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Family and Myeloma: Balancing Life During Treatment

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Published on September 22, 2017

A myeloma diagnosis does more than disrupt your daily routine, as it brings many challenges and requires patients to adopt a â??new normal.â?? During this Patient Café, patient advocate and mentor, Cynthia Chimielewski, talks with fellow cancer survivor, Kathy Cartwright, as they share how they combatted the challenges that accompany living with myeloma, learned to enjoy life again, and maintained spending quality time with family.

Produced by the Patient Empowerment Network. We thank AbbVie and Takeda for their support.

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Transcript | Family and Myeloma: Balancing Life During Treatment

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. 

Cynthia Chmielewski:

For the longest time, I thought my cancer had to be completely gone, I had to be in a complete remission before my life could continue, and that wasn't happening to me.  If I was still—if I had to wait for that I'd still be waiting, because I've never had that complete remission, and that soon—I realized I could continue living my life and living a full life and still have cancer.  But it took a while. 

How about you, Kathy? 

Kathy Cartwright:

Yeah, I've never had a full remission.  Even though I was chemo?free, I've never had a full remission.  I've always been checked.  So I travel for my care, so that became a huge—I don't want to say a financial burden, but it was.  You know, at one point I was thinking I've got these small children, I want to go on vacation with them, but now we don't have money to do that, because I've got to fly to the Mayo Clinic.  I have to—and, you know, it was our choice because we wanted me to live longer, so I was never blaming anyone.  I always just tried to focus on the better things all the time, because it was a wakeup call.  

You know, I mean, I was rushing through life with two kids.  We were doing what every American family was doing, you know?  Getting our kids through school good.  Doing a vacation once a year, you know, blah, blah, blah.  And all of a sudden it was whoa, stop, smell the roses, like you said.  

And I remember right after I was diagnosed, we were very honest with our children, and I can remember my son worried because there were two other moms in our—home room moms in his class, one had colon cancer, one had breast cancer, and both of them had died.  Right after I was diagnosed, it was like three weeks later one died, three weeks—so our son moved into the room, and he laid next to me and held my hand the whole time.  And we had to keep telling him, I'm not going to die, I'm not going to.  So as much as we're telling him, oh, I'm not going to die, you know, it's in the back of your head that, oh, I've got myeloma. 

There's no—you know, back in 2001 it was basically, I mean they handed me a hospice book, and I thought you're handing me the wrong thing.  And so it changed my life, because we had to get positive.  We had two kids in the house.  I was the host with cancer, but my whole family had it.  And so we put a swimming pool in, because we like to swim, and I couldn't swim in public anymore.  My daughter said to me, you know, we used to be a fun household, Mom.  Are we going to—is it going to be fun again?  And I thought, darn it.  It is going to be fun. 

And we just said, you know what, kids, we're going to be honest with you, but these are the things we're going to do, and we just kind of like brought it in—it didn't define us, but it was another thing as a family you have to deal with, and we're going to go forward, you know?  What is it?  You know, pull up those bootstraps and carry on. 

And the kids, my neighbors, a couple of them and then the teachers I worked with, everybody came to bat to help with the kids, with like their sports and stuff.  If I had to go to Mayo, you know, we had moms that had volunteered to do things.  Teachers have volunteered to help my children in school.  Understand your mom's at Mayo this weekend.  You're going to have a great time when she comes back, blah, blah, blah. 

Because we tried to make trips out of things too.  When they were on spring break we would take them to Mayo, then we'd go from Mayo up and go skiing or something, and you know, go to Canada or—so in one way, you know, yeah, it was a burden, but in another it made us slow down and do just more as a family. 

Everything was cherished in a blown?up way.  We appreciated so much more of everything, even the little stuff and just kind of let go the little stuff that doesn't matter.  And I think there's positives that way.  And then, of course, the negative is yeah, we were a young couple, thinking, gosh, this money, we could do this with it.  You know what?  It doesn't even matter anymore.  I'm 16 years, you know.  I just saw my daughter get married.  I wasn't supposed to see her get out of junior high, so—yeah, those things choke you up, you know? 

Cynthia Chmielewski:

Right.

Kathy Cartwright:

They are the things that change your lives. 

Cynthia Chmielewski:

Right. We don't sweat the small stuff anymore. 

Kathy Cartwright:

That's right. 

Cynthia Chmielewski:

Right?  We know what matters to us and cherish what matters.

Kathy Cartwright: 

Exactly.

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. 

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