"What is your name?", the stranger at church asked me. This middle-aged man who had come before me and layed his hand on me just minutes before to pray for me. I had been called to the front, moved by God, hearing His voice as the worship leader had called for all the dreamers to come forward. An invitation to those who still dared to dream despite those dreams not coming true....yet. An invitation for those who were still looking for God to fulfill the dreams of their life.
An invitation that I could not turn down.
As the dreamers all stood at the front of the church, waiting with heads bowed, waiting for prayers from ministers and elders and whomever felt like praying for us, I was already blown away by the invitation to begin with. For my dreams were becoming my enemy. They haunt me at night and wake me up too early in the morning. They are strange and non-specific. They are about people I know but in bizarre places and circumstances. They represent struggling and stress and distrust of my body. The dreams of my sleep project the uncertainty of my life. Under treatment again, I feel that I have fallen off the path and dream that I am lost in a maze of confusion and worry. My sleeping dreams are no where near what my real dreams are. My dreams of freedom and healing and rest and lack of worry; the wind and the water, seas and sunsets, weddings and babies, retirement and everyone released from the tension and drama of this cancer-ridden life.......those dreams are my waking dreams, my praying dreams.....the subject of my focus for the fight. My waking dreams are my hope and I am waiting, always waiting for them to come true.
So to be called to the front of the church as a dreamer was such a God moment already. Then the stranger moved up to me, put his hand on my shoulder and prayed for me. I can't remember what his exact words were the first time he was with me, but they were comforting. He walked away from me for a good five minutes before he returned and asked me my name.
"Kathy." I said. And then, through this man I still do not know, God spoke loud and clear.
I cannot quote the man directly because after his first sentence was out of his mouth, I was a blubbering wreck. Weeping and trying to listen to his words because I knew without a doubt that God was speaking through this stranger. He told me that God wanted me to know that I had a special place in His heart. That God knew I was broken-hearted right now and that He,
God was broken-hearted with me. And that God also wanted me to know that it was all going to be okay. That He was with me, always, and He loved me beyond measure. Suddenly, there was no one in that church but me, the stranger and the Lord. I heard God this time, break His silence of the past month or so, acknowledging my disappointment and weariness, and reaching out to me through a comforting hand of a nameless man on a Sunday morning.
Suddenly I could let go of the questioning. I could let go of trying to figure out where I was going with the direction of my fight. Suddenly I was back on the path and the path was still rocky, but it was straight. Suddenly, the dreams during the night meant nothing....the struggling in my head was ending. The dreams of my days are the dreams of my reality. The dreams during the waking hours are the dreams that will come true. They will happen. I have to believe and be patient. And just when the sleeping dreams threatened to cover my real dreams with a blanket of doubt, disease, and darkness, God spoke to me through a stranger to let me know that nothing is lost...no dream, no hope, no future....nothing is lost. It is all right before me, ever-growing on my horizon like a beautiful sunrise.
"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
Tuesday, October 28, 2008
Saturday, October 25, 2008
The Year
"For I know the plans I have for you," says the Lord. "Plans for good and not for evil, to give you a future and a hope." Jeremiah 29:11
This scripture sits on my dresser at home. Given to me last Christmas by my sister-in-law, Jackie, for my birthday on December 15, 2008. I received it during a time when I was not sure about that future. I had started on Ixempra in hopes of stopping a potentially future-ending progression of the enemy. All we knew is that on October 31, 2007.....one year from this coming Friday.....scans had been run and my doctor had had to call me with very, very bad news. There was no place for the cancer to go that it had not made it to. I had BB shots of metastatic disease in all four major sites of recurrence. It was quite devastating.
It was around that time that I started putting my journal on this blog site. It was around that time that I wondered what the holidays would be like...knowing this new development....knowing what the scans said and the tumor marker levels were. It was around that time that I met with Maha and Janet and learned of the new drug.....the new hope for me. And by the time I got the framed scripture, even though we knew nothing of what success lay ahead, I believed in what the Lord had promised me in Jeremiah. I had felt all along, even after that bad, bad phone call,
that He still had plans for me. Turns out I was right.
In the year that has followed, I cannot possibly list all of the divine and spiritual things that have happened to me. This blog site documents some of the highlights, but cannot possibly convey
how God has woven such a beautiful fabric out of the threads of my life with cancer and all of the people who surround me in this fight....this destiny. The love, support, revelations, declarations,
and prayer....so much prayer.....can never be measured.
Maha and I talked briefly about this on my latest visit with her. What a year it has been, we both acknowledged. What a very different path we have walked than the one we first prepared ourselves for back on November 1, 2007. God did have plans for me, for all of us....a future and a hope. I now find myself a volunteer, a comforter and example for others in the fight. I always knew God would use me in some way to offer care, compassion, and empathy, I just never imagined that I had to stare at the end of my rope, turn my back on the facts, step out in faith and know that some how, one year later, I would be living life even fuller than before.
What a year it has been. Makes you wonder what the next year will be like. God has blessed me with the knowledge that I will have the chance to live it and I cannot put into words my gratitude. Nor could I possibly say all I want to say to the people who lived this year with me.
You know who you are. You encouraged me, prayed for me, treated me, loved me, supported me, comforted me...believed in me. You all saved me. All of you and my ever-faithful God worked in perfect, life-giving harmony to ensure my survival for another year.
I ask you all....are you ready for another great year? I am. I am far from done here. We have work to do. We know it won't be easy....but I guarantee you one thing: it will be fun, inspiring, emotional, spiritual and divinely woven...just like the past twelve months. So let's take a breath and get ready. Another year of life is waiting...maybe two or three or fourteen. Let me just say here, before I forget and even though it is not going to fully express what I feel, thank you all, oh so very much, for living my life with me. You and the Lord, giving me plans for the future.
This scripture sits on my dresser at home. Given to me last Christmas by my sister-in-law, Jackie, for my birthday on December 15, 2008. I received it during a time when I was not sure about that future. I had started on Ixempra in hopes of stopping a potentially future-ending progression of the enemy. All we knew is that on October 31, 2007.....one year from this coming Friday.....scans had been run and my doctor had had to call me with very, very bad news. There was no place for the cancer to go that it had not made it to. I had BB shots of metastatic disease in all four major sites of recurrence. It was quite devastating.
It was around that time that I started putting my journal on this blog site. It was around that time that I wondered what the holidays would be like...knowing this new development....knowing what the scans said and the tumor marker levels were. It was around that time that I met with Maha and Janet and learned of the new drug.....the new hope for me. And by the time I got the framed scripture, even though we knew nothing of what success lay ahead, I believed in what the Lord had promised me in Jeremiah. I had felt all along, even after that bad, bad phone call,
that He still had plans for me. Turns out I was right.
In the year that has followed, I cannot possibly list all of the divine and spiritual things that have happened to me. This blog site documents some of the highlights, but cannot possibly convey
how God has woven such a beautiful fabric out of the threads of my life with cancer and all of the people who surround me in this fight....this destiny. The love, support, revelations, declarations,
and prayer....so much prayer.....can never be measured.
Maha and I talked briefly about this on my latest visit with her. What a year it has been, we both acknowledged. What a very different path we have walked than the one we first prepared ourselves for back on November 1, 2007. God did have plans for me, for all of us....a future and a hope. I now find myself a volunteer, a comforter and example for others in the fight. I always knew God would use me in some way to offer care, compassion, and empathy, I just never imagined that I had to stare at the end of my rope, turn my back on the facts, step out in faith and know that some how, one year later, I would be living life even fuller than before.
What a year it has been. Makes you wonder what the next year will be like. God has blessed me with the knowledge that I will have the chance to live it and I cannot put into words my gratitude. Nor could I possibly say all I want to say to the people who lived this year with me.
You know who you are. You encouraged me, prayed for me, treated me, loved me, supported me, comforted me...believed in me. You all saved me. All of you and my ever-faithful God worked in perfect, life-giving harmony to ensure my survival for another year.
I ask you all....are you ready for another great year? I am. I am far from done here. We have work to do. We know it won't be easy....but I guarantee you one thing: it will be fun, inspiring, emotional, spiritual and divinely woven...just like the past twelve months. So let's take a breath and get ready. Another year of life is waiting...maybe two or three or fourteen. Let me just say here, before I forget and even though it is not going to fully express what I feel, thank you all, oh so very much, for living my life with me. You and the Lord, giving me plans for the future.
Friday, October 17, 2008
Park it in the corner.
I have waited over a week to write anything in my journal about the CCNC support group that met, no,no....it happened last Wednesday night. It was an open forum. It was the patients' and caregivers' chance to ask the oncologist any question....any concern. It was Maha who was up for the answering. I knew it would be good. I knew it would be intense. And I took my 21-year old, self-absorbed in her own life, daughter to let her get a true sense of what people deal with on a daily level when they are fighting the beast. When she thinks her life is in the tank, I wanted her to remember the group that gathered for this meeting and realize just how lucky she is...how insignificant her social drama can be. And I wanted her to watch Maha in action. I wanted her to know why I had put such absolute trust in this woman for the past almost eight years of my life. I got what I wanted and way, way more.
First of all, they kept having to bring in chairs because of the number of people who showed up.
Then, right before things got started, they wheeled in a patient, down from their hospital room, family and friends in tow. A newly diagnosed. A frightening and aggressive cancer. The fear, anger, and disbelief so fresh so tangible. All the rest of us knew what they felt like.....they were coming in to question why.....to try to find a reason...to try to blame somebody or something for this catastrophe. The were overly distraught, exhausted, and heartbroken. They wanted to know how to deal with their anger.
And in the midst of this emotional maelstrom brewing all around her sat Maha. The voice of intellect, calm and reason. When she spoke to their questions, she turned to the family and the rest of the room fell away. She looked right at them all and said so many true and great things, I doubt I can remember them all. The same kinds of things she said to me on June 1, 2001 during our first appointment. Like, (loosely quoted, of course)
We couldn't change the fact of what has happened. That is finite.
Fighting cancer is a marathon, not a sprint. If you insist on making it a sprint you will absolutely wear yourself out.
To the caregiver; you need to take care of yourself or you will be no good to no one.
There have been great strides in the treatment of your type of cancer, so there is hope. You have to have hope.
And the two most profound things said at that time, that moment when she had engaged the small group in the corner and the rest of us became observers of a remarkable event I have thought of this way: one statement for the family and one statement for the rest of us.
The statement to the family who sat before her with anger rolling off them like a tropical depression comes off the coast of Africa was: You need to take your anger...all that negative emotion...and park it in the corner. Put it away. It's not doing you any good. You cannot move forward through this as long as you are looking back.
The statement for the rest of us was about fear. The fear that each of us deals with and fights so hard to squelch on a daily basis because of our disease. She told us all that she has fear, too.
Every time she starts a new treatment on a patient she is fearful that it might not work. Wow.
Me too, Maha, me too. I realized that I have probably scared her a lot in our relationship. It was such a humbling "aha" moment for me that through all the things she and I have gone through, she even shares my fear.
As the days have gone by and Katie, Jan, Rebecca and others have re-hashed that night during the support group with me, by far, just about everyone talks about and will remember Maha engaging that family in an intimate and reassuring conversation about what to do with anger. That "park it in the corner" phrase is bound to be quoted and re-quoted by us all. It was great stuff.
Katie now knows what an amazing woman my oncologist is. The quiet confidence exhibited by her during that Wednesday night gives Katie confidence that I will be well taken care of and that Maha is a huge part of the reason that I continue to believe that I can live a long and full life. She will not soon, if ever, forget all she witnessed there.
As for me, I have been mostly touched and changed by her statement on fear. For almost eight years, fear has been the hardest thing for me to deal with. Fear can be paralyzing, crippling and crushing. It can change your outlook, your faith, your personality and your health. Fear is like a creeping, multi-legged insect that can cover your brain and blur your focus. There are times, days at a time, where I am constantly fighting the fear, trying to stand tall, trying to stay faithful and focused and full of hope. To know that my physician knows my fear, shares my fear, is even willing to confess my same fears means more to me than anything else she could have said on that Wednesday night. We all want to know that someone understands what we are going through. And that one revelation about fear got me thinking that if Maha has it for her patients,
so must all my girls. Janet and Jennifer and Jan and Gail and Lynn and Rebecca. They must all feel a certain amount of fear for me when I need to start something new to try and keep the beast in check. OMG I had no idea. And I know why I had no idea......because they all have an
incredible ability to park it in the corner. Fear, like anger, is negative and will get you nowhere.
My team knows that in order to treat me as well and successfully as they do, they will have to park quite a few things in the corner and set about the business of moving forward to better results, better numbers, better treatments......my better life.
"The fear of man will prove to be a snare, but whoever trusts in the Lord is kept safe." Proverbs 29:25
First of all, they kept having to bring in chairs because of the number of people who showed up.
Then, right before things got started, they wheeled in a patient, down from their hospital room, family and friends in tow. A newly diagnosed. A frightening and aggressive cancer. The fear, anger, and disbelief so fresh so tangible. All the rest of us knew what they felt like.....they were coming in to question why.....to try to find a reason...to try to blame somebody or something for this catastrophe. The were overly distraught, exhausted, and heartbroken. They wanted to know how to deal with their anger.
And in the midst of this emotional maelstrom brewing all around her sat Maha. The voice of intellect, calm and reason. When she spoke to their questions, she turned to the family and the rest of the room fell away. She looked right at them all and said so many true and great things, I doubt I can remember them all. The same kinds of things she said to me on June 1, 2001 during our first appointment. Like, (loosely quoted, of course)
We couldn't change the fact of what has happened. That is finite.
Fighting cancer is a marathon, not a sprint. If you insist on making it a sprint you will absolutely wear yourself out.
To the caregiver; you need to take care of yourself or you will be no good to no one.
There have been great strides in the treatment of your type of cancer, so there is hope. You have to have hope.
And the two most profound things said at that time, that moment when she had engaged the small group in the corner and the rest of us became observers of a remarkable event I have thought of this way: one statement for the family and one statement for the rest of us.
The statement to the family who sat before her with anger rolling off them like a tropical depression comes off the coast of Africa was: You need to take your anger...all that negative emotion...and park it in the corner. Put it away. It's not doing you any good. You cannot move forward through this as long as you are looking back.
The statement for the rest of us was about fear. The fear that each of us deals with and fights so hard to squelch on a daily basis because of our disease. She told us all that she has fear, too.
Every time she starts a new treatment on a patient she is fearful that it might not work. Wow.
Me too, Maha, me too. I realized that I have probably scared her a lot in our relationship. It was such a humbling "aha" moment for me that through all the things she and I have gone through, she even shares my fear.
As the days have gone by and Katie, Jan, Rebecca and others have re-hashed that night during the support group with me, by far, just about everyone talks about and will remember Maha engaging that family in an intimate and reassuring conversation about what to do with anger. That "park it in the corner" phrase is bound to be quoted and re-quoted by us all. It was great stuff.
Katie now knows what an amazing woman my oncologist is. The quiet confidence exhibited by her during that Wednesday night gives Katie confidence that I will be well taken care of and that Maha is a huge part of the reason that I continue to believe that I can live a long and full life. She will not soon, if ever, forget all she witnessed there.
As for me, I have been mostly touched and changed by her statement on fear. For almost eight years, fear has been the hardest thing for me to deal with. Fear can be paralyzing, crippling and crushing. It can change your outlook, your faith, your personality and your health. Fear is like a creeping, multi-legged insect that can cover your brain and blur your focus. There are times, days at a time, where I am constantly fighting the fear, trying to stand tall, trying to stay faithful and focused and full of hope. To know that my physician knows my fear, shares my fear, is even willing to confess my same fears means more to me than anything else she could have said on that Wednesday night. We all want to know that someone understands what we are going through. And that one revelation about fear got me thinking that if Maha has it for her patients,
so must all my girls. Janet and Jennifer and Jan and Gail and Lynn and Rebecca. They must all feel a certain amount of fear for me when I need to start something new to try and keep the beast in check. OMG I had no idea. And I know why I had no idea......because they all have an
incredible ability to park it in the corner. Fear, like anger, is negative and will get you nowhere.
My team knows that in order to treat me as well and successfully as they do, they will have to park quite a few things in the corner and set about the business of moving forward to better results, better numbers, better treatments......my better life.
"The fear of man will prove to be a snare, but whoever trusts in the Lord is kept safe." Proverbs 29:25
Thursday, October 16, 2008
The Group
"Gosh", I said to Jennifer. "I'm gonna have to stay down at this end of the room because those three women are talking continually. It's like white refrigerator noise. It's driving me crazy." (It was my volunteer/patient day at CCNC.) She cut those baby-blues at me and said with a snicker, "And this, coming from you????
She then reminded me of our old chemo group. It was three to five of us girls who happened to sit down at one end of the treatment room. We were all outgoing, talkative, and at times, loud.
Always laughing, having fun and making other patients avoid us like the plague because of it.
No one slept down in our corner. Rarely did any of us have a bad day once we had spent it with each other. I look back on that group and think about where we have all gone, what we are all doing, HOW we are all doing. Dawn, Barb, Sue, Paulette and myself spent one season of summer/fall all together at the far end of the chemo room. Being our own little support system....sisters in the fight. Breast, ovarian, colon...Stage IVs the whole lot. It is pretty amazing to think that we found each other under the worst of circumstances. Dawn, Sue, and I were carry-overs from the old office location. Living our lives straight past the percentage predictions of our circumstance. We are all three approaching our 5-year anniversary of living
with what was supposed to have killed us.
The group is no longer intact. We lost Paulette, a soldier who entered her fight way too late in the game but laughed along with us until she was sent home with nothing more to be done. Barb has not had to come back.....and I hope it stays that way for many more years to come. Sue, Dawn, and I have all had breaks over the past six months, but we each know how the other is doing. Dawn is off to have some surgery...ever aggressive...always attacking her enemy. Sue is opening up a bike shop with her daughter, and me...well you know what I've been up to....living life as large as I can.
If you take a good look at us.....Dawn and Sue and I.....battling the hard way since the winter of 2004....it is remarkable that all three of us; one in their thirties, one in their fifties, one in their sixties; all three of us Stage IVers are still alive and kicking and screaming against the enemy. A true testament to our great healers, both human and divine.
So the next time there are a group of women cackling continuously in the corner of a medical treatment area, you just might not want to avoid them. They could have the secret.....they could know the skinny....their ability to cause such a commotion every time they are together could be just what the doctor ordered. I believe those times together, laughing and supporting each other is definitely a piece of the puzzle...faith, medicine, family, friends and finding people like you.....that fit together and give you a longer fuller life, even when the enemy is ever-circling the group of LOUD and happy soldiers.
"A cheerfull heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22
She then reminded me of our old chemo group. It was three to five of us girls who happened to sit down at one end of the treatment room. We were all outgoing, talkative, and at times, loud.
Always laughing, having fun and making other patients avoid us like the plague because of it.
No one slept down in our corner. Rarely did any of us have a bad day once we had spent it with each other. I look back on that group and think about where we have all gone, what we are all doing, HOW we are all doing. Dawn, Barb, Sue, Paulette and myself spent one season of summer/fall all together at the far end of the chemo room. Being our own little support system....sisters in the fight. Breast, ovarian, colon...Stage IVs the whole lot. It is pretty amazing to think that we found each other under the worst of circumstances. Dawn, Sue, and I were carry-overs from the old office location. Living our lives straight past the percentage predictions of our circumstance. We are all three approaching our 5-year anniversary of living
with what was supposed to have killed us.
The group is no longer intact. We lost Paulette, a soldier who entered her fight way too late in the game but laughed along with us until she was sent home with nothing more to be done. Barb has not had to come back.....and I hope it stays that way for many more years to come. Sue, Dawn, and I have all had breaks over the past six months, but we each know how the other is doing. Dawn is off to have some surgery...ever aggressive...always attacking her enemy. Sue is opening up a bike shop with her daughter, and me...well you know what I've been up to....living life as large as I can.
If you take a good look at us.....Dawn and Sue and I.....battling the hard way since the winter of 2004....it is remarkable that all three of us; one in their thirties, one in their fifties, one in their sixties; all three of us Stage IVers are still alive and kicking and screaming against the enemy. A true testament to our great healers, both human and divine.
So the next time there are a group of women cackling continuously in the corner of a medical treatment area, you just might not want to avoid them. They could have the secret.....they could know the skinny....their ability to cause such a commotion every time they are together could be just what the doctor ordered. I believe those times together, laughing and supporting each other is definitely a piece of the puzzle...faith, medicine, family, friends and finding people like you.....that fit together and give you a longer fuller life, even when the enemy is ever-circling the group of LOUD and happy soldiers.
"A cheerfull heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22
Monday, October 13, 2008
Too Much Life?
I had too much of my life crammed into last week. As I am sitting here, totally uninspired about what to say, I just start wandering back to last week. A week of too many "moments", too much drama, too many surprises...too much life.
Physically, it was not the best week for me. I am not tolerating my new combo of drugs as well as I'd hoped. The ever-present possibility of a sudden nausea ambush has begun to affect the way I approach each piece of food that goes in my mouth. I think also, that my old friend Avastin is causing my calves and sides to cramp....again at any given time. And then there is the new feeling of exhaustion......days of exhaustion....that comes on in the early afternoon and put me on my sofa much earlier that I would like. So each new day has become like a physical crap-shoot. I never know what the roll of the dice will bring.
Mentally, I have had to deal with another heartache for my daughter. If only I could transfer my life lessons into her directly. If only she knew how to stand alone and tall and strong in any situation. If only...and this is a double edge sword.....she could live without me for short periods of time when her life gets awful and she feels like she can't go it by herself. I do love feeling needed and don't get me wrong...I am SO-O-O glad that I am around to be her Mom and her supporter, but I am still looking for that sprouting of independence...HER faith...HER strength....HER confidence. Not me trying to give her mine.
We attended the CCNC support group together last Wednesday night, me hoping to give her some real perspective. It was such a raw and real place to be and it will be a whole entry in itself. The feelings and emotions that were shown there were more than most people are exposed to in their normal lives. Such an intense experience...so much to for her to learn...so much for us to discuss.
And then I ended up starting my girls' weekend beach trip with a trip to the emergency room. Hit by a fever of 102.4 in the wee hours of Friday morning, and already in Wilmington, Debbie had a small taste of how unpredictable living with someone in chronic cancer treatment can be. We spent three hours waiting, wondering, IV's running with antibiotics and saline. It turned out to be a urinary tract infection, but the possibilities of what it could have been were frightening. We prayed.....a lot. When we got the word that it was not low blood counts and an identifiable and easily treated UTI, we continued on to the beach anyway. I was determined not to let this small set-back get in our way. I cheated by drinking coffee each morning, but never did cheat by drinking wine. Not quite the "girls gone wild" (Ha! at our age) we had in mind. And it rained.....the entire time we were there.
On top of everything, I did not see my husband for five days. Schedules were not in sync......conferences and support groups to attend.....just too much life between us. Missing days we will not have back to spend together.
When I got back home from the beach trip yesterday, copies of Today's' Charlotte Woman were waiting for me. The article is out. My life before strangers, hopefully an inspiration. My husband and I both sat down in separate rooms to read it....both afraid to cry in front of the other...seeing it in writing in a magazine somehow making it more magnified.
My of my, where did all this life come from???? It seems a mess sometimes, out-of-control sometimes, not going the right way sometimes, hard to live sometimes. But it is still what it is.
It is my life and it is still wonderful. In between all the negative stuff crammed into last week,
there were still so many moments to remember, things to cherish, words to live by.
Time with Katie, seeing Maha touch her face, hugs and kisses, caring friends, walks on the beach, prayer, solace, relaxation, a haircut and color! So much life....but I now know after looking back, it will never, never be enough.
"This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live." Deut. 30:19
Physically, it was not the best week for me. I am not tolerating my new combo of drugs as well as I'd hoped. The ever-present possibility of a sudden nausea ambush has begun to affect the way I approach each piece of food that goes in my mouth. I think also, that my old friend Avastin is causing my calves and sides to cramp....again at any given time. And then there is the new feeling of exhaustion......days of exhaustion....that comes on in the early afternoon and put me on my sofa much earlier that I would like. So each new day has become like a physical crap-shoot. I never know what the roll of the dice will bring.
Mentally, I have had to deal with another heartache for my daughter. If only I could transfer my life lessons into her directly. If only she knew how to stand alone and tall and strong in any situation. If only...and this is a double edge sword.....she could live without me for short periods of time when her life gets awful and she feels like she can't go it by herself. I do love feeling needed and don't get me wrong...I am SO-O-O glad that I am around to be her Mom and her supporter, but I am still looking for that sprouting of independence...HER faith...HER strength....HER confidence. Not me trying to give her mine.
We attended the CCNC support group together last Wednesday night, me hoping to give her some real perspective. It was such a raw and real place to be and it will be a whole entry in itself. The feelings and emotions that were shown there were more than most people are exposed to in their normal lives. Such an intense experience...so much to for her to learn...so much for us to discuss.
And then I ended up starting my girls' weekend beach trip with a trip to the emergency room. Hit by a fever of 102.4 in the wee hours of Friday morning, and already in Wilmington, Debbie had a small taste of how unpredictable living with someone in chronic cancer treatment can be. We spent three hours waiting, wondering, IV's running with antibiotics and saline. It turned out to be a urinary tract infection, but the possibilities of what it could have been were frightening. We prayed.....a lot. When we got the word that it was not low blood counts and an identifiable and easily treated UTI, we continued on to the beach anyway. I was determined not to let this small set-back get in our way. I cheated by drinking coffee each morning, but never did cheat by drinking wine. Not quite the "girls gone wild" (Ha! at our age) we had in mind. And it rained.....the entire time we were there.
On top of everything, I did not see my husband for five days. Schedules were not in sync......conferences and support groups to attend.....just too much life between us. Missing days we will not have back to spend together.
When I got back home from the beach trip yesterday, copies of Today's' Charlotte Woman were waiting for me. The article is out. My life before strangers, hopefully an inspiration. My husband and I both sat down in separate rooms to read it....both afraid to cry in front of the other...seeing it in writing in a magazine somehow making it more magnified.
My of my, where did all this life come from???? It seems a mess sometimes, out-of-control sometimes, not going the right way sometimes, hard to live sometimes. But it is still what it is.
It is my life and it is still wonderful. In between all the negative stuff crammed into last week,
there were still so many moments to remember, things to cherish, words to live by.
Time with Katie, seeing Maha touch her face, hugs and kisses, caring friends, walks on the beach, prayer, solace, relaxation, a haircut and color! So much life....but I now know after looking back, it will never, never be enough.
"This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live." Deut. 30:19
Saturday, October 4, 2008
At least he went down swinging.
I lost a fellow soldier this week. On September 30th, my dear sister-in-law from South Carolina
suffered the loss of her brother, Jay's, partner. These two guys had been together for longer than most marriages. They had built a long, successful and pristine life together on the outskirts of Charlotte, and even though we had not seen a lot of each other over the past few years, they have always been part of the family and I know Jay had been keeping up with me and my progress over the last few years.
When my younger brother called two weeks ago to tell me that there was trouble, that Jay's partner was in the hospital, that is was some sort of acute lymphatic leukemia and, for a chance at survival, that they were going for high dose chemo and bone marrow transplant, I knew what terrible, terrible things they were all in for. You all know from reading my entry "The Touch" how truly, awfully sick one gets in the brutal process of marrow implantation. It is nothing but ugly. Whether it be from your own stem cells or a donor match, the high doses of chemotherapy are enough to kill you. And they did.
When I got the e-mail from my sister-in-law on Monday that he had lapsed into a coma and been put on life support and the family had been called in, I called Jay and left him a message.
Because I knew at that moment, he had to be re-thinking every decision the two of them had made together over the last month. He was probably regretting that they didn't just skip the treatments and give his partner whatever time he had left to die at home. So I left a voice mail for him to let him know this: at least he went down swinging.
For those of you who have been fortunate not to ever have to be faced with a cancer diagnosis,
to hear the awful words, to have to look at your life, cut short, on charts, scans and test results,
you will not be able to understand the significance of the end of the last paragraph. I feel, that no matter what you've been told, no matter how badly the deck is stacked against you and what the odds are, you have to fight. You have to do battle with the enemy. To try and fail is sad.
To not try at all and still get the same results, to me would be the worst thing of all. So as I left Jay the message, I said I was sorry for the terrible turn this was taking, but mostly I talked about how much I admired their courage. The courage to face the fire. The courage to stare at a terrifying beast and say, "I might only have a 5% chance of beating you, but that's better than no chance at all." The courage to be a soldier in the battlefield instead of a passivist hugging a tree.
For many, many reasons that I will not get into, the courage it took for Jay's partner to say "bring it on" and "we have to try" is phenomenal, monumental....supernatural.
He did not make it through the second round, his body giving up long before his spirit. He died Tuesday at 10:30 am. When I talk to Jay again, I will talk to him about regret. Not regret in the fact that they tried, but the awful regret that he, the survivor, would have to live with from here on out had they not. That overwhelming "what if" that would have come with taking the passive route and not the treatment decision. That constant looking back and wondering if perhaps his partner could have been in the 5% group. That maybe he would have been one to make it through and recover and live a few more months or years or who knows? I will tell him that living with the regret that they had chosen to do nothing but succumb would be so far more haunting that living with regret that his last days were physically miserable. You never, ever want to look back and think "we should have done more." It is so much better to say "we did everything we could."
So my message here today to anyone who has made these tough, sometimes unthinkable-in-scale decisions and ended up losing someone is to always, always honor the memory by honoring that decision....honor the courage......honor that faith. Don't regret it! There is so much more to be said for swinging at the ball and missing than standing there and watching the perfectly thrown pitch come at you and not swinging at all.
"I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7
suffered the loss of her brother, Jay's, partner. These two guys had been together for longer than most marriages. They had built a long, successful and pristine life together on the outskirts of Charlotte, and even though we had not seen a lot of each other over the past few years, they have always been part of the family and I know Jay had been keeping up with me and my progress over the last few years.
When my younger brother called two weeks ago to tell me that there was trouble, that Jay's partner was in the hospital, that is was some sort of acute lymphatic leukemia and, for a chance at survival, that they were going for high dose chemo and bone marrow transplant, I knew what terrible, terrible things they were all in for. You all know from reading my entry "The Touch" how truly, awfully sick one gets in the brutal process of marrow implantation. It is nothing but ugly. Whether it be from your own stem cells or a donor match, the high doses of chemotherapy are enough to kill you. And they did.
When I got the e-mail from my sister-in-law on Monday that he had lapsed into a coma and been put on life support and the family had been called in, I called Jay and left him a message.
Because I knew at that moment, he had to be re-thinking every decision the two of them had made together over the last month. He was probably regretting that they didn't just skip the treatments and give his partner whatever time he had left to die at home. So I left a voice mail for him to let him know this: at least he went down swinging.
For those of you who have been fortunate not to ever have to be faced with a cancer diagnosis,
to hear the awful words, to have to look at your life, cut short, on charts, scans and test results,
you will not be able to understand the significance of the end of the last paragraph. I feel, that no matter what you've been told, no matter how badly the deck is stacked against you and what the odds are, you have to fight. You have to do battle with the enemy. To try and fail is sad.
To not try at all and still get the same results, to me would be the worst thing of all. So as I left Jay the message, I said I was sorry for the terrible turn this was taking, but mostly I talked about how much I admired their courage. The courage to face the fire. The courage to stare at a terrifying beast and say, "I might only have a 5% chance of beating you, but that's better than no chance at all." The courage to be a soldier in the battlefield instead of a passivist hugging a tree.
For many, many reasons that I will not get into, the courage it took for Jay's partner to say "bring it on" and "we have to try" is phenomenal, monumental....supernatural.
He did not make it through the second round, his body giving up long before his spirit. He died Tuesday at 10:30 am. When I talk to Jay again, I will talk to him about regret. Not regret in the fact that they tried, but the awful regret that he, the survivor, would have to live with from here on out had they not. That overwhelming "what if" that would have come with taking the passive route and not the treatment decision. That constant looking back and wondering if perhaps his partner could have been in the 5% group. That maybe he would have been one to make it through and recover and live a few more months or years or who knows? I will tell him that living with the regret that they had chosen to do nothing but succumb would be so far more haunting that living with regret that his last days were physically miserable. You never, ever want to look back and think "we should have done more." It is so much better to say "we did everything we could."
So my message here today to anyone who has made these tough, sometimes unthinkable-in-scale decisions and ended up losing someone is to always, always honor the memory by honoring that decision....honor the courage......honor that faith. Don't regret it! There is so much more to be said for swinging at the ball and missing than standing there and watching the perfectly thrown pitch come at you and not swinging at all.
"I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7
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