Everyone has an opinion. Just because they do, you do not need to listen. I believe this and it was recently reinforced by the great Dr Gabor Maté as he so eloquently stated during a webinar about healing, “listen to yourself.” In your gut and your heart, you will know what is best for you. Sometimes people can say things that are so vile, yet they have no idea how awful they’re being. Take a moment, step away from all distractions, get quiet and listen. Just because someone has a degree and extensive medical experience, they are not living in your body nor are they walking in your shoes. No one is omnipotent, omniscient, and omnipresent. Well, unless one’s title is “Saint.” (Slightly different story.) We should not be putting others on pedestals or looking at fellow mortals as if they were canonized. Listen to your own heart and try to cut out the extraneous noise.
My uncle, who is very much the patriarch of our family and universally loved, was diagnosed years ago with advanced stage colon cancer. He is also a very respected physician. There were years that he wanted to work but was undergoing extensive treatment that left him unable to endure the commute between my hometown on Western Long Island and the Upper East Side of Manhattan. Rather than sitting at home, he worked. My aunt, his wife and soulmate, dutifully drove him to and from his medical practice so that he could see patients. He persevered. He showed courage and humor even during the most trying times. He was pretty much given a death sentence, but sometimes the Almighty (or whatever you might believe in) has very different plans. Years later after being in good health for quite some time, he was ready to have his port removed. It had been in for about 6 years. His oncologist argued with him stating that my uncle had, “an incurable disease.”
Unca Dunca (as I call him) was like – I am done with this thing. Anyone who has had a port knows that they are awful. They are so uncomfortable. Mine was so visible and made me feel awkward. (I was told that it was easy to see because I was not “fluffy”). In any case, he went against doctor’s orders and had it removed. Since then, he reaches out to this doctor on a semi-annual basis to say, “I am still alive.” This other man is his peer. Said peer has not responded to numerous emails and voicemails. I hope that my uncle continues to reach out with that reminder of “I’m still here.” Which underscores that this doctor is still wrong.
Seeing my uncle’s strength, courage, resilience, all around fortitude was not only inspiring, but helped me to model the way in which I approached my healing journey.
When my mom and my aunt (mom’s sister and the one mentioned above) found that 4 sessions of chemotherapy would be included in my treatment protocol, they pretty much begged me to leave Florida and come back to New York as they felt that the cancer facilities in NY would be superior and I would not be alone. Most of my closest friends were and are in faraway places like California and in NY along with almost all of my family. “You can bring the cat and live in Auntie’s basement.” My response was empathically NO. I was in the process of building a new townhouse (as a first-time homeowner). I did not want to uproot my life or my cat who was very happy in our spacious apartment. Also, I did not want to have to temporarily pay New York state taxes either. No thanks. My cousin was also convinced that a bad version of ET was residing in the basement. Yikes. I knew that it would be best for me to stay in my own home where I felt comfortable. Fortunately, the chemotherapy (aside from the hair loss) was not too bad physically. The anti-nausea meds worked very quickly when needed. I rested when my body dictated it. I lived my life on my terms.
Quite a few people also tried to tell me not to be in the hot yoga room. One of them was even a yoga instructor who had to stop teaching when his health deteriorated the following year. I did my research. At my mom’s urging, I spoke to my oncologist who told that there were “no restrictions” and to just listen to my body. I also knew being in that room with the community that I connected with would be so beneficial to me - mind, body, and soul. I also said to myself that if it was ever too much that I would sit on my mat or lie down in savasana. The same advice that I give to students who need a break. It was best thing for me. I was able to calm my body and quiet my mind. Practicing that yoga helped me to remind myself that despite this diagnosis I was still alive. Don’t get me wrong, there were quite a few times after class that I needed to just sit for a bit and recalibrate. But it was just what I needed as I knew in my heart.
Another piece of advice that many tried to give me was to take an extended leave of absence from my day job. Maybe a little time off other than the day or my lumpectomy and the 4 days that I got chemo would have been helpful, but at the time I did not feel like taking an extended leave was right for me. Everyone is different. As mentioned in an earlier essay, I did have some trepidation about my job stability thanks to the not so kind account lead. However, legally, I was fully entitled to take the time that I needed. I also knew that if I was just hanging out in my apartment alone with my cat with nothing to do but Neflix and chill, I would go a little stir crazy. I know myself very well. Mandy needs to be occupied and stimulated. I did work from home so I could be in my pjs if I felt like it and rest if I needed it. Being a remote worker allowed me a lot of flexibility that is not there when grueling commutes and congested offices are involved.
I do sit and reflect as to whether I should have taken a little more time. Even with hindsight being 20/20, I am still a little conflicted. I was dealing with a lot of fear and anxiety – those emotions definitely fueled my decision-making process. However, there is also this part of me that has trouble just chilling. Even now having a daily prayer and meditation practice, there is often the impetus to go, go, and that I am not doing enough. I am a type A personality through and through. I am also someone who was not giving herself a lot the necessary self-love and compassion and grace. Like many other survivors, I also felt like I had to prove to myself and to everyone else that I could do this. That I could do this alone. That I could push through and conquer. Somewhat admirable maybe but propelled by fear and other icky emotions. Again, this was a decision that I made. I can ponder it for a long time to come, but what is in the past is already done. I must remind myself that I am human and a work in progress.
This tidbit was not so much advice, but just some pretty awful commentary. A “friend” came to visit me shortly after I completed chemotherapy. She said that she wanted to take care of me. Other than being bald, I was totally fine. Her true colors came out during that visit. They were not pretty. She was feeling a bit self-conscious as she put on a little bit of weight. She tried to make a direct comparison between her feeling a little chunky and my insecurity about being bald. It didn’t work. The day before she left Florida, she wanted to go shopping. We drove north to some premium outlets. At one store, we spotted a dress that was my style. I tried it on in an extra small, which was probably the first thing that upset her. She saw me in the dress and said, “you look so good. You’re so thin. Give me some of that cancer.” If I didn’t vomit from chemo, this might be the time. Watch out, she is going to hurl.
If you are reading this and thinking about a way to best support someone, I would avoid making statements like this person did at all costs. Do we sometimes make mistakes and say the wrong thing, yes, of course. We are human beings. If I wasn’t in shock and so conflict avoidant, I would have sat this person down to tell her that this is not the journey that one takes to be skinny. Most of us would rather take a few extra pounds, hair on our heads, and a clean bill of health over being really thin. I would have also told her words of jealousy were so hurtful and really made me want nothing to do with her. Oh, well, hindsight…
Onto happier topics… As you might have guessed, yoga has been hugely important to me and still continues to be. Early in 2023, one of my close friends and I signed up and paid for a yoga retreat near Cancun, Mexico. We attended the same retreat the previous year, had a great time, and wanted to go back. The retreat was scheduled close to Christmas 2023 (as it was the year before). There were many people saying – don’t do it, don’t get on a plane, don’t go to another country, blah, blah, blah, whomp, whomp. Where is Charlie Brown’s teacher? My brother who lovingly joined me for my second and final chemotherapy sessions even argued with my oncologist about it. The doctor explained that I would have more than 6 weeks between the completion of this part of treatment and the retreat. My mind was made up, but it was also backed by science.
The night before I was supposed to leave in mid-December 2023, I was feeling a little crampy. I went to the bathroom. I was shocked -- It was my period. I was told that the chemo would send me into early menopause. Well, it did not. I surprisingly got my period once during chemotherapy to which I was told that it would be the last time. I started to mentally prepare myself for menopause. Prior to this diagnosis, I had been on birth control for about 20 years due to PCOS. (As it is so hard to diagnosis, I’m not sure if that is really what it was.) Being on the birth control pill for that duration of time could have contributed to my breast cancer diagnosis. (Will I ever get a concrete answer on this one from a physician? Doubtful.) Before I started taking the pill, I was in constant pain, never had a regular and predictable cycle, and when it came it was BAD. Here I am more than 2 years following completion of chemotherapy, and I have had a consistently regular menstrual cycle. This is the longest period (maybe pun intended) of regular cycles in my entire life. I even track it on a calendar so that I know when it is best for me from a hormonal standpoint so that I can schedule scans one to two months out.
Despite Aunt Flo coming to town and the noise beforehand, I still went to Mexico. Not too surprisingly, my yoga buddy was on a similar cycle. The retreat was awesome. Lots of yoga. A sweat lodge experience. A magical excursion to Chichen Itza. Many trips were made to the center of town so that I could get my hibiscus tea drink. There was a whole lot of guacamole consumed. And clothes shopping too. Every night we would walk to town so that I could get diary free gelato. I came home refreshed and renewed. And almost ready to start radiation. When I went to the oncologist for a Herceptin infusion shortly after, my blood work was excellent. The trip proved to be the best thing (as I knew it would be) for my mind, body, and soul.
Ready or not, in early 2024 I started radiation. It was kind of grueling. I had to drive 30 miles roundtrip Monday through Friday for 6.5 weeks, usually first thing in the morning to take off my top and get blasted for 10 minutes while doing special breathing exercises to mitigate damage to my heart. Around the 5th week, I started feeling pretty awful, really run down, extremely depressed, and noticed a painful rash on my upper left thigh. It was possibly the second coming of shingles requiring antiviral medication. As I was feeling better, I went for an evening snack with a fellow survivor. She shared with me rather nonchalantly that the only way to avoid being back on the surgeon’s table in a few years was a double mastectomy. Ouch. I thought that we were on the same team.
This commentary sent me into a bit of a tailspin. I had a lumpectomy – simple outpatient procedure and was able to get an iced coffee immediately upon release from the hospital. I went through a few rounds of chemo and lost not only the hair on my head but most of my eyebrows and eyelashes. I essentially flashed 3-4 radiation technicians for close to 2 months. My skin felt like it was on fire and I ended up with an awful viral rash. I had a port in my chest and was looking at another 7 months of Herceptin. And here she is telling me that despite all of that I was essentially screwed?! Time to take a deep breath or 25. Also, it is so important to set up protective boundaries for one’s heart and sanity.
Which leads me to Sunday at Whole Foods. After a very intense and rather humid hot yoga class, I was in desperate need of major hydration. Give me an immunity boosting shot and every beverage with all of the electrolytes. As I walking through this store, this woman stopped and complimented the dress that I was wearing. I thanked her and mentioned that the dress was from Old Navy (love that store) and was probably 8 years old. Her response, “Just keep your weight down and you’ll be able to wear it for many years to come.” I smiled, nodded, and then continued my search to quench my thirst. Thanks for your concern about my waistline and my wardrobe. I am going to do the best that I can to take care of myself so that I can be as healthy as possible.
So, as you’ve seen, everyone has an opinion and they love sharing them without solicitation. What is best for some is not best for all. I need to be the one to know that I did what was right for me. And not anyone else. You need to know what is going to work best for you. Other people can say whatever and they will likely/definitely do so. I’ve learned (the hard way) that most people lack a great deal of emotional intelligence and a filter between their brains and their mouths. We need to protect our minds and hearts with solid non-negotiable boundaries. Despite the utmost in self-love and self-care, sometimes stuff really stings. We’re human. When we take that time to get quiet and be with our thoughts, please try and make sure that they are kind and based on love and not fear. How we show up for ourselves has a direct impact on how we interact with others. Let’s try to focus on compassion first and foremost. And always remember to breathe.
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