Tuesday, November 23, 2010

Thanksforgiving Life

At time of year when families get together for turkey, potatoes and those awful cranberries, we often need to be reminded of gifts we have in our lives.  When I say gifts, I don't mean bags with streamers hanging off of them;  I don't mean glitter-ridden, wrapped boxes either.  And I certainly don't mean the score you brought home last year from Macy's Black Friday sale.  


I mean life.  The life(s) that are in your life.  Not lives.  Life(s).  One of the many definitions in our dictionary under the word life, defines it as 'the animate existence or period of animate existence of an individual.'  Well, we all have people who exist in our lives.  That's not a new development.  What we have few of, is people that bring life to our lives;  People that bring light to areas of darkness;  People who won't walk the path for you, but show you the clearing through the forest to get there;  And people that pick you up when you've fallen down.  Each of us have an amount of people in our lives that do that for us.  It doesn't matter how many you have, only that you do.  


A friend of mine once said, 'It doesn't matter how much wealth you have or had;  but rather how many people showed up at your funeral.  That says what kind of a person you were.'  I don't truly believe in this statement, but it does hold some validity.  Are you more likely to be remembered as an asshole?  Or, are you more likely to be remembered as the person who'd do anything for anyone, regardless of personal benefit?  You choose.  Because at the end of the day, it's your actions that people judge you from, and your own conscience that you have to go to bed with.  


I present a challenge to my readers.  I wouldn't normally do this, but I'm in the spirit of Thanksgiving, so deal with it.  I challenge you to do something uncharacteristically nice for someone.  It can be a random someone, friend, wife, husband, family, etc.  No monetary gifts.  Just a simple act of kindness.  Why?  Because you DON'T have to;  Because it's NOT required;  Because everyone needs a little life brought into their life once in a while.  Gives them hope.  Reason.  Even humility.   Once you've completed the challenge, you must post what you did here on the blog, or on my Facebook post about it.   

When you're sitting around at the family tables passing around that nasty cranberry sauce, think about that.  Think about those that have brought life to your life, and wonder to yourself about how to pay them back for it.


Have a great Thanksgiving.  


~Jonathon

Friday, October 22, 2010

Jedi Bronchitis

Anakin Skywalker had it rough.  Poor kid had to leave his mother at a young age in hopes of becoming the greatest Jedi the universe had ever seen.  Many years later, he dukes it out with Kenobi, loses the battle, and gets thrown into a black suit and mask to survive.  Thus, transforming him into the seemingly evil, Darth Vader.  Without the mask and suit, Vader would die.  Having said that, everyone recognizes the raspy inhale and exhale heard through his mask in the films.  This is similar to how I've been breathing lately.  

Last week, I came down with bronchitis.  Or a mild form of it anyway.  Not good for someone who's already had pneumonia twice.  As a result, my doctors recommended that I use a nebulizer combined with albuterol.  The nebulizer, to me is a fancy word for 'tiny air compressor' with less syllables.  Albuterol is a drug that's used in rescue inhalers for people with asthma and things like that.  Once a day, I add the albuterol liquid to this mask adapter that's connected through the nebulizer, breathe normally, and BAM!  Insta-Vader.  Only without the kick-ass lightsaber.

The long short of it is basically that my lungs still have some scar tissue in or around my breathing vessels from my previous bouts with pneumonia.  When a person gets bronchitis, mucus starts to build up around those tubes and starts to limit the amount oxygen going through.  As a result, the oxygen levels in your bloodstream drop, you experience extreme shortness of breath, lots of nasty coughing and are really fatigued.  It actually feels a lot like pneumonia, without the fevers.  This is where the albuterol comes in.  Supposedly it'll assist in drying the mucus in my lungs.  I will most likely have to do this breathing treatment for a month or two, perhaps longer.  

In the meantime, while I find my lack of breath disturbing, I am still working.  But beneath the lightsaber hum and low force rumbles, television has become my new best friend...again.            

Tuesday, October 5, 2010

Octobupdate

Last month marked one year since I have returned to work.  Hard to believe it's been that long.  Despite the ups and downs we've had, I don't think I would trade it for being sickly off again.  No sir-ee.  

I met with Dr. Artz at UCH this past week.  He thought I was doing well.  I also had  pulmonary and bone density exams.  My pulmonary exam came back a little mixed.  They told me that my ability to exhale and hold that action has been in steady decline over the last few tests.  The amount of air my lungs are taking in is fine however.  My bone density was slightly below normal, but that was expected being that I'm still taking Prednisone.  (Steroid.)  So I have to go back next week for a CT Scan and pulmonary consultation just as a precaution.  

I go back to my local doctor for more vaccinations on Thursday of this week with my flu shot being on the list as well. Oh goody...more pokage.  

Now that most of my summer projects have come to a close, I have been drawing more lately and building models.  People have asked me a lot lately 'when do you have time to do that?'  The answer is simple:  I make time.  Because I think I have to.  For a while, I think I was trying to move a little too fast too quickly.  I found that I was wearing myself out to the point of shear exhaustion just trying to catch up on things.  Drawing and building models helps me keep busy, but slows me down to where my body can relax and recuperate.  Here's an F14 Tomcat I recently built - 





Linda - If you're still reading this blog, I have a surprise coming for you.  

Friday, August 6, 2010

The Battle Continues

One thing's for sure - I could never be an addict, shooting up with needles all the time.  After going through all this treatment, there's no way in hell I could self-puncture myself with even more drugs.  Nuh-uh.  No sir-ee bob.  


Yesterday I had to receive all my vaccines, like Polio, Hepatitis B, Tetanus and one other one I can't remember the name of.  As I sat in the exam room playing Hold'em on my iPhone, the nurse comes walking in with a stack of needles,  eerily reminding me of the doses of meds I'd receive in the hospital.  I tried to recall what it was like to receive these when I was a child.  But no memories surfaced.  I knew the Tetanus shot would make my arm sore, as I have had that one a few times over the years just from being a clumsy ass.  So I politely asked,


"What are these going to make me feel like afterwards?"


Nurse:  "Well, it's hard to tell really.  Everyone reacts differently.  I once had a patient pass out."


Me:  "Whoa, really?"


Nurse:  "Oh yeah!  I left her for a minute after administering them, came back in the room and she was lying face first on the floor."  


At this point, I'm thinking 'oh, that's just freakin' great.'  I start to go over all the medications I'm on in my head, wondering if any of them could cause a reaction like that.  She then starts gloving up and un-capping the needles.  My attention is quickly diverted to her hands.


Nurse:  "We call it the Vaso-vagal.  Happens all the time."  


Seriously?  Example That's going in my blog, I start thinking.  


I must spread awareness.  Shoot me in the face.  Vaso-vagal?  I don't know what's scarier...people passing out from vaccinations, or that it happens so damn often, there's an inter-office term for it.  She then lifts up my sleeve and,


**poke**
**poke**


Other arm - 


**poke**


Nurse:  "But you'll be fine, don't worry."


**poke**


Me:  "Yeah, next time - lead with that."


She just laughed.  I didn't pass out.  But I elected to stay for a few minutes afterwards just in case.  Needles to say, my arms feel like an old set of 2x4's.  All creaky and aged.  Small price to pay I guess, considering.


Vaso-vagal.  Hmph.   

Tuesday, May 18, 2010

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.

Tuesday, May 4, 2010

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:


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    

Monday, April 12, 2010

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!      

Thursday, March 11, 2010

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.   

Monday, March 1, 2010

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? 

Wednesday, February 10, 2010

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.

Sunday, January 31, 2010

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...

Monday, January 18, 2010

Back to the Grind

Aside from getting pneumonia, which I'm still recovering from, I've managed to put on about 7-10 more pounds and I've went up one full waist size. The lower portion of my body is extremely swollen. I'm not sure why, but I'm guessing it's due to the antibiotics and fluids they gave me while I was in the hospital. My waist, legs, knees, ankles and feet are all very swollen. Although I'm back to work today, it's very difficult to walk around. My legs feel very stretched and ballooned. They did prescribe me a diuretic which I have to pick up tonight. So, hopefully that will help.

Sometimes it can be really hard to stay positive after all this. I keep thinking, 'jeez - what's next?' But I have to remember that overall I'm doing pretty good. Until the last few weeks, I hadn't gotten sick at all. Which is pretty good for someone who's had a bone marrow transplant and his immune system erased. It just seems like when I really start to bounce back, something happens and I get knocked back again. One step forward, two steps back. But I can't look at it like that. I came home a weeks earlier than I was supposed to after my transplant. I haven't gotten a cold or the flu. I returned to work 2 months sooner than I was scheduled to. But I got an allergic reaction-related pneumonia over the holidays. Big deal. What else you got to throw at me?

Bring it.


Tuesday, January 12, 2010

Getting Closer...

My doctors still believe I have Eosinophilic Pheunomonia. So far, my blood cultures and other tests have all came back negative for infection, be it viral, fungal or bacterial. That also means I'm not contagious, which is good.

I was able to walk the hospital halls yesterday without oxygen. My breathing is still far from normal, but it's getting better every day. My doctors tell me if I remain on this track and continue to do well, they're going to send me home tomorrow! Yes! Finally!

I still be taking a pretty healthy dose of Prednisone, but that's okay. It does wonders for my appetite anyway. Speaking of that, my weight is still slowly rising too. I weighed in at 183 this morning. I'm still about 10 pounds lighter than I was before all this started, but I'm definitely on the right track for gaining it back. (Probably thanks to Taco Bell.) Ha-ha.

Daniel - my camera is unfortunately stuck at home, so I haven't had the chance to take more pictures with it. My wife brought a lot with her for me at the hospital. Everything but the kitchen sink actually. But when I return home, I'll get back to that! Promise.

Monday, January 11, 2010

Eos-something Pnuemonia

Well, after nearly 5 days of deliberation, the doctors here, all 187 of them, decided I have something called Eosinophilic Pneumonia. Huh? Yeah, I still can't pronounce it either. Now, what does that mean? Here it is straight from Wiki:

Eosinophilic pneumonia (EP) is a disease in which a certain type of white blood cell called an eosinophil accumulates in the lung. These cells cause disruption of the normal air spaces (alveoli) where oxygen is extracted from the atmosphere. Several different kinds of eosinophilic pneumonia exist and can occur in any age group. The most common symptoms include cough, fever, difficulty breathing, and sweating at night. EP is diagnosed by a combination of characteristic symptoms, findings on a physical examination by a health provider, and the results of blood tests and x-rays. Prognosis is excellent once most EP is recognized and treatment with corticosteroids is begun.

So, in other words, they're putting me back on Prednisone. I had just finished that drug in mid December and now I'll be back on it again. I don't know what it is but it seems like that is this hospital's answer to everything problematic with me.

"He's got a rash?"
"Put him on Prednisone!"

"He's got pneumonia?"
"Put him on Prednisone!"

"What? He broke his foot!?"
"Put him on Prednisone...seriously."

He-heh. Doctors.

I feel okay otherwise. I'm still very short of breath when I get up to do something. But as of today it's not taking me as long to re-catch my breath, so that's good. I'm still on oxygen for right now, but the plan today is to get me off of my IV meds/fluids and starting taking my steroids orally. Which, is a good sign that I could be returning home in the next day or so. I hope so....because I don't know how much longer I can handle being in the hospital. I think I've done my bit and part for hosptial stays for 3 people in the last year.

More later folks.

Saturday, January 9, 2010

No updates, no news

Today has been very slow.  No new tests for Jonathon, and no results from any of the tests the last few days.  So... we're just in wait and see.  Again - thank you to everyone sending prayers. We are so grateful to have so many caring wonderful people in our lives.

Friday, January 8, 2010

Back to Chicago for complications

Well, they promised us that Jonathon would end up back in the hospital at some point after the transplant, and despite going over 6 months with no issues, here we are.  Some kind of infection is trying to take over Jonathon's lungs, so we're in Chicago to get things fixed since a round of antibiotics at home didn't help, and things just kept getting worse.  Today he got a bronchoscopy so that they could get a sample of whatever it is growing in his lungs, and then hopefully they'll be able to grow whatever it is and target it with the right drugs. They have him on oxygen since those levels were kind of low and an IV antibiotic.  There have been a number of CT scans and xrays and such too.  We've seen a pulmonologist and an infectious disease specialist.  So far, he's feels pretty much ok other than being super fatigued and coughing occasionally.

Thank you everyone for the prayers and positive thoughts.  We know they helped before, so we're sure they'll help now too.  We don't know how long Jon might be here, and he's hoping to get back home to South Bend real soon.  We'll keep everyone posted.

Tuesday, November 23, 2010

Thanksforgiving Life

At time of year when families get together for turkey, potatoes and those awful cranberries, we often need to be reminded of gifts we have in our lives.  When I say gifts, I don't mean bags with streamers hanging off of them;  I don't mean glitter-ridden, wrapped boxes either.  And I certainly don't mean the score you brought home last year from Macy's Black Friday sale.  


I mean life.  The life(s) that are in your life.  Not lives.  Life(s).  One of the many definitions in our dictionary under the word life, defines it as 'the animate existence or period of animate existence of an individual.'  Well, we all have people who exist in our lives.  That's not a new development.  What we have few of, is people that bring life to our lives;  People that bring light to areas of darkness;  People who won't walk the path for you, but show you the clearing through the forest to get there;  And people that pick you up when you've fallen down.  Each of us have an amount of people in our lives that do that for us.  It doesn't matter how many you have, only that you do.  


A friend of mine once said, 'It doesn't matter how much wealth you have or had;  but rather how many people showed up at your funeral.  That says what kind of a person you were.'  I don't truly believe in this statement, but it does hold some validity.  Are you more likely to be remembered as an asshole?  Or, are you more likely to be remembered as the person who'd do anything for anyone, regardless of personal benefit?  You choose.  Because at the end of the day, it's your actions that people judge you from, and your own conscience that you have to go to bed with.  


I present a challenge to my readers.  I wouldn't normally do this, but I'm in the spirit of Thanksgiving, so deal with it.  I challenge you to do something uncharacteristically nice for someone.  It can be a random someone, friend, wife, husband, family, etc.  No monetary gifts.  Just a simple act of kindness.  Why?  Because you DON'T have to;  Because it's NOT required;  Because everyone needs a little life brought into their life once in a while.  Gives them hope.  Reason.  Even humility.   Once you've completed the challenge, you must post what you did here on the blog, or on my Facebook post about it.   

When you're sitting around at the family tables passing around that nasty cranberry sauce, think about that.  Think about those that have brought life to your life, and wonder to yourself about how to pay them back for it.


Have a great Thanksgiving.  


~Jonathon

Friday, October 22, 2010

Jedi Bronchitis

Anakin Skywalker had it rough.  Poor kid had to leave his mother at a young age in hopes of becoming the greatest Jedi the universe had ever seen.  Many years later, he dukes it out with Kenobi, loses the battle, and gets thrown into a black suit and mask to survive.  Thus, transforming him into the seemingly evil, Darth Vader.  Without the mask and suit, Vader would die.  Having said that, everyone recognizes the raspy inhale and exhale heard through his mask in the films.  This is similar to how I've been breathing lately.  

Last week, I came down with bronchitis.  Or a mild form of it anyway.  Not good for someone who's already had pneumonia twice.  As a result, my doctors recommended that I use a nebulizer combined with albuterol.  The nebulizer, to me is a fancy word for 'tiny air compressor' with less syllables.  Albuterol is a drug that's used in rescue inhalers for people with asthma and things like that.  Once a day, I add the albuterol liquid to this mask adapter that's connected through the nebulizer, breathe normally, and BAM!  Insta-Vader.  Only without the kick-ass lightsaber.

The long short of it is basically that my lungs still have some scar tissue in or around my breathing vessels from my previous bouts with pneumonia.  When a person gets bronchitis, mucus starts to build up around those tubes and starts to limit the amount oxygen going through.  As a result, the oxygen levels in your bloodstream drop, you experience extreme shortness of breath, lots of nasty coughing and are really fatigued.  It actually feels a lot like pneumonia, without the fevers.  This is where the albuterol comes in.  Supposedly it'll assist in drying the mucus in my lungs.  I will most likely have to do this breathing treatment for a month or two, perhaps longer.  

In the meantime, while I find my lack of breath disturbing, I am still working.  But beneath the lightsaber hum and low force rumbles, television has become my new best friend...again.            

Tuesday, October 5, 2010

Octobupdate

Last month marked one year since I have returned to work.  Hard to believe it's been that long.  Despite the ups and downs we've had, I don't think I would trade it for being sickly off again.  No sir-ee.  

I met with Dr. Artz at UCH this past week.  He thought I was doing well.  I also had  pulmonary and bone density exams.  My pulmonary exam came back a little mixed.  They told me that my ability to exhale and hold that action has been in steady decline over the last few tests.  The amount of air my lungs are taking in is fine however.  My bone density was slightly below normal, but that was expected being that I'm still taking Prednisone.  (Steroid.)  So I have to go back next week for a CT Scan and pulmonary consultation just as a precaution.  

I go back to my local doctor for more vaccinations on Thursday of this week with my flu shot being on the list as well. Oh goody...more pokage.  

Now that most of my summer projects have come to a close, I have been drawing more lately and building models.  People have asked me a lot lately 'when do you have time to do that?'  The answer is simple:  I make time.  Because I think I have to.  For a while, I think I was trying to move a little too fast too quickly.  I found that I was wearing myself out to the point of shear exhaustion just trying to catch up on things.  Drawing and building models helps me keep busy, but slows me down to where my body can relax and recuperate.  Here's an F14 Tomcat I recently built - 





Linda - If you're still reading this blog, I have a surprise coming for you.  

Friday, August 6, 2010

The Battle Continues

One thing's for sure - I could never be an addict, shooting up with needles all the time.  After going through all this treatment, there's no way in hell I could self-puncture myself with even more drugs.  Nuh-uh.  No sir-ee bob.  


Yesterday I had to receive all my vaccines, like Polio, Hepatitis B, Tetanus and one other one I can't remember the name of.  As I sat in the exam room playing Hold'em on my iPhone, the nurse comes walking in with a stack of needles,  eerily reminding me of the doses of meds I'd receive in the hospital.  I tried to recall what it was like to receive these when I was a child.  But no memories surfaced.  I knew the Tetanus shot would make my arm sore, as I have had that one a few times over the years just from being a clumsy ass.  So I politely asked,


"What are these going to make me feel like afterwards?"


Nurse:  "Well, it's hard to tell really.  Everyone reacts differently.  I once had a patient pass out."


Me:  "Whoa, really?"


Nurse:  "Oh yeah!  I left her for a minute after administering them, came back in the room and she was lying face first on the floor."  


At this point, I'm thinking 'oh, that's just freakin' great.'  I start to go over all the medications I'm on in my head, wondering if any of them could cause a reaction like that.  She then starts gloving up and un-capping the needles.  My attention is quickly diverted to her hands.


Nurse:  "We call it the Vaso-vagal.  Happens all the time."  


Seriously?  Example That's going in my blog, I start thinking.  


I must spread awareness.  Shoot me in the face.  Vaso-vagal?  I don't know what's scarier...people passing out from vaccinations, or that it happens so damn often, there's an inter-office term for it.  She then lifts up my sleeve and,


**poke**
**poke**


Other arm - 


**poke**


Nurse:  "But you'll be fine, don't worry."


**poke**


Me:  "Yeah, next time - lead with that."


She just laughed.  I didn't pass out.  But I elected to stay for a few minutes afterwards just in case.  Needles to say, my arms feel like an old set of 2x4's.  All creaky and aged.  Small price to pay I guess, considering.


Vaso-vagal.  Hmph.   

Tuesday, May 18, 2010

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.

Tuesday, May 4, 2010

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:


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    

Monday, April 12, 2010

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!      

Thursday, March 11, 2010

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.   

Monday, March 1, 2010

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? 

Wednesday, February 10, 2010

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.

Sunday, January 31, 2010

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...

Monday, January 18, 2010

Back to the Grind

Aside from getting pneumonia, which I'm still recovering from, I've managed to put on about 7-10 more pounds and I've went up one full waist size. The lower portion of my body is extremely swollen. I'm not sure why, but I'm guessing it's due to the antibiotics and fluids they gave me while I was in the hospital. My waist, legs, knees, ankles and feet are all very swollen. Although I'm back to work today, it's very difficult to walk around. My legs feel very stretched and ballooned. They did prescribe me a diuretic which I have to pick up tonight. So, hopefully that will help.

Sometimes it can be really hard to stay positive after all this. I keep thinking, 'jeez - what's next?' But I have to remember that overall I'm doing pretty good. Until the last few weeks, I hadn't gotten sick at all. Which is pretty good for someone who's had a bone marrow transplant and his immune system erased. It just seems like when I really start to bounce back, something happens and I get knocked back again. One step forward, two steps back. But I can't look at it like that. I came home a weeks earlier than I was supposed to after my transplant. I haven't gotten a cold or the flu. I returned to work 2 months sooner than I was scheduled to. But I got an allergic reaction-related pneumonia over the holidays. Big deal. What else you got to throw at me?

Bring it.


Tuesday, January 12, 2010

Getting Closer...

My doctors still believe I have Eosinophilic Pheunomonia. So far, my blood cultures and other tests have all came back negative for infection, be it viral, fungal or bacterial. That also means I'm not contagious, which is good.

I was able to walk the hospital halls yesterday without oxygen. My breathing is still far from normal, but it's getting better every day. My doctors tell me if I remain on this track and continue to do well, they're going to send me home tomorrow! Yes! Finally!

I still be taking a pretty healthy dose of Prednisone, but that's okay. It does wonders for my appetite anyway. Speaking of that, my weight is still slowly rising too. I weighed in at 183 this morning. I'm still about 10 pounds lighter than I was before all this started, but I'm definitely on the right track for gaining it back. (Probably thanks to Taco Bell.) Ha-ha.

Daniel - my camera is unfortunately stuck at home, so I haven't had the chance to take more pictures with it. My wife brought a lot with her for me at the hospital. Everything but the kitchen sink actually. But when I return home, I'll get back to that! Promise.

Monday, January 11, 2010

Eos-something Pnuemonia

Well, after nearly 5 days of deliberation, the doctors here, all 187 of them, decided I have something called Eosinophilic Pneumonia. Huh? Yeah, I still can't pronounce it either. Now, what does that mean? Here it is straight from Wiki:

Eosinophilic pneumonia (EP) is a disease in which a certain type of white blood cell called an eosinophil accumulates in the lung. These cells cause disruption of the normal air spaces (alveoli) where oxygen is extracted from the atmosphere. Several different kinds of eosinophilic pneumonia exist and can occur in any age group. The most common symptoms include cough, fever, difficulty breathing, and sweating at night. EP is diagnosed by a combination of characteristic symptoms, findings on a physical examination by a health provider, and the results of blood tests and x-rays. Prognosis is excellent once most EP is recognized and treatment with corticosteroids is begun.

So, in other words, they're putting me back on Prednisone. I had just finished that drug in mid December and now I'll be back on it again. I don't know what it is but it seems like that is this hospital's answer to everything problematic with me.

"He's got a rash?"
"Put him on Prednisone!"

"He's got pneumonia?"
"Put him on Prednisone!"

"What? He broke his foot!?"
"Put him on Prednisone...seriously."

He-heh. Doctors.

I feel okay otherwise. I'm still very short of breath when I get up to do something. But as of today it's not taking me as long to re-catch my breath, so that's good. I'm still on oxygen for right now, but the plan today is to get me off of my IV meds/fluids and starting taking my steroids orally. Which, is a good sign that I could be returning home in the next day or so. I hope so....because I don't know how much longer I can handle being in the hospital. I think I've done my bit and part for hosptial stays for 3 people in the last year.

More later folks.

Saturday, January 9, 2010

No updates, no news

Today has been very slow.  No new tests for Jonathon, and no results from any of the tests the last few days.  So... we're just in wait and see.  Again - thank you to everyone sending prayers. We are so grateful to have so many caring wonderful people in our lives.

Friday, January 8, 2010

Back to Chicago for complications

Well, they promised us that Jonathon would end up back in the hospital at some point after the transplant, and despite going over 6 months with no issues, here we are.  Some kind of infection is trying to take over Jonathon's lungs, so we're in Chicago to get things fixed since a round of antibiotics at home didn't help, and things just kept getting worse.  Today he got a bronchoscopy so that they could get a sample of whatever it is growing in his lungs, and then hopefully they'll be able to grow whatever it is and target it with the right drugs. They have him on oxygen since those levels were kind of low and an IV antibiotic.  There have been a number of CT scans and xrays and such too.  We've seen a pulmonologist and an infectious disease specialist.  So far, he's feels pretty much ok other than being super fatigued and coughing occasionally.

Thank you everyone for the prayers and positive thoughts.  We know they helped before, so we're sure they'll help now too.  We don't know how long Jon might be here, and he's hoping to get back home to South Bend real soon.  We'll keep everyone posted.