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!

A redux of sorts....

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!

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

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.

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!

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....

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!

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!!!!!!!!!!!!!

Just felt like I should

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

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!

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.

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!

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!

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.

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....

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!!!