each step I take is easier with you

Dear Family and Friends,

It's hard to believe that September is just a few days away.   The hours seem to pass without notice here in the house the love built.

Jack continues to get weaker by the day,  he is no longer able to stand on his own...needing assistance in the smallest of things.  His weakened state also reflects in his communications.  He rarely speaks, and  even hand signals are getting harder to convey.  I'm not sure if it is the tumor in his brain, weakness from barely eating or lack of oxygen that is causing it (he frequently will not use his oxygen).  Whichever it is, it seems each day that passes he is more and more disconnected with those around him.   Although he is still aware of what's going on around him and can hear you.  Yet, there are still moments (usually around 4am) that he has moments of clarity where he can articulate his needs and understanding.

The time has come that we feel it is in Jack's best interest to limit the visitors he has.  It just takes so much out of him.  I know there are a lot of people who wished to come see him, but know that he loves you.  Right now is time for family and close friends.  

We have moved Jack upstairs into our bedroom which Jack also considers his space, his retreat.  This is where we always spent our time after a long day.  We knew Jack would feel better - more at peace - being up here.   And thanks to Walt and Jim we were able to move the hospital bed up too!  (Along with Jacks memory wall)

My nephew Steve is here today helping us out.  He came up from Raleigh, where is in town from San Franisco for a veterans job fair tomorrow.   

I want to give a big shout out too all our friends here in Todd who have recently set up a meal train to assist us.  It has been a huge help to not have to worry about what we are doing for dinner!  Thank you Linda for setting this up!

Each step I take is easier with you.  

My brother-in-law Tim is walking The Way ('The Camino de Santiago' trail in Spain) this is what he told his wife (my sister Mary Ann) when she joined him for the last 100 km.  I find that it is that way here with Jack.   As hard as this is, it is easier with him and the help we've received from all those around us.  Even from those who are here in spirit - We feel your presence! Your prayers, concerns, loving thoughts and support have made each step on this path easier to take.  An analogy that I think Jack would like - it's like trail angels giving respite and meals for us and helping us carry our load on this uphill climb.  

I also want to thank Hospice for all they are doing to help us.  Their guidance in this difficult time has been a Godsend.  They helped both my parents, and many others to navigate though these hard times.

Thank you for all your continued prayers, love and support.  

Love truly is the greatest gift of all, 

Helen

Looks like I feel pretty shitty

Dear Family and Friends,

Just wanted to send out an update and let you know how we are all doing here in the 'house that Jack built'.

Jack has been doing okay.  He is increasingly tired and weaker.   He has moments of anxiousness - being stuck in the house for days and wanting to go out, moments of frustration - not being able to come up with the words he wants or expressing himself adequately, plus not being able to do the things he used to or walking around the house or to the bathroom alone, moments of confusion - wondering why people are coming to visit him (is someone sick?), why does he have to take so many drugs - what are we giving him, etc.  Still, at times Jack comes up with what I think are the most brilliant and prefect words that sum up a situation.  Sunday morning he was eating breakfast and said "it looks like I feel pretty shitty."  Well, you can't argue with that - as he takes a handful of drugs.

He is beautiful.

Sean had been here all weekend helping with some overnight as well as daytime duties.  Saturday night was a rough one for Jack.  He was up all night (he would only lie in bed from around 2-4:45) I had to wake Sean up at 6 am to take over for me since I could not stay awake with him anymore.  I went to sleep on the couch and woke up to them going outside on the deck around 8.  Jack was wide awake until around 9:30 when we finally convinced him to lay down and close his eyes for a bit.  Some days/nights are like this.  

The love we feel "in the house that Jack built" has been nothing short of amazing.

Some visitors he has he engages with and laughs, some he seems distracted and disinterested in... this is not a reflection of the visitors, but of his mental state at the time and how his night goes.  Please understand.  And please understand, his moods can change rapidly.  The tumor in his brain is affecting some of this, the drugs also play their part. 

As most of you know, Jack has loves music.  As his son Sean said "When I was younger, there was always one unbreakable rule in our house - do NOT disturb dad while he was playing guitar. It was his time..."  

He has always found solace in music.  These past couple weeks we have been so blessed with other musicians (who perhaps know this is where he finds his peace) have come over to play for him.  For Jack this has been a true gift.  Sunday a week ago we had Cecil Gurganus, Charles Welch and John Kirby come over and play for Jack.  Then the following Monday our good friend Hank Orr came by and played for Jack.  During these times, you will catch Jack watching their hands find the chords, tapping his foot to the beat or strumming his fingers.  A couple times he even tried to play along.  Here is Jack playing along with Hank Orr for a moment.

He's a rock star always!

This past Sunday our friends The Tillers came by.  The Tillers played at our wedding and our one of our favorite bands.   They played Saturday night at the park for the TCPO summer music series and then came over to our house before noon (which is early for musicians!) and played a set for us!  It was remarkable!  After they left Jack said "Now that was really cool!"

Jack with The Tillers - Mike Oberst, Sean and Aaron Geil

Jack is right - that was pretty amazing and cool!

We have also had some family coming in to wither help at the store or here at home or to just visit with Jack.  Our daughter in-law Paige has been amazing!  She has her parents watching the kids so she can be here and help with Jack.  Jack feels quite comfortable with her so she is able to help in every capacity... which helps me out more than I can say.  My sister MC had come for a few days to help with the store, and now Jacks oldest and youngest sisters are here.  'Reen and Peggy.  Pretty amazing since 'Reen just had surgery and stopped her chemo treatment to come down to see Jack.  She has been battling colorectal cancer since last year.  Jack's ex-wife Lori and her husband Lanny are here also.  They created a date night for Jack and I last week that was amazing!  We had one of Jack's favorite meals - lobster rolls.  Tonight they making another delicious meal for us that already smells mouth watering!  

Lori and Lanny gave us a date night that was spectacular!  

It's a true testament to Jack all the love and support we feel here in this home.  He is a visionary and a touch stone to so many people, including me.  

I will try and write more sooner rather than later, but it is hard to find time to sit and get my thoughts collected enough to put them down.  

Thank you all for your continued love, support, prayers and positive thoughts, it strengthens us for our challenges for our path that still lies ahead.

Peace love and courage to see us through

Helen


“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

"Love you, love you

And in the end, the love you take
Is equal to the love you make"

~ The Beatles

Home is where the Heart Is

Dear Family and Friends, 

Jack, Sarah, Sean, Paige, Lori, Lanny and I all arrived home on Friday to the great delight of Cody (our little dog) who had been a nervous wreck since we left Tuesday night.  Elise and my sister Kathy (with the help of hospice) had the house all set for us to move into the downstairs bedroom.  We had everything we needed to make the transition.  

Sarah, Jack and Sean before we left the hospital

Jack is on steroids which is keeping the swelling down in his brain.  They are also giving him energy, albeit temporary,  although he does wear out easily and needs rest.   He is also in a great deal of pain, that with the help of hospice we are managing to get under control.   I fear the tumor in his abdomen is giving him the most pain.  As it continues to grow it is displacing his organs.  You can see in the x-ray below how much it has squeezed his lung.  It also is moving all his major organs as it continues to grow.   In the CT scan they did on August 1st (without contrast, so it is not an accurate measurement) here is what the report said on the mass.  
"There is a large mass centered in the left upper quadrant and extending to the right of the midline, displacing the pancreas, spleen, and left adrenal gland and kidney. The mass measures up to 17.7 x 24.4 cm transverse dimensions; it is likely grossly unchanged in size since previous study. The mass closely abuts and displaces the the stomach and closely abuts loops of bowel in the left upper quadrant."
  

chest x-ray they took last Tuesday at Duke ER

 I can only imagine the pain he must be in and wish I could make it go away.  

Jack has had a few close friends stopping by... but this weekend was about his kids Sean and Sarah spending as much time with him as they could.  Sean had to leave last night to head back to work at ESPN, working on a big website launch and Sarah leaves tomorrow.  I know how hard this has to be on them both.  However, Sean's wife Paige is staying with the grandkids, Lori and Lanny are still here and Paige's parents Pat and Joe have come up to help with the kids so Paige can help at the house here.  
   

A big plus is Lanny and Joe are excellent cooks, so they've been preparing meals for us 

I know how much so many people want to stop by and see Jack, and let him know how much they love him. It's hard, because he wears out so easy.  A lot of conversation is hard for him to follow between the brain lesions and drugs and he ends up getting confused.  Friends are more than welcome to stop by anytime, but please we ask that you give a call before you come to make sure he is awake and up for visitors.  Even then, we may have to limit your time, due to his discomfort/pain.   

Yesterday, some of our friends that are musicians have been trying to get back together with Jack since they played together back in late March.  Jack was working on making a CD of some of his favorite tunes to leave his grandkids and he had incorporated Cecil and Charles to help him out with it.   Well the timing never worked out.  I spoke with Cecil Saturday morning and he wasn't sure if they would be able to, but he was going to try and get Charles Welch and John Kirby to come over and play.  He called first thing in the morning and told me it would out for all of them to come.  It was great, they gave Jack a little listening session in our living room.   When he hit is wall of pain, he went back to his room... but asked that they keep playing a song or two so he could hear from his bedroom.   We have another musician friend who is planning on stopping by tomorrow to play for Jack... and also a friend who is planning on reading to Jack, since he has a hard time reading himself anymore.  We are blessed to have such a great network of family and friends indeed during these troubling times.  

   

Speaking of bedrooms, we have created a memory wall of sorts for Jack in his... so he knows how many people love him.  

And just because they are as cute as anything and always brighten our day, here are our grandkids Tanner and Grayson.

Thank you for all the prayers, love  and support we continue to receive.  We are truly blessed by all of our families and friends.   The trail may get steep and winding, but the love will feel will strengthen us for the journey ahead. 

Peace and Love
Helen


“I always think that the best way to know God is to love many things.” 
― Vincent van Gogh

"Remember your promise to me, for it is my only hope. Your promise revives me; it comforts me in all my troubles."

Psalm 73:25-26

Changing lanes

Dear family and friends, 

There is no easy way to relate our latest news... We've received some bad news yesterday and Jack will be entering hospice care after we leave Duke tomorrow and head home to Todd.

Tuesday night we went to the Watauga ER after Jack started displaying increasing confusion and started having muscle coordination troubles.  At the ER they did a CT scan which showed a bleed on his brain.  He was immediately transported by ambulance to Duke and I followed in the car.  

They did a CT here at Duke and admitted him.  Wednesday they did another CT and an MRI.  The bleed was from the little tumor they did radio surgery on in February.  Although it wasn't as little as it was the last time they looked at it (6/27/14).  It has not only started to bleed but has grown.  So, about the same time the tumor in his abdomen started growing rapidly, this booger did the same.  

Since they had already done radiation on it and it being in a precarious place, there is nothing more they can do.  It is in the left Thalmus area, on top of his brain stem.

Photo courtesy http://www.news-medical.net/health/Thalamus-What-is-the-Thalamus.aspx

Dr. Hanks did all he could and stopped by today to talk with Jack.  He let Jack know that Jack had put up a real fight and he did all he could do to help Jack fight.  He told Jack that he (Jack) was one of his most thoughtful and caring patients and that he had really hoped the treatments would work.  Dr Hanks was a true advocate for Jack and you could tell he was sincere when he said he didn't come across many patients like Jack.   

We also talked with the Pallative Care doctor about hospice and pain management.  And the patient services person has connected us with Hospice in Ashe County, who with my daughter Elise have already prepared the house for what we will need when we come home tomorrow.  They will be meeting us when we arrive.

Jack and I would like to thank the staff here at Duke, not only in the cancer clinic, but here on the oncology ward at Duke.   They have all been so very helpful during our visits and stay as Jack battled  this horrible disease.  

 We still have a hard road ahead... But Jack will be where he wants to be, home in Todd. There is no way of knowing how long or hard the struggles on the road ahead will be, but with our families and friends love and support it will make it easier.  

Your continued prayers are much appreciated.  

Peace and Love, 

Helen

The only courage that matters is the kind that gets you from one moment to the next. ~Mignon McLaughlin

Pain and The Hard Talk

“There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.” 
― Erma Bombeck

Dear Family, Friends and everyone else.

We went in yesterday to Duke to see Dr. Hanks.  It was just a check up to see how Jack was doing after last week's visit and anti-PD1 treatment and after being in the hospital.  Dr. Hanks wanted to see how Jack's numbers were looking, how the drain was working and to talk to him.   He also added chest and abdominal x-rays because Jack has a cough and has been constipated.  He wanted to make sure that there wasn't any fluid in his lungs and that his bowel wasn't obstructed.

Jack's numbers came back great.  His protein levels are improving (Jack is working very hard at eating more) and his sodium levels were normal.  He also does not have an obstruction nor did he have fluid in his lungs - great news!  Jack has developed a rash on his back and also a case of thrush... both side effects of PD1 - so even though the side effects are bothersome, we know the drug is doing something.  hopefully it's doing more than just creating fungus!

We also found out that his drain wasn't working because he isn't having any fluid build up - Dr. Hanks ordered a CT scan to be sure.  It wasn't with contrast so they couldn't see exactly what the size of the massive tumor was - but it didn't look as though it had grown to the doctor who looked at it.  

Before they checked out the drain though, Dr. Hanks had the hard talk with Jack.  He explained to Jack that it is his inclination to keep trying to cure him.  That is what he does.  But it is Jack's decision when he chooses that the pain is too much and wants to go into pain management and hospice care.   Have I told y'all how much I love this Doctor?!  Usually he speaks to Jack and to the entire room.  This talk he had with Jack.   He looked over at me - but focused on Jack to make sure Jack was understanding him and what he was saying.  As most of you know Jack is rather hard of hearing and the pain meds (and brain radiation) make it hard for him to follow a conversation in the room.  But Dr. Hanks  made sure he understood.  This is Jack's choice to make.  As long as Jack wants him to, he will continue to fight for Jack to make him well.  Jack understood and is good to go for his next dose of treatment on the 15th.         

Thankfully, this visit Jack's ex-wife Lori and her husband Lanny came with us.  They ended up staying with Jack for his trip over to the ER to get the ultra sound and CT while I ran picked up more merchandise I had ordered for the store.   They got to experience the day long activities at the Cancer center and then the ER - and you know what fun Jack and I have had in ER's.  All of us had been without food all day so at 6:30ish the nurse brought us all bagged lunches and ginger ales (they didn't want jack to eat before they checked him out).  We had just started a little picnic there in the ER room when the doctor came and told us we could leave.  I could not have done the day without them and I know Jack was glad to have them there too. 

The doctor has/had prescribed Jack ambien to sleep but he hasn't taken it.  Lanny told him yesterday how he takes it for the pain in his leg that keeps him up and how it would probably help Jack a lot.  It did!  Jack slept last night better than he's slept in weeks, only getting up a few times and going back to sleep within 15 minutes.    

Pain~
Cancer sucks.  I know, you don't need me to tell you that.  Especially if you've gone through it yourself or with someone you love.  It's hard watching the one you love hurt - for whatever reason - but harder when there is little you can do or if you feel out of control of the situation.    Evener harder when everyone is doing everything right, but that one blockade.  That one obstacle that is making the one you love suffer more, unnecessarily.   And when that blockade doesn't have a face what do you do?  

So I want to share with you some of the aggravations  I have had in trying to manage Jack pain.  Jack has never been big on taking any medications, he would balk at taking an advil unless he really hurt.  So when his pain level increased we knew it was serious.  The Doctor wrote us a prescription for oxycotin.  I've watched Justified - I know it's big on the street - but this is for someone diagnosed and suffering from stage 4 cancer.  (There are 5 stages of cancer - stage 0 - 4).   we went for days trying to get it filled at Walgreens here in Boone.  I kept getting from them that they were waiting for approval.  So I called the doctor a couple times, each time they said they approved it.  Finally I thought for sure it had to be approved by now (after 4-5 days of us rationing what we had and not managing his pain very well)   Someone told Sarah to go across the street to CVS with the Rx.  She did and we got the drug in minutes.  Jack ended  up the following day in Duke hospital to try and get his pain under control.  We were there for 4 days (this was right before his last PD1 treatment.)  

Last Friday, after his treatment the doctor gave us a new drug Rx.  one they had used in the hospital that worked for Jack.  I took the prescription to our pharmacy - Walgreens on Saturday.  Daily I kept getting texts that is wasn't ready.  I called and talked with the pharmacist on Monday and they said they were waiting for doctors approval.  I called the doc (again) and they said they would take care of it.  I called on tuesday - same thing.  I called the doctor and they said they gave their approval... so I asked the pharmacist if it was medicaid.  They said yes.  I called on Wednesday - same response.  Thursday I was busy and couldn't call - but I got another text saying it still wasn't ready.  Friday I called Medicaid on our way to Duke.  Guess what - they approved it on Wednesday (why so long - another question?)  But Walgreens said they were still waiting on approval.  Today I went to Walgreens to pick it up... found out it is THEM holding it up!  The cashier there said it didn't have a price so it was adjudicating in their system so she couldn't give it to me.  Please, someone explain this to me.  Talk about a 'really' moment!  I asked her to give me the prescription, went over to CVS across the street and they filled it within minutes.   Walgreens just lost one loyal customer.       

Thank you for all your continued love, prayers, support and postive thoughts and messages to Jack and I.  We are truly humbled by all the blessings, care, love and help we've received through this

Peace, Love and Hope for the cure

Helen

“One word
Frees us of all the weight and pain of life:
That word is love.”
― Sophocles