Not looking so good

Hello all...I know it's been a REALLY long time since I have written. I have been afflicted with yet another health problem. In addition to the cataracts that I had in both eyes (and that have both since been operated on) I also developed optic neuropathy from one of the medications that I have ben taking. Optic neuropathy is that test that the doctors give you with all those colored dots and the number with the colored dots in the middle somewhere. Normally, the number is pretty easily distinguishable, but when you've got ON ( as I am going to call it) it's not so easy. It's kind of like having a high contrast version of vision with film grain over everything and a good-sized blur spot right in the middle. Reading, writing, drawing, painting, and obviously driving have been completely out of the question. For the past four weeks, I have been essentially legally blind. They say that it can take weeks to months to leave the system and go back to normal. So far, it's been 4 weeks with little if any improvement. I'm learning what it is like to exist by touch, scent, and hearing. I can still see things, but not enough to paint or read most things. In fact, I'm currently using my memory of the keyboard to write this entry as well as mac's text reading function to listen to it again before publishing. I'll keep you all updated on the situation, but I'm afraid that my postings will be more sporadic until there is a greater change.

Back in the day

While up in New Hampshire last week, I rummaged through my grandmother's collection of pics from the cabin in an effort to collect more source material for another series in the special projects section of my painting website. I came across this picture of me with some of my cousins and I loved it. It just made me smile. The blonde on the left is my sister, Kelly. The giggly boy on her lap is my cousin Jason. That's yours truly in the middle next to my cousin Chris holding Jason's brother, Jared. I'm guessing that I was either 10 or 11 in that picture. Ah, I can almost feel the soggy bottom of that bathing suit again. ;-)

CATARACTS!

Holy Bajolllllbie!! I went to the eye doctor yesterday to get an eye check up. I'd been having a lot of conrast in my vision as well as a kind of blind spot effect. The wierd thing was that the blind spot didn't seem to stay in one place, so I wasn't that certain that there was one. (Does that make sense?) In anycase the doc took a look at me yesterday and announced that I have cataracts in both eyes and they will have to operate. On two separate occasions. They like to give one eye time to heal up before going in for the other. Here we go again!! ;-) I know that the surgery itself should be fine--they usually make sure that you are pretty darn sedated....it's just the thinking about it that gives me the willies.

He says that afterwards, my vision may be better than before the cataracts, but I'll probably need bifocals. He offered to change my vision from near sighted to far sighted, but I declined and instead asked for x-ray vision...no dice. Can I at least stream the internet in there?

Vacation

Last week Ralph and i spent some time in New England again. (I apologize to all those that we didn't get to see this time!!!) The vast majority of the time we were up on Welch Island again. It was a bit nippy, but beautiful as always. Here's an image of the view from the deck. AAaaah. :-)

I came back to Pittsburgh to find a new medication piled onto my current load. I started taking it yesterday, and it has already left me a bit loopy and droopy. They say that part of the side effects should go away within 1-3 weeks as my body gets used to it...I certainly hope so!!
There's more to update you on, but I'm seriously having to concentrate too hard to post this part already, so I'll have to post the rest a bit later!

Finally added...

So, I finally got a few of those watercolor flower pieces done and put them up on my painting website! Check 'em out and let me know what you think!

Oh SO gratifying...

About a month ago, it occurred to me to apply for a handicapped parking pass for my car. With the difficulty that I have to just get to the store, it's been hell to find out that I then have to treck across the parking lot. It turns out that I qualified for it on a few counts, but the winning reason they gave me the pass was the fact that I'm on oxygen (portable, liquid oxygen) when out and about. You'd think, then, that the parking enforcement troops would know this is one of the reasons for a handicapped pass....however...

Tonight, I got to use the pass for the first time. Ralph and I headed over to Shadyside (a little shopping neighborhood of Pittsburgh) to pick up a gift for a friend and get some dinner. We had just put the pass on the mirror (it's a plastic pass like a pass for a parking garage) and gotten out of the car when a meter maid was approaching. As I'm puffing away on my portable oxygen container, she says, "Uh, you're going to have to move your vehicle."
"Why?" I asked.
And she said, "Well, because it's in a handicapped spot and your not."
"Ha! Who are YOU kidding? I AM handicapped. I have the pass on the car."
"Oh! Yeah, I didn't see that before."
"Uh-huh."

Boy, did that feel good. Back off SISTA--I'm entitled to a little nice treatment, even if it is only in the form of a closer parking spot.

GOOD NEWS!

Today I got the official word from Lister (my oncologist) that I am in remission. This time period is currently the longest stretch of time when I have not had cancer since first being diagnosed 5 years ago. (Each time it came back within 1 year of being treated--currently it's been 1.5 years since my last occurrence!)
Knock on wood everyone!
Thank you for your prayers!

Flower power

Since I was in the hospital in June, I've been a little more cautious in regards to getting back in front of the easel. Even though we've determined that it's not the paints causing the breathing problems, I haven't wanted to push the issue until I felt that my lungs were cleared up of the infection (at least a bit) and the weather was a bit cooler to allow the windows open while painting. Instead, I've taken to watercolors (an even LESS offensive medium to my lungs). I've had to relearn a bunch of the techniques and methods that I haven't used since I learned it back in highschool.

I've been exploring the idea of symmetry in nature and mixing that with some of the characteristics of watercolor. I haven't put them up on my painting website yet, because I'd like to have a few more done before I add them. However, here I'll post a sneak view...this one is my favorite so far! :-)

Something I love about Pittsburgh...

...the thunderstorms!! We never got that many up in NH, and I remember being surprised at the frequency of them here. They are so much fun, and it's so nice to fall asleep at night to the sound of rain on the window sill.

At least mine seem to be working

So, they switched up my meds a little about 2-3 weeks ago, and since then, I can definitely say that my cough has gotten better ( A LOT less frequent and laborious) and my breathing is a little less debilitating. Granted, I know I still have a long ways to go, but BOY DOES IT FEEL GOOD to see something making progress!!

Harsh

I just saw a Dateline segment on tv tonight about companies that are making counterfeit prescription drugs and selling them off to patients around the world, including the U.S. One specific example they found was a drug called Procrit. I took this drug back during my first round of chemotherapy back in 2002. From what I remember, it's a red blood cell promoter, so it tends to give you some more energy and help you recover from the effects of chemo a bit quicker. They had a family whose mother had taken Procrit during her battle with breast cancer and found that it gave her a great deal of physical and mental strength to get through the treatment. At one point, the drug didn't seem to be working as well, and the family figured that it was the cancer starting to overcome her system and figured there was nothing they could do. It wasn't until a nurse at the facility later determined that they had been sold fake medicine that the family found out. I heard this tonight and I must say that I was horrified. I mean, I saw the title of the segment, so I knew what they were going to be talking about. But then I understood that what they were actually doing was rendering these medications completely useless. A doctor treating a patient might then decide (when the patient shows no response to a medication) to put them into further treatment (additional drugs) or higher quantities of the same in hopes that it will eventually be effective. My thought on these people: they should be burned. Not just the death penalty, but burned. Sounds harsh, I know and I'm a little shocked that I could project that cruel of a destiny on someone, but that was honestly my first reaction to that news.

Recovering

It's been weird lately. I think it's a combination of the antibiotics and antifungals that I'm on, but I don't seem to have all my wits about me lately. I'm always kind of tired, or distracted. Some days are better than others, but I think it's not quite normal. The weird part is that I can't quite figure out how it doesn't quite feel totally normal. I hope it evens out soon though.

In the meantime, I have finally gotten back in front of the art desk. Since the weather has been soo hot here in Pittsburgh, we've been keeping the windows closed and the air conditioner on. That means, I'm not doing any acrylic work at this time. It also doesn't quite seem like it's the season for it. I've been working in watercolor, which given the temperature and sunniness of the outdoors, seems more fitting. I'll post some of the work I've been doing soon.

In the meantime...I'm off to read the new Harry Potter! ;-)

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!