Written by:

Curtis Garbett

When I was 38, my symptoms started with me urinating more frequently than usual, feeling tired from time to time, and occasional back pain; however, the symptoms would come and go.  At times there was hematuria, but it would come and go and not show up for weeks and be very small.  I never thought I had bladder cancer or any cancer since there is no history of cancer in the family.  

I continued with my daily activities attending family get-togethers since the holidays were approaching.  My family started to notice my frequent trips to the bathroom and started to get concerned.  I would tell them I have an appointment with my PCP coming up soon by providing that answer that seemed to take the focus off me for the moment.  

I remember back to Halloween 2015, and I had to attend a family get together with my eyes bloodshot from straining so hard to urinate, still having no idea a tumor was inside my bladder blocking the urine flow.  I remember my family asking me about my eyes, and I would say "its allergies." I mean, I did have allergies so I could get away with that explanation for the time being.  

I did not want to do anything to disrupt Thanksgiving and Christmas I had an appointment with my PCP after the first of the year.  My symptoms increased, making it more challenging to attend classes, work, spend time with family and friends.  I still even took trips out to New Mexico to visit my sister, and I went on a trip with friends to Atlanta a week before I was hospitalized. A trip I should have never been on thinking back to my symptoms.  Thinking back five years ago, I wonder how did I make it through all that and all the strain I was putting on my body.  

Why did I put myself through the pain, the constant worry of trying to hide what I was going through? Was it shame? Was I scared as of what could be going on inside my body? I mean, I even tried to resolve what was happening by turning to google to research my symptoms.  Thinking back to those times, I feel stupid.  I am a smart and educated person. I should have just gone to the doctor as soon as my symptoms got that severe rather than hide them every day.  

Finally, the day came when I went to see my PCP, still trying to hide my symptoms, but I knew it was only a matter of time before my blood work indicated something was going on inside my body.  Sure enough, my PCP called me the next day told me my kidney function was critically high, and I needed to see a nephrologist immediately. 

So, I did as instructed and went to see the nephrologist, of course, I knew no hiding anything anymore.  The nephrologist drew many tubes of blood testing for everything possible it seemed to me.  The doctor called first thing the next morning instructing me I needed to be admitted to the hospital, of course, my response was "I have a family trip this weekend can this wait till Monday?" The nephrologist's answer was no; I was basically in renal failure; my kidneys were shutting down.

 

Once I got off the phone with the doctor, I called my work to let them know what was going on.  Then I called my mom, balling my eyes out because I was scared of the unknown, and going to the hospital meant things must be pretty severe! Of course, they were severe; I had a cancerous tumor the size of a baseball in my bladder.

In February 2015, I was admitted into the hospital, and the tumor in my bladder was identified.  I had a TURP, which showed Papillary urothelial carcinoma, a low grade with foci suspicious for subepithelial invasion.

 

A rare fragment of muscle, with no evidence of invasion.  I then had another TURP in February 2015 and had a right double J stent placed.  After being hospitalized for two weeks, I began having regular cystoscopies and follow up visits with my Urologist.   For the next nine months, everything was going well.  My cystoscopies were coming back all clear, and there were no signs of cancer in my bladder.

In the video, to the left, Dr. Michael Harrison introduces Curtis Garbett at the 2018 Crush It For Curtis Foundation Biden Cancer Community Sumit at Duke Cancer Institute.  Dr. Harrison talks about what an inspiration Curtis is to him and highlights Curtis's Bladder Cancer advocacy work.

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In December 2015, a CT scan showed spots that were concerning to my Urologist in my lung and retroperitoneal node.  My Urologist then referred me to see a Medical Oncologist. On December 31, 2015, I was diagnosed with Stage IV bladder cancer at the age of 39, receiving a grim survival statistics of one to two years.

 

Over the next five months, I had an open lung biopsy to remove the lung nodules, port placement, genetic testing, and received six cycles of gemcitabine and cisplatin. During this time, I would also visit Duke Cancer Institute to get established as a patient if my cancer ever returned; that way, I would have more treatment options available to me. During the six cycles of chemotherapy, it was a scary time. Still, I had an excellent medical team that provided me with education and support, as well as a great support system from my family.

 

Once I finished Chemotherapy in May 2016, my CT scans showed no evidence of disease. Over the next 11 months, I would have surveillance check-ups, which included CT scans and cystoscopies every three months, and I continued to hear the great news" no evidence of disease."​

 

In April 2017, a recent CT showed mediastinal adenopathy. I was shocked to hear this news from my Oncologist. The next step was to return to Duke Cancer Institute and explore what clinical trials would be available to me. I was able to start the Incyte 101 clinical trial in May 2017, making me the second person in the world to receive the study drug and Pembrolizumab. In 2017 Curtis was awarded the 2017 Best of BCAN Award in appreciation for volunteer excellence and commitment to the Bladder Cancer community.

 

In 2018 my Bladder Cancer returned, and I was treated again receiving Immunotherapy and FGFR inhibitor. The treatment worked to shrink the cancer tumors! 

 

In December 2018, I underwent immunotherapy and FGFR inhibitor treatment for metastatic bladder cancer. I also participated in a research project that incorporates cardiorespiratory fitness and strength. Exercise also affects the immune system by moving cells capable of fighting infections and cancers into the bloodstream. Further, acute exercise also redistributes blood flow to organs and reduces blood flow to the stomach. Therefore, acute exercise during infusion therapy has the potential to reduce side-effects such as nausea and fatigue and improve the effectiveness of cancer therapies. This study aims to determine if these redistribution of immune cells are similar in patients with cancer and what the effects of infusion therapy are. 

 

Bladder Cancer treatment has been an emotional and scary time for my family and me, filled with a lot of unknowns and questions. I faced real challenges of dealing with the diagnosis and treatment, but of course, I worried about what would happen to my family and me, and why did this happen to me? I developed anxiety I deal with every day.  Anxiety tries to stop me from doing things by controlling my mind and then allowing my mind to dominate my body.  Over time I have learned how to live with anxiety and move forward with life.

 

I spend much time learning about bladder cancer and educating myself on what I can do to continue to fight cancer. I also try to find ways I can raise awareness about bladder cancer treatments and continue to get bladder cancer out there on social media. I now pay more attention to what I am eating, what products I am using, and what I am exposed too. I also live in the moment more so now than ever. I don't stress about things, and I enjoy life as much as I can.

 

I also started Crush It For Curtis Foundation in 2016, which is a foundation focused on bladder cancer and the treatments I have received throughout the years. The foundation also focuses on advancing research, changing bladder cancer stigmas, advocacy, and much more. Starting the foundation has been one of the best things I could have done to help me thrive and continue to raise awareness about a cancer that is in such great need of being talked about and advocated for.

 

I am still lucky to have a great family support system, as well as a medical team that has been patient in answering my questions, and helping me to understand my diagnosis and treatment options. My advice to newly diagnosed patients is to rely on your family and medical support system. Do not be afraid to tell your doctors and relatives what you need from them. Have discussions with your doctors and let them know you need time with them, and it is essential to have a patient-doctor relationship. Always ask as many questions as you can and make sure they have your best interests in mind all the times. Still remember you're are not alone on your cancer journey. The future looks bright!

Thank you for reading my Bladder Cancer Story,

Curtis

#crushitforcurtis #teamcrushit #cifcf

I Envision A Future Immune To Bladder Cancer is © by Curtis Garbett. All rights reserved. No part of this story my used or reproduced in any matter whatsoever without permission from Curtis Garbett by contacting information@cifcf.org

To purchase the rites to reproduce visit the CIFCF store.

 

For more information about Crush It For Curtis Foundation visit www.cifcf.org

 

Curtis Garbett is available to interviews and speaking engagements by contacting information@cifcf.org

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