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.

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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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