How Are You Feeling?

How are you feeling?  A common phrase for a “sick person” to hear, often many times a day.  It is asked at work, at home, on the phone and via pretty much every online communication method that exists.  It seems like a simple enough question, and one that is predominately anchored in care and concern.  I am asked quite frequently how I am feeling.  My challenge lies in figuring out how to answer.

If you have read any of this blog, you know that I am working very hard at staying positive throughout all of this (though don’t you dare tell me to stay positive!)  I am human and I am generally (occasionally?) able to acknowledge my flaws and failures, and overall I am trying to keep things as normal as they can be under the circumstances.  Yet this innocent and sincere enquiry has actually proven to be quite difficult to answer.  Do people really want to know?  Do I tell them that I feel like garbage, that my legs are trembling and that I am sweating profusely under my hat?  Or do I flash a smile and toss out a casual “Peachy keen, jelly bean!” as I am often apt to do?  Both answers are honest – even when my body feels like it is killing me from the inside, most of the time I am able to maintain my tough and (dare I say) sunny disposition.  (Well, ok – maybe not sunny - it’s more like an upbeat sarcastic-and-inappropriate-humor type disposition.  I am who I am. Deal.)

So in order to effectively respond to the concerned questioning of well-wishers, I have decided that this blog post is going to address a few of the physical side-effects of chemotherapy.  Not as much fun as other topics I’m sure, but these are things that I want to make known – both to the people in my life and to anyone who might have a loved one dealing with chemo as well.  I’m not going to lie to you – it ain’t pretty, folks!

Right now my body is fighting two unrelated infections and I am on so many drugs I can hardly keep track.  They have me on SO many different pills - Anti-viral, anti-biotic, anti-fungal, anti-nausea, steroids, pain-killers and quite a few more.  I get dizzy often.  I get a lot of headaches.  I am regularly nauseated and unable to eat the things I used to love (oh yogurt how I miss you!).  Not to mention the other stomach ailments that chemo causes.  My tummy literally screams in pain sometimes (I’m not kidding!  It is soooo loud!)  It’s obnoxious and unpleasant, to say the least.

The hot flashes are DESTROYING me - seriously – they are so frequent – I’m talking 2-3 per hour.  My sleep is completely disrupted since I wake up every hour either sweating from a hot flash or freezing because I have unwittingly stripped down to my birthday suit and kicked off all my blankets. During my waking hours I get overcome with heat and sweat, then 5 minutes later I am cold because I took all my clothes off and blasted the AC.  I am literally to the point where I often HOPE this is menopause because I don’t think I can endure it more than once!  It is possible that this is a chemo-induced temporary shut-down of my inner lady parts (trying to keep it clean for the boys reading!) but early-onset menopause is another probable side effect.  There is no way for me to know at this point which I am facing.  I may get “normal” again during the year after chemo.  Or I may be permanently “changed.”

Another big one for me is the fatigue.  I want to go out.  I want to shop, to run errands, to visit friends and family, to do Yoga, to go on vacations, to go to concerts – to just get out!  Unfortunately I can’t.  I am still working 30-35 hours most weeks (and don’t tell me to take it easy – I am a workaholic – that is taking it easy!)  My work is my “out” time.  I leave the office (aka trailer) usually mid-afternoon and I go home and crash.  I don’t have the energy most days to do my dishes, to go to the grocery store, to do my banking – often to even stay awake. I NEED to lie down.  This is a big one that people don’t understand.  I can’t just have an extra cup of coffee and be fine (trust me – I've tried!)  I can’t go out and play, or have backyard dance-parties (a frequent occurrence for me and mine!) or do Wine Wednesdays with the girls, or go to my parents’ for dinner. The weather is finally getting nice and I SO badly want to sit on a patio on Whyte Ave with friends and sip a cold beer or a margarita!  These are the things I love and I just can’t do them.  It is very frustrating and might be the hardest part of all this for me.  I have always thoroughly enjoyed my independence and I genuinely hate feeling so needy.

There are many other treacheries of chemotherapy.  My bones ache terribly because of the drug I take to boost my white blood cells – an injection called Nulasta that has to be jabbed into my stomach the day after chemo.  My steroids cause intense heartburn.  My legs are weak and sometimes buckle because the chemo is attacking my muscles and nerves.  I get disgusting mouth sores to the point where it hurts to eat or drink.  And even on the days it doesn't hurt, my taste buds are broken and everything mostly tastes like cardboard.  For the first week after treatment, everything - even water - tastes poisonous and I have to force myself to eat and drink.  I am not allowed to get sick – even a minor infection can turn serious very fast for a chemo patient.  I can’t get a mani-pedi or go to a public pool (aka West Ed Water Park!) because of the risk of infection.  I have to be careful my skin doesn't get too dry and crack, because those little cuts can become seriously infected.  I have to take my temperature several times a day to ensure I don’t have a fever. My chemical-infused blood has weakened my body and I can’t fight off the simple human ailments like I used to.

This damn Chemo has changed things in my life (albeit temporarily – Thank God!) and one of those things is my beloved social life. Friends and family often ask me, “When can we get together?  When are you free?”  Valid questions – for the pre-cancer Nicki – little miss butterfly whose schedule was jam packed with dinners and parties and wine nights.  Nowadays I can only tell people to call me and if I’m awake, I’ll answer. I can’t make plans.  I can’t commit to even a coffee date.  It always depends on how violently the side effects are kicking my ass that particular day.  Don’t get me wrong – It’s not always so taxing – some days are better than others.  I just never know.

So ask me – How are you feeling? Nine times out of ten I will tell you I am great.  Five by five. Dandy and spiffy and excellent! But every now and then you will get me at one of my low points and I will tell you that I feel wretched – that my body hurts – that I am sick as f#@& and I need a nap or a lobotomy or something.  I am not saying this to play poor-me or to seek out your sympathy. I don’t want anyone to feel sorry for me – or to feel helpless, as I know is common when someone you love is suffering (MOM! xo).  When I tell you I am fine – I am not lying.  Emotionally, I don’t think I have ever felt stronger.  I am merely trying to allow people to understand that physically, I am a little less than ideal these days.  I am hoping to effectively illustrate the naked truth about life for a chemo patient – without all the sugar and glitter and rainbows that I usually throw in. 

If you have someone in your life who is dealing with this wretched beast called chemotherapy, please don’t stop asking.  In fact – ask more questions.  Then they can tell you what’s really going on.  I think this might apply to anyone (everyone?) who is suffering – not just chemo patients.  Doesn't everybody ultimately want to be understood after all?  Even when I can’t answer your questions honestly, it still means so much to be asked – to be cared about.  Just know that generally a chemo patient always feels sick in one way or another – less than par – not quite themselves.  We just don’t know how to tell you that without making things weird.  But thank you – I mean it - thank you - for asking.