Tuesday, October 25, 2011

And the Month Drags On...

I don't watch TV, so I am spared most of the crap commercials about pink ribbon products assuaging pink guilt. I'm spared reporting on the Walks and the Runs full of decked out revelers who apparently thought breast cancer was a Mardi Gras event, but wound up wearing all pink.

I marvel at the fabulous writers out there this year, putting the real information on the table; Sarah, Rachel, Gayle, Nancy (to mention just a few) and feel that the cause of realistic honesty is in good hands as I try to share and paste it around Facebook. And yet, when it comes to sharing anything face to face, when it comes to trying to educate anyone in my own circle, not even about the big picture, but just about my little corner of it, I feel inadequate, marginally successful and tired. I do not make a very good activist, as I am wiped out by tired and cranky when the month is only 3/4 over.

I go to bed with swollen, itchy, prickly feet and ankles. I awake 5 or 6 hrs later to very little improvement. I wake up at 4 to use the restroom, then can't seem to go back to sleep. Though I am tired, because of my feet and ankles, because of the crossword game I played on my phone before falling asleep, which is now encouraging my brain to try to arrange words in a lattice even though the game is turned off, because of the damn cat who follows me back in my room and begins to cry at me for some ridiculously selfish reason, whom I must then get up and chase out of the room with a pillow, scaring the non-offending cat in the process and suddenly the bed no longer feels comfy and welcoming, I am up and at the computer at 5 am. That may be familiar to some people. It's not comfortable for me.

It's also not any cooler outside, even at this hour, than it is in my house. The weather here in the Phoenix Valley this October has left me CRANKY. Waking at 5 is a much different prospect if one can throw open the windows and doors and enjoy a cool, if not nippy, breeze. Waking at 5 to a day that will likely reach the 90's and the living room feeling stuffy just leaves me feeling scritchy around the edges. And cranky.

Between the pinkness and the lack of Autumn-ness, this October has left me feeling CRANKY. What can be said about cranky? I am ticked off when climbing back in bed in the pre-dawn hours is fruitless. I feel pointless when I hope others will understand the difference between side-effects and laziness. I am let down when I open the door in the dark and I am not hit by a chilly breeze. I'd settle for cooler than indoors even.

To add insult, the A/C just kicked on.

In the dead of summer, the A/C feels cool and refreshing. In October, it feels mocking and artificial.

Oncologist visit coming up in a little over a week. I should call and ask to do my blood work ahead of time. (I usually do it day of, and then call for results after, but with my CEA on the rise and my unhappiness with being back on Femara, a trip in before my appointment seems prudent.) Femara's side effects are not being "well-tolerated" by me this time around. Maybe my fault for the break to try Aromasin, but the pain and swelling are more than I am willing to live with right now. I'm not willing to try walking gingerly on feet that feel like I just walked a 1/2 marathon (1/4 marathon: let's not exaggerate my abilities here, present or past) when all I've done are a few simple chores and a couple of errands. I guess that makes me a bad candidate for Xeloda, which I'm sure is in the bull pen, warming up, just waiting for its shot at me. I'm sure I'll end up being offered it, when the hormonals all fail. I don't know if I could take it. As much as my feet bother me now, I fear that Xeloda would reduce my mobility to trips to the restroom.

I know it's probably time for a scan. That's not in the budget until January and Medicare. I'm sure the doctor will understand, unless one of the tumor marker numbers has shot up like a three-yr-old singing "Jesus wants me for a sun-BEAM", in which case he'll have to be unhappy with me for two months.

Still not light out, and the temp, which is not bad, though I gripe, will only continue to rise from here throughout the day, so opening that door again, hoping for a waft of fall to hit me in the face and make me feel good about being up this early would just be an exercise in futility.

Kind of like trying to educate those closest to me about my illness that shows no outward signs and for which my treatment is not yet toxic. Ironic that I must get sicker for them to begin to understand.

Maybe a cold shower will make the morning crisper...if not my mood.


Anonymous said...

How DO you write with such clarity so early in the morning! SunBeams coming my way from the sweaty halls of AZ - thank you so much. I nod and chuckle and roll my eyes through out your post - assured that you are still with me. Thanks for writing - beautifully said!

nancyspoint said...

Well sometimes cranky is the only reasonable mood to be in. Don't be too tough on yourself. Feel what you need to feel. Guess it's a lot cooler in my neck of the woods. Thanks for you honesty and thanks for the mention too! I appreciate it more than I can say.

CancerCultureChronicles said...

I think you have good reason to be CRANKY!!!! In fact, that's probably an understatement, yes? I must admit I do like the fall here in NJ, but the thought of Old Man Winter about to descend is making me cranky. Let's just be cranky together Shelli ;)

Carrie said...

I could have written this! Your crankiness is so familiar. Today I am struggling with the social isolation (again) that makes me feel like everyone's life is moving on except for mine.

katie ford hall said...

Yep. You be cranky. We'll be here for you.


Marlene said...

Like Carrie said I too could have written this. Crankiness is without question the one undeniable side effect of living with MBC and it's a chronic condition for me these days!

Treatment changes are soooo difficult - trading up from what you know to what you don't. Just FYI - I've been on Xeloda for 22 months and after sorting out side effects for the 1st 2-3 rounds it has been very effective for me although like you my TM's are on the rise - again.

So go ahead - be as cranky as you need to!