Joe’s Story

Site created on February 11, 2024

Welcome to our CaringBridge website.  I certainly never thought I would be using CaringBridge or for that matter social media to share that I have pancreatic cancer, but it will certainly help keep family and friends updated.  We appreciate your support, words of hope and encouragement, and always your PRAYERS. Thank you for visiting.

Newest Update

Journal entry by Joe Huley

HI, I hope each of you have been doing well since my last update, I know I have.  Your continued PRAYERS, thoughts, cards, letters, notes, praying rocks, crosses, sweets, treats, meals and SMILES have all been SO APPRECIATED. 

Today, it's been exactly 9 weeks since the Sunday night at 11:30pm the emergency room doctor shared "you have an image on your pancreas".  I can't imagine how many times I have shared the story and also how God's hand and has been with me, Elaine, our family and friends and so many others including you with your prayer and support.  From 11:30pm on Sunday, February 4th it took:

  • 2.5 days to get my lab work schedule and completed including an endoscopic ultrasound, biopsy and blood work, 2-3 weeks average, then, 
  • 1 day to get my lab work results returned, 2–4-day average. 
  • From Sunday night, 4.5 days to be admitted to MAYO Oncology
  • From Sunday night, 24.5 days to first Chemo Treatment 
  • My weight Sunday night was 250#, my weight after on my 3rd treatment was 229#.

I have officially completed the first 3 of my Chemo treatments and have 3 left in this phase of my treatments.  Quick review, #1 so far has been the worst, but after learning so much of what I was doing wrong f #2 was basically a smooth sail.  Day 1 was the same as each of the next 6 or 7.  There were a couple days that I might have felt, a little for a few hours, but maybe more rest, water, or just a few odd hours was really easy to just deal with it. 

MOST important I have not had any nausea, which unfortunately all too often many chemo cancer patients experience, and it can be brutal.  

One of my chemo drugs does cause neuropathy, which is sensitivity to cold, mostly in your fingers and feet.  I started noticing it right after my first treatment when trying to pick up a large glass jar in the refrigerator and needing a hot pad as it was like a block of ice.  I also have since only been drinking fluids at room temperature.  This didn't change much with my second treatment but after #3, watch out.  The accumulative effect increased significantly.  We enjoy a lot of fresh fruit with our meals and one day, blackberries right out of the refrigerator, I popped a couple, and they were like little balls of dry ice bouncing down my throat.  I also now wear a very light weight pair of gloves at night or during my daytime power naps to keep my fingers warm.     

Speaking of power naps, I set my phone alarm for 34 minutes and I typically get a solid 24-28 minutes of rest before that alarm goes off.  I also am sleeping really well almost every night.  But both these are not enough to counter the cumulative impact of #3 on me.  It's not only just being tired, but individually or combinations of stress, conflict, disappointment, not being able to focus or get back on track, losing my train of thought or correct word I can easily and quickly become frustrated and have a short fuse.  Fortunately, I have awareness of this, and being careful to not put myself in these situations can help, but sometimes life just doesn't rollout that way.  I'm grateful for Elaine's help with this as well as reminding me the Oncologist shared how tough and critical the first 3 treatments will be.

A WONDERFUL POSITIVE in this update is that my genetic testing came back and there is NO genetic correlation with any cancer currently known to man in my body's genetics!  Thanks Mom and Dad!

The other good news is we leave Tuesday for our 45th wedding anniversary on a 2-week cruise.  We have been planning this for over a year and it originally included another 4 weeks in Spain, but we will do that portion sometime in the next few years. 

We return home late Wednesday the 24th and have treatment #4 on Friday the 26th followed by multiple tests and scans on the May 1st and 7th and follow up meeting with my Oncologist.  On May 8th, a meeting with my surgeon and #5 treatment.  During those we should also learn when the final #6 chemo will be and what the plan is and when the next phase of 5–6-week chemo and radiation treatment will start. 

I need to wrap this up because even though my hair has never grown so slow, I do have a haircut scheduled tomorrow morning at 11  .

           

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