Alexa, disable gravity.
10.30.2021
“I haven’t had my period since Pfizer’s second shot, I have gained around 20 lbs since March, I am continuing to eat healthy but exercise tires me out quickly. There is a feeling of extreme exhaustion that I never experienced before”
Autoimmune specialist: It’s normal to feel that way during the pandemic as a working mother — you are not “feeling” exhausted, you ARE exhausted.
Rest of the conversation felt like a tiktok with “you are your own problem” questions… Have you tried switching your schedule? Have you tried a new work out routine? Have you tracked your macros? Have you tried positive thinking? Are you fishing for performance enhancing drugs? (OK, he didn’t say it out loud, I just deduced)
Eventually the conversation ended with a plan…
“While I rule out any autoimmune disease through four hundred blood tests, why don’t you go get a mammogram and pap-smear that’s overdue?” I am not a fan of blood tests, but I was not a fan of this extreme exhaustion either.
11.04.2021
“I haven’t had my period since Pfizer’s second shot, I have gained around 20 lbs since March, I am continuing to eat healthy but exercise tires me out quickly. There is a feeling of extreme exhaustion that I never experienced before” I repeat the story, hoping the same colored Ob-Gyn will help me find answers.
Ob-gyn: Same! I have gained weight too, and I can no longer wear my wedding ring (shows her necklace)
Mammogram — Done
Papsmear — Done
Cologuard — Done
We talk about my missing period, and the expert with medical degree deduces that I should be in menopause due to the pandemic stress levels. It felt weird to think that at the same age when my grandmother was having healthy babies, I was talking about menopause with my doctor. I wasn’t ready to give up on the act of nature without proper closure in my mid-forties but there wasn’t really much I could do than seek second opinion.
The mammogram technician wasn’t too pleased. She repeated her squeezing and plating acts while talking about dense breast tissue of colored women. I wasn’t a big fan of her skills or knowledge, but nodded my head in approval to get it over with and go home — there were bigger things to be done at work and at home than hear about the dense tissue in colored women leading to wrong interpretations. She told me that a radiologist will get in touch with my doctor with results, and we said our byes.
Period, apparently gone.
Wellness checks, done.
Mid November, 2021
Email notification popped up that the doctor had left a message on MyChart. I had to reset the password, but life was too busy to be wasting time on resetting passwords. Few days pass, and the doctor left a voicemail. I wanted to “half-listen” and get it over with, but she had asked me to follow-up with an ultrasound. She called it routine, probably nothing to worry about, but encouraged me to schedule it as soon as I can. I would have deleted the voicemail and moved on, because being “encouraged” always meant optional to me. But that afternoon a co-worker told to get everything done in the calendar year so that I can hit my maximum deductible. Otherwise I would be paying again next year.
Wise words, and I scheduled the ultrasound.
No, my husband scheduled it — he was more worried than I was.
11.30.2021
I love canceling medical appointments by acting important — whether it is as a parent, or as an architect. I can always claim that the day got away and I won’t be able to make it. I tried my best, but didn’t have any cheerleaders to “encourage” me to skip the appointment and prioritize work/life. We showed up, and had the ultrasound. It was a simple procedure with warm gowns and blankets swaddled around me. While I stared at the Armstrong 2x4 ceiling grid thinking about how experential design can enhance healthcare experiences, the radiologist came in to check a few things again.
That was the first red flag I noticed. It didn’t feel like a routine procedure anymore to rule out “certain things”. We were back at the hospital next day for an ultrasound-led biopsy of the tissue. And we were back again for the lymph node biopsy the day after.
The free fall had begun.
02.12.2021
Our daughter’s fifteenth birthday, AIA’s holiday party, office holiday lunch, and there I was faking a Tylenol laced smile in my compression-bra and holiday wear everywhere, pretending that life was normal, emotions were stable. But deep within, I was dazed and confused, not knowing how to feel, act or react to anything that was happening. The results of biopsies were due at the same time I had a very big presentation at, but this time there was no question on what the priority was. I wrote an excuse email to the board I was a part of, fully knowing that I would have all their support, but totally missing the stab in the back (which I will share at a later point)- While I was sitting at the doctor’s office waiting for her to read the results, the mind was everywhere but there. This was not where I wanted to be. This was not what I wanted to do. This is just not my life. But then the doctor walked in with —
Words that no one wants to hear.
“You have cancer” with the fakest of fake sympathies plastered on her face. I decided that I didn’t like her. There was something really off about her. If I could re-do the whole scene, I would cast another doctor for her role. She failed to deliver. To deliver my bad news. The worst news of my life. My immediate response was to tell her to give us privacy. I don’t know what I think my husband is capable of, but this almost felt like buying a home in Silicon Valley when we would ask for privacy while writing offers for last minute add-ons.
He is not a doctor, and this time the privacy just led to us reading the report together and trying to digest it as husband and wife, and what it would mean to our little family.
Since I had already “canceled” the doctor, the nurse helped us schedule MRI biopsies as well as Breast Surgeon appointments to work on a care plan. It felt like we were being taken care of, yet it felt so cold and unrelatable to be in that place. I grew up in the 90s watching cancer movies — death was romanticized. Doctors would deliver the news in her office to the best dressed lead.. the lead would then make the doctor promise that they would keep the cancer secret from the lover/ children/ spouse. The doctor would totally agree to that plan. Music fades in background… But in reality, I was with my husband dressed in a paper gown, sitting on the examination table. He was on a chair holding my hand. 2X2 Armstrong ceilings here too. Harsh lighting. No musical backdrop for my emotions. No herosim. This is it. You can cancer.
Also, the lump that they saw on MRI was so deep/ small, I couldn’t feel it with my bare hands. The lymph nodes were the same story too, it was hard to relate to a cancer that I couldn’t see or feel. The cloak of invisibility makes you question the existence — is this happening, or it is all a blur? Will I wake up sweating, and it will be midnight? What if I walk out of here on a journey to find myself in the Alaskan forests and eventually fade away?
What next?
“For me, becoming isn’t about arriving somewhere or achieving a certain aim. I see it instead as forward motion, a means of evolving, a way to reach continuously toward a better self. The journey doesn’t end.”
― Michelle Obama, Becoming
The journey doesn’t end. But instead of “becoming” I was on a path to “unbecoming” who I was, involuntarily evolving in survival mode.
Welcome to the journey of unbecoming, otherwise known as Stage 2 Breast Cancer — Metastatic. Soon I will be called strong and beautiful, fighter and a survivor. I won’t be able to relate to any of those words, but I will smile and nod. Meanwhile I continue to gain weight and feel extremely exhausted — except now no one tries to relate to my exhaustion.
