You know how people say when you are sick, the last thing you should do is search your symptoms? Web MD is going to make it sound much worse than it actually is… Well, here is some irony for you. When I found the lump in my neck, of course I googled it. I found this crazy type of cancer called Hodgkin’s Lymphoma. I read all the symptoms for it and I had them all! But my husband convinced me that I was just projecting – like how when someone talks about your eyes watering, they actually start to water? Or when someone mentions chest pains, you automatically have chest pains? So I didn’t pursue it. I ignored my swollen lymph node, sure that I was overreacting and didn’t need to worry about it. I probably just had an infection, and besides, I didn’t fit into the group that makes you “more likely” to have it. The only thing I had in common with those people was my age!
Luckily for me, I had a persistent doctor who referred me to a ENT specialist. He took my symptoms seriously and now, the symptoms that I had had for several years, things I had just accepted as a part of my life, are all gone. And because I think there are people out there who would also be tempted to ignore these things, I just want to share a bit about how my symptoms appeared and how they felt.
In retrospect, my most obvious symptom was severe itching. It’s a very common symptom for Hodgkin’s Lymphoma. And when I say severe, I am not exaggerating. It started in my legs and I was pretty sure it was the weather. I started buying a special exfoliator to use on my legs and shaving more and more frequently. It didn’t help.
I was convinced it was a dermatology issue, but I didn’t really have ready access to a dermatologist in Japan. So I self-prescribed treatment – I changed soaps, I changed laundry soap – to no avail. I googled it and read that it might be caused by soda, which I no longer drank, or by silver amalgam fillings. So I didn’t worry about it. All the while, it was getting worse and worse. My husband told me I would scratch in my sleep to the point it kept him awake and I literally would scratch my legs every time I sat down. I was at the point that I didn’t even notice anymore; it was just my life.
The pinnacle of my itching came when we moved to Arizona. This was about three weeks before my youngest son was born, about six weeks before discovering the lump. We bought a new bed and new sheets and when I went to bed that night, my whole body itched, I couldn’t sleep. I jumped out of bed and tore the sheets off, washed them in the hottest possible water on allergy mode, dried them and while I was waiting for them, I took the hottest shower possible, shaved and did the “treatment” I typically did on my legs – shaving, exfoliation, nothing extreme. No relief. When I laid down again about two hours later, I was still just as miserable as I had been.
About two months into my chemo, my itching went away completely. My husband was the one who noticed. I quit scratching in my sleep and don’t even worry about my exfoliation that I couldn’t live without before. It’s pretty crazy how much that was affecting my life and I didn’t even realize it any more.
This was my least obvious symptom. When I first started experiencing fatigue (about the same time my itching appeared!), I was pregnant with my middle child. Shortly after he was born, before he was even sleeping through the night, I got pregnant again and miscarried. A few months later, I got pregnant again with my youngest son. So over the course of the four years, I was pregnant, nursing a newborn, getting very little sleep, and then doing it all over again. I just thought it was normal to be that tired. So for about four years, I went to bed around 8/8:30 every night unless I had somewhere to be. And regardless of how much sleep I got, I woke up tired still. I honestly thought that was normal but it is not. About two months into chemo, my fatigue went away. Completely. And I still had a newborn to get up with every night and take care of AND I was going through chemotherapy. And I was less tired than I had been in over four years.
This was one of the last symptoms that appeared for me and I attributed it to being pregnant. But after my son was born, I was still having night sweats. It literally was like I was in menopause but I was only 28. I would wake up at night completely drenched in sweat. I started wearing fewer clothes, not sleeping under covers, turning the AC down, turning on the fan but it didn’t matter how cold it was, I was waking up completely drenched. This is actually considered one of the more aggressive symptoms, which makes sense since it showed up about six weeks before I noticed the lump and about the same time that the itching because completely unbearable.
Swollen Lymph Nodes
This is the most obvious symptom and the one I eventually went in for. Both of the lymph nodes in my neck were swollen, one felt about as big as a nickel (what I could feel) and the other about the size of a pea. They were hard, almost like rubber, not soft at all. I honestly just thought I had an infection, probably strep throat because my throat also hurt and that’s why I scheduled a doctor’s appointment.
When I had my surgery to remove the largest node and have it biopsied, it was about the size of a golf ball, much bigger than it had felt on the surface. The PET scan also discovered four other large spots as well as many small spots forming that I couldn’t feel. Common places that you will notice swollen lymph nodes are in your neck or under your armpits and if you feel any, I strongly recommend that you get them checked out, especially if you are experiencing any additional symptoms.
Other symptoms I didn’t have
- Fever and chills that come and go
- Loss of appetite
- Weight loss that cannot be explained
Due to the nature of the symptoms with Hodgkin’s Lymphoma, people rarely go to the doctor before they discover a lump. Most of the symptoms are not ones that you would expect to accompany cancer. And as a side note, all of my initial blood work came back perfectly normal. If my doctor hadn’t been persistent, I wouldn’t have worried about it and just gone on living in denial because I had normal blood work. Take it seriously. The sooner it is diagnosed, the better the prognosis.