My Journey 9/29/10

9/27/10 - A Rebirth...

There is something to say about watching your life move through tubes and syringes.  Monday was my Stem-cell transplant.  The culmination of all the treatments, hospital stays, IV's, doctor visits, name bands, paperwork and stress all came down to a one hour period of time.  There was a huge out pour of emotion and tears were shed.

9/29/10

After two nights of sleeping like hell, woke up to Erika having to head home to work and deal with reality. I didn't want her to leave but she needs to get home.  I knew she was headed up the hill today.  It been nice having her around lately...

Fatigue is starting to set in and looking the side effects are creeping up.  Its interesting to see and feel ones body tweak out from the procedure.  My body is going "what the fuck did you just do to me?"  There are two things that I am going to concentrate on for the next two to three weeks.  nutrition and exercise.  I need to feed those new cells and I need to get them oxygen too.

All the doctors think that im doing great and im going to do everything in my power to expedite my recovery.  Im not neutropenic yet, at that will change by tomorrow (neutropenic means that my body is at its most susceptible to infection).  I got a hall pass to go out side for a short moment so definitely going to be taking advantage of that.   So now its about hanging out and letting my body do its thing.

In august, I met up with a gentleman named Devon O'neal who has been doing freelance writing around summit county.  Nic Drago mentioned to him that we should do an article for ESPN.  Well yesterday the article ran and I've been getting a bunch of good response from it all.  Click here to check it out.  I want to thank Brad Steward, Jeff Curtes, Gary Land, Justin Hostynek, Frank Wells, Todd Richards, my brother Chris, Mom and Dad, and Erika, Rayna and Kalina for helping me get it done.        

 

My journey 9/2610 - day -1

So I am disconnected from my pump buddy which is nice for a change. Get to come and go as I please on the third floor here at St. Lukes. I thought I would try out this I phone app to try a blog update. I'm sitting on the spin bike listening to Gwar. Oh yea! Gor Gor! Hahaha... Things are looking good and ready to move forward tomorrow. From what it sounds like, the transplant itself is only going to take less an hour. Erika's on her way and excited to see her. 

My Journey 9/22/10

   Let me back track a more than a week... Got a call from the infusion center at P/SL about the counts and how many stem-cells we harvested.  The doctors told me that we need a minimum of 2 million to do the transplant.  5 million is recommended and we harvested 9.4 million.  It takes 2-4 days for most people to get the recommended number of cells and I was able to do in in one sitting.  I was hooked up to that machine for 5 hours.  So I think that was great news and i didn't have to go back for another sitting.  Which was great.  I think that was the most surreal part of the process so far.  The noise was weird and watching my blood go through this machine and get processed is crazy.  Glad that I didn't have to do that again!

   Today is day six of chemo to kill off any of the white blood cells that have the lymphoma.  I have one half hour more of this of this and will get a day off on sunday, day before transplant.  Today is day -2.  it counts down that way until transplant day which is day 0.  Days after that are in +1, +2, and so on.  Its kind of like a rebirth in a sense.  I get to add another birthday in a weird way.  We'll call it my immune rebirth.  September 27th.  As the go on, I will be having a couple days of potential feeling the worst through this experience.  Due to my white cells dying and my stem-cells making new ones, I am going to guess that I am going to be feeling fatigue at its most.  Fortunately I got a spin bike to ride here in isolation and trying to get one or so hours on it a day.  The exercise is nice and motivating me to get my ass back in shape.  Which is good since being tied up to the pumps really limits my mobility.  That is going to be one of the keys on getting through this as fast as possible.  

   So day 0 approaches.  Im a bit scared.  Not about the procedure, but at this point I cant help but think of the what if's!  Confidence is high but there is just a lot to think about.  Will the grafting work?  The thoughts go through your head especially since confidence was so high after the first twelve rounds of chemo to kill it off.  Hodgkin's is a persistent bastard.  Is it cause for concern?  No!  I know im in good hands and everything that I have herd is the outcomes of this transplant are amazing.  Odds are very good!

  

  

        

My Journey 9/14/10

This is a trip!  I am hooked up to the machine that separates my stem-cells from my blood.  Its a centrifuge that is able to separate the different parts of my blood.  Frankly I dont really need to know any more about it than that.  

 Today is day -13 until transplant.  I have been having to check into Presbertian/St Lukes every morning since friday to get these shots called Nupegen.  It is similar to the Nulasta shots that I have been taking after each chemo round.  It also is a white blood cell booster, but this is short acting.  Where as the Nulasta works over a week or two period.  The shots ups all my blood cell levels to get ready for this beast.

   At the risk of sounding like a broken record, i've been trying to write down the things that I have felt like been milestones or significant mental challenges.  Today is one of them.  Watching my blood come out and cycled through this machine is doing two things.  One, realizing just how cool modern medicine is and two, just how fragile life can be.  Seeing my blood spin through this thing is surreal.  We are fortunate to be living in a time that we can treat these conditions.  This treatment wasn't here a generation ago.  Thats a scary thought in its self.  But reassuring also!  

   Needless to say im feeling a little drained right now.  Ill up date soon. 

My Journey 9/9/10

   So there's been quite a bit going on since my last update.  I had a tooth pulled on Aug. 25th.  Reason being I had a root canal done when I was 10 years old.  The tooth had a potential crack in it up by my jaw bone.  It was an upper tooth just left of my front two teeth.  For what ever reason, there was a little infection that had a small drain in my upper lip.  The infection had been going on for the last 20 or so years.  It never gave me any problem.  And we never say any decay in the tooth and jaw bone from the infection.  But since the transplant will bring my immune system more or less to zero, I cant afford to have a flair up cause of a bastard tooth.  So I had them do a bone graft also so I can have an implant latter down the road.  So im definitely a redneck now! hahahahah

   The following friday was my restaging testing.  I had another PET scan, a Echocardiogram (heart), Pulmonary (lung) test, Blood and Urine test and Bone Marrow Biopsy and A Bone sample.  The PET scan came back looking like really good. I am in remission which is where I need to be to move forward with the transplant.  Same with the Echo and Pulmonary tests.  Blood and Urine looked really good too.  Same with my Bone Marrow.  The funny part was the first needle that they used to take a Bone sample bent cause my bones are strong.  Must of been all the milk I drank growing up.  They got the core sample with a bigger needle.  It too cane back looking really good.  With my face swollen and walking with a little limp, it felt like I had been in a bar fight.  hahahahaah

   With all the news looking really good, all the doctors including my transplant doctor want to move forward without mobilization chemo.  Hell yea!  That means that I only have one more chemo to do and its the big one.  Immune Suppression chemo.  Tomorrow I start taking shots to stimulate my stem-cell growth.  Monday the 13th, I have my CVC catheter placed. and start harvesting later that afternoon.  Harvesting could take up to 3 days.  Well just hope for one.  Ill have a couple days off then on the 20th, ill check into Presbyterian/St Lukes (P/SL) for what will be about 2-3 weeks.  September 27th is D-day for the transplant.

   Im expecting to be hit pretty hard from the chemo.  And im feeling that the waiting around is worse than the actual procedures.  The anxiety and reality from the consent signing on tuesday has made the reality kick in pretty hard.  I've been so fortunate that I have gotten through all the treatment up to this point so well that it has felt surreal.  Dream like!  Signing all the papers has made me realize just how important it is to fight and push forward.  I know im going to be all right through all of this, but when discussion of your mortality is discussed, it hit pretty hard.  Im good and ready to tackle this bitch! Here we go!