Updates.

So I'm pretty happy.

I had my six month appointment on Monday, August 10 with Dr. Cripe and here are the results:

WBC - 3.7 (low, but not horrible).
Hgb - 13.9 (again, low, but not horrible).
Hct - 39.6 (yep, low, but not horrible)
Platelets - 157,000 (yeehaw, this one actually falls in the normal skew).

Anyway, the numbers above are not really troublesome, but they don't really tell much of a story. At this appointment they also took blood for my PCR-ABL test that quantifies the number of PH+ cells in my body. I can't really explain the scale of which its measured, but I went from a 4.01 in Feb 09 to a 2.04 in Aug 09. In short, the percentage of PH+ RNA molcules was cut in half. Really good numbers are in the 0.00x range, but at least its going down.

Onward and upward.

Me Likely Keithy

Not much health stuff going on right now. I have an appointment to see Dr. Cripe next week which will be my 6 month check-up. This appoint is usually pretty short but does include a CBC and my PCR_ABL test. Keep your fingers crossed - the last one didn't go so well :(.

On a related note - Keith Olbermann had a pretty good commentary that I'd like to share with all of you. Its largely political affiliation agnostic (though with a slight Democratic bend).

Visit msnbc.com for Breaking News, World News, and News about the Economy

yeah.

sorry. been a month. I know.

Guess that means things are going well. April is a busy time around here, my birthday, Maris' birthday, Kris and my anniversary (7 years, thank you very much), Kris' birthday in early May and Mother's Day.

This year I got Kris a kayak for the anniv/birth/mothersday extravaganza. Its pretty cool really - 15' long and inflatable. It's essentially the same material as a white-water raft and designed for two adults (or single if need be). Attached is a photo where we went for a literal dry run. It took about 20 minutes to inflate, but I'm confident we can get that down to 10 now that we know what we're doing.

Good Bye Mrs. Olbermann

Very few people like Keith the way I do. I find him entertaining and at the very least - leaning the way I do. He lost his mom to breast cancer this week and did a wonderful tribute to here. Enjoy.

Visit msnbc.com for Breaking News, World News, and News about the Economy

seriously, has it been a month.

I'm doing fine...aside from an infected finger (which was saved through the miracles of Neosporin), all clear.

I unfortunately didn't plan ahead very well and do not have pictures to post from my latest project, but I'll share anyway. We decided to plant a raised bed garden this year. The kids are now old enough to learn about plants, the planting process, food sources, etc and frankly, I just wanted to do it. I built the beds last weekend out of 2x4 cedar stock - they are just shy of 1' deep and will be filled with Mark's Mix ( a mixture of mushroom compost, peat and top soil ). I have two beds that are 4' x 8' with pvc canopy supports so I can top them with plastic to extend the growing season about a month in either direction.

We started seeds a couple weeks ago and Maris helps me keep them watered every other day. Our beans and peas are already about 7" tall and everything else is coming along nicely ( herbs, carrots, cherry tomatoes, beets, radishes and a lettuce mix ). I hope to get them all outside by mid next week so we can really let them grow. I suspect the beans are already root bound so waiting any longer is not an option. I should have probably waited another month to get this stuff going, but I refuse to wait until July before we can start harvesting.

Anyway - that's it. Pretty exciting - great project ( under budget ).

Next up, religion by John. More soon.

the cure.

Gleevec is not a curative drug. Howevever, a recent study showed that with Gleevec, 86 percent of patients are still alive after 7 years (I know, that also means that 14 in 100 still die in the same time frame).

An article on CNN.com (click here) talks about approaching cancer more as a chronic condition vs curative treatment. In short, treating cancer more like we treat heart disease and diabetes. For me, that's kinda what we're already doing. I often talk about the challenges/mortality of the stem cell/marrow transplant which to date is the only cure. Most doctors seem to think that managing chronic conditions is natural progression in medicine and one that can benefit overall patient outcomes.

So, what do you think?

sooo....

I got my PCR-ABL news yesterday and unfortunately, it wasn't exactly what I was looking for.

The number of PH+ (leukemia cells) was up instead of down. Needless to say, we'd like it headed in the other direction. Its all a little to confusing to understand (Majors, Minors, PH+, etc)

If there is any good news to be derived from this - it is the fact that these results were from the Clarian (local hospital) lab and my other results were from the lab out West (Washington or Oregon I think). In this type of test, the results are very dependent on the lab and the only way they really measure progress is in reductions of the number of cells vs the actual number of cells.

My oncologist seems to think that I am really in no danger right now so we are sticking with the six month routine at which point I'll be tested again using the Clarian lab. His confidence reassures me, however I'll probably have a lot more on my mind in the coming months until we figure out what is going on.

I doubt that I am failing the Gleevec and it should be noted that I'm on the lowest active dose right now so we can always increase it if need be. Still, the news weighs a little heavily on me.

Onward and upward.

Quickie.

I got stuck this morning...

It was only one stick with the usual 3 vials to follow. I'm sick as the proverbial dog so I wasn't expecting much, but I'll be damned - good numbers.

Whities - 4.4K
Platelets - 156K
HGB - 14.6

Hell, I'm almost normal.

I won't get the all important PCR-ABL results back for a couple weeks. The good news is, Clarian is now processing the results themselves so I am told I will know how good or bad things are in half the time. I'd be delighted to hear that I'm in a cytogenic remission or some variant of it. At this point, I think the only measurement isn't really remission and really more of how many log reductions in Leukemic/PH+ cells they find. My first results last summer were terribly good so I am hopeful for a turn around.

Stay tuned.

Still kicking, one year down.

ok. ok. i'm sorry.

needless to say, I'm down to about one post per month (two at best).

In this case, the old adage - no news is good news. I don't go back to the doc until early February and even then I probably won't see blood results back for three or four weeks (this is the test they send out of state to be read). I am hopeful that it will say that I am well on my way to a cytogenic response but have prepared myself in the event that it is not the case. I am still on 400mg daily of the Gleevec which is the lowest dosage so they could probably just increase my intake if I don't get the results Dr. Cripe is looking for. The only downside is going to 600mg daily would increase the cost of my drugs $1,500/month (of which I would still only pay $30) which is probably killing our HR person at the office.

Kristin is hopefully boarding a plane home as we speak. Been a busy travel month for her with a couple trips to NYC and one to Chicago. This in turn means a little more single parenting for me - though our kids a pretty awesome and easy 90% of the time. Even tonight I've got them both fed, read and happily in bed by 7:30 (which is good since our little guys start their day at exactly 6am).

It was a pretty awesome day outside. 12" of snow in fell last night - very much reminds me of home. Only 9 of us made it into the office (3 on time) so it was a really quiet day. I spent the first half on snow removal duty which included a shovel, snowblower and Bobcat and the second half knocking out some boring research that I had been putting off.

Eli turns 5 tomorrow, hope to get some photos of the festivities after the weekend.

Anyhoo.

I'll be around.

just a quickie.

No time to write. Working on my next hobby. Backyard Chickens. Still need to check and see if Marion County zoning allows it, but stay tuned. If you're interested - you can check out some more info here.

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.

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.

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.

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.

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...