Have to write my story down on the chance that someone out there can help me give us hope
The Diagnosis
My mom was diagnosed in October 2020 with high grade serous carcinoma Stage 3C.
She underwent 6 lines of treatment, and was NED between the periods of Jan 2021 to Jan 2023. Since her recurrences, she keeps undergoing more and more treatment which seems to work for a time, but she always eventually progresses again within 2-3 months.
She has since then begun another clinical trial, phase 1 trial of BLM07D1(HER2 ADC).
My situation
We are a Chinese immigrant family (I and my sibling were born in the US). My mom is the utter epitome of a selfless individual. She worked 3 jobs as the major breadwinner and household-keeper of my family. She didn’t take a single weekend off for as long as I knew her. My dad struggled with mental health issues and although he also had a job, he was not even earning a third of what my mom was. Everything I have in my life, I owe to her. She even worked in nursing homes for a lot of her life, so she has seen a lot of death herself firsthand. She had always told me that she was not afraid of death. Even when she was first diagnosed she seemed rather blase or even dismissive about it (“if I die, I die”) but she did seem to have a change of heart a few years ago and decided to fight. She even worked remotely though COVID (she worked in healthcare) whilst she was battling the cancer.
Throughout this diagnosis, I have tried to get my mom to come to acceptance with her diagnosis and “live life to the fullest” as I have seen so many cancer patients say again and again. But she seems to have thrown herself into “fighting csncer” with the same vigor and energy as she has put towards her job(s) her entire life. So much so that I actually feel like she forgot to live. Nearly every day since her diagnosis has been confirmed with eating cancer, living and breathing cancer, talking to her “cancer friends”.
She completely changed her diet (mostly plant based). She exercises and walks every single day, without fail. She takes al the supposed cancer-fighting supplements. She has been as diligent as is possible, enduring all of the awful side effects of chemo and other treatments with stoicness. But she has started to falter. We are active in online FB cancer communities and I remember her writing a post that broke my heart - that she was feeling “hopeless and helpless because I have worked so hard to fight.” And she did! She fought so so hard all her life - for her family and for me and my brother- and she got what she wanted - we have really good high paying jobs, great education, and she applied that same logic to her cancer and yet she still wants to “win the battle” - her words - even though the doctors have told her it’s not curable at this stage and she understands.
I was so worried about her mental health that I got her a therapist who specializes in serious diseases but although he is extremely skilled and quite famous as a celebrity therapist I feel she is not spiritual enough to be a good fit for almost any therapy. Recently she requested that we stop sessions because she said that she’s too in pain every day managing her symptoms. I’m desperately afraid that this is the end for her. She was in the hospital for 10 days because of abdominal pain and her bowels weren’t moving. No real cause, just vague “cancer symptoms” which I freaking hated. I hated that her doctors weren’t able to give a clear reason for everything and anything. I hate that her oncologist although super kind, is super by-the -book. I want a research scientist, someone who can scour the earth and find the treatment that’s going to work for her (yes, I am totally aware of what “working” means or might not mean in this context and I would just be prolonging her life). But we must be able to land upon the perfect storm of solutions that will be her miracle solution.
She is being treated at DB in Boston and we got a second opinion at MD Anderson. Through my work I can even get an expedited third opinion at Sloan Kettering. I will knock on every single door of every cancer hospital in the country if I have to to get my mom another year if that’s what she wants, and she still wants to. She says she still had the energy to fight even though she’s in so much pain every day. I’m terrified this is the end for her even though she wants to still go for it.
Why does it have to be like this? Why her? Can we still turn things around even though she’s platinum resistant and her clinical trials haven’t produced good results for us? I’m not in denial, her primary oncologist told me privately that she thinks her prognosis from now is less than a year but I think my mom can beat that with her iron will. But why does it have to be so, so unfair? My beautiful mom, who read every cancer book and willed her body to exercise every day, who has access to what people say are the best cancer hospitals in the country, why can’t we do better by her?
This turned into a rant but I’m just so crushed. Words can’t even put into words how heartbroken I am. I wanted so badly to take my whole family to Japan this October just like she’s always wanted (and to put her and my dad on their first business class flight ever) but now I’m so sad that she won’t be able to make it. Please please, if it’s the last damn thing on this earth that I do, please let us all make it to Japan together as a family.
My company agreed to relocate me back to the US (i live in Asia) so that I could care for her but I’m terrified that she’s not even going to make it the next 3 weeks before I’m back by her side