There I am.
Here I am.
My mind shifts daily, hourly, minute-by-minute as calls are made and calls come, as e-mails arrive and replies stack in my g-mail account. Terry grows more confused, tired, is bed-bound but holds a conversation with me in which we chat and laugh and share silence. She mixes up names sometimes, but so do I, so who's counting?
Then a call to my mom leads to two hours of almost frantic conversation as she holds on, holds up, pushes away the overwhelming grief that creeps constantly higher and higher, as if rising up to weaken knees, churn stomach; she feels it in her throat and she cannot breathe, forgetting that she, only she, Rose, is the breather and the holder of breath. And so I call often and long, and provide her with a calling card so she can call me when she is falling apart. I hold it together. And when I fall apart, I find the pieces and I stick them back together. Because I am the heartless pragmatist while Terry lies dying and my mother flails at the gods. I hold it together because that is my role.
Terry would like me to come back to spend more time with her before she dies. She is doing better than we had expected, but in steady decline and there is no way to know when her mental process will lose the ability to bounce back after a couple days rest. I am battling Lyme disease - after a two-year delay in diagnosis - and suffer acute nausea and vomiting unpredictably after taking the antibiotic that is supposed to be killing off the spirochetes that stole my brain and body for a while last summer. It's all guesswork: will Terry still be wanting me to visit if I wait until after Christmas? Will the Lyme be diminishing so that travel is easier? Will my mother - Terry's mother - be willing to go with me to see Terry? It is such a long long way - such an enormously tiring journey to get to Terry's distant home on Vancouver Island. This distance is like a moat with no bridge. It's a hard swim uphill to get there.
Sastun has said he would like it very much if I could come. He says Alina is still angry; doesn't want any "strangers" in the house - even family strangers. He says it is not that she hates me as much as she hates anyone coming into her home. I wonder how she will cope with the huge change to come. It is safe to ignore her hate, since it is understandable - who would not rail and rage at death robbing the future? Imagine it. Imagine what is happening in a 15 year old girl whose mother, the only steady parent, only steady adult she's ever known, is evaporating before her eyes. Today is Sastun and Alina's birthday: Twins, as unalike as sister and brother can be, today they turn 16. And Sastun says his Dad seems to be tired and would really appreciate a break. When I asked about him, no one called Ron a kind, caring, or compassionate man, yet here he is, in the primary caregiver's role. I hope his sense of humor helps - though I sense little of it in his emails or voice when I call.
I call - chat - try to think of something to say. I breathe. I attend yoga classes as if I were going to church: with faith that this will heal not only my body (certainly it will help more than sitting in a pew) but even my embattled mind, tired of holding it together. At the end of class, we lay ourselves down for a few minutes in Savasana, eyes closed, fully relaxed, and this is when my eyes start to leak. But in public I hold on, hold up. Only at home do I give in sometimes to the sobbing and keening.
And then, the heartless pragmatist, I wash dishes and fold laundry and sand my new old secretary desk for pickling and setting in my tiny writing room. A room of my own where the stories will be written without Terry's input, without her faulty memory to battle my faulty memory in the emails we planned in our sisterly collaboration. Where is my collaborator?
Terry lives. Waiting for her time, she keeps breathing, eating, sleeping. She takes morphine when she needs it. Nurses come to the home daily, as well as home aids to help with personal hygiene and to help with her daily needs. Her bed was moved into the breakfast nook where big glass sliding doors look out onto the green hill where deer and rabbits nibble and nap. They had snow last week. Already there is snow again. It was snowing when I was there, driving those steep, dark, winding roads to and from the hospitals, learning what we didn't want to know.
Monday, November 29, 2010
Monday, October 11, 2010
Happy Thanksgiving in Canada
Terry spent a few days in Chemainus Health Centre last week to give Ron, her full-time caregiver, and the kids a bit of a break and to give her a few days away from home. I suspect Ron spent much of his "break" cleaning house, as his first e-mail after dropping her off asked where to find dump stickers. Several friends made their way to visit while she was there: Hans and Freda from almost-next-door came twice and brought a pumpkin chess cake, Genevieve from Quaker meeting, her good friend Irv, Sophie, and of course Ron and the kids did come to visit, too, as well as others I don't know about.
As her cancer progresses, Terry needs more and more care and cannot take care of herself at this point. Her mind grows tired easily which means that visits and conversations are limited to a half-hour before she gets confused as fatigue takes over. She spends some time imagining the work she had planned involving conserving even more land and a Providence Farm community home idea for homeless and disabled people - and sometimes forgets that she is no longer working on that project.
Most of this I hear from letters from friends and from updates from Ron since I have been waging my own small war against a late diagnosis of Lyme disease which became apparent during the stresses - both physical and emotional - of two trips and a prolonged stay in the strange and uncharted territories of Cobble Hill, BC. Needless to say, my own small discomforts are put into clear perspective when viewed from the side of Terry's bed.
Is she in pain? The first few months after receiving her shunt (which ended the many-month's long headache) Terry did not have specific pain. Radiation to her brain did cause considerable discomfort, but other than that, there was not any pain from the cancer. Now, almost nine months after her diagnosis, she does ask for pain medication to help her sleep.
Terry's many friends from Vancouver Island often wonder what they can do, how to reach out and help, though most have known her only a short time and do not feel they are close to her. Terry's close friends who have known her many years, decades of close friendship, are thousands of miles away and often (myself included here) wish she were closer so that we might go for a few days or a week at a time to help out. The distance involved, and the added complexities of getting to an island, as well as international border crossing, requires considerable planning, time and money just for the travel itself. Terry chose her new home to be in a distant land - a decision that has had a profound effect on her end-of-life care: free medical care of excellent quality, but too far to be surrounded by friends and family. Her one full-time caregiver is the father of her children and her former husband, a man of rare courage and extraordinary willingness and desire to be there for Terry and the kids even after their divorce. I cannot begin to imagine how hard this must be for him - physically exhausting and emotionally draining - and he also a newcomer without close friends to call on.
On that cheerful note, I go to help prepare a lobster dinner for my husband's former wife and their kids. As Terry's life closes bit by bit, our lives continue without pause. Rather than stop us from enjoying our own lives, let us open our eyes and be thankful for each day we have. Not one of us knows how many we have left.
As her cancer progresses, Terry needs more and more care and cannot take care of herself at this point. Her mind grows tired easily which means that visits and conversations are limited to a half-hour before she gets confused as fatigue takes over. She spends some time imagining the work she had planned involving conserving even more land and a Providence Farm community home idea for homeless and disabled people - and sometimes forgets that she is no longer working on that project.
Most of this I hear from letters from friends and from updates from Ron since I have been waging my own small war against a late diagnosis of Lyme disease which became apparent during the stresses - both physical and emotional - of two trips and a prolonged stay in the strange and uncharted territories of Cobble Hill, BC. Needless to say, my own small discomforts are put into clear perspective when viewed from the side of Terry's bed.
Is she in pain? The first few months after receiving her shunt (which ended the many-month's long headache) Terry did not have specific pain. Radiation to her brain did cause considerable discomfort, but other than that, there was not any pain from the cancer. Now, almost nine months after her diagnosis, she does ask for pain medication to help her sleep.
Terry's many friends from Vancouver Island often wonder what they can do, how to reach out and help, though most have known her only a short time and do not feel they are close to her. Terry's close friends who have known her many years, decades of close friendship, are thousands of miles away and often (myself included here) wish she were closer so that we might go for a few days or a week at a time to help out. The distance involved, and the added complexities of getting to an island, as well as international border crossing, requires considerable planning, time and money just for the travel itself. Terry chose her new home to be in a distant land - a decision that has had a profound effect on her end-of-life care: free medical care of excellent quality, but too far to be surrounded by friends and family. Her one full-time caregiver is the father of her children and her former husband, a man of rare courage and extraordinary willingness and desire to be there for Terry and the kids even after their divorce. I cannot begin to imagine how hard this must be for him - physically exhausting and emotionally draining - and he also a newcomer without close friends to call on.
On that cheerful note, I go to help prepare a lobster dinner for my husband's former wife and their kids. As Terry's life closes bit by bit, our lives continue without pause. Rather than stop us from enjoying our own lives, let us open our eyes and be thankful for each day we have. Not one of us knows how many we have left.
Friday, August 20, 2010
Happy 55th Birthday!
Terry celebrated her 55th birthday with a house full of friends and a host of birthday greetings from across the continent. Hans, a Dutch neighbor, baked a chocolate cake; Genevieve shared one of Terry's favorite songs with some musical friends who learned it in one night and performed it for Terry and the crowd.
When I lived with my grandmother, we'd always sit together after a gathering at the house and we'd count up the people who came - by name and number. If I had been at the party, I'd sit now and follow that tradition: naming the guests, counting up how many and where they had come from, settling the memory with a pattern of faces and names. I wasn't there so I won't be naming the names, playing the memory like a familiar movie in my mind. I can tell you that a lot of people sent birthday greetings through facebook and those greetings were read to Terry by Sastun and Alina. THsnks to all who took a moment, an hour, or a day to help make memories for all of us who so very much want to have a great store of memories for the future.
When I lived with my grandmother, we'd always sit together after a gathering at the house and we'd count up the people who came - by name and number. If I had been at the party, I'd sit now and follow that tradition: naming the guests, counting up how many and where they had come from, settling the memory with a pattern of faces and names. I wasn't there so I won't be naming the names, playing the memory like a familiar movie in my mind. I can tell you that a lot of people sent birthday greetings through facebook and those greetings were read to Terry by Sastun and Alina. THsnks to all who took a moment, an hour, or a day to help make memories for all of us who so very much want to have a great store of memories for the future.
Thursday, July 1, 2010
Tonight i write this.
If learning new skills keeps a person young, I better lay off for a while and let myself age again.
Crawled under my sister's very low back deck with propane torch, solder, flux, steel wool, sandpaper, gloves, kid's paintbrush, and a pair of garden gloves. For 24 hours I didn't dare turn on the water, afraid it would leak. The fix appears to be good: no drips. Applause welcome.
Spent much of today in the basement, continuing cleaning up the mess left by the insulation job: foam-board particles drifting across the floor, fiberglass dust filtered over every surface and into everything throughout a huge jumble of assorted debris including 3 boxes of rotten apples, boxes of dirt, cut-up milk bottles, plastic, books, magazines, framed pictures, frames without pictures, clothes, kitchen items, cloth, curtains, wire, cardboard boxes, chunks of Styrofoam, potting soil, plant-pots, plant hangers, jewelry, old newspapers, painting supplies, pens, pencils, pins, pots and pans all piled in a heap in the middle of the floor.
In another part of the basement, several suitcases stacked haphazardly with camping supplies and pet carrier, child's chair, a great mess of large upholstery fabric pieces, lengths of chain, and some nail-studded lumber which appears to have been shelving at some time in the past. A bare bulb hangs from the low ceiling, but the switch is not evident. Darkness prevails. The air is thick with toxic dust waiting to rise.
A small bright room sports a closed window and wooden brackets: some sheets of chip-board are found to fit and we have a room full of shelves ready for storage. Over the next few weeks, photo albums, incense-burners, candle holders, jewelry boxes, Christmas ornaments, wooden carvings, books and bangles - anything that might be construed as having sentimental value is carefully retrieved from the debris and sorted into boxes here.
Summer patio furniture is carried out to the back deck; a downspout is shoved back onto the rain-gutter, drains unplugged, bathroom scrubbed again and again. Garden hoses dug out of deep weeds, rhubarb picked and cooked. Guitar practiced. Dog walked. Cat cuddled.
It takes hours, days, and phone calls but eventually all utilities are arranged to be paid automatically (at this writing, waiting for banks to open to get final numbers for credit card to go on automatic)
It's Canada Day and the neighborhood is very quiet. Thick clouds overhead, occasional rain. Cassolet with turkey in the oven. Slow.
Today I regret not taking more pictures of the work here. I was embarrassed for Terry: couldn't imagine she would want the world (her friends) to see what a state her life/house was in. The black slimy mold, thick on the fridge inside and out; grime upon grime layered on bathroom fixtures with clogged drains. Now I look at the tidied cellar, boxes waiting to be recycled and tools hanging over the work-bench and I wish I had taken fewer photos of the wonderland out in the wooded hill behind the house and more photos of the job here: from the daily and ever-ongoing household maintenance (the kitchen after a successful teen sleepover including midnight crepe-making) to the unspeakable disorder and filth in the bedside drawer (numerous and assorted pill bottles, loose pills, dirty dishes, snack-food, canning jars of semi-potable liquid, scratch paper, pens, pencils, crumbs) - a journal of images to help me remember and recognize the extent of the job I've been doing. Because the memory will recede quickly as my tendency is to diminish my hardships, to downplay the difficulties, to underestimate long-term effects on my emotions, my family, my relationships, my sense of self-worth.
Terry called me superwoman, credited me with saving her life. She relied on me so completely and I did what was needed. And i did what i had to do. Now the initial crisis is history. The day to day coping with cancer is what's left. Walking the dog, washing the dishes, helping with the things that would wear her out so she has energy enough to do things she wants to do.
So I came this time with an agenda: Betty wants to be sure a memorial service is held in accordance with Terry's wishes. Terry was pleased and made some suggestions: music - Morning has Broken; The River; some others. I should ask her again and write them down. A traditional Quaker service - with an explanation for those who haven't experienced one before, and followed by a pot-luck and singing. But not yet: she is still alive and gardening and thinking about life, not death now. She thought about death a lot last time. Now she wants to enjoy the sunny days, Oprah Show, good food.
She has no pain. That alone is some kind of miracle: how can someone have cancer as serious as hers and yet be in no pain? A visual distortion hampers her ability to enjoy books or movies, but the only other symptom is weakness and fatigue. She naps during the day between eating and gardening, snoring gently. In the evening she watches TV while i write or read. And tonight i write this.
Crawled under my sister's very low back deck with propane torch, solder, flux, steel wool, sandpaper, gloves, kid's paintbrush, and a pair of garden gloves. For 24 hours I didn't dare turn on the water, afraid it would leak. The fix appears to be good: no drips. Applause welcome.
Spent much of today in the basement, continuing cleaning up the mess left by the insulation job: foam-board particles drifting across the floor, fiberglass dust filtered over every surface and into everything throughout a huge jumble of assorted debris including 3 boxes of rotten apples, boxes of dirt, cut-up milk bottles, plastic, books, magazines, framed pictures, frames without pictures, clothes, kitchen items, cloth, curtains, wire, cardboard boxes, chunks of Styrofoam, potting soil, plant-pots, plant hangers, jewelry, old newspapers, painting supplies, pens, pencils, pins, pots and pans all piled in a heap in the middle of the floor.
In another part of the basement, several suitcases stacked haphazardly with camping supplies and pet carrier, child's chair, a great mess of large upholstery fabric pieces, lengths of chain, and some nail-studded lumber which appears to have been shelving at some time in the past. A bare bulb hangs from the low ceiling, but the switch is not evident. Darkness prevails. The air is thick with toxic dust waiting to rise.
A small bright room sports a closed window and wooden brackets: some sheets of chip-board are found to fit and we have a room full of shelves ready for storage. Over the next few weeks, photo albums, incense-burners, candle holders, jewelry boxes, Christmas ornaments, wooden carvings, books and bangles - anything that might be construed as having sentimental value is carefully retrieved from the debris and sorted into boxes here.
Summer patio furniture is carried out to the back deck; a downspout is shoved back onto the rain-gutter, drains unplugged, bathroom scrubbed again and again. Garden hoses dug out of deep weeds, rhubarb picked and cooked. Guitar practiced. Dog walked. Cat cuddled.
It takes hours, days, and phone calls but eventually all utilities are arranged to be paid automatically (at this writing, waiting for banks to open to get final numbers for credit card to go on automatic)
It's Canada Day and the neighborhood is very quiet. Thick clouds overhead, occasional rain. Cassolet with turkey in the oven. Slow.
Today I regret not taking more pictures of the work here. I was embarrassed for Terry: couldn't imagine she would want the world (her friends) to see what a state her life/house was in. The black slimy mold, thick on the fridge inside and out; grime upon grime layered on bathroom fixtures with clogged drains. Now I look at the tidied cellar, boxes waiting to be recycled and tools hanging over the work-bench and I wish I had taken fewer photos of the wonderland out in the wooded hill behind the house and more photos of the job here: from the daily and ever-ongoing household maintenance (the kitchen after a successful teen sleepover including midnight crepe-making) to the unspeakable disorder and filth in the bedside drawer (numerous and assorted pill bottles, loose pills, dirty dishes, snack-food, canning jars of semi-potable liquid, scratch paper, pens, pencils, crumbs) - a journal of images to help me remember and recognize the extent of the job I've been doing. Because the memory will recede quickly as my tendency is to diminish my hardships, to downplay the difficulties, to underestimate long-term effects on my emotions, my family, my relationships, my sense of self-worth.
Terry called me superwoman, credited me with saving her life. She relied on me so completely and I did what was needed. And i did what i had to do. Now the initial crisis is history. The day to day coping with cancer is what's left. Walking the dog, washing the dishes, helping with the things that would wear her out so she has energy enough to do things she wants to do.
So I came this time with an agenda: Betty wants to be sure a memorial service is held in accordance with Terry's wishes. Terry was pleased and made some suggestions: music - Morning has Broken; The River; some others. I should ask her again and write them down. A traditional Quaker service - with an explanation for those who haven't experienced one before, and followed by a pot-luck and singing. But not yet: she is still alive and gardening and thinking about life, not death now. She thought about death a lot last time. Now she wants to enjoy the sunny days, Oprah Show, good food.
She has no pain. That alone is some kind of miracle: how can someone have cancer as serious as hers and yet be in no pain? A visual distortion hampers her ability to enjoy books or movies, but the only other symptom is weakness and fatigue. She naps during the day between eating and gardening, snoring gently. In the evening she watches TV while i write or read. And tonight i write this.
Friday, June 4, 2010
At first, offers of help come fast and furious - much more offers of help than actual help. Then, when a particular need is inconvenient, the offer is retracted. A few steadfast friends try to do what they can, but when it comes to it, family are the ones who stick to the job, even family who have never been friends with Terry or of each other. What is it about family that makes it feel inconceivable to say "I'm too tired" or "I have my own needs" or "I can't do it" ?
Is it just me, my grandmother Una's voice in my ears saying "Can't? I don't know the meaning of that word! Give it a try; you can do anything if you try hard enough." Am I still trying to live up to her expectations? Terry hated the way Una pushed us to do more than was easy, more than was comfortable. I loved the challenge and craved the approval of those bright blue eyes looking at me, loving me wholly, faults and all.
And so my own family is in upheaval as we all prepare for separate summers in this most important of summers. A summer full of changes for everyone. We schedule as much as we can, but cancer does not follow any schedule and we all try to remember to breathe and keep flexible.
And now I look for a place to stay overnight in Seattle...
Is it just me, my grandmother Una's voice in my ears saying "Can't? I don't know the meaning of that word! Give it a try; you can do anything if you try hard enough." Am I still trying to live up to her expectations? Terry hated the way Una pushed us to do more than was easy, more than was comfortable. I loved the challenge and craved the approval of those bright blue eyes looking at me, loving me wholly, faults and all.
And so my own family is in upheaval as we all prepare for separate summers in this most important of summers. A summer full of changes for everyone. We schedule as much as we can, but cancer does not follow any schedule and we all try to remember to breathe and keep flexible.
And now I look for a place to stay overnight in Seattle...
Wednesday, May 19, 2010
No Time for Plans
Just a quick note to say there is no way to plan in times like these. I had hoped to be able to stay home with my daughter for a while this summer before she leaves for college - but it looks like I'll be needed back at Terry's sooner than I had hoped. People offer to help, but simply cannot make the commitment needed - and i guess that's what being family is all about: Home is where they have to take you in (who said that anyway? Robert Frost, I think?) and family is where you turn for help when you need more than friends can do.
I think of my daughter, who is an only child. Who will she turn to in times of need?
I think of my daughter, who is an only child. Who will she turn to in times of need?
Monday, April 19, 2010
As of April 19, 2010
Terry is vastly improved. She has terminal cancer which doctors believe started on her right lung and spread to her cerebellum and a small spot on her femur. This is a common pattern for this cancer. Less common in Adenocarcinoma is the spread of cancer to the spinal fluid. Terry has cancer cells in her spinal fluid. It was the presence of these cells which caused the hydrocephalus. I knew something was terribly wrong. Each night I wondered if she would still be breathing in the morning.Here is a website that gives a lot of information. In the list of symptoms, the only one Terry did not have was seizures. All this was a mystery - the website was found after the fact.
All that is past. We have endured - I say we because we have been a unit: I say "we" because these weeks I have felt as if i was merely an extension of Terry - the functioning part. We've been together almost constantly, except for dog-walking and sleeping. Oh and we shower separately, too. :)
Terry has no pain - the headaches were completely cured by the shunt to remove the hydrocephalus. She has no lung symptoms: no shortness of breath or coughing. She is spending time with her kids and talking to them openly and realistically about their future and about her dying. But she looks good and sounds good and she has really mellowed and is looking relaxed for the first time since i got here.
How much longer does she have?
We have no concrete answers about her prognosis. Today she is up and about and cooking herself some lunch and even tidying the kitchen a bit. The last time we saw the oncologist, Dr. Sally Smith, she made very clear non-committal statements "Most lung cancer patients have months, not years." Yet she also said that Terry's youth and prior health may allow her to fight the cancer more readily. And she said to try not to think in terms of "how long?" - but as we know, that question "how long?" is the one biggest thing in our minds, for all of us and each for our own reasons. Cancer is frustratingly unpredictable.
It is quite possible that she will rally and have a good summer. I don't know how often this kind of cancer goes into remission - whether she might actually have a year or more as was initially thought. I certainly hope so - partly for my own selfish reasons of wanting to spend the summer in my home with my husband and my last year with my daughter before she leaves for college.
It is also possible that the cancer cells in her spinal fluid will shut her down, cause loss of brain function, memory, balance, continence, coherence. I've been doing as much reading as I can and her specific diagnosis is uncommon, even for her type of cancer. I think this is also one reason the doctors are unwilling to give us any kind of time-table: they don't know.
All that is past. We have endured - I say we because we have been a unit: I say "we" because these weeks I have felt as if i was merely an extension of Terry - the functioning part. We've been together almost constantly, except for dog-walking and sleeping. Oh and we shower separately, too. :)
Terry has no pain - the headaches were completely cured by the shunt to remove the hydrocephalus. She has no lung symptoms: no shortness of breath or coughing. She is spending time with her kids and talking to them openly and realistically about their future and about her dying. But she looks good and sounds good and she has really mellowed and is looking relaxed for the first time since i got here.
How much longer does she have?
We have no concrete answers about her prognosis. Today she is up and about and cooking herself some lunch and even tidying the kitchen a bit. The last time we saw the oncologist, Dr. Sally Smith, she made very clear non-committal statements "Most lung cancer patients have months, not years." Yet she also said that Terry's youth and prior health may allow her to fight the cancer more readily. And she said to try not to think in terms of "how long?" - but as we know, that question "how long?" is the one biggest thing in our minds, for all of us and each for our own reasons. Cancer is frustratingly unpredictable.
It is quite possible that she will rally and have a good summer. I don't know how often this kind of cancer goes into remission - whether she might actually have a year or more as was initially thought. I certainly hope so - partly for my own selfish reasons of wanting to spend the summer in my home with my husband and my last year with my daughter before she leaves for college.
It is also possible that the cancer cells in her spinal fluid will shut her down, cause loss of brain function, memory, balance, continence, coherence. I've been doing as much reading as I can and her specific diagnosis is uncommon, even for her type of cancer. I think this is also one reason the doctors are unwilling to give us any kind of time-table: they don't know.
Disoriented
Here it is. As it is. I was trying to get it in order and fixed up so it made sense, chronology intact, grouped perhaps by medical and family and nature sections for ease of use. As it is, it is. This is closer to how it has been these months with Terry in British Columbia. When I first arrived, she was in terrible shape mentally - not psychologically. She was barely functioning as a mom, though that is perhaps the thing she was most able to do. The house was a disaster area, fridge full of rotten food, thick black mold in the bathroom, bills unpaid, scraps of paper everywhere, thick where she wrote and wrote and wrote as if writing all the thoughts would make it start making sense. But the words made no sense testifying not only to months of pain, but to what we later discovered was increasing disability due to hydrocephalus.
Hydrocephalus causes headache, confusion, lack of balance, vision problems, and will lead to death if not treated. The word that comes up most often is "disoriented" thus my decision to stop trying to fix this blog - to make it make sense. Because this is more as it was: disorienting.
I suggest you click on the links to the right and first look at the Feb post. It has the pictures and the disclaimer I insist you read before you get annoyed with me about something I may have written that seemed insensitive. I assure you, Terry approves of this project as it is.
Then you can scroll through the remainder, or you can click through - choosing to attempt chronological order.
Hydrocephalus causes headache, confusion, lack of balance, vision problems, and will lead to death if not treated. The word that comes up most often is "disoriented" thus my decision to stop trying to fix this blog - to make it make sense. Because this is more as it was: disorienting.
I suggest you click on the links to the right and first look at the Feb post. It has the pictures and the disclaimer I insist you read before you get annoyed with me about something I may have written that seemed insensitive. I assure you, Terry approves of this project as it is.
Then you can scroll through the remainder, or you can click through - choosing to attempt chronological order.
Saturday, April 17, 2010
The bronchoscopy Between timesm before the shunt
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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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 ....
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~
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?
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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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 ....
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~
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?
from March 16 to March 21
Terry wanted a neighbor to accompany us today on her shunt implant day. She wanted to be sure I didn't have to drive home alone. At first I thought it was silly: I know the way by now. But it was good to have someone at 10:30 at night in the car - to keep me awake and help me find the late night gas station. It was an awfully long day! Left home at 7:45a.m. and got back after 10:30p.m. The neighbor (Frida) was pleasant enough company but I would have suggested we nap in the recliners in the waiting area if I had realized how late we would be. Terry was very reluctant to have us leave - just feeling frightened about everything and used to having me close by to sit with. They let us stay an hour and a half past visiting hours - and I reassured Terry by chatting with the nurse about all her concerns and then promising to come back tomorrow and then the hour drive home in dark and rain. Another friend will go with me tomorrow, I think. She will probably come home Thursday or Friday.
Tomorrow is trash day - but I'm not setting the alarm to get it out to the curb at 7a.m. If I wake, it'll happen. I am feeling sick from lack of sleep at this point, so that's more important. There must be some way of taking trash myself - or find a friend to volunteer.
I hear the kid's friends arriving for a late-night movie fest. They can have the house: trash it or burn it down. I'm done with my day. I had planned on getting to bed early tonight. Oh well.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I woke this morning to a quiet house: the kids are still sleeping or possibly Alina has already gone for the day. The cat threw up in the living room but on a good note I did dash out in my long sleep-shirt and Terry's boots just in time to catch the garbage truck going by. Terry asked me to email ab0ut a dozen people before she went in to the hospital and now I have an inbox full of replies and inquiries. I'm telling them all to meet at my facebook where they can discuss the relative safety of hospitals with each other and let me get on with cleaning up the cat vomit for a change (instead of Terry's vomit - haha - a sort of cosmic joke, I guess)
I finally got Terry's guitar out. It is a seagull. Looks really new, beautiful blond finish and somewhat odd, elegant shape. I couldn't sleep lat night after the long day and two extra cups of coffee to keep me awake driving over the Malahat late last night. The Malahat is a very steep, winding, single-lane, 60mph, narrow, no-shoulders "highway" mountain pass between here and Victoria. It's beautiful, but treacherous. Anyway, the guitar beckoned as I lay in bed sometime after midnight, so I got up and found it in her room and opened it: it was sufficiently in tune - has a one-ton very hard, heavy protective case - so I just ran through some strums and chords and random picking and it sounded like bells, so so lovely. It will be interesting to see if it still sounds so beautiful in daylight.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
There is a "one week free" coupon here for the local fitness center, but no time to use it. Today is calling and cleaning day - not enough hours for both, but Terry's moms and dads will want a phone call to hear how her surgery went before I start tackling the mess in the freezers, etc. . It went fine. She has a shaved area about 2" square behind her right ear, a sore tummy where the shunt line ends and a lot of iodine on her head and ear which I hope they will finish washing off today. SHe shares a room with three other people in a mulit-room neuro ward. In her room there are two women and two men, so the curtains are generally closed for privacy. I imagine she is feeling lonely this morning... I hope they can help her not to feel as afraid as she was last night.
~~~~~~~~~~~~~
The kids are probably as safe as if their mother was in charge; I gather there is considerable leniency in the household as a rule. They are not accustomed to being asked to help around the house and I would not dare step in and interfere with Terry's parenting preference. It does add to the work, so I appreciate your involvement and will look for help today. They are both on spring break this week. Today, Sastun is sleeping late after being up late writing stories (he is a good writer - and I tutor writing, so I value my judgment) Alina spent the night at a friend's house for a girl's sleepover (the teenage word for pajama party) When I went to bed around midnight, I told Sastun I'd make waffles this morning if the waffle iron works.
Terry has not yet started any cancer treatments. Originally I came out to be with her while she underwent radiation and chemo, but both of those have been delayed due to unexpected complications. Within days of my arrival, her sense of balance deteriorated so much so that we bought a four-legged cane to help prevent falls. Concurrently, her ability to reason, to string sentences together, to read, to remember what had just happened, all slid downhill.
For three days in a row, I drove her to doctors in Victoria, making calls and politely and firmly insisting on being seen. By the third day, Terry stood by her front door and turned in circles, unable to find the way out until I took her by the arms and led her out. She could not make a full sentence. That day, we met with Dr. Cameron, the neurosurgeon. Looking at an MRI from the day before, he immediately diagnosed her condition as raised cranial pressure due to excess spinal fluid - either a blockage where spinal fluid flows or lack of absorption. He removed some spinal fluid for testing (spinal tap) and to relieve pressure. Immediately, Terry was alert and talking sensibly. Over the next three days, she improved, then very slowly deteriorated until the shunt could be implanted.
For about a week, we lived with vomit as a way of life, very little sleep at night for her and little sleep at all for me. She slept a lot during the day. At night, she was kept awake by fears and would call to me to come and sit with her. Her memory became a jumble - we laughed a lot during this time as we joked about her not knowing whether something had just happened yesterday, last week or last year. It sounds pretty awful, but we did a lot of singing old childhood songs (Joni Mitchell, Judy Collins - the ones Terry liked) and joking and the time passed until her shunt could be done. The kids were great. They spent a lot of time with friends, which I encouraged. Each evening I let them know when their mom was ready to give them hugs and say good night. A friend has loaned a cell phone so Sastun and Alina can reach me anytime no matter where I am. When Terry gets home, I will carry the cell while walking the dog or grocery shopping so she can reach me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Terry is coming home from the hospital tomorrow (Friday) and is amazingly better. She was moving almost normally, far better than at any time since I arrived. I have an invitation to a women's "sweat lodge" on Saturday and I believe I will be able to go to it and leave Terry alone for three hours. I hope it works out that i can because I've heard about these "seat lodge" things - it's an event, not just a sauna. I've never been interested in going to one in Maine because... well, I think I'd prefer to go as a stranger. No feeling of joining, just visiting.
Instead of driving myself, I rode to Victoria today with a friend of Terry's. Terry hugged her friend and then hugged me a long time and cried and said I love you and I'm sorry and all sorts of emotional stuff. I was so tired and worn out from the last few weeks I hardly knew how to respond: didn't have the energy to allow emotion to take its course. Also, I'm hesitant to let down my guard until she maintains some equilibrium of mood. The next few days will tell. Radiation starts next Tuesday.
I am really really going to try to get to bed earlier tonight so I don't fall asleep in the morning on the way to get Terry. It's a treacherous road. Beautiful but treacherous. Gonna brush teeth and play the seagull a few minutes and then see if sleep will come easier tonight.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Right now I am in week 5 of hell. I am lonely, scared, tired, weak, and hurting in mind and body. I am not able to think clearly right now
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I admit that when I saw Terry hugging her kids (I asked them to be there when we got home) and being a close family, I got very very lonely for my daughter and husband. Tonight I've been checking out how to delay my return, both ferry and flight.
When I mentioned getting a cleaner, Terry said she doesn't think it is necessary. She wants to gets her kids more involved in house chores (though once school starts up, they will have little time) and that she does not want to bring someone in. I don't want to go against her wishes at this point. It would be hard for someone to clean given the disorder in much of the house and maybe I will tackle some of that this weekend. While I was picking up Terry in Victoria this morning, her friend Linda came over and cleaned the fridge. It may be that it will need to be done in small bites.
~~~~~~~~~~~~~~~~~~~~~~~~~~~
No cheap way to change flights. Delta says cheaper to just cancel and use the credit for next flight rather than pay a change fee. The ferry also has a strict policy - even after hearing the details: no refunds, change fee is the same as buying a new ticket.
I miss my home in Maine, my daughter and husband and friends and dancing. I appreciate any thoughts, well-wishes or prayers, according to your own tradition (I respect all traditions) and if any of you would like to join me on facebook, it has been a source of support for me to see the thoughts and jokes and coffee-talk of my friends (and strangers, even) on facebook.
I've been invited to a number of local events and even to sing, but have so far been unable to leave my sister for long enough to get out for social events. Now that the emergency issues have been taken care of, we hope her cancer treatments will be mundane. Since having a ventricular shunt implanted, she has become more lucid and able to do much of her own self-care - even cooking - though still has to be monitored. Best of all, she hasn't vomited since coming home from the hospital. This is a welcome change to all. (We joked about writing a book "Vomiting as a way of Life.") She has a "good" prognosis of five or more years if all goes well with her treatments.
~~~~~~~~~~~~~~~
Still out here with my sister. Not much fun for any of us. I wish she and I were closer - it has taken some time to get to know each other and for me to remember why we never were really friends. Hopefully we will grow closer during this time of need. Anyway, here I am for now.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This morning she has planned my day to be full of things she wants me to see and do before she starts being ill again from radiation. I'm stealing a few minutes to respond to emails before shooting out the door.
My husband and daughter have been very supportive of my needing to be here with Terry, and the only difficulty is financial which we can work around. I would like to be home for my daughter's spring concert and her graduation, but she will understand if i miss the concert and graduation isn't until June. There are also lots of friends who have offered, unfortunately none who can (or will) actually move in with Terry and that appears to be needed for now. They will be able to offer me respite from time to time as I get to know them better.
Terry was reluctant to have a stranger come in and help out. For now I'm leaving it at that and simply managing to get things done on my own - I've been running a household for decades and have managed restaurants and small businesses so I figure I ought to be able to figure out the system here. If it gets too difficult, I will ignore Terry's preference and will hire someone. I'm assembling a list of possible help and am asking neighbors for advice on hiring. One day while Terry was still in the hospital, I asked a friend to clean out her fridge. I had noticed the friend had an immaculate house and, sure enough, the fridge was spotless on our return.
~~~~~~~~~~~~~~~~~~~~~~~~~
Tomorrow is trash day - but I'm not setting the alarm to get it out to the curb at 7a.m. If I wake, it'll happen. I am feeling sick from lack of sleep at this point, so that's more important. There must be some way of taking trash myself - or find a friend to volunteer.
I hear the kid's friends arriving for a late-night movie fest. They can have the house: trash it or burn it down. I'm done with my day. I had planned on getting to bed early tonight. Oh well.
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I woke this morning to a quiet house: the kids are still sleeping or possibly Alina has already gone for the day. The cat threw up in the living room but on a good note I did dash out in my long sleep-shirt and Terry's boots just in time to catch the garbage truck going by. Terry asked me to email ab0ut a dozen people before she went in to the hospital and now I have an inbox full of replies and inquiries. I'm telling them all to meet at my facebook where they can discuss the relative safety of hospitals with each other and let me get on with cleaning up the cat vomit for a change (instead of Terry's vomit - haha - a sort of cosmic joke, I guess)
I finally got Terry's guitar out. It is a seagull. Looks really new, beautiful blond finish and somewhat odd, elegant shape. I couldn't sleep lat night after the long day and two extra cups of coffee to keep me awake driving over the Malahat late last night. The Malahat is a very steep, winding, single-lane, 60mph, narrow, no-shoulders "highway" mountain pass between here and Victoria. It's beautiful, but treacherous. Anyway, the guitar beckoned as I lay in bed sometime after midnight, so I got up and found it in her room and opened it: it was sufficiently in tune - has a one-ton very hard, heavy protective case - so I just ran through some strums and chords and random picking and it sounded like bells, so so lovely. It will be interesting to see if it still sounds so beautiful in daylight.
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There is a "one week free" coupon here for the local fitness center, but no time to use it. Today is calling and cleaning day - not enough hours for both, but Terry's moms and dads will want a phone call to hear how her surgery went before I start tackling the mess in the freezers, etc. . It went fine. She has a shaved area about 2" square behind her right ear, a sore tummy where the shunt line ends and a lot of iodine on her head and ear which I hope they will finish washing off today. SHe shares a room with three other people in a mulit-room neuro ward. In her room there are two women and two men, so the curtains are generally closed for privacy. I imagine she is feeling lonely this morning... I hope they can help her not to feel as afraid as she was last night.
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The kids are probably as safe as if their mother was in charge; I gather there is considerable leniency in the household as a rule. They are not accustomed to being asked to help around the house and I would not dare step in and interfere with Terry's parenting preference. It does add to the work, so I appreciate your involvement and will look for help today. They are both on spring break this week. Today, Sastun is sleeping late after being up late writing stories (he is a good writer - and I tutor writing, so I value my judgment) Alina spent the night at a friend's house for a girl's sleepover (the teenage word for pajama party) When I went to bed around midnight, I told Sastun I'd make waffles this morning if the waffle iron works.
Terry has not yet started any cancer treatments. Originally I came out to be with her while she underwent radiation and chemo, but both of those have been delayed due to unexpected complications. Within days of my arrival, her sense of balance deteriorated so much so that we bought a four-legged cane to help prevent falls. Concurrently, her ability to reason, to string sentences together, to read, to remember what had just happened, all slid downhill.
For three days in a row, I drove her to doctors in Victoria, making calls and politely and firmly insisting on being seen. By the third day, Terry stood by her front door and turned in circles, unable to find the way out until I took her by the arms and led her out. She could not make a full sentence. That day, we met with Dr. Cameron, the neurosurgeon. Looking at an MRI from the day before, he immediately diagnosed her condition as raised cranial pressure due to excess spinal fluid - either a blockage where spinal fluid flows or lack of absorption. He removed some spinal fluid for testing (spinal tap) and to relieve pressure. Immediately, Terry was alert and talking sensibly. Over the next three days, she improved, then very slowly deteriorated until the shunt could be implanted.
For about a week, we lived with vomit as a way of life, very little sleep at night for her and little sleep at all for me. She slept a lot during the day. At night, she was kept awake by fears and would call to me to come and sit with her. Her memory became a jumble - we laughed a lot during this time as we joked about her not knowing whether something had just happened yesterday, last week or last year. It sounds pretty awful, but we did a lot of singing old childhood songs (Joni Mitchell, Judy Collins - the ones Terry liked) and joking and the time passed until her shunt could be done. The kids were great. They spent a lot of time with friends, which I encouraged. Each evening I let them know when their mom was ready to give them hugs and say good night. A friend has loaned a cell phone so Sastun and Alina can reach me anytime no matter where I am. When Terry gets home, I will carry the cell while walking the dog or grocery shopping so she can reach me.
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Terry is coming home from the hospital tomorrow (Friday) and is amazingly better. She was moving almost normally, far better than at any time since I arrived. I have an invitation to a women's "sweat lodge" on Saturday and I believe I will be able to go to it and leave Terry alone for three hours. I hope it works out that i can because I've heard about these "seat lodge" things - it's an event, not just a sauna. I've never been interested in going to one in Maine because... well, I think I'd prefer to go as a stranger. No feeling of joining, just visiting.
Instead of driving myself, I rode to Victoria today with a friend of Terry's. Terry hugged her friend and then hugged me a long time and cried and said I love you and I'm sorry and all sorts of emotional stuff. I was so tired and worn out from the last few weeks I hardly knew how to respond: didn't have the energy to allow emotion to take its course. Also, I'm hesitant to let down my guard until she maintains some equilibrium of mood. The next few days will tell. Radiation starts next Tuesday.
I am really really going to try to get to bed earlier tonight so I don't fall asleep in the morning on the way to get Terry. It's a treacherous road. Beautiful but treacherous. Gonna brush teeth and play the seagull a few minutes and then see if sleep will come easier tonight.
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Right now I am in week 5 of hell. I am lonely, scared, tired, weak, and hurting in mind and body. I am not able to think clearly right now
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I admit that when I saw Terry hugging her kids (I asked them to be there when we got home) and being a close family, I got very very lonely for my daughter and husband. Tonight I've been checking out how to delay my return, both ferry and flight.
When I mentioned getting a cleaner, Terry said she doesn't think it is necessary. She wants to gets her kids more involved in house chores (though once school starts up, they will have little time) and that she does not want to bring someone in. I don't want to go against her wishes at this point. It would be hard for someone to clean given the disorder in much of the house and maybe I will tackle some of that this weekend. While I was picking up Terry in Victoria this morning, her friend Linda came over and cleaned the fridge. It may be that it will need to be done in small bites.
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No cheap way to change flights. Delta says cheaper to just cancel and use the credit for next flight rather than pay a change fee. The ferry also has a strict policy - even after hearing the details: no refunds, change fee is the same as buying a new ticket.
I miss my home in Maine, my daughter and husband and friends and dancing. I appreciate any thoughts, well-wishes or prayers, according to your own tradition (I respect all traditions) and if any of you would like to join me on facebook, it has been a source of support for me to see the thoughts and jokes and coffee-talk of my friends (and strangers, even) on facebook.
I've been invited to a number of local events and even to sing, but have so far been unable to leave my sister for long enough to get out for social events. Now that the emergency issues have been taken care of, we hope her cancer treatments will be mundane. Since having a ventricular shunt implanted, she has become more lucid and able to do much of her own self-care - even cooking - though still has to be monitored. Best of all, she hasn't vomited since coming home from the hospital. This is a welcome change to all. (We joked about writing a book "Vomiting as a way of Life.") She has a "good" prognosis of five or more years if all goes well with her treatments.
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Still out here with my sister. Not much fun for any of us. I wish she and I were closer - it has taken some time to get to know each other and for me to remember why we never were really friends. Hopefully we will grow closer during this time of need. Anyway, here I am for now.
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This morning she has planned my day to be full of things she wants me to see and do before she starts being ill again from radiation. I'm stealing a few minutes to respond to emails before shooting out the door.
My husband and daughter have been very supportive of my needing to be here with Terry, and the only difficulty is financial which we can work around. I would like to be home for my daughter's spring concert and her graduation, but she will understand if i miss the concert and graduation isn't until June. There are also lots of friends who have offered, unfortunately none who can (or will) actually move in with Terry and that appears to be needed for now. They will be able to offer me respite from time to time as I get to know them better.
Terry was reluctant to have a stranger come in and help out. For now I'm leaving it at that and simply managing to get things done on my own - I've been running a household for decades and have managed restaurants and small businesses so I figure I ought to be able to figure out the system here. If it gets too difficult, I will ignore Terry's preference and will hire someone. I'm assembling a list of possible help and am asking neighbors for advice on hiring. One day while Terry was still in the hospital, I asked a friend to clean out her fridge. I had noticed the friend had an immaculate house and, sure enough, the fridge was spotless on our return.
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Filling in from Feb 17 to March 16
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)
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)
Being here - March 2, 2010
Tuesday, March 2, 2010
Being Here
The kids are used to finding and fixing food for themselves, not real meals, but have not yet learned to clean up - something I hope they are willing to learn to do for themselves. So far I've done laundry, but none of mine; only new flannel sheets for Terry's bed and some vomity towels tonight after a particularly unpleasant few hours when she was terribly sick - now resting well and time for me to get some rest as well: it's one a.m. Being weak and needing to rely on someone else is a frightening thing for someone who is used to being in charge.
There is lots more to write about: hiking the mountain, losing the dog (and recovering the dog), beach-combing for driftwood, shopping at thrift-stores, taking a weaving-therapy class together, de-fleaing the cat and getting 10lbs of bananas, a personal harp concert, and much more. There are days when Terry can get out and about, shopping or visiting friends with me as driver and aide. Often she need help with her balance or gets too weak to stand for long. The medication causes difficult side-effects and is less effective as time goes on. Radiation to the tumors in her brain are scheduled for late March and she should see much improvement after that. The tumors cause inflammation which causes terrible headache (the first symptom she had) and confusion.
Beginning at the beginning is easier for the reader, but the writer must sometimes write from where the writing starts and hope to fill in the rest later. And the writer is now here. Just being here.
Tuesday, February 23, 2010
New Beginnings
Here is a disjointed account for staying with my sister while she deals with cancer. It is mostly comprised of snippets and bits clipped from emails and facebook posts. I am having some issues with getting them in the correct order, so look for title dates rather than actual order. I made this page for Terry to write on, but that has not been possible nor likely, so I'm filling it in as best as i can - and as honestly. I hope you will understand that much of it was written with the intent of private communications or thoughts - and so it has more candidness than you might have found otherwise.
One of the challenges is to be here. To be present in the moment and fully with the patient, even when there is silence and nothing to do or say but just to be here, to be a comfort and to stand by and stare down the fears that creep in during times when pain or weakness or confusion reign. Also to be here, to be away from my beloved, precious newly created family, my beautiful home, my friends and comforts. To be here, so far away from what is familiar and groping about for a foothold in this community, seeking aid from strangers.
The kids are used to finding and fixing food for themselves, not real meals, but have not yet learned to clean up - something I hope they are willing to learn to do for themselves. So far I've done laundry, but none of mine; only new flannel sheets for Terry's bed and some vomity towels tonight after a particularly unpleasant few hours when she was terribly sick - now resting well and time for me to get some rest as well: it's one a.m. Being weak and needing to rely on someone else is a frightening thing for someone who is used to being in charge.
There is lots more to write about: hiking the mountain, losing the dog (and recovering the dog), beach-combing for driftwood, shopping at thrift-stores, taking a weaving-therapy class together, de-fleaing the cat and getting 10lbs of bananas, a personal harp concert, and much more. There are days when Terry can get out and about, shopping or visiting friends with me as driver and aide. Often she need help with her balance or gets too weak to stand for long. The medication causes difficult side-effects and is less effective as time goes on. Radiation to the tumors in her brain are scheduled for late March and she should see much improvement after that. The tumors cause inflammation which causes terrible headache (the first symptom she had) and confusion.
Beginning at the beginning is easier for the reader, but the writer must sometimes write from where the writing starts and hope to fill in the rest later. And the writer is now here. Just being here.
Now click on the "April" links in the menu to the right to get to the rest of the blog.
Tuesday, March 2, 2010
Being Here
The kids are used to finding and fixing food for themselves, not real meals, but have not yet learned to clean up - something I hope they are willing to learn to do for themselves. So far I've done laundry, but none of mine; only new flannel sheets for Terry's bed and some vomity towels tonight after a particularly unpleasant few hours when she was terribly sick - now resting well and time for me to get some rest as well: it's one a.m. Being weak and needing to rely on someone else is a frightening thing for someone who is used to being in charge.
There is lots more to write about: hiking the mountain, losing the dog (and recovering the dog), beach-combing for driftwood, shopping at thrift-stores, taking a weaving-therapy class together, de-fleaing the cat and getting 10lbs of bananas, a personal harp concert, and much more. There are days when Terry can get out and about, shopping or visiting friends with me as driver and aide. Often she need help with her balance or gets too weak to stand for long. The medication causes difficult side-effects and is less effective as time goes on. Radiation to the tumors in her brain are scheduled for late March and she should see much improvement after that. The tumors cause inflammation which causes terrible headache (the first symptom she had) and confusion.
Beginning at the beginning is easier for the reader, but the writer must sometimes write from where the writing starts and hope to fill in the rest later. And the writer is now here. Just being here.
Now click on the "April" links in the menu to the right to get to the rest of the blog.
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