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.

No Woman, No Cry.

So, today is a low day. I don't know if it's a factor of the steroids that I'm on (they can cause moodiness), or if it's the fact that I still can't function like a normal person. I'm tired of this. I need to hear that things are going to get better--even if they aren't. I try to be okay with the fact that it may just never get better, but the reality of that is really hard to take.

Realistically, today was better than I was even four days ago (at least physically). I actually got out of the house and was able to buy some books and other items that I've been wanting to pick up. Four or five days ago, I was holding onto walls trying to balance myself, like a toddler. So, there has been definite progress. The problem is this tremendous fluctuation. I mean, trying to stand and having to hold onto things, or every time I want to change my clothes, I have to sit down. It's really frustrating. And today, it's catching up to me.

I need to hear it. I have some songs that help me with it: Bob Marley & The Wailers' "No Woman, No Cry," Peter Gabriel's "Don't Give Up," and Nina Simone's "Ooh Child (Things are Going to Get Better)," but I could use some more. If you folks know of any songs that I can blast in my ears when I get like this, please pass along the titles.

Sunday Morning

I know it's Saturday morning that I'm posting this, but the title of this post isn't in reference to today, it's in reference to my latest painting. This one is also for the show in March, which now has a title of "Angles." The main subject of the painting is actually my grandmother. I chose her for a subject, not just because I wanted to document this woman in my family, but because I'm trying to represent the many roles of women for this show: mothers, friends, relatives, lovers, as well as self. Through the paintings of these women, I'm hoping to address such issues as beauty (quest for and question of), aging, sexuality, fertility, strength (physical vs. emotional), motherhood, and health.

Dreamer

Those of you who know me personally, know that I'm notorious for having strange dreams which I inflict upon any listening ear. I have been good--I haven't been recounting many of them lately. However, last night I had a dream that was so potent, I think I should share it.

I dreamt that I was a duck. I was swimming with another duck down, or rather up, a ramp. We were out for a leisurely “duck stroll.” Talking about stuff. Floating on the waters and paddling along with our webbed feet. Rather calming. I was saying how I had interpreted recent actions to be a sign of romantic interest in me. The other duck chuckled and asked what sorts of things gave that impression. It wasn't a mean chuckle, more like a friend. I started to give an example when we reached the height of the ramp. Our conversation stopped as I peered over the edge of the ramp to see how far down the jump would be to the river below. I nearly lost my stomach when I saw that the height was literally like a skyscraper! It was ridiculously far! I thought, “My heart won't be able to take that. It will be worse than the tallest roller coaster ride that I've ever been on!” I remember turning to the other duck and explaining my concern and stammering certainty that I wouldn't and couldn't take that jump and that I would have to go back down the ramp.

I thought about sliding down, but there was some sort of large boat starting up the ramp as well. With the sheer height and length of the ramp, I was afraid that I would slide right into the boat. Instead, there were little stairs on the sides of the ramp (like a flume gorge ride) and I figured I would just go down those. The other duck was neutrally in the background at this moment. Almost like saying, "Suit yourself."

At this point, I woke up, because I had to go to the bathroom.

And then I realized it. I COULD have made the jump. I was a DUCK. I could have just flown down. I was so scared of the jump that I didn'’t think of flying. I thought it was impossible.

Walking back through molasses

So, for the past few days the breathing has actually begun to get better. It's making me think that Lister might actually know what he's doing. ;-) At first, I was hesitant to post the improvement, because I was afraid I would jinx myself. Now, however, it's been about 3-4 days of marginal improvement. I figured I'd attempt it and let you all know that there is SOME improvement. It's still not completely fixed--it still feels like I'm drudging through breaths at times--but I haven't had the fish-out-of-water sensation that I had been having for the past couple of months. Of course, now I have less excuse as to why our laundry isn't done. :-P

Ho-Hum.

So, the massive increase in steroids last week didn't do what we had hoped. It's still really difficult to breathe. So, Lister has kept me up on the steroids and added two new meds (one anti-bacterial, and one anti-fungal). I think the breathing thing seems to be two-fold--part Graft vs. Host (GvH) and part infection (the cough). Given that it's still SUCH an issue, everyone involved (myself, my husband, my doctor, my boss, and my disability insurance company) thinks it's better for me to go back onto disability full time until this stuff clears up. Lister seems to think that he can have it fixed in 3 weeks or at least "markedly improved." I'm skeptical, but happy to hear him be so optimistic.

I have to say that feels like a bit of a relief. I've been trying to work part-time since September 1st and it's been difficult. It's hard to focus on designing a page layout when just trying to breathe is an effort.

This breathing thing...

...is getting really annoying (and difficult). It's making it almost impossible for me to perform basic activities (emptying the dishwasher, walking down a long hallway, picking up a pen on the floor). The docs up'ed my steroids even more now to 100mg daily, hoping that will do the trick, and ordered me back to see them again on Monday. In the meantime, they have ordered some sort of scope to head down my lungs tomorrow morning to see what they can see in there.

On one hand, I'm glad that they are taking a closer concern about this--it's been pretty bad for me. On the other hand, it would just be nice to not have to worry about this at all. We'll see. I know, however, that I could be doing a lot worse. I'm thankful for at least doing as well as I am.

Here's the latest in the health series, dealing with my breathing issues: "Breathe"

Finally up!

So, I bought the domain name back in JUNE, and this weekend, I finally got around to putting together a website of my work: www.stacyraegross.com. It's a simple site, but it does the job—for now. I'll probably have to re-evaluate it in a few months as more of the health (cancer treatment/recovery) series is filled out. I'm not sure how that work fits in with the other pieces I currently have up there.

The health series is progressing into a two-part series: half, self portraits and half, abstracts of meditation sessions. Actually, if you are curious, I put 2 of the health series paintings in with the images on the website (Bathing I and Bathing II).

I will still be posting updates of paintings and sketches here on this blog, but the new site is one where I will be able to give more information about them and have all the painting images in one place for folks to browse.

Re-education.

So much of what I'm doing right now seems like a complete re-education. I'm learning how to live again--what I want my life to feel like and how I have to live. Most of the things that I have learned (or thought were true) growing up about how my body handles food, weather, sleep, etc, I've had to learn anew.

With all the healing that I'm doing, there is just no way to make it go faster. My breathing thing is still a major issue. It seems that I just have to wait. It takes time for things to heal up and get stronger. All my life, I have been more of a fast mover, fast talker, fast walker, etc. All those things, I now have to do a little bit slower. I think it's a good change, but it's a hard thing to learn--changing my life speed + style so completely and penetratingly.

And painting, too, has been a re-education. For the past six years, I have been a graphic designer by profession (and formal education) and the world of fine arts is quite different. Not just the medium and expression, but the professionalism of folks within the field is completely different. I'm still pretty new to the Pittsburgh arts scene, and I've already been quite surprised at the differences.

Breathing (or rather panting)

So, it's been a little over a week since the operation for the tear duct. It went pretty well--especially considering what they did! They had to break some bones in my nose area to get to the tear duct. [Yikes!] The anesthetist was concerned about giving me too much sleepy stuff, because my breathing is still an issue. So, they gave me a "minimal amount." That translates to "Stacy will wake up in the middle of the surgery." And I DID. For the last 20-30 minutes, I was awake and becoming more an more cognizant. The area of my face that they were working on was completely numb, so I didn't feel anything. However, I could hear the surgeons singing along to the music, the beeping of the oxygen machine, and the bone being broken as I tried to will myself back to sleep. I know that a few of folks that read this are probably getting queasy, so I'll stop with the details there and just say that it was definitely one of the MOST SURREAL experiences of the past four years of the medical world for me. The anticipation of the surgery was a lot worse than the actual thing itself. I also am happy to see that the doctor managed to leave minimal scarring. I think it will be hidden by my glasses.

Another recent happening, Ralph and I celebrated our 1-year wedding anniversary this weekend. We went to a French restaurant about an hour outside of Pittsburgh. It was pretty good, although I think I'll have to think twice about getting lobster outside of New England. Although, still very good, it's just not the same.

Introducing...

This month, I have finally gotten around to changing my name. I've been meaning to do this for the past year (since the wedding), but for one reason or another, it never seemed like a good time. I decided to do it now, because 1) I realized that it's never going to be extremely convenient to change a name, and 2) I have been scheduled for a gallery show in March 2007 using this new name! That's right, in March of 2007, I will be have gallery show with local painter, Joana Ricou. We are still settling the details of the exhibit, but the paintings will have to do with women. Women painting women. I have started producing some paintings for this...here is the first:

Brrrr!

Boy is it COLD! I think it's about 60 degrees outside today. That's too cold for the first week of September, I say!

Nothing too much has changed on my medical front. My breathing is still an issue, but the docs are addressing it. Hopefully all will be good in a week. Other than that, the blocked tear duct that I referred to a couple of posts ago seems like it needs to be fiddled with. And by fiddled with, I mean operated on. Apparently, they have to go into the tear duct to unblock it before it gets infected. When the doctor said this to me, I just started laughing. What else can I say to that? The big event will take place on Friday. ;-P

The Mayor didn't make it.

Last night, Pittsburgh Mayor Bob O'Connor, passed away. :-(