Hodgkin Lymphoma Stories
Nodular Sclerosis, Stage 2A
“Advice that I always share with folks is just stay as positive as you can. Certainly there are going to be really hard days, but try to find the silver linings and the simple pleasures - just take one day at a time. As much as you can, stay in the present moment. Very much easier said than done, but it’ll help you stay grounded.”
Diagnosis: Hodgkin Lymphoma
Specific type: Nodular Sclerosis
Age when diagnosed: 23
lump above collar bone
12 treatments of ABVD for 6 months
Chemotherapy after relapse
Preconditioning ICE chemotherapy
Stem cell transplant
Table of Contents
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What were your first symptoms?
My first symptoms were itchy skin and an enlarged lymph node. My belly itched, my arms itched, everything itched so much it motivated me to go to a dermatologist’s office. It was kind of unbearable and really distracted me at work. At the appointment I mentioned I felt a lump over my collar bone that was getting bigger, so I asked her to check that out as well.
What do you remember of that first visit to the doctor?
When I was at the dermatologist, she just physically examined the enlarged lymph node - I didn’t even know that’s what it was at the time. She had told me that she remembered the day in medical school when they had told her if someone young comes in with super itchy skin, not to discount them immediately or to think that it’s maybe just eczema -
She recommended that I go see a general practitioner; she called me twice the following week to make sure that happened. I went to a general practitioner and that’s where I got chest x-ray and blood work. The chest x-ray right away showed a mass in the chest as well as the blood work an elevated sed rate.
How long did it take to get the results back?
It was pretty much the next day. It was either one or two days.
How did you learn of the diagnosis?
From the general practitioner I went to an ENT doctor, who then recommended that I go and see a head and neck surgeon who did a needle biopsy. It was from the needle biopsy that they were able to confirm the hodgkin lymphoma. To stage it and know exactly what type - I had nodular sclerosis - they did a tissue biopsy and it showed that the reed sternberg cells were there and that’s how they’re classified. That’s how I found out - from the needle biopsy and the tissue biopsy.
What was your reaction?
I was just about a year and a half out of college and I was totally devastated.
I remember my mom was with me at the head and neck surgeon’s office and I kind of collapsed in her arms and told her that I didn’t want to die. I think that really was my biggest fear, that I felt like I had so much life to live.
How did you break the news to your loved ones?
Mainly in person and on the phone. This was almost 12 years ago, I was diagnosed in December 2007, so how connected we are through Facebook and Instagram just - Facebook was only a year old. I kept a few people updated by email.
Did you get a second opinion?
I did. I went to Memorial Sloan Kettering to get a second opinion and they recommended the same treatment protocol. Luckily it’s just pretty standard course of treatment that people recommend at least at that time. So 6 months of chemotherapy, 12 treatments of ABVD chemotherapy. At the time, Memorial Sloan Kettering didn’t take my insurance so I went to a private oncologist who had been there for 17 years and had left somewhat recently to start his own practice. I felt really grateful to be somewhere where I was in really good hands.
Did you get your treatment through your private oncologist?
I did. I feel so grateful for that because he was the one who administered all my chemotherapy, which is very rare. Usually it’s a chemo nurse but he was the one who did all my treatments. I would go get chemotherapy and then go to work after
What did your treatment consist of?
The first time was the 6 months of chemotherapy, 12 treatments of ABVD, and that was from January through June of 2008. I was luckily able to still work full time.
I was able to work so I felt grateful for that. At that point I was 23/24 - I celebrated my birthday in April that year.
Was there anything you wish you had known at this point?
Not necessarily. I think the biggest thing was that I wanted to know I wasn’t alone. That was one of my first questions - who can I talk to and who’s been through this.
What was your experience with chemotherapy like?
With the chemotherapy, I definitely had nausea, fatigue, I lost my hair - those were the biggest ones. It kind of impacted my day to day. Luckily I was able to still work but looking back, socially there were different things I did. I had just moved into New York with two roommates and I was so excited to take on the city and enjoy all that it has to offer. At the time I had to rest a lot, so it impacted me in that way.
How did you deal with the side effects?
Just trying to be patient and kind to myself.
I felt like I was missing out but yeah I dealt with it by surrounding myself with really good people - friends, family - and through this experience the power of community was shown to me in so many different ways.
What happened after your first round of treatment?
I was declared in remission that summer, and I was in remission for 6 months. I trained for my first half marathon. A few friends of mine decided to fundraise for leukemia and lymphoma society and run a full marathon and they inspired me to run a half marathon. I signed up for a half marathon and completed it, and that was January 2009. The weekend of the race I actually felt the lump on my collar come back. I ran the Disney World half marathon and I had a huge group of friends that flew down for it and it was so special.
When I learned that I relapsed, kind of crazy enough, I had started working at Memorial Sloan Kettering Cancer Center in the development office in fundraising and event planning. I had just started a new role there three months prior and I actually never even mentioned I had cancer.
During my interview I wore a wig; I wanted to be hired for myself and my skills and talent. I was, but at this time of year I also didn’t think it would come back - it’s not all that common to relapse. I mean it happens certainly but I thought everything was behind me. Unfortunately it came back and I had to leave work for 6 months because treatment the second time around was a lot more intense.
How did you feel when you found out about the relapse?
So devastated. My dad was with me actually and I just had always kept this little notebook where I took all my notes when I had different doctors appointments. I turned the page of my book and I just wrote “Round 2” and I was ready to go. There’s just no choice. I felt very grateful that I’m in one of the best cities for healthcare in the world and the fact that I was actually working at Memorial Sloan Kettering as an employee and in the best hands possible, truly. I was obviously devastated and so much more scared the second time because the fact that it had come back was really scary.
I tried to stay as positive as I could. There are certainly hard days and hard weeks.
I had severe throat sores so I was on a PCA pump, patient control, and a pain pump, so I would press the pain pump a lot, every 7 minutes. We would set a timer so I would get the most pain medicine that I could. It was a tough go there for sure.
Then slowly they start to rebuild. I needed several blood transfusions during that time too.
It just was so tough. My mom stayed with me almost every single night in the hospital so she was my sidekick. I just got through it one day at a time.
5. Round 2
What was your treatment the second time?
I had two preconditioning chemotherapies, they called it ICE. I had two rounds of those, so I was in-patient for three days each during that. Then I had a scan and all was looking really good so they were able to move forward with the protocol.
Then I went back to work in August.
Can you describe the stem cell transplant?
I had an autologous stem cell transplant and that’s when they take the stem cells from your bone marrow. Stem cells are blood cells that haven’t decided what they want to be yet, they might be red blood cells, white blood cells, or platelets. That is very important in a disease. Luckily my cancer was not in my bone marrow. Often times you will hear people need donors and that’s an allogeneic stem cell transplant. Because the cancer was not in my bone marrow, I was able to have my own stem cells transplanted.
So I had a collection over a couple days and then from there they freeze them. When you hear the word transplant you think of lung transplant or heart transplant and it sounds super scary. With this, literally all they did was through a chest catheter where I had the chemotherapy coming in and any blood transfusions - that’s where the stem cell transplant happened. They essentially had a vial of my stem cells and they were pushed back in through that chest catheter.
How was your experience with the stem cell transplant?
Pretty uneventful actually.
So it has a lot of meaning, certainly, but on the day of it was pretty uneventful. They brought them in on the ice and there it was and in the stem cells went. It was very quick to be honest. It was a very quick procedure - I don’t even think you could call it a procedure.
How was chemo the second time?
I had two rounds of the preconditioning chemotherapy, ice, and I was in the hospital for three days each for that. Then in the midst of my hospital stay, I started my stay during my second week of radiation - it was more intense that second week . Then I started my five days of high dose chemotherapy. That’s when you’re just on the chemotherapy continuously at a really high dose. Then you have a day of rest and then they give you the stem cells back.
What were the side effects?
High fevers, throat sores, lost my hair again, and extreme fatigue.
What was radiation like?
I had two weeks radiation. It was tiring - very quick. I have six radiation tattoos on me - four in the front and one on each side. The process to get it set up is pretty elaborate and so specific. That’s why you have to have the tattoos because it’s so targeted. It’s really quick - you’re in their for just a couple of minutes and I went twice a day.
I was tired, but it was like a cumulative effect. Often times folks have radiation for five or six weeks, and that’s really pretty rigorous. But for me, it was just the two weeks and there’s also the fact that it was not too far after the ice chemotherapies.
What was the fertility preservation process like?
I remember feeling grateful that I had the opportunity. In 2009 when I froze my eggs, it was still considered experimental. They lifted that in 2012 and it’s made such advancements since then, especially in these last handful of years. Now you can hear just ordinary humans that aren’t married yet or haven’t found their partner yet freezing eggs, which is pretty interesting, how the landscape is changing.
Just in general I think society and our culture, we’re skewing to have children later in life. I just read something where in 1980, it was less than 8% had their firstborn over the age of 30, and now in 2005, that number was almost 30%. We’re realizing more and more that we have families later.
Physically you’re giving yourself all these hormone drugs to stimulate egg production. I didn’t feel all that great. I was staying hopeful but I was able to retrieve 24 eggs, and they’re frozen still.
7. Quality of Life
How was your experience with hair loss?
It was expected so I can’t say that I was super shocked that it happened. They had told me that I’d likely lose my hair. It was so hard just because you really look sick. I felt like a shell of myself but I did have a wig the first time around, and that definitely helped me feel a sense of normalcy.
My hair grew back fairly quickly. I just ended up rocking the hair that came back in - I never wore the wig again.
Were there any big surprises during treatment?
I was so surprised that the cancer came back. I felt like it was behind me and I was excited to move on, so that was definitely surprising. I was grateful that I was able to preserve my fertility. That was something I went through right before treatment the second time. I was advised to freeze my eggs, so that was something I went ahead and did.
I also wasn’t dating anyone at the time so it was kind of hard.
What was the lowest point you experienced?
I think just feeling so terrible that I wasn’t able to do much. Everyone knows when you’re sick, knocked out by the flu or whatever, it’s so debilitating. It’s hard to do your regular day to day thing, even your fun magical adventure things - that was really hard for me.
What helped you the most during your low moments?
Community - my support system was amazing, my family and my friends, they’re the ones that really lifted me up. I remember the summer I was recovering from the transplant. I don’t think you’re supposed to fly a couple months after the transplant but I was able to get the okay from my doctor.
I remember I was visiting a friend, she’s in chiropractic school. I was so excited I could get on a plane and visit my girlfriend from college and just have a great weekend. I think just being around people really lifts me up. I love music, I love reading, and those were things that really helped.
Were there any moments where you had to advocate for yourself?
I think just in the sense of always asking questions. The treatment protocols can be really overwhelming, so just wanting to have a good sense of what was happening when, how, and little bit of the why. It’s a little bit hard for them to fully explain the why. Nothing stands out really in particular but I’d say just overall feeling empowered by asking questions, whether it be about timing or side effects from the treatments.
How important is it to have caregivers?
It’s so important to have caregivers. I think just going through something like this physically and mentally is really taxing. It’s overwhelming and information overload. When you get in that doctors office, I always made sure I had someone with me, I had my list of questions, and my awesome little notebook that I kept.
It’s just another person who is advocating for you and also caring for you.
I celebrated my 25th birthday in the hospital and I moved home. I grew up about an hour north of the city, so I had somewhere to go. I was close to the hospital for any issues and any follow-up appointments which I did have a lot of. I was able to recover at my parents’ house. It’s difficult when some folks might not have to that and you really have to rely on others, especially when you’re recovering from the stem cell transplant.
You really have to be mindful of infections. You really have to rely on other people to do a lot of things for you that you normally would be able to do for yourself.
Were you able to ask other people for support?
I had my sister too, so she was wonderful. Actually crazy enough that the time I was in the hospital, she was 9 months pregnant and gave birth to my first nephew. He luckily was born a couple days after I got out of the hospital. I remember being like “I need to be there for this, I can’t miss it,” I just felt so trapped. Luckily I got out and I was probably not supposed to be in the hospital to see him, but I did short, quick visits.
I remember just feeling so connected with my little nephew - now he’s 10.
My sister organized a blood drive for me. I mentioned that I needed blood transfusions, so blood cells and platelets which are in that category. So she motivated folks to come to Memorial Sloan Kettering, their blood donor room, and donate blood for me. Even if it wasn’t necessarily used directly for me, it was used for other patients in the hospital, because they only have a certain shelf length. It never went to waste.
My friends ability to show up and support me, whether it be phone calls, emails, or little packages. I remember at the time there was a program called “Spirit Jump” - it doesn’t exist anymore - but basically you submit your story or someone can submit int on your behalf, and then it’s shared with this community and I got letters and little gifts from people all over the country. They said “We’re cheering you on! We can’t believe you just ran a half marathon! You're such a rockstar and you have more cheerleaders than you know!” I got these really kind notes from all over the world, so that’s something that I’ve kept with me.
Did you work through treatment your second time around?
No. The second time I left work for 6 months - I was out from February to August.
What was the financial aspect like?
Luckily, the first time around I had really good insurance coverage. The second time around as well, since I was an employee at Memorial Sloan Kettering, I was treated for free, and that was huge. During the fertility preservation, I was lucky enough to receive a grant from an organization called Fertile Hope. They have been since acquired by Livestrong but that was a huge piece of my ability to cover the fertility preservation - the treatments and the collection.
Was there anything you wish you had knowon about the financial process?
I think that just in general with the healthcare system, you never know when you’re going to pay for anything. The claims get submitted and you have no idea how much is really going to get covered. It’s pretty nuts because when do you go into somewhere not knowing what you’re going to pay? We go into restaurants and you know what you’re paying for a meal, or you go to a store and you buy something, you know how much it costs.
I don’t know if there’s much to know. Certainly if you know you’re going for an office visit, you’re going to pay a copay, but I’m talking about different tests and stuff like that which aren’t fully covered. Sometimes you don’t even know what percentage will be covered and then you get the bill in the mail. I think the lack of transparency and information sharing prior to moving forward with whatever it is, is really strange and I’m hopeful that maybe it’ll change over time.
What is the new 'normal' following cancer?
It took a while to recover from the stem cell transplant. I was able to get back to work, but physically I was definitely pretty run down. I eased back into exercise and yoga and running. Running was such an important part of my life, so I really wanted to get back to that. About a year after my transplant, I started classes at a studio called Exhale in New York and I started taking bar classes. That’s kind of like core strength classes - you use your whole body weight to create strength.
I fell in love with the method - it really changed my life so much that I started teaching the method four and a half years ago. Fitness had become a huge part of my recovery and I’ve ran 7 half marathons and 2 full marathons fundraising cancer research. I ran my two marathons with Fred’s Team. Fred’s Team is Memorial Sloan Kettering's athletic endurance program and you can actually have your funds allocated to any area of cancer research that you choose. So I chose lymphoma one year and I chose the survivorship clinic and program at the hospital.
My hope was just to really give back. I’ve been involved here for 9 years at the hospital. I work with patients and their families listening, giving any guidance and insight that I can, and that’s been really meaningful. I also speak at nurse orientations and new employee orientations, sharing my story from a patient perspective.
What advice do you have for patients going through a similar experience?
Advice that I always share with folks is just stay as positive as you can. Certainly there are going to be really hard days, but try to find the silver linings and the simple pleasures - just take one day at a time. As much as you can, stay in the present moment. Very much easier said than done, but it’ll help you stay grounded.