Getting ready....

Sorry for going so long without posting folks... I sorta have been enjoying regular life at home. I have gone back to school for the past 2 weeks (I am going to be taking 2 classes). Well regular is a bit of overstatement, because I still haven't fully regained all my strength and stamina from the very extended hospital stay. But everyday I get stronger and feel like I can tackle more and more. There have been definite times where I have gotten overenthusiastic and bitten off more than I could chew... aka trying to hang out at Toledo one night last week (sitting on a bar stool is a lot more work than one would expect...). But all in all I have been doing really really well, and have been feeling really great.

In the last few days though, I find myself getting more and more ready for my next round of treatment. On Friday, I am going in for a bone marrow biopsy and on Tuesday I am going back into the hospital to begin the second round of chemotherapy. When it comes to biopsy, I definitely am not looking forward to the procedure, but as the date gets closer I am starting to realize that I more anxious about the results that come out of it. What we expect is that the biopsy will show that I am in remission and that we can move on to the consolidation phase of my treatment. Rationally I know there really is no reason to believe that the test results show anything but that I am in remission, I mean all signs point to that. But deep down inside, there is just this lingering anxiety that will, and can only be relieved by receiving the results.

It really seems that during my stay at home, the fact that I have leukemia has really sunk in. Everything happened so fast in the beginning that there really was no opportunity for it to sink in.

The one really outstanding thing about starting round 2 is that this isn't my first rodeo anymore. I know what to expect, and I can kinda plan for it. I know that I will be feeling pretty good that first week. The weeks that come after that, not so much. I know that I can have friends bring in food. I've made a list of movies, TV shows I wanna watch (LOST) and book I want to read I better do it early on... because soon chemo brain will settle in and I most definitely wont be able to do those things.

I am really excited by the likely hood that this hospital is going to be much shorter. The doctors expect me to be admitted during while they administer the chemotherapy. Once that is done, and blood levels, and i am looking good, i should be sent home. I will be readmitted in all likelihood as my blood levels drop, but all in all it would mean a MUCH shorter hospital stay. I think everyone would agree that three and half weeks a bit long.

Well thats my story from here for now... :) and I promise I will try to be a more faithful blogger :)

First post from home

Finally to be home.... I really don't think the whole experience has quite sunk in yet. But there is such a comfort and underlying peacefulness to be back here that is just hard to describe.

The most striking thing to me after my return home was that how incredibly weak i still was. Walking up and down stairs is something that is pretty exhausting. honestly though... that was kinda expected... i mean i hadn't climbed up a vertical step since my hospitalization.

What was most impressive was how little brain power i had left. Watching any sorta drama on tv was way to taxing on brain (let alone the season premier of Lost). My brain had really become just a one way recipient of information. not capable of processing or anything, just simply receiving.

Finally though.. yesterday evening it was almost like someone just turned the light switch on. My brain began to function (at a modest pace ;) but progress nevertheless)

As for what landed me in the ICU, is a condition that is called ATRA syndrome. It is directly related to one of the medications that I am taking treat the APL.

During the now the famous gap in blog postings, i began feeling less and less well. Started have tightness in my chest. Cat scans showed clear lungs, but a cardiac echo showed very small levels of fluid around my heart, nothing serious but would be a definite explanation for my discomfort. The plan was to monitor me closely with an ecg manage my pain and expect the fluid to go away. The next day things went the other direction. Morphine didn't really put much of a dent in the pain, oxycotin did for at least a few hours. During the night my heart rate started going up very high, and my blood pressure was pretty low. Very early Thrusday morning a bunch docs and nurses are running in and out of my room. It is clear that something is going on. I call my parents to tell them to get there ASAP. I text a few friends to make sure that some word in my change in condition is going on and that I am being sent to the ICU.

The first fear was that the small bit of fluid of around my heart had actually grown, and accumulated. That theory was quickly dismissed as an echo actually showed that the fluid was actually decreasing compared to the other day. Briefly they entertained the thought that it might be pneumonia, but very quickly they zeroed in the diagnosis of ATRA syndrome.

Things didnt really change until the middle of the first night. When I was receiving a quick sponge bath. I had to roll over on my side, and at that point, it felt as though i was drowning. I honestly have never ever ever felt such terror in my life. Shortly after that point, it was lights out. I do not remember a thing anymore up until a few days later where they extubated me.

That was one crazy ride, one that I sure hope never have to go through again.

Anyhow.... right now i am totally enjoying being home recovering gaining my strength. Preparing for the next round of chemo which should begin close to the beginning of march give or take a few days.

Thanks for all the emails you have sent me! Love you all!

very quick update

I AM GOING HOME today!!! :) :) :)

god i cant wait!!! :)

could be going home

This morning, after a rather mediocre nights sleep, i got the best news anyone could hear... I could be heading home tomorrow... now that has to be the most uplifting news anyone can hear in a day...

After spending about 3 and a half weeks in the hosiptal, including 4 or 5 days in the ICU, wow.... just the thought of some freedom at home, sitting on my own couch and watching my own tv where the channels work (stupid snow storm), sound amazing. Also what really sounds great is to able walk around in the neighborhood. there are only so many routes you can take around the floor to make it somewhat interesting....

I am a lil worried about all the strength i have lost. I have dropped about 11 lbs since i have been here... most of it while intubated in the ICU... you really feel that your legs are really weak.... so rehabing this incidident is going to be interesting....

The awesomeness of people....

I can go into detail about incrediblily awesome all of my friends have been. From helping my folks with things while i can't, to deligently checking up on me and getting the word out of my condition when i can't. All of these things are so emotionally powerfull that just the thought of this is still overwhelming and brings tears to my eyes.... It really is an incredible thing to see that you have behind you a small army of supporters ready do what they can to help you out in your moment of need.

But what is more stunning is running into the nurses when i came back to my old floor... every single one of them would pat me on the shoulder on and say with the kindest of hearts... its really good to see you back here... we were worried about you... i later found out they would quiz my team of doctors everytime they saw them on how i was i doing... such a simple gesture, but such a human gesture will lift you up so high that you dont feel down anymore.... you can't.... you can't let them down.... they have faith in you.... so you need to make sure they know that there faith in you is not misplaced....

I love all of ya more than you can possibly imagine!!!!

arrrrg.....

ok.... Chemo sucks ass..... I have lost most of hair. no biggy but still startling. Havnt slept well for about a week now.... I feel well enough in spurts about thinkng i could be going home and escape this hole, but still not quite....

Where to begin?

Soooo much stuff has taken place over the last week it is becoming hard to phathom everything.

Since my last post of lat week i was starting to feel increasingly unwell...... i had some more and more shortness of breath, some more chest pains.... The doctors took exrays and cat scanns of my lungs, only find them clear. The next day it seemede my condition got worse... i had a harder time sleeping, rolling on sided to side. after an exhaustive nights of tests and more tests. they doctors had seen enough to call it and send me out of my 'comfy hospital room and sent me to ICU.... were only good thing happen right?

Illl post this for now... because i am getting really right about now.... but i just thought that i would want to give you guys something to read about it....

short ant sweet!!!

I am alive!!!!! had some off pretty side effects, but survived them...... i wil fill n wiht much more details laterwhen i have but my arms arround.... for nowits jujst to muhc.

short ant sweet!!!