Monday, September 20, 2010

How. Do. You. Feel.

(commence Geek Flag)

Remember that scene in, oh, Star Trek MCMVLXII or something, where Spock's come back from the dead on the Genesis planet, and he's doing this sort of rehabby thing on the Enterprise, and his mom slips a ringer into the computerized questions that are supposed to be judging his fitness?

And the computer says, flatly, "How. Do. You. Feel."

Spock looks quizzical and says the Vulcan equivalent of "Whut?" And the computer repeats "How. Do. You. Feel."

(end Geek Flag)

That's a hell of a question. Everybody's asking it, and it's so difficult to answer. Some people ask how I am both mentally and physically, and that's a little easier, but it's still tricky. Catch me during a good hour and I'm all "Dood, fine, nothing to see here, move along." Catch me fifteen minutes later and I might be a hysterically weeping wreck.

Which is all fine and normal, but it's really exhausting and inconvenient and it's pissing me off.

Physically? Simple: my throat hurts, the side of my face hurts sometimes, and I'm vaguely nauseated all the time, just from stress. The op site is healing well, and the stitches still feel like I've got a hair on the back of my tongue, especially when I drink something cold and they stiffen up. I sleep okay.

Emotionally? Like I said before, it depends on the moment.

I woke up this morning feeling incredibly peaceful and happy and grateful for everybody in the meat world and on the Innerwebs. Went to the doctor, had a good meeting with him, got the appointment with Dr. C, the oral surgeon at Consolidated Research and Education (operating at Sunnydale, thank God) all set up, got my scrips for MRI and CT and yadda yadda and the path report and everything. Shook his hand, told him I'd let him know how things go, and bopped out of the parking lot to Bachman Turner Overdrive.

Got back to Littleton and ran some errands. Managed not to get annoyed by the slowness of the grocery store clerk, got to Home Despot, picked up a big bucket for Max to drink out of, and bopped out of the parking lot to some indie song I'd not heard before.

And, totally without warning, at a stop light, started quiet tears at the thought of how lonely all of this is going to be. I cried the rest of the way home, had lunch, and took a nap. And now I'm fine. Not hungry, not particularly interested in eating, though I know I have to because I need Lortab.

I'll be all "Research ALL the things!" and get all ready, typing fingers poised, and then....I can't. I want somebody else to do this for me, to digest whether radiation is a good idea or not in the absence of cervical lymph node involvement. I want somebody else to crunch numbers on survival rates. I want somebody else to do all this for me and present me with a set of decisions that I can trust.

I get very excited over something simple, like laying out the rock-and-sand extension to the porch, and then this wave of exhaustion just rolls over me.

This is all normal. I know that, intellectually, but it's still hard to handle. The last three days have felt like sixteen years--sixteen *long* years--and I don't see that anything is going to smooth out any time soon.

Which is going to be important to remember in the future. I mean, yeah, I have cancer (and Imma flush its head six or eight or twenty-nine times in a junior high toilet, as I told Beloved Sis), but I'm not facing things like horrible bodily disfigurement or the loss of a secondary sex characteristic. In a lot of ways, because I *look* fine and mostly *feel* fine, other people are seeing this as a pain in the ass.

Which it is. It's also veers wildly between horrible terrifying monster and minor concern.

Imagine how much worse people with, say, laryngeal cancer must feel. Imagine how hard it would be to articulate your fears when you have no voice left. Imagine being the woman in a shaky marriage, or the man who's freshly divorced, who finds out she or he has breast, or prostate, or advanced cervical cancer: something that affects not only your body, but also your sense of yourself as a sexual, physical being and how you function.

I always wondered why people just coming out of surgery were so damn stable emotionally. I think now it's because you see the surgery as the worst thing that's going to happen to you: after they're done cutting on your ass, you can move along with scars and without the fear of the surgery itself. Even if that's not true, it's still a huge hurdle you've overcome, right?

We learn all this in school. Then we learn it again when we start dealing with patients. *Then*, if we're a statistic--and somebody's gotta be a statistic--we learn it a third time, first hand, and have to remember it for later.

How do you feel?

Hell of a question. Give me six or eight days of total oblivion and I'll try to answer that for you, okay?

13 comments:

Penny said...

I know how *I* feel. And I know I would take on how you feel if I could take it and put it on my shoulders and take it off yours. And I know I am not even remotely the only person who feels this way.

That all amounts to a whole lotta nothing, since there isn't a friggin' thing to ease how you feel, but...I wish I could.

messymimi said...

It is normal to not know how you feel, and it is one of those silly questions along the lines of "How does it feel to be 7?"

A better question is, "What can I do for you at this moment?" Since I am not there, I know the answer, and will continue to pray.

Celeste said...

Cancer's a horrible mindfuck of a disease. There is no way we can do anything BUT go off in all directions when it happens to us.

Some cancers are worse on the outside, some are worse on the inside. Considering that all of our bodily real estate is valuable, it's a Sophie's choice to try and decide which might be the "better" one to have.

I am just really glad you are open to sharing this on your blog, Jo. I'm new here but frankly, I'm happy to be whatever small piece of support I can be. Even if it's just a measly little comment to read some night when you can't sleep, so maybe you'll know somebody's thinking of you. That I can do. Sure wish it was more, though.

Anonymous said...

If my wiring goes haywire or my plumbing needs plumbed, I do not google the fix. I call the electrician or the plumber.

As a nurse, it is just hard for me to say "trust your doctors" because we are genetically unable to trust most doctors, have spent a fair amount of our professional life keeping them out of trouble.

All that being said (don't you hate that phrase?), I am older, wiser, more experienced than you, probably was taking care of my first patients before you were born.

We are our own worst enemies when we get sick. We know how bad things can get, have seen those 1:100,000 things happen, know how very unpretty it can be. We know way more than we need to, just enough to be very dangerous.

So my dear friend whom I have only just met in the past few months, trust your doctors, ok? I know you have already checked them out, had a look at their credentials, know there M&M rates. And I know you made the best possible choice for a person to manage your care thru this deviation in the road of life.

You are going to feel how you feel, and that will change on a moment to moment basis. It is ok. You have to be where you are. You can't be six when you are three. Life doesn't work that way.

Accept those offers of help that are helpful, say no to the rest.

Don't try to know all there is to know about what is happening going to happen might happen might not happen because you can't.

And don't make me get out of this chair and put the cord on your computer, disable all search engines and throw away all the books and articles.

For just this once in your adult life, allow people with the skills to take care of you do their job.

And feel free to scream and cry and regret and be mad. We understand. I understand.

I want to help and support you and be your friend, and that line just went around the corner a dozen times.

Nurse Ann

Rebekah said...

Yo -

I feel EXACTLY how Penny feels...that's how *I* feel. Trust your inner strength, because it IS there.

And I love reading the responses...it teaches me how to be a better friend.

PS: I have asked many of my friends to keep you in their thoughts/prayers, so you have even MORE total strangers pulling for you...just wanted you to know that! Candles are being lit, and healing thoughts are bombarding The Universe on your behalf.

-Bek

Penny said...

This just in: I LOVE NURSE ANN.

Gretchen said...

So, just out of curiosity, I looked up PLGA. And don't worry, I'm not going to tell you anything scary or useful or anything. I just especially liked the definition that claimed this tumor is "indolent." Lazy. Slothful. Hell, you can beat an indolent tumor - it's not even trying! Really hated to hear that it's cancer, and I'm sincerely wishing you all the best.

Jo said...

@Ann: thank you! I dare not do anything which will cause you to come kick my butt and unplug my Mini.

@Gretchen: isn't it nice to have a tumor that matches my personality?

bdaiss said...

I'll just add... what they said. Because those comments above are spot on.

And an ear worm for you:
http://www.youtube.com/watch?v=GFcpxTOm0PQ&p=71E4E0C453F75E1D&playnext=1&index=1

We're here for you, in whatever way we can be.

Suzanne B. said...

So now I know that I'm officially a 'lurker", having read your blog for months and not commenting until this unexpected event. Although I don't know you, I expect that the very traits you exhibit in your writing are the ones that will guide you through this with a unique Jo-ness. Strength, wonder and an appreciation of the beauty and good in your life. Plus a heaping dose of humor, of course.
PS: Nurse Ann is a wise woman.

Lurkette said...

You're sounding good!

(I tried to contact you through the link, but I might not have done it right. I'll do it again, now.)

Hugs and good stuff from Jerusalem.

shrimplate said...

Please don't feel lonely, Jo. We love you.

Nurse Bear said...

*geeklove* I know exactly the 'How. Do. You. Feel.' reference of whence you speak. And i totally have moments when it echoes in my head.

<3 <3 <3

/random comment is random