Remission...Again

I'm sure by now the news has spread throughout my collective peers that I received great news a few weeks back.  My last bone marrow biopsy showed no signs of Leukemia.  This was wonderful news and we were very happy to hear it from the University of Chicago.

Tomorrow is the one year anniversary of my bone marrow transplant.  To me, it's not important because a year has passed, but more that my doctors can now release the contact information on my stem cell donor.  I will be contacting this person to thank them for saving my life, for sure. 

Life is stupid busy right now...but good to say the least.

Goddamn Cancer

Yes, I said it.  Goddamn cancer.  This last year has just felt like one bad episode of House.  If I lose one more person to this dreadful disease, I just might snap.  

Friends of our family have been struggling with this disease as well.  Our friends Alan and Angie live in Niles and we see them often.  Angie has a sister whose husband Johnny was diagnosed with colon cancer last year, shortly after my diagnosis of Leukemia.  He since gone through a fierce chemo regimen and surgery.  It's also metastasized in his liver.  This is from his Pam, his wife's blog today:

http://thefightingtoad.blogspot.com/

News from the CT is bad.  Liver is worsening, despite both regimens of chemo.  Cancer has traveled outside the liver to the mediastinal lymph nodes (lower chest) and in the upper abdomen.

Dr. Ansari is giving Johnny his regular chemo regimen today, and adding Avastin.  He will evaluate our options and give us an updated plan in two weeks.  We may be looking at experimental options next.  Radiation isn't an option.  Additional surgery isn't an option.

My heart goes out to Johnny and his family.  I wanted to post this here to raise some awareness about him.  So, if there's a God you pray to or a savior you turn to in times of turmoil, now would be the time to keep Johnny and his family there in hopes of a good recovery.  There's always hope.   

Johnny, Pam, Alan and Angie - 

If you need anything, please don't hesitate to call.  You know we'd be there.  

~Jonathon    

Drawing, Weight and Good Living

It's been a while since I've posted, so I thought I'd give out an update.  Overall, I'm feeling pretty damn good.  Lately, I've been doing a lot of work outside AND drawing!  The neuropathy in my hands has mostly diminished, so a friend of mine and I are working on a project together.  Last year really took its toll on my hands and I had a hard time writing well.  Drawing was simply out of the question.  But now, I'm getting back what was once lost.  For updates on that, go to www.jonathonrose.com.

I'm still on Prednisone (steroid) and probably will be for nearly a year.  It does wonders for my appetite.  I've also began to regain my weight.  My target weight is about 195 or maybe 200lbs.  I'm up to about 185 right now.  It's hard to believe at one point last year I was down in the 140 area.  Crazy.  

For right now, all is going well on the Rose front.

I apologize for the lack of creativity and updates in my writing lately.  It's just been hard to find the time with it being so nice out now!      

Mild Case of GVHD

My doctor in Chicago (Dr. Artz) has decided I now have a mild case of GVHD.  (Graft vs. Host Disease.)  It's a condition where my new stem cells are attacking what's left of my old immune system.  As a result, you get fevers, extreme dry mouth, tightness in my skin and a whole slew of other things.  It's very possible that I've had GVHD since last year, but because I was on steroids for other things, it helped mask the symptoms of GVHD.  As a result, I have to remain on a high dose of Prednisone for about 9 months.  Once again, my appetite has become equal to Megatron's hunger for domination and destruction.

I'm still battling the effects from my last cold.  I still have a lingering cough and some mild congestion as well.

In other news...

My personal website has undergone a humongous update.  There's new photos and drawings splattered all over the site.  So, if you're interested in seeing that, go on over to www.jonathonrose.com.   

Down

They told me the first time I got sick with the flu or even a cold that it would hit me hard, and be tough to get over.  Well, they were right.  For the past week, I've been down with the flu or a bad cold.  It started with fevers for a few days, and then the other symptoms set in.  (i.e., head congestion, coughing, watery eyes, low energy levels.)  

Used to be, when I would get sick, a cold would have me down for 2 days tops.  The flu, maybe 4 or 5 days.  But nowadays, ugh, I'm going on 8 days of feeling like I was hit by a school bus.  

I was off work most of last week, but managed to make a comeback today.  Between the Tamiflu and antibiotics I'm on, I think it's helping.  Certainly not hurting anyway.  

Hopefully, my immune system is figuring out how to fight.  This is how my new stem cells get broke in, right? 

Half Empty Tea Cups

We seem to be riding the bad news roller coaster lately, and quite frankly, I want this ride to stop.  No, it's just not fun anymore.  I'd rather be on the tea-cup ride at Disney, hearing 'It's a Small World Afterall' over and over again.  Yes, it's getting that bad.  

Earlier this year, we discovered a crack from floor to ceiling in one of our foundation walls in the basement.  We had water seeping in along the crack, creating pools of water on the floor.  So, that's getting fixed.

A friend of mine's best friend died last week after a dreadful fall from a ladder.  I played poker with him a few times, but my buddy knew him since they were kids.  

In the last month, I've put two distinct dents in my driver's truck door that I almost had no control over.  Anyone who knows me will understand my frustration about that.  For those that don't - I'm very anal when it comes to my vehicles.   

**sigh**


But I've been feeling good and am just trying to put last year behind me.  Little by little, it seems to get farther away.  My feet are still bothering me though.  Mostly towards the end of the work week.  It's like being on them more frequently somehow intensifies the numbness/soreness feeling.  But there are times when I feel like as long as I keep moving, they're fine.  It's when I sit down for a while, and then try to get up, it's hard to walk for the first few steps.  I prefer to keep moving, like the tea-cup ride - without the goofy music. 

Jonathon out.

It's Been Over a Year Now...

Ah, yes.  The Grammy's still suck.  

Oh.  

Woops.  Sorry.  Just thinking out loud there for a second.  Back to business.  I think I've finally returned to my normal self for a little while.  My balloon body has since disappeared thanks to the diuretic.  On Friday, I weighed in at the doctor's office at about 182 pounds.  A week earlier, I was pushing 200.  Scary that your body can carry around that much additional water.  I can fit into all my shoes and khaki's again!  Thought I was going to show up in sweats to work at one point.  Which, wouldn't have been an awful, at least for my comfort.  

For the longest time, the appearance of my hands have been affected by the radiation.  They have this red hue to them all the time.  It looks sort of like your hands were outside in the cold for too long.  The redness is finally starting to fade, and my skin color is slowly returning to normal.  

It's been just a little over a year since I was first diagnosed.  Hard to believe that much time has gone by already.  

What?  Now we have dancing washing machines on stage?  Seriously.  The Grammy's have lost it.  I think I'd actually rather be watching the Oscars.  

More later...