Dad's Story

Welcome to #gillespiestrong. Here we are dedicated to sharing dad's story and promoting a healthy lifestyle.

Fight #1

In 2017, Dad began to have some health issues. After visiting with his doctors and having numerous tests, he was diagnosed with bladder cancer. Because it was caught early enough, prognosis was good. He was given a couple of options. The option of injecting a vaccine into the bladder to try and kill the cancer or the option of surgery. Dad chose to inject the vaccine into his bladder. He had several treatments of laying on his right and left sides, front and back sides and then elimination of the vaccine. Test results shown the vaccine was not working so Dad had no other choice but to move forward with surgery. He had to decide between an ostomy or a neobladder. After much thought and conversations with the family, he decided to have a neobladder reconstruction surgery. During surgery, cancer was discovered in his prostate, as well. His bladder and prostate were removed and the neobladder was constructed out of a small portion of his small intestine.

Being Dad's first surgery, recovery was an eye-opener. Pain was a shock. Imagine a 74 year old experiencing their first major illness, their first surgery. Not only did he have to deal with the surprises of what surgery brought, he also had to learn about, and train, his new bladder. This was a frustrating and time consuming moment in time for both Dad and Mom.

To make matters worse, the creation of the neobladder had a negative impact on one of his kidneys (there was a lot of mucous build up that blocked a vessel) and caused it to lose functioning.

As time passed, everything improved. His health, his energy level, his ability to adapt to his new reality.

Due to his surgery, diagnosis of the cancer, and age, he was having scans every few months to monitor any changes in his body. In May 2019, he had a CT scan and everything looked good.

Fight #2

In June 2019, Mom and Dad noticed a decrease in Dad's energy but did not think anything of it, attributing it to age. As we approached the Fourth of July holiday, family started gathering. Some of the family took a trip to Mexico at the end of June. During this trip, Dad became very ill. He was complaining of stomach pain, he didn't want to eat (not at all normal for him!) and wanted to sleep all the time (not normal for him!). After a few days, we convinced him to go to the doctor on the resort. The doctor informed him that he was not able to run labs and recommended Dad go to the hospital. Mexico!..Hospital!..Not on the top of our list of things we wanted to do. Dad opted not to go and went back to the room to sleep. In the meantime, we reached out to family still in Kansas and had them contact Dad's doctor. His doctor said, "Go to the hospital." So off to the hospital we went.

Spending an entire day in a Mexican hospital was an experience in itself. While we were lucky to be near a private hospital, it still was a difficult and challenging process. After hours of testing and waiting, Dad was diagnosed with an infection, prescribed antibiotics and sent home. After taking antibiotics for 24 hours, he was feeling better.

The Fourth of July came and went and with each day, Dad began to feel worse and worse.

On July 9, 2019, Dad requested Mom take him to the emergency room at KU Medical Center. After many tests, a large obstruction was identified in his intestine and Dad was immediately rushed to emergency surgery. Surgery began at 4:25 p.m. Six hours later, the report came in:

A quick 'Pathology came back cancerous. Mucinous cancer (rare) and it had already spread to his lymph nodes. Stage 3 or 4.'

Devastating...and he did not even know.

Going to the hospital with abdominal pain, rushed to emergency surgery, waking almost 12 hours later in the ICU to learn you had all of your right (ascending) large intestine removed, a mass the size of a grapefruit (that wasn't seen on the CT scan from May, but could have been hidden) and now had a scar the length of your stomach, an ileostomy and a drain, would be very hard for anyone to handle.

The surgery had a huge impact on his current body functioning. The neobladder, the remaining kidney, the struggle of adapting to the changes. Each day was a struggle. What would the stage of the cancer be? How would he be feeling? What would he be able to do?

July 17, 2019, Dad was released to go home. A celebration, but a scary moment. Now, they had three different wounds to care for, learning to care for and change the ileostomy bag, as well as retraining, adapting to the neobladder. His large wound was dressed in a wound VAC. While the healing of a wound is shown to heal better and less risk of infection using this method, it was a large, painful experience for Dad to go through during the dressing changes.

Home healthcare was assigned and arrived Monday, Wednesday and Friday to help care for the wounds and help Mom and Dad learn how to adapt to their new way of life for the time being. Physical and occupational therapy came out on alternating days.

On July 24, 2019, we were told via text from family, "Dad does have stage 4 metastatic colon cancer. It's not related to his prostate or bladder, so this will be his third cancer. The 9 lymph nodes all tested positive for cancer. The tumor was 9 cm. He had labs drawn today. He will have a CT scan on the 31st of his chest to check the remaining lymph nodes in his abs and lungs. The doctor is requesting further testing on the tumor to determine the exact kind of treatment. He will have at least 6 months of chemo. He'll have to have a port or he'll take it orally, it all depends on his kidney function (lab results from today). She is putting him back on a blood thinner because cancer and blood clots go hand in hand (but have to wait on kidney results). He has to wait 3 months before colonoscopy to allow for some healing. As far as prognosis, it can be curable, but she said she would know more after she got more information back on the tumor."

At this point, Dad had lost almost 30 pounds.

July 28, 2019, Dad was showing signs of swelling and was having difficulties with his ileostomy bag. Mom took him back to the emergency room. After tests and scans, he was admitted and another surgery scheduled for the following day to have a drain placed. The tests indicated an infection which was causing swelling, resulting in the difficulties with the ileostomy. The procedure was completed.

August 1, 2019, Dad was released to go home.

This month has been about healing, about gaining strength and stamina, adding back weight lost and about learning how things work now. It has been difficult. For both Mom and Dad.

Imagine a very self-made man. Independent. Never hiring someone to fix something. Always changing his own oil, fixing his own flats, installing his own cabinets, redoing his own floors, painting his own walls, etc. Imagine that same man not reliant on someone to do everything. To walk, to use the bathroom, to dress, to bath, etc. This will affect a person physically, but also mentally.

And to make matters worse, things started to happen. A flat tire, broken water heater, a dying dryer only added to the stress and frustration of things that Dad could normally take care of himself, were so far out of his reach.

What is next?

The most recent CT scan that dad had in the ER showed enlarged lymph nodes in the abdomen. It is unknown whether it's due to the infection or cancer but doctors are leaning that it is due to the infection. If Dad's wound continues to heal well, chemo will begin Aug. 27. He will have it once every two weeks for six months. He will have a combination of four chemo drugs (one will begin in approx October, depending on if his wound is fully healed). He'll have labs every Monday prior to chemo, then he'll go in Tuesday and get an infusion of two drugs at the office that will take approx 2 hours, and then go home with one for two days in his port. He's scheduled to have a port placed Aug. 26. Dad is scheduled for genetic testing in October since this is his third cancer. We'd like to know if it's hereditary. The doctor said she can't put out a prognosis right now.

Wanting to help?

Please see the page above "How to Help" for ways to help and support Dad (and Mom) through this journey!