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.
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…
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.