Wednesday, February 24, 2010

Shingles, not of the roofing kind....

Well, after a relatively easy day yesterday (i.e., feeling rested and well after ALL that sleep) we went to the Cancer Treatment Center for the "easy" shot. Now, why I'm remembering this shot doesn't hurt, I don't know because yesterday it was a "stangin".

Then we discovered that I have a little case of the shingles. Damn. If it isn't one thing, it is another. So far it hasn't hurt too badly and I think we caught it on day one.

Did have more of an appetite yesterday and it was the SWEN moo goo gai pan that made the difference. That was some tasty fare!

After that, I sort of tuckered out and spent the rest of the day in bed. I'm just having to take the attitude that my body is telling me what I need to be doing, though I do know I need to be getting some more exercise.

Jelly legs could be my new name. Who knew stepping over a threshold could be so HARD????

Tuesday, February 23, 2010

Sorry for the delay in posts.....

Home again, home again has been some wonderful medicine.

LOTS of sleep has been on the agenda. And I mean LOTS.

We are now transitioning into our Cancer Treatment Center routine. Yesterday was a "long" day with Dr. visit (things are progressing as expected), chemo treatment, two shots, and finishing with the lumbar shot of methotrexate. It was nice to be told to come home and stay flat for the next 24 hours after that.

At least I can report that the "high anxiety" level of getting that lumbar shot a month ago is now "nill".

It is nice to get back on track with a little normalcy, though I love and miss my nurses and friends at DCH.

Normally, at this time of year, I would be frantically trying to get ready for Cottontail Village in Bham. Paint, stain, glitter, strings would be covering the house. I would be worried about having enough to take, my helper Jamie would be calming me down.

Perhaps God just knew I needed to recharge my soul.

Love,
Penny

Thursday, February 18, 2010

Home again, home again, jiggety jig!

YEA!!!!! Will be going home this morning, we hope! That is usually the plan. Keep your fingers crossed!

All my "counts" have really improved, especially my white counts which had put me back here in the first place.

I don't know what time all this will take place....sometimes it happens quickly, other times it might drag on a bit.

Just can't wait to be home again!

Wednesday, February 17, 2010

Tuesday, February 16, 2010

Dreaming big....a musical interlude



Do you know the music from this musical theatre production from the late 70's?

If not, you should. Period. Don't argue with me.

The music was written by two members of ABBA, lyrics by Tim Rice. How could this be bad?

Today, while bopping around youtube, I found a video of somebody who dreamed big, in a HUGE way.

Susan Boyle. And no, this is NOT a recap of her Britain's Got Talent video. It is one that I was shocked and excited to see.

Before Susan Boyle, frumpy as could be, opened her mouth to let forth that voice, Simon asked her what she would like to do. Paraphrased, "have a career like Elaine Paige."

Do you remember the audience reaction? Shock, not even benign amusement.

This dowdy, frumpy woman wanted a career like Elaine Paige? The doyenne of musical theatre in Britain? The woman who had originated the roles of Cats, Chess, Evita in West End theatre?

Well, folks, I'm here to tell you. Susan Boyle can hold her own with Miss Paige. Big Time.

Here's to dreaming big.....oh, and in case you didn't make the connection between Chess and the video below, it is a song from Chess, one of the most beautiful of many. And THIS is what Susan Boyle got to sing with Elaine Paige for their first time singing together.

OMG.

Here's to big dreams!


Just gotta talk about being PFATT......LONG

First, the daily health update.

Reporting from DCH, our trusty Penny McAllister, not far from her cup of coffee.

Dr. Hinton reported yesterday that "numbers were up" in all areas, especially white counts. Penny hasn't had enough coffee to remember the number but David is an "early" visit doctor so may see him in few minutes and can update some more.

Penny walked down the hall a little bit yesterday so she wouldn't think about the total body itch, cause unknown but suspected to be antibiotics, which can't be discontinued at the moment. She also found out much strength she has lost in her legs because she couldn't walk as far this week as she did on her first walk. Get out of the bed, Penny!

A dermatologist has been in for a consult and guess what. He put Penny back on prednisone. Not as much as before but the girls could tell a difference last night when they brought HOT POPPY SEED CHICKEN out to her for supper. DIVINE!!! Plus, she had an appetite, probably due to the prednisone she had had yesterday. WHY does this drug have to be so BAD for you but do such GOOD things in so many ways?????



As you can tell from an some earlier entries that I am a member of a group of artist friends on ebay who go by the acronym of PFATT, or Primitive Folk Art Tea & Talk.

I need to let you know more about them and I hope this won't offend any of my local "sisters" in art, of which I have MANY.

Flashback to the late 90's. Computers were becoming more commonplace in homes. Digital cameras were starting to appear.

In addition, there was still an interest in the crafting world in, well, crafts, but some folks were beginning to move away from the 80's look and raising the bar, or at least changing the way the bar looked. New, fun, wacky styles. People who colored outside the lines.

The first name that comes to mind is Sonja Sandel aka Hickety Pickety. I would run to the grocery store to look through the pattern ads in the crafting magazines to see what she had done. Her patterns and newsletters were a "stitch" to read. There no rules. Just have fun. How freeing! One day I summoned the courage to call her phone number to ask a question about a pattern and SHE answered. I was in shock and awe, to say the least. We conversed for a while and finally got to meet about three years later. Sonja is a great lady who has "left the business" as she puts it, but she was a PIONEER in putting a certain "look" on merchandise in the marketplace. If I'd had one pint of her blood, I guarantee that it would be kicking this leukemia's ass, because she's that kind of woman.

As more and more women gravitated to having computers at home, new worlds opened up. People like Sonja started "selling" sites where you could "meet and greet" and learn from other artists and also have a venue to show your work and sell it. One of the other first groups like this was called "Folk of Art", started by Jenn Steffa (aka folkgirl7). She started a "forum" that really caught on and lots of "early adopters" of computers/art/crafting and ebay sellers started out on that forum. It was so great....you suddenly were "meeting" lots of women, all over the US (and world) who "understood" what you loved to do and could talk to them whenver you were online together, be it 3:00 a.m. or 10:30 p.m.

I won't go through the rest of the history of how groups started popping up everywhere. Just know that they did. I remember telling someone on the FOA board that this was just the "tip of the iceberg" re: women, crafting, handmade goods, etc. It just felt like a "revolution" or sorts was brewing.

Brewing it was, because now there are groups everywhere, magazines devoted to the art of scrapbooking, dollmaking, wearable art. The Somerset magazines are divine. Where Women Create is pure eye candy.
I could go on and on. Things that would have been impossible to find ten years ago. Conventions where artists meet other artists like themselve, learn new skills, make new friends, learn from the leaders in the field. Special websites for ONLY handmade goods, such as Etsy have popped up.

I guess, what I'm trying to say is that this artist/crafter movement has allowed so many women to be noticed, appreciated for their talent, all while staying home and taking care of families. The best of both worlds, maybe? I think so. And even better is the fact that these women have learned (or are learning) how to promote themselves and their artwork. I just LOVE it!

So what does this have to do with my PFATT sisters and this tree that is up for auction?

I was invited to join PFATT at a low time, professionally for me, by Christy Meyers. I wasn't selling on ebay anymore because I had let myself become intimidated. She knew that but wanted me to be a part of the PFATT family, a decision I've never regretted. Sweet, wonderful women, diverse in their talent and style, a joy to be a part.

But the best part of groups like this is when you get to actually MEET people in the group, an opportunity I took two years ago when the "PFATT PFEST 2008" was held in the NoCal area. OMG, what a fabulous time! Napa, San Francisco, Alameda flea market, touring the whole area, lots of lemon drops, laughter, tears, etc. And this was only eleven out of 50 of us. Again, I could go on and on, but I won't. Maybe later, though....

And these are the women who instigated, planned, organized, made, donated their time, talents, and artistry to bring you the PFATT Penny Feather Tree. Many of them have never met me and wanted to do this. Many of them HAVE met me and STILL wanted to do this! LOL!

Bless the Pfatties, one and all.

Love,
Penny

Monday, February 15, 2010

Ornament tree auction has begun!



--


I was going to blog about it last night but fell asleep quicker than I thought I would.

The ebay auction has begin! Click here to see it!

Anyone is welcome to bid on it! All proceeds going to the Alabama chapter of the Lymphoma and Leukemia society.

Yeah, peeps....for all practical purposes, it has been that kind of weekend.

Everything that has blithely seemed ignore me, chemo reaction - wise, has turned up in Room 221

Here's hoping to a better second half of February, 2010!

Friday, February 12, 2010

Promises, promises.....

Yeah, those weathermen make hollow promises to us all the time.

Monroeville to get 2-4", now they've changed T-Town to a "dusting"?

Even though I can't get out and enjoy it, I at least wanted to look out my window and SEE SNOW!!!!

I'm just going to have to turn off this darn TV and forget about it. Probably could have even had school today, not that that matters one whit to me anymore.

But, I know it has to be frustrating for those involved in making those kinds of decisions....Yes? No? Maybe? Yes? No?

Up with my cuppa joe, trying to blog a little bit. Slept pretty well but had some new pillows I couldn't beat into submission.

I also stayed on atarax all day yesterday which made for an interesting day of sluggishness.

Waiting for blood test results now. Yesterday was close to needing one unit, and could tell, but they decided to wait until today to see how the red cells were doing...dropping or rising in number.

Had a chemo shot yesterday...asparaginase...aka e coli. (Or has e coli mixed in?) You may recall from earlier posts in December this is the one where the nurse said "We'll give you a little to test your reaction but will have a CRASH CART outside the door in case you go into anaphalactic shock."

WTH? But, it was no problem and has been fine ever since. In fact, I even managed to mess with Nurse Emily's head the other day after she gave me the shot for the first time. I waited long enough and she asked how I felt....so I made a twisted face at her and stiffened my body. Probably shouldn't have done that but I knew that the reaction is almost instantaneous so that's why I waited.

Nurse Stephanie said "Oh, I just new she was going to do something like that....I could tell by the look in her eyes." Poor Emily...she said "WAIT til I've done this 20 times before you pull something like that on me again!"

I start over with "Level 2b" of my chemo on Monday...which is essentially a repeat of what I've done the past four weeks, starting with a spinal of Methotrexate. Last time I had that I was wired for 24 hours and wasn't sure it was from the adrenaline of being scared or the drugs.

I won't be scared this time.

Have fun playing in whatever snow we get!

Love,
Penny

Thursday, February 11, 2010

The rest of the pony story......

I found out from cousins and mama that Aunt Mary gave the pony cart (it WAS Steiff.....DAMN) to Charlotte Woodley for her children Jim and Dollie to use. After that, we don't know what happened to it. DOUBLE DAMN!

So, yesterday, while on a small phenergan trip, I lay in bed imagining that the cart might still be in the basement of the house they lived in in Pinehurst. Or that maybe it was stuck up in some garage rafters or something. Or maybe in a neighbor's basement or attic.

I guess I need to get out my Nancy Drew clothes, start of up my roadster, and get sleuthing!

My mother also added this story....I don't remember it happening but that's not saying it didn't and it does sound just like Frances!

One funny thing that I thought about that pony cart was that Frances Leapard got into it and just rode down the sidewalk one day with you running after her telling her it was your turn.She turned around and told you that she didn't take turns, didn't know what turns were and that you could just wait your turn.

You cried and Bobby (what I called my grandmother Lamont) went over to see Frances's grandmother and she got her out of the cart. Frances had a wonderful collection of toy kitchen furniture on that big front porch and she very quickly told you that you couldn't play with her with the furniture anymore. That ended playing too much with Miss Frances!!

I grew up to work for Bill and Doris Leapard...ahhh the stories, the design, the fascinating rooms upstairs that Bill decorated, the wallpaper books that were kept on the second floor of one of the garages out back......so maybe they didn't know about selfish Miss Frances and the pony cart.

As an aside, I LOVED working at Leapard's, as well as The Collector's Shop. Such fun things to see and do every day!

I turned on the TV for the first time since I got here to check the weather after a nurse had mentioned snow for this weekend. I haven't check this morning, though the weather channel did move from 40% chance of precipitation to 70% as I lay in the bed thinking how glad I'm not at some Baltimore (or nearby) hospital, waiting for my family to come for a visit.

WOW...talk about snow! I have a friend, Joanne Harper, that lives around York/Lancaster, PA area. She can already open the windows of her house and reach out and grab snow, it is that high. And that was just yesterday, before the next round was supposed hit.

Debby Brown, are you ok? Debby lives in Valley Forge.

Healthwise, I got some potassium through my pik line yesterday, so NO BURN. After struggling with taking just half of the ginormous pills yesterday, my nice nurse decided to order the liquid! Yea for Nurse Stepani!!!

Otherwise, things remain about the same. Low white count. Red fluctuates but haven't need blook transfusion in last couple of days. Platelets I got yesterday plus the extra potassium. Might even feel fit enough to venture and poke my nose outside if it actually DOES snow on Friday! Wow, just saw a map for tomorrow on Weather Channel

Get your taco soup made, girls!

Take care and have a great Thursday!

Love,
Penny



Wednesday, February 10, 2010

Up and attum!

Breakfast ordered. Check.

Gmail read. Check.

Bopped around facebook. Check.

Still itching like crazy. Check. (OMG....Katie, I had NO IDEA how miserable you must feel so often. NO IDEA.)

Hoping that a change in bath soap will change the itching. Other than that, I'm going to have to live on Atarax, permanently.

Which will result in my sleeping ALL THE TIME.

Great, and I mean GREAT night of sleep. Check.

Tell me, is it Wednesday or Thursday? Inquiring minds want to know!

Love,
Penny





Tuesday, February 9, 2010

Phenny Penergan...oops make that Penny Phenergan.

What a woozy day today! Phenergan, twice. Zofran, once, three imodium.

Yes, three.

They have started up again on stripping floors in the corridor of 2 Southeast (oncology wing). They did this last night from 4:30-11:p.m.

I can deal with the noise but the smell, to folk that are already hypersensitive to smell, odors, etc., just seems WRONG. Bur what can I do? Hmmmm, I could call Bill Cassels. Yeah, that's the ticket.

I woke up this a.m. feeling pretty good. Until I started itching. We don't know whether it is from funky liver enzymes (now going down, thank heavens) or to all the antbiotics I'm taking and maybe developing a sensitivity to that.

Always someting.

Upshot was I got some Atarax which promplty made my sleepy again. Top that off with another dose later and the two phenergans and one zofran and I was just part of the bed. Couldn't peel me off if you wanted to.

My mom sent me another funny story about the pony cart. I'll share it tomorrow!

Love,
Penny

Monday, February 8, 2010

So, I keep thinking WHY am I so TIRED???

Well, duhh, Penny. You have leukemia.

You are getting chemo.

Both will make you TIRED. Really, really TIRED.

GET OVER IT! Understand it. Move on.

Or, so I keep telling myself.

Yesterday was another tired day, due to lack of sleep on Saturday night. I think I made up for that last night. I feel much better this a.m.

I rallied after some phenergan. Miracle stuff, that phenergan. So, by 4ish, I was feeling better.

Read for a little while. (A W.E.B. Griffin novel set in WWII, New Orleans, Argentina, spies, Germans, etc--one of my favorite kinds of "reads".)

I was especially interested in it because during the end of the war, my uncle, Jim Marlow, happened to be in New Orleans where they were having an auction of stuff that had been on its way to the ex-pat Germans in Argentina for Christmas.

I can't remember if the ship (submarine) had been captured but I don't think it would have been blown up or the items wouldn't have been intact.

He brought home pony cart that could be pedaled. The pony was a huge stuffed animal, I think a Steiff. We (my cousins, Rudd and Jimmy) and neighbors (Polly, Vicki, Ellen Newton) would pedal that thing all around 15th Avenue. The legs moved the pony like it was picking them up and putting them down. A magnificent toy.

I wish I knew what happened to it.

I wish I could pedal it right out of the hospital today...or at least up and down the halls!

Take care and have a wonderful Monday.

Love,
Penny

Saturday, February 6, 2010

Sleepyhead jones day

I cannot wake up this morning! All I want to do is pull my mask down over my face and sleep some more.

I think I will!

I did have to have my groshong pulled yesterday and a "pik line" put in my upper arm. At least it is giving blood easily. SO FAR. I just have to figure out how to maneuver regular clothes over this thing so I won't have to revert to the awful gowns. UGH.

Maybe some reading before I shut down for my morning nap.

Don't be jealous. Remember, I'll be happy to trade places with you~


Love,
Penny

Friday, February 5, 2010

As for my health agenda, today......

LOW BLOOD, again. Probably two units later.

My magic Groshong port is acting up so I have to go down for a dye contrast on it to make sure it isn't leaking where it isn't supposed to be. May have to get another line in my upper arm. BUMMER.

Waiting for seven minutes before I can call for breaky. Really enjoying the eggs over easy. At least I know I'm starting the day with good protein.

Have been reading my Kindle a LOT since I couldn't get on computer until this a.m. Finished one David Robicheaux novel (main character) and also one book by Harlen Cohen. Thanks Pam, for suggesting those! Am now on second Harlen Cohen novel, as I got a deal on a "two-fer" from Amazon.

Off to look up one of our book club books, by Gin Phillips. Title escapes me at the moment. Susan McCarthy said she was Eudora Welty-like in her writing so that is intriguing to me!

Hopefully I can get on computer again later today so I can report in.

Love,
Penny

Pandora, pandora....send Mr. Jobim right over!

Ahhhh, yes. Pandora on my iPhone did make for a pleasant afternoon yesterday! Thanks, MK for helping Meme and me out!

I did a Diana Krall channel and caught lots of faves that way--Michael Buble, Ella Fitzgerald, Norah Jones all appeared on the DK station.

But....for total drifting away I put on my Carlos Jobim channel. Totally in love with this Brazilian composer. Anything he writes, sung by anyone, I love. For example, I just discovered this version of my favorite Jobim song, Corcovado (Quiet Nights) sung by Queen Latifah.

I LOVE Queen Latifah and this is a really nice version! After hearing her sing with Rod Stewart on his standards cds, I knew she would do great in this genre!

Thursday, February 4, 2010

internet malfunction

The wireless at DCH is not allowing mom's laptop to connect...hence no blogs from her today...

I've encouraged her to post from her mini-laptop (iPhone) so hopefully she will. I downloaded Pandora on both Mom and Meme's iPhones today, so I imagine they are both lounging in room 221, feet kicked up, white cords from both ears, resting their eyes to Michael Buble, Diana Krall or even the Police*- as Meme requested.

Wednesday, February 3, 2010

still no net......


Sorry, folks, Short and sweet will have to for the moment.

Not awake enough to gauge how i'm feeling this morning. Waiting to get blood drawn
out of my Groshong port so we'll know the "lay of the land" today. Will probably need platelets for sure.

They just brought me some coffee so let me go get a sip or three.

Back later.

Love,
Penny

Love, Penny

- Posted using BlogPress from my iPhone

Monday, February 1, 2010

Vampires and chemo........

Got my blood yesterday but didn't take that walk. I will make up for it today and take two walks. I stayed in bed while I got my blood....my bed was very toasty and warm and felt very nice....and did get up to eat but crawled back in the bed for the rest of the evening.

Getting blood always makes me think of being a vampire....I understand them (fictional though they are) so much better now!

This might be TMI for some of you, others might be interested so I thought I would at least share (and clarify) what I'm facing chemo-wise for the next several months. Ummm, make that next couple of years.

My most intensive chemo, meaning I go to the Cancer Treatment Center, will run through the end of May. Some weeks, it is a couple of times, other weeks, four times a week. Those four day weeks usually involve just a couple of shots, so it isn't like I'm sitting there for some long infusion. Plus, once we discovered that scheduling the shots for 1:00 means easier parking, and more "in and out" and back home again, it isn't so bad to think about. The only thing that throws that off is if I need blood. THEN the fun begins! A short trip becomes a long afternoon.

In March I will have 12 days of radiation on my brain, a preventative sort of treatment.

I will have a period, in April, where I will go once a week for an infusion as well as a treatment I receive through my spine. The first time I had to do the spinal thing, I was a nervous WRECK. Now that I know what it is like, it won't be so bad. Plus, the room is really warm and feels good and the radiologist that did it the first time had a very soothing voice. It's the little things, folks, that can make a HUGE difference.

Then, starting in June, I go to a once a month visits at CTC. These will continue for two years after my initial diagnosis, so we're looking at December, 2012 as an ending date. This, of course, is assuming that I behave and that the chemo is kicking ass and that I haven't relapsed or something.

All of this is accompanied by oral chemo that I will be taking but at least I, and now you, know sort of how my life is scheduled out.





Also, got my sleeping meds an hour early and it made a HUGE difference to get an extra hour of good sleep before the shift change and the activities that surround that....temp, blood pressure, etc. I just keep my sleep mask on and hold out my arm now....it is great!

Peace out!

Love,
Penny