Many people have asked me to write my story and share it with others. It has taken me a while to do so for many reasons, but mostly because I really didn’t know how to tell my story. See, for me, having breast cancer is best described by an old Texas Aggie motto about traditions in Aggieland: From the outside looking in, you can’t understand it. And from the inside looking out, you can’t explain it. So here goes nothing; thanks for joining my journey.
It was November of 2018. My wife, Sarah, and I had just recently finished rebuilding our home after losing it to Hurricane Harvey. We had begun taking the required orientation and training classes to become foster and adoptive parents. We had our lives together and things were really going well for us. While undressing one night, my thumb brushed against my right nipple as I removed my shirt and seemed to “bump” into something. Feeling my breast, I discovered a lump that felt to be the size of a cherry pit. It was painless but bizarre. I brought it to my wife’s attention and asked what she thought about it. Her response was simple, “I think it feels like something you should have looked at by your doctor.” Knowing all too well that I wouldn’t hear the end of it until I scheduled an appointment, I did so the next morning and went to see my primary care doctor. He examined it and said it was likely a benign gynecomastia or a small cyst of some type. To confirm, we scheduled my first mammogram. Talk about feeling awkward. Here I am, a 46-year-old man walking into a women’s imaging center. I had to chuckle while signing in and the receptionist asked if I was signing in for my wife. At that point in my life, it was a logical question. After confirming that indeed it was I who was the patient, I was brought into the exam room and experienced the joyous torture that is a mammogram. As I was putting my shirt on, the radiologist stepped in and said that it was simply a gynecomastia and nothing to be worried about; in fact, it even had a twin on the left side. She stated that unless it was just really bothering me, or I wanted it gone for cosmetic reasons that there was really no reason to give it any further attention or concern. She assured me that it was not cancer and nothing to worry about unless it got bigger, changed shape, or became painful. If any of those things were to happen, I should follow up with my doctor again for further evaluation. She also assured me that those things were “highly unlikely” for an otherwise healthy man. Little did she know that we have a running joke in our family that If it’s going to happen to anyone, it’s going to happen to us.
Life goes on and it did for us, as well. By 2020, we were blessed and fortunate to have become the foster parents to a beautiful little girl who was about to turn 2 and a spirited young man who had just turned 11. I had been promoted and was working for an amazing company, my oldest biological son was working with me, and Sarah had become a full time Stay at Home Mommy. After celebrating Valentine’s Day with our new little family of five, I asked my wife to look at my breast again. Maybe I was being paranoid, but it seemed like the mystery lump was getting larger and my breast felt hot to the touch. She obliged and once again strongly recommended that I go see the doctor. I scheduled an appointment for a couple weeks later and by the time I saw my doctor that last week of February, there was no doubt that my gynecomastia had gotten larger, had changed shape, and become extremely painful and hot to the touch. I’ll never forget the look on my doctor’s face when he entered the room and looked at my shirtless chest and said out loud, “Oh my. That’s not good at all” as he began to examine my inverted nipple and then started tracing a path into my arm pit. He had me get dressed while he excused himself to make a couple phone calls to some colleagues before he discussed his findings and impressions with me. When he returned, he informed me that he has scheduled another mammogram and an ultrasound for the following Thursday. He told me that after those were done, the radiologist would most likely want to schedule a needle biopsy of the mass that was in my breast. He then went on to discuss the presenting signs and symptoms of breast cancer. He explained that breast cancer was a possibility but very rare in men. In fact, he tried to set my mind at ease by letting me know that less than 1% of breast cancers occurred in men and it was highly unlikely in an otherwise healthy man. But hey, If it’s going to happen to anyone, it’s going to happen to us.
We had already planned a family vacation for Spring Break that year and I for sure wasn’t going to let fear of the unknown disrupt our plans. Life goes on and we had things to do. I went in for the next mammogram and ultrasound. The technician doing the ultrasound bravely told me that she had never done a breast exam on a man. I let her know she’d never be able to say that again. As she finished up, she told me to stay put because she was pretty sure the radiologist would want to come in and look at a few things and have a talk with me. She was right and the radiologist (not the same from 2018) came in and introduced himself. He told me that he already had me scheduled for the following Wednesday to come back for an ultrasound guided needle biopsy and began explaining the procedure to me. I was determined that the following Wednesday was out of the question because I had plans and life goes on. Then he told me in clear terms that the purpose of the biopsy was to confirm that I had cancer.
Life goes on and after careful planning my wife and I figured out how we could still do our vacation and I could make it to my biopsy appointment. We made it happen and upon rejoining my family, I asked my wife if she had heard about all the people rushing out to by toilet paper because of some respiratory virus that was going around. We laughed about how paranoid people behave and then loaded the kids to go eat at a local restaurant. While eating we watched the news and exchanged a few text messages with friends and family and decided it would be best to pack up and head home the next day and go on a search for toilet paper. Friday morning, my wife and I were enjoying the luxury of sleeping in and laying in bed when then phone rang. It was the radiologist and he asked if I was with my wife or alone. He asked me if I wanted to know the results over the phone or if I preferred to come to his office. I was already sure that I knew what he had to say so I told him to go ahead as I put my phone on speaker. At 8:40 am on Friday, March 13, 2020, my world fell apart due to a personal health crisis. Little did I know that on Monday the 16th, everyone else’s world would fall apart due to a global health crisis.
Shortly after hanging up from that phone call, our children made their way to our room and crawled into bed with us. My son was old enough and smart enough to understand what was going on. He asked what the doctor had said, and I told him. He asked how bad it was and I told him I didn’t know for sure but that it was for sure cancer and it had spread into my lymph nodes. My son asked what we would do next, and I responded with what became my mantra; Life Goes On. I told my family right then and there that I had cancer, but cancer didn’t have us!
One week later, my wife attended my surgical consult with me, and we planned my modified radical mastectomy with lymph node dissection for the following week. The surgeon told us that based on the size, the spread, etc. my cancer was classified as Stage 2B but could be Stage 3 based on the findings when they did surgery. We were told that it was an estrogen receptor positive cancer. We were told that after surgery, I would need chemotherapy for several months and possibly radiation after that. We were told so much and can’t remember to this day all the details that were thrown at us in such a short visit. Things were moving fast but we were okay with that because we certainly didn’t want to be going to and from the hospital a lot with all the “COVID stuff” that was going on. That was the one and only time she would be allowed to accompany me for any visit, test, treatment, or procedure. Because of COVID, I was now on my own.
On March 26, my wife dropped me off at the front door of the hospital. Twelve hours later, a nurse rolled me out in a wheelchair and helped me into my wife’s car. Talk about the miracle of modern medicine. I just had a mastectomy as an out-patient procedure. I came home and honestly didn’t feel too bad. I had one less boob and two new balls to play with thanks to the drains that I would learn to hate. My young son quickly nicknamed me the “Uni-boober” and still calls me that to this day.
Surgery recovery was relatively easy except for my drains constantly being in the way and getting hung on anything and everything. Surprisingly, I felt better after the surgery than I had prior. I really did not realize how sick I had been while the tumors were still inside me. A week after getting my drains pulled out, I returned to work at my critical infrastructure job feeling like a million bucks. My co-workers told me how much better I looked, and I had a level of energy I had not known in a couple years. That same week I visited with my medical oncologist for the first time. She told me about the chemo plan and how I would need to have a porta-cath placed in order to be given the medications. I would be undergoing the “AC-T” treatment plan but because the “T” had more risks associated with immune system compromise we were going to do it first because COVID was spreading rapidly, and we didn’t want to take any unnecessary risks by waiting. My port was placed the following week and the week after that I began chemotherapy.
Now, I have to say that everyone’s cancer is different, and everyone’s journey is different. I was pretty sure that I was the odd exception to all the chemo horror stories I had heard because after chemo, I went to work and carried on like nothing had happened. That was Wednesday. Friday morning, I couldn’t get out of bed. I was sore, nauseous, dizzy, and had a fever. I called in, took a bunch of nausea medicine, and stayed in bed all day. The following week was an identical repeat. The third week, I asked my team to push my treatment day to Thursday so I would be sick on Saturday and not miss work. I knew that I could count the seconds from the time the Taxol started flowing until I would feel like I had been hit by a bus. After the fourth week, Taxol threw in a new treat and decided that “chemo day” was a good day to not go to work because I would instantly feel horrible for the next 24 hours and then just when I started feeling better, round two would kick in and knock me down again. Then I was blessed to have a couple of good days and start the cycle over again the next Thursday. This continued for the next three months. Along the way, I lost every hint of hair from my entire body. I lost my sense of smell and taste. I had my port clot and occlude three times. I developed mouth sores and neuropathy in my feet and fingertips. I learned the phrase “chemo-brain” and I’m still not sure when that resolves. I developed lymphedema in my right arm and had to start physical therapy to maintain a good range of motion. I underwent genetic testing to learn that I am CHEK-2 positive. I also continued working 40 hours a week (down from my usual 60) because Life Goes On.
In July, I finished my last Taxol treatment and was ready to move on to the “AC” chemo. Adriamycin is frequently referred to as “The Red Devil” and for good reason. I thought I had experienced muscle soreness and nausea during the Taxol. Then the Devil showed up and said, “hold my beer”! Fortunately, Ativan and Zofran were a part of my pre-treatment loading. Without them, I really don’t know that I would have consented to additional treatments. This continued every other week until September 17. During the Red Devil treatments, my oncologist informed me that although we had accomplished a successful surgery and chemo was working well, I would also need to undergo radiation treatments to ensure there was no potential for cancer returning. The good news was that I would have about a month off to recover from chemo before starting radiation.
Radiation started in September as a daily event Monday through Friday. Radiation was really a cake walk for me with the only negative effect being the severe burns on my skin. Thankfully I had an amazing radiation team that provided me with lots of various cooling gels, bandages, medications, and other items to make the burns more tolerable. I knew the end was in sight and I was getting closer to finishing my treatment plan. More importantly, my favorite little red head that we had been fostering had agreed to become our forever son and we had started the adoption proceedings while fighting off cancer and dodging COVID because Life Goes On.
On November 17, our family walked into a courtroom and after reading through all the legal stuff the judge congratulated us and said, “It’s a boy”. Even though he was 12 years old, it was just as exciting as seeing him born. Three days later, I rang the bell. I was finished. It was time to get back to normal because Life Goes On.
A few follow up visits, some lab work, and the general routine stuff took place and on January 8, 2021, I had my first MRI after treatment. That afternoon, the radiologist called me and said the best thing I could have hoped for, “Mr. Riggs, there is No Evidence of Disease”. Life Goes On.
From diagnosis to NED was 302 days. Strictly from curiosity, I sat and counted them and during those 302 days, I had 216 appointments, visits, procedures, treatments, tests, etc. Cancer is a full-time job, and it is not for the faint of heart. I will be taking Tamoxifen for at least five years, and I will continue getting scans every 6 months during that time. I was scheduled to have a risk reduction simple mastectomy of my left breast, but it was postponed due to COVID. I will reschedule when the world is a little safer.
My journey was not easy, but I know that it could have been much worse. If you are reading this because you are newly diagnosed with breast cancer (or any other cancer) please know that you are not alone. The key things I learned on my journey are these: No One Fights Alone, You Are Not The Exception, Life Goes On. Keep up your fight and keep living life to the fullest extent you possibly can. Your story will become someone’s inspiration. If you have read this and you have not been diagnosed with cancer, please go check your breasts!