STORY OF MICHELE RILEY

My Anaemia and cancer story is about having faith, tests and trusting your instincts. Of course, there are many episodes and a wonderful and important supporting cast and crew. I am the star of this story, but I am also the director. My CBC Test Doctor is the director of photography. He has the “vision” of how to orchestrate my treatment plan. But all decisions are ultimately mine. My best advice is: Always be the director in your story. In other words, always have an active role.

My story begins at the end of 2006. I found myself struggling through the holiday season. I was 38 and finding it hard to complete holiday tasks, do my usual weekly errands, and work full-time as a registered Anaemia nurse. At first, I told myself, “Well, you are approaching 40. I guess this is to be expected.” But when I still felt fatigued after the holidays were over and I woke up a few times with sudden but brief chest pain in the middle of the night, I went to my Complete Count doctor and said, “Something is wrong”. The EKG was normal, so my doctor sent off some blood work.

The next morning, she called to tell me that there must have been some error at the lab because the results were “weird”. She wanted me to come back for a redraw. Two days later, she called and said, “Your repeat bloodwork test came back even more abnormal. Your CBC is extremely elevated, and that means there is a haematological event happening. We need to get you in to see a specialist ASAP”. Her voice faded, and everything around me blurred into the background. My Cancer Story had begun.

Official Diagnosis

My official diagnosis came in March 2007 after a slew of tests. I remember the lab tech making slides with my bone marrow and wanting to grab them up and hide them. I knew people would look at those slides under a microscope, pick them apart, and list all the Anaemia irregularities, which made me sad. They determined I had Myelofibrosis (MF), the most serious of the Myeloproliferative Neoplasm (MPN) cancers. No definitive cure or real treatment at the time.

The good news was that MF usually progresses very slowly. The bad news was that they could do nothing about the fatigue. It was now my new normal. My doctor, Dr. C, told me, “Only God knows your expiration date. So go out there and live your life fully!” He told me promising new CBC Cancer Research was happening, which would hopefully mean treatment options in 5–7 years. A stem cell transplant would be our backup plan. He thought I could coast for 5–10 years. I decided I would look at my journey with optimism. My parents gave me a T-shirt that said, “Attitude is EVERYTHING! Pick a good one!”. Instead of a dramatic single movie story with a sad ending, I was going for a sitcom with many seasons.

Seasons

In Season 1, I focused on learning new ways to stay healthy and find better ways to balance my life. The season included a 2-parter where, through a crazy turn of events, I found out Dr. C and I both belonged to the same meditation group. It always warmed my heart on the nights when I looked up from my cushion to find Dr. C on the cushion beside me. It was a hug from God. I felt confident in my team and treatment plan, and periodically, God sent signs to reassure me. By Season 2, I had lost perspective of how tired I was. I just went on living a hectic but very happy life.

I made it to Season 6 with very little change in my health. Then, my hematocrit became high, and my very thick Anaemia blood caused me to be very tired. I began going once a month to have 500 ml of blood removed. I’d have to receive a fluid bolus to replace the volume or pass out. I continued to feel weak, and the resulting low iron from the frequent phlebotomies caused constant irritable leg syndrome. I never slept well. Cancer life was difficult.

Symptoms

Over time, my cancer symptom load gradually increased, and in Fall 2014, it reached a life-altering level. Dr C retired, and God directed me to Dr S in a magical episode in Season 8. In 2015, Dr S retested and started me on the cancer drug Jakafi. It was one of the discoveries from research Dr C had told me about in 2007. Season 8 was like a new beginning. Living a low-symptom life was AMAZING!! I was able to volunteer as a mission Anaemia nurse in Honduras again and run in 5K races. I did more travelling, too. The great response to Jakafi lasted through Season 10. And then the symptoms started drifting back, and my Anaemia blood started showing new changes. We were at a crossroads.

Before I can tell you about Season 11, I need to do a little recap. In the summer of 2016, I was at work when I was still in that low-symptom CBC blood cancer phase. My coworkers were discussing the upcoming season of college football. John was boastful about his Louisville Cardinals, and Jenn was praising her beloved Clemson Tigers. I had never followed football of any kind, so I was not participating in their conversation.

Teams

Eventually, John insisted I join in and at least pick a side if I didn’t have my team to support. To antagonise John, I said, “Okay, I choose the Clemson Tigers”. I didn’t even know what part of the country Clemson was in! And I did a little research about Clemson, SC, the University, Coach Dabo Swinney and the players. I started getting attached to those CBC Tigers. Also, I studied the rules of football. I intended to learn enough so I could adequately razz John. But Clemson was doing well that season, and I quickly got drawn in. I told him “We” (Clemson) had “Tiger Power” and we would win the National Championship. The crazy thing is, WE did!! From then on, I was hooked. I used the phrase “Tiger Power” to personally proclaim the reason behind victories for Clemson or myself. #TigerPower became part of my identity.

Now, back to spring 2017. Things were changing and not in a good way. Dr. S gave me options. My gut said “No” on SCT. He had a new Anaemia clinical trial test that he was especially excited about but was hesitant about enrolling me. The new trial involved paring the Jakafi I had been taking with an investigational cancer drug. These drugs had never been paired before, and Dr S said there was a risk it could cause harm. A low risk, but still a risk. He did have a patient in the trial who had recently achieved remission, so it was worth at least thinking about.

Back Home

I went home and started researching the investigational drug. It was not yet named, so it was known by the alphanumeric the FDA had assigned to it. I didn’t notice it immediately, but a sign was in the name. When I saw it, I knew I had to enter that trial. The investigational drug was TGR-1202. TGR, as in Tiger! It had Tiger Power!! God had set the events that led to my becoming a Clemson Tiger fan, so I’d see the “Tiger Power” sign and not fear the clinical trial. It all made sense that I suddenly became a college football fan at 47!

I told Dr S my Tiger Story and that 2 was my favourite number. “I will be Patient #2 in remission! “You just watch”, I told him. He chuckled and said, “Okay, let’s go for it!” I started the clinical trial and CBC Profile in July 2017 and wore my Clemson Tigers T-shirts and sometimes tiger ears to my weekly clinic appointments. Dr. S called me Smiley Riley, and soon, the staff knew about Smiley Riley in the tiger ears and insisted she would achieve remission. Everyone was so supportive! I have photos of some of them in Tigers ears, too! By November, to everyone’s delight, I had reached complete blood count cancer remission!! I’ve enjoyed telling my Tiger Story over the years. If you keep an open mind, I believe there are messages for all of us to help guide us on our paths.

Remission means cessation of symptoms

My CBC panel test is now normal, and my precious bone marrow has no irregularities that someone can list. I feel better today than I did in my thirties. I remain in the clinical trial and recently passed the remission 2-year mark. We are still determining what the future holds. We will keep riding this Anaemia wave for now. Seasons 12, 13 and now 14 are all about living a full life without limits. I joined Iron Tribe Fitness and did High-Intensity Interval Training (HIIT) under the careful watch of my coaches. And I run, jump on boxes, lift weights and do real pushups!

I also trained for and ran a half marathon. But I celebrated my 50th Birthday in Ireland with friends, an important Bucket List achievement. I became a Clemson CBC Donor in 2018. College Football is now one of my passions. John, me, and I have started the tradition of attending the Clemson vs. Louisville game with our families each season. Life is good and full of new opportunities!

Patient Support Group

My doctor and I decided that we needed a patient support group in our part of the country. He wanted me to include MDS and MPNs because they have recently discovered that these diseases overlap. They are like cousin diseases. So, I started a private Facebook page called Nashville MPN/MDS Support Group for patients in Tennessee, Southern Kentucky, Northern Mississippi, Northern Alabama and Northern Georgia. Right now, we offer support via the group page only, but we hope to hold meetings several times a year once we have enough interest in formal meetings.

I also plan to try Facebook live test sessions in 2020 as an additional way to connect with CBC patients. Also, I sit on the MPN Research Foundation Impact Council to help the MPNRF identify patient needs and provide feedback tests regarding projects and outreach activities. I recently attended an MDS Anaemia Foundation Patient and Family Test Forum in Nashville to educate myself about MDS. However, I hope to find a few MDS patients in my area to help me with the group and be administrators on the Facebook page. I have received so much support from many wonderful people over the years. But I want to pay it forward and help as many patients as possible.