Living with Multiple Myeloma | The Patient Story

Living with Multiple Myeloma

Beth’s Story (Pt. 5)

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 impact of the myeloma on her life, including how she decided to retire from work and learning how to accept support from others. She also dives into the importance of participating in clinical trials and in sharing her story, to help heal herself and hopefully others who are looking for some connection.

Thank you for sharing your story, Beth!

  • Relapse:
    • Age: 45 years old
    • Symptoms:
      • Extreme pain in ribs and head
      • Light chain #s up
    • Treatment:
      • Radiation (193 sessions total over seven years)
      • Chemotherapy (9 regimens since beginning), mainly:
        • Velcade [bortezomib], Cytoxan [cyclophosphamide] and Decadron [dexamethasone]
      • Different drug combinations
        • Elotuzumab (Empliciti)
        • Belantamab mafodotin (BLENREP)
        • Selinexor (XPOVIO)+ bortezomib (Velcade) + dexamethasone

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.

Quality of Life Impact

The decision to retire from work

It’s been hard in a lot of ways. I had to retire from teaching. I think that was one of the hardest things because I just felt like I can do this. I was working 50 to 60 hours a week as a teacher.

It took me so much longer to do anything because I was tired, I was weak, I was experiencing different side effects throughout different therapies.

That was really difficult to make that decision to say, “You know what? I can’t work anymore. We’re going to have to figure this out financially,” because cancer is so expensive.

I’ve just been thinking a lot about how many cancer patients feel like they have to work because they have to keep their insurance. They have to have money to pay for treatments. It just amazes me to think what people have to do to even get treated.

Thank goodness I have good insurance and we were able to get on long-term disability through my school district, so I was able to stop working, but that was probably one of the hardest decisions that we had to make because I loved teaching and it made me feel like I was normal, like I was doing something like every person does.

I felt like I was contributing to the family for so long. Even during my remission time, after my transplant, I did some work. It was like tutoring and substitute teaching, those kinds of things.

I just didn’t feel like I was really contributing to the family, but once I got my own classroom and I was teaching, I just really felt like I helped. It just felt like for so long I was pulling resources away from our family because of cancer, we were traveling so much. 

You just make different decisions financially than you would if you didn’t have cancer. We spent money where we shouldn’t have. We made a lot of bad decisions too, but anyway, I just think those are the things that just have been the hardest for us, traveling through this journey. I guess that’s what I have to say about that.

Guidance to others on getting support paying for treatment

I think the biggest thing is to be in communication with your supervisors and administrators. For so long, I just tried to do it on my own, do it on my own, do it on my own. I tried to act like there was nothing going on with me. 

Finally, I just had to because I was taking time away from work. I was leaving for treatment 15 minutes early. I had to run to my car before the bell rings so that I could get out of the parking lot before the parents started moving and people had to cover my class. 

There were times where I was doing six to eight-hour treatments. I’d have to take the day off, find a substitute, write sub plans, all of these things that were so hard to do while I was doing treatment, but I just did them anyway.

I just would ask for the time off or ask for help finding coverage, or whatever, but I didn’t really share what I was really going through. I think once I started doing that, and it doesn’t happen in every situation, but in my case, my administrator was really helpful and worked it out so I wouldn’t necessarily have to take all my sick leave, all the time when I was leaving just 15 minutes early or whatever. She would work it out so that I could come in earlier, do this or that, so that I could cover that.

She helped me get some accommodations to the district. I was allowed to sit while teaching because that was a rule in our district that you need to stand while you teach, and I just couldn’t all the time. I found an accommodation where I could sit while I was teaching, I could have my oxygen in my classroom, I could have people help me take my kids [around].

I didn’t have to walk across the building all the time on days if I wasn’t feeling well, those kinds of things where if I hadn’t been in communication, I wouldn’t have been able to get that kind of help through her.

When I was thinking about retiring and quitting, they were really helpful with what’s the best thing to do:

  • Is it best to just quit?
  • Is it best to retire?
  • How do you apply for long-term disability?
    • Is that an option for me?
    • What are the steps?

She put me with the right people.

Finding resources to help navigate these life with cancer questions

I think communication is the biggest thing. Also, I talked about it before, it’s helpful to just to ask, “What are the things, what are the resources that I have to help me go through this?”

Most people are so kind and willing to help.

I am on some myeloma pages on Facebook, and a few people have talked about how it’s been really difficult in their job situations, dealing with their administrators and things like that.

It’s just a hard decision. Do you leave your workplace? Do you go and try to find something that you could do at home or less physical?

There are just so many options. I know that people need to still work and still have insurance, but there are options out there. You’ve just got to research and ask. You have got to follow up on things. It’s hard to because I feel like that’s a full-time job. 

For a while it was a full-time job, just scheduling appointments, and trying to find coverage for my position at work, and all of those things. Then there was calling all these places asking about whether I could do long term disability, all those things, and it’s just like having a whole other job. It’s hard. It’s really hard.

Support and acceptance

How important is it to have a caregiver through treatment?

I’ll tell you, I have the best caregiver on the planet. My husband, he does everything for me.

Sometimes stairs are really difficult for me to navigate because of some dizziness and some just weakness, so he does all the laundry, he cleans the house, he does the cooking, he just takes care of me. 

Especially when I was teaching, he just had decided, “She has to go through this and treatment and work these 50 to 60 hours a week, so I’m going to do everything else, plus my 40-hour week job to take care of her, and all she has to concentrate is getting well.”

He was working at that time, and even though I’m not working, he still does pretty much everything for me.

I’m really blessed with that and I know that’s not everybody else’s experience all the time.

Sometimes that has caused us to not accept help outside of our little two-person family, now that our kids are gone. I think we could do better at that.

Accepting support from others

There are people at our church and at school who wanted to help more, bring meals sometimes. Or, we had some people help us when we were moving, give us extra help in cleaning the house that normally I would have done that I couldn’t do.

It’s so hard to accept someone’s help, but they really want to find some way to help you. Giving them that opportunity is really a blessing to them.

We’ve really realized the value in giving other people the opportunity to help. We don’t have family here, it’s just us, and well, now my mom is here, but she’s 83.

It’s an interesting thing. She helps me. It’s funny. The other day we went to the grocery store and she’s holding onto my arm because I’m probably going to get dizzy.

She’s this 83-year-old woman, all these people are probably thinking, “Oh, that’s so nice that her daughter is helping her along the parking lot,” but it’s really her helping me. That kind of support and some emotional support are important.

Different styles of support from family members

My daughter really struggles with it. She still doesn’t like to talk about it a lot. She likes to hear what is happening as far as tell her just the nuts and bolts, but we don’t really want to talk about it too much. She was really affected when she was five with that whole thing, and then on and on and on for her whole life. 

We’re still working on some of that with her, but I think we’re at an okay place where I feel like if I really needed to talk to her about something, I could.

My son is all over it. He loves to talk about it. He’ll ask me lots of questions, those kinds of things.

It’s hard sometimes to just accept help and support, but we try.

Clinical Trials

Would you ever participate in a clinical trial for myeloma drug research?

I don’t know a ton about it because I’ve never done one, but when I’m on those pages with all those myeloma people on Facebook, they talk about it a lot. They talk about, “Please do the clinical trials if you can.”

I think it’s really important. I would love to be able to do them when we come to that place where I really don’t have a lot more options, but I did hear from someone that being non-secretory could make it difficult. That might exclude me from a lot of different clinical trials. We really have to look into it and see what the exclusions are and see what happens with that, but yes.

I’m all for it. I think if patients can do it, they should do it.

Dealing with the logistics of participating in a trial

I know that it can be expensive. For me, it would be really expensive because we live in a small town in Wyoming and we’d have to travel somewhere to do it most likely.

That’s a real problem for us. I mean, right now we could probably do it better than we could 10 years ago, but there are a lot of considerations like that, that patients have to walk through. 

There’s a lot of testing. There’s a lot of that kind of thing. It’s not an easy decision to make, but I think that it’s so important if we can get these things out on the market for patients, for the wide audience that needs it.

Living with Multiple Myeloma

Finding purpose in helping other myeloma patients and caregivers

It’s been just a crazy year. All these opportunities to share my story have come up. I’m just so grateful for that because I think sharing your story, for me at least, it helps me to process what I’ve been through.

It helps me remember because I think it’s important to remember what we’ve been through. It helps you make decisions in the future and it just helps you to give yourself some grace. 

I don’t give myself grace very often as far as when I feel bad or tired or anything. I think, “Ugh, I’ve got to feel better. I gotta get up and do stuff. I got to push through this.”

Then if I tell my story, I think, “You know what? You’ve been through a lot. This is okay to feel this way, this day.”

Reconciling being a cancer patient and not “looking sick”

I think we just are hard on ourselves and we don’t let ourselves be sick, and especially myeloma patients because we don’t look sick. We don’t often show that we’re sick.

I look like I’m not sick. It’s really hard to balance that with “I am sick” and “I need to be able to take care of myself and I need to not push it too much and I have to give myself some grace.” 

I think that’s one of the biggest things, and just to be in good communication with your doctors, and like we talked before, just be an advocate for yourself and not be a pushy, annoying patient.

Sometimes you have to be, but just do what you have to do and be in communication and conversation about it and ask a lot of questions. Do research, but be careful where you’re doing your research. Make sure that you’re looking in good places that have real information.

This is another thing that I think has been one of our biggest things we’ve dealt with is there’s so many people that want to help and they have good intentions. I’ve been told I need to take this supplement or read this book or do this thing. We were told to do coffee enemas. We were told to take curcumin, which is proven actually to help some people with myeloma. We had someone tell us, “Don’t talk about it. Don’t put anything negative out into the universe and your cancer will be healed.” Those kinds of things.

We’ve had difficult situations like that and I think that’s a hard thing to wade through because you want these miracle cures to work. People are always saying, “They’re going to work. They’re going to work.” Often they don’t work.

You have to wade through that and you have to decide, are you going to change your diet? Are you going to take supplements, whatever it is? It may help you, it may not help you. That’s a difficult thing that we’ve had to wade through.

We’ve had some difficult relationship issues with that where people are upset because we won’t do what they want us to do. “Oh, you’re going to be healed if you do this.” We’ve chosen to do the traditional medicine type thing mostly. I do some things natural like for side effects and things like that.

As far as treatment for myeloma, we’re doing all traditional medicine, but other people have other choices. It’s a big thing that people have to wade through. I think it’s tiring and I think it’s hard.

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