by: Donna McBroom-Theriot/ @MyBookofStories

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         One of my sisters took my mother to have a test run at the hospital this week. It was either a nerve test or a brain test. It escapes me at this moment.

         We already know she has nerve so that may not have been the test. Then, after you look at the picture below, you will see why it must have been a brain test and why this phrase, borrowed from the Wizard of Oz, seems so appropriate: “If I only had a brain”.

 

Ouch!



After viewing this photo, the after affects of having collided with a curb and using her face as a shield to the – brain? – itleads me to the conclusion that I have inherited my pension for accidents – clumsiness, lack of grace – from my mother. Hence, “If I only had a brain”.


         After I was diagnosed with two rare blood disorders, she was worried that she had somehow passed a defective gene on to me. I assured her that she had not; but she had passed something far worse on to me – clumsiness! It seems as though my grandmother also suffered her share of falls.


         If you recall – and I’m sure you can, but if you can’t, here is the link: My Life. One Story at a Time.: Elderly Entertainment, my mother suffered another fall two years ago. She took a nosedive down the steps attempting to use her head as landing gear. Sadly, I do not have a photo to compare to this one. I assure you that it was just as bad, even requiring stitches.


         I haven’t quite figured out what is Southern about this story, other than some of us Southerners were born without the grace factor that I tend to associate with Southerness. Try as I might, an easy, gracefulness escapes me. Hubby says I prance. I don’t think that qualifies as gracefulness, however, it does qualify for the raison d’être I have suffered my own litany of accidents – bruised rotor cup, dislocated fingers, fractured fingers, injured ligaments, nerve damage to a hand…the list goes on. I remember being called into the doctor’s office and isolated from Hubby while they inquired whether I was being abused or had been abused. The ludicrously of the entire scenario had me laughing hysterically. That may have given them the impression that I was a bit loony. Oh well – at least they didn’t schedule a “brain test”.


         Getting back to my Mother, fortunately, for her, this fall took place at the hospital. She had an entire staff of nurses who came running to her rescue – which reminds me, I still have not figured out where my sister was while all of this was happening. All my mother wanted to do was continue on to her appointment – gotta find out about that brain. The nursing staff had other plans – which included several hours in the Emergency Room and a re-scheduled appointment. Mother is back home, stiff as a board, and sporting lots of bandages.


         Not to be left out of the excitement, my Godfather, her brother, was in an accident Tuesday morning. While driving over an overpass, he rear-ended a truck as he was cresting the bridge, causing a four-truck accident with at least two totaled vehicles. I am now realizing that I forgot to ask why the traffic was stopped in the first place. He’s home and doing fine. He phoned me yesterday and then again this morning. He ended our phone call so his wife could clean and re-bandage his wounds – so he may not be doing so fine at this particular moment; especially if he looks like his sister – and I’ve been told he actually looks worse.

 

Bumper Cars!

         Aging should not be about competition and comparing wounds – Bumper Cars and Skip the Curb? Will these siblings ever grow up?


         That’s what is going on in the South. What is going on in your neck of the woods (to quote Al Roker)?

 

Two rare blood disorders?

 Can you be diagnosed with two rare blood disorders?

Apparently, you can.

On Tuesday of this week, I had a doctor’s appointment with my oncologist. Just the fact that I now call him “my” oncologist is a little unnerving.

     He added a second rare blood disorder to my original diagnosis of Essential Thrombocythemia. He attached Polycythemia Vera to my blood disorders.
     Essential Thrombocythemia causes the bone marrow to produce too many blood platelets. Polycythemia Vera is an elevated red blood cell count. One of first courses of treatment for PV is to have the person give blood to lower the red cell count. I cannot give blood because my blood platelets would think they were losing some of their friends and scurrying around finding (making) more. He called it a “double-edged sword”. Doc will also be monitoring my blood every three months for the immediate future.
     Hubby made the comment on the drive home that it probably had something to do with my menopause and as soon as that cleared up, everything would straighten itself out. I was thinking – but not saying – I’ll let you and the oncologist talk about that one ‘cuz I’m not touching that with a ten foot pole. Then, I thought, could he be in a larger state of denial that I am. Probably.
     Then, as I was sitting down typing, trying to wrap my thoughts around all of this new information, I looked at my arms – which happen to be the extremities that I can see as I sit here typing – and this picture show began playing in my head. I could see the bone in my arm and the little blood marrow elves were working so diligently at producing blood platelets that they are exhausted. I want to tell them to slow down and rest.
     This brings me to one of the symptoms – tiredness. I have been extremely, unexplainably tired for the last couple of years, so much so, that I began taking a B-12 vitamin and then a multi-B vitamin – to no avail. I take enough Vitamin B to give an elephant ADD. I’ve been so tired that when I actually wake up and feel rested, I want to sit up and say, “Wow! I don’t feel tired!” I am just tired of being tired. AsJeff Foxworthy would say, “Here’s your sign.”
     Then, another picture flashes through my mind of the little Keebler elvespulling on the icing bag and making huge, beautiful, red blood cells and them joining the already overloaded blood cells cursing around in my veins. Remember the Keebler cookie commercial where the elves pull down on the chocolate icing bag and chocolate icing plops down onto the cookies? Now you can understand why I don’t watch scary movies. My imagination has a life of its own.
     The doctor also told me that within the year, he would probably have to take a sample of my bone marrow and bone to analyze. He was also adamant about us NOT going home and watching a video of it on the internet. He does not know me very well. I cannot look at a cut without losing my lunch. Besides that, someone already told me about their experience having bone marrow extracted. It wasn’t a pretty sight. I do not need to watch a video of it. My mind is a terrible place to be on its own – without the extra help. Apparently, they are having a problem with people going home and watching videos of procedures and then they are hard to calm down. I asked him how much Valium they give. He made it a point of telling me that they use a local. So much for visiting Happy Land.

Hubby, not being privy to the conversation I had about the bone marrow extraction, asked Doc to explain the procedure. Doc then asked me to sit forward and he poked me in the behind on my pelvic bone. My response was a loud yelp. He poked in the exact spot that I have had a pain for a few weeks. I explained what happened. As if that wasn’t bad enough, he said okay, and did the same thing on the other hip. He then proceeded to tell Hubby about the procedure (holding pressure on my nerve the entire time). Hubby – one thing – payback’s a bitch! That hurt.

     While we were sitting in the waiting room, a woman sat down next to us and proceeded (without prompting) to tell us her life story. She did not even introduce herself. I guess she needed to talk to someone. She told us about her diagnosis and treatment, and a lot more. Actually, more than I needed to know. Maybe she doesn’t have anyone to talk to. She did say something that I had not voiced. She said that she was angry and her husband did not understand why. She tried to explain to him that she was angry that her body was betraying her with the cancer. I could understand that.
     I feel the same way at times. I look at my arms or my legs and it is as though I can see my body at war with itself; and I get angry. I don’t act on it and I don’t tell anyone, but the feeling is there. Then, I just step back and tell God it is in his hands. I want it to go away, but His will be done.
     That is about all I have to ramble about today; other than, I finally organized all of the books that I have to review. They are all neatly placed on shelves with a sticky note with a number to coordinate them to my spreadsheet. I feel so accomplished! And, my sister dropped by and I unloaded most of my donate box to her. As she was leaving, she made the comment that she felt like a bag lady. I decided that my addiction to bags had finally come to the point where I needed to gift someone with those that I no longer use. Even though the bags are used, they have all been carefully chosen and lovingly cared for and, they are like new and therefore, are like gifts.
     I even did something I normally do not do. I actually gave away a few books! It is also fig season and I have been busy canning figs. There is a bird nest in my tree and for some odd reason; the momma bird thinks the tree belongs to her. She may be finally realizing that I mean no harm to her or her babies because she hasn’t done a fly-by lately. That was a little unnerving the first time it happened. I even managed a few pictures after I parted a bunch of leaves and the little birds opened their mouths thinking I had dinner for them. I hope you enjoy them.

Thursday – Where Truth is the Dare

Question of the Day: Where Truth Is the Dare   [QUES OF THE DAY] [Paperback]

It’s Thursday again – and we all know what that means!

Here is this week’s question.

Truth? or Dare?

What are you hoping for?

(Hoping, not trying to make happen.)

I am hoping for my blood platelet count to stabilize and quit fluctuating and increasing. (I have Essential Thrombocythemia; my blood marrow makes too many platelets.)

(Only God can make that happen.)

Thank you all for participating.

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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.

Medication
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.

Plateletpheresis
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.
http://www.mayoclinic.com/health/thrombocythemia/DS01087 

 

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