Hodgkin Lymphoma Stories
“I want you to know that having cancer it changed my life which is an obvious thing but it created a whole new sense of self and a whole new life trajectory that I didn’t know was possible. I wish you all the healing and love as you go through this journey.
Sometimes off-roading is more fun. So that's really the new philosophy that I live with.”
Name: CC Webster
Reactive rash on neck and chest
ABVD chemotherapy regimen
12 infusions total
Table of Contents
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How was your health before the first symptoms?
I have never really been sick seriously in my life. I've always kind of floated by with a flu or a stomach virus or whatever. I'd never really been hospitalized. I never really had surgery. So sickness of this magnitude was not on my radar.
I was 29. I was very active. I was going to SoulCycle, I was drinking green juices, and I'm very well-hydrated. I thought I was doing everything right. I'm at an age where I felt comfortable pushing myself and working late nights and taking that next promotion. Did I skip a meal every now and then? Yes, but basically I was putting my whole self and all of my energy into my career at that point, my relationship, my social life, and still maintaining my understanding of wellness at that time. I was on par with everybody else my age. I wasn't even working the hardest. I wasn't even in finance. My husband would pull all-nighters. He's totally healthy.
What were your first symptoms?
I could probably date the symptoms to maybe six months before I actually got diagnosed, looking back now. The first symptoms came in the summer before I got diagnosed (February of the following year). I started to get a reactive rash on my chest and my neck. I went to my local city MD, which was my regular doctor and my care center, because I really didn't need that much.
They would give me steroids to take it down and it would go away. The further into fall we got, I started to notice symptoms of achiness and I was getting very tired, but at this point, my workload had picked up.
I had taken a promotion. I was working extra hard. It was extra demanding, and on top of that, it's the holiday season and we were going out. We had office parties. I had dinner parties. So I was tired.
I kind of chalked all of this up to either I just have a lingering virus, because I would get a little achy in the afternoon, then I would have a good sleep, and then I'd wake up and I'd feel fine.
The symptoms and the aches, like pre-flu kind of feeling, intensified as we got closer to December. I didn't realize how much I was taking on, in terms of the intensity of these symptoms.
I started to recognize that, "Okay, maybe I need a round of antibiotics. I need some blood work done. I don't know." I was thinking, "Maybe this could be thyroid or something like that, or it's hormonal. I don't know." Because I started to have night sweats, so the aches and the chills in the afternoon and the night sweats at night, only some nights.
How was your first doctor’s visit?
In December, I took myself into this doctor I found on the Blue Cross Blue Shield website, not a lot of thought, no recommendations. Sitting there, I was super stressed out that I really didn't have time to be there. I was in back-to-back meetings. She took blood, and the results came back, and she actually said, "You tested positive for Epstein-Barr, which is mono." I was thinking, "That's it. We nailed it. Okay."
A red flag did pop up at that moment with that mono diagnosis because I do recall that in high school, my boyfriend at the time had mono and I never got it, and I was told that I'd been immune to it. Of course we were kissing and that kind of thing, so I definitely would have gotten it. I thought, "What a weird time in my life to get mono, but, okay, maybe I really have been running myself off my feet."
The doctor, regular GP, said, "Okay, if it is mono, these pills, antibiotics, antiviral, they should work. In a week, if the symptoms don't go away, I need you to see a specialist to rule out things like lymphoma." That's what she said verbatim.
What prompted you to find a specialist?
Weeks go on, and I'm thinking, "Okay, I need to find a specialist." I called my GP and she sent me to one of her friends, who's an ear nose and throat doctor. That doctor examined me, and he said I was totally fine, there was nothing wrong that he could see.
That's the moment when I started to get nervous because this was now January. The holidays had passed. I was feeling these symptoms more and more intensely. The night sweats were now every night. For a specialist to totally exam my throat and my swollen glands at that point and to say that I was totally fine, I thought, "I could be circling through specialists' offices forever."
It was at that point that I took agency over my health, at that point, and I refused to leave that office until he gave me a prescription or sent me to someone else who could. I said, "I'm not leaving this room without help." He said, "Okay, my brother is actually better at specifically ear nose and throat, in terms of lymphatic system and viral. He's at NYU Langone. Let me text him and see if he can fit you in." Great.
I got fit in, and so I went to yet another specialist, and this time at NYU Langone. I explained my symptoms, which were very clear. I was achy. I was tired. I had maybe lost a little bit of weight, which for me is very strange, based on my lifestyle, and I was having night sweats. He sat there and listened to me, and he said, without hesitation, "Can I be honest with you?" I said, "Yeah." He said, "I think you have lymphoma. I think you have Hodgkin's lymphoma."
At that point, the words that I heard was "cancer," because here I am working in pharmaceutical healthcare advertising and I'm familiar with all these oncology terms, and I didn't know the difference between Hodgkin's, non-Hodgkin's, follicular, non-follicular. I heard "lymphoma cancer," and I associated it with my uncle actually who had non-Hodgkin's and died. That's what I heard. He died at 42, and here I was thinking, "I'm sitting in this chair at 29. I have 12 years left."
How was your experience with the healthcare system at that point?
This whole process was incredibly eye-opening for me. I cannot believe the system functions as it does, especially coming from again my professional background, I had spent many years of my life learning and mapping out a patient journey. It was very straightforward on paper, on a slide, in a presentation. Living it is a much different experience.
When I got the verbal diagnosis, and again the doctor at NYU Langone, the endocrinologist, he didn't exam me at all. That was his instinctual diagnosis. I'm a data person, so after I'd collected myself and reeled myself back in from dying at 42 like my uncle had, and I really wasn't quite sure what to associate with these words, I knew that we didn't have proof. I need a vial of something. I need a biopsy. Prove this to me, because this cannot be happening. You, doctor, can still be mistaken, because this could just be a thyroid problem and you've misdiagnosed me.
I was hanging on to that feeling.
Describe the biopsies/tests
So the process to get diagnosed for me took about 12 different tests. Now, that sounds intimidating, but I'll break them down for you.
The first is an in-office liquid biopsy. The doctor did a liquid biopsy, which is when they take the needle and poke it around in the lymph node. They're trying to extract a certain type of cell. It's called the Reed–Sternberg cell. That liquid biopsy came out negative, and I got that phone call the very next day because he had rushed the results through, very kindly. I remember waiting for my cancer call. I was leading basically the biggest meeting of my life. I had about 14 managing partners in the room and two agency presidents, and I was running the slides and taking them through the whole thing.
I just knew, because that's how my life is, that my phone would ring in that 20 minutes that I was up. It did, and again, this is how out of touch I was with my wellness priorities, I almost let it go to voicemail because I didn't want it to disrupt the room, the attention I was holding. At that point, something in me just refused to let that happen and I excused myself from the room, and walking from the front of the room to the back was the longest walk of my life.
I'm holding the vibrating phone. As soon as I get through the doors, I answer it, and the doctor then tells me that the biopsy was negative. At that moment, I became scared for the first time because I was more scared of being undiagnosed than having whatever lymphoma this was, because at this point, it's early February and I am really suffering with these symptoms. I can hardly get through the day at work. I have never felt as weak and tired. I was, at this point, 10 pounds lighter. I think I was turning a gray yellow by 2:00 in the afternoon, to the point where people on my team at the agency were asking if I was okay. I was holding up my pants with binder clips because they were so loose.
Luckily, this endocrinologist cut me off with my fearful train of thought and he said, "Yes, it's a negative, but I think it's a false negative, and I booked you in for surgery tomorrow at 2:30 in the afternoon. I need you to be there, because I still believe it's Hodgkin's. I'm going to go in, take out a lymph node, we're going to cut it in half."
Looking back now, after doing a ton of research after the fact and actually living through the experience, it's no surprise to me logistically that that liquid biopsy was negative, because there are about four Reed–Sternberg cells in your lymph node, and the likelihood of catching one of those with a needle poke is slim to none, so of course it would be negative. That's looking back now. That's wisdom for anybody out there.
That's why you say push for a surgical biopsy
The Reed–Sternberg cells in Hodgkin's lymphoma are very few. So in order to get diagnosed, if you have a doctor that is just going off the biopsy and you do get a negative result, I encourage anyone going through this process to really push for that actual biopsy. That surgical one where they take out a lymph node and they cut it in half.
Anyone with a lymphoma diagnosis, or what they think is a lymphoma diagnosis, definitely ask for, if your doctor doesn't insist on it already, definitely ask for that surgical biopsy. That is 100% foolproof with the Hodgkin lymphoma diagnosis.
Talk about getting the diagnosis
I arrived at the hospital the next day. I believed I had been overdiagnosed. Not to say that I wasn't scared or nervous, because again I hadn't had a lot of surgeries. This was a whole new thing for me. I was expecting this to be negative, in full transparency. I was technically diagnosed with Hodgkin's lymphoma being wheeled out of the surgery room, so drugged out on anesthesia.
I just remember the endocrinologist leaning over the wheeling bed as we're careening down the hall, and he said in excitement, "I found it. I knew I was right. You have Hodgkin's lymphoma." In a tone that didn't match the gravity of the situation. Again, I was so loopy that I was trying to match his tone with what he was saying, and I couldn't make the connection, so I was like, "Am I happy about this? Am I sad about this? Is this a good finding?”
How did you cope with the diagnosis?
In some regard, I was relieved that we found out what it was. In the other, I had no idea what this meant, but I knew that this was the worst thing that could possibly happen to me at this point in my life. I immediately went to a place where I thought, "My life is over. I am out of control on this. I cannot choose how I get to handle this. My life has gone completely off track. What am I going to do about my job? What am I going to do about my relationship?"
This is all in the fog of anesthesia, and it was absolutely terrifying. I'm in the recovery room, I'm going in and out of sleep, trying to wake up because anesthesia really hits me hard. I woke up one time and a nurse was petting my hair and saying that she knew I had gotten rough news, and then I fell asleep again. Then I woke up and Matt, my then boyfriend now husband, was sitting at the end of the bed. His hand was on my ankle, and then I disappeared again into the fog.
The next morning, that's when the goose chase happened with trying to get into a hospital and trying to find an oncologist because I had gotten myself to a diagnosis. I was feeling so terrible and so ill, I assumed that I would be swept up into treatment and we'd fix it and I wouldn't have anything more to worry about. We would make everything good again, and I would be fine.
My endocrinologist who had done the biopsy, I turned to him and I said, "Okay, what's next? We have the diagnosis, what's the treatment protocol? How do we fix this? Because I need to be fine. Give me pills. I know there's chemo pills now. We're just going to one-two punch this." I knew that side effects had become so manageable with all of these new scientific advancements, I thought, "Okay, well, this might just be a blip on the radar. I might not even lose my hair."
And he said, "Well, I encourage you to find an oncologist, but really the buck stops here with me. It's my job to diagnose you and then most people go find their care team and their doctor of choice. And usually you get a first opinion, second opinion, sometimes third opinion."
How did you choose hospitals?
It was literally three days of my mother, Matt, and me on the phone calling MSK, Weill Cornell, any cancer center who would take me. And here I am in New York City, surrounded by the best centers and care in the world. I was given a three-month waiting time.
I actually had to say to the administrator on the phone that, "I just got diagnosed yesterday and based on what I'm reading, I'm not sure that I will make that appointment in July."
I actually had to say those words, which was incredibly terrifying for me to actually articulate that and come to that realization. But it was the craziest experience trying to get into treatment, and I'm not even saying we're pulling ropes with like friends of friends who went to this doctor for their cancer.
I mean, we're calling all of our cancer friends to see whose doctor we could go to. And these again weren't just strings, we were pulling maritime ropes to get into care.
My personal gut instinct was to find the best person I could possibly get my hands on. And that was at one of the largest cancer centers in the country. I felt most comfortable there because I knew that they saw, and saved, many of us. It was a comfort for me knowing that I was not one of a handful of people getting treated. That I was one of 300. That their just having a larger patient body to work with made me feel that they had experience with many different outcomes, side effects, risks associated, and I really felt confident in this team. I knew that if I had a weird reaction, which I of course did, there was somebody always manning the phone, and I could go in to a specialist with a simple email. And because I was in the Weill-Cornell network, I was very much connected to all departments, and with priority order.
So that's how I preferred to do the whole regimen. For somebody who doesn't have access to that kind of cancer care, I would really go off of referrals and I would personally want to know that that doctor has treated somebody that I know and everything’s been fine. I would want to see some serious credentials. But, of course with a smaller practice that's treating you, know that with Hodgkin at least, its a very straightforward protocol. And again, you don't need as many bells and whistles as you would with maybe a breast cancer diagnosis.
Why did you switch hospitals?
I actually got diagnosed at NYU Langone and then I switched to Dr. John Leonard at Weill-Cornell. Luckily, thank God by five connections removed, I got to see Dr. John Leonard, who is head of the lymphoma program at Weill Cornell. He is world renowned and I cannot believe my luck that I got into, to be treated with him and his team. They have a full blown lymphoma program where they specialize in Hodgkin's and other lymphomas, all different stages. And they have incredible, incredible survival rates and remission rates. So, again, very lucky to be with them.
My doctor specifically is very much into clinical trials and research at a global scale. So actually, when I was going through treatment, he had just learned of a study that realized that if you pull bleomycin, which is the B in “ABVD.” If you pull it halfway through your infusion schedule, it really has no effect on the remission rate. And that drug specifically is the hardest on your lungs. So he was able to save my breathing and my lung capacity from further damage by pulling it out and then not risking my remission rate. So that's a credit to his dedication to research.
II. Treatment + Side Effects
Describe the scans before treatment
In order to start treatment, you need to run a series of tests. This is where the bulk of the testing lies. But, don't worry. The doctor that you're seeing will likely schedule them back to back. It's just a little cardiac tests, lung tests, and a series of scans. And for me, I was done in about a day or two with these tests. My doctor happened to schedule them back to back, and I just spent one or two days at the hospital just going from department to department which was the best. So if you do that, definitely arrange for that kind of schedule.
The PET CT scan, out of all the prepare testing, the PET CT scan was the most intense and the most nerve-wracking. You are given this radioactive liquid, this sounds crazy, but it kind of lights you up like a Christmas tree in the scanner and allows the doctor to see your full lymphatic system and any enlarged lymph nodes. And basically that's when you'll get staged. Any lymph nodes that are enlarged from your chest up, you're stage one to two. If the lymph nodes are enlarged in your whole body, that's stage three to four.
And I actually got to skip the bone marrow biopsy, which is typical in a lymphoma testing in order to stage you. My doctor was quite sure that I was stage four already so I got to skip that. So I'm not as familiar with that one, but I do know that that's kind of the final step before you can start treatment. But the preparatory tests are to ensure that your body is healthy and strong enough to withstand the treatment. That is how my care team explained it to me, which was a little intimidating because I started to realize just how intense the regimen would be.
What was your treatment regimen?
For my type of Hodgkin Lymphoma, I was stage four, and I was originally diagnosed with eight rounds. I ended up doing 12 rounds, because at my mid-cycle scan, I don't think my care team saw the results that they wanted to see, which was nerve-wracking.
So thinking about it that way helped, and I was really taking care of my body throughout the rounds of chemo.
Describe the infusion process
I went in every two weeks. I went in every other Tuesday for my infusion, which took maybe about four hours for the actual infusion and then two hours of prep, and one hour of post-infusion monitoring.
So all in all, it was about a seven-hour day, depending on how busy the infusion center was. Again, I was at a very large hospital with a large infusion center. The wait times were quite something, but you packed a lunch and you brought books. So that's how each round went. For me and my infusion center, I usually had the same rotation of about three nurses so I developed relationships with all of them, and it was an opportunity, really, to bring somebody with me. My mother came a lot. Matt came a lot. I had close friends who came for one or two or three drips.
That first drip was the craziest experience for me, because it was a moment where I realized the gravity of the situation and I realized what exactly was ahead of me. I had never had an infusion before, even a vitamin infusion.
It really freaked me out, that first infusion. My mother was with me. I had done it intravenously before I had gotten my port put in. And I could feel the serum in my veins, which I did not like. I'm hypersensitive to that stuff, so not everybody had that same feeling. But for me, the nurse, who was very senior and kind of ran the department, who I happened to have that first infusion, she strongly advised that I get the port put in before the next infusion because chemo in general, intravenously, it destroys the lining of your veins, which you want to preserve as much as possible. And the port kind of eases that a little bit.
What were the side effects from chemo?
I felt physically woozy and loopy after the infusion on that afternoon. I would come back to my apartment usually accompanied by whoever came with me that day, and I would just kind of crawl into bed. It was like the worst hangover for three days after that infusion, basically, every other week. That's the best way I can describe it. It's lightheadedness.
Even brushing your teeth would make you feel drained. I remember I would have to rest on the sink to catch my breath, even just after putting pants on. It was three days for me of rest, and a little bit of nausea. I actually only threw up once, weirdly, before dinner one time, and then it was gone.
Other people have had different experiences, but my care team definitely prescribed me all the anti-nausea medicine, and antacids, and all this. I think I had like 12 prescription bottles on my bedside table at one point. There are fixes for the worst side effects, which are nausea and sleeplessness.
Again, I had never experienced anything of this magnitude. I had, obviously, never done chemo before. I knew what it looks like and that was scary enough. However, the turning point where I knew that I really needed to help myself through this was after my second infusion, I noticed my hair was starting to thin on my pillow when I woke up. Hair was on my spot on the sofa. It was on the back of my coat. I was okay with that. I was expecting that.
I was struggling to finish sentences and it was almost like I had the word on the tip of my tongue but I couldn't get it out. It was, for somebody who loves writing and I'm very verbally expressive, and at the time especially when I needed to communicate how I felt, having the tools needed to do that taken away was unfathomable for me.
What helped with the side effects?
It was incredibly impactful for me to help me get a higher quality of sleep, to fall asleep, to feel less anxious, to just kind of take it down a notch from an eight to a three. Again, it wasn't perfect, but it really helped in support of everything else I was doing on the medical side.
What really helped me with settle my stomach and things like that, was cranberry juice and soda. I would have it in a wine glass, which made me feel luxurious. It was one of the many little ways to treat yourself into thinking that you're having more of a spa day than an infusion, but the next day I would sleep a lot
For hurrying up the nausea and restlessness in those three days, for helping to detox out the chemo and kind of keep it moving through your body, an Epsom salt bath every day for 30 minutes, I mean, not just like a little bit of Epsom salt. I put like four cups in, and that's a homeopathic remedy. It's called a Shaman's bath if you do four cups of Epsom salts and a box of baking soda, and it's super power detoxing, which was incredibly helpful.
I ran this experiment: if I did that, the nausea, and the fogginess, and the toxic weight feeling after that infusion, after every infusion, it went away 24 hours sooner. If you're able to help yourself detox out the chemo and get it moving through your body, it's the best thing you can do.
Again, in that effort to kind of speed up the hangover and get it over with, in three to four days was tons of water. I drank so much water. I was craving water. The thing that made the most difference, actually, after the infusion when I was feeling really nauseous, that afternoon I would drink a liter of water, and I didn't feel like it, but honest to god, if I didn't drink it, I felt so terrible the next day. Again, it's just another way to get the chemo moving through you and out, get it to do its job, and then be gone. The worst thing you can do is to let it stagnate in there. Those three things made the world of difference.
You turned to holistic approaches to help the side effects
That's really when I turned to really kind of a theory and it's the idea that I just opened myself up to anything that would help me. I started with a nutritionist and a naturopath to help me eat right and to help give myself supplements that I needed to get through treatment.
That, of course, sent me down a rabbit hole of running around New York City, experiencing all of these wonderful healing things.
Describe your hair loss
The hair started to go around the third infusion and it really thinned from the third to the fifth, more and more intensely.
I remember making sure to always kind of wipe off my yoga mat if I was in downward dog and my hair started falling out in my hands, which did happen. It came to a point where the hair had just started to keep coming and coming, and I was following myself literally around the apartment scooping up handfuls of hair from the sofa, from the sink, from the bathroom, on the towel so Matt didn't see it because I knew that it was traumatic for him as well.
It was maybe after the fourth treatment that I decided that I was going to cut it, and I originally because I'm a little bit of an extremist, I thought I was going to just buzz it right off the back. But actually I went out to brunch with my friends that morning and my hair was in a tight bun, so it could all stay on my head. We had about a bottle of champagne between the five of us and we went to the hair salon and I said, "Okay this is going to be a celebration because the medicine is working and that means that the hair is going."
So I said to the stylist, I said "Just let's buzz it. This is the situation. I'm ready for it," and she was very, very gentle, very kind. She actually advised that "Let's go short first and then do this in two phase because I don't want you to be shocked with the transformation."
How did you deal with the hair loss emotionally?
And it was a transformation on many levels. It changed how I saw myself in the mirror, it changed how other people saw me, and I originally felt that being bald because I had cancer and having this kind of duck fuzz on my head, I thought that it made me seem broken and less than, and sick and weak.
That change in perception, that change in how I look because looking back at those pictures I looked really strong, I looked really good, and I am so proud of that. So please [see] that as a sign of hope, if you're going through this, because it's something to embrace. It will pass, it does grow back, and it was an illuminating experience on a personal level, on that I got a lot of growth out of it.
III. Quality of Life
You say get help as soon as possible
It was the beginning of a very grueling treatment schedule. But at a time when I thought everything would be easy and once you got the diagnosis you can float right through into treatment, it was a very different experience. So I encourage anybody who's going through this, to stick with it and to corral those close to you and put them to work, put them on the phone. You're gonna be tired and just know that it's almost over. Once you get into treatment it smooths out but you have to stay focused to get yourself there.
How did you address the issue of fertility?
So because I was so late in my stage, I really had to skip many important parts. One was the port. The second was fertility. And freezing eggs. And for women, especially around the age of 30, that's something that you would think of doing, and I was very lucky to meet with a fertility specialist before I started treatment.
However, I was advised that the fertility process to harvest those eggs would take six weeks, and that really wasn't recommended in my situation. And I was really suffering, as well. Luckily, I have a sister who's incredibly smart and beautiful, so we have some good, solid, maybe even better genes in her, so that did make me feel better.
ABVD, specifically, is not associated with any fertility risk. And my oncologist, Dr. Leonard, very esteemed in the whole lymphoma game, had said if I had any problems getting pregnant or any fertility problems, he said it had nothing to do with the drug. He had never seen any problems after the therapy. So that should bring some relief.
What was the worst part of treatment?
Yes, I was relieved that the cancer was gone. And there was about a week in there of true elation. The anxiety started to kick in. I knew that I had to pick myself up and put myself back in my life. And for whatever reason, I was scared of the ways that cancer had changed me. I didn't have control over what it had done to my life, to my brain, to my physical body, and my emotional state.
Weird problems. Like I couldn't fall asleep anymore. That's a learned skill. We learn as babies. For whatever reason, I really had trouble falling asleep. It was when I was up for, I think about a week, really struggling to sleep, swirling thoughts, gripping anxiety, that I realized that I needed to make a change in my life and that I couldn't be afraid like this anymore. I knew I was gonna go back to work, but I knew that I had to be open to how this whole experience changed me.
I knew that I wasn't giving myself enough time to process it. And that is mandatory with the trauma of this magnitude. I realized I was unable to push through it, and pretend like nothing happened, which was my safe zone.
What’s your advice to others?
IV. CC's Story: Full Video