Monthly Archives: September 2014

Our color purple! Purple Stride – September 27th, 2014

Our color purple! Purple Stride – September 27th, 2014

Over 150 Jude's Dudes assembled at Jax. Beach Seawalk Pavilion  to raise awareness of Pancreatic Cancer.

Over 150 Jude’s Dudes assembled at Jax. Beach Seawalk Pavilion to raise awareness of Pancreatic Cancer.

Many of us wondered if we should assemble an ARC for the annual Purple Stride 5K to raise awareness and funding for research for pancreatic cancer. It had been raining steadily for several days and the forecast did not show any relief in sight. Floridians were beginning to wonder if our meteorologist had fallen asleep. But, we moved forward with our plan and our goal to kick some pancreatic cancer butt by building teams and raising serious cash for funding of this dreadful cancer. Rain could not deter us from assembling our battle teams.

According to the American Cancer Society, “for all stages of pancreatic cancer combined, the one-year relative survival rate is 20%, and the five year rate is 6%. These low survival rates are attributable to the fact that fewer than 20% of patients’ tumors are confined to the pancreas at the time of diagnosis, in most cases, the malignancy has already progressed to the point where surgical removal is impossible.”

“In those cases where resection an be performed, the average survival rate is 18 to 20 months. The overall five year survival rate is about 10% although this can rise as high as 20% to 25% if the tumor is removed completely and when cancer has not spread to lymph nodes.”

It just made perfect sense to ask my friends, family and neighbors to help us with in this fight. BUT, I was not prepared for what was about to happen.

Purple Stride events can be found across the nation and have been raising awareness and funding since 2003. “For participants it is a time to honor loved ones fighting pancreatic cancer. It is a day when all of the family and friends of pancreatic cancer patients can come together in solidarity to gain both comfort and encouragement.” according to the Pancreatic Cancer Action Network based in Manhattan Beach, California.

Our team, Judes’ Dudes raised over $12,000 honoring family members who had earned their purple wings and others who are in the fight today.
That morning I said a little prayer to God and also to JT that they would please stop the rain just long enough for us to complete the 5K. And, just before the race was started, our prayers were answered, the rain stopped just along the beach in perfect timing, of course.

The survivor tent was a great place for survivors to mingle and share their journeys. It was encouraging to see the hope in their eyes and know that they were not alone in their fight. Numbers and emails were exchanged.

Dr. Horacio Asbun,. Mayo Surgeon who performed my Whipple Surgery laparoscopically

Dr. Horacio Asbun,. Mayo Surgeon who performed my Whipple Surgery laparoscopically


My biggest surprise was to see my hero, Mayo surgeon Dr. Horacio Asbun, the man who performed my whipple surgery and literally saved my life.

After the race, my sweet Tom asked everyone to come back to the house for brunch. Chef Hector and his team from TPC Clubhouse did an amazing job feeding the runners.

fruit and granola parfaits, fruit, danish, egg frittata, and eggs-benedict on a square of grits. Deliciousness all around. And Tom served Mimosa's. It was a great end to a great race.

fruit and granola parfaits, fruit, danish, egg frittata, and eggs-benedict on a square of grits. Deliciousness all around. And Tom served Mimosa’s. It was a great end to a great race.

Two little Jude's Dudes from as far away as Tampa and Cleveland....Frankie and Autumn our little cousins.

Two little Jude’s Dudes from as far away as Tampa and Cleveland….Frankie and Autumn our little cousins.

More Dude’s:

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This is tough.....

This is tough…..

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And after the walk....brunch around the pool........

And after the walk….brunch around the pool……..

And we ended the race with a dance request….Mike D’Errico wrote “I guess this is how you fight cancer.”

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Putting on the MASK – Radiation

Putting on the MASK – Radiation
The "MASK"

The “MASK”

It looks rather like a coat of armor when you see it for the first time. It is really just a plastic mesh that is softened during what is called your “assimilation” appointment. They form it to your body at the radiation site.

If you have cancer in your head, they form a head mask! That is really much cooler than the torso I think. You could maybe do something with that mask like create some piece of art to hang on the wall. Mine looks like something worn by a super hero, or maybe a gladiator.

On the morning of my 28th and final radiation treatment the girls asked me if I wanted to take my mask with me or if they should throw it away. For some odd reason I felt like I needed to take the mask with me, like it were part of my journey. I couldn’t think of having it thrown in some random hospital trash bin. It was such a big part of my life for the past 28 treatments. So I brought it home in one of those hospital plastic bags that reads….”personal belongings”.

Each morning when I arrived for my treatment I would lay on the radiation table and place my hands above my head grabbing two metal handles. Under my knees, the kind and gentle radiation techs would place a wedge and then they would strap my feet together so they could not move. They would wrap me in a warm white blanket from the top of my legs down, then place the mask over my torso and turn my body ever so slightly with their cold hands until the makers that were tattooed on my stomach matched up to the markers on my mask. (They always apologized for their hands being cold!)

It felt as if I were completely restrained as they sipped the locks on my mask into the table. I thought to myself, if I gained more than a few pounds, they would have trouble getting this to lock, but of course that was not an issue these days. I could not move an inch.

The techs would exit the room asking me if I was OK. They would shoot an X-ray to be certain my organs were in the perfect position to receive radiation. Some days a slight correction would be required and they did this remotely. The table would move a touch until I was in target range.

Once I was in position, the radiation machine would orbit the table twice. There was no sound. A large sign the shape of an EXIT sign, reading “BEAM ON” filled the darkened room with a red glow. It reminded me of something from Star Trek….like “Beam me up Scotty” or something. But I am sure it is just a warning to anyone entering the room.

There was no pain at all. And the only physical effects were some “browning” of my skin and a little swelling and tenderness of the organs internally. While laying there I would tell Jesus thank you for another day of life and another step to my healing while I laid there for approximately 5 minutes listening to Pandora’s “French Cafe” by personal request. (The girls did say I was the only one with that channel choice.)

Then, after the treatment the lights would turn on and into the room they would march taking position on either side of the table releasing the mask and removing the blanket and strap. I was helped to my feet and escorted out of the room.

This day I left with my mask in hand. It was a bittersweet moment, leaving the girls who had helped me kick PC cancers butt. They hugged me and told me they wanted to run into me on the highway jogging, but certainly not back here again. I agreed.

So, my mask and I are still not sure of how we feel about each other. I cannot think of any creative way to make it into something useful, unless Tommy wears it as part of a Halloween costume. Maybe I am a hoarder at heart, but I just can’t throw it away.

Listen for God’s direction and know He examines your heart

Listen for God’s direction and know He examines your heart

Something-good
Often I struggle with messages from God. Are they really from Him? Could the evil one be steeling His secret path into my heart and mind?

A lot of the time it is a serious answer I wait on.

Recently I had agreed to step out of my comfort zone and do something that involved my family and a very sensitive situation. It could easily be misconstrued as haughty and boastful, and my family expressed their concern and discomfort about it.

I wanted to move forward as my true intent was to glorify God and to witness for Him. My family was not buying my explanation. The night before this was to take place I was restless and found myself praying for God to send me a sign, a really clear stop me dead in my tracks sign, if I was not supposed to do this.

The morning sunlight streamed thru my bedroom window and I arose still unsure of what I was doing. But, I trudged forward preparing as best I could.

The day unfolded almost magically. The family was committed and involved and God led us each step of the way.

My confirmation came clearly and in the most remarkable way. Yes, I was to do this. And my reward for taking this leap of faith was a blessing to others. Know that God examines your heart. He looks at your intentions and if they are pure and glorify Him, they are right.

My family also received a lesson that day without me even having to utter one word.

God wants us to show His light through our daily actions. If we have an opportunity to shine, and we do it, even if it is uncomfortable, it pleases Him.

Seek His direction and follow your heart.

Treatment….

Treatment….

You are now cancer free”, declared Dr. Asbun with a huge smile on his face. “The surgical team has done our part and now the rest is up to you.”

World Famous Mayo Clinic - Jacksonville, Florida

World Famous Mayo Clinic – Jacksonville, Florida

We truly believe our mind and body work together in the healing process. We also believe our faith plays the most important role of maintaining our positive attitude and hope for total cure. Surgeons can remove the deadly cells but they cannot control the patients mind. Therefore, it is of the utmost importance to surround the patient with positive support and continuous prayer for strength and continued hope.

The conversation usually always gets around to DX with radiation and chemo patients surrounding us. Tom, my Joseph is usually the one by my side in waiting rooms or comfy reclining chemo lounge chairs. When I share my diagnosis of pancreatic cancer or adenocarcinoma to the medically informed, they are not sure what to say next. According to the American Cancer Society, for all stages of pancreatic cancer combined, the one-year relative survival rate is 20%, and the five-year rate is 6%. I happened to be one of the blessed who’s tumors were operable. Whipple Surgery was scheduled within two weeks of my diagnosis.

There is a definitive protocol for PC and as you can well imagine, the timeline is tight. Whipple resection done laparoscopically is a relatively new procedure. (God certainly knew what He was doing when he moved us 15 minutes away from Mayo Clinic 20 years ago, one of the few surgical teams who perform this surgery laparoscopically.) And, recovery is greatly reduced from the more common “stem to stern” incision which requires a much longer hospital stay and extensive healing from the outside as well as the inside.

Whipple was performed on May 12th, 2014. I was discharged just 5 days post surgery. Recovery was going very well and I was able to be closer to our new Grandson, born May 5th, Jude Garrity. You talk about a reason to live! What a wonderful carrot God provided. And, I must not forget to mention all of my family and friends who surrounded me with support, meals, flowers, cards and most importantly prayers from all over the globe! I would go home on a no fat diet and begin chemo therapy treatment in six weeks.

Suddenly, things took a turn for the worst. 8 days later, I was rushed to the Mayo ER with a fever of 100.4. While this doesn’t sound like much of a fever, my body was telling us something was wrong. I was dehydrated and feeling very lethargic. Tests were completed and it was determined I had three areas of abscess in the surgical site. One was very large. I was admitted and placed on four antibiotics and drains were placed to remove the abscess fluids. I remained in the hospital for 11 days. June 5th I was discharged to home health care for 19 days for twice dailyIV antibiotics and close monitoring. My weight continued to plummet. My appetite was non existent and the food tasted nothing like it was supposed to. This was the most difficult time of my illness. However, the antibiotics did their job 30 days later (June 24th, 2014) I was discharged from home health and off antibiotics. Tom and I took a much needed trip to Hilton Head Health where they prepared non fat meals for me and encouraged me to walk and gain my strength.

On July 11th I began my first chemo treatment…Gemcitabine. The schedule, three Fridays for infusion and one Friday off. August 11th, just one month later, I began my Radiation and 5FU therapy. This consisted of 28 radiation treatments performed Monday thru Friday and the placement of a chemo pump which slowly infused 5FU (Fluorouracil)24/7.

Radiation therapy is actually pretty incredible. Each morning I would arrive at Mayo around 8AM and by 8:15 I was changed and laying on the radiation table hands above my head and my chemo pump resting above my hands. Permanent markers were tattooed on my torso where the radiation needed to penetrate. A special “mask” had been made, a mold really, of my torso which would enable the techs to position me in such a way the radiation would reach the organs of my surgical site. I would be placed on the table, the mask over me and locked into the table. Next the techs would leave the room and take an Xray to determine I was in the exact position I needed to be. Sometimes they would reposition the table remotely. Then the Radiation would begin, a large round scope would circle my entire torso twice quite slowly. I never felt anything and pretty much relaxed while I listened to my favorite Pandora station “French Cafe”. The entire process took maybe 15 minutes. Oh and the techs are angels. Some mornings when I was feeling under the weather they would wrap my legs in a warm blanket and make sure I was comfortable.

I opted to have a Bard Power Port inserted just below my collar bone to carry medicine into my bloodstream and to also allow one easy access for blood-draws. The port is placed below the skin and is about the size of a quarter. It is attached to a small catheter which is placed inside one of the central veins that take blood to your heart. When a special needle is put into the ports’ septum, it creates access to your bloodstream.

The port enabled me to carry my chemo pump with me.

Here I am sporting my new Chemo Pump.....

Here I am sporting my new Chemo Pump…..

I was blessed to not have many of the side effects that accompany chemotherapy. While I do live with nausea and fatigue, both are controlled with Creon, Reglan which I take three or four times daily as needed. And I have not had any hair loss! (Thank you Jesus)

At this point, I have one more radiation treatment scheduled for Monday, September 15th, 2014. I will have four weeks off of radiation and chemo to allow the chemo and effects of the radiation to leave my body. On October 15th, I will resume the “Gemzar” chemotherapy protocol of three Friday infusions one Friday off for three months. My last chemo treatment will be Christmas Eve!

I think I will celebrate being cancer and treatment free with a nice glass of Caymus Special Select, my first since April!

God is so good!

the love of giving…..

the love of giving…..

“If I had the gift of faith so that I could speak to a mountain and make it move, without love I would be no good to anybody. If I gave everything I have to the poor and even sacrificed my body, I could boast about it but if I didn’t love others, I would be no no value whatsoever.” 1 Corinthians 13:2-3

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There was a point in our life when God began to truly bless us abundantly. I believe it came at a time when I gave up a high paying position to stay at home and raise our two youngest children. We had just taken on a huge financial commitment in a new home and really needed my salary. God was leading me to a far more important job, the task of raising two little human beings. I had raised our oldest son on my own and God blessed us that he turned out well. But, I felt differently now about these two younger ones. It worked out perfectly because I trusted God would take care of us. And He did.

We began to share what God had blessed us with. This didn’t always happen consciously. We would happen to fall into circumstances that made us think about helping someone. It really felt good to help others in whatever way we did. Then, we received a gift by our giving. It became contagious. Our entire family became involved and we saw our young grand children joining in. It was a huge transition and we felt really good about it.

Over several years we became involved with a family that needed a lot of help. Even more help than we could provide financially. This made us start thinking about how we could raise money to accomplish what we needed to do. The outpouring of help and support from our friends and our community was amazing. We realized how many generous people we were surrounded by. And, if they didn’t have the money to give, they had other gifts, talents, treasures they could share to help us accomplish what we set out to do.

Over twenty years we saw the generosity of our community first hand. Seldom did anyone refuse to help because our needs were so obvious and so necessary. This generosity extended beyond Ponte Vedra Beach, it included our entire television viewing area.

Recently we have experienced a different side of giving. In late April I was diagnosed with Adenocarcinoma – Pancreatic Cancer. When the Doctor told us she found a tumor in my pancreas everything changed. The most important thing that happened was that we became the recipient of giving. People wanted to help US! Tom and I agreed we would accept whatever was offered. We heard the need in their voices to do something to help. Flowers and cards, special no fat meals, housecleaning, nursing help, offers to drive to appointments or to just sit. It was overwhelming.

What we learned is that giving is the deepest form of love. We had experienced it one side in the past, but now were we seeing it from the receiving side.

God wants us to love our fellow man. He wants us to help those who need help. He shows us HIS love each time we share an act of kindness. We see God’s love in the eyes of those who help us.

When everything around us seems to be terror filled and prejudiced, don’t fall for that untruth. Be the person God wants you to be. Show your love, show His love by giving in any way you are able.

Think how wonderful the world would be if we all did this.