Sunday, March 11, 2012

Sunday's From the Heart – Sometimes when life gives you lemons, do you make lemonade or do you just throw ‘em away?

March 4, 2012

            Last week, although it seems like so much longer, I was diagnosed with Essential Thrombocythemia, an uncommon disorder where the blood marrow produces too many blood platelets. The exact cause is unknown (and doesn’t that just make you feel better). I went to the oncologist thinking I would get a simple diagnosis and a simple fix – like you’re too fat, go on a diet; or you can’t see, get glasses; or you can’t hear, get a hearing aid. What I was not prepared for was the conversation I had with the doctor. Since then, I have to admit, I have been a little crazy (lots crazy). Death keeps flashing before my eyes, along with nightmares at night, and my mind won’t rest. I know it is because it is all so new and eventually my insides and my mind will calm down.

            It was daunting to have an oncologist have this long word coming out of his mouth and still more daunting to know he was talking to me (kind of like the wonk, wonk in the Charlie Brown shows). I have always said that if I were ever diagnosed with a life-threatening disease, I wasn't sure if I would take treatments to prolong my life. I would leave it in God’s hands. Then, all of a sudden, I am diagnosed with an uncommon blood disorder and it could progress to the point I would need chemotherapy. I think I may be starting to rethink that decision. Amazing, when death is at your door, you start to reconsider what you considered to be well thought out decisions.

            At this point, I still have not wrapped my head around what is going on. It all came about so nonchalantly. Hubby and I applied for long-term health care insurance (for when we get OLD, NOT now). He was accepted, and even received an above average rating. I received a letter from the principal. It stated I had been denied coverage due to having abnormally high blood platelet results on my blood work. It seems my platelet count has doubled in the last eighteen months to almost 700,000, and there is really nothing I can do to stop it. My doctor has me taking a low dose aspirin hopefully to prevent the platelets from forming blood clots. Other than that, the only thing left to do is monitor the platelet count (and pray). (When the platelet count rises to 900,000-1,000,000, then treatments are decided. This is one time when you do not want to be a member of the millionaires club.

            I’ve been spending a lot of time the last few days thinking and rethinking about whether I would take chemotherapy treatments, when it comes to that. The drugs increase a person’s chances of developing Acute Myelogenous Leukemia (a type of blood and bone marrow cancer that progresses rapidly) or Myelofibrosis (a progressive bone marrow disorder results in bone marrow scarring, severe anemia, and enlargement of your liver and spleen.) Not a lot of choices there to choose from.

            I find myself suddenly rethinking my position on not taking life-prolonging treatments. I am finally re-building my relationship with my younger daughter and I want to spend time with her doing all the mother/daughter things we had stolen from us. I want to teach her to cook different recipes of mine that she loves. I have a relationship to mend with my oldest daughter.

            I have also been wondering if this has happened because I’ve spent a large part of my life (mostly when I was deeply depressed) wishing it had been me rather than my sister who died of Leukemia. I wonder also if it’s because I have been so adamant in my decision not to do anything to prolong my life if I became sick. At the moment, I find myself quite confused and uncertain.

            The oncologist’s office is located in the cancer center at Ochsner Hospital, which is detached from the hospital. I wasn’t expecting to feel the way I did when I walked through the doors. I hadn’t given it much thought before I got there. I felt as though I were walking into a brick wall. Either it is a building where life ends, or the struggle for life is being fought. I had one of those moments where my life flashed before my eyes and I had to sit down. I’ve been having a lot of those moments lately (been doing a lot of sitting).

            I think about the rebuilding of my relationship with my youngest daughter. It is still on precarious ground at times. Will I have time to break past the barriers that stand between us? Will I have the time to get her to realize that not everything she believes is necessarily true, that her trust was misused and the result was the separation between us? Will we have the time to rebuild our relationship?

            Then, there is my oldest daughter. She hasn’t spoken to me in ten years. I have two beautiful grandchildren whom I have never met and a daughter who doesn’t want me in her life. I need to repair my relationship with my oldest daughter. I put my relationship and our healing in God’s hands a long time ago. The broken heartedness is bigger than anything a human is capable of healing. I love her more than life itself and I think she hates me about that much. I was the best mother I knew how to be, but I made mistakes and she has been less than forgiving. I do not blame her. She has also had her trust abused. The disheartening thing about someone abusing your trust, sometimes you don’t know they are doing it. I’ll take her wrath. I want to make amends. I want the hole in my heart to fill and I want the hole in her heart to mend.

            Then, lots of crazy thoughts enter your mind. The doctor prescribed a low dose aspirin for me take each day. When there is an overload of platelets, they tend to stick together and cause clotting. We all know what that mean, heart attacks, strokes, etc. I was standing at the counter about to take that one little tiny aspirin and I briefly thought (crazy thoughts) that maybe I should take more than one to get a jump on the clots. Don’t laugh until you tell me that you have stood there under the same circumstances and NOT thought that same thought. Then, rationality sunk in and I took one little bitty tablet.

            A few months ago, I became obsessed with going through everything I own and getting rid of the clutter. We never know when it will be our turn and I didn’t want someone to have to deal with all my “papers” I save and all the stuff that I think that I cannot live without (and truly can). My intuition has always been on the mark, even though I haven’t always figure it out at the moment it’s happening. Was my intuition running amuck or on overtime? But, then again, I love cleaning and organizing and go through spurts of this behavior on a frequent basis.

            I have actually been experiencing many of the symptoms associated with ET. I’ve just been blaming them on other things. I’m always bruising myself (can’t seem to stay away from corners) and my vision goes cockeyed at times. I find myself telling myself I need to put my glasses on so I can see and turns out they are on my face. I have arthritis in my hands and I contributed the numbing and tingling to that. I knew the pain was arthritis so I grouped the symptoms together. There are some other things but I won’t bore you with those.

            I will include a link to the Mayo Clinic if you’d like to read more about Essential Thrombocythemia. I am not good about asking for things for myself, but I am going to now. If you have a prayer list going on, I would appreciate it if you would add me to it. Also, if you have any information on ET, I would appreciate you leaving a link. Thanks.

Definition of Essential Thrombocythemia: Essential thrombocythemia (ET) is an uncommon disorder in which your body produces too many blood platelets (thrombocytes). It's also known as primary thrombocythemia (throm-bo-sigh-THE-me-uh). Essential thrombocythemia is one of a group of diseases of the blood and bone marrow known as myeloproliferative neoplasms.

Symtoms: Many people with essential thrombocythemia have no signs or symptoms. The first indication you have the disorder may be the development of a blood clot (thrombus). Although clots can develop anywhere in your body, with ET, they occur most often in your brain, hands and feet.
Signs and symptoms depend on where the clot forms. They include:
  • Headache
  • Dizziness or lightheadedness
  • Chest pain
  • Weakness
  • Fainting
  • Temporary vision changes
  • Numbness or tingling of the hands and feet
  • Redness, throbbing and burning pain in the hands and feet (erythromelalgia)
  • Mildly enlarged spleen
Causes: Bone marrow — spongy tissue inside your bones — contains stem cells that can become red blood cells, white blood cells or platelets. Platelets travel through your blood vessels. They stick together to form clots that stop the bleeding when you damage a blood vessel, such as when you get a cut. A normal platelet count ranges from 150,000 to 450,000 platelets per microliter of blood.
If you have essential thrombocythemia, your bone marrow makes too many platelet-forming cells (megakaryocytes), which release too many platelets into your blood. The excess platelets may not function normally, leading to abnormal clotting or bleeding.
The exact cause of ET and other myeloproliferative neoplasms isn't known. About half the people with the disorder have a mutation of the Janus kinase 2 (JAK2) gene. Other gene mutations also have been associated with ET. The role of these mutations in causing the disease is still being investigated. A rare form of thrombocythemia is inherited.
A high platelet count that's caused by an underlying condition such as an infection or iron deficiency is called reactive or secondary thrombocytosis.
The abnormal blood clotting of essential thrombocythemia can lead to a variety of potentially serious complications, including:
  • Pregnancy complications. Uncontrolled thrombocythemia can cause miscarriage, premature delivery, high blood pressure (preeclampsia), early separation of the placenta from the uterine wall (placental abruption) and slow fetal growth. If you have ET and become pregnant, be sure your doctor monitors you carefully throughout your pregnancy.
  • Stroke. A clot that blocks blood flow to your brain can cause a stroke. If you develop signs and symptoms of a stroke, get immediate medical attention.
  • Heart attack. A clot that obstructs blood flow to your heart can cause a heart attack. If you develop signs and symptoms of a heart attack, such as pressure, fullness or a squeezing pain in the center of your chest lasting more than a few minutes; pain extending to your shoulder, arm, back, teeth or jaw; shortness of breath; and sweating or clammy skin, get immediate medical attention.
Essential thrombocythemia can also cause bleeding (hemorrhage) with significant blood loss. A small minority of people with ET may later develop acute leukemia or myelofibrosis, both of which can be life-threatening:
  • Acute leukemia. Acute myelogenous leukemia is a type of blood and bone marrow cancer that progresses rapidly.
  • Myelofibrosis. This progressive bone marrow disorder results in bone marrow scarring, severe anemia, and enlargement of your liver and spleen.
Treatment and Drugs: Treatment of essential thrombocythemia depends on your risk of blood-clotting or bleeding episodes. If you're younger than 60, have had no signs or symptoms and have no other risk factors for developing blood clots, such as smoking, you may simply need periodic medical checkups. If you're older than 60 and have had previous signs and symptoms of blood clots, your doctor likely will prescribe medication or a medical procedure to lower your platelet count. Your doctor may also recommend treatment if you have cardiovascular risk factors, such as high cholesterol, high blood pressure or diabetes.
If you're at risk of blood clots, your doctor may recommend low-dose aspirin, particularly if you're pregnant. Aspirin makes the platelets less sticky and your blood less likely to form clots. If you take aspirin during pregnancy, stop taking it at least one week before delivery to lower your risk of bleeding complications during delivery.
Drugs that reduce the platelet count and are commonly used to treat ET include:
  • Hydroxyurea (Droxia, Hydrea). This drug suppresses bone marrow production of blood cells, including platelets. Also used to treat cancers, it's the most commonly prescribed platelet-lowering drug for ET. It's often used in combination with low-dose aspirin. If you take hydroxyurea, your doctor will monitor your blood counts closely. There's some concern that long-term use may increase the risk of developing acute myelogenous leukemia.
  • Anagrelide (Agrylin). Unlike hydroxyurea, anagrelide isn't associated with an increased risk of leukemia. But it's not considered as effective as hydroxyurea. Side effects may include fluid retention, heart problems, headaches, dizziness, nausea and diarrhea.
  • Interferon alfa-2B (Intron A). Given by injection, this drug is less convenient to administer than hydroxyurea or anagrelide, may be more expensive and may cause less tolerable side effects. Side effects may include flu-like symptoms, confusion, nausea, depression, diarrhea, seizures, irritability and sleepiness.
Used only in emergencies, such as after a stroke or other dangerous blood clotting, a medical procedure known as plateletpheresis can be used to rapidly lower platelet count. During the procedure, an intravenous (IV) needle connected to a tube is inserted into one of your blood vessels. Your blood flows through the tube and into a device that removes platelets from your blood. The remaining portion of your blood (plasma) and your red cells are then returned to you through an IV line. The effect is temporary.

Essential thrombocythemia — Comprehensive overview covers symptoms, causes, treatment of this blood clotting disorder. 

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  1. I'm sorry you have to deal with this condition. I hope the aspirin helps. I will pray for you and your relationships with your daughters.

  2. I will certainly be praying for your physical as well as emotional health as you go through this!

  3. Hi! First I have to say that I admire you for sharing this with us!
    I imagine that accept a thing like having this condition is not easy.
    I always wonder what my reaction would be if I have to deal with a life-threatening disease, and I honestly don't know! But the only thing for sure is that I would try to not waste time in thinking.
    I'm 22! And a couple years ago my father have a heart attack and when I was younger my mother was in hospital for 2 month in a intensive care unit. Since there, every time I fight with them, five minutes later I'm forgiving them! I really hope you can emend the relationship with your daughters.

  4. your post is so sad and brave at the same time, nothing I could say would be somethink you don't know already. so I will place a yellow ribon around the mast of my yacht and Take your spirit sailing and light a candle for remember life is an adventure. wingman

  5. You and I are connected through Triberr and I stopped to read this blog because I know quite a bit about life-changing health diagnosis and what you're going through right now. I don't know much about your disease, but I was wondering one thing -- are your additional platelets healthy or diseased in some way?

    If they are healthy is it possible you could donate platelets at a blood donation clinic nearby? My husband donates platelets every two weeks or so. It's not as draining to the body as taking a pint of blood, so you can do it more often depending on the number of red-blood cell platelets your body produces.

    I have several infectious diseases right now and can't donate blood for the foreseeable future. I'm A negative and used to go often because of the need for negative RH factor blood. My husband gives by donating, which in turn makes plasma, as his way of helping when I no longer can.

    The important thing to focus on right now is the fact that it is NOT cancer yet and you can follow doctor's orders to stay on track. Look into alternative forms of therapy to use in conjunction to what western medicine suggests. Never let someone else be the sole control in decisions regarding your health. Educate yourself on every aspect and become a part of your care and ongoing health.

    I wish you well regarding your daughters. I can't begin to understand the situation nor what you're going through and I can only imagine how difficult and all consuming the situation feels like when dealing with health issues on top of it. I wish you the best -- above all, stay strong. If you don't the battle is already lost.

    Don't wait around saying the problem and solution is in God's hands. Put the solution back in your hands by being reactive and active in finding a solution. I'm not religious -- but the best quote that applies to your past and current problems is a simple one "God helps those who help themselves."

    Wishing you the best -

  6. OMG. What a shock to come out of the blue. Words don't seem adequate. I'll pray for you and your daughters. Someone came between my mother and me and it was very cruel. I kept trying to reach her and at times I did and it was wonderful but the other person was there to bad mouth me and my mum's loyalty was to her friend who was 'wonderful' to her. I feel for you and your daughters. Blood bonds should be healed. Good Luck and best wishes.

  7. Donna, I am so sorry for this. It was probably a good thing you had to have the blood tests. My prayers are with you, and like your other friends, I am here for you.
    Whatever you decide to do, you must believe this is the action you were meant to take.
    We are never alone on our journey here.

  8. Wow, I'm so sorry you have to go through this, Donna. I've had health issues my whole life, so I know how hard they can be. The not knowing, to the diagnosis, to the "what the heck am I supposed to do now?". I hope you find comfort and hope in God through all this. I wouldn't be here today without Him.

  9. Hi Donna, I am commenting as anonymous because I don't want to show up in an internet search with my medical conditions listed lol, as I am still in the job world. But I also have ET which is how I cam across your blog. I feel much the same as you, and I also think, because it is an orphan disease, it is something we tend to go through alone- the risk, the worry, the decisions to make. I will follow your blog and know that my thoughts are with you and you are not alone.

  10. Someone recently found my blog via a search for Essential Thombocythemia and left a message. It brought me back to this post that I wrote over a year ago. Reading it has brought back a lot of memories. I've been going for bloodwork every three months as I was diagnosed with a second blood disorder (Polycythemia Vera). The doctor is monitoring my blood platelet count and my elevated red cell count. They are steadily climbing, fortunately, not at an alarming rate. I wanted to thank all of you that stopped by and read and responded to my story. To Anonymous - feel free to email me if you have questions. I met a wonderful person across the country who found me via my post and he has been a wonderful support system for me. My email can be found on my review policy page. My thoughts are with you all. Thank you.


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