We are honored to share this post from recent chat guest Adrienne @AdrienneEcana who is a survivor of both endometrial cancer and ovarian cancer. She is a patient advocate and serves as an ambassador for the Endometrial Cancer Action Network for African Americans (ECANA).
Recently I was a guest for a live chat with #gyncsm (Gynecologic Cancer Social Media). I was honored to be asked because I had never done a live chat before, so I spent the day before writing and re-writing my answers to frame them correctly. I had a lot I wanted to say about how I felt my journey to diagnosis took longer than it needed to. I wanted to speak about how the invisible barriers that kept me from getting diagnosed sooner were just as important as the evident ones. But I soon found out that a tweet chat was not a platform that would readily support the way I wanted to tell my story. Even though I prepared for it, I quickly became flustered and started to feel a little inadequate by the lack of depth in my responses. So instead of trying to paint the bigger picture, I defaulted to one or two line answers that did little to bolster the points I was trying to make. My lack of familiarity in this space had me at a disadvantage and I couldn’t help but think that this was exactly how my cancer journey began. The countless doctors, gynecologist and emergency physicians that I readily opened my stir up supported legs to made little space for me to do the same with my mouth. My time there was always rushed and my words tripped over each other coming as I tried to describe how I felt about the changes my body was taking me through. It was dizzying.
In 2015, my body started authoring a story of menorrhagia confusion that left my head spinning. I never knew what to expect month to month. I began seeing a myriad of doctors but their level of concern never seemed to match my own. And each time I had left from being in front of one doctor with no answers, it would only leave me with more angst about having to seek out another. So, as I went from doctor’s offices to emergency rooms trying to string together words, dates, times and events that would give my story effective credibility, I began to realize that it just wasn’t going to be enough. The fact that my father died of colon cancer wasn’t enough. The fact that I had had a history of ovarian cancer wasn’t enough. The fact that I had been missing periods for months and they would then be marked by heavy bleeding for days wasn’t enough. The fact that it was almost always accompanied by debilitating pain that kept me out of work wasn’t enough. It only became enough when on March 28th 2016 I declared “This is enough”!!
I was away on a week long job orientation where the employer offered me health insurance day one of the job. I was ecstatic because I had lost insurance coverage with my previous employer of five years after the ACA allowed for businesses with less than 50 employees to have their workers find “affordable” care on the exchange. To make it work the Home Health and DME company had to separate into a two part business. The home health or nursing side kept their insurance because they had more employees but the DME side I was on was sent to the exchange. I was a young 40 something with pre-existing conditions and no dependents. It turned out to not be so affordable for me so I went without. On day two of my orientation, I woke up that morning met with a heavy flow of menstrual blood and I knew two things. The first was that I had had enough of the guessing game and two I finally had insurance to put it to an end. Admittedly, I was scared. It felt ominous and foreboding somehow, I knew this period was different because I hadn’t had one in months. I was told I was peri-menopausal and that my flows would become lighter and lighter. This didn’t look or feel like that all. For days I bled so heavily it soaked through two pads and my undergarments. Honestly, it felt more like I was having a miscarriage. Weeks later, when I was finally able to see a specialist, I was still bleeding. Despite the level of discomfort that it came with, I asked to have an internal exam anyway and held my breath listening for the words I knew would come. I breathed a sigh of relief as she said “I think it's time to schedule an ultrasound and biopsy to see if there is a possibility of cancer”. Somebody finally said it. Relief flooded over me after knowing that I wasn’t going to be coaxed or eased out the door by another conversation about fibroids or peri- menopause. For the first time I was being educated on how my high risk history coupled with my symptoms was more than likely the beginnings of what has now become my cancer chronicle. For months I had been trying to make my symptoms mean something to someone and this is what it took for someone to go the extra mile. Was it having the right amount of blood? Having the right amount of insurance or finally having the right doctor? Maybe it was the combination of all three met with the right amount of determination in my voice that this time I wasn’t walking away without a clear plan of action.
The story I’m telling however is not a new one. It’s been told by numerous others before me. So I am just one of many and whether by default or design, black women tend to share the common problem of aggregation when it comes to their reproductive health. Most of us at one time or another have been told that the culprit behind our monthly state of misery was due to the high incidence of fibroids that occur in our community. That it was likely due to our diet or DNA. We walked away with never any real plan of treatment and it was a risk factor we learned to accept even against our own self interest and to sometimes our own detriment. But for now, for me at least, I’d get some answers. Though I knew it would be nothing that I’d want to hear, I did take some solace in knowing that all the pain, all the abnormal bleeding, all the bloating and unpredictability had a name.
I was diagnosed with Endometrial Cancer stage IIIC in June 2016. I had a full hysterectomy that month to be followed by 6 rounds of carbo/taxol and 25 rounds of pelvic radiation. It’s funny that I felt almost relieved; knowing what treatment I was going to have to face felt less problematic than getting to that point. There is a settling that happens in resolution. It’s the not knowing that’s troublesome and my mind still tends to grapple with the one big problem throughout the beginning of my journey; the absence of any real urgency around what I now know were early symptoms of cancerous changes happening inside of my uterus. This begs the question of how could life threatening changes hide in plain sight from the very people I trusted to know what was going on when I didn’t have a name for it? To that end, I don’t think of it as an incidence to which one should apply blame. Only that it was a series of missed opportunities to engage in a power sharing conversation about my reproductive health and the direction of how my plan of care should evolve.
Now, in hindsight, I try to think about what more I could have done to have enriched those conversations. How I could have been more educated about endometrial cancer to where I would have been able to initiate the conversation about my own risks. If I had, would that have changed the dynamic? Would those uterine fibroids and ovarian cysts that appeared on ultrasounds somehow be seen as more menacing to the specialists? Would the heavy bleeding be given more thought provoking responses because I came more equipped in how to talk about it? Did I miss my window of opportunity by trying to paint the bigger picture when I was the bigger picture? I should have challenged them to see me, forced them to hear me, cajoled them into believing me. But if showing up as my Black self, with my high risks and cancer history; laying down my father’s death to colon cancer hadn’t gotten their attention there was not much left. Months of concern that drug me in and out of doctors offices remained void of validation that would have opened doors for questions I never considered before I had to jump feet first into the battle of my life.
As I am writing this, I realize that advocating for myself is where I should have prepared better. It’s where I should have recognized that the barriers weren’t invisible at all. They were all just the metaphorical walls of communication waiting to be scaled by my determination to fight for my reproductive health. I can see now that my cancer journey began long before I was ever diagnosed and had I known, I would have prepared for it the way I prepared for that tweet chat. I would have stated and re-stated all the important points first, using my space more wisely. I wouldn’t rush myself or care how long it took, I only would have cared that I was heard.
