Cancer and Couples: What Will a CLL Diagnosis Mean for My Relationship?

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Topics include: Understanding and Patient Stories

How do people adjust to life with cancer as a couple?During this Patient Café, Patient Power founders Andrew and Esther Schorr are joined by a panel of chronic lymphocytic leukemia (CLL) patients, including Michele Nadeem-Baker, Jeff Brochstein and Jeff Folloder, to explore how a cancer diagnosis can impact a relationship with a significant other, spouse or partner. The panel shares how they faced a CLL diagnosis with their partner at different stages in their relationship; while dating, through marriage, couples therapy and having children. Watch now to hear their personal experiences.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.

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Transcript

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.

Esther Schorr:

Jeff Brochstein:

Thank you.  

So, you know, I think if anything it just solidified my dedication to our relationship and to figuring out the best way to support you emotionally and physically and professionally. So, yeah, you know, all of you have been talking about sort of there's this weird silver lining of having a diagnosis of something.  The silver lining is you look at what you're really grateful for.  And that's really what it did for me as a care partner to you, Andrew.  To say, okay, this ain't good, but what's the good stuff that we can do if we work together, and that's really what's happened.  

We did, and that was very, very helpful so that I was able to communicate with you openly and you weren't afraid to tell me when you had feelings, whether they were of fear or trepidation or not knowing how I was going to react.  It took a long time for us to figure that out.  I think we have.  

When the first doctor that I had seen that had given me the diagnosis described the treatment plan he wanted to do, I did a typical type A personality thing and said stop, went and talked with Dr. Google for an awful long time and decided that I needed a second opinion right then and there.  

And one of the watershed moments of my treatment journey was when we were sitting in that clinic room at MD Anderson when my doctor, not me, but to my wife walked over, picked her up out of the chair and gave her a bear hug to let her know that she's a part of this process as well.  It's not just about me.  And that was sort of a little bit of a release from the pressure valve because this is very much a team journey.  I can't even begin to imagine someone with CLL going through it by themselves, so I am extremely grateful to my beautiful bride of 31 years, and I could not have gotten to this day without her, period.   

In the beginning I tried to protect my husband from things, and as I was living in Florida and he was in Massachusetts I considered not even telling him.  In the first 24 hours, you know, your mind does crazy things.  He was not with me, because I didn't even know there was anything wrong with me when I was told, and I even considered for him ending the marriage because it wasn't fair to him.  This all went through—crazy things go through your mind. So I didn't think it was fair to him, and his first wife had cancer.  So the mind goes to crazy places.  

Thankfully I did not.  I shared, and he has been—he has been by my side every step of the way probably much to his own physical health detriment, which is on track now.  But he sacrificed a lot.  He has been with me for every appointment.  Every treatment he was by my side, every bone marrow biopsy.  And thanks to him they redid some of mi tests which showed my genetic markers which they were not aware of as to how serious my CLL was.  

He had read about that things could mutate or that tests only test a certain percentage of your blood and that perhaps it was different, and my symptoms were becoming more apparent that I was getting closer to treatment even though other things, other numbers did not show that through my FISH tests, my flow cytometry test.  So he pushed them to redo the tests, and lo and behold, I was 11q, and they didn't realize that.  And IGHV they had known unmutated, but they didn't realize the 11q. So I do suggest that people if they start seeing certain symptoms they do push for certain things, but my husband did that.  I didn't. I would not have pushed for that myself, so thank goodness I had a partner along the way, and I don't think I could have done everything I did to be here today.  

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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Page last updated on March 28, 2019