Mark: Before we even married, I called Sherry my "little brother," because no matter what I did, and I did a lot of stuff with the guys, Sherry wanted to tag along.
Sherry: I love any kind of sports activity -- snow skiing, fishing, scuba diving.
Mark: So, we were pretty inseparable. Where we are now, and part of it's an aging process and I think part of it is some of the challenges that we've had with the CTCL, is that we're always redesigning our interests and what we find satisfying.
Mark: There's one right there.
Mark: Right there. About 2 o'clock. When you get the diagnosis of cancer and it's someone you love, it really overwhelms you. And you realize that, "Wow, my life's never going to be the same again." Being a caregiver is a privileged place, and it takes focus.
Sherry: If I were to give some advice to a caregiver, is that CTCL is very disfiguring, and remember who that person really is deep inside.
Mark: I was trying to run a business, be a caregiver in another town with a sick wife, and raise my children.
Sherry: Ask for help. Ask your caregiver and be real specific. Tell them what you need from them. And be patient, because that CTCL patient is miserable.
Mark: Sherry had major involvement requiring skin wraps, daily injections and catheter-cares. Those are things that a caregiver does on a daily basis.
Sherry: It not only looks bad, but you just feel awful. The itching is so intense.
Mark: And, boy, you had your two feet in a lot of different ponds, but you can do it.
Sherry: When we were training for the triathlon, we'd come out here at 7am and swim along the beach here.
Mark: As I say, it's a privileged place. And it's a celebration ... I mean, boy, when you get the results that you hope for, and they do come, there's not a higher high.
Sherry: The celebration could just be on my lab work, maybe one of the numbers improved. That's a celebration.
Mark: Yeah. It was a huge celebration...when she was initially diagnosed and we were watching these declining lab results, a clinical picture that was deteriorating quickly. Finally, the labs stabilized, and it's like, that was a huge celebration. We're out of the free-fall, and now maybe we can start climbing out of it.
Sherry: Yeah. The treatments started working, and...
Mark: That was a wonderful feeling.
Sherry: We started seeing some results.
Mark: CTCL was not a death sentence for Sherry. It had a lot of hope; it had a lot of personal growth, challenges.
Sherry: And it affected our daughters in such a positive way. Like I said, you know, we all got cancer.
Mark: And I had to make the decision as to, "Wow, if Sherry's not here, what's that going to do to the family?" And so, I took a bigger presence in my kids' life.
Sherry: It was a lot of tough times that, when I look at our daughters today -- they're 28 and 26 -- at the time at diagnosis they were 9 and 11. And they are incredibly strong women because of it. They've been dealt a pretty tough hand, and there's nothing that they can't handle.
Mark: Our girls have left. They're making their own lives out in Colorado. Sherry and I are continuing through ours.
Mark: I think right now, with some of Sherry's challenges, she's not able to be quite the little brother she has been, and I'm becoming more of a kitchen person. I work in the garden. I cleaned the garage last weekend. And these are things I find enjoyable. It's scary. I continue to like to dive and fish and be outdoors. Sherry does, too.
Sherry: We like the water, and so, boating has always been important to us. And Mark can still dive. I'm unable to right now, but we still like to boat, and I guess fishing is #1 on the boat for me right now.
Mark: And she catches fish. I don't. I set the lines out big-time. That's what a team's about. When you look back at a huge challenge that has been met and has been successful, you feel satisfied, and CTCL and Sherry's experience has given us many moments like that. Would I wish it on anyone? Absolutely not. It's not something I wish to revisit or try to reexperience. I don't think we would have done as well as a couple if we didn't have these challenges.
Sherry: And it gave us one-on-one time together that I probably never would have had had I not had the disease.
Mark: That's where we are today. The next chapter is just being started. We're not so sure where it leads, and we're very hopeful and excited about the future.
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See top Opinion Leaders address FAQs about THERAKOS™ Photopheresis
Methoxsalen Sterile Solution is indicated for extracorporeal administration with the THERAKOS™ UVAR XTS® or THERAKOS™ CELLEX® Photopheresis System in the palliative treatment of the skin manifestations of cutaneous T-cell lymphoma (CTCL) that is unresponsive to other forms of treatment.
Methoxsalen is not appropriate for patients who have had a reaction to psoralen compounds, patients who have had a light sensitive disease, or patients with an absence of one or both lenses of the eye.
THERAKOS™ Photopheresis is not appropriate for patients who cannot tolerate blood volume changes or patients with blood clotting disorders. See Important Safety Information for additional details.