I was diagnosed with stage IV bladder cancer in April 0f 2012. I was 34 years old. I had been in and out of the hospital prior to that because I could not urinate. As it turned out, I had tumors wrapped around part of my bladder.
When the doctor told me that I had late stage bladder cancer, I heard him talking to me but it was like I was outside of my body. I learned that I had stage IV cancer and the doctor recommended that I have my bladder removed. My head was spinning. There was no discussion of chemotherapy; my bladder had to come out. He might have considered other therapies before, but the doctor I first saw was uncomfortable operating on me. By the grace of God, he referred me to an oncologist at the Cleveland Clinic. The oncologist there discovered that the cancer had spread to my lymph nodes.
The doctor at the Cleveland Clinic recommended that I have adjuvant chemotherapy and I received Cisplatin. I did six rounds of chemo. We started in June and ended in July. I was on four very strong medications that made me very sick. The wonderful news is that shortly after starting chemo, I was able to go to the bathroom!
Although it was tough, the chemotherapy took out my cancer completely. My doctor at the Cleveland Clinic, Dr. Jason Valent, told me that I was the youngest person that he had seen get bladder cancer, I am female and I never smoked in my life. All of those did not add up to a bladder cancer diagnosis, but they were all reasons to have my bladder removed. The surgery was on September 21.
The surgery took 14 hours and I was in the hospital for about a month after. The doctors also performed a hysterectomy, which I had requested. They took out everything besides one ovary. This was a major, major operation.
It’s true what people say and that is to NOT Google your diagnosis. Like many others, I did, but the good news was that I found BCAN that way. Something just told me to click on that one link to get information and I am so glad that I did. I am so very thankful. I started communicating with other bladder cancer patients on BCAN’s online community and was STILL the youngest person in my online group. All of the people there were a lot older, but we shared the experience in that just about everyone had chemotherapy first and their bladder removed later. BCAN IS AMAZING. I am so thankful for coming across their information. It was a life saver.
I did read stories from other women though, and that made me feel better. One woman told me that she had yet to grieve her cancer and I feel the same way. And while connecting with others, I still felt lost in some ways. Why did this happen to me? I was 34 years old when I got my devastating diagnosis and my prognosis for survival was 50/50 at best.
I was also very angry. What on earth had led to me getting cancer at such a young age? My own cancer journey felt strange – my urologist seemed pretty young, and I remember being in their offices and seeing plenty of pictures of men with prostate issues – and I am female. Bladder cancer really seemed like a man’s disease.
For those who find themselves on the path that I walked, I would advise them to communicate as much as you can with your doctor and medical team – not just with the person who gave you your diagnosis. Remember also that it’s not just you who are involved; it’s your whole family.
It was hard telling my ex-husband and my son, but my son was wonderful. He was my chemo buddy. He helped me with meals, would make sure that we would go for walks, would bring me water, help me go to the bathroom and he would go to doctor’s appointments with me. My son did not complain once and that made it easier for me. He also helped cheer up others in the chemo room. He would make everyone laugh, lighten the mood and the nurses loved him.
I would also advise people, especially when they get a prognosis that involves a 50/50 chance of surviving, do not focus on the 50% chance that you might die. Try really hard not to go to a negative place in your mind – it makes everything else so much harder. I know this because after my first round of chemo, I simply did not want to fight anymore.
Also, have a plan and a path forward. I felt so much better after I went to the Cleveland Clinic because we finally had a plan, a way to attack this disease and try to save my life. If you do not feel comfortable with the plan, however, do NOT be afraid to speak up and get a second opinion. Another doctor may approach things differently. I am so very thankful that I went to the Cleveland Clinic.
I struggle sometimes with mental health; I have had that disability my entire life. I had to be off of my medications while I was in the hospital and I thought that the doctors and nurses were going to hurt me. For while, I was having panic attacks and I still have anxiety issues. Mental health is a very taboo thing, but that played a big part in my journey. When you go through chemo, anxiety, panic, and depression often accompany it, especially if you are not able to be on meds that you were one before. Had I had my medications, it would have made it a totally different experience.
What has helped me so much is becoming a mentor with the Cleveland Clinic. Doing this helps me help myself deal with it and I am still going through it. I am eight years cancer free in 2020, yet in some ways, it still feels like that did not happen to me and that I was living outside of my own body
I hope that I can continue to help others as they walk down their own bladder cancer journeys.