Frankenstein in the Summertime…

Being diagnosed with Polycythemia Vera is a hard pill to swallow. I have dealt with so many crappy health issues for so long that I can’t seem to remember what it feels like to feel “normal”. A lot of people keep telling me “now that you have a diagnosis, at least you know what is coming and can have a plan in place.” The fact is, though, I don’t. Polycythemia Vera is like the black sheep of the cancer family. The “right now” treatment goal is to get my blood count down to “normal”. But, the “long term goal” is still undetermined. So, for now, I take a chemo drug. I hate it. I feel so sick and I hurt and I feel like I would rather go back to not knowing what I have. However, I take it orally – instead of IV. So, they said I only had a 30% chance of losing my hair. I LOVE my hair. It is my best feature… So, the thought of losing it was the hardest part of having to go through this.

Beach

After my 2nd treatment, I bragged “I still have all my hair!” The next morning, I got out of the shower to learn that my eyebrows fell off. It makes me look like I have a giant forehead; I feel like Frankenstein, LOL. I know that I can paint them back on and nobody will be the wiser… I also have a couple of bald spots. They aren’t as bad because I can hide them among my other hair. But, all the myths I have believed about hair loss have been debunked. I thought, if I was going to lose it, I would wake up one day and it would all be gone. It isn’t – it is happening very slowly. I thought when the hair was gone, it would be a bald smooth surface. It is grey and itchy and gross. Even my eyebrow area has “rough patches”. It makes crying worse because it feels awful when I rub my eyes – which makes me cry even more. And the hair that fell out of my scalp? It doesn’t “fall out”. Have you ever had one of those days where your hair feels “heavy”? And your scalp feels like something is pricking it? Multiply that by 1000. I was washing it, and I wanted to cry because it felt like I was ripping tape out of my hair. So, it doesn’t just “fall out”. It’s almost like the hair died and now I am pulling the remains out. And holy cow, my scalp itches like crazy. I feel like I am on the verge of becoming the disguise for Douglas Quaid to get to Mars…

Bald

I desperately hope that I am at the end of the hair loss. Like I said, I can hide those 3 bald spots right now. But, the thought of being completely bald is killing me inside. I love my curly hair. There are days that I feel like that is the only pretty thing about me. Also, I can’t stand how itchy I am. I guess if I do go completely bald, (at least I hope) the summer heat might be a little more bearable.

And So It Begins…

I have been nagging at my husband to fix my blog for a long time – in doing so, I lost the writings I used to have. But, that’s ok. One thing I have learned is that there is always a chance for new beginnings. Every day is a chance for a do-over. So, this is my do-over blog.

Reset

I am a mom to 3 wonderful children. OK, I will admit it. They are teenagers now – almost adults, even (though my oldestĀ thinks that is an offensive term if I use it as a term to describer her). While God blessed me with all 3 of them, my youngest 2 share my DNA – sucks to be them! My oldest was gifted to me long after I decided I didn’t want more children. Isn’t that what they say – if you ever want to make God laugh, just tell him your plans. I wanted a son and a daughter and then I decided I didn’t want any more kids. But, meeting my husband gave me a 3rd child to raise, and I love her as much as my own flesh and blood. They certainly keep me on my toes. Because of them, I know how to do better research than the FBI…

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I am a wife to a man that I can never quite figure out. Sometimes I really don’t know what God was thinking when he put us together. He loves music of all genres – I rarely listen to it. He plays in a band, and his band practice nights are my DVR catch-up nights. I used to use it as a “date night” with the kids, but between finances and my health, I don’t get to as much anymore. He is a computer techy geek. I am lucky to know how to navigate this site! He is a homebody and I like to do and go; I love the outdoors – I think he is allergic to nature, LOL. If the saying opposites attract hold true, we are a match made in heaven!

Outside of that, I am your everyday ordinary person. I have been at my current job for a couple of years. My mom is my bestest friend on the planet. I am a wine addict (ok, I am not addicted to wine, I just enjoy it very much). Every day life antics keep me pretty busy. Oh, and I am a Polycythemia Vera Warrior. Lately, I have been letting that define who I am, I have forgotten the real me. But, time to put my big girl panties on and get back to the real world. Stay tuned for the drama to ensue…