TheBanyanTree: I miss you guys

[dale.m.parish at gmail.com]

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