Delishea’s Story: Hodgkin’s Lymphoma, Stage 4B
Delishea shares her journey navigating Stage 4B, Hodgkin’s Lymphoma—from recognizing her first symptoms, getting diagnosed, undergoing chemotherapy, radiation, and then immunotherapy/targeted therapy (brentuximab or Adcetris).
Her story takes us on an inspirational ride from small-town primary care diagnosis to big-city treatment and survivorship.
Read her in-depth story below and watch our conversation on video. Thank you for sharing your story with us, Delishea!
- Name: Delishea A.
- Diagnosis (DX)
- Hodgkin’s Lymphoma
- Stage 4B
- Age at DX: 30 years old
- 1st Symptoms
- Extreme itching
- Dry cough
- Immunotherapy/Targeted Therapy (brentuximab or Adcetris)
- Video Segment: Getting Diagnosed
- Life Before Cancer
- Getting Diagnosed
- First Symptoms
- First Visit to the Doctor
- Describing the CT Scan
- When did you get your results?
- When did you think it was cancer?
- Describe the PET scan
- Being in a hospital during COVID
- Describe the moment you got the diagnosis
- Breaking the news of cancer and getting chemo
- How was the bone marrow biopsy
- Hearing the full diagnosis
- Video Segment: Chemo, Radiation & Targeted Therapy
- ABVD Chemotherapy
- Radiation Therapy
- Targeted Therapy (Brentuximab/ Adcetris)
- Video Segment: Survivorship
- Support, Community and Self-Advocating
- Other Stage 4 Hodgkin’s Lymphoma Diagnosis Stories
Video Segment: Getting Diagnosed
Life Before Cancer
Tell us a little bit about yourself
I’m Delishea, from down South. I’m a Louisiana girl. There’s not really much to say outside. I’m a reader. I’m more of a fiction girl, love stories. And I love pineapples.
I felt that something was seriously wrong, but I constantly tried to make an excuse.
My first symptoms were itchiness—terrible itchiness—especially on my legs that I would constantly scratch no matter what I put on there. I thought maybe it was dry skin, dermatitis, or some kind of skin problem.
The second symptom I noticed towards the end of 2019 was having a dry cough—not like the cold, whooping cough. After that, I started having a wheezing sound, which I later found out that it was because of the fluid from my lungs from the actual tumor.
Then, I started getting really tired, fatigued, just really weak, and dizzy. But what really brought me to the doctor was the lump on my neck. It’s years of symptoms and ignoring.
First Visit to the Doctor
I live in a small town. I’m so thankful that even though he wasn’t a doctor, he was a nurse practitioner who had his own office, he knew what he was doing.
When he saw where the lump was, he knew and said, “Okay, that’s not in the right spot.” He didn’t tell me he’s suspecting I have cancer. I’m grateful he didn’t make me panic right on but he said, “I don’t like where it’s at, so we’re gonna get some blood work.”
I got the blood work done the same day. He did a full CBC and tested it for Epstein Barr. He already suspected what it was, but of course, he did not tell me then because I’m a young girl who’s just so panicked. And then he later scheduled a CT scan.
Describing the CT Scan
It’s like in MRI, but they did it with contrast. They put something through your vein which makes you feel like it burns. You go through the machine that looks like a big donut hole and scan your body.
In that visit, I knew something was wrong with me. I just went in a regular check but by the end, the nurse asked me three times if I have had any kind of X-ray or surgery on my chest.
That’s when I knew that something was wrong because she asked three times. And then I finally asked the X-ray tech, “Can you tell me what was wrong?” But he said he couldn’t.
That day changed my whole life. That was the big day.
When did you get your results?
Nine hours later. But he didn’t give me the full report.
When I was back home, they called me and told me I need to bring somebody with me. They didn’t tell me what I got. So I thought, when they tell you you have to bring somebody with you, something’s up.
From the partial report, he just wanted to see that I was okay. Because from the nurse I saw a week before, these reports don’t match up. My right lung was full of fluid, and the mass was huge, it was 17 cm. That’s why he physically wanted to check if I need to be admitted to a hospital.
He leveled out with me on the things that what we do, what we need to do, what we might need to do. But he said he would move me on to an oncologist.
He called different doctors he knew. Since I live in a small town, the next biggest place was 45 minutes away. He had to make those calls for me to get someone to examine me and tell me what I needed to do next. He was very good on that part.
When did you think it was cancer?
When I first came there, and in the first exam, I didn’t think anything about cancer. And he explain something about the lymphatic system but I still wasn’t thinking cancer.
During the CT scan that same day, he brought up what looks like cancer—the mass. He initially wanted me to see a pulmonologist because of the mass on the chest, but the doctor told him no, you need to send her to an oncologist to look at the CT results. So that’s how I got schedules for it.
We were in shock, my mom and me. I didn’t cry. We sat in the car, and we still didn’t process it. I told my dad later that day, but he didn’t process it until days later.
Describe the PET scan
My first PET scan was very traumatic for me. When you’re in the process of getting diagnosed, you’re going through a whole bunch of tests. At that point, I had fluid in my lungs, so I was in pain.
The PET scan is like a CT scan, going through a whole, it looks the same for me, but with a PET scan, you have to sit an hour before. And they have to do something with you, a fluid has to sit in you. And before you get the test, they make you go to the bathroom and pass urine.
The test itself is short. That was like 10 minutes. It’s the waiting before that is not, just like in a CT but depending on if they do full body. I think they did skull to mid-thigh. I can’t remember. I had huge anxiety from it.
But once I went in, I cried because I was in so much pain. I was coughing a lot.
Being in a hospital during COVID
You will basically be by yourself doing all these procedures. Your loved ones will just have to sit outside and wait for you. It was huge anxiety.
It was the worst time to be in a hospital.
Describe the moment you got the diagnosis
In my first hospital, there wasn’t a lot of communication. There were just so many tests that were bad. I had two procedures in two days in a row that I was under anesthesia and sedation.
They didn’t say yet what stage I was at. I got the port before they told me the complete staging.
They said, “You have a good cancer, it can be treated.” But to me, cancer is cancer.
That’s the first thing I heard when my previous oncologist told me the diagnosis, “You’re young, it can be treated, you can do chemo.”
But what was really traumatizing, that not really a lot of people hear talk about is not being able to have children later on. That’s one of the first things they told me. They just told me, “After this, you won’t be able to have kids, etc. Here are the papers, sign. You need this treatment.”
They tried to explain what it was, but I learned more about it through research and looking at things on my own and explaining to my family because I wasn’t really getting a full explanation from the doctors.
Breaking the news of cancer and getting chemo
I’m a very private person. But I was at the point where I didn’t mind people knowing. I didn’t want people to just check on me and be nosy.
Most people that knew about it were close family, like my mom who was the patient advocate, my sister, dad, brother and my aunt, who stayed to help in the house. And if they told other people, I didn’t mind but they respected my privacy.
Later on, when they found out, they were like, “Why didn’t you say anything?” But I’m like, “I don’t know, it’s a weird thing to bring up.”
How was the bone marrow biopsy
It was hard because mine was back to back with another test and I was still full of fluid in my lung.
When I think of bone marrow biopsy, I picture how I’ve seen it on TV where they put you this huge needle and you’re gonna feel it in. I didn’t think you’re gonna feel numb. Maybe that was just me watching too much TV.
It was actually not a bad experience. I didn’t feel anything like drilling in the needle or scraping the needle. It’s weird that you did saw them put in something there but you didn’t actually feel it. The actual tap wasn’t painful at all. It was just uncomfortable because I still have fluid on my lungs but then I have to lay in there and be in the right position.
Hearing the full diagnosis
I found out that I had stage 4. That day they actually told me and then I found out on the phone that it spread a little bit.
That was the first time I actually cried because, in my mind, I know nothing about cancer, but I hear stage 4, that it spread a little bit somewhere else, and I automatically think negative. That was big deal.
That’s when I really came into terms with, okay, I have cancer.
I had a good attitude, I wanted to get the test, know what it was. You’d want them to have the answers right then and there.
Because when you don’t have the clarity of what it is, it’s a huge anxiety.
I had my family with me; my mom didn’t want me to be alone. My sister and aunt consoled me, and that was a huge thing.
Video Segment: Chemo, Radiation & Targeted Therapy
How was the treatment described to you
There wasn’t much communication. When I was in the chemo room, that’s when I asked, “what is this? What are you putting in me?”
What I really remember is the red kind, the red devil, or whatever they call it. That’s the one I remember the most and that brought me to researching my treatment.
It was so nerve-wracking because you will use the bathroom prior to treatment and in just a matter of hours, it becomes like that. I dread it because you’ll know there are other people getting treatment in the room and was in the same bathroom.
Your smell sensor also becomes so strong.
When you go through that process, you just want to do whatever it takes to get better—just give me whatever. Now I wish I took the time to research more, and ask more questions.
They gave me ABVD, plus steroids. They also gave me Benadryl. Six cycle every two weeks.
When I first started out, it was on Fridays, and then when I changed doctors, it was every other Monday of about three and a half hours of treatment.
For my first doctor, we did pregnancy tests before I could receive the treatment. Later on when I moved to the other doctors, I had to get blood work and see my doctor before each treatment.
I moved to a new doctor because of the hurricane damage. But it was actually a blessing in disguise because I moved to a better doctor in a bigger area. And they had a better treatment resource.
The whole experience got better for me.
Things that I wasn’t used to, even the small stuff, like having heated blankets, snacks and drinks was important.
Why is it important to a patient to have small comforts from home
You want to feel comfortable through the process because it’s long. You’ll be sitting there for hours. For some people, it might go shorter, but that’s still hours of you having something running through you.
For me, it felt very uncomfortable. It makes you feel kind of icky because you can smell the chemicals.
Sometimes the medicines can make you sleepy. But it’s the best sleep you’ll get because no one talks about the sleep disturbance sometimes at night. So at least you get your good sleep during the chemo.
Just being comfortable and making sure you have the snacks and drinks and whatever makes you feel like you’re, you know, just not alone—these things matter. Like the nurses are caring and attentive. I had nurses that would ask, “Do you want something, a snack? Do you want a drink?”
Those are little things that matter because it makes you not dread the thought of going to the hospital.
What makes a good doctor versus not a great doctor
My oncologist and my radiology doctors were wonderful. They explain even the smallest things, things that you think are stupid or just common sense questions. They stop and explain their care. They ask things about you as a person. Like, how are you doing?
I know my doctor here was very attentive. He asked how things were back at home. He knew what I went through each visit. That’s a huge thing.
The huge difference is making you feel they care explaining things to you, breaking it down and not making you feel like it is a dumb question.
Describe the side effects
Sometimes you get the best sleep during the chemo. But I feel very tired during sessions.
Afterwards, that’s when I get my first meal. So before I could feel any of the effects, nausea, or anything, kick in later, I’ll get a nice sit-down dinner. We would sit down and eat dinner and make sure I have something fulling me because steroids makes you nauseous.
Some of the side effects for me were weight gain, fatigue, my appetite kicking in, I crave carbs and sweets, which is frustrating because they tell you the opposite. You have to eat healthy, but the steroids makes you crave the worst thing.
I also had joint pains for my back, maybe because you’re not moving as much as you used to. You’re sleeping more, you’re laying down more.
And neuropathy is something I’m still dealing with today. Just a lot of other things, from hair loss, of course, the scratching, the itching that went away after my first treatment, the fluid on my lungs which eventually went away.
I did have problems with constipation and nausea. But it was a weird feeling. If I didn’t eat, it made me want to eat more. If I didn’t eat or if I ate too little, I get nauseous. If I ate too much, I get nauseated. So it’s like I had to eat something or I just feel very weak.
They also gave me Neupogen which had other side effects, too. It can cause constipation, stomach ache, can cause problems with your kidneys and all that. But I didn’t experience any of that.
I try to stay hydrated so none of that happened a lot. And I was scared of that. So I made sure I was hydrated and made sure I was flushing it out days after chemo by drinking water.
Eating healthy during treatment
I changed the way I ate. Before, I would skip breakfast before all this happened. But during the treatment, I will a huge breakfast, with eggs and toast and fruit smoothie drink. I always made sure that it would have some protein in it like eggs and fruit and veggies.
How did you deal with hair loss
For me it wasn’t a heritage. I hear some people say that it was very emotional but for me, it wasn’t. I just didn’t want to see my family see it fall. I wanted to protect them from seeing that part but they saw it anyways.
I had my hair in little twist locks. So when it was time for me to wash my hair and undid the locks, it keeps tangling. My mom kept asking me, “do you want me to do your hair?” I said no. Because I wanted to protect her from seeing that because that’s my mom. And I know my mom.
She did my hair and then, finally it was pulling from the roots. She stopped and asked, “do you have to go ahead and shave it all off?” I’m lucky that our brother is a barber. So he knew how to cut hair.
But I really didn’t want him to do it then. I wanted him to do it at the shop when nobody was there and but I needed it done then because my hair was falling and I didn’t want to see it on my pillows or wake up to it or anything like that. So he shaved it all off and then it wasn’t too bad for me because I actually started growing it back before treatment even ended.
I was very blessed and I asked my doctor about it and if it is normal to see your hair go back before treatment ends.
I wasn’t too attached, but I can say now presently, if I did lose it again from just the treatment I’m on now, then I think I will cry. I’ll be emotional about it because I’ve seen it grow back.
Tests in between treatments
Our place went through a hurricane, and that period affected my treatment. I have to do it over a long period of time, kind of delayed. But each one of my PET scans was pretty good. They showed the chemo is working, everything’s working. I don’t know the exact size though.
A possibility of radiation was discussed before the last PET scan. It wasn’t concrete yet. The doctor wanted to see first, but after the last pet scan, he said we would do radiation. And then that’s when he sent me to the radiology.
Describe the radiation sessions
I had to do 20 sessions in four weeks. So that was five days a week and I got grade 35. It’s not a lot compared to other cancers and targeted radiation.
The process was fairly easy. They mold you, which was fun because they make a mold of you like in Play-Doh. From there, they would adjust the mold to really suit you. That’s what you laid in each day. And you have to align up to those measurements each day to get a great targeted spot that they need for radiation.
Because they were targeting my chest, it had to be open and bare. But other than that, they made it really comfortable.
We listened to music—whatever music you want to listen to that day. And then you just let them do their thing. I really don’t have to do anything. They move you. So you just came in and lay down and listen to music.
Each session was about 10 minutes. But then, of course, there’s time to check-in and, and undress and do all these things. Since they were doing my chest area, I just leave my pants on. They already have gowns in your dressing room. Overall, you spent an hour there.
What makes it longer is if they have to adjust you and your measurements. They might have to move you around to get that right area because they have to make sure it’s right before the radiation and that computer starts.
They try to make you feel comfortable so you don’t dread it especially I’m doing it five days a week. I had a wonderful team and I didn’t dread going. Like I really enjoyed them.
Radiation side effects
I did not feel any side effects during the process. But it came after treatment.
It is like getting sunburned inside. And it’s not a great feeling because you can’t drink, you can’t eat, and it hurts. Like a cat clawing inside your throat. All they can do is make you comfortable.
I took aloe vera juice. They call it miracle mouthwash mix. But other than that, I can’t really do anything. I couldn’t eat anything. It was dreadful. Even water hurts to drink. And it lasted for about a week.
What it meant for you to finish radiation and to have support around you
That last day was such a wonderful day because they took the time out to make me feel special like it was your birthday or something because it was a good day.
The team was wonderful. They were caring. Especially because I was going through it at a very young age, and I didn’t see anyone younger, which is a good thing. Overall, it was a really good experience and a good feeling.
Targeted Therapy (Brentuximab/ Adcetris)
It’s a targeted therapy. It’s given through infusion, so it was given through your port.
When you get chemo, chemo kills all cells but this kills just the bad cancer cells.
It doesn’t really have any side effects so far. I just noticed some neuropathy on my fingers and my feet.
There’s a possibility of fatigue, hair loss, and all that, the same as chemo, but I haven’t experienced anything else so far. And I get it every three weeks for 30 minutes for six months to a year. So I don’t know if it’s going to be until the end of the year.
How do you feel and your doctor with the progress so far
My progress has been going pretty well. I’ve had PET scan at the beginning of the year, and from the end of the radiation, I had a CT scan.
My tumor has shrunk just from the radiation. So I have one coming up in June and we’ll see if it still feels strong. The doctor really wants to get it to a point where it’s steady—not growing, no activity, no, nothing to where they can just monitor me and I won’t have to come in.
They just want to get me to a point where they can fully say that they treat it because this cancer, like they said, is treatable.
They just want to make sure they do whatever possible they can before they let me go—let me go a little bit.
Video Segment: Survivorship
Support, Community and Self-Advocating
Describe how you helped protect your mental health throughout all of this
For me, it was my faith. It was just having faith. I believe in God, I’m a Christian and that kept me steady, to not go over the edge and get to that deep hole. Sometimes your thoughts can lead to the end but it was just about taking it day by day.
My faith, and the really good support that I had helped me through.
Having people that surround you and love you and keep you grounded really helped a lot.
Importance of caregivers
My caregiver is my sister. But from the beginning, it was my mom and my dad. They were a big help from the very beginning.
My mom, being a big mama bear, wanted to take me to all my treatments. She wanted to do everything. So I had to tell her to take a step back and make sure her health is okay.
And then once I moved doctors, I stayed with my sister, who actually stays in the same area, and I’m with her all the time. I didn’t have to worry about traveling or staying in hotels to be able to attend treatments.
Participating in clinical trials
My doctor had the option to give me something stronger. But he didn’t want to exhaust all the options out on this one time. Just in case it comes back later on, I have option two and three.
That’s one of the reasons why he wanted to do the scan to make sure it’s treated and gone and never comes back. So I think clinical trials are very important.
If I ever get to that point where they didn’t have any other option, I would be open to doing it—whenever I can, whatever I can to be cured and treated or if not cured, but in remission again.
Getting treatment from small and big hospitals
It’s a big question of health care. Like health insurance.
Before I got sick, before 2020 and the pandemic, or before we were in a stay-at-home order, I didn’t have any health insurance and it was because my job didn’t provide good health insurance. And when I got laid off (I did get laid off during the process), my mom convinced me to get Medicaid or whatever.
Being a millennial, thinking that we’re going to just be gone two weeks, I didn’t want to but then I just did what she said.
I didn’t think I had cancer then. I didn’t think I was going to need it. And it did come in handy later on. And not being able to work because my doctor doesn’t want me to work—that was a big thing. It is just as real.
And since I live in a smaller area, while there are hospitals, everyone’s there for a hospital. But in the bigger area that I went to, they have multiple hospitals, and I could get treated at an actual hospital. It’s a big difference.
In smaller areas, you can probably still get treatment. But the bigger areas attract the doctors that know more or have more experience in things like that, and that’s where the traveling comes in.
Message for other patients about speaking up
Listen to your body. I felt I need to speak up, but then, I also thought, okay, they’re professionals, I’m the patient. They were trained for this. But also, you know your body.
You know when something is not feeling right compared to your other experiences before. I’ve made sure I spoke up and let them know whatever I’m feeling, so they can do what they needed to do.
In my situation, the process would have been to check it out, to get an x-ray and they didn’t do that. So that was on them. I made sure I spoke up and, they said they were going to note it in my chart and to slow the medicine down.
As I move to a bigger area where people have more experience, the nurse knew I’m not getting treatment. They did a port placement test to see what was going on, which what they should have done before. And that’s when they knew that the chemo is not going where it should. That’s another, not-so-good story.
So just check with yourself. When you do not feel anything, or if you feel like everything—everything is valid.
Even the smallest thing that might be off, tell your doctor so they can know. And it might be significant later on.
Just to give an example, now, I was having joint pains in my feet. My doctor noted it and he adjusted my medicine. From 120, now I get 8.
Even the smallest thing, your doctor can make the changes that he needs or know, and need to note in your files and your paperwork so you can be better. So you won’t have those huge side effects. Speak so they can make it more comfortable and come up with solutions.
Message to patients and caregivers
Just take it day by day. hour by hour, and evaluate yourself, your emotions, and everything.
Because if you just think about getting through the end, you just want to get through everything. You just want everything to be done, and you can start your life over.
Take your time, do what you love. If you can’t work anymore, take that time to figure out what you like to do and do it. That’s where I’m at now, figuring out. Cause you just never know when it’s your time.
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Other Stage 4 Hodgkin’s Lymphoma Diagnosis Stories
CC W., Hodgkin's, Stage 4
Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)