Look At Me

"You just wouldn't know it to look at you",  clucked Nurse Lovely as she drew my blood and I was explaining the excruciating pain I was experiencing in my left arm and shoulder area. Pain so strong it had awoken me from my sleep several times that week.

I've heard this expression many times, and I'm never quite sure how to respond.  The thing is, pain is for the most part invisible, until it causes our facial features to contort, and our eyes and bodies to grow weary with exhaustion.

My friend Being Sarah, author and fellow blogger sums it up perfectly in her book of the same name, Being Sarah;

"Breast cancer can be like this, you don't look ill, but you feel maimed and emotionally depleted."

Actually,  I'm quite sure this is true for most cancers and other debilitating illnesses.

But I'm definitely feeling maimed and rather emotionally depleted right now.  I do seem to be caught in that never-ending cycle of one-thing-after-another. For the first time,  since my magical train journey through pink lollypop land began way back in 2004, I've begun to experience side effects from the cancer that resides uninvited in my body.

Up until now, most of my ailments and other physical complaints, have been (in)directly attributable to treatment. Surgeries, radiation, chemotherapy have all brought with them a wonderfully diverse and at times surprising cornucopia of side effects. And generally I've been able to take medication or adjust treatment to combat these side effects, be it pain, nausea, vomiting, fatigue, neuropathy, gastrointestinal upsets, hair loss, low blood cell counts and associated conditions, weight gain, weight loss, allergic reactions, unidentified-but likely-battered-immune-system-induced-afflictions, mood swings, hot flashes, night sweats, etc.  You name it I've probably had it and I've dealt with it one way or another.

Unless we're talking about hair loss, I doubt anybody would know to look at me that I was experiencing any of these side effects. Unless I tell them.

But now I find myself in a different pickle. The cancer has determined to stealthily work on robbing me of the use of my left (and dominant) arm.  Symptoms have been very slowly appearing over the last few months, but have started to escalate recently, defying the logic of my last scans which showed my disease to be stable.  Exactly how the cancer is accomplishing this theft of a much loved limb, is a hotly debated mystery soon, we hope,  to be unveiled by the wonders of high resolution MRI technology.  (Please no armchair diagnoses here, thanks!)

I can still use the arm, but now only in a quite limited capacity.

Tingling finger and arm nerves.

Numbness that is slowly taking over my hand. One thumb and two fingers now offline.  And half an arm.

Depleted strength and an almost atrophied set of upper left arm muscles.

Upper back muscles constantly firing and twisting themselves into knots.

Constant nerve pain running down the entire length of my arm.

Frequently interrupted sleep and pacing the house until painkillers kick in to coax me back to sleep.

Daily tasks now requiring assistance, adaptation, or not performed at all. So far the list includes cutting things, like the pork chop in the restaurant the other night, fastening the straps on my favorite sandals, handwriting, toothbrushing, eating with a fork or chopsticks, driving, lifting my dog, grocery shopping, laundry and so on. Things are starting to slip. Many of the day to day activities that I used to enjoy, are now tarnished by this pain and loss of strength and dexterity, and I can feel the slow decline of function with every passing day.

Luckily,  I have a good support system when it comes to third party assistance. But I hate to ask. It makes me frustrated and angry. Why do I need to ask my beloved to cut up my steak, like a small child? Why do I need to ask my nearly-senior-citizen-bless-her-heart- mother-in-law to help me with household chores? Shouldn't it be the other way around? This seems to be against life's natural order.

But the loss I am feeling the most keenly right now, is my inability to type with both hands, and sit at the computer for any length of time. This only aggravates my pain level. But I'm a full-time blogger, I regularly tell my doctors. How can I blog with this pain? How can I blog if I lose the use of my arm? How will I cope?

And so, I find myself exploring different ways of coping, read blogging.  One-handed on an iPad seated in a comfortable chair (working pretty well I would say), voice recognition software (not so much), video blogging (maybe!).  Trying hard to concentrate under the fog of medication, the ever present chemobrain and constant nagging pain. Wondering if we can identify the source of the pain and treat it with a palliative dose of radiation, or something.

It's getting more difficult, and I'm definitely slower and I DO need some assistance.  I'm certainly grumpier, frustrated, scared, and in pain, but you wouldn't know it to look at me.

A Funny Thing Happened on The Way To The Forum.......

A funny thing happened on the way to the chemo forum yesterday.  I was at my doctors office, waiting in the chemo check-in line,  which is slightly less tedious than the airport check-in line but with over sized emotional baggage and without the promise of an exciting destination at the end of it.  Suddenly this elderly woman sidles up to me and whispers in my ear,  "You look like a model", and then turns around and prances off down the hallway.

I barely had time to smile to myself and think, wow, I guess I must look good today.  Now rather than just take the compliment for what it was and enjoy it I just had to start over thinking it.  

First of all I could never be a model.  1. I eat food and especially enjoy carbohydrates.  2. I am wavering on double digit size clothes and by this I don't mean size 00. 3. I'm about twenty five years too late chronologically, a double chin and two ridiculous fake boobs to boot. 4. I don't get out of bed for less than the promise of three square meals and snacks in between.  And 5.  Do I really want to add an eating disorder and body dysmorphia to the already quite long list of medical issues ?  Nope, I don't think so.

Then I sat down in the waiting room and looked around me.  Most of the people that I see in my oncologists office  are quite elderly, quite frail-looking, bald and obviously very sick.  And then here's me waltzing in with a full head of hair (thank you chemo-gods), forty years old, and I guess compared to what they're going through looking pretty darn good.  In fact, I think I could probably pass for someones caregiver truth be told.

It's funny though, years ago I had an interesting conversation with a friend of mine who happens to be African-American.  I can't remember exactly what we were talking about, but he described what it was like walking into a roomful of people and being the only dark face in the room.  Even though he knew that no one was against him in any way, he just always felt people did a double take when they saw him, which always made him feel a bit weird.   I actually argued this with him and said it couldn't be and that maybe it was he who just felt self-conscious.  

Now six or so years ago in my first round of treatment I lost all of my hair.  I wasn't one for wearing wigs preferring the headscarf route which I always thought looked pretty good.  But what you see in the mirror isn't necessarily what other people see and I suppose you just get used to the way you look and don't really think about it in the security of your home.  One day I boarded a crowded subway train, took my seat, and suddenly got an overwhelming sense that everyone was staring at me.  I looked up and actually caught a couple of people staring directly at me with a look I can only describe as questioning pity.  I must have looked bad that day I guess and I suppose my cancer patient chic' head wear wasn't fooling anybody on that train.   I suddenly understood the feeling that my friend had described all those years ago.  It was weird and quite unsettling I can tell you.

So I suppose to some extent that's what going on now whenever I go to my doctors office.  Except now it's in reverse.  I walk into that room and still look like the odd person out, but this time it's because I  look pretty normal and I guess pretty healthy.  But then they see the yellow patient wrist band and the hideous IV port coming out of my chest, and they know that I am one of them, but one who is fortunate enough to pass incognito most days.

It's the small mercies and little moments like this where I remind myself, that no matter how bad I feel physically or emotionally, there's always someone else who feels a hell of lot worse, and would give their eye teeth to be in my shoes.