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Ruth Savard

Patients & Survivors Stage IV Rectal Cancer
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Ruth's Story

I work full time as a firefighter/EMT for the City of Madison. I love everything about my job! To be safe and successful, I need to stay in relatively good shape. We work out at the station all the time. About six months before my diagnosis, I started noticing that what used to feel like an easy workout now required way more energy. I would hop on the treadmill, but could only make it about a mile before I felt wiped out. After a 24-hour shift, I would often have to go home and take a nap, even if we had a fairly quiet night. The increased fatigue was also paired with worsening digestive issues. I had been told numerous times in the past that I should try cutting out gluten or dairy to correct these issues, but it never really helped. 

I had gotten used to living with daily abdominal pain, alternating bouts of constipation and diarrhea, and eventually passing blood in my stool. I began gaining weight and just overall felt like the symptoms were getting out of control, so I reached out to my primary doctor. She did a physical exam and ran a whole panel of labs. She also conducted a fecal occult test, which came back positive for blood in my stool. She suggested I go in for a colonoscopy

On May 1, 2019, my mom drove me to the hospital for my colonoscopy, and while we sat in the waiting area, she asked me if I was afraid of what they would find. At this time, I wasn't the least bit fearful. In the age of the internet, I had Google searched my symptoms so many times, and I was convinced that since I was gaining weight instead of losing it that it couldn't possibly be cancer. Besides, what 40-year-old female gets colorectal cancer? Wasn't that something for old men? 

When I woke up from the procedure, I was still a bit groggy from the meds, but I recall the doctor saying that they found several polyps that they removed, and that they also found a large mass that they were unsure of and were unable to remove due to its size. They had biopsied the mass and told me they would contact me in a couple of weeks when they got the pathology results. Two days later, I was driving downtown to a retirement party for a co-worker at the fire department when my phone rang. It was the doctor who had performed my colonoscopy calling to tell me that the mass was in fact cancerous. He asked if I had any questions, of course nothing came to mind in the moment. I proceeded to park my car and walked across the street to the retirement party. I only stayed for a little while. I was in a complete daze. I barely remember any of the conversations that took place that afternoon. I just remember feeling like I had this huge secret that I wanted to scream out loud, but I hadn't even had a chance to tell my husband, my children, my parents, or my siblings. 

Things moved quickly after that phone call. I worked the next day with a lieutenant that had gone through cancer several years prior. I figured if anyone knew what I was going through, it would be him. We talked, and he helped me get all the FMLA paperwork started, as well as set me up with a nurse case manager that had helped him when he was going through treatment. She was a complete angel! She got all of my scans that were scheduled for June moved up to the very next week. She also hand-picked the best medical oncologist (who was diagnosed with rectal cancer at age 31) and an amazing colorectal surgeon. I was diagnosed with stage IIIb rectal adenocarcinoma. 

Exactly two weeks after my diagnosis, on May 17, I had my port placed and received my first of eight rounds of FOLFOX chemotherapy. After intravenous chemotherapy came 28 rounds of external beam broad pelvic radiation with concurrent capecitabine (oral chemotherapy). I had a short break, and then in early December I underwent a Low Anterior Resection to remove the remaining cancer in my rectum and had a temporary diverting loop ileostomy so the surgical site could better heal following radiation. It was a trying hospital stay. I suffered from high output, which was treated with lots of fiber and Imodium tablets. A bit too much, too fast though, because it caused an ileus. Lucky me, I wound up with an NG tube to drain the contents of my stomach. I don't recommend getting one...ever! 

Three months later, in March, I had my ileostomy takedown surgery. I anxiously waited out the six weeks of restriction following surgery and returned to duty as soon as I possibly could. With all the complications of the pandemic, my follow-up appointments were pushed back until May. I had repeat scans and lab work done and went in to see my oncologist who was thrilled with everything he saw. He told me he was confident that they had gotten everything and that the cancer was gone. He suggested an 80% chance that I was cured. 

During that appointment, I raised a few concerns that I had regarding chronic tailbone pain, what I believed to be urinary incontinence, and the fact that my CEA numbers, which were never high even when I was first diagnosed, were back up when they had been non-detectable following surgery. He assured me that everything looked good, that my CEA was still in a safe range, and that my symptoms were likely residual from the radiation. 

Six weeks later I experienced heavy vaginal bleeding and passed a large mass of necrotic-looking tissue. I contacted my primary doctor who sent me in for a pelvic ultrasound. The ultrasound showed a large mass on my cervix. On June 28, I left our family camping trip to head back to Madison to meet with a gynecologist. An extensive pelvic exam was performed and the doctor was very concerned with what she saw. She took several biopsies of the tissue and sent them off to pathology. The following week I got a call from her stating that the results came back positive for cancer. The tumor on my cervix was caused by the same adenocarcinoma that had been found in my rectum. I was immediately heartbroken. This now meant that my rectal cancer was stage IV, and I feel like you are always hearing about people not surviving stage IV cancer. 

In the weeks to follow I underwent CT, MRI, and PET scans to get a better idea of the extent of the cancer on the cervix, and where else in my body cancer might be. At a Monday appointment with my medical oncologist, he said the scans looked good, and that the cancer was confined to the cervix. He was confident that the gynecology oncology team should be able to remove it with a simple surgery. I left the appointment so relieved. I've already carried and delivered four healthy children. I no longer needed my cervix or my uterus. A hysterectomy didn't seem like a big price to pay. That night I told my children, family, and friends that the news was good and that a simple surgery should take care of things. 

The next day I was scheduled to work a 24-hour shift. I got a short trade at work so I could attend an appointment with the gynecology oncologist. I didn't anticipate needing more than an hour or two for the appointment. I figured he would look at the scans and talk to me about having a hysterectomy. Instead, he conducted an extremely painful pelvic exam, followed by a repeat of the pelvic exam conducted by his colleague from radiology. He stepped out so I could get dressed, and what came next I could never be prepared for. 

When he returned to the room he drew a bunch of pictures, showing me where exactly the cancer was located. Then, he told me there was only one surgical option he could offer, and it came with a 10%–20% chance that the cancer wouldn't return. It was called a total pelvic exenteration. It would require complete removal of all organs in the pelvis. They would remove my bladder and possibly my urethra, my uterus, ovaries, fallopian tubes, cervix and vagina, another portion of my colon, and the remainder of my rectum and anus. I stared blankly at the doctor in complete disbelief. Tears just rolled down my face. It was a complete 180 from the day before. I couldn't understand how it was the year 2020 and the best option was something so barbaric. 

I left the office convinced that I would never go through with such a crazy, life-altering surgery for a sliver of hope or a chance of survival. I had decided I would just do whatever else they could offer me to prolong my life for as long as possible. I was told that chemotherapy would only be "maintenance" and would provide me with a year at most, and I would likely still lose the function of my bowels and bladder at some point, as well as having to manage a significant amount of pain. I couldn't believe that there wasn't some sort of clinical trial or cutting-edge surgery out there that would be less invasive or could offer me better odds. 

The gynecology oncologist put me in touch with a wonderful lady who had also undergone a total pelvic exenteration. I spoke with her about her experience with this surgery. She worked as a nurse in a dialysis clinic before the surgery. Afterward she had to go to a rehabilitation center to learn how to walk again as they had removed muscle and tissue from her leg for the reconstruction. She was unable to return to her previous job and had to find a new one. I was devastated at the thought of giving up a career that means so much to me. I decided to go to Mayo Clinic for a second opinion. Unfortunately, it was a huge letdown when their plan was nearly identical. It wasn't a complete loss; however, as I did learn about some alternative reconstructive options. 

After much deliberation, research, and prayer, I decided I needed to do whatever I could to be around as long as possible to watch my kids grow up. I had to resign myself to the fact that there was a good chance I would never return to working as a firefighter. At 5am on the morning of August 17, 2020, I arrived at the hospital for my total pelvic exenteration, and was greeted by 150 of my firefighting co-workers, numerous engine and ladder trucks, and ambulances. They lined both sides of the walkway outside the hospital entrance. They were holding signs they had made, and were chanting my name and cheering for me. It was incredibly moving. I still get emotional every time I think about it. Their support and encouragement got me to walk through the door that morning to face one of the most terrifying surgeries I could ever imagine. 

It took a room full of surgeons, and over 12 hours, for them to complete the pelvic exenteration. When I woke up from surgery it was like a strange version of Christmas morning. I asked my husband and the staff what I got? They told me I ended up with a permanent colostomy bag, complete removal and reconstruction of my vagina, and an Indiana pouch (a continent urinary diversion with a stoma on my abdomen that gets catheterized every couple of hours). 

I spent a month in the hospital recovering. I returned home determined to heal and to recondition myself for return to active duty. I was told that recovery can take 6-12 months, and that I might not be able to get back to being a firefighter, but I was determined to try. I was able to get myself into a Tactical Athlete training program run by two physical therapists at the sports medicine clinic. They have done a good job shadowing in police, fire, and military work. They understood medically all my body had been through — between cancer treatment and surgery, as well as the physical demands of my job. They ran me through weekly functional workouts, in full SCBA pack, lifting, pulling, pushing, and carrying. I was overwhelmed with joy when they told me they thought I would be ready to return to firefighting by January 1. 

Just 4.5 months out from surgery, I was able to return to doing what I love. I am thankful for every day more that I get to spend with my children. That was the ultimate motivation behind agreeing to go ahead with the surgery but getting back to firefighting was definitely a close second.

In the two years following my surgery, I've had several recurrences of cancer in both of my lungs. These spots have been successfully treated with SBRT (Stereotactic body radiation therapy), which is high-dose, focused radiation therapy. I continue to be closely monitored with SignateraTM testing, labs, and imaging every three months to hopefully catch any additional recurrences while they can still be treated or managed.

Ruth’s Advice 

The best gift you can give, to yourself and to others, is to get involved and to share your story. Everyone has their own journey, but you never know who is on a similar path and could benefit from hearing your story. Connecting with other advocates, patients, and survivors through organizations like Fight CRC not only brings a wealth of resources, but it also provides you with understanding, support, friendship, love, and encouragement from those who understand it better than anyone else, because they have lived it too. Don't go through this journey alone.

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