Getting back in the swing

So, I've been home now for almost a week. I haven't had much of a chance to do anything, as I am still trying to rearrange my schedule for taking the new medications that my docs have prescribed. Some have to be taken with food, some with meals, some at least an hour away from any food, some 1-2 hours away from each other, and some take an hour to take! Given all those requirements, I think I've finally worked out a plan, but it's taken a few days of trial and error to determine the best combination. Some of these meds also cause dizziness and drowsiness, so when I haven't been trying to figure out when I need to eat or ingest medicine, I've been in a bit of a fog--creatively, at least. I've been reading a lot, but I haven't quite gotten enough energy to get me back in front of the easel yet. Hopefully soon, though, because I really, really miss it.

Home again finally!!

Yesterday afternoon, I finally got released from the hospital. They had one medication that had to be administered for 14 days, which is why I had to stay in a little longer than originally estimated. What a fun time that was! For a few days there, they moved me to another floor because a bacteria was growing on my petri dish that could have meant that I had tuberculosis. Fortunately, a couple of days later, it was clear that I DID NOT have it and they moved me back to the previous floor. Phew!

Aside from that, it was pretty much two weeks of not being able to get enough rest and eating terrible food. How amazing that when you need to heal up the most, they take away the two biggest ways to help your body--rest and nutrition. I wish there was a way to select an organic option for the food, even if I had to pay extra for it. Oh well, I'm home now, and it feels great. It was nice just to wake up next to Ralph again. :-)

Back in the hospital again

On June 11th, I had a low-grade fever again, and the docs decided to take me back into the hospital. It's not as bad as it sounds, but I'm still not home yet (and I won't be) for a few more days still. They are treating me for one fungal infection and one bacterial infection. Most of the meds are IV administered, which is why I need to stay here for now. They anticipate that I'll be out on Friday (the 22nd). Fingers crossed.

By the way, remember that field image that I typed about earlier? I finished the sketch of it and here it is. It's still not entirely the way that I want it to look, but at least you all can see an idea of what I want to be producing--and the closest thing that I feel I have produced that is "my voice."

I don't like breakfast in bed

I'm not sure why there seems to be this memory or idea in my head that breakfast in bed is some sort of special treatment or luxury, but after having just spent the last four days getting breakfast in bed in the hospital, I have to say, I'm not that keen on it.

Saturday, when I woke, it hurt to take deep breaths. Fearing that it was a clot that had broken loose and gone to my lungs, I called in. They took me in and ran ALL SORTS of tests, including a broncoscopy (not the scary procedure I described in the previous post--it was the same thing that I had done in October of last year). They switched up some of my meds and didn't give me my next dose of chemo. They seem pretty certain that it is a fungal infection, and it wasn't a clot (although, they explained that it would have presented itself the same way). So, now we wait to see what grows from the samples they obtained. In the meantime, I am able to be home again, which is nice. Really, hospital food--do they really think that stuff is at all good for you??

When it gets hard, a memory takes me through.

That whole thing with the potential outcome of that procedure has seriously scared the bageebies out of me. I think I've made it pretty clear to those who would have to make the decision, but I prefer a DNR (do not resuscitate). I don't want to live by machine. So, that could have easily been the end of the road for this girl. Granted, the procedure doesn't look like it's going to happen now (thank GOD), but just the possibility that this current situation could get worse really freaks me out. I'm holding onto my fight with the hope and belief--however small it feels sometimes--that I am GOING to get better. That some day, I can look back on these days and give myself the comfort of knowing that it has passed.

There is one image that I'm holding onto, and it's really been the only thing that makes me believe. By now, I'm sure that you know that I have a lot of dreams (or some would say that I just remember more of them than most people). When I was rediagnosed in 2005 (before the most recent transplant), I was having a hard time moving forward mentally. I remember praying for some sign so that I would know or have some idea how it would all go over. I don't remember if that was that night or a few nights later, but I had a dream in which Ralph and I were walking, holding hands. We were, sort of, window shopping in a mall. As we turned a corner, I saw that I was 5 months pregnant. It felt so real. I woke up crying and happy. That image, that future memory, that sense of happiness is what I hold onto. When everything seems like such a struggle, that's what gets me up, makes me eat when I'm not hungry, makes me keep trying to get stronger daily.

Reality

I met with the lung doctor yesterday and it looks like we probably won't be doing the broncoscopy/biopsy. Apparently, there's a pretty high risk that I could end up on a ventilator and in a nursing home after the surgery, because my lungs are already compromised. He also said that he didn't think that we would gain that much more information about my current situation (and treatment for it certainly wouldn't be different either). It could only confirm what they already suspect (slight infection on top of GvH in the lung). So, after hearing that, I have to say that the trade-off is SO not worth it. I don't think that I could handle this situation getting any worse, and being on a ventilator and in a nursing home....well, sunnuva gun. Let's just say, I feel like I dodged a bullet by having a doctor who had the presence of mind/education to suggest not having this procedure.

Next steps for lungs...

Today, I had my appointment with Lister. We got the results from a CT scan which showed something they call "BOOB" on my lungs. It's typical of GvH for this to show up, and they are apparently nothing additional to be worried about. There is a possibility, however that it's an infection (like a fungus or bacteria) or that it's Hodgkin's presenting in the lungs (although this possibility seems very unlikey according to Lister and the radiologist who reads these reports for a living). In order to figure out what it is, he wants to do a lung biopsy and a broncoscopy, probably sometime next week. Not fun for me, but at this point, I really will do anything to breathe better. And GET THIS, if it IS an infection that is showing up on there (rather than just more BOOB from the GvH) then they theoretically could give me a pill and I'd start being able to breathe better. Wouldn't that just be the miracle of the year?! I honestly don't think this is it. I can imagine that I have a small infection, and that treating it will help me breathe *better*, but I don't get the feeling that it will clear up my breathing problems completely. I think that's going to take some more substantial treatment/attention/time/etc. Fingers crossed and prayers shouted!

Finding my voice

As I've said before, I'm currently working on a series of floral pieces. There's been a lot of experimentation with this series, mostly because I had been trying to figure out how to make the flowers interesting to me. Sure, representing flowers is tricky all on it's own, so just learning how to paint them normally is the first challenge. But, I didn't want to just render the flowers in paint, from a photograph. I have always felt that it's cheating a little to do it that way. Plus, I can hear my mother in the background saying, "Why not just take a photograph instead and be done with it?" On the other hand, I didn't want to produce something "edgy" just for the sake of not wanting it to look like a photograph. So, then I'm kind of left standing somewhere in between.

I've been going around in my head about this part ever since I started painting a couple of years ago: what is my "style?" Am I a figurative painter? Am I a photo-realist? What's the difference between illustration-like work vs. fine art? The questions have been abundant and I've gone back and forth on how I feel about the stuff that I have produced. A couple of nights ago, however, I produced something that changed my perspective on "my art." I painted this field of flowers. It was an image that "came to me" one morning, upon waking, about 3 weeks ago. So, it was interesting for me to produce this piece, because there was no photograph to reference, only the memory of a feeling and a visual in my head.

The revelation occurred to me as I was painting the field of flowers. I *wanted* it to look a certain way. To feel a certain way. I wanted it to be something that I was very comfortable with. Something that _I_ would want to look at on a daily basis. I put things in the composition that I would like to see and painted it the way that I thought it wanted it to be, rather than what I thought it should be. The revelation was this: paint/draw/etc things that somehow could be with me for a while and something that I like to look at. This may sound obvious, but it's really not. It's so easy to just produce what you are able to, or to produce what others may like, but it's much harder to figure out what you personally want--out of everything that's out there.

Of course, I figure that you must be curious about this field looks like, but you'll have to wait a little longer. There's something missing in the composition, still, and I don't want to ruin the first impression of it until it's done. Soon!

Life Goes On

It's funny, because I'm not sure what I want to say tonight. There have been a lot of changes lately--friends moving away, others starting families, some marrying, some divorcing. Everyone seems to have something in their lives--their own drama, if you will.

This morning I found out that a friend of mine is getting divorced from her husband with whom she has been with for over ten years. Her wedding was the first of my friends and her marriage is the last one that I would have anticipated to end. I've spent the day thinking about this and remembering that no marriage is created equal and that things aren't always what they seem. In times when things are going so rough in life, it still goes on. Sometimes the fact that it just continues on feels wrong. Like everything should stop until things are okay again. Other times, the fact that it does still go on, forces you to get back up and keep on going with it.

Tubthumping

Remember this song? It was popular when I was in junior high in that small town in New Hampshire. I heard it again today when I was doing my daily treadmill walk. The chorus seemed so right:
"...Sings the songs that remind him of the good times, songs that remind him of the better times...I GET KNOCKED DOWN, BUT I GET UP AGAIN. YOU'RE NEVER GOIN' TO KEEP ME DOWN!"

I'm turning this up LOUD. I can hear nothing else above it right now.

Chemo #13

Please, God, let me breathe normally again.
Please, God, let me breathe normally again.
Please, God, let me breathe normally again.
Please, God, let me breathe normally again.
Please, God, let me breathe normally again.
Please, God, let me live normally again.
Please, God, let me breathe normally again.
Please, God, let me breathe normally again.
Please, God, let me breathe normally again.
Amen.

My Google Horoscope for today...

"Your fate may be in the hands of others now, for events seem to take their own course of action no matter what you do. But don't give up; you can impact your future by developing a healthy sense of detachment. Making too much out of nothing can set you up for unneeded disappointment. Don't worry if you aren't seeing the results you desire yet. Give yourself time."
Thursday, May 3, 2007

Picking paths

As I previously wrote, I'm currently working on some floral subject matter for painting/drawing. It's interesting. I still love people as subjects, but I've felt that I need to make sure that I feel comfortable with or at least try to perform in other types of subjects. As I have done this, I've noticed that it's like a "Pick Your Path" book. Remember those things from childhood? "If you think Susie will choose to walk home, go to page 30" etc? Well, I kind of feel like what I'm doing now is like that. Each thing that I produce, I can see spinning off into a more indepth study. Like, the other night, I decided it was too cold to open the windows (for proper ventilation of the acrylics) so I pulled out my watercolors. I started painting a flower. The overlapping of the petals of the flower made me think of stop-frame sequences of motion or activity of an object. There's a whole area that I could experiment with on that--not to mention the idea of using the actual pigment to highlight certain areas of the motion that I believe to be more important. I'm not sure if that makes any sense here, but I think it's got some real potential.

However, I'm still in the middle of producing the floral stuff...and I have at least 4 other paintings (non-floral) that are pacing around in my head [impatiently] waiting to be produced. Since I still only have a few hours of actual painting/energy a day, it takes time to get onto the next project and I find that I have to pick a path rather than try everything. It's interesting stuff, but it takes time to do it well.

Yeah, it didn't stay...

So, I think the better breathing lasted for about a week or so--again nothing substantial, but it was a slight improvement. Then, Lister cut the steroids a little (now I'm at 20 or 15 mg daily, alternating days), and it seems like it's getting bad again. Argh. It's just so annoying.

Also, that day when I had my appointment with him, I asked about being put on oxygen--at least while I'm putzing around at home. So, they tested my levels, submitted a report and later that day a man came by with tanks and tubes and such. At first, I was really uncomfortable with the whole thing--mentally it made me feel like things were worse, but a funny thing happens with desperation. If you can breathe better but look silly, you'd be surprised how quickly pride gets tossed out he window.

Thank you, GOD!

Today it seems that I've had better breathing. I'm not sure why exactly, but I'm VERY happy that it's here. Usually the last days right before a chemo are the most difficult for breathing, and since I'm due for my next chemo on Friday, it would normally be pretty prohibitive by now. HOWEVER, today, I managed to do quite a few things around the house and EVEN got out to the art store on my own. I've been doing some floor exercises (in addition to my normal treadmill sessions) to build up the muscles in my arms and torso, so maybe that is helping to strengthen the muscles that can pull open my lungs. Or maybe, I have enough prayers into God that he finally took mercy on me.

Meet my donor!

Her name is Jackie and she and I met this past weekend at my mom's place in Maryland. We had dinner and chatted up each other on what we had both done for the process as well as other events in our lives. She came with her husband, Andrew, who had an amazing magnetism for my mom's cat, Stanley. Within moments of sitting down, Stanley was all about getting as close to Andrew as possible. It was absolutely adorable! I also created a painting for her--my first floral. Here's a picture of it as well as an image of Jackie and I together!

Pushing it

So, the breathing is closing up again (as usual when I'm about a week after chemo). However, in some way, it seems not quite as bad as it was in the days before this last chemo. It's still pretty terrible, but I at least wasn't completely discouraged in my efforts to get out of the house today. I swung by the art store to pick up some more canvases, because it's the last few days of a sale that they are having. Inspired by spring and taking a little break from figurative work, I'm working on some florals and other objects real up close. I finished the first flower painting today and I'll be giving it to Lady X this weekend when we meet for the first time. I hope she likes it.

Airhead

I have had a better breathing day today. I had my 11th chemo yesterday, and it has given me a bit of my breath back--at least for a few days. It's amazing how much better and like myself I feel with just a little bit more air in my lungs. Don't get me wrong, I'm still a breathing pretty heavily, but everything is just a little bit easier. I actually had a conversation with an old friend on the phone today for almost an hour and a half and I didn't get winded nor tired afterwards!! I even had enough energy to do the fastest and longest treadmill session than I have for months! Oh, please God, let me keep this air!

Alive but not living

I've had a little bit of a lower period lately (mentally). I'm just getting really frustrated with these breathing issues. I know I sound like a broken record, but it's just that it doesn't go away. It's amazing how limiting it is and how much it's cramping my ability to get better. It's hard for me to build up strength in my muscles, because exercising is near impossible. And as far as other activities, well, those are pretty impossible too. Actually, I can try to do them, but it starts to get a little scary when I can't get enough air into me. I actually start to get dizzy sometimes when I'm just walking out to the car. Not good.

The thing is, I wouldn't mind it nearly half as much if I knew that I had to endure it for "x" [time period] more. Even if it were a full year or two. Then, I would at least have something to look forward to. I could tell myself, "Just 10 more months until I can breathe normally again." BUT, I don't have that guarantee. I don't have any guarantee that it will ever go away. It could clear up in a matter of weeks (not likely) or stay as a permanent condition. It's completely unknown. That's probably what's most difficult right now--not knowing if all this suffering is going to be worth it in the end.

Entered

So, I did it. I entered a competition. It's an international competition, so I'm assuming that I have some pretty stiff competition. It's the first competition that I have entered since highschool, and I won't find out if I've placed until July 1st. The painting I submitted is "Sunday Morning" (the painting of my grandmother). I'm definitely curious to see what the judges think of it. Fingers crossed everyone!! :-)