Steven’s Story

Site created on November 13, 2023


On October 13, 2023, I took Steve in for a routine colonoscopy. When the staff called me back to tell me his procedure was done, I walked into Steve's room and he said, "They found something. It's cancer." And the doctor walked in at that moment to basically repeat those very words. The doctor called and was able to secure an immediate appointment in radiology for a CT scan that would allow him to learn whether or not the tumor had spread and approximately what stage cancer it was. So Steve got dressed and we went to the radiology department, a little stunned, a little disbelieving, and very worried. About an hour after we returned home, the doctor called to share results of the CT scan and it was a good news bad news situation: good news- the cancer was not in the liver, the bad news- it looked like it spread to some of the lymph nodes making it a stage 2 or 3 colon cancer. He made referrals to the Colo-rectal surgeon, an Oncologist, and made an appointment for a MRI. We were to wait to be called to schedule all the appointments,


The MRI was scheduled the following Tuesday and confirmed a small tumor and 4-6 affected lymph nodes making this a stage 3 rectal cancer. 


The first doctor's visit was with the surgeon who explained where the tumor was and what surgery would be like. He also explained that surgery would be the last of the three treatments. Cancer treatment for this type of cancer has evolved and become more successful if they work on shrinking the tumor and affected areas with radiation and chemotherapy first and use surgery later in the treatment cycle. So he gave us lots of information and education and said he'd see us again in about six months. 


The second doctor's visit was to the oncologist, who explained the two different forms of chemotherapy Steve will need during treatment. One will be a pill form taking simultaneously with radiation treatment. The second is infusion chemotherapy.  The pills will be taken two times a day for the duration of Steve's radiation treatments. The IV chemo treatments, we think, will begin about a month after radiation treatment is complete and will consist of a 48 hour infusion, every two weeks, for 12 cycles. That's about 6 months if you do the math and all goes well with no complications. There are going to be difficult side effects including neuropathy in hands and feet, extreme sensitivity to cold, and the usual nausea, hair loss, and fatigue. 


The third doctor's visit was to the radiation oncologist who explained how radiation will work. Steve will have radiation treatments 5 days a week for 15 minutes a day for a total of 28 sessions, or about 5 and half weeks. He gets a break on holidays and weekends. On the days he has radiation, he will also be taking the pill form of chemotherapy drugs. He has had a radiation simulation appointment already to prepare for his treatment program. During this appointment, they used a CT scan to locate the tumor and mark his body with targets so they know where to aim the radiation beams. They also built a mold of his lower body to keep everything nice and still during the treatment. 


On Halloween morning I took Steve in for outpatient surgery to implant a Chemo Port so that when the infusions start they can deliver them without compromising his veins. The port is in his chest, near his collar bone and after a few days of discomfort is mostly not a bother any more- unless the dog stands on it. Then it hurts a little. 


The first round of treatment, the combination of radiation and chemotherapy begins on November 20, just 38 days after the original diagnosis. Those 38 days have been both the blink of an eye and lifetime of waiting and knowing there is cancer in Steve's body. We have used them to prepare as best we can for what we think is coming. And we have used them to just be with this new reality and to share the news with our family and friends. Never once has Steve had a symptom, a concern, or a hint that there was a problem. 


We are facing this challenge with a great deal of confidence that Steve's cancer will be cured. Every doctor believes this is possible. Steve's stoicism is serving him well, but he has had a few "woe is me" days. I am a lot less stoic...but I pray a lot more than Steve does so we cover a lot ground as a couple. And we have each other- we lean in and lean on each other and find ways to balance each other's weak moments. And do not underestimate the power of a good poop joke. 


One of my first reflections once the news really settled in was how profoundly grateful I felt already on this journey. We are so incredibly resourced...we have families who love us and would do anything they could for us. We have friends who will come and help if asked. We have insurance. We have a safe home. We have the care and support of employers who are authentically concerned for our health. We have neighbors who will walk the dog, clear the snow and help with anything..."just ask." We've already had a crew of Berns family relatives help with the fall yard work and we are so grateful. We have a path to a cure. We have access to talented medical professionals who care about the wellbeing of their patients and their families. So it's that gratitude that I'm going to try to hang on to during what I know is going to be a difficult road to come. 


Your presence, prayers, support, encouragement, thoughts, notes, calls, texts, and any other ways you want to connect are most welcome. Steve and I are especially grateful for all of the people who we know and care about. Thank you for the love, support and encouragement. It takes a village to raise a child. It also take a village to cure cancer. Thanks for living in our village.

Newest Update

Journal entry by Valerie Jones

Hello family and friends! Steve and I are sitting on the couch watching Brewers Baseball (they are winning tonight!) and reflecting on the final hours of what is likely to be Steve’s final at home infusion, bringing to completion his 8th and hopefully final chemotherapy treatment. We’ve shared a couple of photos so you all can see what his home infusion experience looks like. He’s been a good sport about having his little chemo ball around his waist for 46 hours every two weeks but I don’t think he’s too sad that this is the last one. 

Steve continues to experience side effects from chemo. He continues to have extreme sensitivity to cold. He is very tired. His taste buds are dead and we are at the “everything tastes like mashed potatoes” phase (and not the buttery, creamy good kind). He has finally experienced enough hair loss that he has cut his hair very, very short, and thus is cold and wears a lot of hats. And he has developed some neuropathy in his fingers and toes. This appears to be relatively mild and it remains to be seen if it is permanent or not. For many cancer patients it is. Thankfully his weight has remained steady throughout all treatment so far. We are grateful for this and credit Mom’s cookies and bars, my Saint Ben’s colleagues’ provided dinners and Steve’s determination to keep eating even when he didn’t feel like it. 

At yesterday’s doctor’s appointment before treatment started we discussed all the next steps because even though chemotherapy is complete treatment is not. Next week on May 8 we will meet with the surgeon to learn all about the surgical phase of Steve’s treatment. We will learn if and when the next MRI and CT scans will take place so we can know how effective the chemotherapy was at continuing to shrink the tumor and reduce the cancer in Steve’s lymph nodes. And we will likely schedule the two surgeries needed to remove the tumor and affected lymph nodes and then resect Steve’s colon, or as I like to say, Humpty Dumpty him back together again. But I am speculating at this point and will share more once we have met with the surgeon and have factual information to share. So more to come next week…

In the meantime, we continue to feel and appreciate all your support, encouragement, and love. Thank you for taking such good care of us! Love, Steve and Valerie


Patients and caregivers love hearing from you; add a comment to show your support.
Help Steven Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Steven's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top