From NED to Metastasis: Colostomy Reversal Story

Hello Readers.

On Monday September 16, 2024, I went under the knife to reverse the temporary colostomy I had placed December 23. Just months ago, I received an all clear with no evidence of disease from both pancreatic and colon cancers. Still, what my surgeon found tells an absolutely different story. To her surprise, multiple nodules were found in my abdominal wall (peritoneum). She took multiple samples for pathology, and then went about improving my quality of life by reversing the colostomy.

I am SO thankful for my body digesting and eliminating as it was designed to do. Temporary Tina (TT) the stoma is in the history books.

I was in a post-operative drug addled haze when my surgeon relayed the good and bad news. I didn’t understand what she meant until rereading the first pathology and speaking to Tiffany (who spoke to my surgeon alongside my husband). No one, including my surgeon, was prepared to find more cancer. It was a full helping of shock and awe.

Again, for clarity, my March 2024 CT, April 2024 colonoscopy, and July 2024 labs were all normal. All indicators pointed to a clean bill of health with no evidence of disease (NED).

To go from no evidence of disease to metastatic cancer patient is a surrealistic ride. I want off it right now.

Can you imagine the thoughts in my head? Mainstream medicine, with all its promises has both helped, harmed, and failed me. I have endured toxic and poisonous chemotherapy, not once, but twice. The daily reminders of neuropathy and traumatic side effects hang heavily within and without. Through multiple invasive GI surgeries that healed me by violence has left body deeply scarred, traumatized, and internally renovated. I have done everything asked of me and more.

How in the flying monkeys is this real?!

How were my recent July labs pristine with this number of murderous nodules trying to kill me?

So, what’s next?

First, the second pathology report defining which cancer metastasized is still in process. Though the general expert thoughts are the adenocarcinoma is from the colon cancer. Until the pathology report results, there is no knowing which cancer is the culprit. Due to a better prognosis, I am hoping against hope it is the colon cancer.

What bizarre planet do I exist on where I am wishing upon a specific cancer star?

Second, I met with an integrative oncology physician today. It was a fruitful appointment that covered several aspects of care including nutrition, supplements, non-toxic treatments, exercise, and stress management. I will keep relationship with my regular oncologist and pursue clinically appropriate treatment with her as well. Integrative medicine is using many different tools in a basket.

Third, I’m going to tap deeply into my communities for resources, referrals, and support so I can fight this.

Even with all of that is to come, I am not scared. I am disappointed. I am tired of this continued fight. And I am at peace.

I believe with my whole being I have time to fight this well. My healthy and strong body has more to give. My heart has so much more love to offer and get. My hands have more healing to give. My sarcasm has more jokes and laughter to create.

Don’t you dare count me out yet. I am definitely hard to kill, and this feels like a dare. I rarely lose a dare.

Beauty and life stay within this scarred and ravaged body.

Desirre

1 October 2024

Desirre Andrews, RN, BSN, CPM, RM, Brain Squirrel Wrangler

Follow My Video Journey on TikTok

Image by Raw Pixel

All Rights Reserved 2024

Losses and Gains

Cancer is a thief.

Cancer is a grifter.

Cancer is a psychological weapon.

Cancer creates a sacrificial lamb.

Cancer is a MOFO of the highest order.

The Straight Dope

I was just coming to grips with all I had been through fighting round one of adenocarcinoma. The depth of illness, exhaustion, pain, anguish, and trauma is immeasurable. Terrifying my husband and children broke my heart every single day.

As of June there was no evidence of disease. The treatment had been successful. Statistically I had a 60% chance of being alive in 5 years. Not great, but better than it could have been. I was finally coming to grips with living under the threat of the grim reaper.

Fast forward to mid-December and abdominal pain hit and wouldn’t resolve. After the third trip to the ED and doing everything to clear the diagnosed severe constipation, I was told I had a complete bowel obstruction caused by a cancerous growth. I needed emergency surgery and a colostomy.

It took a week and a half for pathology to reveal the type of cancer. There are no suitable English words to indicate my feelings on the matter.

And now I face another showdown. In many ways I know it’s going to be so much worse than before. The first time it remained static within my pancreas before it was cut out along with several healthy organs prophylactically. This time it’s in my lymph system. Absolutely fecking horrifying. METASTATIC adenocarcinoma. Oh, there aren’t enough expletives to cover it.

Losses and Gains

It’s difficult to enumerate the number of losses I’ve experienced since being diagnosed with cancer. And yet I will give it a try dear reader.

  • Time - stolen, shifted, corrupted, occupied, shrunken, and ticking away like a countdown clock with a surprise ending.
  • Body snatcher – body parts removed prophylactically to attempt to outwit the cancer, layers of scars added to my abdomen, poison running through my veins to slow or kill the beast, an angry liver left in the wake of the onslaught, stealing my beautiful hair, adding years to my external surfaces, exceptional fatigue, feeling ill, spoiling my taste buds and appetite, and the temporary disruption of GI function requiring a colostomy bag until chemotherapy ends.
  • Physical intimacy – removing the desire for sex and fearing physical intimacy from the numerous surgical and chemical side effects I’m left with.
  • Certainty – the knowing I would be here for my children and grandchildren (unlike my mother) until one of them had to care for me, living a long life like my grandmothers, aunts, and uncles, and believing being a fit and healthy person would keep me safe from cancer’s clutches and other bodily illnesses.
  • Goals – I’ve been called to be a Family Nurse Practitioner for years. a couple of weeks ago I withdrew from the grad school program I was in. Why? My time is exponentially more valuable than it was before, and prioritizing NOW was necessary. If I beat this, I can revisit the process. I’m heavily grieving this loss.
  • Peace of Mind – the disconcerting whisper constantly reminding me how close to the veil between the mortal world and the afterlife I am. Even in laughter, the sadness remains. It’s the elephant in the room wherever I go.

The gains are much nicer to think upon than the losses. Truthfully, they are also more difficult to remain focused on because the losses are so noisy and demanding of attention.

  • Abiding friendship and support – I clearly know who my ride or die people are. My community shows up without fail in every way imaginable. You know who you are, and I love each of you to the bottom of the ocean and to the ends of the universe. I couldn’t do this work without you in my life whether near or far. I know without a doubt someone will be there to carry me if I cannot walk on my own. I’m accepted faults, quirks, and weirdness. I’m so thankful to know who my people are.
  • Family – The closeness within my family structure is BEAUTIFUL. My husband, children, siblings, aunties, cousins, nieces…the list goes on. I know without a shadow of a doubt I’m valued, loved, cared for, and supported. I. Am. Wanted.
  • Love – immeasurable, overflowing love from the corners of the earth. It keeps growing and expanding. It’s the invisible staff I hold myself up with, the cloak I cover myself with, and the air I breathe.
  • Time – each minute of my life holds a higher value than before cancer. I may not know the number of breaths I have left; however, I do know that this cancer is trying to steal as many from me as possible. Every person I spend any time on or with should know how important they are. I will never again take for granted any moment.
  • Faith – our Creator is bigger than all things. I’ve no fear of dying. I am secure in the promised afterlife. It’s the timing I’ve a problem with. Believing the calls upon my spirit matter and will come to fruition in the proper timing. I’m not a red shirt who will suffer a useless and meaningless death.
  • Trust – in myself to do the work and stay the course. Trusting in the informed choices I make. I will leave no option unturned, undone, or unsaid to get to the other side of this. Trust in my strong still healthy body to show u and FIGHT for her life.

The only risk factor for adenocarcinoma I had was being over 50 though pancreatic cancer is generally a disease of the over 70 population. Cancer is on the rise in every demographic regardless of risk factors, screening matters.

Thank you for reading. Thank you for holding space and making room for my vulnerability. I appreciate you sharing my posts in the hope someone else will feel seen and heard.

Desirre Andrews, RN, BSN, CPM, RM, Brain Squirrel Wrangler

TikTok: @des.andrews

Instagram: @desirreandrews

Photos are courtesy of Raw Pixel.

All Rights Reserved 2024

Daily Rules of Engagement for Mental Health Stability

While coming to grips with a new secondary cancer diagnosis I’m experiencing profound situational depression and sadness. Though strangely there is a slight lifting of the oppressive feelings with the pathology report indicating a return of the adenocarcinoma likely because I now know who my enemy is, the depression and sadness remain.

To keep myself in check and knowing I’m prone to isolating when I feel vulnerable and overwhelmed, I immediately instituted daily rules of engagement. I need order in the chaos so I can live and hopefully thrive. As my body heals from surgery, I’ve added additional rules to my list of three.

Rules of Engagement

Rule 1: When I get out of bed in the morning, I stay out of bed until bedtime.

Rule 2: I change out of my pajamas and get dressed.

Rule 3: I wash my face, brush my teeth, put on my usual makeup, and fix my hair.

Rule 4: Purposefully making “dates” with friends so I can remain connected to my precious community. Answering texts and phone calls from family and friends who are far away. Again to connect and limit my tendency to isolate.

Rule 5: Performing a needed task every couple of hours for at least 15 minutes so I don’t simply sit and read or zone out. This means writing down simple attainable tasks.

Rule 6: Adding in daily play and pleasurable tasks like reading, going for a walk, listening to music, or cooking.

This method works for me because I like a framework. I like tangible accountability. The order is grounding and feels safe. And yes, I’m under the care of a therapist with whom I presented my rules of engagement yesterday. She validated my method and even added to the list.

As I forge ahead in cancer treatment, I vow to be open about the good, bad, and ugly. I’m here to share in your community and to be enveloped with love and support from mine. Cancer, like other serious illnesses, is meant to be experienced in community. The support and love from community engagement are the energy boosters that make the work a little easier.

Thank you for reading. I appreciate you sharing my posts.

If you are struggling with mental health or know someone who is, here is a helpful link.

Desirre Andrews, RN, BSN, CPM, RM

TikTok: @des.andrews

Instagram: @desirreandrews