Joe's Leukemia Blog!

MMR

2011-05-18T08:16:00.006-04:00

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

2011-02-13T00:15:00.002-05:00

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

Good news

2010-12-30T11:10:00.002-05:00

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

2010-12-05T13:10:00.004-05:00

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....

2010-11-01T22:08:00.003-04:00

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!

2010-08-25T17:36:00.005-04:00

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.

2010-08-03T14:04:00.002-04:00

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......

2010-06-08T16:00:00.003-04:00

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!

2010-03-27T17:26:00.001-04:00

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!

2010-03-10T22:03:00.003-05:00

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....

2009-12-31T10:37:00.003-05:00

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....

2009-12-11T16:47:00.003-05:00

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...

2009-11-10T12:52:00.003-05:00

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....

2009-11-03T14:29:00.002-05:00

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!

2009-10-13T18:40:00.002-04:00

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

2009-09-15T12:38:00.001-04:00

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!

2009-09-11T21:51:00.004-04:00

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....

2009-08-24T17:53:00.002-04:00

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!

A redux of sorts....

2009-08-14T00:37:00.002-04:00

Hello all, my name is Joe and I have Leukemia! Its been almost three weeks since I posted here. I have some news that is not great now, but probably will be ok. I got my genetic tests back a week ago and they are not where I want them to be. My PCR test only went down to 16% (down from 18% in April). While that might seem ok, most docs want PCR levels much lower at this point. I have been in touch with my Doc, and I will go for further testing this month. Best case scenario is I stay the course, continue with my current meds and live happily ever after...until my NEXT test! Worst case scenario is I must switch medications and start being typed for Bone Marrow Transplant.

Its funny, this disease seems so darn innocuous sometimes. I feel good, there are no visual signs of disease or sickness (unless you consider a full blown case of "good-lookin-man" a disease). I really do feel somewhat fortunate. I just found out yesterday that a friend of mine will be having a double masectomy, a parital lymph node disection, and both ovaries removed at the ripe old age of 30. All of that due to breast cancer. I can't even begin to imagine the pain she is going through. Once again, make the most of your time! You don't know what lies around the bend.

Still good!

2009-07-31T16:56:00.002-04:00

I just got my CBC back and it looks good. No real changes from the last time. I also had genetic testing done and the results will be available in 7-10 days.

I survived

2009-07-20T13:27:00.004-04:00

Yes. It is me, your humble narrator ($5 to the person who can tell me what movie I got that off of). I am back from vacation. I did very well, thank you very much. Embedded in my genetic code (thank you dad) is a very keen ability to tune things out and ignore various happenings around me. This comes in very handy when trying to nap, dealing with the percussion section during band rehearsals, and most importantly when a 10 year old girl and my mother in law are having a fight about the 10 year old's sunburn and her refusal to put anything on to prevent said sunburn (sunblock) and her reluctance to take anything to soothe it (She cried that the Tylenol was not chewable and her momma always gave her chewable pills).

I also could ignore wife's family idiosyncrasies. A prime example is a trip to the grocery store when we first got there. First off, I must ask all of you in reading land, when you decide to go the grocery store, how long does it take you to physically leave the house? 3 minutes? 5 minutes? Immediately? Not for my wife's family. 45 minutes. That is the elapsed time between the time mother in law said "Ok, I'm leaving now for the store" to the time she actually left for the store. I can hear the murmurs now. What happened? Well, I have broken it down into a readable agenda for you.

2:00 Announce trip to store "now" for 4 items....creamer, ice cream, meat, toilet paper
2:00-2:10 Discuss who is going to store with mother in law, which really involves the three girls arguing over who is going, who isn't going, where they get to sit, pout about not going because its someones turn to sit up front with grandma, and just generally getting a few grown ups riled up.

2:10-2:12 Mother in law and Wife's sister tell girls they are spoiled and to get shoes on NOW because they are leaving NOW and they will be left behind. Also some veiled threats about being put to bed at 7, not going out for ice cream later, etc...

2:12-2:23 Discussion is held as to what else is needed at the store in a futile attempt to prevent future trips to store. Dinners are planned for 10 days, even though we are only there for 6.

2:23-2:32 Discussion on old family recipes and asking around on who knows how to make them or call the relative who does know how to make it. In addition, a discussion is had on "Second Dinner." Whats that? Its the full dinner they make in case you can't or won't eat the primary dinner. "Third Dinner" is always included in "Second Dinner"

2:32-2:35 Abbreviated "discussion" with the girls on why they are still not ready to go. More of a mini-fight.

2:35-2:37 Mother in law asks "Where's my purse?" and "Do you guys need anything?"

2:37-2:41 Search for the girls. Two are upstairs, one is downstairs still pouting about the sunburn she has (remember she refused sunblock, non-chewable Tylenol, and aloe gel cause "it burns") and the fact that nobody seems to care she is on the verge of death.

2:41-2:44 Gather lone girl from downstairs and wait for the other two, one needs to use the bathroom and one needs to switch shoes.

2:45 -5:00 Leave for 4 items, return 2 hours later with 12 full bags of groceries that won't fit anywhere because the fridge and pantry are full from yesterday's trip to the store. Then discuss what they forgot and start planning tomorrow's trip and do it all again!

Thats it! Except for the fact that this happens EVERY TIME they leave the house to go anywhere. Shopping trips are always the time intensive. One time, leaving for the swimming pool (after the girls were dressed) took 40 minutes. A trip to go get ice cream? 33 minutes. I entertained myself by thinking of what to do with all the money I am going to have after NBC picks up the screenplay I have submitted to them about a new TV show.....Gierchak Time!

Pray for me.

2009-07-10T15:28:00.004-04:00

It is upon us. Zero hour. I leave for my first family vacation in 8 hours. Some exotic destination? Vegas? Europe? NYC? Not quite. We are heading to Big Bear Lake, or Big Spring Lake, or Spring Box Lake, or H0t Box Lake, or something like that. I don't know many of the details except this: We have a cottage on or near the lake and it sleeps somewhere between 8-10 people. I get conflicting details about how close we are to civilization and what we are near.

The people who will be vacationing with us are.....
Me!
Honeybear (Wife)
Wife's mom
Wife's sister
Wife's sister's wife (yes, that is correct)
Wife's Aunt
Wife's grandmother
Wife's niece age 9
Wife's niece age 7
WIfe's niece age 11.

I forgot to add wife's sister is undergoing hormonal treatments right know in preparation for having a baby. Plus, only one of the adults drinks and wife's mom believes you shouldn't drink alcohol after 30. Soooooo as you can see, I am in for a great week. I love her side of the family. I truly do. BUT even wife's dad refused to spend a week with all those women, and he is their blood relative. I have been a trooper and bit my lip as I get more details from my wife like:
"We might have to sleep in the same room as the girls"
"I *think* it sleeps ten, but we have to bring an air mattress just in case."

If I do not return and this turns out to be my last post, tell my family I love them and the key is under the doormat.

Great weekend!

2009-07-05T23:04:00.002-04:00

Thanks to all in Pittsburgh (friends, family, email machines) for a great weekend! Had a fantastic cookout with the fam (Wife, Mom, Donald, Aunt Carole and Aunt Andrea) on saturday and a wonderful dinner at The Haufbrauhaus (click on the name for the link) on Sunday with friends. Unfortunately, Uncle Gary was not feeling good and could not make it.

I am easing back into my P.L. life (P.L. = Pre Leukemia). Thanks to Allison O'Keister for the pic at the Hofbrauhaus. There will be another caption contest this week. I am too tired to do it now. Good night, and good luck.

Next Caption contest....

2009-06-30T11:22:00.006-04:00

Take a minute to remember a good time we had together in the past. This might be the last you hear from me depending on the mood of Mr. Darr (in the middle w/purse) when he sees this.

THATS what daddy likes!

2009-06-24T17:08:00.004-04:00

BAM! Bullseye!

WBC 9,200
RBC 5,400
HGB 14,100

In honor of Triumph the Insult Comic Dog (Click on his name!!! It's a link!!), here is a quote...

"Chronic Myelogenous Leukemia is something I have.......FOR ME TO POOP ON!"

And here are s0me more Triumph Links (click on the underlined text to see the clips for you people who have no idea how the internet works on your "email machines!)

Here is a good one

Making fun of Star Wars geeks!

***DISCLAIMER***
I apologize to the many of you who know how hyperlinks work already. You must understand that some of my friends and family who visit this blog needed help on how to read this blog to begin with. I am simply helping them learn some of these new technologies that exist now.

OH MY GOD!!!!!!!!!!!!!

2009-06-13T11:21:00.004-04:00

Just felt like I should

2009-06-09T16:22:00.003-04:00

This blog entry is simply to say....nothing new. No changes in anything, which is kind of weird. I got so used to looking forward to my next test, next appointment, and getting results to analyze the data that I started to live for that and needed it to reinforce that I was getting better. It actually has taken some getting used to NOT doing anything. I'll take it though. The less I here from anyone that has CRNP or DR in front of their name the better.

Here is the next caption contest!!!

CHR

2009-06-01T15:55:00.002-04:00

CHR=Complete Hematologic Response. That means my blood has returned to normal! This last test was very good and I am happy with the results. WBC was 11,600. RBC was 5,000, Hemoglobin was 13,000. Here are some Q & A that might crop up....

Are you free of cancer or Are you cured?
No. This just means my blood is back to its normal counts. Still a long way to go to get rid of all the bad cells.

Do you still have to take the medication?
Yes. Probably for the rest of my life

Why?
While the medication works at disabling the leukemic cells, science cannont say for sure that it kills them completely. This is brand new technology and still in its infancy.

What happens next?
More of the same. Blood work once a month, daily medication, see the oncologist in 6 months.

Why do you still need blood tests?
To monitor the effectiveness of the medication and to insure it continues to work.

Contest #4.....and some light reading!

2009-05-28T19:17:00.003-04:00

So we come to the end of another month, another school year, and the beginning of another summer! All in all, it hasn't gone too bad. I feel good, take my meds and don't let the disease interfere with my everyday life. Whenever you want to know more about CML, Leukemia, or Bone Marrow donation, here are some links you can browse at your leisure.

www.lls.org
www.marrow.org
www.bmtinfonet.org

and here is caption contest #4!!!!

Remember, Thou art mortal.

2009-05-22T22:30:00.003-04:00

Sad news this week. An old college roommate, Bob Honacher, died suddenly of a brain aneurysm. He was 32. This is the second of my former roommates to die of a brain disorder. Shawn Wampler, from Bethel Park, died of brain cancer in 2007. He was 34 at the time. Just goes to show you, make the most of your time!

I am getting a little anxious about next week. I go for a blood test for the first time in a month. I feel pretty good, but you never know. Trust me, when I find out you shall be first to know. Have a good weekend.

Why not transplant now? Contest #3!

2009-05-16T11:25:00.003-04:00

A friend of mine was recently asking about my treatment and why they don't just do a transplant now, seeing how it is the only definitive cure. Good question! The reason is two fold....

1. Even though the a BMT (Bone Marrow Transplant) is the only proven cure, it is not a guarantee. I don't know the exact statistics, but it seems like more than half the people who get a BMT have some type of relapse. In other words, they still have the disease.

2. Even at its most optimistic, the one year survival rate of a BMT in Chronic phase (my phase) is about 60%. If I have a progression of the disease, one year survival after a BMT can drop to as low as 20%. Maybe Natalie and Umberto can explain all the various pitfalls of BMT.

So as you can plainly see, I have a much better chance of surviving with medication than with a BMT. Plus, the cost of transplantation are very high considering all the genetic typing, radiation, harvesting of cells, and post operative treatment.

To show how far medicine has come, my oncologist told me that just 15 years ago, the ONLY treatment for CML was BMT. Now there are three medications out there that work. Hope this helps.

Ok, here is picture number three for the Caption contest!!

Caption contest number 2!

2009-05-08T16:50:00.000-04:00

Our first contest brought about everything I was looking for...laughter, some tears, many smiles and some fond memories. It shows that the human spirit can triumph over the most dire of circumstances. You know of what I speak. Thats right. The Penguins being down 2-0 to the Capitals. So in honor of the three co-winners of the first contest (Dr. Natalie, Dr. Umberto, and Myself) here is the next photo....Caption away!

I was hungry when I wrote this.

2009-05-05T21:28:00.005-04:00

Today I received good news about my PCR. My PCR went from 31% to 18%. PCR measures the ratio of good protein (ABL) to bad protein (BCR-ABL) in my blood. The BCR-ABL protein tells my body to make all these bad white blood cells. The PCR test is a much more accurate measurement of how the medication is working to destroy the leukemic cells in my body. I know, I know I can hear all the screams now...
"But Mr. Thornburg, why did you tell us that your white blood cell count was the way to measure your disease earlier?"

Sometimes, adults must not divulge all the information to children like yourself. The truth is that the extra white blood cells were only the by product of my bad bone marrow. The root of the problem is this mutated protein (BCR-ABL) that is flowing through my blood. It is this protein that must be eradicated. Once the protein is gone, the bad white blood cells will be gone.

Imagine you walk into your kitchen and see thousands of ants (which represent white blood cells) just going to town on your double decker german chocolate cake (which represents your body, no laughs please). You can take your shoe and just crush those little buggers till your hearts content. But they will return as you have not dealt with the source of the problem, the Queens (BCR-ABL) which make those critters and send them out to devour your cake. Once you get rid of the queens (BCR-ABL), the little ants (white blood cells) will go away. Understand now? Good. I need a snack.

Quick update and caption contest....

2009-04-28T17:27:00.003-04:00

So my Oncologist called me today and told me I can stop taking my gout/kidney stone medication. That is good news.

I have a new thing we will try for awhile....add a caption to the photo!!!! Simply use the comment section to add a humorous/insightful/or otherwise clever caption for each photo posted. I will re use the one from yesterday and you shall get about one a week. Ready? GO!!!

A nameless face in a faceless world.

2009-04-27T17:13:00.004-04:00

Ok, that has NO bearing whatsoever on Leukemia or anything in my life right now. I just wanted to sound deep and disturbed, like a true artist.

I went to the Doc's today and he was extremely pleased with the drop in my WBC. He said the blip up could be anything from exposure to a virus to allergies and any other number of things. He took my bloodwork down to once a month and will see me in six months! That is great for me, but bad for this blog. So I am now in the process of deciding on what to put in there to keep you entertained. Any suggestions would be nice. I can regale you with tales of my youth, develop some subplots (like a good mureder/mystery novel), or just post various random crap on here. So lets start with random stuff. Enjoy the pic.

Guess my line!

2009-04-24T16:00:00.001-04:00

Ok so today you will have a choice of three. One of the statements is true about today's blood count. The other two are false.

1. WBC dropped slightly to 16,400. However the hemoglobin and red blood cells continue to rise toward normal and are the highest since my dx (diagnosis).

2. My WBC went down to almost zero, thereby making me vulnerable to even the most innocuous pathogens. I was transported by a helicopter to Pittsburgh and now live in my own protective chamber. I am now officially the new "Bubble Boy."

3. My WBC skyrocketed to over 1,000,000 and I am now in the Guinness Book of World Records for "Hottest guy with a WBC over 1,000,000." In addition, Brian Williams of NBC News called me to put me tomorrows broadcast because of all the humanitarian work I have done over the years...mainly letting Cory Darr get a few points in basketball from time to time and for putting up with an almost-as-smart-as-me-but-bookworm-sister-who-married-a-cool-but-non-dancing-Latino.

Take your time. There is no retest and this will not be graded on a curve.

Hmmmm, that's interesting.

2009-04-21T22:36:00.002-04:00

Well, what would a good blog be without something to triumph over? My WBC jumped to 16,800 today. There are any number of reasons that can cause this so no need to get worried yet. I have been feeling a little worse lately and am experiencing some of the symptoms I did before. I don't know whether it is mental or physical. I shall let you know what happens with my next count. Wish me luck!

Close, but no cigar...yet

2009-04-17T16:43:00.002-04:00

Today the WBC was 13,900. Only a drop of 4%, but still a drop. On the plus side, my red blood cells are almost normal at 4,400 (normal is 4,700-7,000) and hemoglobin was at 11,800 (14,000-18,000 is normal). Keep in mind, they want me in normal range in 3 to 6 months and I have only been on the meds since March 13th. Enjoy the weekend.

Unforgettable, in every way.

2009-04-15T17:11:00.003-04:00

So today my WBC was 14,500. Its getting closer to normal. My Hemoglobin and Red Blood Cells were also down, so I am a little tired.

So when I got my results last thursday, the lady who got my results looks at my file and says "Oh! I remember your blood! You were in pretty bad shape!" Kind of strange how lab workers relate to people. I am now the person with really really bad blood to her. During our conversation, she said that my blood was so bad, she had to "cut" it (I guess with a thinning agent) at a ratio of 4:1 to get the machine to be able to count my WBC. She also said that it was probably the worst she can recall of at that time. Woo hoo! She seemed kind of surprised that I was up and about and able to function quite normally and even more surprised at the drastic reduction in one month. I just told her my dashing good looks and charming personality were helping in the treatment of the disease.

On a related note, I have had more than a few people comment on how its wonderful that my personality has been unchanged and how good I look. One person even said I was an inspiration and they want to know how I do it. So now, as a gift to you all, I will tell you how you can look and be like me. Ready?

You can't. My superior genetic make up is to blame for my awesome rock star persona, swimmers build, and strikingly beautiful face (think Brad Pitt, only taller.) So you are all out of luck. However, you are all lucky not to be me. Its not a barrel of monkeys living my life. For instance, you can all feel sorry for me because of the nasty side effects I experienced today....I was tired and took a nice nap, and my pinkie toe aches a little bit. Woe is me.

Anyone can comment now.

2009-04-13T20:15:00.009-04:00

Ok, so no updates. I have received many letters, emails, and comments that basically say "I want to comment on your awesome blog, but don't know how." Well, now anyone can post comments without having to register for anything. Here is how:
*Simply click on the "Comments" link under any entry and enter your post
*When you are done, click on the "Comment as" box under the entry and select either "Name/URL" or "Annonymous" (they are at the bottom of the pop up list)
*Thats it! Post till your little hearts are content. If you are going to say something mean, please be courteous and sign it so I know who to leave out of my will.

And for Easter....

2009-04-11T09:52:00.002-04:00

WBC on thursday was 21,000. Very nice drop. I must go clean my room now since we all know that the Easter Bunny does not leave full easter baskets at houses with messy rooms. And if Honey Bear (wife) doesn't get her chocolate, its not going to be pretty around the house.

My Pancreas...

2009-04-07T15:57:00.002-04:00

Some of you might reacall how happy I was with my glucose (blood sugar) leves in "There Will be Blood." My levels are always normal, so for now I am not diabetic. In order to pay homage to the proper organ, here is a song heralding the "Biggest Little Organ in the Human Body."

http://www.youtube.com/watch?v=kEodu4yLSzw&feature=PlayList&p=61E78A349ECAEB6B&playnext=1&playnext_from=PL&index=37

When I Find myself in times of trouble, Mother Gleevec comforts me...

2009-04-07T15:30:00.003-04:00

Today I received a call from my hematologist with some great news. My WBC is now down to 30,000! Plus, my Red Blood Cells (RBC) and hemoglobin (HGB) are inching higher toward the normal range. Leukemia produces millions of white blood cells and they crowd out all the other good cells, thereby making you anemic. I should have known someting was wrong because during basketball, I could barely make it up and down the floor 3 times without gasping for air. In my prime, I was good for at least 4 trips, 5 on a good day.

I also received a second opinion yesterday, well actually two. The first was from another hematologist at UPMC. He said I was being treated exactly how I should and he would do the same thing. The other was from a friend who I shall call JI. JI texted me yesterday and said (edited for content)..."I have your second opinion. You are still an A**hole." Nice.

I am nowhere near out of the woods yet. The reduction in my WBC is great, but it could turn later on down the road. However, it has restored one thing that I have lacked since March 10th at 4:10 PM...HOPE!! Thanks to all who talk to me about it, pray for me, write here, etc... It helps a lot. However, my hematologist suggested each of you donate one paycheck a month to me. Seems a new study has suggested that a sudden onset of monetary wealth brings about remission much quicker. Barring that, I will still accept prayers, good luck wishes, etc...

Peace for now

I like.

2009-04-05T10:09:00.003-04:00

WBC for friday was 67,000. I like those results! Don't have much more for you all now. My NCAA brackets are destroyed and I heard gleeful cheering from the Nashville area last night, so I am melancholy/tired.

In english please!

2009-04-02T14:11:00.010-04:00

Ok, so here is the scoop about Chronic Myelogenous Leukemia (CML) in my own words. My sister (Natalie), who works with a great Hematologist/Oncologist, can verify these in the comments section. For fun, I have put two "facts" in there that are not entirely true. See if you can guess which ones they are.

*For simplicities sake, there are two main types of Leukemia. Acute and Chronic. There are many other subtypes. I have a form of Chronic Leukemia. Myelogenous refers to the type of cells involved. Dr. Natalie can explain more in the comments section.

*Chronic Leukemias are slow growing and are usually fatal in terms of years. Acute Leukemias are very fast and usually become fatal in months rather than years

*There are three phase of my type (CML): Chronic (beginning), Aggressive, Blast Crisis (Bad). They believe I am in the Chronic phase.

*Left untreated, it would take 3-5 years for me to progress to the Blast Crisis phase.

*I take two pills a day for treatment. One is targeted cancer therapy (Gleevec). The other (Allopurinol) is to prevent gout and kidney stones from forming, which are side effects of Gleevec.

*I have blood drawn twice a week to monitor the medication's effectiveness.

*In order to insure proper absorption of the Gleevec, they recommend you take it with a big glass of Chianti and 12 chicken wings.

*Gleevec can put CML into remission for a long time (many years), but will never cure it. The only cure is a bone marrow/stem cell transplant.

*Gleevec has many of the same side effects as chemotherapy, but not as pronounced.

*I can live a normal life and am not prone to severe infections at this stage.

*My form is very rare. Only about 4,800 new cases are diagnosed each year. Of those, only 15% are people under 40 ( I guess I should start playing powerball!).

*It only affects the most intelligent and best looking people on God's green earth.

*Besides Gleevec, there are two other approved medications which work for CML. They are Sprycel and Tasigna.

*Chemotherapy and radiation are very ineffective for CML, so they are not a treatment option.

A history of things to come

2009-04-01T22:10:00.001-04:00

So the question begs, how does Leukemia affect you? Leukemia, left untreated, will cause (among a host of other maladies) massive weight loss, a paling of the skin, and a lethargic, dopey look. The picture below demonstrates this.....

I am on the left. Look at me. Bright eyed and bushy tailed. Nicey bronzed. Happier than a thirsy kitten chasing a leaky cow. The girl in the middle represents Leukemia. The person on the right represents me after a few years of untreated Leukemia. Gaunt, pale, lazy. This poor guy just spent a whole week in the North Carolina sun and that is the best he can look. I don't want that for me. Please, whoever is listening, if I ever get like that, just pull the plug.

****Disclaimer*** The photo above is fictional. Any resemblance to any person alive or not is purely coincidental. The person on the right is NOT Pete.

Isn't it ironic, don't you think?

2009-04-01T13:16:00.000-04:00

Well even better news today. My White Blood Cell count has gone down to 117,00. Guess the medicine is working! On a lighter note, I want this to be entertaining and educational. So you have had enough about me weeping and all that crap. Now two little stories that are funny now...

1. I went to my friend Jamie's house for the AFC Championship game in mid January. I wore one of those Steelers "Skull Cap" that look like a swim cap. When I walked in, he just started laughing and said "You look like a d*mn cancer patient undergoing chemo!" Little did we know then.

2. I have a "complaining" buddy. No names. I will just call him BZ. We complain to each other all the time about various ills in our lives (politics, money, illness, etc...). Most of the winter, I was complaining about being tired. In order to stress to him how tired I was, I liked to quote Old Man River. You know the verse...

I gets weary, and sick of tryin'
I'm tired of livin', and scared of dyin'

Lets just say I have retired that saying for a while.

There Will be Blood

2009-03-31T21:19:00.001-04:00

For those of you non-scientists, (everyone except Natalie and Umberto The Great) you should know that a normal White Blood Cell Count (WBC) is between 4,000-10,000. On March 10th, mine was 275,000 (hence the diagnosis). On March 12th, it had jumped to 340,000. As of last Friday (3/27), it had gone down to 177,000. No where near normal, but a lot better. I now must go get blood drawn twice a week until they say otherwise. Its not bad, so I don't complain. On the good side, since I am a man of generous proportions, I always envisioned my sugar being way out of whack. However, my glucose level was a perfect 87 every time. (Applause, thank you). You all wish you had my awesome insulin producing pancreas!

My very own Bone Marrow Biopsy!

2009-03-31T21:05:00.002-04:00

"But Mr. Thornburg," the children yelled, "What is a Bone Marrow Biopsy?" Let me break it down for you all or y'all if you are from West Virginia. The first part (called the aspiration) is where they jam a big, hollow needle into your hip bone and suck out marrow. The second part (the actual biopsy) is where they take an even bigger, hollow needle and bore out a piece of bone and marrow together. If I were to rank this procedure in a place of my "to do again list" it would be above having a toe nail removed and right below having a toe nail partially removed. Oh well.

Because the doctors moved fast, I was in a specialists (Hematologist/Oncologist for those in the know) office two days after I was diagnosed. He came up with a diagnosis of Chronic Myelogenous Leukemia. For those of you who like to read, you can do so here http://www.mayoclinic.com/health/chronic-myelogenous-leukemia/DS00564.

The Doctor was very cool and the staff was great. The Doc tried to convince my wife that lifting laundry baskets and housework would cause me to go into some type of Leukemia induced coma, but she didn't buy it. He put me on Gleevec (http://www.gleevec.com/). We laughed, cried, hugged, and expressed our inner most desires to each other. He invited me over to his house for dinner as his "Coolest Patient of the Month." I, of course, declined seeing as how there was a Sheetz right down the street and my Honey Bear (wife) just LOVES Sheetz. The twinkle in his eye led me to believe he would either be seeing me soon or maybe he just had a glass eye from some horrific needle accident as a young resident. I don't know which.

How it began-Part 2

2009-03-30T21:53:00.001-04:00

(lights blinking, time to sit down to catch act 2)

Ok, so I have Leukemia. First call I made? Not to family. Too hard. One of my Co-best men at my wedding, Tom. He knew something was wrong. I texted him earlier and told him it didn't look good. I called and let him know right away. He was shocked. Next call? Sis. I don't talk to her often and of course she was also in shock. Next one? The other Co-best man, Jamie.

Jamie's response deserves its own paragraph. The previous night, Tom and I called him and let him know he was putting on some weight. He was not happy with us and didn't like hearing that from two guys who weigh 80-100 lbs more than him. So when I called Tuesday, his response was basically "Yeah, right. F*** you." Our call got cut off then. I tried to call again and he was in an area with bad service and just said the same thing again. I got a text from him about twenty minutes later saying "I really hope you are kidding." I called and told him I was not. I wish I was joking. I wish this was some elaborate prank. It wasn't. I found out after that he opened up his bottle of Captain Morgan and proceeded to drink the rest of the night without saying a word to his wife (who I texted the news to, and who urged me to go to the doctors just 3 days earlier) for a couple of hours.

The next call I think was Mom. God that hurt. Dad died 14 months earlier from colon cancer and now I was telling her her son had Leukemia. It went great! I only had to say it six times through uncontrollable sobbing for her to understand me! Go me! The rest of the night was just calling people who I thought should know right away. Some friends, some family, my principal at school so we could get a meeting together to discuss what would happen in case of a prolonged absence. Its a blur now. The only good thing is that my wife and I did so much sobbing that we were drained and did manage to get sleep. So now I am going to try and patent this new sleep-aid...Uncontrolled Emotion! (Women's fragrance by same name to follow soon.) The next time any of you just cry yourself to sleep, please send $19.95 to Joe Thornburg, 408 Chase St, Kane PA 16735.

I went to work the next day and was really out of it. I made it through the meeting with the other teachers and the administration. I didn't do much with the students. Just enough to keep them occupied and didn't tell them a thing. That night Tom and Beth came over and we got some wings and pizza and tried to take our mind off it. It did the job for a few hours. Next chapter will be the Hematologist/Oncologist visit!

How it began-Part 1

2009-03-30T20:58:00.000-04:00

Yes I have a disease. I have always been semi-closed off so its hard for me to say this in person to a lot of people. So if I may borrow a line from the late Jim Croce...

Everytime I tried to tell you, I sounded like a frog.
So I guess I have to tell you, in my Blog.

Okay, this first one will be long. How did I get here? What were my symptoms? Why did I go to the doctor? It wasn't the worst I had ever felt, but it was just a combination of all these symptoms that led me here. Here we go...

I felt tired all winter. I always liked a good nap, but there were MANY times I needed it or I would be in bed by 8PM. I had some nagging coughs/sinus infections that never got serious and never went away. When I would play basketball (and of course dominate) I would get extremely cold after and then burn up at night. I also developed night sweats. Then a pain and swelling developed right below my ribcage on my left side. It was very uncomfortable at times. My wife tried to get me to see the doctor and I made an appointment for mid February. But of course, ALL the symptoms went away as soon as I called. So I canceled.

Then on March 7th, we had friends over and one who works in the health field heard my symptoms and said that I needed to go ASAP. So I called on Monday and told the answering service my symptoms. Withing two minutes, I had a call back and an appointment for that day with the doctor (extremely rare for flu season). That was the first sign something was wrong.

The Doc sent me for blood work/Chest X-ray/Ultra sound of my abdomen on Tuesday morning. He set up an appointment for Friday to discuss results. That same day, the doctors office kept trying to reach me at home and at school. They basically said "We have been trying to reach you for 20 minutes. The doctor needs to see you today." I knew then it was bad.

I would like to say I took it well. I would like to say it didn't affect me. I would like to, but I can't. I called my wife and couldn't even speak the words to her. I finally blurted out something to the effect of "Its bad. They want to see me today. He cleared his schedule after 4:30 for me."
I left the school in tears, I went home. I did a little (lots) of weeping. My wife came home and we cried together for a time.

At the office, he took us right away. The conversation went exactly like this...
Me: You found something, didn't you?
Doc: Joe, it's Leukemia.

Bam! March 10th, 2009. 4:10 PM. My life suddenly took a whole new direction than what I had planned. After conferring with him for awhile, he told us exactly what he wanted to do. He wanted me treated in Pittsburgh. He was referring me immediately to an oncologist who would either treat me or refer me on. To his credit, from the first call on Monday, he was on top of EVERYTING. No waiting for appointments or test results, no questioning the legitimacy of tests, he worked fast and wanted to get me treated that week. He was honest and said what I had was not something he could treat himself. To be honest, I didn't exactly trust him 100% before. I do now. God bless him. To be continued so you all can get something to drink.....