The Business of Being Sick With Cancer: A Revelation

Today is my birthday! I was not so sure I would make it today as the last two years have been very difficult. I have not written for a while and for that I apologize. The words were there but hard to put to paper.

In the last month, I had a revelation about my illness. This is my history. I am a 13-plus year survivor of ovarian cancer. Through that, I have had four main oncologists and several nurse practitioners. I have had three major surgeries, many rounds of chemotherapy, radiation, immunotherapy, experimental medications, HYPEC, SBRT, Gamma Knife surgery, infections unrelated to the cancer, countless numbers of blood draws. I have had numbers go up and down. I have had good news and bad news. I have had it all.

In the last two years, I had a brain tumor related to the ovarian cancer and learned about the blood/brain barrier. I had a bacterial infection that took almost five months to diagnose and to find which antibiotics would fight the infection. The antibiotics lasted almost a year with some IV meds I gave myself through my port. I have had yeast infections, UTIs, hair loss and hair thinning, gastric issues with the antibiotics, and fatigue that would not stop.

So, what is this business of being sick? I am not talking about the dollars spent on being ill. This is different. If I go back deeper into my history fighting this cancer, I have had respite of anywhere from a day to weeks to years of feeling OK. One medication kept me going for almost three years with a sense of winning the fight. I would guess that my physicians were amazed that I still had the mindset to keep fighting. “I would be interested in participating in a trial.” “Let’s get going on this new round of chemo as soon as possible.” “I want to try this newer medication.”

I was able to get off the antibiotics by the end of January but it really took its toll on my body. I lost weight due to not eating as I was pretty sick from the strong medications. But, after a few weeks off, I started feeling better enough to eat. It is amazing what food will do when you feed your body. I have become stronger and have gained a few pounds back. Can I walk a 5K? No, not yet, but soon. But I am being a better partner at home, doing the tasks that I just could not do when I felt so ill.

My revelation came a couple of weeks ago when I got out of bed and realized I did not have to choose to wake up and feel sick because I actually felt better. Usually, my mindset was: be close to a bathroom, not go out to dinner, rest for hours on end, take an extra hour to do something that could be done in minutes, be forced to eat and then throw-up, and clean my house. My wonderful husband took over those things I could not do.

When I woke up and decided that I felt better and actually had the energy to finish a project that needed done, the window and wall got painted. The crafts that I like to do — beach glass, driftwood and shells got finished. I accomplished them because I was actually feeling better. I could walk up the stairs to my office in our loft without having to sit to catch my breath. It was amazing.

My revelation was that I finally felt better to not be sick. My head was telling me that I can get back to the life that I wanted to live. I can cook dinner, clean and declutter the house, work on my hobbies, do activities with family and friends and be the Julie I remember, an active partner in a marriage. I was not getting up each day and wondering what ailment was going to drag me to the depths of despair that I was feeling every day. This business of being sick was put out of business!

Of course, I still have a long way to go to build up my strength and stamina but now I have to motivation to do so because I feel better. I am on a new oral chemo that so far had been tolerable with minimal side effects. Hopefully, this will be something that I can continue and fight my ovarian cancer as a chronic illness and can use maintenance medications to control the disease.

Thank you to all of those who have supported me in my ups and downs, my highs and lows, and my good numbers and bad numbers. My husband, family, and friends have seen me at my worst and best. As spring renews us all, it is especially poignant for me as I too am feeling renewed. I am blessed that I made it to 73. Every day is not promised so we must celebrate each day with joy. I choose joy.

 This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.