Colleen’s Story: “It is important to take each day as it comes because the obstacles seem insurmountable in the beginning.”

Colleen Griffin’s journey began with a puzzling diagnosis of interstitial cystitis. Despite treatments, her symptoms persisted. Hope flickered with a mysterious back implant but a month later, strange pains led to a revealing CT scan – bladder cancer. Through chemotherapy and a radical cystectomy, she persevered with unwavering support. Today, she stands as proof of the power of resilience and support in facing life’s mysteries. Here is her story:

My medical journey started 15 years ago with a diagnosis of interstitial cystitis, and since then I have been no stranger to the urologist. I have had multiple cystoscopies, many injections of Botox to the bladder, a very restricted diet, and many medications to quell the painful symptoms such as the urge to urinate every 15 minutes and severe pain due to inflammation. In July of 2021, I had a neurotransmitter implanted in my back to help calm the nerve innervating the bladder. I was extremely excited about the neurotransmitter thinking, “Great, I won’t have to go in now quarterly for Botox treatments.”  

About a month after the transmitter was implanted, I did not feel right. I felt like I had a severe UTI. This pain was different from my typical interstitial cystitis symptoms. I was very active, but I’d gone from hiking nine miles a day in the Black Hills several months prior to feeling poorly overall. Two urine samples showed microscopic blood with no infection, and my urologist listened to me. He said, “You know your body, I’m going to get a CT scan.” While the CT scan did not show anything in my bladder, it did show an inflamed ureter. He said, “One of the reasons could be a mass. I doubt it, but I am going to go in and look.” He performed a TURBT and found bladder cancer. It was high-grade, non-muscle invasive.

The TURBT results hit the patient portal and MyChart before my urologist contacted me. I actually learned I had cancer through MyChart. That was actually a good thing for me because, with my inquisitive mind and medical background, I started Googling “bladder cancer.”  I found BCAN and was able to assemble a whole list of questions to ask when he called about 48 hours later.

The next step was a TURBT. My urologist inserted stents during the procedure, and these were very painful.   I had a second TURBT that was clear several weeks later and scheduled my follow-up cystoscopy for three months after that. We discussed BCG, but my urologist felt that I would not tolerate it because of my interstitial cystitis. I was miserable for those next three months. I was in a lot of pain, had an inflamed lymph node, and had visible blood in my urine after any activity. I went back to the urology office four separate times. Each time, my concerns were explained away as common reactions.

My urologist was shocked when the follow-up cystoscopy three months later showed my bladder cancer was back and had invaded my urethra. He did not see that coming. He then referred me to a medical oncologist who saw me quickly and took over my care. She wanted to biopsy the palpable lymph node.  My healthcare team said, “It’ll be three weeks before we can get you in.” I worked at the hospital and pulled a few strings to get in a little bit earlier.  The biopsy showed that cancer had invaded the groin lymph nodes, and I needed to have systemic chemotherapy.

“Wait” is a word we cancer patients hear far too often. My oncologist recommended a port for the Cisplatin and Gemzar infusions, and there were delays with the hospital being able to schedule the procedure.  The oncology team scheduled me to start the chemo saying, “We ‘ll do it through an IV if we need to,” and I was so grateful for their proactive approach.  

I began systemic chemotherapy in March of 2022.

I was working at the time and had chemo on Fridays. I was knocked out Friday, Saturday, Sunday, and Monday and went back to work Tuesday through Thursday. I had four rounds. The first round was Cisplatin, the second round was Gemzar, then a week off, then started over.

It was grueling. I was nauseous the entire time. I could hardly eat.  My white blood cells immediately bottomed out, but I was able to work until that third round of chemo, which flattened me. I could not even get off the couch.

That is when I had to share my situation with my colleagues.  I had delayed this because oftentimes when you share something like this, people make it about themselves and then you end up comforting them. I did not have the bandwidth to do that mentally or physically. But at that point, I had to share because I was missing work.

I got through the chemotherapy treatments and learned to be my own advocate. I was so tired and sometimes could hardly sit up. I called my oncologist and asked if I could come in for steroids and fluids, and she agreed. I then started going in every Monday for scheduled steroids and fluids so that I could at least be functional.

The chemotherapy, as difficult as it is, was necessary. I finished chemo on May 20th, 2022, my birthday. I then met with Dr. Ronney Abaza at Central Ohio Urology Group, a nationally recognized robotic surgeon who would perform my radical cystectomy. He was very clear with me and said, “If I don’t see that your cancer is gone from the chemo, I am not going to do this operation because it’s very, very aggressive and, if you don’t have clear scans prior, the outcome’s not good.”

My next scan in July of 2022 was clear, and because the cancer was aggressive, my radical cystectomy was scheduled for a month later on August 1st.  Dr. Abaza informed me that I would have an ileal conduit with an ostomy bag because the cancer had invaded my urethra. I was not offered the option of choosing the type of diversion for me.

I was in the hospital for 48 hours following my robotic surgery.  I had no complications, and because this was during the pandemic, Dr. Abaza wanted me out of there as soon as possible.

I had wonderful home care, which was a godsend. Nurses came shortly after I was home and helped me with bag changes through that first month.  I was so weak and because I had many lymph nodes removed, I could not even lift my legs onto the bed. My blood pressure was exceptionally low, and I had to keep drinking fluids though I felt like I was going to throw up. This was new for me since I had been active throughout my life as a long-distance runner and cyclist.

The hardest part about adjusting to life without my bladder was the diagnosis and learning that I needed to have a bag. I remember talking to my sister, who is a physician, saying all the options for bladder removal were horrifying. Having had a painful bladder for 15 years, I will say, some aspects of my life are a lot better. I do not have to find a bathroom every 15 minutes. I do not have awful pain.  Through a series of trial and error and working with ostomy nurses, I have found a bag system that works fairly well when it comes to leaks.

The initial adjustment to a bladder cancer diagnosis is difficult. It is a lot to digest.  I decided early on, “This is the way it goes. I need to have all my energy moving forward, not looking back, not asking why, and not being terrified.” That is where BCAN was so helpful and why I want to give back. I felt prepared with resources from my oncologist, surgeon, and BCAN.

I used BCAN resources to educate my family about what was about to happen. The way BCAN explains terminology such as ileal conduit and radical cystectomy is extremely helpful. All the material on the BCAN website is well-written and easy to use.  

It took about eight months to feel like myself again. I got a cane and started to walk around my neighborhood about two weeks after surgery even though I was not feeling it. My amazing partner, Jim, encouraged me every step of the way. He has been right beside me through this journey, including taking me to all appointments. My daughter lives in Vermont, which is far from where I live in Ohio. She came to stay with me for a week after the surgery.  My sister also came to help, and my son, who lives in town, has been terrific. I have been lucky to have friends and family that have supported me through this.

I was scheduled to go back to work six weeks after the surgery which was too soon for me.  Although I was able to work from home, I was still weak, nauseous, and did not have an appetite for months.  I had been pondering retiring, so I went back to work for about a month and retired.

I so appreciate BCAN and Inspire as they remind me to give myself some grace as recovery takes time. I went from bicycle rides of over sixty miles to not being able to walk down the front steps.  It’s a lot but you have to take small steps and keep going.

It is important to take each day as it comes because the obstacles seem insurmountable in the beginning. I have run many marathons, and that training has helped me to keep going, even if the steps are small.  I’m happy to report No Evidence of Disease (NED) on my most recent scan.

Receiving a bladder cancer diagnosis is overwhelming. It is often surprising. We each have our own journey. You may have friends and family and the medical community to support you, but in the end, it is up to you.