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!