TheBanyanTree: I miss you guys

[Teague, Julie Anna]

I’m so sorry, Dale. Several of us have walked this walk and know how painful and strange and hard it can be to do end of life care. Sending you strength and peace and pain free days for Cindy. 

Julie

> On Aug 21, 2022, at 10:43 PM, dale.m.parish--- via TheBanyanTree <thebanyantree at lists.remsset.com> wrote:
> 
> People want to help, but don't know what else to do, so they bring food.
> All
> 
> of them ask to be called if there's anything they can do, regardless how far
> 
> away they live.  Since Cindy's been put on Home Hospice, there's really not
> 
> much any of us can do except try to keep her comfortable with the narcotics
> 
> we've been given.  And come eat up this excess food. 
> 
> 
> 
> It was an ordeal to move her from MD Anderson Cancer Center in Houston home.
> 
> The Infectious Disease Team seemed to trump the Cancer Team and the Cardiac
> 
> Team in their suspicions that there was an infection rather than the cancer
> 
> causing her high white blood cell count, so we had to stay as long as they
> 
> decided infection couldn't be ruled out.  We ended up with their agreeing to
> 
> let us come home provided that we continued to infuse her through the
> 
> Peripherally Inserted Central Catheter (PICC) line in her arm that extended
> to
> 
> her heart.  This is to keep the concentrated antibiotics from burning the
> 
> smaller veins of her hand and arm, getting the blood mixing at the superior
> 
> vena cava just above her heart.  The antibiotics (2) and one antifungal came
> 
> in refrigerated pressurized bulbs. The large bulbs she got three times a
> day,
> 
> each having to be brought to room temperature by removal from refrigeration
> 12
> 
> hours prior to infusion.  The smaller bulbs of antifungal had to be removed
> 
> from refrigeration room temperature six hours prior to infusion, and the
> last
> 
> antibiotic was in a large syringe that only took two hours to bring to room
> 
> temperature, but required manual injection over a period of two minutes.
> The
> 
> PICC line had to be flushed before and after each of the two ports were
> used.  
> 
> 
> 
> The entire kitchen table was taken over by other medicines, including two
> 
> injections that had to be made into her stomach daily.  Long-term morphine
> 
> twice a day and short-term morphine when she requested it for pain, as many
> as
> 
> four times a day, plus drugs for nausea, vomiting, diarrhea, constipation,
> itching,
> 
> rashes, antihistamines, anxiety, water retention and I'm sure I'm forgetting
> 
> 
> others.  
> 
> 
> 
> Cancer of the bile duct, or cholangiocarcinoma, has very few symptoms prior
> to
> 
> stage IV, by which time it has usually metastasized into the liver.  Cindy
> had
> 
> been losing weight, which pleased her, but the pain in her side sent her to
> 
> the doctor in January, and the first week of February, they hospitalized her
> 
> for a biopsy to the lumps the C-T scan showed on her liver, which came back 
> 
> cancerous.  
> 
> 
> 
> We were welcomed into the MD Anderson Cancer Center in Houston by
> 
> self-referral, and I was amazed by the attitude of the personnel in that
> 
> complex.  The campus is huge, each addition going higher than the last, and
> 
> interconnected by a number of "sky-walks" between buildings and parking
> 
> garages.  Almost anywhere you stopped and looked lost, doctors, nurses,
> 
> technicians, custodial personnel or returning patients would stop you and
> ask
> 
> if you need help finding someplace, and more often than not, turn around and
> 
> lead you to your destination, whether near or far.  Everyone helps everyone
> 
> there. After being put on chemotherapy for a month, Cindy was asked if she
> 
> would be interested in participating in a clinical trial for an experimental
> 
> drug for cholangiocarcinoma.  She consented, and was taken off chemotherapy,
> 
> and we returned for some screening.  After the initial screening, she was
> 
> prescribed the experimental tablets to take once a day, and we returned
> after
> 
> a month for a secondary screening, but she was dehydrated, and they
> 
> hospitalized her to infuse her with fluids.  After three days, we were in a
> 
> discharge conference when she cratered-- both blood sugar and pressure
> 
> bottomed out, and her white blood cell count shot up, so instead of going
> 
> home, we were sent to ICU so they could monitor the concentrated antibiotics
> 
> after the PICC line was installed.  For two more weeks, we stayed, trying to
> 
> locate the source(s) of infection, to no avail.  She was worn out from
> having
> 
> vitals taken every four hours and medications administered around the clock.
> 
> 
> 
> 
> We're now home again-- MD Anderson advised that she hadn't responded to the
> 
> chemo and was unable to continue the clinical trial, and the best anyone
> 
> can do for her now is to make her comfortable in her remaining time.  
> 
> 
> 
> She weakens daily.  I'm thankful that her daughter Carrie is staying here to
> 
> help me care for her, and for her son-in-law, who takes their children
> 
> back to Shreveport each Sunday afternoon to care for them until Friday
> night,
> 
> when the three of them come back to visit.  Cindy was so upset to know that
> her
> 
> grandkids--at least the baby-- won't really remember her, and cherishes the
> 
> weekends with them.  
> 
> 
> 
> I get asked how I'm doing.  I'm doing one day at a time.  I don't look
> forward
> 
> to much now except having a good blood sugar each morning (less and less
> 
> frequently), and for her not to hurt much.  We keep a log on the kitchen
> table
> 
> of when each type of morphine was administered, and keep the antidote handy
> 
> for any overdose reaction.  Other than that, I'm doing fine.
> 
> 
> 
> Hugs,
> 
> Dale
> 
> 
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