How my story begins: In 2013, I was constantly thinking I had a bladder infection and treated it with antibiotics. But I still seemed to 'leak' and I thought it was that I was almost 40 so was probably what many women complain about after giving birth.
In December 2013 my period cramps became debilitating. And in March 2014, I began experiencing shortness of breath and just didn’t feel good so I came home from work early because I just felt bad. That evening I began hallucinating and my son reached out to my sister-in-law because my husband was at my 10 year olds chorus recital. I was taken to the ER where they said I was in kidney failure. They attempted several times to catheterize me but it came right back out. The hospital determined I need to go to a larger trauma center. I suffered a watershed stroke in the ambulance. I do not remember much of two weeks following. I do remember being at the big hospital and the doctor saying, “I’m sorry but you have cancer and it’s very advanced”. I paused and finally asked, “Am I going to die?” (I watched my grandmother die of cervical cancer at 14). The doctor said, “I don’t know but we will do our best."
Life before my diagnosis: My life was completely normal: a wife and mother to three beautiful kids that were still young. I had just finished my degree in medical coding and billing and finally got a job at a doctor's office with great coworkers.
How I felt after diagnosis: At first I was in disbelief but do to the stroke and kidney failure I was really out of it for two weeks. My husband put together a great team of doctors to oversee my care. When I finally became 'with it', I was confused and hurting. I had nephrostomy tubes in my back. My husband came up to the hospital because I completely flipped out not understanding what was going on. He reminded me of my diagnosis and then explained everything. I remember thinking okay this is going to be how I die.
Telling my family and friends: My family was at the hospital so I didn’t have to tell anyone. Thank God because I was disappointed and I am not sure I would have been able to tell my kids. That was all done for me. I remember a moment in ICU when my Dad was there and the look of devastation in his eyes broke my heart.
My treatment: While undergoing physical, speech and occupational therapy to deal with the stroke issues. My cancer was determined to be inoperable. My doctor said if I responded well to the treatment that surgery could become a possibility. Everyday I was taken for external radiation treatments. Did 30 rounds of that. During the radiation I completed 5 rounds of chemo. I received Cisplatin. After I completed the radiation and chemo, I then had to do 5 rounds of brachytherapy.
That is what I referenced as the Circus period. Doctors would place a contraption in my vagina and do a CT scan to ensure placement. Then came the physicist and medical students to observe the circus tent. It was mortifying and I would joke about charging admission when I reality I just wanted to hide in a corner. After I completed all the treatments, it was determined the tumor shrank enough to make surgery possible.
The doctor explained my bladder would need to be removed and there were a couple options for cystectomy. I met with surgeons and opted to have a piece of my small intestine made into an artificial bladder that would drain out of a stoma and into a urostomy bag.
July 5, 2014 I underwent a 6 hour surgery. I was cut from just below my stomach to my pubic bone. I had a total hysterectomy and cystectomy surgery. Recovery was rough but made it through and after pathology they determined they got it all. At that point I thought the worst was behind me but I was wrong.
How I felt after treatment: I felt great for the first 6 weeks and I went for my surgical follow up. On September 15 dr said everything looked great and I was healing perfectly. That evening I started to have discharge that was almost like peeing myself again. Contacted the dr who told me yo monitor to be sure it wasn’t an infection. November 24, I started to have bowel movement’ coming out of my vagina. I was diagnosed with a rectovaginal fistula. Surgeon performed a colostomy the day after Thanksgiving. Although they told me it would be ‘temporary’ it was not.
In July 2015, I developed a lump on my incision site. I went to the doctor, who believed it was a boil and put me on antibiotics. That evening it popped and a urine came out. I rushed to the ER in a panic like now what! I had an intestinal fistula and had to actually wear a colostomy bag on that site for three months. My body was working so hard to heal the radiation I lost massive weight and when this happened I was down to 89 pounds. They had to bulk my weight up before they could do the surgery. I lost 8 inches of damaged intestines.
This happened a second time in 2018. During that surgery I also opted to try the flap to repair my fistula after 30 rounds of the hyperbaric chamber failed to heal it. They folded down the abdominal muscle and placed it between the rectum and vagina with the thought that the new vasculated tissue would promote healing. It sadly didn’t work either.
What was most difficult for me: The hardest thing was the urostomy and colostomy. I had to learn to function in the new normal. It was one thing after another and I was receiving disability. The accepting I was never going to work again was really hard. It sent me into a deep depression. With the rectovaginal fistula, it made intimacy impossible and I feared my marriage would suffer. Thankfully my husband was just happy I was alive.
What I did to help myself: I enter therapy to help me begin to deal with my feelings. It was much easier to be honest about what I was going through with a stranger. I went on medication to help with my depression and anxiety. Going out in public was hard as I was always afraid people could see the bags or worse hear my colostomy. To me that was terrifying so I began locking myself away from people who didn’t know my fight.
My life after cancer: It has been one thing after another. The radiation damaged my ureters. I had stents in place but the scar tissue in October 2021 adhered to my left iliac artery and left ureter together and caused me to hemorrhage several times before they were able to figure out why. Thankfully when it happened I was already in the hospital for a severe electrolyte imbalance.
The chemo damaged the little tubulars in my kidneys, making it extremely difficult to maintain normal potassium, magnesium and calcium levels. I now have permanent nephrostomy tubes that I hate. They keep me alive so can’t really complain. They have to be changed every two months and pretty much leave me with a constant kidney infection. We only treat if symptomatic with fever or severe back pain.
Where I am today: Today I have thankfully been good for over a year. Last hospitalization was in October 2021. I see my doctor regularly to regulate my electrolytes. I stay very in top of my health because I have learned if ignored, a minor thing has the potential to turn into a life threatening hospitalization.
What I want other women to know: Your life is not over because of cervical cancer. I was stage 3B and I’m here almost 10 years later. There have been hiccups over the last nine years absolutely. I just adjust to whatever the new ‘new normal’ is as they occur.
How I will try to help others: I feel my story could help other Cervivors as they meet obstacles. I am now a professional patient and able to discuss my issues openly. Would love to be a role model to others struggling with setbacks. Life does go on after cancer, you just need to roll with your new normals no matter how many are thrown at you.
Any additional information you'd like to share: Many cervical cancers are caused by HPV. I remember the embarrassment of that diagnosis. There is a vaccine now a days that wasn't available when I was young. I made a mistake as a teenager. Doesn’t make me dirty or ashamed. It made me human. We need to really lift the stigma that comes with HPV and know it could happen to anyone.