Rural Cancer Care | The Patient Story

Finding Rural Cancer Care

Beth’s Story (Pt. 2)

Beth A. describes how she’s navigated treatment, side effects, and life in general after getting diagnosed with multiple myeloma almost 25 years ago.

In this segment, Beth shares the difficulties of having to get cancer treatment while living in a rural area or small town, and how she managed the extra travel throughout radiation, chemotherapy, and an autologous stem cell transplant.

Thank you for sharing your story, Beth!

  • Name: Beth Ayen
  • Diagnosis (DX)
    • Multiple myeloma
    • Relapsed/refractory multiple myeloma
  • 1st Diagnosis:
    • Age: 29 years old
    • Symptoms: Extreme pain between shoulder blades, sternum, head for 1 year
      • Burning sensation that radiated out
    • Tests for DX:
      • MRI, found a plasmacytoma compressing spinal cord
    • Treatment
      • Radiation therapy
      • Chemotherapy
        • VAD (Vincristine, Adriamycin, Dexamethasone)
    • Autologous stem cell transplant (SCT)

Thank you to Karyopharm for its support of our educational program. The Patient Story has full editorial control of our content. The interview has been edited only for clarity.

Rural Cancer Care Experience

Beth underwent radiation therapy to decrease the lesions and the plasmacytoma on her spine. She then had the chemo, the VAD, which did not reduce the lesions. The following year, Beth went through an autologous stem-cell transplant and responded well.

How did you manage getting treatment in such a rural area?

Because we lived in such a small town of Wyoming and really in Wyoming, they don’t do stem cell transplants anywhere, so we had to go to Denver, which is where my parents lived. That worked out really well.

They wanted us to go to Salt Lake City because that’s where my original oncologist was, but it worked out better in Denver because my parents were there. They could watch the kids.

The need for more support

We knew it was going to be most of the summer of 1998. My husband had just gotten a job. We had just moved recently from Rock Springs or from Evanston to Rock Springs. He was new to his position. 

They made it so nice for him. They donated sick leave. All over the state, they donated sick leaves. He was able to come and be with me during the entire transplant, which was 30 days in the hospital.

Autologous Stem Cell Transplant

Describe going through the stem cell transplant process

We went to the University of Colorado and that’s where I had my stem cell transplant. They had no problem getting enough cells for that.

It was a really, really hard time. Basically, they kill your bone marrow until it’s basically nothing so that they can restart it. 

I was very, very sick. Thank goodness they give you medications so that the patient doesn’t remember a lot of the things.

My husband had to watch the whole thing and he remembers all of it, but I don’t remember a lot of it.

What was the day to day like in the hospital?

It was really cool. I was in a study and there were three things that you could randomly be picked for. One was a friendly visitor, music therapy, or a massage. I got a massage! That was really cool that I got to do that, but I remember I had to journal in this book for that massage study. The first few days were really coherent and I could read my writing and I was saying things that were happening.

Then as it went through, it just became just this scribbling and you could not read a word of it. The lady’s like, “Well, it’s pretty typical because you’re just so sick and you’re just barely hanging on in some ways.” 

It was a difficult time. It was all in the hospital where anybody came to visit, you had to gown up and be germ-free as much as possible.

We had a lot of visitors. We had different people coming in to show their support, which was really great, but it was a difficult time. 

How was the recovery from the SCT?

I had to be there a month before the transplant to get the cells and then a month after for just making sure I’m okay to go home. We spent the whole summer of ’98 in Denver in my mom’s house or at the hospital. 

It was a big deal, but boy, I came out of it great. After about a year, it took about a year where I wasn’t feeling sick all the time and building my strength back.

How was dealing with all the travel for transplant follow-up?

When we lived in Rock Springs, I was going back every three months, and it was difficult because they were doing just extensive testing every time. I would have to take the kids out of school, well, my daughter was in school, we homeschooled her for kindergarten, and then we put her in school for second grade. We took her out of school for two weeks each time.

Every three months, we go to Denver for two weeks. They do a bunch of testing, a day’s worth, we stay there, and then we have to go back for the results and different things like that. That was a hard time just getting through that and going up every three months. 

Then, once they realized that I was doing great and that the stem cell transplant seemed to have worked, I went every six months. 

Moving to a Bigger Town

Then we moved to Cheyenne, Wyoming, which was a lot closer to Denver, which was nice. I was going about every six months, and then they released me to just a local oncologist in Cheyenne, where they have oncologists, which was nice. I did a six-month checkup then with that oncologist there in Cheyenne for many years, and I worked.

I lived a normal life. I felt great. I was exercising. I was doing everything that a mom does for her kids growing up.

They were getting older and in junior high in high school by then. It was just like, “Hey maybe I’m in remission forever.” 

They had told me, “Give us 10 years, and we’ll maybe have a cure by then.” That didn’t really happen but, boy, I had a long time where I could just live my life, so it was nice.

How did you manage the stress of a having a possible relapse?

It was difficult, because every time we go to the doctor, it was like, “Okay, is it back?” Even though they said give us 10 years, they also said, 99% it will come back.

Each time we’d go, we have this dark cloud over our heads thinking, “Is this the time when it’s going to come back?”

It was hard because I was always feeling pains. What is this pain? What is this pain?

It was just always a mind thing where I was just dealing with that all the time. I guess, for us, we just have a tremendous faith in God, and that’s the biggest thing that helped us was just to have trust in Him and know that He has the best plan for me. 

We just went that way along the whole journey, and I’m just so thankful for that because I don’t know how I would have done it without that in my life.

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