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


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.