Thursday, December 31, 2009

Subscribe to CG, today!

Are you sick of having to check the site for updates? Want them to go straight to your inbox? Well, now you can! CLICK HERE to subscribe and receive CG in your email inbox whenever a new post goes up!

Bonuses to Subscribe:
Previously stated: No checkie the site, no wastie your times.

Not yet stated: Read everything I post -- even stuff I regrettably take down. oooohhhh....juicy!

Still have a link right to the site in your email - if you read a little bit and want that full CG experience.

If you do it TODAY, you can say, "I've been a CG Subscriber since '09!" and look down on those latecomers in 2010 who try to jump on the CG Transplant Bandwagon*

If you get updates to your email, this means you'll be more likely to hear right off the bat that I'm in or out of surgery, since my Cystic Lady will surely update my bloggy as soon as she can!

Like I said, CLICK HERE, do it today!

*I am currently painting a wagon and training a tiny group of kittens to play instruments in it for the day of my transplant!

Wednesday, December 30, 2009

2nd First Webcam Video

A few things are obviousemente from this video:

a) I am having fun with the options on my webcam
b) I look less shitty tonight than I did last night
c) I adjusted my volume settings so you can hear me
d) The voice/visual still seem slightly off. Is it me, or is the audio ahead of the video? Pls respond.
e) I miss teaching little kids who actually enjoy my desire to pantomime most words as I speak them (see below).


Friday, December 25, 2009

Ain't: a random poest* per request from KR...

Ain't ain't a word that rhymes with Christmas.
Ain't ain't a word that goes along.
Ain't ain't a word to say for holiday jingles because
Ain't ain't a word to sing in song.

I ain't sure what the new year will bring me.
I ain't sure what it'll bring to you.
I ain't sure that this poem can fit under your tree because
I ain't sure that this poem will do.

see? it only SORTA works.

Love, CG/MEP
*purposefully misspelling.

Light One Candle

It is just after midnight on Christmas and I don't have much to say, I am so tired! But, the night before Christmas is just my favorite night of the whole year. So much excitement, magic, and love.

I hope I feel just like this on the night of my transplant.

More tomorrow! MERRY CHRISTMAS!

Thursday, December 24, 2009

So This Is Christmas!!

So much news. My CysticFamily is here visit and so wahooo! Much fun awaits.

I heard back from my surgeons and team in regards to the questions I posted. In fact, I received 4 responses, one from my surgeon, two from other physicians on the transplant team, and one from the social worker. I was very glad that they took the time to each email me back. It really put me at ease to know that they were listening to my concerns. Here are the two most informative responses:


Let's see what I can answer for you.

[Question: What invasive procedures are done during pre-op while I will be lucid/awake?]

1. Most of the invasive procedures are done with you asleep.

[Q: I am using the recommended book, _Prepare for Surgery: Heal Faster_. I made my healing statements and will bring them. Will I have time to tell the anesthesiologist about them? Can I also bring them for the ICU nurses?

2. People will in fact respect your requests for healing statements. Bring then with you, and any special instructions. You will meet with the anesthesia team in advance of getting sleepy and can discuss your needs.

[Q: Do you take music requests?]

3. Music requests, YES. if you send me the music in advance I load it on the iPod, if not, then you get the best genre I can muster with what is on the iPod.

[Q: Please don't remove my PORT during the surgery.]

4. Thanks for the update.

[Q: I'm making lost of progress at rehab.]

5. Good.

6. Have a peaceful holiday yourself. If you have any other questions or needs just let us know.

- [Dr. CJet^]


Hi [CysticGal]:

although many questions are related to the surgeons and the day of surgery, healing is a holistic process. bring your statement and music and have always copy that your family can handle to the different members of the team.

Make the most of rehab, as this is a tool that will help to prepare for the process.

Happy holidays

[Dr. DJet^]

^These are pseudonyms created using the super secret CysticGal pseudonym creation equation.

So, those are some pretty great responses to my questions, and they put my mind at ease. YAY!

More news later! Ho ho ho, Merry Christmas!

Tuesday, December 22, 2009

The Upside of Being "Data"

The New York Times has a great article, which you can read by googling "new york times cystic fibrosis" (The code link that I wrote in is no longer working), that discusses the CF patient registry and its impact on the treatment of CF. This month I wrote a poem that was sort of themed around feeling like a piece of "data" at the clinic, and it started some lively discussion on- and off-blog and twitter. This article explains the upside of all that data collecting, reviewing and discussing!

More later...

Sunday, December 20, 2009

What's Goin' O-On!

I haven't written a post in oh so many days so here I am writing this one, and it ain't even a poem! OH NOS!

I will perhaps write a poem later today. It snowed here, so ... you know...lots of indoor activities abound.

Not that I get out a lot anyway.

So the news around here is that there ain't no news. I'm not sure why I talk with a twang in my blog and not in real life, btw. Ain't ain't a word I usually say.

Anyhow.... a day in the life of CysticGal is such that I decided to start to email my surgeons because I am so worried sometimes that they forgot all about me, even though of course they cannot forget about me because UNOS is there to tell them when they find the lungs that are for me. But I have this nagging feeling, which Dr. UBird^ tells me is not uncommon, that my tx team has forgotten all about me since my tx evaluation was so rushed while I was so illlllllllll in the fall. I did not get to know them though they got to know me - though I can't remember much of it at all!!

So, here is the email I am formulating today, a sampling of things that are on my mind, a day in the life of CG:

Dear Dr. CJet^, BJet^, and Dr. DJet^,

Happy Holidays! I wanted to email you with a few questions/concerns regarding my tx surgery so that if I "get the call" before my next appointment I'll know that I sent out these questions.

1) What parts of the pre-op procedure are done in the operating room while a patient is awake and/or lucid? I figure that peripheral IVs will be placed, and I have a port. Are there any particularly invasive procedures done will awake? (Other than CXR, blood work, EKG)

2) I am using the _Prepare for Surgery: Heal Faster_ book that is recommended. I am going to bring my "healing statements" with me to the ER to give to the anesthesiologist, for her/him to say to me as I'm going under. I will also bring some instructions for my ICU nurses. I don't know if people really use them or not but it'll make me feel better just to bring them.

2.5) There is a rumor that Dr. CJet takes music requests for surgery. If this is true I will provide such a request. :)

3) So that the team is aware, I am now on 10mg of prednisone every other day, and about 1/2 way through the 12 weeks of Pulmonary Rehab at St. ESaint's^. Making a lot of progress.

4) I would like to keep my port, if possible. Please try to avoid removing it during the surgery.

5) I have begun seeing Dr. BThink^ on an outpatient basis for my psych follow-up.

6) I am taking "Azli" or aztreonem on a month on/off basis in rotation with TOBI.

Thank you for taking the time to review this email. Have happy and safe holidays, -CG

So that's the end of that email. What else should I ask my surgeon? What are your experiences with these questions? More later!


^These are pseudonyms created using the super secret CG pseudonym creation calculation.

Friday, December 11, 2009

What Are Your Poems About, Lady?

I've had a couple of emails over the last few days that ask me about the poems, so I thought I'd take a second to reflect on writing in general and why I write in the forms that I write in.

First of all, the poems are not about you. Or you or you or you or your mother or your husband or your doctor or your blog or your email or etc. My poems are only about the very words that are in there. If I wanted to just say something outright about me or my feelings or my friendships, I certainly would just try to say it, or like every other good American, I would just pine on it for days and get a migraine. :) Poems, for me, are about all sorts of experiences and ideas and feelings and observations all mish-mashed-platoonked together and zoopled out into their form. When someone asks, "Is that poem about..." my answer is usually "um . . . maybe. I guess so, well, not really . . . I don't know."

I just wrote a poem that some could read literally and think it was about my doctor and my very last doctor's appointment- not at all. It was about a general feeling I have at the doctor and general language that is battered about at the doctor, and mish-mash-platoonk, a bunch of other thoughts and feelings into a poem. But why does it matter what I thought the poem was about? It does not matter.

I think poems are just exactly what they are when the reader reads them. In theatre, I always tell the young actors, "if the audience sees it, they're right," because young actors always want to say, "you didn't get my scene, it was about . . ."- but the truth is, if the audience sees something clearly it doesn't MATTER if the actor thought they were showing something else. Same is true for poems. Whatever the reader reads, that's what the poem's about. It doesn't really matter what I think.

And, L'Chaim!
Happy Hanukkah!

More poems soon,
I am in the holiday spirit!!

And as of Friday, 2 months on the tx list. Sigh. Any day now!!

Love, CG

Wednesday, December 9, 2009

Twitter it Up

Tweet you!
This is your formal invitation to follow me, @cysticgal, on twitter!
I bring this announcement to you because tonight the Tweet Cystic Fibrosis (#CysticFibrosis) community is heating up about the episode of "Mercy" on NBC. What do you think?

Here is what I think...

"Hopes no one watched "mercy" cuz its CF depiction was super fake, but maybe good to even have CF on tv. i am a woman of two minds. oh and also i didn't watch it, after 5 mins I was like, super stressed by it and its fake-ness. blood transfusion to treat lung infection?eh? down to 2L from 3L lung vol?What alien lungs does that kid have?"

The other tweets, you can read to the right or by loggin' onto Twitter, today!!

Monday, December 7, 2009

Three: Afternoon Assessment

[removed by CG, but included in my new chapbook!]

Sunday, December 6, 2009

First Snowfall of the Bloggy

Lately I've been too tired to keep up with my original back in the day goal of one post per day, so I'm going to try to remedy that by writing some darn thing on here during my nebulizers. In theory, this should provide at least 1 and 1/2 hours of bloggy time per day, though of course I won't spend the whole time writing. I'll also be visiting my bloggy community members.

This week has been pretty good. I've been increasing my exercise at pulmonary rehab, which has also increased my need to nap and rest :) - it's been kickin my ass!! The past few days, I've been having some "deSATs" or oxygen desaturation- around the house, so Dr. U-Bird is going to write me a prescription for some steroids, which the tx (transplant) team okayed at our last appt.

I sure do love abbreviations, or should I say abbrevs., today, 2day.

It snowed here, not much but enough for it to be enjoyable.

I am going to try to write ten poems on CG. I only have two so far lately.

I'm going to go work on number 3.

Love, CG

Wednesday, December 2, 2009

Tuesday, December 1, 2009

One: Sunset Sing-Along

[I deleted this poest because it is included in my chapbook, "Unto the East." However, the very hilarious original ending is worth keeping up:

love or money in the end, plus their pride on a long
journey home. I win only one of those though
you could guess which it is - score one for me.


** I do not like the end of this poem but it's kinda funny so good enough for me to post...
goodnight, and K-Poet, I hope you're happy! :) -CG**