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Communication Was Key to Managing Multiple Myeloma and My Career

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Beth Ayen - Blogs
By Beth AyenJuly 26, 2021

When I talk to others with multiple myeloma, what to do about work is on almost everyone’s mind. I think this is probably very common across all cancer patients, but because myeloma can be treatable for many years, patients want -- and need -- to work, even though it can be extremely difficult.

Cancer was very expensive -- even with my husband’s excellent insurance -- so we relied on credit for a couple of years as we traveled to Denver from Rock Springs, WY, for my bone marrow transplant. It was hard to stick to a budget as we tried to survive each month, so we made several poor financial decisions during that time.

About a year after my bone marrow transplant, I began to feel like my old self: healthy, well, and ready to go back to work. I started out as a substitute teacher and in-school tutor at my kids’ school. This eventually led to me going back to school when I was 42 and in remission to get my master’s degree in elementary education and certification.

After two and a half years of school -- just when I started my student teaching -- my myeloma relapsed and I immediately began radiation and chemotherapy. But even with this change I got hired as a third-grade teacher.

After working with teachers for many years, I knew there was a lot that went on behind the scenes with meetings, planning, classroom decorating, and preparation, but I guess I didn’t realize how much. Beyond teaching time, which involves being the entertainment for 7 straight hours, I was spending about 20 hours a week preparing to teach.

Managing a Career -- and Cancer

I taught in my own classroom for 8 years, and that entire time I was getting some sort of treatment: chemotherapy, radiation, or both.

One of the most difficult things to navigate as a classroom teacher with cancer was scheduling and making it to doctor’s appointments. I live in Wyoming, and in my town there’s only one oncology center where you can see an oncologist and get IV and radiation therapies. They don’t have evening or weekend appointments like some places.

I had to go during my contracted hours, which meant that I had to find coverage for my classroom and potentially use sick leave for every appointment. It was difficult to ask my principal every time or ask my team to cover my classroom. I felt like I was letting them, and my students, down -- like I wasn’t doing my job to the best of my ability.

At one point I was having to go several times a week for chemotherapy. I would get my students ready to go about 15 minutes early. They would disperse to other classrooms for the last few minutes of school while I hurried to my car, past all the parents, and out of the parking lot before the bell rang. These appointments were the quick ones. There were other, longer appointments that couldn’t be done at the end of the day.

So on the days I felt sick from treatment, I had to buck up and go to school. Finding and preparing for a substitute was more work than just going to school and getting through the day. I was worried about my sick leave balance and what my principal was thinking about me since I was having to take so much time away from school.

Health Crises at Work

I had a few scary things happen at school as well. One day my blood pressure and heart rate were out of control and the school nurse had to drive me to the oncology center to find out I had a pulmonary embolism. They showed my husband how to give me a shot of medication in my stomach to dissolve the blood clot, and I went to work the next day. I also stumbled in the hallway several times from weakness, pain, and dizziness.

Many nights and weekends I would be the only one in the building working. On Fridays, my husband would come and get my classroom ready for Monday while I graded and did all of my paperwork and planning. I hoped I could keep this up, but my body was declining.

School district administrators offered accommodations to help me get through each day. I was given permission to sit when teaching, have someone else walk my students across the building, and get oxygen when needed. These were helpful, but I felt like I wasn’t fulfilling my duties and I was a burden to my co-workers.

My health deteriorated. Working at least 50 hours a week and doing treatment was draining on my body. Eventually, treatments stopped working and we were having a difficult time keeping the myeloma under control, resulting in several hospital stays with pneumonia. We made the decision that I would retire early. My dream of having my own classroom was over, but I knew that I wouldn’t be able to serve my students the way they deserved anymore if I stayed.

Lessons Learned
I learned several things from working as a full-time teacher during those years. I learned that it’s important to communicate with your supervisor about your health issues. For a long time I tried to act like I was fine, and when difficult things arose, my administrator was shocked. She needed to know that I was struggling to find people to cover my class, that I was using my sick leave, and -- as difficult as it was to admit -- that I wasn’t always feeling great during the teaching day.

It was also important to let people help me. The custodians were always happy to move furniture or clean desks or climb a ladder for me. My teammates were glad to help with sub plans, covering my class for appointments, or walking my kids to music class. Our assistants were always looking for opportunities to help me with grading or copying. I wanted to do it all myself, but I needed help.

I also needed to give myself permission to be done.

I know this isn’t a good option for a lot of cancer patients. Cancer is expensive! Insurance is essential! So it’s important to research all the options. Maybe someday I can go back to work if they find a cure or a long-term therapy. Maybe I’ll be able to work from home or in a less physically demanding job. We’ve been fortunate to receive long-term disability insurance through my school district as well as social security. This might be an option for many myeloma patients. Taking time off may be the best choice, even if it’s only temporary.

Working is hard as a cancer patient. We want to feel like we’re living a normal life. We want to feel like we’re contributing to our families’ needs. How do we do this when we’re barely surviving each day physically and emotionally? How do we serve others when we have to face the reality of our mortality? We take each day one step at a time, make decisions with the help of family, friends, and medical staff, and just do the best we can.

 

 

Photo Credit: shironosov via Getty Images

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About the Author
Beth Ayen

Beth Ayen has been living with multiple myeloma for 23 years. Recently retired from teaching, Beth loves spending time with her grandchildren and taking road trips with her husband, Mark, around their home state of Wyoming and beyond. Her passion is to connect with people, especially those with cancer, to encourage them through their journey.

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