From Advocate to Patient to Advocate by Donna McMillan

From a young age, I have always enjoyed helping others. You could find me volunteering for various charity organizations and taking a volunteer leadership role with them to promote their cause. I became a social worker and worked at hospice assisting patients and families through the end of life. In mid-life, I became an attorney because I wanted to help and advocate for others with a stronger voice. I advocated for patients, for the disabled, for Veterans, and for the cognitively impaired. I was not the one who needed advocacy.

As I would soon find out, life has a way of humbling you. My cancer journey began in September 2021 after a CT scan determined that I had a mass “highly suspicious of ovarian cancer.” That suspicion was confirmed soon after when I underwent a hysterectomy. It is common for cancer patients to feel shocked to some degree with their cancer diagnosis and I was no different. While some of my paternal male relatives have had prostate cancer, no female on either side of my family has had any gynecologic cancer, breast cancer, or any other cancer, as far as I am aware. Interesting to find out that I was the first. At sixty-one years old. It was even more interesting to discover that I had a genetic mutation that predisposed me to cancer. The same mutation that most likely predisposed all those paternal male relatives to prostate cancer.

My ovarian cancer diagnosis came the day after my surgery while I was in the hospital. An unexpected turn came when my three-day hospital stay turned into seven days when I developed multiple blood clots. I later learned that blood clots are a common side effect of both cancer and major surgery. Next surprise, I also had a genetic mutation predisposing me to blood clots.

What I learned in a very short time, was how quickly anyone can go from being capable and energetic, to frail. And in that frailty, I was very debilitated. Initially, I could not walk 50-100 feet after my surgery. I needed assistance showering, very humbling to say the least. I did not have the energy to think or express my needs. I needed an advocate. Luckily, I had my husband who was a caregiver, chauffeur, housekeeper, cook, and advocate. Kudos to all the caregivers out there who do what they do day after day. We need you more than you will ever know.

After six rounds of chemo and a very blessed no evidence of disease (NED) scan later, I began the long journey into the after cancer where I remain today. I continue to take maintenance medication to hopefully lower my chance of recurrence. I slowly regained my strength, though not all of it, by doing just a little more each day: adding twenty to twenty-five steps to my step count, taking a few more bites of that nutritious meal to give my body what it needed to heal, resting when I needed to, but shortening those daytime naps so they didn’t interfere with my nighttime sleep. I forced myself to think through my questions. I wrote them down to assist me in remembering because the brain fog and chemo brain were sometimes causing chaos. As I slowly became stronger, I also became more able to advocate for myself.

While healing both emotionally and physically, which is a journey that fluctuates and is ongoing, the helper in me slowly re-emerged and I had the desire to share my story in the hopes of helping others. If you ask me what I want you to know, it is these things: first, don’t dismiss innocuous symptoms like bloating, feelings of fullness, back pain, and fatigue. You know your body. If something doesn’t feel right, see your medical provider. And keep seeing them until they listen. I attribute my being here to the quick action of my gynecologist. He took my symptoms seriously and sent me for testing right away. Early diagnosis is the key to successful treatment of many cancers. Advocate for yourself when you can or ask someone else to do it on your behalf if you cannot do it yourself. Second, don’t assume because the males in your family have a male cancer, like prostate cancer, that you are safe if you are a female. Or that if the females in your family have a cancer, like breast cancer, you are safe because you are a male. What I’ve learned is that you can receive an inherited genetic mutation from your father, your mother, or both and if you have it, you can pass it along to your daughter or son. If you have concerns, please speak with your medical professional or a genetic specialist. Knowledge is power. Knowing your risk and the risk of your family members may provide you with steps to take that can lower your risk of cancer and theirs or enable you to get diagnosed earlier which can lead to a better treatment outcome. You may be saving the life of someone you love.

While I have resumed my advocacy by sharing my story and providing support, information, and resources to other cancer survivors and previvors; know that I also still need an advocate. I can’t do it all alone. The toll that cancer treatment takes on you is real. There are days that I do just fine and there are days, like if I am fighting for hours with the insurance company over the coverage of a necessary medication, I must give in and turn it over to my husband. Sometimes it is just too much. And that’s okay. The after-cancer journey is filled with lots of bumps in the road. We haven’t gotten this far alone. We don’t have to do it by ourselves. Be an advocate.  Ask for an advocate. Whatever it takes, whenever you need it.

Donna McMillan is an ovarian cancer survivor, and former social worker and Attorney committed to supporting others in the after cancer. You can follow her at www.survivingtoflourishing.net.