On November 23 ,2016 I lost my breasts. No, I didn’t misplace them. Although I do have a couple of amusing stories of women with prosthesis who actually have misplaced their “breasts.” Eventually like so many things we misplace, they turn up in the darndest places. Mine however, were gone for good. They’d been surgically removed due to breast cancer. They would not be turning up in the dog’s toy box. (true story) I was horrified, terrified, angry and shocked. That quote about God not giving you more than you can handle? It’s crap. Life just hands out whatever it likes and you can either choose to deal with it or curl up in a ball. Or you can do both actually. Curl up in a ball for a day while the shock sets in then unfurl and go deal with it.

I actually wasn’t going to write about this at all. It’s not in my nature to whine about my health issues. However, while discussing it with someone else who was just diagnosed she suggested I do. She pointed out it may be helpful to other women facing the same diagnosis. To that end, I decided to share my story which is ongoing.

On November 1, 2016  I got ‘that’ call. You know the one. The call you know is coming yet, you pray never comes.  I’d had a screening MRI which led to a MRI guided biopsy a week prior. I had actually told the radiologists doing the biopsy (who I knew) “It’s malignant.” He assured me it most likely wasn’t. I should have had him put money on it. However, given I was watched so closely, I thought it would simply be DCIS.  You see, I was already a breast cancer survivor. In October of 2004 I had gotten ‘that’ call and proceeded to have a lumpectomy and radiation. I also had my ovaries removed. Given that I was high risk, I had continued to be screened every six months. A protocol of mammogram and MRI. So, when I got ‘that’ call on that November morning telling me I had Invasive Ductal Breast Cancer my reaction was “seriously? again?!!!!” DCIS, sure. But invasive? My background and my history afforded me some advantages. I knew what this meant and I knew what my options were and they were limited. “I’ll call Peter” (the plastic surgeon) I said to my breast surgeon delivering the news. I knew my only option would be mastectomy. I had also decided long ago that if this happened, I would have bi-lateral mastectomy because of my risk and I would have immediate reconstruction. I also wanted nipple sparing surgery wherein the skin and nipple is preserved. Thankfully, the location and size of the lesion made me an appropriate candidate for this type of mastectomy.

I met with my breast surgeon later that day. Yes, she’s that great. We discussed everything again and agreed on the approach. She wanted to speak with my neurologist (crap! that’s right! I still have MS!) to discuss my MS medications and any concerns my neurologist might have. I said I would arrange it. I also had my appointment set up with the plastic surgeon for two days later. We made our plan, got my lab slips and after meeting with a nurse, I was on my way home. Then it hit me. I would be losing my breasts! I liked my breasts. They weren’t the breasts of my twenties but, they weren’t half bad and they were MINE! Suddenly, I liked them more! They had been asymmetrical since my last lumpectomy. Actually, almost a full cup size difference. I never wore a prosthesis. Instead, I was able to disguise the difference thanks to some wonderful Victoria Secret bras. Suddenly though, they seemed perfect to me and I really didn’t want to part with them. Yet, I knew I had no choice. The cancer had to go and this was my only choice. I would have reconstruction and hopefully end up with perkier, symmetrical breasts. I focused on that and tried to move forward.

I also had concerns about the cancer itself. Had it spread? If so, how much? Those answers wouldn’t come until after the surgery and we had the final pathology from the breast and lymph nodes. Unfortunately even with all the advances in cancer treatment, we haven’t done away with the waiting. the agonizing waiting. I decided the best approach was to do what I always do when stressed. Break out the Comedy. I watched all the stand up I could find. Kathleen Madigan (highly recommend her!), Lewis Black, Eddie Izzard and then I stumbled across Tig Notaro. Imagine my utter shock and surprise as she began telling her story of having breast cancer and a double mastectomy. Then……She…..Took her shirt off! She actually performed the last part of her special with her shirt off and her mastectomy scars on full display! First, I burst into tears. Then I was fascinated. She looked great! Her scars looked amazing. I then thought about what I’d just watched. She was able to stand in this packed theatre, while being filmed and was completely comfortable with who she was. I was amazed and inspired. I relaxed a bit. I would be fine. Then I got the other ‘call’.

Just as I had started to accept what was going to happen I got another call from my breast surgeon. She had spoken with the plastic surgeon. Although my visit with him went well and we planned immediate reconstruction, he had reservations. serious reservations. He had expressed concerns to me about my increased risk of infection and failure due to both my MS meds and my prior radiation. Apparently now, he was deciding he didn’t want to do immediate reconstruction. My head exploded. This meant I would be waking up without breasts! I also would be waiting and hoping he decided to reconstruct me in the future. I was horrified. I was also angry he didn’t call me himself and actually voiced that opinion stating “you tell him to pick up the phone and have this conversation with me himself.” Yes, there were some expletives thrown in there. Did I mention angry and horrified?

To his credit and I’m sure the message was delivered verbatim so I give him a great deal of credit, he called. He proceeded to explain his grave concerns. Medically I knew they made sense. Emotionally, I was having a hard time hearing it. I decided to focus on the technical as a way to cope. I asked him to formulate a plan to provide the best outcome for the skin and nipple placement. Given there would be no tissue expander placed, there would be a risk of the nipples lateralizing (moving to the outside) during healing. He agreed to still be part of the surgery marking me for optimal incision placement and then “taping” the skin and nipples in place with a large Ioban bandage to fix their placement. (It worked beautifully)

The other thing about having breast cancer (or any illness) is you do have to tell people. You really have to tell them if you’re having a double mastectomy. Even the most inattentive will probably notice. Eventually. I told my friends and family and tried to reassure them. It would be fine. We caught it early. It’s interesting that you’re the one with cancer and somehow you become the leader of the cheering section. However, I couldn’t exactly say “this might not be okay.” There were a couple of people who did know the truth. They knew that my MS drug had  suppressed my immune system which not only put me at great risk for infection but, gave the cancer a big advantage. That wasn’t exactly comforting. I chose however, not to share that with everyone. Why should they worry too? We’ll take it as it comes. If I need more treatment, I’ll let people know.

The day of surgery came. Oddly, I was much calmer than I anticipated I would be. Perhaps, I had just accepted my fate or perhaps it was denial. Either way, I was nervous yes but, not a wreck. I had actually expected to be a mess. When we arrived at the OR we were greeted with “Oh, This must be Willow!” I was a bit taken aback. Yes, I had called ahead to ensure they knew I would have a service dog. My Surgeon had also made note of it on my record but, I couldn’t help wondering if they knew who I was or why I was there. The pre-op procedures are a bit lengthy but went well. If you’re having a sentinel node procedure as well, you get a tour of the hospital prior to surgery. First a quick trip to the procedure area where the radiologists injects your breast with the blue tracer that will identify the sentinel lymph nodes during surgery. Then off to Nuclear Medicine where you wait for a bit then they verify that the tracer has actually made its way to where it needs to be. Finally, you’re returned to pre-op holding. During all of this, Willow just did her job as if it was just another day. She pulled my wheelchair all over the hospital wowing all the onlookers.  Admittedly I kept thinking “when can I have the drugs?” Thankfully, the nice man from anesthesia arrived with that lovely syringe and off to sleep I went. Looking back, I never said a proper goodbye to my breasts. I’m guessing if I had, the people around me may have thought I’d already been drugged. Willow left with her alternate handler oblivious to what was occurring.

When I woke up I was not a happy girl. Of course, Willow had been brought back and was right at my side on the floor.  I don’t remember much from the recovery room but, I’m told I was quite vocal about my pain, a nurse who had told me “mastectomy without immediate reconstruction isn’t that painful”( IT IS! ) and a few other choice criticisms. All apparently done while pushing aside my oxygen mask and then falling back to sleep. I did however, apparently gush glowing reports about my breast surgeon. Thank God! I’m told she was standing right there. Once I really came around I was curious. Oddly, I really wanted to see what I had been so terrified of. When the nurses came in to check my drains and dressing I looked at my chest. I was amazed! I wasn’t horrified! I was impressed! I thought “wow, they really did a great job.” I didn’t see a body that had been deformed. I saw an amazing surgical site that was going to heal beautifully. Admittedly, it was different from the body I came in with but, it wasn’t terrifying. I thought “I can do this.” Of course, I also thought “where is that nurse with my pain meds?”

As I spent the night in the hospital, Willow was spectacular. She lay quietly on the bed we had made for her in the room. Only moving when asked to assist me with a nurse, to the restroom. Nurses, doctors, aides and visitors in and out all night and she lay perfectly quiet just watching. I had made arrangements for someone to feed and walk her at the appropriate times. She was the professional she is. Going out quickly and returning to her bed to wait and watch. I must say, the hospital was also wonderful. They placed a sign on my door “Service Dog in Use” to alert anyone to her presence. When we left the next day, Willow pulled the wheelchair down the hall. She obviously wasn’t aware but, I was leaving a changed person. My body would never be the same.

Thankfully, my lymph nodes came back negative. The cancer hadn’t spread. The pathology also showed that the lesion had been very small. we caught it very early. No chemo! Thank God for good screening! Now I just had to heal and start reconstruction. I healed beautifully. I had three drains in which all came out at different times. I will say this. If you EVER have surgical drains in for any length of time, go drugged to have them removed! The first drain was removed and I thought “oh that was easy!” Ha! That drain was a small, short drain. No big deal. The second drain was in my chest. As the nurse pulled it out, I honestly thought I screamed. On the way out I said to the person who drove me “I’m sorry about the screaming but that really hurt. It actually still hurts.” She laughed and said “you didn’t scream. You just sort of glazed over for a bit.” It was then and there I decided when the last one came out I would be medicated. I was and it did help. Immensely.

Over the last couple months as I’ve been recovering I will occasionally catch a glimpse of my profile in the mirror. It still surprises me a bit. It doesn’t scare me or bother me per se, just catches off guard a bit. I’ve not bothered with prosthesis while awaiting reconstruction. In this house, they would end up in a dog’s mouth at some point. While that would be amusing, it would also be a waste. They’re quite costly for the insurance company. I’m also very fortunate that this occurred during the winter as I can camouflage quite a bit with big sweaters. If I were to be waiting longer for reconstruction, I may well use prosthesis. Though I’m not sure. Oddly as time has passed, I’ve become more comfortable about my changed body.

Fortunately, I did heal well and the plastic surgeon agreed to begin reconstruction. In a couple of weeks I will be having tissue expanders placed to stretch the tissue and prepare it for the permanent implants. The process takes about four months during which time the expanders are injected with saline to gradually fill them and stretch the tissue. I’m told this is actually the most uncomfortable part of the process.

It’s interesting to me that I’ve actually had people ask me why I want reconstruction. It’s a complicated answer. Perhaps some of it has to do with how much we as a society still judge women by appearance. It’s not something we should be proud of but, we do it. It’s simply a fact. Some of it has to do with ‘balance’. I’ve always had breasts there and not having them there just seems odd. Off balance. I also don’t want to have to buy all new clothes. I’ve basically been the same size for as long as I can remember. So it’s also an economic factor. It’s psychological. I’ve always liked my body. I’ve always had breasts. I’d like to maintain that same appearance. There are many more reasons for wanting reconstruction but I’ve found when asked that question now I just default to the simple one. Because, “I lost my breasts.”

 

Afterthought: If you know someone battling cancer (or any debilitating illness) there are some things you can do that are helpful and some that aren’t.

Let’s start with those that aren’t. It’s not helpful to copy and paste anything on Facebook. No one’s cancer, MS, Parkinson’s, Ataxia, etc. was ever cured by a Facebook post. It’s also not helpful to share your story of “my aunt Suzy DIED of xxxx” As a patient, we’re trying to focus on LIVING. Also, while I’m sure you mean well please keep all your internet searches on bat crap crazy diets, the person who was cured by ingesting parasites (true story), etc. to yourself. Our brains are swirling with actual, real information delivered by medical professionals. We have many decisions to make. Don’t tell us “It will be fine.” Guess what? It may not be and we know that. It also feels patronizing. Also, NEVER tell a woman “they’re just breasts” if she’s facing a mastectomy. There is NOTHING you can compare this to and unless it’s you? You have no right to speak, so just don’t.  This one may surprise you but, don’t continually ask “how are you?” I made this mistake once myself with a friend who was terminally ill. Her answer taught me a valuable lesson. I asked and had my head handed to me. She replied “How am I? I’M DYING! that’s how I am! I didn’t plan on this and I’m pretty pissed off so stop asking!” I actually laughed because of her delivery but, I then asked her what a better question was. She said “How’s today going?” or something more relevant to that moment. I realize how much sense that makes. You become incredibly tired of hearing “How are you?”When you’re battling a serious disease.  There are many more “don’t s” but the point is, think before you speak or act. Ask yourself “Is this helpful?”

As for what IS helpful, SHOW UP!  Be present! Listen! Sometimes people just want to talk about how they feel. They may be frightened, angry, sad. Just listen. They don’t necessarily need answers, just to talk. Help them with daily tasks. They’re exhausted! Grocery shopping, house cleaning, laundry, cooking, pets, shuttling kids, anything that helps enable them to rest. Driving to doctors appointments. Visit if they’re up to it. they may be suffering from “cabin fever” and would enjoy some company. If they ask for help finding information, do your best to find vetted, factual material and encourage them to always speak with their physicians. The most important thing is simply be there. Even if it’s a phone call to tell them a funny story. Just be there. Who knows? One day you may get a call from a friend with breast prosthesis frantic, that says she needs your help. You’ll hear “I lost my breasts!” and off you’ll go to look for them………

#Breastcancer #Mastectomy