January 7, 2011

Hydroxyurea - Essential Thrombocythemia - Home From The Hospital

I went in to the ER on Sunday night and I got to go home Tuesday afternoon.

It turns out the pins and needles sensation that I was experiencing (which was only on the left side of my body) was due to four TIA (mini strokes) that I had due to my high platelet count (984,000)! 

I was officially diagnosed with Essential Thrombocythemia (ET) - ( http://mpdfoundation.org/about_essential_thrombocythemia.asp) which is, a rare chronic blood disorder, that some still classify as a form of Cancer.  There is no cure and it lasts for the rest of your life!

I was started on the chemo drug Hydroxyurea (HU) - (http://en.wikipedia.org/wiki/Hydroxycarbamide) 500mg twice a day to lower my platelet count, HUMEX because my body has very little Iron and 325mg of aspirin every day.

I have experienced some side effects from all the meds, such as:  Fatigue, Dizziness, Loss of Appetite (this will be one way to lose some weight - not exactly the Weight Watchers Plan though), etc!

The HU chemo med says to avoid contact with anyone who may have any infections,etc.  Well, all I can say is, I better have some really GREAT doctors because with five kids and four of them in school, someone is always bringing something home.  Also, the drug says to handle the meds and the bottle them come in with extreme caution and to always wear gloves, etc.  This got me thinking, if I cannot even touch this bottle without gloves, can anyone (i.e. my husband and kids) touch me? 

I asked the pharmacist and she said I have to use extreme caution, she scared me to death. I thought, wow, can I give my kids kisses on their cheeks, kisses on their boo-boos?  I called the doctors office right away and asked the nurse these questions.  She responded with, "You have a appointment on Monday, go a head and ask the doctor then."  I told her to "please ask him for me.  The doctor said that the amount of HU that passes from me to my family, in those ways, is too small to affect them and that pharmacists often overstate to cover themselves. 

Also, the doctors were very to the point about us never getting pregnant again, due to the HU medication.  I already put this is in the back of my head because the doctor said if I was diagnosed with ET and had to be put on HU, I could not get pregnant.  Putting something in the back of your mind and hearing it in a hospital bed, are two different things!  My husband and I are blessed with five beautiful children and we had already made the choice to not have any more children but to have a disease/drug officially make that choice for you was mind blowing. It really was the first time that I thought to myself - I HAVE CANCER!

I sat there for a moment (okay for more than a moment) crying and thinking of all the things that would now be taking over my life and the life of my family:  Dr. appts, medications, hospital visits, etc.  The doctors say that ET is the best of all the blood disorders and that if you follow doctors orders and take the proper medications, you can live a full life and die of old age.  I just can't wrap my head around the fact that my blood has a disease and (though it's rare) my bone marrow could stop working one day!

After I had my pity party, I thought to myself, "Okay Shayna, you have to get it together for the kids and your husband"!  I am grateful that I was not diagnosed with Acute Leukemia, I was terrified of that possibility! 

The one good thing that has come from all of this, is that it has put a lot of things into perspective! 
It really made me realize what is IMPORTANT in my life -
My Health, My Family, and My Connection with G-D! 
I can work out everything else in my life, I can fix it, I can make it better.

I have an appointment with my doctor on Monday and hopefully we can get the medications regulated so that I will experience less side effects.  I will keep everyone posted.

- Shayna

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