Hospice Update

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 20^th 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