I haven’t written here in two weeks. In case you were wondering why, it’s because I got a mastectomy a couple days after my last post. I’ve been adjusting and readjusting to my new body.
If you regularly meditate or do yoga, you’re likely familiar with the concept of the mind-body connection. Well, my mind-body connection is so thrown off. My mind and body are confused. This week, a social worker at my hospital told me that this feeling is normal. She said my mind and body are working to reintegrate their connection to each other.
Prior to my mastectomy, I was so scared of how I would feel when I woke up without one breast after the operation.
After my operation, I woke up with a nurse beside my bed in the recovery room. After a few minutes (or what seemed like a few minutes) of her asking me how I felt, another woman pulled open the curtain around my bed and walked in. This new woman introduced herself as a chaplain of the hospital.
“You’re Regina?” I asked. Yes, she was surprised that I knew her name. I explained that another chaplain had referred me to her and told me to expect a visit after surgery.
Regina asked how I was, and unexpectedly I had a lot to say. My throat hurt from whatever tubes the doctors had put down my throat, but I recall a lot of word vomit. Since it was my first time meeting Regina, I recounted the events of my discovering the lump in my breast, steps I took in my medical care, and the shock I was feeling post-operation. I was surprised how much I had to say. I was feeling light-headed and/or dizzy from anesthetics and medication (and continued to feel that way over the next couple days), but that didn’t stop me from being talkative. I think I was word vomiting because I needed some way of immediately processing everything.
Since my mastectomy, I have felt so many things physically, mentally, emotionally, and spiritually that each feeling could be its own blog post.
Last night, I was feeling better compared to earlier days of my recovery. I was lying in my bed and decided to use more of my ab muscles when sitting up. Then I felt the weirdest sensation at the site of my mastectomy. It wasn’t necessarily “good” or “bad,” but it was a weird sensation. I wondered if I had moved in a strange way to do something bad to my breast muscle or the tissue expander. (If you don’t know what a tissue expander is, read about Implant Reconstruction: What to Expect on breastcancer.org.) It made me slow down last night. Although I don’t think I did anything wrong, I was concerned about moving too quickly. Again, my mind-body connection is messed up, and I don’t know how to process new sensations—or the lack of sensations—depending on the situation.
I talked to a couple different breast cancer survivors about their experiences with processing new sensations, lack of sensations, and changing sensations. It truly varies by person. When I was first diagnosed with breast cancer, there was so much focus on my aesthetic options in addition to treating the cancer itself.
Given how much pressure women are generally given to “look good,” are we surprised that the word “aesthetics” comes up numerous times in my medical process? I won’t lie: I of course want to “look good.” I am both grateful that doctors provide these options to women, and I am resentful that this mirrors the general pressure women are given to “look good” in society. Aside from the pressure to survive cancer, we have to be visually pleasing in the healing process. I have different emotions about that aspect every day.
Oh yeah, so back to sensations: many doctors do not raise that topic with breast cancer patients. I had to initiate all of the conversations about how my body would physically feel after my mastectomy. After doing informational interviewing with breast cancer survivors, I learned that I was not alone in that experience. My best guess is that doctors don’t really know what to say.
At the first hospital where I was diagnosed with breast cancer (I ended up having to change hospitals for a variety of reasons; that’s a post for another day), the plastic surgeon said I would feel numb for 12-18 months. The breast surgeon said I would feel nothing. She said that some sensations might come back, but that was not likely.
Now that I am recovering from a mastectomy, I have asked other survivors about their experiences with sensations in their breasts.
One said that it is weird in what she can and cannot feel. She said that what she could and could not feel changed for about four years. In the last year, there has not been much change, but there are basically sensations and parts of her breast she can feel more of than others. In case you’re wondering, this person decided to go flat after her mastectomy. If you don’t know what that means, read about Going Flat on breastcancer.org.
Another survivor, who is a couple years out from her bilateral mastectomy, opted to get nipple reconstruction. She did not think she would feel anything when they tattooed nipples on her. (Yes, they are an option for survivors. You can read about 3D Nipple Tattoos on breastcancer.org.) Guess what: she did feel pain during that tattooing process. She did not understand how she could feel so numb after a mastectomy, but she still had to feel pain. This weirded me out because in the breastcancer.org article that I cited in this paragraph, it states, “Because the reconstructed breast doesn’t have the same sensation as before surgery, tattooing the area usually isn’t painful.” Keep in mind that the key word there is “usually.” Unfortunately, this survivor’s experience was the atypical case, and there was no way for her to predict that leading up to her nipple tattoos.
FYI all of those concerns about medical costs that I wrote about in Networking and Negotiating for Healthcare are not gone. Just because my focus is mainly on physical and mental health, do not think for a second I’m “too busy” to think about the finances. In a situation like mine, I don’t have that luxury.
I’m doing my best to be hopeful without being irked by The Tyranny of the Positive Attitude that Alexis Conason, PsyD, wrote about in Psychology Today (I also wrote about this in Changing the Conversation.)
Generally, one of my biggest annoyances is toxic positivity, and that is the last thing I as a breast cancer patient need; however, I do need support rooted in validation and hope. If you need to learn the difference between behaviors cultivating validation and hope and those fostering toxic positivity, Sarah Schuster included A Helpful Chart to Explain the Difference Between ‘Support’ and Toxic Positivity in The Mighty. She cited the chart as coming from Whitney Hawkins Goodman, LMFT, @sitwithwhit on Instagram.
People who exhibit toxic positivity aren’t bad; they simply are a product of our society. According to Sylvie Leotin in Cancer is the Loneliest Place, “Speaking to a cancer patient is hard because, as a society, we are not good at being present with what we cannot fix. Our education prepares us to become fixers. Our culture rewards fixers. So when we come face-to-face with suffering we cannot fix, we are at loss. We continue to bestow fixing advice and platitudes because that’s all we know how to do.”
This is so true. As a career development specialist, I prepare students and alumnae/i for job interviews. I tell them to answer behavioral interview using the CAR Framework. C is for Context or Challenge, A is for Action, and R is for Result. If they don’t have a desirable result to share, it’s not a strong answer for a job interview.
But life is more than a job interview.
There’s our image, and there’s our identity. The image is public, and the identity is holistic. Our identity needs authentic support—which is rooted in love, critical thinking, creative thinking, validation, faith, and hope—that addresses nuances in a way that toxic positivity conveniently ignores.
What does authentic support look like? If you want a long and concrete example, I have one for you.
Exactly a week before my mastectomy, my friend texted me. For the sake of privacy, let’s call her Karla Taylor. She told me that her mother-in-law wanted to send me something so Karla asked for my address. Now I had never met or talked to her mother-in-law before, but I gave my address and said it was sweet of her to think to send me something.
Exactly a week after my mastectomy, I received a card from her mother-in-law. Let’s call her Angela Taylor. It is the card that you see in the photo of this post. It is a tri-fold card that on the cover says:
There is an illustration of a wreathe with a sun, daisies, other flowers, and leaves around these words.
After you completely unfold the card, the middle section has a small illustrated arch of sun, flowers, and leaves; under the arch, it says, “as you face one day at a time.”
Then before I even read Angela’s written message, I saw that she wrote me a note so long that she used all three inner sections of the tri-fold card. I wondered what a woman who never talked or met me before would have to say. She wrote this paragraph:
Dear Lindsay —
To introduce myself, I am [Karla Taylor’s] mother-in-law; Angela Taylor. During a recent conversation with Karla, I was mentioning breast cancer situations that 2 of my friends are facing. It was then Karla mentioned “her friend Lindsay.” I am a cancer (breast) survivor. My cancer was discovered in 2011—Sept. What I have learned during the years is: no breast cancer journeys are the same for the women—each experience with doctors, tests, biopsy, surgeries are different—recoveries are not the same—emotional reactions differ—meds taken give each woman a different reaction—acceptance of how our body has changed is not easy to accept etc, etc. Support groups work for some, (I was not one who participated in that) And so much more about how one’s journey differs from another. Your emotions are yours, and good news—your journey will be what YOU [she actually underlined “YOU” twice] decide you need and want!! And any emotion you feel or demonstrate—NEVER EVER do you have to apologize for. Ask questions of doctors, etc. Please know—I care, I understand, and I AM cheering for you!
So yeah, that’s one way to provide authentic support. I cried after I read the card. It was desperately needed after long day of physical pain and getting into arguments with loved ones about my healthcare decisions.
Later this week, one of my visiting nurses took my blood pressure and noted that it was getting gradually higher. After talking to me about my recovery process, she was concerned that the stress—which I had been having from ongoing arguments with loved ones about my healthcare and the general stress that any cancer patient would have—was contributing to my higher blood pressure. I thought she would leave the subject after a minute, but she wanted to talk to me about concrete ways that I could conserve my energy so that I could focus on healing. I let her know that I already had taken steps the day before to put down clear boundaries with loved ones. Yes, it included me yelling and crying A LOT, but (so far) people have backed down on providing unsolicited commentary and criticism of my medical choices.
So yeah, if you haven’t heard from me in two weeks, I’ve been processing all of that and so much more. I’d like to have some final deep thought for you at the end of this post, but I’m hungry for breakfast. I don’t feel like sacrificing my health and basic needs right now. I hope you do the same.