Being that I seem to start many of these posts with a time frame point of reference from the surgeries, I am now 7.5 months post double mastectomy and 4.5 months post final surgery. I always meant to write something around how the recovery after that surgery was/went, things that stood out, etc. but with being back into the throngs of work and a flurry of weddings, short trips, and (finally) warm temperatures in Chicago I absentmindedly put this off.

The final surgery was pushed up a week as one of my incisions was starting to open (as my sister Liz described in more detail in the last post). In addition to my final implant surgery being moved up a week, the incisions opening early also required the surgeon to remove some of the skin from the “angry” area (the skin around the incision opening) and pull in/tuck under some skin, and suture up the incisions more tightly. There was also some tissue that had built up around the expanders that had to be cut out.

I’ve learned that incisions opening unexpectedly weeks or months post-double mastectomy isn’t unheard of, but definitely is not very common. I got involved with the Bright Pink organization in February—literally filled out the application to become a PinkPal mentor while recuperating on my couch—and was paired with my first “Pal” in early April. [Bright Pink is the only national non-profit organization focused on prevention and early detection of breast and ovarian cancer in young women 18-45.] This young woman also had her incision open unexpectedly and had to go back in for a corrective surgery. Again, I don’t think incisions opening months post-surgery is particularly common, but it does happen.  I happen to have thin or less tissue in that area than average and may have overdone it a bit in terms of getting back into my workouts too aggressively or early (in my defense, they did say I was cleared to do anything).  Still though, whether or not you’re likely to have an incision open post-surgery cannot be predicted.

I feel like I was in far more pain coming out of the 2^nd surgery (implant surgery) than the 1^st, which is likely due to the type of anesthesia used and pain meds, but it subsided much more rapidly. I had one, focused pain-point for a few weeks that the PA explained is the location of a deep and strong stitch that lifts the skin up and in which will ultimately result in a more natural look when I am all healed. I wasn’t allowed to do any form of exercise for six weeks and was also under restrictions as to what I was allowed to carry or lift. In total, I had three appointments with the plastic surgeon following this surgery: post-one week, -six weeks, and -twelve weeks. My next appointment isn’t until April 2017 (whadduppp).

Now I feel great, keeping in mind that my body is still recovering and things aren’t back to how they were before the surgeries, nor will they ever return to that “normal.”  Instead, I just have a new baseline for what constitutes “normal”. (Perspective is everything.) I’m working on my range of motion which isn’t fully there. For example, lying supine I can’t keep my arms straight and move them towards my head beyond shoulder level. I’m running a lot without any issues but can’t do chest exercises (i.e., push-ups). As the PA explained, doing so could move the implants down and towards my back (this resulted in a drastic image in my head, which I’m sure is far more exaggerated than what could realistically happen, but still let’s not mess with that). This directly impacts what fitness classes I go to and modifies my yoga practice (twisting isn’t fun either).

Generally, I don’t have any pain now, although at times when I move a certain way I’ll feel a quick, sharp pain. I still sleep mostly on my back and sometimes on my side but I have to move around a bit to get comfortable. I’m pretty much able to wear whatever clothes I feel like, excluding anything particularly tight that has to be put on / pulled off over my head.  (I got stuck in a shirt once – aggravating as hell at the time, entertaining in retrospect.) Bras are uncomfortable, and I technically don’t “need” to wear one ever again, but I of course do if the clothing material requires it. I’d recommend other women who go through this to stick with underwire-free and front closure bras and most definitely do not get sports bras that are too-tight (again, you don’t actually need to wear one but working out without one just seems weird to me).  The scars look far better than I was expecting. You can slightly see the edge of the one on my right side when in a swimsuit (the side where they had to cut out more tissue) and they will continue to improve over time. If I go for a long run, the skin all along the scars will get pretty red but that’s also progressively getting better. I’m a bit more self-conscious about having the scars than I initially expected I would be, but I’m sure that’s also something that will fade with time.

I have been asked frequently, “Are you still happy you did it?” and the answer is 500 times yes. Through both this blog and volunteering as a PinkPal mentor I have spoken with many women who are either considering the surgery or who have already scheduled it. Some of them are high-risk carriers, like myself, who opt to do the surgery while others have already been diagnosed with breast cancer. Learning about the additional treatments, procedures, fears, lifelong risks, etc. is both eye-opening and heart-wrenching. Thankfully at the time of my surgery I still had options and could essentially take my time making my decision.  Even then, and even knowing that going through with the surgery would reduce my chances from getting breast cancer from 88-92% to ~<2%, it was still a very difficult decision to make.

Once diagnosed, you may have some options but those options are limited and there are time constraints placed on your decision-making.  Worst of all, there’s still a lifelong chance of recurrence. Often times the emotional impact on the diagnosed woman goes well beyond the diagnosed woman’s fear for her own health, and she selflessly worries about the effect on those close to her; every woman that I’ve spoken with who has been diagnosed mentioned not only her own (obvious and understandable) fears but also her worry over the effect on her children, significant other, family, etc. It’s a selfless thought that just adds to the respect I have for these women and how strong they are.

Is the surgery a cakewalk? Hell no. Is the recovery easy? It can be a bitch and absolutely aggravating (for example, getting stuck in your own shirt). Life is short, and I’m sure being diagnosed with any kind of life-threatening disease puts that into perspective, but life really can be freaking LONG…or I at least hope that mine will be and getting this surgery takes one large risk factor off the table. There is no way that I could have made it through the surgery and recovery without all of the love, support (especially my parents – Cheryl/mom in particular who spent 6 weeks in Chicago to take care of me), well wishes, texts, emails, letters, care packages, etc. throughout the process. It was honestly overwhelming and I am incredibly thankful and fortunate to have such amazing people in my life. For anyone considering this surgery or has a family member/friend in a similar situation, I am more than happy to connect and provide any insight or advice (via email).