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


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.