The nature of hope has me wondering about many, many things. My sister's prognosis is not good right now. In fact, it is very bleak unless a lot of "ifs" happen in a certain order and very quickly. Between the chemo and radiation, Patty's heart and lungs have been damaged. The transplant will not take place unless there are less than twenty percent "blasts" in her bone marrow and she is able to physically withstand the treatments necessary in order to give the transplant the best possible chance to succeed. Trying to treat anything before the leukemia, i.e. her heart or lungs, would only delay treating the leukemia, which is the most immediate threat. Do the phrases "a rock and a hard place" or "catch-22" spring up in anyone else's mind, too?
I am not sure Patty holds out much hope for herself right now and I do not feel certain I know how to encourage her with any real hope, without spawning false hope, in either or both of us. My mind and heart feel dried out, arid, and it is difficult for me to think very clearly. It is as if all of my hopes and prayers have gone, yet again, either unanswered or answered in the cruelest and bitterest fashion possible. The thing I have feared the most, and it has contended with many, many fears brought out by this entire situation, now seems to be at the doorstep and determined to enter a place it will never be welcomed or wanted. I feel I am being forced into the transition from hoping for Patty's recovery to trying to make her last days, weeks, and months as positive and loving, comfortable and peaceful, as possible.
I really wish I could, somehow, make everything all right again; that I could say a prayer or touch her, knowing she will be healed, increasing the time she has left here on earth. I wish I could guarantee my nephew and niece that they will be able to have their mother with them for all of their future triumphs and tragedies; to share all of their joys, sorrows, and secrets. For myself I wish I could go on in life knowing my family is safe and whole although with each loss, experienced or impending, we seem smaller and weaker; held together less by strength than by a weakening glue that is degrading slowly and threatening everything we have held dear our entire lifetimes. It is not just my sister's heart that has been damaged by all of this, but the heart of our family. Is there anything that can heal that?
John Lennon's words, that "life is what happens as we make other plans," have haunted me for years. They are more true than he may have realized at the time he put pen to paper, writing a song of father and son, family and love, wisdom and humor. Did they merely sound "right" to him, or did he truly understand the depth and breadth of what he was communicating? It is the most difficult part of life to even begin understanding that death is a very real part of that particular equation, too. Was that on his heart and mind the day he first sang those words; first spoke them outloud? With those few simple words was he trying to express humanity's mortality, or just offering a brief phrase to encourage his young son in his pursuits in life? Did he also include, as an after thought, that questions were a large part of the foundation we build with each breath we take; steal? Does, in fact, death rule our lives or is there truly hope outside of our existence, outside our realm of influence? It seems to be what almost every religion offers and is based upon. I wonder what God truly thinks of all of this, what he feels, if anything, about our pain and limitations, but also about our beauties and strengths.
I hope the weather is mostly lovely, that my nephew and niece choose to behave and help make their mother's remaining time, be it long or far too short, happy and loving, that our father and step-mother find the strength to persevere in patience and love, giving and caring despite the considerable obstacles placed before them, that Patty's and my youngest sister is able to find the inner peace she will need to get through all of this, and that I am able to do so, as well.
May peace be yours; love and laughter. May your troubles be few, your pains be minor, and your days happier than ours seem likely to be.
Izzlebug
Tuesday, July 17, 2007
Friday, July 13, 2007
A Change of Name Seemed In Order
As those who read this unassuming blog know, our family has been weathering several rather grave crises recently. My biopsy is in three days and my sister has horrible sores in her mouth, a result of the chemotherapy killing off her white cells. The biopsy does not feel like that big a deal, sort of like knowing I need to have a tooth pulled - along those lines, and Patty's white count is going back up slowly so her mouth will heal, eventually. In the mean time, though, reality sucks.
I try to talk to Patty as often as possible, although that can prove difficult depending on how many other phone calls or visitors she has, necessary interruptions from doctors and nursing staff, and so on. Right now I just want to cry because her mouth is so sore. She, having been the one of the two (or four) of us to successfully reproduce, says the pain in her mouth is worse than labor. I was there when my niece was born and I know it really hurt a lot, so it is heart-rending to know that this sister, who has been to hell and back several times in the past year-and-a-half, is now enduring something more painful than anything she has known previously. You can cuddle an ailing infant and comfort them with gentle humming and back rubs, but how do you accomplish the same thing for another adult, whom you love very much, when it is difficult to even manage a visit, for whatever reason? I can't help feeling our Mom would know what to do; we are forever her children, but she cannot be with us right now and an older sister is simply not the same thing.
Dear God, I wish I could take some of the pain upon myself, if only for awhile, in order to ease Patty's trials in all of this! It is amazing how petty and small one's own dilemmas seem to become when compared with the genuine suffering of a beloved younger sister. The flip side to all of this is that, given the nature of our relationship, any attempts at a physical expression of comfort, no matter how lovingly offered, would only annoy her - morphine is more of a comfort right now than an overly anxious sibling.
At least now we take the time during the close of our conversations to tell each other, "I love you." At least we know it has been said, with hearts and minds in full accord and both of us hearing one another clearly. If it is true that the love you hold while on earth travels with you to where ever it is we all end up after passing from this world, at least we will be wealthy in an abundance of love to keep us warm and comforted for eternity. Nothing can ever rob either of us of that - ever.
When we were small
Perhaps I thought of you as
Some kind of wiggly intruder,
A competitor for Mom's hugs, snuggles,
And hums - her version of singing
Lovely lullabies.
As we have grown, through pain
And joy, trial and sorrow,
I have learned to know
And love you.
As we were a part of our mother,
As your children are a part of you,
As surely as that
You are my sister,
In my heart forever,
Never forsaken,
Never forgotten,
Forever loved.
May your relationships with brothers, sisters, and close friends be more special with each moment you spend together. May your squabbles be few and far between, and forgiveness in every breath you take in each others' presence.
Izzlebug
I try to talk to Patty as often as possible, although that can prove difficult depending on how many other phone calls or visitors she has, necessary interruptions from doctors and nursing staff, and so on. Right now I just want to cry because her mouth is so sore. She, having been the one of the two (or four) of us to successfully reproduce, says the pain in her mouth is worse than labor. I was there when my niece was born and I know it really hurt a lot, so it is heart-rending to know that this sister, who has been to hell and back several times in the past year-and-a-half, is now enduring something more painful than anything she has known previously. You can cuddle an ailing infant and comfort them with gentle humming and back rubs, but how do you accomplish the same thing for another adult, whom you love very much, when it is difficult to even manage a visit, for whatever reason? I can't help feeling our Mom would know what to do; we are forever her children, but she cannot be with us right now and an older sister is simply not the same thing.
Dear God, I wish I could take some of the pain upon myself, if only for awhile, in order to ease Patty's trials in all of this! It is amazing how petty and small one's own dilemmas seem to become when compared with the genuine suffering of a beloved younger sister. The flip side to all of this is that, given the nature of our relationship, any attempts at a physical expression of comfort, no matter how lovingly offered, would only annoy her - morphine is more of a comfort right now than an overly anxious sibling.
At least now we take the time during the close of our conversations to tell each other, "I love you." At least we know it has been said, with hearts and minds in full accord and both of us hearing one another clearly. If it is true that the love you hold while on earth travels with you to where ever it is we all end up after passing from this world, at least we will be wealthy in an abundance of love to keep us warm and comforted for eternity. Nothing can ever rob either of us of that - ever.
When we were small
Perhaps I thought of you as
Some kind of wiggly intruder,
A competitor for Mom's hugs, snuggles,
And hums - her version of singing
Lovely lullabies.
As we have grown, through pain
And joy, trial and sorrow,
I have learned to know
And love you.
As we were a part of our mother,
As your children are a part of you,
As surely as that
You are my sister,
In my heart forever,
Never forsaken,
Never forgotten,
Forever loved.
May your relationships with brothers, sisters, and close friends be more special with each moment you spend together. May your squabbles be few and far between, and forgiveness in every breath you take in each others' presence.
Izzlebug
Wednesday, July 11, 2007
To Those Who Have Offered
This poem is intended as a "thank you" for all of those who have been keeping my family, and particularly my sister, in their prayers as we all go through this difficult and heart-rending time in our lives:
Prayers
“We are praying,”
I’ve been told
By those whose hearts
Are kind
Gentle minds and
Thoughtful deeds
From ones who cannot
Carry more
For those of us
In need.
“We are praying,”
They have said
When we have faced
Our worst dreads
We go through strife
Though with many qualms
But also knowing
The prayers
Are being passed around
For us
Like alms, from palm to palm.
“We are praying,”
Are the words
We may not feel
Are truly healing
But those prayers
Each kind word
Are really keeping us
From feeling
Totally alone
And in the dark
The healing, loving words
Of faith
Of others
Helps to steel our strength
And hold up our heads
On this truly bad day
I know then that God
In a non-human way
Is there to guide and
Heal and care
Through those who
Recall our family
In prayer.
Prayers
“We are praying,”
I’ve been told
By those whose hearts
Are kind
Gentle minds and
Thoughtful deeds
From ones who cannot
Carry more
For those of us
In need.
“We are praying,”
They have said
When we have faced
Our worst dreads
We go through strife
Though with many qualms
But also knowing
The prayers
Are being passed around
For us
Like alms, from palm to palm.
“We are praying,”
Are the words
We may not feel
Are truly healing
But those prayers
Each kind word
Are really keeping us
From feeling
Totally alone
And in the dark
The healing, loving words
Of faith
Of others
Helps to steel our strength
And hold up our heads
On this truly bad day
I know then that God
In a non-human way
Is there to guide and
Heal and care
Through those who
Recall our family
In prayer.
Friday, July 06, 2007
Cancer Invades More Than Just a Human Body
Yesterday I received some news from my doctor that is not good but it is not that bad, it just merely carries the potential for something that could be bad. They found some calcifications in my right breast that had not appeared on the mammograms before. In all likelihood, they are benign but, given our family's history with this type of disease, even the "maybe" can feel almost intolerable. I was going to "tough it out" and not mention it to anyone because of all the grief and anxiety we have all been experiencing with Patty's leukemia battles, but the thought occurred to me that, on the off chance it is not benign, it would be a devastating bombshell instead of a potential problem when I did tell people, so I opted instead to tell my Dad and step-mom about it. We agreed to wait and tell my sisters after the biopsy, which takes place within the next two weeks. I will know for certain before the end of the month and, if the doctor's predictions and the statistics hold true, we will all be able to heave a well deserved, collective sigh of relief.
It was rough telling Dad, although not as horrid as the news of Patty's illness was when we all first learned about it. I did not cry except when we talked about the seriousness of Patty's illness relative to my own troubles, which pale by comparison, but it was still difficult for him to hear. My Dad has a schizophrenic son, one daughter with leukemia who has just been through her third round of chemo, another daughter ("She Who Declines to be Named") who is about to have a nervous breakdown at the thought of possibly losing Patty, and now me facing this potential diagnosis with an already diagnosed genetic predisposition for breast and ovarian cancers with an additional diagnosis of ovarian cysts, which get checked on again in a couple of days. All of this is the only reason I hesitated at all to tell him, but it seemed like not telling him could cause too much of a shock should the news be bad. In this situation it is difficult to know exactly what is best, but keeping communications open and up to date seems to be about the best way to handle things all around, even though it can be very painful to do so sometimes.
At the moment, though up at an odd hour typing my blog, I feel fairly calm and like things will work out with this potentially very bad situation. We have had so much to contend with that it seems doubly unfair for there to be any more stresses in any of our lives, but things keep piling on, travail upon travail, until the fan the "you-know-what" is supposed to be hitting has been long buried and we hardly know what to think or feel. I guess there is something to be said about feeling numb after all.
I tried very hard to remain upbeat and positive while talking to Dad and, in truth, I do not feel that "doomed" by the present difficulty because I know the most likely diagnosis will be that it is benign and there is little to worry about, at least for awhile yet, although I do feel nervous about the test and the possible bad tidings. I told Dad that it wasn't fair for Patty to be the one having all of the fun and that, until the end of the month, following the biopsy, I would not know anything except fear - which did get a weak chuckle from him. You really learn to find humor in the strangest situations, grim and difficult though they are, and it seems vitally important to be able to do just that - grim or not.
So, anyway, to anyone who may find their way to my blog, that is what this little family is going through at the moment. May your troubles be far fewer and of lesser import than ours and may you find love and laughter in the oddest places. It is training that will hold you in good stead for the future.
Izzlebug
It was rough telling Dad, although not as horrid as the news of Patty's illness was when we all first learned about it. I did not cry except when we talked about the seriousness of Patty's illness relative to my own troubles, which pale by comparison, but it was still difficult for him to hear. My Dad has a schizophrenic son, one daughter with leukemia who has just been through her third round of chemo, another daughter ("She Who Declines to be Named") who is about to have a nervous breakdown at the thought of possibly losing Patty, and now me facing this potential diagnosis with an already diagnosed genetic predisposition for breast and ovarian cancers with an additional diagnosis of ovarian cysts, which get checked on again in a couple of days. All of this is the only reason I hesitated at all to tell him, but it seemed like not telling him could cause too much of a shock should the news be bad. In this situation it is difficult to know exactly what is best, but keeping communications open and up to date seems to be about the best way to handle things all around, even though it can be very painful to do so sometimes.
At the moment, though up at an odd hour typing my blog, I feel fairly calm and like things will work out with this potentially very bad situation. We have had so much to contend with that it seems doubly unfair for there to be any more stresses in any of our lives, but things keep piling on, travail upon travail, until the fan the "you-know-what" is supposed to be hitting has been long buried and we hardly know what to think or feel. I guess there is something to be said about feeling numb after all.
I tried very hard to remain upbeat and positive while talking to Dad and, in truth, I do not feel that "doomed" by the present difficulty because I know the most likely diagnosis will be that it is benign and there is little to worry about, at least for awhile yet, although I do feel nervous about the test and the possible bad tidings. I told Dad that it wasn't fair for Patty to be the one having all of the fun and that, until the end of the month, following the biopsy, I would not know anything except fear - which did get a weak chuckle from him. You really learn to find humor in the strangest situations, grim and difficult though they are, and it seems vitally important to be able to do just that - grim or not.
So, anyway, to anyone who may find their way to my blog, that is what this little family is going through at the moment. May your troubles be far fewer and of lesser import than ours and may you find love and laughter in the oddest places. It is training that will hold you in good stead for the future.
Izzlebug
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