Since I haven't posted for a while...

I figured that I SHOULD. ;-) Unfortunately, though, there isn't much to update on. With the appointments with Lister spread out to every 3 weeks, nothing (medically at least) happens between that time. Which is GOOD (don't get me wrong), but there isn't as much to report on as there was previously.

In the meantime, I have been keeping busy painting large plywood stars. Why you ask? The city of Pittsburgh won the hosting of the Baseball All-Stars game this year. To celebrate they want to fill the Penn Avenue corridor of downtown with plywood stars that are 4', 6' and 8' in diameter. They put out a Call for Artists to submit design proposals the stars in May "to depict and/or express actual events, places and people from Pittsburgh’s past, present and potential future that represent our city’s brightest citizens, hopes and amenities."


I submitted two and they were both accepted. The first, a Pittsburgh token, was Mr. Fred Rogers (he's on a 4 foot star). The second, is George Ferris, the inventor of the Ferris Wheel (he's on a 6 foot star). I finished painting them on Saturday and started the final glazing and varnishing layers yesterday. Of course, if I could just get this weather to dry up a bit, it would greatly help the drying time!

SOME progress!

Finally, I have some progress to mention! On Thursday, I met with Lister and he finally felt that I could begin to take down the steroid amount! Granted he is taking me off of it VERRRRRRRY slowly (just 5 mg less every OTHER day), but HEY! it's better than nothing. My next appointment isn't for another 3 weeks, when he'll hopefully take me down an additional 5mg. At this rate, I should be completely off the steroid by....21 weeks. WOAH. That's almost another 6 months!!
*Sigh*
Oh well, right? It's better than cancer.

On another note, I think (fingers crossed) that I have had my last bone marrow biospsy. Or at least my last one for a while (the last one required for my current treatment). And I just gotta say, SONUVAGUN! There's is NO easy way around one of those things. I try the whole imagery thing, deep breaths, short breaths--you name it, but really, NOTHING is making that needle in your hip hurt less unless it's a numbing drug. Luckily the lady that did me on Thursday was of the school of thought: "the more juice I can give you for that, the better." That made me hold her in very high esteem. :) Why would they do anything else for the patient? Just give us the juice, man! The worst that can happen is that our butt cheek is numb for a few hours afterwards and surely that can't be worse than trying to drink water after having a filling done at the dentist, right?

And the birds warbled on high!

Last night we got "the phone call" from Home Depot letting us know that the fridge that we ordered _over a month ago_ would finally be delivered to us today. Well, it did actually come and it is gorgeous! Lovely, shiny beast...we love you!

One step forward, two steps backward.

Argh. It seemed to both Ralph and me that my rash was cooling down and my energy was increasing. We thought it might be a sign that the GvH had cooled down enough so that I could begin to come off the steroids or get taken off them completely.

Nope.

So, the rash DID cool down and I did have more energy, but apparently the GvH decided to go elsewhere--my liver. Nothing hardcore still, but Lister saw that my liver levels were even higher than they were 3 weeks ago and decided to put me back on CellCept (a 3rd immuno-suppressant). He said that he wants to do this first before pulling me off the steroid. I guess it's like a safety net--make sure my system is calm before trying to slide out the steroid slowly from below (I'm imagining those guys who grab the table cloth and pull real fast so that the plates stay on the table). However, it sucks now, because I'm probably going to have the most energy that I've had since the transplant, AND be the most susceptible to infection. *Sigh.*

For Juan and Ari

Last October, Juan Carlos and Ariadna got married and for their wedding gift, I offered to give them a painting. The following weekend, we got together for a couple of hours for poses to paint a portrait of them. This weekend, I finally presented them with the finished product.

First shower of the year!!

Actually, it's my first shower in over 5 months!! Since November 26th, I've had a port in my neck for the nurses to get quick and painless blood draws. With the appointments slowing down to once every 2 to 3 weeks, I wasn't sure it made sense to keep it in. For those of you I haven't spoken to about this directly, it was essentially an IV line that accesses my jugular vein. It was clamped down on my collarbone and sealed with a clear plastic "dressing." It was one tube coming out of me, but then it splits into three tubes to allow for multiple medications or IV bags to be attached to me while I was under treatment or in the hospital.

In any case, after talking with Lister about it on Monday, we decided that we could probably safely take it out now. So, he says, "We'll do it right now if you want. Hold on..." and he exited the exam room. I'm thinking, "HUH? Uh....don't I need to go the surgery area or something?" He came back in with the last nurse there in the office that evening. She says to me, "Don't worry, it won't hurt. Now, turn your head away and exhale." If someone had told me that you could have 6-7 inches of tubing pulled from your jugular and barely feel it, I would NOT have believed them. However...really, I barely felt it. Just a sliiiiight pinch and then the pressure of her hand on my neck to make sure that there wouldn't be any bleeding. And there wasn't any! No blood on the tube, no blood on the gauze. Bizarre!

Needless to say, the pleasures of not having my tubes to worry about are great. I couldn't shower before because the dressing couldn't get wet, which meant months and months of baths. Also being careful not to roll over on them in the middle of the night and accidently pull them out (which the doctors fill you with stories of folks who have done just that). Not to mention that anytime I looked in the mirror or got together with a friend, there was this glaring reminder [of the obvious], and it's really getting too warm out to wear turtlenecks all the time.

Interestingly enough, I put on a tank top today and barely noticed my the scars on my chest. I'm just so happy to not have the port sticking out anymore that all other marks on my chest seem minimal. To celebrate, tonight, I'm baring CLEAVAGE.

Kicking and screaming.

Sometimes, like today, I've had it with cancer and being sick. I DON'T WANT TO BE THE GIRL THAT HAS CANCER ANYMORE. I'm done! You hear me, Mr. C?!! Bugger off. Find SOMEONE ELSE.

I'm tired of worrying about every little pain. I'm tired of being TIRED ALL THE TIME. I hate looking in the mirror and seeing this bloated rash covered face THAT'S NOT MINE. I want my hair back. ALL OF IT. I want to be able to look at summer blouses and not immediately think about whether or not they will cover all of my scars, before I even check for my size. I want to be able to eat spicy food and not worry what it will do to the inside of my mouth or my esophagus. I want children to be able to hug me without having to recoil with the fear of the germs they are carelessly giving me. I want to forget that I've ever had this disease.

It's days like today when I want to find the fabric of the world and bunch myself all up in it, kicking and screaming--thrashing about like a fish out of water and screaming like a banshee.

Quote of the Day #2

"He's a useless type of person."

Spoken by someone describing an acquaintance who she felt didn't contribute anything to her person or society as a whole. Which, really, it's not THAT unusual of a statement, it was probably more in the delivery of the line. It was a phrase that came out like a matter of fact/casual statement like, "Saturday? Yeah, Saturday comes after Friday."

Sleepy, Sneezy, and Snow White all in one!

No excuses, I know. I really should have posted before today. It's just that things have begun to move a little more slowly. I felt like there wasn't anything majorly different--just more time recovering. The doctor's appointments have now moved out to once every 2 weeks rather than weekly. My next appt is in a week, at which point Lister said he is considering pushing out the time between our visits even more. I'm hoping that if he pushes out the visits, then the port would also be ready to be taken out. It would be nice to be able to take a shower again (I've had to have baths only for the past 5 months).

Any of the side effects that I'm experiencing are nothing new: extreme dry eyes, fatigue, skin rash, and other minor GvH symptoms. One thing that I can say is that the cramping in my hands and feet has let up almost completely. That's been a big relief. My face is still a bit puffy from the prednisone and interestingly enough, all of my hair hasn't come back yet. It's mostly there, but I'm not the hairy beast I used to be. I think it's because I have the GvH going on in my system (thinking that my body is using the protein to work rather than go to my hair and nails). Like everything on this recovery, it seems like it's just a matter of waiting and resting. You know, the other day, I slept 17 hours in one day!! Unbelievable! It seems ridiculous to me that I could be THAT tired. Lister says it's normal. He says that GvH normally will make a patient tired, but on top of that, the fact that I've gotten the GvH so soon after the transplant is going to make me even more tired. (My body hasn't had a chance to recover from the transplant). Oh well. I guess I'll just roll back over and sleep some more.

Newness

Tonight, I looked through images on the internet of babies for a card I wanted to make for a friend who just had a baby. Actually, she's the first of my friends to have a baby, so I'm ridiculously excited to go and see her and the new one tomorrow.

As I'm looking at the images of the babies, in all their baldness with chubby cheeks and big eyes, I can't help but think of cancer patients and how they look surprisingly similar. Then I remember that when you receive your last dose of treatment, it is considered your "birthday." For instance, mine would be December 12th, because that was the last day that I received chemo with this transplant. Some treatment centers actually give you a balloon or card to celebrate. I just thought that was an interesting parallel--being bald and chubby-faced, and in the case of donor transplants new DNA--again...a new life.

Still on the steroids...

So, I had my weekly appointment with Lister on Monday and he has left me on the last 20mg of the prednisone for now. He seems to see some chronic GvH kicking up. He wants to play it safe, so I don't end up back in the hospital. Although I'm definitely disappointed I won't be off of the steroids yet, I would totally prefer to not get sick again like I did in February!

On the otherhand, Mother Nature has taken pity on Pittsburgh again and is offering a high of 70 on Friday! FANTASTIC!

Quote of the Day #1

"Everything sounds better in the bathroom."

This comment was said in conversation to me in reference to a husband who likes to sing while cleaning the bathroom! (Hee hee).

Sometimes folks say things to me that strike me as particularly hilarious or fantastic or weird or ignorant. I've been meaning to write them down, because they are usually so...potent/unique/succinct. So, I figured what better place, than here? :-)

Celebrate good times!

On Friday, Ralph and I celebrated 6-months of marriage. We went to a tiny, tiny Italian restaurant and ate quite well, and then proceeded to spend the weekend together (normally, Ralph has to work). We went for walks, hung out/read on the sofa, sipped hot beverages, and snuggled. ;-) It was nice. Very, very nice. Now, if I could just get the weather to warm up and get me off these steroids, we'd be smokin'!

From 73 to 37 !!

Argh! Pittsburgh had these beautiful temperatures lately (yesterday was as high as 73!!), and now today, it's 37! :-( Oh well, I really can't complain too much, though. It's been a very mild winter in Pittsburgh this year.

Okay, it seems that I've been "tagged" to answer some questions from a fellow blogger--like "TAG, you're it!" So, here's one of those little surveys in quantities of four:

Four jobs I'’ve had:
Coffee wench
Gap girl
Summer school Arts + Crafts Instructor
the obvious current: graphic designer

Four movies I can watch over and over:
Frida ( "I think it's good. It's very good.")
Ferris Buellers Day Off ( "...in two weeks, you'd have a DIAMOND.")
French Kiss ( "No, not the cow! I just ate that cow!")
Super Troopers ( "Why did he say that?" "He thinks I'm Mexican." "Oh..you're not?")

Four TV shows I love to watch:
Medium
Divine Design
Scrubs
Rachel Ray's 30-Minute Meals

Four places I've been on vacation:
Spain
Germany
Croatia (pictured to the right)
Las Vegas

Four favorite dishes:
Lemongrass beef (from Spice Island Tea House)
Gado Gado salad (also from Spice Island)
Ralph's french toast
California rolls with miso soup and edamames

Four websites I visit daily:
Google (homepage)
Dooce
Drawn
The Superficial (although really, not daily--just whenever I wanna chuckle)

Four places I'’d rather be:
Some place warm where they speak Spanish...I'm thinking the western coastline of Mexico
Lake Winnipesaukee (but I gotta change the season to the summer)
Figure studies drawing session
German language class

I'm going to add four books that I've read recently and loved:
The Devil in the White City, by Erik Larson (still reading it)
Memoirs of a Geisha, by Arthur Golden
The Harry Potter series, by J.K. Rowling
Einstein's Dreams, by Alan Lightman (can read this one over and OVER)

Day +100 !!

So, today I celebrated my day +100 post-transplant. This is an important day, because it is the sort of line between acute GvH and chronic GvH. Granted, in my case, Lister says that the +100 mark isn't so important since I've been 100% donor since Day +26, but that still didn't stop me from enjoying a nice big piece of carrot cake to celebrate the milestone. :-)

Okay, I'm ready to be done with these steroids...

So, that initial high of appetite and motivation was great, but now the side effects of the steroids are beginning to kick in and make me wanna get off of them ASAP. The first one that I noticed was the sleep interruptions. It tends to speed up your blood pressure, and I find that makes it very difficult to wind myself down to go to sleep.

Another recent problem from them is cramping. Without warning either of my hands will suddenly contort to the shape of an old arthritic woman's gnarly hands. It doesn't last too long (like 30 second intervals) but I'd say it's happening, on average, of twice a day. Grrr.

However, the most worrisome potential side effect of the steroid that I'm on, and the true motivation for the purchase of the treadmill, is that they can cut off blood flow to the artery that feeds the ball/socket joint of the hip. If that happens, the bone won't get any blood/oxygen and can die, resulting in the need for a hip replacement. WOAH, Nelly! This, my doctor tells me after I explain to him that last week I woke up one day with excrutiating pain in both knees. He said that the best thing to do was to keep the area active, so the next day, I phoned my brother-in-law (a physical therapist's assistant) for hip exercises and went out with Ralph to pick up the machine that now dominates our second bedroom. Fingers crossed that this stuff does the trick and keeps my hip "in the flow."

Aside from those things, I'm also wanting to get off this bugger fast because it's the second immuno-suppressant that I'm on--keeping me one further step from returning to a normal lifestyle.

"Sub Rosa"

Finally. Yesterday I finally got back in front of the easel--the last time being sometime in January. It was just an hour or so, but I FINALLY managed to put the finishing touches on this painting. The majority of this painting has been done since October, but I wasn't quite satisfied with the final layout. It was missing something. While in the hospital, I was reading the Da Vinci Code and it gave me the idea for the roses. Not a flower I would have normally flocked to, but given the Mexican nature of the painting and what was going on under the roses, it seemed to be exactly what I was looking for.

The photography is a little wonky again (because it's just me taking it here in the apartment) but I am just so happy to have finished it that I wanted to post it sooner. I'll update the image as soon as I have a better quality one!

Like butter.

So, part of the whole GvH thing that I had going on over the past couple of months really took the pounds off. I've never really lost that much weight with any of the treatments that I've had in the past, but this time--good LAWD! I used to be about a size 10 before the transplant, and now I think I must be somewhere around a size 7. It's not a _tremendous_ size difference, I guess, but it just seems that way to me and my missing ass! I don't know if it will stay off, though. So, on Friday, in an effort to control weight re-gain and strength rebuilding, Ralph and I went out and ordered a treadmill. It was only my second trip out to a store since the transplant, and even though I wore a mask the whole time, it was just nice to get out of the house.

Sweet steroids.

Although, steroids definitely have some draw-backs to them--and I really WOULDN'T want to stay on them forever, the energy and appetite that I'm getting from being on Prednisone is impressive. Granted, it's a bit of a scatter-brained energy and a ravishing hunger, but if those are my only complaints right now, then I'LL TAKE IT.

Status of stuff right now: feeling pretty damn well--let's hope it keeps up, cuz I'm digging this high! ;-)

Home again, jiggity-JIG!

I got released from the hospital this morning, and WHAT a wonderful day it has been. The sun was shining beautifully bright and, thanks in part to the very effective sleeping pill last night, I had pretty good energy today. Granted, I didn't do much but sit on the sofa browsing through magazines and email that have arrived in the past two weeks since my induction into the world the transplant ward, but I felt great.

It's good to be home. :-)