Rather than try to write a summary of events since arriving, here are a few snips and bits copied from correspondence and facebook posts. They will appear disjointed thematically, but that may be an accurate depiction of the first weeks here while we were unaware of the increasing pressure on her brain from undiagnosed hydrocephalus.
I'm here in Cobble Hill on foreign soil taking care of Terry while she is unable to care for herself. One of my jobs is contacting her friends who will be wondering why she isn't writing, calling, whatever she would usually do to stay in touch. Terry has been quite ill for some time and is just plumb too tired/ill to keep up correspondence with anyone right now.
The cat just came into my room meowing. She has never done that before - usually is silent. I need to put more flea stuff on her - she's still biting and scratching herself so i won't let her stay in my room. The days are incredibly busy here: Terry got really sick soon after I arrived and has been pretty much unable to do much other than be driven to doctor's offices and lie in bed. Occasionally I clean up vomit and once she didn't get to the bathroom on time so I had pee towels to wash. I think I'd rather wash urine-towels than vomit, but i don't get a choice. Some nights she wakes and gets scared about what is happening and she needs me to come in and sit with her. Other times she just wants to talk and talk - and it is getting a bit easier as we learn how to be friends. One time we did hug and cry together - partly just about how hard it is for both of us. Hard for her to let go of being in charge all the time, and hard for me to try to do things her way always even when she is too sick to tell me how to do things her way.
They are not even positive that the spots in her brain are cancer - the lungs are the only place that was biopsied. She has small amount of cancer in the right lung and they do think they will be able to zap it enough that she will have years more to live (like even 5 or 10, I guess) but she has to get it treated soon and the spinal fluid problem has put the whole cancer treatment plan on hold. She was supposed to be getting cancer treatment (radiation) this week, but it is postponed until her brain-fluid-pressure is back to normal. I spen a lot of my time driving her to doctors and washing dishes. Tried to get a blog started but it's hard to find time. One night Alina called at midnight and needed a ride home. I got lost trying to find her friends house (finally did find it) - she had been invited to stay overnight by her friend, but the other mom had not agreed. It felt funny to be going to fetch a teenage girl who wasn't mine.
We had a real scare last week when she became totally disoriented (physically dizzy and mentally incoherent) and I drove her to the city of Victoria three days in a row to the big hospital to have tests and more tests. I have never been here before and she was too disoriented to be any much assistance in navigating the roads or the medical system. We came out the far end of that figurative tunnel with a scheduled stunt implant this coming Tuesday to relieve pressure on her brain from cerebral spinal fluid not draining properly. The neurosurgeon believes she will have rapid and remarkable improvement once that is done.
Already she is better from the lumbar puncture - able to have long animated conversations as she and I compare our very different memories of decades past. Often, though, she will then forget what we talked about - - she has lost a certain sense of time, not remembering whether something happened yesterday, last month, last week or this morning. As I say, she should be back to normal soon (though I did ask the nurse if they couldn't try to make her like she always was instead of just normal ;)
All this has postponed her scheduled treatment for cancer. In order to get her back on track with that, I'll be calling several doctor offices as soon as the shunt is in place. Except for being tired and disoriented and scared about it all, she is in good shape - but totally dependent on having someone here all the time (she gets scared if I'm out walking walking the dog too long)
Tomorrow I'm at the hospital almost all day while Terry gets her shunt surgery. I posted some info about it on your facebook in case you were curious about the surgery. It's interesting.
She is expected to be a lot better when she gets home Thursday. I have got the whole-house vacuum working and plan to do a major cleaning while she is in the hospital. She has asked me to please come visit her on Wednesday, though, so i don't get a whole day off...
Starting to get more people who can help with stuff... or at least can answer questions for me. The doctors and their receptionist/schedulers all know who I am and they are respectful of my questions and concerns. Terry's oncologist has specifically set aside some time to meet me before Terry starts her radiation. I will be changing my return date for sure - the radiation starts the day after I was planning to come home. I'll have a better idea of what date when this shunt is done. If Terry improves as much as the neurosurgeon expects, I will have a lot more freedom to decide what to do.
Alina has friends over tonight. They sound similar to Angelia's sleep-overs but a bit more giggly. Sastun wrote something on his facebook I think you would enjoy. This link might work http://www.facebook.com/theresg?v=feed&story_fbid=1389032170486#!/notes/sastun-phillips/deep-and-dark-concepts-for-the-misinformed/357024302698
Every day there are new challenges, but we are getting more adept at meeting them face-on: calling a doctor's office to have them reschedule a procedure that had been canceled incorrectly, getting the trash out to the curb on the correct day at the right time, getting used to vomit as a way of life, and navigating the local winding roads to find the shop that had such good coffee.
If you have facebook, do join the growing number of Terry's friends who have friended me to stay in touch, get news, and reacquaint with each other. Most days I try to post something about what's happening on the Western Front (British Columbia, of course)
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment