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.