Hospice Patient and Its Misconceptions

For those of you out there who I haven't been able to reach out to recently, things have been pretty hectic in the Love/Olafson household due to my health.  A series of infections led me to become one of the latest in a long line of cancer patients to become a hospice patient. If you are like me, you may not even know what in the world hospice means exactly so here is a dictionary definition:

a. a health care facility for the terminally ill that emphasizes pain control and emotional support for the patient and family typically refraining from taking extraordinary measures to prolong life.

b. a similar program of care and support for the terminally ill at home.

I fall into category b of that definition.  There are many misconceptions though that come with the word hospice and the largest is probably that people instantly think of death.  I am not dying yet.  Just had a pretty tough week that led MaryEllen and I to re-think some of our options.  One of those options was taking a break from the rigors of chemotherapy and start taking advantage of the benefits of hospice.

(Garrett says he is too lazy to finish this post so this is MaryEllen picking up where he left off!)

We headed into the hospital in the first place because Garrett was feeling weaker and having hard time breathing.  After ten days receiving multiple blood transfusions and antibiotics for pneumonia and staph infections, Garrett is feeling better, but still has some shortness of breath.  We made our escape last Monday after learning about all the services hospice could offer and making a plan with their team to keep G safe and comfortable at home.  Waiting for us at home on our planned return day was an oxygen system, hospital bed and scheduled visits from hospice nurse to support me, Garrett and our families.  Hospice does not provide curative treatments, but they manage symptoms and are available to counsel us at all hours of every day.  Some people with terminal illnesses do get stronger and live longer that expected with the great care of hospice and can return to cancer treatments when they choose, this is what Garrett hopes to do.

We are very happy to be home and to know that we don't have to go back to the hospital because we have such great resources here!   

Dinner and a movie!

While Garrett is on the mend, I had a wonderful day turning 28 years old!  We've been partying while Tommy is visiting us and last night we all three made it out to Garrett's first in-theater movie in years... I can't even remember the last movie we saw in the theater... maybe it was before his diagnosis in 2006!  We saw The Other Guys this time and thought it was pretty funny. Good times.

On the topic of mending Garrett... we did get a call last Friday with results of the skin culture and started on an oral antibiotic and topical antibiotic cream to fight an infection going on, but luckiy it was not MRSA this time!

Infections

Cancer patients usually are at greater risk for infection because some chemotherapy drugs, cancers in bone marrow and radiation treatments cause neutropinia - low white blood cell counts - that means fewer immune system fighters.  Luckily during Garrett's adria treatments his white cell count remained strong.  We try not to let infection risks keep us from spending time with friends and family, especially when  his counts are so strong, but instead we try to remember the common sense ways to reduce spreading bacteria and viruses - hand washing and sanitizers, covering coughs and not sharing food...  ways that everyone can behave to avoid the cold and flu season!  Amazingly, Garrett does not seem to catch much even when I have something, but when he does it is usually a doozy or multiple issues compounding his symptoms.

The last time we dealt with infection was December 2009 when Garrett was very low on red blood cells and had to be hospitalized for three days.  At the hospital his skin ulcer was cultured and it came back with two strains of bacteria, one of them (we found out much later) was methicillin resistant staphylococcus aureus (MRSA) which has been discussed in the media lately for spreading in hospitals.  Although it is a tough bacteria that is resistant to some antibiotics and disinfectants, it can live on our skin or in our nasal passage without causing any trouble for years even.  When someone is neutropinic and/or has an open wound the bacteria can get in and cause real trouble.  Luckily hand washing is one of the most effective ways to not share the bug.  In December Garrett got several days in a row of Vancomycin, a powerful antibiotic that is used when bacteria is found resistant to others.  This cleared up Garrett's symptoms, along with blood transfusions, got him back on his feet. 

During our inpatient transfusion last Friday we learned more about MRSA and how nurses are supposed to wear disposable gowns and gloves when in a patients room with a history of MRSA...  some nurses did, some didn't...  and in all the times we've been in the hospital for transfusions since December this was the first time they tried to address it.  On the 3rd floor where cancer patients check-in it should be a high priority since many are neutropenic, but the night shift wasn't so concerned this time.  I followed up with the infection control department and they gave us a lot of information about getting cultures, washing hands and giving feedback to hospital staff on how to better educate patients like us.

When we discussed Garrett's current symptoms with his doctor this Wednesday he took a new culture of his skin ulcer and saw signs of thrush (a fungus) in his throat.  With a prescription to treat the throat and waiting to hear results of the skin culture, Garrett should start feeling much better and be able to eat and drink without the discomfort he has had the last few weeks.  Hopefully that will get us back on track, gaining weight, feeling good. 

Also, we got a call with the echo results - his heart looks as good as ever!