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Site created on September 18, 2018
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For those of you who know Stephanie, you know that she seldom complained about feeling unwell and never took time off of work for sick days. What you didn’t know was that for the last year, Stephanie had been struggling with bothersome digestive issues. In addition to the fact that she had no insurance, the problems she was having were of a rather embarrassing nature, making her reluctant to seek treatment but soon her symptoms progressed to a point where there was no choice but to seek medical attention.
In March of this year, our dear friend was first seen at Sarasota Memorial Hospital for ongoing rectal bleeding and significant pain in the pelvic and tailbone regions. At that point, she got what she thought was good news, but actually turned out to be a misdiagnosis that delayed her treatment for the real disease that was progressing rapidly in her body.
By the beginning of April, Stephanie had begun to rapidly lose weight and she was no longer able to sit or stand for any length of time without excruciating pain. She was forced to quit her job because she was unable to sit at a desk to perform her duties.
Stephanie had no medical insurance so finding a doctor who would see her was a challenge. The county health department was the only resource that would accept her as a patient and so that is where her medical journey began.
When she was first seen, the nurse practitioner at the county health department once again misdiagnosed the problem, but thankfully also followed up with a multitude of blood tests and follow up appointments with specialists. By May 23rd, Stephanie had been seen by a Gastroenterologist who determined that a colonoscopy was urgently needed. The colonoscopy produced immediate results with the doctor identifying a mass the size of a tennis ball during the procedure. A few days later, the pathology report confirmed the diagnosis of cancer.
Stephanie was scheduled to see her Gastroenterologist on June 5th for a follow-up appointment but never ended up keeping that appointment. Instead, she ended up a resident at Sarasota Memorial Hospital for the entire month of June. In advance of her scheduled doctor visit, a small tinge of pink in her urine led to a trip to the ER that resulted in her long-term stay.
That ER visit was probably the best thing that could have happened in regard to Stephanie receiving immediate treatment for the cancer that was ravaging her body. It was immediately determined that Stephanie was severely anemic and dehydrated. She was given blood transfusions and admitted to the hospital while multiple scans were ordered. Within the first 24 hours, a PowerPump port was implanted because her veins kept collapsing at each IV site.
A veritable hoard of doctors began to see Stephanie in the hospital and it was quickly determined that her cancer was Stage III, borderline Stage IV. She had one massive tumor and evidence of cancer in her inguinal lymph nodes, as well. She was started on an intense treatment regimen of chemotherapy and daily radiation sessions. At the end of June, Stephanie was released from the hospital to finish the last few weeks of her treatment from home. By this time, family and friends would be stunned by how changed in appearance she was.
Once a vibrant and curvy lady who approached every task with excitement, she had become a mere shell of who she once was. Stephanie had lost almost 60 lbs., was pale and weak, and unable to get around without the use of a wheelchair. The only thing that remained unchanged by the disease was her zest for life and her sense of humor. In spite of feeling so physically depleted, Stephanie still met each day with enthusiasm and plowed through each treatment with determination.
After completing the chemo and radiation, Stephanie got a short break during which she was supposed to recover and gain strength in preparation for surgery to remove what was left of the tumor. Instead of gaining strength during that time, Stephanie faced infection after infection and struggled against significant pain daily. The tumor had compressed the nerves in her spine causing nerve damage that caused shooting nerve pain down both legs and throughout her tailbone area. It had also put significant pressure on internal structures in her pelvic region leading to agonizing pain there as well. In spite of the fact that the chemo and radiation did succeed in shrinking the tumor, the damage was already done and the pain didn’t go away.
By August 9th, Stephanie was scheduled for an extreme surgery that would save her life but also leave her changed forever from the woman we all know and love.
On August 22nd, Stephanie underwent a major procedure called an Abdominoperineal Resection with a partial posterior vaginectomy, a lower bowel resection and a permanent colostomy placement with her outstanding surgical team of Dr. Briceno and Dr. Meredith of First Physicians Group at the helm. In laymen’s terms that translates to this: they cut out her entire rectum so that they could be sure that all of the tumor was removed, they sewed her bottom shut then they removed a significant portion of her vagina and the last section of her colon. She was set up with a colostomy bag where her stool will exit her body for the rest of her life. This gigantic surgery took a major toll on Stephanie’s already depleted body and she ended up staying in the hospital for 16 days fighting one complication after another. She was finally failed to resume working after the surgery. She will be following up with one of the areas best urologists, Dr. Kenneth Bregg, who has faith that the condition will correct itself in time.
It is now September 18th and Stephanie is finally home recovering. It took some time before she turned the corner and finally started to show improvement. The doctors say the surgery was a success but revealed that there are still pools of cancerous material that they were unable to remove. Stephanie is scheduled to have four more months of intense chemotherapy as soon as she recovers enough to withstand the treatment. They expect the remaining cancerous material to be eradicated by that chemo.
While the doctors are hopeful that they can declare Stephanie NED (No Evidence of Disease) once she has finished these last few months of chemo, they plan to be quite vigilant in their monitoring of her cancer with scans every three months. They have given her odds that the cancer has only a 30-40% chance of recurrence in the next 3 years. Or, if you ask Stephanie, she has a 60 – 70% chance of being cancer free for the next 3 years!
What does the future hold? It is unlikely that our friend will ever be quite the same as she was before this journey. She has been radically changed in an anatomical sense and will have to tailor her new life around those changes. Also, Stephanie still has chronic pain from the nerve damage initially caused by the tumor, which continues to make sitting or standing painful and difficult. She has neuropathy in her hands and feet that cause her to lose feeling, have numbness and tingling and also to have uncontrolled muscle spasms and tremors in her hands making typing and any other kind of fine motor hand skills very difficult.
Whatever the future holds, I think we all know that Stephanie will face it head on, just like she has this disease.
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