It’s hard to believe that it’s been 3 years since this all started, but here I am, still alive to tell my story, which I hope helps other men and all people. I’m sure I’ll repeat this, but if you suspect anything anywhere in or on your body, please go get it checked out.
Considering what my full diagnosis was, I’m very lucky to have caught it early. I was told that most men present breast cancer at Stage 2, 3 & 4, with either pain or discharge at the nipple and a bigger tumor.
It was late October 2022. I was in Northern California. I was asked to share my experience, strength, and hope at a CMA (crystal meth) recovery retreat. I ended up being the Saturday main speaker, and that morning, while I was showering, I noticed what I thought was an ingrown hair near my nipple. I’m a hairy guy. So, ingrown hairs were almost a game of popping and needling free over many years. This one was stubborn, and the lights were dim in the cabins, and no mirrors, and I figured I’d just handle it when I got back home to Florida.
A few weeks passed, and I was going to see my primary care doc for my annual physical when I remembered Oh yeah, that zit, which I thought by now would be gone or ready to pop. Same results, we could not pop it. Doc said, “You’re a guy. Let’s scan it just to confirm it’s a cyst. You can have it removed if you want. Don’t worry.”
That first scan happened in February 2023, and then the doc said, “Hey, let’s get you to a mammogram,” and I said Uh, what, ok and by the way, my hernia is starting to pop out a bit. He asked if that hurt, and I said no, just having to wear a belt now to keep it in. I should have recognized his prioritizing of things, and then, of course, he came back around and said, “Out of an abundance of caution, let’s do a biopsy.”
I had the biopsy done on May 3, 2023. The day after, I called to make an appointment to see my doc again to snag that referral for the hernia repair. When I went in on May 10th, he asked why I was there and I said that you said that when the hernia started hurting….and then he said but do you want to talk about your biopsy to which I replied uh no, not when you ask it like that which already communicated everything I never wanted to hear or thought I would ever hear. Plus, I was alone. My husband was at work.
My doc said he was surprised and confused that I was there because he received the biopsy results 10 minutes before I came in. My entire world froze. I was littered with the worst scenarios of fear, pain, and the end of my life. He said that I would not leave his office until they had me scheduled with an oncologist.
I can’t tell you what happened over the next hour and a half. I lost that time and just remember lots of crying and leaving with my oncologist referral, which was not for 2 weeks. I got into my car and, as if there was further room to break down and cry more, I did. It took me 15 minutes to call my husband (my saint and angel) Joe, and it took another 10 minutes to stop crying so hard to be able to speak. We’ve been together a long time, 26+ years now, and I’ll never forget the look on his face (I Face-timed that call), and in that moment, I completely felt and understood the love he had for me. He asked if I could drive home. I said yes, and he left work immediately and met me at home, and we just held each other and cried.
They told us to stay off Google. We googled. We discussed who to call and who not to call. For that day, I called my sponsor and one family member. I remember waking up the next morning and putting some coffee on and not taking a sip until that cup had gone cold. I just sat for days, frozen, not understanding, and also really not knowing the wall of information that was coming our way and the tsunami of healthcare advocacy and commitment to appointments and tests that were headed my way, including lots of side effects and time in bed. I’m a very active guy, have been my whole life. An abrupt change in direction was coming.
There were lots of tests and scans prior to the first oncologist meeting. Then came that first meeting, and we showed up with pen and paper. I had a friend who had been through breast cancer twice, and she gave me lots of guidance. First came my diagnosis. Invasive ductal carcinoma, Stage 1, Grade 2 HER2+++. I didn’t really understand what much of this meant, even though it was explained to us and we both wrote it down. By the end of that initial meeting, I was instructed to have at least my first chemo infusion and maybe 2 before my next follow-up, as my treatment plan was 12 chemo treatments, weekly. They said the side effects could be cumulative and that lovely doctor supplemental language, “but everyone is different”.
That was a hard wall to run into. I arrived at that appointment thinking I would be told that they were just going to cut the tumor out. After all, it was only 9mm. I was also instructed to get a port put in, in case I needed subsequent infusions, after the mastectomy. Huh. What?
OK, so first, the gravity of being told of a chemo plan was paralyzing. Also, there are so many looking back moments. I should have recognized when my primary care went from scan to mammogram to biopsy that concerns were rising. Then, I should have realized that the Kadcyla, the subsequent chemo after surgery, was also probably always going to happen when they wanted a port put in.
So, there we were. 12 weeks of Taxol. First 2 treatments, with no port, were no big deal, and I didn’t really have any side effects. Even though I could still work and go to the gym regularly. I just had some hiccups and hot flashes. Then the port went in, and whammo, it all changed, and side effects came in like a Mack truck. The top of my head broke out, crazy nausea, mouth sores, painful constipation, cracked/painful nails, bloody boogers in my nose every morning, loss of taste, and then the depletion of energy except on treatment days.
All those premeds. Taking the Benadryl was like being on X and K again. I’m clean 24+ years now, except for prescribed drugs and the lovely steroid. We had to laugh because sometimes I would get home and just crash for a few hours, and other times not, but by 6 pm on treatment days.
There I was, a speedy steroidal mess in either Zumba class or cardio kickboxing. Everyone thought I was a lunatic. I told them that it was a pre-existing condition. I still wouldn’t sleep that night, maybe 1-2 hours. By day 2 or 3, the steroid would wear off, and painful cramps would take its place. Chemo brain started to set in and got worse. Working was no longer possible. My world got small. I didn’t want to be around people because that meant I would have to try and keep track of conversations, which I could not do very well. In July of 2023, my father-in-law passed away. That was tough because I had to try and find some piece of me to be present for my husband. I did the best I could.
Our experience at the infusion center at Broward Health was amazing. I felt cared for and very well looked after. My husband sat through every infusion, these first 12 and the subsequent 14. He was there when I woke up from every surgery, port in, mastectomy, hernia surgeries 1 & 2, and port out.
The mastectomy was hard to navigate. It took me 3 weeks to even look at myself in the mirror. I was embarrassed, ashamed, felt dirty, almost like maybe I deserved it. Thank God for my strong recovery program and great sponsor to help me through and turn these difficult times into a recognition of intimacy and knowledge of self-esteem, courage, and perseverance. Cancer taught me how to show up for myself, even when I didn’t want to, and how to communicate honestly about how I was feeling, physically and emotionally.
In January 2024, I started Tamoxifen. The first 6 months were brutal with headaches, diarrhea, cramps, and fatigue. I didn’t just nap, I went into what felt like a coma to wake up and be unable to move for 15-20 minutes.
Then came 14 infusions of Kadcyla, which I called Godzilla because I imagined a fire roaring through my body, burning and killing all that was harming me, and that it was being eradicated. The side effects were fewer in most aspects and different, except one was worse. What was worse? Nausea. We just couldn’t get it under control. They had me on Zofran and Compazine, alternating every 3 hours, and yet, there I was nauseous and 18 pounds heavier. My vanity was pissed. I thought I could lose a few pounds. I was barely eating. The energy cycles during Kadcyla, which increase the percentage of non-recurrence and no spread, were fairly consistent. Treatment days were OK, but within 24-48 hours max, I was in bed for 3-5 days, and then clawed my way back to some kind of normalcy in 3-5 days and had a week of somewhat OK until treatments 11, 12, 13 & 14. I really felt like caca up until a day or 2 before the next treatment.
I tried to have a life, get to some recovery meetings, exercise, take a small trip here and there, and watch lots of tennis. I think I felt like the ball was being whacked in many ways.
On September 18, 2024. I was declared in full remission. The port came out, and in November we went on a cruise. I had booked it almost a year prior, thinking either it’s a celebration cruise or some final getaway. We boarded, and there were 3 couples all wearing pink hats and sunglasses, and I asked what was happening. They said our friend here just got declared in full remission from breast cancer, and we’re here to celebrate. I burst into tears, and they gave me one of their pairs of glasses and a bracelet. I still have them.
Oh, I wanted to mention money. I had an accountant, who was also a neighbor and a very close friend in San Francisco, starting in 1992. When I called him in June of 2023 to tell him what was going on, he informed us that he was retiring and inquired what we were doing for money, and I was very honest when I said, Right now, we are just freaking out and panicking. Then, as he did for 30 years, he said, “Go to the IRS website and look up 72T and call me back with any questions,” because I have always had questions about his suggestions over the years.
I am hoping this bit helps folks who might read this and have this tool available. It’s for those who have IRA accounts. This program allows one to withdraw early without penalties or interest. There are lots of rules to adhere to, but it has worked for us (so far). I’ve got 3 more years in the plan.
Life still has its scary moments. Every time I feel something new or different, my first thoughts are not pleasant, and I have to talk myself off the ledge. My follow-ups were all great until they stopped.
I’m a beneficiary of Florida Blue and Broward Health, which have not reached a contract negotiation agreement as of July 1. So, all of my one-year exams and follow-ups got cancelled. Half my brain is like, Oooh, a break from all the appointments. The other half says but what if???
Cancer has changed how I look at myself, what I eat, who I spend time with, and who I don’t. I’m 57. So, I get that time is ticking and life is precious. A lot of my time is spent trying to find new ways to be a better husband, as I feel I am in debt for the years that Joe put his life on hold to be there for me. That helps me with discernment. It also allows me to empathize with others and the struggles they share and the hidden ones they keep secret.
To get current, this year is the first time I’m dipping my toe into giving back and being of service. Yesterday, I did some work with my surgeon and nurses at Broward Health to help bring more awareness to male breast cancer. Many tears were shed, which I did not expect, but I was overwhelmed with gratitude at seeing everyone again. I got home and thought it would be a good time to begin this journal entry. In an hour, I’m meeting my Zumba instructor who’s leading a breast cancer fundraiser at Dillard’s. There’ll be 3 of us who have survived. All I can say to the men is, if you suspect anything, just go get it checked.