So others can run

Almost a year ago a sequence of events began to unfold that would change my life forever.... On January 13th I received a phone call saying that I had Acute Myeloid Leukemia. The next day I was in the hospital. Over the next 6 months I spent 62 days in the hospital, 7 days in the intensive care, spent 3 days intubated, had 2 pericardial effusions, one requiring to be drained.

And I am the lucky one.

In all likelihood I will stay in remission and my cancer will never return. I have my life back. I can do everything that I did on January 12th. And that is something so many people who get the same news I got can never say.
Let me share some sobering numbers with you. In one year, about 12000 people in the United States will be diagnosed with Acute Myeloid Leukemia –and of those 12000 people 75% will be dead in the next 5 years.

That is how lucky I am.

Knowing that, I am sure you can understand why I have to do this. I need to do something to repay the debt of good fortune that I have received.

One of those things I have chosen to do is to raise money for the Leukemia Lymphoma Society by competing in a Triathelon in Columbia MD on May 22nd. Through the LLS and this event I can help fund the vital research that will help all people with blood cancers be cured and be able to enjoy a normal life -like I can.

Over the last year I have learned more about life love and friendship than I did in all my life before I got sick. You all have been such a pillar of strength to me throughout this ordeal. You lifted my spirits when they needed lifting. You provided laughter when I needed it. You brought me food so I wouldn’t have to eat hospital food. You brought me gifts, sent cards, decorated my rooms… and for that I am so unbelievably grateful…

Now I need your help once more… Please donate, to help others be as lucky as I am now. So that they can also run in a triathelon too.


Thank You

Stem cells

Well after much delay, we began the process of harvesting my stem cells in the event that I get a recurrence of this leukemia. Considering how bumpy and unpredictable this road was, this is a very reassuring process for me to go through. It is particularly awesome to have a plan for the possible worst case scenario.
Anyhow, we had initially wanted to get this done early August, but that was complicated by insurance issues. My carrier and the George Washington University Hospital did not have an established relationship for Bone Marrow transplants. It took a few weeks, but they reached an agreement. So that’s pretty awesome.
So finally we get the green light get this process underway. 4 Days before the start, I have to start giving myself Neupogen injections to stimulate the bone marrow to reproduce. This is the same drug that I would get after each round of chemotherapy to boost my immune system and shorten my naders. The idea is that if they get the bone marrow to reproduce so quickly it will run out of space in the bones and will therefore be dumped into the blood stream, where it can be easily harvested.
On Tuesday, the day before the harvest I went down to the hospital to have a central line placed in my neck. This is most definitely not the convenient of places but it hey… its only a few days right? That procedure was simple enough. I had been through enough things similar to it that I didn’t need to be sedated (this thing doesn’t hold a candle to a bone marrow biopsy). The consequence of this procedure is that I have 2 huge lines coming out of my neck each wider than a drinking straw. Honestly, I feel like a juice box for vampires, they won’t even have to bite and they can suck all the blood out of my jugular. For the first day and a half it was really sore around the site where they placed it. But with Tylenol 3, that made things ok.
Finally, we get to main event, the harvesting. This actually is a simple and painless procedure. They hook up your neck tubes to a machine that extracts your blood, separates into its different elements and it filters the layers that it needs with the stem cells in them. And then the machine gives you back the blood that it didn’t use (how nice of it). In one session, this machines processes my entire blood volume 4 times to extract about 500ml of blood stuffs. I have to say, it’s all pretty cool stuff.
After every day, the extract gets counted to see if they have enough of right kind of cells they need. So far we haven’t gotten to the right number yet but we are hoping that this third day of harvest will produce enough cells to reach our magic number.
The only remaining issue is whether they left me enough platelets to have my neck accessory to be removed today. As much as I enjoy it, I would rather have it out for the weekend. But oh well… that really is the least of my concern right now.

So what’s next?

The question about what is next is very much an open one. I guess it is much easier for me to go over what is known. Over the next few weeks I will have my stem cells harvested and stored in the unlikely scenario that my leukemia returns. After that, I am gonna begin the maintenance part of my treatment. This likely involves me taking that drug ATRA that caused all that trouble for me in the beginning. Well, ‘caused’ isn’t the right word… I guess involved in all the trouble would be a better phrasing. But this time, as I take this medication, we are going to keep a very close eye on how my body reacts to it. I go into this stage of treatment with no anxiety or trepidation. I doubt that anything will happen, and even it should, I have all the confidence in myself and the doctors around me that we will get through them just as we did everything else.
In a way, the answers to what is next for me medically are the easy answer. Its what I have been doing for last 8 months now. But I am quickly running out of medical goals. Beyond them lies such a huge and vast unknown that used to be intimidating to me, but now, it really isn’t. I am going to wrap to the classes that I have left over from the spring semester and then polish up my resume and go out and look for some work. For what? I am not 100% sure. But I would like to see what is out there working in the cancer community, at the very least, as a volunteer. I have just gone through something that not everyone goes through. Might as share my experience and what I have learned with others that going down a road similar to the one that I went through.

Coming Home

I am just on my way home from a wonderful trip to Germany, Austria and Belgium where I met up with family and friends many of whom I have seen for the first time since I have been sick. It was quite an experience to see people in person again after only hearing from them over the phone or over email. It is really funny to notice how everyone of them seem to give you the identical greeting. They flash you the biggest grinning smile you have ever seen and seem to give a hug, gripping you tighter than usual, almost as if to make sure you really were still there. They then look at you with disbelief saying how good and normal I look, somewhat stunned that I show no outward signs of what I have so recently gone though. I guess everyone builds their own mental image of what is going on from far away. The moment they see me, they have trouble reconciling the mental image of a sickly cancer patient, with the one of a normal person. It was just funny to notice how uniform and consistent this reaction was.

Normalcy

2 and a half months huh? It’s been way too long…

Where do I begin after so long? Well I guess I good place to start is with what has been happening. The short answer is absolutely nothing. Well… That’s not quite true, a lot has happened, but everything has been slowly returning to normalcy.
My last dose of chemotherapy, and my last day in the hospital was on June 1st. Like all the cycles before I did fine for about a week but then the chemo kicks in and my blood counts bottom out. Like the last the round I managed to get through it without spiking any fevers and therefore managing to stay out of the hospital. You can imagine how nervous I was, not because I was worried that anything bad would happen, but I just didn’t want to go back to the hospital. I was done. I had enough. Luckily I managed to through the nader without anymore complications.
A few weeks later I was feeling strong enough to host a party for my friends. That was so incredibly cool to be able to hang out with all the people that helped me so much though this journey.
Exactly a month after my last dose of chemo, I took my first trip. I flew to Calgary to go to Kim and Gavin’s wedding. That was such an amazing experience. Being out there in beautiful Alberta, for such a beautiful occasion, seeing so many great friends who I hadn’t seen but who were so unbelievably supportive of me and helped me through my ordeal, was almost too much for me to handle. Things were so raw, and still and the memories of the hospital were still so fresh. Was that actually real? Was I really in this beautiful place? Did the last 6 months really happen? Were they just a bad dream?
Honestly, I was still pretty tired at that time. My body still hadn’t recovered from all the chemo. Walking up 2 flights of stairs was enough to get my heart racing. A few days after the wedding a couple of us decided to drive up to Lake Louise and go for a hike. We had talked about it for a few days, I was still pretty uncertain if I could do it. I was a little worried. If walking up the steps gets my heart racing how am I going to get though a hike in the mountains? At some point, I don’t remember when, I had an epiphany. Fuck it. I was in Calgary. I decided that I was going to do the things I wanted to do, cancer and chemo be damned. What was there to lose? If I couldn’t get up the mountain, I would just turn around and go back to town. There was nothing to worry about. So we set out on our hike. It was a fantastic time. The scenery was so beautiful there, in fact almost spiritual. The hike was tough I had a bit of a hard time keeping up with my buddies. But I trudged along at my own pace, took a break when I needed one, and just kept going. Sure enough we got to the top. That was my statement. At that moment it became clear to me that I was back in charge of my life now. And that my friends, is the most amazing feeling. After that hike, nothing was the same anymore. This was my life. And I was gonna live it on MY terms.
A few days after I got back home, I had my bone marrow biopsy. This was the moment of truth. Where we would find out for sure if things have gone as expected. A week later, on July 22, I heard the most beautiful words: “No Detectable Leukemia”. At this moment, I knew for sure that what I felt in Calgary was in fact the truth. This was really my life now.
The weeks that followed are actually quite uninteresting, and that is the beauty of them. I spent most of the time catching up on schoolwork that I was unable to finish while I was sick. I started exercising again, going out with friends, enjoying ballgames, staying home and being lazy. These things are so normal and really uninteresting. And that’s the beauty of it. The beauty of normalcy.

The last dance

Wow... What an incredible feeling... I am in the hospital now, getting my last chemo treatments... Let me repeat that... I am getting my LAST chemo treatments. This chapter of my life is hopefully coming to end, and i have to say it is very emotionally overwhellming.
The most incredible feeling was yesterday, when my doctor informed of his plan to harvest and freeze some of my stem cells in off chance I get a recurrance of this dissease. This way, should i need a bone marrow transplant, I would be able to be my own donor. I mean how cool is that? Amazing what is possible these days with medical technology. But the most incredible thing for me was that it directly addresses something that was begining to creep up --What happens if it comes back? I mean beyond the bravado, about kicking cancers ass, and killing leukemia, kicking ass and taking names, is the very real and ever present thought about what happens if this comes back? This plan that my docs are formulating really does go a very long way of aleviating that for me. They have come up with contingency plan for me, that we hope and expect to never use, but there is no way i can describe how reassuring it is to have it there. 

I don't understand...

Wait... something went smoother than expected? This doesn't compute...

Well this is exactly what happened! I managed to get through this latest round of chemotherapy without having to be bounced back to the hospital. I have been out of the hospital for 2 entire weeks and feels like an eternity. Turns out it is a pretty tough job keeping yourself at home. I had to go the outpatient clinic everyday for 7 straight weekdays. There they were able to manage my low blood counts, by giving me a few transfusions of platelets and blood to top me off until my body started making its own again. I was able to avoid any infections while my immune system was nonexistent, by staying sequestered at home for a week, and taking some antibiotics -just in case. And there we go! thats all you need to do! The problem with this strategy is that ended up spending so much time on my old worn out couch that I ended up with some pretty bad back spasms. To add insult to injury, the only thing that I could take for it was Tylenol because my blood was so thin. Anything else would end up thinning the blood more and put me at risk for bleeding. But with a lot of Tylenol and heating pads I got through it :)
By the time Friday rolled around, my immune system had recovered and the magnitude of this accomplishment had begin to set in. For the first time since this ordeal began in January something went soothly. Not just smoothly, even better than expected. After every round of chemotherapy you have to expect to spend a few days in the hospital. Most people pick up some sort of infection while they there immune system is compromised. But nope... not me this time. No cardiac issues, no nose bleeds or bruising, no trips to the emergency room, no drains or tubes, and most importantly no intensive care... (knock on wood)
This weekend, it really started to sink in that this act of my 'adventure' starting to draw to its conclusion. I am very aware that there is still a long road for me to go after this, but the anticipation of being done with chemotherapy is starting to sink in. Just one more round. I will be free to plan things as I wish, not trying to fit things in between hospital stays, not trying to anticipate when my blood counts will tank, or worry about the guy who just sneezed near you. I will be free to live my life without having Leukemia as its centerpiece. Its impossible to fully describe, but a giant weight is in the process of being lifted off my shoulders.

In about a month, I will have my life back. Wow... That is something that is very hard to understand right now...

Heading onto the finishing straight....

In watching the Kentucky Derby yesterday evening, I couldn't help but see a parallel to my journey. Right now I am starting to see the finish line of my own race. I am starting to come around the last turn, and heading onto the finishing straight. As this chemo cycle draws to a close, I am finally allowing myself to look a little further ahead, beyond being a Leukemia patient, beyond the next chemo cycle. I haven't let myself look to far ahead though, since my journey around this track has been anything but smooth, but for the first time I can start to see a light at the end of this tunnel.

There really is a certain sense of relief and excitement to start to think about the end. For weeks I have been thinking how I can't wait to get my life back. But what is starting to dawn on me is that I am not really sure what my life is going to be like when I get done with this. This disease has been so far in the forefront of my life, has woven its way into every single one of my activities, it is really hard to imagine it not being there. I have sort of developed a dependence on the leukemia, it has been really the only thing I have allowed myself to really focus on. It really is going to be odd to not have this foe to focus on and direct your energies toward. But I most definitely relish that challenge :) of starting new and fresh in a few weeks time.

But for now, I still have some more work to do. I have 2 more doses of chemotherapy to get, tonight and tomorrow morning, before I get sent home. I still have to ride out the nader from this cycle, and I still have to get myself to the last round without complications in a few weeks time.

But it really is nice to start to allow yourself to think beyond being a leukemia patient. Just not too much... Yet...

I believe in the power of the cookie...

Ever since the last admission due to the pericardial effusion, I have been pretty deflated. Running into these constant complications really do take there toll on your psyche. It also is tough to being back in the hospital only a 2 weeks after you just spent a few days there. The whole experience had begin to wear on me... I had been admitted 5 times, and only 2 of them were planned... It most definitely was a grind it out few weeks.

But as the days got closer to my readmission for round 3, i began to settle in to a more positive mood... things were moving forward in the direction we needed them to go... But oddly enough, the night before I was being admitted back in, i got the most incredible fortune in my fortune cookie. It read "It is not your character to up". This random, goofy little note was enough to lift my spirits and get me into the right positive mind frame what was ahead of me.

I got checked back into the hospital at on Wednesday morning. As usual, I have no difficulties tolerating the chemo itself. So so far it has been a very uneventful eventual admission (knock on wood). Before I get sent home on Monday, they are going to perform another cardiac echo to make sure everything remains all clear with the pericardial effusions. So hopefully we can avoid having any other recurrences of that.

Well that is all from the 5th floor of George Washington University Hospital for now...

I am most definitely pretty thrilled to be entering the final turn of this treatment. The home stretch doesnt seem that far away anymore :)

Ok... This game isnt fun anymore....

Well again I first need to apologize for being so absent again. Since my last round of treatments things seemed like they were finaly going according to plan. I did have to spend some time in the hospital after the last round of chemotherapy to receive platelets and some blood. But that was expected. I got home and was able to resume a regular life again. I was going to school, went to some hockey games... all in all i was getting ready for the next round.

Then, last Friday I began to notice that I seemed to be getting more and more tired as the days went on, not more and more fit as one would expect. That night I noticed minor chest pains while I slept... Things started feeling eerily familiar to what had happened to me a just 6 weeks earlier. Could I be having another pericardial effusion? I pushed that question out of my head for as long as I could --and that was just one more day. On Sunday morning I woke up and was having noticeable shortness of breath and a racing heart beat. I couldn't deny it anymore... it was time to go back to the emergency room.... Fuck....

After getting to the hospital, I walk up to the counter of Emergency Room and explain to them my problem. Not waisting a minute they shuffle me right to the back where i sit on a gurney. Not even a minute goes by before nurses and doctors start showing up asking questions, poking me with needles, strapping me to several machines, hooking me up to oxygen. 15 minutes into my ER stay, they were performing an ultrasound of my heart, and yes, I did have another pericardial effusion, there was a lot of fluid around my heart...Again... Fuck...

I got transfered to a bed back in the Leukemia wing of the oncology floor which was nice. I got to be back amongst the familiar faces that have taken care of me so well, and been so kind to me over this past year. That night was far from restful. Although I was in a lot less pain and distress than earlier in the day thanks to oxygen and some of the anti-inflamatory drugs they gave me. I recieved constant visits from residents checking me out. It did feel good to be looked after but seriously does it have to be at midnight? Oh but it got better... They decided that 4am would be a good time for me to go down to get a CT scan of my chest. Seriously??? 4am??? I just was in a nice deep sleep... The awesomeness of this adventure continues... Fuck...

On Monday things moved along at the usual deliberate pace at the hospital... everything seems to take ages there. In the afternoon we finally hear from the cardiology team that want go ahead and drain the fluid... not to much later I get taken down to cardiology and they start getting me ready for this procedure... My personal favorite is when they hook me up to an empty oxygen tank, and the nurse spent 5 min arguing with me whether or not the tank was on. As for the procedure itself it went really really quick -- probably less then 15 minutes. I will spare everyone the gory details, but I will say it was not pleasant. You are given some novocaine where they insert the needle, and some relaxant, but you are most definitely conscious and very aware that they are working on you. Once they were done they show me a one liter bottle that is half full of clear almost urine colored liquid and tell me this is what we drained from your heart. It really is stunning to physically see the volume of fluid that was sitting in your chest --it really is no wonder that my pulse was racing and I had trouble breathing. The next surprise was that they were going to transfer me to the ICU as opposed to my old room. Turns out that the nurses on my floor weren't comfortable with the idea of having to monitor a drain coming from my heart. In all honesty, I completely understand there position -they were oncology nurses, this is not something that they do day in day out.

Once in the ICU, and after I hooked up to about 100 different monitors coming from my chest and each limb, I am able to relax somewhat. I imediately notice that I am feeling much better. I guess it is not at all surprising considering the volume of liquid that they removed from my chest. The only thing preventing me from breathing normally was soreness from the procedure itself.

The ICU really has to be the least restful place on the planet. You really don't get much sleep because people are walking in constantly, one alarm or another is going off, and the fact that you can't really move very much. That really was the thing that got to me the most. By the time Wednesday rolled around, I was feeling much better, hardly any fluid was coming out of the drain they had left in, yet I was still tied up to all these wires and cords. Every movement I made had to be calculated so that I don't accidentally tie myself to the IV pole. It really was time for me to go. Luckily the doctors agreed. I was being sent home once again!

The excitement and the joy of going home was somewhat dampened by the frustration of running into complications all the time. Why wasn't anything going smoothly whit this process. And what on earth was causing these cardiac effusions all the time? Our initial theory that this was caused by the ATRA that I was taking was obviously false -I hadn't taken it 6 weeks. So yea... This game wasn't any fun anymore...

The countdown begins.

I most definitely am starting to get a little antsy, because i am gonna get sent home tomorrow morning :) I have had absolutely no issues with receiving the chemotherapy this round (knock on wood). Which for me is a huge milestone :) I does seem like I have hit every possible complication in the book so far. What a relief.

Later this evening I will start getting the last dose of chemo for this round with one more early in the AM and then pretty much as soon as I am done... I am supposed to walk right out the door. I actually almost makes me want to pack my bag tonight, but I think i am gonna hold off until tomorrow morning... Don't wanna jinx anything :)

All is good...

Things are going well here.. Just completed the first day of chemo behind bright and early this morning. 2 more to go...
Made sleep a little bit challenging since they had to plug me in for second dose at 5am... but hey... no biggy :)

So now the name of the game is very simple... just wait... I have 36 hours till we start more chemo, and if all stays on track i could be set free on Sunday morning :) I would probably be home only for a few days, and they will bring me back in as my blood counts drop from the chemo... but anyhow... any day home is awesome...

I know the few weeks ahead are gonna get tough as the chemo does its work... but like all things... This too shall pass...

I am just thrilled to be one step closer to being done... :)

Cleared for takeoff....

After a 2 week delay, I got the all clear yesterday from my doc to start round 2 of chemotherapy today. I woke up really early the past few days with a real sense of anticipation and eagerness to get this show back on the road. It most definitely is time to get this plain back in the air.
It really was a relief to hear from my doc that the effusion around my heart had almost completely cleared last week. Those steroids sure do work when it comes to stuff like that, but wow are the side effects impressive. almost done with them now... so hopefully my body will be able to gain some semblance of normalcy... They make your muscles waist away... since i have been out of the hospital again, i have lost 5 or 6 pounds despite having a ravenous appetite. you look down at your legs and you see how much smaller they have gotten...

Let me tell you... this is one weird journey...

However the biggest change for that has happened over my 'maintenance' layover is that i have a calmed down a lot about it... I avoid sweating the small the things that are out of my control and try to roll with punches (not always the easiest thing) I am not really planning things for far ahead (actually thats a lie... i am planning dinner orders for friends to bring by! i have a list!) but when it comes to treatment... complications... when i am home.. when i am not... I can't follow the minute by minute... this is too complicated... I am simply trying to focus on being a good patient, with a positive attitude.... The ONLY thing that i am focused on is getting to my destination which is to be cured from this disease... How i get there i dont really care... and i am not gonna worry about it. I have full confidence in my oncologist, and my super advocate radiation oncologist mom :) I have the best support network on the planet sending good vibes :)

Life is good... Chemo round 2 is a very good thing... :)

as for now... i am gonna finish packing my bags and wait to get called to the gate...

Just a quick hello...

I just wanted to drop a line to all of you guys and try to keep radio silence to a minimum.

Things have been going really well on my front... The steroid treatment that I have been receiving to drain the fluid from heart is working well, and we seem to be on track to take another crack at round 2 early next week. The real telling signs that this working for me is that every day can do a lot more without feeling winded... of course i am doing things at my own pace... definitely slower than i would normally do.. but hey its my pace and thats how fast i am going...

It was funny the other night I went to my first Capitals game since I got my diagnosis and it was really fun to be out there... but that setting where I spent most of the season briskly walking up stairs, or hustling through the concourse, was quite reminder how different my strength and fitness at the moment... I was definitely taking my time and meandering around a bit as i tried to stay out of everyones way... didnt really work too well, but i really dont care :) i had a good time at the game.

Yesterday I took advantage of the last of the predicted good weather and did some some pruning in the yard to clear away some of the storm damage from the blizzards, but most importantly went on lengthier walk with my folks along the C&O canal here with my folks to celebrate there anniversary :)...

It has been a very few good days to rest and recover, but also do things that are not leukemia focused... :)

Take care everyone... i will have an update in a few days... :)

The road forward....

I am doing well... On Saturday morning I managed to negotiate to be released on my own recognizance waiting for the fluid around my heart to drain. Ever since I began taking the steroids, I have been feeling much better. No more chest pains, no more need for pain pills, but must importantly my pulse has been going -meaning my heart is working less hard. Once i made my case to my doc, he agreed to run it by the cardiologists and they agreed i was safe to go home!!! Victory is mine!!!! I managed to have a great weekend here at home, and I am sure all of you would agree that any moment at home is much better than in the hospital.

As for the road forward... First thing in the morning tomorrow, i am gonna call the scheduling office to schedule another cardiac echo to see how much fluid is left around my heart, to see if we need to draw it off with a needle. In any case the second round of chemo is going to be delayed until this all clears up. But i am kinda preparing for the end of this week. In a way, i am really eager to get back in finish what we were supposed to do last week... It is really important that we keep this treatment going with minimal delays, but there is question that now was definitely not the right time to start a round of chemo. In all likely hood, i will be taken off the drug ATRA that seems to be causing me all this trouble. There are several other drugs out there that are just as effective out there at curing this disease.

As for me I am definitely coming to realize that there is no easy road with cancer. There are unexpected twists and turns at every corner it seems like. Some of them pretty darned scary. But I can really only see one way of dealing em' which is take them one at time, go one day at a time, and believe that every day that goes by brings you just one day closer to being cured.

Today for me is a great day... I am feeling good and getting even better, I am at home :)... and most importantly I know that i am in remission. Those are the things that I am focusing on... As for what happens tomorrow... i guess i will find out tomorrow... I can't really look much further ahead, simply because i have learned that there is no way that I predict exactly along which path this road is going.

one step forward... one step back...

So yesterday everything was moving forward for me to get my chemo in afternoon. No more fever, got my central line, confirmed it was in the right place. now all i had to wait on was getting an CT Scan of my chest to make sure there were no problems, since I had been having some chest pain over the last few days. I was convinced I just pulled a ribcage muscle... but i was slightly mistaken... a substantial amount of fluid has built up around my heart and is most definitely causing the pain.
I am gonna be little more judicious in what I say next, because you never know who is reading this, but there was a bit of 'mismanagement' on who delivers the results and the treatment options to you. The first person to come was physician assistant for a cardiac surgeon to come in explain the surgical procedure that want to do permanently remedy the situation. Excuse me what? will someone please explain to me what exactly the situation is? It was clear that this team was totally unaware of my history and the intricacies of my diagnosis. I am surgeon, I have knife, lets cut...
Needless to say my mom was not was pleased, and was adamant to me that I should do nothing at the moment. We need to talk to my doc who familiar with ins and outs of my case and this RARE disease... What we think that this a recurrence of the ATRA syndrome that landed me in the ICU last go around. That is our hunch... not and official diagnosis. But we are treating it the same way we treated last time with a lot of success...

I just want to be clear that I am doing fine, I am still in my regular hospital room, I am stable, but watched very closely -i have to wear a portable EKG at all times, which is about the size of a 1980's cell phone- my vital signs are good, my breathing is good. The chest pain sucks, but they gave me oxycodone for that and it helps out a lot, i can breathe deeper, sleep on my side with no pain, and yes, the fact that it takes an edge off does help out too.

So we will see what today brings... i mean these are without a doubt some anxious moments, but I been through those before... you just take em one step at a time and move forward from there... Hopefully this cardiac issue gets resolved in the next few days, and in a few days and we can get started with round 2 of chemo. This means a longer hospital stay than planned... but hey at least there is a reason for that now.

Sooo to wrap up the other days airplane analogy... after sitting on the runway for hours waiting to take off... you get clearance, barrel down the runway and slows down... pilot comes on intercom... sorry folks mechanical trouble... back to the gate to fix em... you are annoyed, frustrated, but sure as shit happy you are not flying in a plane that has mechanical problems...

the most beautiful word in the English language

is REMISSION!!!! I found out yesterday the results from my bone marrow biopsy and I am officially in remission... hearing that word was the most amazing moment of my life... it felt that in an instant a 1 million pound weight had been lifted off of my shoulders. That whole weekend I became increasingly anxious and impatient about the results... The uncertainty of the results was the real torture...

but hey!!! the news is fantastic!!!

now for the next step... i was supposed to start consolidation treatment yesterday, but I showed up to the hospital with low grade fever. so this thing has put the next round of chemo on hold hopefully until tomorrow... it really is a bummer to be sitting here and just itching to move forward... you know come to think of it? its actually a lot like a flight delay... you are ready to... sitting in the plane... waiting on the runway... just need clearance from air traffic control to go and there is NOTHING you can do about it...

so here i am... waiting to lift off with round 2, but one things for sure, i am not a grumpy passenger :)

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!!!

Wow... What a difference blood makes...

Well yesterday afternoon I received 2 units of blood, and today I feel like a whole new person. I have some energy, feel alert, don't quite feel good enough to run a marathon, but a few laps of the 5th floor are definitely in my future. Things seem to be going very well and doctors are really well. My blood seems to be clotting normally which in turn indicates a very low amount of leukemic cells.

It really seems that this week is the one where I start to get stir crazy. There really is nothing to do but wait for my body to respond. No more counting down procedures. No more anticipating the next chemo treatment. This is really the first morning where I am actually thinking of what life is on the outside of my fifth floor penitentiary. Could that be in future soon?

The roller coaster continues...

In terms of energy, yesterday was awesome... I felt great... today is another story. When the nurse came in at shift change to check up on me, she was stunned that I was still asleep. Normally, I would've been up and about and ready for my day... today... not so much... Simply sitting in my chair and thinking of what to write is pretty exhausting...

Later today, I will be getting my first blood transfusion, which really should help with the fatigue a bunch. So who knows... in a few hours I might be ready to run a few laps of the 5th floor :)

Things are right on track...

Yesterday was a bit tough when it comes to the fatigue... I was definitely pretty out of it for most of the day. Appetite seems to be really good for chemo standards. The one thing is that is really interesting is that it really does dull the tastes buds (which doesnt help the dull hospital food) luckily i have awesome friends that are always willing to smuggle me in some food from the outside world.

The doctor came in yesterday just to chat and talk about how things were progressing... and the news is very good... I am right on track.... My white blood cell count are dropping as we want them too and all other factors that they are looking at right where you would expect them to be for this time in treatment.

I just everyone to know that sometimes it might seem that I am bit down, nothing could be further from the truth. My optimism just might have a little bit of trouble showing through the waves of fatigue that I go through. Thank you so much for all the positive thoughts messages, and emails! I know I haven't responded to all of them. But I promise you that I read all of them, and they all warm my heart :) I will get back to all of them! I promise :)

Over the last few days I have been fantasizing about an Office Space type demolition of this IV stand and pumps that have followed me around for the past week... I will plot my revenge for your tubes tangling, power cord tripping, useless battery, endless beeping, constant whirring... I will have the last word in this, but in the mean time thanks for helping me beat cancer :)

Last day of chemo on deck!

Well this is it for this round... I get my last dose of chemo for a few weeks later today... Honestly though, considering how I have been tolerating it seems a bit anticlimactic. They are gonna come in here at around 3 and hang a bag of sweet and sour sauce looking stuff... It's gonna work its way into my vein and then go on with the rest of my day... The thing is with this stuff is that is the cumulative effect. My blood counts are dropping (Yay!). Most likely they are gonna give me a blood transfusion tomorrow to compensate for my falling red blood cell counts...

Yesterday was really really cool. Victor came by and spent pretty much all day hanging out until his wife picked him up after work and made him go home. I really did have that sorta flashback to times when you were a kid and you got dropped off at your friends house and picked up later in the day... :) although we never get around to stomping in a creek yesterday. Maybe we will get around to it today when he swings by.

In the evening Han and Linda came by to watch the caps dominate the penguins using the sling box Han installed the night before... Elaine and her booooooooooooooooyyyyyyyyyyyyyyyyyyyyffffffffffrrrrrrrriiiiiiiiiiiiieeeeeennnnnnnddddddddddd came by and gave me this awesome model BMW M3 :) Funny how the car world and cancer world are intertwined :)

One Week....

Funny, I just realized today is Thursday. I have been now in the hospital now a whole week. I mean i cant really say that this week has flown by, but it for sure hasn't dragged on, thanks to the constant stream of visitors that come by.

Right now I really do consider myself really really lucky. I don't seem to have any of the legendary side effects that you hear about with chemo -no nausea, no hair loss (actually my hair seems to have a very nice sheen to it with help from all the fluids they are giving me).

The thing what is really stunning is how much fatigue sets in from the chemo. You just feel like you are functioning in slow motion all day... I was watching an episode of Scrubs on Hulu yesterday, and it really did feel like it was taxing my brain.

There seems to be a bit of a pattern to this for me. The full effect of the chemo dose doesn't seem to hit me until 36 hrs after I receive it.

Just thought I would share a funny Ching story again. He happened to be there as I needed to get blood drawn. Since i have central line this is nothing... no needles no stabbing... just pretty much just suck the blood out of my arm like a vampire and we are done. Ching again started squirming in his seat looking pale and counting holes in the ceiling tiles... My nurse Stephanie looks over at him, and asks him if he is ok, and if he needs anything? Ching... get it together.... :)

Plugging along....

Really that is all that there is to do right now... I get my third dose of the chemo later today, which I seem to be super lucky to tolerate fairly well. I might be in for one more dose on Friday, it all depends on what my values look like.

Yesterday was the first day I actually crawled into bed during the day. I have been stubbornly staying away from it during the daytime, in an effort to keep as 'normal' a schedule as possible.

Along with my folks who came by earlier in the afternoon Becky and Jennifer dropped by this evening after work, which really helped to break up the day.

It really is amazing how things really start to slow down for you as the treatment works its magic. I really does take some mental Jujitsu to convince yourself that the worse you are feeling the better you are getting :)

Well thats all I have got on deck for now... but i am never far away from my laptop :)

Ah yes... here comes the first wall...

As soon as I got up yesterday morning, I could tell today was gonna be different. And from what I guessing the next few days are gonna be more of the same. Yesterday morning was the first time i really felt the chemo starting to kick in. I had no energy, sort of felt like i was in that morning fog you have every morning, but this one doesn't seem to want to go away with a cup of starbucks that my mom smuggles in for me. The other thing, is that my appetite is totally gone. Not much seems appetizing anymore.

It kind of seems like yesterday was a transition day. During my first few days post diagnosis, I honestly seemed somewhat high, my brain was pumping out endorphins, like no ones business, prepping me for what is ahead. This really seems like an amazing thing. By doing this, it really seemed to have short-circuited any real feelings of fear and anxiety. I could easily imagine such stunning diagnosis be so daunting and intimidating that without this flood of endorphines you could be easily feel overwhelmed by the road that is ahead of you. It is pretty clear that I am now prepping for a long haul here. Sorry guys, as sports fan i feel an irresistable urge to insert a sports cliche here... This a marathon not a sprint.

Jacques and Elodie were my first visitors of the day. It was really great to see them. Jacques walks into the room and proudly pulls off his hat to show me his newly shaved head. Grinning from ear to ear, I had to inform that the doctors do not expect me to lose my hair (I might lose some, but since I still seem to have plenty that shouldn't be a problem -knock on wood). Jacques I totally love the gesture, and it brings a huge smile to my face just thinking about it :)

My parents came by shortly after, bringing me more news from my family back in Europe calling and and checking up on me. Elaine, Tina, Eric and April came by and brought me and awesome cork board, and some funny pictures. Between the four of them they couldn't find a way to hang it up, we will cross that bridge later :).

Annick came by and brought a ton of books and game of Presidential Scrabble, took me a while to realize this, but what she was really doing is bringing me a game where she could kick my ass in -way to go Annick, way to pad your ego on beating up on a cancer patient :).

Bill, Ching, and Fed showed up later in the evening and we spent a few hours just chatting and laughing.

And somewhere in between that whole day, I received my second dose of chemo. It really is amazing how that really isn't the biggest thing happened to me yesterday.... Thanks guys! I love you all!

So much for my diet book idea...

They just weighed me this morning and managed to put on 4lbs in one day... all of it water weight... now that is impressive.... So I do see see a dose of lasiks in my future (this stuff makes you piss like a racehorse every 10 min about)... So I don't think that I am gonna wander too far away from my bathroom today.

Yesterday evening came the news that I am officially considered Neutropenic, meaning that I have a low white cell count and am susceptible to infection. This is actually exactly what we want. The chemo is supposed to induce this as it takes out the cancer cells... So on one hand it is really cool to see that the treatment is working as it is supposed to, but it is for now an other reality check about how serious this issue is. Now when I leave the room i need to wear a mask. Thats just weird.

Yesterday really was a good day, I had a bunch of visitors. My parents showed up which always brings a huge smile to my face. Nothing like seeing mom and dad when you are sick you know? It really was a well timed day when it comes to visitors... Pretty much as soon as one person left the someone else came. Shalini stopped by and to her credit she really did manage to hold it together (just barely though ;)) seeing me in a hospital gown and tubes coming out of my arm -come to think about it, I can't remember if i was wearing pants then, maybe I was reveling more than I intended and thats what was upsetting her :)

Vanessa swung by a little later all the way from Baltimore and honestly had me riveted with stories of her new kitten. This cat apparently is a total water cat... I have heard of these things before, some cats are just obsessed with water... love to play and swim in it... too funny... Chalk it up to another crazy Vanessa story... seriously I think you should start a blog... you could get rich :)

As I walked back to the room I had the lovely surprise of finding Shonna waiting for me. Kinda sad actually I was supposed to take her brand new baby daughters Scarlett's 2 month pictures this weekend... Unfortunately though something sure did come up didn't it?...

Again I can not thank you people enough for all the positive vibes, thoughts and prayers that are being leveled in my direction... I love you all!

Wooohoo! first dose of chemo is behind me!

I was initially supposed to get the chemo yesterday morning, but the doctors wanted to double check the placement of the central line. Had to wait on a chest xray to be done. Once we got the green light, to proceed 2 nurses arrived with my IV of chemo -finally getting this show on the road. Both nurses go there double check protocol (very impressive btw) my nurse stops, and walks out. After a few minutes she walks back in and explained to me that pharmacy screwed up. Somehow they didn't read the complete orders from the Doctor and use the correct multipliers used to calculate the dose. They had calculated 25 mg when it should have been 24 mg. Doesn't seem like much, but that amounts to 6% more than was ordered, and this isn't exactly Tylenol.

In the mean time while I wait, i got a whole bunch of visitors. Ching came by, saw the tubes coming out of my arm and just about passed out... seriously he turned whiter than me. I was trying to explain to the really cool procedure they did inserting the central line, i can tell that he looking for safe place to hurl. So i stop :).

Jacques, Kevin, Han, and Linda all stopped by shortly after so we had pretty cool party (by chemo-ward standards) Linda bought me this awesome Caps fleece blanket, and Han is gonna look into getting me a slingbox so that I can watch the Caps during my confinement (TV selection is rather limited here).

Everyone but Kevin had left when they finally arrived with my chemo at about 5 or so. They hooked up this baggy of Idarubicin which looks exactly like sweet and sour sauce. I have to say i was really nervous watching this stuff works its way through my IV lines. Almost expecting a cataclysmic reaction once orange stuff reached my arm. But the whole bag went down with no reaction. Awesome I survived.

Today i woke up feeling pretty good, definitely less hungry and feeling a little less energy than i have had in the past few days. So i guess the chemo is starting to do its job. But the one thing it hasn't touched it is my spirit, and certainty that i am gonna get through this.

Chemo day...

Wow... this morning i will get my first dose of three doses of chemo this round of treatment.... in a way i am somewhat anxious to get it, because i kinda want to get this show on the road. Also i think part of still doesnt really know i am sick... the only symptom i have is the easy bruising... other than that, i feel fine. It is really weird to be very sick and not feel it.

Ummm what???

That really was my reaction.... once I heard the doctor say you have leukemia.

Let’s rewind a bit and start at the beginning.

For about 2 weeks I noticed that I was picking up bruises left and right. Everything I leaned on seemed to leave a mark. Finally the last straw was when spent a few hours working on my piece of shit car trying to get it run right. 2 important things happened then cluing me in that something was wrong. First, for part of the work I had to work up under the dash of the car. For about 15 min I was on my side, with my head in the car and my legs outside with my rib cage resting on the rocker of the car. The next morning I woke up, with 3 HUGE and VERY dark bruises on my ribcage. It honestly looked like I had gotten the crap kicked out me. What was really weird there was no real pain... just looked incredibly painful.

The second thing that happened was that while I was wrenching away on my car, I must've cut my finger. Honestly I didn't even notice it had happened, until I looked at my hand and saw my whole hand and palm covered with blood. It was everywhere, on the wrench I was using, dripped on my car, on the driveway. Really disgusting. After washing my hands and doing a damage assessment on my hand, I found the culprit -a tiny 2mm superficial cut on my thumb.

In a way, it is kinda amazing that a car that has the bane of my existence would set in motion a chain of events that would eventually lead to my quick diagnosis.

On Monday, January 11th, on my way into class, I scheduled an appointment an appointment at the University of Maryland. My appointment time was set for 11:30 AM. There was a little of a wait but probably around noon, I went in to see Carolynn. Immediately she noticed that something odd was going on. Actually she kept saying that I was such a fascinating case (it’s most definitely not the most comforting thing to hear a doctor say) She ordered a blood test, ordered me not to leave the building as we waited for the results. Sure enough my platelet count was low. Once she learned that I did have a physician at home and that my mom was a Radiation Oncologist she was confident that I was gonna get the care that I needed to diagnose this future. She did not need to send me to the ER.

Skipping class that afternoon I drove home, calling my physician Dr Howard Goldstein, he made room for me to come in and see him that afternoon. Again here was a physician stunned to see the amount of bruising that have. He drew some blood and looked for signs of swollen lymph nodes, spleen, liver, or any sign of a fever... Nothing... He goes into his office and immediately schedules an appointment with a hematologist for Tuesday afternoon. He sent me home with the explicit instructions that I should treat myself as if I were a boy in a bubble.

The next 24 hours were quite long.... I went to class as I normally would. Of course on my commute to class my cars check engine light pops on (exactly what I needed)...I sat through class but clearly my mind was else were.

230 pm rolls around I head to the doctor (park on the street should be back in time before they start ticketing at 4)... Not going to happen... The doctor was immediately concerned and recommended that we do a bunch of tests to determine what was causing my platelet count drop. He never went into his suspicions about what it could be, but it was clear that he thought it was very serious. So when he gave the choice of going for the bone marrow biopsy that day, I jumped at the chance. I am not a patient person, and waiting 3 days to get only inconclusive test is not a good idea for me. If your gonna make me wait 3 days I better know something conclusive. (The bone marrow procedure was the most uncomfortable thing I have ever gone though... I will spare everyone the gory details, but if you want to just ask and I will gladly share them). I scheduled my follow up appointment Friday, and was settling into a long 3 day wait, when at 1030 AM on Wednesday when my doctor calls and delivers the stunning news... I have Leukemia... words that really suck the air of any room. To be honest... I don't really remember much of the conversation (in my head it really sounded like adults speaking in the Peanuts -waah wahha wahhwah wooannn) only a few words really stuck out... AML, M3, Chemotherapy, and curable (the word curable was somewhat drowned by the moment). I try to get as much information as can fit into thoroughly overwhelmed brain to relay to my mom a recently retired Radiation Oncologist. It was clear that she was gonna take over from now on. I was gonna count on her experience and connections to find the best place for me to get treated. While I was on my home, she was busy calling her former colleagues and we quickly determined that best place for me to get treatment was at George Washington University Hospital where she worked closely with so many people in their oncology departments.

As the day went by... it was becoming more and more clear that my diagnosis was actually a very good one. This subtype of cancer that I have is truly the M3 of leukemia’s. The one you really one you want to have if you have to have a leukemia. The prognosis is very good for a cure, not simply remission. But I am starting this journey the only way that I can -by taking one day at a time.

It is time for me to cut this post off because it becoming clear that I could keep on writing on this topic for ever... my brain is so full of thoughts, feelings and emotions, I could really ramble on forever, but it is really now time to share this with all of you...

This brings me to my last thought.... what has been truly amazing is seeing massive outpouring of support from friends and family... Just the mere thought of what everyone has said, offered or done overwhelms my heart with so much joy and bring tears to my eyes. It really is the most amazing experience to facing such a daunting challenge, and turn around see dozens and dozens of people there walking right behind you as I begin this most unexpected journey. There are no words that do justice to how comforting a feeling that is...

And this blog is dedicated to all of you... Thank you!