A beautiful friend of mine that passed away from cancer once told me that we need to share our story. She believed it needed to be heard around the world. I have Ovarian Cancer: specifically, Borderline Ovarian Tumor, Low-Grade Carcinoma. I’m 47 years old, living with cancer and here is my story…
I’m 17 years old, I wake up with severe pain and swelling in my abdomen area right next to both of my hips (what I now know is my ovaries). It’s a weekend, so we rush to the ER. They tell me it’s just an infection, give me a shot and tell me to follow up with my gynecologist the following week. I follow up with my gynecologist the next week. She puts me on birth control, says I probably had cysts and this will control it.
Five years later, I am now 22 years old, I have reoccurring lower back pain. I visit with chiropractors, physical therapists and family doctors, who all treat me for lower back pain. I have changed gynecologist offices at this point. He decided to change my birth control pills to a different brand. I’m in so much pain, I can’t even brush my teeth without leaning on the counter. I can’t do anything without pain. A friend of mine, suggests I go see her gynecologist for a 3rd opinion.
Dr David Mowery was the first doctor to know exactly what was wrong with me without even blinking an eye. He sent me the next day for an ultra sound and had me back in his office 2 days later. This is when my life changed forever. He informs me that I have a growth on both of my ovaries. He says we need to do surgery immediately to remove them. He also informs me that if he goes in, does a biopsy and it turns out to be cancer, he will be giving me a full hysterectomy, otherwise he will not do the surgery. You see, he had a woman a month before that had the same thing wrong and she made the choice that she wanted to be closed back up so she could have children. She didn’t want a full hysterectomy. She died 3 weeks later, never having the choice to have those children she so wanted. I had to make a choice. I always knew I wanted children, but I also wanted to live. I was taking the chance that maybe it wasn’t cancer. So, I told him I understood. He scheduled me for surgery the following week. I was so scared to have surgery, I had never even had a broken bone before and here I was, 22 and going to have major surgery. When I woke up from the surgery, I was devastated to know that not only did I have 2 softball size cancerous tumors on my ovaries but I would also never be able to birth my own children.
Dr. Mowery had saved my life, but it was forever changed. I met with Dr Mowery after the surgery and he explained the research on ovarian cancer (especially my type) was very limited. I was a very rare case. He said from what research he could find, he believed if I was free and clear of the cancer for 5 years, then what small studies there are, show that I should be good for the rest of my life. He put me on a hormone pill to keep me from going in to early menopause. He said I did not have to have chemo because he was able to get the whole tumor on both sides. Again, I was so thankful I didn’t give up, I had essentially saved my own life by going to see him. I stayed with Dr Mowery for 3 more years while I lived in Florida, “cancer free”- or so I thought.
I am now 26 and living in Michigan. I had to find a new doctor. I was referred to a doctor in Lansing. This doctor was super intelligent, very informed in the world of Ovarian Cancer and broke my heart. He informed me that my type of cancer will probably never go away. Matter of fact, I have a 90% chance that it will come back. I was devastated yet again. I was so looking forward to that 5 years cancer-free. He also informs me that the hormone pill I was taking, was actually feeding the cancer. My type of cancer feeds off the hormones in my body and I was actually giving it more food. After a year or so with this doctor, 2 exploratory surgeries, no medicine and taking away the hormone pills, he left and moved to Detroit. I was now in need of ANOTHER new doctor.
This begins my journey with University of Michigan Cancer Center – Dr Kevin Reynolds. The first time we meet him, we realize we have met the smartest person we have ever crossed paths with. Not only is he the head of the Gynecological Oncology department but he can draw up side down and he knows a TON about my cancer. It was really exciting to talk to him. I felt safe with him immediately. We started out by monitoring a blood test called CA125 and using a hormone blocker. We learned that as my disease grew, my CA125 number would increase. For years we were able to just monitor it. Other than having my gall bladder out because it was acting up, I was feeling great and had a positive attitude about living with cancer.
Fast forward to March of 2013. I am 37 years old, in the best shape of my life, running every day and feeling great. BOOM, I start feeling what I think is a hernia in my stomach. Dr Reynolds decides to do some tests because my CA125 is increasing. The CT scan shows another large tumor that is growing in my spleen. Another surgery is inevitable, but this time we will need to follow it with chemo. He explains to us that we need to think of the tumor as a dandelion. You can pluck the dandelion out of the yard but the seeds go all over. The surgery was plucking the tumor out, the chemo was going to get all the seeds. I was absolutely devastated yet again. How was this happening to me again!!! I am married, adopted 2 boys that were 4 and 5 and didn’t know how we were going to get through this. Courage and support, that is how we would prevail. So, we go through another major surgery and follow it with platinum chemo. I thought this was the worst time of my life. I had lost my hair and felt crappy for months. I had to push myself to work every day I could, my amazing husband pushed me to look at the bright side (I was alive) and we made it through. My CA125 went down to a normal range, which had never happened before and it looked like the chemo worked and the cancer was gone! We were so excited. We followed it up with a hormone blocker and were in the clear. I was even able to spread my visits out to every 6 months.
4 ½ years later, in October of 2017 at one of my normal 6 month visits, we started seeing another increase in my CA125. We monitor it for about 6-8 months before we decide I need to do chemo yet again. This time a different type of chemo, it doesn’t make my hair fall out, but I will have fatigue and all the other symptoms. I was supposed to have 6 sessions of this chemo, one every 21 days. I made it through 3 of them before we stopped treatment because it was actually doing the opposite of what we wanted. It was actually growing the cancer.
Dr Reynolds decided to have genetic testing done on me to see if there was an oral chemo pill that I could take instead of the infusion. It came back I had a BRCA gene mutation. They recommended using an oral PARP inhibitor called Rubraca. So we started using this in April of 2018. I had a severe reaction to the sun but it was working! My numbers were coming down and my scans were showing no growth.
I have been on Rubraca for about 4 years. My skin has not seen the sun in 4 years because Rubraca + Sun = disaster but I have learned to live with this because again I was alive! I was only seeing Dr Reynolds every 3 months because we were doing well!
January 2021 we start seeing an increase in my CA125. Now at this point we were not panicking. If Dr Reynolds doesn’t panic, we do not panic. We monitor everything closely but we keep seeing increases. We do a CT scan in June that shows growth, we do a PET scan in September that shows the growth is definitely cancerous. So Dr Reynolds decides we need to do another type of genetic testing, this time from the tumor they took out in 2013. I didn’t know they could do that! WOW. He said there are 50 more genetic tests that have been created in the past 5 years and they were making new medicine all the time. I wasn’t worried.
October of 2021 I get the worst news ever – Dr Reynolds is retiring. The man that saved my life for the 2nd time, the one that doesn’t panic because he always has a back up plan, was leaving me. I was devastated yet again. He assured me I was in good hands and that I would actually have his wife as a doctor. Well I was ok with that because hey, at least she could ask his opinion if there was ever an issue. SO we decided this wasn’t that bad.
In April of 2022 we decide it’s time to move to a different medicine as the Rubraca is no longer working like it was. The genetic testing had come back and there was a medicine called Trametinib (aka Mekinist) that would work directly on my specific type of genetic mutation. It works by blocking the action of an abnormal protein that signals cancer cells to multiply. So now with a new doctor and a new medicine we felt like we were on the right track. I start taking this drug and no side effects for the first 12 days, I was feeling great. Then day 13 hits and I start seeing a change in the skin on my face. It had a rash coming on. I was also having trouble keeping food down. I could only eat certain things or I would throw it up. So I called the doctor, they prescribed me something for the nausea. Within 2 days my face was red all over and starting to get sore, a week later and I had a rash that covered my whole face and hurt so bad I couldn’t touch it. I couldn’t put anything on it, I couldn’t sleep, take a shower, anything without crying. I was miserable.
The dermatologists at U of M prescribed me several things to try, nothing worked. By the time I went back to see my doctor a month later, I was so miserable I couldn’t take it anymore. She told me to stop taking it, we would take a 2-3 week break and get it cleared up then make a plan. In the mean time, we had done blood work and my CA125 went down to the lowest it had ever been, even after chemo. Now we had to make a decision, do we take it or not. It was working on the cancer but I couldn’t handle the side effects. So we came up with a plan of taking the lowest dose possible and going on pill for 7 days, then off for 7 days. That worked for about 4 months then my numbers started increasing AND I get more bad news. My doctor is moving out of state. Her and Dr Reynolds would be moving away because she got her dream job. Now I’m in need of another doctor AGAIN! Uhhhh!
So I’m 47 years old, my cancer is growing again and I am referred to yet another doctor. Why is this happening to me? Why can’t this be easy? We meet with what is still my current doctor. We keep the medicine the same dose and we monitor. We do a CT scan in September, January and then in April, the whole time my CA125 is rising. The CT scans shows increasing disease. Follow it up with a PET scan and it is decided, it’s back and the dose of medicine we are on is not working. Why we didn’t increase the dosage as we went, I have no idea!
May of 2023 the tumor board and my doctor meet and decide the best course of action is another surgery. I have tumors on my stomach, colon, liver, and all in my bowels. The plan is to go in and remove all of the tumor that they can, then follow it up with another treatment. We are not sure what treatment at this point as we aren’t sure what will be left after surgery. The doctor said more than likely I would need a bowel resection and I would be in the hospital at least one, possibly 2 weeks. Surgery is set for June 6th.
June 6th, we are ready for surgery. I have a positive attitude, I am mentally prepared to go in and get this done and move on to the next step, only life doesn’t always go the way you think. While in the surgery, they find that the cancer has grown even more than they could see in the scans. It was worse than they thought. It was in the bladder and I would end up with a permanent urine bag and all in the bowel and they would have to do a full resection and I would need a permanent colostomy bag and even after all of that, they still would not get it all because it was all in the scar tissue from previous surgeries. They decided to close me back up giving me a better chance to heal from a less invasive surgery and get me to treatment faster. I wake up from surgery, devastated yet again. But my hubby being who he is, gives me one day to feel sorry for myself. That’s our thing, you get one day and then it’s back to work. This has pulled me through a lot of rough times in my life.
Today is June 27th and we are still no closer to a treatment plan. Since my surgery 3 weeks ago, it has been a crazy waiting game, and a horrible one! The tumor board at U of M met and decided that my best course of action was a clinical trial at Cleveland Clinic. So I waited for a week only to find out that Cleveland Clinic no longer has that trial. They suggested I go to Ohio State University in Columbus Ohio for the same clinical trial. U of M cannot get this medicine. I am now on my 3rd day of waiting for a phone call from OSU to even find out if I qualify and then I have to wait for approval from my insurance company. Waiting… it breaks a person spirit.
I have been fighting this disease for over 25 years. I have the best support group, family, and friends that a person can ask for, and yet I still have to have the courage of a lion. I fight every day to keep a positive attitude and it is exhausting. My husband is my rock. Him and my 2 boys give me the courage to keep moving forward and the strength to not feel sorry for myself. I thank god every day for them, I would not be where I am without them. My family and my community take such good care of us and we are so grateful to them-it really does take a village. But my family is also supporting a brother that now has cancer - another blow to the courage. I feel sometimes like I am stuck in an elevator going from the basement to the pent house of a sky-rise building and I cannot get off, back and forth, back and forth I go. BUT, I will not give up. I will not lose hope. My story does not end here. I know my story is long and full of lots of information, but I promised my friend that one day I would write it and if it can help even one person to not give up and to keep moving forward each day, then it is worth the time spent writing. I’m not sure what the future brings but “get busy living-whatever it takes”! To be continued…
July 7th update: Since writing this, I have FINALLY received a call and I have my first consultation with a doctor at "The James" in Columbus, OH. to work on a new clinical trial that will hopefully work for my disease!
July 18th update: Met Dr Chambers at Ohio State and loved her right off the jump. She got me a spot in the clinical trial that uses immunotherapy Cemiplimab in combination with targeted therapy REGN5668. We head down to Ohio to start all the testing. I will have to do an eye exam, MRI, CT scan, Echocardiogram, EKG, bloodwork and a urine sample this week and they are setting me up for a biopsy next week. If all tests come out good, then we can start treatment. The treatment will run like this. I will be admitted into the hospital (yes they have to monitor you on this one) on Tuesday nights and they slowly give the treatment over 4 hours. I could be in the hospital for 24-72 hours depending on how my body reacts to the treatment. We do that for 4-6 weeks of the intense treatment, then once a week on Monday's after that. Even though it's going to be rough driving 5 hours one way and putting 560 miles on a vehicle once a week for who knows how long - LIVING IS WORTH THE SACRIFICE! #WHATEVERITTAKES. Those are the words I "LIVE" by now! Stay tuned for more updates...