Life A.C. (After Cancer)

A few weeks ago, I came across an article on the New York Times website titled Lost in Transition After Cancer by Suleika Jaouad.  I was absolutely floored by this article and appreciated its unabashed description of something that I too have struggled with, even 6 years after treatment.  Please read Suleika's article first before continuing on to mine.  Go ahead.  Click here.  I'll wait patiently.  I've never met Suleika, but after reading her article, I have a tremendous amount of respect for her for being courageous enough to share with the world her own story so intimately.  This is my attempt to do the same, and I thank her for giving me the courage to do so.

 Much like Suleika's situation, I too had went through similar treatments with chemotherapy, radiation and eventually a bone marrow transplant in 2009.  I wrote about it regularly.  The daily blog posts kept me somewhat sane as I tried to focus myself on the positive sides of being stricken with something that wasn't supposed to happen to me.  I tried to seem witty and even comical at times to maintain an "I can deal with this" attitude.  I'm a decent writer.  An artist.  A designer.  A husband.  A brother.  And a son.  I treated people with respect.  I paid my bills on time.  I kept my mowing lines straight.  I didn't sing in the shower, but I sang in my truck.  I played guitar.  I signaled my intentions when driving.  I played with my dogs and helped my neighbors when they needed it.  Who did I piss off in a past life to deserve this?  Six years later, I still often wonder.  

During the Spring of 2009, the post-diagnosis war began.  It's the war that took place behind the curtain.  The war I didn't write about.  I didn't know it at the time, but this was the time that would forever change who I was as a person.  With each visit to hospitals, local clinics and Universities, my once strong mental health foundation began to slowly crumble.  Not only was I fighting for my survival physically, I was fighting to keep my emotional state from completely unraveling.  And I was failing.  I put on a brave face to my friends and some of my family.  They'd ask how I was.  I'd tell them I was hanging in there.  The reality was the polar opposite.  I was scared.  I was afraid I was going to die.  Alone.  I was afraid that my wife and my family would have to plan my funeral.  I was afraid that I wouldn't get to do all the things I wanted to do, before my actual time came.  I had no idea what those things were, but I knew I wanted the chance to find out.  Others I knew who had been diagnosed with Leukemia were falling victim too soon.  I often talked with Steve and Alison, a couple I got to know in South Africa.  Steve had been diagnosed around the same time as myself.  It didn't end well for them.  I watched certain people from my almost daily infusion lab visits vanish.  I also connected with a man named Daniel from Romania.  He fought hard for two straight years before dying in 2012.  These thoughts swallowed me from hour to hour.  If they can't make it through this, how can I?  I didn't want to die.  I was not ready.  My friend Damon and his family came to see me a few times in the hospital.  He was a Leukemia survivor.  Looking at him gave me hope.  Even if it was only a glimmer.  

I never talked about the days that I awoke with barely enough strength to rise out of bed.  Or, the days when I did get up, that it took me 2 hours to take a bath and I spent the rest of the day on the couch sleeping.  Simply emptying the dishwasher was a monumental task that took every ounce of ambition I could muster, and even that required a break between racks.  Before, I was a capable person who didn't rely on anyone.  But now, I had reached a point where I couldn't even button up my shirt some days because the tremors in my hands were so severe.  These feelings weighed my brain down and made it heavier, collapsing the once sturdy walls that supported my consciousness.  Buried in the rubble beneath, you can find the hints of depression, anxiety, fear and even anger.  It was easy to forget that the world didn't stop just because I got sick.  I had to keep reminding myself that the world kept moving, even when I had to stop.

It wasn't until one weekend that I spent at my parent's house when I began my long journey back.  My Stepdad was driving me back home one day when I began to complain about the amount of drugs I was taking and that it was making me crazy.  He said to me "You know, you take all these drugs to fix the things that are wrong with you and to prevent you from getting worse with infection."  "Yes, I know."  I said, knowing he wasn't finished. 
"But there's no drug out there that can make you feel better about being you."  He continued.  "You have to want it.  There's no magic pill you can take to give you strength enough to take a walk down the block.  You just have to get up and fucking do it."  His words hit me like the sound of thunder shaking my house at midnight.  It was words I needed to hear.  It was in that moment that I realized how far I had really fallen.  It was especially meaningful coming from man who, 30 years prior had broken his neck in a motorcycle accident.  A man who survived. A man who, in fact, walked again.  A fighter.  A fellow soldier who just dared me to do better than him, whether he realized it or not.  Was I going to let him down?  Well, hell no.  It didn't matter that most of my hair had fallen out.  It didn't matter that I had lost nearly 60 pounds.  And it didn't matter that I barely had the strength to make it up my driveway that day.  What mattered, is that I decided to keep trying.  

I rehabilitated myself mentally and physically over the next few months.  I tried to immerse myself in the every day, trying desperately to find a sense of normal again.  I built things around the house.  I fixed problems with our home that were put off while I was too sick to deal with them.  I went to the races with my Dad who pushed me around all day in a wheelchair because I couldn't walk long distances.  It was almost as if my body dispersed energy quotas for each day.  And if you went over the amount your body was willing to give you, you paid the price.  But I kept pushing anyway.  I even returned to work.  I never would've thought that returning to work would give me so much hope.  But understand, I needed to matter again.  I needed a purpose.  The world had gotten along without me just fine.  It was time for me to adapt to this new world that was seemingly a full year ahead of me.  I needed to prove that the world still needed me for something.  

By Fall of 2009, treatments and doctor appointments slowed, as my strength began to return day by day at turtle speed.  I still couldn't draw or write very well.  I also couldn't play guitar.  My hands were still very shaky and weak from treatment.  The tremors had started to subside, but the unsteadiness and weakness within them remained.  My penmanship was sacred to me.  I took a lot of pride in the way my writing and art looked on paper.  I had to sign ton of patient forms while in treatment.  Each one I signed made me feel truly embarrassed to show to anyone.  I knew I would someday return to art, writing and even playing my guitars if I was patient, and kept trying.

Before I go further, I need to go back a few years.  I married my wife Katie in 2005.  We had a tiny wedding.  I won't bore you with the details on that, save for one.  We knew wanted a really great photographer to capture our day.  We didn't care that we were going to spend more on photography than my wife's wedding dress to get it.  We wanted an artful depiction of our day and we were willing to pay through the nose to get it.  And we did.  A few weeks later, we received our proofs, and they were magical.  Jamie (our photographer) had done her job.  Her photos are still special to me today.  Thanks to Jamie, I'd become mesmerized with photography.  But finding the time to learn it however, was a different story.  Until now.

I knew I still couldn't draw, write, or even dream about playing a Dave Matthews song on my guitar.  Crash was a nightmare, and trying mimic Ants Marching was simply a pipe dream.  But there was one thing I was sure I could do.  I knew I could push a shutter button.  What's more, is that I had the time to learn, and even if I didn't, I'd make time for it.  This was something I needed to do.  My wife bought me a Nikon Camera I still use today that year for Christmas.  I experimented.  I read.  I studied.  I traveled to seminars.  Along the way I shared my experiences most with her, who still to this day is amazed by the fact that not only did I make use of her gift, but expanded upon it with diligence beyond anything she could've predicted.  

In the above photos, from Christmas 2009, you can see me holding it.  Fun fact - the photo on the left was taken that same day and is used today as Facebook avatar.  

A few years and 20,000 plus photos later, I decided to start a business with it, and Jonathon Rose Design was born.  The rest is history.  Oh, and in case you were wondering if my drawing ability returned...yes, it did.  I even helped illustrate an entire children's book in 2011 that's still sold on Amazon.  I can also play the shit out of Ants Marching now.

Last week, my medical port was removed.  For those that don't know, it's a device that allows doctors to access you to administer fluids, drugs, etc., without having to poke your arms constantly.  It's implanted in your chest, just below the collar bone.  It was a part of my body for 6 years.  During that time, I often wondered why my doctors chose to keep it in that long.  It hadn't been accessed since 2012.  Did they fear I'd need it again?  Would my cancer come back?  Did they know something I didn't?  These are the questions that surface in my mind every single day.  The questions disguise themselves as little chisels, trying to chip away at my now solid mental foundation.  The bricks and mortar of this foundation hide the scars and battle wounds from treatment.  The wounds like Osteoporosis, Pre-Diabetes, Graft vs. Host Disease, Scleroderma, fatigue, and cataracts just to name a few.  

As odd as it may seem, I'm thankful for the experience.  Not that I would ever want to go through it again, but it taught me a lot about myself, my family and my friends.  It taught me to appreciate life more, in all forms;  To appreciate small victories;  To know when there's a time to talk and when it's more important to listen;  And when to laugh so hard, you cry.  

I listen to the world around me from day to day and sometimes I just want to scream at the top of my lungs.  I want to tell the world to stop worrying about the little, trivial things that really don't matter.  Some whine that their car's giving them trouble.  Some bitch about their bosses or their work.  Others complain about their children, or the weather.  Put aside the drama.  Quell the negativity already.  Some people just don't have a clue as to what a bad day really is.

Are you familiar with the Lord of the Rings film The Return of the King?  Near the end of the film, Frodo, Sam, Merry and Pippin are sitting at a table in the Green Dragon.  The crowd around them is gleefully carrying on, dancing, drinking, completely unaware that Middle Earth had been that close to obliteration.  Sauron was defeated, but at great cost.  Lives were lost.  Lives were scarred.  The Hobbits said no words to each other.  None were needed.  Ocassionally, I feel that way.  I imagine my family and I could be sitting at that same table, listening to the sound of the blissful ignorance around us.  We would share similar gazes and wouldn't need to say a word either.  Because we'd been there.  We understood.  We survived it.

At the end of the day, it was my Camera that had single-handedly sent me down a path that was filled with both inspiration and healing.  It became a doorway to a land I never thought I'd see again.  A land, called the future.  A land where I wasn't a cancer patient.  It was a place where I began to see life from behind my lens. A place where memories were frozen in time and details too often overlooked by all of us were kept safe.  Safe from harm.  Safe from death.  Safe from Leukemia.  That's what my Camera gave me. 

Beneath my thicker skin, I can still feel the battle wounds of old, remember the smell of hospital sanitizer, and the irritating sounds from the vital monitors.   As a soldier of survival, I've returned home from the war with no medals to speak of.  I don't have any red carpet charity galas to attend, and no fundraisers were held specially in my name.  But I do have an army of my own superheroes who don't wear tights or carry Vibranium shields with them.  They are my family.  They helped me through it all.  A bond I would describe as stronger than Adamantium.  And yes, we have a Hulk.  

How does one return to a normal life, after cancer?  I can't tell you that.  I only know what worked for me.  Maybe the question you should be asking instead is, what's your Camera?

6 Years Ago Today

Jonathon January 2015

"Did you get there okay?"

I woke up this morning to the annoying sound of my alarm, like any other morning.  I gave no thought to the date, but rather thought more along of the lines of what I was going to wear, and if it had snowed overnight.  If it snowed, or was icy, I knew I probably wouldn't drive the bypass to work.  Us South Bend folk refer to US20/US31 as the "bypass."  It's an east/west 4 lane highway that's notorious for being slick and having hundreds of accidents every year.  When it's bad in the mornings, I won't take it.  I'll drive through town the long way.  And then my family will be texting me the whole way.

"Stay off the bypass."

"Accident near the Ironwood exit...watch out."  

"Slide-off near Elm, be careful."

"They just closed it."

"Did you get there okay?"

As a matter of fact, I did today.  But 6 years ago, I had doubts.  6 years ago today, I would wake up to a very different morning.  It was the day I was diagnosed with Leukemia.  That day I wasn't worried about my commute to work, what I was wearing or even if it had snowed the night before.  I was worried about a much more important thing: survival.  

My doctor told me that if I didn't seek treatment fast, I wouldn't make it to Summer.  While most people at that time were worried about what was going to happen on the next episode of LOST, my family and I were thrown into an episode of our own called 'Survivor: Jonathon Style.'  

How does one even consider where we should get treatment?  What hospital do you choose to save your life?  Or, more importantly, what doctor?  The answers came slow throughout the day.  And after a huge amount of research and conversations with doctors, the decision was made on The University of Chicago. I just put a University in charge of saving my life.  Yep.  I did that.  

Over the last 6 years, I'm not gonna lie...it hasn't been easy.  I've had a few surgeries, developed Osteoporosis, got cataracts, and am now battling some GVHD.  (Graft Versus Host Disease.)  Not to mention some diabetic nerve pain that can be downright unruly some days.  But you know what?

I got here.  I am still here.  I am still fighting.  

I didn't come alone.  A special thanks to all my friends and family who battled the hardships with me.  You know who you are.  You also know I love all of you.  And a very special thanks goes out to my wife.  If it wasn't for her, I don't know what I would've done.   She was my constant reminder that I couldn't give up.  She will always be the light in all my dark places.  

So yeah.  I did get here okay...after all.  

Bring on Summer.        

 

Jonathon & Jenna Feb. 2009

   

Jonathon & Maya March 2009

   

        

PUVA and GVHD

From the always-growing world of acronyms, I bring you another.  PUVA.  

Here's the long definition:  PUVA is an acronym for psoralen and ultraviolet A. PUVA refers to the interaction of long wavelength ultraviolet light (320-400 nm) with a pharmaceutical molecule of plant origin, psoralen, producing a type of "photochemotherapy." PUVA is useful in treating a number of human diseases.

While I'm not under-going treatment for Leukemia anymore, my doctors have decided they want me try this in hopes of it relieving some of the skin tightness and discoloration I have from GVHD.  (Graft-Versus Host Disease.)  

So what does this mean?  I'll sum it up for you.

Basically, 3 times a week, I show up to the dermatologist's office and step inside this vertical-tanning-bed-like machine for a minute or so.  It actually takes longer to drive there than it does to have the actual treatment.  After 3 months of this, there's hope that the light frequencies they use will help to clear my discoloration and tightness on my skin.  I still have some issues with flexibility because my skin is so tight.  So, in other words, squatting or bending over is still somewhat painful.  You won't see me signing up for intense yoga classes any time soon.  

You're probably thinking, 'what else does a dermatologist use that for??'  I wondered the same thing because I can't imagine a teenage girl showing up there and saying, 'I wanna tan.'  They also use this machine to treat Lymphoma and Psoriasis.

I've done 2 sessions so far and haven't really experienced any side effects yet, other than drier skin.  They did tell me it will most likely give me a slow tan and possibly a light sunburn until my skin gets a little more used to it.  We'll see what happens.  I figure I am at least getting a head start on my summer tan before Spring is even here.    

I hope you like the new look on the blog.  I also added a link to my personal photography website on the right.  So, if you're interested in seeing some interesting photos you can check that out.  Bring on 2013 and all the good that it has to offer.  

The Dragon's Heart

Anyone ever see the movie Dragonheart?  The one with Dennis Quaid?  Pretty solid movie, really.  I'll get to why I'm asking in a moment  The movie is about a young king who was stabbed in the heart as a young man.  In order to save his life, a noble dragon played by Sean Connery, gives the young king half of his heart so that he would live.  Over the years, the young king grew into a vicious tyrant.  Blaming the dragon for the king's turn to evil, Quaid's character, Bowen, vows to rid the world of dragons by slaying every one he encounters.  I'll get back to why I mentioned this later.  I promise.  

In early September, I started having more breathing issues.  Around 2-3am, I would wake up from a sound sleep, unable to catch my breath.  As long as I sat up, I could catch my breath and all would be fine again.  This went on and off for a week or so when I decided to involve my doctors.  After a few days of testing, an echo-cardiogram revealed heart failure.  Don't worry...I'm just fine...wouldn't be making you read a blog post if I wasn't...but it was a heavy concern for us.  For someone who's only 36, how does this happen?  And the answer is...we don't know.  And may never know.  Our primary suspects are radiation and chemotherapy.  We've read that just those 2 things combined can a have a delayed effect on certain people.  Specifically, their hearts.  Unfortunately, there's just not enough history or data to back this up.  But that's my doctor's theory.  

So, what did we do?  And that answer was easy, at least coming from my doctors: we'll just add more drugs to the regimen.  Awesome.  They put me on a few low blood pressure drugs, a diuretic, and aspirin.  They also put me on a low sodium diet, limited to 1500mg of sodium per day.  Talk about rough for a guy who's always eating because of my steroids anyway.  It hasn't been easy, but my breathing at night has been much better and I'm returning to normal.  Whatever that is.  I'm constantly redefining what's normal anymore.  

I'm grateful to have survived an awful disease.  I'm grateful for the care that has been given to me.  But there are days when I feel very much like Bowen.  In that, certain things have happened, that I can't change, and I need to place that anger and blame somewhere;  That the world and my doctors are fumbling for solutions because my situation is unique compared to some;  That I feel like a guinea pig for them to poke and experiment on.  And I can't seem to catch a break sometimes with these drug additions.  Good gawd.  I'm taking over 20 pills a day now.  How can anyone know how all these medications interact with one another?  And in the long-term?  We don't.  We just have to keep our faith in that my doctors...all 17 of them...are all on the same page.  Shouldn't be too hard, right?  Nah.  Next, I'll start doing differential equations just to change things up a bit.  Till that happens, I'm officially counting my big-ass pill box as added square footage onto my house's value.  Seriously.  The thing should have its own zip code and fire department.  Later taters.    

3 Year Anniversary of BMT

This weekend marks my 3rd anniversary of my bone marrow transplant in 2009.  It doesn't feel like it's been that long, but it has.  It's been a wild ride over the last few years, but overall, I'm doing quite well.  Thanks to the transplant, I'm still in remission and getting a little stronger every day.  In the last few weeks, I've probably felt better than I have since the start of treatment 3 years ago.  


In April, I started a program called Pulmonary Rehabilitation.  It's basically a fancy term for a workout session, while they monitor my saturation (oxygen levels) and my blood pressure.  It's an hour long each time, 3 days a week.  It's mostly treadmill work with the use of rowing machines, bikes and weight lifting.  I hate exercise and I always have.  But I can honestly say that I do feel better because of it.  My breathing has improved a little, but what's more become more affected is my energy levels.  I feel that when the days go on, I have more continued strength to do the things I want to do or need to do.  


I haven't really mentioned this publicly yet, but I will now.  A few months back, we finally made contact with my donor.  Yes, THE donor.  I will not mention her identity here, but we've shared stories over email and pictures.  We are anxious to meet her someday in person.  She seems like a delightful person and we're looking forward to learning more about one another.  It's amazing how long it actually takes to establish a link between parties, but the hospitals have those privacy policies in place to protect both sides.  And with good reason.  


So...this weekend, sit back.  Relax.  Have a drink.  Or two.  Or five.  Enjoy the weather.  Stop and smell the roses.  Why?  Because you CAN.  We're going to. Because put simply, 3 years ago tomorrow, my donor gave me the ability to continue on with my life to enjoy these times.  And by golly, that's what I'm going to do.  

The Better than Death Approach

This post is going to sound like a huge rant and it kind of is, but I'm going to add my saving disclaimer to it, the better than death approach, and then all will be right in the world.  Trees will explode with leaves again, it'll stop snowing, and I'll pretend I'm on a lake somewhere on a Summer day with a fishing pole in my hand.  Or, a camera.  Either one.


So far, in the last year, my feet still burn and hurt from day to day.  It has gotten slightly better, but not much.  My eyes are completely tweaked.  At 36, I've now had cataract surgery on both eyes.  At a distance, I can see okay.  Up close, not so much.  So I've become one of those people who constantly says, 'Wait, let me grab my glasses.'  I also developed Osteoporosis.  My hair is drastically thinning.  And now, I'm at HIGH risk for developing Diabetes.  I start a new drug to combat that tonight.  More drugs.  Ugh.  Here it comes.  Wait for it.  It's better than death.  


Who do I have to thank for all this?  Steroids, and all the other drugs.  Which, I thought I'd go into while I'm here, to give you all some idea of the craziness involved with these medications.  Below is an actual photo I took of all the drugs I'm now on.  Once a day...every day.  It's a shame these aren't colored more like Skittles.

  


The list is as follows:
-Prednisone.  Evil.  Helpful, yet sinister.
-Acyclovir.  Anti-viral.
-Bactrim.  Antibiotic.  
-Prograf.  Immune suppressant.  
-Sacrolimus.  Immune suppressant.
-Fosamax.  Osteoporosis.  
-Fenofibrate.  Cholesterol/Triglycerides.  
-Crestor.  Cholesterol.
-Amlodipine.  Blood pressure.
-Diflucan.  Anti-fungal.
-Penicillin.  Antibiotic.
-Metformin.  Diabetes treatment.  
-Ambien.  Can't sleep without it because of the steroids.  


Believe it or not, this list used to be longer!  Since starting the Prograf again, I'm incredibly thirsty too.  My drink is never far from my reach and I will mow you down if you come between me and it.  Things could get ugly.  But hey, it's better than death.

Fitness and Cancer

By David Haas (Introductory Guest Blog Appearance)


It stands to reason that someone who has been recently diagnosed any kind of cancer including common cancers such as breast cancer and skin cancer and even rare cancers like mesothelioma wouldn't want to spend a lot of time exercising. The shock of having been diagnosed with an often fatal disease combined with the sickness, pain and fatigue associated with said disease can all but destroy any motivation that one would have for remaining or becoming physically fit. Physical fitness is important for everybody, even those who are suffering from cancer. Recent studies have found that while a regular exercise regimen is by no means a miracle mesothelioma treatment or a cure for any other kind of cancer, it has helped aid the recovery and improved the prognosis of many cancer patients.

Two of the most common and debilitating side effects of most traditional cancer treatments are fatigue and loss of muscle strength. Cancer treatments such as chemotherapy tend to make patients feel very fatigued, so naturally they do not want to spend a lot of time doing much of anything, let alone engage in any kind of exercise. The muscle weakness commonly experienced by cancer patients naturally results from this fatigue. As they are deprived of exercise, these patients also miss out on some of the benefits that come from being physically fit including improved sleep patterns, increased energy, decreased depression and a generally improved sense of wellbeing. In other words, exercise can help a cancer patient or cancer survivor get his or her life back.

One form of exercise that many experts suggest for cancer patients is lightweight training. It's already been established that many cancer treatments cause a weakness in the muscles, so a weight-training program has proven to be very beneficial for many patients undergoing chemotherapy or similar treatments. It is not recommended that anyone who is experiencing fatigue or muscle weakness attempt any rigorous weight training exercises, but there are plenty of light exercises that can be done that will still help to build lean muscle mass and improve the overall fitness of cancer survivors.

The American Cancer Society has become so convinced by the benefits of exercise for cancer patients that they have implemented moderate exercise programs for patients who have been newly diagnosed with cancer. These exercise programs can technically be considered palliative therapy, which means that while they will not cure or treat the cancer directly they will at least improve the symptoms of the disease or treatment.

The Sucknazone

That's what I'm calling Prednisone for now.  I keep forgetting that steroids are the gift that keeps giving.  It's maddening how this one drug plays a crucial role in the healing process, as well as the inhibiting process.  While it's staving off my GVHD, it's destroying a variety of other things.  I was informed about a week ago that I'll be needing cataract surgery on my left eye, with my right eye soon to follow.  My vision has been incredibly hazy lately and even blurry on some days.  The details with that are still being worked out. 


My blood pressure has been really high lately too, which my doctors have also attributed to the steroid dose.  Based on what those readings were in the last week, I suspect I'll be on blood pressure medication soon.


My oncologist at the University of Chicago has decided to add another immune suppressant drug to the already extensive regimen.  I'm going back on Prograf in the next week, in addition to Sacrolimus.  Prograf we suspected, was largely responsible for my neuropathy problems in 2009 and part of 2010.  But we're hoping that won't be the case this time around.  If it prevents me from drawing or playing guitar again, that might be bad.  So, by this time next week, I'll be on 3 different immune suppressants:  Prednisone, Prograf and Sacrolimus.  Now, where did I put that hand sanitizer?  


As of right now, there's not really an end in sight to stopping the steroids.  But I'll keep hoping.  I am getting tired of hearing the response 'It's from the steroids.'  Ugh.  These drugs are just reeking havoc on my system.  First, my eyesight went, and keeps changing.  Then I developed Osteoporosis.  My cholesterol is whacked and now I've got high blood pressure.  Awesome.  I'm actually in better spirits than I'm appearing...really.  They should just list the side effects that come with steroids as 'Please see your nearest Encyclopedia...then pitch a tent.'  Or, see the Jedi Archives and then go into cryo-sleep.  Seriously.  Why is the grass green?  Steroids.  Where did that lightning come from?  Steroids.  I'm telling you...this is what killed the dinosaurs.    


Stay out of the Sucknazone.  Trust me.           

Stoney Vaccinations

You just never know sometimes what your doctors have in store for you when you go to their office for an appointment.  The nurse comes out of the armory, calls your name, battle ax in hand...sound familiar?  No, not really.  I always get a kick out of my conversations with these people.  


Nurse:  "Jonathon?"
Me:  "Yep."


I stand up and follow her back to the armory.  Her ax still has blood on it, I swear.  She was fighting dragons today.  With Matthew McConaughey.  London is gone right now.  I can see the flames from my chopper.   

Me:  "How are you today?"
Nurse:  "Oh, better than you!"  (Not a good sign when they say that, I've discovered.  Never.)


Me:  "Uh-oh...why's that?"
Nurse:  "Cause you're about to get 5 shots."  


Oh goody.  Bring on the pokage.  5 shots.  Measles, Mumps, Polio, something, and something.  My mind trailed off after Polio.  I was focused on the fact that my arms would soon like a buckshot target.  


By the time I get home from there, I'm actually a little stoned.  I think the drugs were taking effect, but thankfully not whilst I was driving.  I do remember texting my wife something about 'being a pepper too.'  Who knows.  I can't be held responsible for what may or may not have occurred while I was under the influence of too many vaccinations.  My phone will remember.  Someday, I just might have to put something together that encompasses everything I've said unaware while undergoing treatment with these drugs.    
Drugs are devilry I tell you.  Just devilry.  But they make for great entertainment.

Thank You Steroids and Have a Nice Day...

The ramifications from being treated after having cancer just keep getting more complicated.  This week, a number of things happened, leading up to more drug changes.  For those who don't know or are just tuning in, I'm still battling issues with GVHD.  (Graft vs Host Disease.)  My skin is still very tight, and discolored.  The muscles throughout my body still lack normal flexibility, and my breathing is far from normal.  All these symptoms are being kept at bay by the use of Prednisone.  (Steroid.)  Prolonged use of this drug has proven the reason why long term use is bad.  In addition to finding out I have a cataract on one of my eyes, I found out this week that I have Osteoporosis, as a result of long term use of the steroid.  I'll get back to that in a minute.  

I met with my Oncologist in Chicago this past week and as a group, we decided that Gleevec might have been helping a little with my GVHD symptoms,  but it's definitely not helping enough.  We decided to stop the Gleevec and try a new drug called Sirolimus.  Apparently it's a pill similar to Prograf, in that it's a immune suppressive drug that may help 'calm down' my problems with GVHD.  Trying out Sirolimus is for right now, a better solution for the short term to see if it makes a big enough difference in the next few months.  If this doesn't work, or help enough, we'll most likely have to resort to a program called ECP.  I am to remain on the steroid dose for now.

ECP is a treatment of the blood where they basically draw a certain amount of blood, filter out the bad cells in it and then transfuse the blood back into my body.  This process would have to be done in Chicago, 2-3 times per week at 6 hours per session.  To put it lightly, I'm not interested in doing in that, and will consider it a last resort.  Especially, since I haven't heard of anyone who has had success with doing that.

I'll be starting a new drug soon for the Osteoporosis, and I'll find out what that drug is today with my local doctor.  The goal with that is to prevent it from getting worse than it already is.  

I'm frustrated with all this.  And I'll tell you why.  It just seems like we're throwing ideas around in a hat, tossing them up in the air and picking out one that looks good.  This is not the Goblet of Fire.  The very drugs I keep using for treatment, are the same ones that are making matters worse.  I guess I'm having trouble seeing the 'greater good' through all this.  I can honestly say I've never heard of anyone dying from GVHD.  It's just a big annoyance.  I have to believe that things will normalize in time.  The goal is get off all the drugs, not add more that are just going to cause more problems.  But I'm going to do what I'll always do and listen to my doctors, even when I don't like it.  

More coming soon.  

Gleevec is Helping

Little victories are triumphant victories for cancer patients.  War-like victories.  When you've looked the evilest devil in the eye and you walk away still standing saying, next, it's going to bring anyone joy.   


You know you're getting better when your doctor comes into the room and the first thing he starts talking about is college basketball, and how that relates to me because of where I work.  I'm not a basketball fan as a general rule, but when the focus of my health is now in the backdrop of our business together, that rocks.  I'm still the subject of his primary focus of course, but it makes me feel good when he sort of means, we have some issues to go over, but let's talk about this first, as in, how 'bout them Irish.  I like that.  Even if I'm not that interested.  It means things are good.  Hell, things are goodfull.  Is that a word?  I'll make it one.  I'm contacting dictionary.com right now.


Since the start of my use of the drug Gleevec, we've come to the conclusion that it is in fact helping with my GVHD.  My skin is loosening, I'm a little more flexible, my eyes have brightened, and my skin is not nearly as dry.  It's been 2 months since I started it and it's been a very slow progression, but the evidence is there, without any hampering side-effects.  In addition, we have hopes that I can start tapering off from the steroid this Summer.  We don't want to be too presumptuous on that yet, but it's a possibility.  


All is right in Jonathon's world today.   

Virtual Meetings

In the last few years, I've met some pretty amazing people, just from having a few blogs and being a part of the fast-growing social monster known as Facebook. I like to write. A lot. It's even got me in trouble a few times. So, when I got sick, writing was one of the few things I could still do. I could hide behind my laptop screen, write what I wanted, with the intention of maybe helping someone else in the same situation. It was a way for me to present my experiences from a patient's point of view, rather than what people would search for on WebMD, Google, or what ever outlet they chose. It was also a broader way to inform friends and family about day to day progressions. Or setbacks even. It was a common ground. A social, virtual water cooler.

So, who have I met? People from all over the world and in our country. Some of whom, I have not yet met in person, but are planning to in one way or another. I've met some great people more locally too, like Damon and his family in Chicago. They came to see me several times, in the hospital and here. And we've been with them through a few football games. I talked with someone recently from New Jersey through email just the other day. I met Bob at Holy Cross College while in the thick of treatment. There's also fellow blogger Daniel and his family, who live in Romania. Great people. I've also talked with Alison and Kathleen who are both from South Africa. And I'm not even listing them all! It's amazing what hiding behind your computer sometimes will do for your virtual interactions when you're faced with a common enemy. What do they say, the enemy of my enemy is my friend?

With that said, I couldn't have predicted who I would wind up meeting and what I would end up learning as a result of this blog and Facebook. Still mystifies me sometimes. In a good way.

Gleevec Part II

I win.

As it turns out, the medical team at the University of Chicago was able to appeal my insurance's original decision to deny coverage for Gleevec. Scroll down to see the backstory in my original post about this. After convincing them that this could possibly have some success in treating GVHD, they decided to give us the go-ahead, which is great news because this drug is very expensive and not even available at certain pharmacies. It has to be mail ordered, which I'm not thrilled about...but we'll give it a fair shake. Something about being able to talk to a pharmacist when you want to know more about side effects seems a lot more personal than a getting a bag full of drugs in a mailbox. You need SS numbers, addresses, ID numbers, and the names of your first born children to hand over before anyone will prescribe you any drug....but we're okay with it sitting in a mailbox for hours till I get it? Mm-k. And they say I'm goofy.

In any case, Gleevec has been approved, and we're waiting for it to arrive. All is right in our world today, thanks to the efforts of UCH. Great job to Dr. Artz, Linda and Lisa! You guys rock.

My wife is still doing the Snoopy Happy Dance.

Gleevec

In the last year, researchers and trial participants of treatment for Leukemia have discovered something that might help in battling GVHD over time. (Graft vs Host Disease). In the event of a person having a bone marrow transplant, like myself, their new stem cells can often times wage war against what's left of your old immune system, causing all sorts of problems. To this day, it's why I remain on Prednisone (steroid) to suppress those problems. (i.e., skin tightness, energy levels, flexibility, eye problems, etc).

During treatment for Leukemia, a person having the Philadelphia chromosome would have a drug called Gleevec added to their regimen. I did not have the chromosome, so I was never prescribed the drug. But in their research, trials have found that in addition to helping treat Leukemia, the drug also helps combat GVHD. As a result, my doctors want me try it and see how things go. In the last few weeks, also under the direction of my doctors, I have stopped taking Prograf. (Another immune suppressing drug.)

The downside is that the drug is incredibly expensive. (Around $4000USD for a 3 month supply). We're battling it out with our insurance now to get it approved, but so far it hasn't been a fruitful effort. They don't want to cover it because I don't have the chromosome and it's not considered a standard treatment for GVHD.

More to come as we find out more.

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

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.            

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.  

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?  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.   

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