Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts

Saturday, August 27, 2011

WTF

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;

WTF


  • 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.










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.