My cancer story begins in the year 2000 on a sunny day in May. I was in nursing school, in a blood module, looking deep into a slide of my own blood cells under a microscope. My assignment was to identify our white blood cells, red blood cells, and platelets. My slide was filled with platelets. I asked my instructor if this was normal and she advised me to see my doctor.
So the story begins: I was referred to a hematologist/oncologist at the young age of 37. I was in college, a single mother of two school-age children. My doctor was an older and gentle man, who agreed my blood work had been “off” for years and said, “let’s do a bone marrow biopsy right now!” So here I was with my pants down in his small office, getting a huge needle stuck into my hip bone. Three weeks later at the follow-up appointment, I was diagnosed with a Myeloproliferative Neoplasm or MPN for short. What???
The type of cancer I was diagnosed with that day in late May of 2000 is Essential Thrombocythemia (ET). There are only 77K diagnosed in the US; therefore it is considered an orphan disease. ET is an overproduction of platelets. When you have too many platelets, the blood becomes thick and blood clots can form. I have to watch for thrombosis, heart attack, strokes, and DVTs.
There is no cure, no medications specifically for us and I will never get to “ring a bell” since it is considered a chronic cancer. I cannot get life insurance nor can I donate blood. I spend a lot of money on medications and a lot of time at the doctors.
My symptoms are fatigue, itching, headaches, bone pain, and night sweats. I see a rheumatologist for bone pain, an endocrinologist for fatigue, and a neurologist for headaches. I go to my PCP every 6-8 weeks and see a local oncologist here in Brevard County along with an “MPN expert” at Moffitt Cancer Center in Tampa.
The biggest issue I have with being diagnosed with a super rare cancer is I look ok on the outside but am sickly inside. Family and friends are sometimes not too kind when they cannot “see” an illness. Yes, I have cancer and yes, I have all my hair but if you turned me inside out you would “see” I am sick.
My ET has caused me to have continuous lacunar infarcts (a type of stroke) and I had to stop working in 2018. Currently, I am on an off-label medication called pegylated interferon or Pegasys. This type of injectable drug is tough on the body but will put your bloods into normal levels. I’ve been on interferon for two and half years and just recently it started to slowly bring my blood levels down, however not yet normalized. One thing interferon will do is bring out any dormant autoimmune disorder. So far I have been diagnosed with diabetes, hypothyroidism, and Lyme disease. Funny how one medication can bring out all those disorders hidden in my body. However, this is my only chance to get my blood normalized. One day I hope they find a medicine specifically for MPNs or even better, A CURE!
Since having been diagnosed more than 20 years ago, I am grateful each and every day I wake up and also grateful for all the blood sister and blood brothers friends I have made. We are all here to support each other and give each other hope. In 2000, I created MPNs R Us Facebook group. Here we can support each other in our disease, learn about new clinical trials, view a webinar, or just be there for one another. To date, we now are up to 420 members all located around the globe and it’s been a real pleasure to talk to each and every member. We no longer feel we are on an island and a community feel is just what we need. I am currently in the process of putting together a “Brevard County MPN get-together” at a local restaurant. So far, I’ve had a good response back.
Even though I have a rare and chronic bone marrow cancer, I can still live each day as if it is my last day here. My favorite bible verse is, “I can do all things through Christ who strengthens me.” His word is what I live by and I frequently say this saying when times get tough.
In closing, my cancer story started off when I was young and now at a ripe age of 58 I feel I can live a long time as long as I keep taking good care of myself and keep on the interferon medication that will keep my bloods normalized. After all I have a lot to live for!
To good health,
Joy Anderson, ET patient diagnosed 2000.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. It does not represent the views or opinions of anyone associated with MPN Research Foundation. Please consult your doctor before taking any action to manage your health.