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.