In May, 2006, I was diagnosed with gallbladder cancer, a rare and aggressive form of cancer with a poor prognosis. Information was hard to find, and I want to chronicle my experiences, to share what I have learned about this diagnosis and its physical and emotional implications. I also want to explore the spiritual implications of receiving a life threatening diagnosis.
Friday, May 18, 2007
Comments? Let's try this
For reasons I don't understand, my last post doesn't have the little "Comments" box at the bottom. I'm going to try making this entry, to see if a comments box appears so folks can respond to "Waiting for the Words."
So you ask some tough questions....As one who does not particularly like expressing myself through the written word, this feels like an assignment that I’d rather put off. I feel a bit distracted like the student who heads down the dorm hallway to see a buddy, or checks their IM, or surfs Facebook. (And if these are foreign concepts, you [reader] likely don’t have a college age student in your midst.) As an adult, how many of us just check our email – again and again, rather than face the task at hand? Or, as I have done since attempting to write this post – taken a break for a snack, and then another…
You say that we don’t like to talk about dying. I think the reason for that is varied. It stirs memories. It evokes feelings of sadness, a sense of permanent loss. It’s something we all know we have to face with family, with friends. And in thinking about it, we worry. Will I do the right thing, say the right thing? What if I upset my ____ (friend, sister, dad etc.) by bringing up the subject? What if I start to ask those “tough” questions at the wrong time? I just want to help. I want to be someone you can lean on, talk to, send on an errand, or sit with in silence. I just want to be your friend. And if that includes exploring these hard issues, that’s okay with me.
Lynne, you do pose some deep, difficult questions. Questions that I will be pondering right along with you. If you have some answers I hope you will share them, so that we can learn together how to live out whatever is left of our lives. It is so hard to get people to talk about mortality, yet, as you say dying is a part of the life. I think the reason is that we don't want to face the loss of someone we love if we're the survivor; and we don't want to acknowledge what we will miss if we're the one leaving. Either way, we're afraid of the loss. I don't know if I'm making sense, but I hope I am.
I hope you will find your way through this transition and be able and willing to continue to talk to us about what you are experiencing. I, like Sandy, just want to be able to help. If having someone to talk to about death will do that then I'm here to converse. I continue to wish you more energy, no pain, laughter, love, time to enjoy your garden, fish pond, Cape Cod, and the family.
Yes Lynne ....and Sandy and Sondra....this is a difficult topic, and I have far more questions than answers. I LOVE expressing my thoughts through the written word, but this is a topic that finds my fingers poised over the keyboard unwilling to move. Nevertheless....here goes: I know in my head and in my heart that where we go when we leave this place is unimaginably better. I KNOW it....but honestly, I don't FEEL it. I WANT to feel it, for I want to look forward to eternal life - for myself and for all of us. Jim told me recently that as his mother was nearing her death she said that she was "not ready to leave this beautiful place". I know from Jim that she was a woman of great faith so I am sure she also knew in her head and heart that she would be in a far more beautiful place after her death. I expect that she expressed those thoughts at the beginning of her spiritual transition, and I'm willing to bet that when the time came, her transition was complete. I am not much for transitions. ;-) I want to BE there spiritually. I want to be EAGER for eternal life. Lynne, I think you are far more patient with spiritual transitions than many of us, and I think your desire for words is evidence of that. As you read and think and type, the words will drive the transition, and you will BE there when you need to be. Well, my fingers have stopped moving, so I guess this is all I have....for now. I am grateful that you are willing to share this most personal of spiritual transitions with us. I am rooting and cheering for you, and praying for the journey to be both rich and smooth. Love, Mary
Some people feel that because I work in healthcare, that I can handle situations like this better. The comment was made to me recently; but I quickly corrected it.
How do you do it, how do you deal with it? It get's absorbed in me...through them I see me, I am left wondering left saying what if. And with each instance, saddened...It's something that has become all too familiar with me, not because of where I work but just because it's there. You often post about flowers and spring blooms. And when I see that it sparks a memory in me. I am an ametuer gardner, I moved into a new area and I didn't know anything about planting; my neighbor started me off with hostas that her friend gave her. These hostas surround our complex, as with each year they have multiplied and doubled...My neighbors friend lost her fight, and that touched me, because I felt that her friend in a sense "lived on" and was always with us. And last year, I lost my gardening neighbor last year, and my new love for spring had somehow diminished. But this spring as the hostas started budding through, I looked at the one she help plant in my garden. And stood there, and for a moment felt sad, but I remembered what she said to me about her friends hosta, and my comment of her being with her always. I know have that same thought with each spring, looking at the flowers bloom; and remembering our love of flowers and gardening. And knowing that she is with me always.
Does it get me through day to day, no...but I do that you are surrounded by people who love you more than words can say. Do know that we are absorbing some of your pain, some of your heartache...all wishing we could take it away. But we are here, and when those words come to you; and your questions become answered...it's not a walk that you will take alone.
(My Previous Post below)
No Longer Invincible
Last night I was called into a patients room, because she was having trouble breathing. She was dying...As I looked into her eyes, I could see that she was afraid; as we worked around her; working to make her comfortable, I could feel her fear. Was it the fear of passing to the other side, the fear of being surrounded by strangers or just wanting a little more time here... Soon her family made it in, with us watching as they came in and out of her room with teary eyes and red faces; each on their cellphones making calls about her condition. We continue with our regular routine; but in my mind I am still in her room; feeling her fear... I have traveled some harsh paths in my life; and at times wished to be on the other side; but having found my soul mate and having the two best children anyone could ask for...I no longer feel that way, but her fear felt so real to me; it is now a fear that I have...I want an infinity of time with my loved ones and friends; but it has become so aware to me, that through my work; how it is out of our hands. I never feared this before, because I never worked in an environment where I was faced with it everyday; but now that I do work in it's capacity (death), I no longer feel invincible...
Lynne, I don't think any of us know what each day will bring until it dawns. I, for one, begin each day with a feeling of being grateful that I am able to swing my legs from the bed and move to the rhythm of the day...whatever it may bring. Will your body betray the energy that is still living inside your mind...your spirit?...Will it not be able to keep up because of it's weakened state from the disease and from the chemo? Who can say? I think you will probably find that it will waver from day to day...but your mind will continue trying to decifer the mysteries of each day...each moment....each stage...each step of the journey of life and through death. I think that the fact that our inner being feels so much the same as it did when we were younger....how we can recall to the most minute detail a vivid experience of our childhood ...even feeling the intense feelings we experienced waaaay back when is a testimony to the fact that we do indeed HAVE a spirit that transcends the earthly body we now possess that slowly ages ( or quickly depending on if one is living with a teenager)...and that our spirit is ageless...and immortal...and will never die. I sometimes have moments when I feel EXACTLY as I did at a younger age.....I look different....I have grey in my hair( well...I like to think of it as silver highlights...heehee) and my skin is not as translucent and my hands are wrinkled, my eyes not as clear...but I SO feel the same inside!! Sometimes this is a good thing...and sometimes not...ha! Like haven't we all felt just like we were 12 when in our parents' house...even if we were a professional, mom of three and so in control of our lives? ...I think I've transgressed here. I think in dying...we lose the earthly "anchor" of our decaying body and our spirit becomes free to dance in the light. It's funny how we hang on to this life with all it's pain and sorrow. I guess for me...my biggest sorrow would be in not being here for my children. But we truly DON'T know if we will wake up tomorrow...so we need to be here now...say our "I love you"'s and get our hugs and not waste a precious moment. I am wishing you many precious moments, many hugs and "I love you"'s and lots of time to ponder such mysteries of life!! lovingly, Cori
dear lynnie, my check in. note to others: i met lynne at spring hill opening the heart so much of my language is workshop short-hand. it was hard to hold the balance between giving you the view of MY experience and trying to stay present to yours. HD makes this more difficult, so forgive me my imbalances.:D
my check-in; my truth in the moment. i hate transitions, avoid them at all costs!!! LOL i hate the destablizing of shifting from one trusted belief or "reality" to another. i have jumped off cliffs to avoid the transistions of decent!! my advice, AVOID THEM. my experience, TREASURE THEM!! the process of life grinding you down to purity is worth it - at least in hindsight. :D
re: after life -i am so happy in the flood of escasy when i remember that i will be back with divine presence when i die -- that staying here is HARD!!!! nothing compares to my heart soar of joy and longing!!
i have spent most of of life actively focused on dying. HUGE COSMIC joke here. look at the 2 statements above; i hate transitions and want to be back with my divine beloved now!!!! what disease do i have ?? huntington's -- it takes 15 - 25 years to kill you. i am blessed!
i told you when willa died i wasn't past my self-centered anger. which you of course took in stride. i will miss your striding most of all!! your blog and you accessabilty thru this has been so precious to me -- not anger but gratitude.
as you know, my attention has been most constantly focused on dying, and i agree it's something our society doesn't talk about. so i have LOTS. my great-grandfather, grand-uncles, grandmother and mom all died of huntington's. thank the gods my sister won't and 2 of my kids don't!! you see the constant frame here? who has it, who hasn't. my constant comfort to myself about this HORRIBLE disease has been the conviction of killing myself rather than dying of it. every day, several times a day asking about dying. it took a lot of fear off of me but subsituted disconnection from LIFE.
consciousness demands attention and JOY in life. what i have learned is i have spent most of my life focused on huntington's, in both good and bad ways. and the truth is life is terminal AND at any moment.
i am SO happy to see you soon!! i want to sit with you in the garden and laugh.
hi....Words are not my thing. I am a hugger, a crier (sometimes I cry hoping that the tears I shed somehow lightens the amount of tears you shed), a doer and a feeler of emotions that sometimes I can express and sometimes I can't. I understand at some level why you cdon't have the word...we have practiced so many conversations in life...talking about our jobs, our kids, the world siturations etc., but this is VERY new territoroy, so we all feel very awkward and vulnerable. It takes someone with your courage to take the first step and get the conversation started.
Sooooo I think your instincts to read the books on spirituality, to enjoy each day and allow all of us to somehow ease your strife and/or give you some energy etc. are on the right track. As I sit here, I am mentally hugging you and crying with you as you look at the days ahead and think of your dear family. I can't imagine the emotional pain, but I do know that the love of God and all your friends and family will someone help you through it. I love you, feel for you, cry for you, admire you trust in your ability to get through this with grace.
as i sit to respond to your post, i feel at a loss for words, but i will write anyway and see what comes- wow !!! was my first thought when i read your post- for someone with nothing to say, you said a lot !!! and the others who have written in response say very profound things- i have thought about death a lot as lexie and i have grieved the deaths of eight kids who had brain tumors this year, some we know better , some less- all of whose parents i felt i knew well- i think the thing i feel most about this part of your life is that you should do whatever you want, almost all of the time- as your time for putting things off may be shorter than you had figured it would be- i am often guilty of saying, we'll do this or that later(mostly in my relationship with my darling partner)- but all these deaths have taught me to do it NOW, and not to wait- so at least with my kids, i live a bit frenetically trying to "get it all in", in case-so now lynne, it seems as if it is YOUR time, to do what you would most like to do, albeit at a bit of a less insane pace due to limited physical energy- my friend annie has lymes and has had it for a long time- she has a spoon theory- if you have a handful of spoons and that is all your energy, you need to use it up one spoon at a time, cause when the spoons are gone, you're done- so pacing of what you want to do with your time becomes important- so now, whatever to do ??? what is your heart's desire ??? you know you have people all over the place who are willing to make it happen, so take your time to figure out what it is and go for it !!!!! lynne- i love you friend, and will be glad to speak in person when you are able and if it is part of what you decide to do with your time- love, alice
First, I have to apologize that I have been so self involved for the past 18 months that I didn't realize that the cancer had gotten to this level.
I actually think of you frequently, missing our time together at church and especially in choir. (Obviously I have become the missing link here...)
Andy and Ian met up with Patty and Lucy at the soccer fields tonight, and Patty gave him this sight. I have been reading your posts and the wonderful comments you have been getting. Like Gwen, I'm not always a great with words person. I guess I'm probably not a hugger either....leaving me to pray for your health, happiness and peace.
I miss your calm, and your sense of humor. But I can fix that on a Sunday morning. Look for me and know you're pulling me back to where I should have been. Please forgive my ignorance in not understanding where you have been going these past months.
My thoughts and prayers are with you, Patty, Lucy and Nathaniel.
9 comments:
So you ask some tough questions....As one who does not particularly like expressing myself through the written word, this feels like an assignment that I’d rather put off. I feel a bit distracted like the student who heads down the dorm hallway to see a buddy, or checks their IM, or surfs Facebook. (And if these are foreign concepts, you [reader] likely don’t have a college age student in your midst.) As an adult, how many of us just check our email – again and again, rather than face the task at hand? Or, as I have done since attempting to write this post – taken a break for a snack, and then another…
But you’ve [Lynne] asked us to join you in this dialog and as an avid reader of your blog it seems only fair to try. Frankly it is easier for me to post a few words of encouragement, a meaningful quote, or something cheerful – all of it intended to lift your spirits. You are entering a different phase of living with a terminal illness. I think some of what you grapple with has to do with the unknowns. There are lots of them. How much time, what kind of quality, what about Patty and Lucy and Nathaniel?.....What really is it that you can expect of your body today, tomorrow? How do you plan for a day (or part of a day) of activities when you aren’t sure what you’ll feel up to? Energy is tough to quantify, and tougher yet to predict. But at the risk of sounding cliché – staying flexible, living in the moment, and just going with the flow seem like sensible strategies.
You say that we don’t like to talk about dying. I think the reason for that is varied. It stirs memories. It evokes feelings of sadness, a sense of permanent loss. It’s something we all know we have to face with family, with friends. And in thinking about it, we worry. Will I do the right thing, say the right thing? What if I upset my ____ (friend, sister, dad etc.) by bringing up the subject? What if I start to ask those “tough” questions at the wrong time? I just want to help. I want to be someone you can lean on, talk to, send on an errand, or sit with in silence. I just want to be your friend. And if that includes exploring these hard issues, that’s okay with me.
love, Sandy
Lynne, you do pose some deep, difficult questions. Questions that I will be pondering right along with you. If you have some answers I hope you will share them, so that we can learn together how to live out whatever is left of our lives. It is so hard to get people to talk about mortality, yet, as you say dying is a part of the life. I think the reason is that we don't want to face the loss of someone we love if we're the survivor; and we don't want to acknowledge what we will miss if we're the one leaving. Either way, we're afraid of the loss. I don't know if I'm making sense, but I hope I am.
I hope you will find your way through this transition and be able and willing to continue to talk to us about what you are experiencing. I, like Sandy, just want to be able to help. If having someone to talk to about death will do that then I'm here to converse. I continue to wish you more energy, no pain, laughter, love, time to enjoy your garden, fish pond, Cape Cod, and the family.
Sondra
Yes Lynne ....and Sandy and Sondra....this is a difficult topic, and I have far more questions than answers. I LOVE expressing my thoughts through the written word, but this is a topic that finds my fingers poised over the keyboard unwilling to move. Nevertheless....here goes:
I know in my head and in my heart that where we go when we leave this place is unimaginably better. I KNOW it....but honestly, I don't FEEL it. I WANT to feel it, for I want to look forward to eternal life - for myself and for all of us. Jim told me recently that as his mother was nearing her death she said that she was "not ready to leave this beautiful place". I know from Jim that she was a woman of great faith so I am sure she also knew in her head and heart that she would be in a far more beautiful place after her death. I expect that she expressed those thoughts at the beginning of her spiritual transition, and I'm willing to bet that when the time came, her transition was complete.
I am not much for transitions.
;-) I want to BE there spiritually. I want to be EAGER for eternal life. Lynne, I think you are far more patient with spiritual transitions than many of us, and I think your desire for words is evidence of that. As you read and think and type, the words will drive the transition, and you will BE there when you need to be.
Well, my fingers have stopped moving, so I guess this is all I have....for now. I am grateful that you are willing to share this most personal of spiritual transitions with us. I am rooting and cheering for you, and praying for the journey to be both rich and smooth.
Love,
Mary
Some people feel that because I work in healthcare, that I can handle situations like this better. The comment was made to me recently; but I quickly corrected it.
How do you do it, how do you deal with it? It get's absorbed in me...through them I see me, I am left wondering left saying what if. And with each instance, saddened...It's something that has become all too familiar with me, not because of where I work but just because it's there. You often post about flowers and spring blooms. And when I see that it sparks a memory in me. I am an ametuer gardner, I moved into a new area and I didn't know anything about planting; my neighbor started me off with hostas that her friend gave her. These hostas surround our complex, as with each year they have multiplied and doubled...My neighbors friend lost her fight, and that touched me, because I felt that her friend in a sense "lived on" and was always with us. And last year, I lost my gardening neighbor last year, and my new love for spring had somehow diminished. But this spring as the hostas started budding through, I looked at the one she help plant in my garden. And stood there, and for a moment felt sad, but I remembered what she said to me about her friends hosta, and my comment of her being with her always. I know have that same thought with each spring, looking at the flowers bloom; and remembering our love of flowers and gardening. And knowing that she is with me always.
Does it get me through day to day, no...but I do that you are surrounded by people who love you more than words can say. Do know that we are absorbing some of your pain, some of your heartache...all wishing we could take it away. But we are here, and when those words come to you; and your questions become answered...it's not a walk that you will take alone.
(My Previous Post below)
No Longer Invincible
Last night I was called into a patients room, because she was having trouble breathing. She was dying...As I looked into her eyes, I could see that she was afraid; as we worked around her; working to make her comfortable, I could feel her fear. Was it the fear of passing to the other side, the fear of being surrounded by strangers or just wanting a little more time here...
Soon her family made it in, with us watching as they came in and out of her room with teary eyes and red faces; each on their cellphones making calls about her condition. We continue with our regular routine; but in my mind I am still in her room; feeling her fear...
I have traveled some harsh paths in my life; and at times wished to be on the other side; but having found my soul mate and having the two best children anyone could ask for...I no longer feel that way, but her fear felt so real to me; it is now a fear that I have...I want an infinity of time with my loved ones and friends; but it has become so aware to me, that through my work; how it is out of our hands. I never feared this before, because I never worked in an environment where I was faced with it everyday; but now that I do work in it's capacity (death), I no longer feel invincible...
Lynne,
I don't think any of us know what each day will bring until it dawns. I, for one, begin each day with a feeling of being grateful that I am able to swing my legs from the bed and move to the rhythm of the day...whatever it may bring. Will your body betray the energy that is still living inside your mind...your spirit?...Will it not be able to keep up because of it's weakened state from the disease and from the chemo? Who can say? I think you will probably find that it will waver from day to day...but your mind will continue trying to decifer the mysteries of each day...each moment....each stage...each step of the journey of life and through death.
I think that the fact that our inner being feels so much the same as it did when we were younger....how we can recall to the most minute detail a vivid experience of our childhood ...even feeling the intense feelings we experienced waaaay back when is a testimony to the fact that we do indeed HAVE a spirit that transcends the earthly body we now possess that slowly ages ( or quickly depending on if one is living with a teenager)...and that our spirit is ageless...and immortal...and will never die.
I sometimes have moments when I feel EXACTLY as I did at a younger age.....I look different....I have grey in my hair( well...I like to think of it as silver highlights...heehee) and my skin is not as translucent and my hands are wrinkled, my eyes not as clear...but I SO feel the same inside!! Sometimes this is a good thing...and sometimes not...ha! Like haven't we all felt just like we were 12 when in our parents' house...even if we were a professional, mom of three and so in control of our lives? ...I think I've transgressed here.
I think in dying...we lose the earthly "anchor" of our decaying body and our spirit becomes free to dance in the light.
It's funny how we hang on to this life with all it's pain and sorrow.
I guess for me...my biggest sorrow would be in not being here for my children. But we truly DON'T know if we will wake up tomorrow...so we need to be here now...say our "I love you"'s and get our hugs and not waste a precious moment.
I am wishing you many precious moments, many hugs and "I love you"'s and lots of time to ponder such mysteries of life!!
lovingly,
Cori
dear lynnie, my check in.
note to others: i met lynne at spring hill opening the heart so much of my language is workshop short-hand. it was hard to hold the balance between giving you the view of MY experience and trying to stay present to yours. HD makes this more difficult, so forgive me my imbalances.:D
my check-in; my truth in the moment. i hate transitions, avoid them at all costs!!! LOL i hate the destablizing of shifting from one trusted belief or "reality" to another. i have jumped off cliffs to avoid the transistions of decent!! my advice, AVOID THEM. my experience, TREASURE THEM!! the process of life grinding you down to purity is worth it - at least in hindsight. :D
re: after life -i am so happy in the flood of escasy when i remember that i will be back with divine presence when i die -- that staying here is HARD!!!! nothing compares to my heart soar of joy and longing!!
i have spent most of of life actively focused on dying. HUGE COSMIC joke here. look at the 2 statements above; i hate transitions and want to be back with my divine beloved now!!!! what disease do i have ?? huntington's -- it takes 15 - 25 years to kill you. i am blessed!
i told you when willa died i wasn't past my self-centered anger. which you of course took in stride. i will miss your striding most of all!! your blog and you accessabilty thru this has been so precious to me -- not anger but gratitude.
as you know, my attention has been most constantly focused on dying, and i agree it's something our society doesn't talk about. so i have LOTS. my great-grandfather, grand-uncles, grandmother and mom all died of huntington's. thank the gods my sister won't and 2 of my kids don't!! you see the constant frame here? who has it, who hasn't. my constant comfort to myself about this HORRIBLE disease has been the conviction of killing myself rather than dying of it. every day, several times a day asking about dying. it took a lot of fear off of me but subsituted disconnection from LIFE.
consciousness demands attention and JOY in life. what i have learned is i have spent most of my life focused on huntington's, in both good and bad ways. and the truth is life is terminal AND at any moment.
i am SO happy to see you soon!! i want to sit with you in the garden and laugh.
LOVE palua
hi....Words are not my thing. I am a hugger, a crier (sometimes I cry hoping that the tears I shed somehow lightens the amount of tears you shed), a doer and a feeler of emotions that sometimes I can express and sometimes I can't. I understand at some level why you cdon't have the word...we have practiced so many conversations in life...talking about our jobs, our kids, the world siturations etc., but this is VERY new territoroy, so we all feel very awkward and vulnerable.
It takes someone with your courage to take the first step and get the conversation started.
Sooooo I think your instincts to read the books on spirituality, to enjoy each day and allow all of us to somehow ease your strife and/or give you some energy etc. are on the right track. As I sit here, I am mentally hugging you and crying with you as you look at the days ahead and think of your dear family. I can't imagine the emotional pain, but I do know that the love of God and all your friends and family will someone help you through it. I love you, feel for you, cry for you, admire you trust in your ability to get through this with grace.
GWEN
as i sit to respond to your post, i feel at a loss for words, but i will write anyway and see what comes-
wow !!! was my first thought when i read your post- for someone with nothing to say, you said a lot !!! and the others who have written in response say very profound things-
i have thought about death a lot as lexie and i have grieved the deaths of eight kids who had brain tumors this year, some we know better , some less- all of whose parents i felt i knew well-
i think the thing i feel most about this part of your life is that you should do whatever you want, almost all of the time- as your time for putting things off may be shorter than you had figured it would be- i am often guilty of saying, we'll do this or that later(mostly in my relationship with my darling partner)- but all these deaths have taught me to do it NOW, and not to wait- so at least with my kids, i live a bit frenetically trying to "get it all in", in case-so now lynne, it seems as if it is YOUR time, to do what you would most like to do, albeit at a bit of a less insane pace due to limited physical energy- my friend annie has lymes and has had it for a long time- she has a spoon theory- if you have a handful of spoons and that is all your energy, you need to use it up one spoon at a time, cause when the spoons are gone, you're done- so pacing of what you want to do with your time becomes important-
so now, whatever to do ??? what is your heart's desire ??? you know you have people all over the place who are willing to make it happen, so take your time to figure out what it is and go for it !!!!!
lynne- i love you friend, and will be glad to speak in person when you are able and if it is part of what you decide to do with your time-
love, alice
Hi Lynne!
First, I have to apologize that I have been so self involved for the past 18 months that I didn't realize that the cancer had gotten to this level.
I actually think of you frequently, missing our time together at church and especially in choir. (Obviously I have become the missing link here...)
Andy and Ian met up with Patty and Lucy at the soccer fields tonight, and Patty gave him this sight. I have been reading your posts and the wonderful comments you have been getting. Like Gwen, I'm not always a great with words person. I guess I'm probably not a hugger either....leaving me to pray for your health, happiness and peace.
I miss your calm, and your sense of humor. But I can fix that on a Sunday morning. Look for me and know you're pulling me back to where I should have been. Please forgive my ignorance in not understanding where you have been going these past months.
My thoughts and prayers are with you, Patty, Lucy and Nathaniel.
Love,
Janyte
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