TheBanyanTree: I miss you guys

[Jeri Xiques]

Oh Dale, I am so sorry to hear this!  I’m disappointed that I never got to
know Cindy, but through your writings I know you love her, and she loves
you.
Prayers for her in her struggle that she may be comfortable and kept
pain-free. Strength to you and Carrie as you do what you have to do, and
blessings to her son-in-law for bringing the grand children each weekend.
Please keep us informed as you can!  We care!
Love and Banyan Tree hugs,
Jeri


On Sun, Aug 21, 2022 at 10:21 PM Mike Pingleton via TheBanyanTree <
thebanyantree at lists.remsset.com> wrote:

> I'm so sorry Dale.  It's painful to be too far away for hugs or to bring
> food and as we all know all too well, cancer sucks.  I bid peace and
> strength to you and Cindy and your families.  And hugs anyway.
> -Mike
>
>
> On Sun, Aug 21, 2022 at 9:43 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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