Why blog?

Warning: this is a long post!

As you already know, I have cancer. On March 17, 2022, I was diagnosed with myelodysplastic syndromes (MDS), which is a blood cancer caused by a rare bone marrow failure. I was crushed. At first, I cried. Big ugly tears and loud sobs. I felt paralyzed. Then I started researching and went down a long rabbit hole that I never should have started. But if you know me, you know I crave knowledge. I am not one who just waits for someone else to inform me. This is both a positive trait and toxic trait of mine. So, then I spiraled and began to realize that at 39 years old, I am facing my own mortality. My husband and I have only had ten years together. We had just celebrated our tenth anniversary a couple of weeks earlier. And our daughter’s tenth birthday was only 2 days later. Our son (from my first marriage) is only 12. My kids are young. My marriage is young. We still have so much to experience together. But instead, in a matter of days, I was worrying about my timeline. If you haven’t been in that place, then you don’t yet know the darkness that exists. It felt unfair. I literally laid in bed at night unable to move my arms or legs. It felt like I was in a tunnel. My anxiety quickly grew to the point where I needed medication to sleep. I didn’t take it every day, but it helped me for the first few days.

After learning my diagnosis and crying with my husband. We knew we needed to be strong and not alarm the kids. Despite our best efforts, they knew we were different. My husband’s students noticed things were different with him. But still, we had to move forward. We were faced with the reality of saying the word cancer to our families. I called my dad several times to talk about it. When I wasn‘t doing well and didn’t want to upset my husband, I called him. I asked him why bad things kept happening to me. His answer surprised me but was exactly what I needed to hear - “because God knows you are the strongest person in our family to handle this.” It felt like a calm came over me. After that, one morning, I just felt at peace with my diagnosis. I accepted it and was ready to fight. Instead of crying, I prayed and talked to God daily. Multiple times each day, actually. I have always been religious, but was not very spiritual in the sense that I didn’t pray daily. I prayed when I needed something or when someone needed it, but I didn’t make it a habit to just talk to God. When I started doing it, sometimes in my head, sometimes out loud, I noticed a shift in my demeanor and my mental health. I didn’t think about it as often. I just put all of my trust in God and His plan for me.

I knew it wasn’t enough to just talk to God. I knew I needed to get to know Him more, so I got a few devotionals and a study Bible. I wanted to understand Him better, which has really put my anxiety at bay. The verse that I have really leaned on is Isaiah 41:10:

How did I find out?

It is a long story, but one worth mentioning because it ultimately led to my diagnosis. My oncologist at Vanderbilt is amazing and I am so thankful that he was so adamant that I continue following up with him. Had he not continued following me, I likely would not have known I was sick until my MDS had progressed to acute myeloid leukemia, which is what can happen if MDS is left untreated or is more aggressive and rapid growing. I didn’t have any noticeable symptoms other than some fatigue, which I attributed to being a symptom of Hashimoto’s Thyroiditis Disease, an autoimmune disease that affects the thyroid. In 2020, I had a few health scares.

On August 1, 2020, I got sick while away for my daughter’s dance competition. Within a few hours, I had a 104.5 degree fever. I do not remember falling asleep at the hotel. I do not remember leaving the hotel at 4 am to go to the ER 25 minutes away. I don’t remember shoving “Big Debbie,” the ER nurse off of me when she tried to restrain me.

During this time, McKenzie was present. She was in the ER room and saw what was happening to me. McKenzie was eventually picked up from the ER by one of her teammate’s parents and taken to the hotel to retrieve her dance bags and costumes, so she could go to her competition. She went on to place 3rd overall in her solo, even after having been awake since before 3 am and witnessing what she did in the ER. That baby is so strong.

I remember waking up hours later covered in ice packs and a thin hospital gown, while Big Debbie introduced herself to me as the first person to ever shove her as she helped wheel my stretcher to my room in the ICU. That was when I learned what happened, but still didn’t know what was actually going on with me. I was septic and tested positive for viral meningitis, but how was never answered. I was discharged 5 days later, and Nick and I made the 4-hour drive back home with orders to be on bed rest for the remainder of the month. I did do blood work, which revealed the Hashimoto’s Thyroiditis Disease, so I began to make changes to heal from that.

On November 13, 2020 (my dad’s birthday), I tested positive for COVID-19. I knew the night before when I was cooking and could not smell the soup while I was standing over the stove and couldn’t taste it when I tried it. So I was once again, on bed rest and quarantined from the rest of my family for two weeks, including my husband’s birthday/ Thanksgiving. When I was finally able to come out of quarantine, I was able to return to work for a couple of days. On the second day, I got a UTI and started an antibiotic. I actually also took this antibiotic when I was hospitalized in August, but we didn’t see the connection until a little later while at Vanderbilt. I took my first dose of the antibiotic in my car while I was on a conference call and about 20 minutes before I went into the church for the funeral of a longtime family friend. I went from having a normal temperature when I walked into the church (they were doing temperature checks at that time) to shivering uncontrollably and feeling like I was in a tunnel. Nick and my parents kept telling me to leave and go to the ER, but I was not leaving the service. So, as soon as the service was over, I told Nick to take me to the ER. It was an awful experience and it took hours (and my vomiting all over the waiting room) before they actually took me back to a room. The ER doctor dismissed it as an issue with my thyroid, despite my 104 degree temperature and extremely high heart rate. The last thing I remember was asking (struggling to form the words) if I was going to have a heart attack. The ER was still ready to discharge me, so Nick had to demand that I be transported to Vanderbilt. I woke in the ICU triage a day and half later, unaware of where I was or why or how long I had been there. Again, I tested positive for viral meningitis, which is unheard of to test positive twice in just 5 months . After lots of testing, the doctors decided that this was a result of a severe allergic reaction to sulfa. But my blood counts were low. So, my now hematologist/oncologist was brought in to review me and requested a follow up once I was discharged. After a month, he brought me back for a three month visit, and then a six month visit. Because my levels never recovered to a normal level, in February 2022, I was ordered to do a bone marrow biopsy.

On March 4, 2022, I had the bone marrow biopsy at Vanderbilt. I was terrified, but the incredible nurse I had was amazing. She used a back massager on my shoulders the entire procedure to help to ease my stress. I cried the entire time, although the entire procedure from start to finish was only 20 minutes. On March 17, 2022, Nick and I had a Zoom meeting with my oncologist to receive the life-changing results.

What’s Next?

I met with the stem cell transplant oncologist at Vanderbilt on April 7, 2022. The only potential cure for MDS is a stem cell (or bone marrow) transplant. There we received more information about my disease, including the cause of my MDS, which is a gene mutation of the TP53 gene (the soldier gene that protects the body from cancer cells). We were encouraged that it is likely an acquired mutation as the percentage it showed up in my chromosomes was relatively low. We’ll find out a more definitive answer once the result of my skin biopsy return later in June or early July. How I acquired the mutation is still unknown and likely will never be known, through it is usually from an injury caused by a virus or exposure to some toxin. After I did more research, I discovered MD Anderson Cancer Center in Houston, Texas. After speaking to some friends, we decided to make an appointment for an evaluation at MD Anderson. That appointment was actually scheduled for April 10, 2022, so we knew after leaving Vanderbilt that we still needed to wait to decide what my treatment plan would be. I was still very stressed after leaving Vanderbilt.

I went to our daughter’s dance competition that weekend and then left on Sunday to fly to Houston. Lying in bed at the hotel Sunday morning, I suddenly had this overwhelming sense of calm and a random coldness over my body. It literally took my breath away and I gasped out loud. From there, I got up and got ready for the day before I started getting McKenzie ready for her dance competition. We drove from Owensboro, KY to Nashville, TN to catch a late flight to Houston. Monday morning, Nick and I were walking into our first appointment to meet with my oncologist at MD Anderson. When he walked out of the patient room, I looked at Nick and told him it was the first time I felt at ease about my treatment. I just knew I was meant to be there. From that evaluation, I was sent for lab work (19 vials of blood) and another bone marrow biopsy. This time, I knew what to expect and had zero time to even think about it. And after that, we were done and just waiting for the results of the lab work and biopsy. We flew home a couple of days later and the following Monday, we discussed the results and treatment plan with my oncologist. MD Anderson has two clinical trials that focus on the TP53 gene mutation. However, the one we thought I would get in was already in Phase 3 and randomized, so we went with the second clinical trial, which is in Phase 2. We flew back to Houston two weeks later, leaving behind our kids and puppy. After more lab work, insurance approval, and research approval, I started my first cycle of chemotherapy infusion on Wednesday, April 26, 2022. My infusions last for 15 minutes (plus the Zofran infusion and saline flushes - so usually an hour total treatment time) for seven days. On the seventh day, I also receive the investigational medication via infusion after my chemotherapy. I remained in Houston for my entire first cycle (each cycle is 28 days) and through my second round of infusions. After 38 days away, I was finally able to come home on June 1, 2022.

Now what?

I will return every 3 weeks for the beginning of the next cycle. I’ll fly in on Sunday night and leave the following week on Tuesday, the day after my seventh day of my infusions. I’ll continue to do this each month until MD Anderson is ready for my stem cell transplant. I don’t have a date for that yet and we still don’t have all of the details, so I will write about that later.

If you got this far, THANK YOU! If you have any questions, I am happy to answer what I can. I wanted to start this blog as a way to put my thoughts down and share my experience. My hope is that this helps someone in a similar situation. I want to share my journey, both good and bad. If you ever need someone to talk to, please email me and I am happy to discuss life or cancer and everything in between. Thank you for reading!

xo - Nicole