Need Hope? Meet Jennifer Manning
Seven years ago, I could not imagine I would be writing my story as a long term thriver. Back in April of 2015, I had just said goodbye to my good friend after her battle with pancreatic cancer. Within a few days I started having discomfort in my backside. I didn’t think much of it at the time, but I mentioned it to my primary care doctor at my 3-month visit (I have Hashimoto’s and was being monitored every three months). She did a quick exam and said she did not feel anything, but I should see a gastroenterologist as she was not an expert in this area.
At first, I did not make an appointment, but the pain rapidly worsened. It got to a point where sitting was painful. I made an appointment to see my gastro. My doctor moved to Florida, and I was assigned another doctor. By the time I went to the appointment, I could not sit, only kneel down, as the pain was so intense. I explained to the doctor the pain was a deep pain, not a surface one. He pretty much dismissed me, saying, “I don’t know, maybe you had a small hemorrhoid.” He was more concerned with the fact that I had not had a colonoscopy for a few years and kept pushing for that to be scheduled. I told him I could not imagine that the millions of people with hemorrhoids have this level of pain! It did not make sense. He gave me a prescription for some suppositories and shooed me on my way. I felt dismissed and not listened to by this new doctor, and I was really disgusted.
As the pain was so intense, I did fill the prescription and tried the suppositories to see if I got any relief; as I had feared, I did not.
A few days later the pain was almost debilitating. I began hemorrhaging vaginally. I was bleeding so much that I was on the toilet for over an hour waiting for the bleeding to stop long enough so that I could go to the hospital. I had a young daughter and did not want to pull her out of bed, so I left my husband home to watch her, grabbed a towel to sit on, and drove to the hospital a mile away. As I walked into the hospital and began searching for the ER, the security guard looked at me with extreme concern and escorted me there.
The ER staff proceeded to take the standard measurements—blood pressure, blood sample, urine sample etc. Never was I examined physically. The doctor came in and said, “You have a UTI! We will give you some antibiotics and you will start to feel better in a few days.” I asked about the bleeding—this was not a little blood, this was a lot—and was told, “Yeah that can happen with a UTI.” I was discharged and sent home. This was at about 3 am.
I got home and could not sleep due to the pain. As soon as 9 am hit, I called my OBGYN, whom I have known my entire life and who is friends with my father. He told me get to his office right away. So, my husband and I headed up to his office. I was quickly put into an exam room where Dr L took a complete history and did an exam. His first words were “Did they not f%^king examine you at the hospital? There is a huge mass I can feel instantly!”
From there it was a whirlwind of tests. An ultrasound revealed an 8- 10 cm mass. I was sent for a CT scan and bloodwork. Dr. L also gave me something for pain (thank G-d) so I could get some rest. He explained to me that I would be having surgery but said we should find out what the mass was first. (I should mention that he was my mother’s doctor; he found her ovarian cancer and saved her life.)
I got a call 2 days later asking me to come right into Dr. L’s office. He had a colleague do an exam as well, then explained that the CT scan showed that the mass was not in the uterus but behind it and that they were not sure what it was. I was going to have more tests done at the hospital, so I went home and packed a bag. At the hospital I had biopsies done in two ways by two different doctors. One was transvaginal and one was done via colonoscopy. I got the news that this was a rare cancer called leiomyosarcoma. It was attached to the back of the uterus in the retroperitoneal cavity. But it was considered ULMS, not RLMS, as the primary mass was on the uterus. It was approximately 8-10 cm. Surgery was scheduled in 2 weeks so they could put a team together. I was sent home with even better pain meds.
Even before my surgery I ended up in the ER again, as I was unable to urinate. I needed a Foley catheter to be placed and had the ER doc speak with Dr L to get instructions.
Surgery day arrived. This was supposed to be a 2 hour surgery, a complete hysterectomy. My husband, dad, and aunt were at the hospital waiting for me. Well, the doctors had a few surprises when they began. First, the reason I could not urinate any longer was that the bladder was now completely encased in the tumor, which had now grown to over 18 cm. The urologist could not place the stents. The tumor was now attached to, and had invaded, the colon and vagina. 9 hours later I was out of surgery with a colostomy, hysterectomy, and vaginectomy. They did save the bladder minus a ureter. The morning after the surgery I remember one surgeon coming in and making the comment “I am sorry we waited. I never could have imagined it would grow so fast. There was almost 10cm growth in less than 2 weeks.” The mitotic rate of my tumor was >100/10, I have since learned. The best news was that they had removed the tumor encapsulated. There were ~20 tumor satellites (like tendrils coming off the tumor) ready to spread but it was removed intact with no spread detected. All nodes that were tested were clear. I was NED.
I spent a week in surgical ICU. I ended up having an NG tube put in as I was vomiting from the anesthesia and they did not want me to rip any of my internal stitches. That was a nightmare. They made 3 tries and I said, “No more!” They finally got a pediatric NG tube and had a doctor insert it. For 3 days, I had no food or drink by mouth. I wouldn’t let anyone visit. I was miserable. But finally the tube came out, and I gradually felt better as they unhooked me from each of the IV’s, monitors, and catheters.
Six weeks after the surgery I began chemo. The first round was 16 weeks of Gem/Tax, with 2 weeks on and one week off. I had every side effect imaginable: vomiting, diarrhea, fatigue, nausea, metal taste in mouth, fatigue, lost taste buds, neuropathy in hands and feet, fatigue, muscle weakness, and did I mention fatigue?
The second round was the Red Devil, with 16 weeks 2 weeks on, one off. I did not have too many side effects other than fatigue. I was so grateful that my husband was able to be with me for all but one chemo treatment. My dad came the one time my husband couldn’t, and the nurses all remembered him from when my mom was in treatment years before.
Post treatment I had CT scans and doctor visits every 3 months for the first 3 years. Then for the next two years it went to 6 month intervals. Now I am at the once a year visits and scans. I continue to be NED. I do have a small 3 mm node on my one lung, but it has remained unchanged for over 3 years now and they do not believe it is anything to worry about. My oncologist is not a sarcoma specialist (but one was consulted about my treatment) as I did not know about specialists at the time and had faith in the team my OB-GYN put together. In a way it was a blessing that I did not research things too much before the surgery and postpone it as who knows what would have happened with the spread of the tumor. Now that my oncologist has left the practice, I am switching over to Memorial Sloan Kettering for my annual follow up visits.
I went back to work 10 weeks post-surgery. I was doing client trainings through Webex (before Zoom) from the transfusion center. At first, I was remote, and about 9 months later, I was going back into NY. Work kept my mind occupied and off of thinking of the worst-case scenario.
Now 7 years later I am living my life. I have moved into my dream house and work remotely at a job I enjoy. I look forward to seeing my daughter start high school and then head to college. I can’t say I don’t worry about the LMS coming back, but I try not stress about something I cannot control. I have been on amazing vacations and enjoy time with my family and friends. I am on the board of directors for a local cancer charity helping others by delivering comfort care bags to the local cancer centers.
Throughout my treatment, as sick as I was, I always tried to stay positive and make the most of it. I had a 7-year-old kid to think of and needed to make it less scary for her. I started “fun day Fridays” where I would wear colored wigs to pick her up at school or camp. She never knew what color I would have on. I went as Rainbow Brite for Halloween. For every single chemo treatment, I alternated what color wig I would wear. The best thing happened on one of the last days when I was heading into chemo with my husband. A little old woman stopped me in the parking garage. I thought I was going to get yelled at for parking in the handicap spots (legally) but she looked at me and said “I like the rainbow wig best.” I just about cried. It was wonderful to know that my attitude and trying to make the most of the situation (if I’m going to be bald, I may as well play with wigs) made someone else going through the same thing smile. It made me feel there was a reason I was going through this.