“I hope my story will help others and I will not give up on this if you guys don't either.”
I am a 33-year-old newly diagnosed patient of not one, not two, but all three Myeloproliferative Neoplasms. I was diagnosed with an auto immune disease as a teenager (Ulcerative Colitis) and have spent most of my adult life in and out of hospitals in multiple major cities and states. I have had to surgically remove my gallbladder after two years of gall stone attacks and damage to other internal organs in 2012. Since then I have passed 18 kidney stones and have stones in my kidneys right now that are too large to pass naturally. If I didn't hit the medical lottery I was told by my crohn's /colitis specialist at UMIAMI hospital on my 33rd birthday, literally, that she was certain there was something wrong with my blood and I needed to rush to see a hematologist immediately. I didn't want to make anyone nervous unless or until I had a diagnosis so just like every other doctor I have been to since I got my driver’s license I went to the Monter Cancer Center in long island, New York alone.
Now mind you, I am already someone with moderate to severe health issues, I have been on Immunosuppressant’s for 7 years on the highest prescribed dose and I take 42 pills every day and I get bacterial infections pretty much every time I fly or am in a medical building which is pretty much weekly on travel and medical. So, I go to the Monter Cancer Center and get all sorts of blood panels done on me. They confirmed almost immediately that I had the JAK2 mutation and that I had essential thromboycthemia( A chronic MPN, characterized by an increased number of platelets in the blood) and they wanted me to come back in two days for bone marrow biopsy's and aspiration's. I went alone because I didn't want to cause panic, and was unable to get anesthesia. What a wonderful feeling it is to have a 4.5inch needle being drilled into your spine and hip bone chipping away and breaking pieces of your bones and into the actual liquid part of the bone marrow where they confirmed the scarring and the Myelofibrosis (a chronic blood cancer in which excessive scar tissue forms in the bone marrow and impairs its ability to produce normal blood cells) in early stages. A few weeks later my entire body with the exception of my private parts and hands, my entire body started developing skin lesions everywhere that doubled in surface every 48 hours. When I was sent to a handful of doctors for this all we confirmed is that this is something that can come and go and can last months at a time. This helped also confirm the Polycythemia Vera (is a chronic, progressive (MPN) primarily characterized by an elevation of the red blood cells). It has been over four months and I still have gross lesions on my stomach, ribs, thighs etc. I couldn't shave my beard until two weeks ago because the skin issues spread to my face and I wanted to cover as much as possible. I am not the type of person to ever feel self-conscious with my appearance or being intimate with someone or being in the dating world, until now. I couldn't even look at myself in the mirror and was disgusted by my appearance for the first time in my life I didn't like what was looking back at me in the mirror. But let’s forget vanity because that's gone out the window by now.
I am more concerned in the tremendous amount of silent/hidden pains that I am tortured with on a daily basis. Another patient on this website worded it so well when she called it a hidden disease. When the skin on my face cleared up, or when the beard covered it, everyone told me how great I looked when I literally felt like I was hit by a truck about ten times in a row. I can't tell you how many heating pads I have gone through to help with the pain. Since I have an inflammatory bowel disorder I can't take pain killers. One baby aspirin caused me to lose 2 pints of blood in 48 hours and I needed three bags of Iron and Saline infused to make me healthier, not anemic, or iron deficient. I had to start taking folic acid instead of injections of B12 shots daily. Also, I have been needing to remove a pint of blood or so every week or ten days since diagnosis because my platelet count doesn't stop climbing, nor does my WBC, RBC, hemoglobin and hematocrit which makes me very likely to have a blood clot anywhere anytime that could prove to be fatal. Most people I have shared this story with are unsympathetic at best, and others just think it’s a crap made up disease or that I am "playing the sick card" which I have never done in my entire life including when I was sick. I haven't been able to work, I have now also confirmed permanent nerve damage and neuropathy and loss of sensation in all of my extremities and nothing I can do alleviates the pain. I was labeled by the state of New York as permanently disabled and issued a handicap sticker which people give me a death stare if they see me park in a handicap spot and get out and look healthy to them, when on the inside I am the antithesis of healthy.
I am always in pain, which makes me nauseous and I keep fluctuating a lot in weight and diet. I have recently been prescribed Medical marijuana in the state of New York, and even that provides very minimal relief. My entire life changed the day that I was diagnosed with each of these three terrors and people think it’s a joke when I tell them I have cancer of the blood and bone marrow and I have no tumors and didn't lose my hair because I am not on chemotherapy although there have been discussions of me either starting Hydroxyurea (oral chemo) or Interferon alpha injections. The side effects will reap havoc on my stomach and I'm scared to start something that I may have to be on for the rest of my life.
For the first time in my life I understood mortality and had to set up a living will and medical proxy for all possible contingencies. I left my career in Miami and moved back home with my parents like I am a child. This diagnosis has caused a lot of tension and its prevented me from working, dating, keeping to a regimented schedule or be on time for appointments on many occasions. I have had days or weeks where I didn't leave my bed other than to use the restroom. I feel like this small community needs to have more support, information, events, etc. actually just shot an email to the event coordinator for this foundation about maybe doing a poker tournament and cocktail party as a fundraiser and an awareness raising tool. If anyone has been diagnosed or has a loved one that has been diagnosed I am always willing to talk to them for as long as they want about whatever you want whenever you want. I know how difficult this is for anyone to deal with but we need to find ways to make the most of this miserable disease and pray for more donations and more research and better treatment options. I hope my story will help others and I will not give up on this if you guys don't either. If anyone wants to reach out to me my email is SladeBlake@yahoo.com.
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 the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.