None of this is any good… Or is it?

My skin is itchy and flaky. I’m not even sunburned this time! I have dry red splotches everywhere, dark circles under my eyes, I’m swollen and I walk like an old broken lady. I’m bald, I have no eye lashes and I have some even balder spots than others in my scalp. This morning, I swore I saw I frowny face in the hair that is left… Hair watching – I wonder if that’s a thing among chemo patients? I constantly feel like there is something crawling on me – which is made worse because I have a horrid fear of bugs in general. So, to feel like there are bugs crawling on my skin 24 hours a day and to have no relief to that, it is hard not to be in tears 24 hours a day. And holy-freak my scalp is ALWAYS burning. It burns because it is to hot. It burns because it is to cold. It burns because it feels like that time that I filled my Zippo up with fluid and put it in my pocket and then fell asleep – before burning the excess fluid off – and I woke up to a chemical burn on my leg (which I still have a scar from). My lips are numb and they are chapped, everything tastes awful and smells are even worse. I have like super-sensitive smell. And nothing smells good. I just want to sleep – which sucks, because I miss my husband and my family. I feel extremely lonely – All. The. Time. I get up, force myself to work, go home and am ready for bed. I wake up in the middle of the night sometimes wondering when my family is going to be ready to replace me. This can’t be easy on them – especially on my husband. This isn’t what he signed up for.

The hardest thing was loosing my hair. Vain – I know. But, for longer than I can remember, that’s the only thing I have found “pretty” about me. Let’s face it, I don’t have the prettiest attitude. I have always had acne issues, and my weight has gotten out of control. But, I always had pretty hair. And I considered myself lucky because I could have it curly whenever I wanted – or straight, if I wanted it that way (although that took HOURS – but the end results were always worth it). So, when my hair was going, it was going in clumps. Chunks and chunks at a time, and we decided just to shave it and be done. At least that was something I could control in all of this. My husband told me to look into donating it, since it was pretty long still. But, alas, it was already to dead to donate. Chemo kills off healthy cells pretty quickly. I was boo-hooing about how there’s not a damn bit of me that is any good for donating. I can’t donate my organs, I can’t donate my hair – I can’t even donate my blood that they take out every couple of weeks. Not even to Science! I would feel a little better if at least some of it was being used to study Polycythemia Vera – the disease and the mutation and how to treat it. My husband told me I was making to big of an issue out of it. I felt my temper kick in – but (gasp!) I didn’t give in to the desire to let him know that pissed me off! I even told him he was right… WHAT HAS HAPPENED TO MY MEAN SPIRITED TEMPER? Am I not known as The Grumpy Quinn for a reason?

So, today, as I was whining and complaining about how miserable I feel – I even made myself an ice pack hat for today’s accessory. My mom had told me and I just kept thinking “None of this is any good. Not one bit.” So, then, what’s the point of all of this? Typically this is where my sulking would take me down some dark alleyways. But, not this time. Because, for one, this is to get my blood numbers down from toxic levels (aka – to extend my life span). But, then I think about how much I have already taken from this. I have taken that life is so short. I am 36 years old and I am bald, I can hardly walk, I am always tired and I am missing out on life. All those trivial things that make me irritated – are they really worth it? Like would it really be worth it to argue with my husband because “he hurt my wee little feelings”? NO! Is it worth it for me to have the last word with my kids? Maybe. But wouldn’t it be better to find the fun we used to always have together? Absolutely! Is it worth it for me to always be right? Probably – but is it more worth it to find a middle ground to coexist with others on? Definitely.

So, when I am sitting up in the middle of the night unable to sleep and being pissed off that I am going through this, at least I can find comfort in maybe these are reasons of why… life is short. I don’t have forever to make things work the way they should. Let go of the things that I can’t control (I am such a control freak – I have NO clue how that’s gonna work out) and LIVE!

Ice pack hat

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.


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.

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.


I am a mom to 3 wonderful children. OK, I will admit it. They are teenagers now – almost adults, even (though my oldest 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…


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…