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 :)