Bubble Boy.

For some reason, I managed to get Leukemia during one of the worst flu seasons in about five years. For the most part, my office has been decimated by it, but our household had been spared...until today. It seems Eli has a touch of it right now. His fever has been hovering around 101 and we just juiced him up with Motrin. It's easy to forget how bad you feel when you see your children suffering. At this point, he's just a little warm and some chills, but seemingly in a good mood. Although the Flu shot has been largely ineffective nationwide, we're hopeful that Maris will be spared of the sickness since she was the only one in our house that received it.

On top of everythign else, it's a particularly tough time for me because I just happen to be at my lowest natural resistance level to date. My whites climbed a bit to 2,200 - but my ANC (absolute neutrophilis count) is 900/L, down from 1,200 on Monday. The Neutrophilis (a spelling I'm probably butchering) are the front line fighters in your blood. The reaction I'm getting is quite normal, but the timing is very inopportune. This low number puts me at a moderate risk for infection which could land me back at the ER should I get violent chills or a fever of 100.5. I pretty much always have my hands full of Purell so I'm hopeful I'll be spared, for my sake and Kristin's. My NP also called in a new script that lowered my daily Gleevec from 400mg to 300mg with hopes of slowly bringing my levels back up. From what I've read, 300mg is pretty much the lowest they'll go so this may be the new norm for a while.

I'm still really nervous about getting sick, but I keep reminding myself that despite the fact my numbers are low - it just means the meds are working really well. It can take 3 to 4 weeks for these levels to regulate so I may just resort to IV Purell.

Now that all that medical stuff is covered - here's some good news.

I finally purchased an iPhone. I sold myself on the need to keep all my doctor appointments and contact information with me at all times. But...the fact of the matter is - I liked the idea of having music, photos and phone all in one place. It really is a remarkable tool. Elegant interface, unmatched feature set and a great looking piece of hardware. Even with my technical background, I get the feeling that I'm only going to use about 15% of the features available on it.

Time for some shut-eye.

I'll keep this short.

Not because I don't have anything to write about...but because my man Barack is putting the smack down on some Clinton ass.

Been feeling pretty good the past couple days. I've made it two full days at work and the only side-effect seems to be fatigue at about 8p every night.

I did have a doc appointment today with my practioner Kristi. She tells me that my blood results from Monday are good news. I'm still too green to fully understand what she's saying. My whites are down to 2,100 (which is too low), but the way she explained it to me is that my ratio of healthy ones to leukemic ones is increasing. I think I'm going to check back with her tomorrow and maybe even get another blood test on Thursday just to make sure they aren't creeping too low.

In spite of my confusing blood results, it sounds like her and Doc Dugan are even talking about dropping my Gleevec dosage to 300mg per day. I'm lucky in so many ways, but one of my biggest blessings is that for some reason - my body responds really well to mediations. I'm one of those people that can take a single aspirin and clear up a headache...actually, now I can't take aspirin at all, but you know what I mean.

Ok, I gotta get back to my debate.

Holla!

Easy like Sunday morning.

Well, so far so good.

I'm hesitant to say that I'm feeling better for fear I'll jinx it - but truthfully, I feel pretty good. Had a little nausea this morning, but I think taking my meds after dinner has helped with my energy level and general well being.

I go in tomorrow for my weekly blood letting and on Tuesday to see my nurse practicioner for a checkup. Hopefully she'll also give me a break down on my new blood numbers. I generally go into the appointments assuming no change, no worse, no better. To date, I've been pleasantly surprised, but I'm sure there will be ups and downs. I don't think I'll get my first FISH (cellular level) test until May so it will hopefully be a lot more of the same for the next couple months.

Oh yeah, we got our first 'NOT A BILL' from Methodist for my five day stay. All I can say is, thank goodness for insurance. Our max out of pocket for the year is only $2K...and this visit was $17,000 for room, pharmacy, ER and lab services. I think this includes the bone marrow test as well - but who knows. I assume the doctors charges will be showing up shortly. Keep in mind we have not seen the bill for the MRI, CT, Ultrasounds, Nuke Meds, ECO, EKGs, blah, blah, blah. I'm guessing we're going to come up on $35K real quickly in the coming weeks.

Can't remember if I told all of you - but we are putting our house on the market this week. The realtor came by for about 2 hours yesterday and shot the first two floors. As a matter of fact, the exterior shots are already up at http://www.flockrealty.com (click on houses). Our basement is usually a wreck so we're working on that over the next couple days. It's a pretty terrible market to be selling an expensive home in an expensive 'hood - but if it doesn't go in six months, we'll just pull it off the market and wait until next year. We're not in any real hurry, but it would be nice to get some interest even if they're just lookers.

Kris and the kiddos are heading to Grand Cayman in a couple weeks and I'll miss them terribly. Right now, the activity in the house really keeps my spirits up and takes my mind off the illness. I'm sure I'll find something to do and we should be able to video chat across the gulf most every day. Luckily - she was able to get their flights to line up with her parents so they'll rendezvous in Charlotte and help manage the kids, car seats, toys, bags, etc.

The snow started to melt today and I'm really looking forward to spring since I can no longer regulate my body heat. I am pretty much always cold and have a new found sympathy for all the women at my office who sneak their space heaters under their desks.

Well, time to get Eli to bed, my best to all of you.

Still going.

Been doing just fine the past couple days. Still some shortness of breath and general malaise - but back to society. I've been working about 6 hours a day, but I can't quite make it to 5 anymore. I'll give it some time - though admittedly, I'm going to hate to give up Dr. Phil and Oprah.

I had a talk with my Oncology Nurse Practioner (who's name escapes me) the other day and there something she said that I can't seem to shake. We were talking about the drugs I'm taking and I told her Gleevec and Allepurinol. She seemed surprised that I wasn't taking an anti-anxiety drug and told me that for many, its almost considered a standard of care. I thought for a minute and agreed - there are very few things I expect to experience in life that would create more anxiety than the diagnosis of cancer, especially at a young age. The more I thought about it, I wondered if it would help take my mind off of the treatment and generally let me get back to a normal life where I'm just living and not in a persistent state of healing. I was tempted to say - write one up for me, but I decided against it. I think I need to live through treatment for a while, listen to my body and react to good feelings and bad. I certainly think anti-depressants and anti-anxiety meds have their place in our society, but I want to fight this one on my own for a while.

I promise to do my best to keep this thing updated every couple days, even if it's just a sentence or two about daily life, or the weather.

Sprung.

So. I've been sprung.

Most of the past 24 hours was spent on the portable EKG unit and waiting for my heart ultrasound (ECO). It's always nice to be back in 7South, it's a peaceful place where the nurses are very much like family. It's funny, Nancy wasn't even my nurse for my abbreviated stay, but she still kept checking in to chat and give me updates on my blood work. It sounds like she may have even recommended getting the ECO ultrasound.

It's hard to not feel guilty for occupying a bed that somebody else may need just for my monitoring - but if I have a choice, its the only floor I'm staying on.

Back to me. After the Nuclear Medicine studies, the ECO and the 24 hour cardiac surveillance - my heart is strong. I still have to check back with them in a couple weeks but all parties involved seem to think its a mixture of anxiety, dramatic changes in my blood chemistry and possibly a touch of my medication. They're probably right - but I tend to think its a little more Gleevec than they do. I've been doing my own informal study and feel like most of my cardiac events (palpitations, irregular beats, PVCs, etc) are almost exactly 8 hours after I take my meds. My study doesn't tell me why - but I can only assume that it may be the time when the Gleevec is at its highest concentration in my body. Most mornings I feel better which would fit my hypothesis since the half-life of the drug is about 18 hours.

In short, I'm home...and apparently heart healthy.

Blood work is stabilizing (in a good way), though there are still some numbers that need some work (specifically some of my clotting and platelet numbers). This can take months so I'm in it for the long haul. They started printing out my chemistry sheets for me and it has historical data on it. It is really interesting, but required me to spend about two hours on the Internet trying to find out what the hell all the acronyms are. I'm told it gets even more complicated once we start seeing cellular changes. Then its about percentages, chromosomes, log reductions, and more.

I feel OK now - but its much easier to relax at the hospital when you know you have an emergency button 2 feet away. For now - I'm going to try and keep my mind clear and get good rest. It's an amazing time to live with Leukemia (CML) which just 10 years ago yielded a 3 year life expectancy.

It's time to live the only way I know how - Large.

Another Day, Another...

$4,000. Who knows how much today's tests cost in real dollars.

After all the ER theatrics I had this weekend - I went to my oncologist for a follow up. When talking with them - they decided to admit me for 24 hours and run some test on my lungs and heart to make sure they were functioning correctly.

I think I mentioned on Sunday that the preliminary CT and X-ray showed clear lungs, but as a follow-up they just sent me down to nuclear medicine for some test's I've never heard of.

The first one was some sort of ventilation imaging where I inhaled a mixture of O2 and a Xenon isotope 133. The machine then images the release of this isotope and shows concentrations of oxygen or areas that are not being fully utilized. Apparently the body is smart enough to know that if an embolism or some other sort of blockage is present - it will reroute to a better function area. Pretty cool really.

The second test was an intravenous one with another radioactive isotope. They inject me and then take a series of 8 pictures (2 minutes per picture) as they rotate around my lungs. This shows more about circulation and less about physical anatomy.

Neither test was painful or uncomfortable and when you have Leukemia - people wheel you from location to location on a nice bed. The entire imaging sequence only took about an hour - most of which I spent talking with the technician who was servicing one of the camera units. I was amazed to see that most of the nuclear imaging machines were actually attached to Apple PowerMacs...12 year-old PowerMacs. To put it in perspective, one of the hard drives had just crapped out on one of the units and the technician got a replacement off of eBay. I'm sure Anthem would be delighted to hear that the $2,000 test I just got is stored on a $10 eBay purchase (plus shipping of course).

I miss being home with Kris and the kiddos and am really frustrated that I cannot be more useful around the house right now. I keep asking the question, how much can one woman do and Kris' actions continue to say "all of it".

Admittedly, It's really nice to be here at Methodist in these uncertain times and I can relax while I'm here knowing that my care is unparalleled and I have hundreds of lifesavers around me at any point in time.

The nurse just checked in and told me that my white count is now 5,200. That is another 4,000 drop in the past two days. Most of my other levels are solid so now its just a waiting game until we hear back from the heart doc.

Miss you all.

The Real Sunday.

You'll actually see that I have two posts from today. The first one was just kinda recap of the past three weeks - this one, will wow you with current events and what's been going on for the past 24 hours.

So...its no secret that Gleevec is a miracle drug for some forms of leukemia (mine specifically). I've been on it for about 15 days now. Early on, the only side effect I felt was a little nausea. That has subsided, but some more troublesome one's have popped up. First and foremost - I will say that the Gleevec is really knocking my white cells back to a normal level (I hit 9,000 last night, woot!). This is really just a small percentage of what it does and it can take a very, very long time to see a cytogenic response.

Over the past couple days, it seems that I've been a bit short of breath. More often than not - it occurs just about 8 hours after taking my meds. Last night - again, about 8 hours post Gleevec - I started feeling an irregular heartbeat. I waited about 30 minutes and decided I better head to the ER.

One of the few benefits of having Leukemia is that you get fast tracked at the ER. I had my vitals and was in a room in about 15 minutes. From there they did an EKG (normal by that time), blood work, CT Scan and Xray. Some of the more serious side effects of Gleevec can be fluid retention around the lungs and heart so I wasn't going to risk it. Luckily for me - most everything came back OK and the blood work revealed that I was down to 9,000 on my white count. I did have an elevated level on some sort of clotting test which is why they ran the CT just to make sure it didn't turn out to be some sort of embolism. Prior to this - they mentioned that the Hematoma in my leg being reabsorbed could also affect that number.

So I'm home now, and poor Kristin is along for the ride. The fear of something bigger going on in my body unfortunately occupies my mind too much and may even increase the severity of my symptoms. For me though - its just something I have to go through. For Kristin, she has to maintain her daily life and essentially become a single parent while I get better. It's got to be so much more difficult to be the witness than the patient.

I love her for this and so much more.

Day Whatever.

As advised by my wife, Kristin - I should have started this blog on the day I was diagnosed. Chances are I would have remembered a lot more and would have had a pretty darn good journal of my health over the past couple weeks.

Here's the short story.

1. Calf got big.
2. Went to ER.
3. Checked for clot - none found
4. Treated as Cellulitis.
5. Condition remained the same, checked for clot again.
6. Primary Care doc sent me to OrthoIndy.
7. Ortho ordered MRI, Xray and blood.
8. MRI showed large Hematoma in my right calf.
9. Blood work show elevated white cells (185,000)
10. Directed to go back to ER, do not pass go.
11. Secondary blood test confirmed ridiculously high white count.
12. Panic ensued.
13. Later that day was a the recipient of a bone marrow test (ouch).
14. By 7p that day, I had the diagnosis of Chronic Myelognous Leukemia.
15. Was then told I was lucky and that CML is very treatable.
16. Started treatment on Gleevec, thank you Novartis.
17. Having some side effects from the Gleevec, kinda scary.
18. So there - now you're up to speed.