Thinking of You

Nothing on earth can
make life more worthwhile
than the sunshine
and warmth of a
beautiful smile.

November is Pancreatic Cancer Awareness Month

Josie Jo

Our little Josephine is growing and changing every day. She is just over two months old and is the cutest, sweetest little baby girl! She loves to be talked to and tries to carry on 'conversations'.... her cooing is so precious! It's heartwarming to see Ben and Sally with their daughter and I know that 'Josie Jo' MUST be the 'apple' of her grandpa Joe's eye :) She will grow up knowing all about her grandpa.


Josephine's Proud Mama and Papa


Great Grandpa Decker


Great Uncle John


Photo op for her grandma


Josie and Great Grandma Decker


Josie does the 'do si do'


All dolled up


A conversation with Mama


Josie Jo's Jammies

New Addition

Joe's granddaughter, Josephine Gray, came into our lives on July 1, 2011.

Meet little Josephine here.

Sometimes it can't be done here on earth...

Thinking of Joe and our cousin Sharon Rickman

Joe Gray: continuing to make his mark on this world

THANK YOU THANK YOU THANK YOU!

Over $3,095 has been donated in the memory of Joe Gray toward Pancreatic Cancer research! This is truly a testament to how many people Joe's life touched & how respected and admired he was by his peers, friends and family.


To view the kind sentiments of these donors or to make a donation, visit Joe's memorial webpage here - http://www.firstgiving.com/fundraiser/joegray/keepthememoryalive

Pictures of Joe

Funeral Details of Joe Gray

A Rosary Service for Joe Gray will be held at 6:30 pm on Sunday, May 8th (Joe's birthday) at Jones Funeral Home, 801 Garrettson Street, Burlington, Kansas 66839 (map). Joe's Funeral Service will be held at 10:00 am on Monday, May 9th at St. Francis Xavier Catholic Church, 214 Juniatta Street, Burlington, Kansas 66839 (map). A meal will be served in the church hall immediately following the funeral, so - if you can - please join Joe's family to continue the celebration of his amazing and blessed life. 


There is no obligation to attend these services; we understand that not all of those who want to be there will be able to.


Please don't send flowers. The impact of a donation to the Pancreatic Cancer Action Network in Joe's memory will last much longer and mean much more to Joe's family. Please make any donations here - http://www.firstgiving.com/fundraiser/joegray/KeepTheMemoryAlive


Unfortunately for those coming from out of town and in need of lodging, the hotel in Burlington, Kansas is completely full.  Here are a few other options:

• BETO Junction - 15 minutes North of Burlington: Wyatt Earp Inn & Hotel, (620) 256-6351
• Yates Center, Kansas - 15 minutes South of Burlington: click here
• Ottawa, Kansas - 45 minutes North-East of Burlington: click here

It's so hard to say goodbye

It hurts my heart to say that Joe Gray passed away around 9:00 am on Wednesday, May 4th. With his wife Vicki, son Ben, daughter-in-law SallyAnn and granddaughter-to-be at his side, he was surrounded by love when he left behind his earthly body. His battle with pancreatic cancer is over and pain can no longer touch him.

We are still finalizing plans for his funeral. It is likely the service will be held in Burlington, Kansas at 10:00 am on Monday, May 9th at St. Francis Xavier Catholic Church. We will post details of the service as soon as they are finalized, so please check back to this blog. Please note that in lieu of flowers, we are requesting donations be made to the Pancreatic Cancer Action Network - details to follow.

THANK YOU so very much for all the love, support, prayers, hugs, calls, emails, cards and care you have shared with Joe and his family over the past two years. It meant the world to Joe and it means the world to his family too. He was so LOVED. Thank you.

The Latest - trying to get off the ventilator

Joe is still in the ICU at Coffeyville Regional Medical Center (Kansas). While his surgery on Friday went fine, the latest obstacle is the ventilator (breathing assistance via tube) which was inserted in advance of the surgery. On Saturday morning, they tried to wean Joe off the ventilator, but his blood pressure and heart rate got too high in the process, so they kept the tube in and let his body rest and recuperate for the day with the goal of trying again on Sunday. Joe's lungs are weak and in distress due to pneumonia.

Unfortunately, Joe had a rough night Saturday night, running a fever and producing more fluid in and around his lungs. They were able to drain the fluid and the doctors decided to give him the day off again, giving him antibiotics and letting his body recover a bit longer.

Over the course of the weekend, Vicki, Ben & SallyAnn spent time on and off with Joe, letting him know the love and support he has behind him. Ben & SallyAnn returned to Kansas City on Sunday evening to begin another work week. It was hard to leave, but we had a good weekend coming together and supporting each other as a family.

Vicki spent this morning (Monday, May 2nd) at Joe's side. His doctors decided not to try to wean him off the ventilator today, with the goal of trying tomorrow. If needed, they should be able to drain his lungs prior to weaning.

To allow his body to relax and heal, he has been on pain killers and in a drug-induced paralysis, but today he was allowed more consciousness and was able to interact with Vicki. She said:

"It was awesome being able to get responses from him...except when he shook his head 'no' to my being able to sing and 'yes' to Sally's singing :0"

Even though Joe cannot speak with the ventilator in, they said the Lord's Prayer together - Joe with perfect lip movement.

Please pray that Joe's lungs will respond to the antibiotics and he will be strong enough for the doctors to get the ventilator out safely.

Update - back in Coffeyville, back in the hospital

Joe & Vicki returned to Coffeyville (from M.D. Anderson in Houston) around April 20th.  His bilirubin was trending down and his pain was better under control, so they sent him home to continue to recover from the multiple procedures they had done in Houston to unplug the bile duct.  Joe did really well on the 10 hour drive back home.  Joe rested and appreciated being back home, but was still uncomfortable due to pain and was unable to eat much (which translated to zero energy).
Last weekend, Ben & SallyAnn (plus gestating baby and Milo) came to Coffeyville to spend the Easter weekend with Joe & Vicki.  At about 1:00 am, early Sunday morning, Joe went to the emergency room due to difficulty breathing.  They found this was due to fluid in and around this lungs.  On Easter day they removed 1500ml of fluid from one lung.  The next day they removed 800ml from the other lung.  Joe felt some relief with this liquid gone and the addition of a nasal oxygen tube, but was still plagued by very low energy, pain and disinterest in food.
As the early part of the week passed, his disinterest in food turned into uncontrollable and unmanageable gas (belching) and the inability to keep food of any quantity down.  With his strength and energy level already low, they looked further into this new issue to discover there was a blockage between the stomach and the small intestines and moved him to the Intensive Care Unit on Thursday (4/28/11).  They continued his oxygen and I.V. and added a feeding tube.  A cancer tumor outside of the stomach was pushing against the duodenum (the "door" between the stomach and the small intestine), causing pressure, reducing the size of the stomach and not allowing it to do its job.  This morning (4/29/11), surgery was performed to bypass the duodenum to allow his body to regain the ability to take in and process nutrients.  They also removed 2.2 liters of liquid from his stomach and added a tube to continue the draining after surgery.  He did well in surgery and his vitals are good.  He is back in the ICU recovering and resting.  The doctors plan to remove the ventilator tube tomorrow (Saturday) morning, which will allow him the freedom to speak again.  Vicki has been by his side all week and Ben & Sally arrived around 2:00 pm on Friday.  With the tube and medication, he is unable to speak, but we were able to talk to him and he could hear us.  He was moving his eyebrows and squeezing our hands in reply.  He is so strong.

(This picture is from Tuesday)

It's worth noting that each step in this journey has been made with considerable thought, weighing the pros and cons at every turn.  Each day and every hour seem to bring a new set of options and choices.  It can't be said enough - we appreciate everyone's thoughts and prayers.  They truly comfort Joe & Vicki & Ben and each know the army of love standing behind them.

Time in the Hospital

Today (Friday April 7) makes twelve days that we’ve been in Houston. And those twelve days have been a whirlwind; a trip to the emergency room, admittance to the hospital, an endoscopic procedure to place a stent, then one to remove it, and two procedures done by interventional radiology.

A week ago, the doctor placed a stent in a blocked bile duct. Because that failed to open the duct enough, I now have a biliary drain tube in my side. The stent was removed today and next week, another procedure is scheduled to place an internal drain tube. I had become jaundice and there was a rise in my bilirubin.

Since being in the hospital for seven days, I have been pushing myself to exercise so Vicki and I have taken numerous walks through the hospital halls. This weekend I hope I can venture outside.

Ben will be here Saturday morning and will stay until Monday morning. I am looking forward to his visit.

As long as the pain is controlled, I am doing OK. We don't know when we can head back to Kansas.

Joe

A Setback

The attempt to place the stent was unsuccessful. There was swelling where the ducts open into the duodenum, and the doctor was unable to thread his wire up the correct duct. He is to visit with my other doctors. Maybe tomorrow we will learn what the next step will be.

More doctors

In last week's blog I mentioned an enlarged lymph node that might cause problems by creating blockage of a bile duct. By last Friday evening I started having symptoms such as my hands and feet itching. I went in for a blood test on Monday morning and that indicated a probable blockage. Tuesday was spent with phone calls between us, doctors, nurses, and the insurance company. This morning (Wednesday) I had an Ultra Sound on my abdomen so that the Gastroenterologist would have something to look at and determine what I needed. In the afternoon we visited Dr. Kirkpatrick in Bartlesville to see if he could help. Tomorrow morning (3/24/11) he will put a stent in the bile duct.
The procedure is endoscopic, meaning they will run a scope, and other instruments, down my throat, through my stomach and duodenum, and into the bile duct. Somehow they are able to then place the stent which holds the duct open for the flow of bile.
The doctor said the same type of procedure is used for gall stones which block the bile duct.
There is a possibility the stent would need replaced in 6 months or so. There is a more permanent metal stent, but placing one of those involves incisions. We'll see how it goes tomorrow, but incisions do not sound like fun.
Being in Bartlesville gave us the chance to go to Dink's BBQ and bring home supper. That made the trip worthwhile.

Houston visit, March 2011

Ben went along with us on this trip, so we drove to Houston on Saturday, giving us all day Sunday to do other things. We slept in, then took the train downtown. Vicki had read about a couple parks that had activities so that's where we headed. We ate a Greek breakfast at the first park; very tasty! The second park had a farmer's market and vendors, including a beer garden. We wandered around the park, then Ben & I each had a beer while Vicki had wine. We just enjoyed the weather while we chatted and watched people and their dogs. We got to meet an Italian Greyhound that looked very much like Ben's dog, except he was much fatter. We wandered around downtown and checked out a couple stores before we headed back to the hotel.


On Monday, my appointments did not start until 3:00. We had lunch at the Spicy Pickle, then wandered around Rice Village before heading to MD Anderson for tests. It was after 8:00 pm when my tests were finished.

Tuesday morning we learned that there were mixed results from my CT scans; the tumors on my liver had shrunk, but the spots in my lungs had grown (not hugely, but enough to be definite). There is also a lymph node slightly enlarged that may be putting pressure on one of the ducts from the liver, which could be causing a slight rise in a couple liver enzymes. Another of the liver enzymes is normal. If this becomes a problem, they would probably put a stint in the duct.

We spoke with the PA first, and she seemed upbeat, optimistic, and talked of treatment options. Our doctor, on the other hand, seemed serious and only spoke of 2 treatment options. He is certain that since the lung spots had grown, the chemo is not working. There is an older chemo drug we could try, but the doctor only gave it a 5 to 10% chance of working. In his opinion, my best option is to get into a clinical trial. Our appointment to talk with the researchers is on April 4, so we will be heading back to Houston in three weeks. In the meantime, I am off chemo. In a few weeks, maybe I'll have hair again.

I don't know much about the clinical trials, but we would have to do them in Houston. Maybe that means staying in Houston for 6 to 8 weeks (we don't know) or maybe it means frequent trips to Houston, then home in between. We have more questions than answers.

One day at a time.

Joe

Vacation day!

Taking a vacation day today because I had 5 to use up before April 8. It's hard to believe that's my 9th anniversary at Deere already! The weather is good, except for the wind, so how to decide what to do first?
The good thing about this chemo is that the worst of the side effects are relatively short-lived. Last weekend was mostly a loss, and I didn't feel like working Monday, but Tuesday on I felt OK, although a little fatigued. Today looks like it will be a great day!
This weekend we leave for Houston. We'll probably leave tomorrow and have a little time to do something in Houston instead of our usual rush trip in and out. Ben is going with us this time. He will drive to Coffeyville after work this evening. Wish Sally could go, too, but it would be a very tiring trip for a pregnant lady, and she would have to take time off from work.
I'm pretty anxious about this scan. If the chemo has been working, the days of feeling rotten are worth it. If not, the doctor has to find a different treatment. I just pray he doesn't run out of options.

Addendum

This chemo was worse than the others. I didn't make it to work today. I didn't set my alarm because I haven't been getting enough sleep. I woke up in time to call in, and I intended to go in this afternoon. I got showered and half dressed when I decided I just didn't feel like I should go in.
I'm just fatigued and didn't feel like I could sit at my desk and do anything constructive.

Another chemo behind me

Had another chemo on Thursday afternoon (3-3-11). I didn't feel as unaffected as last time, but still plenty good enough to enjoy the nice weather and go for a walk afterward. We probably hadn't been on that kind of walk since we were in Houston last November.
As mentioned, this chemo seemed to have more effect, and by Friday afternoon I was feeling tired and just generally not too good. I did not sleep well Friday night; I just couldn't seem to get comfortable. Felt terrible all day Saturday. Right after lunch, I started having pain around my rib cage and up my back which is one of the side effects of the drugs. I had that for the first round, but not the previous 2. Ibuprofen helps, but it sort of comes and goes. Part of the time, I felt like I was hot and cold at the same time. A heating pad and a recliner help, too. I still didn't sleep too good.
This morning was better, but still not good. This afternoon I was getting restless, so we went for a walk. It felt good to be out, but I feel pretty sensitive to the cool wind. Seems like some of the back pain may be creeping back in this evening.
My hair hasn't changed much since the last post. I still have some on my head, but it's way too thin to grow out into anything, so it has to be shaved. I still have my mustache and goatee even though they are much thinner and more gray. It appears that whatever whiskers I lost were the dark colored ones. The good thing is that I probably won't lose my eyebrows and eyelashes.

No more hair

Here's the picture everyone has been waiting for. It's been this way for a week, and I am still almost shocked when I see myself. I wonder how long it takes to get used to? The mustache and goatee are much thinner now and will probably have to be shaved in the next week. I will get another chemo treatment on Thursday.
We were in KC over the weekend, and Ben had shaved his head! What an incredible thing to do as a show of support. Especially in the middle of winter. Thank you, Ben!
The good news is that the weather has warmed considerably. On Thursday we should be 90+ degrees warmer than last Thursday (it was -21).

To prepare for my hair loss, Vicki gave me a hair cut. I was ready to get it cut because it was so long it bugged me. This picture doesn't really show how long and thick my hair was.

Friday, February 4, post haircut. My hair was only a half inch long at the most.

After my last post, things didn't get too much better for a couple days. I felt lousy and had a lot of pain around my middle and up my back. I had a lot of trouble getting comfortable in bed and spent 1 night in my recliner with a heat pad on my back. I even missed part of a day of work on Monday.
After that things got much better. By Friday I was feeling good. On Saturday the weather was nice (haven't been able to say that since) and we spent 4 hours cleaning and organizing in our shed. I continued to feel good for the next week.
Took a second round of chemo on Feb 3, 2 days after the blizzard. Thank God for 4WD! I felt OK after the chemo until about 8 o'clock. Went to bed at 8:30 and felt OK on Friday for work. On Saturday I got up and felt like I had the flu. Felt rotten all day long. Better on Sunday, but still didn't want to do much. Thankfully I didn't have the pain I had the first round. Monday I was OK for work.
This morning my hair fell out, literally. As I rubbed my head under the shower, it just wouldn't stop falling out. I finally had to quit touching it so I could get out of the shower. Vicki used clippers to shave what was left as short as possible. We'll have pictures later.

Latest chemo

Started the new round of chemo on Thursday afternoon. Some of the side effects I may encounter: Hair loss (almost a certainty - may start within a couple weeks); Low blood counts; Numbness, tingling, or burning in the hands or feet; Fatigue and weakness; Mouth sores; Joint and muscle pain; Stomach upset and/or diarrhea. So far no major side effects. Yesterday I felt great, although I got really tired by the end of the day. Today I don't feel terrible, but not good. I guess just sort of lethargic.

Vicki is supposed to give me a haircut sometime today as preparation to losing my hair. I had grown my hair longer to make it lay down better. I think previous chemo had caused it to want to just stick straight out. I haven't really enjoyed the longer hair, though, so getting it cut doesn't bother me. Even losing the hair on my head doesn't bother me as much as losing eyebrows and eyelashes. That just seems really weird. Not having to shave will be nice, but not being able to grow a mustache will be difficult. There has been very little time during my adult life I have not had a mustache.

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Wednesday January 19, 2011

Met with the Oncologist this afternoon to go over the new chemo regimen, the possible side effects, etc. The first treatment will be tomorrow afternoon.

Joe is a Rock...

Vicki

Not exactly the news we hoped for...

We got home Tuesday night about 8:00. The trip home was very uneventful. That was what we wanted after the trip down through the snowstorm in north Texas. I was aware we would probably encounter snow on the way down, but I didn't think it would be too bad. I was wrong! I don't remember traveling in any worse conditions. For about 25 miles we had to follow a car averaging about 15 mph with visibility of only a few car lengths. All in all we drove on slick roads for about 100 miles and the snow added about 2 hours to our trip.

My test results were not so good. There are numerous very small spots in my lungs that are very likely tumors. There is also a small, new spot on my liver. The tumor that received the radiation in November is larger, but Dr. Abbruzzese thought that could be due to the radiation. The primary tumor on the pancreas is "largely unchanged" according to the radiologist.

This is somewhat hard to take since I don't really feel sick, I don't look sick, and I don't act sick, but there is something in me that could make me very sick. Well, we'll start another round of chemo next week and pray it works as well as the chemo I started about 21 months ago. I will be getting Gemcitabine and Abraxane if insurance approves. Otherwise it will be Gemcitabine and Docetaxel. Gemcitabine is one I have had before. Abraxane and Docetaxel are the same class or type of drug and Dr. Abbruzzese was not too concerned if insurance didn't approve Abraxane.

Either of these drugs will probably cause fatigue, and this time I could lose my hair.

Time for a check-up

Sunday (1/9/11) we will head south to Houston. This will be my first CT scan since radiation in November, so I am pretty anxious to know how I'm doing. I've been feeling good and my energy level has been the best in a long time. I still need plenty of sleep, but I've made it through each work day in good shape.

Between Christmas and New Years we went to Ben & Sally's for 3 days and I helped Ben put sheetrock on the ceiling of their extra bedrooms and part of their upstairs hallway. The hardest part was carrying that stuff up the stairs. In spite of being really worn out, it felt really good to do some work like that. I honestly didn't know if I would have the strength and stamina to do that kind of work, but I did. The sheetrock work is the start for Ben to get a nursery done by July. Most of you probably already know, but Vicki & I will become grandparents in early July. We have already offered more time to help Ben with the project.

The weather forecast indicates we may be driving through snow in North Texas tomorrow. Why do we have to go south to see snow? By the time we get to Houston it should be dry, but it will still be chilly, darn it! Looks like it will be cold when we get home on Tuesday. If we are home early enough Tuesday, I will post my test results, otherwise it will be Wednesday night before I post.