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...