What really brought me to the doctor was a lump on my neck and he immediately did tests — MRI, bloodwork — and it came back as lymphoma.

Stephanie, The Patient Story: You had described feeling during that time, the run-up to getting the actual diagnosis, like you were trying to tell people, “I have all these things that I’m feeling. I know it’s not right.” Can you describe what that felt like for you?

Delishea: It felt like I had to really talk my way through it, constantly let them know that this is not normal. It took a little bit.

Each symptom seemed like I could discount the actual symptom for something else.

Delishea A.

Stephanie, The Patient Story: It can be hard to fight through that. Erica has a very specific situation, too, in terms of a cultural difference where you felt really unheard. Can you talk about what happened there?

I started exploring different doctors until a friend said, “Why don’t you just look within the network that you’re in? Maybe there’s another oncologist.” It’s already uneasy, but my primary concern was that I wanted to be heard.

I was fortunate enough to find a doctor who was willing to do that. Basically, they said the same thing as the first doctor, but their statements were presented [differently]. He explored some of the things that I wanted to look into.

Stephanie, The Patient Story: I want to highlight that because it seems small. At the end of the day, both doctors agreed essentially on the same thing. They had the same opinion about treatments. But one doctor dismissed you right off the bat because they [didn’t] know about this cultural thought process with treatment. The other one, what did it mean? What is that difference? It seems minor, but it’s pretty big.

My primary concern was that I wanted to be heard.

Erica H.

Erica: It was big because it just showed being able to advocate; that was really important for me. I’m an admissions consultant so I teach students how to self-advocate. Now, I was actually putting into practice for [myself] in a health crisis. I know that they are the experts in [the] medical field but I am an expert on how I feel.

Shared Treatment-Decision Making

Stephanie, The Patient Story: Shared treatment-decision making: what does that mean? It means that it’s not just one-directional. It’s not the medical team only and the doctor only. I’m part of this. This is my life. I know that you have the training, but I want to be empowered in my care.

Kelsey, [your story] is actually a really great example of advocacy. If you could give a little [background] of what your treatment was, the impact, the side effects you were feeling, what got you to research, and the impact of the research.

Doing my own research and changing treatment path

Kelsey: I had stage 2A Hodgkin’s and was prescribed ABVD chemo — I believe it was four cycles, eight treatments total. After, I think, my fourth treatment, I ended up in the hospital with neutropenic fever. I experienced really low white blood cell counts during my entire course of treatment, starting right after my first chemo.

I picked up something small [and] ended up with pneumonia over Christmas.

Kelsey R.

I did some research and I found some recent studies that had shown, I believe, people who had 12 total ABVD treatments, so six rounds, if they were clear after their second cycle, then the Bleomycin could be safely removed from the chemo. I brought that to my doctor and said, “I know this isn’t my exact situation and I have fewer treatments, etc., but do you think that this would work for me so that I could add Neulasta so I don’t end up in the hospital again? Because I feel, at this point — because I’d already had a clear scan — that that’s a greater risk to my health.”

My doctor agreed with me and actually commented that he’d just been discussing that research at a conference he’d just been to. I removed that from my regimen and I’ve been in the clear for five years almost so seems to be fine so far. I remember his wording exactly was, “Yeah, that makes a lot of sense.” That worked out for me and I was able to take the Neulasta to get my white blood cell count up and did not end up in the hospital again.

Once I ended up in the hospital — it was a really nasty flu season — the doctors were being so careful with me and that really freaked me out. That time in the hospital was really, really rough. Before I was able to get the Neulasta, I lived in isolation, which I was doing already. I’m pretty sure I picked this up in line at a pharmacy actually.

I remember my dad would wipe down the cup when we stopped at the gas station. You feel extremely vulnerable and I was so terrified that someone I would come in contact with had a roommate with the flu or something because that could have been really, really bad for me at that point.

Stephanie, The Patient Story: You had no defense systems.

Also, you had research experience, being in grad school, so [you had] access [and] the know-how to research this stuff, but what about other people who don’t have access? You were able to empower yourself with that knowledge, you brought it to the doctor, and that started this very important cascade of events. Any last thing you want to say in terms of the ability to research and know? What got you to speak up? Did it take much?

I remember asking, ‘Can I just not receive the Benadryl?’ The side effects from the Benadryl, I notice more than the side effects from the chemo

Tylere P.

Stephanie, The Patient Story: Tylere, I know for you it was a little bit different. During one of your treatments, they had Benadryl — a very common medication that’s given to help avoid allergic reactions but for you, that was kind of the problem. Can you share that with us?

Speaking up about medication side effects

Tylere: Going through the chemo, I never had any bad side effects. I still had an appetite. The worst thing that happened was losing my hair.

I remember getting Benadryl one day before they were giving me chemo and I was knocked out afterward. I would drive myself to my chemo appointments and the hospital was about an hour away. This is when the cancer relapsed.

It took about an hour, an hour and a half, for the chemo that I was on, and then I’d have to stay for an extra hour and a half just for the nurses to feel comfortable letting me go home because of the Benadryl. They didn’t want me [to fall] asleep while I was driving, which is great, but I also didn’t want to be in the chemo chair any longer than needed.

Tylere: Being independent, I like to do things on my own. I didn’t want to have a friend or family have to be with me during chemo and be an inconvenience for them. Mentally, it was nice to be able to do things on my own. If I’m able to go get chemo by myself, that’s fine. I was there every couple of weeks for over a year plus. It wasn’t anything that I wasn’t used to.

The first few times getting treatment, I had friends and family there. After that, I was like, “Well, I don’t want you all waiting around for four or five hours.”

Stephanie, The Patient Story: Being able to speak up for yourself in that instance allowed you to have control of that again because otherwise, you’d be, “I need you to drive me.”

Being independent, I like to do things on my own.

Tylere P.

Stephanie, The Patient Story: Moms are great, but there is a balance, right? It’s wonderful getting that support, but at the same time, does it feel like I have to manage other people’s feelings, too?

Delishea: Yes. Big time. When going through it, your emotions [are] all over the place. I don’t know if it was the chemo, the anxiety, [or] all of it together. My caregivers and my support system [were] going through it with me so I was very cautious of their emotions, too. I don’t think anybody knew how to handle it.

A lot of times, I would bring my earphones and listen to music or just be honest. “I don’t feel like talking. I don’t feel like being bothered.” They know me [and] my personality so I didn’t think they were too offended, but I have to set those boundaries. I’m still processing what I’m going through and I don’t have the mental space to nurture your feelings about it, too.

I was in a conference room at work and had all my co-workers around me. She called and said, “You remember when I said worst-case scenario?” I said, “Yep.” She goes, “Yeah, so it’s going to be [the] worst-case scenario.” My response [at] that moment was, “Oh, okay, great!” Because I’m literally surrounded by all my co-workers and I haven’t really told them what’s going on yet.

Dealing with my mom being a nurse practitioner [is] like a blessing in disguise. A lot of the more medical questions or things that could or could not happen, I leave that up to her. If I had questions that the doctors were asking, I ask her in more detail afterward.

She called and said, ‘You remember when I said worst-case scenario? It’s going to be worst-case scenario.’

Tylere P.

We had a long conversation one day [with me] saying, “I just need you to not come to these appointments. It’s not good for me mentally. It’s not good for me emotionally. I just need to be in a good space. Basically, I moved back home to make this easier on you all.” Originally, I was going to go to Houston to be treated but came back to Michigan to make it easier so the family didn’t have to travel in case they needed to be somewhere for me.

I was already withdrawing a lot from my emotional bank to be back home. I said, “If there [are] questions that you feel like I need to be asking the doctor, I will talk. I will tell you after I get back from the doctor.” Give her a summary of what happened [and] what questions I asked… If there’s anything that she wanted to ask going into it, I could ask them. If she didn’t feel [the] questions I was asking were adequate, then we could have another discussion about that.

Having a hard conversation

Tylere: I wish I would have had that conversation sooner of just being upfront about it.

We’re coming back from an appointment and she’s like, “Why are you so quiet? You never talk on these rides.” I was like, “Well, I just got chemo. I guess I’m tired and I just had that Benadryl so I’m out of it. I just don’t want to talk about it. I don’t want to think about it. I don’t want to discuss it. I just don’t want to be a part of it.” We pulled in the driveway [and] that conversation turned into an hour and a half about everything.

These are all thoughts that I’ve had before and I was just like, “I don’t know how to express these.” Writing down your thoughts is good, taking inventory of yourself — who you are, what you need — and then having that very uncomfortable conversation.

Erica: I’m fortunate my parents live nearby, only 20 minutes away. I do want to be fair to my mom. She did come to my first appointment and then it was too crowded in the room where I was getting treatment. It was a nice way for her not to have to attend since my husband was going to be able to go with me.

I can’t reiterate enough Tylere’s point about writing things down because I wanted to be independent as much as possible and I was able to control that [by] just reflecting on what I would need. Having a doctor as a partner was really helpful in figuring out where those needs would come up but it’s a lot on one caretaker.

I was diagnosed in September 2019 and my treatment was going to fall into the holidays. My husband was awesome. Getting to the appointments, he played a good music playlist and always kept an upbeat, positive environment while I was getting treatment. For the most part, I was able to handle a lot on my own when he was at work, but he was also working full time and it was the holidays. Because you’re immunocompromised, you have to maybe sacrifice a big family gathering.

Having a doctor as a partner was really helpful… but it’s a lot on one caretaker.

Erica H.

Erica: I was really writing intensely — an organization in Berkeley called the Women’s Cancer Resource Center had a writing group. There were things that I was giving to my dad specifically. There’s a cultural component, too. He was having a really hard time adjusting to the fact that I was going through this experience and I really wanted him to hear my needs and concerns. It was just difficult.

In that difficult conversation of being heard of what I needed and what I wanted, I just met what I needed. If he couldn’t respond completely to it, I recognized that and just said, “Okay, I’m going to be direct. Just make me juice. I know you love me and that’s enough. Everything else, we’ll deal with later on.”

Whereas my mom, it’s just different, our relationship, and that was really helpful to her to not get as emotionally charged. It was like, “You know what, there’s some paperwork. I really know you’re good at dealing with this, so can we sit down for an hour?” It was just logical for her to sit down and go through it. I didn’t have to invite her into the emotional piece unless I saw that she was ready for that.

The same was for my brother. Because my husband lives with me, he got all of it, which is why he was dealing with burnout. I couldn’t find any other way than to be direct with him. I said, “I get it was hard for you, and I know you know it’s hard for me, but I need you to go with your brother and watch football. Get away.”

Everyone thought it was weird that [my husband] would go and he was starting to feel guilty. It was the best thing for us because then he came back with energy and I had brought in my parents and my brother to step in for that.

I was able to choose [the] most organized, Type A people in my life. One friend put together a meal calendar where people would pay her and she would make me food [during] my chemo weeks.

My husband was not able to come to most of my appointments with me because he had a really unforgiving job at the time and my sister, I enlisted her to come with me because she’s also really Type A.

She actually caught a mistake where a nurse had weighed me incorrectly and was going to give me the wrong dose of my chemo that morning. That was really helpful to me, just being able to identify who can help in what way because my parents weren’t there and my husband was not able to help much.

Stephanie, The Patient Story: Having an extra set of eyes and ears in the room can be so critical. We’re overwhelmed. There’s a lot going on. We’re in the infusion chair and that’s a big mistake that could have happened.

Also, the people you have in your support circle [have] a different language. Some people are better at doing paperwork. Some people may be cooking. People want to help, right?

People want to help

Kelsey: Absolutely. That was the thing that surprised me. I don’t know why because I would gladly help my friends, too. But when my friend organized this meal calendar, people who signed up I maybe had one class with so that kind of community support people were really willing to engage in, which I was very, very appreciative of.

Different places, depending on the size of the hospital you’re going to, have different help. The LLS or Leukemia & Lymphoma Society is one organization that does offer some help.

Stephanie, The Patient Story

Tylere: Yes. Make sure you’re having those conversations. I remember having that conversation with our financial department. Why is it on me to appeal this bill? I’m the patient going through all this. Why do I have to deal with these insurance companies about all of this? Figure that out. You’re the one who wants that money. Go after the insurance company. You all deal with this every day. Why is [the] person [who is] going through chemo [the one] having to deal with this or having to put [the] family through this who isn’t versed in any of that?

Stephanie, The Patient Story: Right. Different places, depending on the size of the hospital you’re going to, have different help. Some have patient navigators, some have social workers, and you had talked about, too, researching some of the different resources that could be possible.

The LLS or Leukemia & Lymphoma Society is one organization that does offer some help. If you don’t have the energy, maybe have people around you look for that. [There] are different grants and stipends you can apply for — from co-pay to travel to urgent needs, which [are] rent, mortgage, lodging, child care, food, transportation, [and] so much more.

When I finally moved to a bigger center, I didn’t realize how much everything took a toll on me.

Delishea A.

Stephanie, The Patient Story: Yes, and so you had two very different experiences. The first hospital was very different in talking about mental health compared to the second one. Is that right? Two very different responses when they were talking about mental health.

Delishea: [At] the first hospital, that wasn’t even a discussion. It was basically just this is what you have, this is what treatment you have. The whole experience was lacking.

When I moved to a bigger hospital, they offered counseling. I wish I would have [taken] that opportunity. I didn’t realize how much it affected me.

We went through a hurricane and during that transition, my first hospital oncology center got damaged so I went through a period without getting any treatment — no treatment, not knowing where I was going to go.

When I finally moved to a bigger center, I didn’t realize how much everything took a toll on me. I had a panic attack one night. I knew I needed to talk to my doctor and be on some kind of anxiety medicine. Before that, I never really knew what anxiety was. I never had it that deep to where I was breaking down, so that was a big thing.

The doctor [said], “You’re too old. This is not going to happen. We need you to get treatment immediately because it’s going to explode.” It just was shocking having to forego an idea that I was planning on. The idea of exploding was really problematic for me.

Self-advocacy really played a role [at] that moment. I didn’t know who my next oncologist was going to be but I knew this was the oncologist who was holding me back from getting a second opinion on fertility treatment.

I asked, “I know this healthcare has a fertility department. Can I at least have a consultation with them?” He put me in touch with the fertility clinic that was part of the network, which was actually a really positive phone consultation. They just said, “We don’t know what happens, but you should go through the opinion of the oncologist.”

When I found my oncologist (that I went with) about two or three weeks later, I had the same conversation with them. Having already talked to the fertility department, he said, “I would just suggest you go through treatment because we don’t know what can happen.” He explained to me the process and I made the decision — just based on that conversation — to withhold it.

My husband and I had just been married for a year and we were in the stages of family planning so that was important for me to ask [about] receiving chemo.

Erica H.

Stephanie, The Patient Story: It’s just all these different experiences. Kelsey, did it cross your mind? You were diagnosed on your 26th birthday so there’s a lot going on. What was the consideration for you?

Kelsey: I was still broke, living with roommates, [and] just finished grad school. It really wasn’t on my mind. It wasn’t something my husband and I — or fiancé at the time — were talking about.

I actually had [the] opposite experience that Erica did. The doctors were really pushing me to explore preserving my eggs. I chose not to do that because I really just wanted to get on with treatment and didn’t want to go through another medical procedure. I was stage 2A so the doctors were able to give me a little bit of leeway there. I just wanted to get on with it. From the research I’d done — at my stage, with my amount of treatment — my chances of remaining fertile were pretty high.

Tylere, you talked about your experience and your parents supporting that decision.

Tylere: I was 24 when I was diagnosed so this was definitely something that was discussed. My mom was pushing more for it. She would love grandkids, but I have an older brother, younger brother, and younger sister, and none of us have produced a kid for her yet.

The deal was that they would pay for the sperm being frozen. As of today, it is a very expensive child and we don’t even know if we will use that frozen sample or not. But that’s something that we did choose to do. Having the parents’ support in that and saying that they would help financially was a big [deciding] factor.

Stephanie, The Patient Story: Absolutely. There’s a financial consideration to this, [like] their storage fees.

My mom was pushing more for it. She would love grandkids.

Tylere P.

Erica: I’ve now been in remission since March 2020. I take it a day at a time knowing that I can look forward and plan ahead on all things — family planning, building out my business.

What’s now part of my experience is being a resource and advocate for people who are going through cancer. I didn’t know that that was going to be part of my journey. Now that it is, I find it really important to advocate and make sure people know that there’s a whole network of people who are open to [talking] about it and [sharing] their experiences.

Stephanie, The Patient Story: Absolutely. Technology has been a big driver in opening different avenues of communication and figuring out your community.

I take it a day at a time knowing that I can look forward and plan ahead on all things.

Erica H.

Tylere: I always have a hard time with survivorship, especially having met so many other people who are no longer here with us, who went through similar things that I have. It’s just weird that I’m here, but they’re not.

That’s something that I was unaware of as I’m going through it and just being okay, cool, can’t wait to be done with this, and then we’ll never have to think about it again. Completely wrong. You will always think about this. Anytime you feel anything in your body, now that you are so attuned to what is happening, any little thing, you’re like, “Oh, and it’s back. We’re doing this again. Okay, here we go.”

It is nice being able to think ahead and not worry too much about some things. You can start planning ahead a little bit more. Even if you’re going through it, just plan ahead anyway. Focus on an end goal or on something longer term.

I didn’t know what lymphoma was when I was told and then found out it was cancer. [After] finding out I had it, I realized cancer was everywhere.

Be that person who reaches out and says, “If you ever need to talk, as someone who has gone through it, I would love to just talk to you about my experience,” and not be someone who’s offering solutions. Be a sounding board if you just ever feel stressed out. That’s how I handle it. Being a part of stuff like this is huge as well.

Something that I was unaware of as I’m going through it [was] you will always think about this.

Tylere P.

It’s really easy to downplay in your head the impact that things had on you, especially for Hodgkin’s lymphoma patients.

Kelsey R.

Kelsey: The first couple of years after I finished treatment, I was going through a lot of changes on top of this. I had to push back my wedding so I finally got married. I started my career. I had three of my grandparents die within the next year after so there’s a lot going on at once.

My way of coping with it was just to try to make my life as aggressively normal as possible. I stopped going out, stayed in, was just cooking dinner at home, and just [tried] to be in a domestic, relaxed space. It wasn’t until more recently that I started thinking more about what I [wanted].

I’ve picked up my freelance writing business a little bit more and I started — with my mom and sister — a vintage furniture business that we’re really working hard on. Those things were not things I did at the beginning.