"You have no idea". How many times have you said that. If you are like me: a chronic cancer patient, been in the fight for years, always being hunted and hounded by the enemy, then you know what I'm talking about. People will ask you...how do you live with it??? I write about it all the time....living with the knowing. I describe the constant drone of my diagnosis as suffocating,
being held under water and let up to breathe every so often, just enough, just for a moment in time, to keep going. I describe it as a daily battle and part of a war. I describe it as a path I have to walk....I have no choice....no matter how crooked and hilly the path gets. But someone wrote a description in Cure magazine that I saw on their website and they hit the nail on the head.
To paraphrase, the woman was talking about what it is like to live with a Stage IV diagnosis and she described it something like this: It's like having a radio constantly playing in your head that is distracting you from life. You can never turn it off. You can only learn to turn down the volume.
I am not a crier, but those words brought tears to my eyes. Because that woman knows. She knows what it is like to live my life. She does have an idea of what it's like to have the constant cloud of cancer as your companion. And she found a way to describe it perfectly.
And so the radio plays on. There are some days when the volume is way up and I can't make the noise fade into the background. But most days, I make it a point to turn the volume down and listen to the sounds of life and the living. I am sure that this woman, like me, longs for the days when the soundtrack of her life played only the music she wanted to hear. Now we have
that irritating type of music you hear in the elevator. The kind of low-playing garbage that makes you want to hurry up and get off on your floor. If only we could........
So now, you of the undiagnosed and healthy, have an idea what it's like.
Friday, March 27, 2009
Monday, March 23, 2009
Clinging to small things
The things we cling to. I have to admit, sometimes they are so trivial, and yet they are so important. I met with Maha last week. I confessed that I was not tolerating the Taxotere/Xeloda regimen as well as I had five years ago. The doses must be different, I said. Five years ago, I did not get this tired, I did not have trouble with my mouth hands and feet, I did not lose my hair. I could barely tell I was getting anything. What is different this time?
The doses are slightly stronger...but mainly my body is getting tired of all the chemo. All the drugs...so many rounds of drugs. I have stopped counting. And now I have a brand new side effect that I had been complaining about for weeks. I told Janet, now I told Maha. My eyes will not stop watering. It is such a small thing but so irritating. Imagine what it is like to look through your tears about fifty percent of the time. I am constantly wiping, dabbing and blinking.
Maha told me it is a side effect of Taxotere.....(wow, really???I had no idea)... but it could also be that because I had no eyelashes that dirt and dust was........"No!" I stopped her right there. I HAVE EYELASHES! They are just so wet and clumped together you can't see them. But if I put on mascara, they are there!!
She just nodded and I felt stupid, becuase I am clinging to my eyelashes. I am also clinging to my eyebrows. I am losing the hair on my head with a slow and determined shed. I have had my head buzzed to 1-inch all around to keep it from hurting so much. I have a re-styled wig ready to go......but I am clinging to the fact that I will keep my eyelashes and eyebrows. I know it is impossible to fool anyone with even the best wig if you don't have eyelashes and eyebrows. They are a small yet strong source of vanity for me. Keep them and I can look healthy to those who don't know me. Eye make-up stays in place; wig-bangs can be brushed aside without the fear of revealing no brows. Here I am, after so many years, so many side effects, so many lessons learned, so many turn-arounds, miracles and medical wonders......clinging to a pitifully small number of eyelashes who are hanging in there despite all the drugs. Tiny little soldiers lined up in the relentless rain of unchecked tears. The metaphor seems to sad to even write about.
So as I sit here today, the 23rd of March 2009....one week before my daughter's 22nd birthday,
3 weeks before my husband's 54th and 6 short weeks before my daughter's college graduation,
I feel foolish for the importance I have given to those eyelashes. I should feel nothing but gratitude and love and faith. When it comes to clinging, I know I should be clinging to big things, really important things...the one BIG thing. Like the Psalmist David wrote from the desert:
"Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me." Psalm 63:7-8
Again, I just need to remember. Remember that when I am clinging to the small things out of
vanity or stubbornness or fear, I need to let go and cling only to the Lord. And I need to sing in the shadows.
The doses are slightly stronger...but mainly my body is getting tired of all the chemo. All the drugs...so many rounds of drugs. I have stopped counting. And now I have a brand new side effect that I had been complaining about for weeks. I told Janet, now I told Maha. My eyes will not stop watering. It is such a small thing but so irritating. Imagine what it is like to look through your tears about fifty percent of the time. I am constantly wiping, dabbing and blinking.
Maha told me it is a side effect of Taxotere.....(wow, really???I had no idea)... but it could also be that because I had no eyelashes that dirt and dust was........"No!" I stopped her right there. I HAVE EYELASHES! They are just so wet and clumped together you can't see them. But if I put on mascara, they are there!!
She just nodded and I felt stupid, becuase I am clinging to my eyelashes. I am also clinging to my eyebrows. I am losing the hair on my head with a slow and determined shed. I have had my head buzzed to 1-inch all around to keep it from hurting so much. I have a re-styled wig ready to go......but I am clinging to the fact that I will keep my eyelashes and eyebrows. I know it is impossible to fool anyone with even the best wig if you don't have eyelashes and eyebrows. They are a small yet strong source of vanity for me. Keep them and I can look healthy to those who don't know me. Eye make-up stays in place; wig-bangs can be brushed aside without the fear of revealing no brows. Here I am, after so many years, so many side effects, so many lessons learned, so many turn-arounds, miracles and medical wonders......clinging to a pitifully small number of eyelashes who are hanging in there despite all the drugs. Tiny little soldiers lined up in the relentless rain of unchecked tears. The metaphor seems to sad to even write about.
So as I sit here today, the 23rd of March 2009....one week before my daughter's 22nd birthday,
3 weeks before my husband's 54th and 6 short weeks before my daughter's college graduation,
I feel foolish for the importance I have given to those eyelashes. I should feel nothing but gratitude and love and faith. When it comes to clinging, I know I should be clinging to big things, really important things...the one BIG thing. Like the Psalmist David wrote from the desert:
"Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me." Psalm 63:7-8
Again, I just need to remember. Remember that when I am clinging to the small things out of
vanity or stubbornness or fear, I need to let go and cling only to the Lord. And I need to sing in the shadows.
Thursday, March 19, 2009
This Mountain of Sickness
What a description. I do a lot of "sporadic" reading. I have books, pamphlets, and journals where I pick up nuggets of inspiration, ideas, hope, direction, and prayers. I have rarely completed an entire book on healing or blessings or living strong and long. But I have certainly gleaned so much from these books. Their little sayings, attitudes, mantras and prayers are what help me start and get through each day. I have learned that God will usually make something leap off a page and hit me between the eyes that is so relative, so exactly what I need for that day, and it is so perfect that it can only be His words for me.
In a little devotional book on healing by Joe McIntyre, I found two sentences that I cannot let go of. They are my latest song, my latest chant, my latest prayer. McIntyre takes healing scriptures from the Bible, then gives you a daily prayer to say that goes along with the scripture.
In expanding on Proverbs 12:18, the author gives a long prayer to use on speaking health to yourself. I do this quite often, but two sentences in his prayer have stayed with me for over a month, so I thought it might be time to share. They go like this:
"The mountain of sickness is being removed and cast into the sea. It is being plucked up by the roots and thrown out of my life."
Notice how the author takes such a large thing (mountain) a reduces it in your mind to something small enough to be "plucked by the roots"....like a weed?
Cancer is so like this metaphor. Sometimes the disease appears on my horizon as a huge mountain. A mountain of fear. A mountain of pain. A mountain of treatments, tests, and uncertainties. A mountain so large and looming that there are days I have to turn away from it.
Crawl away from its shadow....hide from its enormity.
But if I follow through onto the next sentence and think of the mountain being plucked away like weed from a garden and thrown out of my life, it is so much easier to face. Bit by bit, weed by weed, no matter what your circumstance or diagnosis, aspects of cancer can be plucked up and thrown into the sea. Like your garden in the summer, you have to be ever-vigilant to keep up with the weeds. You have to pull at them everyday. If you don't, the weeds take over....the mountain looms....the enemy advances. But if you can just think of plucking the weeds for the day and throwing them away, you can weed out the fear for the day, the pain, the advancement, the uncertainty....for that one day.
So get out there people and pluck away....a little each day. Then the mountain of sickness won't be such a looming giant. Weed your garden, visualize the base of the mountain being chipped away....every day. Stand in the sun and ask God to help you rid yourself of the weeds. Speak it, pray it, sing it, chant it. He will hear you. He has on His gloves and will help you pluck. He will.
He has to. For He alone is the Master Gardener. And he is much much greater than our mountain of sickness.
"...but the tongue of the wise promotes health." Proverbs 12:18
In a little devotional book on healing by Joe McIntyre, I found two sentences that I cannot let go of. They are my latest song, my latest chant, my latest prayer. McIntyre takes healing scriptures from the Bible, then gives you a daily prayer to say that goes along with the scripture.
In expanding on Proverbs 12:18, the author gives a long prayer to use on speaking health to yourself. I do this quite often, but two sentences in his prayer have stayed with me for over a month, so I thought it might be time to share. They go like this:
"The mountain of sickness is being removed and cast into the sea. It is being plucked up by the roots and thrown out of my life."
Notice how the author takes such a large thing (mountain) a reduces it in your mind to something small enough to be "plucked by the roots"....like a weed?
Cancer is so like this metaphor. Sometimes the disease appears on my horizon as a huge mountain. A mountain of fear. A mountain of pain. A mountain of treatments, tests, and uncertainties. A mountain so large and looming that there are days I have to turn away from it.
Crawl away from its shadow....hide from its enormity.
But if I follow through onto the next sentence and think of the mountain being plucked away like weed from a garden and thrown out of my life, it is so much easier to face. Bit by bit, weed by weed, no matter what your circumstance or diagnosis, aspects of cancer can be plucked up and thrown into the sea. Like your garden in the summer, you have to be ever-vigilant to keep up with the weeds. You have to pull at them everyday. If you don't, the weeds take over....the mountain looms....the enemy advances. But if you can just think of plucking the weeds for the day and throwing them away, you can weed out the fear for the day, the pain, the advancement, the uncertainty....for that one day.
So get out there people and pluck away....a little each day. Then the mountain of sickness won't be such a looming giant. Weed your garden, visualize the base of the mountain being chipped away....every day. Stand in the sun and ask God to help you rid yourself of the weeds. Speak it, pray it, sing it, chant it. He will hear you. He has on His gloves and will help you pluck. He will.
He has to. For He alone is the Master Gardener. And he is much much greater than our mountain of sickness.
"...but the tongue of the wise promotes health." Proverbs 12:18
Thursday, March 5, 2009
She didn't make it to church
6:41 pm. That's what time the call from Janet came across last night. I saw the number on my caller ID. I felt it must be good news, important news for me to hear. She must have known that I did not want to spend another night waiting for blood results. She must have known if she did not call me on Wednesday, I would think that the news was bad......despair and disappointment would be waiting for me on Thursday.
So even though she wanted to make it to church, she sat down to a pile of e-mails and paperwork and found my reports and called me. Liver functions normal....tumor marker down 300 points.....regimen working.....runaway cells in retreat. We had been calling my condition what we wanted, if you remember. Standing on the scripture about Abraham's faith and "calling things that are not as though they were." We had gotten what we called for. God was listening.
Remarkable, really, that she would take the time at the end of the day to sort through all that information and bring relief, joy and peace to my evening. I know she didn't make it to church,
but I had a little church right in my living room because of that call. I don't think God minds that she worked her way past Wednesday night services. He knows her well. He knows her heart.
He knew she would make the choice to deliver the news of hope to me and miss some time in His house. And he knows I thank Him every day that she has the heart to make that call.
"You hear, O Lord the desire of the afflicted: you encourage them, and you listen to their cry."
Psalm 10:17
So even though she wanted to make it to church, she sat down to a pile of e-mails and paperwork and found my reports and called me. Liver functions normal....tumor marker down 300 points.....regimen working.....runaway cells in retreat. We had been calling my condition what we wanted, if you remember. Standing on the scripture about Abraham's faith and "calling things that are not as though they were." We had gotten what we called for. God was listening.
Remarkable, really, that she would take the time at the end of the day to sort through all that information and bring relief, joy and peace to my evening. I know she didn't make it to church,
but I had a little church right in my living room because of that call. I don't think God minds that she worked her way past Wednesday night services. He knows her well. He knows her heart.
He knew she would make the choice to deliver the news of hope to me and miss some time in His house. And he knows I thank Him every day that she has the heart to make that call.
"You hear, O Lord the desire of the afflicted: you encourage them, and you listen to their cry."
Psalm 10:17
Wednesday, March 4, 2009
Knowing
Sorry, guys. I've been away from the computer for a while. I had just had enough of the intensity that this battle brings to my life and needed to not wake up and think of it so often.
I needed to hibernate for the winter. I needed a little time under the covers and away from the constant talk of treatments, developments, and numbers......always the numbers. I was sick of the side effects, sick of peeling finger tips, mouth sores, no appetite, and bad days.
As I was making the drive to Cary yesterday morning after a rough start of slipping on the ice and dumping the entire contents of my purse out into the snow.....yes, snow in March...., I started thinking that maybe I had been buried away long enough and it was time, even with the snow on the ground, to come out and start writing again. Renew myself. Be a yellow bloom of spring. Talk again about life and living and hope and fighting and winning battles, no matter how small.
I thought about several topics. Like what winter does to us as humans. How the short days and lack of anticipation toward anything other than Valentine's Day for three months, and the cold and decreased activity can really bring you down. Or how taking breaks from chemo, writing and talking about cancer is something everyone needs, if only for a few weeks, to recharge and re-focus. I finally decided to follow-up on something I had written about last year.
It really has to be the reason why I sometimes need a break. The reason why I will, on some days look at Janet, and shrug my shoulder and say, "oh well, it is what it is." The reason why I go under to covers, refuse to touch base with my friends, become nasty with my husband.
It's because there are times when the struggle and the questions and the feelings of foresakeness, the Living with the Knowing (see post from July 27, 2008) just overtake me and I have to give myself permission to be sad and angry and discouraged and disgusted and fed-up
and worn-out. If only for a day...but sometimes for a week or two.
Living with the Knowing is the distinct condition that those who have chronic cancer,....StageIV...
inoperable.....untreatable...terminal......whatever you want to call it, have to experience every day we wake up and live our lives. It is the fact that we know that something within us is determined to and more than likely will cut our lives short. Sometimes, the knowing is a good thing, because it keeps you focused on life, appreciative of what you have, thankful for your loved ones, glad to be here for one more milestone, one more birthday, one more graduation, funeral or wedding. But sometimes the knowing gets too hard to bear, to sad the think about,
too heavy a burden. That is when I need to hibernate...not write, not research, not discuss, not care....only pray.
As I was thinking of all this while driving down I-40...where most of my good thoughts come to me...I was thinking about the ad I had seen for a new movie. It is called Knowing. It stars Nicholas Cage. His son finds a scroll in a time capsule at his school. The scroll is in code and, of course, Mr. Cage's character cracks the code. He realizes that the scroll contains all the dates of and accurately predicts every major disaster that has hit the earth since the earth began. He also realizes that the BIG ONE, the end-of-the world type disaster is drawing very near. In the movie teaser, they show Nicholas Cage's face in one shot and it truly captures the burden of living with knowing that life is probably ending much sooner than he'd planned. Even though he is acting, he had gotten that look down pat. It's a heavy, heavy load sometimes, just knowing.
Then I began to think about someone who really knew what it was like to live with knowing that life would end early. This guy lived a perfect, sinless life, full of meaning and compassion,
teachings and miracles. The most faithful man ever, knew from a very early age that his path would take him down a rocky road from joy and love and worship to beatings and a trial and
a cross. He knew and he was afraid, just like us. He knew and asked his Father to "take this cup from me" (don't make me do this) He did all those wonderful things, taught us all how to live, became the light of the world, all the time knowing he would die a horrible death before going home to his Father. He once again, in circumstance that we who live with knowing experience all the time, walked before us with dignity, integrity, flawlessness, kindness, and most of all with love.
So when you are walking on your path of life with cancer and the burden is heavy. When you get like me and want to hang your head, give up, hibernate, make it stop, jump off the path and run away and never come back. Look ahead of you. Look ahead of you on the path and you will see a man in a loin cloth, carrying a heavy cross, on his way to a hilltop where they will nail his hands and his feet to the cross he is carrying on his back. They will pierce his side with their swords. He will suffer beyond anything you or I will ever know. And He did this for us, so we, that have to live with knowing, will never, ever, ever have to feel alone.
He alone knows better than anyone. He alone knows.
"Why are you cast down, O my soul? And why are you so disquieted within me? Hope in God; For I will yet praise Him. My Savior and my God." Psalm 42:11
I needed to hibernate for the winter. I needed a little time under the covers and away from the constant talk of treatments, developments, and numbers......always the numbers. I was sick of the side effects, sick of peeling finger tips, mouth sores, no appetite, and bad days.
As I was making the drive to Cary yesterday morning after a rough start of slipping on the ice and dumping the entire contents of my purse out into the snow.....yes, snow in March...., I started thinking that maybe I had been buried away long enough and it was time, even with the snow on the ground, to come out and start writing again. Renew myself. Be a yellow bloom of spring. Talk again about life and living and hope and fighting and winning battles, no matter how small.
I thought about several topics. Like what winter does to us as humans. How the short days and lack of anticipation toward anything other than Valentine's Day for three months, and the cold and decreased activity can really bring you down. Or how taking breaks from chemo, writing and talking about cancer is something everyone needs, if only for a few weeks, to recharge and re-focus. I finally decided to follow-up on something I had written about last year.
It really has to be the reason why I sometimes need a break. The reason why I will, on some days look at Janet, and shrug my shoulder and say, "oh well, it is what it is." The reason why I go under to covers, refuse to touch base with my friends, become nasty with my husband.
It's because there are times when the struggle and the questions and the feelings of foresakeness, the Living with the Knowing (see post from July 27, 2008) just overtake me and I have to give myself permission to be sad and angry and discouraged and disgusted and fed-up
and worn-out. If only for a day...but sometimes for a week or two.
Living with the Knowing is the distinct condition that those who have chronic cancer,....StageIV...
inoperable.....untreatable...terminal......whatever you want to call it, have to experience every day we wake up and live our lives. It is the fact that we know that something within us is determined to and more than likely will cut our lives short. Sometimes, the knowing is a good thing, because it keeps you focused on life, appreciative of what you have, thankful for your loved ones, glad to be here for one more milestone, one more birthday, one more graduation, funeral or wedding. But sometimes the knowing gets too hard to bear, to sad the think about,
too heavy a burden. That is when I need to hibernate...not write, not research, not discuss, not care....only pray.
As I was thinking of all this while driving down I-40...where most of my good thoughts come to me...I was thinking about the ad I had seen for a new movie. It is called Knowing. It stars Nicholas Cage. His son finds a scroll in a time capsule at his school. The scroll is in code and, of course, Mr. Cage's character cracks the code. He realizes that the scroll contains all the dates of and accurately predicts every major disaster that has hit the earth since the earth began. He also realizes that the BIG ONE, the end-of-the world type disaster is drawing very near. In the movie teaser, they show Nicholas Cage's face in one shot and it truly captures the burden of living with knowing that life is probably ending much sooner than he'd planned. Even though he is acting, he had gotten that look down pat. It's a heavy, heavy load sometimes, just knowing.
Then I began to think about someone who really knew what it was like to live with knowing that life would end early. This guy lived a perfect, sinless life, full of meaning and compassion,
teachings and miracles. The most faithful man ever, knew from a very early age that his path would take him down a rocky road from joy and love and worship to beatings and a trial and
a cross. He knew and he was afraid, just like us. He knew and asked his Father to "take this cup from me" (don't make me do this) He did all those wonderful things, taught us all how to live, became the light of the world, all the time knowing he would die a horrible death before going home to his Father. He once again, in circumstance that we who live with knowing experience all the time, walked before us with dignity, integrity, flawlessness, kindness, and most of all with love.
So when you are walking on your path of life with cancer and the burden is heavy. When you get like me and want to hang your head, give up, hibernate, make it stop, jump off the path and run away and never come back. Look ahead of you. Look ahead of you on the path and you will see a man in a loin cloth, carrying a heavy cross, on his way to a hilltop where they will nail his hands and his feet to the cross he is carrying on his back. They will pierce his side with their swords. He will suffer beyond anything you or I will ever know. And He did this for us, so we, that have to live with knowing, will never, ever, ever have to feel alone.
He alone knows better than anyone. He alone knows.
"Why are you cast down, O my soul? And why are you so disquieted within me? Hope in God; For I will yet praise Him. My Savior and my God." Psalm 42:11
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