Getting Back in the Ring

The dreaded words no cancer survivor wants to hear rolled off the tongue of an ER doctor one late night before Christmas 2023. I was experiencing severe GI pain and visited the ER twice earlier in the week with the Diagnosis: Severe constipation without obstruction. However, on this fateful night, the diagnosis changed to complete bowel obstruction likely caused by a cancerous growth. Colon cancer. I shot up and bed with shock at his words. CANCER??????

However, I had no evidence of disease every three-month follow-up with my oncologist post successful Whipple surgery and completion of chemotherapy for pancreatic cancer (adenocarcinoma). I was given a clean bill of health a couple of weeks earlier. The September CT showed a normal sigmoid colon.

I was admitted to the hospital and met the surgeon who would be doing the emergency the following morning surgery to remove the mass along with as many lymph nodes as she could harvest for pathological testing. In the process, she had to create a stoma and I would require an ostomy bag for at least three months.

The hits kept coming.

The pain was excruciating.

My mind was reeling.

The surgery went well and I awoke with a very different body and a load of staples closing the large wound. 

Grave disappointment followed as I was put in a room so tiny my husband couldn’t even stay the night with me. Deep grieving and sadness descended upon me. More distress followed when the nursing staff ignored my calls for hours post-op. Thankfully some longtime friends spent some of those hours visiting with me. By the evening shift a more attentive nurse cared for me. Even so, the night was endless without my husband with me.

The next couple of days, including Christmas, were a blur. I sunk into a hazy sadness while doing my best to learn how to use the ostomy and struggling to get up and walk. My husband came twice a day to sit with me and help me in any way he could. He’s my rock.

I left for home on December 26th armed with a giant bag of various ostomy supplies and education given by an amazing wound care nurse. She, along with the NP and surgeons, were bright lights in the situation.

The first several days home were filled with pain and challenges trying to navigate the new normal. Every part of my body hurt. Nothing tasted good. Depression settled in.

I knew I needed some safety net rules for myself. Depression is something rare to me. I knew I was playing with mental health fire.

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.

The rules help me to function and look ahead. I’ve added a few more but that’s for a later post.

Finally, New Year’s Day arrived and we had our missed family Christmas dinner. It felt good to cook and prepare for the evening. It was good to have most of my family here. We opened our stockings and simply spent a few hours together.

Every day I feel stronger and more competent in managing my new digestion. That’s the good news.

Then yesterday everything changed again. The pathology results arrived. When I opened the document ADENOCARCINOMA screamed off the page. FOUR lymph nodes positive involvement. Clean margins surrounding the golf ball-sized tumor.

Though I don’t know exactly what the path will look like. I do know this means more rounds of chemotherapy. MORE of the nightmarish Folfirinox. Another port placement. More pain and suffering. All of this mere months after being declared no evidence of disease present. Mere months after completing chemotherapy. I will have more answers and a clearer direction mid-month when I see my oncologist.

Turbo cancer is a dastardly mofo. Adenocarcinoma is my sworn enemy.

As of last night, I’m getting back in the ring. I’m not going to be an easy target for this nightmare fuel.

I have grandbabies to meet. Memories to make with my family and friends. Patients to care for.

I again choose life.

I enter this fight intentionally.

The Waiting Room

Today, September 20, 2022, begins the next leg of my pancreatic cancer journey. After a repeat CT scan, intake, and lab work, I am sitting in the waiting room while my future path is being decided by the group of people on my interdisciplinary team at UCHealth Anschutz.

It’s an incredibly daunting wait. Has the cancer spread or stayed the same? Have the cancer cells in my common bile duct become tumors? Does my lab work reflect the otherwise excellent health I possess? I wouldn’t wish this wait upon a single soul. Not even a walk at a nature reserve after a late breakfast soothed my increasing agitation.

Chemotherapy. Surgery. Possible genetic mutations. Those are all heady topics beyond the insidious pancreatic cancer diagnosis. Yet, when I walked in this morning, I knew without a doubt I am one of the “lucky” ones. I am not the 80% who are slowly being internally proliferated by pancreatic cancer and find out when it is too late for them to have a decent fighting opportunity. Often death is soon upon them after learning they are ill. That is not my story and I grieve for each one who’s story that became or will become.

I know I have a fantastic DNP who worked at John Hopkins for a decade with one of the oncologists on my team before coming to Colorado. I believe that is an excellent start.

I also believe I am meant to be here, in this place, to receive the best help I can to beat this mini murderer I carry within.

What I steadfastly do not believe is that God placed this disease within me. Nor did God give me this cancer because I could handle it. As my eloquent cousin Mark says, we live in a mixed bag of a world. We do not know what is ahead of us or why some of us go through what we go through. Difficult things happen to everyone, as do beautiful things along the way in this finite earth-bound life.

I retain my choice in all this to find peace, joy, laughter, and love. And yes, there will be moments or days of sorrow, grief, and pain. I choose to live for today and tomorrow on my terms until the possibility slips away (hopefully decades in the future), and it is time for me to return from whence I came. As a believer in Christ, I am confident my inner peace and gracious attitude begin with Him.

Until there is more to report…

Pax,

Desirre

Childbirth Time Machine

Did you know time-walking is possible? I assure you it must be because I experienced it first-hand spending a day in a labor and delivery unit recently.

Why did I perceive a disturbance in the timeline?

  • Admission to the unit when in early labor.
  • Epidural placement prior to active labor.
  • Labor induction without medical reason before 39 weeks.
  • Allowing only “clears” (only broth, ice chips, popsicles, gelatin) during an induction or after epidural placement.
  • High primary and repeat cesarean rates.
  • Additional Interventions because of the above practices.

The most frustrating thing of all is that no one seemed to be bothered by how anti-evidence or anti-standard of care this all is.

I’ve attended more than 100 hospital births and many hundreds of homebirths; I’m absolutely gobsmacked by the laissez faire attitude toward the common usage of outdated practices and the absence of evidence-supported healthy practices.

Evidence shows how each of these practices increases interventions, maternal and fetal morbidity and mortality. NO WONDER THE US ranks so poorly amongst all of the developed nations of the world.

NO WONDER women exhibit high rates of fear surrounding childbirth. What women are routinely experiencing in labor and delivery units is scary, trauma-producing, and increases poorer outcomes. It doesn’t resemble or imitate physiologic spontaneous birth and how positive it can be.

The fact that most women still can have vaginal births in the hospital is a TESTIMONY of how fantastically designed women and babies are, not that the interventions and practices are beneficial to most.

Drop me a comment or email. I would love to hear about your experiences.

TO lighten the mood. Cord cutting to start the newborn exam at a homebirth.

Hello World!

Welcome! It came to my attention recently that my website had been co-opted by someone else, much to my aggravation. Now I’m back with a new site and more brain squirrel wrangling from the corners of my mind and the world as I experience it.

My posts will cover an array of topics as I am a multi-faceted human just like you.

My current status is as accelerated nursing student, coffee enthusiast, and lover of cats and the outdoors.

See you soon.

Pax.