Mercy has ben given to me today and I feel pretty damn good. My breathing feels a little more under control (I was actually able to do some yoga today--something I haven't been able to do for over a year and a half!!), my energy has been good, and I was able to read about 70% of a normal sized paragraph of a magazine (with the help of strong reading glasses and a magnifying glass). STILL.....I'll take it!!!!
If this is what my thirties are going to be like, I think I'm really going to like this decade. :-) (Cue up Annie singing, "I think I'm gonna like it here!")
Monday, December 31, 2007
Tuesday, December 11, 2007
Faith and hope
Lately, I've started watching that daytime show, The View, and I must say that I really like their segment called, "Hot Topics." Yesterday, they had a bit where Whoopie asked a guest if she still had hope that something was going to happen to her. Whoopie asked, "Is there a time when faith/hope becomes denial?" I pauseed my TiVo and thought about this. This is what has actually been bothering me lately. I've had this hope all along that my lungs are eventually going to get better and that I will get better, with only the occasional doubt that I won't. There are some of those lower days when I wonder if I'm just not accepting the fact that I will never recover and, in fact, it might only get worse. What keeps me going is the hope that I WILL get better, but obviously, I really don't know either way. At what point does hope become denial?
Saturday, December 08, 2007
Here's looking at you, kid...
I have some GREAT news. My vision is improving!! We have confirmed objective measurements from my neuro-opthamologist that show an over 50% increase in my vision! I went from having 20/200 vision three weks ago to testing at 20/100 yesterday! YAYE! Also my visial field test showed a reduction in dimensions of the central blur spot as well as my color sensitivity tests are more accurate.. I am SO relieved that it is starting to heal up. I think it will still be at least a month before I can drive or read something (without the help of multiple tools), but HEY, I'll take it. I'm already jumping at the bit (that's the expression, right?) to get back to apinting. It's been so frustrating to not be able to produce anything during these past few months. Ralph says, to sketch them down so that I can paint them wehen I can see again, but the problem is, if I can't see to paint them, I also can't see enough to accurately sketch the concept for myself. :-/ So, I'm really looking forward to seeing again! (hehe...get it?)
Friday, November 23, 2007
Some improvement
Hello all...the situation is still pretty much the same. I still have a hard time breathing and seing. :-(( It's been a pretty low fall because of that. For a while there I was just waiting for the vision to come back. I spent most of my days sleeping the majority of the time, because I figured "What's the sense of getting up if I can't see what I'm doing anyway?"I think that is the most helpless and useless and hopeless that I have felt in my history of this illness. On top of that, Ralph and I picked up a cold, so that just made me even more tired. Fiinally, after going to my regular doctor appointment[ in a wheelchair(because my breathing was SO poor and I was so tired) I decided I have to fight again. Now, I am proud to say that I am nearly off the oxygen, I'm walking on the treadmill daily, and actually doing some painting. The painting is not of the beautiful kind, but more of functional, subjective testing for my eyes' conidition of the optic neuropathy. I started about three weeks ago, painting lines of 1 inch diameter circles on pages of a watercolor paper bock. I went at it with the goal of trying to track my visual acuity and color perception on a week by week basis. So far, there have only been three weeks' worth of circles, and I can't se too much of a difference (because I still can't focus around the giant blur spot in my central vision), but Ralph tells me that he can notice a change between them. I'll take that as a positive motion and hope that it only continues!
Sunday, October 07, 2007
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.
Sunday, September 02, 2007
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. ;-)
Thursday, August 30, 2007
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?
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?
Tuesday, August 28, 2007
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!
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!
Wednesday, August 15, 2007
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!
Wednesday, August 08, 2007
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.
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.
Monday, August 06, 2007
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!
Knock on wood everyone!
Thank you for your prayers!
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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! :-)
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! :-)
Sunday, August 05, 2007
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.
Tuesday, July 31, 2007
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!!
Sunday, July 29, 2007
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.
Sunday, July 22, 2007
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! ;-)
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! ;-)
Tuesday, July 03, 2007
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.
Wednesday, June 27, 2007
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. :-)
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. :-)
Saturday, June 16, 2007
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."
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."
Tuesday, June 05, 2007
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??
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??
Friday, June 01, 2007
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.
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.
Thursday, May 31, 2007
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.
Thursday, May 17, 2007
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!
Tuesday, May 15, 2007
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!
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!
Sunday, May 13, 2007
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.
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.
Friday, May 11, 2007
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.
"...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.
Friday, May 04, 2007
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.
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.
Thursday, May 03, 2007
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
Thursday, May 3, 2007
Wednesday, May 02, 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.
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.
Monday, April 30, 2007
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.
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.
Wednesday, April 18, 2007
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.
Tuesday, April 17, 2007
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!
Wednesday, April 11, 2007
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.
Saturday, April 07, 2007
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!
Wednesday, April 04, 2007
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.
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.
Wednesday, March 28, 2007
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!! :-)
Sunday, March 18, 2007
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.
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.
Thursday, March 08, 2007
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?
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?
Monday, March 05, 2007
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.
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.
Saturday, March 03, 2007
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.
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.
Tuesday, February 20, 2007
"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! :-)
Saturday, February 17, 2007
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.
Wednesday, February 14, 2007
"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.
Tuesday, February 13, 2007
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!
Friday, February 09, 2007
"Reflecting"
Friday, February 02, 2007
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!!
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!!
Sunday, January 28, 2007
"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! ;-)
Tuesday, January 23, 2007
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.
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.
Sunday, January 21, 2007
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.
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.
Thursday, January 11, 2007
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.
Wednesday, January 10, 2007
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.
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.
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