Gary and Cecilia: Be Thankful That Every Day is Another Day of Success

BCAN had the pleasure of speaking with Gary and Cecilia DeVore. Gary was diagnosed with stage three muscle-invasive bladder cancer in January 2021. The DeVores shed light on their journey from a caregiver and patient point of view.

BCAN: What symptoms did you experience before your diagnosis?

Gary: I noticed tiny blood spots in my urine in December 2020. My wife and I discussed it with my primary physician, who then referred me to a urologist. Once we saw the urologist, he performed a cystoscopy and discovered the tumor. Soon after, I received a biopsy that confirmed it was cancerous.

Cecilia: I want to add, Gary started by saying that after we had the confirmation that it was bladder cancer, we decided to go to Moffitt Cancer Center because of a recommendation from his family doctor. I met with the doctors who told us that we needed to treat the bladder cancer as soon as possible with chemo and radiation or remove his bladder because his cancer was so aggressive.

Gary was not prepared to have his bladder removed, so we decided to go with chemotherapy and radiation treatment instead.

Gary: Since Moffit was some distance from where we lived in Sarasota, FL, we assembled a team of doctors locally at Sarasota Memorial Hospital. We had a urologist, an oncologist, and a radiation therapy doctor. We were fortunate that we assembled a talented team of doctors, and we had the oncologist take the team’s lead. He was the one who took control of all the communications and conducted team meetings; he had everybody on speed dial. That worked out to be great.

BCAN: You mentioned receiving 37 rounds of chemo and radiation treatment. Is that correct?

Gary: Yes, that is correct. The doctors were looking to do 25 radiation treatments on my bladder. They were targeting one specific area and wanted to minimize the target, so I received radiation on only one location. I had that every day for eight weeks but the last 11 treatments were done  on my entire bladder. I finished my treatments in July.

Cecilia: In September, he underwent a CT scan and we discovered the cancer had spread to his bones, which meant it was Stage IV metastatic. Despite the doctors’ efforts to preserve his bladder and immediately after that CT scan, we scheduled the bladder removal for December 9th, 2021.

The operation was risky because Gary is a diabetic and has other health issues. The doctor even said, this is usually an eight-hour operation, but may take longer for your husband.

Gary: After my bladder and lymph nodes surrounding the bladder were removed, I chose an ileal conduit with an ostomy stoma on my right lower abdomen. Since then, I have continued with immunotherapy. I have had CT scans, and the results have been positive, so no new cancer. I am due for another CT coming up in July 2023. Now I am taking Padcev every other week.

BCAN: These are significant decisions. How did you manage?

Cecilia: As a caregiver, I had a lot of hesitation and questions at the beginning and when Gary had the surgery. I did not know anything. How would I be able to help my husband handle this? I read, asked questions, and wrote many notes. Thank God for the nurses in the hospital. They were wonderful. I needed to learn as much as possible.

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I got incredibly involved with my husband’s care with each doctor. I went to every appointment, but if you have the opportunity to have a backup or family to help, I suggest you do that. We did not want to burden our kids with what was going on. So, we managed it all together with the help of the nurses. Sometimes I forgot to eat and drink water because I was so focused on ensuring Gary was okay.

As a caregiver, a lot of the time you forget about taking care of yourself.

Gary: When I was being released, nurses prepared me to leave the hospital. Cecilia mentioned somewhere along the way that there was an ostomy specialty nurse. We requested that the nurse visit me; she had a superior level of knowledge about ostomy care. When she arrived in my room, other nurses watched her as she went through her procedures. We were all learning and observing. We had both the ostomy nurse and home health nurse come out to assist us.

Cecilia: If you have a home health aide, I suggest you have an ostomy specialist come to the house as well. For the caregiver, you need to know that what you are doing is correct. That was my fear. I don’t know if I’m doing this right or not.

Gary: Our ostomy nurse gave me a list of providers for materials and supplies. We called each one and they sent us samples of their products. During our conversations with them, we also had a learning experience. We asked tons of questions that they happily answered. They talked about what they do, what the kit would include, and how to use it. Once we received the samples, we tried them out, and Cecilia became confident in how to replace the bag. Finally, one day I said, “Okay, well, that is good for you. I have to learn how to do this too.” I had a lot to learn.

BCAN: What is something you want readers to take away from your story?

Gary: Keep your faith, and do not forget to pray and be thankful that every day is another day of success, another gift. We are fortunate to have highly successful children and families, as well as  beautiful grandchildren, but we never burdened them with the details of what we were going through.

Cecilia: You have to keep going, and if you have a good team of doctors and nurses, I do not recommend changing them. Get in touch with other caregivers who have gone through a similar situation. We had the pleasure of getting paired with a couple through BCAN’s Survivor to Survivor program, Camille and Doug, and we talked with them quite a bit.

When your friends and family ask if they can help, say “Yes, I do need help. Can you please bring me a sandwich and water? Do you want to keep company while the patient is sleeping? Yes.” You may need to run an errand, and they can stay to watch over the patient. Do not hesitate to get support.