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.

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.