You Can Live and Live Well with Myeloma

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Topics include: Living Well

Cheryl Boyce shares her story of living well with myeloma over the last 13 years. Cheryl and Russell, her husband of 37 years, talk about their journey with myeloma and how Cheryl does not let the disease control her life.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Cheryl, you have been living with this now for 13 years? 

Cheryl:

Yes. 

Andrew Schorr:

What would you say to somebody about the long journey with myeloma?  You’re doing well now.  People are diagnosed, they think this is the end. 

Cheryl:

Well, first of all I’m thankful that it’s been a long journey.  I’m very grateful that I’m here.  The initial diagnosis, like so many other people, I was stunned and really thought that with myeloma I couldn’t live very long, let alone very well.  I’m really pleased that it’s been a long journey, and I look forward to it being a longer journey. 

The ups and downs of myeloma make me very grateful for things that you take for granted.  I study, I read, but I try not to let the disease control my life.  It’s just another thing that’s in my life that I’m very aware of, but I still try to live my life the way that I lived it prior to myeloma. 

Andrew Schorr:

But it is not a walk in the park. 

Cheryl:

No, it isn’t.  The experience is very different for everybody, but myeloma is—I’m respectful of it.  I know that I need to stay on top of my game, I need to be concerned about my health, I need to keep on top of developments because it seems like things are now really moving in terms of the research, but I always say it is not a disease for the faint of heart. 

Andrew Schorr:

Russ, you’ve been married how many years now? 

Russell: 

37. 

Andrew Schorr:

37 years.  You’ve been by her side a long time, and there have been ups and downs along the way.  What’s it been like for you as a spouse, and what would you say to other spouses? 

Russell: 

Well, when she was initially diagnosed she was pretty depressed, and rather than sit and mope, the first doctor that we had said, ‘well, you have myeloma, it’s smoldering, it’s really not bad enough to do anything right now.  When it goes full blown I’ll give you some drugs’, basically.  And I said, that doesn’t sound right.  Let’s get a second opinion, okay?

I think the worst thing you can do is just sit and mope and do nothing.  Both of us had healthcare backgrounds, I knew she was kind of depressed at the time, but I knew that we needed to do something about it.  We went and saw a second oncologist, and within a week we were on the road to Cleveland Clinic to start a bone marrow transplant. 

Andrew Schorr:

Now, Cheryl, the incidence of myeloma, not a common disease, is still higher in the African-American community.  People get diagnosed with something they’ve never heard about, they go to the doctor, and they think, well, that’s what the doctor said.  You’ve learned to be a strong advocate.  What would you say to people? 

Cheryl:

I would say that once you get over the initial deer-in-the-headlight experience, exactly what Russell said, that first you have to ferret out what it is, and the literature still, in my estimation, is not that good, and even though the incidence is higher in the community it’s hard to find people who have this disease, although at some point when you mention it everybody knows somebody with it. 

But I think finding a doctor and a medical facility you feel comfortable with also helps because there’s not a road map for myeloma, and so you have to read, not become so overwhelmed with the information but try to ferret out which direction to go and find a medical professional that you can be in partnership with who, in conjunction with yourself and/or your family, will help you cut through some of the material, to ferret out what you need to do. 

But like Russell said, with this disease I think that everybody needs to be really proactive in terms of seeking that information and finding other people.  With more of the group that I work with here in Columbus we’ve been doing sessions in the African-American community because again, it’s one of those diseases that people say it’s rare but everybody knows somebody with it.  I’m finding when we talk about it that there’s a whole community of sharing that we can use as support systems, as information networks, but we’re going to have to be aggressive about this. 

I think in the African-American community we too often share the bad news, we don’t often share the good news, and that if we talk about this more we will find a natural network of people that will form not only an advocacy network but will fortify us as individuals advocating for ourselves. 

Andrew Schorr:

How do you feel about the future? 

Cheryl:

I’m optimistic.  This is going to sound really weird, but some of the best things that have happened in my life professionally and personally, they’ve happened during the time I had myeloma.  And I’m not sure if it was because of myeloma, but, like I said, I have a heightened sense of awareness about the fact that I love life.  I love living life.  I’ve started my own business, I’m traveling.  I’m doing probably more things than I would have done before. 

I was talking to someone on your staff.  We go to Jamaica every year now.  I can’t stand winter, so we go and escape and have a good time.  We value our lives far more, I think, because of the myeloma, and it’s opened doors that I don’t think I would have even tried to go through had it not been for it.  I don’t cheer it, and I certainly don’t celebrate having it, but I’m not going to be held back because of it, either. 

Russell: 

Initially, I guess she contracted the disease about a year before our daughter was graduating from college, and she just wanted to live to see her graduate, and it’s 13 years later now. 

Cheryl:

So people can live and live well with myeloma. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


Page last updated on December 19, 2013