TheBanyanTree: I miss you guys

[Theta Brentnall]

My heart aches for you and Cindy.  I know how emotionally painful this 
journey is for both of you.  I'm so glad Cindy gets to have the weekends 
with the grandchildren so they will have a mental picture of her in 
years to come, and blessings on her daughter and son-in-law for going 
the extra mile to ease the pain for both of you.

You are in my prayers.

Theta

On 8/21/2022 7:42 PM, dale.m.parish--- via TheBanyanTree 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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