My Shit's Fucked Up

That amazing grace
Thought it passed you by
You wake up every day, and you start to cry
You want to die
But you just can't quit

 

The little bastard in yellow is causing the problem. I have been journaling off and on on blogger since before Leiney was born. Until December or January, I never went back and looked at postings.  Even now, I do so sparingly.  Today, reviewing a post from February 2008, I learned that the research I have been doing on Jenny's cancer is the same behavior I engaged in when my mother had ovarian cancer.  Attendant with that research is my tendency to latch on to the worst case scenarios. To be clear, Jenny has stage IVb pancreas cancer.  That means it has spread outside of the pancreas to distant organs.  It's on her liver.  She has a 5% chance of surviving 5 years after diagnosis.  She was sick in October of 2019.  It became unbearable in late May of 2020, when she lost 25 lbs. in a month.  I had been asking her to go to the hospital, but the morning she put her jeans on and pulled them out and they clearly looked 4 sizes too big, I begged her to go.  When she would complain about loss of appetite and nausea, I would tell her she needed to go to the doctor. Because it was COVID-19 school days, she complained she had no way to get a sub and had to write sub plans and her students needed her and on and on.  Frankly, by the time she had symptoms, it was probably already metastatic. This disease is generally silent, fast, and deadly.  I just looked up the five year survival rate for stage IV b pancreatic cancer.  I expected to see 5%.  Instead, according to the latest data:

Distant (Stage IV or Metastatic) Survival Rate

The five-year survival rate for distant (stage IV) pancreatic cancer is 3%. Distant disease has spread to other organs outside the pancreas, usually the liver or lung.

https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2021/cancer-facts-and-figures-2021.pdf

Compare that with the 49% 5 year survival rate for stage IV ovarian cancer, another silent and insidious cancer, and you understand how fucked up this is for Jenny, the kids, the rest of our family, and me. 

Only about 20% of people who get pancreatic cancer get it soon enough that there is a chance to interdict.  Even then, most of those people die anyway, and buy maybe a few months to a couple of years. Moreover, screening doesn't help to lower the incidence of death from the disease.  Jenny's tumor is located in the uncinate process, which is at the bottom of the head.  As Wiki tells it, 

" [the uncinate process is a] small portion of the head of the pancreas that extends to the back of the superior mesenteric vein and ends at the superior mesenteric artery." 

The tumor is poorly defined, I believe, which is bad, and also is wrapped around both the superior mesenteric vein and artery.  If the tumor invades the artery or the vein, it can cause digestive problems, but it is unclear whether that has happened. She also has cancer metasteses in her peritoneal lining, the sac that protects internal organs, and she has necrotic lymph nodes, indicative of the cancer being in those nodes.

We are doing everything within our power to save Jenny--not just relying on chemotherapy.  I found her a cancer coach, who costs more than 16k a year.  The coach, who resides in NYC, has survived stage IV of the disease for better than 20 years.  I learned from Jenny last night, that she takes chemo drugs even now. Jenny takes loads of THC sent by her billionaire childhood friend; takes supplements recommended by a friend who is a naturopath; takes a foul tasting Chinese herbal medicinal tea recommended by an acupuncturist which consists of myriad Chinese herbs that Jenny has to brew herself; sees the acupuncturist; gets massages regularly; sees a chiropractor; sees another social worker through palliative care.  She is regularly walking now.  Still, and all, the odds of her dying in the next 5 years are 97.5:0.833.

She suffers from time to time from excruciating nausea and pain.  The nausea is almost in check, although she felt nauseous last night, better than 3 days since the pump was removed.  The pain, which is in her hips and likely caused by the violent vomiting, has abated somewhat, although it isn't gone. The oxycontin, which she is trying to avoid using, didn't work to quell the pain today.  She saw a friend who is a physical therapist and does water therapy in Bellevue, provided her with some relief a couple of days ago, through exercise in a pool. 

Overall, the experience is hellish for Jenny.  There is no way around that. I can't begin to imagine the suffering.




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