Living with Stage IV Pancreatic Cancer

 

Here I am in Clearwater, FL January 20th 2021  So, perhaps it is time for an update.  Self diagnosed on Friday the 13th of November by a revealing MRI report outlining metastatic Pancreatic Ductal Adenomo carcinoma, the most lethal form.  Truly incurable. 

O. K, les see...it been a bit over two months since I was diagnosed with Stage IV PDA.  Average life span w/out chemo 1-6 months. Or possibly prolonging death for 1-2 years while you get sick as hell on chemoagents.  I guess it makes sense if you need that extra time in your life.  But remember the trade off. 

Just got my big brother Walt down to Florida all the way from Maine and he brought his amazing nephew Greg. We got some great-life in the moment photos of the Hearn Family.  Its so nice to do these important things while you are feeling well and looking still looking pretty darn good. So that was some pretty amazing stuff that unfolded naturally and with love.  

The Hospice Stuff 

With tweaks here and there and trial and error we seem to get things right. Diarrhea was a big problem, but increases of pancreatic enzymes and intro of Lomitol slowed my intestinal activity. Sort of a balancing act between constipation and diarrhea.  My appetite is way off and getting hungry and finding food that appeals is a challenge.  Those close to me said I looked anemic.  I asked hospice if there was something to increase my appetite. They suggested a low dose steroid of 2 mg of dexamethasone.  It definitely helped and I am told I look healthier.

Getting pain under control is challenging.  Hospice always starts you at the lowest dose of everything, so it is a slow weekly process as they ramp up the dosages.  Oxycodone has been the bedrock to control my pain. Started at 5mg every 4-6 hours which I immediately had to double to 10.  I told them this and they increased dose to 10mg the next week.  The pain seems to shift around my abdomen, sometimes centered right over my pancreas, but often as a band of pain across the bottom of my abdomen. Often worse at night when you lay down and definitely bad in the AM when you awake. It takes about 2 hours to normalize.   The next step is to use a longer acting (extended release) pain med that will require twice per day dosages vs 4 times. And eventually permit wakening in morning with out the bad pain. For this they have used tablets of morphine, again at the lowest dose, 15mg.  It goes up to 200mg, but must be increased slowly to avoid side effects.  I am now on 30mg, but awoke this morning with some of my worst pain to date.  I guess as the cancer spreads it is inevitable that so will the pain. I see the nurse tomorrow and expect to be moved up to 45mg.  Again the goal is to just use oxycodone for break through pain and morphine as a permanent longer term alternative.    

 

So I have had six nurses come in to attend to me once each week.  Had the same one twice and believe she is my designated nurse.  Her name is Elena.  I like her, she doesn't pull any punches and lets you know what you are getting yourself into. There is no putting a positive spin on this process.  I'm signed up and am on board for what is coming.  Do I have any other choice?  But I must qualify, I have had a hitherto remarkably easier go at this than most I believe. So grateful.

Hey, I know I am dying sooner rather than later with out chemotherapy, but the quality of my days while alive are so much better.  I am stabilized, get out and about, spending quality time with loved ones.  No chemo side effects and still have my hair LOL.  

I had a visit yesterday with some of the great staff at my large microbiology lab where I have worked part time for 4 years.  Wonderful, dedicated to quality souls. The best of the best.  And they care a lot.  They have really lifted my sprits as individuals and collectively.  To You, your care and support have been awesome.  And to Rose and Nina not sure what your doing ladies, but it sure is helping. I Love You All.

Sometimes I set short term survival goals to keep me going.  Like seeing rump leave office today.  We have been through hell for 5 years watching this man who seems to delight in chaos and seeding hate.  Never thought I would see this in my lifetime.  But it has taught me how precarious our democracy can be and will never take it for granted again. Thank God for the wonderful, strong moral leadership of Joe Biden, who seems made for this moment.  My ultimate goal pushing the survival boundaries is to be around in June for my 18 year old son's HS graduation.  God bless you and my LOVE to all always.