Netflix kept me quiet during my recovery. VERY quiet. I laid on the bed, mastectomy pillows under my arms, a huge stack of pillows behind my back to make it more comfortable (keeping me at an elevated/angle) and stared at the television. By my side was a little plastic organizing box – in it was the house phone, my 2 cell phones, the TV remote, tissues, a book and a magazine to read if I wanted. This little bin was small enough to sit on the bed next to me and not take up any noticeable room – and also helped me to keep from reaching (or losing) anything that I longed for during my resting time on the bed. I also had two big, long body-type pillows on either side of me (in addition to the mastectomy pillows). I had my own little recovery nest and it was awesome.

When visiting the surgeon to get my ok to return to work, I heard something I hadn’t expected – that I was a “model patient” during recovery. Seems my Plastic Surgeon wasn’t kidding when he and his nurse kept saying how fast I was healing. My surgeon said that to heal quickly, one needs to sit tight, stay-put and REST. Netflix and having my young daughter out of the house for the first week and a half of my recovery really, really helped me stay quiet and I attribute this to my “model patient” status with the surgeon. I had no idea it was THAT important to be quiet. Yes, yes – “don’t over do it.” “Don’t put your arms over your head or your shoulders past 90 degrees. Don’t get your heart rate up for 6 weeks post surgery.” All of these I heard but I’d never heard that a the quieter the patient the faster wounds heal! I had no idea. I kept recalling other experiences I’ve heard of where doctors these days want patients up and walking around a lot, instead of bed-ridden like the old days. The local hospital has information on the walls about how far people are walking based on what loops they are walking on the floor they are on. I had walked around just a bit in the house – maybe 20 min of up and around activity when I had to go to the bathroom, eat my pills, get food and water to replenish – then I’d move around but even then, I was very careful. I also was very careful not to stretch forward. I noticed this as soon as I tried – stretching forward to pick something up – was something I could feel, so I very quickly was careful about not lifting anything heavy (the surgeon never gave me a certain weight not to lift, but even carrying 2 dinner plates was enough to elicit a very light twinge – so I deemed 1 plate enough in the early days).  I think I got lucky and struck a good balance of moving around the house and also resting – especially anything to do with the pectoral muscles. You’d be amazed how much they are involved in.

In the end, for me as I started to get better and do a little more around the house I noticed that even the simple, little movements would make my incision area a little sore. Opening toothpaste or a pill bottle (push and turn). Cutting up a ripe peach. So – the moral of the story for anyone who may go through a double mastectomy – DO take it easy. REST REST REST your upper body. Don’t lift things. Don’t reach for things. Don’t put arms over head until your doctor says you can and give yourself time to heal! Mentally you might feel ok but taking this time for yourself to be quiet, restful is paramount to a faster recovery time – and for me, Long Live Netflix!

After the surgery I received my pathology report. It told me some valuable things. 1) my cancer was still the same type/pathology as it was before – no new surprises, 2) no cancer was found in any of my lymph nodes – no progression of the disease, and 3) that the cancer they removed was a single tumor of 1.2 cm in size. This 3rd one was the kicker for me. Previously the surgeon had told me that it looked like the tumors had gotten smaller and were responding well to treatment. Well, I started out with a diagnosis of 2 tumors – ~1 cm and a ~0.5 cm. After speaking with my oncologist about this report, he informed me that the smaller tumor gave 100% response rate and was not found. The larger 1 cm tumor didn’t respond. My oncologist said that for the type of cancer that I had, it was likely that at any given time during my chemotherapy that only about 25% of the tumor cells were growing – and thus, caught by the chemo (which targets rapidly dividing cells). If the cells aren’t undergoing any growth, then they aren’t dividing and the drugs cannot deliver their punch. So, I took that to mean that the larger tumor I did have obviously wasn’t growing very much, instead it was just kind of sitting there, hanging out. Given this, I’m glad I took all of the tissue out and I’m happy that my herceptin immunotherapy treatment will continue for another 7 months. Seems my aggressive Her2 positive cancer hadn’t gotten as aggressive in its growth as it could.

Today was the first day since the surgery when I actually took care in how I looked. I had an event I wanted to attend at my daughter’s school so I broke out the make up, put my jewelry back on (I’d removed it all for the surgery and never put any of it back on), put a bra on (with assistance) and covered my hairy legs in nice pants. In the end, it was quite empowering – feeling like my old self (amazing what make up can do!).

But – this accomplishment was not reached without another kick in the gut from cancer. As I was putting on my eye liner I realized that all of my eye lashes had gone. Yup. Last time I’d put make up on (the day before the surgery) I know they were there and today – well, today they were not. Luckily I’m not into mascara – I’m all about the charcoal gray eye liner with my favorite Mary Kay eye shadow and with those in play, I still felt good.  Also – my eye brows are still around. I’m hoping they don’t go missing…. I honestly think that would be worse and much more noticeable….  I’m prepared if they do (already picked up a nice, brown eye brow pencil if (heaven forbid) I have to draw them back on). For now, I feel confident that they are staying around. Just in case, I’m keeping my fingers crossed.

The second thing that was different in getting ready was figuring out how to be comfortable in public concerning my breasts. Currently, my chest doesn’t sag – they are two mounds with happy little nipples pointing about. I put on a t-shirt and, well, the nipples were noticeable easily to me. Since I didn’t feel that was acceptable to me – and due to the summer temperatures outside – adding a second shirt or coat wasn’t going to do, I figured I’d give a bra a try. With my husbands assistance to close it, I then checked to see how I looked in the t-shirt. A slight improvement but with a new problem – the bra size was all off. The straps were adjusted accordingly to accommodate my much smaller cup size and that helped but still – I could see the rough up and down bumps from a too-big bra. Thinking for a second I realized the answer was obvious – what does any female do when they cannot fill out a bra? They stuff it. Feeling like I was more in high school trying to catch up with my girl friends because I was a late bloomer, I grabbed a bunch of tissues and stuffed the cups and voila! A nice smooth surface finally was realized with the t-shirt. Success!  It’s all about overcoming obstacles. This one was more of a silly one but I was not to be outdone and felt good that I succeeded – though it did feel like smoke and mirrors! Cancer be damned!

Although my eye lashes and “filled bra cups” are currently gone, they are not forgotten and I know that they will be back. Have I mentioned that this is a long, slow battle that requires unending patience and optimism and perseverance to win??? Screw you, Cancer. One thing you’ve taught me is patience and I know these will all come back.

It’s been 2 weeks since my double mastectomy/reconstruction surgery. I’m managing the pain fairly well – more discomfort than pain to me, and I’m worrying more about becoming too complacent and over doing something that would result in my recovery taking longer than originally thought.

Recovery. Usually post-surgery you take your pain pills and 4-6 weeks you are back to normal. I’ve had multiple surgeries before – two on my abdomen, one on my knee. This recovery is not the same. It’s not what I expected. Usually post-surgery you look at yourself and you still outwardly look the same. Sure, you might be missing a gall bladder or a ligament or perhaps even a small part of an ovary but no one can tell and you don’t really miss them – even if you do have to learn to live without them, and even if that does require you to modify things forever going forward in some small way.

This surgery is much more brutal. Looking at myself in the mirror after the surgery is surreal. It’s like I’m looking at a movie version of myself – stunt double body with the sewn up chest with barely any hair on my head. It’s not me. I have long, beautiful brown hair that I love. It’s healthy and shiny. I am slim – having spent the last 3 years going to crossfit 3 days a week – and over the last year really seeing the change in my waist which I fell in love with. My chest, while I never even looked at it as much, was something that I’d learned to accentuate a bit more now that I was feeling stronger, slimmer from all of the time at the gym. It helped me relish my femininity, my power and sexuality as a woman.  Now I look in the mirror and see a Frankenstein-esque collection of scars across my chest, under my arms and on my stomach from the numerous surgeries. I understand that the reconstruction results are supposed to be amazing and that in the end the scars will be barely noticeable but now, well now I just cannot see it. All I see is cuts and lines everywhere. Instead of breasts which require a bra I currently have two hard bumps – mere suggestions of breasts. They don’t sag, they are hard. I feel that I have no need for a bra – especially now since post-surgery everything is so tight and new.

The recovery isn’t just for this surgery. This is a recovery within a recovery. My nails are still horrendous though improving. I keep them trimmed shorter than short – so I can cut off as much of the offending reminder of the chemotherapy. I spoke to someone who told me it’ll be 6-9 months for my nails to fully grow out. It’s a painfully slow process. All I want is for every reminder of the cancer to go the fuck away and every day I look in the mirror or at my hands and I cannot even see a difference. I must look week to week to be able to notice any difference. I’m forced to be patient, to slow down, to stop, to look elsewhere at what’s around me as the time passes.

I hate going slowly. It’s not my style. I walk fast, talk fast, think fast, type fast. This entire experience is an exercise in patience. The Ultra Marathon x Iron Man of races.

I’ve set small goals to reach so I can mark my improvements. Right now I’m trying to get off the percoset and onto Tylenol but the discomfort is a bit too much, so I continue taking the percoset. This means I cannot drive. I thus cannot take my daughter out and do any errands or even take myself to the doctor for an appointment. So I figure another week I should be fine.

Now that I’m through the worst following the surgery I’m feeling clearer in my head, as if I could handle doing work – but I know that I shouldn’t. There is so much more going on that I need to accept, digest, figure out how to move forward from. Right now I still cannot undress myself. Yes, it’s true I did wear a t-shirt today – the first time since the surgery (I’d been wearing button down shirts) – but the truth of it is, when it came time to take it off, I couldn’t do it without help. I couldn’t do it myself due to the limited movement of my arms and shoulders. Yeah. Wow.

I’ve been passing the time with Netflix watching Mad Men. 7 series, 13 episodes a series ~ 1 hr per episode. Watching it continuously allows me to forget my own situation. I get lost in the story line – the fashion, their work in an advertising firm, the people. It’s wonderful. But then I feel guilty for not doing more around the house to keep it up. And then I remember that right now the number 1 priority is to rest and not over do anything. So I push everything else out of my mind and I curl up in the comfort of my daughter’s room, under the soft blankets, and surrounded by a supportive bed of pillows and I watch – hour after hour of Mad Men. And then I get philosophical about the show and its portrayl of women in the 1960s, and women in offices, and the relationships between men and women during that time and now – and I think about it all, compare and contrast to my own life and start identifying with certain characters as certain people in my own life and it all gets odd. I’m over thinking. It’s a bad habit. At least for once I’m not thinking about cancer or work. It’s a nice change, a guilty pleasure, another silver lining I’ve found that I’m trying to enjoy as much as I can.

5 Days ago I had my surgery. Double mastectomy followed by first phase of reconstruction – implanting of the expanders. Not sure where I thought I’d be right now or how I’d feel right now. Whatever I imagined I don’t feel like this is it.

On the bright side –

1. my pain is manageable. I can come completely off the pain medication (Percoset) – letting it wear off completely for an extended time (7-8 hours), but in the end, I need to take it again since the post-surgery pain is ever-present. Even if I can tough it out for a while and feel strong in the long run I need to give myself a break and take the meds.

2. I am mobile. I can get up, move around and take care of myself. I’m not bed-ridden. I can sit up, stand up, walk around, pick things up and put them down (as long as they don’t weigh too much).

3. I have support. It wasn’t until Friday that I remarked on Facebook that I’d completed my surgery and was on the healing side now – with the worst behind me. Not so certain the worst is 100% behind me though. Honestly, I still think I’m in some of the worst – it’s not a one shot, sharp shooting kind of pain or situation – this whole cancer thing is a long, ultra marathon – of multiple trials and obstacles to be overcome.  Either way, the support is their from friends and family all over. Also, very importantly, I also have the support of other survivors through the young women’s cancer survivor’s FB page. I just texted one of the women this morning after having my emotional damn break on me. She’s amazing – always fast to respond and so supportive! The group is great and I look forward to seeing them again in the future. They are a fantastic support.

4. I have the rest of my physical health and strength. Others who had gone through similar surgery talked about how uncomfortable it was being home after the surgery and how much it hurt to try to sit up, etc. For me – I’ve had surgery which cut through my abdomen 2 other times in my life. To me -those were a lot harder when looking at mobility post-surgery.  With those surgeries any time I tried to sit up I used the very muscles that had been cut – this time, I focus more on using my stomach muscles to sit up and my pectoral muscles aren’t so sore when I sit up. Yes, they hurt but I can tolerate it when I move around the bed.

So – why do I not want to look in the mirror? Because it’s not a pretty sight. What I was only 5 months ago vs what I look like now is a huge, HUGE change. Things won’t be the same moving forward. I almost want to cover mirrors like folks who are Jewish do when someone dies – to remind yourself that you shouldn’t think about how you look, you need (I need) to focus on taking care of myself, experiencing all of the emotions I’m feeling and then healing and moving on, moving on and healing. It’s not a quick process, it’s a long process where I have to mourn over everything that was lost and now accept what is here, then in time, take what I now have and begin to grow in new ways I hadn’t imagined.

The brutality of it – also, who wants to look at me right now? I don’t. My head is still nearly bald – though it is growing back it’s still very short and not 100%. Big bald head. No make up. Make up is a big thing – make up makes me feel in control, beautiful, strong and courageous. I’m post-op right now, not a focus so this only adds to the sad image I see in front of me when I do look in the mirror. I have on an oversized button down shirt – with only one button near my chest buttoned. The rest is wide open in order to accommodate the post-op drains. I still have two holes in my body – one on the right side of my chest and one on the left – where clear plastic tubing goes into my body. The tubes (protected by what looks like clear, saran-wrap stuck to my skin to keep infection out) – extend around to about my belly button. All 4 tubes come together and are pinned together to a piece of surgical tape/gauze on my stomach. Each drain is like a small grenade-shaped clear, soft, plastic bulb that holds the liquids that are draining from my chest – where the breast tissue was removed. The shirt cannot easily close over the 4 big bulbs that hang off my stomach as a contact reminder of what I’ve had done to myself. Being reminded is not what I want. I want to be normal again. The drains gone, the pain gone, and to be back at the gym and work….but that’s just not the case. It’s going to take a few more weeks to get rid of all of the drains and a few more months before I am back with my old mobility. It just sucks. Luckily the only constant is change so slowly this situation will get better, even if I cannot tell day to day, I know that it is.

Today I prepared for the surgery. This entailed many, many things to do in order to make myself feel “ready”. My young daughter has left the house with my husband’s parents and gone on a nice vacation for a week a few hours east of us. I’ve then cleaned up her room (toys into the closet, books where they belong), stripped the bed, washed all of the bedding and remade the bed, brought in a nice small table where I can sit and type on the computer, and also set up a spot where I can recharge my cell phones. All of these preparations are necessary (along with purchasing some wonderful prune juice and other foods to feed me for the next few days) so that I can heal properly at home.

Main idea is to quarantine myself away from my four-footed feline friends and keep myself entertained and hopefully, comfortable enough to sleep. The second idea is too use the prune juice to keep my body from becoming uncomfortably constipated due to the wonders of the usual pain drugs that they have prescribed. Thirdly, it is to use the 2 beautiful “mastectomy pillows” (AKA heart shaped pillows), and a mastectomy apron (to help hold onto the 4 bulbs on the 4 drains that will be coming out of my body after the surgery) to handle the drains more easily and comfortably (if there is such a thing) until they are finally removed from my body and I am onto phase II of my healing (sans drains) – likely 2-3 weeks from now.

Physically – the room is now ready and my body is ready as well. Mentally – I think I am as ready as I can be as well.

Preparation of my body began the weekend preceding the surgery – I had a pedicure to clean up my toenails which had gotten a bit long and had some polish still remaining from my last pedicure and some completely worn off. Somehow in my mind messy toe nails weren’t ok to have for the surgery. If I made my toes cute, I’d be stronger, more prepared. The day before the surgery I had a 90 minute massage (no oils, lotions allowed and I informed the wonderful masseuse about what was going on) and she was extra careful washing her hands and keeping things clean for me. I felt phenomenal, simply amazing after that and it made my final trip before the surgery to see the plastic surgeon a little easier.

My appointment with my plastic surgeon was surreal (yet again).  This time he got out his Sharpie and drew the lines of where to cut on my chest. He then took pictures on my cell phone for me – in case during my last shower with antibacterial soap and the fancy antibacterial-surgery sponge- I scrubbed all of the marks off. If need be, I could use the photos to redraw the lines in the same place. He also took and sent pictures using his cell phone to my surgeon who’d follow the marks and begin the surgery (removing all of my breast tissue). The next time I’d see the plastic surgeon I’d be asleep in the operating room. No worries about the photos themselves – they were from just below my head to my waist. And they hideously showed off the full 7 lbs that I have put on since this whole charade began in March. The photos will live in my mind and help drive me back to the gym as soon as it is 100% safe to go. I’ll take it easy because I have to in order to heal properly, but I will go back and I will fight to get my body back to where it was. I strongly dislike the extra 7 lb tire I now have around my waist. It will go away after this, no matter how much time it takes.

Mentally – I went over the decision so many ways when I was trying to make it that I have never questioned my decision or wanted any other option than they one I have chosen for myself. Following the massage yesterday, I felt so relaxed, so “Gumby-esque” as I like to call it – so zoned on just breathing, taking the next steps necessary, continuing to move time forward. I’m now in the Acceptance Phase. I’m as ready as I can be.

My strategy for dealing with it is to keep my mind distracted. I have started the book “Wild” by Cheryl Strayed (recently it came out as a movie) and in order to pass the time I’m reading it. I will likely take it with me to the hospital so that I can read it quietly while I wait. I’ve informed my mother to be prepared for me to be reading and plugged into my cell phone listening to music. I want to distract myself in my ways and do not want to talk and talk and talk. Sometimes being a peace with things and what has to happen is all about keeping relaxed on the journey as the time passes and the inevitable finally comes. Then, once on the other side of the surgery, I anticipate continuing to read the book (if I comfortably can) to help keep my mind off the pain and keep it entirely somewhere else to get a break. If a book becomes to much I’ll leverage Netflix to help my brain pass the time. And if is really bad (which it very well may be the first few days) I’ll just keep listening to my App to focus on breathing so that I can rest.

I am ready. I am prepared. I have plans, options.