Barb Swanson Sanders

August 2018

I have been an educator for 47 years, including a kindergarten teacher, an elementary school librarian, a bookstore owner, an adjunct professor of Children’s Literature at Concordia, and a national speaker for librarians and teachers on how to use kids’ books in their classrooms. I am a wife, a reader and a traveler. I am also a three-time cancer survivor.

I survived two bouts with breast cancer, in 1999 and 2008, having lumpectomies and radiation both times.

In December 2015, my husband and I were on Kona spending two weeks in a friend’s condo. I had been complaining that my swimsuits were suddenly much tighter; I had a “pooch” that I’d never had before. I was really tired, needing a nap once or even twice a day. I had lost my appetite and I developed acid reflux, bloating and gas pains that were extremely uncomfortable. Those were all unusual symptoms for me, so we went to an urgent care to see a doctor. The doctor said it was probably a virus, or maybe gall bladder issues, or, possibly, a urinary tract infection. He gave me antibiotics, but they didn’t make any difference at all. We were leaving for home on the day after Christmas, but I was feeling so bloated and uncomfortable that I was nervous about flying. So, we went to the Kona Emergency Room on Christmas Day. The doctor said he was sure I could fly, but he had no idea what was wrong. He told me to call my doctor when I got home.

The day after we got home to Portland, my doctor worked me into her schedule and said that she wanted me to get a CT scan immediately, that day. “Go to the ER,” she said. “I’ll call them and order the scan. We’ll get the results much sooner that way.” Twenty minutes after the scan, two ER doctors and two nurses came into the room. They said that they had discovered lots of tumors and fluid in my abdomen. The diagnosis was ovarian cancer, at least Stage 3C. I was instructed to call someone for follow-up the next day.

We didn’t wait. That evening we called my breast cancer oncologist who had just examined me two months earlier. He was shocked at my diagnosis and said that he would call us back in the morning with the name of the best gynecological oncologist he knew and a schedule of where I should be, and when. He really came through! In the next week, I had a port put in, had a large amount of fluid removed from my abdominal cavity, went to a class on “What to Expect from Chemo,” had baseline labs taken (my CA125 was 540), and toured the “Chemo Spa” where I would soon spend so much time. I started my first round of chemo (taxol and carboplatin) on Monday, January 11, 2016.

From the very beginning, I had a team around me… my doctors, a patient advocate, the oncology nurses, and my family and friends. I never went to a doctor appointment or chemo treatment without at least one other person who cared about me also present. As my doctor talked to us the very first day about what to expect, he had a diagram of a woman’s body in front of him. He marked where the ports would go, where the tumors were, and, as he discussed treatment, he wrote down what he was saying. Then he gave me that sheet of paper after the meeting. I now had a visual record of what the doc had told us! The doctor talked to us candidly about why he made the decisions he did. He said that I was so sick that he did not want to do the traditional surgery first. He wanted me to start chemotherapy immediately, do 11 treatments, and then see where I was before he scheduled the inevitable surgery.

I was lucky. I didn’t have lots of symptoms during chemotherapy. “Tingly tongue” happened the very first day (ice chips helped solve that!). I had very little nausea, but I had major problems drinking enough fluid and eating enough calories each day. The first week, I lost 10 pounds! I kept a journal of what I ate, when I drank fluids, and I monitored the “output” of everything in the bathroom. I just couldn’t seem to manage the “input” end of things! I was still extremely tired all the time. I was taking multiple naps each day and sleeping 10 hours a night, but I was always tired.

Ultimately, we discovered that my major problem was anemia. For at least four weeks, I went to the doc six times a week — once for chemo, 3-4 times for what we called “red blood cell shots,” and at least once for additional lab work. I ended up having a blood transfusion in March because we just couldn’t keep my counts on track. This was my problem for a long time after chemo was over. I just got the OK from my doctor in March of this year, when he said that I was “back where I started” on my blood work. It had taken two years.

I dreaded the moment that my hair would fall out. It started happening in the shower on January 30, after three chemo treatments. After a friend shaved my head, my husband said, “I’m next,” and we both ended up bald as billiard balls! I decided to “rock the bald.” I didn’t get a wig but bought some sparkly hats instead.

Two things were important themes in my recovery. Humor was something I didn’t think it would be so important during cancer treatment, but jokes, tricks, funny cards, and “tumor humor” popped up wherever I went. The Chemo Spa was full of laughter much of the time. Oh, we cried too, but we usually ended up laughing about something. My doctor believed that my positive attitude made all the difference in my recovery time! I’ve always been a “glass half full” kind of person, but I also make an important point whenever people complimented my attitude. I was so blessed to have a solid phalanx of friends and family. I had few financial worries, having great insurance and some solid savings that could help us over the period as we got used to my not working. I was grateful for all that, still am, but I understand that all women are not so fortunate.

I had my surgery on March 28, 2016 and was only in the hospital for four days. I recovered at home for three weeks and then began my second round of chemo, this time with taxol and cisplatin, on April 18. This was a much more difficult treatment for me. I had an IP port put in during surgery, and I would be at the Spa for as many as six or seven hours getting four huge bags of fluid injected into my abdomen. I laid flat for this session, rolling from side to side to evenly distribute the fluid throughout my body. I could actually see my stomach extending, like a waterbed being blown up!!! I was uncomfortable for several days following the treatment. I got six of these sessions and was glad when they were over.

The summer after my treatments stopped, I had genetic testing to determine if I had the BRCA gene mutation. I had been tested for the BRCA 2 gene mutation after my second breast cancer, but it didn’t show up. As a woman of Swedish descent, everyone thought it possible that it ran in my family. No other women had had breast cancer or ovarian cancer that we knew about, but many of my paternal uncles and my father had prostate cancer, which is connected in the genealogical lineage. This time, when I was tested for the gene, they discovered that I DID have the BRCA 2 gene mutation! If I had discovered that in 2008, I probably would have had a complete mastectomy and hysterectomy. It might have prevented my ovarian cancer. It might not have.

Today I am cancer free. I count my blessings and get my check-ups. And I know that, while my life has changed, I still look forward to every morning, the way I always have!!