My mom was becoming an expert on Hodgkin's Lymphoma at this point. Day and night, she was online looking for websites, YouTube videos, or blogs about HL. She would share some of the things she learned with me, but I didn't really want to think about what might happen. Every once and awhile, I would get curious and explore online. It was just depressing to read some of the stories out there and no one really talks about the things you experience during this ordeal. What really happens and when does it happen? I would ask the nurses, when should I expect to feel like crap? They would give me an answer like "it's different for everyone." It was summer and I wanted to plan on doing things when I felt good. Not knowing if I will feel okay until I wake up every morning, doesn't allow for planning. So hopefully this can be a guide for those who want to know what is going to happen and when is it going to happen. The nurses are right... everyone is different, someone else could have a contrasting story.
My chemotherapy treatments are on Tuesdays every other week. For two days after chemo, I would wake with a migraine. These migraines were disabling. Hydrocodone and sleep were my only hope. On the first day after chemo, I realized that I was getting full faster. It wouldn't hit me until I was done eating and then I would have the worst stomach ache. It was like that feeling you get after you eat way too much on Thanksgiving... except I only had to eat a normal amount to feel that way. Three days after chemo, Friday, I noticed a few more symptoms. First, my fingertips were tingling. My mom told me about this symptom. It is called neuropathy, which is when your nerve endings are being damaged (Don't worry...my tingling would come and go and now it's gone). When I ate breakfast that Friday, I also noticed the beginning of sores in my mouth. No, my dad was still not right about the herpes....and I didn't get misdiagnosed with cancer! Having sores in your mouth is a side effect of chemo.
On this Friday, I would also have the first of many annoying hydrations. For this, I go to the hospital, they access my port and draw blood. Then I go to an infusion room where they hang a bag of fluids. This is to make sure I am hydrated and healthy. In the beginning, I was going for hydration twice a week. After a few weeks, my oncologist changed it to once a week. They do blood work to check all of my levels. It also tells us what my absolute neutrophil number is (the number that tells us if I am neutropenic). During this time I am very susceptible to becoming sick. I must be careful with what I eat, as well as being in crowded closed in areas with lots of people. You just never know who may be sick or carrying something.
Olive has kept me company and kept me busy for sure! She was 11 weeks old the week after my first chemo. I love her so so much, she is my baby. She got a new purple harness and I took her on her first walk.
A week after my first chemo is the first time, I got sick. I woke up around 4am throwing up. It lasted into the following day and a migraine also came on. This was a struggle, since I had Olive to chase after. I was a till on the prednisone and it is starting to make me shaky. I also noticed that I was starting to breakout from the prednisone. This was weird for me because I never really had major pimple breakouts. A week and a half after my first chemo is when my counts dropped for the first time. They would drop every time on the Friday a week and a half after treatment. I had an oncologist app that Friday. She broke the news that I should not be drinking during treatment. I’m 21 and it was summertime so to say I was unhappy hearing this news would be an understatement!
Chemo #2 was July 2. It was a day from hell! I had to be there at 7:30am. They ended up making me wait an hour before they called me back for my bloodwork. When I went into the infusion room, the nurse couldn't start the chemo process yet because my bloodwork wasn't back yet. My counts came back and they were low. Now for other types of cancer, they would not give chemo if counts were low. For Hodgkin's, it’s very important to stay on track receiving the chemo every 14 days so they proceeded to give the chemo.
I was just about done with my pre meds when my oncologist called. I had a slight cough and she acted confused on why I would have a cough. I know I'm no expert but I'm pretty sure it's a normal thing to get a cough. So the oncologist told the nurses to send me down for a chest X-ray. When they told me this, I was not happy. I had to stop treatment to go for an x-ray that I knew was going to come back clean. It also added about an hour and a half to my stay. The cough was just like every cough I have had before. She called to confirm that I could resume treatment and gave us some good news as well. The tumor was responding to the treatment! This was exciting but the battle wasn't over yet. My day at the hospital ended up being around 7 1/2 hours. Indigestion was also becoming a big thing now. I have never had indigestion before this, and it is not fun. It felt like my chest was on fire. Yay! Let’s just add another pill to the list. Welcome to the club Prilosec!
My friends from home and college have been amazing through this entire process. A bunch of them from school came to visit me. Ali came one weekend and then Chloe, Erin, and Ali came the following weekend. I had so much fun and was so happy to see them.
What's Next: Hair loss, when it happened and how it happened. Thank you for your continued support.