The holidays...

We did our part this year to keep the economy going. Lots of great, fun gifts for the kids. Around October, I decided to try and make a few 'heirloom quality' toys for Maris. She had really wanted crib and high chair for her dolls and the stuff in the stores was grade A crap. I spent a couple hours over the last two weekends putting some stuff together that I'm really proud of. It still needs a once over sanding and some poly, but take a look.



We also adopted a family of four through the United Christmas Service. This year we have a single hispanic mom with three boys (2, 6, and 9). We were able to get them coats, hats, gloves, bedding, cookware, towels, toys, books and more. I think it was the first time I every went to Walmart and had two heaping carts of goods. I anticipate we'll deliver this stuff next week and am really looking forward to seeing their faces when we pull up with a van full of gear. Admittedly, we probably over did it on them - but Kris and I are hopeful that we can make this the best Christmas the boys have ever had.

I'm back.

Total Bilirubin - 4.0 (very high, but normal for me)
Whities - 3,800 (low for you, good for me)
Hemoglobin - 14.6 (normal!)
Hematacrit - 40.3(normal!)
Platelets - 167,000 (normal!)
ANC - 1,800 (low for you, good for me)

Chest Xray - normal

Good counts and good diagnostics. Been having some problems sleeping/breathing for the past three weeks, went to see Dr. Cripe to get to the bottom of it.

His recommendation. Slow down. Take some time. Relax.

I'm going to try and do this. Been a wild couple weeks in my personal and work life, starting to wonder if it has taken a toll on my physical health. I have good people around me but I seem to forget that I can't do it all, all of the time.

It's nice to get some affirmation from the doc and his practitioner (Theresa). My only complaint is that Theresa always makes me cry. She tells me it will be ok (which I know it will) but somewhere between her hug and her soothing tone, I lose it.

Admittedly, its kinda unfair. Here I was in the waiting room with essentially a winning lottery ticket as far as blood cancer's go and I'm still worrying about me. Even today, I'm sitting next to a girl probably 10 years younger than me, hair free with a chest port. Based on what she was saying, I'm betting she was only diagnosed a few months ago (she didn't know the jargon but I understood what she was saying). It's a pretty unfair world we live in - and she was living proof.

I can't imagine working in that place.

Cancer get's you an immediate wave but sometimes you have to work for it. For example, when I went to get my chest xray today - the woman at the counter was really busy and a little unpleasant...until she read my chart and they it was almost like 'oh shit, this guy has enough on his plate and shouldn't have to deal with my angry ass'. She pretty much pulled a 180 and was delightful for the rest of our time together.

Better get moving. Feeling better already now that my counts are solid.

what else can i say...

we did it.

and i couldn't be prouder to be an American.

ROFLMAO. (its funny).

John McCain Accidentally Left On Campaign Bus Overnight

Still here.

I know, I know...its been about four weeks since I've posted.

Rather than dwell on the fact that I've been MIA, lets marvel in the fact that I was able to keep it up as long as I had. I mean seriously - I was averaging about 12 posts per month for a pretty long stretch.

All is quiet.

I'm feeling pretty good and have mostly forgotten that I am living with cancer. Certainly I have my moments of fear (and hypochondria), but by and large I am controlling my own destiny and living life.

We had a great vacation about a month ago and we have been going full steam ahead since then. Kristin is in the process of opening a new shop (target of early November) so I've spent most of my weekends building cabinetry for her cash stand, shelving, etc. I enjoy the building - the staining/sealing...not so much. We are going to employ my mom in the next couple weeks to help with painting, assembly and more.

It's great having them in town and it even afforded Kris and I an adult night last week. We had some old neighbors over for a dinner party. It was our turn to host so Kris and I picked up a free-range, grass fed standing rib roast which was just awesome. We purchased it from a local market so we felt good supporting a small business with local meats/produce. I'm all for a global economy, but I like to keep my money in the state if I can.

Kids are doing great and growing like weeds.

Better go. More. Soon.

Three reasons to keep fighting.

Been feeling really great the past couple weeks...which in turn means very few posts to the blog. I have story to tell about the dentist, but it will have to wait until tomorrow...I need to log off for the night.

Obama's Email Inbox Leaked

IMAGE COURTESY ' The Onion '

STATUS

Health, good.
Family, good.
Home, good.

Had a nice vacation last week. I went back to the homeland (Michigan City) and enjoyed a carefree week including visits to the beach, zoo, Redamaks and Swingbellies.

Kris the kids and I were able to catch up with a lot of family while still having some downtime for just the four of us. We staying a in a resort community called Beachwalk which is essentially a bunch of cute, colorful homes nestled in an amazing streetscape. I should also mention that its only a 10 minute walk to a very private part of Lake Michigan.

We can't wait to go back and even talked about buying there someday (very, very far down the road).

I started editing all the video last night - I expect that will take the better part of the week to get trimmed down to the highlight reel.

M.I.A.

on vacation this week. promise to be back soon with photos, video and much more.

seriously, socialism?

Its no secret that I support Barack Obama. I almost always vote democrat because I believe that being an American, everybody should have the same opportunities I did. I had a leg up on many because I had a great and supportive family growing up that afforded me a good education and support along the way - why should only a select few of us have a fighting chance at living the American dream.

(disclaimer, I will be voting for our GOP governor in Indiana this year because of a good track record and keeping his nose out of Roe v Wade, Church/State and Gay rights issues - he's just cleaning up a messy state that can blamed on both parties throughout the last 15 years).

I read a lot about Barack, McCain and the election process as a whole. Some of this is from credible sources, some not - but I feel like I've got a pretty good idea of what is true and what is not. Lately, I've been making the mistake of reading random user comments - more often than not, these people are idiots who like to use phrases like:


NeoCons
Democraps
McSame
Barack Osama
Liberal/leftist

you get the idea. However, I get so tired of seeing the word Socialism.

Seriously, socialism. Here's what the first paragraph of Wikipedia says about it:

Socialism - refers to any of various economic and political concepts of state or collective (i.e. public) ownership and administration of the means of production and distribution of goods and services, some of which have been developed into more or less highly articulated theories and/or praxis.

OK, I'm not sure what all that means but certainly there have to be some good things about Socialism. For example, how about Police and Fire Departments? These are publicly owned entities that benefit everybody. We all pay for them and we all reap the rewards. How about public schools? Again, access to everybody and for minimal additional cost than your property/state/local taxes. I guess what I'm getting at is - why are people so quick to label Democrats as Socialists when in fact it seems like the entire country has had these types of services for centuries.

Don't get me wrong, I recognize that Socialism can certainly go far beyond what I'm talking about and in directions that even the staunchest Leftist (I couldn't resist) would shy away from. I'm just tired of seeing the Socialist label thrown by people who attended public schools, have used police/fire services, or currently collect some sort of aid (social security or medicare for example).

I want to institute a new rule. You use the world Socialism to describe the Democrats again - you forgo your rights to Social Security, Medicare/aid, Police and Fire Protection.

The Data.

I don't have it.

I got the results of my PCR-ABL test yesterday. In short - everything sounds good. However, because I got them over the phone and from the NP (nurse practicioner) I really didn't get much feedback other than "the levels are very low". What levels she was referring to is anyone's guess. I asked that she send over a copy of the results so at least I can see the whole picture. My guess is the "very low' levels are probably the number of active Philadelphia Chromosomes (the 9/22 translocation that triggers the abnormally high white count growth). I had been off my Gleevec at the time so that my explain why there were any at all.

I am waiting for a call back to find out if I should still go in monthly for bilirubin checks and it doesn't sound like I'll be getting a complete blood counts for six months (at my next appointment). I think I'm OK with this since my counts have been pretty stable for quite some time hovering in the low to low normal range for pretty much all categories.

Been a pretty busy week around our house. We are currently in the process of moving Kristin's office back upstairs and have been building furniture, decorating the room and getting the technology all figured out. I expect that we'll get it all wrapped up in the next week and start the process of purging the basement for our next project.

Just 10 more days until our vacation!

My top 3.

Here are my three favorite things.

It was a fair day (pun intended).

I took the kids to the fair with my mom and dad yesterday morning. We figured getting there early on the last day of the event would probably make for the best trip. It was nice, small crowds, cooler temperatures and limited amounts of rednecks. Sadly, Maris was too small for most rides but Eli seemed to really enjoy the three he could go on.

I'm a better dad because of it...

So I picked up our new car today...a minivan. I guess its kinda a parental right of passage...one that was a little tough to stomach. As it turns out - I love the damn thing...Kristin on the other hand is more than a little embarrassed.

Since diagnosed, I started nesting a little more. Protecting things around me with a renewed vigor if you will. I certainly never threw any caution to the wind in the past, but now I like the idea of holing up with my family in our home and spending time together. The van is just an extension of that - side curtain airbags, lower chances of roll-over, four wheel ABS and traction control. Its like driving your sofa clad in armor.

It certainly is not cool, but a nice vehicle at a fair price. I was sad to see the Yukon go, but more in a sentimental way. I was delighted to unload that thing before anything else went wrong with it (and its 12mpg average fuel economy) Admittedly, I'm a little curious how Maris and Eli will respond when I pick them up from school today in a different vehicle than I dropped them off in.

Coming to a theatre near you...

Needed, Neutrophils.

My counts have actually been pretty good for a leukemia patient, but sadly I've been down since last Friday. I tried to use the weekend to recover but it looks like whatever I've got has reared its ugly head again.

I am home from work this afternoon so I can rest up. I feel like I have enough fighter cells (neutrophils) to keep any illness from really taking me out, but not enough to finish it off so things tend to hang on a long time.

I am going to the oncologist on Thursday just to make sure there's nothing else going on that we're missing. It's probably nothing more than a virus but I've learned to expect the unexpected and not ignore my body.

Hemo Update.

Still on Gleevec holiday and my counts remain pretty solid.

Whites - 3,400 (stable)
ANC - 1,700 (stable)
Hemoglobin - 13.9 (stable)
Hematacrit - ? (forgot to ask)
Platelets - 159,000 (relatively stable)

Since these results were processed by a different lab (and immediately), I am curious if the results are directly related. I know that platelet readings can vary based on how long the samples sit.

Oh yeah, my liver. So my bilirubin at its high point 2 weeks ago was 4.9, last Monday it was 4.6 and on Monday it was 3.9. In short - its heading the right direction. It sounds like they'll keep me off the meds for another 2 weeks. They expect my PCR-ABL test to be back by then and we can talk about continued therapy.

I'll take it.

Sorta safe for work.

I'm a pretty big fan of the Comedy Central roasts, most are a mix of great talents and no talents. The Bob Saget roast is no different, however Cloris Leachman kills.

It's just not working out...

How do you break up with a doctor? I need to know by tomorrow because I cheated on mine today and I'm guessing my blood results are going to show that I met with Dr. Cripe today. For those of you coming in late to this dialogue I had set up an appointment with a Leukemia specialist a couple weeks back, and - today I met with him.

The practice was busy, active but surprisingly much more organized. I was whisked away almost immediately after sitting down. This new place has a lab on site and the first thing they do when you arrive is take a CBC. Pretty sweet gig if you ask me - one stop shopping. They did the normal stuff - height, weight, bp, pulse, etc and sent me to an exam room. Next up was about 20 minutes with a med student - its a good primer for meeting with the doc and really gets your mind thinking about all the questions you want to ask.

I did clam up a bit when the doc arrived. He was a little intimidating, but mostly in that teachery sorta way. He explained things very clearly and even left a sheet of notes behind for me. On my way out they decided to take another couple blood samples and even did the test Dr. Dugan sorta did but this time with numbers (not a pass/fail like last time). I should hear back in a couple weeks and we'll probably revisit my bilirubin levels as well.

All in all, a good visit at a good practice with people who seemingly really know their stuff.

Now I need to call Doc Dugan's office tomorrow and let them know that it's just not working out.

Whole damn family.

Been a while since I've added any artwork to the site. In this photo we have Grandmother, Grammadaddy, Bubby, Poppa, Eli and Maris on the front stoop.

Down for the counts (its a pun).

Whities - 3,400
ANC - 1,800
Platelets - 170,000
Hematocrit - 37.5
Hemaglobin - 13.2

Bilirubin - 4.6 (down from 4.9).

In short - my Gleevec holiday has helped lower my liver enzymes and increased my platelets and neutrophils. I'll take it.

I'm guessing I'll be off my meds for another couple weeks to get the levels down closer to normal at which point I'll resume but with a lower dosage (300mg daily). This will save the insurance company about $700 per month so they should be happy with me.

I just got back from the eye doc where they did further screening for my glaucoma. I am still showing some signs but am considered a low risk of continuing damage (not a zero risk, but pretty low). She did a bunch of tests, but the weirdest one was the eye ultrasound. She pokes the surface of your eye in about six places (you are numbed first) and then reads the thickness of your lens. It seems that glaucoma treatment is really a statics game - mostly checking risk factors based on your age, gender, ethnicity, medications, etc. Pretty interesting really.

Raid 1 my ass.

The is sorta a technical post, but at the end of the day - its about doing your job.

My job, as an IT person, is to provide quality service to my end users in a timely manner while keeping downtime to a minimum. To do this - I rely pretty heavily on technology and help from the Gods or RAID. Raid is an acronym that has a couple definitions but they all pretty much mean: Redundant Array of Independent Disks. In my situation - I use RAID 1, often called a mirror. It has a lot of overhead, but should give you the most protection.

I say should because as I waited for my work mail server to respond to a request (I'll cut to the chase, it went unanswered), I was wondering if the RAID had failed. In a perfect world - a single drive would fail and the other MIRRORED drive would pick up the slack. I would then casually come into the office on Monday and swap out the bad drive and the RAID would rebuild itself.

Sadly - it didn't work that way so I'm currently rebuilding a mail server with a new single drive (that I will clone weekly) and restoring from a backup (that runs nightly). Its a hassle and will probably eat up about four hours of my Sunday - though this is preferable to having an outage in the middle of a work day.

Before all of this went down, I was able to have a really nice morning with my super extended family including my mom/dad, Kristin's mom/dad, Eli/Maris and Kristin.

Well, better get back to my restore...looks like the status bar started moving again.

I hate liver.

So my docs think I have something called Gilbert's Syndrome - it essentially is a just an elevated bilirubin level coming from my liver. I've probably had it my entire life - and its pretty benign, you can read about it here if you're so inclined. Most people have a bilirubin level of 0-1, mine happens to normally be around 2.4.

The problem is, lately mine has been just shy of 4.9...which is a big deal. So, I am officially on a Gleevec holiday for at least a week or two. They want to see the levels drop back down to 1.5x my normal level (somewhere in the 2 - 3 range). If the Gleevec holiday achieves this - they will lower my dosage to 300mg daily from 400mg.

Honestly, I'm a little relieved. I've long felt that my body is really sensitive to meds (I'm one of those people that can take a single tylenol and feel better) and am hopeful that going to 300mg will make me less immunosupressed and keep my white levels closer to normal.

Needless to say, we don't want my body to build up a resistance to the drug so going on and off the Gleevec frequently is something we want to try and avoid. That being said, we also want to avoid destroying my liver so in this case it is warranted. Going off the Gleevec for a couple weeks shouldn't affect my white counts too much since women have been known to be off it for months while carrying babies.

I'll keep you guys posted.

lifted.

here's the short story...

I'm dropping off Eli at his new daycare. I put my laptop case (which of course today has my wallet in the front flap) on the floor board, tucked under the seat and take Eli inside. I come back out 10 - 11 minutes later and there is a pile of glass near my passenger windows and of course a missing laptop case (and wallet).

The clean up is a longer story than its worth telling and most everything is fixed at this point including the window, new credit cards, restored computer files, etc.

It's a hassle more than anything - and frankly, I know better having lived downtown for years. Still, I am pretty angry that crap like this can occur just 100 steps from a child care facility on a sunny Thursday morning at around 8 am. Perhaps my biggest frustration is the fact that the computer was locked down and didn't have a power adapter in the bag so chances are it was just tossed after they realized it was useless to them. On top of this - my wallet only contained $12 in cash and when they tried to use my ATM card, the machine took it from them.

I hold very little hope of recourse (other than divine of course).

Anyway - had a good weekend in spite of the drama on Thursday. I cut some more beds in the backyard, spread another couple yards of mulch and got some good time in with the kiddos. I've been feeling good aside from the inability to get any answers regarding my elevated liver levels from my docs.

I'm likely heading to the new IU cancer hospital today to separate some rocks for a sculpture project my company is working. The grand opening is this week so we only have a few more days to get the light rocks and the dark rocks arranged in the grid (this includes about 40,000 lbs of washed river rocks).

Holla.

the deed is done.

I think most decisions are better made when you're still stewing...

So, I made an appointment with a new Oncologist. Dr. Larry Cripe is the Leukemia guy to see at IU Med Center so hopefully I've got a winner...given that I learned my last guy is more of a prostate guru.

To be fair to Dr. Dugan (my current Oncologist) - I was just thrown at him from the emergency room. I certainly didn't have much of a choice as they were sticking a needle in my hip bone and at the point I was probably in a bit of shock (both literally and figuratively). I'm sure he was on call that night and got stuck with me - an overly researched, slightly hypochondriacal patient that routinely assumes he's on his death bed (I'm being dramatic).

Dr. Cripe studied at Rush Med center in Chicago and Duke. More details about him are available here. I think he'll be right up my alley. A big bonus is that IU is part of the Clarian/Methodist network so all my counts, tests, etc are available to them right away. A 2nd bonus is that IU is completing their new cancer center that I have visited a couple times...and it seems to be the Taj Mahal of hospitals, you can check out further details here.

Anyway, I hope I like this new guy and I hope that he's the real deal. I'm not sure how you break up with a doctor, but at the end of the day - nobody cares more about me...than me.

well...

I got my stuff back from Dr. Dugan today. Actually - I only saw Dr. Dugan for about 45 seconds, but his practicioner pulled all my numbers for me.

In short - I'm not sure what is going on. I'm considered to be in Hematologic remission, but the results of my PCR-ABL test don't really tell me anything. It essentially says that I am positive for the chromosome 9-22 transversal (which I already knew), and negative for PML 15-17 chromosome fusion. I guess its good that I don't have any other chromosomes flipping around, but I was expecting some sort of number.

Dr. Dugan said that the numbers become important in the next three months then again at a year. My concern is I think I got the wrong test so in three months they're going to realize that we should have gotten a different one. I also learned the Dr. Dugan is actually a prostate specialist and Dr. Bhatia is their hemo guru. I'm tempted to get a 2nd opinion at this point - I feel like I'm the one doing all the leg work/research and most of the time I don't even get my questions answered.

To top things off, my Bilirubin levels are really elevated. I have been told for years that they're higher than normal, but they seemed really high (and rising) during this last test. I'm supposed to get a call from Novartis in the next day or two to talk with them about this and the glaucoma as potential side effects. For $3,000 per month, I would expect to be less of a guniea pig.

I'm probably coming across as angry - which I'm not. Just frustrated that I seem to be the only one who even reads my blood counts and data.

Grrrrrr...

whewww!

Had a really busy weekend. Lots of projects around the house and for the first time in quite some time...we got most of them done. The biggest job on the agenda was remulching our beds and putting in an edge border. Normally I'm not a huge fan of the borders because they're always cracked, kinked and otherwise unsightly. In spite of this - I purchased 160' of said border and went to work.

My mom and dad came down and helped me plant about 20 perennials in a bed just off our back deck. Kris and I are really happy with the outcome which was capped off with an evening water courtesy of our rain barrel.

Here are three pics from the weekend festivities. I'm just happy that I was able to keep my energy up enough to be a useful helper.

hemo update.

Apparently the Gleevec is still working (maybe a little too well).

Whities - 3,300 (down from 3,400, this is a little low but ok for Leukemia folks)
ANC - 1,600 (down from 1,700, but still in the low normal range)
Platelets - 158,000 (up 8,000 and in the normal range)
Hemoglobin - 13.1 (down from 13.2)
Hematocrit - 37.9 (up from 37.3)

So, even though I'd love to have a few higher counts, I'm ok with this. Only a small drop in fighters and total whites.

I took Eli to Dr. Yancy this morning for a quick physical before he starts his new school tomorrow. He went with me to my blood draw first and I think he felt like he dodged a bullet when we got up and left after only I had my blood done. Little did he know that he was going to get a tetanus and polio shot in his legs 30 minutes later. The appointment was fine and aside from a little eczema, he's a healthy boy. I think he was 48 pounds, 42 inches and all boy.

Kris looks like she has strep throat and sadly Maris may have picked up a touch of it as well. On top of this, Mar and Eli often share a water bottle - it may make the rounds in our house before the weekend is over.

I know what you're thinking...

What kinda of parent allows their four-year-old to run around the yard with a lit incendiary device...



ANSWER: the same kind that allows their two-year-old to do it.

Had a nice 4th weekend. I felt pretty good almost the entire weekend and got a lot of family time in.

An impromptu party erupted in our yard about an hour before the municipal fireworks show. Two additional downtown families and their children showed up and mayhem ensued. I put up our tent in the front yard and all the kids piled in for the show (bribed with popcorn) I'm guessing no less than six fireflies gave their life that night as the kids tried to capture them in the 'bug corral'.

Just one more week until I get my blood work back. I'm anxious, but in a good way...I kinda have a good feeling about it (don't ask me why). It's my first one so the results are just what they are. During the subsequent tests we will hope for something called Log reductions (a logarithmic count of the Leukemic cells).

On the home front, I am currently working on a yard project and Kristin is in the midst of revamping her office. Stay tuned!

mud creek.

The family and I went up to see my mom and dad this past weekend. About 500 yards deep into the woods behind their place is a large creek that Eli has decided is his. We packed up his Scooby Doo fish pole and went angling.

S N A F U

Ok, that's probably being a little dramatic.

Just a quick update. I got back the results of my cardiac ultrasound...normal, unremarkable.

Unremarkable! I am completely remarkable. What do I have left if I can't complain about Leukemia or heart ailments? At least now I can lean on the glaucoma until something else breaks ;-).

Kris and I took the kids to the park last night with hopes of wearing them out. It didn't work. Eli was still up at 9:30 and Maris tested out her vocal chords for at least 30 minutes before succumbing to exhaustion. I know kids aren't like dogs and they can access memories, but fortunately for us - Eli and Maris seem to forget how angry they were the night before and start each day with a smile (and raisin toast).

Followup

1. Cardiologist appointment at 8a - I gotta figure out why I'm so short of breath.

This visit included an EKG (normal), Heart Ultrasound (will be read next week) and a further diagnosis of anxiety. I like this guy (Dr. Kourany), I feel like he listens and is compassionate. I still think there is something going on that both the Cardiologist and Oncologist are missing, but would agree that the anxiety is probably affecting my overall health.

2. Pull Maris' room apart and paint the remaining walls blue.

Complete. Well, I actually still have one wall to complete but I ran out of paint. It looks sooooo much better and brighter. Hard to believe my little girl is growing up so fast.

3. Laundry - Holy crap do I produce a lot of funky clothes.

Sorta, I got a lot of loads done, but none of them folded. Right now I have three baskets of clean clothes getting more wrinkled by the minute. Kris and the kids just headed to the pool so I should probably revisit the laundry.

4. Lunch

Sorta, Kris brought a Jimmy John's sandwich home with her, but it wasn't until 2 so I had already eaten. I think I may revisit said sandwich in a minute.

5. Run to Fuseks for some hardware...man do I like hardware (slide locks, trimmer line, etc)

After my cardiologist appointment, Kris and I went to visit a new daycare for Eli that better suits his needs. It was a great trip and worth of a blog entry on its own. After this visit, I ran to Fusek's True Value and purchased hardware.

6. Dog food. Apparently pets like to eat. Check for Koi or large comets.

Thank you Kristin for picking this up. Apparently holistic dog food is affected by the flooding and corn futures pricing. Our dog food is now $50 per bag! I'll be picking up 10 comets for my mom tomorrow morning before we head up there for lunch.

7. Clean out frog aquarium (he was sent to my Ma's pond for a more spacious abode)

Yeah, this didn't happen.

8. Eye doc appointment. (Ocular health is an important indicator in your overall health).

This did happen. Turns out my meds may be causing me to retain some water in my ocular cavity and thus are causing my left eye to show signs of Glaucoma. Too early to tell, but I'll be back in a month for further testing to see how good or bad the news is. They even talked about doing an eye ultrasound - I'm sure that'll feel good and be cheap ;-). If there is any good news, a diagnosis of Leukemia prepares you for pretty much any news so I'm not terribly upset about it.

9. Home, prepare dinner for the thundering herd.

We got word Thursday night that we had a showing request for 5:30 on Friday. So we cleaned up, packed up the kids, dogs and toys for the trip to my mom and dad's. Dinner was burgers and the running joke is to put mini-carrots in the cheetos bag as to fool unsuspecting snackers.

10. Pass out.

Mission accomplished.

Gotta go - Macaroni and cheese special on Food Network. The winning dish looks to be a poach lobster/Mac n Cheese cake (a la crab cake).

Friday.

Got a lot of stuff in the hopper for tomorrow. I'm taking a vacation day to wrap up/start a few new projects around the house. The list is as follows:

1. Cardiologist appointment at 8a - I gotta figure out why I'm so short of breath.
2. Pull Maris' room apart and paint the remaining walls blue.
3. Laundry - Holy crap do I produce a lot of funky clothes.
4. Lunch
5. Run to Fuseks for some hardware...man do I like hardware (slide locks, trimmer line, etc)
6. Dog food. Apparently pets like to eat. Check for Koi or large comets.
7. Clean out frog aquarium (he was sent to my Ma's pond for a more spacious abode)
8. Eye doc appointment. (Ocular health is an important indicator in your overall health).
9. Home, prepare dinner for the thundering herd.
10. Pass out.

It's Official.

I have a new favorite website.

Dickipedia.org

Its just plain funny. So far, one of my favorite excerpts is from Obama's entry:

Personal Life

Barack Obama is married to Michelle Obama (nee Robinson), with whom he has five children: Sondra, Denise, Theo, Vanessa and Rudy.

hemo update.

Whities - 3,400 (down a bit)
ANC - 1,700 (down a chunk but still decent, normal is above 1,500)
Platelets - 150,000 (down a chunk, but still right on the edge of normal)
Hematocrit - 37.3 (up a tick)
Hemoglobin - 13.2 (down a tick)

In short, pretty decent news. You can look at it a couple of ways, but my feeling is that my counts are pretty good in spite of the medicine and at the very least - my numbers are still under Gleevec's control. The worry would be if my counts really started climbing because then we'd have to revisit the Gleevec dosage or look to other meds.

I've been under the weather a bit so I'm thinking that probably affects my ANC/White numbers. For those of you new to this - the ANC is actually a derivative of the percentage of fighters in your white blood cells. In my case - exactly 50% of my white blood cells are fighters. No too shabby.

oh yeah.

what about maris' bed...yeah, it's done.

keep in mind, her room is currently a wreck because the crib is still in there and we haven't yet found a comforter, but you get the idea.

walk in these shoes.

It's no secret that my health is not the best...and frankly, it's never been all that great. I was blessed with Leukemia, an broken gall bladder (I kicked that fool to the curb a few years ago) and a host of other gastro issues.

Sometimes I'll be driving and see a 60 year-old guy in a convertible and wonder - how is that guy feeling? Is he really as happy and healthy as he seems with his gray mane flowing in the wind. If I could, would I want to switch my body with him. I, of course, try to straddle the line of being positive but still wondering in the back of my mind...Did I get the short end of the stick in the health gene pool?

Don't get me wrong - I wouldn't trade my life for anybody else's. I've got two great kids, a fantastic wife and wonderful family near and far. My dog is loyal and my life is just about perfect in everyway (with one notable omission).

Still, I admit that I'd be lying if I wasn't a little jealous of people who can go an entire year without getting sick, tired, weak and otherwise health compromised. Jerks.

I just got back from the lab where they took another five vials of blood. Today they're checking my Bilirubin, my complete Metabolic profile, a CBC and a couple others. I should hear back on most of them this week but will probably wait until my July 9 appointment with the good doc for the full breakdown.

smart actor?

It's no secret that John Cusak has done some movies that would be best described as turds (Con Air excluded of course). I caught an interview with him the other day and thought I'd share it with you.

He is eloquent, smart and still pretty damn good looking.

retrospective.

I felt pretty darn good this week, though I still have to take that little brown reminder every night. I thought I'd share with you the email I sent to my office that kinda broke the story on my diagnosis. I only do this because I've been reading articles, blogs, etc lately that addresses the topic of keeping the disease to yourself or shouting it to the masses (I chose the latter).

Without further adieu.

First and foremost, I want to thank all of you for the emails, prayers, chi, vibes and such.

It's been a rough week for my family and sometimes its hard to really fathom the permanence of it all.

I'm going to apologize in advance if I rehash too much of what Paul already shared with you - but I thought it might be helpful to help clear some things up.

The truth of the matter is, I have Leukemia - which is a form of cancer in my blood. Unlike like a lot of cancers, I do not technically have tumors. The devices in my body that create white blood cells unfortunately have mutated, so now many of my white blood cells are the 'bad guys'. The problem is, the bad guys are a little stronger than the good ones and were taking over my body. To put things in perspective - a normal white blood count is 5,000 to 10,000...mine was 185,000 when I arrived at the emergency room on Thursday night.

Here's the good news, my count is already down to 85,000. Some other good news is that I have the Chronic Myelogenous form of Leukemia. Sure, I still have cancer (which sucks) but mine can be treatable by what is called a miracle drug (Gleevec). Unlike true Chemo, the drug I take is targeted and only goes after the 'bad guy' white cells that have the Philadelphia Chromosome (I guess that's where it was identified). Its too early to tell how I will respond to this, but most people tolerate it very well. Some other good news is that there are two more drugs that do similar things should I no longer respond to the Gleevec.

As these white cells are killed off, I will be really immunosuppressed and need to keep my distance from all you germ farms. After some time, my body should rebuild with good cells and hopefully get me to a remissive state. My goal is to get back to work by mid next week in a reduced role and slowly build up. I'm going to warn you in advance that I'm going to in and out a lot since I have to give blood twice a week and will have doctor appointments pretty regularly. Additionally, mornings are pretty rough on me as my body flushes out all the dead or dying cells. Please be patient and find somebody else to lift all the heavy stuff. Also don't point or stare since my arms will probably look like a heroin addict with the sticks I got over the past week.

Without getting too morbid - I'm going to answer the question nobody wants to ask. As long as the drugs are controlling the 'bad guys', I'm golden. Every year Gleevec has been on the market (its only been out for about 6 years) the median life expectancy has grown. The second and third tier drugs are just as promising, if not more so. Lastly, since I am so young - I am still a candidate for a bone marrow transplant which is actually the only way to cure the disease but about 3 in 10 die from complications and I'm not liking those odds unless the drugs stop working.

The good news for all of you is that Leukemia typically affects about 1 in 100,000 in the 30 - 40 age group so I've pretty much saved all your lives, again. Also, apparently cutting back on the McDonald's wasn't my secret to weight loss after all. ;-)

Hope to see you guys next week.

- ak

A celebration.

As we wrap up my Tim Russert coverage...I thought we'd have one last entry. Below is Brokaw's eulogy. Frankly, its more of a roast with tears...I'm starting to realize how much I miss Brokaw too.

Wuss.

I don't cry very often.

Frankly, I don't even think I cried when I was diagnosed with cancer earlier this year.

Well that streak has come to an end. When I learned of Tim Russert's death today, I was admittedly shocked. Shocked not because he wasn't terribly old, not because I had just seen him last week on Meet the Press, but shocked because of how much this guy meant to me.

You know - it was only about 10 years ago that I loathed the guy. It would have taken a $20 bill and a McDonalds breakfast for somebody to get me to sit through his show on a Sunday morning. In retrospect - it wasn't about him or even the format of the show, it was about the world. We were in the midst of the Clinton years where most people were living the lives they had hoped for. Strong economy, high world morale and aside from a very questionable humidor - a seemingly well run country.

About a month ago I mentioned to Kristin how much I admired Russert and most of the NBC crew during this election cycle. It was only tonight that I realized how much more I admired the cat. I learned more about this man in two hours than I had in his storied 24 year run on NBC. A hard worker that still remembered that family was number 1. A man that treated the journalism trade not as a competition but as a collaboration. Leadership through mentoring.

RIP Tim. This election just won't be the same without you.

weak-end

Menergy is low, but feeling much better than last weekend.

Made a lot of progress on Maris' new bed this week. It has been assembled and dry fit. I hope to get it primed and painted this weekend for a midweek roll out. I'm 90% happy with it - there are a few things I wish I had done differently, but I think she'll love it. I also need to build a matching one for Eli's room since it has more storage built into it than his current bed. I am going to turn his current bed into a big play table for either Rokenbok or Playmobil.

I'm probably going to pack up the kids and head to my parents crib tomorrow morning for some family time and get back by lunch to start my shop work.

Sunday, my Dad and I are working in the Herron-Morton lemonade booth at the Talbott Street Art Fair. We worked the water booth and trash duty last year and its a nice way to help out without a huge commitment. Admittedly, my favorite part of the fair is having the food trucks parked just one block away. I intend to have corn dogs for all my meals this weekend.

as promised

I'm trying to concentrate on getting more photos up on the blog...starting today. Take a look at my support group. From the left, me, Kris, Sasha, Mom, Dad, Mike and Irene.

Delta

My theory on getting cancer at this stage in my life is really quite simple.

It's all about the delta.

When I go to see my oncolgoist, I am quickly reminded that cancer is largely a disease that affects the 50+ population. Don't get me wrong, I am certainly aware the there are tens of thousands children living with some form of this disease every day. It's horrible at any age, but here's the delta I'm talking about.

The delta, or change between your life before and your new life is really where things fall apart.

Very young children are generally void of responsibility so the change in their life is more about their future and sadly - the delta between their lives and their healthy peers is constantly growing. Their bodies are still developing which can be good and bad. The up side is that a developing body is constant regrowing cells and can readily adapt to the environment around them, the down side is that it can also take them away before they've ever been able to enjoy the world around them.

In the older population...most folks lives have slowed down a bit and amount of activity they would normaly have is less, therefore the delta is somewhat smaller. It's a tragedy that many of these people spent the past 35 years of their lives buried in work only to fight for their lives for their remaining years. Needelss to say, the challenge they have is that their bodies do have as much fight as their younger counterparts.

This brings us to 20 - 40 somethings. I'm in this group so I of course think the delta is the greatest. In this age group - you are expected to be in the prime of your life. You are building relationships, careers and families. Three things that require your full attention...something you are no longer able to do when you're constantly fighting for your health. I look back at what I could do just two years ago and am reminded that I'm a shadow of the man I used to be. For me - that delta is the biggest challenge. The more stories I hear about young folks fighting this disease, the more I think about this.

It's no secret that I have lived a blessed life. I have a wonderful family all around me, we live comfortably and most of those around me are healthy. My challenge is to look past my delta and live my new life.

Best to all of you.

aj

Update.

Been under the weather the past couple days but my blood counts are pretty solid.

Whities: 3,700 (down 200 from last month)
Platelets: 180,000 (up 30,000)
Hemaglobin: 13.7 (down a fraction)
Hematocrit: 37.2 (down a fraction)
ANC: 2,400 (that's a lot of good fighters).

More this weekend, need to get some rest.

oh snap.

I must be getting lazy...another 7 days between posts.

Here's the quick update. My mom and dad are now moved into their new home on the NE side of Indy. It's great to have them so close and we were able to have dinner with them last night at Shapiro's Deli. They came by tonight to pick up their most prized possession, Macy. Macy has been a regular house guest for the past three weeks but it was becoming painfully obvious that she missed her mom, dad and queen sized bed.

Maris has a little bug today (probably too much corned beef). Fortunately - it seems to spared Kristin, Eli and myself of its wrath. Hopefully she'll get a good night's sleep and fee better in the morning.

We had a hell of a storm this past weekend. More than 35,000 lightning strikes were recorded in the Indianapolis area. We had very little wind to speak of, but lots and lots of rain. As a matter of fact, we collected more than 50 gallons of water in our rain barrel on it's maiden voyage. As a precaution, we spent most of Friday night in the basement.

I have my monthly blood draw this week...just a CBC I think. Next month I have my big test (PCR) as well as a more thorough blood work-up. The less I go in, the less I think about my cancer and have been feeling a lot better this week.

I been thinking that I seldom share pictures of the kiddos in my blog...so here you go. Until next time...


Maris cheesin'


Eli in the pool.

another week already?

I will apologize in advance for the lack of updates lately and fact that this won't be a terribly long post.

In short, feeling ok. A little fatigue, a little short of breath but generally in good spirits. Every day I learn how to better adapt to my symptoms and how to get back to being a useful human in our society. I read an interesting article in my Heal Magazine. It helped me justify some of my feelings and let me know that others share my concerns, here is an excerpt.

Treatment successes are pushing more patients into the uncertain territory known as chronic cancer

David Lorber calls each day a gift. Diagnosed in 2004 with a slow-growing form of lung cancer, bronchoalveolar carcinoma, the chemotherapy pills that he takes each morning are a daily reminder that his time is likely to be limited.

When John Elliott was diagnosed with the aggressive brain cancer glioblastoma multiforme in 2004, he was told he had six to eight weeks to live. Now, almost four years later and after a lengthy regimen of medication, Elliott is defying the odds.

Lorber, Elliott and others are learning to grapple with an increasingly common reality, that the cancer experience doesn’t have to be an either/or situation — that either a person is “cured” or the illness is clearly terminal. Rather, the reality of cancer can be an ongoing circumstance — and one often marked for individuals by a weighty uncertainty about how long they can survive with the disease. ...

In short - this gets back to just accepting the things around as they are. Living your life rather than being in a perpetual state of fighting for it and treating rather than curing.

Moving on.

Here is a list of notes from the weekend.

• I finally finished Maris' dresser. So far my only complaint is the moth ball scent. We ordered some drawer liners that we hope will lessen the scent.
• I built a new jungle gym for the kiddos in the yard using our Quadro toys.
• I finally got the stereo installed in Edith. She is appropriately bumping and all is right with the world. The installers did a great job at a fair price. I am delighted.
• I set up an old LCD projector in our backyard and Eli, Kristin and I watched Cars under the moonlight. With drive-ins disappearing - this was a great way to enjoy the outdoors and a movie. Admittedly - Eli cared less about the movie and more about the 'potcorn'.
• My mom and dad are back from Paris for Michael's wedding. I have only seen preliminary pictures, but it looked like an amazing event and I couldn't be happier for Michael and Irene.

I better get moving - lunch is almost over.

Dresser: UPDATE

I think I mentioned that Kris and I found a cool, old Mid-Century modern bedroom set last week. Well, I spent most of last night updating it to Millenium-Modern and you can check it out...right...here...right...now!



If you're curious what it looked like before, you can see the unfinished taller version in the background of the picture. I stripped the old veneer off, veneered the drawer fronts with maple and painted the entire cabinet with a zero VOC organic paint (nothing too good for my daughter).There is still some work to do, but I'm really happy with the way it has turned out.

Coming soon: a pair of big girl beds.

I sure take a lot for granted.

Check out this guy...

So so.

Just got back from outpatient radiology at Methodist for a chest x-ray.

Been feeling ok, but still some shortness of breath so the nurse practioner wanted to take a closer look and make sure the Gleevec wasn't causing me to retain water in my lung and heart cavity. I'm guessing I won't hear anything for a day or two, but will keep you all posted.

I'll wear my Clarian ID bracelet around the office for the rest of the day so I can extend the sympathy a little longer.

We got my mom and dad off to Paris yesterday. I think they were to arrive around 2am Indy time and Mike was going to pick them up at the airport. He called yesterday a little nervous that the three people and all the suitcases wouldn't fit in his A3.

Since my parents are gone - we are in charge of their most prize possession...Macy. She is a great house guest and seldom leaves her bed aside from chow time and the occasional pee break. It's obvious she misses my mom and dad, but we try to include her in family time so she doesn't get too lonely.

On the home front, Kris and I found a cool mid-century dresser set for Maris' room. It had pretty good bones, but needed some updating. Yesterday, I stripped all the old sealer off and veneered the drawer fronts with maple. It still needs paint and some poly, but we hope to have it in her room later this week.



Onward and upward.

i hope somebody else saw this...

eh.

Feeling pretty mediocre lately. Not horrible, just eh.

I'm just going to assume its my medicine mixed with anxiety and move forward.

The good news is...we were finally able to take a family trip in Edith. I don't have the pictures with me, but will get some posted later today. Kris and I loaded the kiddos into the new car seats and we hit the road for about a half hour on Saturday night. The car seats took some searching since booster seats for kids Eli's size rely heavily on the shoulder belt...something that doesn't exist in most cars pre-1980. We finally found a nice seat that Maris can use after Eli out grows it (he's got another 20 lbs to go). Eli and Maris were donning their pajamas and sunglasses for the event and it was a nice way to wrap up Kristin's birthday.

Also this weekend, Eli and I set up camp in the basement for two fun filled nights of sleeping in the tent and roughing it. I managed to find a nature CD online so that we could fall asleep to the sounds of the forest. Admittedly - the owls were a little creepy, but it helped it feel more authentic than sleeping in our backyard where the only nature you hear is some vagrant pissing on my fence.

My mom & dad are officially transitioning to Indy tomorrow. Their house is now empty and the POD will be picked up this afternoon some time. I believe their closing is Tuesday around 11 and they will hit the road to Indy shortly thereafter. Our entire family is really looking forward to having them here not just in the near term but for years to come.

Better get off to work.

Sweet Edith.

Recent addition - Heater core, $260.

Here's another item of interest. Edith gets about 8 miles per gallon in the city. Even though the gas gauge now moves, it really doesn't indicate how much fuel is in the tank. I was filling her up tonight and was getting a little worried that I was filling up the trunk and back seat with gas as the pump turned past 12 gallons.

Sadly, I'm sure she'll have more repairs in the coming months...lets just hope they're small ones.

Mortality and Perception.

It doesn't take much to remind me how lucky I am. Great family, great wife/kids, great coworkers/job and frankly - a pretty great diagnosis if you have to get cancer.

I follow a couple cancer blogs and some are more positive than others. One of the more sad ones, is about a young woman and her fight with Lymphoma. Its an essay she wrote for Glamour Magazine that I invite you all to read here.

Its wonderfully written and can really open your eyes to how to stay positive in light of so many bad things in our lives. I promise, you will at least crack a smile when you read it.

This just in...

Whities - 3,900
ANC - 2,000
Platelets - 150,000
Hematacrit - 42.7
Hgb - 15
RBC - 4.8 (million)

In short, this is great news. These counts are low for normal folk, but up a bit for my new normal. I won't go back for another CBC (complete blood count) until June and a couple weeks after that I'll get my PCR-ABL protein test where they do a blood smear and try to quantify how many Leukemic cells are in my system. A couple weeks ago I checked in with Dr. Dugan and he had a pretty awesome quote about cancer. What he said was:

"In cancer care, we know we can beat the cancer - we just have to wait until science catches up"

I thought it was a pretty decent way to describe it. Needless to say, I am fortunate in that much of science has already caught up with my form of Leukemia.

Back in the real world, Kristin's brother Tom just left after a weekend visit. It was a pleasant trip and nice because Tom is just about as nerdy as I am. We were able to play video games, talk shop and just enjoy the city. The weather was solid so we were able to take a couple cruises in Edith too.

Speaking of poor Edith - looks like she's going to need a little more love this week. I was able to get the exhaust installed last week but now I'm seeing a leak in what I think is the heater core. I'm going to get that repaired this week and probably have the water pump done at the same time since the radiator will be empty for the core repair.

Kris and I voted today and I'm hopeful that Obama will get a win in Indiana. In reality, I'm expecting a 8 point loss based on the state's demographic and a lot of Clinton pandering to rural voters. We will see.

Kris and I will have an primary party tonight after the kids are in bed with some wings, nachos and beverages.

GObama 08.

The Money Pit.

Not really, but why didn't someone tell me that owning a classic car is similar to burning $20 bills. Since purchasing the car, I have:

1. Had the entire suspension rebuilt - $1,600
2. New exhaust - $350
3. New floor pans - $400
4. Audio system - $500 (installed)
5. Random parts - $400
6. Parts yet to be purchased $500 (carpet, panels, etc)
7. Body work yet to be completed - $2,000 (my estimate for work and new paint)
8. RustCheck protectant $200.

It's a pretty exhaustive list, but at the end of the day - the car sure does make me happy. I hope to order a car seat for Eli this week so the entire family can cruise.

I got the exhaust done at Ralph's Muffler on W. 16th St. The work was done pretty well and for a decent price, but I would have paid more just because of their signage. Lookie here:



If you're wondering, his name is Mr. Bendo.

I am going to try and get some quality time with Edith this weekend to get the glove box put back in and wrap up a few loose ends on the interior. Admittedly, after purchasing one classic car - you kinda get an itch to have another. Maybe a 1940s pickup this time...

All clear.

Had my appointment with Dr. Dugan on Friday. It was nice because he only works a half-day and I was his last appointment. I got some good one on one time with him and he essentially told me...relax.

In so many words, I was told "you're great, you're responding well and anxiety is not going to help you heal any faster."

I, of course, agree with him and certainly in my own mind I think I'm handling everything really well. It sounds like I need to pay attention to my body, but don't obsess about little aches and pains. The good Doc also made it clear that most everything questionable I am feeling is related to the Gleevec and not the Leukemia.

Anyhoo. My parents found a house...which is great. I am really looking forward to having them here. Hard to believe that in just six weeks they'll be Indianapolis residents. They have lots of work to do, not to mention a wedding in France to attend so I'm sure they'll be spent by the time this all gets wrapped up.

I got Edith back on Friday after her first overhaul. Thank goodness we have the government rebate check coming because we're in about $1,500 already. I really shouldn't complain because for a 44 year old car, she received a pretty clean bill of health. Most of that bill was for an overhaul of the entire suspension (front and back). The bushings were old, cracked or non-existent so now we have a soft, supple ride. The owner of the shop called her a 'baby doll' of a car. I agree.

She is back in today to have the floor pans patched and next week we'll get the exhaust replaced. From there we'll redo the carpet and get the stereo installed. I guess all that's left after that is to enjoy the summer.

35 and 2.

Maris and I share a birthday today. Her's is the 2 and mine is the 35.

All things being considered, it's been an OK year. I can honestly say that just three months ago, I wasn't sure I was going to see my 35th. Needless to say, I've learned a lot since then and feel really good going forward.

Even before I was diagnosed, I paid pretty close attention to my body. While I was probably a pain in the ass for Kristin as I constantly diagnosed myself on the Internet - I'm glad we were able to catch my Leukemia early enough for effective treatment. The challenge for me is that now I'm even more sensitive to changes in my body at a time when it is probably going through the most changes to date.

I probably need to step back a bit and not let my head run the show as much. I have been a little under the weather the past 24 hours and it just feels different than before. So much of this is getting used to my 'new normal' and not repeating mistakes of that past the lead to panic and ultimately feeling worse. I am going to see Dr. Dugan as a precaution tomorrow, but I expect everything will be business as usual.

No big birthday plans other than to spend some quality time with my family. My mom and dad are down looking at homes this week and to help celebrate Maris' ushering into the terrible twos.

I'm lucky to have so many wonderful folks around me and to have a family that I can't wait to get home to.

The calm before the storm.

EARTHQUAKE HITS THE MIDWEST. Admittedly, it was a little weird and quite unnerving. It was only a 5.2 followed by several 2.x ones and then a periodic 4.x.

At my office, I am sitting under probably 12" of 100 year old concrete and surrounded by no less than 500,000 bricks. All of a sudden a building that is great for tornado protection is horrible for earthquakes. What's more, where the hell do you run - I guess you head outside away from old, brittle structures but the fact of the matter is...the ground is still moving. Apparently, the midwest is ripe for a doosey of a quake and nobody knows when. These quakes are several hundred miles away but the large sheets of bedrock miles under the earth help radiate the energy miles and miles away.

As if I needed something else to worry about...

Health has been pretty good, though I did forget my pill last night so I'll be playing catchup for a couple days. I generally don't feel as crappy as I used to post-pill so this morning may be a little rough, but not enough to send me home.

The weather has been pretty awesome the past week so we've been getting to the park pretty regularly and riding bikes as often as we can. The bike we purchased for Eli last year is a little small now (it looks like a clown bike) so we ordered a new Schwinn for him last week.



Better get off to work.

The Cure.

Here is a real life tragedy. A common man with a great idea, an idea with the potential to reshape cancer treatment as we know it...and it may not be approved for human use until after he dies. It's a great story and worth 12 minutes of your time. I tried to DVR it...but the Masters Golf (don't get me started) went long so I didn't get to see it, until now.

For those of you who aren't terribly familiar with cancer...most drugs/chemo work really well. Sadly, they also take a terrible toll on a body that normally doesn't have much fight left in it. Should this new therapy work - the weeks of recovery after cancer treatment could be gone.

Keep your fingers crossed.

I pee'd just a little.

when i watched this.

How in the world did John Stewart get W. to be on the show?

Had a good showing on the house this past weekend. Sounds like they loved the house and are going to make an offer...except they have no understanding of downtown property values. It sounds like we're only about $100K apart. Needless to say, we don't expect much to come of this.

It's nice to have continued interest in our home though admittedly, Kris and my motivation to move has dropped off significantly as we move into spring.

The Eagle has landed.

Let's get the cancer stuff out of the way.

Feeling pregnant, or what I assume it would feel like. A little icky in the morning, hungry all day and putting on some extra pounds around the middle. In short, hanging in there and happy to be alive.

Now for the good news...the Eagle has landed.



I took possession of Edith at about 3:30pm on Friday. Edith is just a temporary name, so if you have a suggestion, let me know. The delivery driver was great and seemed delighted to help me realize this dream. He backed it down the ramp, collected my check and it was mine. I quickly grabbed my phone and had Kris come out for the maiden voyage. I will first say the Kristin was less then enthused with this purchase...until she saw it. Edith's soothing green sheen and quiet rumble could turn even the deepest frown to a smile. Kris slid onto the aged bench seat and we were off.

Certainly there are things that need attention...and the list grows daily, but that disappears when you put your foot into the gas. For our first trip we kept it close to the house because the 'attention list' includes a non-working fuel gauge and a few other things that dictate just how far we push her.

Here are a couple observations:

1. The car makes you want to cruise. I have no interest in driving this thing like a sports car.

2. When in bench seats, your right arm is called to rest on the back of the bench and your left has to be out the window.

3. People love the car and smile as you drive by...I can think of very few other cars that trigger this response.

4. Vent windows should be included on all modern day cars.

5. Kristin really likes green cars...and bench seats.

I better get going, have to pick up a couple vanilla Cokes before going to the drive-in.

I feel no love.

Apparently Dr. Dugan (my oncologist) doesn't like me anymore. I had my appointment this morning and he said, I'll see you in 3 months. 3 months! How can that be - I need, at the very least, a monthly dose of the good doc. Someone to tell me that I'm great, never looked better. To make matter's worse, he told me he's going to cut my blood visits to monthly (from every other week). Monthly! I crave the data. I need to know that my Lymphocytes are still making up 39% of of my white blood cells.

I told him that its my money and if I want to pay him $100 to talk about how sick I am for 15 minutes, that's my prerogative. It's a sad day, I guess I'm getting healthier which means no more sympathy.

I do go back in about 10 weeks for my first molecular test. I hope to get some mileage out of that, though it's done through a peripheral blood draw so nothing exciting about that. It takes a good 10 days to get results on it so I'll get it done a couple weeks before my next appointment in July. July!

I did get blood work yesterday just to make sure he had what he needed before my appointment today. Here's the data:

Whities - 3,300
ANC - 1,800
Platelets - 124,000
Hematocrit - 40.2 (for those keeping track, normal levels for a man)
Hemaglobin - 13.8 (right on the lower edge of normal)
Red Blood Count - 4.47 (just shy of normal)

In short, blood looks good and my numbers may not stray much from this as long as the Gleevec continues to work. After the molecular test which is called an RT-PCR (you can read about it here), we'll get a baseline of how the progression of the disease has been going. The goal is to get the resulting number to go down on each subsequent test (the test will probably occur every 3 - 6 months).

Aside from all this medical stuff...my impala will be delivered this Friday if the weather stays dry. I am totally amped and hope to be out driving next weekend assuming we can get insurance, plates, title all squared away.



Holla!

Six Fo.

It finally happened...

I think I mentioned that after my diagnosis of Leukemia, I was going to accelerate a few things on my life To-Do list. I got one step closer today when I put down a deposit on the 1964 Impala shown in the attached video.

Eli, myself and uncle Matt took a road trip to Kokomo this morning to test drive it and take a closer look. Sadly for my bank account, it was even better than I had hoped. I'm not going to get too excited until it arrives in my garage, but I'd be lying if I said I wasn't a little bit giddy inside. Hopefully I'll have more pictures next week.

Powerful.

It's weird, but I can almost feel my energy getting back to normal. I have noticed that I am walking faster, feeling stronger and mostly forgetting that I have CML. I have been drinking a new energy drink that I think is making all the difference, you can check out the commercial here (not kid friendly, but funny).

Ok, I'm not actually drinking Menergy - but I do feel better.

Thanks for checking in.

Down.

As promised.

Whities 3,200
ANC 1,800
Platelets 114,000
Hemaglobin 13.1
Hematacrit 37.8

Generally speaking my numbers are down from two weeks ago, though not significantly. I think my whites dropped about 10% and my ANC around 20%. Since the ANC number is more important as a ratio of fighters in my whites, I'm not overly concerned. I don't meet with Dr. Dugan until next week, but I'm guessing they will have me stay the course for and keep up the current regiment. I meant to share this a couple weeks ago, but here is a great little blurb about my Oncolgist.

I'm torn whether a drop is good news or bad. The good news is my meds are working really well and keeping the Leukemia in check, the bad news is my numbers are a little low which can make it a little easier to get sick. The fact of the matter is, I'm happy that I likely won't need to take any additional Gleevec in the short term and that I'll probably just hang around the low dosage for quite some time.

I have good days and bad, but I generally feel solid most of the time. As the weather has warmed, I've been getting outside more and taking care of the house. Doing this really helps get me to a calm place. The only lingering side effect is really broken sleep which in turn makes working through the day a little tougher.

There aren't really too many changes around the house. The showings have slowed down a bit...which is actually fine since the house has been a wreck lately. We took a second look at a house with some nice property but decided that it was just on too busy a street with two littles ones and two furry ones. The hunt continues, though I think Kris and I would be fine staying downtown if we could get the school situation under control. I'm not inclined to lower the price of our home too much and if we don't get much activity in the next couple months, I'm thinking we won't renew our listing until next year. I'm probably making it sound dire, because we've actually had about five showings in the first month so I'm not complaining about the traffic.

Aside from that, my Mom and Dad are heading down this weekend for a visit and it's only a month or so away from Mike's wedding.

10-4. Aaron Out.

Boyz vs Men

For any of you who watched Purdue lose to Xavier, you probably had the same feeling I did; "Did I switch the channel to the local high school kids vs dad scrimmage?"

Purdue fought the good fight...but it became pretty clear that they were freshman and the Xavier team were all men. I enjoyed the game and thought we might have had a chance, but it just wasn't meant to be. It was a great year of Boiler basketball and hopefully we'll get three more years of these hard working kids.

As for my health, I'm feeling pretty good. No blood work this week so I'm a little anxious to hear how my numbers are doing next Tuesday. It's a blessing that my meds are working so well so fast, but I'm still so new to it that I like to have the confirmation that things are going well via hard data. The side effects continue to be manageable and the outpouring of support continues to amaze me.

After a pretty good health run in my circle, I'm starting to realize how unfair the world is. About a year ago, a former coworker was told he had a tumor on his pituitary gland, surgery followed but now it's looking like it wasn't enough. This man is a true gentlemen who I've have never known to be anything but courteous, fair and a great dad of three young girls. More recently a current coworker's husband had been losing a lot of weight and a visit to the doctor led to the diagnosis of with what appears to be pancreatic AND colon cancer. As if that wasn't bad enough, they had their first child on Monday. It's hard to say poor me with so much other bad stuff going on around you. It's a quick reminder of mortality and to be thankful for what you have immediately in front of you.

At the office, the Obama Brigade is in full force with more than 20 people coming and going all day. It's quite cool to be part of something like this (even as an observer), but you can quickly tell which coworkers are for him and which are against ;-).

The kids and Kristin are doing well. As my energy returns, we are able to get back to a more active lifestyle and expect that will only increase as the weather warms up.

No news is good news.

All is seemingly quiet on the health front. Aside from a little funk and the inability to sleep more than three hours straight...feeling pretty good. I had a follow-up with the cardiologist yesterday and he gave me the all clear. Since getting the green light from him, Kristin and I promptly headed to Mug 'n Bun for corn dogs and root bear.

We continue to get showings on our home so that part of our life is promising and I think we've found a new home that will solve most of the problems we looking to clear up (schools, land, proximity to city, design, etc). Its a late 50s ranch on 2.6 acres only 8 miles from downtown. I probably like it a little more than Kristin does, but I think we could really turn it into home. Keep your fingers crossed that we'll get an offer on our home soon so we can get this one before somebody else does.

Some other good news is the Boilermakers made it past the first round of the NCAA tournament. It's pretty easy to be a Purdue fan because in most every sport, they are a hard working bunch that doesn't rely on superstars to carry them. Tonight they play Xavier and I'm not expecting a win, but give me some Popeye's chicken and the Boilers on TV and I'm set.

Speaking of TV, we had been downloading TV shows from iTunes for the Cayman trip and an unexpected side effect was that Eli likes the same cartoons I do. I had downloaded Road Runner and Pink Panther episodes for me and I'll be damned that he'd prefer watch Pink Panther over all the other choices. Sure is nice to have a 4 year-old with an old soul.

Boiler Up!

Eggtastic.

It's no secret that my meds are expensive...but now, I might be able to get them from eggs and at a significantly reduced price.

You can read about it here.

OK, we're probably a long way from this happening, but since many of the drug proteins are harvested in a very expensive and complicated manner, it sure would be cool to have 5,000 chickens cranking out a less chemical version of my drugs. I always knew the McMuffin would someday cure cancer.

It's Official.

The office where I work (which I refer to as my office though I have zero ownership in the building) is renting space to the Obama Indiana Headquarters. I just happen to think this is pretty awesome.

We are told not to expect Barack to grace our presence, but one can Hope (pun intended). Currently we have a dozen or so twenty-somethings pounding away on computers and doing a lot of pointing at maps and such. I think I finally realize why Mr. Obama went after the youth so heavily...free, seemingly limitless labor that has very little professional responsibilities or baggage.

It's smart really, most of these kids' parents are probably in their early to mid 50s and likely Clinton or McCain supporters, but because they're still funding their kids (either in school or through some other promotion of philanthropy) - these parents are essentially funding the Obama campaign. Ok, its a stretch, but I think it makes sense.

The US can't repeat the Bush, Clinton, Bush, Clinton pattern (don't forget about Jeb). Let's hope there's a new sheriff in town...

Movin' on up.

Whities - 3,500
ANC - 2,200
Hemaglobin - 13 (still a woman)
Hematacrit - 37.7
Platelets - 137,000

In spite of my increased Gleevec dosage, my numbers continue to creep toward the healthy range. I won't go back for two more weeks so don't expect a hematologic update any time soon...I know, you'll be on the edge of your chair waiting.

On the home front, Kris and the kids arrived home safely (but late) on Sunday night. I haven't seen too many pics yet so this one will have to do:

Apparently, one of Eli's new skills is the high five. It looks to me that he has mastered it and somehow managed to not catch salmonella from the ginormous sea turtle at the breeding farm. It sounds like much of the trip was spent in the sand, ocean and pool...though I'd be lying if I said it was all sunshine and sleeping. My wife is a trooper, one who has dealt with cancer of a spouse, running a successful business and now traveling out of the country with two kids under five (arguably her biggest challenge to date). I think I'll keep her.

We had two more showings on our house this weekend. I'm really happy we're getting the traffic and am hopeful that we'll see an offer in the next 90 days. Kris and I are going to look at two homes on Thursday, though right now we're not seeing anything we're too excited about.

I've got some more cool news (not health, house or family related), but need to find out if I'm allowed to put it out on the Interweb. Stay tuned.

One more day.

Wooo Hoooo! Kris and the kiddos get home tomorrow. At least, they're supposed to. Given the theatrics it took to get them to Cayman, I won't hold my breath until I actually see them. So far, its sounds like they had a pretty decent trip. Not terribly relaxing for mom, but Eli and Maris got to spend a lot of time with Grandma and Grand-dad and hit the water several times a day. I should also mention that the low temperatures never dipped below 70 and generally stayed right at 82 during the day.

Turns out the fever that Maris had when she headed down was more than just a cold. They packed up and went to the Bodden Town clinic after a morning of crying and found out she had a mild upper respiratory infection and an ear infection. Some antibiotics and drops later and she seems as good a new.

My mom and dad left this morning after visiting for a couple days. It's great to have them here not only for cleaning ;-), but also for support. Now that our house is on the market, I can use all the help I can get keeping it clean for showings. Those two spent the better part of the day on Friday getting this place ship shape and it really showed. We had a showing this morning and have another one Sunday night from 6 - 7. We're glad that we're getting activity but we won't get too excited until we see an offer.

As for me, I'm just taking it easy and trying to stay healthy. I tend to be really sensitive to my body now and whenever I feel a little warm I worry that it will turn into a fever or chills that could send me back to the hospital. I probably need to just accept the fact that its harder for my body to regulate it's heat now which proves to be challenging for my wardrobe.

Better touch up a few things before tomorrow's showing.

I promise.

To not become a link aggregator, but I stumbled upon another video that can give you a lot of hope and enlightenment into common man (or woman in this case). It's about 19 minutes and taken from the TED conference. Dr. Jill Bolte Taylor is a Neuroanatomist (brain doc) who had a severe stroke...but recalls almost the entire event in great detail and understanding. It's a little scary, but a fun presentation that calls you to think.

Got some time? Check it out here.

Quick Link.

I caught a great interview on NPR during my lunch hour today. It's about a Jewish comedian (with a very storied life) who get's diagnosed with Non-Hodgkins Lymphoma. If you have 38 minutes, I invite you to listen. I promise you will laugh.

Click here.

Enjoy.

Back from the Doc.

Just finished up my appointment with Dr. Dugan. I hadn't seen him in about a month so it was good to catch up. As promised, here is the blood data.

Whities - 3,300
Platelets - 119,000
ANC - 2,100
Hemoglobin - 12.8
Hematocrit - 37.5
Protein 6.8
Potassium - 4.1

In short, most of those numbers are good. I still have some work to do on the Hemoglobin...though frankly, I have no control over it. He told me that the reason men should have a higher hemoglobin than woman is testosterone. I explained the Kristin removed that from me years ago...he didn't get it.

Dr. Dugan is pleased with my progress and is going to put me back on 400 mg daily of the Gleevec. I got the impression that they want to keep you on this level to help get you to the cytogenic response. We talked about the FISH test and it will probably come a week or two after my next appointment in early April. He is very matter of fact and in so many words told me that he fully expected it to be "really messed up". They then check again at 6 and 9 months and look for progress. The good news is that this a peripheral blood draw (arm) so no marrow for me in the near future.

In addition to this, I will now only go in every other week for my complete blood count (CBC) and once a month for the rest of my chemistries.

I talked with Kris and the kiddos last night. After a marathon of travel, everybody seems to be having a great time and I'm glad they were able to get away and do this. I wish I could be there for Maris' first time but know that taking care of myself is my most important job so we can try again in a year or two.