So Happy to take care of last remaining detail, The Funeral Arrangements

 

Hi All.  Hope this finds you all well and happy.  So it has always been my preference to be buried vs cremation. My favorite and oldest, most beautiful memorial garden in Pinellas County has been able to accommodate me. 

It is called Sylvan Abbey on Sunset Point Road in Clearwater.  Beautiful place with thousands of mature Live Oak trees dating back to the 1800's.  I have selected a plot and the very hard to get upright headstone.  There will be no mournful, boring gravesite funeral.  I will be buried with out fanfare.  After the burial a "service" will be held at Sylvan Abbey funeral home.  Room can accommodate plenty of people and my older son Ryan Hearn will be the MC.  Music of my choice will be playing and pictures of my choice playing on tv screens.  There will be tables/chairs etc and a lectern and microphone.  The purpose of the service will be for friends and family to say any final words they wish.  There is no limit on the time, but hopefully it will not drag on. LOL

Immediately following the service there will be a celebration of life at my favorite beach bar in Clearwater called the Palm Pavilion.  Programs from the service will get people all the free food and drinks they wish without limit at the bar and grille.  Hoping to time it right so folks will be there at sunset.  Due to Covid they are not accepting reservations for private party rooms, but people can take up places where ever they wish and feel comfortable.  There is usually live music there.  I want everyone to have a good time with no sadness.  I have had a full and wonderful life and please celebrate that.

Love to all 

 Introduction to My Hospice Experience

So after telling Oncologist no more chemo, I was discharged and referred to hospice also called Empath.

Got home from oncologist on Weds after noon and was no sooner here when I got a call from Hospice.

They wanted to send out an "intake" nurse to the house to evaluate me for entry into the program.  One was scheduled immediately for the next day.  A lovely lady (RN) came out to the house. She was herself a survivor of breast cancer and lymphoma. She explained the program to me.  They would come to me for all visits, they would supply everything I need going forward at no charge.  This included meds.  She recommended a prescription strength Senna-C for constipation as the pain medication causes it.  Told her I wished for an anti-anxiety med and pain med.  She recommended Ativan and oxycodone which I agreed to.

Later that same day some guy cam to my door with a small bag of those drugs.  Amazing!

The following day, Friday I had my first visit with the care nurse.  It was a very nice male nurse, new to Hospice, who most recently worked ICU at local hospital, but left after they made staffing changes.  My friend, Karen, suggested I get weekly visits vs biweekly, the minimum I had wanted.  He explained that the visit schedule was set by assessment nurse based on what they decided was needed.  Which is just fine with me.  

The whole experience blew me away with their jump to action, professionalism and compassion. I just can't say enough good things about hospice.  Rather than go to the hospital for out of control symptoms they provide care centers fully medically staffed with private home like setting rooms.  They provide free transportation and you get discharged home after crises is resolved.  If I never have to see the inside of a hospital again that is fine with me. 

It is my hope to die at home.  Hospice will provide a "hospital" bed when and if the time comes.  I feel like I have all the armor and care I need going forward.  A comforting situation.  I'll make further entries to my blog to describe any changes and my experience.  Love to all!

 Refused Chemo, Transitioning to Hospice Care

Yeah, so chemo is too debilitating and you feel at death's door for 6 months.  Ain't worth it for me.  Saw my oncologist today and he does not handle palliative care, so was transferred basically to "hospice".  A bit comical bc I feel fine.  But Pancreatic Cancer is considered terminal of course with a life expectancy of 6 months or less.  Three months with no chemo is average.  But meanwhile I can enjoy life to its fullest until I can't.  Have a great support system and hospice care will come to my home and all expenses are paid by Medicare.  Long live Medicare!  lol I'll keep you all posted. 

 Stopping the Chemo

Ok, so it has been abundantly clear to me that the pain/suffering and risk of chemo is not worth the few extra months of life it may provide. Stage IV Pancreatic cancer is a death sentence and there is no cure.  I had one treatment (sitting in an uncomfortable chair for 6 hours) only to feel sick as a dog for a week.  It depletes your bone marrow killing of needed white and red blood cells. Makes you vomit and have the unrelenting runs.  Causes debilitating fatigue, just when you need your energy the most.  The only reason I chose it was to make it to Eric's graduation in June.  Now that feels rather arbitrary everything considered,

So for me, chemo is just not worth it.  I rather live 3 months with some quality of life than 8 months with none.  Trust me I will wring out every bit of joy from life that I can. lol  I will have medical support and palliative care to reduce pain and complications.  I have a loving support system and all end of life decisions are about made.  So soon I will be on a glide path to the ultimate transition.  I am so grateful for the wonderful life I have had and am prepared for the end.  I know my decision is not for everyone, but it is abundantly clear it is the best one for me. 

 FIRST CHEMO TREATMENT for PDA (Pancreatic ductal adenocarcinoma) Stage 4 on December 9th.

So it was on Weds December 9th at my Oncologist's office.  The office is called Florida Cancer Specialists and Research Institute.  My oncologists name is Dr. Jooma.  Cool younger dude.  Recommended using pot.  Okayed my personal use of large doses of Turmeric.  The only alternative with some scientific support.  Test done in "test tubes" or in vitro.  Anyway, when they mixed Curcumin, active ingredient of Turmeric it killed of the pancreas cancer cells.  So there is that for whatever it's worth.  But worth a try in my book. 

Anyway, I reported to my first day of chemo full of nerves, but with trusting openness at 8:30 am.  Treatments were non stop for 6.5 hours.  Bummed about the recliners, were hoping for something more comfortable.  Nurses were great, patients even better.  Room full of cancer patients gathered in the front, so I went to the back where I could sit with no one on the sides and view of the TV.  News not allowed because it is too controversial.  Shame.  I hate game shows, LOL  Like only 3 men and 20 older woman.  Overheard some great stories about some of the cancer patients and how they are giving back. Very supportive group.

So probably the worst immediate side effect was from Oxaliplatin. A Platinum compound, a valuable heavy metal for fighting cancer. But weird side effect is that you can not eat/drink cold things, a sensation likend to swallowing crushed glass.  The Iced tea I drank at arriving home at 4PM confirmed that. LOL  And you can not touch anything cold without gloves as it is like pins and needles in your hands x5.  Just weird and pretty drastic change to my diet.  No cold drinks, no beer, no ice cream.  And ice cream was going to be on my to do list.  Hopefully it goes away but not the worst thing,

When I got up after finishing the "cocktail", my legs felt like noodles and I was kinda in a fog, but no pain or discomfort worth mentioning.  Was so looking forward to going home.  I do not do waiting well.  I bought a new Kindle book to read, but have a new phone, one that is more reliable, but no Kindle access.  So I figured out how to reorder the book on my new phone.  The title is "I Catch Killers", by a storied Australian Homicide detective.  Sounds like an easy, entertaining  read.  I'll let you know lol

Earlier I had an endoscopic procedure  to biopsy the tumor.  At the same time he offered to attempt a nerve block which very well may have helped me to reduce the  abdominal pain.  It's short acting maybe a month.  But also have tramadol  for pain.  So far pretty good with minimal pain.  

So 11 more left of those oncology infusions spaced 2 weeks apart.  God I hope it does not get boring, because boring and waiting are my dual nemesis. But of course I will follow through to the best of my ability.  The remaining sessions I will not likely blog about unless something interesting happens.  Hope you found this of some interest.  The Blog is really for people like me facing stage IV cancer, now and those in the future.  

Finally the Treatment Begins for my Stage 4 pancreatic cancer

 Ok, so I have a bit of catching up to do.  My biopsy was done last Tuesday, but I did not get results until this Monday, Nov 30th.  As anticipated, and is true in 93% of cases. it is the bad kind which is called PDA. Pancreatic Ductal Adenocarcinoma.  I prefer the older acronym meaning public displays of affection. lol

It is quite advanced and a common tumor marker Ca19-9 (blood test) was done.  0-37 in normal.  Mine was 37,000.  The highest level I have seen in literature.  Lucky me, a record holder.  This test will be repeated many times as my treatment progresses as it is an indicator of the success of chemotherapy.  The way I look at it, is mine is so high that can only go down. lol

Next Tuesday, Dec. 8th I get a 'port" installed on my upper chest to access a large vein in my neck. Through this chemo will be given and blood drawn on into the future.  Tuesday afternoon I get a CT scan of my chest and abdomen to determine the extent of metastasis. I all ready know it has spread through out my liver.  I am not expecting good news based on my high Ca19-9 level.  

Then the next day, Weds. I get my first 4 hour infusion of four chemo agents.  In case you are interested the protocol is called FOLFIRINOX.  I have selected this protocol because it is the most aggressive therapy.  It also is the one that makes you the sickest (natch). Every 2 weeks you get a four hour infusion for a total of 15 infusions if it can be tolerated and doesn't kill you.  That's at least 30 weeks of treatment or around 7 months.  Hopefully this treatment will extend my life so I can attend my son Eric's HS graduation in June. 

Remember I said before if you get no treatment life expectancy is 3 months.  I've all ready used up a good bit of that time patiently waiting for the insurance approved cascade of ever more expensive diagnostic imaging. Things would have been very different if my GI doc had ordered a Ca19-9 early on when I first began experiencing symptoms in August.  But I am trying not to look in the rearview mirror.     

I'll let you in on a little inside joke. A number of you have called this disease insidious and rightly so.  Because it is not me I have given this cancer the name Sid, as in inSIDious.  Of course I hope for the very best outcome, but I am realistic as the deck is heavily stacked against me. I am taking the time to get my affairs in order and spend time with as many of my loved ones as is possible.  I've taken some pre-chemo photos and really don't look any different. (still fat). As I say every day, "today I look as good as I ever will." lol  I am still eating and sleeping well.  Enjoying everyday and spreading the love.