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? :-)