Terry woke me at 4:15 this morning because she was confused about what time we had to be at the hospital. Luckily she was willing to go back to bed for an hour. It worked out well because when I woke her at 5:15 she was already dressed under her bed-covers. By 5:35 we were on the road in sleet and snow and the thick frost was melted off the windows.
I still don't know what my schedule will be. Haven't figured out how to set up a support system for Terry after i leave. I Have finally started meeting a few of her friends - found phone numbers and made some calls - and dropped in on neighbors who had brought dinner one night last week (to return the dishes) and got invited over for a glass of wine. A retired couple from Holland, Frida and Hans. They have invited me to go hiking with them sometime when i can get away. Another retired lady, Linda, has offered to help me with trash - which has accumulated as you might imagine.
I am really feeling good about my success at getting Terry's bronchostomy rescheduled for today. I was very firm and unrelenting in my insistence that they needed to correct the error in scheduling and it worked! One procedure DONE and over with. They took a biopsy of lung tissue and snaked a camera down to look around. results will take up to two weeks. We should know something before that, though. The doctor said her lungs "look good" whatever that means.
Someone brought ice cream while we were gone, so I'm going to have a bit and then go to bed. My weight is holding at 121 with all the hikes up the mountain and lots of busy days.
It is quite an adventure. I'm going to try to get more written about it in my blog.
Terry has mellowed as she has been feeling better and is more aware of how much work I have done to get her past last week's crisis. She was totally out of it for a while - loopy as a ball of yarn. She is thinking better now than at any time since I got here. Once the shunt goes in to relieve pressure on the brain, she should improve even more. Then they can go back to attacking the cancer.
I'll try for an earlier night tonight - here's hoping no midnight call wakes me again!
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This morning Terry is in the kitchen, fixing herself breakfast, chatting merrily to Cybele and quite rational. It is hard to believe that the last few days she was incoherent much of the time and unable to get out of bed except to hobble drunkenly to the bathroom and out the door, and get lost in her own front hallway. I doubt that Cybele would believe me if I told her of the change.
Cybeble and i did share a few minutes on the phone last night (while we were still in Victoria and she had arrived at the house already) and she cleaned out the fridge before we got home. Terry had snapped at me every time I tried to clean out the rotten, blue-mold grapefruit halves and unnamed melange of goop in numerous unsanitary containers. Cybele agreed with me that it will be easier for her to get away with stuff because Terry really wants to have a good relationship with her step-daughter and will be less critical of what she does.
Just answered the phone and got her new schedule of appointments. The need for a shunt to help spinal fluid flow has altered her radiation schedule so I may be lucky enough to come home as originally planned if I can set up some other support system with her friends.
This morning the internet did finally load all my emails, so maybe whatever was wrong is now working properly.
Joni Mitchell is singing somewhere in the house - Each day we've been in hospital waiting rooms, ER, Dr offices, Terry and I have remembered songs from our childhood (banana boat song for one) and sung together for our own entertainment - not minding if others wondered about our sanity. So there are some good, fun, times, too. Our voices sound really good together. There must be something about genetically similar vocal chords. You and I sound good together, too, so maybe it's just my natural superpowers!
Sastun is resetting the internet so this can send in a minute... maybe ....
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I try to put some kind of update every day in facebook since a lot of terry's friends are checking there. Terry is much more lucid today than she has been since I got here. She has just today realized that she really is dependent and that she needs to concentrate on her health instead of worrying about details. Tonight she said she wants to give me power of attorney in case something goes wrong during Tuesday's procedure. And just to take some worrys about decision making away. I'm glad I waited for her to bring it up. Tomorrow we will find out how it is done. We had a small outburst one day when I told her I was really trying to do things her way but it wasn't easy and she and i both cried and i went and put my arms around her and said "It's not easy, but we are going to do it together; we are going to make this work" It has been better since then.
For a few days there, it was hell - not having any phone numbers or contacts and just driving her to the city every day until they found what was causing her sudden downturn. Her spinal fluid is not flowing as it should. Once the shunt is in place in her brain and the spinal fluid can flow and get down to normal level, she should feel a lot better and be able to think more clearly. Already it is better since they did the spinal tap. Interestingly this is not related to the cancer as far as we know. This is just a separate issue - unless there is a tiny lump right in the way of spinal fluid flow. It has delayed everything though. All cancer treatment has been postponed until this shunt is in place. She will be in the hospital two nights, so i'll have one day here to get the vacuum running and the freezer cleaned out while she's gone.
I was all ready for an early night and then Terry called out and i went in and we talked until it was late. It is good, because we settled what needs to happen tomorrow, but I lost my chance at an early night. She hardly sleeps at all. The steroids keep her hyped up and she is up most of the night. Since finding out what was causing the mental confusion and disorientation she has been less scared and doesn't wake me at night as much. I have decided I prefer cleaning up a pile of pee-soaked towels rather than vomit. Unfortunately, Terry is unable to cater to my preferences in that matter. She offers whichever entertainment her body provides at the time.
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Terry's unexpected sudden down-turn (which was a bit frightening - or would have been frightening if i weren't so unflappable in this type situation) has postponed all her cancer treatments until after she has her shunt implanted next week. I expect they require a recovery period after that also before they start shooting her with chemo and radiation.
There is no one here to take over. I kept hoping someone would step in and start doing some of the care-taking (laundry, trash, dishes, meals, kid transportation, dog walking, recycling, cleaning cleaning, long funny or reminiscing conversations to take her mind off things, phone calls to return, friends to update and inform, medical appointments to make, break, change, and rearrange, banking, grocery shopping, and if I don;t get her whole-house vacuum working I will ask ALL her friends if I can borrow a vacuum! It is awful to live in a pile of dog-hair and dust with no way to get the sofa clean. (you know me and dirt...)
All my clothes smell of dog - and Tessa thinks I love her (because I take her on nice walks on the hill out back) so she comes into my room, lays on my rug, and scratches herself... yyeeeeuuucchhhh!
So, anyway, it looks like I'll need to stay a bit longer. I'm hoping to talk with her oncologist on Monday or at least one day next week to find out the new plan for treatment. Originally she was all set to start radiation on March 16, the day she is now scheduled to get the implant. Just found this -- it might be the best link for helping to explain to people, but all explanations are scary sounding, so I'm a bit wary of posting where Sastun and Alina and Grammie Rose can see... http://www.brainaustralia.org.au/AZ_of_Brain_Disorders/hydrocephalus
The cat is hairy like my cat Clover but softer fur, weighs about half an ounce (actually about 6 lbs, but feels like you're picking up air when you're used to a heavyweight) and is neutral: sleeps on my bed sometimes, is gone sometimes. Allows herself to be carried around - sounds like a person imitating a cat: "Me-ow.......me-ow" Her name is Scarlet (not a bit of red on her, nor does she wear ante-bellum dresses, so I don't know where the name comes from)
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This house is busy all day - between just sitting with Terry to keep her mind occupied so she stays calm, grocery shopping, transporting kids, cleaning, - I'm always up late getting myself taken care of. Terry has been vomiting a lot - I hope the procedure on Tuesday helps to settle her stomach. The pressure on her brain affects everything - physical and mental.
Lots of phone calls to make tomorrow to make sure we are prepared for Tuesday - and to schedule a visiting nurse to come every day for a while, i hope. A friend brought me a cell phone to use - just local, but it means maybe i can get back to taking longer walks on the hill - lately Terry gets panicky if I'm not within hearing range and i hope she will feel reassured if she can call me while I'm walking the dog on the hill.
She is feeling very scared and dependent. I'm feeling trapped, but what can I do? She really does need me for now. My niece Andrea is planning to come up and stay for a few weeks later, and Cybele will be coming back for a few days. I hope to get more people lined up also - but mostly i hope Terry gets a lot better from this shunt implant.
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The last message before the shunt:
Hi all you friends of Terry Lee (Phillips) - I apologize for the mass mailing, but hope you will understand and forgive.
I am Terry's sister, Tina Lee. Some of you know me. Terry is quite ill right now and I have flown from Maine to British Columbia to be with her and help her as she travels an unexpected path. After several months of shattering headache, Terry was diagnose with cancer. The cancer is small, early in the lung. Her prognosis is much better than average because the cancer was found before she had any lung symptoms. Last week, a complication postponed all cancer treatments while we await a ventricular shunt to reduce reduce pressure on her brain. This was an unexpected sideline discovered after several days of decreasing mental function and several emergency trips to the hospital. It was a scary few days and we are glad to have an excellent neurosurgeon performing her surgery tomorrow. She is expected to improve rapidly and dramatically as soon as the shunt is in place and working. She will begin radiation for the cancer next week (March 24).
Terry asked me to write to you all to let you know you are in her mind as she does not have the energy or ability to write you herself. She was concerned that her lack of response or correspondence might have been noted and wishes to assure you all that you are loved and she will be back up to her usual hi-jinx as soon as she is able. We also would ask of you that you keep Terry in mind tomorrow (March 16) while she is in surgery - 11:00 a.m. Pacific time.
Please feel free to contact me with any questions or offers of help (hint hint) - I will be at the hospital most of the 16th, but will be home the morning of the 17th. Terry will stay at the hospital 48 hours.
Ruth: Terry asked that you contact your mutual friends and be a go-between since she does not have energy enough to receive well-wishes from everyone. I can send a list if you would like one.
Helen: If you feel like taking Tessa for a walk, she would probably enjoy one, as I will be gone most of the day. I look forward to meeting you soon.
Sarah: I spoke with Rick several weeks ago on the phone (before flying out). I'm sorry we have been too busy to get in touch but I am looking forward to meeting you also.
Kristol: We are almost out of milk. I suggested to Sastun that he might call and ask if you could bring some... was that too forward of me?
Debby: How do you take your tea?
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