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.