Kim’s Stage 4 Follicular Non-Hodgkin’s Lymphoma Story

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Kim’s Story on Video

How I Got Diagnosed

Getting Through Chemo & Side Effects

Navigating Life with Cancer

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What were the first diagnostic tests you underwent?

They did a CT scan, and they saw that I had lymph nodes from my neck down to my stomach that were enlarged.

Describe the excisional biopsy

They took the biopsy from my groin area. That’s too much detail, but they took it from there. The doctor actually, when I woke up, told me that it looked okay. I really wasn’t worried at that time. We just waited for the results.

Did you feel any pain waking up from the biopsy?

No, it was an easy procedure. It was nothing major. It was comfortable.

As you’re going through this, your mom was also dealing with cancer

My mom had lung cancer. She was diagnosed, and she went through 6 months of chemo. It was a harsh chemo, but she died 6 months later. It was hard. It’s still hard.

Next was the bone marrow biopsy

Honestly, it did not hurt at all. I said to him, “Are you done? Did you do anything?” He’s like, “We’re done already,” and I’m like, “What?” 

I didn’t feel anything. Nothing. It’s not bad. It’s not bad at all. I think I was more scared. It didn’t hurt.

I folded my legs in a fetal position, and he just took a piece of it out, then put it in a tube and then sent it off to the lab.

How did you pass the few days it took to get the biopsy results?

A lot of reading, a lot of walking. Even now I walk, and I love to clean. I just kept myself busy doing whatever I could do, spending time with my husband and my son just to keep my mind off it. We would go to the parks, go anywhere where I could just stay busy.

Official Follicular Lymphoma Diagnosis

How did you get the full cancer diagnosis?

My doctor actually called me, and he told me I had follicular lymphoma. He said it was stage 4. My stomach just dropped.

Of course, I cried. He said, “The good thing about this is it’s treatable.” He told me that follicular lymphoma is very treatable, and he said that I didn’t have to have a really strong chemo where I would lose my hair. 

I lost patches, but I didn’t lose all my hair. He said because it’s indolent — it’s a slow-growing cancer — that the chemo that they would give me would be mild. 

He told me that everything would be okay. They were good to me.

Recount the moment you got the diagnosis

I remember going into the office and sitting there waiting for the doctor to come in. The nurse came in. I really wasn’t present because we had just lost my mother. 

I remember him coming in, and he told me that I had cancer, lymphoma. I was actually in shock. I don’t remember a lot after that. 

How did you and your husband process the diagnosis? 

It was shocking because I just wasn’t expecting it. It was the last thing anybody thought. It was because I was healthy. I was a healthy person. I took care of myself. I worked out, so it was shocking, definitely.

My husband didn’t know what to say. He was at a loss for words because I looked at him, and he didn’t know what to say to me. When we left there, we were in the car, and we were just really quiet. It was crazy.

»MORE: Patients share how they processed a cancer diagnosis

My son handled a lot of this better than I did it. He helped me out. He helped me get through all this. That’s what keeps you going. They’re smart kids. 

It’s however you feel comfortable telling your child, but I’m going to say that they can handle it better than you’d think.

»MORE: Parents describe how they handled cancer with their kids

Did you consider a second opinion?

Honestly, I didn’t really think about it. I think I was still in shock, but when I met my doctor, I just knew that he was the right doctor. He was so good to me. He was so kind, and he explained everything to me, so no, I did not get a second opinion.

How did your oncologist describe follicular lymphoma?

He did tell me that it is treatable. It’s not curable. “We can put it in remission.” Really, we didn’t know what was going to happen, but we just went with the flow. 

I’m sorry. It’s hard for me to talk about sometimes. He just said that it’s a treatable cancer, it’s not curable, you can put in remission, and sometimes it does come back and sometimes it doesn’t.

The cancer diagnosis is still hard for you to process

It’s trauma. It’s a trauma for me. I think it’s because it was so close to when I lost my mother. Her passing away from cancer, and then I got diagnosed with cancer, so I’ve gone through a trauma.

It’s something that is still shocking and hard to believe. It’s very emotional for me.

Describe the chemo schedule (Rituxan and bendamustine) 

I would go in, they would draw my blood, then I would go in the waiting room, and then the doctor would come in and tell me how my blood work was. 

I was blessed that everything was good. Everything was smooth. All my blood work would come back good.

I was getting the chemo every 2 weeks, along with the steroids that they give you. Then for the white blood cell count, I also got Neulasta every 2 weeks. That was for a whole year.

I didn’t like it because it’s like an interruption. It’s something new. It’s something you don’t look forward to. I knew that once it was done, I’m like, “Ah,” but then I’m like, “Oh, 2 weeks later, I have to go back.” 

It’s just something I wasn’t looking forward to because it becomes part of your life, and I didn’t want that part. I don’t think anybody does, but it just becomes part of your life for a while.

How long were the infusions?

They were 3 hours. The first treatment was almost 6 hours because I had a reaction to the Rituxan. I wound up getting hives, so they had to stop it. They waited a while, gave me Benadryl and restarted it.

Then I seemed to do fine. Every treatment after that was 3 to 4 hours.

What were the chemo side effects?

Summary: nausea, constipation, trouble sleeping, crave salty foods, skin felt hot, thrush

Honestly, the chemo itself was not bad. When I first got the first chemo treatment, I was sick. I was throwing up, and I had nausea. 

I had thrush a lot. The thrush was very painful. I couldn’t eat sometimes. I had to eat a lot of liquidy foods. The thrush was like a white coating on my tongue.

If you ever ate Sour Patch Kids and you ate too many of them, you would get this white film on your tongue. That’s what it kind of reminds you of, and blistery. It’s very painful. Very painful.

The other side effects for me was not sleeping, and my skin was hot. It felt like it was on fire. 

In all honesty, I craved something salty. I had to have salt. I would eat a lot of salsa and chips. I really didn’t have a lot of side effects as far as the chemo. Just not sleeping and salty foods.

The only other real side effect that I really had was from the steroids. I would be up all night. Also from Neupogen, the white blood cell count medicine that they gave me, I felt like I was hit by a Mack truck.

Did you lose your hair?

I lost patches of my hair. I didn’t lose my hair fully, but I did lose patches of my hair. I had really long hair, and I had to get it cut really short. I was blessed, yes. 

What helped you with the side effects?

I took nausea medication. Because I was constipated, they told me to take Miralax. I would actually just take the Miralax, and I would take it a couple of days before my treatment because I knew it was coming. I would take it a couple of days before my treatment. 

As long as I didn’t eat a lot of cheese or just stayed with the vegetables and the fruits, I would be okay. Sometimes, I would go a day or 2 without going, but then as long as I took the Miralax, eventually it would work.

For the thrush, they gave me the mouthwash, and that did help me a lot because I would get it in my throat and on my tongue.

There were cough drops. I wish I could remember the name of them. They were round, they started with C — I can’t remember, but they helped. 

What happened was they numbed my tongue so I wouldn’t feel the pain. I think they were clotrimazole. They helped me a lot because it would numb my tongue besides the mouthwash.

Really, what was helpful with the thrush was just mainly the mouthwash and the lozenges. Lozenges help a lot. A lot. They numb your tongue. It’s still painful, but they numb your tongue for a while, so you’re like, “Some relief!”

I didn’t eat a lot of solid food, but your best bet is, if you get a lot of thrush, stick with the liquids. I forgot about the milkshakes. I drank a lot of milkshakes, too.

Describe the Neulasta shot and side effects

When I first went, it was the needle. Then, maybe a month later, she said, “Oh, we’ve got this new thing. It’s a timer. You stick it on your belly button.” 

How did it make me feel? I would cry when I got my last treatment because I knew the next day I had to have the shot, and it was horrible. It made me feel like you couldn’t touch me — my head, my arms, nothing. It felt like I was hit by a truck. It was horrible, and nothing helped me. 

I’ve even tried the medicine that they told me, Claritin, and it did not help me. I just had to go with the flow and wait for it to ease up, which took about 3 days.

Tracking Treatment Progress

Describe the PET-CT scans

I had a couple of scans. My first scan was 3 months after my first treatment. It was a PET-CT scan with contrast dye.

The only thing I hated about that was that you felt like you had to go to the bathroom. The heat, you just feel like you have to go to the bathroom, but that’s not bad at all. I don’t know how else to explain it. 

It’s actually relaxing, kind of. I don’t know if that makes any sense, because you’re lying there and they’ll tell you to breathe, hold your breath. 

The dye that went in, like I said, it’s just a little hot, and you feel like you’re going to pee yourself. Otherwise, I’ve never had a bad experience with the PET scan.

How did you deal with the “scanxiety”?

That was horrible! You’re always anxious. In my own experience, I have bad anxiety anyway with the waiting. I prayed a lot. I have a Mary statue, and every time I had to go to the doctor or I had to get tests done, I’d always hold her and pray. 

It was a lot of anxiety. I prayed that the treatment was working and that I wouldn’t have to switch over to something else.

Describe the moment you learned you had no evidence of disease

I was in the office. My oncologist came in and told me that the cancer was gone. I didn’t like using the word “remission” because it was so new. I would say, “You mean no evidence?” 

He would laugh at me because he would say, “Remission.” I was scared and happy at the same time. I was scared because I knew that I wouldn’t see them as often. Happy because I know that I was blessed. 

I came home and gave my son the biggest hug I ever gave him. It’s hard to explain because you’re happy, but then you’re also scared at the same time. It was a relief, though. I just felt relieved a little bit.

What was the follow-up schedule?

I would go back every 6 months. It’s still every 6 months. I get blood tests. My last CT scan was when he told me I was in remission. 

My oncologist said unless I have any kind of lumps and/or my blood work comes back abnormal, then we would do a CT scan, but as of right now, it’s just every 6 months and just blood work. 

So far, everything has been going really well!

Navigating Life with Cancer

Describe the transition to survivorship

I was excited, but I was scared at the same time. Because when you’re going to them every 2 weeks, you just feel comfortable because you know that they are watching everything.

They are looking at your blood work, and they are looking at your scans, so you know that you’re being taken care of.

You know that if there’s something there, it’s going to be seen. I knew that once the treatment ended, it’s not going to be like that anymore. It’s scary. 

I don’t know how to explain it. I just felt comfortable going every 2 weeks, and now that I knew that it wasn’t, I was scared.

I’m like, “Oh my God, what if they missed something there because I’m only going every 6 months? What if I don’t realize that something’s going on?”

I was really scared. I didn’t know how to adjust to that. For 3 years, I was going to them every 2 weeks. You have to get used to a new normal, and I didn’t know how to do that. My life was changed forever. I did have a hard time adjusting.

How did the cancer impact your relationship with your husband?

I have to say that my husband was my rock and still is my rock. He took off 6 months off work to take care of me. I’m starting to get choked up. 

His work allowed him to do that, and even now he goes to every appointment. He went to every chemo appointment. 

Any guidance for others on handling cancer with relationships?

You just have to be supportive. You don’t have to listen. Just be there. I think that’s important, too. A lot of times, he didn’t have to speak. He just knew what to do, and he still does. 

I’m not a good advice giver, but the only thing I could say is to just be there. You don’t have to have words; it’s about support. More than anything, the support. Just your presence. That’s the most important thing. That was what was important to me.

»MORE: 3 Things To Remember If Your Spouse/Partner Is Diagnosed With Cancer

Finding help and support from outside groups

My cancer doctor, Dr. Rabachowski, knew that I had just lost my mother. He saw what I was going through during treatment, and I just wasn’t handling things very well, dealing with a lot as a family at that time. 

He said there’s a group called “For Pete’s Sake” that gives families some respite, a vacation to get away for a while to just enjoy being a family again. 

The trip would help get to a little bit of normalcy to just spend time together and forget about the cancer just for a little while. They sent us to Disney World.

I cannot thank them enough ever. There are not enough things that I could give them. I love them.

The people of the organization are just awesome people. They helped so many families. They’re so good, and they’re just there. If you ever need to talk, they’re there for you. They’re just awesome people.

At the time, it was so nice to just come here, have fun, laugh and not think of what’s going to happen next week getting back to treatments.

Then there’s also “Lisa’s Army,” a group that makes care packages for cancer patients. I got a package from them. It had all kinds of things in there. They’re also a good organization. 

These were 2 organizations that were very good to me and my family, and like I said, I can never thank them enough.

Last message for other patients and caregivers

The only thing I would say is no matter what, just keep your head up and keep pushing forward.

Surround yourself with positive people and people that will support you and that love you, but always keep pushing forward, always, and with a smile. 

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