Two weeks ago I dropped a surprising pic of me getting ready for my bilateral mastectomy. If you are on my mailing list you may have known about my diagnosis of DCIS (ductal carcinoma in situ) in July. This was a stage 0 breast cancer though it was grade 3 which meant that at the moment it was noninvasive but could have very soon turned to the invasive variety.
At first I was going to have a lumpectomy (really a partial mastectomy due to its size) then do radiation. This cancer was not hormonally-responsive so it did not require tamoxifen after surgery, just the radiation. I was several weeks into my decision to proceed with lumpectomy until I started having some wobbly emotions (something that comes with the territory). I started considering bilateral mastectomy with implants which I truly never thought would be an option for me yet here I was. I met with surgeons and discussed all of my options and, in the end, decided to go with mastectomy with DIEP flap reconstruction, meaning they will use fat and vessels from my abdomen to reconstruct the breasts. Funny side note, when you google DIEP flap surgery a video that I produced for Johns Hopkins 12 years ago is one of the top video results. It was a series of videos on reconstruction and various aspects of diagnosis and recovery. I remember thinking I don’t know how I would handle that if it were me in that position. Turns out you handle it.
The emotions leading up to the surgery were varied, surprising, and very unpredictable. I am so thankful I’ve cultivated a meditation and pranayama (yogic breath work) practice because this is one of the reasons why we do it. By practicing while things are relatively calm, when the big shit hits the fan we have some really effective tools to work with. We understand ourselves in a clearer way (warts and all) and it allows the opportunity to apply the techniques more effectively. In fact, the very first thought I had when I got the DCIS diagnosis over the phone was “OK, I have tools.” A surprising reaction indeed.
The weekend prior to my surgery was my 10th wedding anniversary. My husband and I spent the weekend in the Catskills breathing in Fall mountain air, getting massages, and being serenaded by some of the (closing!) cast of Phantom of the Opera. That musical occupies a special place in my heart. I saw it twice on Broadway as a kid and it was one It was sublime.Yet there was an undercurrent of anxiousness. An unknown that I was sitting with for three months now, feeling mostly confident, but also completely WTF is happening. Nature can hold and heal those kinds of emotions so walking through the woods, floating on the water, and watching clouds float by beneath us was the perfect way to neutralize the charge of those last days leading up to surgery. Plus, since it was the last hurrah with the girls, I let ‘em all hang out!
Healing mountain air, hiking, and sharing in nature😍
Letting the girls enjoy their last nights out😂
The day of surgery started with meditation, a deep prostration and calling in of guides, ancestors, deities, devatas, and all who may help me in the upcoming journey. I then practiced asana topless and took some last photos of my body as it had come to be over my 43 years. I showered with my chlorhexidine soap, packed the last few items in the hospital bag and snuggled my daughters.
We got in the car and the song that automatically started playing from my phone was one from the mix I made while we were death doula-ing my father almost exactly a year ago exactly. I took that song coming through that my dad was letting me know he was there. I’m glad he wasn’t here living it because the whole thing would make him so sad. He felt things like this deeply.
We got to the hospital, got checked in, and it was time for the tech to get me in my gown and get my vitals, etc. To my delight, my tech, let’s call her Eva, was Hungarian! She called me by my name with the proper accent and we exchanged a few words in Hungarian. It was instantly uplifting and just another small acknowledgement that things were OK.
Nerves before the big game.
My surgeons came in, we discussed the plan, marked up my body, and they gave me “something for my nerves” before wheeling me into surgery. Whatever that was hit me fast and I don’t recall being wheeled down the hall into the surgical suite. What I DO remember was watching the nurses and docs milling about above me adjusting the lights, and me running my mouth about being a video producer at Johns Hopkins and why, oh why! didn’t I get this POV shot of a patient on the table because it was SUCH A GOOD SHOT! Hoo boy, the drugs were strong.
My next thought was how much better this scenario was compared to how John Adams’ daughter had her breast cancer removed. If you saw the HBO series it’s brutal scene. They did not show the surgery but the faces alone makes it so visceral. Let’s be eternally grateful for things like anesthesia and pain meds in this day and age. And let’s use them wisely.
My surgery went well. The team informed my husband that they got everything and it went smoothly. There was no indication of cancer behind my nipple which was a concern. While the surgery went well, there was still the matter of getting results back from pathology as to whether the cancer had remained noninvasive, changed to invasive, or remained in some other tissues.
In the PACU drifting in and out of a dilaudid haze.
The first couple of days in hospital were pretty tough and the pain meds did not fully handle the pain. Something I wasn’t quite prepared for. I wasn’t writhing in agony but moving my arms or contracting my abdominal muscles was impossible. My husband had to lift my arms for me and help position them into a comfortable position. Sitting up was something I had yet to do but that ended up being a two-person job.
So, being that I’m holistically-minded let’s talk about pain meds. I really wanted to be conservative with the heavy-hitter drugs. I didn’t want oxycodone if I didn't need it, but at a certain point I just had them bring on the full buffet. After attempting to stand up for the first time (with assistance), it was so painful I started to pass out. Thankfully I laid down in time. I was still trying to be mindful about the amount of heavy pain meds but at a certain point I had to just had to realize I needed them regularly and in full doses. We finally started to dial in the rhythm and pain management schedule and honestly that was what helped my healing progress quickly.
Central to this whole situation was/is my amazing husband. He’s been at my side helping me every step of the way. He slept in that uncomfortable recliner for two days, fed me, literally supported me when I had to sit up, helped me to the bathroom, and just kept the positivity and love flowing. We even had a few laughs. He was so phenomenal I couldn’t have progressed so well without him. He changed my dressings on a daily basis because I couldn’t yet look at my body. This shit is real. And I’m so lucky to have him as a partner.
My husband dramatically putting my nose ring back in.
Back at the homestead my sister had flown in from Texas and was taking care of my kiddos. They were pushing the boundaries as best they could and being appropriately spoiled by their auntie. My oldest, the most daunted by the whole surgery affair, was apparently taken aback when we called her from the hospital on video. She didn’t want to visit me in the hospital and apparently even the video call was a lot. She has a lot of “mixed feelings” when we talk about it. It’s totally understandable and I let her know that. My sister and mother-in-law traded the baton so between them and friends we have had so much help with the girls. It has meant the world.
So what can I say about this journey thus far? First, and probably most importantly, it’s so personal. That is probably the biggest takeaway from all of this. I remember when Angelina Jolie got her preventive bilateral mastectomy due to testing positive for the BRCA gene. I thought why would someone take such drastic measures over an unknown? I now fully understand how deeply personal these decisions are and how different people have different priorities AND THAT IS OK. It’s the reason I ended up going with a bilateral mastectomy myself.
My pathology has come back and there are no invasive cancer cells as hoped but I’m not out of the woods entirely. I do still have cells that need to be dealt with. This will be managed just like the rest of it and I’ll continue putting one foot in front of the other. Wise advice that was given to me by one of my attendees at the mediation center where I teach.
Sharing personal experiences with others is not my M.O. but I’ve had to share details for logistical reasons to let students and staff know when I’ll be out, etc. Subsequently, I’ve been able to connect with others on the journey because of this and it’s forced me to open up, which has been a blessing. Not only that, but one of my best friends from childhood and I were to go through this surgery exactly a week apart. Slightly different details but both bilateral mastectomies. And then come to find out another friend is a few weeks ahead of us on the path. Needless to say text chains have been blowing up for the last month now. And the sharing has been soooo important. We simply cannot hold this alone. It’s way too much. The weight of it is unknowable so you can’t even ration it out over time like you would your workload. It doesn’t work that way. We need support from beginning to end (hint: “it” doesn’t end).
Since this is a journey I’m very much on in real-time, I may share more on the subject. I currently have tissue expanders implanted which are temporary devices to be slowly filled with saline to stretch the skin in preparation for my next reconstruction so that is still very much uncharted territory for me. After one fill, I definitely have thoughts. I’ll share another day. Some other topics that come to mind: getting the news, preparing for recovery, transitioning from standard pain meds to more holistic options (something I’m doing as we speak), using breath and gentle movement post-surgery, and probably several other topics that I don’t even know yet because they are still on the horizon or I haven’t even reflected long enough to realize they are of note.
Feeling fresh after my first hair wash and bird bath in about a week😬
I have another major surgery in a few months so I get to do this, in another way, all over again plus some other delightful little twists along the way. But I feel armed with the knowledge that rest, nutritious food, support, faith, meditation, breathing, doctors, therapists, and deep gratitude to those in the living and non-living realms, will help the healing process along exponentially.
So here’s to carrying on. Facing it with courage, being soft, laughing, crying, and everything in between. What a ride🤘