Patient 3155175 is Me

 

I have cancer. Advanced ovarian cancer. 

It’s hard to put those words together. It’s hard to believe this is real.  

What I want is to believe is that I’m still in the hospital, groggy from the anesthesia that hasn’t worn off yet. I want to be in an altered state where it’s just the fear talking, a conditioned trauma response sending me to catastrophic thinking. 

 I don’t want this diagnosis.

 I want this to be a bad dream.  

hospital

Prior to the surgery, the ob/gyn suspected I had a torsed cyst. 

She explained that cancer is sticky and angry. It doesn’t tend to torse or twist, which is what my cyst seemed to do when it drove me to the ER the previous month with vomiting and abdominal and pelvic pain. It sounded like a “classic torsion,” she said and explained how the ovaries, when damaged or dying, can elevate the CA-125 (a cancer marker). Mine was elevated, but not that much. "It's not crazy high," a nurse had said.

Because I’m me, I still worried. I asked three medical people, “So on the off chance it’s cancer, can I assume it’s early stages?” If I can plan for the worst, and the worst seems manageable, I feel better.

They all said yes. They all said that if it was cancer, it was safe to assume it was in its early stages. That was reassuring. If a cyst was causing an early ovarian cancer diagnosis, I could still see a way to o.k, because the prognosis for ovarian cancer, when caught early, is good. The prognosis, when caught later, as was the case for my grandmother, is usually not good. 

But no one promises anything, and my surgeon didn’t either. As the first ob/gyn had said, “images are still just images,” and can’t show everything. My surgeon said she couldn’t say for sure what was going on without going in. However, her hunch was that I had a torsed cyst and had “hope of hopes” was that it was not cancer. 

Not cancer.

That’s the diagnosis I wanted.

But it’s not the one I have.

There are several types of ovarian cancer, and within the types, there are high and low-grade tumors, tumors at different stages with or without genetic mutations, and varied treatment approaches. Mine is a high-grade serous ovarian cancer (HGSOC), with a  STIC (serous tubal intraepithelial carcinomas) starting point. Ovarian cancer itself is not well understood. For example, many believe it doesn’t even start in the ovaries but in the fallopian tubes, at least for some. It’s hard to improve prevention or cure when doctors don’t know the basic anatomy or starting point of a disease. Currently, though ovarian cancer is the most fatal of all gynecological diseases, there's no screening test to detect it so it's rarely found before it's advanced.   

There are several types of hysterectomies as well. I’m embarrassed to say I didn’t even know which type I’d had when my STEM-loving teenage daughter asked me. She watched aYouTube video of all the possible procedures I could have had and shared them with me because she follows some biology dr. on Instagram. 

In medical terms, I had “a total hyst, bilat BSO, excision (of) pelvic tumor, bilat pelvic & aortic lymphadenectomy,” and “omentectomy.” In other words, my uterus, cervix, ovaries, fallopian tubes, omentum, a ton of lymph nodes I didn’t know were all removed as well as the cyst-turned-tumor thing and parts to biopsy.

surgery

My core is a carved out pumpkin. Instead of being scraped out with a spoon, high-tech “arms” guided by humans were inserted through my belly button, pelvis, and abdomen. The process took 4.5 hours. 

During the surgery, I was totally unconscious while in “childbirth position.” The surgical team cut, bagged, surveyed, biopsied, and rinsed my lady parts, and then some, and “delivered” them through my belly button and/or what’s referred to as the “vaginal exit.” 

The “I’m just grateful to be alive” adrenalin is wearing off, though I remain grateful I didn’t die during surgery. 

Only days after I was released — when I returned to the hospital with pelvic edema (swelling), hematoma (bruising), obturator nerve-related complications from the surgery process (it got “heat” on the right side), as well as the awkward and prolonged positioning (causing compressed nerves on the left) — that I asked or got told what type of hysterectomy I had.

I then asked for the surgeon’s notes. 

I’ve now looked up words, descriptions, procedures, and even images. I’m overwhelmed with all the information, interventions, and implications. 

It’s hard to keep up with, make sense of, or recover from what’s already happened while trying to plan what’s next. I’m still struggling for footing and balance, metaphorically as well as literally. 

As it feels more real, it’s harder to take all the phone calls I get, to answer emails or texts. 

I’m not ready to plot the next steps or stages. I want to halt time, slow down, stay right here. I don’t want to be bogged down with the physical, emotional, practical, and financial considerations of being ill while also hoping to be able to fully function as a mother, friend, writer, woman, sister, daughter, partner, employee, and person. 

But that’s not up to me. 

I don’t get to pick the time, the challenge, or cure any more than anyone else does with this diagnosis. Cancer, surgery, and chemotherapy weren’t in my life, schedule or in my calendar even a month ago. 

They are now. 

Cissy's note 11/22/19: This was written after surgery and before chemotherapy started. I've just finished round four of chemo (given every 3 weeks) and am responding well to the treatment. I'm working very part-time for now but looking forward to 2020. I'll post more about this process, over time, including trying to find trauma-informed oncologists and research about the connection between ACEs and cancer, childhood sexual abuse and gynecological cancer, etc.

When I believed what I had was "just" a grapefruit-sized cyst, I pictured all 8 of my ACEs in it so that they could be removed from my body, too. Loved through cancerMy co-worker, @Carey S. Sipp (ACEs Connection Staff) suggested  I was having an "ACE-ectomy." I LOVE that word. When I found out the cyst was cancer, I've continued to think of it as clumped up and old ACEs residue. 

When I do guided imagery, I imagine the ACEs impact, along with the cancer cells being eradicated and healed by my immune system. When my tumor markers go down, I imagine it's the relief of carrying less trauma in each cell. Who knows, I may rebound  from cancer feeling healthier than ever thanks to the ACE-ectomy! Before I lost my hair, my friend Heidi planned a photoshoot and brought blank canvases to write on. As well as some angry F-cancer signs, I wrote my intention to be healed in all ways by 2020. It's possible. 

It's odd to see a photo of myself with hair as that's now gone. @Jane Stevens (ACEs Connection staff) said I could be her buzzcut buddy. While I am quite sure no one rocks this look as well as she does, her example inspires. Losing my hair was not as hard as I'd feared it would be and I'm not sure that would have been the case if she'd not led the way and wrote about it so beautifully here. We need to have real-life examples of those who have walked in our shoes. At least for me, no matter what I'm surviving, little else offers more comfort.

Ella

I know this post is heavy but I must say I have had so much support. I have never felt more loved in all my life. I'll share about all of that as well. It's been more healing than grueling, overall.

Plus, when I'm cold, my dog seems to know and warms my head and heart. 

I'm better able to savor moments. When asked how I am, my new mantra is this: "In this moment... I am (fill in the blank)," and it astounds me how often I can honestly say, "good, great or o.k."

As so many have reminded me, and now I truly get in my gut, this moment is all any of us have and are guaranteed. 

Attachments

Photos (6)

Add Comment

Comments (18)

Newest · Oldest · Popular

O.k., it took me a while to really read and absorb and take in the comments. The day after Thanksgiving is the perfect day to say THANK YOU!

Thank you @Lisa Frederiksen @Donna Jenson @James Encinas @Anna Runkle @Diane Petrella @Cathy Grano @Robin M Cogan @Teri Wellbrock @Carey S. Sipp (ACEs Connection Staff) @Dana Brown (ACEs Connection staff) @Elizabeth Prewitt, ACEs Connection Staff and those who reached out on email.

Thanks for the love, witnessing, support, and all the offers to help! You already have helped so much and I appreciate it!! The only thing "good" about having lots of ACEs and having done lots of work, is I do feel like I have so many tools to deal with the anxiety (guided imagery, yoga, friends, writing, walks, researching, finding stories by survivors) that all help so much. And I know I'm not alone and truly savor that and the care. It means so much.

Thank you! Thank you! Thank you!

I'm grateful!!!

Warmly, Cissy 

beth o'malley posted:

write Cissy write. write while you levitate. write and teach us all about grace, how to laugh, and how not to grovel before the traditional oncology doctors. Write so we can learn how to surf above that pit of fear and shine in the sun. All the sisters need your words. May Round 4 of chemo be your cure.

Thank you @beth o'malley for your love, support, and friendship!!! Love, Cis

write Cissy write. write while you levitate. write and teach us all about grace, how to laugh, and how not to grovel before the traditional oncology doctors. Write so we can learn how to surf above that pit of fear and shine in the sun. All the sisters need your words. May Round 4 of chemo be your cure.

Dearest Cissy:
Your prolific writing reaches into the heart and soul of the readers. Thank you, Cissy, for your courage, authenticity, vulnerability and sharing of your journey. Thank you for educating us with the medical language alignment with our understanding. Thank you for uplifting us with your insight and wisdom on life,"I'm better able to savor moments. When asked how I am, my new mantra is this: "In this moment... I am (fill in the blank)," and it astounds me how often I can honestly say, "good, great or o.k."

As so many have reminded me, and now I truly get in my gut, this moment is all any of us have and are guaranteed. "

You are profoundly loved by the masses, Cissy. So many prayers of healing love and light are surrounding you always ~ and in all ways. So many healing thoughts are shared with the universe wrapping around you. So much love is permeating and surrounding every cell in your Being. 

We all learn so much from you, Cissy. Bless you for sharing your heart with us. We hold you close in our hearts.

I love you dearly, Cissy White. Thank you for being in my life. 

Dear, dear Cissy... you are incredible. Thank you for sharing your journey and your immense courage, strength, and hope. Your beautiful spirit shines through in every picture and your words, your writing, the rhythm of this piece - SO POWERFUL! As Carey wrote, I’m holding it that you have gotten your ACEs-ectomy.  Sending hugs and love, Lisa

 

 

Thank you for these words my friend, "I'm better able to savor moments. When asked how I am, my new mantra is this: "In this moment... I am (fill in the blank)," and it astounds me how often I can honestly say, "good, great or o.k."

Thank you for your courage and for sharing yourself in such a vulnerable way.

I am enhanced and a better person through having you in my life.

Blessings

You are my super-hero. I am keeping you in my heart for a constant stream of long-distance healing. My endless support, friendship, and profound respect for a vibrant and important voice in survivorship. 

Donna Jenson posted:

Dear, dear Cissy,

Thank you so very much for this gift - this telling of your story, sharing of your journey. I always believed you were an Amazon Life & Love Warrior - this only confirms that. And your post was not heavy, for me, it was a joy to see your pictures, read your reflections, be once again inspired by your courage and grace. 

Heal On,

Donna

Thanks Donna, and also for your gentle nudges to put words to the journey! It makes me feel most alive when writing. I appreciate your love and example and hope your free-writing classes are going well. I'll be back to them! Cis

Carey S. Sipp (ACEs Connection Staff) posted:

You are so loved. Thanks for the update and the opportunity to learn more. I am thrilled to know what you have in the pipeline for writing, especially the ACEs and cancer connection.  


Hugs to you and all who love you and are nearby. From afar, the number of people who love you, are praying for you, are sending you positive energy, love, and light? We are legion. I am surprised, with all the love coming your way from all corners of the earth, that you are not glowing and levitating.

Truth is, too many people I love who have or had high ACE scores are sick or have passed away in their 40s, 50s, 60s. It saddens and angers me and then fuels the love of our work. It makes me want to see (with permission of course) ACEs scores in obits so more people will start connecting the danged dots. 

You are loved and I don’t know of anyone who has a more positive and willing-to-learn-and-try-anything-reasonable outlook. 


All the best, Beloved.  Lo, that we could get ACEs-ectomies.

I’m holding it that you have. 

Love and more love, C. 

I love you and thank you, Carey!

I am glowing and levitating (at times) and so appreciate and FEEL all the love (even when I can't always respond). ACE-ectomy is a beautiful concept and, like you, this diagnosis only fuels my passion for improved health and safety in our skin and systems for all. Cis

You are so loved. Thanks for the update and the opportunity to learn more. I am thrilled to know what you have in the pipeline for writing, especially the ACEs and cancer connection.  


Hugs to you and all who love you and are nearby. From afar, the number of people who love you, are praying for you, are sending you positive energy, love, and light? We are legion. I am surprised, with all the love coming your way from all corners of the earth, that you are not glowing and levitating.

Truth is, too many people I love who have or had high ACE scores are sick or have passed away in their 40s, 50s, 60s. It saddens and angers me and then fuels the love of our work. It makes me want to see (with permission of course) ACEs scores in obits so more people will start connecting the danged dots. 

You are loved and I don’t know of anyone who has a more positive and willing-to-learn-and-try-anything-reasonable outlook. 


All the best, Beloved.  Lo, that we could get ACEs-ectomies.

I’m holding it that you have. 

Love and more love, C. 

Dear, dear Cissy,

Thank you so very much for this gift - this telling of your story, sharing of your journey. I always believed you were an Amazon Life & Love Warrior - this only confirms that. And your post was not heavy, for me, it was a joy to see your pictures, read your reflections, be once again inspired by your courage and grace. 

Heal On,

Donna

Post
×
×
×
×