Saved me from death?
But not from cancer.
The Story of MICHELE RILEY
My cancer story is about faith, trusting your instincts, and weekly CBC Blood Tests. Of course, complete blood counts and even anaemia testing are a big part of the story. And my story has 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 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 to be the director of 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. But I was 38 and finding it hard to complete holiday tasks. I must do my usual weekly errands and work full-time as a registered nurse. However, I know what an anaemia test is, as it’s a common exam in nursing. At first, I told myself,
“Well, you are approaching 40. I guess this is to be expected.” But when I still felt tired 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 doctor and said,
“Something is wrong”.
The EKG was normal, so my doctor sent off some CBC Test blood work. The next morning, she called to tell me there must have been some error at the CBC lab because the results were “weird”. She wanted me to return for a Complete Blood Count redraw. Two days later, she called and said, “Your repeat bloodwork came back even more abnormal. Your Full CBC Test levels are extremely elevated, which means a haematological event is happening. We need to get you in to see a specialist ASAP”. Her voice faded, and everything around me blurred into the background.
Did my story have to begin?
My official diagnosis came in March 2007 after a slew of anaemia and other tests. I remember the CBC Blood Test lab tech making slides with my bone marrow and wanting to grab and hide them. I knew people would look at those slides under a microscope, take them apart, and list all the irregularities, which made me sad. They determined I had Myelofibrosis (MF), the most serious of the
Myeloproliferative Neoplasms (MPNs). 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 CBC Test for a Complete Blood Count 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.
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 Anaemia 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 my fatigue. I just went on living a hectic but very happy life.
Did I make it to Season 6? With very little change in my health.
Then, my CBC Blood Test results started going a bit crazy. My hematocrit became high, and my very thick 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. Life was difficult.
Over time, my symptom load gradually increased, and in Fall 2014, it reached a life-altering level. Dr C had retired, and God directed me to Dr S in a magical episode in Season 8. In 2015, Dr S started me on the 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 could volunteer as a mission 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 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 of CBC’s complete blood tests. In the summer of 2016, I was at work while still in that low-symptom phase. My coworkers were discussing the upcoming season of college football. John boasted about his Louisville Cardinals, and Jenn praised her beloved Clemson Tigers. I had never followed football, so I did not participate in their conversation.
Eventually, John insisted I join in and at least pick a side if I didn’t have my anaemia testing team to support me. To antagonize John, I said, “Okay, I choose the Clemson Tigers”. I didn’t even know what part of the country Clemson was in! And I researched Clemson, SC, the University, Coach Dabo Swinney and the players.
However, I started getting attached to those Tigers.
I also studied the rules of football. Moreover, 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 clinical trial 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 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 a validated remission, so it was worth at least thinking about. 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 for folks who had issues with CBC blood tests. 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 in July 2017 and wore my Clemson Tigers T-shirts and sometimes tiger ears to my weekly clinic appointments. Dr S called me Smiley Rily, 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 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.
Complete remission means complete cessation of symptoms.
My CBC test level is now normal, and my precious bone marrow has no irregularities for anyone to 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 not sure what the future holds. We will keep riding this wave for now. Seasons 12, 13 and now 14 are all about living a full life without blood testing 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!
But I also trained for and ran a half marathon. So I celebrated my 50th Birthday in Ireland with friends. An important Bucket List achievement. I became a Clemson donor in 2018. College Football is now one of my passions. Me, John and I have started the tradition of going to the Clemson vs. Louisville game together with our families each season.
Life is good and full of new opportunities!
But how long will it feel this way?
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 by CBC Anaemia blood tests 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 plan to try Facebook live sessions in 2020.
It is an additional way to connect with the other complete blood count patients. I sit on the MPN Research Foundation Impact Council. It helps the MPNRF identify patient needs and provide feedback regarding projects and outreach Anaemia Testing activities.
I recently attended an MDS Foundation Patient and Family Forum in Nashville to educate myself about MDS. I hope to find a few MDS patients in my area. Maybe they can 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. I want to pay it forward and help as many patients as possible.