Real Stories...

My name is Betty

"I would get down, but never felt like I was fighting this horrid disease alone!"

How did bladder cancer come into your life?

I remember that I was having my annual checkup with my gynecologist in 2007 when I happened to mention to him that I had had three kidney infections in three consecutive months.  Since I had had this same doctor for 20 years, he was alarmed. He mentioned that as far as he knew I had never had a kidney infection before. I told him that he was correct. He gave me a card and told me to go see a friend of his who was a urologist. He didn’t think I should take any chances. My gynecologist has long retired, but I feel that I owe my life to him. I took his advice and visited his friend. The day before I had my appointment, I took a quick bathroom break (as a teacher, you take them when you can get them) and urinated pure blood. It scared the bejeebers out of me to say the least.  The next day the urologist was very concerned when I told him what I had experienced. They took blood, urine, etc. and sent me for all kinds of testing – then gave me an appointment to come back in 2 weeks. 

In the meantime, my youngest daughter in Idaho, who had a high-risk pregnancy going on, was told by her doctor that he was going to induce labor the following week. I quickly hopped on a plane for Boise, putting aside all of my concerns for worries about my daughter and granddaughter. The day before my daughter was to be induced, I called my urologist in Orlando and told his nurse that I needed to change my appointment – that I was out of state and wanted not only to be at my youngest daughter’s high-risk birth but to help her with the new baby. Much to my surprise, the nurse asked me to hold the line please because the doctor wanted to speak with me. Dr Vaughan took the phone and told me that he understood that I wanted to be with my daughter but that I needed to come home ASAP. When I asked him why, he stated that he did not give out that kind of information over the telephone but that it was serious. I, at this point, was convinced I was dying. I didn’t want to scare my daughter during this important time in her pregnancy, so I made up some excuse about the substitute teacher becoming ill and no other could be found, so I had to go back to my class. I left the next day for Orlando. That was the longest, most agonizing flight I have ever taken.  Incidentally, I found out later that my youngest daughter was just as worried. She hadn’t bought my excuse. She knew how much I wanted to be with her at that birth and knew it had to be a life-or-death situation. She has always been way too bright and intuitive.

I arrived and met with the doctor the following day. It was the first week of December, 2007. My husband was with me. Dr Vaughan told me he had good news and bad news for me. He asked what I wanted to hear first. I told him the bad, so he told me that I had cancer. He then told me that it was bladder cancer (which supposedly was the good news) and that there was a better chance of surviving it! He told me that he and I would become very good friends because this would be a very long process, since bladder cancer likes to keep coming back. However, he emphasized that if I did exactly what he said and kept my positive attitude I would beat this disease! When he found out that I was a teacher at a psychiatric facility teaching the children who were thrown out of the public and private school systems, he told me that I was the type of patient that he had gone into the medical field to save. I thought that that was a wonderful compliment. I have to add an interesting note here about family reactions. My husband was in just as much shock as I was. When I told my son and daughter in Orlando that I had cancer, my husband added, “No, dear, the doctor said you might have cancer.” I told him, “No, my love, unfortunately, he left no doubt.” I was very lucky, though, because my children and my siblings (my parents are deceased) rallied around me. I would get down, but never felt like I was fighting this horrid disease alone!

What was the initial cancer diagnosis?

My initial diagnosis was transitional carcinoma (papillary).

On December 17, 2007 I had my first TURBT. He removed three fairly good-sized tumors. He followed up with 6 weeks of BCG. I got the flu-like symptoms, nausea, and fatigue but went back to my classroom the day after each treatment. I remember that the cafeteria staff was so very special that they always had a cup of chicken consume for me because that was about all I could keep down. My students were wonderful too. I found out later that the morning of my surgery, the students refused to go to class until they all held hands and prayed for me – and these were kids with a lot of problems of their own. Yet, they took the time to pray for me. I was so touched.

Well, my going back to teach the day after my BCG treatment came to a quick end when I fainted in my classroom. When I called the doctor, he said he was not aware that I was returning to work the very next day and planned on sending a message to the school stating that I would require at the very least 2 days off with each treatment and more if needed. Unfortunately, I soon developed an allergic reaction to the BCG. 

For a time now and then I was cancer free. However, during this time my low-grade cancer changed and came back as CIS, which I was informed was high grade and much more dangerous. I was changed to Mitomycin C. I did a whole year of Mitomycin C chemotherapy. I won’t go into all the details of the side effects I had with it – which were quite a few. It messed up my gall bladder to the point that I had to have it removed, but I was told that it could have affected my heart, so I was grateful. You can live without a gall bladder.

Once again for many months I would have cancer-free periods, but my bladder cancer just liked me too much. It kept coming back. Finally in July 2013, I received a devastating biopsy report. The cancer was in the lamina propria, so the bladder needed to come out. I had my RC done on July 26, 2013. I opted for an illeal conduit with a stoma. The surgery was pretty rough for me, as the cancer had already taken quite a toll on my body. I spent 3 weeks in the hospital and 5 months with home healthcare. I eventually had to have a wound vacuum in order to close my wound. I had managed to get an infection that was pretty resistant to antibiotics. However, with a good doctor and good nurses and a cocktail of antibiotics, I managed to eventually win.

What life changes have you made now you are affected by bladder cancer?

It took me a while to get used to a new life with a bag, but I was very thankful to be here. You see, during my journey I had met and buried at least a half dozen people with my very same disease. I even felt guilty at times for being the only survivor of the group.

What positives can you share about your experience? 

I have now been Cancer free for over two years. Life with a bag is different and a challenge at times, but it is still life! I, for one, am grateful to still be alive. 

How has Fight Bladder Cancer helped you?

While looking for a US support group for bladder cancer patients with no luck, I stumbled upon one in the UK. I feel very blessed for this too. I fell into the hands of some wonderful people who not only accepted me into their group but gave me the most incredible, loving support. They didn’t care that I was across the pond! I cannot begin to tell you how important this Fight Bladder Cancer support group has been to me – even when I lost my husband suddenly, they were there holding me up. When a storm damaged my roof and a lot of my memories of my husband were lost, I was not alone.  They were with me all the way. I try to do a good job at giving support to new members because I was treated so very well. By the way, 'wee' are quite international now!

I have had to have several surgeries lately (one for a stoma hernia and then a total knee replacement after an accident), but I plan on visiting the UK and matching faces to already familiar names on the FBC support group. I love my Wee Buddies and am not ashamed to admit it. I am honored to be part of such an incredible group and very proud of the amazing job they are doing at spreading awareness of the dangers of bladder cancer. You see, the media has it all wrong. Even one of my children didn’t take me seriously at first when I had my bladder cancer. She told me that I was not in any danger of dying. Through the information that this group has shared on social media such as Facebook, she has a whole new view now that she has seen the studies coming out of the UK – Kudos for a job well done! We here in the USA need to catch up to all of you in the UK, but you are certainly providing an excellent example to follow.

What advice would you give someone who has just been diagnosed?

My advice to those newly diagnosed would be to be proactive. Nobody is going to be as interested in your survival as you! Question everything. In the beginning my doctor told me that it was good news that it was bladder cancer – that I had an 80% chance of survival. Because of this statement, my daughter actually told me that I was not in any danger of dying. She changed her tune as I began burying friends who had done chemo with me. They were dying from bladder cancer.

Join a good support group like ours at Fight Bladder Cancer. There you can get the facts, good advice, and incredible support from people who have been through or are currently going through the same thing as you! I will always be grateful to Andrew for starting the incredible FBC group. I was feeling so very alone when I stumbled upon this wonderful group. It has been a lifeline for me!

 

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