“In A Spirit of Joy And Duty”

“…in a spirit of joy and duty” – His Eminence Archbishop Elpidophoros of the Greek Orthodox Church of America 

Week 5: How is it already 5 weeks and a day since my hysterectomy?!?

And how is it already 24 days since I learned I have uLMS (uterine leiomyosarcoma)?!?

Oh, and how is it I’m still in this much pain and this extra-extraordinarily fatigued?….

This week has been filled with many more roller coaster rides.

The drive down to see the new Gynecological Oncologist last Friday was lovely, full of evergreen views and the good company of my best friend/partner.

The visit was truly night and day from the first oncologist visit in all the best ways.

My husband dropped me off at the entrance with my walker while he went to find parking. An elderly gentleman who is a hospital volunteer came over to ask where I was heading and finding out it was the cancer clinic he hung out chatting me up while I waited. He then not only walked us down the hall to the elevators, he rode up to the 11th floor with us and walked me all the way to the check in desk.

I’d no sooner been handed paperwork to fill out than the medical assistant took me back to the room. The assistant was welcoming and helpful and turns out I only needed to fill out one form assessing stress and support needs for the social work staff – she had everything else already in their system. Always nice to have less paperwork!

When the doctor came in I explained to her that I am autistic and a trauma survivor – these two things both mean that I need nothing but absolute honesty from her. I told her I am pragmatic by nature and that, no matter how scary whatever the news is, I will always need to hear the absolute truth from her during this journey. 

Her response?

Absolute agreement and a commitment to tell me everything – no matter how hard it is to hear.

And we did hear something incredibly hard and frightening to hear:

60-70% of leiomyosarcoma patients will have a recurrence of disease within the first 8-18 months of diagnosis.

That one sure took the wind out of my sails.

Later that night while we decompressed with each other I learned it hit my partner like a bag of bricks to his belly as well.

We went over my Sept 9 CT scan results and they are concerning but not alarming: there is a 5.1cm area lighting up but it is my vaginal cuff and the doctor explained that the healing happening there from that August 15 hysterectomy may possibly explain 100% of that.

She also explained that because of my hysterectomy being so recent she wants to wait a month to do a physical internal examination to give those sutures time to finish healing. That appointment will be October 11th.

She wants me to have another CT scan two weeks after that one.

It sounds like if that 2nd scan AND the internal exam are both clear, she’ll be recommending CT scans at least every 3 months for the next few years.

She never made me feel rushed or like I was being a bother. In fact, after she’d stood up to leave and I also stood up, I said I had another question and sat back door to gather my thoughts and SHE SAT BACK DOWN TOO, which only made me feel even safer and unrushed and cared for.

Before we’d even left the city a social worker had called and left me a message.

That first cancer clinic? I was never asked about stress and/or support needs, nor did I hear from a social worker.

Night and day.

It doesn’t be like that, but it is and I’m glad I honored my need to feel safe in my treatment with this and reached out to this new clinic.

My weekend was spent in bed (again/as usual) recovering from the trip as best I could. I enjoyed reading and watching history and science videos on Youtube, and some right proper naps too.

Tuesday it all just hit me again so hard.

I found myself laying here in bed sobbing, worrying about leaving my partner and our daughter, worrying about the dog, worrying.worrying.grieving a bit too.

Tuesday is therapy day.

Now, I’ve worked with this therapist on and off since 2018. She knows me so well. She’s actually the one who brought me into awareness of my autism.

This was the first session where I just cried and sobbed … in six years.

Guess I finally feel soft and safe enough to let go of that iron grip I try to keep on expressing vulnerability in front of others – growing up with a narcissist for a mother will do that to a person, especially those of us who are born on the softer, gentler side of temperaments.

Growing up with a narcissist for a mother can afford one many, many coping skills – not all of them positive but, hey, we survived!

I plan to continue surviving.

Oh, speaking of surviving, I forgot to tell you how the last song I got to sing along to on the radio during my drive to therapy this week was Gloria Gaynor’s I Will Survive and oh boy did I ever sing along with intensity to that classic. Such a good, strong song:

If you’ve not heard the Cake cover of I Will Survive, please do yourself a favor and listen now. <3
I’m most assuredly not mad about this cover:

I wish I could find my car cd case with all my Jack Johnson cd’s because singing along to those is my happy place while driving :/

So, anyway, when I got home from therapy on Tuesday I fed the dog and took her out, showered and literally collapsed into bed by 5:30 — and was so fatigued, worn out and weak from the day I couldn’t move until my partner got home 3 hours later and helped me. Thank goodness my bladder has so much more room without that pesky uterus situation taking up space!

I’ve joined an online support group for leiomyosarcoma patients/survivors. In there I learned that there are actually sarcoma speciality clinics and one of them is just 90 miles away! I’ve put in a call to get the ball rolling on being seen there.

This cancer, uterine leiomyosarcoma, affects only 0.36 – 0.65 out of a 100,000 people with uteruses.

It doesn’t get much more rare than that.

I hope things work out so I can get in there and have at least a solid second opinion based on lived, clinical expertise in rare cancers like mine. 

My love is doing his best to convince me to do even less than I already do so my body has as much energy as possible to fight this cancer. I’m doing my best to lower my activity levels because he’s right and I want to live and having ME/CFS means my body spends way more energy doing any.single.thing than ‘normal’ bodies do…

I want to grow into a cheerful old woman with him, he’s such a lovely human to love and be loved by. 

Wednesday was a check-in with my Psychiatrist where I found myself passionately explaining to his assistant how if she or her friends ever have any uterine fibroids located within the walls of their uterus that they need to advocate for those to be biopsied asap. 

I mean, come on, in the exactly three months between my vaginal ultrasound and my hysterectomy, my tumor grew from 2.1cm to 7.5cm and that is not unheard of with this cancer. 

In talking with my Psychiatrist, I shared something I’d heard said during the benediction on the first night of this year’s Democratic National Convention:

“…in a spirit of joy and duty” – His Eminence Archbishop Elpidophoros of the Greek Orthodox Church of America 

I’m finding my way into understanding that no matter what, I still want to live my life from a “…in a spirit of joy and duty” and that part of that is going to include me writing about uLMS in as many places as I can get published in to help raise awareness.

Remember, the 5 year survival rate for this cancer caught at stage 1 is 75%, but if caught at stage 2 it is only 20% — raising awareness could help other people advocate for themselves and live longer.

That feels pretty worthy of my limited energy.

For now, I’m going to hit publish and lay down for a bit before I have that first (virtual) appointment with the cancer social worker this afternoon.

Love,

Kat

P.S. While prepping this blog post I got a call back from the Sarcoma clinic – I have an appointment on Oct. 2nd with a doctor who actually specializes in my rare cancer AND our appointment will happen right after the tumor board meets to go over my case!!!! 

I’m feeling the most hopeful I’ve felt since Googling this damn cancer on August 28th.