An Amazing 48 Hours

Hey Everybody,
After seven unexpected days in Durham including two in the hospital and five days of whole brain radiation Helen and I were overjoyed to be heading back to Todd Friday night.  Dorothy sure hit the nail on the head when she said "there's no place like home" - so true.  Helen's daughter Elise not only had managed the Mercantile while we were gone but also managed to straighten out the cabin which was in disorder from our sudden departure.  Bless you Elise.

The Ever Helpful Elise

I knew the next day was going to be a very busy one as our friends in Todd had been planning a fundraiser for us.  The expense of dealing with Cancer in the US is truly breathtaking especially if you do not have insurance.  Through my generous employers and through my own efforts when self employed, I had always maintained a healthcare policy until one of the many catch 22's in the system finally caught up with me.  I was diagnosed with prostate cancer while under a COBRA plan.  I had it treated (gland successfully removed - nothing to do with Melanoma) but when my COBRA ran out I was officially un-insurable because of a preexisting condition.  Thus after paying something like 35 years worth of premiums I was out of luck.  Health care today is a political football as the nation tries to address the daunting task of making sense of a very complicated system but I believe people on both sides of the issue are glad that this particular loop hole has now been closed.  Unfortunately it was about seven months too late for me.

Understanding the financial challenge that Helen and I faced, a group of truly remarkable folks in a truly remarkable little Appalachian community in North Carolina determined to come to our assistance and help us out by planning a Silent Auction, Concert and Fund Raiser.

 
I have tried to be self sufficient all of my life so it is not easy to have to admit that help would be appreciated.  My wonderful friends understood this and said not to worry, that they would handle everything - and that is just what they did.

Some of the Many Volunteers

Whole brain radiation has a way of putting energy in once side of you and pulling out a whole lot of energy out of the other side leaving you very fatigued.  I knew that Saturday evening was going to be a long one so I spent a lot of time resting at home while being kept company by my daughter Sarah and our wonderful little dog Cody.

We arrived at the Mercantile to find it magically transformed into a concert hall, food smorgasbord and an amazing Silent Auction.

Arriving at the Event

The rest of the evening was like a blur to me as I met and chatted with many friends and neighbors some of whom had traveled HOURS in ugly, sleety winter weather to be there.  The musicians were incredible, the food was wonderful, and the beautiful donated auction items were filling Christmas wish lists.  The evening was a total success.  The generosity of so many has eased a significant burden and will allow Helen and I to stay focused on treatment.

If you have never been to Todd, or even if you have, take a minute and enter it into Google Maps and have a look at the satellite photo.  You will see a couple of churches, a post office, an old train depot, a general store, a mercantile and the South Fork of the New River.  What you wont see is an incredible group of people who all have in common a generous caring spirit, a will to work together to help when and if they can, a true sense of community and an deep love for a little cross road in the mountains of North Carolina.

Saying thank you seems so inadequate a way to express the deep emotional thoughts that occupy a big part of my day when I think about the love and good will that has been shown to me.  I can only say that I am a happy, blessed man and that any trials that face me pale, pale in comparison to the joy and happiness that you all have placed in my heart.

J

Cancer Makes a Comeback

Howdy All,
Many things have happened since my last post not all of it good so I thought I would share a wonderful experience I had at Thanksgiving with Helen's family.  I call them Helen's family but I know that they consider me and I consider them to be family too.  Helen's eight brothers and sisters are about the nicest, most generous and loving group you will ever meet and I was very much looking forward to seeing them all as we headed out to brother Tony's home in Kentucky during our first winter storm. Once we cleared the mountains the going got smooth and we were very glad to arrive and Tony and Lisa's beautiful home.  Lisa and Tony had generously invited my sister Nancy and her husband John to join us - they live in the adjacent state of Indiana and it was wonderful to see them and reintroduce them to the Barnes family whom they had met when Helen and I were married.  It is a Barnes tradition to gather for Thanksgiving and by the next day the family was there in force.  It is not uncommon to have over 50 - all family!  The cooks in the family were all hard at work building the Thanksgiving feast.

26 Lbs. Ready for the Oven

A Small Portion of the Barnes Turkey Day Crew

Driving back to Todd from Kentucky I was looking forward to a few weeks where I could put my disease and my treatment out of my mind and get ready for the Christmas Holidays and visits from Sarah and Sean and their families - what could be better.  Unfortunately Miss C had other plans.

Because of my continuing headaches, I went down to Duke a week ago for a full body PET scan.  It was an in and out affair and we headed back to Todd for the weekend.  On Saturday I woke feeling poorly with an intense headache.  On top of that, I had a session of vomiting which is a rare thing for me.  Because it was a weekend I called the oncology triage number at Duke.  The oncologist on call told me that I should get down to the Duke ER for a MRI of the brain, the concern being that there was a bleed on the brain at the site of my radio surgery.  Thinking we would be down for a scan then back to Todd, Helen and I jumped in the car and headed to Durham.

Having waited long hours in ER waiting rooms we were prepared for a lengthy stay - I with my Kindle and Helen with her Ipad - but this is Duke which continues to be amazingly efficient.  Consequently, it wasn't but a matter of minutes before we were shown to a room in the ER little understanding that we would be there a long time.

A Few Minutes in the Duke ER Reception Area

The parade of Doctors, Nurses, Specialists and trips to scanning ensued.

Getting Checked Out in the ER

I was told that the scans were consistent with no large bleeding but the wanted to admit me in case there was a change so, after eight hours, I took a ride up to the oncology ward on the ninth floor.  The staff there was wonderful and asked if there was anything I needed.  I had been throwing up in the morning and not feeling good most of the day but after the jar full of drugs they had fed me in the ER I was feeling better and hungry.  I asked if there was anything they could do and lo and behold a ham sandwich and a ubiquitous can of ginger ale appeared.  Since it was 10 pm and it was the first thing I had to eat all day it was delicious

Dinner at Last

As I mentioned we didn't expect to be spending the night so we had no change of clothes, tooth brushes etc.  It wasn't bad for me because I got to wear those backless gowns that hospitals seem to favor but poor Helen was stuck with what she had on.  My darling wife refused to go find more comfortable accommodations and, after I had gone for yet another scan, bedded down in a way less than comfortable chair in the room.

Helen Trying to Sleep in RM906

Sunday was a quiet day of hanging out in the room, watching TV (I thought this would be a treat for us because we don't have cable or satellite at home but it wasn't as great as we thought it would be) and resting. Helen went out for some much needed supplies and I did a lot of resting.

Resting in RM 906 on Saturday

Monday was down to business day.  I was visited by Dr. Patel, my radio oncologist, who told me that there were two more small lesions in my brain and because of that and the large tumor that was slightly bleeding he recommended that I be treated with whole brain radiation.  Whole brain is where they send x rays into the entire brain area that are strong enough to to kill the cancer but not your brain cells.  Sounds like fun don't you think?  Side effects include fatigue, some cognitive loss and the chance of hair loss.  So if you see a confused bald headed man walking around Todd trying to find the Mercantile be sure to say hello :-)

I guess you can't have brain radio treatment without a mask so first thing I was wheeled to the Cancer Center to be fitted for another Hannibal Lector look.

The Whole Brain Mask

 I will wear this mask for each treatment.  The first treatment started that day (Monday) and I will have to go in each weekday for the nest two weeks before the treatment is complete.  A little later I spoke to Dr. Hanks, my oncologists, who concurred with the whole brain treatment and told me that the whole body PET scan the did Friday showed that the tumor in my spleen and liver are still responding to the Ippi and were smaller than the last scan but that another tumor had been identified.  We will discuss all of this as well as treatment going forward when I meet with him a week from Friday after the radiation treatment is complete. 

Our wonderful friends Karen and Rick Wilson are again playing host to our stay here.  My son Sean came down on Monday after 12 hours bouncing around airports as flights were canceled and rescheduled.  We had a wonderful dinner compliments of Karen last night and I struggled to find adequate words to thank her. After dinner we drove to the airport to pick up my daughter Sarah who was arriving from Austin.  We are all together now and I am so happy to have the kids here with their stories, photos and videos of the grandkids.  What could be better.  

We will head back to Todd tomorrow after treatment.  Our many friends in Todd are organizing a fund raiser for us on Saturday.  It is hard to admit that you need help but the cost of dealing with cancer is just short of unbelievable.  More on this in a future blog.

I hope that you will forgive me for ending this chapter now.  It is getting harder to keep all of my thoughts in order but I very much want to keep all of you informed and to let you know that I am think of you all just as you are thinking of me.  I continue to be amazed by the blessings that have come to me and want you all to know that they far, far outweigh any difficulties I have had.       

Scrambled Brain

It is hard to believe that it has been over a month since my last post.  A lot of things have happened during that time and I will try to get to most of it now but I wanted to say first that I am sorry for not being better about getting things posted.  A combination of treatment ups and downs, a busy daily life and holiday schedules managed to keep me away from getting updates done.  So without further ado, here are some things that have happened since I last posted.

My last radio surgery treatment was pretty much like the previous four - lay down, get your mask screwed in then go to that happy zen place in your mind while your brain is invaded with x-rays which hopefully will wipe out the nasty old tumor cells but leave the good guys in tact.  After the treatment I met with both oncologists that are treating me.

Dr. Patel Master of the Xray

 Dr. Patel, my radio oncologist, said that he felt the radio surgery went according to plan which I was glad to hear.  I asked him about the margins that were used in the treatment and he told me that the rays were targeted at the lesion plus one millimeter which is three hundredths of an inch - amazing that they can control those rays to such a degree of precision.  Because the brain in not efficient in removing dead tissue the doctor said that it would be three months or so before he would order a new scan on my brain that will hopefully show that the tumor is gone.  In the mean time, he wrote out a schedule to ease off the steroids which was fine with me as this drug had a nasty combination of side effects like insomnia, weight gain and nervousness.

Dr Hanks "Follow My Finger"

Next on tap was a meeting with Dr. Hanks my oncologist.  With the exception of the now fried brain tumor Dr. Hanks reported the remaining ones are responding well to the Yervoy (Ippy) treatment.  Of the original five tumors three are gone and the two remaining are reduced in size.  Dr. Hanks explained that the hope is that my T-cells have been reprogrammed by the treatment so that they will continue to attack any remaining or reoccurring melanoma cells.  The tale of the tape will be just before Christmas when I will be going back to Duke for another series of scans.  The scans  will show that 1) all the tumors are gone 2) the tumors are the same 3) the tumors are larger 4) the tumors are larger and there are more of them.  The good news is that there are treatment options for any and all of these possibilities.

After all of this seemingly good news Helen and I headed back up the mountain to our beloved community in Todd feeling like we had a number of weeks to relax and not worry about cancer for a while.  Unfortunately that was not in the cards.

We were glad to get back to Todd after a week in Durham.  Helen's close friends Bridget and Stephanie came from the Cincinnati area to Todd to visit.  We had a great time playing cards and eating wonderful food.  Helen really appreciated talking about the old days with these two wonderful ladies that have meant so much to her for so long.

Three Wonderful Ladies

Next on our schedule was a trip to Gatlinburg TN for the Smokey Mountain Gift Show.  This is a very large event actually located in three different locations where retail operations like Helen's Todd Mercantile go to met all kinds of suppliers.  God bless Helen's daughter Elise who minded the store and our home while we went for what we hoped would be work and pleasure.

Helen Negotiates with a Vendor at the Gift Show

The trip started out OK but I started to feel ferry run down and suffered from headaches.  Helen kept working the show while I went back to the hotel for some rest.  The show is so large that it takes a number of days to see it all.  Helen did a great job reordering items that worked this year and finding some great new items for next season at the Merc.

When we got back to Todd it was time for our monthly Contra Dance which was a lot of fun.  We make dinner for the band and callers who then entertain a crowd of dancers in the Gallery of the Mercantile. Contra dancing is like square dancing and the callers make it easy for beginners and experts to enjoy the fun.

While all of this was happening my headaches kept getting worse and I was feeling very out of it.  It all came to a head when the pain in my head got so bad that I just could not do anything.  On top of that I had an unusual pain in my lower back that ran from there down my hamstrings to my knees.  I emailed Dr. Patel but was not able to get in touch as he was out of town.  I was able to connect with Dr. Hanks who tried to get an appointment at Duke for a scan of my spine.  Unfortunately Duke was booked and the first available appointment was not for a couple of weeks.  Knowing that I was not going to be able to last that long Helen and I went to the emergency room in Boone where we were admitted and saw the same nurse and doctor who had been there to diagnose my brain tumor.  All in all this was not looking good as we waited for an MRI of my spine.

Yet Another MRI

 When the time came I was wheeled down to the scanning room and experienced again those strange loud sounds that make the MRI procedure a strange one.  When they were done I was wheeled back to the waiting room so I could change back into my clothes and await the results of the scan. By now Helen and I were experts at this routine and all of our experience with initial scans were bad.  Consequently we were pretty sure that we would be told about yet another tumor in the spine - a favorite spot for melanoma.  When the doctor finally came to give us the news we were surprised to hear that I had a perfectly normal spine for a sixty year old man.  We were never so happy to hear about the bulging disks and old fracture because the one thing that was not there was another tumor!  We left with some prescriptions for the headaches and relief that it was not as bad as it might have been.

Yahoo! Nothing There.

Since the trip to the emergency room and having consulted with both Dr. Hanks and Dr. Patel (I will forever be amazed at how available the fantastic Doctors at Duke Cancer are) I am back to taking a small dose of steroid which has helped with the headaches.  I am also sleeping better which has helped me to get some much needed rest.  While still not one hundred percent myself, I am feeling like I have turned a corner and hope over this hump soon.

There is more to tell about this time period but I will end now with a promise to get another update done ASAP.  I can never end a post without thinking of all the wonderful folks who have been so supportive.  Your efforts to help me in so many ways have been such a blessing to me and indeed have been a great help to me.  It is a great joy to me to know you all.

J