November 2, 2012 · 2 comments

As humans, we tend to acclimate to things we never guess we would. Things like tragedy, grief, disease all become things that we almost take for granted in our every day lives.  While things are so very personal to us, others tend to move on far before we do when something affects us directly.

I try to keep that in mind; to be aware that while something isn’t affecting me directly, other people are very likely putting on a brave face and suffering underneath. Grief is a sneaky bitch for instance, and bad things happen to good people every day. I try to remind myself of that and be compassionate – I think it’s all we can expect of ourselves and each other. Kindness. Compassion. Love.

I’m not writing to elicit sympathy or comments or anything of that nature. I hate to complain about my aches and pains from my meds – so many have it so much worse than I do, and my latest results were very good.

But the fact of the matter is that I am I still fighting this cancer. Maybe my chicken skin has eased up and I don’t look as exhausted or pale as I did a couple of months ago. Maybe I’m not limping or walking gingerly like I was when my joints were totally inflamed. Maybe I eat better and can actually drink water again, but the side effects are still around.

If you asked – and really wanted to know, I would tell you that my being on the Z, even on the reduced dose (and potentially also from the Ipi) is causing sensitive joints and skin, that fatigue still smacks me in the face randomly, that the ocean in my head and the lumps I keep finding on my neck and the pimple-like bumps on my forehead are very troublesome to me. That my watery and red eye that causes pain behind my eye sucks.  That the swelling in my leg, while not unusual, bothers me and my feet feel strange in that I can’t tell if my toes feel numb-ish or if it’s just the swelling and lack of lymph nodes on that side.

If you’ve never experienced joint pain or skin so sensitive to little touches (or hard smacks on things/dog stepping on you) that feel knife sharp, I imagine when I wince, you wouldn’t really be too concerned.  And I understand that. It’s tiring thinking about cancer all the time. It’s downright exhausting wondering if each little thing is a side effect of Z or of Ipi or just in my head. On top of that, I don’t expect you to think about all of that stuff.

On the other hand, please don’t forget about me and what I’m going through. Just because I’m not on the highest dose of my meds doesn’t mean I don’t have side effects. When I say I have aches and pains, I’m not just whining. When I say I’m tired, what I really mean is that I am bone tired, straight up fatigued, not just feeling lazy.

And when I say I’m doing well or that I’m fine or that I’m good, what I really mean is that I am doing ok but that I am still fighting cancer and still living with side effects and aches and pains but that I can’t bear to burden you with that every single time we chat. 

Just remember that life is hard and everyone deserves compassion and hope and empathy.

** By the way, please make sure that you give whatever you can to the Red Cross or other disaster relief funds to help the people on the East Coast as they recover and heal from hurricane Sandy**

{ 2 comments… read them below or add one }

Mom II November 3, 2012 at 7:22 pm

Don’t ever apologize for sharing what you’re going through – it gives us a chance to share it with you and understand what you’re really experiencing and even, perhaps, make it a little easier. So when we ask, tell us – you won’t be a burden, bore, or pain in the a… neck. Love you and want to be there with and for you in every way!


Mom November 6, 2012 at 4:42 pm

I will never forget what you are going through. When I ask and you say “ok” I want to question you further, but i don’t because I’m not sure you want to talk about it. You have somehow made lemonade out of this lemon in your life – smiling and keeping your spirits up. Know that you won’t be burdening me if you share how you really are feeling. Sometimes it is good to talk about it, cry, hit something, stamp your feet or whatever will help to release that pent up frustration. I love you and if I could, I would take it away forever.


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