Rehab Center Thoughts & A Chemo Plan

When you're temporarily living in a rehabilitation center/nursing home, which, let's be honest, is a nursing home with a therapy room, you are drained of all energy.  The therapists at the center are excellent but the hours not in therapy drag on, and you're surrounded with people who are almost certain not on the same path to recovery that you are. All of us are carrying bags under our red, puffy eyes and our nerves are on edge.  All of should probably be on some kind of sleeping medicine, because I know it's been months that any of us have slept a full 8 hours without interruption, whether intentional or just restlessness.  I blame a lot of that on the center itself. Nothing "wrong" with it that I can pinpoint, but surely nowhere I'd ever want Mom to be for even a brief time.

So it's been hard to write Braintuna the last week, even though there is actually some interesting stuff going on.

Last week, Mom had an appointment at UT Southwestern Medical Center, probably the best brain care center in  North Texas.  We met with Dr. Elizabeth Maher, who provided almost an hour and a half of encouraging, supportive, friendly discussion. She shows Mom's scans (MRIs and CTs)  and she said confidently that this "cyst" is neither progressive nor dire.  Fabulous words for us to hear!  She said the scans indicated what 30% of patients with Mom's condition experience, leaking of the vessels in the tissue surrounding the cyst.  (She did not use the term tumor.)  The vessels are leaking water, and since the brain is enclosed by the skull which provides zero place for it to stretch out, the fluid pushes into the brain, temporarily squishing the pathways and connections, which is extending the negative impact to Mom's verbal and physical skills.  

The lucky thing about this is that a drug called Avastin works to slow the growth of those vessels so they don't leak water.  And the luckier thing is that Mom was already scheduled to start Avastin treatment after her 4 week rest period after radiation.  Dr. Maher recommended Mom take Avastin and temador.  The combination of these 2 drugs will relieve the fluid pressure and also block cell growth of new cancerous cells.  We are very hopeful for significant improvement after a few treatments like this.  I don't know yet how many infusions there will be, we'll update when we know that.

What we do know, however, is that Avastin itself is terribly expensive and it can't be distributed through the nursing home, so Mom is back at HEB hospital for the time being.  The surroundings at HEB are safely familiar, the nurses recognized us when we arrived, and I for one, felt oddly at home.  I know Mom can't be pleased with her new IV, since she's been off that for several weeks now.  Neither does she really like the bed that self adjusts pressure to avoid bed sores.  But she does like the bed with handles on the sides, that help her push up and shift herself around.  And she does like the Starbucks downstairs in the hospital, she enjoyed a nice hot chai latte that Sara and Macklin brought her this afternoon.  

Strange to feel better at a hospital, where people are really sick, than at a nursing home, where most people are not really sick.  I think that again speaks to the health care problem in America. I feel so sad for the people in the nursing home who had no family or friends come by. It was rare that we saw anyone outside our own family visiting, and we had literally moved into the place, and had ample opportunity.  I'd like for the  lonely folks to have a fresh smelling, private room and bathroom, rooms with showers in them, doors with push/pull instead of turn knobs, working call buttons in the bathrooms, air conditioners with clean filters, alarms that only go off in the event of a true emergency, and nurses who are 100% capable of assisting with lifting and physically caring for their patients.  (I think I'm developing a checklist for next time, if there is a next time, in a rehab center.)

I don't know what the next step is for Mom, but let's hope it's with a walker, right out of the hospital and into her own house.  Time, plus Avastin and Temodar, will help us get there.