Marshall's music, t-cells, t-shirts and more

Sunday, May 27, 2012

How I Nearly Became Spiderman

It was difficult to sleep on Monday night. The impending hospital stay began weighing on my mind as I packed my bags and decided which books I'd like to accompany me on this stretch of the journey.  Sleep deprived and anxious, I drove to the hospital on Tuesday morning.

East 8 welcomed me with warm smiles and open blood pressure cuffs. I was scheduled for my first round of TBI (Total Body Irradiation) at 9:30 am. I spent some time unpacking my bags and organizing my room. Its a pretty spacious room with a great view of the eastern foothills. The morning sun welcomes me with a bright cheery atmosphere. I much prefer its natural radiance to the synthetic glow of hospital lighting. 

When the tech from radiation came for me it was time to put my nifty mask and breast plates to the test. It's quite a treck down to the north end of the first floor so they bring a wheel chair for me. I haven't used it much so far (just Friday when I had an extreme spell of nausea). I figure as long as I have the strength to walk around I could use the exercise. 

In the radiation room I step onto an elevated platform while they secure my bracings, and hang thick medal plates specifically shaped to cover my lungs during the treatment. As they got me all situated and strapped into place they took a couple preliminary x-rays to confirm with the doctor that everything was set up correctly. 

It was about this time that I noticed a big furry spider come crawling out of the air vent not more than about 2 feet in front of my face (for the first round of radiation I am facing backward - you can see the vent in the ceiling just behind me). To make matters worse I was told to remove my shirt for the procedure and felt quite exposed to my spotted litte friend. When the tech came in and let me know that we were about to start I told her, "That's fine but I'm not holding still if this spider crawls on my face."  She came back with a hospital chart or something and swatted him against the wall. The hairy creature wasn't quite finished though and made an acrobatic decent, plummeting downword on a thin silky cable. She swatted again and that was the end of the him. 

At first I was relieved, and verbally justified the murder of the likely harmless arachnid by saying something like, "If you think about it, we did him a favor and put him out of his misery. He was about to get nuked by radiation." We had a good chuckle about that. But then I realized my blunder. What if we hadn't killed the spider? It's likely he would have acquired mutant abilities from the radiation - thereupon biting me and transferring his mutant powers. I could have been the next Spiderman! A once in a lifetime opportunity lost to the irrational fear of a helpless invertebrate.

The first day of radiation was pretty long because of the many x-rays that were taken. However, after the initial visit, we settled into a pretty good routine: 10 minutes of TBI to my back, take a break from standing and lay down to administer the CNS (Central Nervous System) radiation, and then 10 more minutes of TBI to my front side. 

CNS irradiation is administered with lazer precision to my brain. They told me that I may see blue lights and smell something similar to bleach. This is not due to any of the functions of the machinery, but rather how one's brain reacts to pulses of radiation. I have both seen the blue lights and smelled the strage metallic smell - neither of which actually exist - yep I was trippin. 

The good news is that today is day 6 of my radiation treatments. I'm done! And for all I had to go  through I got to ring the bell of celebration! 

More adventures to come, but for now I am going to "Celebrate Good Times Come On..."

Sunday, May 20, 2012

Is THIS week really here?

This week is the week. The week Marshall starts full body irradiation therapy daily before his transplant. The week that starts the chain of events leading to a new immune system, a second birthday for him, and the potential for acute or chronic graft vs. host disease. Also in it holds the potential for living instead of dying.

I feel like no one should have to face the number of life verse death decisions we have had to so far and no one should have to face the serious number of "turn-of-event" situations that we have accrued. But underneath it all I also know that we can handle so much more than we ever could have without this experience. That the Lord has guided us through and taught us (especially me) every step of the way.

No matter what the outcome, we are stronger, we are better equipped to handle the "hard stuff" of life. So I am thankful for all the tears that have been shed and will be shed, the prayers that have been given and will be given, for the service rendered for our family and those who have served our family and will continuously serve, and those who have given and will give to the cause.

I admit I didn't want the transplant all along. It's the harsher of the choice we had. I am putting full trust in the Lord. I know people who have been praying for our medical staff and a very strong blessing that Marshall received before this all began that the medical professionals would be inspired. We heard many times that they had a 'hunch' or a 'I don't know why because you are following the protocol and I shouldn't pull you off, but I feel like you should do a transplant'. I am putting my complete faith in Him and He knows what to do. What an opportunity for growth and living outside our comfort zone that we have been given. Happy last Sunday home for awhile to Marshall! I will miss him while I go to church with Kezman without him!
My sweet baby boy started walking the night before my birthday. Coolest birthday present ever, but it also makes church hard because he doesn't want to sit in my lap- he's too independent.
We have had tried to have a lot of fun this past month knowing that the time would come that the majority of our time together will be stuck in a small hospital room and wing (Marshall's not even allowed to leave the east wing for the west wing on the 8th floor) while trying to keep his distance from people as well. We will soon be hermits so humor me while I hit the replay button on a few other memorable moments this past month.

We celebrated my 27th birthday by going to a sweet Jazz game that got them into the play-offs (great for how young they are).  Marshall and I are pretty good for such a young team too :). (Except we better WIN at playoffs!) He actually was growing back a good amount of hair by then, but he wanted to shave it into a "J". When he said he was going to shave it off before church the next day I innocently asked why. I thought he was doing it to stand for Jensen. I didn't even make the connection to Jazz until Corey outlined it in Jazz colors. Then our great friend Cyndi stopped by and said, "Just keep it on-- tomorrow it can stand for Jesus!" Love her- she brings a lot of laughter to life. We went to the game with Tori and a guy and our friends who in their true Corey-and-Brett fashion snuck in celery and a whole jar of peanut butter. BAHA! Celery dipped in pb never tasted soooo goooood! I lost my voice from screaming- gr8 game!

My youngest brother Karl is going on a mission to Kobe, Japan! My family stopped by when they dropped him off at the MTC. I sooo wish they lived closer on the hard days. So, one of my dreams came true to watch all three little brothers serve. When I went on a mission years ago I hoped they would follow in my footsteps.  I know it is not because of me they chose to go- they each have had their own conversion experiences, but I'm so glad they all made it!!

The last few days it has been great to see a good friend from my freshman year of college, Goelz and his beautiful family and my wonderful room mates from the Riviera days.
Goelz' son is such a good big brother!

And smores with the nieces and nephews! They watched the show Sandlot so we ate them in the order Marshall said. First you take the grahm. You put the chocolate on the grahm. Then you roast the mallow. When the mallow's good and flamin', (insert blow here), you put the mallow on the grahm. Then you scarf. Marshall loves "mallow"s! He was so chunky when he was little that they called him Marshmallow; except Abby kept calling them "mellows" :)

 Kez's first smore

Bundles of joy! Thanks for lending them to us for a while Jordan!!

Friday, May 4, 2012

It's Another boy!!!

Well not really... it's just my heart. We had an appointment with a cardiologist this morning and she took an ultra sound to measure its volume and pumping capacity. Did you know that your heart beats approximately 100,000 times in one day? That's 35 million times a year! 

The ultra sound machine also displays red or blue to indicate which direction your blood is flowing. This helps determine whether or not the heart's valves are functioning properly - I'm happy to report that mine are. However, the technician did tell me I was "lungy" because my lungs kept getting in the way, so I started holding my breath. It definitely helped keep my lungs off the screen but I kept wondering if the lack of oxygen would hinder my heart's performance. 

After our fun little escapade on the 7th floor we popped down to the 6th for a respiratory exam. It turns out that I'm great at "inspiring". It's not what you think though, that just means that I can take in a lot of air. I'm also pretty good at "expiring" - but don't worry, that just means "to breath out".

For this exam I got to sit in what can only be described as a glorified phone booth. It doesn't look like much but this transparent confessional goes for $40,000 bucks! I don't know about you, but unless it can travel through time and take me on an excellent adventure, I think I'll go with the Corvette.

After some puff puff give with my new friend Ron we headed up to East 8 for a blood draw. My nuetrophils are coming back - Yes! I'm at 1.0 now (normal and healthy is about 1.8) - so we're getting there. They also wanted to get another mucus sample to see if I still have the flu. In the past they've inserted a suction tube up my nose to get a sample. But today I had to try not to laugh when this guy came in with a sample cup and asked, "You ever do a Farmer Joe Blow?" I almost rebutted, "I believe the politically correct term is Snot Rocket." Instead I kind of chuckled, plugged one nostril and gave it my best shot. I handed him the cup and asked, "Will that work?" Excitedly he responded, "Oh ya, that's perfect!" Wow, I haven't seen anybody that enthusiastic about mucus since Egon scraped some samples from the NY public library (Ghost Busters). 

It was quite a marathon day and we decided to top things off with a spinal tap - yay! It went pretty well (no tickle fits) but my back is a little more sore than usual. After 7 hours at the hospital AJ and I couldn't wait to get home and see our boy - thank you to Kelly and the Weilers for watching him today. He is really starting to get confident on his feet (not to mention chubby in the cheeks). Check him out in his new Thomas the Train Engine PJ's :)

Wednesday, May 2, 2012

Tattoos and a Facial

Good news, they let me go home from the hospital Sunday night. It was a pretty uneventful stay to be honest. But Monday, that's a different story. On Monday I had an appointment with the radiation team; a preparatory consultation for my upcoming treatment. I am scheduled to undergo six days of TBI - Total Body Irradiation - but before we get to the details on that, lets address this whole radiation vs. irradiation situation. In physics the word "radiation" is used to describe energized particles that are traveling through a medium. "Irradiation" is the process in which an object (in this case me) is exposed to "radiation". From what I've read the side effects of this treatment are extremely irritating, so irradiation is quite a fitting title. Alright, enough of that nonsense! What does all this have to do with me getting a tattoo? Well four tattoos actually...

The TBI takes place in a fairly large room. The radiation machine looks like a giant telephone with an eyeball on one end of the receiver (this is what shoots out the energized particles). During my treatments I will stand in a strange apparatus that kind of looks like one of those home gym infomercial rigs...

"The bones of steel home gym comes fully equip with a bike seat, parallel bars, armpit rests, and hand grips. Be one of the first 100 callers and we'll throw in a custom fit face mask free of charge! So what are you waiting for? Pick up the phone and order your bones of steel today!"

The purpose of this peculiar contraption is to help me stand completely still while they zap me. Apparently the lungs are particularly sensitive to this kind of treatment. As such we fitted a set of lead plates that will hang in front of my lungs to minimize the radiation they are exposed to. To ensure that my lung shield is in just the right place they tattooed a couple marks on my chest and back to ensure it is aligned properly each time. During my treatment I will spend about 10 minutes facing forward and then 10 minutes facing backward. Luckily, I am allowed to bring an ipod and some headphones.


After I got my tattoos it was time to design my face mask. I will wear this mask when I have radiation done to my brain - yep right to my head. When chemotherapy was first being tested they made great strides with leukemia patients. Using multi-drug regiments they were able to send the cancer into remission for nearly a year. Sadly however, patients who were seemingly cured returned with cancer in their brain and spine, and ultimately died. This is why lumbar punctures (chemo injected into my spinal fluid) and radiation to my brain are necessary and crucial for my treatment. In order to help me hold still during radiation to my head, I was fitted with a custom face mask. This was done by stretching a hot, wet piece of netted plastic across my face and then letting it dry and cool. Markers are attached to the mask that will be lined up with lasers to ensure that the radiation is administered with exact precision. 

I am scheduled to be admitted to the hospital on May 22nd (this is when I begin radiation) and my transplant is to take place on June 1st. If all goes well I should be out of the hospital in 6 to 8 weeks. I am told that it can take up to two years for my immune system to rebuild and recover. This is partially due to immuno-suppressant medications that ensure I do not reject the transplant. I'll post some more details about the transplant at a later date. For now, I am resting up at home and trying to kick this flu - gotta be healthy for the big day!