Michelle Miller-Swain | CaringBridge

Michelle Miller-Swain

First post: May 9, 2018 Latest post: May 19, 2018

Hello family and friends!  Thank you all for your concern, love and well wishes. And thank you, Caring Bridge for the opportunity to bring everything together here for everyone.   

Adenocarcinoma of the vagina is one heck of a diagnosis.   Especially after enduring some two years of urological surgeries.                                                                                                                                                                  I'll never forget the day we were at our daughters college orientation at TCC and Michelle experienced the first symptom.    Having to excuse herself in sudden pain to the women's restroom where she had a painful and very abnormal discharge.  It was the first indication that there was a serious problem with her mesh bladder sling.    Skipping an anatomical description which I cannot provide - in layman's terms, it had slipped and was causing damage to her bladder, urethra and vaginal wall.    Infections came and went and she went through a rolodex of antibiotics and procedures leading to a port placement at her left clavicle.   She underwent a hysterectomy.  While this did not address her yet undiagnosed urological symptoms it raised the next glaring flag: a biopsy result showing cervical cancer in situ.   It appears to be cleared by the hysterectomy but more frequent PAP smears are recommended.   It was a very, very long nine months of all this  from that first day until we finally got the cystoscopy she needed.  The scope couldn't even pass all the way through the urethra because of the intruding mesh and the trauma it had caused.   I shudder to think of all the times she was catheterized through that including a regimen of medication that had to be administered through a straight catheter.   Her local surgeon did what he could to stem the tide but then referred her to Shands in Gainesville.   The first surgeries are to remove the mesh - it takes two and about 95 percent of the mesh is removed.  Then came the surgeries of trying to rebuild what is left of Michelle's urinary system.    Repairs to the urethra never really take - there just isn't enough real estate to restore original function.   So then it's on to the Indiana pouch.   Take the urethra completely out, attach the bladder to the colon and add a stoma on the stomach that can be easily straight catheterized.   Only problem was that where the urethra had been removed and the bladder sealed, didn't take.  At this point it we were well into double digits on the number of surgeries.  Time for the nuclear option.  Remove the bladder, put in conduits that drain the kidneys directly into a urostomy bag at her stoma site.  It goes well and we cautiously permit ourselves to believe that this may actually be it and she may be able to get back the life she wants.   We begin to adjust to "ostomy" life and overall feel successful.  Along the way Michelle still experiences what she describes as a painful vaginal tearing sensation.  This has been a common denominator for quite some time.  We all assumed it was somehow connected to her ill fated bladder.  The pain is intense and difficult to suppress.  One more surgery to take a look and see what is up?  No problem, we're pros now.  There is a necrotic spot on her vaginal wall and scar tissue is irritated and the surgeons shore it up.  The only kind of cancer that can be there is statistically unlikely.  Our optimism is clouded.   Michelle's symptoms return in full and two days later the surgeon calls us with the biopsy report.  Adenocarcinoma of the vagina.  
     It's serious.   Serious enough that palliative care only was an option.   In the face of less than favorable odds she chooses to fight!   We have begun a curative approach of six weeks of radiation therapy and chemotherapy at the end of which we will re evaluate.  In a best case scenario surgery may be possible to remove the rest, otherwise go to the next level of chemo and radiation .  A daunting prospect but Michelle is tenacious.  I always say she may have inherited her mother's frailties but also got her father's mountain hardiness.
     This synopsis is brief and doesn't come near the depth of everything Michelle has endured in the recent past.   She is an awesome spirit, beautiful partner and wonderful friend.
We are learning to use the Caring Bridge site and will attempt to keep everyone updated through journal entries and post some pictures along the way.  Thank you for being with us during this time.