Discovering That My Cancer Had Recurred

We have the CA-125 test, which is a diagnostic test, and that started to go up. I’ve had three or four recurrences so far. The last time, I had a PET scan; it revealed a cluster of lymph nodes in my inguinal area, which is my lower right groin. Those just appeared. I had just had surgery to remove one, and then more popped up. The PET scan also revealed that I now have two cancerous lymph nodes in my lung and one close to my heart.

Then something odd happened. This is clear cell carcinoma, known as the zebra or unicorn of all ovarian cancers. I developed a rash on my chest. I had radiation earlier this year along my chest and under my arms, so I thought the rash was from that. They did a biopsy, and I now have clear cell ovarian cancer on my skin, which is extremely rare. We looked it up; maybe 0.9% of all ovarian cancers present in the skin, which is very odd.

Receiving Prognosis and New Treatment Recommendations

So, this was two or three weeks ago. We found this out and went to the doctor. I knew what this meant. I knew this was not going to be a good doctor’s appointment. 

My parents and my wife, Jennifer, went with me. The doctor, as professionally as she could, told us, “We’ve been on this cancer journey for four years now, which is two years longer than what we anticipated.” She said, “I could put you on chemo. It might work. You’ll probably feel sick. Your quality of life really isn’t going to improve. We might buy you a little bit of time. What I really suggest you do while you’re feeling ‘good’ is take this time off work. Go on long-term disability. Do all the fun things you’ve ever wanted to do while you feel good enough.”

I work for an amazing company with amazing benefits. That’s what I did. We are getting ready to do some fun things and have some special plans.

Self-Advocacy During Treatment

How I’ve advocated for myself: I have done some research, but I really have to give so much kudos to my wife, who has done a lot of it. 

I feel like we’ve had doctors who are bulldogs about getting medicines approved. I’ve done immunotherapy in the past. Asking a lot of questions and noticing changes in my body is a big way I advocate; paying attention to all the little changes and bringing them up. 

I have some brilliant doctors in whom I have complete trust, and they’ve truly done everything they can. They’re learning a lot, as this is new to them. I hope that for future generations, this will help the learning process.

The Impact on My Family

My wife has been an angel. It’s been very difficult for her. Everyone processes emotions differently; she processes them differently than I do. It’s been very, very hard. I’ve even said to her, “Wow, you did not sign up for this.” 

Every day, I feel like I owe her an apology, but I know this isn’t something I caused. I can see how worried she is. 

Jennifer, my family, my dad, stepmom, her family, and a huge community of friends; they’re all worried, but they are right there with me, encouraging me. Jennifer is right here, and anytime I have a tough moment, so is she. It’s been really hard.

My grandkids are eight, four, and a brand-new baby. We haven’t really talked about cancer with them. The eight-year-old was four during my first chemo rounds and saw me lose my hair. She calls me Mimi and said she didn’t like my hairstyle, which made me laugh. With our son, her dad, we’ve talked in depth, but we’re leaving it up to our kids to talk to their kids when they feel the time is right, using the right words. 

We are here for questions, but as grandparents, we’re not in the position to explain cancer unless they ask. I’ll answer carefully, but they’re still young, so we haven’t had big discussions. 

They sure have been a bright light to us. They visited a couple of weekends ago, right after we got bad news. Holding the newborn and playing with them lightened the load in my mind.

We have two sons, one is 21 and one is 31. They’re strong men, but handle it in different ways due to their personalities. The 31-year-old is a rock. I can talk with him in depth, and he shares things he’s heard about science. We brainstorm and discuss a lot. They want to know every detail, so we plan when and how to tell them. The 31-year-old lives six hours away with his family, and the 21-year-old lives with us. He’s been amazing. He gives random hugs and prayed with us last night. That made me feel good. As a family, this has been a growing experience. 

We’re learning to lean on each other, that it’s okay to feel weak or to cry, ask questions, or worry — but most importantly, to be honest and truly lean on each other.

My Message to Others Facing a Recurrence

Yes, the cancer has come back. Everyone’s kind words, encouragement, and prayers mean so much. I’m not giving up, I’m not losing hope, and I’m going to keep pushing. I don’t want anyone to look at a recurrence and think, “Never mind.” 

Just don’t lose hope. Keep hope with your medical team. Science will hopefully come up with the right therapies. The encouragement has meant so much; please keep encouraging, and encourage others who need it.

I don’t want people to lose hope that cancer can’t be cured, or that miracles don’t happen, because I believe in miracles, and I want others to believe too. The encouragement keeps me going. We’re going to keep fighting.

Navigating Identity as a Woman and Caregiver

To keep showing up for others, despite what I’m going through mentally, has really helped me. I love to make people laugh and bring a smile. It keeps me going.

Being in a position where I’m the one needing care is difficult because I’m used to caring for others, and I love to help. But now, I need help. It’s an odd feeling. It’s hard to ask for help, but often people just show up intuitively. 

I’ve stayed in a community surrounded by friends and family. My wife is amazing. To have her care for me in such a different way than you would expect as a spouse is hard, but I want to continue to show up for her and my family as much as I can. Being able to still do that makes me feel good.

My Final Reflections: Staying Hopeful Through Hard Times

Even though this cancer has recurred again, and this is a really tough recurrence, I want people to know that even in the toughest times, like what I’m dealing with right now, you can’t really know exactly what someone else feels. 

But even in your darkest times, open your eyes, look around, and find your people. Find your helpers. Find encouragement. Try your best to find someone to talk to, vent to, or encourage. Just don’t give up in your toughest time. Whatever you’re facing, cancer, trauma — don’t go down that dark hole mentally. Be mindful of your mind. If your thoughts are getting dark, find a way to turn it around; help someone, encourage someone, be there for someone, pick up the phone, call someone.

Find resources: support groups, communities. There really is a lot of help. Sometimes you just have to search for it. Stay hopeful, don’t give up, and don’t let yourself go down that dark hole mentally. Look for people to inspire. Take it on as a chance to do good for others, to be a light. I really believe that’s important for people to know.