[Full disclosure – this is a long one. You may want to break it down into bite-size pieces]
One year ago today I received a call from Dr. Shapiro telling me that the tumor he’d found two days prior was, in fact, cancerous. I was at school, it was lunchtime, and I was texting my brother, Phillip, telling him that I was expecting to hear from the doctor at some point soon. Up until that point, I was really holding out hope and belief that the biopsy would come back as benign. My phone rang.
“This is the doctor. I’ll talk to you later,” I texted Phillip.
“Hi Mr. Benefield, this is Dr. Shapiro, I am sorry to tell you, but the biopsy came back positive. It’s cancerous,” he told me in a gentle voice.
I think that washed over me because when I told him how much I appreciated him taking the time to call me he repeated, “I just want to make sure you heard me, you have cancer.” I thanked him again and told him that I hoped he had a good day.
I texted Phillip, “It’s cancer” and then the bottom dropped out of my world.
It was a full-on panic attack. Shaking uncontrollably and crying I looked at my teammates, I don’t remember if I spoke or if it was just obvious from my reaction what the doctor had told me. Immediately, two of them took my arms and lead me back to my classroom. I sat at my desk hyperventilating as I tried to wrap my head around what was happening. It was decided that two of them would get me home; one driving me and another taking my car. After that decision was made, another teammate asked if she could pray for me. We held hands and she offered a quick, heartfelt prayer, and without any exaggeration or hyperbole, I calmed down a little. We were able to get out of the school without my students seeing me. I am so grateful that they were at lunch and recess during this time.
On the drive to my house, we made some small talk. I was trying to decide whether to call or text Anna the news, I really wasn’t sure what to do. I ended up calling her, telling her that I was coming home and that I’d be there soon. I don’t remember a lot of the car ride. When we got to the house, they walked me to the door. This was the first time Anna had met one (what a horrible situation for an initial introduction!). I thanked them for getting me out of school and home and then Anna and I talked. She told me that she knew that I had the tendency to hear, but not listen when doctors are giving news just like my parents did.
“I can pretend to do that if you want, but I cannot just do that,” she said, “I can’t not hear what is being said.”
“No! I need you to be the one to hear that. I need your voice of reality and focus,” I told her. And that is how we started this process.
After much prompting from Anna, as well as one of my teammates, I contacted Dr. Ethan Tolbert, a GI oncologist whose daughters are the same age as ours and were schoolmates at Fernbank, and whose son was a student at Trinity for his 5th and 6th-grade years. I felt uncomfortable contacting him out of the blue, but I texted him, “It seems like your specialty and my diagnosis have some things in common.” Within 15 minutes he called me on the phone, asked me what was going on, and then told me to come in the following Thursday at noon. Having a doctor who knew me, knew me as Thomas, as Mr. B, had an incredibly strong effect on me.
I decided early on that I was going to maintain a positive attitude throughout the process, This really started with Dr. Tolbert. He told me in our first meeting, as I’ve mentioned earlier, “We are treating this to cure you. When we are done, you are going to be cancer free.” That set the bar for me. My family, my friends, my co-workers, and honestly, almost everyone helped me maintain that attitude. Keep moving forward. That was my mantra. My friend Dean White, who coincidentally I saw and spoke to in passing two days ago, took my sketch of those words with the arrow (branding, right?) and turned it into the cool design that it is now. My entire medical team, the receptionists, the nurses, and the doctors have been positive, friendly, and caring throughout my treatment.
After I was diagnosed but before my treatment started, Anna and I had some serious talks about how we were going to handle this. If you know Anna then you know she is a planner, and that is what she started doing. She searched out podcasts on cancer treatment, she researched different supplements that work with the chemotherapy meds that I would be on, she found articles on the correlation between certain types of food and colorectal cancer; both those that can cause it, as well as those that can prevent it. We had serious talks about my diet. Several serious talks about it. If you have known me for a while, you know that I have had pretty much the same diet since I was a kid. What that means is that my diet was high in processed foods. I enjoy fruits and vegetables, I really do, but things that come in shiny packages out of the middle sections of the grocery store have always been a big staple. I threw a few temper tantrums about these changes. So much so that early on Anna looked at me and said, “You know, it says A LOT that you’re more upset about having to change your diet than you are about having cancer.” She was right. So, change happened.
During chemo, from December through March, I cut out almost as many processed foods as I could, any foods with nitrates, reduced as much added sugar as I could (I found monk fruit sweetener for my coffee), and almost all red meat. We ate A LOT of chicken and fish during that time! I cut down the number of foods that I was eating made with seed oils, and to be honest, that’s almost EVERYTHING. Anna found some chips made with avocado instead of other seeds oils. I started eating more berries regularly, added almonds, walnuts, and pecans, and began eating avocado (I’d never had it before). I added more gluten-free items to my diet. I tried smoothies to get some extra protein but was not a big fan so it was not a huge part of my diet. I have come to realize that the changes I made were beneficial to me as well as to my family; a healthier me is a happier me is a better husband and dad. I have added some things back in moderation, but I definitely have a much healthier diet now than I did pre-diagnosis.
I have no doubts that my dietary changes helped out with how my body responded to my treatments, and that includes the supplements I have been taking; turmeric, milk thistle, spirulina, quercetin, vitamin D, and turkey tail. Anna found some articles that showed that those worked well in fighting colorectal cancer. My doctors were not very familiar with them at all, but they did not tell me to stop taking any of them except the turmeric before my liver surgery because it acts as a blood thinner.
When I started radiaion/chemo back in June, I went on a low-gas diet ( so beans, broccoli, eggs, corn, apples, and lots of wheat-based foods were out for that period of time. Once I was through with that treatment, I slowly added back those foods. I made the mistake of eating a Mexican dish with a regular-sized serving of black beans and was doubled over in pain the next day with gas. I limited myself to one beer a month during chemo. Before I had the tumor on my liver removed I stopped drinking alcohol altogether and did not have any until I had finished radiation/chemo. In addition to my dietary changes
I believe that the routines I adopted during my treatment also played a vital role in the way my body responded. Every morning, I read from a few different books gifted to me. I read, ponder, underline, and sometimes re-read. I read over my list of people, places, and things that I am grateful for. The list of people I am grateful for grew and continues to grow. I read over my affirmations, starting with, “I am staying positive and moving forward.” My affirmations have changed over this time, some no longer apply and others are things I started noticing that I needed to pay more attention to. I have a list of things that I need to remember ranging from “It matters how I treat people” to “respond, not react.” I’ve added more as time has gone on. My former supervisor and a dear friend suggested to me that each day I write down a gift that happened during the day; big, small, profound, or simple. It encourages me to look for the good; the sunrise, a mom and child holding hands on a walk, dinner with a friend, and a good nap. I started that before my treatments began back in December, and except for a period of time in January and February, every day I write down these gifts. I tried meditation, but it never really clicked with me. I had the app, Headspace, with a very calming Australian man leading me on that journey. I was never able to fully submerse myself in it, but I definitely learned some calming and centering strategies that I am still using. During radiation, I would silently repeat the mantra, “death to the cancer, strength to my cells and body” throughout the treatment sessions. Recently, I have adopted an evening ritual as well. I’ve added, the questions, “What went well?” and “What could I do better?” to my end-of-day ritual as a way to reflect. I have been doing a lot of reflecting over the course of the last year.
I absolutely believe that the prayers offered, good wishes, thoughts, and vibes sent to me from family, friends, and strangers also played a major role in how my body has responded. I know there are as many viewpoints on this as there are people in the world, but I am convinced that all of this helped me. My thoughts on prayer are a whole other long post, but I believe deeply that they helped me. This is a tough subject to talk about, and one that has caused, and often still causes me emotional, mental, and spiritual pain. I’ve used the phrase, “how my body responded” many times. My body responded in ways that I never could have imagined, and I am beyond grateful. My side effects were minimal and really not as horrible as I know they can be. At the same time, not everyone’s body does respond the way mine has, and at least two friends did not survive their fight with cancer while I was going through treatment. I can’t explain or understand that and I really, really wish I could. There’s no doubt in my mind that they also had family, friends, and strangers praying for them, and know for certain that they were maintaining a positive attitude and outlook. It’s difficult for me to talk about without tearing up because to the core of my being, I don’t understand, and I know no one else does either…
I can’t begin to adequately put into words the amount of gratitude that I have for so many people. Family members, friends, co-workers, former students, their families, clergy, believers, and nonbelievers have reached out to me and my family over the last year providing us with meals, letters, cards, blankets, and books. I have had so many conversations and hugs and tears with so many people. I have met some new incredible people as well. Some who have gone through their own battle with rectal cancer and one new friend who was going through treatment at the same time. He and I share a very special bond and friendship due to this ordeal. Every morning, I read the names of people that I am grateful for family, friends, teammates, coworkers, doctors, nurses, techs, clergy, and more, and every morning I am filled with love reading those names.
All of this leads me to what I posted last time –
Scar tissue is what my surgeon and attending doc saw today during my colonoscopy. SCAR TISSUE. He is so confident that it is scar tissue that when I asked him if he took a biopsy, he said that they did not feel it was necessary and would have caused unnecessary bleeding. I will go in for another colonoscopy and MRI in two to three months. He did say that at that time the swelling and scarring (from radiation) should be greatly reduced with the caveat that if it still looks the same he is going to recommend having surgery to remove it to be completely certain. To keep my distance-swimming analogy from the start of this, my doctor just rang the bell letting me know I was on my final lap.
What now? My MRI is in two weeks followed by another colonoscopy (right after Thanksgiving for crying out loud) If I have to have surgery then so be it, I will accept that with gratitude because it so easily could have gone so differently. If the scans are clear then I will go on a cycle of every three months for a year and as long as those stay clear then I’ll start going every six months. Ultimately, I plan on finding ways to help others dealing with cancer. There are many ways that I can help, so I will be looking into those and trying to find the one that best fits my strengths.
If you’ve read this far, thank you. Thank you for sticking with me. There are so many people that I wanted to name in this, but I didn’t want to leave anyone out by mistake, so mostly people are referred to as friends or coworkers. They know who they are, how much I love them, and how much they mean to me.