Back to when it all began....
In the spring of 2013, I noticed some blood in my urine, and went to my doctor. He thought it could be a urinary tract infection and prescribed an antibiotic. The blood went away for awhile, but unbelievably, came back on my birthday, May 19. My very thorough doctor ordered a renal ultrasound. I went back to his office to get the result. He came in and said, "Darn it, we found something. It's a tumor in your bladder." I began shaking and crying. My mom had died of bladder cancer in 2006, so I knew what I was up against. I said to my doctor, "Well, I'm sunk because my mom had bladder cancer and she died anyway." He spun around, looked very hard at me, and said "Don't you even go there!" I knew then that he was going to fight with me and support me no matter what.
He recommended that I go to the urologist down the hall from his office at Baylor Dallas, and it was the son of the urologist who treated my mom. His name is Joshua Fine. I felt comfortable going to him because his dad had done so much to help my mom.
He did a cystoscopy, which is the way they are able to look into a bladder, and there it was, an ugly looking tumor that was a purplish color and had the shape of a cauliflower. It was the most disgusting sight I have ever seen in my life. Dr. Josh said the plan of action was immediate surgery to get it out of there, and then it could be determined what type of cells it was comprised of, and that would determine the course of treatment. I found myself in pre-op ready for surgery within the next few days. In the meantime, I had to get a CT scan done of the area surrounding my bladder to make sure it had not spread anywhere else. The CT scan looked good-the tumor was confined to the bladder.
The day of the surgery went fine. Post surgery there was much pain, especially when I had to go to the bathroom. However, I was just happy to have the tumor out and awaited the pathology report.
The next few days brought the pathology report-it was indeed cancer-urothelial cell carcinoma. The tumor had invaded into the lamina propria, the second layer of the bladder. It had NOT invaded into the muscle wall, which was good news. Tumors that invade the muscle wall are more likely to spread into other parts of the body, or as is commonly known, metastasize. Dr. Josh felt confident that he had resected or gotten all the tumor out, but the pathologist was not so sure. I was given the news that they wanted me to go back in and do another post op biopsy to make sure the margins were clean and that all visible cancer cells had been removed. Dr. Josh agreed to do this to satisfy the pathologist, and I agreed to do it because of Dr. Josh! The result was-Dr. Josh was right. The 2nd biopsy came out clear as well.
He recommended that I go to the urologist down the hall from his office at Baylor Dallas, and it was the son of the urologist who treated my mom. His name is Joshua Fine. I felt comfortable going to him because his dad had done so much to help my mom.
He did a cystoscopy, which is the way they are able to look into a bladder, and there it was, an ugly looking tumor that was a purplish color and had the shape of a cauliflower. It was the most disgusting sight I have ever seen in my life. Dr. Josh said the plan of action was immediate surgery to get it out of there, and then it could be determined what type of cells it was comprised of, and that would determine the course of treatment. I found myself in pre-op ready for surgery within the next few days. In the meantime, I had to get a CT scan done of the area surrounding my bladder to make sure it had not spread anywhere else. The CT scan looked good-the tumor was confined to the bladder.
The day of the surgery went fine. Post surgery there was much pain, especially when I had to go to the bathroom. However, I was just happy to have the tumor out and awaited the pathology report.
The next few days brought the pathology report-it was indeed cancer-urothelial cell carcinoma. The tumor had invaded into the lamina propria, the second layer of the bladder. It had NOT invaded into the muscle wall, which was good news. Tumors that invade the muscle wall are more likely to spread into other parts of the body, or as is commonly known, metastasize. Dr. Josh felt confident that he had resected or gotten all the tumor out, but the pathologist was not so sure. I was given the news that they wanted me to go back in and do another post op biopsy to make sure the margins were clean and that all visible cancer cells had been removed. Dr. Josh agreed to do this to satisfy the pathologist, and I agreed to do it because of Dr. Josh! The result was-Dr. Josh was right. The 2nd biopsy came out clear as well.
Time for Treatment
It was now time for treatment. The gold standard for treatment of bladder cancer that has not invaded the muscle wall is BCG, also known as Bacillus Calmette Guerin. It is not chemotherapy. It is immunotherapy and has proven effective with many bladder cancer cases. It is derived from the tuberculosis vaccine, interestingly enough. I was nervous about having the treatment because during my college years, I had a positive TB test one time and had to take some medicine for a period of time to make sure I did not get TB. After talking with Dr. Josh, he said he thought it was safe for me to do the BCG, so I agreed to do it.
The way the drug is administered is through a catheter, directly into the bladder. You hold the BCG in your bladder for up to 2 hours and then void it by going to the bathroom. You learn not to drink much if anything a few hours before your treatment! It is administered in the doctor's office and you can go home afterwards. I had a treatment once a week for 6 weeks. After each of the first four treatments, I had the chills, and a fever and had to go to bed for a few hours. It was like I had a mini flu type feeling for a few hours, but otherwise OK after.
After treatment 5, I had an inflammatory reaction where a few of my joints swelled. I took my anti inflammatory drug, and it helped somewhat. I didn't think much about it.
The 6th and final treatment was the week prior to Labor Day. I had some joint swelling as well to start off. However, the 2nd day after the final treatment, I woke up around 3 a.m. in tremendous pain. I was crying my eyes out! My husband woke up and we tried to figure out what was going on. I tried to stand and I could not-my legs would not support me at all. I looked at my feet and knees and they were swollen almost twice their size. The pain was excruciating. We called my doctor and he said to get to the ER ASAP. We got my neighbor out of bed to help Pete, my husband, get me to the car. We would take a few steps (with me screaming in pain with each step) and then sit for a minute Reggie, our neighbor was hanging on to me with one arm and dragging a chair with the other. After about 25 minutes, we made it to the car somehow. By the way, I was being stubborn, and not wanting to pay a huge amount for an ambulance, I had insisted we drive to the ER in our car!
We got to the ER and by this time I was shaking uncontrollably from the pain. They did a lot of x rays and blood work, as well as give me a LOT of morphine. Taking x-rays was almost more than I could handle because of how I had to position my body. After the morphine kicked in, it helped tremendously. My blood work showed my sed rate (a marker for level of inflammation in your blood) was 99, which is off the charts. I was in the ER for several hours, and was able to go home because they were able to get the pain under control, however, the swelling of my joints was still the same and I could not walk. It was Saturday of Labor Day weekend, and none of my doctors were in town. When we returned home, with Reggie and Pete on either side of me, we managed to get from the car to the couch in the living room.
Saturday, Sunday and Monday, we waited for my doctors to get back in town. Pete went and bought me a bedside potty chair because I could not walk to the bathroom! I slept on the couch which is where I was parked when I returned from the hospital. Tuesday morning early, I called my internist, Dr. Owen, to tell him what happened. He did a conference call with Dr. Josh, and Dr. Willis, my rheumatologist. They decided Dr. Willis should treat me, and that the BCG had caused an unbelievably big inflammatory response in my body. My body had basically gone bezerk and overreacted to the BCG immunotherapy. He put me on high doses of Prednisone to get the swelling down. For the next week and a half, I could not walk. We got a wheelchair, and our friend Dave, built a ramp for the front of our house. After a week and a half, I was finally able to stand a walk a few steps. After that, I did a little more each day and was eventually able to walk again normally by about the 3rd week in September.
I have done some research since the incident, and apparently there are many who have the BCG treatment that get the reaction that I did. It is mainly people like me who also have rheumatological issues. I have arthritis and even though it is mild, it puts my body in a state of inflammation which is sensitive to outside "invaders" such as BCG treatment. My internist told me that if the bladder cancer ever comes back, I am not allowed to do any more BCG, which I wouldn't want to anyway!
Right now, as you can see from the above picture, I am still in remission from bladder cancer. I go every 6 months now to get a cystoscopy to check for any cancer. I am grateful to the Lord Jesus for HIs continued healing in my life and for Him providing good doctors who care about me and who give me the best treatments available.
I have changed my diet and also what I drink to help keep my body as healthy as possible. I very rarely drink soft drinks now, and eat lots of fruits and vegetables. I keep Kosher and eat very little red meat. I also exercise regularly and have begun a weightlifting regimen. It helps me feel accomplished and encouraged.
Bladder cancer is something I will always have to have checked out every so often, but it does not rule my life. Only the Lord Jesus does that, and that is the way I intend to keep it! To Him be all the glory!
The way the drug is administered is through a catheter, directly into the bladder. You hold the BCG in your bladder for up to 2 hours and then void it by going to the bathroom. You learn not to drink much if anything a few hours before your treatment! It is administered in the doctor's office and you can go home afterwards. I had a treatment once a week for 6 weeks. After each of the first four treatments, I had the chills, and a fever and had to go to bed for a few hours. It was like I had a mini flu type feeling for a few hours, but otherwise OK after.
After treatment 5, I had an inflammatory reaction where a few of my joints swelled. I took my anti inflammatory drug, and it helped somewhat. I didn't think much about it.
The 6th and final treatment was the week prior to Labor Day. I had some joint swelling as well to start off. However, the 2nd day after the final treatment, I woke up around 3 a.m. in tremendous pain. I was crying my eyes out! My husband woke up and we tried to figure out what was going on. I tried to stand and I could not-my legs would not support me at all. I looked at my feet and knees and they were swollen almost twice their size. The pain was excruciating. We called my doctor and he said to get to the ER ASAP. We got my neighbor out of bed to help Pete, my husband, get me to the car. We would take a few steps (with me screaming in pain with each step) and then sit for a minute Reggie, our neighbor was hanging on to me with one arm and dragging a chair with the other. After about 25 minutes, we made it to the car somehow. By the way, I was being stubborn, and not wanting to pay a huge amount for an ambulance, I had insisted we drive to the ER in our car!
We got to the ER and by this time I was shaking uncontrollably from the pain. They did a lot of x rays and blood work, as well as give me a LOT of morphine. Taking x-rays was almost more than I could handle because of how I had to position my body. After the morphine kicked in, it helped tremendously. My blood work showed my sed rate (a marker for level of inflammation in your blood) was 99, which is off the charts. I was in the ER for several hours, and was able to go home because they were able to get the pain under control, however, the swelling of my joints was still the same and I could not walk. It was Saturday of Labor Day weekend, and none of my doctors were in town. When we returned home, with Reggie and Pete on either side of me, we managed to get from the car to the couch in the living room.
Saturday, Sunday and Monday, we waited for my doctors to get back in town. Pete went and bought me a bedside potty chair because I could not walk to the bathroom! I slept on the couch which is where I was parked when I returned from the hospital. Tuesday morning early, I called my internist, Dr. Owen, to tell him what happened. He did a conference call with Dr. Josh, and Dr. Willis, my rheumatologist. They decided Dr. Willis should treat me, and that the BCG had caused an unbelievably big inflammatory response in my body. My body had basically gone bezerk and overreacted to the BCG immunotherapy. He put me on high doses of Prednisone to get the swelling down. For the next week and a half, I could not walk. We got a wheelchair, and our friend Dave, built a ramp for the front of our house. After a week and a half, I was finally able to stand a walk a few steps. After that, I did a little more each day and was eventually able to walk again normally by about the 3rd week in September.
I have done some research since the incident, and apparently there are many who have the BCG treatment that get the reaction that I did. It is mainly people like me who also have rheumatological issues. I have arthritis and even though it is mild, it puts my body in a state of inflammation which is sensitive to outside "invaders" such as BCG treatment. My internist told me that if the bladder cancer ever comes back, I am not allowed to do any more BCG, which I wouldn't want to anyway!
Right now, as you can see from the above picture, I am still in remission from bladder cancer. I go every 6 months now to get a cystoscopy to check for any cancer. I am grateful to the Lord Jesus for HIs continued healing in my life and for Him providing good doctors who care about me and who give me the best treatments available.
I have changed my diet and also what I drink to help keep my body as healthy as possible. I very rarely drink soft drinks now, and eat lots of fruits and vegetables. I keep Kosher and eat very little red meat. I also exercise regularly and have begun a weightlifting regimen. It helps me feel accomplished and encouraged.
Bladder cancer is something I will always have to have checked out every so often, but it does not rule my life. Only the Lord Jesus does that, and that is the way I intend to keep it! To Him be all the glory!
