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.  

 Some Pancreatic Cancer Awareness stats: 

This year, an estimated 57,600 adults (30,400 men and 27,200 women) in the United States will be diagnosed with pancreatic cancer. The disease causes approximately 3% of all cancers. It is estimated that 47,050 deaths (24,640 men and 22,410 women) from this disease will occur this year.

 So how and when it all started or really when did I become aware something was wrong.  The mean time from actual start of pancreatic cancer to awareness is 14 months.  I became aware in August 2020 that something was not right.  I was having a lot of stomach pain that antacids did not quell.  

I contacted my GI doc and scheduled an EGD (Upper Endoscopy).  That was done on Sept 8th 2020.  It showed the usual stuff for a guy with GERD (gastro-reflux disease) for which I take pantoprazole 40 mg. Because there was a little bit of food in my stomach the PA (physician assistant) called it gastroparesis, abnormally slow movement of food through stomach. And put me on Zelnorm. So I was scheduled for a gastric clearing scan on Oct 12th, which was normal.  

So next up in the medical sequence of events was an abdominal ultrasound which was performed on Oct 22nd.  At that point I was expecting gallbladder issues.  Previously, I had my primary doc order an amylase/lipase to check for pancreatitis which were normal. The ultrasound was pretty normal for an over weight 67 y/o. Some fat in the liver and some sludge in the gallbladder.  A small inclusion on the liver was suspected to be a fat deposit, which 25% of patients have.  Still no worries, but still have abdominal pain, which has migrated from the top of my stomach to both sides. The pancreas was not visible on the ultrasound, hidden behind a small bowel loop. 

On November 12th a MRI of the abdomen was ordered with and without contrast.  My healthcare provider Baycare of Tampa Bay permits patients to view their imaging results the next day. This is when I first learned there was big trouble.  Ironically on Friday the 13th.  The radiologist impression follows: "Evidence of a 3 cm mass within the head of the pancreas concerning for a primary pancreatic neoplasm.  Multiple liver lesions which have features that are most consistent with metastatic disease."  My life then instantly changed.  I knew what that meant.  

My Background

I am a 67 year old white male. Was trained in Clinical Lab Science in 1978-79 at Lakeland Regional Hospital in Lakeland, Florida.  A 12 month program under the education of three on staff pathologists.  This was backed up with a BA with a Chemistry Major first and then a BS in Medical Technology in 1979.  I was trained in all divisions of the medical Laboratory and certified by the ASCP.  I currently hold a Florida Supervisors license in all areas of the laboratory (in Florida).  

Most of my clinical experience has been in hospital labs, large and small.  But also spent time working for a reference lab as their week-end-holiday manager (everyone loves you, you are freeing them up to enjoy the holidays) .  Which meant I worked and took care of all other aspects of an active reference lab. 

I don't want to bore you with the lab stuff, but it's just a way to demonstrate some medical knowledge.  And then for good measure in 1999 I acquired an MBA at my alma mater, USF, University of South Florida, in Tampa, Fl. Briefly did sales for Gartner, representing the IBM Hardware Division. Most recently and currently employed by an HCA subsidiary that does large scale Microbiology for 17 HCA Hospitals located around Tampa.  

Living in Clearwater, FL and my Micro Lab is in Largo about 4 miles away.  In my household resides my Fox Terrier/German Short Hair Pointer Sadie of 8 years.  Although very important to me, she takes second place to my now 18 yr old son that stays with me at least 3 nights a week.  He is a Senior at Clearwater HS.  A good student and a wonderful human being, his name is Eric Hearn.  

So there you have my background.  My next post will be about when I first realized something was not right in August of 2020.  Until then...