After chemo treatment I started feeling sick to my stomach. It was hard to find anything I wanted to eat. I didn’t have the taste bud issues that many people experience, initially, but nothing sounded good. I felt drained and tired. I was blessed to have a lot of support from my family so I was able to just lay on the couch. Addy and I would snuggle up and watch movies, or read books, or binge watch kids series. We both loved the show Jesse and Liv and Maddie, I can still sing the theme songs word for word.

My hair started shedding pretty badly within the first week. It didn’t fall out in clumps, but I would wake up in the morning and find strands all over my pillow. It was itchy and I felt like it was obviously going to get to the point where it was going to be gone. So I decided to cut it really short, like a boys haircut. That lasted about a week because the shorter it gets the more itchy it gets when it falls out. So I decided just to shave it off. My mom came in with clippers and we just went for it. Addy came in while we were shaving my head and burst into tears, that was the hardest part, I honestly couldn’t have cared less about my hair at that point. Thankfully I was blessed with a decent shaped head and I was super skinny due to the cancer, so I kind of looked like a sick Sinead O’Connor. It felt so much better to just have a bare head! Although, I was not confident enough to just walk around like that, I still wanted to look normal in public.

I ordered a lot of wigs, but I didn’t spend a ton of money on them. I looked at real hair wigs but they were really expensive, like upwards of five hundred dollars. If I was going to be bald forever I probably would’ve considered it, but being bald from chemo is temporary for most people. I recommend looking at places locally like hair shops and if you’re an Amazon Prime member they’re a good place to get wigs at reasonable prices as well. I also ordered a lot of head scarves, although you can use any kind of scarf on your head, the scarves designed for chemo patients really work well. They wrap around your head and have little ties in the back and you don’t get weird little wings on the sides like you might with just a basic scarf. I liked the chemo hats with sparkles and pretty designs, it makes not having hair fun and helps you still feel pretty, which to me is important because it helps you feel better.

I recommend lots of cotton knits, soft stretchy material for hats, scarves and clothing. I was tired a lot and being in comfortable soft clothing means you can nap anytime and be comfy. I lived in stretch pants and tank tops and hoodies. I was down to about 120lbs, which wasn’t super skinny for my height, I’m only 5′ 3 but I didn’t look healthy, I looked sick, and I was losing about 2lbs a week.

That brings me to food. I wanted to eat, but nothing sounded good most of the time. There were a couple things that almost always sounded good, pot stickers and egg flower soup. I could only eat 3 or 4 pot stickers, but I could eat a whole cup of egg flower soup. You can buy egg flower soup mix in the grocery stores, or you can make it yourself. It’s typically 2 cups of chicken broth, about a tablespoon of frozen peas and carrots, you bring that to a boil, beat an egg and slowly stir it in, you can add a little sesame oil to make it a little more interesting. It’s easy to make, eat and digest and has a little bit of protein. I probably had that soup every other day when I was sick.

So the first 2 weeks I had shaved my head ordered a couple wigs and some head scarves. I was getting sick to my stomach every day and had no energy. But I felt like I could handle this. Then the phone rang, it was my oncologist, When the head of oncology calls you at home in the evening it’s never good news.

I had no idea that when they biopsy a tumor they put it in a petri dish and watch it grow. Apparently mine had been growing like crazy, more so than a regular strain of B cell lymphoma. They had done some more tests on the tumor and discovered something awful. I had double hit lymphoma. That’s when everything changed. Chemo was now going to be in the hospital, 5 days straight of infusion, intrathecal chemotherapy, that means spinal tap or lumbar puncture and possible blood transfusions.

Welcome to R-EPOCH with Methotrexate. I don’t think I can handles this.