So it's not the painting

After meeting up with Lister as well as a respiratory specialist, we have all concluded that painting doesn't seem to be making my breathing worse. GOOD. The breathing seems like it has gotten a little better over the past week, but I think that's more a result of a new inhaler they have started me on. With any luck, tomorrow, I start painting again.

It's funny how intimidating it can be. Just being away from it for a couple of weeks and I feel like my skills are slacking.

A little experiment..

So, now that the show is up and I have no impending deadline for paintings, I decided I would try a little experiment: stop painting for at least a week and see if my breathing improves at all. So, as of Friday of last week, I haven't painted--and it's been hard not to! I miss it already.

So far, I've noticed that it is a LITTLE easier to breathe, but mostly in the sense that my cough (that I've had for over a year) seems less phlegmy and persistent. I'm going to try to continue to not paint until I see Lister next Thursday. That will make it 2 weeks of healing/experiment time to see what effect it has. What a cruel reality it would be to not be able to paint after all this.

I'm hoping that if it IS the case that the paints have been irritating my lungs or making it worse in some way, that it is only because I'm still on the immuno-suppressants and that when I am able to be taken off them that I can go back to painting. My current daily pill consumption is still pretty full:
1 anti-viral
1 anti-fungal
1 antibacterial (2x weekly)
3 immuno-suppressants
1 blood thinner
multi-vitamin
flax oil supplements
calcium supplements

In the meantime, I'm brushing up on my drawing skills and catching up on my reading and napping. Anyone read something good lately that they would suggest?

Knew it could only last so long...

For those of you who don't know me personally, I've been on disabilty leave for the past year, unable to work. Today I got "The Phone Call" from my boss. "Unfortunately, as of the 31st of this month, we can no longer hold your position open for you."

You may think, "But, you can produce all these paintings! Surely you can work?"

Nope. Drawing and painting don't require me to move from my seat nor speak for extended periods of time (if at all). They are skills of an isolated person. And until my breathing issues improve, the docs can't take me off the medicines that basically require me to be protected from the germs of the hoi polloi.

To not want to return to the grind of a 9-5 job is one thing. To not be ABLE to...is another.

The show must go on!

So, my breathing issues have not improved at all in the recent weeks--in fact, it almost seems a bit worse. It's hard for me to walk down the hallway without getting winded. :-( I am seeing a respiratory specialist within the next week, so I'm REALLY hoping he's got a trick up his sleeve for me.

In the meantime, I had attended the reception for the first showing of a large group of my paintings, "Angles" at ModernFormations Gallery. Mom came up for it as well. Here are some pics that she took of the exhibit.

"Fertility"

Here is the next painting in the series for the Angles show. It's just a little over a week away! For those of you who think you've seen them all here and don't need to see the show, the digital rendition is never as good as the real thing. So, toss on those winter jackets and come on out next Friday night! :-)

Women's Work

I got into another show! I'll have a piece in downtown Pittsburgh at SPACE Gallery. The painting that will be there is "Breathe" which you can see here.

"Mother"

Here's the next for the woman's show. I started it back in November, but since I was so weak in December/early January I didn't get around to finishing it until recently. The first is the finished painting, the second image is what the painting looked like until just a couple of weeks ago when I went back at it.

Get this!!

So, Lady X (a.k.a my donor) and I have exchanged a few emails and I found out some interesting information...she currently lives just 24 miles from my mom's place in Maryland!! AND...she grew up just 19 miles from me in New Hampshire! She's the same age as my sister, so it wouldn't be surprising if their paths had crossed at athletic or other school events. AND...she works for a company in Maryland that has a local office in NH where my mother used to work a few years ago! CRAZY!

"Reflecting"

Here is the next of the paintings for the show. Since I've had some inquiries about my process, I figured that I would post some pictures of how this painting developed.

Es schneit!

It's snowing! It has been snowing off and on for quite a few days here in Pittsburgh. It's all just a little powdered sugar on the city with not much accumulation, but it's still very pretty.

As for me, much of the same. Still having a hard time breathing. Still kind of tired. Both yesterday and today, I almost made it through the day, when in the late afternoon, I was seized by the need for a nap. Both times, I thought it would just be a little cat nap of 20 minutes or so, and both times, I was out--drool and everything--for at least an hour.

Aside from that, Lady X (a.k.a. my donor) contacted the National Bone Marrow Program. She has signed a form to release her information and inquired for mine. I got the form yesterday. I'll fill it out this weekend and send it in. Ralph and I are placing bets as to where she lives. I'm guessing in the mid-west...something like Minnesota. Ralph thinks it's more like Texas. I guess we'll see!!

"Something you said"

Here is the latest of the paintings for the show in March. I won't be posting it to my art website until the show has begun, because I want to leave some things as a surprise. I'll continue to post the paintings here, though, since most of you who read this aren't in the Pittsburgh area. Enjoy the sneek previews! ;-)

Ha!

About a week ago, we ordered Chinese food and I got the following fortune, which of course made me laugh out loud. :-)

I remembered it today when my doctor told me that they found two clots in my left arm area. This means that I will have to administer shots to my tummy twice daily for potentially 6 months to thin my blood out. Argh. Come on, body, fix yourself already.

A little less sleepy

Finally, my body has begun to readjust to being without so many steroids in my body. I'm still on them (25/20 alternating days), but at least it's not quite as much as it was before. I still have the puffy bloated face from them as well as hair in places it shouldn't be and no hair where it should be. For instance, I have this little mustache. It's similar to what the boys in junior high used to leave on their face for a year before finally being convinced to shave it off. It's just on the sides of my upper lip, and not noticeable all the times, but for one who has never had to worry about facial hair--it's noticeable. Between that and the ungroomed brows that I was sporting, I was hairier than Ralph.

Some good stuff, though, is that the less sleepy state has finally allowed me to get back in front of the canvas almost daily, even if only for an hour or two. This is really important, because 1) it gets me off the couch and out of bed and 2) I've got just a little over a month until my first show of paintings. I lost the past month and a half from all that weakness, so now I'm trying to play a little catch up and fix the things that I did with my shakey, tired hands. Hopefully, I'll post the next piece here within the week.

A quickie

Today is Ralph's mom's 60th birthday. To celebrate it, Ralph's father offered to fly us both out to meet up with them in Berlin for a few days. Obviously, my current situation is not ready for traveling, so I had to stay here. Ralph and I both still thought it a good idea to send him along, so on Tuesday, he left for Germany for a week. I wanted to send birthday wishes along anyway and I thought it would be nice if I could do a little portrait of Ralph for her. Something quick and small. Between the fatigue, physical weakness, and the shaky hands (caused by some of the medications) it was tough to do. In the end, I finished it just in time and Ralph's parents seem have really enjoyed it. Here's a shot of it.

It's been a while, I know.

I haven't posted for almost a month--and what a month it's been. I think that the month of December was probably THE weakest that I have been physically and mentally. So many days passed without me even doing much more than sleeping, eating, walking (on the treadmill), sleeping, eating and sleeping again. I would sit sometimes after eating breakfast, for instance. Just sit with my eyes closed and catch my breath or just to let my food digest, and before I know it, an hour has passed. I feel like I've lost hours and thus days that way this past year.

Both my physical and mental states have gotten better over the past couple of weeks though. The mental stuff was mostly because progress seemed to be coming too slowly or seemingly not at all. There was one day, for instance, when I squatted down to pull out some tupperware from a lower cabinet. I got the tupperware out, but then I couldn't get up. I pushed on the floor with my free hand. I pulled from the countertop. I threw the tupperware onto the counter top and tried with both hands to push up from the floor. Nothing. I had to call Ralph in from the other room to lift me up from the floor. Talk about a seriously depressing situation. So, yeah. That was probably the lowest point. I haven't tried to squat down again (still a little afraid of getting stuck down there), but my strength has improved enough that I don't feel quite so feeble.

And I may do it again.

I saw Lister today. Over the next two weeks, my daily steroid consumption is going ot be cut in half. This is good (as long as the breathing and/or oher GvH issues don't get worse), but I am going to be *TIRED*. I may have to cheat a few more times with some caffiene, or I'll spend the entire day on the sofa. That may not sound that bad to someone else, but imagine that constantly, you have this chunk of time of your life just gone. Little concept of time and how long it's been since you've called that friend back. (This happens for weeks or months at a time.) So, I'm trying to see if I can at least be more dliigent about responding back to folks between naps! :-)

I'm really hoping that my body doesn't flip out (give me GvH) as I go off the steroids. The chemo is going to still knock me down every two weeks, but Lister tells me that if I can get down into the lower numbers of the steroids it will help other issues such as:
• I have extremely high blood suger (over 500 when normal is under 100)
• As a result of the high sugar, I have double vision in my left eye (especially after eating)
• Weight loss/muscle atrophy -- and not in the good way. I'm rebuilding as the steroids are being cut, but I have areas that have extra skin because there's nothing behind it. :-(

If I can get those guys out of the way while maintaining the progress we've achieved in the breathing, then I'd be a happy girl. It would be a nice birthday present. :-D

I Cheated.

Yesterday, I had some coffee and was actually able to get back in front of the easel for a couple of hours. I haven't wanted to start the whole caffiene ride (I have enough drugs in my system), that it would make me even more jittery, or that it would dry out my eyes even more. However, I did it, and I got some good awake time from it!! :-)

Sunshine in December

About a week ago, Ralph picked up some fresh fruit salad from the local grocery store. The fresh chunks of pineapple in there taste just like summer sunshine!!

Aside from enjoying the pineapple, I've been resting A LOT. I have not been able to paint, and only just today have I been able to pick up a magazine to read. Coming off the steroids combined with the chemo has left me pretty much out of ability to do anything but sit and rest (or lie down and sleep). I'm surprised at the amount of fatigue associated with coming off the steroids. I think it's also because there is a lot of rebuilding that my body has to do. I have lost a significant amount of strength (muscle) on the steroids, and I think that my body needs the rest to rebuild.

Here's something!

I woke up this morning feeling as close to normal as I have felt in a LOOOOOOOOOONG time. I was able to breathe through my nose, I had a good feeling of energy, my eyes weren'’t burning, and I wasn'’t shaking or coughing. It was wonderful. I just laid there in bed for a while enjoying the sensation and clarity of the drizzly Pittsburgh morning.

The eyes only just now starting to feel a little dry again, but that feeling this morning--I'LL TAKE IT! :-) It was so nice to feel what waking up feels like when you don't have all these issues waiting for you.

I don't care why--just make it go away.

So, I saw Lister today. We think we've pretty much gotten everything out of the steroids that we can get. Thus, we are cutting them down to 75mg daily (I was up to 100mg). However, I seem to be having a GvH (Graft vs. Host) flare up again--my liver functions tests are elevated (showing toxicity from GvH), my platelets are down, my gut is showing signs of being attacked, and my sugar levels are off the chart (from the steroids), and I'm tired as heck. Since this GvH flare up is occurring, and he's pulling me down off the steroids, they have to replace it with something. Guess what it is? A CHEMO. Apparently, I get to keep my hair with this one, but it's a chemical that will be administered through an IV starting immediately--like tomorrow morning. Needless to say, this isn't helping my mood.

I hate knowing that if I decide to stop taking the 16 pills that I take a day, I will be dead in a matter of weeks. This is NOT what it's supposed to be like when you're 28 years old.