The Beginning (Spring 2020)
The questions I get asked the most are “How did it start?” “Did you have any symptoms?” “How did they find it?” The symptoms were random and seemed unrelated over a long span of time-fatigue, cavities, headaches, back pain, sweating, and infections. While I was officially diagnosed in 2020, I know I had this for a long time. I had symptoms dating all the way back to after Charlotte’s birth in 2015 when I was 29 years old. This is when the fatigue set in. This made sense. For those who know me, you know I almost died after Charlotte’s birth! That’s a whole OTHER story though! Everybody credited the fatigue to the catastrophe I went through following her birth and adjusting to life with a baby. That whole year of 2015, I had severe headaches every single afternoon. I had never had headaches before in my life. I found myself taking Excedrin migraine every day around noon while teaching math. I reported this to my doctor and did some investigating by getting my vision checked and getting an MRI of my brain (Myeloma does not usually show up in the brain, it is a very rare occurrence that it spreads to the brain). I was also getting a multitude of cavities. I had never had cavities before and suddenly, I had multiples at each visit. I know now that this is another initial manifestation of myeloma. I also had back pain (a telltale sign). I figured it was from carrying around my baby all the time. I went through multiple baby carriers but could never carry for her very long without my back giving me a very hard time. I wondered why other moms could hold their babies for hours but it pained me to do so.
More telling symptoms began to appear in 2020. Coronavirus was on everyone’s mind. It was certainly a crazy, CRAZY time in the world. In the spring, I spent my time working full time from home and watching both littles (one 4 years old and one 8 months old!) During that spring, I was extremely fatigued. It didn’t matter how much sleep I would get, I would wake up and feel the need to go back to sleep only hours later. I attributed this to the craziness of our new normal, having to work from home WITH the kiddos with no help. I believed that would make anybody tired. But this was a fatigue like no other. Closer to diagnosis, I was going to bed at 7:30 every night right after the kids. That summer, more symptoms began to pop up. I would sweat at night. As a person who was always cold, and I mean ALWAYS, this was bizarre. I would frequently awake to a damp, cold sweat and take my temperature. It was always normal. There was never a fever but always a light sweat. This sweating soon began to happen during the day. Intense flashes of heat would leave me in a soaking sweat. This was certainly not something I had ever dealt with. Then, I kept getting urinary tract infections. It was something I had always been prone to getting since high school. They gave me antibiotics but it kept coming back. This was something that hadn’t happened with them before. One round always knocked them out. I went to the doctor and they set me up with a nurse practitioner. During the visit, she asked when my last physical had been and I told her it had been awhile. On my way out the door with even more antibiotics, she waved to me from the waiting room door as I was checking out and said “Remember, I know you’re busy, but you really should look into getting that physical!” I had zero intention of getting one. We were on the cusp of returning to school for preplanning. I really didn’t want to take off during the first couple of weeks. I had just come off of maternity leave and had used all of my days. I had a ton of work to do to get my classroom ready. The kids had their physical appointments scheduled. I had to get Dusen into the vet. There was a lot going on. I had also just had Hayden and they had done blood work and such so I really didn’t think I needed one. However, for some reason, I kept replaying that suggestion in my mind. I kept thinking about what she said. I called my mom and felt bad about asking her to come over to Tampa to watch the kids so I could get a physical (they were still home 24/7 due to covid). I remember the conversation. We both went back and forth about whether I should get one or not but ultimately decided she would come over just for a day or two since her schedule was clear. I was very close to not getting that physical! Thank GOD I did. If you believe in the universe trying to tell you things (I’m still undecided but starting to think there is something), the nurse urging me to get a physical was one of them. I owe that woman my life. A week later I went in for my physical. I told the same nurse practitioner I felt fine except for some back pain. I couldn’t sleep on my stomach at night and thought I must have pulled something. I told her I had a TON of fatigue (this was probably the number one symptom), and some random hot flash-like sweating. We both agreed these were classic postpartum and hormone-related issues. I went for a blood draw and went on with my life. About a week later I got a call. I was in the kitchen making Charlotte a snack. The nurse practitioner reported my results were back. I was very anemic (but had been for years) and there were lots of other abnormalities across the board. They wanted me to start taking iron supplements. They also wanted me to come back after 2 weeks of iron supplements and have the bloodwork repeated as it was probably just a fluke. She sent me to have more CBC blood tests done and also ordered a whole other set of labs (CMP). School had been delayed by 2 weeks because of coronavirus so we took advantage and went on a little vacation to my mom and dad’s house. The nurse practitioner called and said that the second CBC came back abnormal and the CMP also came back abnormaI. My hemoglobin, hematocrit, white blood cells, protein, calcium, and sodium were dangerously off, among others I can’t even remember now. She still believed it could be a fluke and wanted me to do one more set of labs. Now I was becoming a little concerned. I started to google all of my blood results that were out of range. Everything I came across kept mentioning “yadda yadda yadda… and in rare cases, multiple myeloma.” This thing called multiple myeloma was showing up in every blood value I researched. I had never heard of it before but spent the rest of the vacation researching and panicking. When I read the underlying symptoms, it was as if I could check every.single. box. I knew then that this was it. I didn’t need a proper diagnosis. I had a sinking feeling that this was definitely it. Everything I read was very discouraging. The average life expectancy was measured in months, not years. It was incurable. It was highly unlikely people with this cancer made it 5 years past diagnosis. I was very frightened that it could be this cancer but tried to hold it together until I had a doctor’s opinion. When we got back to our house, I went back to work for preplanning. I was working in my classroom when the nurse practitioner called. She said the third set of results came back and they were still very abnormal. She wanted me to make an appointment to see a hematologist oncologist. I knew an “oncologist” treated cancer. She still reassured me it was probably nothing and could be something like an autoimmune disorder. I remember questioning her directly about multiple myeloma. She said “I’m not really the gambling type, but if I was, I would bet a lot of money that it isn’t something like cancer.” I still was beside myself. I couldn’t stay at school. My head was spinning. I couldn’t concentrate. I went to my administrators who were in the cafeteria cleaning up from our meeting. In tears, I told them what was going on. They told me absolutely to go home and figure things out. I left that day not knowing it would be my last day as a teacher after an 11 year career.