Monday, July 25, 2011

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.


  1. Oh Rachel, I wish there was something I could do or say to help. For what it's worth, you are an amazing writer and you're helping us understand what this must feel like.

  2. Rachel, I hope you feel better soon. Take it easy, Elaine

  3. Rachel, exactly my feelings and thoughts on what Jackie said. Feel better! Suzzann~

  4. Pain just sucks...I am sorry you are experiencing this.

  5. I'm so sorry Rachel. Gentle hugs from the midwest and I hope you find some solutions soon.

    (don't care what you "look" like, even though you look fabulous. I just want you to feel well.)


  6. oh rachel.

    i wish i had a magic wand to make it go away. it moves me to know that you must have been in pain writing this post. i am grateful to you for sharing your experiences, despite these challenges.

  7. Before I had cancer, I was run down by a taxi & had a spinal injury (neck, c 5-6). Over a year I was in constant, but changing pain, and slowly lost function of my arm/hand in spite of all my therapy efforts. I continued to do as much of my life as I could, determined to live as normal a life as was possible. People would see me out & assume all was fine. When I look at pictures from then, I see the pain on my face - but no one else did.

    I know the frustration of needing help with the simple things. OMG, how annoying to have to have someone else cut the steak!! I got pretty good at trying to hide it. I'm a professional musician (& now fitness trainer working w/ other cancer survivors), play viola. I used to pretend to have something in my eye during chamber music concerts to cover while I spasmed & couldn't lift my arm.

    And even more frustrating was trying to make docs understand that, although they might consider what I normally do in my life unusual (rock climbing, chopping wood, doing pushups..., & playing viola), it was what I expected to do. My level of disability might not be dramatic for someone who sits on the couch most of the day, it was devastating for me! (luckily, I finally had a very successful surgery - then came cancer...)

    I wish you the very best in dealing with this. One-handed typing does get easier & can be a great solution if it makes it possible to still blog! I like your idea about using video. I know it's super frustrating, but it's worth it if it can keep you writing (or talking). I hope you figure out a good way to keep your voice out there. You're creating something good that needs to be said.

  8. Oh, Rachel, this makes me want to cry and scream at the same time. I hate that you have so much pain. I hate that you have to ask for help and don't like doing so, but remember the people you are asking love you and want to help. I wish I had some words of wisdom to offer, but all I can offer is love, friendship and all the support that can make its way to you through cyberspace. Hope you come up with something that helps and soon. Hugs.

  9. Rachel, this sucks. I know you're hanging in the best you can, so I won't tell you to and I so hope the MRI sheds some light on this. We're here with you, my blogging friend.

  10. Ah Rach.... what can I say. Words feel useless. Cancer's just crap, more crap and then a pile more. I feel for you so much and I'm too far away here.

  11. I echo the sisters' sentiment and virtual hugs. Your commentary, analyses, advocacy, and honesty have been such an inspiration to me. Your voice is strong, and I really hope this cancer will give you a f!@#$%^ break!

  12. Rach, my first thought was what Lani said -- I wish I had a working magic wand. I feel this on so many levels -- as your friend and Sherpa, as a sistah with my own lovely side effects of cancer treatment, as a PT who tries mightily to help my patients overcome pain and disability, and as another writer and blogger who values your amazing intelligence and insight here in the blogosphere. Like Nancy said, I feel so frustrated and angry and helpless right now, I want to cry. Gosh darnit, all I can say is that I type really, really fast, so maybe we can work out some kind of dictaphone deal!!

    Gentle hugs, love, massages, everything.

  13. *sob* I'm so sorry for everything you are going through. I've added you to my prayer list. So much of your descriptions are exactly what my husband and I each experience with our own "invisible" pain conditions. We know how you look and feel... because we look and feel the same way. Our hearts are with you, my dear. God love you, child. ♥

  14. Rachel, This disease is surely sent from Hell. Like everyone else, I feel so helpless to know what to say, much less help you, other than I've said a prayer for you. Your voice is so powerful for all of us, and we send you love and support. XOXOXO, Brenda

  15. I just wanted to send some moral support, and to thank you for your honesty and vulnerability in sharing all of this with us.

  16. Rachel, this is so hard...I'm grieving right along with you. I'm still waiting for tests to see what my chest pain is about. The waiting and the wondering just seem to come with the diagnosis, don't they? I wish I could say something that would make it all go away. Like Brenda, I am praying for you. XOXOXO, Jan

  17. Hugs to you and prayers this passes soon.

  18. Dear Rachel,
    You are in my daily thoughts and prayers. You are so special;and are working so hard to be honest and help your fellow BCers. You are a great writer. I pray that this ugly disease will stop in it's ugly track and release your Pain. Help is hard to ask for, but your family probably feel helpless with what you are going through. The love and help they can give you makes them feel better. I was a caregiver most of my married life, but wouldn't change it although I could have used more help. Love will get you through. Love, Gail

  19. Hi Rachel,

    Hang in there. Your words are inspiring and touching to all of us, with or without disease. Keep up your fight in all you daily heroic activities.


  20. Rachel,

    Thank you for taking the time to articulate your pain, to clarify for others how easy it is to miss (or ignore) what you're really feeling. And thank you for reminding all of us that we can't truly know what anyone else is experiencing. Sending warmth and strength your way.



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