Hey Folks,
Well yesterday was Father's Day and I had a great one.  Did some chores around the house, got two great presents from Sarah and Sean and had a wonderful conversation with each of them.  I stopped by the office for a while then watched some golf before going to visit our very close friends Linda and Phil.  We rented the little cottage adjacent to their farm house for a couple of years before moving back to our house on Riverchase Trail.  Linda and Phil have a beautiful property that includes a bold, clear trout stream called Pine Orchard Creek that runs right through their back yard.  There is an old locus board bridge the spans the creek.  Linda and Phil  use the bridge as a gathering place to sit and watch the world go round.  It is a wonderful experience to listen to the water tumble down the creek in the shade of a big Sycamore Tree as the sun goes slips into the western horizon.  Of course a glass of wine just makes the vibe that much better :-)

Left to Right: Casey, Phil, Linda and Jack.  That's Helen's wine glass in the foreground and the creek behind us.
Sunset on the Bridge.

Naturally on Father's Day I think of my Dad Gerard Rielly.  He was one hell of a guy and of course I miss him.  So many things he said have stayed with me.  One of his favorite expressions was "Don't worry, the worse that could happen is you could die".  By that he meant to point out that it is silly to worry about things that are inevitable.  When I told my friends Jim and Walt about my diagnosis I said to them "it's not news" meaning that we will all end this journey on earth one day so why get uptight about a diagnosis that may (or may not :-) lead to something that is going to happen anyway.  Thanks Dad, for helping me to understand that what counts is enjoying the journey and being happy while it lasts.  After all, the worse that could happen is I could die.  Blessings and glad tidings to all Dads out there.
J

Friends,

I think that most of you that follow this blog know about the place where we live but for those of you who do not here is a little bit about our town.  Around here we say "Todd is not a zip code, it is a state of mind".  Todd is a tiny community tucked into a bend in the South Fork of the New River.  The river's name is misleading as it is reputed to be one of the oldest rivers in the world.  There is not "town" of Todd either incorporated or unincorporated.  It is just a geographic area delineated by the boundaries of our little post office.  It is endlessly beautiful with amazing mountain and riverscapes which are breathtaking in all four seasons.  But it is the people who live and visit here that really makes Todd a "state of mind".  An eclectic group of eccentric, wonderful, amazingly diverse and kind folk have found their way here.  As I have said before - if I were driving down Railroad Grade Road and saw the Delai Lama fly fishing in the New River with a raccoon on his head I wouldn't be surprised, I'd just say "that's Todd".

Here's a Todd story for you.  I recently severed a tendon in my left index finger which may well have ended my days as a guitarist (which I thought was the ultimate bummer until I got the news about you know what).  Anyway, I keep a bunch of instruments around the Mercantile including a guitar in case visitors want to do a little pickin'.  A guest was in the bakery and asked about the guitar.  Helen told him that it belonged to her husband and that he was depressed about not being able to play because of an injury.  He told Helen that he knew how I felt because he had arthritis and asked for my name and number.  The next day I get a call from him inquiring about what I was up to the next day at 10am.  I told him that I did not have plans and he said that he would see me then - mind you , I had never met this guy before.  Anyway, in he comes to my office at 10 the next morning with two guitar cases in hand.  It turns out that they were Dobros which don't require left hand finger dexterity as they are played with a "steel" that slides up and down the strings.  We sat down and he showed me how it worked, listened to me fumble around for a few minutes then said "you'll do fine, just keep that dobro as long as you want".   This kind kind man, someone I had never met before, has put music back in my life.  That is the kind of thing that happens here in Todd.

Helen's bakery and store are located in the Mercantile as is my office.  It is a 100+ year old building built mostly of American Chestnut which was abundant when the building was erected.  Todd was the southern terminus of the Virginia Creeper Railroad and was a bustling community at the time.  Lumber was the main commodity that drove the railroad.  As is typical in the boom and bust history of the Appalachian Mountains, the railroad failed after the last tree was cut and the timber dried up.  In short order the bank manager (yes there was a bank in Todd as well as two car dealerships, a hotel, a theater and, rumor has it, a house of ill repute) ran off with everyone's money and,  a few years later,  most of the town was swept down the river in the flood of 1940.  What was left is the sleepy little town you see today with a few historic buildings including the Mercantile.

Once a month the Mercantile plays host to a Contra Dance which is a kind of square dance with a caller and a live band playing old time music on fiddle, banjo, guitar and base.  Last night was the latest dance and it was a ton of fun.   The band sets up right in front of my office which I think makes my office one of the coolest around.  The dance takes place in the upstairs gallery and other folk relax on the front porch or browse in Helen's bakery/store downstairs.  Here are some pictures........

Dancing in the Moonlight

Looking out from my office and, yes, that is a washtub base.

The hat rests while its owner dances.

Evening on the front porch

I hope that gives you a little taste of the place I love, so that you will know that I am very happy to be here always, no matter what the circumstances.  Stop by and visit - you'll be glad you did.

J

.

Friends,
I recently posted a photo of the family sitting on the front steps of our home in Todd.  Figuring what was good for the goose was good for the gander I made a similar photo my profile pic on Facebook.  I got many comments on that photo so I thought I would add it to my blog.

The crazy Rielly Family

I realized after I posted this photo that it is missing a very important family member.  Helen's daughter Elise was visiting us but had to leave just hours before Sean, Paige and Tanner.  So here is a photo of my wonderful step daughter Elise.

Elise is currently working on beautiful Block Island which she refers to as "my island".  If you ever get a chance to go there you will not be sorry.  Be sure to stop by the Oar Restaurant and say hello to Elise.

I have been feeling very well lately although sometimes I feel tired.  In case some of you might be worried that I am sick and in bed you should know that I am getting around just fine.  In fact, today I am playing golf with my good friend Gary from Cary.  He owns a wonderful mountain home on the North Fork of the New River.  I met him when he hired me to stain the cabin and Helen and I have been good friends of the Marchecks ever since.  Here is a photo that Helen took last time he was in town.

Ever since I was diagnosed with melanoma I have been telling Helen that I should write a book titled "The Great Thing About Having Cancer Is....." which may seem a bit crazy but really isn't.  As I have mentioned before, I have been at the receiving end of so many blessings that it just amazes me.  Not the least of these blessings are folks who have added me to their church prayer lists.  I know for certain that numerous churches representing at least four different religions have raised their voices in my behalf.  Although I am not as religious a person as some, I want everyone to know that I take their prayers very seriously and that they give me strength and confidence as a look down the road ahead.

J

Hello Folks,

Yet another rainy day in Todd.  Even the locals say it is one of the rainiest springs in memory.  I am glad I had a chance to float down the river with brothers-in-law Tony and Dan and their boys and nephew Robbie, Jacob and Nick when the visited.  No floating today with floods covering the low water bridges.

The day after my treatment at Duke was a busy one.  After checking out of Chez Wilson (thanks again Karen and Rick) we stopped for some yummy bagels at Bruegers in Chapel Hill and headed out for the mountains.

My sister Nancy had covered The Mercantile while we were away.  I have mentioned the many blessings I have received in previous blogs; how about this one?  On less than one days notice Nancy jumped in her care and drove 8 1/2 hours to Todd to help us out for a couple of days then jumped back in her car to drive 8 1/2 hours back to Indiana and her regular job.  Thank you sister!

When we got back to Todd it was time to set up for the first free Summer Concert Series in the park featuring the Kingbees, a great blues band that has played all over the world but live in Todd (as I tell everyone, Todd is not a zip code, it is a state of mind).  I helped to set up the sound system and cook the burgers that we sell.

The Kingbees on stage in Todd

 By the way, the "we" there is the Todd Community Preservation Organization aka TCPO.  The TCPO owns and maintains two parks in Todd and puts on various events like the Summer Music Series.  Helen and I are both board members of the TCPO.  You can check the TCPO out at www.toddnc.org

I was feeling pretty good the day after my treatment but paid for it on Sunday when I was totally spent.  I tried to rest as much as I could and I feel much better today and hope I will continue to do so until my next trip to Duke.

I wanted to be sure to add to this blog a little something about our government.  If you know me you know that I frequently jump on my soap box and rant about the folks running our state and federal government, and rightly so I think in many cases.   However, I must say that without the help of some wonderful people at the Wilkes Social Security Office and the Ashe County Social Services Department I would not be in my current treatment program at Duke and my heartfelt thanks go out to them.   It seems that there are some really good, hard working people in government jobs "where the rubber meets the road" - it is the morons that we elect that are the problem :-)

Treated like a Guest not a Patient

It was a rainy ride down the mountain to Chapel Hill Thursday evening.  After Helen settled my beloved sister Nancy into her new role as proprietress of The Mercantile we left Todd around six in the evening and arrived at Karen and Rick Wilson's beautiful home in Chapel Hill just after nine.  Karen and Rick are neighbors in Todd and have been so generous to us.  Their guest cabin was home to visiting family and Karen bought out the local Harris Teeter supermarket so that we would not go hungry - for that matter I think we could have fed all of Todd with the food she so kindly dropped off.  

Karen was waiting for us when we arrived and welcomed us with warm brie and wine.  Her house is amazing - even more so with her talented touch at decorating.  The long drive made us poor company and the schedule at Duke required and early wake up so it was not long before we were off to bed.

It was raining buckets in the morning as we headed north on 15/501 to Durham (a metropolis known as the "City of Medicine").  The deluge made the Valet Parking (I'm not kidding) tempting but I told Helen that I'm not that far gone yet, so we headed to the parking structure and a warm welcome from a greeter stationed at the parking ticket gate.  A covered concourse kept us dry as we headed to the Cancer Center.  The medical facilities at Duke are HUGE but great signage made it easy to navigate through the Duke Clinic to the Cancer Center.  The Cancer Center itself was just completed in 2012.  The architecture is beautiful with bright natural light (yes, even when it is raining) and amazing curved wood accents.  Think of the best five star hotel you have ever been in and you will get the idea.  And I think that that was the idea of the whole center - to make you feel special, like a guest at a resort, which is a very nice state of mind to be in when you are looking cancer square in the eye.

I had three appointments scheduled that day - Lab Work, Doctor Appointment and Treatment.  Each appointment was on a different floor but only one check in was necessary because we were given a flashing pager, like you get in a busy restaurant, which we kept with us a the day progressed.  So we checked in at the Lab and waited in the comfortable lounge - I can't call that nice an area a waiting room - until the pager went off and it was time to meet the Lab Tech.  I did not receive any special dietary instructions but my experience with blood tests always included a admonition that I was not to let anything pass my lips after midnight so I had missed out on the yummy muffins that the ever generous Karen had left out for us.  After I asked about eating before giving blood the Lab Tech naturally told me that I could have eaten anything I wanted to.  So after the "sticking" and letting of blood we stopped at the clinic cafe for some Starbucks and scones before heading to the third floor to meet my oncologist Dr. Hanks.

Let me say here that I have met specialists at Duke before when I lived in Chapel Hill and, suffice it to say, I was so impressed that I never went back.  Nothing could be more different than my meeting (for the second time) with Dr. Hanks.  May all of you never, ever need an oncologist for melanoma but if, god forbid, you do, you will never find a more solid, down to earth, look you straight in the eye doctor who makes you feel like you are the most important person in the room.  He explained the treatment plan to Helen and I and was ready willing and able to answer any and all questions that we had in a most relaxed way.  What a great guy and, as Helen can attest, he is easy on the eye.  Condensing all that was said down to a sentence, I will be treated four times three weeks apart with an infusion of Yervoy with the most common side effects being diarrhea and rash with rare side effects ranging from bad to awful.  Helen and I both feel extremely comfortable in the care of Dr. Hanks.

So upstairs we went to the treatment area and another lounge where we waited for our pager to light up and do its vibrating dance.  After the dance commenced we met Nurse Melissa who escorted us to a comfortable room with cushioned recliners (mine was bigger because I'm "special"), a flat screen TV and a gadget with two bags hanging from the top.  You can see me looking at the bags in one of the pictures that Helen was good enough to post.  I am reading the orange sticker on one that says "Caution! Hazardous Drug" - how comforting.  Melissa explained that the infusion would take about 90 minutes and would be followed by a "flush" which would take just a few minutes more.  After she settled us in with a warm blanket (I told you, five star hotel) she got me hooked up in a most expert fashion.  A little while later she had some paperwork to review about side effects and how to contact the Cancer Center if any should present.  She also gave us some paperwork that looked like it was prepared by the drug company's attorneys that mentioned things like death being a possible side effect at which point I decided not to read on.  It really did say that but please do not be worried.  Yervoy is a very gentle but potent treatment especially compared to chemo.  The pharmacist also visited to further explain the drug and how it worked.  One of the interesting things that we talked about is how the over the counter sleep aid that Helen and I sometimes take may be exasperating her restless leg syndrome which can keep her awake!  After a very relaxing couple of hours watching the bag collapse Melissa came back and unhooked me from the I-V pump and we were good to go.

It may seem strange but our first stop after the treatment was Dickie's Barbecue where we enjoyed some excellent pork barbecue with all the trimmings.  We were both pretty hungry by that point and the food tasted wonderful.  We went back to the Wilson residence where I enjoyed a nice nap then went for dinner in a little Italian restaurant in Southern Village where I used to live.  Helen and I have been so busy dealing with the nuts and bolts of getting treatment that we have not had a lot of time to really talk about my cancer and what that may mean.  We had that chance while eating at the bar in this bistro and it was good to get it all aired out.  Such a subject has to lead to a few tears every now and then and Helen was wiping her eyes when we realized that folks in the restaurant were probably figuring me for the cad that dumps his partner in a public place.  This of course got us laughing at the irony of it all and I am sure totally confused our onlookers.  

We are back in beautiful Todd now with one treatment under our belts and three more to go.  I feel fine and even better than fine knowing that I am in treatment with some kind of chance of overcoming this disease.  Dr. Hanks explained that the onset of side effects was cumulative so that the more treatments the more chance of them occurring so I expect that I will have a fairly easy time of it for now.  

Thanks to all of you for your prayers, love and generosity.  I am surrounded and lifted up by the blessings that you all have bestowed on me.  

J 

 

 

  

  

  

            

Day 1 fighting back... Enthused to be infused

Photo 1 getting blood work, photo 2 check-up with Dr. Hanks, 3 - warm blankets, 4-5 checking out the drugs, 6- getting infused, nothing like some good ole Carolina BarBQue to wrap things up (followed by a nice long nap) :-)

The kids, grandkids and grandma (aka Gigi) all came to visit and offer their wonderful support.  In the back row left to right is me (with our dog Cody on my lap),  my daughter-in-law Paige (who drove 14 hours while 8 months pregnant just to visit!!), my children's terrific mom Lori.  Middle row, Sarah, Sean and my priceless wife Helen.  Front row, Sarah's eldest Caroline, Sarah's second Ella Grace and Sean and Paige's cutiepie Tanner.  How happy we were to all be together!!!

Dear Friends and Family,
Helen and I are about to pack our bags and head "down the mountain" to Chapel Hill where we will spend the night at our good friends Rick and Karen Wilson's house.  Tomorrow we will be at the Duke Cancer Center where I will start my treatment as Helen outlined in the previous post.
So all of you might know, here is how I discovered my disease.  At the end of April I had a pain under my right shoulder blade.  It was enough of a bother that I decided to go to the Urgent Care in Boone the following day.  Thinking it might be heart related they did an EKG which was normal.  They then did a chest x-ray which showed a nodule on my right lung.  They said that I would need a CAT scan and referred me to a surgeon in Boone.  Things did not work out with the Boone doctor so my brother-in-law Dr. Tony Barnes very generously offered to have it done in his office in Kentucky.  So Helen and I went off to Kentucky where we had a great visit with Tony, Lisa and the kids.  The next day the CAT scan was done and it fell on Tony to let me know that I had tumors not only on my lung but on my liver, spleen and adrenal gland as well.   Tony recommended that I get a PET scan and a CAT guided needle biopsy and arranged for that to happen in Kentucky the following week.  So Helen and I went back to Todd and came back the next week.  The PET scan showed that the tumors were likely malignant and that was confirmed when the pathology report came back on the needle biopsy.
So that is the story of how a little pain in the shoulder turned out to be Melanoma.  Ironically, the pain went away after two days and if I had just waited I would still be in the dark about the cancer inside of me.  Friends have asked about the "spot" knowing that melanoma always arises from a small skin lesion.  Well my oncologist at Duke gave me a pretty thorough going over and could not find it.  He said that the lesion could be in my mouth or eyes (I was looked over by an Ophthalmologist) or even in my GI tract.  Ever since my diagnosis Helen has been inspecting me for the telltale spot.  She thought she had it nailed down when she spied a weird looking little area on my bum and insisted on taking a picture I could send to Duke.  I realize that this is not for the weak of stomach but following is the famed "spot on my bum" which Dr. Hanks assured me is not a primary melanoma lesion.

In parting I want you all to know that I feel overwhelmed with blessings.  All of you have been so kind, concerned and generous.  You have made a happy man even happier :-)  
J

PS- I am an amateur when it comes to blogging but I believe that if you enter your email above you will get an email notice whenever there is a new post.

Thank you all for the well wishes and most importantly the prayers and positive thoughts!  

I want to update you all on what has been and is going to happen now.  The important news is that Jack will be starting treatment THIS Friday at Duke!  He''ll have blood work done at 8:30am, then he meets with his oncologist for an hour followed by his first dose of Vervoy  a.k.a. Ippy.  This treatment is much like chemo in that he'll get a dose which will take about 3 hours (however it is not chemo... it is a type of cancer drug that works by unleashing the body's own immune system to fight a tumor.)  After getting the infusion he goes home for 3 weeks, then back for another dose... for a total of 4 doses in 12 weeks.  When he'll get reevaluated to see if it is working to fight the tumors.

If it isn't working he may qualify for a clinical trial for a new drug PD-1

Jack has demonstrated his tenacity for this journey we've been put upon, by qualifying for social security disability and getting on medicaid in record time (that according to all who manage the system). 

Right now he feels great although he says he is starting to feel it in his lungs.  And he looks GREAT!

We are hoping to start blogging updates on his treatment and how everything is going so everyone can keep up if they want.  You will be able to sign up for RSS feeds which will tell you when a new post has been added.  In his own quirky sense of humor Jack named the blog "what's eating Jack"  - I guess it is somewhat accurate.

here is the web address  http://whatseatingjack.blogspot.com/  

for the less internet savvy - you can also bookmark the address and that will keep the address for you so you don't have to look it up every time ;0)  

Peace, Love and Hoping for a cure

Helen

For some reading pleasure

NY Times article on Vervoy getting approved by the FDA  http://www.nytimes.com/2011/03/26/business/26drug.html

PD-1 Wikipedia http://en.wikipedia.org/wiki/Programmed_cell_death_1

National Center for Biotechnology on PD-1 http://www.ncbi.nlm.nih.gov/pubmed/18173375

Another patient's blog on PD-1 http://www.philly.com/philly/blogs/patient1/Patient-1-Is-PD-1-the-answer.html