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Moving Forward After a CLL Diagnosis

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Published on February 4, 2020

Key Takeaways

  • People often have feelings of depression, fear and doubt after diagnosis.
  • Finding your own individual spirituality and what life means to you can be an important part of healing.

Chronic lymphocytic leukemia patient advocate Jay Connolly and Christian life coach Pat Weatherspoon-Hall discuss the emotional impact of being diagnosed with a chronic cancer. Jay shares how his CLL diagnosis affected him physically, emotionally and spiritually, and how he changed his outlook to be more optimistic about the future. Pat also gives her perspective on finding meaning and hope in a difficult time, coping with CLL and deciding how you’re going to live your life. Watch now to hear their expert perspectives.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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Transcript | Moving Forward After a CLL Diagnosis

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.

Jay Connolly:              

My name is Jay Connolly and I live on Vancouver Island on the far west coast of Canada, and I had a bit of discomfort on my left side in 2011. I was about to go on a holiday to Colorado, so I went to my GP and he was quite concerned through some blood and told me a few days later that I had either lymphoma or leukemia. I then went quite quickly through a series of further tests with a hematologist and was diagnosed with stage IV chronic lymphocytic leukemia in July. 

Jeff Folloder:              

And how’d that go over?

Jay Connolly:              

Well, it was terrifying. I was absolutely terrified. I was raised with traditional sort of male values, and I hadn’t wept for many years, and I went home and I was surprised, but there was just this release of tremendous grief. Both my wife and I felt this. It was just devastating, and the word cancer—we’ve all dealt with lots of people and lots of sadness around this condition in its many forms and so I just sort of emotionally collapsed. I wouldn’t say I felt depressed, but I always refer to it as a mild depression, and that mild depression probably lasted a whole year, because I did not have any hope at first.

I wanted to be a good patient and cause as little trouble, and I didn’t want to go through the stages of grieving, so I just tried to jump straight to acceptance. And to me that meant that I just had to allow the disease to run its course. I mean, of course, I was going to be treated; I just didn’t think the treatment would be particularly effective. I had a couple of negative markers, so I just looked at this as a very limited future and I thought it was the manly thing to do to accept that limited future and just sort of ride it out.

And it was when I was having chemo that the—my first session was a very difficult six or seven-hour affair, and they had to keep pumping me full of Benadryl and Tylenol to keep the allergic reactions in check. And I had the rigor all day long, and I was exhausted by the end of it. It wasn’t six hours; it was nine hours. It was 9:00 in the morning until 6:00 at night, and it was supposed to take a couple of hours, but because of my reactions it took so much longer. And the chemo nurse, at one point, looked up at me and she said, “I know this is hard, but it just means it’s working,” and I just kind of began to sob.

And it was in that moment when I finally allowed myself to hope, to think, “Hey, maybe there’s a way through this. Maybe it’s working and maybe this is going to—maybe this treatment is going to be very successful.” And I had been reading things about ibrutinib (Imbruvica), and I had been reading about CAR-T therapy, which was just in its infancy at the time, and I started to think, “Well, you never know. This treatment’s working, and maybe there’ll be another treatment. I mean, I know there will be another treatment when the time comes.”

And so ever since that moment, my whole approach has been about hope. I’m aware that any number of bad turns could occur, but I’m also aware that there’s some possibility that I could live to be an old man. And so, really, that’s the way I approach it is that that’s my intention, and I understand that there are any number of factors that could change that, but I choose to be as optimistic as I can and as hopeful as I can day to day. And I really try to kind of propagate that attitude with everybody I deal with.

I’m a teacher, and so kids help me with the whole notion of hope, because they’re all about the optimism for the future and they can look around and see any number of obstacles in their lives, but they choose hope, and so that’s what I do.

Jeff Folloder:                 

I was thinking about how I dealt with my initial diagnosis and my run up to treatment as it were. And like Jay said, you have typical male response. You get your cancer diagnosis, if you’re a type A personality, you take charge and everything becomes a punch list of things that you have to check off, things that you have to do, things that you have to make happen, and you have to take care of everything, and you’re not allowed to let go.

I know from your work that getting people to understand what’s going on and to allow themselves to be healed, it’s an important breakthrough. It’s a breakthrough that each of us has to go through. Tell us how you help people get to that point of letting go and becoming connected to what’s going on.

Pat Weatherspoon:       

Right, right. So, for me when I’m working with either a client or someone who’s going through a diagnosis or even a caregiver, it is, first of all, what is it that they are wanting to gain out of the situation? We’re talking about hope and spirituality, and I believe we all are spiritual beings. Now, with that being said, a lot of people connect spirituality and religion and Christianity. I happen to believe in Christianity, whereas someone else may believe their spirituality is in the universe.

So, we all believe in something that offers that hope for us. We’re all—when we are diagnosed with an illness or something that’s detrimental to us, we start thinking about our meaning—meaning of life. Where are we going? How are we going to get there? Different aspects such as those, and where I come in is that I come in and help them reach those goals. If they want to – you’re diagnosed with cancer and so you want to beat the cancer. You want to have hope, and so what does that hope look like? And that’s where I come in.

Some people go to meditation. Some people have that release, and I know my husband has also talked about that. Growing up as a male, you don’t get to get that release, but crying is cathartic. It releases tensions, and so when you’re searching for spirituality, releasing that tension, finding hope, finding what life means to you, and how you’re going to live the rest of your life in dealing with a chronic illness.

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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