Nikki Wheeler

March 2024

What a year it has been! I’m happy to say goodbye to my 40s and 2023. My cancer journey began at the beginning of January 2023. Life was stressful – Christmas and my 49th birthday, owning our own business, a dog with an undiagnosed autoimmune disease, and four kids ages 18-23 trying to find their way in life. I cried to my family that they needed to help more around the house and take care of themselves— one more thing, and I was going to break. I didn’t realize that I had already reached the tipping point. I felt bloated and constipated. My husband scheduled a massage for me to help with the stress. I didn’t have a primary care doctor. I’d been healthy and too busy to worry about myself. So, I went to urgent care. The doctor took me at my word that it was constipation and prescribed the colonoscopy prep to clean me out. That was an awful weekend trying to drink that giant bottle. He told me that if I didn’t feel better by Monday to go to the emergency room. I didn’t feel better. I woke up in the middle of the night with my heart rate at 122 beats per minute. I was scared. In the emergency room, they ordered a scan. We were joking with the nurses about poop. I felt fine. Hours after the scan, the doctor finally came back into the room, and my life changed forever. “I have no good news! You have masses on your ovaries that I’m sure are cancer.” He offered to give me a prescription and send me home. He looked utterly hopeless. I still have PTSD when I think about it. Everything about him said you’re dying. But I didn’t feel like I was dying. I just felt shock. I managed to get an appointment with a gynecological oncologist for Thursday night after crying to their office not to make me wait until the following week. For two days, we lived our lives afraid to even talk about it. I was so scared to hear what they were going to say. But they were so kind and supportive. They told me this was treatable from the beginning, and we had a plan. There was hope! I didn’t want to know the staging at that point (I did look back later at the notes from the visit in MyChart and saw that he wrote stage IV) because I couldn’t handle any negative thoughts. I didn’t want my friends and family to think I was going to die (they still did).

Starting treatment was a process. The plan was three rounds of chemo before surgery to try to reduce the cancer so that the surgery wouldn’t be as invasive. The main thing I heard at the appointment was that if he did the surgery immediately, I likely would lose my spleen and have a colostomy bag. I didn’t want that! After surgery, I would do three more rounds of chemo. Next, I had 15 liters of fluid drained from my abdomen, involving another trip to the emergency room because waiting for a scheduled appointment would have taken a week. Next was waiting for the pathology report to confirm the cancer diagnosis and for my insurance to approve the treatment. While we waited for that, I met with the oncologist at the local cancer center who would oversee my chemotherapy, and I had a port installed (lots of robot/electric car jokes). My best friend since middle school flew in to support my husband and me, and we shopped for wigs. Other than being a little tired and living in a state of shock, I was feeling pretty good. I tried to get all the accounting and tax prep done at work. I bought a couch for the office to nap if I was tired. I had passport photos taken, so I would still have my hair for the picture. I accidentally started reading a book where the main character’s best friend had ovarian cancer (googled the book ending and quickly put that one down). I quickly made 1000 paper cranes (I wasn’t going to be like the girl in the book I read in elementary school who died of leukemia before she could finish 1000). Finally, four weeks later, on February 7, 2023, I started Carbo, Taxol, and Avastin.

Chemotherapy wasn’t nearly as bad as I thought it was going to be. We prepared with plenty of entertainment (a movie on the iPad, coloring, a small puzzle, origami) and lots of snacks. It was a long day, but we did it! I learned quickly that the steroids keep you from sleeping, so it was also a long night. I knew that exercise was important, so the next day, we went for a 30-minute walk with the anti-nausea drugs in my pocket, just in case. I felt pretty good. About bedtime, I noticed my face was flushed. Worried that I was having a reaction, I called the nurse hotline. We talked to her for a long time, and she finally determined that I sounded too upbeat to go to the emergency room and that we just needed to keep an eye on it. The next day, I realized the redness was just on my face, neck, and upper chest—the only areas exposed to the sun. I knew that the drugs could cause sensitivity to the sun, but I didn’t think a short walk on a cloudy day in February would give me a sunburn. I learned to use sunblock, lots of sunblock. Soon after the first treatment, I started to lose my hair. I couldn’t handle the feeling of the clumps slithering down my back in the shower, so we shaved it off. I bragged that my wig was the hair that I always wanted.

My second round of chemo didn’t go as well. First, I had a reaction to the anti-nausea drugs, and it was determined that I’m allergic to polysorbate 80. Then, shortly into the Taxol infusion, I nearly went into anaphylaxis. They had the epi-pen and crash cart ready. After a lot of IV steroids, I came out of it. The oncology nurse with 20 years of experience said it was the worst reaction she had ever seen! Taxol wouldn’t work, so we switched to weekly Abraxane infusions.

I was feeling pretty low at this point. Nausea would come and go. I would take a nap on the couch in the middle of dinner. I couldn’t sleep lying down at night. I had a scan that showed that my intestines were twisted. But that was when some of my new favorite friends came into my life. A client connected me with his wife, who is a rectal cancer survivor, and with her friend, who is a qigong and breathing teacher. They completely changed my life. I started doing the breath work at home. They would take me for walks in the park, and we would stop and do qigong. I started feeling stronger and healthier. I always knew in my gut that I would be okay, but I was beginning to feel it.

About six weeks into my treatment, my husband reached his breaking point. He had been amazing, trying to do everything at home and work, protect me from the outside world, and manage the kids, including a high school senior who really didn’t like school. He waited until he had finished a meeting at work and until my friend arrived from California to tell us that he was having chest pains and needed to go to the emergency room. His blood pressure was 200/120. The good thing was that we didn’t need to wait in the waiting room with those numbers. He spent three days in the cardiac care unit while they ran all the tests. Turns out his heart was great; his anxiety was not. We both needed to reduce our stress! I was scared because it felt like my support system was breaking. Thankfully, my new friends picked up the slack. When I thanked them, they said, “We saw you needed us and came running.” As the one who was always the caregiver, it felt so wonderful to be seen and cared for without even asking.

I spent the next six weeks walking, hiking, doing yoga, and getting stronger for surgery. The weekend before surgery, I went on a 5-mile hike. My in-laws stopped by to wish me well that day. When I wasn’t outside with my husband, they thought I was napping. The day before surgery, I dragged my kids for a walk in the park, okay, 4 miles in the woods. I may have had to exaggerate how close we were to the end of the walk a few times.

Due to availability at the hospital, I had four rounds of chemo before my surgery at the beginning of May. I have a nice scar from my pubic bone to my sternum. The doctor spent quite a bit of time relaying out my intestines and performing a complete hysterectomy along with removing my omentum, appendix, and four lymph nodes. At that time, I was diagnosed with stage 3b, low-grade serous carcinoma. The pathologist did include a note that since I had already had chemotherapy, he couldn’t rule out high grade before the chemo. However, I went with the chance that I had low grade. The day after my surgery, I learned that my doctor was leaving the practice. I may have been his last surgery. Five days later, I was discharged by a different doctor.

Recovering from surgery was a process. I made it home the day before Mother’s Day. Warm weather arrived just in time. I spent my time on the chaise under the umbrella in the garden. I remember feeling so happy and grateful to be home. It may have been the joy of surviving that long, or it may have been the oxycodone. Either way, it was wonderful. The surgery went so well that my oncologist was happy to let me wait until after my son’s graduation and graduation party to finish my chemo. I spent the summer with weekly infusions on Mondays and hikes in the mountains on the weekends. My last chemo infusion was on August 2nd!

After finishing chemo, I continued with Avastin infusions every three weeks. I did start to have raised blood pressure, which was concerning. In October, I had another CT scan, which showed calcified lymph nodes that my oncologist was worried about. We followed that up with a PET scan. Even though my CA125 numbers were low and still going down, I was so sure that the cancer was back. My current oncologist is a general oncologist, so she referred me to Fred Hutchinson Cancer Center. Thankfully, when the doctor there saw the scan, he said there was nothing to worry about and explained the slow-growing nature of low-grade serous ovarian cancer. Now, I’m only taking Letrozole for maintenance with follow-up scans every three months.

I had my last scan in January, and it showed no sign of recurrence and no change in the lymph nodes! I could let my breath out. I finally am starting to feel the light on my face at the end of the tunnel. I know that there may (or may not!) be other tunnels, but this is a glorious place to be in for today. I am focusing on what I need to do to take care of myself. Acupuncture for hot flashes has been amazing, and I highly recommend it. I’m practicing qigong and breath work regularly. Walking, hiking, and getting outside are essential. I am also listening and being present in my body, letting the people I love take care of their own stress (that’s a hard one), and not putting off dreams for a better time. As I finish writing this, we are preparing to leave tomorrow for a spa/yoga resort in St. Lucia to celebrate. As my friend told me, “I would not wish cancer on anyone, but it certainly has made my life richer.”