I even said to my husband when I started to feel it, I said, "I think I have lymphoma." I specifically said lymphoma. opened up my own chest X-ray and I saw that not only were there masses near my collarbone, but there were masses in my chest, And so I just looked at it and it was like it was somebody else's chest X-ray. I was totally numb. I couldn't even process that I am a mom of three kids. They're adorable. They're ages four, nine, and ten, almost 11. My husband is amazing. We've been together since before we went to medical school. We've been buddies since the beginning, since before med school even. I've been a long-distance runner for many years. I love jogging and running and baking and hiking, playing guitar, painting. I love being a doctor in my community, too, when I'm feeling better. It was so tough in the beginning because it was one year into the pandemic and I was tired, really tired, having trouble getting past 8 o’clock at night with kid bedtime and bath time and then getting back to patient notes after the kids were sleeping. I just thought, every doctor is tired right now, especially doctor parents It was such a hard time, so many hats to wear and so I just discounted my fatigue. That went on for maybe a month or so, maybe two months. And I also had a cough. The cough was predominantly at nighttime. There had been some wildfires in the area in California where I live. And so I had a ton of excuses for that and why I was coughing. I'd be coughing so hard that I slather myself in Vicks VapoRub and I take steamy baths in the middle of the night to try and calm my breathing down, thinking, "Oh, I must have some kind of asthma or reactive airway," just all these justifications why I wasn't feeling well and have these symptoms. Then I started getting a rock-hard, rapidly growing lump right above my collarbone. And then I knew. I even said to my husband when I started to feel it, I said, "I think I have lymphoma." I specifically said lymphoma. I don't know. Shortly after, I put it all together — okay, cough, fatigue, and now I have this lump and this doesn't feel like a benign lymph node. This feels like I have a rock that's coming up above my collarbone now into my neck area. And within a week, there was a difference in the size of it. A lot of people don't have rock-hard lumps and they have more rubbery lumps but I just knew I had to get it checked out. It was really scary. First, just logistically finding the time to get an appointment, doing the dance of, "Am I imagining all of these things? Is this really something worth taking time off work for?" I I was able to get a thyroid ultrasound. When I was in the ultrasound suite, the ultrasound tech said, "Your thyroid's normal," and so I could sense a "but" there. I said, "So what's going on? Can you just give it to me straight?" And she said, "I'm a tech. I really can't diagnose you with anything but see these?" And she turned the ultrasound probe and I looked at the screen and went, "Ugh." It just looked like something bad, like some kind of tumor or mass. Then I said, "That looks like tumors or masses." And she said, "Yeah, it does. I mean, but I'm not a doctor." She was very professional, given the situation. It's so tough. I called one of my friends at work — another doctor — crying on the way home, saying that it looks like tumors. She ordered a chest X-ray for me and I got the chest X-ray on Friday morning before my day of clinic. I got it and then went straight to my office and opened up I got it and then went straight to my office and opened up my own chest X-ray and I saw that not only were there masses near my collarbone, but there were masses in my chest, my mediastinum — this area in your chest, the middle chest, my mediastinum — this area in your chest, the middle of your chest cavity. It didn't look right and it looked like there were masses there. And so I just looked at it and it was like it was somebody else's chest X-ray. I was totally numb. I couldn't even process that that was I was totally numb. I couldn't even process that that was mine and I just walked into my friend's office — she's an amazing nurse practitioner and she works in the office next door — and I said, "I think I have cancer. I just opened my chest X-ray and there's masses and I have lumps in my neck. I'm pretty sure I have cancer." I just said it with this blank look on my face and then I said, "Okay, I'll go see some patients now," and I just went on about my day and just in shock. I was completely in shock and happy to focus on everybody else and not myself because that was just terrifying. Oh, gosh. This is where my angst, I think, as a patient started. My very first experience after having that ultrasound and chest X-ray was I had some CT scans done that confirmed everything was going on in my chest. The next step is, of course, you need tissue. You need a biopsy. I was initially referred to head and neck surgery for a video visit. The visit was really to just look at the scan and see if this is something that the surgeon felt they were going to be able to biopsy or not. Was it reachable based on location? I got on the video visit with my husband and the doctor said, "Hey, Sam, I saw your CT. I don't think I'm going to be able to safely biopsy that because it's too close to your carotid artery so I'm going to refer you to interventional radiology." I thought, "Okay, that makes sense." I wasn't hysterical. Great. Fine. And then the next thing that they said, without knowing a little bit more of a history and my social history, which was that I had a three-year-old daughter that I had just finished nursing within the month or two before and so I still had milk in both breasts and I guess it lit up on my CT scan. When I looked at my CT scans over the weekend before the appointment, I wasn't even concerned about what lit up in my breast because I was like, "Oh, there's my milk," such a trip. The doctor said, "I see something lighting up in your chest and so I'm pretty sure you have metastatic breast or lung cancer." The doctor told me this and there was no pathology yet. I knew that was wrong. I knew that was incorrect and you need tissue and it was probably my breast milk. But I think that "What if?" part of my brain just said, "A doctor's telling me that I probably have metastatic breast or lung cancer." I started hearing this high-pitched "eeeee" and just the light is drowning out everything. My husband sounds like he's undershwater and he's right next to me and I said, "What? What?" Just like that. Just completely losing it and then I just started bawling. I don't even remember finishing the video visit. I think my husband finished it for me because I went nuts. I just was like, "Oh my god. He's just giving me a death sentence." That's how I felt. I haven't even been biopsied yet. Yeah. I was referred to interventional radiology and that doctor was amazing. My new PCP, my whole team, all my colleagues, people were helping to just expedite things. I was able to be biopsied pretty quickly. They fit me in within a couple of days. I think I had the pathology by either that Friday or the following week and it was Hodgkin lymphoma. At that point, there was so much whiplash and it was such a drastic swing from earlier in the week where it was a very different situation potentially. I was like, "Okay, Hodgkin's lymphoma, that's one of the curable ones." I was so grateful that this was Hodgkin's lymphoma. That weekend, I think I just spent on a high pretty much up until my biopsy. I was skipping around, "Okay, I'm going to live. It's just going to be a touch of chemo." But it didn't turn out that way. I think there was some question about my staging because I had lung tissue involvement. There was some concern about am I really 2AE or am I stage 4 because the extra involvement of organs outside the lymph nodes can potentially be stage 4. When your lungs are involved, it's somewhat controversial. If it's continuous with the lymph nodes in that area, then you're still 2. What I understood at the time was that it would impact the length of chemotherapy because if you're earlier stage, you might get two to six months depending on any number of things. But if you're a stage 4, you're almost certainly getting six months of ABVD. They use the Ann Arbor classification and that's the most classic one. It has to do with is there one group of lymph nodes above the diaphragm or two above the diaphragm? And then once you've crossed the diaphragm to the other side, where your belly is, that tends to be stages 3 and 4. But there's other exceptions to those rules and different ways that you can come up with different stages and risk factors. I think this is where I started becoming or at least feel like I was becoming labeled as the anxious patient because I had questions — the lung involvement and what did that mean. It started to feel like, "We're going to discuss it at tumor board and we'll tell you what you are and what the recommendations are," and really in a nice way. More like just let us take care of you and you focus on getting better. And I don't know. For me, it didn't feel that way. I was like, "Well, I want to be part of the conversation. I want to really understand what's happening to my body, what the rationale is. Why not stage 4 or why stage 2? How did you decide that?" I think physicians aren't always used to getting those kinds of questions and I wasn't asking anybody to defend the decision. I just felt like I really wanted to understand. When I started having those questions about would it be two months of radiation? Would it be four months of radiation? Would it be involved-field radiation or some of the terms that I had started reading about and looking up. I had to look them up, too, even though I'm a doctor. Would it be six months? When I started asking those kinds of questions and why this and not the other, that's when I started to feel that things were taking on a certain vibe. And I think the answer that I got was, "Just start the chemo and then we'll see what the two-month PET shows," because that's sort of how it tends to go with Hodgkin's is that you'll get a PET scan after two months and see where you're at. Then depending on that response, I think it's called PET-directed therapy, that determined the rest of your outcome. Do you need more chemo? Do you need less chemo? And my second month PET scan was really good. I think the concern was let's give you just two more months of chemo, four total. I was concerned from the get-go that really I was a stage 4 or that it was more complicated or that somehow four months of chemo wasn't going to cover me. I just had that fear from the beginning. I don't know why. ABVD is tough. It's a tough regimen. I pushed for the six months just because I felt like I really want to just slam this thing, you know? I wanted just one and done if there's any chance of relapse. By that point, even by four months, I started to feel like that Mack Truck feeling is what I call it. Really tired and I'd lay in bed for about three days after every ABVD. My mom called it the lagoon. "Oh, is she in the lagoon?" Because I would just lay there with the light off. The fact that I was advocating for more, I really didn't want to do it but I thought if this does anything to positively impact my survival, then I wanted the more aggressive treatment. For me, it was hard to figure out the toughness of things. Was it just the chemo? Was it the meds they were giving me to help with the side effects of chemo? And so that was hard to sort out at various times. Nausea was a big issue for me, so I was on a lot of different anti-nausea medications — Zofran, Ativan, Phenergan. I was getting steroids. And I think I also had, one or two times, Zyprexa, which is an antipsychotic medication that's used in the psychiatric community. And for me, that medication was horrible. I was a zombie for days and I couldn't think at all, worse than the typical chemo brain. I really can't put any sentences together. I think the thought was that I had so much chest involvement that like I'd have to just get radiation all over my chest and so there was so much that they would hit inadvertently — my chest wall and the breast tissue and the surrounding lung tissue. Because I was only 38 and they're planning for me to be alive a long time, managing toxicities or second cancers, and the potential for that with your treatment is something that your doctors are always thinking about. Some of the pushback is because they're thinking Hodgkin's can be really curable even when it comes back. In Hodgkin's survivors, we really want to manage the long-term toxicity so that's not the thing that's making you the most sick. Also, heart disease. Coronary artery disease can happen more if the heart field is involved in the radiation. All these things to think about. Yeah, there wasn't radiation. And I think that was the other thing about why they were okay with six months ultimately was because they said, "If you did have radiation, it would have been four months plus radiation. Because you're not having radiation because we don't think that we should do that whole area, six months of chemo seems reasonable. Crazy, also reasonable." In the first two months, it's like it melted and my cough went away. At about two months in, I started getting a cough and I was on ABVD and so there was some concern, especially since I'm a runner and I want to be able to run in the future, that I was having some Bleomycin toxicity. And that's one of the more well-knowns. At the time, we just thought we don't even want to chance it. There's actually a new trial that had just come out called RATHL and that trial showed that therapy can be deintensified if the two-month PET scan looks good, meaning you can go down from ABVD and drop the Bleo anyway, even if the person's not having cough or side effects. For me, it was like, "Hey, this trial just came out." When I brought it up, she was like, yeah, it seemed reasonable and she worked with me on that and I was really appreciative because Bleo toxicity... Running is my life. It's my coping skill. They knew about that upfront that that was a very important aspect of my life and that we wanted to preserve that. That's what I did from months two to six and then I had my end-of-treatment PET scan and it looked great. I was in complete remission. We celebrated that first night. I have this whole photoshoot and videos. The kids sang me "Happy No More Chemo to Mommy" instead of "Happy Birthday." I remember the visit. It was either video or in person, but my doctor said, "You're in complete remission and you need to go on a vacation." I wasn't feeling well. I felt really beat up. I didn't feel right. I thought something wasn't right. I just didn't trust that things were okay because I didn't feel okay. Also, my health really declined over those six months. I gained a lot of weight from the steroids and the more weight that I gained, the harder it was to manage further gain. It just spiraled out of control. When I was finally declared no evidence of disease, that's when I just took a nosedive into severe depression. That came for me after the physical recovery started. My counts were starting to come back from my last chemo, no evidence of disease on the PET, felt like I was starting to potentially get out of the danger zone, and then I just fell apart. "This was so scary." I couldn't concentrate and I didn't know if it was just the accumulation of all the chemo. Chemo brain is such a broad term that people use, but for me, it was always really a combination of severe sadness and difficulty functioning in everyday life, difficulty remembering things, difficulty doing what I would say, or executive functioning tasks. A combination of that and remembering who I was just six months before. I was a highly functioning person. I felt like it was such a far fall for me. Even though now I know I've done a lot of frameshifting in a more positive way, but I just was really comparing myself to where I had been and I was so scared that I would never come back to what I was, even though I did. For me, cancer was just terrifying since the beginning, you know? Part of what I've been dealing with lately, even now, just trying to communicate with my medical team, is that sometimes I feel the irritation from questions that I'm asking. But my perspective was I got a second chance. This is my life. I need to stop being afraid to ask for what I need. It's my one life, you know?
