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.