Cynthia Gathers describes the challenges of having cutaneous lymphoma—and what the diagnosis taught her about love.
I’m 52 years old. I was diagnosed with primary cutaneous anaplastic T-cell lymphoma on July 3, 2013. I retired May 31, 2015 from the local Department of Social Services after nine years as their primary telephone operator and administrative assistant.
I don’t have any children. I do have Deuce, and he has four paws. He’s a black and white tuxedo cat who is spoiled rotten. That is my child. He is very protective. He’s very nurturing to me. My cat can pick up the energy of what I’m going through. The days that I don’t feel good, he’s a very good cat and he ministers to me, and the days I feel good, I have to constantly cater to him.
I have two cousins, both male, who have the same type of lymphoma I have. We’re all on the same side of the family. We’re all paternal, second cousins. One is cancer free. He went into remission six months ago. My other cousin, his cancer is back. He’s not doing that well.
My journey started in April of 2013 when I developed a pimple on my face and I tried to pop it and it wouldn’t pop, it bled. When I went to my family doctor—I didn’t make a special trip, but for my regular appointment—he said, “We’ll get you some antibiotics and we’ll clear that up.”
But the pimple didn’t go anywhere. So he said, “We’ll call a dermatologist.” The dermatologist suggested cortisone. By this time I had developed one on my shoulder, so he gave me a shot on my shoulder and face. He said it would be OK.
I was planning on going to a family reunion in August. By June the blemishes hadn’t gone away. I was very vain and didn’t want pimples on my face when I went. So I said, “I’ll call my grandmother’s surgeon and see if he’ll lance this pimple.” He removed what was on my face and the one that was on my shoulder and he looked at them and said, “This is probably just a sebaceous cyst, but I’ll send it out for a biopsy anyway.”
The biopsies came back positive for lymphoma. What I thought was a pimple was about the size of a pingpong ball and required eight stitches to get out of my face.
We started localized radiation and by this time I had developed a lump behind my ear and another on my shoulder. They were removed, biopsied and radiated. Then I had another one grow under my chin. My doctors decided to stop radiation because they were chasing them and not curing them. We started an experimental drug. It did nothing. I still had the lumps and it gave me a very bad case of neuropathy. It got to the point where after about a year I couldn’t walk because the neuropathy was so bad I was losing my balance and falling. My legs were swollen. When the treatment stopped the cancer spread again.
My doctor said there was no more they could do with chemo, and they began talking about a bone marrow transplant. I visited my cousin’s doctor and he put me on a traditional kind of chemo in 2014. In the meantime I was given steroids and other things to keep myself going. I retired after that treatment because while we were waiting for things to be in remission, I found five lumps. A doctor biopsied two and they came back with cancer. So I was set up for a new chemo. It’s a four-hour infusion I did once a week for eight weeks this spring.
I hope I go into remission—and stay there. That’s the problem I’ve been having. The chemo will knock it into remission, to where I’m not feeling any pain or anything, then all of a sudden, a knot grows somewhere and there’s cancer again. My body is worn out and after almost two years of this … I’m just tired. And the neuropathy is debilitating to the point where I now walk with a cane and have no feeling in my feet except tingling and pain.
That’s pretty much my cancer journey. It involves my best friend taking me to treatment, sacrificing her Fridays, driving 85.7 miles every week. She is very faithful in taking me to the doctor and making sure I get to all of my medical appointments. She has been a very best friend.
When you have lymphoma there are days when you just really don’t feel good. You just do the best you can. You just take your time. It’s a challenge, but I’m winning that battle. I do a little bit at a time and I keep going. I have learned that it’s not going to beat me—I’m going to beat it. It’s a long journey I wouldn’t wish on my worst enemy. I feel that this time the cancer has to go into remission, because I don’t want to keep doing this. I can’t say it will go into remission, but I have plenty of hope.
My daily life before chemo was fantastic. I’m a minister of Christian education at my church. I was preaching and teaching on a regular basis and we were doing several outreach programs, so I was doing a lot. I was taking on more at work. I gradually had to give up everything, or adjust how much I did, because I didn’t have the energy to do much. With the neuropathy, I could no longer do my dance group because I couldn’t dance. Cancer robbed me of a lot of activities.
I want others with this kind of lymphoma to know you have to watch your body. Your body can show signs of the cancer in places under the skin. If it grows, contact your doctor, because it comes with no feeling. I showed no symptoms of lymphoma before the pimple. I didn’t get sick. My lab work never showed any abnormalities. My family doctor was upset and very apologetic because he didn’t diagnose the lymphoma. I told him it wasn’t his fault—I wasn’t showing signs of being sick.
My church has been very supportive. They call and they come visit. My family has been a help. My friends have been a blessing. I find joy in the people God has sent in my life. They have shown me that they will do what it takes to help me get to where I can stand on my own again. God has sent people who just genuinely love me and prove it with their actions. That in itself is more amazing than anything else I have ever encountered.
My gas hot water heater died and I was told it would be $1,000 to get it replaced. A plumber friend said I could get an electric hot water heater for about $300. So I said, “OK, that saves me a lot of money.” But I didn’t buy it because I didn’t have the money. One of my friends asked about it. Then she said, “Merry Christmas,” and gave me a check for $300. Then one of my church members, his wife offered to pay the $100 service fee. People don’t do that unless they love you.
Another friend said, “Would you like to go with my family to Disney World? You don’t have to pay for anything but spending money.” Then my cousin sent me a Visa card with $200 on it. Another cousin sent $100. People just pour out their love. It has been amazing. The Lymphoma Society has been wonderful. Caring Voice has been a blessing. Those are just a few examples. There is an outpouring of people and organizations that help.
It’s just different than what life was before. Because before I didn’t need people. Or I thought I didn’t need people. We all need somebody and we all need to love one another. Sometimes I sit in awe and just praise God because it is only his grace and mercy that allow these people to come into my life. We have no other way of showing people we love God than how we treat one another. That proves to God that we love him when we treat one another with love and kindness. And I have discovered there are people who truly love God.
What I learned with cancer is, I’m not promised any day, because I don’t know what day the cancer’s going to take me out of here, or something else is. But I’m so grateful to God to let me enjoy a new day, every day that he does.