Hello to all
our friends and family. It’s been quite
awhile since Brian wrote his “Palliative Care” entry. There have been several times since then that
he’s started to update you on Hospice care, but fatigue keeps getting in the
way. So, I’m stepping in to let you
know that, while he is steadily declining, he is also hanging tough. He sleeps a lot, and is on lots of
meds. There are many uncomfortable
changes that go with liver failure, and the cancer spread to his bones does
cause pain. But he still gets himself up
and around, and we have several comfortable ‘sleeping stations’ throughout the
house. We've had a steady stream of
visitors, which breaks up the days. So
far, the Hospice folks have been quite supportive and responsive to Brian’s needs. They have paid for two individual radiation
doses which greatly eased the bone pain.
He is scheduled to have a third shortly.
Thanks to
you all for your blog comments, texts, emails, phone calls, letters, food,
gifts and visits! It’s really helping us through a tough time. I must give a special shout out to the
families who helped fix our hurricane-damaged fence –it was a fun day, and just
in time to prevent the deer from eating the Spring growth. Thank you!
I must also
say that life is moving along as usual.
Our kids are both successfully forging their way through the school
year. David recently went to his junior prom
and had a terrific time. Vicki just
celebrated her 20th birthday!
Next week, I will help host a senior citizen prom using the junior prom’s
theme and decorations. It just shows
you’re never too old to be crowned a prom royal.
Feel free to
contact us any time. If we can’t answer
right away we won’t; so please don’t worry about imposing but don’t be upset by
a lack of response.
Sincerely,
Robbie
* ADDENDUM: I wrote the above entry several days
ago. Since then, it’s been a very
challenging time. Bri was up with
hiccups for a couple of nights. In that
time he became exhausted, tremendously uncomfortable, and had very little to
eat or drink. Fortunately, the muscle
relaxer Hospice provided seems to have made the difference and he is comfortable
now, but it sure took a toll. The next few days will determine whether he
rallies or not. He is scheduled to have
radiation at the base of his skull, a sensitive area that influences many
important body functions – swallowing, the phrenic nerve (which if irritated
can cause hiccups), clear vision, and much more I don’t know about. If he isn’t strong enough we won’t do the
radiation, which involves several visits to the hospital and has its own side
effects. The biggest problem with the
bone cancer though, has been pain. The
radiation will help alleviate that better than the pain meds can, and may
relieve other problems such as the hiccups and difficulty swallowing. But the radiation won’t help the fatigue and
other symptoms that go along with liver failure. Either way, the path ahead is more tenuous
than it seemed a week ago.
I am glad I
was able to write the first blog entry before the last few days. It shows that even at this point things can
be positive. I will post another update soon. Maybe Bri or the kids will help me craft an
ode to Hospice, or we’ll share the nicknames to his many new drugs.
Please still feel free to stay in touch. It's often a welcome distraction.
RB
