Being on the water is always such a happy place for me, and going through the difficult times, a lot of times I would meditate and go back there -- go back to being on the water. I just look at things differently now -- the sky's bluer and I just appreciate being able to do that again. There were times that I didn't think that I would be able to do that again.
My symptoms first started in the winter of '93. I was 37 years old at the time, and I started getting blisters ... various places on my body. And each day it was like there was something new on that body. I had red raised areas all over my body. I had night sweats. My hair began falling out. And then the itching started. And the itching felt like it was biting from the inside-out.
It took about eight months for them to finally diagnose me, and during that time it was very frustrating. It's a very rare disease. I had CTCL with Sezary, and not knowing what it was, I went to dermatologists and internists and all kinds of different doctors.
I was misdiagnosed several times with mononucleosis and psoriasis, and so finally after I saw most of the local doctors, I knew I had to go elsewhere.
When you get a diagnosis of cancer, it's not just you that gets the cancer. Your entire family gets the cancer. It affects everyone. It affects your friends, too.
The girls were 9 and 11 at the time, and I didn't think that they would understand what cancer was or knew what it was.
So, what I found out is that if you don't tell them exactly what is going on, that they make it up in their minds, and I began rearranging my life at that point 'cause I knew I had to travel to Houston for treatments.
Sherry: The CTCL was very disfiguring for me, and the itch was just incredible. And I can remember trying to sleep was impossible, and I can remember being out in Houston and things didn't look good for a while, and Mark brought the girls out to see me, and basically to tell me "goodbye," and they didn't think I was going to make it.
And I can remember Kelly, who was 9 at the time, wanted to crawl in bed with me, and Katie was 11 and she was so angry. And I felt like I let her down, and she stood in the corner of the hospital room and wouldn't come near me.
I went to a comprehensive cancer center where we looked at all the possibilities, and we chose photophoresis because it enhances your immune system rather than break it down, and we felt that was the best option at the time. And there's a lot of options available for CTCL and Sezary, and I found out that it's not a one-size-fits-all. What didn't work for me may work for you.
With the photophoresis, it's a relatively easy treatment. You lay there and they take out your blood and process it, and I went from being Stage IV CTCL Sezary, covered with lesions and blisters, and just awful itching, to clear skin and no itching.
During all this time, the treatments, the disease really consumed my life. And as I got better I was able to resume some activities. And even during all this time, after a few years, I even completed two triathlons and a mini-marathon. So, my life got somewhat back to normal. "Normal" had a new meaning.
You have to be patient with the process and trust the process, because it took about three months for me to start to see a difference, and at first it showed up on my lab work, and then it showed up on my skin. So do your own research. Knowledge of the disease and the treatments are most important. And know your options that are available.
Don't own the disease. It's not your disease; it's the disease that you have. Don't own it and say, "My disease." And treat it as an invader, as a temporary guest.
As dreadful as the disease can be, there's a lot of positives that can come out of it, and it brought us together closer as a family, and also closer to our friends.
Well, we all have "get-to's" and "have-to's" in our life. You get to go on vacation and you get to do the fun things in your life, but then there's the "have-to's" where you have to go to work or do laundry, or whatever it is. And when everything is taken away from you, all I could do is lay there. I couldn't even feed myself.
As I was able to do more, everything became a "get-to." I didn't have any "have-to's" in my life. It's a pleasure doing everything now. I'm lucky to be able to do it.
Sherry Anderson fought CTCL for 12 years. She has been cancer-free since 2005.
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Indications
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 should be used only by physicians who have special training in the THERAKOS™ UVAR XTS® or THERAKOS™ CELLEX® Photopheresis Systems. Methoxsalen is contraindicated in patients exhibiting idiosyncratic reactions to psoralen compounds, patients with a specific history of a light sensitive disease, or patients with aphakia.
THERAKOS™ Photopheresis is not appropriate for patients who cannot tolerate extracorporeal volume loss or shifts, or patients with coagulation disorders. See Important Safety Information for additional details.
