TheBanyanTree: I miss you guys

[Monique Colve]

I'm so sorry Dale.

Monique
Sent from my iPad

> On Aug 21, 2022, at 7:43 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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