And I may do it again.

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

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

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

I Cheated.

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

Sunshine in December

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

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

Here's something!

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

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

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

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

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

No Woman, No Cry.

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

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

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

Sunday Morning

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

Dreamer

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

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

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

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

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

Walking back through molasses

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

Ho-Hum.

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

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

This breathing thing...

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

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

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

Finally up!

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

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

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

Re-education.

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

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

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

Breathing (or rather panting)

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

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

Introducing...

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

Brrrr!

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

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

The Mayor didn't make it.

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

This week has been crazy!

Between the breathing issue (and test), the PET scan, and a visit with an eye doctor for a blocked tear duct, I have spent A LOT of time going to appointments this week. I hoping that all will be well soon, but it looks like there might be another rough patch ahead. In the meantime, here are some sketches from the various waiting rooms.

Medical update...

I had another appointment with Lister today. I finally got him to realize that this breathing thing is a real problem. (I'm still having a hard time breathing while performing simple daily activities). He has ordered a breathing test for me tomorrow morning. I think it's related to one of the meds that I'm on (CellCept). It sort of feels like the shortness of breathe that I was feeling back in late December/early November.

Since I've also had a bit of chest pain (in the traditional tumor area) he has also scheduled a PET scan for me this week. Unfortunately, though, I'm already scheduled to start working again (albeit part time, from home) this Friday, September 1st. So, if they find any cancer, I'm not sure what the plan would be to tell my boss. :-/

Instead of waiting a month to see me again, he said he wants to see me next week to see if the antibiotics he prescribed today help the lungs, and what the results of the two tests show. I'm pretty sure that the cancer isn't gone, but hopefully, I'm wrong.

Home again. (N.H.)

This time I actually have a good excuse why I haven't posted for a couple of weeks--I went home to New Hampshire. Ralph and I went up last week. We got to hang out with family and have a little retreat up at the camp. For those of you who don't know the "camp" story...back in the 1960s, my grandparents bought some land on a Welch Island in Lake Winnipesaukee, in New Hampshire. About 12 years ago, they sold it to a wonderful family with 6 kids. They have always been very communicative with my grandmother and always offered for us to come and visit. This summer, I finally took them up on their offer. So, last week for 4 days and 3 nights, Ralph and I had a little retreat. No computers, no phones, no tv, no radio--just water, reading books, resting on the hammock, and sipping tea on the dock. We had glorious weather, calming views, and some really great relaxing days. Here are some pics from our stay on the island:

Breathing

Hey everyone...sorry it's been a bit since I've posted. Nothing too drastic has changed--just some breathing issues. I seem to have some fluid in my right lung (don't ask me how it got there), and it makes me short of breathe often. It's mostly just really annoying rather than actually debilitating. It would be worse if I had to work or leave the house on a regular basis, but since I'm still home on disability, a lot of my time is sitting down and walking only the distance of my condo. The catch is that Lister wants me to go for long walks (minimum 30 minutes) at least every other day, if not daily. But when it's hard to breathe, it's hard to be motivated to get out in the 90 degree humid heat of Pittsburgh for a walk. I know, however, that the more I walk, the better my body will be, so I go. :-)

Other stuff that's happening: I'm still painting like a mad woman. I have actually finished three more paintings that I haven't put up here. They are part of a series that I am doing about the whole "cancer experience." I haven't posted them yet, because I wanted more of the series complete before I showed any one piece. Alone, they are still interesting, but I think they make more sense in the context of the series. Hopefully, I'll have enough of them to post them within a month.

I'm also trying to get enough paintings together to put them up on a website. It's a little tricky, because I'm not sure how I want to organize them--and if I have enough to separate them into categories. In any case, I'll keep you posted. (Get it?!) :-p

currently without title

In case you are curious...

I got another letter from my donor. I actually got it about a month ago, but I didn't think to post the info here until today. She wrote:

"May 13, 2006
Hello Donee,
I received an update today that said you were doing well--which is great news--that makes me happy! I love to hear updates + hope that some day I will get to meet you.

Thank you for the letter with some additional information. It was nice to get to "know" you a little better. It sounds like you are really creative. The most creative thing I can do is crochet + only basic thing like the scarf I made you--I would love to have more time to knit, crochet + sew--but life does not leave much idle time. I also had no idea who Friday Kahlo was--had to look her up on the internet. Very interesting person.

Here are a few details about myself that I think I can disclose: I am 32, almost 33 (yikes!) female. I have been married for almost 12 years--yes, married young to my college sweetheart. He's a great person + manages to keep me sane + have a gentle heart. I have one son who is 8. I adore him. He is a wonderful little boy who makes me proud every day. He keeps us very busy.

My profession is all in the accounting/finance world. I currently am an internal auditor for a large company. This job keeps me very busy + I travel about 50% of the time. This Sunday, I leave for the UK + Sweden--something you would probably enjoy. Most of my travel is domestic. While I enjoy the job, at times I miss home.

In my spare time, I enjoy running--mostly to chat with my large group of running friends, all women--biking, swimming, rock climbing, hiking, etc. I love the outdoors--although I'm am a fair weather camper! In my previous life/profession, I was in sports management, so I guess you could say that is my passion--not the finance world--but the finance world pays the mortage!

I hope this letter finds you well + I hope to hear from you.
I think of you often + pray for you.
Until next time--
Hugs, Yar Donor."

Sunnuva ------!

And now dooce!

Breathing with one hand to my mouth, in shock...

Part of the whole Pittsburgh All-Stars Project was a press conference/artist's reception with Pittsburgh Mayor Bob O'Connor, on Wednesday of last week. I attended it as there didn't seem there would be too many people there. However the next day, I thought I may have put myself in jeopardy, because Ralph told me that the mayor had checked himself into the hospital with flu-like symptoms. Of course, I had just shaken his hand the day before. Then there was word that he actually had an ulcer, was treated, and released. Today however, there was a different story.

And the sad thing is, I know his treating physician. He's a good and very intelligent doctor (if I couldn't see Dr. Lister, I would have been with him: Dr. Stanley Marks). I say it's a sad thing not because his doctor is Marks, but because I have such knowledge about the hematology oncologists in Pittsburgh.

I can't help but feel...I don't know. Sad? Angry? Scared? What is going on? What's with the lymphoma in Pennsylvania? Pennsylvania Senator, Arlen Spector was also hit (last year). Is it just a coincidence? I don't know, but I can't help feel like I have to get the hell out of here.

Since I haven't posted for a while...

I figured that I SHOULD. ;-) Unfortunately, though, there isn't much to update on. With the appointments with Lister spread out to every 3 weeks, nothing (medically at least) happens between that time. Which is GOOD (don't get me wrong), but there isn't as much to report on as there was previously.

In the meantime, I have been keeping busy painting large plywood stars. Why you ask? The city of Pittsburgh won the hosting of the Baseball All-Stars game this year. To celebrate they want to fill the Penn Avenue corridor of downtown with plywood stars that are 4', 6' and 8' in diameter. They put out a Call for Artists to submit design proposals the stars in May "to depict and/or express actual events, places and people from Pittsburgh’s past, present and potential future that represent our city’s brightest citizens, hopes and amenities."


I submitted two and they were both accepted. The first, a Pittsburgh token, was Mr. Fred Rogers (he's on a 4 foot star). The second, is George Ferris, the inventor of the Ferris Wheel (he's on a 6 foot star). I finished painting them on Saturday and started the final glazing and varnishing layers yesterday. Of course, if I could just get this weather to dry up a bit, it would greatly help the drying time!

SOME progress!

Finally, I have some progress to mention! On Thursday, I met with Lister and he finally felt that I could begin to take down the steroid amount! Granted he is taking me off of it VERRRRRRRY slowly (just 5 mg less every OTHER day), but HEY! it's better than nothing. My next appointment isn't for another 3 weeks, when he'll hopefully take me down an additional 5mg. At this rate, I should be completely off the steroid by....21 weeks. WOAH. That's almost another 6 months!!
*Sigh*
Oh well, right? It's better than cancer.

On another note, I think (fingers crossed) that I have had my last bone marrow biospsy. Or at least my last one for a while (the last one required for my current treatment). And I just gotta say, SONUVAGUN! There's is NO easy way around one of those things. I try the whole imagery thing, deep breaths, short breaths--you name it, but really, NOTHING is making that needle in your hip hurt less unless it's a numbing drug. Luckily the lady that did me on Thursday was of the school of thought: "the more juice I can give you for that, the better." That made me hold her in very high esteem. :) Why would they do anything else for the patient? Just give us the juice, man! The worst that can happen is that our butt cheek is numb for a few hours afterwards and surely that can't be worse than trying to drink water after having a filling done at the dentist, right?

And the birds warbled on high!

Last night we got "the phone call" from Home Depot letting us know that the fridge that we ordered _over a month ago_ would finally be delivered to us today. Well, it did actually come and it is gorgeous! Lovely, shiny beast...we love you!

One step forward, two steps backward.

Argh. It seemed to both Ralph and me that my rash was cooling down and my energy was increasing. We thought it might be a sign that the GvH had cooled down enough so that I could begin to come off the steroids or get taken off them completely.

Nope.

So, the rash DID cool down and I did have more energy, but apparently the GvH decided to go elsewhere--my liver. Nothing hardcore still, but Lister saw that my liver levels were even higher than they were 3 weeks ago and decided to put me back on CellCept (a 3rd immuno-suppressant). He said that he wants to do this first before pulling me off the steroid. I guess it's like a safety net--make sure my system is calm before trying to slide out the steroid slowly from below (I'm imagining those guys who grab the table cloth and pull real fast so that the plates stay on the table). However, it sucks now, because I'm probably going to have the most energy that I've had since the transplant, AND be the most susceptible to infection. *Sigh.*

For Juan and Ari

Last October, Juan Carlos and Ariadna got married and for their wedding gift, I offered to give them a painting. The following weekend, we got together for a couple of hours for poses to paint a portrait of them. This weekend, I finally presented them with the finished product.

First shower of the year!!

Actually, it's my first shower in over 5 months!! Since November 26th, I've had a port in my neck for the nurses to get quick and painless blood draws. With the appointments slowing down to once every 2 to 3 weeks, I wasn't sure it made sense to keep it in. For those of you I haven't spoken to about this directly, it was essentially an IV line that accesses my jugular vein. It was clamped down on my collarbone and sealed with a clear plastic "dressing." It was one tube coming out of me, but then it splits into three tubes to allow for multiple medications or IV bags to be attached to me while I was under treatment or in the hospital.

In any case, after talking with Lister about it on Monday, we decided that we could probably safely take it out now. So, he says, "We'll do it right now if you want. Hold on..." and he exited the exam room. I'm thinking, "HUH? Uh....don't I need to go the surgery area or something?" He came back in with the last nurse there in the office that evening. She says to me, "Don't worry, it won't hurt. Now, turn your head away and exhale." If someone had told me that you could have 6-7 inches of tubing pulled from your jugular and barely feel it, I would NOT have believed them. However...really, I barely felt it. Just a sliiiiight pinch and then the pressure of her hand on my neck to make sure that there wouldn't be any bleeding. And there wasn't any! No blood on the tube, no blood on the gauze. Bizarre!

Needless to say, the pleasures of not having my tubes to worry about are great. I couldn't shower before because the dressing couldn't get wet, which meant months and months of baths. Also being careful not to roll over on them in the middle of the night and accidently pull them out (which the doctors fill you with stories of folks who have done just that). Not to mention that anytime I looked in the mirror or got together with a friend, there was this glaring reminder [of the obvious], and it's really getting too warm out to wear turtlenecks all the time.

Interestingly enough, I put on a tank top today and barely noticed my the scars on my chest. I'm just so happy to not have the port sticking out anymore that all other marks on my chest seem minimal. To celebrate, tonight, I'm baring CLEAVAGE.

Kicking and screaming.

Sometimes, like today, I've had it with cancer and being sick. I DON'T WANT TO BE THE GIRL THAT HAS CANCER ANYMORE. I'm done! You hear me, Mr. C?!! Bugger off. Find SOMEONE ELSE.

I'm tired of worrying about every little pain. I'm tired of being TIRED ALL THE TIME. I hate looking in the mirror and seeing this bloated rash covered face THAT'S NOT MINE. I want my hair back. ALL OF IT. I want to be able to look at summer blouses and not immediately think about whether or not they will cover all of my scars, before I even check for my size. I want to be able to eat spicy food and not worry what it will do to the inside of my mouth or my esophagus. I want children to be able to hug me without having to recoil with the fear of the germs they are carelessly giving me. I want to forget that I've ever had this disease.

It's days like today when I want to find the fabric of the world and bunch myself all up in it, kicking and screaming--thrashing about like a fish out of water and screaming like a banshee.

Quote of the Day #2

"He's a useless type of person."

Spoken by someone describing an acquaintance who she felt didn't contribute anything to her person or society as a whole. Which, really, it's not THAT unusual of a statement, it was probably more in the delivery of the line. It was a phrase that came out like a matter of fact/casual statement like, "Saturday? Yeah, Saturday comes after Friday."

Sleepy, Sneezy, and Snow White all in one!

No excuses, I know. I really should have posted before today. It's just that things have begun to move a little more slowly. I felt like there wasn't anything majorly different--just more time recovering. The doctor's appointments have now moved out to once every 2 weeks rather than weekly. My next appt is in a week, at which point Lister said he is considering pushing out the time between our visits even more. I'm hoping that if he pushes out the visits, then the port would also be ready to be taken out. It would be nice to be able to take a shower again (I've had to have baths only for the past 5 months).

Any of the side effects that I'm experiencing are nothing new: extreme dry eyes, fatigue, skin rash, and other minor GvH symptoms. One thing that I can say is that the cramping in my hands and feet has let up almost completely. That's been a big relief. My face is still a bit puffy from the prednisone and interestingly enough, all of my hair hasn't come back yet. It's mostly there, but I'm not the hairy beast I used to be. I think it's because I have the GvH going on in my system (thinking that my body is using the protein to work rather than go to my hair and nails). Like everything on this recovery, it seems like it's just a matter of waiting and resting. You know, the other day, I slept 17 hours in one day!! Unbelievable! It seems ridiculous to me that I could be THAT tired. Lister says it's normal. He says that GvH normally will make a patient tired, but on top of that, the fact that I've gotten the GvH so soon after the transplant is going to make me even more tired. (My body hasn't had a chance to recover from the transplant). Oh well. I guess I'll just roll back over and sleep some more.

Newness

Tonight, I looked through images on the internet of babies for a card I wanted to make for a friend who just had a baby. Actually, she's the first of my friends to have a baby, so I'm ridiculously excited to go and see her and the new one tomorrow.

As I'm looking at the images of the babies, in all their baldness with chubby cheeks and big eyes, I can't help but think of cancer patients and how they look surprisingly similar. Then I remember that when you receive your last dose of treatment, it is considered your "birthday." For instance, mine would be December 12th, because that was the last day that I received chemo with this transplant. Some treatment centers actually give you a balloon or card to celebrate. I just thought that was an interesting parallel--being bald and chubby-faced, and in the case of donor transplants new DNA--again...a new life.

Still on the steroids...

So, I had my weekly appointment with Lister on Monday and he has left me on the last 20mg of the prednisone for now. He seems to see some chronic GvH kicking up. He wants to play it safe, so I don't end up back in the hospital. Although I'm definitely disappointed I won't be off of the steroids yet, I would totally prefer to not get sick again like I did in February!

On the otherhand, Mother Nature has taken pity on Pittsburgh again and is offering a high of 70 on Friday! FANTASTIC!

Quote of the Day #1

"Everything sounds better in the bathroom."

This comment was said in conversation to me in reference to a husband who likes to sing while cleaning the bathroom! (Hee hee).

Sometimes folks say things to me that strike me as particularly hilarious or fantastic or weird or ignorant. I've been meaning to write them down, because they are usually so...potent/unique/succinct. So, I figured what better place, than here? :-)

Celebrate good times!

On Friday, Ralph and I celebrated 6-months of marriage. We went to a tiny, tiny Italian restaurant and ate quite well, and then proceeded to spend the weekend together (normally, Ralph has to work). We went for walks, hung out/read on the sofa, sipped hot beverages, and snuggled. ;-) It was nice. Very, very nice. Now, if I could just get the weather to warm up and get me off these steroids, we'd be smokin'!

From 73 to 37 !!

Argh! Pittsburgh had these beautiful temperatures lately (yesterday was as high as 73!!), and now today, it's 37! :-( Oh well, I really can't complain too much, though. It's been a very mild winter in Pittsburgh this year.

Okay, it seems that I've been "tagged" to answer some questions from a fellow blogger--like "TAG, you're it!" So, here's one of those little surveys in quantities of four:

Four jobs I'’ve had:
Coffee wench
Gap girl
Summer school Arts + Crafts Instructor
the obvious current: graphic designer

Four movies I can watch over and over:
Frida ( "I think it's good. It's very good.")
Ferris Buellers Day Off ( "...in two weeks, you'd have a DIAMOND.")
French Kiss ( "No, not the cow! I just ate that cow!")
Super Troopers ( "Why did he say that?" "He thinks I'm Mexican." "Oh..you're not?")

Four TV shows I love to watch:
Medium
Divine Design
Scrubs
Rachel Ray's 30-Minute Meals

Four places I've been on vacation:
Spain
Germany
Croatia (pictured to the right)
Las Vegas

Four favorite dishes:
Lemongrass beef (from Spice Island Tea House)
Gado Gado salad (also from Spice Island)
Ralph's french toast
California rolls with miso soup and edamames

Four websites I visit daily:
Google (homepage)
Dooce
Drawn
The Superficial (although really, not daily--just whenever I wanna chuckle)

Four places I'’d rather be:
Some place warm where they speak Spanish...I'm thinking the western coastline of Mexico
Lake Winnipesaukee (but I gotta change the season to the summer)
Figure studies drawing session
German language class

I'm going to add four books that I've read recently and loved:
The Devil in the White City, by Erik Larson (still reading it)
Memoirs of a Geisha, by Arthur Golden
The Harry Potter series, by J.K. Rowling
Einstein's Dreams, by Alan Lightman (can read this one over and OVER)

Day +100 !!

So, today I celebrated my day +100 post-transplant. This is an important day, because it is the sort of line between acute GvH and chronic GvH. Granted, in my case, Lister says that the +100 mark isn't so important since I've been 100% donor since Day +26, but that still didn't stop me from enjoying a nice big piece of carrot cake to celebrate the milestone. :-)

Okay, I'm ready to be done with these steroids...

So, that initial high of appetite and motivation was great, but now the side effects of the steroids are beginning to kick in and make me wanna get off of them ASAP. The first one that I noticed was the sleep interruptions. It tends to speed up your blood pressure, and I find that makes it very difficult to wind myself down to go to sleep.

Another recent problem from them is cramping. Without warning either of my hands will suddenly contort to the shape of an old arthritic woman's gnarly hands. It doesn't last too long (like 30 second intervals) but I'd say it's happening, on average, of twice a day. Grrr.

However, the most worrisome potential side effect of the steroid that I'm on, and the true motivation for the purchase of the treadmill, is that they can cut off blood flow to the artery that feeds the ball/socket joint of the hip. If that happens, the bone won't get any blood/oxygen and can die, resulting in the need for a hip replacement. WOAH, Nelly! This, my doctor tells me after I explain to him that last week I woke up one day with excrutiating pain in both knees. He said that the best thing to do was to keep the area active, so the next day, I phoned my brother-in-law (a physical therapist's assistant) for hip exercises and went out with Ralph to pick up the machine that now dominates our second bedroom. Fingers crossed that this stuff does the trick and keeps my hip "in the flow."

Aside from those things, I'm also wanting to get off this bugger fast because it's the second immuno-suppressant that I'm on--keeping me one further step from returning to a normal lifestyle.

"Sub Rosa"

Finally. Yesterday I finally got back in front of the easel--the last time being sometime in January. It was just an hour or so, but I FINALLY managed to put the finishing touches on this painting. The majority of this painting has been done since October, but I wasn't quite satisfied with the final layout. It was missing something. While in the hospital, I was reading the Da Vinci Code and it gave me the idea for the roses. Not a flower I would have normally flocked to, but given the Mexican nature of the painting and what was going on under the roses, it seemed to be exactly what I was looking for.

The photography is a little wonky again (because it's just me taking it here in the apartment) but I am just so happy to have finished it that I wanted to post it sooner. I'll update the image as soon as I have a better quality one!

Like butter.

So, part of the whole GvH thing that I had going on over the past couple of months really took the pounds off. I've never really lost that much weight with any of the treatments that I've had in the past, but this time--good LAWD! I used to be about a size 10 before the transplant, and now I think I must be somewhere around a size 7. It's not a _tremendous_ size difference, I guess, but it just seems that way to me and my missing ass! I don't know if it will stay off, though. So, on Friday, in an effort to control weight re-gain and strength rebuilding, Ralph and I went out and ordered a treadmill. It was only my second trip out to a store since the transplant, and even though I wore a mask the whole time, it was just nice to get out of the house.

Sweet steroids.

Although, steroids definitely have some draw-backs to them--and I really WOULDN'T want to stay on them forever, the energy and appetite that I'm getting from being on Prednisone is impressive. Granted, it's a bit of a scatter-brained energy and a ravishing hunger, but if those are my only complaints right now, then I'LL TAKE IT.

Status of stuff right now: feeling pretty damn well--let's hope it keeps up, cuz I'm digging this high! ;-)

Home again, jiggity-JIG!

I got released from the hospital this morning, and WHAT a wonderful day it has been. The sun was shining beautifully bright and, thanks in part to the very effective sleeping pill last night, I had pretty good energy today. Granted, I didn't do much but sit on the sofa browsing through magazines and email that have arrived in the past two weeks since my induction into the world the transplant ward, but I felt great.

It's good to be home. :-)

New woman.

So, remember that rash that I was getting from the GvH? Well, in the places where it was most intense, the skin has been rejuvenating over this past week. Kind of gross (like dandruff all over my torso), but kind of refreshing to have the new skin. One place in particular where this new skin is coming in is on the lines of the palms of my hands. Not all over my hands, really just along the lines of the palms. I'm not sure how this is happening, but where palm readers look for your life line, etc are peeling as well.

I can't help but see the weird parallel between a new life line, new last name, and the new DNA identity that I'm now possessing.

Yeah, really.

So. I finished the colonoscopy. Yes, I was partially awake for it. I even remember seeing my insides up on the screen during the procedure. It didn't bother me. In fact, I think I may have asked many questions to the snake charmer at different turns. "What's THAT?"

Unfortunately, though, after taking a look up there, my docs want to play it on the safe side. They decided it looked a little pink (doesn't everything in there look pink??) and said that they wanted to take me BACK into custody. REALLY. I guess they want to make sure that I don't develop some kind of strong GvH over the next week and figure if I'm here there's a better chance of them catching any new developments.

So, yes, tonight I type to you from the hospital. They wanna keep me for another 5 days or so. (Shrug). Whatcha gonna do, right?

Butt, really?

Okay, so I'm out of the hospital, right? Well, yeah, and things were mostly going back to normal. However, Friday night I noticed something about my pooh. It was realllllly red. Yes, I do look at my pooh. I'm not as grossed out by it as some folks are. I just figure--it's POOH.

Anyway, I'd been eating a lot of jello over the past week while I was in the hospital because it was cool and smooth and went down easily. However, while peering into my toilet it made it hard to tell if it was red coloring from the jello or blood in my pooh. Not wanting to be the only witness to this, I called in Ralph to take a look. He is, of course, not of the visually pooh-tolerant. He took a look at it and started saying how I should call the docs and see if they want me in. At that moment had been home for a total of 4 hours and was REALLY not interested in heading back.

Luckily, the doc on-call felt similarly. She said to lay off the jello for a bit and keep an eye on all additional pooh leaving me. If I still saw some stuff that looked like it could be that the next day, then to call her. Saturday about mid-day, I had poohed twice and both times seemed to have some coloring going on. So, in an effort to be better safe than sorry, they brought me in for blood work today (to make sure that I'm not losing blood counts) and a pooh sample. Can I just say that I have a stubborn asshole?! They took my blood work around 10am, but it took me almost 6 HOURS later until my bowels unclenched and gave me my ticket home. I hate that you can't just tell yourself, "Pooh now, please" and just do it.

Unfortunately this is only part of the pooh/butt confirmation. The icing on the cake will be tomorrow. I will receive my very first colonoscopy. I'm not entirely sure that it is necessary, but considering bleeding out the butt can come from GvH and/or the Prednisone, I understand that it's probably a good idea. In the meantime, there's a monstrous 4 liter container of enzyme liquid to be drunken and a whole lot of toilet sitting ahead of me tonight.

Go straight to jail, do not pass GO.

On Monday, I went in for my regular appointment with Lister, but I wasn't doing so well. I had the cold/cough that I posted about earlier, I had a touch of conjunctivitis, but then on top of that on Sunday I seemed to develop a bit of mouth sores, more intense GvH rash (and gastro-intestinal involvement) as well as a low grade fever.

What was a 100.3 fever on Sunday manifested itself higher on Monday. By the time I was done waiting for 2 hours in the waiting room to see Lister, my fever had managed to return and squidge it's way up to 101.2. Lister came in looked me over a bit and asked me how I felt. I said, "Like shit. Fix it, pleeeease." I did my best to give him puppy eyes, but I'm not sure how much of that came across through the crusty pink-eye. He said, "Yeahhhh. I think we're going to take you in house for a bit."

I think it's a clear sign of how under the weather I was feeling, because I was actually kind of happy to hear that. Really, it was just too many symptoms for me to be battling at the same time. It's amazing how shitty you feel when you have a fever. It just seems to take everything down a couple of notches.

Luckily, within just one day I was already starting to feel better. By Wednesday night, I was feeling MUCH better.

It seems that they want to cool down the GvH now, so instead of putting me back onto higher amounts of Prograf or Cellcept, I am keeping the 1mg of Prograf, every other day, and 120mg of Prednisone. Even though I'm not crazy about being on a steroid (I've heard about some less enjoyable side-effects from other patients), it seems like it is better than the Prograf for me at this stage. Apparently, the Prednisone (I may not be spelling this correctly) will cool off the GvH activity while leaving the GvD activity alone. That is GOOD and that is what we want. Cool.

So, yeah. That was my week. In the hospital. I just got out this afternoon. Fingers crossed that I'm out of there for a while. A girl needs some peace a quiet for a bit. It's so ironic that the only time that you body can heal itself is when you are sleeping and that while in the hospital is it IMPOSSIBLE to get un-interrupted sleep.

Chicken noodle soup, please!

Argh...I have a cold. :-( I have had a cough for a few days but I thought it was getting better. However, today, I am certain, it's just getting revved up. It's nothing hard-core--no fevers yet, just mostly a REAL annoying cough and fatigue. Blegh. CURSES!

Anyway, I met with Lister today. He seemed much more happy with the progress in my case (the regression, that is) and wants to see me on Monday to watch the rash that I have now started to sport. Remember some rash, good; too much rash, bad. He also gave me a heads up that sometimes tumor activity will kind work like a see-saw. Meaning that while I had a great reduction in the disease yesterday, it's not unheard-of for it to fluctuate for a bit. They just have to keep their eyes on it. (It's just more free titty glances, is what I think). ;-P

Oh yeah. OH yeah! OH YEAH!

Do you remember that commercial for Koolaid where the picture of ice-cold cherry koolaid comes bursting through the paper wall at the end, saying, "OH YEAH!" That's pretty much how I'm feelin' right now. Folks, I have some outstanding news: Lady X has begun to clean shop and there will be no additional radiation therapy at this time!!

Ok the details: there were two new spots as of my last test (which, by the way, was just 3 WEEKS AGO). One was in the muscle tissue around a rib behind my right breast; the other was a little lower than the previous spot (about the base of my sternum). The spot that was in the muscle had moderate uptake on the PET scan; the central spot had low uptake. Well, as of a test today, the "muscle" spot is gone. G-O-N-E. And the central spot is further decreased in size and even LESS uptake than was there. In other words, my docs are now thinking that the GvH/GvD is finally kicking in! In which case, they have decided (and I heartily agree) that there is no reason why I should have radiation therapy at this time. We are going to keep an eye on it and hope that the GvD takes care of the rest of it.

O happy day! I'm so psyched that I *actually* contemplated a little dancing gif!

Rash behavior

So, yes, the Steelers won. It was a pretty good game and there weren't too many crazies in the streets afterwards: a few fireworks and some hollering. The largest display of craziness was when some folks at the end of the street, where there's a sign for Ward St, seemed intent on removing the sign for their personal collection (probably b/c Hines Ward won MVP). Yes, boys, that IS actually something that someone is going to hear: metal being dragged on the street and wacked at 12:30am. Sound travels quite well during those times.

I actually ended up feeling like I wouldn't have minded if the SeaHawks won, because I found out something about the owner: he's a survivor of Hodgkins Lymphoma! I'm telling you, I REALLY wish they had told us how actually common this disease is in health class however many years ago!!

On another note, I have some additional good news. I have begun to get some more GvH. It seems to be just a light rash, but it's still something that Lister should be happy about. I'm not sure if I've explained it well enough here, so I'll sum up briefly: the doc wants a certain amount of GvH to occur because it's more likely that the Graft vs. Disease (GvD) is occurring. However, they don't want too much GvH, because then we have a problem. It is a fine line between not enough and, "Oh shit." So, I'm now down to taking 1mg of Prograf (the last of my immuno-suppressants) every other night and it seems to be initiating this process of GvH (and hopefully GvD).

Also, it does seem like they want to hit it up with a bit of radiation afterall. I was in with my radiation oncologist the other day and we were discussing what the options were for the areas in question. He seemed a little hesitant to radiate, so he wanted to talk with Lister to determine "what my long-term treatment goals are." I thought, "Shit. What the hell is that?? Does he mean that he needs to find out if we are still looking to cure me, or if we are just looking to prolong my life by 5-10 years?" It turns out that is exactly what he meant and the answer is: they are still aiming for a cure. They still believe that, at the end of this treatment, I may never have recurrent Hodgkins Lymphoma. Aaah. Wouldn't that be FANTASTIC?

Fighting.

Surviving cancer is a long, at times arduous, thing. It starts with diagnosis and continues long after the treatment is complete. I realized today that as of next month, I will have been fighting the good fight for four years now. I think even others who are considered cured, can't ever forget the things they've felt, the horrors they've seen, and the fortunes they feared. We are always a veteran of a war on personal domestic territory.

Here We Go!

This football season, Ralph's gotten me into the sport. Interesting, huh? The German explaining how to play American football. ;-) In any case, like many who have succumbed to the truth of becoming a Pittsburgher, I support the Steelers (well...when they aren't against the Patriots at least--need to support my roots).

Pittsburgh's gawin' to SuperBowl!

An awkward whistle.

Most days, I find that I fluctuate between believing that I'm going to kick this thing and planning my funeral. Sounds morbid, I know, but I have thought about it. Even the song that would play in the background. This is probably the hardest part of any cancer treatment: the waiting. The waiting to hear test results, the waiting to see if a treatment took, and after remission, the waiting to see if it returns. My current wait...see if the removal of one of my meds will cause just the *right* amount of GvH.

Yes, she has entered, but she has yet to clean house.

Today I got the results from the first PET scan since the transplant. It seems that Lady X's cells have not begun to attack tumor activity, as there are two new places of activity. The previous location, however, is not active at this time. So, in an attempt to give Lady X's cells the boost to kick cancer's butt, Lister has initiated a strong cut-back of my immuno-suppressant drugs. Today I stop taking my daily 1,000 mg of one, and if there are no extreme changes in my situation, they will also cut back on the other sometime next week. In addition, there is talk of using radiation to one of the newer areas to help out. So, the transplant hasn't worked yet, but we still seem to be within the normal range of treatment scenarios.

Lady X has moved in.

I just had a appointment with Lister yesterday where they shared the results of my first test for percentage of Lady X vs. me. It turns out, that as of December 26th (when they took the blood for the results--Day +26 post transplant) I was already 100% Lady X cells in my body. Woah!

Next steps? Tomorrow I go in for another test to determine if there is any activity in my tumor area. I will find out the results of the test on Thursday afternoon.

Fingers crossed, prayers spoken, and positive energy flowing my way, please!!

Painting again!

Yesterday I painted for the first time since treatment. It felt so good to get in front of the easel again. I wasn't sure if I would have the energy for it, because lately when I stand up, my heart rate soars through the roof, leaving me out of breathe and needing to sit down. So, I brought in a tall stool with me and leaned back onto it when I felt like I needed another breather. I was surprised that I didn't need the stool as much as I thought I would. Painting and drawing have always been like a drug to me, making me completely forget about anything that is bothering me or difficult, and yesterday was another example of it. In the end, I painted for about two and a half hours until my arms (not my heart) got tired and I had to lie down. I left my studio space satisfied with the additions that I put into the painting, and went to bed last night happy knowing that day, I was a painter.

Numbers.

Happy New Year everyone! (and for those who don't already know, I am now a year older as well.) I've gotten a few days off again. They are back to trying to let me come in every other day again, which is very nice. I feel so much better on those days. It's like not having to see the hospital and getting that extra couple hours of sleep really DOES make a difference.

Upon the suggestion of a couple of friends--pressure from one particularly--I have started doing positive imagery again. I started it about 5 days ago. At the time I couldn't get my white counts to stay above 3 for more than a day.

It was beginning to get frustrating and depressing.

So, that night--Thursday night, last week, I started. The next day that I went to the hospital was Saturday...SCHAZAAM, 3.8! I haven't had a count that high since I was on Nupogen (injections that boost your whites). I couldn't believe it. Today I went in again for my counts (and, of course, more magnesium) and they were at 4.3 !! Normal range is 4.4-10.5, so I'm almost there. My reds and my platelets have also come up quite a bit. It's really quite amazing. Once they get back in the normal range, I can eat fresh vegetables again. Ah...a salad would be nice.