Thursday, June 26, 2008

Whats going on with me.

Well…I’m not exactly how to start this blog but if you are reading this then you have probably already heard that I have some medical condition going on. I thought a blog would be good because I can explain exactly what is going on with me so there will be less confusion. I envision the “telephone game” where the original story morphs into some strange aberration of the original story. So in order to prevent any convoluted story I figured I would write it down. The other reason I think this will be good for me is that when I do talk on the phone I will not feel like I have told the same story a hundred times and give you guys a super watered down version of what is going on.

So if you haven’t heard I have been diagnosed with Acute Lymphoblastic Lymphoma. It is a non-hodgkins lymphoma. It has affected my lymph nodes in my chest, but has not spread to any other lymph nodes in my body. The CAT scan shows that the mass in my chest is approximately 10cm x 12cm x 14 cm (3.9in x 4.7in 5.5in). That roughly translates into the size of a softball. They have done a bone marrow biopsy which has shown that it has not spread into my bones. They are going to do a spinal tap on Monday June 30th and see if it has spread into my nervous system. As far as treatment I am going to be getting a type of chemotherapy called Hyper-CVAD.

http://en.wikipedia.org/wiki/HyperCVAD

This article says that the treatment is given in eight stages but I will be getting only six different stages. They are given in two separate courses A and B and then repeated three times. The length of treatment depends on how I respond, but for now it looks like it will be about a year. After the chemotherapy it looks like I will be getting radiation therapy focused on the mass in my chest. After all the therapy is done they are looking at giving me a stem cell transplant. The focus of the chemo is to break apart the mass as well as break down the bone marrow so that it can be replaced with new bone marrow that does not produce these cancer cells. They used to do bone marrow transplants in order to replace the bad bone marrow. As you might have heard this is a long and painful transplant. However, now with the advances in medical technology they are able to do stem cell transplants. When they do a stem cell transplant they find a donor that matches your DNA. The doctors then give the donor a drug that increases the donor’s bone marrows production of stem cells. The stem cells are then harvested from the donor and then injected into the recipient (aka me). The stem cells then swim around me until they find something to do. In this case the stem cells see that I have no bone marrow and they swim their way into my bones and the stem cells become new bone marrow cells. The problem is finding a donor that is a DNA match. The first step in finding a donor is checking to see if one of your siblings is a match and then if they aren’t the doctors go to the donor bank and see if there are any matches there. If you think back to sixth grade biology class you might remember Gregor Mendel and the Punnett square you will remember that there is only a 1 in 4 chance that your sibling will be a DNA match. In my case my sister and my brother were both tested and my sister ended up being a match.

Here is a link if you want to read what the internet has to say about my type of lymphoma.

http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin/TypesofNHL/Lymphoblastic

The doctors have told me some encouraging words about my prognosis. The first risk factor that I have to my advantage is my age. Since I am 32, I am still considered young which will be advantageous to my recovery. The next thing is that when they discovered the lymphoma I was (and still am) healthy. This is a rapidly developing form of lymphoma and many people do not get diagnosed until they are forced to the hospital due to complications. I was diagnosed when all of my vitals and my blood levels were normal, so I am at a great starting point for combating this disease. The next factor in my favor may not at first present itself as an advantage. As I just mentioned, and alluded to by the name Acute Lymphoblastic Lymphoma, this form of Lymphoma grows quickly. When the doctor told me this it didn’t seem like that was good news, but he quickly explained it to me so I will try my best to do the same. The reason that this is a good thing is because of how the treatment works. Chemotherapy is most effective against cancers that divide rapidly and have a good blood supply. Therefore my chemotherapy treatment should be extremely effective in curing this cancer. I have heard and read a bunch of numbers about the success of chemotherapy in the treatment of my type of lymphoma and the numbers are extremely encouraging. The stats say that the number of people cured by chemotherapy range from the low to high 90 percentile. What is also encouraging about these statistics is that they take into account all the people who have this type of lymphoma; elderly and those who are already immunocompromised (sick). So, theoretically my percentages may be slightly higher.

I am currently in Phoenix, AZ at the Mayo Clinic Hospital. It is considered one of the best hospitals in the country for the treatment of Lymphoma. The doctors do not know exactly how long the mass has been growing in my chest. They do know that it is a fast growing type so they told me that they do not think that it has been there for an extended period of time. After much consideration and referencing the book of Doctor Double Speak I think that means that it has been there for over six months. However, this number can not be substantiated. One of the side effects of the chemotherapy is that it will impair my immune system. Because of that I have a room to myself, which I cannot complain about. There is a treadmill in my room and I can have visitors 24/7. Right now the only visitors I have energy to see are my family and my girlfriend.

If you guys are feeling silly and want to mail me something my parent's address in Phoenix is
1846 West Sunnyslope Ln
Phoenix, AZ 85021

Since all of the patients on my floor have weakened immune systems I am not allowed to receive any fresh flowers because they could get some of the other patients sick. I have been asked by many people if I need anything. Right now everything I need has been taken care of. My family has been able to get me everything I need here and the 731st Airlift Squadron has been there for me every step of the way. I know it goes without saying but if there is anything that I would ask of you guys is that you keep me in your prayers. I am also asking for your guys patience when it comes to me returning your phone calls. I love that I have gotten so many calls and I can’t thank you for that enough. I do not want you think that I am using one of my standard screening processes to avoid your calls. I am in an extremely busy phase of recovery and that makes it difficult to talk. I promise that I will get back to you guys as soon as I can. If you do want to try to get a hold of me you can try my cell number at 830-734-7009. It sounds stupid but when I do get a chance to check my cell phone and I see that I have missed calls, text messages, and voice mails, from you all it brings a smile to my face to know that you are thinking of me. Also if you guys know anybody who doesn’t know my blog address feel free to let them know that it is http://nathantday.blogspot.com/ I know it is kind of silly telling you guys this information since you are already at the website address reading the blog. That is the quick and dirty of the story.

If you are extremely bored and want to read some of the background of how I got to where I am now, then feel to press your luck and read ahead.

History: I had had my annual Air Force physical in May and they did not find anything out of the ordinary. On 8 June my squadron set off for Al Udeid Air Base in Qatar. Qatar is a small country next to Saudi Arabia. Here is a link about the base.

http://www.globalsecurity.org/military/facility/udeid.htm

I was scheduled to be deployed there for thirty days. I was excited about the deployment because, not only was it only going to be a short deployment, but I was going to be in Qatar, which is a modern Muslim and has little threat of terror attacks.








Noelle and me the day I left for Qatar








The facilities are excellent on the base. We stay in trailers with individual rooms, there is a dining facility that is open 24/7, multiple gyms, an indoor and an outdoor gym, and we even have shopping facilities to get any amenities that you might need. Like I mentioned earlier we departed for Qatar on 8 June. We flew out there on our own C-130s from Colorado Springs. The C-130 does not have not have enough range to get us all the way there so we made planned fuel stops in St Johns, Canada; Mildenall, England; and Souda Bay, Greece. It was a great way to start a deployment. The problem was that we had to get there in a C-130. It is an extremely versitle airplane, however it wasn't built for speed or comfort.























The spacious accomidations of the C-130. As you can see there isn't a lot of room to lay around. That led me and my friend Eric Swartz to climb on top of the large conex we were transporting and sleep on top of it.












Glacier watching in St Johns, Canada



















Flying over the Swiss Alps












Suda Bay Greece














What time we wasted getting there we quickly made up for because we hit the ground and started working immediately. My assignment for the deployment was to work in the Tactics Office. My job there was to plan the missions that all the C-130s there were to fly. My schedule was from 5 pm until 5 am. I was working that shift for about five days when I developed a chest cough. I also developed night sweats. If I took any kind of deep breath I would start coughing. After one of my twelve hour shifts I decided to go to the clinic there to have them check me out.

The doctor gave me a brief inspection, however, when I described my cough with the associated chest pain they sent me to the main hospital. I actually thought this was hysterical because they picked me up in an ambulance, then they had me climb up into it myself, and then proceeded to strap me into a stretcher and put me on oxygen. What made it comical was that after making me lie down in the ambulance they had me get off the ambulance myself and then I walked into the hospital on my own.


I thought it was so funny that I had Eric take a picture of me getting on the ambulance.




The doctor there gave me a preliminary exam and told me that I probably had asthma. He was about to give me an inhaler and send me on my way but because of the chest pain he decided to give me a chest x-ray. Once the doctor examined the chest x-ray he came back to my waiting room and started taking the exam seriously. He re-asked all of the same questions he had asked earlier, and gave me an exam of all of my lymph nodes. That is when he told me that I had a mass growing in my chest. He wasn’t sure what the mass was but he told me that there was no reason for me to be getting exams there in Qatar. I was immediately sent to be outprocessed and sent back home. The trip back to the US seemed like it took forever however in actuality I was quite proud of the AF for getting me back so quickly. After the initial discovery, it only took about 5 hours to get me outprocessed, packed, and on the first C-130 out of Qatar. What was rewarding for me was that I had worked the night shift so I had actually planned the flight that was now about to take me back to the states. As a side note I am proud of what the C-130 does. It moves cargo, soldiers, we drop men and equipment with parachutes into remote locations, and obviously in this case we are more than suited for our life saving mission of aeromedical evacuation. I was now on one of these life saving missions. No longer was I in the cockpit wondering how the wounded in the back were doing, now the roles had reversed, and it was me that was using the services of the mighty C-130 Hercules to bring me quickly to medical care.

The trip out of Qatar took a while because we had to stop at four other airfields and pick up other wounded soldiers. After about a four hour flight we arrived at an airbase called Balad in Iraq. The base is about a hundred miles north of Bagdad, and is a large Army base, home to about 50 thousand soldiers. From there I was put on an Air Force C-17 airplane and took the five hour flight into Ramstein Airbase, Germany. They put me on a litter. Which is basically a stretcher that they suspend from supports in the middle of the airplane. I’m not sure if it was comfortable or not but it must have been because I slept the entire time over there. Once I arrived in Ramstein, they put me on a 30 minute bus ride over to another Army facility there called Landstuhl Airbase. This is where they did preliminary tests to see the extent of my condition. If you need immediate care they can do it there or if the condition does not require immediate attention they can send you back to the US for further diagnosis and treatment. Most of the medical facilities in theater are Army because the Army is the branch that is receiving most of the injuries and therefore is best equipped to provide medical care. I was admitted to the ICU and they quickly gave me another chest x-ray and CAT scan. When they admitted me they were a little surprised to see that I was the patient going to ICU. The ICU patients they normally receive are in stretchers and usually are not walking on their own. Once they got back the initial results of the x-ray they decided to send me to the US for treatment and I was moved out of the ICU into a regular ward of the hospital. I actually missed being in the ICU because as you all know already I am a little high maintenance. ICU was great for me because I had two nurses that would get me anything I wanted, plus I had a room to myself. Once I was moved from ICU I had to share my room with two other people and there was no personal flat screen TV. I had to walk like four rooms down the hall in order to watch movies and play xbox on a 55” flat screen TV. Man was it rough.

The only test results that they gave me while at Landstuhl were the chest x-ray results which only showed a mediastinal mass (that is fancy doctor speak for a lump of something in my chest). At this point the doctors didn’t have enough information to make a diagnosis. This was probably the most emotionally tasking part of the situation so far. Not because I was scared about the test results but I was concerned as to what to tell my parents. You see I was waiting to tell them what was going on until I got some kind of diagnosis. I did not want to scare them too much but I did want to tell them as soon as possible that I was going to be coming back from Qatar to receive treatment for a mass in my chest. Well since I did not get any further information from the doctors in Germany I was forced to keep this little secret from the ‘rents. My flight back to the states was scheduled for the next day. We departed Germany in another C-17 and made the seven hour flight to Andrews Air Force Base, MD near DC.

I was only at Andrews AFB for one night and in the morning I was off again on a C-130 on my way to Wilford Hall Medical Center in San Antonio, TX. This flight was only a 5 hour flight but it felt like it took forever. I think it had to do with the fact that I was getting excited about finding out exactly what was wrong with me and more importantly getting the treatment started. The trip onto and off of the C-130 was as comical as the initial ambulance ride I had in Qatar. The medics would let me walk up to the airplane and then they would load me onto a liter, they would carry me onto the plane and then strap me into place on the liter. Once I was loaded on the plane they would let me walk around and use the bathroom on my own, but when it was time to deplane they restrapped me on the litter and then carried me off. The last ambulance ride I took from the C-130 to the hospital was the coup de grace for the entire trip. They moved me off the plane and put me on a stretcher on the ambulance. When we got to the hospital I asked the nurses if I could get off the ambulance myself. They told me that they are required to take me off in the stretcher. Well, when they pushed me off of the ambulance they didn’t let the legs of the stretcher lock and I ended up falling about 4 feet to the ground. They didn’t injure me but it was definitely a surprise, and as it turns out much less safe then just getting out of the vehicle yourself.
It felt good finally being somewhere where they could make a determination as to what was wrong with me. Once I was finally checked in they immeadiatly had another chest X-ray and a CAT Scan. The X-ray was the third one I had had in at least four days and every time I had an X-ray the technician would think there was something wrong with the equipment. They would see this unexplained spot on the film and make me take a couple more shots. I just got used to telling the X-ray technicians that they didn’t need to take another X-ray and that the spot was supposed to be there (well, it actually wasn’t supposed to be there but it was supposed to be on the X-ray.) It took the doctors two days to make a final diagnosis. I called my parents immediately and told them what the prognosis was and what the treatment was going to be. They grabbed what clothes they could, clean or dirty didn’t matter, and any thing else they could need for the two day drive out here. Not thirty minutes after I told my parents the news a social worker told me that the Air Force would pay to fly out my parents to San Antonio. I quickly called up my parents and told them about the flight arrangements. I caught them just in time because they were in the car on their way to see me.

That afternoon the doctor came in and told me that they were going to start treatment as the next day. This was great news because I was excited about getting better as soon as possible. They also told me that treatment would be about two years and that all of the treatment would take place in San Antonio. This bit of information was not as well received as the first piece of information because that means that my parents would have to be away from their home in Phoenix for quite some time, and when they weren’t there I would have to be alone in San Antonio. The doctor added one caveat to my treatment. They said that if I could coordinate with a hospital in Phoenix that my insurance, TriCare would pay for treatment at a civilian hospital. Well with the help of my social worker the flight surgeon at Peterson AFB, and my Oncology doctor at Wilford Hall they were able to find a doctor at the Mayo Clinic that promised to admit me and immediately start treatment without doing any extraneous testing and blood work.

I had mentioned that if I received treatment in San Antonio that I would be alone. That is not true because I had the generous and amazing help of my roommate’s parents, Deanne and Mike Trodden. As soon as I was admitted to the hospital they were there to visit me and bring me anything that I needed. More importantly that that they were there for emotional support when I was finding out all this information out about my health.
Once my doctor and my social worker at Wilford Hall Medical Center were able to coordinate with the Mayo Clinic and find a doctor that would treat me, the Air Force was able to get me on a flight in less than four hours. I think that was the fastest that I have ever seen the Air Force accomplish anything. Because I was still in good physical condition they let me fly by myself to Phoenix. Once I arrived in Phoenix I was admitted to the Mayo Clinic for treatment. They immediately admitted me and began treatment the next day.

17 comments:

JerrryandClaire said...

Hi Nate. Thanks for the update and the blog. It will help us understand what you are going through and be more specific in our prayers. We love you very much!

Love Uncle Jerry and Aunt Claire

zoloft mom said...

Hey dude,

We're praying! Thanks for the update! Keep them coming when you can.

Love you so much!

Lisa

'rents' said...

Hi Nathan! Thanks for starting the blog - such a good way to keep us all up to date! So glad to hear the promising news and will keep praying!

Aunt Mia and Uncle Rich

PS Did I hear you were on the treadmill after your last treatment?
Holy cow - that's kind of out of my arena of reality....

Unknown said...

Hey Nathan,
We're praying for you, too. Glad to have the blog to keep up to date with your situation. Hang in there.
Ross, Julie and Sam.

Anonymous said...

Hey Nathan! We think of you often and are praying for you! We love you!!! The blog is a great idea - keep us informed when you can.

We love and miss you!
Amy, Jim and Katie

True Story said...

Hey Nate,
Just wanted to let you know we have been and will continue praying for you man. Keep it real and blow it up when you can.
Much Love,
Ryan and Sandy

Anonymous said...

Hey Nate! Did Nova Scotia give you permissions to post her pic on your blog?? For your sake, I hope she did! You know, I live about 3-4 hrs from Landstuhl Germany. Cant believe you were so close! Thinking about you - Jessica

Anonymous said...

Hey Nate. Haven't talked in a while. Needless to say I was thrown back when I read your blog. I wish you all the best, and know that you are in the thoughts and prayers of my family.

-Matt Ray

Unknown said...

Nate,

Thanks for the update and the complete story. Please keep updating when you can. We are praying for you and waiting for you over here.

MJ

Anonymous said...

Tater,

what a crazy trip, you silly fool! all i heard was 'blah blah blah' 5 days at the deid 'blah blah blah'...i've heard of people doing all kinds of crazy stuff to get their tax free and get home, but seriously! nice digs in st' johns and souda? man am i jealous!

Miss ya bro, we'll be in abq in a month or so and try and make the trip out, shade tree said he'd ride out with me. call me when you think you up for visitors

Anonymous said...

Hello Nathanial,

I know, your name is Nathan-NIEL!
Not Nathan-NIEL...just Nathan.
NIEL! NEIL!

MURRAY!!!

leesa said...

Paul might be coming to PHX Fri, (the 25th), maybe we can see you then if you are up to it? Been texting you, but I allots going on right now! It was nice the last time I saw you! Hope to see you soon! Leesa~ SWA F/A

Anonymous said...

Neil trap! Murry!

"Nails, Diesel, Deez..." said...

Great to see you this weekend brother. Also great to see your family that I've heard so much about, and never met before. You hang in there and punch through this thing. We're all here for you.

Vinny

Anonymous said...

Tater,

We know you WILL make it through the tough times with the love and support of your family and friends. We are also very confident you will be fine because you are armed with a wicked sense of humor and an outlook on life that would enable anyone to overcome anything. (This is pretty obvious to anyone who knows you, so technically, I guess that means this whole comment is one big "Murray"...damn.) You are the man! We miss you and think about you often.
Love Ian, Karen and Matt

AL Gregor said...

Hi Nate,

Glad to see you're looking so good.

Hang in there. We're all praying for you!

See you soon,

AL Gregor

Anonymous said...

Nate,
I've never posted on a blog before (not even Michancy's) so you should feel special. You're in my thoughts and prayers. I know it goes without saying but I'll say it anyway, let us know if you need anything!

-John (and Michancy)