Jaundice has Kicked In

A couple of days post 3 month diagnosis I noted a yellowing of the skin on my face and a bit of jaundice in the whites of my eyes. The onset of jaundice for those not seeking chemotherapy portends a life expectancy of 1.5-2 months which I guess is line with original expectancy of 3-6 months.  Affects of jaundice did not take long to appear, twice since I have awoke at night vomiting.  No warning,  just explosive vomiting, and the second time mostly clear liquid. To me violent vomiting is preferable to possibly aspirating vomit while sleeping, which can be life threatening.  Then during the day (9/19), I had excessive sweating, or hyperhidrosis.  Just dripping in sweat from everywhere regardless of room temp. For pancreatic cancer victims a possible sign of diabetes 

Yesterday, Saturday, I awoke feeling sicker than I ever have.  It was just not pain and delirium and nausea, but an awful indescribable feeling of sickness.  What my 40 yr old son best described as the bad flu with the worst hangover of your life.  For the first time, I actually felt like I might die.  Which is awful, not dying, but feeling that bad while doing it.  I should have gone to a critical care clinic to have my blood checked to see what was out of whack.  This is a major oversight, but I was so out of it and because I am on hospice care it never occurred to me.  Hospice addresses pain, but not much else from my experience.  So I suffered through and began to feel better in the evening and even my appetite returned.  Fortunately or not, my son and 2 grand daughters were here for a visit and that took my mind off of the suffering and I did nothing. 

So today, I am back to just feeling generally bad with usual abdominal pain, which is good.  No delirium, sweating, or nausea.  I guess my take away from this is even if you are under hospice, seek medical attention in case it is something that can be addressed with IV fluids. No one should feel that bad.  I have scheduled labs for Tuesday.  Will also get liver enzymes and bilirubin checked. Until now bilirubin has been normal, but I am sure that has changed.

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. 

Three months now. Am I at the halfway point? Feeling like it.

Officially just reached 3 month post diagnosis with stage IV terminal pancreatic cancer.  As you may recall, the average survival for those with out chemo is 1-6 months.  I did get one dose of chemo to see if it was tolerable, and found it not to be.  I reasoned I could double my life span to one year, but realized the quality of that life was going to be pretty miserable.  So opted for a shorter life span with many more quality days I could spend with loved ones. I'll try and drop in some pictures from the last 3 months to document those wonderful days.  

My experience with PDA (Pancreatic ductal adenocarcinoma) may be or not be typical. I wish I could say, but there is just not enough that has been shared. Which is one of the reasons I am documenting my experience.  I have had many more good days than bad, but am always dealing with the pain.  This is where Hospice come in to keep your pain at bay and they do an excellent job at this.  Additionally they treat some of the common PDA symptoms like nausea and diarrhea.  I am leaving off constipation as it has not been an issue for me.  Again your experience could differ.  93% of PC patients suffer from the same call line, but there are many variables that could make your experience different from mine. 

Mine started in the head of the pancreas, quickly spreading through both lobes of the liver and into the lymph nodes.  It is my understanding that if yours started in the tail of you pancreas you likely suffered from back pain as well.  This is because the tail of the pancreas puts pressure on your spinal column. 

I'll tell you the meds I have found effective in controlling the pain and other symptoms.  Diarrhea can really ruin your day and evenings.  So controlling that has been critical.  Food just passes right through so I take a pancreatic enzyme called Pancreaz with every meal.  I then take a med called Lomotil which slows down the GI contractions.  I also eat small amounts of food at one time.  Getting of track with any of these will wreak havoc.  Another common problem with PC is a lack of appetite.  There are different meds out there to increase your appetite including marijuana.  However, I have found that 2mg of dexamethasone, a steroid works effectively.  Eating just a little too much will upset this balance at this stage. 

For pain it is mainly oxycodone and morphine.  They will start you out at low doses and slowly ramp you  up  as the disease progresses and becomes more painful.  A pain of 2-3 is tolerable for me, but having had a 8-9, I can assure you want to stay as far from this as possible.  I was started on 5 mg of oxycodone and 15mg of extended relief morphine.  The idea is to control the pain with morphine and use oxycodone for break through pain.  I am now on 60mg morphine 3 time a day and oxy of 20mg. Usually my pain levels are a 1-3 with this regiment.

I feel I might be different (lucky) in the following ways.  Despite having the cancer in my liver, I have had no jaundice or fluid build up in the abdomen known as ascites.  It can also spread to your bones which is very painful.  I have seen no clear signs of this, although I do experience muscle pain in my legs and frequent superficial plebitis.  Another unfortunate destination is the brain.  Because Hospice is just palliative care you do not get scans for its spread. But I have noticed how badly my spelling and grammar have become and a general decrease in my intellectual capacity and recollection. As long as I feel I can make some sense and be of some help I will continue with these blogs.