I am a caregiver to my wonderful husband, Bryan. Our journey began at a rapid pace after a trip to the ER and a CT scan revealed he had stage 3 colon cancer, that was in 2022, we have been battling this terrible disease ever since. He is now considered a stage 4 since he has metastatic spread to his urinary tract and rectum. Looking back all the tell tale signs were there, the weight loss, the abdominal pain, the blood in his stool. All were happening, and I am not sure if we both were in denial or just not thinking straight.
I look back on that time now and feel so frustrated that we didn’t push more for answers earlier, then it potentially wouldn’t have spread to his lymph nodes. But hindsight is as they say 20/20. He checked into the hospital ER on a Friday, and by Sunday morning he was in surgery to remove the extra large mass that was at this point completely blocking his lower intestines and about to split thru his intestine. He spent another 3 days in hospital to recover from that surgery. It took about 3-4 weeks after the surgery to get in to see the oncologist. Those first few weeks and months were a blur; everything happened quickly and he was told he would need Chemotherapy to eliminate what cancer might have been missed.
As the caregiver I immediately felt the shift of the difference in what we were simultaneously experiencing. My perception and emotions of what was happening was different and it was isolating immediately. I felt very heavy and like I was literally carrying the weight of the world on my shoulders, but I didn’t have time to stop and process those emotions. I had to be strong for my husband and our young daughter, as well as support our grown kids in what seemed like a hopeless situation. I also had to continue to work, because I carry our insurance, so in the beginning I was overwhelmed and felt very alone. I tried to share and lean into close friendships, but I quickly learned that unless they had a personal experience with cancer none of them truly understood, and that left me feeling even more alone.
Fast forward a year and we were still in the battle, but came to learn that he now had a tumor on his ureter duct between his bladder and kidneys, this would require a higher level of care and specialized surgeon. So we sought out one of the top cancer specialist hospitals. It was approximately about a 9 hour drive from our home, and a trip that we took multiple times for scans, consults, and labs. Finally in January 2024 he was admitted to have the ureter tumor removed, which would also result in his urinary tract being manipulated to make up for the tumor to be eradicated. We spent close to a week at the hospital, and felt incredibly hopeful upon going home. He had to continue to be on chemo and at this point was about to begin his 3rd round.
A scan that was done 3 months later left us dumbfounded, the tumor had returned but he also now had peritoneal metastatic spread. This would again require a skilled surgeon to perform this new surgery, which is called CRS/HIPEC, it’s a procedure where they go in and scrape the peritoneum to pick up any and all cancer cells, followed by a liquid chemo wash that was put in his abdomen and washed back and forth for 90 minutes. It’s like getting an intense chemo treatment in a short time. The surgeon also “cleaned up” a mess that the previous surgeon had carelessly left behind and this resulted in his entire lower colon and rectum to be removed, He came out of surgery with a new accessory, an ileostomy. We were warned it was possible, so it was not a total shock. This was in October 2024. Fast forward to us now, and we are what I would qualify as “settled” into our new lives, which now revolves around chemo every other week and scans every two months to closely monitor growth and spread. At his most recent scan he was considered “Stable”, the cancer was still present, but it had not grown or spread to any other new areas.
As I look back on the last three years, there are a few things I wish I had known in the beginning. One being only concern yourself with things you can control, everything else you must put aside and just let happen. I tried so hard to control so much around me, emotions, outcomes, anticipation of grief, staying positive. As alone as I felt, I still had to be there for my husband. Who by the way, decided very early on that he was going to stay positive no matter what came our way, I drew from his strength and tried to model my own emotions around his, and he is to this day still the most positive person I know. The biggest mistake I made, was faking happiness and holding things in. I was scared, and I sometimes still am! The difference is now I choose to stay positive and only allow things I can control like my own reactions. We have very honest and open communication about life, death, fear and anxiety, which was a challenge in itself, it took honesty and bravery to initiate these tough conversations.
I also did myself the biggest favor by seeking to find a good therapist that helped me visualize my strength and supported my big feelings by validating and listening. If I could talk to another caregiver early on in this journey, I would certainly advise them to reach out and find local or online support groups, that was one thing that kept me sane, was joining more than a few cancer support groups one in person and the others were online. Also knowing and fully accepting of the control we all want to have during this just isn’t reasonable.
Life has changed dramatically for us, but its also had some positives along the way, our marriage is stronger than it ever has been, and our general outlook on life, death, and our faith has changed in big ways. Each day is a gift and we treat it as so. Our hopes for the future is that he will eventually be cancer free, and we can eventually get off the roller coaster. Until then, we will happily continue on in this life we are living, thankful for the opportunity to have one more day together and with our family. Our biggest blessing has been our faith, it has sustained us at every turn and valley the last 3 years.
About the Author: Terri lives in the south as a mother to 4 kids, working full time and caring for her husband as he battles Stage 4 colon cancer. She spends her free time with her family, or crafting, decorating, and spending time outdoors.
