Saturday, August 27, 2011


I'm sitting here listening to the latest news of Hurricane Irene.

Thing is though it seems like we've already visited the eye of the perfect storm earlier this week. And an earthquake! Seriously!

After a disastrous trip to Colorado that we had to cut short and come home, I woke up last Saturday with a newly droopy left eye. This, along with escalating pain and decreasing function to my left arm which I've chronicled here before. After calling the doctor and trying various pain killing medications, the decision was made to admit me to hospital in an effort to control the pain and try and investigate the sources further.

Oh and I should also mention too, that by Wednesday morning I woke up to find my left hand was now almost completely paralyzed. Essentially a piece of meat. So this is on my mind as well.

After being subjected to a battery of tests, the doctors concluded that these latest issues have come about through new skin metastasis and infiltration of the nerve line controlling my left eye and arm. No mass to speak of, but a shadowy specter moving across important nerve lines is what it looks like on the scans. A "coating" of the nerves if you will. Hands up who knew breast cancer could do this?

So I've now changed chemotherapy regimens and am undergoing an emergency course of radiation to at least try and reverse some of the nerve damage to the hand, in the vain hope that I might be able to regain some function beyond what is essentially a fairly useless lobster claw at the moment.

To be honest, I'm just feeling very tired and a bit overwhelmed right now. What does this all mean going forward? How do I cope with the complete loss of the hand? How will I make dinner, something I love to do, amongst other things. How will I ever wear another article of clothing that's not an elasticated waist, or doesn't have buttons? I know I'm not the first person this has ever happened to and who deal with much worse, but still, it just seems like a lot to have to think about and I can't quite get my head around it.

I don't really know what to say at this point. As a friend quipped this week my life seems to be reading like a bad movie script. New mets, chemo, hospital, earthquake, radiation, paralysis, hurricane; did I miss anything? Locust plague, Armageddon?

But in the spirit of my usual rants, here are some assorted Why/What The F$cks that stayed with me after this week's escapades;


  • If I'm in hospital with an accessed port hanging out of my chest, WTF is a nursing assistant rooting around in my arm for a vein to draw blood from me at 4am in the morning? And why am I arguing with her?

  • Ditto for my MRI tests. WTF was no one available to access my port to inject the MRI contrast?

  • When I'm whacked out on pain medication it's very difficult to have a serious consultation with a specialist doctor. Also don't be surprised if I insult your work. I'm off my face! WTF?

  • Pain medication causes severe constipation. WTF is it so hard in the hospital to get anything representing one of the main food groups and anything that might resemble food fiber? Shouldn't a nutritionist on the oncology ward be making some automatic decisions for you about food choices, since you're so whacked out you barely know your own name, let alone think about whether you should eat broccoli or spinach. But I do want to point out that the hospitals Dunkin' Donuts was open 24hrs! That's good because I needed a jelly donut!

  • When I got home, all I could think was that I didn't have enough clean underwear to last me through the hurricane. WTF am I worrying about this, my beloved asked me? I don't know I just am! Note to laundry gods aka Mother in Law. Thank you for curing that little WTF!

  • When doctors say that chemotherapy is "well tolerated", particularly in the metastatic setting, WTF does this really mean? That you might be able to get out of bed if you're lucky? That it won't necessarily kill you? What does survival with metastatic breast cancer really mean anyway?  Seems like the same issue's on The Assertive Cancer Patient's mind as well this weekend....

  • If we're serious about downgrading breast cancer to a "chronic" disease, then WTF aren't we pulling out all stops to understand and treat metastatic breast cancer. Because this is the one that really F$cks you up, and then likely kills you.  

Hurricane indeed. Yawn.

P.S. Just in case this post isn't clear, I'm now at home and resting comfortably.  Latest crisis being dealt with.


  1. Oh no.....
    I dont know what to say.Except oh no !!!!
    I hate to hear that you've been in such pain and dealing with even more.You are going thru so much.
    I just want to send you hugs
    I am glad you are back home
    Is the pain more under control now?

  2. Hi Rach
    Sorry to hear about your hand--no, I didn't no BC could do that. That really sucks. Hang in there.

  3. Rach I don't know what to say either except that I am so sorry you are having to go through all this. I'm not a church person but I am praying that they can reverse some of the nerve damage. You have every right to feel overwhelmed. And yet in spite of everything you report on this experience so clearly it just takes my breath away. You are one hell of a writer. I'm sending you the biggest hug I can muster.

  4. WTF... I want to type the word out but I won't. Instead, just know you have a new friend just north of you waiting for Irene to "bring it." But, I am screaming on the top of my lungs in anger at what you are going through. Lots and lots of really not nice words. This does suck. And no, I had no idea BC could do stuff like this..... xoxo AnneMarie

  5. You, my dear, are the toughest tough chick I know.

    Love and love,


  6. I ache for you Rachel. I feel so helpless and really want to be there for you. I do pray for you and if thoughts could be felt, I have you in my mind and heart daily. I wished I lived closer so you could just use me as a sounding board through all of this frustration and fear. Love and big bear hugs for you. Gail

  7. What can I say except that I do know what you are going through. The only difference is that it is my right arm/hand that hangs limply like a lump of led. I now deal with a fungating clavicular tumour, possibly as a result of over radiating the region when treating my recurrence in the brachial plexus. WTF... why cannot modern medicine find a way to treat us, leaving us with our dignity. My Palliative Care team recommended Movicol to treat the constipation from large doses of Opiates. It works well.
    I had no idea that cancer could be this cruel. I am so very sorry to hear of your pain and suffering. May you find a treatment that will allow you to 'reclaim' your life.

  8. Sorry is just not good enough a word.. Damned P***** off. You are such a lovely woman and so determined to get on no matter what. xxx

  9. Chez is so right about cancer being cruel. We all fear mets and what they will do to us. I won't know unless I get there, but I think I'd be inclined to say "Just take me, Lord! Don't torture me like this." Your strength and humor inspires me more than you know.


  10. oh my dear dear friend, so sad by reading these lines, you are always, even in pain, such a great inspiration! (((hugs)))

  11. Well, damn! This news totally sucks! BC is an evil b*tch indeed. And when I read about your skin mets, I said WTF?!? out loud. Sometimes, I wish BC was a real, live person - just so I could choke the sh*t out of her.

    So sorry you have to deal with this. The hurricane, earthquake and running out of undies not-with-standing (I experienced all three in the last few days as well), you hospital trip, pain and new dx are enough to make this a strong contender for the worst. Week. Ever.


  12. Oh my gosh, Rachel. I am so sorry you are suffering. Cancer is cruel indeed. I didn't know cancer could do that either.

    Your WTF list really is apropos. A lot of hospital staff don't know what they are doing.

    Sending hugs and love your way...


  13. Rachel,
    The only thing in the world that's important to me right now is you; your comfort in mind and body. I wish I knew how to cope with the loss that's ebbed into your life in the last few months. I hate it; absolutely hate it. The only fact of which I am certain is the dedicated legion of friends and survivors throughout real life, and social media life who have you front and center in thought and prayer.

    Irene is over; she weakened and passed on. Let's pass through this crap for you, too.

    Your list of comments to the medical community is priceless. I'm going to quote you on those.

    with love,

  14. Rachel--I saw your comment on my blog and jumped over here to read this.

    Argh! Double argh! And WTF indeed!

    I will e-mail you first thing in the morning, because it is after midnight already, but let's talk about all of this, OK?

    I've had periods like this where the hits just kept on coming (hits with a two-by-four to my head was what it felt like) ... not exactly the same as your string of WTFs, but close.

    Glad you're home. Glad you're hanging in there (at least well enough to write a post that is both angry and funny). And I hope I can help.

    Love you, girl,


  15. WTF, indeed. The Head Script Writer must have ingested hallucinogenic substances before writing this one. And I've never heard of skin mets like this. I always knew you were special, Rach, but your life this week has achieved a level of uniqueness that is biblical in its proportions.

    Large Sigh.

    The fact that you could even produce this post is a testament to your remarkable & enduring feisty-ness. Although surely you could not let such incredible raw material go to waste...especially, perhaps, the depths of medical stupidity you described. Let's hear it for your MIL, though, who understands the deeply therapeutic properties of clean undies!

    Hugs, pie, cowbells & crumpets, my friend. Sending all of them, plus lots of love,


  16. Rach, they ran out of space on the all those pink t-shirts to run a list of breast cancer truths - about really what breast cancer does to you and your life. Paralysed arms and hands, wrecked lives, too much time in hospital and on and on..... See it didn't look good with the triumphal cries. Sheesh. Hope this week's a better week.
    Love, Sarah


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