Monday, June 25, 2012

Here is a quick video from our trip to Pittsburgh;

Saturday, June 16, 2012

Shake Up The Rug From Underneath Your Feet

Sometimes it seems as if we can't catch a break.  Other times it feels as if we are in the movie Groundhog Day and wake up and re-live the same day over and over, quietly pressing down our desires, passions, and thoughts.  You can get lost in it, over your head in it until you have forgotten what it was like to have focus, to be truly alive.  We are all guilty of it.  The human brain is amorous towards patterns and low resistance.
But we all have desires and passions.  And in moments of true inspiration we connect with those attitudes.  We become focused and move towards a goal that we want for ourselves or our world.  This though, is temporary for most.  It lasts if not only for a moment, only for a short time before being flooded by the brains affinity for the easy.  As efficient and wonderful as it is, the brain is a product of evolution, survival of the fittest.
So how do we gain this focus and keep it?  How do we stay pointed towards what is important, what gives us awe?  And how do we keep it fresh?  How do we keep it from becoming old hat?
The title of this blog was taken from a video I saw by a guy named Jason Silva.  You can google him and find out more about him, but in the video he uses the phrase "Shake up the rug from underneath your feet."  "Disruption makes things new again."
Yesterday, I was working the evening shift.  I had just come back from dinner and was getting ready to begin the second half of my day.  All of a sudden, it started to thunderstorm.  A thick downpour of rain coated the air.  I parked in the parking lot and sat for a minute.  I had a decision to make.  Sit in my truck and watch the lot through the storm?  Drive the boundaries?  I had plenty of indoor projects I could have worked on.  I had already had a rough day, so why not take the dry/easy route and stay in the truck or inside?  Do what anyone else would have done.
But then I remembered that phrase "Shake up the rug from underneath your feet."  I had the opportunity to do something exhilarating.  Something that could help change my focus, give me a sense of awe.  Something that would disrupt my thoughts of low resistance and self constructed patterns and would make me feel alive again.
So I jumped out of the truck, threw on my pack, put my jacket over my pack, and started off.  The rain was thick and heavy, soaking my clothes through almost instantly.  I could feel the water dripping down into my boots after only a few steps.  I had to keep my head tilted down just a smidge to allow the water to drain off of my eye brows and not into my eyes.  It was loud.  It sounded like an orchestrated applause from thousands of people.  The lightning would startle you, even though you knew it was coming.  The thunder was deep, and rumbled through the hills as you could feel it move through your chest.  I stood on the shore of the lake for a while.  The air had been hot earlier in the day.   The wind accompanying the storm made for a welcomed chill.
I hike the trails every day I am at work.  I see the same trees, same animals, same plants and rocks.  But in this storm they were different.  The forest was a different creature all together.  I was immediately inspired.  My brain began to have focus.  I began to feel euphoric and awestruck.  Along with the storm, I had been the architect of my own happiness.  I had made a simple decision to disrupt my normal patterns and walk in the rain.  I felt new again after so many months of feeling broken.
Like a wave, the clutter was washed out, and a clean, new canvas was left.

Thursday, June 07, 2012

A Little Less Hazy

   There was a haze over the city when I got up early this morning and peeked through the curtains of the hotel room.  I was up just after sunrise because, A) I couldn't sleep and B) I knew I had an important appointment that I had to make sure the family and me were awake and prepared for.
   We had driven up to Pittsburgh, PA from Nashville, TN to visit a doctor that specializes in pseudomyxoma peritonei treatment.  He is one of the top dogs in a dog pen of only 17 or so special dogs in the country.  We had decided to make a small vacation out of it since we were not going to get much in the way of a vacation this year due to me taking so much time off for my surgeries.  And, in pure Jenkins' fashion, we have made a pure adventure of the trip.
   But this morning was a different feeling.  It was really something which I had been waiting for since we found out about all this stuff going on.  I didn't necessarily think that we would have any definitive diagnosis just by traveling up here.  What I did know though, and Kari had agreed, was that we would have spoken to the best doc we could about the situation, and that in and of itself would be worth the trip. In the back of my mind, I knew what Dr. Bartlett (the specialist) was going to say.  But I kept an open mind, and proceeded with my morning with an air of excitement that we could possibly have some answers after our appointment.
   Kari and Wren and I were walking up to the Hillman Cancer Center at UPMC a full 30 minutes before the appointment.  (My Mom had driven up from Virginia, and she took care of River in our hotel room during the appointment.)  When we got there we were greeted at the main entrance, given a welcome packet of information, and given a tour of the patient library.  Then a welcome employee took us upstairs to the office we would be seeing Dr. Bartlett in.  After a few signatures and a set of vitals, we were put in an unassuming exam room.  Only after a minute or so, we were visited by a nurse that I had spoken on the phone with previously.  She just wanted to stop in, check on me and see if we needed anything.  She also said she had sat in on their morning meeting as they went over my case.  Then Dr. Bartlett's P.A., Heather, came in the room and went over our case with us to make sure they had all the details down, and then did an exam.  She stepped out and then after another minute stepped back in with Dr. Bartlett.
   Dr. Bartlett, an unassuming, quiet spoken, middle aged guy, with a friendly but dare I say "doctorish" disposition sat down in the chair in front of me.  He began to explain the process of pseudomyxoma peritonei to us.  I had read much of what he said already in research articles, but later Kari would tell me that what he said was very informative and helped her make some sense of the disease.  He told me that there was truly no way of knowing whether or not I would eventually get pseudomyxoma.  He said that some people get it and that others get lucky and don't.  The only way of knowing was to continue a watch and wait process, by getting MRI scans every 6 months for two years, and then every year, for 10 years.  If, after 10 years, the scans are clear, then I can stop getting scans because even if I did have the disease it would be so slow growing that I would not have to deal with it in my lifetime.  If, sometime in that 10 years the disease shows up on a scan, then they would go in, do a cytoreductive surgery along with a Heated Introperitoneal Chemotherapy treatment, and hopefully that should be enough to take care of the disease.  Pretty straight forward.  He also wrote a prescription for tumor marker tests along with the MRI scans to check for any change in that field.
   I knew, through all of my research, that this was what he was going to say.  And for the first hour or so, I was sort of in a funk, only because secretly I had hoped that we were going to get a much clearer answer that would break through this wall of unknown that we were bumping into the last few months.  But after some thought and talking it through with Kari, I knew that the advice from Dr. Bartlett was just what the doctor ordered.  It was a definitive, confident answer to the direction we should go from here.  It wasn't a "well, I think this should be fine", or a "I don't normally do this, but since you are asking I'll order these scans for you" type of answer.  It was a "we want you to do this" and that was it.
   We are still swimming the sea of the unknown with this stuff.  But I tell you, after today, the shoreline is a little less far off.  The haze has begun to burn off and we are pointed in the right direction confidently for a change.

   Tomorrow we are leaving Pittsburgh and headed back to Nashville.  It will feel good to get back into the swing of things and have a direction, a set plan, a plotted course.  And while us Jenkins' are never free  from change and life's craziness, it will feel more like an adventure again, instead of a ship lost without a sail.

Kari insisted upon taking a photo of me with the Doc and the P.A. because they were part of our vacation.

“Only those are fit to live who do not fear to die; and none are fit to die who have shrunk from the joy of life and the duty of life. Both life and death are parts of the same Great Adventure.”  Theodore Roosevelt

Monday, June 04, 2012

Adventure, Day 1

We made it to Cincinnati tonight. How a 4 hour trip gets turned into 7, one might never know, but we are here and all laying in nice cushy hotel beds.
Tomorrow holds Pittsburgh in its grasp.

The Mecca Awaits

A pilgrimage to one's mecca is the high note of any devout man's life story. The one I and my family are about to partake on... Well... Not so much. But, to Mecca we will go (Pittsburgh), and we will suck every bit of adventure out of it that we can.

In a couple of days we will be leaving to head to Pittsburgh, PA to meet with a cancer specialist in pseudomyxoma peritonei. He is one of the top dogs when it comes to this rare disease. And while this may seem like the opportunity to have a bummer of a trip, we are going to make it a Jenkins Adventure like we do with everything else.
Because we are driving, it is going to take two days to get there and back. With two little kiddos, it's hard to be in a hurry to get anywhere. We are going to stay two days in the Burgh, one for visiting family and the other is held for the Doc.
We are going to make sure that we squeeze in some time to see the city and get some pictures in front of the Steelers stadium, for that is why I call Pittsburgh the Mecca. We are die-hard Steelers fans!
Hopefully we get some good news along the way and get home safe, refreshed, and ready for the next season in our lives.

Thursday, May 10, 2012

You Have to be This Tall to Ride

The last few months have been an emotional roller coaster. Up and down, up and down. I guess I shouldn't have had all that cotton candy before getting on. Now I'm a little queezy. Here is an update from the last few weeks;
Relief: After our appointment with the rare cancer doc at Vanderbilt, we felt a sense of relief. It was so good to speak with someone in person who spoke the language of this cancer. Up until that point, the doctors we had met with in person didn't know much about PMP, and what they did know, if anything, was old information that was not up to date with the latest knowledge on the disease.
Sinking Feeling: In that meeting, when the oncologist shook my hand and said "looks like we're going to be best friends for the rest of your life", I couldn't help but to give an audible "ugh...".
Confusion: I cannot express to you the amount of confusion I have felt throughout this whole process. Sometime after my meeting with the rare cancer doc here in town, I got a call from the specialist in Pittsburgh asking me to get a CT scan as soon as possible and send it to them. They already had my pathology slides, but wouldn't give me any information regarding what they found or did not find. Was this routine? Did they find something in my path slides? Why the push to get a CT right now?
Anger: A few days later I was able to get in and see my family doctor. He would have to schedule the CT scan for me so that insurance would approve it. As I sat there and described to him the events of the last few months he feverishly typed it all into his laptop. Then, upon finishing, and taking a few minutes to look up some information, he leaned back in his chair and said "sh*t, that surgeon really screwed up didn't he?!" After his decidedly caustic comment he went ahead and scheduled a CT scan.
At the CT scan later that same day, the radiologist working with me was discussing the entire ordeal with me. When I told her what had happened to start this cascade of events, she asked who the haphazard surgeon was. It just so happened that she worked with the negligent surgeon for most of her career as a nurse at the hospital. When she heard his name, she gave me a look as if to say "it's not surprising this happened." She asked if he was going to pay for all of the tests and possible treatment. I told her we were still trying to figure things out. These were her words; "well, I'm not a litigious person, but if it were me, I'd sue his pants off."
Needless to say I have felt some array of the feelings associated with anger recently.
Joy: The day after my CT scan, I had a follow up appointment with the surgeon who finished my hemicolectomy. I was quite giddy before the meeting because I knew I would be cleared to lift and eat normal and return to a more regular state of being. Sure enough he did, and I was slightly celebratory in the exam room.
Fear: Then, after announcing my transfer to a state of eating and working Pre-surgery, he pulled up my CT scan from the day before. He quietly scrolled through it, and then hovered over a section. He pointed at it and said "this is what the specialists will be looking at." The floor dropped out from under me. He showed me a spot of medium gray material in a sea of gray. He said that the spot is what mucin looks like on a CT scan, but that it could also just be inflammation.
Kari and I left the appointment in some sort of shock. Left hanging, wondering whether that light gray blob was the mucus we do not want, or simply inflammation. My gut (no pun intended) tells me that it is simply inflammation. That afternoon I mailed my scans to the specialist in Pittsburgh. Later that evening, I received an email from the specialist asking me to make an appointment to come in to their office to meet with them.
Anticipation: Yesterday I called and made an appointment with Dr David Bartlett at UPMC in the Hillman Cancer Center in Pittsburgh. Kari, the boys, and I will be traveling up there. We have decided to turn it into a little road trip, and have some fun with it. I am guessing and hoping that the visit will simply be a consult. A "you are now my patient and I can now officially review your records" type of visit. It will cost some money to make the trip, but Kari and I decided that even if it turns out to be a 10 minute, shake hands, and get your insurance information, visit, it will be worth it to know that one of the top doctors in this type of cancer is on our side and screening my records for any sign of this nasty stuff.
The loop de loop: On any good roller coaster, there is a big final loop to throw your stomach in knots and empty your pockets of any loose change you might have after spending your family fortune on a hot dog and soda from the snack bar.
This experience has been no different. Kari and I sat on the couch after the boys were asleep and talked. I tried to describe all the emotions I was feeling. Emotions towards a negligent doctor who has changed the course of my health. Emotions towards a set of doctors who blew off my risk because they are only partially educated about the full extent of this disease. Emotions towards doctors who have been helpful and knowledgable about PMP and who have and continue to help me out. Feelings of judgement for being worried about a cancer that I am only at risk for and have not been truly diagnosed with yet. For people telling me to stop researching because it wasn't helping anything. For myself, for wondering if I am overreacting or worried over nothing. I could go on and on. Up and down, up and down.
I keep getting on the computer and looking at my latest CT scan. I have only the slightest idea what I am looking at. It only works to perpetuate the roller coaster. Putting both of my boys to sleep tonight. Giving River a hug and hearing him say "I love you Daddy" in his three year old voice. Getting ready to lay Wren down and seeing him give a big smile through his sleepy eyes as I place him in the crib. All of it goes into the experience of the ride.
Here's the thing about roller coasters though, and is a key point to take away from this post. The ride up to the top is always longer than the ride down to the bottom. It is slower, and gives you a time to catch your breath, check out the scenery. The ride down is always quick. It can be exhilarating, or it can make you want to scream and puke. It all depends on if you fear the drop or not. And when the ride is all over, and the train of little fiberglass carts with shoddy safety mechanisms pulls into the main station, you have ended up somewhere in the middle. Somewhere between the highs and lows. A place that lets you know you could do it all over again, but this time you would try to enjoy it more instead of locking your eyes shut and hoping you don't lose your 7 dollar hot dog...

Sunday, April 29, 2012

The Dog Days are Over...

Kari told me a story last night that was inspiring to me. We had just taken the boys out to get ice cream and were driving back home when a song came on. "The dog days are over" the song sings over and over again. It was a beautiful afternoon and we were dancing in the car making the boys laugh.
Kari asked me if I remembered her playing this song for me in the hospital. I looked at her puzzlingly. I didn't remember. The pain meds I guess kept me so sleepy that I didn't remember much. So I asked her to tell me all about it, so i can at least imagine it.
She said that while her and my Mom were waiting for me after surgery, the song came on the TV. Upon hearing it, she immediately thought the lyrics were proper for our situation, and decided to let me hear it.
The next morning, she said she came into the hospital room and played it for me. My Mom and Wren danced, my Mom teared up as she is good at doing, and Kari let me know that it is all going to be up hill from here on out. And you know, for the most part, she was right. Admittedly, there have been some tough days. We have now both had a few "cry 'em outs". I have felt rough physically some days, but those times have weaned down to an evening every now and again. We are on top of this pseudomyxoma peritonei and have a plan for monitoring the status of my insides, and for attacking it if it rears it's ugly head. Things are on the up'n'up.
To everyone who has told us they were praying, or thinking of us. To those that have came by to visit, cook us a meal, clean our house, and mow our lawn. Your actions and words have been powerful. Your kindness and love have been eye opening.

"The dog days are over,
The dog days are done."

Wednesday, April 25, 2012

A Hard Day At The Urinal

Let me just say, for a guy who is used to having a plan and used to getting things done, it is difficult to wait and watch.
Today was a tough day for me mentally. I heard back from 3 specialists in the field of pseudomyxoma peritonei. They all reviewed my records and all responded with their suggestions. I will need to have a CT scan done with contrast in the next few weeks and a tumor marker test done, both for baseline readings purposes and to look for signs of disease. Then they suggested CT scans every 6 months for 3-5 years to check for mucin buildup in my abdomen. One doctor actually requested to see me in person for a consultation as well as sending him my pathology slides from the first two surgeries.
None of the specialists said that further surgery was warranted at this time due to the fact that I just had two surgeries and that I have not been positively diagnosed with the disease yet.
Then this morning I received an email from the GI surgeon who did my hemicolectomy. I had emailed him the day before to be proactive about checking in with the rare cancer specialist here in town. He said in his reply that he didn't think all of the follow up care suggested by the specialists was warranted. He said I was not at much risk for recurrence and that he had already spoken with the cancer specialist about my case.
Ugh... Nothing like thinking deep down inside that you may be over reacting, and then having a doctor basically tell you that you are.
Strangely though, later in the morning I got an email from his office asking if I could see the rare cancer specialist on Monday early morning, before the office is actually even open? Ok?
It ended up being an emotional day. (I kept most of it balled up inside, but had a small breakdown at the urinal in the men's bathroom at the visitor center of the park I work at. Luckily there was no one else there!). I have since decided to be my own advocate. I will continue on the path the specialists have suggested. It is my health, my life, and my future. Not a doctors. I am going to take the next two days off from research and planning, and I am going to enjoy my family. But I will make sure that I am getting the care and support I need so that my family and I can have a piece of mind that we have nipped this thing in the butt.
I have some things going for me in this whole process that make sense to bring up and think about often. This has been caught very early. Of the few folks who get this, they do not have advanced warning like I do. For me, at the first sign of bad stuff, I will get surgery and care and should have a great chance at living a normal life. In reality, I may never even get the disease. There is a big difference in risk and occurrence.
Needless to say though, it is hard for someone as young and healthy as I am (well, not as young as I used to be!) to go from being in tip top shape and with fairly littles worries in life, to fearing that my life has the chance to be cut short due to the miscues of a surgeon. "Reality Check for Mr. Jenkins, isle 32 please!".
Remember that we only have one shot at this ole world, make it count. I know I sure am going to try harder than I was. And in the process, if you see a guy in a uniform tearing up in front of a urinal, he's probably just having a rough day.