Quick update

Latest BCR/ABL tests show a 4 log reduction. Good news. Peace out y'all!

No news is good news

Just a quick reminder that no posts is good news.

MMR

According to my last blood test, I have reached a major milestone in treatment, MMR or Major Molecular Response. What does that mean? Basically it means I have achieved a 3-log reduction in my PCR tests. I see confusion on your faces still.

What is a Log Reduction?
The simplest way to explain a one-log reduction it is to take any interger (say 31) and move the decimal point over one number to the left. So 31 (31.0) becomes 3.1. A two log reduction would make 31 into .31. A 3 log reduction would make 31 into .031.

The goal of treatment is to get to a 3 log reduction from your initial PCR test. I have achieved that. Actually I have achieved greater than a 3 log reduction since my last PCR was .014 and my first PCR was 31.

Whats PCR? Go back and read the blog post titled "I was hungry when I wrote this." See you in threee months!

Still golden

Good news last monday at the Docs. Numbers are dropping and meds seem to be working. Happ Valentine's day!

Good news

Last Doc's appointment went well. WBC at 8.1. Molecular studies results in 2 weeks. Hope all had a good chirstmas and Happy New Year!

Settlin' in

Got on my new medication and have finally settled in. Side effects were a little worse than on the old meds, but I am getting better with them. The "worst" side effect is that now, I get a headache if I drink more than two beers! That kind of stinks, but I have adjusted. Dec 27 I will see if the blood work is getting more in line with what the doc wants.

Happy Holidays!

Some drama....

Well today was a weird day. I had my 18 month checkup and it went ok. While my counts remain stable, my genetic testing is not where he would like it at this point. So, we have decided to stop Gleevec and go onto a new, better medication called Sprycel. From all the reading, this is superior to Gleevec in many ways and will likely become the primary treatment for many patients soon. I am a bit apprehensive since I am now one step closer to the dreaded Bone Marrow Transplant, but still a long ways off. Chrissy did not handle the news well at first. Since I have read up on all these medications, I was aware that the new medication can cause a cardiac condition known as Long QT syndrome. When I brought that up to the doctor, she became upset. They ran an EKG to make sure I am not at risk, and I will start sometime this week!

More Fame!

Hey all! I was notified that my blog was judged to be one of the top cancer blogs of 2010 (award on right). I want to thank the annonymous person who nominated me. I just want to say, this award is for you, my fans. Without your encouragement, support, love, devotion, thoughtfullness, well wishes, smiles, gifts of charity, humorous quotes, etc... I wouldn't be standing here in front of you today. (Pause for applause).

I just want you all to know that because of your support, I feel that we all have Leukemia and are going through this together! (that came out wrong, but you know what I mean.)

I have recently discovered many secrets of life through my journey and I am going to share them with you right now. The first and most important is that you must ALWAYS........ (music starts up letting me know my time is done, then cut to Old Spice commercial)

Old Spice Commercial

Docs Appointment and fame.

Yesterdays Dr. appointment.....went good! He comes in with test results, says everything is progressing at a good rate in the right direction, and seems kind of guilty he doesn't have to spend more time talking to me. He does some feeling around for swollen lymph nodes, asks about any ill effects, seems happy and sends me on my way.

I also had an article done about me in the Kane Republican. It was for the Relay for Life series. When you check it out, please be aware that even though the paper has had my face in it MANY times for concerts, festivals, etc....the caption under the picture read "Joe Thornburg, center, was diagnosed with Chronice Myeloid Leukemia, a treatable form of the disease."

Article here!

Ummmm......

No news is good news! Maybe sometime in the future I can have some plot twists, introduce some new characters, keep you all in suspense. But for now,I don't have a reason to post here every few days. Leaving for Cape Hatteras in a few days with Mom, Brother, Wife, Sister and the GREAT UMBERTO (he is allowed to travel out of Nashville now that he is no longer an illegal alien, thank you Arizona).

On the way down, we will be stopping to see Rog-DM, Q, and hopefully Chowderhead.

Peace!

A shout out!

This shout out goes to Courtney a.k.a."St. Courtney" a.k.a. "Fleet Week." She was the bartender at the hotel in Oil City who made sure the pub stayed open for the thirsty directors. Thanks Courtney!

Happy Anniversary!

Today is my first anniversary! No cake, no special dinner, no going out. One year ago, I was told I had Leukemia. All in all, I am doing VERY well. When I was first diagnosed, I was a mess inside. I read all this stuff on the Internet about "5 year survival varies, but is around 35-50%" I read horror stories of people on this medicine having headaches for days, severe fluid retention, platelets dropping or rising, muscle cramps that would keep people in bed, etc...



I have had some mild to moderate side effects, but nothing debilitating. I have put on weight, but have recently started to exercise to try to fight it. It is still hard for me to look 3-4 years down the road. I just take things day by day now. I have changed some personality wise, for better or worse. I have become much more accepting of people and especially students. I don't fret about little things like my flutes not being able to play a passage as well as I would like, or the fact that sometimes my friends are going to make poor decisions. I enjoy kids idiosyncrasies now and find it interesting to see how they interact with each other. I don't fret about money as much. I enjoy little things like snuggle time with honeybear, or having a Guinness (which I found out and confirmed is considered a lite-beer).

When I first started, I really looked forward to writing on this blog to give you all good news. Now, I just hope I can continue posting every 2-3 months with "nothing is new." I appreciate all the comments from friends and people who have found this blog through other avenues. Alright, now that all the sappy-happy crap is out of the way, time for what you all came here for (no, not hardcore pornography)...cool youtube clips! Enjoy...

Bobsled Top 10

Mr. Rogers Censored

Evan Lysacek Top 10

End of year levels....

I got my end of year levels results and they are still good! WBC is 7.5 (normal is 4.8-10.8, and my first reading was 278). Red Blood Cells, Hemoglobin, and Platelets are all normal. While that news is great, what really pleases me is that my Leukemia no longer dominates conversation during family time. Over xmas, with all the family present, there was about 10 seconds of talk about it. I am now getting to the point where I realize how lucky I am to be responding well to the medication and sometimes, it even seems surreal that I have a very serious disease. Thank god for modern medicine!

Happy New Year!

The holidays are approaching....

Yes it is almost Christmas! As my gift to all of you reading this blog, I bring the gift of timekilling! Here are some of my favorite YouTube clips that you most likely haven't seen. These are not viral, just ones I have found in my travels and though you would enjoy.


This first one is just a cool sax choir that has all 8 members of the sax family...
Sax Choir from England

This next one will bring back fond memories for you Mario Bros. geeks....
Super Mario Bassoon Quintet

And for Xmas, a really cool video of a bunch of college kids singing from 1998...look up there story. They are a definitive YouTube sensation..
12 days of xmas

I could have been an NBA star...

Well, this morning as I lay peacefully in bed, I heard the term "Chronic Myeloid Leukemia" on the TV. I awoke immediately and turns out the Kareem Abdul-Jabbar was diagnosed with the same type of leukemia I have. Kind of cool in its own way. I mean, I can't count the time people have said "Thornburg" and "Kareem" in the same sentence. The evidence is right in front of you. The same smooth drop step. The deft touch around the rim. The silky smooth transition game. The ankle breaking crossover. Its all right there. Our genetic code lets us dominate on the hardwood. However, it also let us down in the marrow department.

On a more seriuos note, I am very glad he went public. Maybe this will become a hot topic and this disease will get some press, more donations etc... Just like what Lance Armstrong did for testicular cancer, Patrick Swayze did for pancreatic cancer, and Michael Jackson did for just plain being a weirdo. It only affects around 25,000 in the US (yours truly included), so its not the most prevelant cancer percentage wise. However, it is still devasting for those who have it. I will gladly accept your donations and put them to good use (roulette wheel). Just tell me which color you want me to bet on.

The Big Switch....

Well, I did it. I had my first appointment with my new hem/onc on Monday. I decided to forgo the treatment at West Penn and went to their rival, UPMC. While much can be said against a huge entity like UPMC, it has some distinct advantages. Their resources are incredible there. They have their own phlebotomy lab right in the doctors office! I don't have to take paperwork over to the outpatient lab (which was below par at West Penn), then wait to have my name called, then wait for the paperwork, then wait for the technician to call me in. The nurse told me they were going to do tests, I went to the lobby, sat down for 2 minutes, then was called in and had blood drawn! My whole appointment (including wait time) took 45 minutes. At West Penn, I would average about 3-4 hours for an appointment (most of it waiting). Not that my treatment at West Penn was bad, far from it. Its just UPMC made the whole experience so much nicer. All is still well here. Counts are normal and the UPMC staff seemed very happy with my response to the meds to this point. Just for fun, here is a cool link to an experiment with wood spiders......

Effects of Drugs on web-building

No updates=No Problems!

Hey all, its me. I am still doing fine. My last blood test was still normal. A slight bit of news is that I am changing doctors. I am switching to UPMC. Why? I just didn't feel good about going to West Penn. If any of you want specifics, please email me. Other than that....Football season is winding down and I am looking forward to returning to my Alma Mater (Woodland Hills) for a band competition. Good night!

RIP Patrick Swayze

Many people loved him in "Ghost." Others for "Roadhouse." Maybe even "To Wong Foo: Thanks for everything, Julie Newmar." My favorite is this one. Hope you all enjoy..

Patrick Swayze Movie

Happy 6 months!

Last Thursday was my 6 month anniversary of being told I have Leukemia. Its so strange to think that it has been that long already. I got a little anniversary present from the hospital yesterday too, my WBC is down to 8,800! Down from 340,000 in March. I have developed mild to moderate side effects to the medication I have to take on a daily basis. Nothing to bad. I have constant dark circles under my eyes (called frog eye), I can't tan anymore (hundreds of little pink and white blotches form on my skin whenever I am exposed to sun), I have edema (the abnormal accumulation of fluid beneath the skin), I get muscle cramps in my hands and feet, and my digestive system goes way out of whack sometimes. The digestive issues consist of a noisy gut where my stomach will make the loudest gurgling sounds I have ever heard, some nausea, and I have a hard time making a normal fluffy. Fluffy you ask? Its my way of saying bowel movement. You know kind of like, "Well, I have had my morning coffee and bran. Time to go make a fluffy!"

The hardest side effect to deal with is the foggy brain I have had. I will just space out completely and forget words, names, phone numbers, etc... Its hard to take because my brain is what separates me from most of you morons.

But the side effects are tolerable. The worst part of the last six months is the constant cycles of anxiety, followed by relief, then more anxiety. When I was diagnosed, I was extremely upset (anxiety). But then I kind of accepted it and was even excited to see the doctor (relief). When I got into his office, I realized I didn't want to be there (anxiety), but he ended up being great (relief). Then I didn't want to take my first pill (anxiety) and then I saw it didn't affect me to bad (relief). Its been like that for six moths. I will have good blood test, and feel great. I will get some news that isn't great and feel anxious about it and worry. I'll be thinking about vacation next summer and then all of a sudden I will think "What if I get worse?" Overall, I think I have adapted very well. I don't let the disease run my life. I take my pills, call my doc with questions, and am very active looking up this condition on the internet. Hopefully the next six months will hold more of the same so far!

Another battle has begun....

I wanted to do something good this summer. I wanted to do something domestic. I wanted to paint my house. Unfortunately, I don't go up on ladders. So, I asked my neighbors to help and they accepted my offer of $1 a day plus 1 oz. of water per hour. My end of the bargain was to buy all materials, and to start to repair my porch which I though would be mainly replacing trim, some molding, etc... Little did I know. What started out as a simple project has now morphed into me considering tearing my whole porch down and spending $$$$$ to have it replaced. I hear your cries. What happened? How did it come to this? I shall explain....

I had a little mail slot on the side of my screen door. I noticed the bottom trim piece needed replaced. I took it out. I noticed then that the whole side piece (about 1' by 2') needed replaced. No problems. Just some quarter round and some thin plywood. I THEN noticed that the floor boards beneath the piece were rotted out. No problem, only about 1 foot of boards needed replaced. I removed them. I THEN noticed that my floor joists were rotting way! I started to remove that wood and then discovered I had carpenter ants. Ugh. I then started going deeper and deeper and further to the sides and I now have to replace about 12 feet of floorboards, am still digging to see how far my floor joists are rotted and found out that one whole corner of my porch has virtually NO support whatsoever, save a few strands of wood the ants and water havent touched yet. SOOOOO, if you have any discretionary income and wish to have your name permanently attached to one of my floorboards please send $$$!

On the Leukemia front, I will go for another round of genetic testing and a mutational analysis to see why the medication isn't working as well as it shoud.

Peace!