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Survivor Interview – Kaye H.

Kaye is a non-Hodgkin’s lymphoma survivor. She talks about changes to her digestive system after treatment, stem cell transplants, and family relationships.

A smiling blonde woman wearing a red shirt is interviewed against a white background

On May 15, 2001, I had a surgery to remove a small lump in my neck, and it came back positive for non-Hodgkin’s lymphoma. It was a complete shock to me. I had no other symptoms. I was treated in the summer of 2001 with just a round of Rituxan, four weeks, four treatments, and it worked like a charm. I went into remission. I had a slow-growing form of non-Hodgkin’s lymphoma. My doctor was great, and he said, “You got the good one. You got the slow-growing one. You can learn to manage it, get treated a little bit every once in a while. But it’s not gonna be a big deal.” I was so relieved. I went merrily on my way for two years. Then in fall 2003, I had another lump that had grown in my neck. My new doctor told me not worry about it; it wasn’t a big deal. On January 24th, I went into the emergency room with a great deal of pain in my abdomen, where we found out I had Stage IV throughout my abdomen. My lymphoma had transformed to a very, very aggressive kind. Somewhere in the process of about three months, I went from being in remission to Stage IV. We did chemotherapy for about five months, and I just went through a stem cell transplant almost three months ago. Right now, they’re careful to say remission. They say ’absence of disease’ and ’no progression.’

I have a partial obstruction in my small intestine because one of the tumors was so large it pressed against my intestine for several months and pretty much atrophied that part of it. So I ended up on IV food for about four months. It’s called TPN, Total Parenteral Nutrition. I couldn’t eat anything from February 8th to the end of July. I’ve lived on smoothies and juice for so long. You miss something crunchy. Your gums start to deteriorate because you’re not getting any kind of hard food. I’m worried about the next time I go to the dentist. If this is something I’m going to end up living with the rest of my life, it’s a little discouraging. When you’ve made it through the stem cell transplant and your blood numbers are all up, and everybody’s cheering for you, and you’re in the bathroom throwing up all the time because you can’t keep food down, it’s tremendously painful. I’m very cautious about what I eat now. I keep trying. I’m just very thankful that I’m able to eat after not being able to.

Having the shingles was an interesting experience. It started out with just this little rash, and it immediately spread down my back, my rear, and my leg. These little bumps just erupt at the same time, literally, and it’s very painful. It itches like crazy. They hospitalized me and put me on IV antivirals. The rest of my skin became hypersensitive. I had a pheresis catheter in my chest where the dressing had to be changed twice a week. Pulling that dressing off was so incredibly painful. I couldn’t believe how sensitive all my skin was. And then I got little bumps all over my body, and I still have a little bit of the residual left. I’ve got scarring down my whole leg from it.

The shingles were caused by the stem cell transplant. They do a lot of testing before you go through the stem cell transplant to see what childhood illnesses you’ve had, what things you’ve been exposed to, like cytomegalovirus, certain types of herpes viruses, and chickenpox, because once they reinfuse you with your own stem cells — I did an autologous transplant — they can erupt. All these childhood illnesses that you once had can come back again because you’ve got a lowered immunity. Fortunately, I only tested positive for chickenpox. So I got it again. In adults, it becomes shingles.

They’re creating an idiotype vaccine out of my own cells for my slow-growing non-Hodgkin’s lymphoma. The stem cell transplant is a possible cure for my aggressive non-Hodgkin’s lymphoma, and this vaccine is the only possible cure for the slow-growing. I jumped on the chance of getting in this clinical trial, because my aggressive non-Hodgkin’s lymphoma grew out of my indolent one. If I can’t treat the indolent one, the whole thing could happen again. So I’m thrilled to be in the clinical trial. I get one shot a month for four months, and then we skip a month, and then I get one more shot. They’ll follow me for 18 months after the last shot. That gives me a tremendous peace of mind, because I’ll be watched so closely and have everything recorded, and my results will come back to me immediately.

I have a friend of mine who’s battling two forms of breast cancer right now, so she and I talk. I strongly urge her to try to find a clinical trial. I feel that in cancer clinical trials, if you’re in the control group, you get the best possible current treatment there is. If you’re in the group that’s testing the new drug, you get the best possible treatment there is currently available plus the new drug. Those are the only two options in a clinical trial for cancer. I think there’s a fallacy out there that you won’t get treated or you’ll get treated with a placebo. That doesn’t happen with a clinical trial. There are dynamic, exciting, phenomenal things that have happened in just the last five years. There are things that we can’t get hold of yet unless we’re in a clinical trial. Some lifesaving, absolutely phenomenal new technologies and medicines. There are clinical trials everywhere. Even if you’re in rural America, there are clinical trials. Nebraska’s a huge place for clinical trials. I encourage everyone I know that’s having this experience to please follow up and look at clinical trials for the best possible treatment.

I’m a very strong individual, but having cancer is a pretty tough thing to swallow. I have children, and they’re remarkable in their utter belief that everything will be fine, and that I’m going to be okay. Having them around is fabulous, because there’s no other way to think than that way. But sometimes you need a little help. I’m in a support group with the Caring Community. My husband is a Rock of Gibraltar, but I do wish he would get help, because he’s got no one else except for my friend’s husband, the friend that has the two kinds of cancer as well. He’s got no one else to really share the experience with. I think you really need to have a safe place to go that you can talk about how you feel like a burden to your family, or how worried you are about the future, or how scared you are of the treatments, or just to whine about how sick you feel after the chemo, and have everybody in the room go, “Uh-huh, we understand.” I’ve had the most amazing support group of friends that I could ever ask to have, who bring meals and send cards and funny letters and sent me a treasure chest of things that were meaningful to each and every one of them. I could look at that every day and find strength.

First time around, my kids were 11 and 18. My daughter was just returning from her first year away at college. So we celebrated her birthday, and the next day, we told her about me. She didn’t want to deal with it, and she didn’t really want to talk about it, but she wanted to be home for the summer, and she stuck around at home. So that was her way of dealing with it, “Don’t verbalize everything to me, but just let me sit by you and watch a movie with you and hang out with you.” I was thrilled with that, because she’d gone away to college and I’d really missed her. My son was 11 at the time and asked me questions all the time. He had no fear about asking me questions and wanted to know everything about it. I definitely let his teachers know what was going on and asked them to let me know if they saw any warning signs or any problems. He really, really handled it well, I think, because he was open to talking about it. Now this time around, he’s 14. He definitely had a very different response this time around. He was being the little man, and he’s not gonna talk about it, “Everything’s fine, everything’s cool, but don’t tell me anything. I don’t really want to know.” That was really hard to not have him be connected to it. My daughter moved back home. She graduated college, moved back home to stay and help cook and help take care of things. She actually became more open and asked more questions. She had a total transition in a more open and positive way. I think she was just older and able to handle it better.

When I was first diagnosed, I read Lance’s book, and he became one of my inspirational people that I follow. Talk about somebody who had bad odds. And then the second time my cancer came about, I had some pretty bad odds. So it became even more important. My husband got me this wristband. It serves to me as an inspiration to keep trying every day, to be positive, to focus on health, and to be grateful and thankful.

My name is Kaye Hentschke, and I’m a three-and-a-half-year non-Hodgkin’s lymphoma cancer warrior and survivor.

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