Nicole, wife and mother of three, was diagnosed with classical Hodgkin’s lymphoma in November 2022.

She only experienced general malaise and had a rash appear randomly throughout a six-month period. Desperate for answers and without any discernible symptoms, she turned to a functional medicine doctor who decided to give her a multi-cancer early-detection test.

Testing positive for cancer through a Galleri test got the ball rolling and got her started on her journey. Throughout her experience, Nicole faced challenges, including the mislabeling of her symptoms as anxiety and the need to advocate for herself with each doctor she encountered. To feel less alone, Nicole sought out online support groups and found comfort in The Leukemia & Lymphoma Society.

In addition to Nicole’s narrative, The Patient Story offers a diverse collection of Hodgkin’s lymphoma stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Pre-diagnosis

Initial symptoms

After my last baby in 2021, I didn’t come back the way I [did with] my other babies. But I was over 40 [and] had thyroid issues. Everything I was feeling could be attributed to my thyroid. I was trying to see [an] endocrinologist. It was around COVID so it was impossible to get in.

I had a weird rash on my arm. It goes away [and] comes back. I couldn’t figure it out. Did I have wine? Did I have cheese? Did I have bread? What’s happening? Did I get too much sun? I had no idea. Other than that, I was pooped.

They wouldn’t see me for six months. My physician kept attributing it to lack of sleep, thyroid, anxiety, and random things I knew weren’t right.

I knew something was wrong. I didn’t have the B symptoms, night sweats, itching, and temperatures. I was checking everything. I was looking for anything because the minute I had something, I could be seen by someone else. At that point, my cycles were off and I was feeling so shot and really sad, frustrated, and lost.

Putting the blame on anxiety

I’ve spent a lot of time with different doctors. I’ve been able to speak to or change doctors because of how I relate to them. I explain that I know about my anxiety. I’m very, forthcoming about my anxiety and it’s very specific to [my] health.

But I also have [my] gut and I haven’t been wrong a lot in my life. I’ve had things happen. [With] my third child, I had HELLP (hemolysis, elevated liver enzymes, and low platelets). I just felt weird. My baby and I wouldn’t be here if I didn’t say something.

I preface a lot of my first appointments with, “I understand that this might appear as anxiety or that I’m tightly wound.” I idle high. They either get it or they don’t and I explain that I know it.

In this process of lymphoma, I’ve told every single doctor, “I know I’m not your only patient and I get that. I’m not minimizing myself, but I’m also aware that you’re running around. But you have to understand, I’m here with you now.”

I started being very forthcoming [with] doctors [at] around [age] 20 or so. Along the way, I learned how to talk to them and if it doesn’t work, it doesn’t work.

Getting the results of the cancer detection test

It came to her in the mail. They called me to schedule an appointment and I said, “I know why you’re calling me. Can we just get on the phone? We’re not going to wait till next week.”

I tested positive for a cancer marker. There [are] false positives so everyone went to the false positive conversation. Now we have to prove that it’s real.

Getting a CT scan

I wanted to know what was next. Like every other process, you have to prove you need certain tests. No one felt anything. I still don’t feel anything.

I had to go through all the steps of going to a PCP, showing this test, asking for a CT scan, getting that approved, and pushing it through insurance. I had to work with my employer, my PCP, my functional medicine doctor, and Galleri. I had to make sure I had everything.

This is where you learn self-advocacy and the fight. I don’t mean to be pessimistic, but it is a fight. You have to go all in with everything and push, push, push.

Feeling something was off & no one was listening

I actually said to my doctor, “I told you so,” but she knows me well enough to laugh. I told my husband, “I told you so.” I wish I was wrong.

Ultimately, I was glad I was right, mad I was right, but I knew I had a road ahead of me. I didn’t know what that meant and neither did my functional medicine doctor.

Getting the mass biopsied

It turns out the CT wasn’t proof enough to get into a cancer center or a professional oncologist.

I found a thoracic oncologist. He had to reach out to a bunch of people because it was mediastinal, meaning it’s behind my chest near my heart. I got that done before Christmas and they had to send it out. I had to wait, of course.

I told my surgeon, “When you go in there, I open myself up to infection.” Sure enough, I got the flu. Then all of the symptoms came. I lost my voice, I got sick, I got [a] fever — all the things happened.

I lost my voice for months. That mass was starting to press on my vocal cords. Everything started triggering my immune system. They started moving me along fast. Everything started getting worse. Honestly, I felt worse after the biopsy than I did before.

Getting the official diagnosis

When I got my biopsy from Utah, it was diagnosed as Hodgkin’s.

I’m in a small segment. There [are] only 8,500 diagnoses of classical Hodgkin’s lymphoma a year in the United States. I’m in a different age range and it’s a smaller subset of people. As a mom, I felt extra lonely in a weird way because I couldn’t find anyone. I also didn’t know if I was overreacting.

I chose to go to Dana-Farber.

I didn’t get a PET until after my consultation and after they started planning my chemo. I had my chemo and my port dates before I even had my PET date.

I felt like I was in a chemo coma like someone was laying on top of me. It’s like the worst flu. I wanted to get up and do things, but I knew to lay there because the more I rested, the better I would bounce back.

My appetite was quite good. I was eating all my favorite, terrible foods. I know so many people go into health mode, eat really well, and do everything by the book. I admire them. I thought, I’ll eat because I’m hungry and I’m scared that one day I might not want to.

I took a lot of Epsom salt and baking soda baths. I drank a ton of water and liquid IVs. You feel crinkly and tight. I knew the more I could get out, the more I could start moving.

As you go on, it weighs on you heavier. I have a harder time bouncing back. I would say my third or fourth day is [when] I get really frustrated and force myself to really dive in. I know it’s not necessarily the best idea, but it does help in that what chemo does to your body. You start to get a little looser. You’re moving and doing things.

I’m so dizzy sometimes [that] I don’t even know what to do with myself. Sometimes I feel it coming. I’ve never passed out before, but I feel like that’s what happens.

My appetite is getting worse. I’m not as hungry for my favorites. I can’t eat as much. I still eat mac and cheese. Why not? I already have cancer. Let me have mac and cheese. I used to be able to eat the bowl, but now I’m slowing down.

People imagine what they see in the movies. You’re going to be puking and basically hugging the toilet. I look very, very frail and unable to eat. This may happen [to] some people.

Mid-treatment scan

I’m trying not to look at it as an endpoint.

I had another PET scan. My ABVD is working on the “friends” and slowly on the big mass. I’m staying with ABVD. My body is receptive.

The point of the next PET scan was: is this cocktail working for your body? There are people that just are resistant to it.

There are many first and second lines of lymphoma cocktails. I wasn’t nearly as anxious as I thought I would be going into the PET scan.

The Leukemia & Lymphoma Society is a great resource for learning. It’s good to know there are other lines of treatment, even for the subsets of non-Hodgkin. They didn’t know which one I had when they sent it out to Utah so I was looking around.

My oncologist helped point me in the direction of The Leukemia & Lymphoma Society and social workers. I had my therapist.

The more I reached out to others, it helped, even though they could be in another country. Simple advice of MiraLAX the day before or this lotion because of rashes. The loneliness subsides a little bit when you know that you can reach out or get advice.

I’m not sure how I got through that loneliness before I was diagnosed because no one was listening until I got the results. I had to get the results to prove it was time to actually do something about it. I really had to fight the first portion of the loneliness.

This portion that I’m in now is like the world is happening without me and the whole world is living. It comes day to day, person by person, or connection by connection. Having a regular conversation will carry me through the next few days.

My therapist is hardcore. She does not like crying. “What if it doesn’t work?” She doesn’t like any of that stuff. Pick your therapist how you want, but I needed a drill sergeant because I could go down a rabbit hole.

It’s not me against chemo and cancer. It’s me and chemo against cancer.

I’ve reached out to moms and other women because I see them saying, “How do you do this when you have a three-year-old?” I have one, four, and seven. If you’re married or you have a partner, they can help as much as they can, but you want to be part of everything.

People imagine the worst. They’ll never pick up their baby. They’ll never be able to breastfeed. Some women get diagnosed while they’re pregnant. Some women receive ABVD while they’re pregnant. It’s a testament to the strength of women.

When I reach out, it feels better. I don’t know anything, but I do know what my experience was. It does help even if it’s not the same.

One woman had all these stomach issues and it’s because she was taking stool softeners in pill form. They sit in your system, as I’ve learned, and they don’t go through your system like regular liquid. The pain is unbelievable.

You feel lonely and even though you might not have the same side effects, it’s better to know that there are other people and you can talk to them. That’s why I was all over The Patient Story even with people with different cancers because I was so desperate to not feel alone.

The earlier you get ahead of anything, you’re in control a little bit more. When you’re sick, you feel out of control and I think that that’s a huge thing.

You have those days where you just sit in bed and the whole world is outside. I can’t even tell you how many times I hear everyone outside, it’s a beautiful day, and I couldn’t even move. I was a wreck.

Change your overall environment. Instead of rotting in my room, I try to move to the porch for a little while so I can see or talk to people. I don’t like when people come up to me when I’m feeling really sick.

I don’t want to feel left out of the world because you do feel left out of the living world. As much as I want to say that it gets better, I don’t know if it will if I don’t proactively do something about it.

I have three kids and a husband and sometimes, I feel very, very alone in this house. They have to do things. They have to be happy. They have to live.

Remember that it’s up to you to reach out. Have a conversation. Find someone that has something similar. I haven’t done any in-person support groups, but I have loved The Leukemia & Lymphoma Society and its online boards. I can’t believe how many older people are on there giving really wise advice.