Down on the count.

I lose track of the days lately. I have to open my laptop to know what day and date it is. Everything just runs together.
Today was the first day that I didn't have to go to the hospital. Lister has decided that we are going to try to have me come in only every other day at least until the end of the year--as long as my counts are somewhat stable. Fingers crossed.

Of course, without going into the hospital this morning, I don't know what my counts were like today--are my whites recovering from their recent dip? Am I getting closer to normal count range with my platelets? Did my magnesium stay up enough? I'm guessing from my energy levels today that the answer to all those questions is, "no." I'm just tired. I get up in the morning and move myself to the couch. I stay on the couch until I move myself back to my bed in the evening. And even though I've done nothing much other than that, I bet you I'll still be dog tired in about a half hour.

Just when I thought...

...I wasn't going to actually loose my hair this time, it is falling out today.

Tomorrow we shave down farther!

White Christmas

As the white stuff outside falls again today, my white cells are coming up. My doctors think that the grafting is already starting to occur! Sweet. On December 30th, they will take the first blood sample that will show the percentage of me vs. Lady X.

I'm SO curious.

counts and counting

There has been much of the same daily: wake up, report to hospital for blood tests, wait hours for results, find out I need magnesium (almost daily), get whatever products/medicines I need, go home. Sometimes this takes about 4 hours, sometimes more. Yesterday it took 9 hours.

So far, the side effects have been minimal, headaches and nausea being the most prevalent. My counts are due to drop over the next week, so that means more home time. The scarier time period will start as my counts start to come back up (the following week) and Lady X's cells start to make themselves at home.

Fingers crossed everyone.

Drugged.

Chemo-chemo-bo-bemo-banana-fana-fo-femo. CHEMO.

The stuff they are giving me looks like a robust version of Mountain Dew. Fluorescent.

La Berlina --SOLD!

Remember "La Berlina?" Well, I finally made it available for purchase and it was bought by a couple in Berlin, Germany. I also had it re-shot to get the colors closer to the actuals for you to see. Emily Rafalak (Gustavson) took this version. I'm hoping that I will soon have a picture of the next one...but I gotta finish it first. ;-)

Day 1 done.

Today wasn't too bad--but it definitely wasn't fun.

I got there at 9am and spent the next couple of hours waiting around. I had an IV put in sometime around 10:30, but then waited around for another hour or so before I was wheeled off to have my new port put in. This little procedure puts a wire, and then an IV line directly into my jugular. Get this...they didn't put me out for that! Just a little local anesthetic. Let me just tell you--if you have to have an IV line inserted into your jugular, get all the pain meds you can before going in there. It was REALLY uncomfortable, like someone is rubbing a chicken bone up-and-down the inside of a tube in your throat. At least twice, I believed the masked knife wielder had poked into my esophagus. Blegh!

Luckily it didn't last too long and within a half hour, I was being wheeled back to my temporary room to receive the chemo. The chemo was fine. Any nausea that I felt came from the soap operas on in the background as the afternoon went on. ;-)

I left the hospital around 5 and I'm now enjoying the pain-free experience of oxycodone.

Ah, yes--something else! Something terrific and touching...while I was waiting for my procedure this morning, my case worker from Lister's office came by with a gift bag for me. It was from Lady X! She sent me a fun and beautiful scarf and personal note of encouragement. What a very special lady. I want to send something back, but how do you thank someone for potentially saving your life?

Ceremonial chop.

It's that time of year again. The leaves fall from the trees, snow flakes are in the air, and I prepare for another round of chemo.

In preparation for this week's activities, Ralph and I have shaved our heads. A little control over when and how I lose my hair.

Wake up

The phone rang while I was taking a nap this afternoon, and because I haven't learned that sometimes you CAN just not-answer the phone, I answered.

"Ah...Gh..Hello?" (still groggy)
"Hey, Stace what's up?"
"Not much. Just taking a nap."

At this point, usually the person on the other end says something like, "Oh sorry. Shall I call back later?" or something like that. Instead she said, "Yeah, I wish I could take a nap..." and continued rambling about her plans for the afternoon. This woman is probably tired because she has a young child and a busy afternoon planned. I'd gladly trade places in reference to reason for fatigue.

I'm angry at my cancer. Now that I'm awake, I'm off to my easel.

Postponed!!

I got a cold. I nice full-nostril, phlegm-hacking, funny-voice cold. So, Lister put me on some antibiotic to try to kick it. We are now scheduled to start treatment next Wednesday (November 23rd).

Now...maybe I can get a chance to paint some more this weekend before I go in for chemo!

The offender

Current status: Ralph and I have officially changed health insurance to a company called Highmark and they have approved the treatment without pause (yes, the SAME one that HealthAmerica waived their hand at). I start treatment on Tuesday of next week and I am due for the transplant on Tuesday, November 22nd.

Something that's interesting/weird...when I get the transplant from "Lady X" her cells will begin to take over my body. I gather it's a relatively slow process, but the eventual goal is that I will be 100% donor cells at some point. It gets weirder: if there is ever a crime committed where my DNA is left at the scene of a crime, it may be mine or it may be hers. We will have the exact same DNA. In fact, there is already a case where a bit of confusion occurred.

Bizarre.

Updating!

So, I've gotten a few notes from some folks about my lack of current events. I didn't think I had new stuff to write about, but then I read the last entry, and realized that I do. :-)

Last I wrote, I spoke about how the man who was found as a genetic match had agreed to do the transplant. Well, apparently, since then, he has moved and they don't have an updated address for him yet! So, now it's on to candidate #2, a 32-year old woman. She has had the physical examination and has signed the letter of intent for donation. All things in that respect are plowing ahead. On the other hand, Ralph and I have been consistently losing each level of appeal with HealthAmerica, so pardon me while I put in few sentences that I hope will be picked up by the search engines [ HealthAmerica denies coverage, cancer treatment, HealthAmerica HMO bad service provider, "time for a healthier relationship" advertising campaign, HealthAmerica denies coverage that even the Veteran's Affairs office has approved ]. I don't know if people would search under those criteria, but should they, I would want them to know what ignorant asses the decision makers at HealthAmerica are. No one should have to fight an insurance organization to receive cancer treatment.

In an attempt to get me into treatment, Ralph and I will switch insurance providers to Highmark on November 1st. So, hopefully the next time I write you, I will be closer to the next steps. :-/

What else...? Ah! Last weekend, I undertook our household's first pluming project--albeit a minor one. I changed the kitchen faucet. Ralph came in the end and tightened a few of the nuts for me, but after 3 trips to HomeDepot and 5 hours, yours truly figured it out. And now I hear the slogan in my head: "HomeDepot. You can do it, we can help." And they did! :-) Next up...a garbage disposal. Hm. Maybe *next* weekend. ;-)

As far as painting, I would love to say that I have advanced to another painting, but I've been pretty tired lately. There's a bunch of things that I wanted to get done before the weather gets too cold, and they left me plum tuckered-out. I'm also still trying to finish up my last one. There's something missing in the layout at the top of the painting, but I can't place it. And I'm hesitant to take it off of the easel until I figure it out, because I'm afraid I won't go back to it. I don't know...but I'll figure out something soon. I gotta get back in front of the canvas.

ttyl !!

SO.

I know....I've been slacking about putting up another post. Everything just gets so busy on both sides of a wedding.

We had a really good time in Vegas, and it was a great place to get married. The scenery of the Red Rock Canyon State Park was just gorgeous.

In addition to getting married, we also took a helicopter/jet ski/Hummer tour of the Grand Canyon/Lake Mead/Mojave Desert. It was more than I normally would have paid, but for the wedding trip, it was SO worth it. I highly recommend it. We also saw a number of shows while we were there: Cirque Du Soliel's "O" at the Bellagio, David Copperfield, and Bally's Jubilee. The "O" was obviously the coolest with the most stunning costumes and acrobatics, but the most surprisingly fantastic show was Bally's Jubilee that we saw on our last night in Vegas. We got tickets to this show before leaving Pittsburgh, because it was recommended by our favorite map company "Cognoscenti." The show was described as "the traditional Vegas experience"--including bare-chested women with more rhinestones and feathers than you can possibly count. But, REALLY, this was a gorgeous show and so fully entertaining. I would definitely see that show again. There were seven acts that had different scenes with people singing and dancing and juggling and tumbling. It was just an eye-full! That night also stands out for us because, after the show, we went and had dinner at the stunning restaurant at the top of the Eiffel Tower in the Paris hotel next door. It was a DELICIOUS dinner with a fantastic view of the Bellagio fountain show below across the strip. Seriously--SO GOOD. I'm salivating just remembering it. I would also highly recommend this restaurant to others--although be prepared, it 'tis a bit pricey.

As far as other news:
About 3 weeks ago, I turned over all communication with the health insurance company to Ralph. I can't handle listening to their poor excuses and discouraging information. I ask him questions every now and then to see where we are at with everything but I don't want to know all the gritty details. Here's what I do know: we have hired a lawyer to fight HealthAmerica and we are currently waiting to hear the outcome of the first round of appeals. On the other hand, that wonderful man that is my genetic match has agreed to donate his stem cells for me!! So, whenever we can get HealthAmerica to toe the line we are good to go.

Painting:
I'm working on another painting right now. It's actually harder than I expected when I started. I'm hoping to finish it by this weekend, but we'll see!!

That's all for now. But before I go, here's one more picture from our wedding. You can see the colors of the area better in this one. Enjoy!

You may now kiss the bride.

On September 17, 2005, Ralph and I were married in Red Rock Canyon State Park, just outside of Las Vegas, Nevada.

It was a glorious evening...(more details to come later)

This photo was taken a little after the minister said, "You may now kiss the bride."

Cold shoulder.

HealthAmerica has now denied coverage for the transplant deeming it as experimental. I spoke with a woman today at member services who apologized for the denial (eventhough she is not directly involved). She said that I should go through HealthAmerica's appeal process. The same process that I have been through for two different treatments already, and that are categorically DENIED every time. I'm starting to think that the appeals process is about as effectual as the little thermostats in offices that make the employees think that they can adjust the temperature of their office. In reality, it's just a placebo to simulate control of the situation.

This morning, I called my contact at HealthAmerica.
"I wish there was more I could tell you. I guess it's your choice."
Stunned, I responded, "To LIVE or DIE?!"
"Well, if you are going to have that treatment...if you are going pursue trying to get your health insurance to pay for your treatment."
"Because there are so many other options?"
"Yeah, I'm sorry."

Good morning to you too.

Some man out there.

I had an appointment with Lister on Tuesday. He confirmed what we had been suspecting. I do need a transplant. This time is should be from a donor other than myself. They have found at least three folks that are ideal matches for me. As of Tuesday I was told that we had contacted the primary "candidate" and are awaiting his agreement.

I know limited facts about this person. It is a 32 year-old male, living in the US. They don't know if he's on vacation or just thinking it over....

Doesn't he know it doesn't hurt? It's not like in the old days when they had to operate on you. It's just like giving blood through an IV. THAT'S IT. They have made the process a whole lot easier.

La Berlina

I think I'm finally done the next painting, "La Berlina." Here it is with a close up of the face area.The colors look a little off...I need to get it professionally photographed. Right now, it's only taken with my digital camera in our guest bedroom. :-/

bizzy, bizzy

I haven't posted for a while...sorry folks. Things are getting really hectic with the wedding getting so close as well as tests for the doctors. There hasn't been any further information on that front. The next meeting with Lister is just after Labor Day...more updates at that time.

Also, keep an eye out for an update on the next painting, "La Berlina." She's almost complete. (Probably another 6 hours or so).

waiting and hoping #1

Yesterday, my oncologist case manager, Renee, called back and said that we should have the PET scan before we have the next meeting. I figured they would want to do that. The test hasn't been set up yet, but I'm guessing I will have it by the end of the month, and the follow up visit with Dr. Lister probably in early September.

This is the meeting where they will discuss all of the things that we should be aware of for an allogeneic stem cell transplant, options, and questions we may have. Apparently, Dr. Lister has found a study that he believes I would qualify for and will discuss that with us on that day as well. Renee said that she would put together a packet of information about the study and send it out to us to read over before the meeting. I'm not sure what the study would entail at this time, but she said something about a "protocol" which usually seems to refer to chemo, I think. Might it be that I might not have to deal with the possibility of another transplant? How nice that would be.

interference

argh....
oncologist office just called to find out when they can set up the next appointment to talk about the possible transplant this fall. all the dates they offered are before the wedding

i didn't want to know if I would have to have the transplant while I'm getting dressed in my gown. i wanted that hopeful "new bride" feel--that the life i live, once married will only be written as "happily ever after"

i'm angry. i wanna fight.
feel like taking this outside?

clones

HBO had a "First Look" at the movie, "The Island." It's some sort of directors commentary/extended preview of the movie. "The Island" is apparently about a place on earth where some folks have a clone of themselves living, in case they need a spare organ/body part. It's a bit of an action flick and looks like a little too much running for me to enjoy—no matter how lovely Ms. Johansson is.

However, the purpose of me bringing this to my blog, was because of what the director said the core concept of the movie is:
"If we could, would we have a clone?"

...If I had a clone, would my clone also get cancer? Would the cancer have come back three times in my clone? How much does nuture (environment and lifestyle) *really* effect the development of a cancer (excluding the obvious smoker-lung relationship)?

Would a transplant from my clone be considered autologous or allegneic?
;-)

Ibrahim, you will be missed.

Today I heard that terrible news that you died.
Ibrahim Ferrer, you had such a soul and passion to your music. Such a sweetness. You will be sorely missed.

From one who shared the stage with you just three years ago,
may you rest in peace.

radiation complete

Today I finished radiation treatment. :-)

Now, we all cross our fingers....

today's radiation

"Okay, Stacy" is how I know they're ready for me.
Mike, the radiation therapist, will call from the hallway to take me to the big laser. I like Mike. He's tall, older and pretty nice. He sees my tits daily for free, so I guess he's going have a certain amount of sweetness.

"I hear Victor was mean to you yesterday," he says smiling. He's referencing when the machine crapped out between position 2 and 3 yesterday and I had to wait.

"Naw, it wasn't so bad." I smile. Whenever he talks about Victor, the other technician, I get that 2-second flash "Who-Victor? My ex-Victor?" I know he's talking about the other tech guy in the room, but the only other Victor I know served a quick 7-month stint as my husband three years ago.

That's interesting.

If we'd stayed together, we would have just celebrated our third anniversary this past spring. And I would have had cancer ever since.

Weird.

...sometimes it seems surreal to me. *I* have cancer. *I* am lying on a cold, plastic plank receiving radiation treatment for a stubborn group of disrespectful cells. Stubborn like me.

Damn.

"Lost"

My second painting has been completed and I've taken a snapshot of it with my digital camera in my apartment. It's titled, "Lost." I started it when I had just gotten the news this spring that my cancer had returned. I felt trapped. Frustrated. Uninspired. The future was dark and uncertain...a.k.a. lost.

I'm not sure if it is really finished right now...in some places, it looks a little too bright and lacking of detail. Perhaps, I'll adjust it....

ps. please excuse the random surroundings...my place isn't set up like a photography studio. The lighting isn't the best, and the shot is taken at an angle, but for those of you who wanted to see the next painting, this gives an idea of it's subject matter.

testing

...this is the first of post to my blog.