Posted by Sammy

2pm from Home.

Ohio is fired. This weather is teh suck. I havent been to work since Moday....so obviously we havent rehearsed since Monday....eek. So we have work to do when i get back to school.

So I made it back to Ohio this week. Got in late Sunday night and without fail, I was back to the Maverick-Goose Top Gun Flight Team on Continental. Apparently on that airline "we're starting our initial descent" translates to "im going to point the plane straight down." Texas was good. Steph is moved into her new apartment to finish out chemo....were counting down, only about 3 months to go! She seems to be tolerating the Methotrexate pretty well. She felt puny after chemo infusion, but today seemed to be doing ok. Looks like she might be relegated to using the by-the-pool net connection. Not sure some of the apartment upkeepers know much about the interweb, but its a great service that they do for patients to have those apartments.

All is well here. Have a Wind Symphony concert this weekend. Jazz trombone soloist named Harry Watters is playing with us. Ive played a concert with him before...he's pretty good. Really smooth jazz players always amaze me. Just something thats never been my strong suit. Think about it in terms of football players. If the jazz trombonist is the smooth, cool, and finesse quarterback, then im more like a middle linebacker. I think it comes from those years of playing in large orchestra settings. I think ive mentioned this before but i like to use this idea I came up with to describe what playing trombone in a big orchestra is like:

Basically you sit for an hour and listen to music thats like a very secenic beauiful field. And that field is full of cute little bunnies. They hop and frolic and for that hour you think to yourself how nice those little bunnies are and how beautiful the field is. Then for about 5 minutes, you drop napalm on those bunnies. Rinse and repeat.

Anyhow, after that lovely visual im off for a bit. Gotta be productive. Jeremy and I have done quite well at not turning my basement into a frat house though we have quite the nerdery set up in the dining room.

Remember Im taking donations for my Philly livestrong challenge. Goal is $2,000 so tell anyone you know and feel free to pass the link along.

http://philly09.livestrong.org/sammyminge

Sammy

Posted by Stephanie 6:30pm CST from the infusion center at MD Anderson

So, let's see, I've been at the hospital 10 hours now. I was only supposed to be here for four hours, but no, it's been ten. As you've probably figured out, I'm a little frustrated. It's somewhat of a long, drawn out story, but basically, they had the wrong set of orders for my chemo this morning, so they called over to the sarcoma center and one of the nurses (not Mara because she's off the rest of the week) corrected the orders. But, before I could be taken back to a room for the infusion, I was told that I had to have my creatinine level checked. That's the first I had heard about that, and there wasn't a blood test on my schedule, so they had to order it and send me downstairs to the diagnostic center to have it done. I waited more than a half hour to get called back for the bloodwork, then waited more than an hour for the results. When they finally did take me back to a room and brought in the chemo orders to go over them, they were again incorrect, this time with wrong dates on them. They had to page Dr. Benjamin and wait for him to call back. By this point, it's several hours after my initial appointment time, and because the doctor had been so emphatic on Monday that this chemo be given early so that subsequent methotrexate level checks were done early enough to get results back, mom and I were getting worried. She even went up to the sarcoma center to speak to a nurse, but was told it was "fine" and that if the methotrexate level results didn't come back that same day, we'd just have to wait and get them the next morning. Anyway, back to the infusion center--we finally got Dr. Benjamin to correct and double-check the orders. However, we ended up waiting another hour before the pre-medications even arrived from the pharmacy. It ended up being more than six hours after my appointment time when the chemo actually got started. Oof. Oh, and the methotrexate is yellow. Neon yellow. Weird.

Another thing about this chemo regiment that I didn't mention yesterday is the extra work that has to be done on my end at home. In addition to taking the leucovorin every six hours, I also have to test the pH of my urine every single time I use the restroom. Like many things, the methotrexate is secreted/removed from the body through urine, and that process is more successful if your urine is alkaline (above 7.0 on the pH scale). You achieve alkalinity by increasing the amount of sodium bicarbonate taken, so I'm adding a few pills to my normal daily amount. I also have to drink 4-6 liters of fluid for the first three or four days of treatment each cycle. That's a LOT of fluid. I already feel like I'm gonna float away with as much as I've had today. Good times.

Looks like there's only about five minutes left till the methotrexate is finished. Woohoo. As usual after getting chemo, I'm feeling pretty puny, so it's home with us to relax and find something that sounds good for dinner. I hope everyone back home is staying warm and safe with all the snow. Sammy said this morning that our county (and the surrounding counties) were under a level 3 snow emergency. Obviously, he was off school, as he was yesterday, and probably will be tomorrow. I'd like to be home to build a snowman or make some snow angels. It's supposed to be below freezing here tomorrow morning, but no snow, obviously. Alright, I'm off for now. Later all.

--Steph

Posted by Stephanie  7:25pm CST  from the Cyber Center at MD Anderson

Blarg.  I had to come all the way over to the cyber center at the hospital to post because there's not internet access yet at the new apartment.  In fact, there's been loads of drama with getting internet access at all.  Long story short, the church group maintains both the cable and phone accounts in their name, so there's no way to call and get high-speed cable or DSL internet because we can't add services to accounts that aren't ours.  Now, that's the way it was in this apartment the last time we stayed here three years ago, but when Sammy talked to the church contact last week, she said it would be possible, no problem....then today when I called to say we were having problems getting things set up with Comcast, she went, "Oh, I guess I didn't understand what your husband was asking last week."  Grr.  Makes me long to go back to the apartment we just vacated this morning, because there, if you want cable (or internet) at all, you have to pay for it yourself.  On one hand, I really am thankful that this second apartment pays for cable as part of the apartment package, but on the other hand, it makes adding internet nearly impossible, and I won't have my DVR to tape things........oh well, I'll get over it.  At least I have a nice place to stay, right?  I shouldn't complain.  Anyway, after many phone calls and much researching, I was told that other church groups who also maintain the cable and phone say that their tenants get mobile broadband internet through their cell phone companies.  It'll be a limited amount of access (only 5 gigabytes a month), but we will make it work.

Anyway, on to the info about my appointment with Dr. B yesterday.  Three weeks or so ago, when I was supposed to see him last, and instead ran into him in the hallway (which he deemed an adequate checkup, go figure), I had the next day e-mailed his nurse, Mara, with some questions.  Back last fall, Dr. Benjamin had indicated he'd like to do three rounds of this outpatient regiment, but when Mara got back to me, she said he wanted to do one more.  Well, when I saw him yesterday (actually in the clinic!), he said he'd changed his mind again and didn't feel the need to do more than the three I'd already had.  Instead, he wanted to move on to something new--high dose Methotrexate.  It was something he'd mentioned as a possibility, so I wasn't surprised.  Having had high dose chemo before, I assumed it would be inpatient, but he said that it was actually done outpatient.  How it works: they give a very, very, VERY high dose of methotrexate over a four hour infusion.  Twenty-four hours later, I have to start taking Leucovorin, what they call the "antidote" or "rescue drug" for that dose of chemo.  That medication will help to start lowering the level of methotrexate in my system (otherwise it could potentially be lethal!), and I'll continue to take it every six hours around the clock until the level of methotrexate in my system is almost non-existent.  This regiment should not be as hard on my immune system--counts will still go down, but not as low, and will rebound quicker.  Because it is not as hard on my platelets, they are stopping the Nplate injections.  It's meant to be given every two weeks (oh goody), although it may be three week cycles if any part of my counts don't recover fast enough.  His plan right now is to do 4-6 cycles of this, and then guess what--he thinks he'll be done!  Done, done, for good, done.  WOOT!  Dr. Benny had mentioned last fall possibly going back to Ifex at some point, and when I asked him about that yesterday, he said in all honesty, he thinks if he tries to give me any more of that, my kidneys will never recover.  They're not even going to do one round to see if it's viable, because he said anything less than three rounds isn't worth doing, and we know my kidneys can't handle that.

So, I think that's the gist of it.  The side effects for methotrexate are supposed to be pretty much non-existent for 95% of people.  Maybe some mouth sores.  Here's to hoping I'm not in the 5% that experience problems!  I will have to get a specific blood test done every morning to measure the level of methotrexate in my system until it's low enough--should take about five days.  I start the first cycle early tomorrow morning.  We'll see how it goes.

Still more to share, but the cyber center's about to close, so I'm off for now.  I'll stop back in tomorrow while I'm here for chemo and post a little more.  Adios for now.

--Steph

Posted by Stephanie 10:35pm CST from the apartment Houston, TX

The past week has been absolutely crazy. Between trips to the hospital for bloodwork and transfusions, dealing with apartment drama, having mom fly home for a long weekend, and Sammy come down here, well, there hasn't been much free time.

As much as I have to share, this won't be a long post, seeing as how I'm in the middle of helping mom clean and pack up the apartment. Yes, we're moving. No, not by choice. The church groups that rent out these places have a six month limit for each patient in any one apartment. Knowing that time was coming for us, Sammy and I called and got put back on the list for another apartment in late December. Having never waited more than 7-10 days for an apartment to come open, I was surprised when the six-month mark (January 11th) came and went without word on a new place to stay. Thankfully, the church group in charge of our current apartment was gracious enough to let us stay here until another apartment became available. Another week went by.....and another. Finally, last Thursday, after a month of waiting, we got a call that there was an open apartment in the same complex where we are currently staying (hooray!), and it would be ready Monday (today). After looking at a map of the apartment complex to locate the new place (there are over 700 units in this complex, it's HUGE), talking to the new church contact person, and thinking back to three years ago, mom and I put two and two together to realize that this second apartment is the same second apartment we had the first time through treatment. What are the chances?! Crazy.

I got the keys for the new place this morning, and went to check it out, expecting to walk right into the familiar furniture and set up. Boy, was I wrong. Sometime in the last three years they've brought in completely new furniture, curtains, bedding and wall decor. I know it's the same place, since I found the old paperwork with that same address on it, but wow, it's had a makeover. It is a little smaller than the apartment we've been in, but it's still really nice, and I'm just feeling blessed that we have a great place to stay while I finish up treatment.

Speaking of treatment, I saw Dr. Benjamin today, and there's been another change in my treatment plan. There's so much to share about that appointment and the new chemo regiment that it'll have to be saved for a post tomorrow. Right now, I've got dusting and packing to finish. Thank heavens for the pack red cells transfusion a week ago--I wouldn't have the energy to do all this without that boost to my hemoglobin! Night all!

--Steph

This will be short and ill post with more detail in the coming days but i have decided to go for it. I signed up to ride the Livestrong Challege Philadelphia. Im registered for the 100 mile ride (ouch!). This is going to take a ton of work on my part but I know its for a good cause. What I need now is support and backing. I am not asking for money for me to use but donations supporting my efforts in this ride to the Lance Armstrong Foundation. No other organization has thrust cancer into the international spotlight like LAF and in doing so united survivors and supporters from all walks of life from all different kinds of cancer. I've had enough of this disease and Im sure you have too. The LAF says of the challenge "Go ahead, pick a fight." I am. Im asking any and all of you to pick this fight with me. I dont just see it as riding my bike, but as making a statement...showing, along with others accross the country that we will not sit by and watch this suffering. We demand that it come to and end. 560,000 Americans die every year from cancer. 1,500 every day...millions every year worldwide. This ride is not about enjoying the scenery. A ride on a cool spring day along the river is for that. I am putting myself through 100 miles, under a timer, in August heat as my tangible way of fighting this thing. This disease has dicted our life for the past 3 years and others for longer. It ends too many lives. This is my way of fighting back. I cant do much. I can play trombone, teach kids music, and ride a bike. Thats about it. So I am doing this, along with others. All money donated goes directly to the LAF to support their mission of ending the suffering caused by cancer. Anything you can contribute no matter how little goes to making that goal one step closer. The link to my challenge site is at the bottom of the page. Please visit it...ill be working on it and updating it as the days go by but the donation info is in place. And if nothing else, let me ask this of you....wear yellow on August 23. Thats the day of the ride. And tell people why. Those of you reading this site have followed what we have been doing for a long time. Now is the time we take action. Make our leaders hear us. To take a line from M.D Anderson...lets "make cancer history".

http://philly09.livestrong.org/sammyminge

Sammy

Posted by Sammy 1230 pm from Home

So its back. American Idol. I'll admit I watched it obsessively the first season like everyone else. But now, its just getting old. It seems almost staged. I actually only watch the first few episodes to see people make fools of themselves and then check in in May to see who or what was declared to be this years Grand Poobah of singing talent. And Im usually disappointed. It always amazes watching people get so miffed when they get told to get lost at the auditions. They are told they are bad singers, and 99.99999999% (repeating of course) are the most terribad singers Ive ever heard. But do they accept that they arent talented and go practice or just walk away? No. Do they suck it up and go find something they're good at? No. Instead we are treated to category 5 Hurricane Emo, with a whiny, fit throwing storm surge of epic proportions. Thank God for them they didnt attend music school. Of course even if they dont have that happen and they make it all the way to the end, they still find away to plague the nation with their abominable lack of talent....anyone see Kelly Pickler's attempt at "reporting" on the New Year's eve special?

Anyway this has been a crazy few days. Got a "snow day" on Friday. I use the quotation marks since it was more for cold and i assume frozen roads than snow. Nice to get a day to relax. Then today off for MLK day as well. Of course that means that with all this down time comes plenty of practice time *glares menacingly at band students*. Been doing some straigtening around the house. My friend Jeremy is coming in to stay for about a month while he does dayon opera so that will be fun. It will be good to have someone around to actaully talk to since most of the time I feel like the crazy cat-man talking to Simba all the time.

"Ok so you know I'm not actually talking back....right?"

In other news, I am contemplating somthing a little crazy but could be worth it. I really want to ride in a Livestrong Challenge. I can probably swing the Philadelphia ride. Its on Sunday August 23, so i could make it work and not miss any marching band practices. I would need to raide a minimum of $250 to ride...that money goes to the LAF. Im thinking it could be a good thing and very worth while. If I decide to do this Ill put info up on here so everyone can check it out. I know I can hook up with the CCC team so I wont have to be all my me lonesome on the course. If i do it though I want to go all out and do the century....yeah the 100 mile ride. (can you say ouch?) It just needs to warm up so i can get on the road and start riding again. I keep the bike on a trainer indoors but Ive always thought the trainer isnt the same. I like outside better.

Slacker...er...Steph....is doing good. She got platlets the other day and blood yesterday so shes actually feeling decent and her white count is on the rise so we should actually be able to really enjoy our visiting time this weekend. I fly out Friday evening.....direct flight this time so that beats a layover, though im seriously convinced that Continental pilots have a the Top Gun theme playing in the cockpit. Those guys dont waste any time coming in for a landing.

Training session for new pilots on Continental Airlines.

But its ok. Anyway beats waiting on baggage claim at certain airports (McCarren International in Las Vegas, Im looking at YOU!!!) They seriously took an hour or more to get the bags from the airline to baggage claim. Not really a daunting task.

"I really think we've been waiting on our bagge long enough."

So anyway, thats it for now. Gonna go be quasi-productive.

-Sammy

Posted by Stephanie 10:30pm CST from the apartment Houston, TX

Well, hermit-tude has officially begun now that my immune system is in the tank. Kinda sucks to not be able to leave the apartment except to go to the hospital for bloodwork, but it does allow ample time for things like the four hour nap I took today. It was glorious. Of course, the headache and nausea I had that prompted me to go to sleep in the first place were not glorious, but the sleeping was.

As usual, I have been extra lame in keeping up with posts lately. I'm starting to get e-mails and messages from people asking if I'm okay since I haven't updated lately. There really hasn't been a whole lot going on. As Sammy mentioned in his last post, I was supposed to see Dr. Benjamin last week, and I did.....just not in an exam room. We were waiting in the sarcoma center to get called back, but Mara came out after about an hour and said that he was gonna be with a new patient all morning, and that instead of having us wait, she'd give us a call when he was ready to see me. So, off we go, and then, in a hallway clear across the hospital, we pass Dr. Benny, who was neither a) with a new patient or b) even at the sarcoma center. We chatted for two minutes, he saw I was obviously alive and breathing, and that was enough for him not to feel the need to see me in the clinic. Oh well. I did find out a couple of days later in an e-mail from Mara that he plans to do one more round of this outpatient regiment--four total, instead of the three he'd orginally planned. Don't know the reason for that yet, but I see him again in a couple of weeks, so we'll find out then.

Had a followup appointment with the cardiologist on Tuesday. They just wanted to make sure the beta-blocker they put me on was working okay, nothing terribly eventful. It was decided that I should have an echocardiogram every 3-4 months just to keep an eye on things, so I have one of those at the end of the month. I also saw Dr. Curley, my liver surgeon, for a followup appointment yesterday. He said the scans I had on Monday (abdominal/pelvic CT, a.k.a.--fun with barium) looked clean, and that all the liver function bloodwork was well in normal range. YAY!! He said he'd like to see me again towards the end of all my treatment, just so they can repeat the tests and make sure things are still looking good. I learned from another patient in the waiting room that Dr. Curley was on 60 Minutes about a month and a half ago. Turns out he's part of a team of physicians pioneering a new treatment method using nano-particles to seek out and destroy cancer cells with heat. Seriously cutting edge crazy stuff. They plan to use it in place of chemo in some situations. He said they hope to be in clinical trials within three years--guess it takes that long just to get through all the red tape with the FDA and what not. And that's with it being fast tracked. Geez.

I haven't been feeling too bad with this chemo round so far. The first couple of days after chemo were filled with the usual sore throat and body aches, but this time I had a fever too. That part's not normal. It was almost high enough at one point to send us to the ER, but thankfully it never got that high. Every one of these outpatient rounds has been different--never the same progression of symptoms twice. It's trying to keep me on my toes, I guess.

Sammy's coming down soon. Not this weekend, but the next. We had hoped it would work out to get him down here over the long holiday weekend, but ticket prices were super high. I'm excited to see him, and I know he's excited to get away from the bitter cold for a few days. And eat tex-mex. By the time he gets here I should be feeling much better, so we'll be able to get out and do something fun. It's been chilly here lately (for Houston, anyway) with temperatures just at or below freezing in the mornings. But, compared to the wind chills of -20 back home, it's nothing. Makes me laugh at everyone around here who complains about the cold.

Alright, time for the nightly ritual of line-flushing, pill taking, then bedtime. I hope everyone is having a great start to the new year.

--Steph

Posted by Sammy

715pm ET from Home

I have seen the face of horror and its name is 5am!

I keep thinking of the opening sequence to Mr. Hollands Opus. Yeah I saw it....in high school...in the theatre. So did you other band director people. Dont lie. Now that ive been teaching for 6 years a lot of it kind of makesme laugh...it soooo doesnt work like that.

"Play the Sunset...and some more right notes while you're at it....or Ill beat you with your clarinet!"

 Not so much the movie but the line "what kind of person goes to work at 7am?" That the thought that crosses my mind every time I come back from break...just replace the 7 with a 6. Ok 6:30 on days I sit by the phone waiting on Mother Nature to grant us a stay of execution. Ok its not really that bad. Ive said it many times before I love what I do....but 5 am is still the suck.

So Steph is down in Texas. Wooo...oh and as far as the Fiesta Bowl...let me just add "HOOK 'EM!!!!" teehee. Been pretty eventful. Went to see Dr. B, only to find out he was busy with a suprise new patient. So she went to get lunch while she waited on him (it wasnt a clinic day) to get to the sarcoma center. And proceeded to run into him in the tunnell on the way to the Rotary House restaraunt. Anyway, long story short, she didnt really need to see him. Xray fine, blood was blood-like, go go chemo. So after this shell scanned and such and the flair-ed one will decide whats next. Prolly in patient chemo.

I really havent posted much aside from my Christmas post since I got back around Thanksgiving. Yeah Im a slacker like that. I actually had thought about a lot of things to put up on my drive back. It was "special". Some of it was due to a phenomenon I like to call "Not Everyone Should be Allowed to Drive a Car". Or Stupid on Wheels. Take your pick. One of the effects of this occurance is when someone, somewhere in the long train of cars on an interstate stops. Not pulls over, but just decides "I STOP NOW!" and does so. This must be what is happening. They see a shiny on the side of the road or maybe start thinking about cookies, or maybe they play a Jonas Brothers song on the radio and their brain stem collapses after being unable to process such an abominable lack of ability to do, well anything remotely musical. No matter. They stop. I had this happen about 5 times. The most idiotic of all of it was in Arkansas. "The Natural State" or more appropirately Arkansas: "Even NASCAR doesnt come here". Im sure it has its share of good qualities...you just cant see any of them from I 30. Oh you can see lots of dead Armadillos...and questionable-looking business establishments. So I pretty much get through that state as fast as possible. But at one point the entire freeway stopped...no movement. I actually got out my PsP and watched Captain Caveman....everyones care was turned off. They guy in front of my got out of his car to get a blanket for his wife....we were stopped. So once we started moving....20 min later...I expected to see a bad accident, a deer stike, an earthquake, godzilla, something......nope, nuthin. We simply started moving again. Someone had decided to stop. And it stopped us all....bah. Slowest traffic was coming into Cincinnati but it was beginning to snow and we all know how Snow + Ohio Drivers = automatically deduct 100 IQ points. Cause you know, snow is radioactive and also sneaky...its alive after all...and if you dont drive as slowly and as erratically as possible it will melt your tires and kill you.

This might have justified how poorly people were driving.

But all is well and were back to work. Good to be in a routine though Im not going to lie, the break was nice. Good things planned at school though and looking forward to lots of things this year. It is a new year after all... and one where we finish off this cancer stuff for good. Im starting to work on getting ready to ride this spring and summer. Im hoping to do sevral charity rides with some long ones in there. Id REALLY like to do the Livestrong Challenge, but scheduling and location might be an issue. The two that I could realistically get to time-frame wise are in Seattle and California. So we'll see. Ill get a few Ohio rides in there for sure. Im working on some new things for my Local Livestrong Army. The google group page is working for now but Im thinking a good forum would be helpful. I did set up a facebook group for it, but havent added anything to the facebook page yet.Ill get it done...it should allow us to network with other local armies and share ideas and stories. I know the foundation does alot with facebook and youtube and they're on a twitter kick now. But i looked at Twitter and it kind of gave me a headache. Ok, gots ta go work off the 24524324 lbs i gained over break.

-Sammy

Posted by Stephanie 11:45am CST from the apartment Houston, TX

Surprise! I'm back in Texas! Lame.

I didn't anticipate being back down here so soon, especially with the way my platelets were still acting the last time I posted. Last Monday I went it for bloodwork and was beyond shocked to discover that my platelets, which were still dropping and only at 41 the Friday before, were now 111!!! Guess I spoke too soon about the Nplate not working. Not only was that above the 75 mark needed to get the Nplate injection, but it also flew right by the 100 mark to start chemo. That meant I needed to make plans to start the next round of treatment right away. Sadly, I finally got a final answer from Dr. Romer's office about Nplate--they said there was no way they'd be able to get their hands on it, so it'd have to be done in Houston.

I'll admit, I immediately got a little panicky (or a LOT panicky) about finding a way to get back down to Texas. I knew whatever travel plans we'd have to make would be done at the last minute based on my platelets, but we all thought we were looking at going back after the new year, and now were in a bit of a troublesome situation--Dr. Benjamin wanted me back down there ASAP, but Sammy needed to stay home to clean up Christmas stuff and get ready to head back to school, and mom needed to stay at least through Friday to keep an eye on Grandpa. Plane flights for anytime before the new year were insanely expensive, and I'd have to make the trip by myself and be down there for days on my own. Plus, we had all the cars back in Ohio for the holidays, and had to find a way to get one back down to Houston. Driving that back down would be a two day trip, and, well, I think you get the picture about the pickle we were in. There wasn't an optimal situation at all, but after much debate (and a phone call from Dr. Benjamin himself to make the final arrangements--that never happens), it was finally decided that I would fly down Friday morning to get the Nplate injection, and mom would also take off on Friday to make the drive back down. I'd be on my own till she arrived Saturday evening, but that 36 hours or so would be no big deal--I'd rent a car, get myself enough food for a couple of meals, and hunker down in the apartment. Once mom arrived, she'd make the big grocery run I couldn't do on my own (stupid low energy and fatigue), we'd return the rental car and be all set.

I missed getting to hang out with several people I had hoped to see while home because I had to head back early, but I did get to spend New Year's at home, which was great. Sammy and I hung out at his folks' place and ate our weight in junk food. It was glorious.

So, here we are. I must admit, it's nice to get back to some warm weather down here--it was 83 degrees yesterday. Not that I don't love the cold and snow around the holidays, but outside of that time frame, the cold can take a hike. I see Dr. Benjamin on Monday, and should start the last of my outpatient rounds on Wednesday. Unless, of course, Dr. Benny changes his mind, which is always a possiblity. We shall see.

Alright, I'm off to take some pills and then have a little nerd time and play WoW. Have a good rest of the weekend everyone!

--Steph

Posted by Stephanie 11:15pm from the house

This won't be a long post, but I thought I'd check in, since it's been a solid week since I was on here. It's been a busy week with the holiday, as I imagine it has been for a lot of people.

Christmas was really great. As Sammy said in his last post, he wasn't feeling very Christmas-y until the night before, and neither was I. I was honestly pretty depressed. Yes, I was home for Christmas, and that was something I was very thankful for, but I couldn't do anything fun, like go to the Festival of Lights at the Cincy Zoo or have a nice dinner out--didn't have the energy. A few minutes of shopping was all I could take before I was desperate to get in the car and head home, even if I had accomplished nothing. Very frustrating. But, all was well when it came time to celebrate with church on Christmas Eve, and family and friends the next day. Santa was good to both Sammy and I too.

I had bloodwork several days last week. Monday afternoon I had labs drawn--I wasn't surprised when they showed that my platelets were once again all the way back down to 12, despite the platelet transfusion days before. Dr. Romer tried to say that there was no way my platelets would've gone up with Friday's transfusion then dropped so far again that quickly--his conclusion was that the transfusion had only caused them to go up by 2 (from the 10 they were at) because I must've become immune to platelet transfusions, with as many as I've had. HA! I tried to convince him otherwise, since I've seen this happen to my counts after a platelet transfusion before, and I knew they just weren't done dropping yet. But, without proof that the transfusion really did work and cause my platelets to go up, I couldn't get him to believe me.

Later that evening and the next morning, I had some light nose bleeding, which was a signal to me that my platelets were probably getting even lower, and though I didn't have bloodwork scheduled, I called and had it added. Those labs showed that yes, they were down to 9, and I was in need of my second platelet transfusion in five days. Boo. It went smoother the second time around (at Kettering Hospital this time), and when I went for bloodwork Wednesday, my platelets were 44. So there, Dr. Romer, take that!!! I am NOT immune to transfusions, my platelets WERE boosted, and yes, then they fell again. In fact, when I went in Friday, they were down to 41. Not much of a drop, but still falling, nontheless. They should be done dropping soon, and headed back up, although it looks as though it'll still be a few more days before I'm approaching 75k, which is where they have to be to start with the next round of injections. I'm not convinced the Nplate is doing much for me, seeing as how it didn't help prevent my platelets from dropping rapidly, nor did it do anything to help them come back up quicker. Maybe it's a cumulative thing.

Aside from the platelet problem, my white count has rebounded, but hemoglobin is dropping, which I didn't expect. It started in the mid 9's, then dropped into the 8's last week, and this week it was into the low 7's. It's caused me to feel extremely tired, be short of breath and for my heart to race. Nothing new for me, but annoying, for sure. The nurse at Romer's office asked me Friday if I wanted a transfusion, and though I'm symptomatic, I decided to pass. I'm hoping to avoid another transfusion at all costs, but given the fact that today I was even weaker than the last couple of days, I'm guessing tomorrow I'll have to give in and get some blood. Otherwise, I'll continue to be a useless blob on the couch because I won't be able to do anything else--even getting dressed is too much to handle. We'll see.

I guess that's about it for now. I'm off to bed soon. Oh, I did go and see Twilight tonight with a group of girlfriends. Yes, it's the third time I've seen it, and yes, it was still just as awesome. Night all.

--Steph