Alexandra’s Stage 4 Hodgkin’s Lymphoma Story
Alexandra, a stage 4 Hodgkin’s lymphoma survivor, shares her journey of diagnosis, treatment, and reflection. Initially experiencing symptoms such as weight loss, night sweats, and hair thinning, she attributed them to stress from a breakup. It wasn’t until swollen lymph nodes appeared that she sought medical attention. Biopsies confirmed Hodgkin’s lymphoma.
Facing an abrupt transition from teaching to undergoing chemotherapy, Alexandra navigated the challenges of treatment. From the shock of discovering her cancer had progressed to stage 4, to managing side effects like nausea and hair loss, her journey was marked by hurdles. Yet, through perseverance and support, she found ways to cope, embracing activities like painting and caring for a puppy to uplift her spirits.
Reflecting on her experience, Alexandra emphasizes the importance of being an advocate for oneself in the medical journey. Despite regrets about fertility preservation options not being fully explored before treatment, she finds solace in newfound perspectives and maturity gained from her battle with cancer. With a message of hope and resilience, she encourages others to lean on their support networks and find sources of joy to navigate their own cancer journeys.
- Name: Alexandra G.
- Diagnosis (DX):
- Hodgkin’s lymphoma
- Staging:
- 4
- Symptoms:
- Hair thinning
- Night sweats
- Weight loss
- Swollen lymph nodes
- Treatment:
- Chemotherapy
- ABVD
- 6 rounds, 12 sessions
- ABVD
- Chemotherapy
What I went through at such a young age is a blessing because I have been given so much insight into the world around me, and it’s changed my perspective.
Alexandra G.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms
Tell us about yourself
My name is Alexandra and I’m a stage 4 Hodgkin’s lymphoma survivor. I was diagnosed back in September 2020, and during that time I was a full-time teacher. I stopped teaching and began painting. Now I’m a full-time artist.
What were your first symptoms?
I went through a breakup. I was with this person for about 5 years, and that was in November of 2019. I was super stressed, as most people are during a breakup. Around the same time, I started to lose weight and experience night sweats. My hair was thinning out quite a bit. My hairdresser asked, “Are you healthy? There’s something different about your hair texture.”
I noticed all these little symptoms, but I thought they had to do with the breakup. I thought, I’m just stressed. That was in November. In July, I noticed I had swollen lymph nodes on my shoulder. I have a lipoma here, which is just a fatty tissue deposit, which I had gotten tested a year ago. It’s non-cancerous. But my swollen lymph node was right beside it. I was like, that’s weird. Why is this one hard and this one soft? I couldn’t quite figure out what was going on. Then another swollen lymph node happened around here [on the neck] and then one at the back within 3 days.
Did you visit the doctor for your symptoms?
I had gone to my doctor within 3 days of getting the swollen lymph nodes. Right away they began testing. I had an ultrasound and it came back abnormal. They said the shape of the lymph nodes was off, so they wanted to do a more in-depth ultrasound. I went back for another ultrasound and did bloodwork. Nothing in my bloodwork appeared, which is strange for a blood cancer. You would think something would show up, but it never appeared until the day before I started chemo.
Now I get bloodwork every 6 months to make sure I’m still in remission. That’s how we determine it. It drives me insane because I’m like, my bloodwork didn’t show cancer for months.
I got an MRI and then biopsies that they had to do to diagnose Hodgkin’s lymphoma. They did a needle one and it came back inconclusive. Then they cut, which I have a scar from, and they took a tissue sample. That’s how they were able to diagnose it. I have a little bit of a different mindset about it.
I had an ultrasound and it came back abnormal. They said the shape of the lymph nodes was off.
Diagnosis
Describe your biopsy experience
They freeze the area, but you’re awake during it. I’m chatting away to the doctor, and he was lovely. They said it could take up to 2 weeks to get the results back. He got back to me right away. Then they gave me the option – would I like to do the needle one again to avoid scarring, or do I want to just get cut and get a tissue sample? I was like, just cut. Let’s just get this show on the road. I got two biopsies within 2 or 3 weeks, but that was what gave me the definitive answer.
Receiving a stage 4 Hodgkin’s lymphoma diagnosis
I had just landed my dream teaching job right before COVID. I wanted to teach at my elementary school and I got a job there full-time. Then, on Friday afternoon, I was at school. I was on my way to my classroom when I checked my phone and saw it was my doctor ringing. He always called on Friday afternoons.
Within a week and a half, they told me it was stage 4.
I answered it and he said, “Alexandra, good news and bad news. The good news is I’ve got an answer for you and it’s a good type of cancer. The bad news is you do have Hodgkin’s lymphoma. You gotta pack up. You’re not teaching anymore because you’re going to start chemo in 2 weeks.” I headed home and told my mom.
»MORE: Reacting to a Cancer Diagnosis
Treatment
Preparing for chemotherapy
The lead-up to chemo was doing all this testing to make sure my body was strong enough for chemo and also to see how far the cancer had progressed. I had to undergo testing of my lungs and my heart. I did the PET scan to see how far cancer had traveled. Within a week and a half, they told me it was stage 4, so that was surprising. I was thinking I was stage 1 or 2 because I could feel the lymph nodes here, but I couldn’t feel them anywhere else. I had cancer in my neck, my lungs, and around my spleen, that’s what made it stage 4 Hodgkin’s lymphoma.
When I went in, it was a Thursday, and my doctor said, “You’re starting treatment tomorrow at 8 a.m. Be here at this time.” It was like, oh, wow. I wasn’t expecting it to happen that fast. In a way, it’s good because it didn’t allow my brain to think about it.
Did you have side effects on chemo?
I did ABVD. I didn’t have radiation or surgery, just 6 rounds of chemo, and 12 treatments. The first chemo that I went to, I was like, this is a walk in the park. I’ve got this. I guess your body’s not used to chemo yet, so it was fine. As time went on, each chemo got progressively worse. I dealt with a lot of nausea.
Around the second chemo, I woke up and I was like, oh, I don’t feel well. But it’s all in my head. I’m gonna push through, have a shower, and get ready for my day. I ended up passing out in the shower because my blood pressure was so low and I was trying to push my body to be mind over matter type of scenario, which I shouldn’t have done. I learned pretty quickly, that this is pretty serious.
By chemo 4, I was experiencing a lot of shortness of breath from one of the chemo drugs I was on. I was hospitalized at that point.
Did anything help with the chemo side effects?
They did lower my dosage of that chemodrug. My main thing was nausea. I experienced a lot of nausea, and I felt like the medication I was taking masked the nausea but then they would cause other side effects. At one point, I counted 12 different medications I was on because they kept masking the symptoms. I didn’t love that.
I never have been a napper, but during chemo when I was dealing with the nausea and mentally drained from it, sleeping was the best cure. I did have home hydration, so staying hydrated helped. I felt like drinking water was making me more nauseous, but the IV through my PICC line for hydration helped.
As time went on, each chemo got progressively worse.
»MORE: Cancer Treatment Side Effects
Also, food would make a big difference. You get this weird metallic taste in your mouth and certain foods weren’t sitting well. It took me a few chemos to realize if I don’t eat a lot during these 4 or 5 days, so be it. I would eat a ton the week after when I was feeling good. I did a lot of binge eating, but that’s what worked for me. It was just listening to my body.
I had gotten a puppy at the time so I was taking the dog for walks and going for hikes. I monopolized my time off of chemo to be active outside. That helped with my mental health, too.
Remission
Did you lose your hair from chemo?
During my first chemo, I had a girlfriend who cut hair. I had long blonde hair and she cut it short and dyed it hot pink because I knew I was going to lose my hair. A cute little pink bob, which I loved. Around chemo 5, I started to lose chunks of hair and shaved my head. I did have a shaved head from chemo 6 to 12 at the end.
I was always someone who loved to play and do my hair. I loved updos and curling it. I was extremely upset to lose my hair, not just for my physical appearance, but also because it was a hobby and creative outlet for me. That was one of the worst parts, and I feel so shallow saying that, but it was.
The good thing is, that hair does grow back. I did buy a nice wig that looked pretty much like my bio hair. That was my safety net. I did wear that a lot. Looking back, I wish I embraced the baldness, but that was what gave me comfort. I wore that wig a lot.
Was chemotherapy effective?
Right after treatment, I went for my one PET scan and they’re like, “Okay, it looks good. You’re on your own. See you later.” My mind was blown. I was moving out [of my parents’ house] that next week, I just finished chemo, and I had a new home. 3 months after that, I went for a scan. Now it’s been every 6 months for 5 years, and then I’ll be cleared.
»MORE: Learn More About Cancer Remission
Reflections
Did you preserve fertility?
That was one of the first questions I asked my doctor was about fertility because that was so important to me. He said not to worry. Lots of patients on this type of chemo will go on to have children later in life. He gave me examples of clients. My doctor was pretty dismissive of the conversation.
When you’re diagnosed with stage 4 Hodgkin’s lymphoma and your doctor tells you, “You’re going to be fine. Let’s go into chemo,” I went ahead and started chemo. Looking back, I wish I had pushed to get my eggs frozen at that stage. Here in Canada, if you get your eggs frozen, it will be covered.
When I finished treatment, then I decided, now I wanted to see what my options were. I went through fertility testing on my own after treatment. I only got about halfway through the testing because it started to get super expensive. To get your eggs removed and frozen on your own is pretty risky on if it will actually work and also it’s super expensive. That’s when I found out that if I had done it before treatment, it would have been covered. I was really upset that information wasn’t given to me beforehand.
The importance of being a patient advocate
You do have to do your research. When your doctor is telling you information, it’s all new. You don’t have time to process it. You need to make sure that you go home and research so you feel brave enough to go with your questions and push for correct answers. I do think it’s wise to Google and to ask other people in the medical field and get second advice, because it’s only going to give you knowledge, and knowledge is power.
Do you have any advice for others on their cancer journey?
What I went through at such a young age is a blessing because I have been given so much insight into the world around me, and it’s changed my perspective.
Find those people around you who truly care about you and are there for you during that time. I do find that what I went through at such a young age is a blessing because I have been given so much insight into the world around me, and it’s changed my perspective. There are a lot of silver linings with it. I think I’ve matured way faster than a lot of people my age have, and I’m thankful for that.
Find something that’s gonna get you up in the morning and get you excited to still be alive. For me, it was art and getting a puppy. The doctor said, don’t get a dog. But the dog got me outside, got me walking, and made me laugh. Being around people who care about you I think is the key to getting through that time and knowing that there is an end. It is going to get better. I’ve gotten through it and I’m proud of myself for getting through it.
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