Welcome. My name is Kara. This is the first in what I plan to be a series of articles about my journey with endometrial cancer. I am writing openly and honestly about this subject because women’s health – even in the 21st century – is still not taken seriously – even sometimes by the women themselves. I also have found the lived experience of others to be helpful, and so if my story can be helpful to share with someone else, I’ll share it loud and proud.
Before you read on, I’m going to speak openly and honestly, from my lived experience, about female anatomy, actual things women face, and medical treatments and conditions. If this makes you uncomfortable, please read some of my other writing. My newsletter would be great for you.
With that out of the way, let’s talk about the most immediate events that brought us to the C word.
I turned 49 years old on October 8, 2023. This birthday was one unlike any other – or at least I hope it’s unlike any other. For this birthday, the thing that topped my list was to NOT have cancer. I didn’t get what I asked for. Instead, I got an official diagnosis just three days before my birthday.
THE DIAGNOSIS
If you follow my newsletter, you know in late September 2023, I went to the ER after nearly passing out. The date was September 20, and I passed out due to heavy vaginal bleeding with severe clots, which caused anemia. The anemia – which I’ve suffered with before in previous battles with my uterus – probably (hopefully) saved my life. Had I not passed out, I might have continued to ignore the messages my body was sending me and not sought medical treatment right away.
While in the ER, they performed blood work, urinalysis, and an internal and external ultrasound. A gynecologist I’ve worked with before was consulted and changed out my hormone pill to try to slow/stop the bleeding, I was put on iron for the anemia, and sent home with direction to follow up with the GYN office.
On September 25, I saw the GYN, and she wanted to perform a D & C in the office to collect samples. I refused and wanted to be anesthetized for the procedure. We were able to schedule for October 2, 2023, which, as I write this, was this past Monday.
My sister Susie accompanied me to the procedure on the 2nd. More blood was drawn, and then I went back for the procedure. Of course, they did a pregnancy test too. I thankfully don’t remember anything much after lying down on the procedure table until waking up as I was being wheeled from recovery back to my room. My GYN doc came in not long after Susie rejoined me. The doc said they’d removed a cyst from my cervix and had been able to look at a frozen section of it during surgery, and it showed malignancy. This was preliminary, and we’d have the results back in about a week from the pathology. She may or may not have said I had cancer right then. I’m not really sure. I was released to go home later that day with some minor discomfort and instructions to use over the counter pain meds and to call if anything seemed off.
While I waited, I reached out to the GYN through the electronic portal for my health care system. I wanted to get a referral to the oncologist rather than waiting until either the pathology results were back OR the follow-up I had scheduled with her occurred. That follow up isn’t until October 24. She confirmed the oncologist I’d chosen was who she would recommend and made the referral. I called the oncologist office and then waited more than 24 hours for a call back. They made an appointment for October 23 - the first available they had (supposedly).
Waiting for results feels like an eternity, especially when those potential results carry life and death consequences. While I’d taken the action I could by being proactive about getting the oncology appointment as soon as possible, my brain was a swirly whirly mess when I slowed down long enough to think about it.
Thursday, October 5 was rainy and cool. I had gotten my flu and COVID-19 boosters the day before, so I couldn’t comfortably lift my arms up over my head due to injection site pain. I felt tired, and my anxiety was at a 200/10. Furthermore, I had already followed up with the oncologist office to get an appointment, but the earliest I could see him was October 23. So, I just had to wait. Midday on Thursday, I got the pathology results which confirmed endometrial cancer, but had the first note of how severe it was – it was a grade 1. I breathed as much of a sigh of relief as one can breathe when you have a cancer diagnosis. Everything I’ve read and everyone I’ve talked to, including the GYN who called later that day and said the same thing, is that this is treatable by hysterectomy and very possibly will need no additional treatment. Unfortunately, while I was trying to relax, I'd apparently overtaxed my body that day. Just after Gayle got home from work, I nearly/did pass out. She called 911 and we got to see first hand the excellent response time by the Noblesville and Westfield EMS/Medic teams. Another, fortunately quick, trip to the ER and I now have yet another follow up on October 11 with my Primary Care Provider. It doesn't appear anything is really wrong - well except for cancer and my overactive brain - but they want to see me anyway.
THE GOOD NEWS
The good news in this is that the cancer is a grade 1 endometrial cancer. Based on what we know currently, I will be treated through a hysterectomy, and it is highly possible that there won’t be a need for any radiation or chemotherapy or other supplemental treatment. The optimistic side of me, who honestly is struggling just to stay awake right now, keeps trying to focus on this fact and the fact that this is a surgery I was planning to have anyway.
THE OTHER NEWS
I’m not seeing bad news at the moment. I’m just refusing to do so.
However, there are things I’m navigating as I go through all of this.
First, I want to tell my story publicly but also let my family and friends deal with the grief, worry, and concern that comes with a diagnosis like this as privately as they require. That’s a hard balance to maintain.
Second, I’m so happy to be a small business owner and business has been great. That said, I’m worrying (which turns into over-planning and over communicating for me) about how to balance all of that and stay afloat through all of this. Financially, I remain pretty sound, but you hear about catastrophic medical conditions destroying carefully built nest eggs.
That leads us to the third bit of other news, which is I’m insured via the Healthcare.gov marketplace. I’m “grateful” it exists, which is a loaded thing to say because the fact that to have insurance in the US means you need to work for some sort of corporation is pretty idiotic. That said, I have been happy with my insurance so far. But, because I needed one more thing this week, I got notice that the plan I currently have won’t be offered through the marketplace next year. So I’ll be navigating a new plan potentially as I navigate recovery from a potentially deadly diagnosis.
THE STORIES I PLAN TO TELL HERE
I’ve made a preliminary list of the stories I think are important to me to tell. I write as much for my healing and comfort as I do for anyone else’s needs. That said, I’ve been incredibly blessed with numerous friends who have come forward to offer their stories and their support. And so, I’m going to share as much publicly as I feel comfortable with.
Here is a quick overview of that list I've made of things I've been researching and journaling a lot about lately that may turn into articles. I welcome your interest in and questions and comments on these, as well as other related stories and topics.
How We Got Here – My Health History: Project Health, the Warning Signs, and the Regrets
Mental Health and a major diagnosis
Personal advocacy in the healthcare system
Balancing my need to tell my story and my family’s privacy
The Primary Care Physician’s role in all of this
Navigating the medical landscape in the US
Health systems
Docs and specialists
Insurance
Treatment plan
Where to From Here – Next Steps after treatment
Being self-employed and dealing with a major diagnosis
The worries/risks of sharing a story like this so publicly while you run a business.
Women ignoring their health signals
Doctors discounting women’s pain and health signals
The hero's – Praise for nurses, EMTs, and Paramedics
How I’m managing all the information in my Facts of Life Book and Obsidian
How You Can Support Me
Most importantly, I welcome your prayers and your positive energy. Funny notes, texts and notes of support, and your good thoughts are the best medicine I can ask for. I've never been particularly good at this form of outreach and one of the most important lessons I'm learning is how important it is and how I need to do better in this area.
If you want to support me monetarily, you can do so directly at my Ko-Fi Page. That said, one of the most important things to me is that we all learn and grow together - and for that in this situation - there is no better tool than my Facts of Life Book. My Facts of Life Book has come in so handy during this entire process - and if I can muster it - I'm going to re-release the course in my new Circle Community before I have surgery. If you want to get in now, you can buy just the course and that small community (one time, $150) or you can get access to my entire community including all the courses I offer now and in the future and all events and posts ($8/mo or $80/year).
📰 Finally, want to make sure you never miss a story from me? Subscribe to my newsletter. I send out a fresh new article and do a round up of everything I published that week. It is released for free every Monday morning.
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