”, and upon hearing the lyrics, I felt incredibly, unfixably old. I somehow rebounded to the decision that I was not “unfixably old” rather quickly, and it led to what some would call a midlife crises, except that it resulted almost completely in net positive effects on my life. I quit binge eating, got in the best shape of my life, ended an unhappy marriage, met Frank, moved to State College, got a way better job that I’d ever had in Bloomington, and learned how to actually mountain bike after years of just pretending that was what I was doing.

I spent my teens and early 20’s feeling as though my body mostly only existed to try and make dudes happy, because achieving a long-term heterosexual romantic relationship was my primary objective in life. I can’t really explain why now, because it seems so dumb in retrospect, and I could have done so many more cool things with my life without that distraction. The worst part is that I don’t think I actually had much deep-seeded confidence in what I to bring to the table for the relationship I so desperately wanted, so I was always just trying to be good enough and “hot” enough with no real sense of self. When I finally found someone with the same “need to be coupled up now and you seem acceptable enough” priorities as me, I settled down and eventually became exhausted with trying to be good enough and hot enough. This led to a few years of becoming an asexual being for the first time since puberty. Although I still cared about how I looked, it became more about my own enjoyment than that of other people. Part of realizing that I wasn’t “unfixably old” was realizing that I was still too young to be asexual forever. In my own mind, I became “hot” again, but now I was an adult, and my body was for me. My relationship with Frank has never been about performing or trying to be something that I am not for him, although I am thankful every day that he seems to appreciate what I have to offer in all of my forms.

Nevertheless, six years later I sometimes feel like I’m on the brink of “unfixably old” again. Despite everything I did to create life that is objectively better than the old one on all fronts, I still struggle with depression, binge eating, and just generally dealing with the weight of normal everyday life. Having a better job made me realize that I actually had talent, but that caused my forks given to exceed that talent (or at least others’ recognition of it) much too often in the last couple of years, because the equation doesn’t just apply to cycling. My crazy, head-spinning, butterflies-in-stomach Internet romance has evolved into a stable, long-term relationship where we love each other deeply, but living together as functioning adults has made our priorities a lot less exciting than they used to be. I gained all of the weight back and then some, and somewhere along the way, the lines around my eyes got a lot more noticeable, and no skincare product seems to turn the tide.

All of this has made me realize that no amount of fixing my life will ever be enough, and I need to work on being happy with my life however it is. I’m sure that I’d heard that at many times earlier in my life, but I guess I just needed to perform a really grand experiment to understand. Now I understand, although I still have a lot of work to do on actually putting it into practice. I’m still struggling to find the balance of putting an appropriate amount of effort into doing well at work and getting better at bikes without pushing myself to point that I’m resentful if the outcome doesn’t meet my expectations. At the same time I’m trying to reduce the amount of effort I put into chasing things, I’m trying to repurpose that effort into appreciating the good things in my life that I don’t want to change and giving them more attention.

This is why the imminent possibility of losing my boobs is especially, brutally, devastating for me right now. I feel as though I’ve only had a few years of having my body as my own, and I probably didn’t appreciate it as much as I should have during those few short years. I think it will be very hard for me to not feel asexual again if I lose them, and I feel like I’m still too young to go back into that hole.

Coincidentally, a few days before my diagnosis, I was listening to a Science VS podcast called “The Science of Being Transgender”. I’ve pretty much always been of the opinion that consenting adults should be able to do whatever they want to each other or themselves, as long they aren’t hurting anyone who isn’t consenting or isn’t an adult. However, I could never fully wrap my head around the idea of feeling so out place in the body in which you were born that you want to surgically alter it, because surgery is universally scary and painful. I’ve just accepted that some people do feel that way, and that it has to feel more painful than the idea of surgery, so I want to do what I can to help them feel better and not worse about that. Anyway, the podcast said something about how all people have some inherent thing in their mind that tells them, “I am (blank)” and that for some people, the disconnect between that thing and their bodies causes them great distress. Although I will never fully understand that experience, a few days later when I had to face the idea of losing parts of my body that are so strongly connected to the thing in my head that says “I am a woman”, I could better imagine the equal and opposite reaction of someone feeling that something about their body is definitely not supposed to be there.

A lot of the Headspace meditations that I’ve done lately have included something to the effect of, “You are not your thoughts. You are not how you look. You are not what you do.” Part of learning to be happy in the life that I have might have to be the realization that I don’t have to feel asexual because I have lost my real breasts. If that is what has to happen, it will be the healthiest thing for me to work toward getting to that place. However, if six months or a year from now I seem fine, I don’t want the pain of what I’m going through, or what many other women will have to go through to be minimized, as I feel like it often is. I want to place that pain here, so that it can be preserved and remembered without my having to hold it in my heart.