A little while ago I was writing a letter to some friends who have walked alongside me through the past year and I began thinking about miracles. We so badly wanted the miracle of Ramsy surviving this tumor that is really not survivable. We asked for this one many times, and we know that many others asked on our behalf as well. I still wish we could have been given this spectacular one.
And yet-
even though we didn't receive this most longed-for miracle, God was (and is) at work in us and around us in ways that cannot be ignored or denied. So I would like to take some time to tell you about the miracles that we did get.
Our finances were in good shape when Ramsy was diagnosed, and because the church conference has such excellent benefits for its employees, there was not much adjusting that needed to be done in our day-to-day budget while he was on long-term disability. But of course, critical illness adds many extra expenses that have the potential to become a huge burden for the affected family. We were humbled over and over by gifts from people- friends, family, strangers- that allowed us to cover these expenses without having to go into debt. This is one miracle.
Not only did we have almost all good weather during the 6 winter weeks we had to drive into Winnipeg for radiation treatments (about an hour's drive from our door to Cancer Care), but we had NO car accidents. Not even a fender-bender. Another miracle.
During Ramsy's entire illness, our family suffered from very few viruses or infections. I think we each had a cold maybe once. Since October, the kids and I have already had way more sickness than that! Another miracle.
Our hearts remained soft and trusting towards God and each other. Somehow we did not suffer with bitterness or resentment. Somehow we were able to see God's heart towards us in spite of the circumstances, and to hear his reassuring voice over and over. This I truly do not understand, and to me it is one of the biggest miracles.
Ramsy retained his comprehension of language and daily tasks until just a couple of months before he died. Part of his tumor was located in the area controlling expressive language- being able to put thoughts into written or spoken words- and this was obviously significantly affected; however, the tumor was also directly adjacent to the area controlling the ability to understand language, and when he went in May to see the neurosurgeon who operated the previous November, the surgeon was very surprised to see that Ramsy's comprehension was still completely intact. I wonder now whether this was perhaps a hidden miracle, the result of the many prayers we all prayed. Maybe without those requests, his comprehension would have disappeared much earlier. We can't know that for sure, but what I do know for sure is what a huge gift it was to have him understand me even when he could no longer say anything other than "yes" or "no". Another miracle.
And the last one, maybe the biggest one of all: me walking around, breathing, living. It's a crazy mystery to me that I can function at all with half of me missing, crazy that I can find joy and that I am visited by peace. People have told me that I am a strong person, but I know that I am not this strong. This comes from outside of me. This comes from the one who is able to do things far beyond what we can ask or even dream up.
I feel that in talking about this I have to look at a difficult question: when we say that these good things come from God, what does that mean in the cases where the good things are missing? What about families who experience crushing debt, or terrible bitterness or fear, or years and years of agonizing pain? Does that mean that God is not with them, that he does not bless them or grant them miracles? I don't mean to imply this at all, and I am well aware that this is a painful question for many, many of us. The only answer I have is, "I don't think so." But I have no explanation for it. I just don't. It's so puzzling. The question of why God refrains from intervening in ways that we would wish is a deep, ancient question which has never been answered to our satisfaction. The only thing I know is not to take these good things for granted, because I have seen that they don't always happen. I am deeply grateful for the good things, and humbled that we have received them.
And here's another wild thought: I look at this amazing list of miracles and think, "And these are only the ones that I know about." I believe that God was (and is) also at work in ways that are invisible to me. I will not know about those in this lifetime, but I think that when I get to see him, he will also allow me to see those many invisible graces. Sometimes I feel like he is pouring little pieces of coloured plastic and beads into my hands, showing me that he is making a fantastically gorgeous kaleidoscope- not showing me what he is making, only that he is making. On the day that all those pieces are displayed in glorious, intricate colour and pattern, I believe that I will be astonished at the beauty of what he has done.
This gives me hope.
Friday, December 30, 2011
Wednesday, December 21, 2011
Christmas
I love mail. I love snail mail and email both, and I love going to either mailbox this time of year and seeing what is waiting for me there. The written word is powerful, and I am grateful for the many people who take the time to share themselves with me in that way. Ashley, thank you for your lovely card- I hope to meet you someday!
Many have asked how we are finding this Christmas season. In some ways, last Christmas was our first Christmas with loss, as Ramsy and I had given up working, our social activities became severely restricted, Ramsy was experiencing seizures and increasing symptoms with language and motor skills, and the future was a giant blur of fog. I think because of all of that, this year's Christmas has not been crushingly difficult, but rather has felt like a pair of shoes that has suddenly become too small. I know I loved wearing these shoes, I know I have usually felt good wearing them, but when I put them on and try to walk in them as I did before, they pinch.
When I pass our Christmas tree, lit up in the dark and smelling amazing, I think of Ramsy inviting me to join him on the couch to look at it, and there is a pinch. When I hear his favourite version of "Silent Night" on MercyMe's Christmas album, I remember him cranking it up in our van the first time he heard it, and it pinches again. When I spent time in Polo Park Mall, where we often did gift shopping or, more typical in the last year, had lunch in the food court and did one errand after a Cancer Care appointment, there were many pinches. Those parts are hard. But I still love our tree, and I still listen to Christmas music (although pretty selectively!), and I am still happy to be able to treat my family to gifts, and I will wear these shoes this year anyway, knowing that by next year they may have grown a little bigger again.
The song my heart sings this year is one that fits me now in a different way than it has fit in the past, but it does not pinch:
O come, o come, Emmanuel
and ransom captive Israel
that mourns in lonely exile here
until the Son of God appear.
O come, thou Dayspring,
come and cheer our spirits by thine advent here.
Disperse the gloomy clouds of night,
and death's dark shadows put to flight.
Peace to you, near and far.
Shannon
Many have asked how we are finding this Christmas season. In some ways, last Christmas was our first Christmas with loss, as Ramsy and I had given up working, our social activities became severely restricted, Ramsy was experiencing seizures and increasing symptoms with language and motor skills, and the future was a giant blur of fog. I think because of all of that, this year's Christmas has not been crushingly difficult, but rather has felt like a pair of shoes that has suddenly become too small. I know I loved wearing these shoes, I know I have usually felt good wearing them, but when I put them on and try to walk in them as I did before, they pinch.
When I pass our Christmas tree, lit up in the dark and smelling amazing, I think of Ramsy inviting me to join him on the couch to look at it, and there is a pinch. When I hear his favourite version of "Silent Night" on MercyMe's Christmas album, I remember him cranking it up in our van the first time he heard it, and it pinches again. When I spent time in Polo Park Mall, where we often did gift shopping or, more typical in the last year, had lunch in the food court and did one errand after a Cancer Care appointment, there were many pinches. Those parts are hard. But I still love our tree, and I still listen to Christmas music (although pretty selectively!), and I am still happy to be able to treat my family to gifts, and I will wear these shoes this year anyway, knowing that by next year they may have grown a little bigger again.
The song my heart sings this year is one that fits me now in a different way than it has fit in the past, but it does not pinch:
O come, o come, Emmanuel
and ransom captive Israel
that mourns in lonely exile here
until the Son of God appear.
O come, thou Dayspring,
come and cheer our spirits by thine advent here.
Disperse the gloomy clouds of night,
and death's dark shadows put to flight.
Peace to you, near and far.
Shannon
Wednesday, December 14, 2011
How are you doing?
"How are you doing?"
One of the most commonly-voiced questions in our society. Often someone will ask me that out of plain old social conditioning and then suck in their breath and say, “Oh, that was a dumb thing to say- sorry!” To me it is not a dumb question. It’s a convention we use, and it gives me an opening to say how I am really doing right then, or, in the cases where it’s not a great moment for personal sharing (we are in a rush, one of us is busy with something, the tears are too close to the surface for conversation) it allows me to say, “I’m okay today,” and just move on.
The way I have come to think about “how I am doing” is something like, “I am doing as I should be.” By this I mean that I expect to be sad and lonely and restless; I expect that nothing will feel the same as it used to; I expect that I will actually feel this enormous loss. I am not afraid of feeling sad. I think I am a little afraid of feeling flat and dull, but that is part of the deal sometimes. When I took pre-natal classes 16 years ago, the instructor told us that when the labor pains would come, we should try to relax into the pain, not to fight it. Easier said than done, in my case anyway. But although it was really hard to do that with physical pain, I am finding that I am more able to do it with this pain of loss. I don’t know why- maybe it is a skill that God is giving me just for this time.
The interesting thing is that many, many of the books/websites/articles on grief that I have come across seem to take the opposite approach. There is a definite sense that people (whoever is writing these resources, and also a few people that I encounter) want me to feel “better”. Sometimes I think this is a result of the medium- magazine articles have to wrap it up quickly, for example, and this can cause a bumper-stickerish feeling. “Let’s learn to move past our grief! Let’s find the moral of the story! Let’s think of God as our husband!” It kind of makes me want to throw up- or else throw something. Sometimes I sense that a person I am talking with is simply not comfortable with my references to loss, for whatever reason. That’s ok- not everyone can live in that space.
I have been very thankful to find a couple of books which have not given me the impression that I should rush through this phase as quickly as possible. One is a picture book called Tear Soup, given to our family by a friend on the day of the funeral. One is C.S. Lewis’ A Grief Observed. Another is A Healing Place by Kate Atwood. She lost her mother at age 12 and now, as an adult, runs a grief group for kids in Georgia. One of the most helpful things that I found in her book is her comment that grief is not a project, not a task to be completed; rather, it is something that the kids and I will encounter repeatedly through our lives, meeting our loss in different ways over the years, and we must work on learning to navigate it.
Here’s another interesting thing: much of this grieving process, so far, has not looked the way I expected it would look. Yes, I am sad, but I am not flattened as I expected I would be. I get out of bed in the mornings. I get dressed. I go out. I stay home alone and am okay. I pay the bills and grocery shop (with enormous mental effort, however!) and play the piano and write letters and do all these things I did not think I would be able to do. It constantly astonishes me. I find myself in a moment which is difficult- say, my first lunch out alone in a sit-down restaurant- and it is terribly painful; yet in the same moment, I am also observing myself with surprise and saying, “Huh. This hurts, but here I still am. I am doing this thing and it is not killing me. How strange.” I don’t understand where this ability to navigate comes from, except that it too is a gift from God to me.
And stranger still: alternating with the moments of excruciating loss and of everyday normalcy are moments of great joy and sometimes excitement. These come, to my surprise (again!), when I think of Ramsy being in the presence of Jesus, more alive, more real, more himself than ever before. Sometimes the veil between this reality and that one seems very thin indeed, and I am full of awareness that he is solidly real on the other side of the veil. I like to do what I call “making up stories” about what he is doing in Heaven. I might imagine him directing the most exquisite choir, or golfing with his dad, or hanging out at Starbucks with Jesus and maybe Beethoven, or casting his golden crown at the feet of The One Who Sits on the Throne. The joy also shows up when I think of what God is up to on both sides of the veil, when I get to see glimpses of and participate in his work here- the work of building or restoring relationships, showing kindness and compassion, sharing time or money or cookies, allowing him to refine me- and when I think of the end of this chapter of the story, of the day when Jesus will come back to set things right and fully restore his kingdom, and I will get to see him and join Ramsy and other dearly loved people in unending rightness and joy and satisfaction.
All of these feelings weave in and around each other, usually every day. Some days are mostly sad, some are mostly “regular”, some are mostly joyful. I cannot see any pattern to the way I flip-flop between them, or predict what will cause me to switch perspectives. I just have to live in the “and yet”- I feel the joy, and yet the sorrow waves through me as I am stricken with the remembrance that he was just here a little while ago, solidly real on this side of the veil; I feel so sad, and yet here I unarguably am, living. And yet…
Friday, December 2, 2011
The time thing
Ok, I have finally found a way to describe the way time feels so relative these days, the way that Ramsy's absence feels far longer than two months even though the days do not drag, the way that a day from a year ago seems more recent than the day of his death. It has to do with memories and how they occur. Instead of the habitual manner of particular memories being more vivid or less vivid according to their place in chronological time- typically more vivid if more recent- this is how I experience them right now:
I am in a darkened circular room. There is no furniture; I am just standing in the middle. On the walls are scattered squares of light and colour, like a whole bunch of slides projected in random fashion, some overlapping. All of them are at least slightly out of focus, and some of the images are very blurry. As I wait, one of the images jumps into sharp focus. It might be something Ramsy and I did together in the past year- oh, it's me bringing him a drink of water in the radiation waiting room, or leaning out the van window at the Burger King drive-through to get him a Whopper (one of the only things that tasted good to him while he was on chemo), or him lying in the hospital bed after his biopsy while I read to him. That slide might stay lit up for a whole hour, or fade in and out of focus over a day, or just flash for a moment. Then there's a picture of us walking side-by-side in Seattle the first time we spent the day together alone, or one of him laughing at my pitiful volleyball efforts on choir tour in 1990, or the two of us ice skating at the Bessborough hotel on New Year's Eve 1991 and making plans for our spring wedding. Then one of him holding our newborn daughter in 2000... coaching our son's soccer team five years ago... knocking out a wall in our first house in Kelowna... sitting in his wheelchair in our kitchen here washing dishes with his one working hand... leading singing at his brother's wedding in 1997... driving his '88 (I think) Mazda 626 with the fan full blast on "cool" and his sleeves rolled up but the windows shut tight because the wind's noise makes conversation impossible... playing guitar accompaniment for our eldest daughter's solo last October...
No matter what year that memory was made, when that slide is in focus, it is right here, like it happened yesterday or is maybe happening right now. When a slide is out of focus, it feels like a dream or something that happened very long ago. Occasionally it's possible to bring a slide into focus myself by reading an old letter or looking at actual photographs, but most often these images appear and fade according to their own mysterious pattern. Sometimes it's painful to see what shows up, and I feel something contract under my ribs; sometimes I am given the gift of laughter or joy with the picture; almost always, whatever it is, it's unpredictable and fascinating.
I am in a darkened circular room. There is no furniture; I am just standing in the middle. On the walls are scattered squares of light and colour, like a whole bunch of slides projected in random fashion, some overlapping. All of them are at least slightly out of focus, and some of the images are very blurry. As I wait, one of the images jumps into sharp focus. It might be something Ramsy and I did together in the past year- oh, it's me bringing him a drink of water in the radiation waiting room, or leaning out the van window at the Burger King drive-through to get him a Whopper (one of the only things that tasted good to him while he was on chemo), or him lying in the hospital bed after his biopsy while I read to him. That slide might stay lit up for a whole hour, or fade in and out of focus over a day, or just flash for a moment. Then there's a picture of us walking side-by-side in Seattle the first time we spent the day together alone, or one of him laughing at my pitiful volleyball efforts on choir tour in 1990, or the two of us ice skating at the Bessborough hotel on New Year's Eve 1991 and making plans for our spring wedding. Then one of him holding our newborn daughter in 2000... coaching our son's soccer team five years ago... knocking out a wall in our first house in Kelowna... sitting in his wheelchair in our kitchen here washing dishes with his one working hand... leading singing at his brother's wedding in 1997... driving his '88 (I think) Mazda 626 with the fan full blast on "cool" and his sleeves rolled up but the windows shut tight because the wind's noise makes conversation impossible... playing guitar accompaniment for our eldest daughter's solo last October...
No matter what year that memory was made, when that slide is in focus, it is right here, like it happened yesterday or is maybe happening right now. When a slide is out of focus, it feels like a dream or something that happened very long ago. Occasionally it's possible to bring a slide into focus myself by reading an old letter or looking at actual photographs, but most often these images appear and fade according to their own mysterious pattern. Sometimes it's painful to see what shows up, and I feel something contract under my ribs; sometimes I am given the gift of laughter or joy with the picture; almost always, whatever it is, it's unpredictable and fascinating.
Tuesday, November 29, 2011
Hello, junior high
Today my calendar tells me it's two months since Ramsy died, but time is such a crazy thing. (I know there's a great quote from Einstein about relativity that would fit here, but you'll have to google it yourself.) I can't really explain how it feels to me except to say that having Ramsy with me feels like a different lifetime. The kids and I are managing, but every day is different, and we feel his absence in different ways each week. I didn't know in advance that these two states could exist in me simultaneously: I am never not missing him, and at the same time a fair percentage of life feels what I suppose I would call "normal". Grief is so odd.
From time to time someone will ask me what the hardest parts are of walking through this loss. Depending on the day (or the minute) I will have a different answer, but one of the consistently difficult things is this: living with the junior high version of myself all the time. At age 40, I had finally learned to quiet and/or ignore that little insecure, hesitant 12-year-old girl who would pop up in me on occasion. Experience had taught me that mostly she worried without real cause, and that she could just relax and be a real grown-up person. What a relief that was!
Well, she's back. And she's noisy. She keeps repeating to me those hurtful things that other junior high kids said to me in the 80s- your stories are boring, you talk too much, nobody wants to sit with you, you're so weird/annoying/goofy-looking. (Ok, so it's true that at some point in the 80s we were all goofy-looking.) Since I have had practice in telling this little person to be quiet, that she's mistaken, that we will just go ahead and be ourselves, I am often successful in calming her down. But it takes energy. Also, the junior high me has feelings which are what I can only call rawer (is that even a word? Raw-er, as in more raw) versions of my regular emotions. She has internal temper tantrums, she agonizes over the smallest decision, she wishes for something but when she receives it she sulkily shoves it away because she cannot really have the one thing she most wants. She is sadly lacking in the mental filters which normally provide a bit of a cushion against the yo-yoing feelings. Frankly, I don't like living with her. I much preferred Ramsy's company.
The other part of this junior high state of being which is so difficult to manage is this: having been a pastor's wife for 19 years, I had trained myself to become a good listener (I hope) and to be mindful that a conversation is when two people get to talk and share stories, when there is give and take on both sides. This is something I have worked and worked on for my whole adult life. Now, suddenly, I am thrust into a space where I have a great need to talk- and worse, in my opinion, to repeat the same things over and over, to retell stories in intricate detail which is very likely tiresome to the other person, to talk about me and my experience and what I am learning and feeling. How do you allow yourself to be this person who you have tried so hard not to be?
Here's the bottom line: it is hard to need people instead of being the person who people need. I don't think this is a pride issue- it is just hard to require something of people, to wish desperately that they will be tolerant of you and endure this terrible time with you and not be worn out. It is hard to need people but not be sure that they want to be needed. It is hard to suddenly be 12 again (I had begun to refer to this as "the larval stage" while I was teaching and dealing with adolescents last year!) instead of an actual adult human being. I frequently feel as if I am walking around with all my feelings displayed on the outside of my body- like I have no clothes or even skin on, like I have been flayed and pinned to a dissection board. And yet it does not feel right to me to run and hide.
The thing about life is that it keeps putting you into the same situation at different times and in different roles. I suspect that in this particular situation, right now we all feel a bit like we are back in junior high. When I have been in the role of friend or acquaintance of the grieving person, I have felt completely uncertain about what to say or do. Will I make it worse if I mention the loss? Is it tactless to acknowledge their sorrow in the gas station or the drugstore? Aren't I being presumptuous to assume that I know how they are feeling? I know for a fact that many times I have chosen to be silent when encountering hurting people out of fear that my words would be wrong or inadequate and cause further hurt. Now that I am taking a turn in the role of mourner, I find that I would rather hear something- even if it is simply, "I don't have any words," or, "I don't know what to say." These acknowledgements are greatly comforting to me. In the future, in the other role, I will choose to speak anyway- at least, I will when that junior high person inside can be persuaded that she is brave enough.
For now, it seems all I can do is continue to alternate between reassuring that 12-year-old and sending her to her room. Maybe one day down the road she will grow up again. Can't wait for graduation day.
From time to time someone will ask me what the hardest parts are of walking through this loss. Depending on the day (or the minute) I will have a different answer, but one of the consistently difficult things is this: living with the junior high version of myself all the time. At age 40, I had finally learned to quiet and/or ignore that little insecure, hesitant 12-year-old girl who would pop up in me on occasion. Experience had taught me that mostly she worried without real cause, and that she could just relax and be a real grown-up person. What a relief that was!
Well, she's back. And she's noisy. She keeps repeating to me those hurtful things that other junior high kids said to me in the 80s- your stories are boring, you talk too much, nobody wants to sit with you, you're so weird/annoying/goofy-looking. (Ok, so it's true that at some point in the 80s we were all goofy-looking.) Since I have had practice in telling this little person to be quiet, that she's mistaken, that we will just go ahead and be ourselves, I am often successful in calming her down. But it takes energy. Also, the junior high me has feelings which are what I can only call rawer (is that even a word? Raw-er, as in more raw) versions of my regular emotions. She has internal temper tantrums, she agonizes over the smallest decision, she wishes for something but when she receives it she sulkily shoves it away because she cannot really have the one thing she most wants. She is sadly lacking in the mental filters which normally provide a bit of a cushion against the yo-yoing feelings. Frankly, I don't like living with her. I much preferred Ramsy's company.
The other part of this junior high state of being which is so difficult to manage is this: having been a pastor's wife for 19 years, I had trained myself to become a good listener (I hope) and to be mindful that a conversation is when two people get to talk and share stories, when there is give and take on both sides. This is something I have worked and worked on for my whole adult life. Now, suddenly, I am thrust into a space where I have a great need to talk- and worse, in my opinion, to repeat the same things over and over, to retell stories in intricate detail which is very likely tiresome to the other person, to talk about me and my experience and what I am learning and feeling. How do you allow yourself to be this person who you have tried so hard not to be?
Here's the bottom line: it is hard to need people instead of being the person who people need. I don't think this is a pride issue- it is just hard to require something of people, to wish desperately that they will be tolerant of you and endure this terrible time with you and not be worn out. It is hard to need people but not be sure that they want to be needed. It is hard to suddenly be 12 again (I had begun to refer to this as "the larval stage" while I was teaching and dealing with adolescents last year!) instead of an actual adult human being. I frequently feel as if I am walking around with all my feelings displayed on the outside of my body- like I have no clothes or even skin on, like I have been flayed and pinned to a dissection board. And yet it does not feel right to me to run and hide.
The thing about life is that it keeps putting you into the same situation at different times and in different roles. I suspect that in this particular situation, right now we all feel a bit like we are back in junior high. When I have been in the role of friend or acquaintance of the grieving person, I have felt completely uncertain about what to say or do. Will I make it worse if I mention the loss? Is it tactless to acknowledge their sorrow in the gas station or the drugstore? Aren't I being presumptuous to assume that I know how they are feeling? I know for a fact that many times I have chosen to be silent when encountering hurting people out of fear that my words would be wrong or inadequate and cause further hurt. Now that I am taking a turn in the role of mourner, I find that I would rather hear something- even if it is simply, "I don't have any words," or, "I don't know what to say." These acknowledgements are greatly comforting to me. In the future, in the other role, I will choose to speak anyway- at least, I will when that junior high person inside can be persuaded that she is brave enough.
For now, it seems all I can do is continue to alternate between reassuring that 12-year-old and sending her to her room. Maybe one day down the road she will grow up again. Can't wait for graduation day.
Friday, November 18, 2011
New playlist
One of the things that has always worked to get my mind and my emotions processing together is listening to music. Certain songs can change my mood instantly, or get me thinking of something inside myself that I am trying to keep covered up or avoid looking at, or bring back any number of memories. It comes as no surprise to me, then, that music is such a huge part of my days as I wade through my feelings. Sometimes I feel that I desperately need to cry but the tears won't run; well, I know which songs to play to fix that. Sometimes I want to remember Ramsy's and my romance; got it! Sometimes I need to pray but don't have words; songs will help my spirit to speak anyway. So here's what I listen to over and over right now. If you're looking for something new for your own playlist, you can check out most of these on iTunes.
Songs that remind me of or tell part of our own particular love story:
Andrew Peterson's Dancing in the Minefields
Michael Buble's Just Haven't Met You Yet
Sting's When We Dance
Sara Groves' Fly
The Jonas Brothers' Lovebug (Yes, there is actually a Jos. Bros. song on my playlist.)
Andrew Allen's I Want You
Matt Nathanson's Faster
Songs that speak of loss or struggle or separation:
Simple Plan's Jet Lag
Amanda Falk's Fireflies
Starfield's Something to Say
Amy Grant's Missing You
Matt Nathanson's Come on Get Higher
Steven Curtis Chapman's Heaven is the Face
Songs that remind me of God's big story, and how he is at work in me and in the world, and what the end of the story looks like:
Bebo Norman's Ruins (and lots of his other songs)
Brian Doerksen's Holy God
MercyMe's I Can Only Imagine
Steven Curtis Chapman's My Surrender
Handel's Messiah
Chris Tomlin's Our God
Songs that remind me of or tell part of our own particular love story:
Andrew Peterson's Dancing in the Minefields
Michael Buble's Just Haven't Met You Yet
Sting's When We Dance
Sara Groves' Fly
The Jonas Brothers' Lovebug (Yes, there is actually a Jos. Bros. song on my playlist.)
Andrew Allen's I Want You
Matt Nathanson's Faster
Songs that speak of loss or struggle or separation:
Simple Plan's Jet Lag
Amanda Falk's Fireflies
Starfield's Something to Say
Amy Grant's Missing You
Matt Nathanson's Come on Get Higher
Steven Curtis Chapman's Heaven is the Face
Songs that remind me of God's big story, and how he is at work in me and in the world, and what the end of the story looks like:
Bebo Norman's Ruins (and lots of his other songs)
Brian Doerksen's Holy God
MercyMe's I Can Only Imagine
Steven Curtis Chapman's My Surrender
Handel's Messiah
Chris Tomlin's Our God
Monday, November 14, 2011
Wish everyone could know
Been thinking of things that I wish everyone could know. Some of this stuff will sound familiar, because they are thoughts that I touched on in other posts, and thoughts I have shared with a few people as I process everything in my mind. Some of it might be new to you. I wish the words existed that would accurately express the depth of my feeling, but I'll just do the best I can with the tools I have.
What I wish everyone in the world could know:
-how much delight Ramsy and I took in each other. It is a great mystery and joy to me that we found each other. I have been telling this story over and over to different people (anybody who'll listen, pretty much!) and to myself, because it seems so magical to me. It truly feels like a fairy tale, but better because it was real. We belonged together like puzzle pieces, but we had to do the hard work of allowing the ragged edges to be sanded off as we got to know each other more and more. That kind of thing is always painful and sometimes scary; nevertheless, the end result is always something better, something good accomplished, and we knew that the deep relationship we shared was a product of the hard work we had put into it. I love that even 19 years into marriage, we were crazy about each other and each of us was convinced that we were "the lucky one". I love that we had grown to know each other so well that once he had trouble talking, I could finish sentences for him when necessary, or even guess what sentence he wanted to start! (And we could laugh really hard at the times when I was waaaay off what he was thinking!)
-what an enormous privilege it was to be allowed to take care of him through the last year. At times it was physically and emotionally daunting. At times it was profoundly painful: kneeling at my husband's feet to put on his socks for him, lifting each foot and threading it through a pantleg, was indescribably poignant and so hauntingly reminiscent of dressing our babies- the ones you are supposed to have to help with this- that it frequently brought tears. In the summer, when he had begun to be confused about doing daily tasks, and I would find him standing in the bathroom staring at the sink faucet and his toothbrush, I was so grateful to be able to be near him to set him at ease, to gently give him a hint about what came next, or, eventually, to take the burden of the task off of him. Often these moments felt deeply holy to me. Many times as I cared for him, I prayed that somehow the honour and gratitude and deep love that I felt would be made visible to him through these small sacrifices.
-the immense pride I have in Ramsy. He was such a remarkable person: funny, kind, adventurous, brave, goofy, talented, thoughtful, all those great things. And alongside that, I want to acknowledge that life is messy. People are messy. We are a mass of contradictory feelings and habits and we are often very poor at saying what we mean. We rub each other the wrong way. We take offense where none is meant. We hurt people unintentionally, or sometimes with intent. We are unfinished products, hopefully growing and learning from our experiences and mistakes and decisions. Ramsy was the same as the rest of us- messy. But having lived with him for nearly 20 years, having seen him both as a private and a public individual, I can tell you that he was a man of integrity. He knew he was a work-in-progress, and he was always deeply sorry when that caused hurt to another person. He went out of his way to apologize and ask forgiveness when he was aware of this. He always, always strove to grow and change and learn, asking God what needed to be different in his heart and life, putting energy into making those changes happen. He did this at work and with his friends and in his home. I love knowing that now he is able to be at rest in his spirit, that Jesus is telling Ramsy how proud he is of him.
-how cemented many beliefs have become for me through this experience. As a person who was taught about God from pretty much the first Sunday that I was alive, I had to take many of those teachings on plain trust since I did not have the experience to back up the beliefs. Through this season of experience I have come to understand in a new way and to a new depth that God truly gives us gifts simply because of who he is, not because of what we do or refrain from doing; that he intends good for us and will accomplish it despite any appearances to the contrary; that he loves me and hears me and speaks to me. These things and more have become absolutely certain to me over the last year; I know them in the same way that I know there is oxygen in the air around me, or that gravity holds us to the earth. How strange that I could learn these things as the earth was shaking under my feet and the mountains were falling into the sea....
What I wish everyone in the world could know:
-how much delight Ramsy and I took in each other. It is a great mystery and joy to me that we found each other. I have been telling this story over and over to different people (anybody who'll listen, pretty much!) and to myself, because it seems so magical to me. It truly feels like a fairy tale, but better because it was real. We belonged together like puzzle pieces, but we had to do the hard work of allowing the ragged edges to be sanded off as we got to know each other more and more. That kind of thing is always painful and sometimes scary; nevertheless, the end result is always something better, something good accomplished, and we knew that the deep relationship we shared was a product of the hard work we had put into it. I love that even 19 years into marriage, we were crazy about each other and each of us was convinced that we were "the lucky one". I love that we had grown to know each other so well that once he had trouble talking, I could finish sentences for him when necessary, or even guess what sentence he wanted to start! (And we could laugh really hard at the times when I was waaaay off what he was thinking!)
-what an enormous privilege it was to be allowed to take care of him through the last year. At times it was physically and emotionally daunting. At times it was profoundly painful: kneeling at my husband's feet to put on his socks for him, lifting each foot and threading it through a pantleg, was indescribably poignant and so hauntingly reminiscent of dressing our babies- the ones you are supposed to have to help with this- that it frequently brought tears. In the summer, when he had begun to be confused about doing daily tasks, and I would find him standing in the bathroom staring at the sink faucet and his toothbrush, I was so grateful to be able to be near him to set him at ease, to gently give him a hint about what came next, or, eventually, to take the burden of the task off of him. Often these moments felt deeply holy to me. Many times as I cared for him, I prayed that somehow the honour and gratitude and deep love that I felt would be made visible to him through these small sacrifices.
-the immense pride I have in Ramsy. He was such a remarkable person: funny, kind, adventurous, brave, goofy, talented, thoughtful, all those great things. And alongside that, I want to acknowledge that life is messy. People are messy. We are a mass of contradictory feelings and habits and we are often very poor at saying what we mean. We rub each other the wrong way. We take offense where none is meant. We hurt people unintentionally, or sometimes with intent. We are unfinished products, hopefully growing and learning from our experiences and mistakes and decisions. Ramsy was the same as the rest of us- messy. But having lived with him for nearly 20 years, having seen him both as a private and a public individual, I can tell you that he was a man of integrity. He knew he was a work-in-progress, and he was always deeply sorry when that caused hurt to another person. He went out of his way to apologize and ask forgiveness when he was aware of this. He always, always strove to grow and change and learn, asking God what needed to be different in his heart and life, putting energy into making those changes happen. He did this at work and with his friends and in his home. I love knowing that now he is able to be at rest in his spirit, that Jesus is telling Ramsy how proud he is of him.
-how cemented many beliefs have become for me through this experience. As a person who was taught about God from pretty much the first Sunday that I was alive, I had to take many of those teachings on plain trust since I did not have the experience to back up the beliefs. Through this season of experience I have come to understand in a new way and to a new depth that God truly gives us gifts simply because of who he is, not because of what we do or refrain from doing; that he intends good for us and will accomplish it despite any appearances to the contrary; that he loves me and hears me and speaks to me. These things and more have become absolutely certain to me over the last year; I know them in the same way that I know there is oxygen in the air around me, or that gravity holds us to the earth. How strange that I could learn these things as the earth was shaking under my feet and the mountains were falling into the sea....
Saturday, November 5, 2011
Grab bag of thoughts
A bit of a mish-mash for today's post- some stuff I've been thinking about, been doing, been experiencing.
1) Foggy brain. I have heard other people talk about their grief-induced mental fog, and I have in no way been immune from it! I will be in the grocery store (one of my quirks is that I always make my grocery list in order of the way the items are laid out in the aisles and always follow the same route through the store so that I can get in and out quickly) and realize that I have been standing staring at the same shelf for a few minutes. I squint at whatever is in front of me and frown, and I actually have to go through this thought process: What is this? It's a red and white box. What is in the box? Scalloped potatoes. Is this something I buy? No. OK. What is this beside it in the blue and yellow box? I am no longer a fast grocery-shopper! Something I am learning the hard way: it is a very bad idea to stash something as I am heading out the door, thinking that I am putting it in a safe place. My kids say that they, too, have the foggy brain. They forget lunches, homework, chores, you name it. We're all in the same boat here! My mother-in-law assures me that in about a year, maybe, I "will stop putting shoes in the freezer and ice cream in the closet"!
2) Question for Aldersgate choir members from the 1990 tour: why is Chuck wearing a sling on his arm in the video of our Wenatchee, WA stop? Yes, there is a prize for whoever can answer this question. I have dug out of Ramsy's files a beautiful goldenrod-coloured poster of the choir splendidly arrayed in robes. Fantastic. As runner-up prizes I also have blank Celebration 1990 thank-you cards and assorted years of choir tour programs. Limited quantities only- so sad.
3) Our minds work in mysterious ways. It often seems to me so absurd that Ramsy is not ever coming back to pick up his guitar in the living room, or sit beside me in church, or watch a movie with me, or tell a corny joke. It doesn't seem sad, at certain times, just ridiculous or plain not possible. And yet I do not ever actually think that he is not dead. Our minds are so weird. Another thing: when I think of him during the day, my thoughts are almost all of him when he was well, but when I dream about him, which is pretty well every night, he is always sick. Strangely, this is not distressing to my dream self. Also, when I wake up after dreaming about him, I don't feel sad; I feel glad to have seen him. This is not how I expected to feel. In fact, almost nothing about this experience goes as I imagined it would. Things that I figure in advance will be hard often turn out to be quite easily manageable, but then I am blindsided by some small thing, like the smell of coffee in the church coffee room last Sunday morning. All of a sudden my hands were shaking and I couldn't see through the tears or decide what I wanted to drink- totally unexpected.
4) Rituals, or perhaps I should say symbolic gestures, help. Sometimes I do drink coffee, which I don't actually like, just because I want to remember Ramsy and do something that he loved. Stuff like that.
5) Every day is different. There seems to be no pattern to how I feel from day to day. I might have a really hard day on Tuesday, and then wake up Wednesday feeling happy and energetic. And then Wednesday afternoon the dreaded fog may set in. I never know what to expect. But because I am not pressured in terms of time- I have no deadline for needing to go back to work- it's ok. I can get stuff done on the easier days, and just be sad and write and talk with friends and listen to music or whatever on the harder days. I am so thankful for that!
6) I need to talk about him constantly. I do a lot of this by writing, but I am a person who learns and processes by telling stories and sharing experiences, and much of this needs to be done in conversation with others. So please, if you are talking with me, do not be afraid to mention him or ask about him! Also, please be patient with me as I run off at the mouth- I don't mean to take over the conversation, it's just that I miss him so much. I have so appreciated hearing from old friends (and newer ones, too). Thank you!
7) Last thought- this post is getting long! I heard a lovely story the other day about Ramsy being absolutely absorbed in worship, wiping his tears on his sweater and not caring at all. I love this story, partly because it is so typical of him and seems very familiar to me, but also because it reminds me of how passionately Ramsy loved God and would talk, over the years, about how much he wished for Heaven where everything is made right. I always thought I would feel angry if Ramsy got to go there first and I had to stay here, but in keeping with the "expect the unexpected" theme, instead I feel a profound joy that he is doing the very thing he always longed to do. Another mystery.
1) Foggy brain. I have heard other people talk about their grief-induced mental fog, and I have in no way been immune from it! I will be in the grocery store (one of my quirks is that I always make my grocery list in order of the way the items are laid out in the aisles and always follow the same route through the store so that I can get in and out quickly) and realize that I have been standing staring at the same shelf for a few minutes. I squint at whatever is in front of me and frown, and I actually have to go through this thought process: What is this? It's a red and white box. What is in the box? Scalloped potatoes. Is this something I buy? No. OK. What is this beside it in the blue and yellow box? I am no longer a fast grocery-shopper! Something I am learning the hard way: it is a very bad idea to stash something as I am heading out the door, thinking that I am putting it in a safe place. My kids say that they, too, have the foggy brain. They forget lunches, homework, chores, you name it. We're all in the same boat here! My mother-in-law assures me that in about a year, maybe, I "will stop putting shoes in the freezer and ice cream in the closet"!
2) Question for Aldersgate choir members from the 1990 tour: why is Chuck wearing a sling on his arm in the video of our Wenatchee, WA stop? Yes, there is a prize for whoever can answer this question. I have dug out of Ramsy's files a beautiful goldenrod-coloured poster of the choir splendidly arrayed in robes. Fantastic. As runner-up prizes I also have blank Celebration 1990 thank-you cards and assorted years of choir tour programs. Limited quantities only- so sad.
3) Our minds work in mysterious ways. It often seems to me so absurd that Ramsy is not ever coming back to pick up his guitar in the living room, or sit beside me in church, or watch a movie with me, or tell a corny joke. It doesn't seem sad, at certain times, just ridiculous or plain not possible. And yet I do not ever actually think that he is not dead. Our minds are so weird. Another thing: when I think of him during the day, my thoughts are almost all of him when he was well, but when I dream about him, which is pretty well every night, he is always sick. Strangely, this is not distressing to my dream self. Also, when I wake up after dreaming about him, I don't feel sad; I feel glad to have seen him. This is not how I expected to feel. In fact, almost nothing about this experience goes as I imagined it would. Things that I figure in advance will be hard often turn out to be quite easily manageable, but then I am blindsided by some small thing, like the smell of coffee in the church coffee room last Sunday morning. All of a sudden my hands were shaking and I couldn't see through the tears or decide what I wanted to drink- totally unexpected.
4) Rituals, or perhaps I should say symbolic gestures, help. Sometimes I do drink coffee, which I don't actually like, just because I want to remember Ramsy and do something that he loved. Stuff like that.
5) Every day is different. There seems to be no pattern to how I feel from day to day. I might have a really hard day on Tuesday, and then wake up Wednesday feeling happy and energetic. And then Wednesday afternoon the dreaded fog may set in. I never know what to expect. But because I am not pressured in terms of time- I have no deadline for needing to go back to work- it's ok. I can get stuff done on the easier days, and just be sad and write and talk with friends and listen to music or whatever on the harder days. I am so thankful for that!
6) I need to talk about him constantly. I do a lot of this by writing, but I am a person who learns and processes by telling stories and sharing experiences, and much of this needs to be done in conversation with others. So please, if you are talking with me, do not be afraid to mention him or ask about him! Also, please be patient with me as I run off at the mouth- I don't mean to take over the conversation, it's just that I miss him so much. I have so appreciated hearing from old friends (and newer ones, too). Thank you!
7) Last thought- this post is getting long! I heard a lovely story the other day about Ramsy being absolutely absorbed in worship, wiping his tears on his sweater and not caring at all. I love this story, partly because it is so typical of him and seems very familiar to me, but also because it reminds me of how passionately Ramsy loved God and would talk, over the years, about how much he wished for Heaven where everything is made right. I always thought I would feel angry if Ramsy got to go there first and I had to stay here, but in keeping with the "expect the unexpected" theme, instead I feel a profound joy that he is doing the very thing he always longed to do. Another mystery.
Friday, October 28, 2011
Someday
During the month since Ramsy died, I have spent a lot of time thinking and writing and reading and learning. One of the things that has been on my mind is the language that we use to describe times of crisis, or to comfort each other in times of crisis or loss. I love language and the different moods that can be created by the choice of words, but I have been struck many times over the past year by the realization that the words we use are so often inadequate to convey exactly what we feel or think.
One instance of this (and I cannot recall whether this phrase has been said to me personally, but I have heard it over the years here and there) is when we talk about "The Reason" that a sad event has occurred, as if there is only one. "We can't know The Reason why this had to happen," or "When we get to Heaven ourselves God will tell us The Reason for this tragedy." I think I understand what we mean when we say this, but looking through the lens of my recent experience, it sits uneasily. It is not quite enough, to my mind. It seems to reduce life to an equation, or a series of direct cause-and-effect events, or a chess game in which we are pawns to be sacrificed when necessary- and too bad for us. But life is so complex, the more so because we are spiritual beings living in a physical world that does not run the way it was designed to, and where we experience spiritual as well as physical sufferings. A simple answer to everything does not fit. What is The Reason the tsunami happened in southeast Asia a couple of years ago? What is The Reason for the terrible imbalance of wealth in the world? Who can give (or accept) a one-sentence explanation for Candace Derksen's death?
The kind of response that I sense in my mind and heart is in a song by Nichole Nordeman called "Someday":
I believe in the rest of the story
I believe there's still ink in the pen
I have wasted my very last day
Trying to change what happened way back when
I believe it's the human condition
We all need to have answers to "why"
More than ever I'm ready to say
That I will still sleep peacefully
With answers out of reach for me until
Someday all that's crazy, all that's unexplained
Will fall into place
And someday all that's hazy through a clouded glass
Will be clear at last
And sometimes we're just waiting
For someday
We are born with a lingering hunger
We are born to be unsatisfied
We are strangers who can't help but wander and dream
About the other side of someday
Every puzzle's missing piece
Every unsolved mystery
More than half of every whole
Rests in the Hand that holds you for someday
And someday all that's crazy, all that's unexplained
Will be beautiful, beautiful
And someday all that's hazy through a clouded glass
Will be clear at last
And sometimes we're just waiting
And waiting
For someday
This kind of response allows for the complexities of life, and the ups and downs of our feelings, and all kinds of mess. Did you see that line in the last chorus? And someday all that's crazy, all that's unexplained will be beautiful, beautiful! As a middle-aged woman, I have seen in my own life and in the lives of others the miracle of something beautiful arising out of horrible circumstances. Although I would not have chosen the painful experiences that I've had in my life, by walking through them I have become a more compassionate person; have made deep and lasting friendships; have had people added to my family whom I love; have learned who God is for myself instead of only hearing about him from others. Remembering this gives me hope that good things will continue to come even out of great sorrow if I allow my heart to remain open and soft.
Another thing to consider: as humans, we live inside the created structure of time, while God lives outside of that structure. To me this often-overlooked fact helps account for some of the great mysteries of our spiritual experience. I don't know how it works, and I don't know that anyone could explain it to me so I would understand (how does one explain to a goldfish that one day it will live outside of water?); but when I think of the time/non-time fact I am reassured that I don't really understand how the universe works and that I don't have to stretch to come up with answers to why things happen the way they do. I can rest in the "I don't know" and trust that someday- after I too have gone to live outside of time and hang out with Jesus and Ramsy- the things that I need to know will become clear to me, and that Jesus will show us all the beautiful things that came of this that we did not get to see here.
I don't know why I have to wait here so painfully while Ramsy has gone home ahead of me, but I believe that I would not understand any reasons right now even if they were shown to me. I think that's for Someday.
One instance of this (and I cannot recall whether this phrase has been said to me personally, but I have heard it over the years here and there) is when we talk about "The Reason" that a sad event has occurred, as if there is only one. "We can't know The Reason why this had to happen," or "When we get to Heaven ourselves God will tell us The Reason for this tragedy." I think I understand what we mean when we say this, but looking through the lens of my recent experience, it sits uneasily. It is not quite enough, to my mind. It seems to reduce life to an equation, or a series of direct cause-and-effect events, or a chess game in which we are pawns to be sacrificed when necessary- and too bad for us. But life is so complex, the more so because we are spiritual beings living in a physical world that does not run the way it was designed to, and where we experience spiritual as well as physical sufferings. A simple answer to everything does not fit. What is The Reason the tsunami happened in southeast Asia a couple of years ago? What is The Reason for the terrible imbalance of wealth in the world? Who can give (or accept) a one-sentence explanation for Candace Derksen's death?
The kind of response that I sense in my mind and heart is in a song by Nichole Nordeman called "Someday":
I believe in the rest of the story
I believe there's still ink in the pen
I have wasted my very last day
Trying to change what happened way back when
I believe it's the human condition
We all need to have answers to "why"
More than ever I'm ready to say
That I will still sleep peacefully
With answers out of reach for me until
Someday all that's crazy, all that's unexplained
Will fall into place
And someday all that's hazy through a clouded glass
Will be clear at last
And sometimes we're just waiting
For someday
We are born with a lingering hunger
We are born to be unsatisfied
We are strangers who can't help but wander and dream
About the other side of someday
Every puzzle's missing piece
Every unsolved mystery
More than half of every whole
Rests in the Hand that holds you for someday
And someday all that's crazy, all that's unexplained
Will be beautiful, beautiful
And someday all that's hazy through a clouded glass
Will be clear at last
And sometimes we're just waiting
And waiting
For someday
This kind of response allows for the complexities of life, and the ups and downs of our feelings, and all kinds of mess. Did you see that line in the last chorus? And someday all that's crazy, all that's unexplained will be beautiful, beautiful! As a middle-aged woman, I have seen in my own life and in the lives of others the miracle of something beautiful arising out of horrible circumstances. Although I would not have chosen the painful experiences that I've had in my life, by walking through them I have become a more compassionate person; have made deep and lasting friendships; have had people added to my family whom I love; have learned who God is for myself instead of only hearing about him from others. Remembering this gives me hope that good things will continue to come even out of great sorrow if I allow my heart to remain open and soft.
Another thing to consider: as humans, we live inside the created structure of time, while God lives outside of that structure. To me this often-overlooked fact helps account for some of the great mysteries of our spiritual experience. I don't know how it works, and I don't know that anyone could explain it to me so I would understand (how does one explain to a goldfish that one day it will live outside of water?); but when I think of the time/non-time fact I am reassured that I don't really understand how the universe works and that I don't have to stretch to come up with answers to why things happen the way they do. I can rest in the "I don't know" and trust that someday- after I too have gone to live outside of time and hang out with Jesus and Ramsy- the things that I need to know will become clear to me, and that Jesus will show us all the beautiful things that came of this that we did not get to see here.
I don't know why I have to wait here so painfully while Ramsy has gone home ahead of me, but I believe that I would not understand any reasons right now even if they were shown to me. I think that's for Someday.
Friday, October 21, 2011
These days
What I'm doing these days: being alone. Looking through memorabilia, reading old letters and journals, looking at pictures, watching videos of Ramsy's conducting days. Listening to songs that make me cry- on purpose.
Memories of him as he was before he got sick, and especially as he was when we met and were dating, have surfaced from the deep place they hid in order to allow me to make it through the last year moment by moment. I have loved re-discovering those early days of our relationship. When I read my journal entries describing our first day spent together, or a particular phone call or conversation, I can remember exactly how I felt then. I am delighted to discover that Ramsy was even kinder to me than I knew at the time, as a 19 year-old getting to know her first boyfriend. He was truly the other half of me. He saw the best things in me and devoted himself to loving me and helping those things come to life. I am astonished that he would choose me. I am profoundly grateful to God for the mercy he showed in giving me this man.
And now that I can remember, the deep sorrow wells up. I have lost him, and it is time to weep. So I will.
Memories of him as he was before he got sick, and especially as he was when we met and were dating, have surfaced from the deep place they hid in order to allow me to make it through the last year moment by moment. I have loved re-discovering those early days of our relationship. When I read my journal entries describing our first day spent together, or a particular phone call or conversation, I can remember exactly how I felt then. I am delighted to discover that Ramsy was even kinder to me than I knew at the time, as a 19 year-old getting to know her first boyfriend. He was truly the other half of me. He saw the best things in me and devoted himself to loving me and helping those things come to life. I am astonished that he would choose me. I am profoundly grateful to God for the mercy he showed in giving me this man.
And now that I can remember, the deep sorrow wells up. I have lost him, and it is time to weep. So I will.
Sunday, October 16, 2011
A request
It is late, and I should be sleeping so I can get up with my kids in the morning, but I want to write this short post. I am finding these days that I am full of memories of Ramsy, loving reading through our old letters or reminiscing, and so longing to talk about him as well as to hear others tell me about their experiences with him. If you happen to have something that you would be willing to share with me, please do send me stories or memories about him, from "old days" or newer ones, goofy or serious or whatever.
My mailing address:
Shannon Unruh
Box 310
Oakville, MB
R0H 0Y0
OK- going to bed.
My mailing address:
Shannon Unruh
Box 310
Oakville, MB
R0H 0Y0
OK- going to bed.
Saturday, October 15, 2011
50
Happy 50th birthday, my love. Maybe in Heaven, birthday cake is made of chips and coffee...
Love you. Miss you.
Love you. Miss you.
Monday, October 10, 2011
Thanksgiving
It is Thanksgiving Day here in Canada. In some moments, it is difficult to be thankful. When the pain is uppermost, I have wistfulness instead of gratitude; but the pain is not constant, and over the last almost-year, as we have traveled into the valley of the shadow of death, even as we continue wandering in that valley, we have been deeply thankful:
- that Ramsy suffered minimal pain. He had occasional headaches- not even every day, and mostly easily relieved by Tylenol 1s. We are very aware that this is not typical of a cancer experience, and we are grateful for this mercy.
- that the tumor did not interfere with his thoughtful, loving, easy-going nature. He retained the essence of his personality right to his last day.
- that he always knew exactly who we were.
- that the losses happened little by little. Although enduring a year of perpetual loss has been deeply painful, it allowed me to make adjustments in the household, plan ahead with Ramsy for our finances, learn how to manage or delegate many of the tasks that he had always done, and to slowly become accustomed to being without him. My heart aches for those of you who have had a loved one snatched away without warning.
- that our suffering was not the result of any meanness or viciousness or violence from another person. We have been surrounded by kindness.
- that we have public health care and excellent insurance from Ramsy's employer. Both of these, combined with the many gifts we have received, have allowed us to endure this illness and death without undue financial stress.
- that God is trustworthy even when we do not understand how he works or doesn't work. He promised me in the first days of Ramsy's illness that he would look after me no matter what, and so I can keep walking through this fog. He promised us that he has prepared a place for us with him, and that in that place everything will be made right and whole, so we can be glad for Ramsy and thankful for the confidence that we will also one day be at home there.
That is only a smattering of how we have experienced grace and mercy. I wish I had time and space and the memory to write it all down here, but I hope that gives a hint of what I want express.
So I say to you, who are in an easy part of your life, "Happy Thanksgiving," and I say to you, who are in pain too, "Happy Thanksgiving. If God has helped us, he will help you too."
Happy Thanksgiving.
Sunday, October 2, 2011
Obituary
C. Ramsy Unruh
Peacefully on Thursday, September 29, 2011, Ramsy Unruh, loving husband to Shannon and father to Katy, Tom and Jane, passed away just 16 days short of his 50th birthday.
Also left to treasure Ramsy’s memory are his mother Katy Unruh of Morden, MB; siblings Phil (Diane) Unruh of Carman, MB; Tim (Jeanette) Unruh of Whistler, BC; Noni (Phil) Goertzen of Langley, BC; Christine (Evan) Jennings of North Vancouver, BC ; parents-in-law Myrna Foster and Lloyd and Larraine Ratzlaff of Saskatoon, SK; sister-in-law Sheri (Rob) Porrelli of Saskatoon, SK; and many nieces and nephews. He was predeceased by his father Dr. Cornel Unruh.
Ramsy was born and raised in Morden, MB, but his musical interests led him around North America for training and work. He met Shannon while teaching music in Moose Jaw, SK, and they married in 1992. He became the music pastor at a church in Kelowna, BC that year, and then took the same position at a Winnipeg church in 1998. Through leading worship and working closely with his volunteers, he developed an interest in helping people with the highs and lows of life and accepted a job as senior pastor at Community Fellowship Church in Newton, MB.
Ramsy loved and was loved by children, and he was delighted when each of his kids were born. They enjoyed many adventures with him: bike riding, camping, bowling, driving to the Portage Tim Horton’s for donuts early in the morning. When they were small, he used to take them to Revy for Timbits and tell them stories he made up while they ate. He loved Shannon dearly and told and showed her that all the time in hundreds of thoughtful ways.
He was creative, adventurous, brave, sometimes stubborn, both gentle and bold, willing to admit when he was wrong and to learn from his mistakes. He was not perfect, nor did he pretend to be. He loved Jesus passionately, and delighted in his work as a pastor. He was never afraid to cry in public, and his boisterous laugh rang out in many a meeting or social event.
Ramsy endured the trial of his brain tumor with grace and humor, seldom showing self-pity, often thinking of others and concerned about how his illness created work for them. He often expressed wonder over the fact that people were interested in how he was doing or sent gifts or cards.
He died at home in his own bed, with Shannon and his three children around him, for which we are thankful. He will be sorely, deeply missed. We, his family, are so grateful for the outpouring of support from friends, church family, the extended Oakville community, medical network, and even strangers, that made this difficult journey bearable. Their many kindnesses will not be forgotten.
Viewing and Visitation will take place at Newton Community Fellowship Church from 7:00 to 8:00 pm on Wednesday, October 5, 2011.
Funeral Service will be held on Thursday, October 6, 2011 at the William Glesby Centre, Portage la Prairie at 1:00 pm.
As expressions of sympathy, if friends so wish, donations may be made in Ramsy’s memory to Mully Children’s Family Charitable Foundation (MCFCF), 864 Hurontario Street, Collingwood, ON L9Y 3Z1 or to Central Plains Cancer Care Services, 318 Sask.Ave.E, Portage la Prairie, MB, R1N OK8.
A tree will be planted in memory and cared for
by McKenzies Portage Funeral Chapel 857-4021
A message can be left in the on-line guest book at www.mckenziesportagefuneralchapel.com
Thursday, September 29, 2011
Sadder
This evening at 6:30 my sweet Ramsy breathed his last breath and went to live with Jesus. He died at home in his own bed, with me and the kids around him telling him that it was ok for him to go, and that he could just rest. It was a sweet time, just right for us. I am so glad that I could take care of him at home, and that he had so little pain. He was my favourite person, and my heart is breaking but I am also at peace.
We will post updates here over the next few days, letting you know about funeral plans and so on.
We will post updates here over the next few days, letting you know about funeral plans and so on.
Wednesday, September 28, 2011
How is Ramsy?
Hi again everyone,
Time for a little update. Ramsy has been home for a week and a half now, and we are so happy to have him here. I love to see the kids poke their heads in the door and say good morning to him, or ruffle his hair, or joke with him. The other night he was too tired to come to supper in the wheelchair, so we all ate in our bedroom while watching a Muppet Show episode, and our son perched beside his dad and periodically peered through the bed rails to check on him. I feel much more relaxed having Ramsy here with me all day, and not having to choose between home/kids and hospital/husband.
We are adjusting to the flexi-schedule of the home care visits. I think I have counted nine different ladies who come to our house as the week cycles through, and although we have been given a general time category for their visits (mid-morning, lunch-ish and supper-ish) the exact time varies within about an hour and a half from day to day. I am very grateful for their help with the physical care, and also for the help of the person we have hired to come each evening to get Ramsy ready for bed.
Today we had a visit from the traveling palliative care nurse, who came to take blood samples for testing. Ramsy has been having many petit-mal seizures over the last week (these simply cause his eyes to roll up or to jiggle back and forth rapidly), which is new. He has lost quite a bit of weight over the last three weeks, and it may be that his anti-seizure med dose is too high, which can actually cause seizures and other problems. In addition, he has just not been himself over the last couple of days. He's been extremely sleepy, only awake for maybe an hour and a half total each day, and very lethargic when awake. He still knows what's going on around him, though- that is very clear from his facial expressions, and tonight when I put my face close to his while saying good-night, he puckered his lips to kiss me. It makes me happy and breaks my heart at the same time.
Anyway, when the nurse was here she figured that he may have a lung infection (I forgot to say that he also has a bit of a cough, fever, and trouble swallowing), and she asked the palliative care doctor to come see us tomorrow to check out what medication Ramsy may need. I so hope that he will perk up after a few days of antibiotics or whatever is prescribed! No comas yet, please.
So that's where we're at for the moment. Visitors are still welcome for short periods of time (usually 10 minutes), although I need to be careful not to over-schedule him. I just ask that you give us a call first, and also that if you feel any hint of cold or flu, you would save your visit for later.
Time for a little update. Ramsy has been home for a week and a half now, and we are so happy to have him here. I love to see the kids poke their heads in the door and say good morning to him, or ruffle his hair, or joke with him. The other night he was too tired to come to supper in the wheelchair, so we all ate in our bedroom while watching a Muppet Show episode, and our son perched beside his dad and periodically peered through the bed rails to check on him. I feel much more relaxed having Ramsy here with me all day, and not having to choose between home/kids and hospital/husband.
We are adjusting to the flexi-schedule of the home care visits. I think I have counted nine different ladies who come to our house as the week cycles through, and although we have been given a general time category for their visits (mid-morning, lunch-ish and supper-ish) the exact time varies within about an hour and a half from day to day. I am very grateful for their help with the physical care, and also for the help of the person we have hired to come each evening to get Ramsy ready for bed.
Today we had a visit from the traveling palliative care nurse, who came to take blood samples for testing. Ramsy has been having many petit-mal seizures over the last week (these simply cause his eyes to roll up or to jiggle back and forth rapidly), which is new. He has lost quite a bit of weight over the last three weeks, and it may be that his anti-seizure med dose is too high, which can actually cause seizures and other problems. In addition, he has just not been himself over the last couple of days. He's been extremely sleepy, only awake for maybe an hour and a half total each day, and very lethargic when awake. He still knows what's going on around him, though- that is very clear from his facial expressions, and tonight when I put my face close to his while saying good-night, he puckered his lips to kiss me. It makes me happy and breaks my heart at the same time.
Anyway, when the nurse was here she figured that he may have a lung infection (I forgot to say that he also has a bit of a cough, fever, and trouble swallowing), and she asked the palliative care doctor to come see us tomorrow to check out what medication Ramsy may need. I so hope that he will perk up after a few days of antibiotics or whatever is prescribed! No comas yet, please.
So that's where we're at for the moment. Visitors are still welcome for short periods of time (usually 10 minutes), although I need to be careful not to over-schedule him. I just ask that you give us a call first, and also that if you feel any hint of cold or flu, you would save your visit for later.
Sunday, September 18, 2011
Back home!
We have just got Ramsy back home and settled in his own bed and he is already asleep! When I got to the hospital this morning I asked if he had slept well and he shook his head pretty emphatically, so I am hoping he will nap well now. Instead of hearing carts rattling past, paging calls, people talking and laughing in the halls, and the poor dear lady down the hall we dubbed "The Parrot" ("Nurse! Nurse! Nurse! Nurse! Nurse!" or "We're done! We're done! We're done! We're done!" many times a day or night), he will now only have to ignore doors slamming, kids arguing, iTunes blaring, phones ringing and piano practice in order to get a good sleep! Funny how we can easily ignore those "home" sounds.
I'm ravenous, so I'll sign off.
I'm ravenous, so I'll sign off.
Tuesday, September 13, 2011
Some progress
We are a couple of steps closer to getting Ramsy home soon. The hospital bed and lift arrived today and have been given their rightful place in our room. (Sounds so easy, but it actually took 3 friends working a couple of hours to get everything moved out and the carpet and underlay taken up, and the staples taken out of the remaining plywood, and everything vacuumed up before the delivery man came! Thank you!!!) I will be getting instruction in how to work the lift, and the home care will have to be finished getting arranged before we can get him here.
I have been very pleased, not to mention relieved, to see how much more alert Ramsy has been over the last two days. When I had him admitted a week ago, he was very lethargic and could not really respond to any of my questions- he would just look at me. The last couple of days he has been able to nod or shake his head as soon as I ask him most things, and has verbalized a "no" several times, and generally seems more energetic. I am not sure whether this is a result of being well hydrated, being off those darn chemo pills for a whole week, or a combination of a few things, but I am so very happy that he feels a little better!
I've also been wanting to say (but always forgetting as I've been posting) that it is really lovely to hear from friends from "the olden days". We very much appreciate hearing from you and knowing that you are with us in spirit. I wish we could sit down for coffee and a catch-up, or even that I could email everyone back. Too bad nobody has actually invented the StarTrek teleporter yet!
I have been very pleased, not to mention relieved, to see how much more alert Ramsy has been over the last two days. When I had him admitted a week ago, he was very lethargic and could not really respond to any of my questions- he would just look at me. The last couple of days he has been able to nod or shake his head as soon as I ask him most things, and has verbalized a "no" several times, and generally seems more energetic. I am not sure whether this is a result of being well hydrated, being off those darn chemo pills for a whole week, or a combination of a few things, but I am so very happy that he feels a little better!
I've also been wanting to say (but always forgetting as I've been posting) that it is really lovely to hear from friends from "the olden days". We very much appreciate hearing from you and knowing that you are with us in spirit. I wish we could sit down for coffee and a catch-up, or even that I could email everyone back. Too bad nobody has actually invented the StarTrek teleporter yet!
Saturday, September 10, 2011
Sad
After a couple of conversations with Ramsy and the oncologist, we have agreed that the chemo seems not to be helpful, and we are stopping treatment. Ramsy has been classified as palliative, as there is no different treatment to try at this point. The MRI from last Friday shows that the tumor has crossed from the left side into the right side- the area controlling motor function. This explains the quite sudden decline in strength in his "good" leg, so it is a relief to have that knowledge even though it is also horrible.
We are still working towards getting him home from the hospital as soon as possible. Equipment has been ordered, and we are just waiting for it to arrive and be set up so I can receive instruction in how to use it. Ramsy is reasonably comfortable in the hospital, and his nurses are so kind and sweet but I know he would much rather be at home. I miss him terribly much!
I talked with my kids today, explaining that their dad is not going to get better. They are really sad, but they also sensed this coming just from watching his gradual slide over the summer, so I think that helped prepare them a little bit for that conversation.
I have every certainty that God could still heal Ramsy, instantly or gradually, and to me that seems like just about the best idea ever; but I'm old enough to know that our most cherished dreams do not always become reality, so we are working on learning to let him go. And I thought labour was the hardest work I would ever do....
Please keep praying for us. We need you all.
We are still working towards getting him home from the hospital as soon as possible. Equipment has been ordered, and we are just waiting for it to arrive and be set up so I can receive instruction in how to use it. Ramsy is reasonably comfortable in the hospital, and his nurses are so kind and sweet but I know he would much rather be at home. I miss him terribly much!
I talked with my kids today, explaining that their dad is not going to get better. They are really sad, but they also sensed this coming just from watching his gradual slide over the summer, so I think that helped prepare them a little bit for that conversation.
I have every certainty that God could still heal Ramsy, instantly or gradually, and to me that seems like just about the best idea ever; but I'm old enough to know that our most cherished dreams do not always become reality, so we are working on learning to let him go. And I thought labour was the hardest work I would ever do....
Please keep praying for us. We need you all.
Wednesday, September 7, 2011
Hospital visits
It looks like Ramsy will be in the hospital for about a week, as it will take a few days for the needed equipment and assistance to be put into place. I spent some time there today, mostly with the staff who are organizing all of this, and will pop back in for a bit this evening.
A few notes for people who visit him in the hospital: he is usually not wearing his glasses, so it's probably a good idea to say your name as you greet him since he may not be able to see your face clearly! He can't speak, but he may chuckle or raise his eyebrows or grin in response to your greeting and comments. He can hear perfectly well and understands much of what is said to him, but sometimes (especially if he is tired or has just woken up) it takes him a moment to process what you said. Sometimes he can respond to a yes-or-no question with a nod or headshake, but often he uses facial expressions to respond. He appreciates short visits, maybe 10 minutes, as he is still weak and tired. If I am not there, please write in the spiral-bound notebook so I can see who visited and chat with him about that.
I feel that I always end my posts with various thanks to people, and that seems to my readerly mind to be uncreative, but that's how it goes. So I say again, thanks for the love you send our way and the prayers you say on our behalf. When I put the prayer shawl on Ramsy's chest when he is settling in to sleep, I tell him, "These are the prayers of the people." And he smiles.
A few notes for people who visit him in the hospital: he is usually not wearing his glasses, so it's probably a good idea to say your name as you greet him since he may not be able to see your face clearly! He can't speak, but he may chuckle or raise his eyebrows or grin in response to your greeting and comments. He can hear perfectly well and understands much of what is said to him, but sometimes (especially if he is tired or has just woken up) it takes him a moment to process what you said. Sometimes he can respond to a yes-or-no question with a nod or headshake, but often he uses facial expressions to respond. He appreciates short visits, maybe 10 minutes, as he is still weak and tired. If I am not there, please write in the spiral-bound notebook so I can see who visited and chat with him about that.
I feel that I always end my posts with various thanks to people, and that seems to my readerly mind to be uncreative, but that's how it goes. So I say again, thanks for the love you send our way and the prayers you say on our behalf. When I put the prayer shawl on Ramsy's chest when he is settling in to sleep, I tell him, "These are the prayers of the people." And he smiles.
New adventure
A quick note this morning. Over the last couple of weeks, Ramsy has gradually been losing strength and I have been having to do more and more lifting and "heaving" of the poor man. (Those of you who have seen me know what huge pipes I have- ha!) A few friends who saw this advised me that this was not a good situation, and that I needed to get him into the hospital for a rest for both of us until the proper equipment and nursing help can be set up at home. So yesterday morning we did get an ambulance to take him to Portage hospital (we wouldn't have been able to get him into the van) and he has been admitted for a few days. This is both stressful and relieving! I was really happy to see that he seemed very much more comfortable in the hospital bed with his head elevated to sleep- no more snoring! I am taking the kids to see him this morning. Watch for further updates over the next while. Thanks for the ongoing prayers; they are a huge help.
Saturday, August 13, 2011
We're back
Once again, the weeks have slipped by and it is way past time for an update. I just read over my last post and realize how many things have changed in the last three weeks or so. It feels like we are at a new stage again in this journey, and it always takes several weeks and a ton of energy (physical and emotional) to adjust to a new one.
Ramsy finished the first of these chemo rounds this week. Next one starts this Wednesday the 17th. Thanks to all of you who pray for him to be able to manage all those pills. It was not fun for him, but he did it with a little less difficulty than I expected. Over these three weeks, he has become very weak and tired; he has lost all use of his right leg, except to take a short step with it while supported firmly on that side; because of the tiredness and lack of strength in that leg, he has not been able to get out of the wheelchair as much anymore, so he has lost strength in his good leg. This all makes him very wobbly, and he really needs firm support pretty well all the time he is up. In addition, he is sometimes dizzy.
He is not having headaches as often as he was a month ago, and he is mostly not "foggy" the way he was in June. His language has not come back at all, so he is still limited to "yes" and "no". "Yes" is harder and often comes out as, "No. Ah!" He still understands most of what is said to him, probably at least 80% judging by his quick responses to my jokes and comments, but sometimes when I ask him a question he just looks at me and I know he didn't get it, so I ask again. That usually works. Through questioning, I have found out from him that he hears the words that are spoken (as opposed to gibberish) but the meaning is missing for that moment.
Another change is increased confusion over daily tasks. He needs a lot more support for many things than he did a few weeks ago. It is a challenge for him to choose between options offered to him- better to just offer one and wait for him to indicate "yes" or "no". Sometimes he will start a task, such as brushing his teeth, and get "lost" in the middle. I need to come alongside him and remind him what to do next. This means that for both of us to get up and ready for the day takes up most of the morning; if you come to the door at 9 or 10 or 11 am, you may find me still in my pjs- but that's ok. I have found myself able to relax about that since I remembered the mindset I had when our kids were newborns: the caretaking is not interrupting my morning "to do" list, it is my morning "to do" list.
Someone asked me recently, "So if he can't talk, and he has some trouble understanding, is he still 'there'? Is he still himself?" The answer is a definite yes. He is very much himself: even-keeled, cheerful, loving, always ready to laugh at a good (or lousy) joke or at himself, patient, sometimes stubborn. He rolls his eyes at things he is annoyed at, he teases me by acting silly or bratty. When people meet up with him and say, "Hi, Ramsy," he is sometimes silent because he can't respond with "Hi", but he knows exactly what's going on around him most of the time. Even though this stage is physically and emotionally demanding for me, I feel so lucky to have him with me every day. It is so, so painful to think of him not getting better, and to see him struggle with tasks, and to not be able to have him tell me what he is thinking. It is often difficult to write the hard things in this blog, because somehow writing them makes them seem more real, but it's important to me to let our friends know what's happening, and also to keep a record for our family. I cry most days. But then, we also laugh every day, and enjoy eating chips together or watching a movie or seeing the hawks above the fields. There is something good every single day, and I want to remember those things, too.
Ramsy finished the first of these chemo rounds this week. Next one starts this Wednesday the 17th. Thanks to all of you who pray for him to be able to manage all those pills. It was not fun for him, but he did it with a little less difficulty than I expected. Over these three weeks, he has become very weak and tired; he has lost all use of his right leg, except to take a short step with it while supported firmly on that side; because of the tiredness and lack of strength in that leg, he has not been able to get out of the wheelchair as much anymore, so he has lost strength in his good leg. This all makes him very wobbly, and he really needs firm support pretty well all the time he is up. In addition, he is sometimes dizzy.
He is not having headaches as often as he was a month ago, and he is mostly not "foggy" the way he was in June. His language has not come back at all, so he is still limited to "yes" and "no". "Yes" is harder and often comes out as, "No. Ah!" He still understands most of what is said to him, probably at least 80% judging by his quick responses to my jokes and comments, but sometimes when I ask him a question he just looks at me and I know he didn't get it, so I ask again. That usually works. Through questioning, I have found out from him that he hears the words that are spoken (as opposed to gibberish) but the meaning is missing for that moment.
Another change is increased confusion over daily tasks. He needs a lot more support for many things than he did a few weeks ago. It is a challenge for him to choose between options offered to him- better to just offer one and wait for him to indicate "yes" or "no". Sometimes he will start a task, such as brushing his teeth, and get "lost" in the middle. I need to come alongside him and remind him what to do next. This means that for both of us to get up and ready for the day takes up most of the morning; if you come to the door at 9 or 10 or 11 am, you may find me still in my pjs- but that's ok. I have found myself able to relax about that since I remembered the mindset I had when our kids were newborns: the caretaking is not interrupting my morning "to do" list, it is my morning "to do" list.
Someone asked me recently, "So if he can't talk, and he has some trouble understanding, is he still 'there'? Is he still himself?" The answer is a definite yes. He is very much himself: even-keeled, cheerful, loving, always ready to laugh at a good (or lousy) joke or at himself, patient, sometimes stubborn. He rolls his eyes at things he is annoyed at, he teases me by acting silly or bratty. When people meet up with him and say, "Hi, Ramsy," he is sometimes silent because he can't respond with "Hi", but he knows exactly what's going on around him most of the time. Even though this stage is physically and emotionally demanding for me, I feel so lucky to have him with me every day. It is so, so painful to think of him not getting better, and to see him struggle with tasks, and to not be able to have him tell me what he is thinking. It is often difficult to write the hard things in this blog, because somehow writing them makes them seem more real, but it's important to me to let our friends know what's happening, and also to keep a record for our family. I cry most days. But then, we also laugh every day, and enjoy eating chips together or watching a movie or seeing the hawks above the fields. There is something good every single day, and I want to remember those things, too.
Friday, July 22, 2011
And the winnah is...
Last weekend we talked over our treatment options and we decided to go with the chemo drug that Ramsy has had before, just on a low-dose, high-frequency schedule. From talking with the doctor and a couple of other patients, we know that this schedule can get around the resistance enzyme that some people have to the drug (which is possibly the reason that the drug was not very effective for him last time). The chemo drug, temozolomide, is given together with Celebrex- normally prescribed for arthritis, it has been found to inhibit cell growth as well, and we hope it does in this case!
All the prescriptions arrived in time, so we were able to begin treatment on Wednesday. The schedule will run 21 days on, 7 days off treatment with a blood test once a week (mostly in Portage- closer to us than Winnipeg) and a visit to the oncologist once a month. I believe he will be having an MRI every 12 weeks again as well.
Including all the medications Ramsy is taking (anti-nausea, chemo, blood pressure, 2 types of anti-seizure, steroids, stomach protector, and antibiotic) he has to swallow up to 26 pills a day, divided into 6 batches. This is proving to be a real challenge for him; so far it doesn't make him gag, but it does make him shudder every time. Please pray for him that he will be able to manage this!
I have been very happy to see a couple of small improvements over the last few days: he has been able to lift his right leg and swing it forward at the knee to take a step instead of lifting at the hip and dragging the foot forward; he has also managed a few more words some days, and even said a 3-word sentence once! And he seems not to be quite so foggy except when he is quite tired or if he has a headache; in fact, now that I know he has been having headaches, I have watched for the signs and given him some good painkillers. When the pain is gone, the fogginess is often also gone, and I am wondering if he may have been having headaches more than he even realized. You know how you just get used to a bit of pain and don't even notice it anymore...
Anyway, these little things have helped brighten some pretty dark days. I am so happy to have him "back" a little more. He is my favourite person, and it is really hard to go day to day to day without him talking. We keep hoping for a miracle but try to live in the knowledge that there may not be one- or at least not the one we wish for. Thanks again for your many prayers, encouragements, and the help you give us- whether it's money or gift cards, housekeeping, food, repairs, rides, videos lent or whatever. It all helps.
All the prescriptions arrived in time, so we were able to begin treatment on Wednesday. The schedule will run 21 days on, 7 days off treatment with a blood test once a week (mostly in Portage- closer to us than Winnipeg) and a visit to the oncologist once a month. I believe he will be having an MRI every 12 weeks again as well.
Including all the medications Ramsy is taking (anti-nausea, chemo, blood pressure, 2 types of anti-seizure, steroids, stomach protector, and antibiotic) he has to swallow up to 26 pills a day, divided into 6 batches. This is proving to be a real challenge for him; so far it doesn't make him gag, but it does make him shudder every time. Please pray for him that he will be able to manage this!
I have been very happy to see a couple of small improvements over the last few days: he has been able to lift his right leg and swing it forward at the knee to take a step instead of lifting at the hip and dragging the foot forward; he has also managed a few more words some days, and even said a 3-word sentence once! And he seems not to be quite so foggy except when he is quite tired or if he has a headache; in fact, now that I know he has been having headaches, I have watched for the signs and given him some good painkillers. When the pain is gone, the fogginess is often also gone, and I am wondering if he may have been having headaches more than he even realized. You know how you just get used to a bit of pain and don't even notice it anymore...
Anyway, these little things have helped brighten some pretty dark days. I am so happy to have him "back" a little more. He is my favourite person, and it is really hard to go day to day to day without him talking. We keep hoping for a miracle but try to live in the knowledge that there may not be one- or at least not the one we wish for. Thanks again for your many prayers, encouragements, and the help you give us- whether it's money or gift cards, housekeeping, food, repairs, rides, videos lent or whatever. It all helps.
Saturday, July 16, 2011
MRI Results
We had a very long day yesterday! I was up at 4:30 and Ramsy followed at 5 so we could make it to Health Sciences for 7:00. Blech. I am not really a morning person, especially if that morning is actually still in the nighttime. But we did it, had the MRI, had the blood test, went to crash at a friend's house in the city for a couple of hours, and then back to Cancer Care to see the Dr. at 1:00. Then the radiologist had not read the scan yet, so we had to wait a little longer before getting the results.
Anyway, we were not very surprised to hear that the study drug did not help Ramsy, and the tumor is somewhat larger. The doctor said that it is "not significantly larger", but there is some growth, especially in the spots that were smaller to begin with. There is also still a fair amount of swelling, the same as a couple of months ago, so I figure that bit of growth combined with the swelling accounts for Ramsy's increased symptoms. Ramsy was able to say a few extra words beyond yes or no in the office, but I had to do the talking for both of us. Through the Dr.'s questions, and clarifying Ramsy's answers, Ramsy also let us know that there are some times when he has trouble understanding what is said to him, although it's not a large chunk of the time. Still, this is worrisome to me, and hard to accept in addition to his loss of speech.
We have been offered a couple of medication options that we will be talking about over the weekend and making a decision on. One is pretty standard and the other is newer. I will be working on talking with Ramsy about them today and tomorrow. That's a bit of a challenge as I have to imagine what he might be thinking on any angle of the discussion and then turn each idea in to a yes-or-no question. (Interesting how I used to want to work as a translator....)
Even though we were pretty much expecting to receive this report, it is still saddening and frustrating. Then, just to round out the fun for the day, Ramsy had a seizure in the van on the way home, and then another one in the evening. Sheesh. Of course, almost all of his seizures occur on weekends when we can't get hold of his doctor or nurse. Hopefully there won't be any more this weekend.
Thanks for the love you send us and the prayers you say for us. We need them a lot this weekend.
Anyway, we were not very surprised to hear that the study drug did not help Ramsy, and the tumor is somewhat larger. The doctor said that it is "not significantly larger", but there is some growth, especially in the spots that were smaller to begin with. There is also still a fair amount of swelling, the same as a couple of months ago, so I figure that bit of growth combined with the swelling accounts for Ramsy's increased symptoms. Ramsy was able to say a few extra words beyond yes or no in the office, but I had to do the talking for both of us. Through the Dr.'s questions, and clarifying Ramsy's answers, Ramsy also let us know that there are some times when he has trouble understanding what is said to him, although it's not a large chunk of the time. Still, this is worrisome to me, and hard to accept in addition to his loss of speech.
We have been offered a couple of medication options that we will be talking about over the weekend and making a decision on. One is pretty standard and the other is newer. I will be working on talking with Ramsy about them today and tomorrow. That's a bit of a challenge as I have to imagine what he might be thinking on any angle of the discussion and then turn each idea in to a yes-or-no question. (Interesting how I used to want to work as a translator....)
Even though we were pretty much expecting to receive this report, it is still saddening and frustrating. Then, just to round out the fun for the day, Ramsy had a seizure in the van on the way home, and then another one in the evening. Sheesh. Of course, almost all of his seizures occur on weekends when we can't get hold of his doctor or nurse. Hopefully there won't be any more this weekend.
Thanks for the love you send us and the prayers you say for us. We need them a lot this weekend.
Tuesday, July 12, 2011
Uphill through the fog, both ways, in bare feet, in 4-foot snowdrifts...
We are 3 days away from Ramsy's MRI, and it is coming none too soon, let me tell you! We are very anxious to see whether his increased symptoms are coming from rebound swelling (as mentioned in an earlier post, our doctor says that sometimes when a tumor shrinks, there is swelling as a reaction) or from tumor growth. Then we will decide together with our medical team what the appropriate treatment is- continue with this study drug (also known as "the mystery drug" in our house) or return to the temozolomide (chemo drug from earlier) on a schedule of 3 weeks on, 1 week off.
It is very difficult for Ramsy to talk. He can say "yes" and "no" most of the time, and sometimes other individual words (especially "chips") or even a whole sentence ("I--would--like--some--more--soup."). His right leg is quite weak, and he is noticing increasing fogginess, similar to what he experienced a few weeks ago before we increased his steroids. This is discouraging for him, of course, and for the rest of us. I try not to panic but to keep calm and get the job done, whatever job that is at the moment. Funnily enough, the day before we found out he had a brain tumor, I picked up a cool tin in Chapters that I had always liked, and it was on sale, so I bought it with a gift card I had. It's red and has a picture of a crown on it and says, in large friendly letters, "Keep calm and carry on." It sits on my dresser and is amazingly appropriate over and over again.
Since we are not currently busy with speech homework, and the kids are around for summer holidays, we are doing more playing of board games, watching shows together, listening to audiobooks or books I read aloud, and that kind of thing. I like to take Ramsy out in his wheelchair for a walk around town if it's not too hot for me, delicate flower that I am! I can't say that my muscles are exactly toned, but I am certainly stronger than I was 6 weeks ago. (Thank you, Michael Jackson dance-along Wii game!)
That's all I have to say for now.... Stay tuned for further updates after the MRI.
It is very difficult for Ramsy to talk. He can say "yes" and "no" most of the time, and sometimes other individual words (especially "chips") or even a whole sentence ("I--would--like--some--more--soup."). His right leg is quite weak, and he is noticing increasing fogginess, similar to what he experienced a few weeks ago before we increased his steroids. This is discouraging for him, of course, and for the rest of us. I try not to panic but to keep calm and get the job done, whatever job that is at the moment. Funnily enough, the day before we found out he had a brain tumor, I picked up a cool tin in Chapters that I had always liked, and it was on sale, so I bought it with a gift card I had. It's red and has a picture of a crown on it and says, in large friendly letters, "Keep calm and carry on." It sits on my dresser and is amazingly appropriate over and over again.
Since we are not currently busy with speech homework, and the kids are around for summer holidays, we are doing more playing of board games, watching shows together, listening to audiobooks or books I read aloud, and that kind of thing. I like to take Ramsy out in his wheelchair for a walk around town if it's not too hot for me, delicate flower that I am! I can't say that my muscles are exactly toned, but I am certainly stronger than I was 6 weeks ago. (Thank you, Michael Jackson dance-along Wii game!)
That's all I have to say for now.... Stay tuned for further updates after the MRI.
Our playlist
Here's what we're listening to these days- some old favourites, some new discoveries; some to comfort and encourage, and some just for fun or to dance to!
To help us in the hard moments:
Dancing in the Minefields- Andrew Peterson (If you don't know this one, search the lyrics sometime, or buy it on iTunes. One of my very favourites.)
Someday- Nichole Nordeman
Little Wonders- Rob Thomas
Songs from Bebo Norman's album Ocean- God of My Everything, Everything I Hoped You'd Be, We
Fall Apart
Blackbird- Sarah McLachlan
Just for fun:
Kung-Fu Fighting- Cee-Lo and Jack Black
Ob-la-di, Ob-la-da- remake by House of Heroes (also "It Won't Be Long"- fun Beatles covers!)
Stuck in the Middle With You- another cover- by Michael Buble
The Afterlife- Paul Simon (makes me chuckle as I'm dealing with bureaucracy and forms!)
Only the Lonely and Dream Baby- Roy Orbison (for my "olden days" kick)
Catchafire- tobyMac (to horrify my kids with my fake hip-hop dancing)
Don't Bring Me Down- ELO (Even the 15-year-old likes this one. :))
To help us in the hard moments:
Dancing in the Minefields- Andrew Peterson (If you don't know this one, search the lyrics sometime, or buy it on iTunes. One of my very favourites.)
Someday- Nichole Nordeman
Little Wonders- Rob Thomas
Songs from Bebo Norman's album Ocean- God of My Everything, Everything I Hoped You'd Be, We
Fall Apart
Blackbird- Sarah McLachlan
Just for fun:
Kung-Fu Fighting- Cee-Lo and Jack Black
Ob-la-di, Ob-la-da- remake by House of Heroes (also "It Won't Be Long"- fun Beatles covers!)
Stuck in the Middle With You- another cover- by Michael Buble
The Afterlife- Paul Simon (makes me chuckle as I'm dealing with bureaucracy and forms!)
Only the Lonely and Dream Baby- Roy Orbison (for my "olden days" kick)
Catchafire- tobyMac (to horrify my kids with my fake hip-hop dancing)
Don't Bring Me Down- ELO (Even the 15-year-old likes this one. :))
Saturday, June 18, 2011
Navigating through the fog
I've just read back through the last two posts and I see it's time to bring you up to speed on the new treatment and how we are doing. Ramsy has been on this study drug for 4 weeks now, and I guess the most accurate thing to say is that we are reserving judgment. He takes the pills every morning on an empty stomach, and so far the side effects have been manageable- only 2 "incidents", as we like to refer to them. We are very thankful for this. There is one other person in Winnipeg taking this drug, and from what our nurse tells us, she has had much rougher going than Ramsy!
As for whether the drug is helping Ramsy at all, we are really not sure. He has felt increased weakness in his right foot/leg, for one thing; his speech continues to come and go according to no pattern that we can see (Chaos Theory, anyone?), but in the last two weeks we have noticed a new "fogginess" about his thoughts. Instead of him being stuck on a word that is right there in his mind and just can't come out, the process of expressing a thought seems to be more like picking up a blob of mercury: the more you try to grab hold of it, the more it scatters into little pieces. (Y'all know I'm old, right? Like, we used glass thermometers with mercury in them when I was little?) It has also been taking him a long time to fully lose the grogginess after he wakes up in the morning or after a nap. Obviously, this has been concerning for us. We mentioned this to his nurse on Friday, thinking that it might be a sign that the tumor is growing. That is a possibility, but the nurse also said that sometimes when a tumor shrinks, there can be rebound swelling, and that could also account for the fog. The first thing we are trying is increasing his steroids (which are used to counteract swelling) to see whether the symptoms respond to that. Boy, do we hope so! To me it seems that the fog is a little less thick today than it was yesterday, but again all we can do is wait and see.
We have been asked by quite a few people, "How do you do it? You always seem so positive." In one way, the answer is: We don't know. We don't feel like we are behaving or thinking in any special way, or "being strong", or anything like that; we are just being ourselves, and also don't know any other way to do it besides just doing the next thing that needs to be done, and finding the good things about being together so much, and enjoying the humor when we can.
In another way, I guess the answer is: God helps us. He gives us peace that does not come from any thing we do, or any attitude that we strive for, or any positive thinking that we maintain. For the first time I am experiencing the fact that this is purely a gift given to us to help us in our great need. He also makes sure that friends, family, and even complete strangers help us. We have been given money, gift cards, food, letters of encouragement, smiles, parking spots, a gorgeously built ramp in the front of our house, and all of these things are reminders for us that He sees us, He knows how completely helpless we are, and He loves us. That's just who He is. How cool to be learning that truth through life experience so that we know it for ourselves, and it isn't just a Sunday School lesson anymore.
As for whether the drug is helping Ramsy at all, we are really not sure. He has felt increased weakness in his right foot/leg, for one thing; his speech continues to come and go according to no pattern that we can see (Chaos Theory, anyone?), but in the last two weeks we have noticed a new "fogginess" about his thoughts. Instead of him being stuck on a word that is right there in his mind and just can't come out, the process of expressing a thought seems to be more like picking up a blob of mercury: the more you try to grab hold of it, the more it scatters into little pieces. (Y'all know I'm old, right? Like, we used glass thermometers with mercury in them when I was little?) It has also been taking him a long time to fully lose the grogginess after he wakes up in the morning or after a nap. Obviously, this has been concerning for us. We mentioned this to his nurse on Friday, thinking that it might be a sign that the tumor is growing. That is a possibility, but the nurse also said that sometimes when a tumor shrinks, there can be rebound swelling, and that could also account for the fog. The first thing we are trying is increasing his steroids (which are used to counteract swelling) to see whether the symptoms respond to that. Boy, do we hope so! To me it seems that the fog is a little less thick today than it was yesterday, but again all we can do is wait and see.
We have been asked by quite a few people, "How do you do it? You always seem so positive." In one way, the answer is: We don't know. We don't feel like we are behaving or thinking in any special way, or "being strong", or anything like that; we are just being ourselves, and also don't know any other way to do it besides just doing the next thing that needs to be done, and finding the good things about being together so much, and enjoying the humor when we can.
In another way, I guess the answer is: God helps us. He gives us peace that does not come from any thing we do, or any attitude that we strive for, or any positive thinking that we maintain. For the first time I am experiencing the fact that this is purely a gift given to us to help us in our great need. He also makes sure that friends, family, and even complete strangers help us. We have been given money, gift cards, food, letters of encouragement, smiles, parking spots, a gorgeously built ramp in the front of our house, and all of these things are reminders for us that He sees us, He knows how completely helpless we are, and He loves us. That's just who He is. How cool to be learning that truth through life experience so that we know it for ourselves, and it isn't just a Sunday School lesson anymore.
Wednesday, June 8, 2011
Speech therapy
Today I thought I'd describe what Ramsy does at his speech therapy sessions. We go about once a week to see a very sweet speech-language pathologist (also referred to as an SPL) who, although she is very kind, does not let Ramsy off the hook! Her goal is to at least maintain his current speaking abilities, and hopefully to improve them over time. Although the tumor has caused disruptions in Ramsy's expressive language capacities, and the neural pathways that retrieve words don't work anymore, it is possible- through diligent long-term practice- to form new pathways so that his brain will be able to come up with those words more automatically. It's like physiotherapy for the brain instead of muscles.
Some of the things we work on to help him exercise his grey matter include:
Some of the things we work on to help him exercise his grey matter include:
- naming the opposite of a given word (easy!)
- naming a synonym for a given word (harder)
- identifying a common characteristic of items in a list (What do puck, net, and mask have in common? They are all hockey equipment.)
- adding an appropriate item to a list of related items
- listing 5 items in a certain category (Things in a Kitchen, or Restaurants, or Flavours of Chips. This is the most difficult activity for Ramsy because his mind ping-pongs all over the category and has trouble settling on one word.)
We usually have a good laugh at least once per practice session because Ramsy likes to be very creative in his responses. The SPL had no idea what Ramsy was saying when he gave "Jai Alai" as an answer in the Sports category! Or another day he gave me "Hockey, hockey, hockey, hockey and ... hockey!" as his 5 sports. (You may have noticed the hockey theme in this post. We're watching Game 4. Go Canucks!)
Even though we have fun, it's not at all easy for Ramsy to work on this every day. I'm so proud of him. Love looking after him!
Tuesday, May 31, 2011
I want a new drug
After meeting with the surgeon a couple of weeks ago, we decided not to pursue the surgery option. Our surgeon considers himself quite an aggressive surgeon (puts himself at 8 out of 10 in terms of being willing to go in where others might not) but still has significant concerns about trying to remove any of Ramsy's tumor. He feels there is a high risk of leaving Ramsy not only unable to communicate, but also unable to understand language and potentially paralyzed. Essentially, the worst case scenario would be that we end up with Ramsy as a nice cooked carrot in a hospital bed.
So.... the next day we met with the nurse who is in charge of the drug studies at Cancer Care and she presented us with the information about a very new drug that stops the enzyme which allows a glioblastoma multiforme tumor to grow out of control. The main side effects that they have seen so far in the study are intestinal "distress", shall we say, and sometimes fatigue or headache. Participating in this study will not prevent Ramsy from using other treatments down the road, and he would be able to withdraw from the study at any time for any reason if he chose.
It seems like a low-risk option, so we have signed up for this and Ramsy started taking the drug last Saturday. It is in pill form, which he takes every morning before he eats. Once a week he must go to Winnipeg to see the study nurse and have blood tests. He will have an MRI every 8 weeks, and as long as the tumor stays stable (or even shrinks!) he will remain in the study. If there is any sign of tumor growth, he will go off the study drug and on to a more standard treatment. So far, we have seen almost no side effects except for one isolated incident. 'Nuff said.
As for the flood situation here, so far, so good in our town. The government did not have to release as much water as they had thought and the flooding was not nearly as extensive as projected. There is still water in the fields, and the water table is very high (not to mention the river!) but it looks OK for now.
So.... the next day we met with the nurse who is in charge of the drug studies at Cancer Care and she presented us with the information about a very new drug that stops the enzyme which allows a glioblastoma multiforme tumor to grow out of control. The main side effects that they have seen so far in the study are intestinal "distress", shall we say, and sometimes fatigue or headache. Participating in this study will not prevent Ramsy from using other treatments down the road, and he would be able to withdraw from the study at any time for any reason if he chose.
It seems like a low-risk option, so we have signed up for this and Ramsy started taking the drug last Saturday. It is in pill form, which he takes every morning before he eats. Once a week he must go to Winnipeg to see the study nurse and have blood tests. He will have an MRI every 8 weeks, and as long as the tumor stays stable (or even shrinks!) he will remain in the study. If there is any sign of tumor growth, he will go off the study drug and on to a more standard treatment. So far, we have seen almost no side effects except for one isolated incident. 'Nuff said.
As for the flood situation here, so far, so good in our town. The government did not have to release as much water as they had thought and the flooding was not nearly as extensive as projected. There is still water in the fields, and the water table is very high (not to mention the river!) but it looks OK for now.
Saturday, May 14, 2011
New steps
We met with Ramsy's oncologist on Friday to get the results of last week's MRI. The doctor said that the tumor is still active, although it is not significantly bigger than it was in November, only slightly bigger. This indicates that the current treatment plan is not effective, so we will be switching treatments and, therefore, getting a new oncologist.
The new doctor was there to assess Ramsy's status- how much his speech and movement are affected, and a couple of other symptoms. He discussed several treatment plans with us, including trying a clinical trial drug, staying on the same drug but on a different dosage and schedule, and possible surgery. When Ramsy initially met with the neurosurgeon here in November, the surgeon was concerned about potentially causing significant damage to Ramsy's communication or mobility. At that time, the tumor was only having a rather small effect on both those areas; however, now that it is significantly impacting those areas, surgery to remove some of the tumor may be an option.
We are waiting to receive more information on these three treatment options- on Monday or Tuesday we should hear back from the new oncologist- before we make a decision. We would appreciate prayers for wisdom for us and each of the doctors involved in the decision process! Ramsy is happy for this opportunity, as he felt frustrated with the limited results of the 5-on, 23-off plan he has followed for the last three months.
One cool thing, however: we realized last week that he can actually move his right arm sometimes. He has managed several times to bend it to a 90-degree angle, which he has not been able to do since January or February. His energy has also been good for the last couple of weeks, so we are encouraged that somehow, there has been a little improvement.
Many people have asked about the flood situation here. As far as anyone can tell, the water is not supposed to come over the railroad tracks which are about half a block south of us. There has been much sandbagging here in Oakville, including on the one street that is south of the tracks, and lots of people are nervous about their homes. We will wait and see what happens.
The new doctor was there to assess Ramsy's status- how much his speech and movement are affected, and a couple of other symptoms. He discussed several treatment plans with us, including trying a clinical trial drug, staying on the same drug but on a different dosage and schedule, and possible surgery. When Ramsy initially met with the neurosurgeon here in November, the surgeon was concerned about potentially causing significant damage to Ramsy's communication or mobility. At that time, the tumor was only having a rather small effect on both those areas; however, now that it is significantly impacting those areas, surgery to remove some of the tumor may be an option.
We are waiting to receive more information on these three treatment options- on Monday or Tuesday we should hear back from the new oncologist- before we make a decision. We would appreciate prayers for wisdom for us and each of the doctors involved in the decision process! Ramsy is happy for this opportunity, as he felt frustrated with the limited results of the 5-on, 23-off plan he has followed for the last three months.
One cool thing, however: we realized last week that he can actually move his right arm sometimes. He has managed several times to bend it to a 90-degree angle, which he has not been able to do since January or February. His energy has also been good for the last couple of weeks, so we are encouraged that somehow, there has been a little improvement.
Many people have asked about the flood situation here. As far as anyone can tell, the water is not supposed to come over the railroad tracks which are about half a block south of us. There has been much sandbagging here in Oakville, including on the one street that is south of the tracks, and lots of people are nervous about their homes. We will wait and see what happens.
Sunday, May 8, 2011
Can't think of a good title!
Hi everyone,
We are back from our family adventure in Morden. We had a lovely time- all the kids swam and swam until they had rashes from the chlorine, there was an abundance of food (anyone who has never drunk cream gravy straight from the pitcher doesn't know what they're missing!) and the adults got lots of time to talk and talk and talk in between the eating. Since we were all in the same hotel, Ramsy could head off to our room for a rest whenever he needed to and then join the crowd later on. In spite of the snowstorm, everyone seemed to have a blast!
Interestingly, Ramsy's speech had been very labored for about a week and a half, but a couple of days after we got home, it smoothed out. On Friday we met with a speech-language pathologist for an assessment. She listened to him talk for quite a long time, asked him questions about himself and his work, and asked him to describe what was going on in a picture she showed him. (We got quite a kick out of this picture, evidently from the 50s or 60s, showing a woman in a dress and apron wiping a dish at the kitchen sink as the water poured over the edge onto the floor and two children behind her swiped cookies from the pantry!) After this was finished, she said that she recognized two issues in his communication: aphasia and apraxia. They commonly occur together, and one is to do with an interruption in the brain's signals to the muscles in the mouth/throat that form the sounds, and the other is to do with how his brain selects words. She wants him to come two or three times a week for a couple of weeks, and then less often after that. We are hopeful that this will be helpful for him; it's so frustrating for him not to be able to say what he is thinking!
We are back from our family adventure in Morden. We had a lovely time- all the kids swam and swam until they had rashes from the chlorine, there was an abundance of food (anyone who has never drunk cream gravy straight from the pitcher doesn't know what they're missing!) and the adults got lots of time to talk and talk and talk in between the eating. Since we were all in the same hotel, Ramsy could head off to our room for a rest whenever he needed to and then join the crowd later on. In spite of the snowstorm, everyone seemed to have a blast!
Interestingly, Ramsy's speech had been very labored for about a week and a half, but a couple of days after we got home, it smoothed out. On Friday we met with a speech-language pathologist for an assessment. She listened to him talk for quite a long time, asked him questions about himself and his work, and asked him to describe what was going on in a picture she showed him. (We got quite a kick out of this picture, evidently from the 50s or 60s, showing a woman in a dress and apron wiping a dish at the kitchen sink as the water poured over the edge onto the floor and two children behind her swiped cookies from the pantry!) After this was finished, she said that she recognized two issues in his communication: aphasia and apraxia. They commonly occur together, and one is to do with an interruption in the brain's signals to the muscles in the mouth/throat that form the sounds, and the other is to do with how his brain selects words. She wants him to come two or three times a week for a couple of weeks, and then less often after that. We are hopeful that this will be helpful for him; it's so frustrating for him not to be able to say what he is thinking!
Tuesday, April 26, 2011
Round three done
So we've made it through another chemo round. Sunday was the last day, and Ramsy is now recovering. He spent virtually all of yesterday in bed and was actually sleeping a large part of the day, which is a bit unusual for him. Today he has more energy. We were interested to note that this time around he did not have as many food aversions.
We are looking forward to a visit with some out-of-province family next weekend. We will be converging in Ramsy's hometown- look out, Morden! Our kids are thrilled to be seeing some cousins and maybe staying up late at night.
We are looking forward to a visit with some out-of-province family next weekend. We will be converging in Ramsy's hometown- look out, Morden! Our kids are thrilled to be seeing some cousins and maybe staying up late at night.
Tuesday, April 19, 2011
Hooray for little victories!
Yay, yay, yay! The platelet count is up to 125, so chemo goes ahead as scheduled tomorrow!
Friday, April 15, 2011
Hello again!
Hi there, readers! We are back in cyberspace after a couple of weeks. I was busy with numerous forms that had to be filled out and other life sundries and just never seemed to get to the blog. Sorry for the long silence! (On the subject of forms, I had to laugh this week when I got three new forms sent to me in response to one I sent away last week, thinking it was the last one I'd have to do for some time. Too bad I don't get paid by the page!)
Ramsy saw his doctor today in preparation for the next round of chemo, scheduled to start Wednesday. For the first time, his platelet count is iffy- 97 instead of the usual minimum level of 100 (I don't really know 100 what, but that's the number). He will have the level checked on Tuesday to see if it has edged up to the magic number.
We have not seen the improvement in his speech or strength in his leg that we hoped to see this week. It is quite difficult for Ramsy to talk most days, with the odd day of getting whole sentences out in a row. We recently met a woman who also has a brain tumor in the same location, and she too says that sometimes she can see the words in her mind's eye, but just can't enunciate them. Ramsy is being incredibly patient with this difficulty, but sometimes it is just really frustrating. I find that quite often I can guess what he is wanting to say, but sometimes we laugh at how far off I am in some guesses!
And, in the category of "Strange but True", we discovered a couple of weeks ago that our guinea pig had... a tumor! It was growing on his underbelly and was already the size of an apricot! We took him to the vet, who operated to remove the tumor, but guinea pigs are notoriously delicate when it comes to anesthetic and our poor "Piggy" died. He was a noble and friendly beast (as the vet put it, "He doesn't bite!) and we miss him.
Thanks for your continued prayers and kind acts; they keep us going.
Ramsy saw his doctor today in preparation for the next round of chemo, scheduled to start Wednesday. For the first time, his platelet count is iffy- 97 instead of the usual minimum level of 100 (I don't really know 100 what, but that's the number). He will have the level checked on Tuesday to see if it has edged up to the magic number.
We have not seen the improvement in his speech or strength in his leg that we hoped to see this week. It is quite difficult for Ramsy to talk most days, with the odd day of getting whole sentences out in a row. We recently met a woman who also has a brain tumor in the same location, and she too says that sometimes she can see the words in her mind's eye, but just can't enunciate them. Ramsy is being incredibly patient with this difficulty, but sometimes it is just really frustrating. I find that quite often I can guess what he is wanting to say, but sometimes we laugh at how far off I am in some guesses!
And, in the category of "Strange but True", we discovered a couple of weeks ago that our guinea pig had... a tumor! It was growing on his underbelly and was already the size of an apricot! We took him to the vet, who operated to remove the tumor, but guinea pigs are notoriously delicate when it comes to anesthetic and our poor "Piggy" died. He was a noble and friendly beast (as the vet put it, "He doesn't bite!) and we miss him.
Thanks for your continued prayers and kind acts; they keep us going.
Saturday, March 26, 2011
Bzzzzzzzzzz....
The sound of Ramsy's beard buzzing off..... The Beards to Battle Cancer contest ended today, and Ramsy is smooth-jowled once again! Hooray! This is the 3rd day of chemo, so he was not feeling up to attending the judging. I took some pictures of him along and went to see the contest. I'm glad I didn't have to pick a winner, because there were some great beards there! Ramsy won a prize for collecting the second-highest amount in donations- $3007! Your support has been tremendous! Thank you all. The contest raised $23,800 for Central Plains Cancer Care, and the man who spearheaded the event told the crowd that his original hope for the grand total was $3000!
Ramsy has been walking around the house a little bit, sometimes pushing the wheelchair or leaning against the wall/table/thing that's stable, and sometimes unassisted. This afternoon he became completely exhausted, as we expected, so it may be a couple of weeks before he is back on his feet, so to speak! It is definitely easier for us to go through the second round than the first, because we know what to expect and don't find the results quite so alarming. We have pretty well planned a week of movies, napping and sitting on the couch. (OK, the kids are home for Spring Break, so there will be slightly more activity than that around here!)
We'll post some before and after pics of the bearded/beardless man in a few days once Ramsy has the energy to show me how to do it!
Ramsy has been walking around the house a little bit, sometimes pushing the wheelchair or leaning against the wall/table/thing that's stable, and sometimes unassisted. This afternoon he became completely exhausted, as we expected, so it may be a couple of weeks before he is back on his feet, so to speak! It is definitely easier for us to go through the second round than the first, because we know what to expect and don't find the results quite so alarming. We have pretty well planned a week of movies, napping and sitting on the couch. (OK, the kids are home for Spring Break, so there will be slightly more activity than that around here!)
We'll post some before and after pics of the bearded/beardless man in a few days once Ramsy has the energy to show me how to do it!
Monday, March 21, 2011
Feelin' Groovy
Hey friends, we are relaxing and enjoying ourselves in a hotel for a couple of days while our kids spend time with relatives. We feel like royalty as we "receive" visitors at our hotel room! One of my favourite things to see is Ramsy making his way around the room out of the wheelchair- hanging on to the walls and beds, surely, but on his own two feet instead of on wheels. His strength is still pretty minimal, but it has improved in the last couple of days.
Looking ahead a couple of days, he will be starting his next chemo round shortly. We are mentally better prepared this time for the fatigue and are basically planning a week of rest. I'm sure I will be heading to the library for some good movies and maybe a couple of audiobooks. He finds it easier to follow a book audibly than visually. He is also enjoying some issues of Popular Science and Macleans. Wouldn't read the scrapbooking magazine I brought along, though- go figure.
He is quite looking forward to shaving off the beard next Saturday and hopes to be able to attend the "judging" BBQ that day. (Last call for donations!)
Looking ahead a couple of days, he will be starting his next chemo round shortly. We are mentally better prepared this time for the fatigue and are basically planning a week of rest. I'm sure I will be heading to the library for some good movies and maybe a couple of audiobooks. He finds it easier to follow a book audibly than visually. He is also enjoying some issues of Popular Science and Macleans. Wouldn't read the scrapbooking magazine I brought along, though- go figure.
He is quite looking forward to shaving off the beard next Saturday and hopes to be able to attend the "judging" BBQ that day. (Last call for donations!)
Thursday, March 10, 2011
On the Upswing
We have been happy over the last couple of days to see improvements in Ramsy's energy compared to a week ago. He is feeling quite a bit better and looking forward to having a couple of good weeks before the next chemo treatment. When I spoke with his nurse about his fatigue, she said it typically sets in around the third day of treatment and begins letting up about day 9. This is pretty much what we experienced, and now we will be mentally better prepared next time. Just have to plan for a week of resting!
The amazing beard continues to flourish and donations have been coming in steadily. Thank you! One of our kids asked tonight why people would donate money for a beard! She got it when we explained that the money is not for the beard, it's for helping people with cancer and the beard contest just makes it a bit fun. The beard "judging" is on the 26th, and we will be able to give you a total then.
The amazing beard continues to flourish and donations have been coming in steadily. Thank you! One of our kids asked tonight why people would donate money for a beard! She got it when we explained that the money is not for the beard, it's for helping people with cancer and the beard contest just makes it a bit fun. The beard "judging" is on the 26th, and we will be able to give you a total then.
Thursday, March 3, 2011
Downhill all the way!
Well, Ramsy has had his first round of the second set of chemo treatments. It is the same chemo drug as before, so we were confident that side effects would be minimal. Wrong! This dose is more than double what he was taking last time, and it knocked his energy right out! By the fourth day of five he had no energy at all (probably because he was out for three hours the evening before) and was also experiencing some pretty bad headaches. We're not sure whether these were caused by the anti-nausea drug (can be one of the side effects) or one of his other many drugs, or if his medications needs adjusting- we're waiting to hear the blood test results for that. Speech is quite difficult for him these days, and just for added fun he had a seizure in the night once and the next day he fell. We know how to party! It is difficult for all of us to live in a constant state of flux. Sometimes we just have to laugh, and sometimes we just have to cry. What else can you do?
Some of you have said that you feel bad about not phoning or dropping in, but I will tell you honestly that we know you are thinking of us and love us. We love your prayers and the cards or emails that you send- they mean so much to us. Since it is so difficult for Ramsy to talk on the phone but he is able to read your well-wishes, that is a great way to let him know you are thinking of him.
Some of you have said that you feel bad about not phoning or dropping in, but I will tell you honestly that we know you are thinking of us and love us. We love your prayers and the cards or emails that you send- they mean so much to us. Since it is so difficult for Ramsy to talk on the phone but he is able to read your well-wishes, that is a great way to let him know you are thinking of him.
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