“Oh yeah, your wife has cancer and will need chemotherapy. Now I’ve got to get back in there and finish.” As the surgeon turned and walked away, my world crumbled. Everything slowed down and felt muted. I stumbled back to my seat in the hospital waiting room. A friend hugged me, and we sat in shock. My mother-in-law feverishly texted and called family members, all while saying, “I knew it. I just knew it was cancer”! But I didn’t! I didn’t know or believe that! My amazing, wonderful, healthy 38-year-old wife had a less than 2% chance of having ovarian cancer. We knew there was a mass from a CT scan, but there was a very good chance it was benign. How could this be happening? We didn’t know anything about ovarian cancer.
This was January 24th, 2019, and it would be a day that changed my life forever. Weeks after the surgery, pathology revealed that she had been diagnosed with stage 3B high-grade serous epithelial ovarian cancer AND stage 1B cervical cancer.
I knew there was no way I could help her fight and take care of her the way she deserved if I continued to work. I made the difficult decision to leave my career and focus solely on being her caretaker. From that day on, I have been by her side through everything. Through two major surgeries, 14-hour chemotherapy sessions, alternative treatments in Mexico, immunotherapy clinics in California, every doctor visit, every blood draw, every scan, every day of my life, fighting cancer with her. It’s been three and a half years, and I’d love to say she’s cancer-free. But she is not. She is in her 2nd recurrence. We are currently looking for clinical trials that may be a better and more effective treatment option. We spend a lot of time researching, reading clinical trials, and looking for anything that may help. We focus a lot on quality of life because that’s the most important thing. She feels good and looks great, and we will never stop looking for her cure.
As a caregiver, it is very important to take care of yourself too. This can be difficult because you constantly have to put someone else above yourself. You have to make the best decision for them, but it may not be the best for you. Having support from friends and family is crucial. You must have someone you can talk to. I mean, really talk to, unabashedly. You need a safe space to share your feelings, sorrows, fears, and hope. I found having monthly sessions with an energy coach most helpful for my mental health. I did not have these sessions until my wife had her 1st recurrence. I immediately noticed a difference in how I could cope with the situation even though nothing had changed.
I also try to connect with nature as often as I can. I find comfort working in my garden, taking a walk in the park, a trip to the mountains, and feeling the sunshine or the rain. It helps me to feel present. Cuddling with my dogs always makes me happy! They have been essential in keeping my spirits up. To take care of my physical body, I schedule a monthly massage. I also suffer from migraines, and being a caretaker has forced me to find a better solution to my own health issues. I can’t take care of my wife if I’m out of commission with a migraine. After suffering for almost 30 years, I found a medication that works. Combining all of these helps me be my best for her, myself, and us.
What would I like others to know about the caregiver role…… it’s the hardest thing I’ve ever done in my life. You literally wake up every day and face life or death. You make decisions that have life or death consequences. People have no idea how stressful that is and what it can do to you both mentally and physically. I never in a million years would have thought that my wife would be diagnosed with a rare cancer and that I’d be her caregiver at 41. But that’s exactly what happened.
My experience is probably different from many because I care for my young spouse. Many caretakers are caring for a parent or someone much older. You can feel helpless at times. You may feel like there’s nothing you can do. There will be dark days. There will be sorrow, immense pain, and heartbreak. But there is also strength, courage, love, and yes, even joy. We all have an unknown future. Caring for my wife with ovarian cancer just throws that in my face daily. We are forced to face it more than someone else (who isn’t battling cancer). Every day I remind myself- I will not let the fear of tomorrow steal the joy of today.
If you are new to caregiving, I would advise you to get organized. Take notes, lots of them. Your loved one will be overwhelmed. You probably will be too. But write down all your questions for the doctor, nurses, pharmacist, therapist, and anyone else you may be seeing or meeting for treatment. Make notes about medication, times, and side effects. My duties have ranged from full-time caregiving (after surgeries and chemo treatments) to something as simple as getting her supplements and medication and making appointments.
As this is now a chronic disease, her health changes, and so do my caretaker duties. When she is well, I initially found it hard to let her do things again because I felt like I should be doing them. But I learned that if she wants to do something herself and she can, I should let her. Ovarian cancer support groups can be a wealth of knowledge from people going through a similar experience and may be helpful for some people. And lastly, don’t forget about yourself. You are important too! You are the glue holding it all together. Be kind to yourself.