My sister-in-law called me yesterday. The article for Today's Charlotte Woman is on it's way to the printer. "It's wonderful," she said. "There's just one thing that bothers me. They never mentioned your husband."
What?? Oh well. It is so like him to once again be a fixture in the background of my crazy cancer life. When I told Raul this, as always, it was not important to him. What remains important to him is that I continue to do well, feel well, feel purposeful, stay positive and live life.
Amazing, isn't it? A man, a very handsome man, who has weathered the storm with me for eight years. Never once wanting to step away. Never once has he wanted to give up. He has never lashed out, cried out, or let me sink into the depths of darkness of my disease. My husband is a little bit of God on earth. Put here to be a rock for me to stand on and that is no metaphor. He is my physical proof of God's solid ground on which I stand.
I often worry about the toll that being a silent and strong caretaker must take on him. He always thinks of me, my comfort, my condition. "How are you feeling?", and "Can I get you anything?" are two questions posed to me at least once every day. He knows where to put the heating pad, how to stop the chills, what pills to bring, what crackers taste the best, and what I look like right before I'm about to sink from over-doing it. He insists on getting me out of the house when I'm down and taking me on trips even when I sleep the whole way in the back seat.
He is adamant that I live the life I love....he has never allowed me to be a victim, even when I wanted to. He has taken every phone call about test results with poise and determination,
optimism and calm and reason.
Is he so perfect? No. But he is the perfect man for me in how I have dealt with living with the
beast that invaded our home almost eight years ago. And even though I was never a big believer in Cinderella, my prince, my knight in shining armor, showed up at my bedside on May 14th, 2001 when "cancer" was being whispered in my ear. I never knew the depths of the man I had lived with for 17 years prior to that day, but I certainly do now.
This past Tuesday, the pastor of the Food Bank where I volunteer some of my time asked me
how Raul was doing. "Oh, he's fine." I answered as always. But it really got me thinking. Is he really??? I should probably find out when he gets back home tonight. He has been away all week, in Scottsdale, Arizona. He is at a conference filled with great fun and food and decadence and natural Arizona beauty. Being pampered at a five-star resort...no one to look after but himself. He so deserves to be there. And when he walks through the door this afternoon, I will ask first..."How do you feel?" and "Can I get you anything?".
I will make sure that he is fine, really fine and not just saying so. You see, no matter what I have written here and how many people I have credited for my continued victories in this battle, next to God, he is the one person I am certain I could not have fought this war without. There are great physicians, nurses and caregivers all over the country, but there is only one Raul
and I am so, so grateful he lays his head on the pillow beside mine every night. I am certainly blessed to have a husband strong enough to stand behind me...always...even when no one can see that it is he who is holding me up.
"How are you?", he asked. "I'm fine", I replied. "Any fool could see that," he answered.
First line from first date with Raul. 5-4-82. I was hooked.
Friday, September 26, 2008
Tuesday, September 23, 2008
It's gonna rain
In all my years of writing in journals and now blogging, I have recorded my relationships with so many people. I have talked about all my relatives. My ever-present and strong husband and beautiful daughter. You all know I lost my Dad in '07...the "bad " year. I have talked about my friends, the faithful ones who share in my ups and downs in all kinds of different ways. I have mentioned my wonderful boss and my church members who pray every day for me. You know about my show dogs and my dog people. I have written about them all. But, looking back through almost eight years of writing, it is easy to see that I have written the most about my medical team and my fellow soldiers in the battle against cancer. To me, the entries I love the best, love to re-read and remember why I wrote what I wrote, are the entries about my doctor,
my nurse practitioner, and my chemo nurses.
I have written about them so many times...for them, for me, and for the people out there who
somehow find their way to this obscure little blogspot. I have always wanted everyone to know the truth about what goes on in those offices on Asheville Avenue. I want everyone to know that I believe without my faith, family and them...my girls....that I would not be sitting here on a chilly September morning in 2008, getting ready to plan for Parent's Weekend at NCSU during my daughter's senior year of college.
I have been so blessed to be hand-picked by God to be cared for by everyone at CCNC Cary.
And, truthfully, I have for over a year, thought occasionally...when things looked dark... about the words I would write to each of them if at anytime we figured out that the fight was over. Those thoughts and words are tucked away in a secret place in my heart, and after yesterday, I got a slight twinkle....a sublte hint that I might not have to use those words for a long, long time....maybe never. Because my friends, it's gonna rain.
After my meeting with Maha yesterday, after learning my blood counts were, for the first time in regular chemo treatments, too low to get a second dose right now, we were once again discussing how far we'd come in breast cancer detection, prevention, and treatment.
She threw out one last comment with a twinkle in her eye, that I should see what's coming down the pike. Meaning, new developments are on the way....something is out there to make her hopeful...to get her excited, and I now believe I will get to see it.
I turned back to her and recalled a line from the show "Stand Up for Cancer" where a research doctor was talking about their advancements and how close they were to cracking the impossible code that will stop this awful, insidious disease. He gave the analogy that they (researchers) felt like it feels just before a rainfall, where you can feel it in the wind, smell it in the air, almost taste it before the downpour starts. And then he said, "Well, guess what? It's gonna rain." It made the hair on the back of my neck stand up.
So, I think back on this year...2008...where in its beginning I was fighting for time with Ixempra, my family made the declaration and then the same thing came from Maha....that this was the year. The year of blessings and love and miracles. Even if it would all end tomorrow, it would still be true. It has been one heck of a year so far. But perhaps, we haven't seen the best of it. Perhaps, my friends, its gonna rain any day now and by Dec.31 2008 it will be pouring.
"Test me in this", say the Lord Almighty, "and see if I will not throw open the floodgates of heaven and pour out so much blessing that you will not have room enough for it." Mal. 3:10
my nurse practitioner, and my chemo nurses.
I have written about them so many times...for them, for me, and for the people out there who
somehow find their way to this obscure little blogspot. I have always wanted everyone to know the truth about what goes on in those offices on Asheville Avenue. I want everyone to know that I believe without my faith, family and them...my girls....that I would not be sitting here on a chilly September morning in 2008, getting ready to plan for Parent's Weekend at NCSU during my daughter's senior year of college.
I have been so blessed to be hand-picked by God to be cared for by everyone at CCNC Cary.
And, truthfully, I have for over a year, thought occasionally...when things looked dark... about the words I would write to each of them if at anytime we figured out that the fight was over. Those thoughts and words are tucked away in a secret place in my heart, and after yesterday, I got a slight twinkle....a sublte hint that I might not have to use those words for a long, long time....maybe never. Because my friends, it's gonna rain.
After my meeting with Maha yesterday, after learning my blood counts were, for the first time in regular chemo treatments, too low to get a second dose right now, we were once again discussing how far we'd come in breast cancer detection, prevention, and treatment.
She threw out one last comment with a twinkle in her eye, that I should see what's coming down the pike. Meaning, new developments are on the way....something is out there to make her hopeful...to get her excited, and I now believe I will get to see it.
I turned back to her and recalled a line from the show "Stand Up for Cancer" where a research doctor was talking about their advancements and how close they were to cracking the impossible code that will stop this awful, insidious disease. He gave the analogy that they (researchers) felt like it feels just before a rainfall, where you can feel it in the wind, smell it in the air, almost taste it before the downpour starts. And then he said, "Well, guess what? It's gonna rain." It made the hair on the back of my neck stand up.
So, I think back on this year...2008...where in its beginning I was fighting for time with Ixempra, my family made the declaration and then the same thing came from Maha....that this was the year. The year of blessings and love and miracles. Even if it would all end tomorrow, it would still be true. It has been one heck of a year so far. But perhaps, we haven't seen the best of it. Perhaps, my friends, its gonna rain any day now and by Dec.31 2008 it will be pouring.
"Test me in this", say the Lord Almighty, "and see if I will not throw open the floodgates of heaven and pour out so much blessing that you will not have room enough for it." Mal. 3:10
Tuesday, September 16, 2008
Thoughts while waiting
Have we made a mistake here? Have we broken some kind of rule here, becoming so entwined in each others' lives...such great and caring friends within the confines of this office?? We have grown to care so much about each other. The doctor and the nurses.....stepping over the line into a deep emotional relationship with their patient....with me.
Right now, they are all worrying about me, praying about me "sending me nothing but good thoughts", the PC Rebecca says (I know she is praying), hating the fact that I have been called with bad news and called in to run scans two weeks earlier than we thought. I know they are pulling for me, hoping against reason for me, and at times they grieve for me. (maybe today?)
And I am a study in opposites right now, sitting in an exam room, waiting for Maha, overwhelmed by gratitude, overcome with a sense of guilt. Guilt because I hate dragging them all into the constant drama of my up-and-down cancer-ridden life. Gratitude because I love them all so much and they are part of my family, part of my life, and, partnered so very well with God, a huge part of the reason I am still here after all this time.
As I wait for my latest meeting regarding a higher tumor marker and the latest pictures of possible disease progression, it is hard to explain the emotions I feel. I try to write them on a yellow legal pad, knowing that my doctor will use the next page of the same pad to describe what things look like and what drugs we will try next. I know she is waiting just as anxiously as me, having given out her cell phone number to the radiologist who is reading my CT scans. By the time she makes it into the room, I am, for the first time ever in the exam room, crying.
When Maha does walk in, her first question to me is "have you been crying?" I am sure she is surprised to see evidence of such a thing...rarer than the pileated woodpecker. I tried to explain, now dry-eyed, that my tears were shed because of everyone's concern for me right now...my family, my friends, my dear family at CCNC. Knowing that they were riding another roller coaster with me, all of us gripping the guardrail in front of us, petrified of making the crest of the highest point and seeing what the drop will be like. My tears had not been for me and the upcoming results, they were for everyone who loved me and who were waiting to know what was coming.
"There is progression," starts Maha, "but it is slight." Seven little words, another flood of tears,
from me...how bizarre. She must think I'm losing it. But these were tears of relief. Not for me but for the dozens of phone calls that will have a positive message. Relief for my girls in the back,
for Janet, for Rebecca who had been bustling around the exam room area. Smiles all around for the fact that we had a new plan, a new set of artillery, a starting point much less scary, much less urgent than the last time. We will save the big guns for later. Hugging Maha, and crying tears of relief for her, my heart of hearts, because we had a fight to fight on relatively even ground. Because she hadn't had to tell me news like she had last November. Because what she is scribbling down on the yellow legal pad is a battle plan we are approaching with calm and confidence. Hallelujah.
As I was driving back home yesterday, making my phone calls, hearing everyone's relief through the cell signals, the new set of drugs already coursing through my veins, I thought a lot about the fact that the group of women who surround me at CCNC may have crossed over an invisible line into my dramatic little world. But what should I expect?
Three of them have been with me almost eight years, one at least five. I am a long-termer. Something they don't see a lot of. No wonder we all love each other so. Out side of their immediate family, they see me more often than their relatives, and vice-versa. There have been no rules broken here.....but there have been many followed. Rules like "This is my command: Love each other." John 15:17., and "if I have a faith that can move mountains, but have I not love, I am nothing." 1Cor. 13:2b, and this one "Whoever loves God, must also love his brother." 1John 4:21. When it comes down to it, we are following some of the greatest sets of rules ever written,
SO we all are just as we should be: caring for each other, loving each other, inspiring each other,
making my life, and hopefully theirs, richer, deeper, purpose-filled and meaningful. No rules broken, no mistakes made...we are all doing it just right.
Right now, they are all worrying about me, praying about me "sending me nothing but good thoughts", the PC Rebecca says (I know she is praying), hating the fact that I have been called with bad news and called in to run scans two weeks earlier than we thought. I know they are pulling for me, hoping against reason for me, and at times they grieve for me. (maybe today?)
And I am a study in opposites right now, sitting in an exam room, waiting for Maha, overwhelmed by gratitude, overcome with a sense of guilt. Guilt because I hate dragging them all into the constant drama of my up-and-down cancer-ridden life. Gratitude because I love them all so much and they are part of my family, part of my life, and, partnered so very well with God, a huge part of the reason I am still here after all this time.
As I wait for my latest meeting regarding a higher tumor marker and the latest pictures of possible disease progression, it is hard to explain the emotions I feel. I try to write them on a yellow legal pad, knowing that my doctor will use the next page of the same pad to describe what things look like and what drugs we will try next. I know she is waiting just as anxiously as me, having given out her cell phone number to the radiologist who is reading my CT scans. By the time she makes it into the room, I am, for the first time ever in the exam room, crying.
When Maha does walk in, her first question to me is "have you been crying?" I am sure she is surprised to see evidence of such a thing...rarer than the pileated woodpecker. I tried to explain, now dry-eyed, that my tears were shed because of everyone's concern for me right now...my family, my friends, my dear family at CCNC. Knowing that they were riding another roller coaster with me, all of us gripping the guardrail in front of us, petrified of making the crest of the highest point and seeing what the drop will be like. My tears had not been for me and the upcoming results, they were for everyone who loved me and who were waiting to know what was coming.
"There is progression," starts Maha, "but it is slight." Seven little words, another flood of tears,
from me...how bizarre. She must think I'm losing it. But these were tears of relief. Not for me but for the dozens of phone calls that will have a positive message. Relief for my girls in the back,
for Janet, for Rebecca who had been bustling around the exam room area. Smiles all around for the fact that we had a new plan, a new set of artillery, a starting point much less scary, much less urgent than the last time. We will save the big guns for later. Hugging Maha, and crying tears of relief for her, my heart of hearts, because we had a fight to fight on relatively even ground. Because she hadn't had to tell me news like she had last November. Because what she is scribbling down on the yellow legal pad is a battle plan we are approaching with calm and confidence. Hallelujah.
As I was driving back home yesterday, making my phone calls, hearing everyone's relief through the cell signals, the new set of drugs already coursing through my veins, I thought a lot about the fact that the group of women who surround me at CCNC may have crossed over an invisible line into my dramatic little world. But what should I expect?
Three of them have been with me almost eight years, one at least five. I am a long-termer. Something they don't see a lot of. No wonder we all love each other so. Out side of their immediate family, they see me more often than their relatives, and vice-versa. There have been no rules broken here.....but there have been many followed. Rules like "This is my command: Love each other." John 15:17., and "if I have a faith that can move mountains, but have I not love, I am nothing." 1Cor. 13:2b, and this one "Whoever loves God, must also love his brother." 1John 4:21. When it comes down to it, we are following some of the greatest sets of rules ever written,
SO we all are just as we should be: caring for each other, loving each other, inspiring each other,
making my life, and hopefully theirs, richer, deeper, purpose-filled and meaningful. No rules broken, no mistakes made...we are all doing it just right.
Monday, September 8, 2008
The Touch
It is December 17th, 2001.
I am in the hospital, as sick as I can be. My counts are at .00001. I have mucositis everywhere.
I have a fever. There are 14 bags of medicine hooked into my Neo-star external catheter. I am too weak to move, to weak to think. Trying to stay awake through a cloud of morphine. It is the lowest of low points during my stem-cell transplant. My cousin Brenda has faithfully spent the night on a cot next to me. My husband, banned from me by a cold. Little moans escape me with each exhale. "What's wrong?" Brenda asked. "Nothing." I say, "it's just the noise I make when I'm miserable."
One of the bad, bad times, that day back in December 2001. 2 days after my 46th birthday. 8 days before Christmas. I easily could have been convinced I was dying. Knocked down by massive doses of chemo.....before my stem-cells can start back to work. Holding on, barely able to speak. A lost day to all the medical treatments, pain and semi-awake state. Until that night.
Somewhere during that night or early morning hours...in that hospital room with only a soft light on over my head and the constant whirr and whoosh of the IV pumps, I was awakened. Awakened by an unmistakable hand on my left shoulder. I opened my eyes to find no one standing there. I was alone. Alone with the knowledge that I had been touched. Touched by a strong and comforting hand. A touch that said "I am here, I am with you. It is well."
Somehow I knew it was all real.....not a dream...no way. God had come, as always, just when I needed Him most.
It is December 18th, 2001. I wake up and I know. My counts are 600. The doctor warns about premature optimism, but I can see he is pleased. I can feel it in my bones, my body, my soul.
My new immune system has kicked in. The stem cells have engrafted. All is well, just as I was told the night before.
I walked out of the hospital on December 21st. Home to my family. Home to Christmas. But most importantly home with the first-hand knowledge that I am never alone, particularly in those dark and dreadful hours.
Today is September 8th, 2008. I was sitting on my front porch this morning. It was a beautiful start to the day. For some reason, I thought about that touch as a slight breeze blew across my shoulders. A gentle reminder that after all this time, down this long and winding path, God's message has never changed: "I am here, I am with you. It is well."
"If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." Psalm 139:9-10
I am in the hospital, as sick as I can be. My counts are at .00001. I have mucositis everywhere.
I have a fever. There are 14 bags of medicine hooked into my Neo-star external catheter. I am too weak to move, to weak to think. Trying to stay awake through a cloud of morphine. It is the lowest of low points during my stem-cell transplant. My cousin Brenda has faithfully spent the night on a cot next to me. My husband, banned from me by a cold. Little moans escape me with each exhale. "What's wrong?" Brenda asked. "Nothing." I say, "it's just the noise I make when I'm miserable."
One of the bad, bad times, that day back in December 2001. 2 days after my 46th birthday. 8 days before Christmas. I easily could have been convinced I was dying. Knocked down by massive doses of chemo.....before my stem-cells can start back to work. Holding on, barely able to speak. A lost day to all the medical treatments, pain and semi-awake state. Until that night.
Somewhere during that night or early morning hours...in that hospital room with only a soft light on over my head and the constant whirr and whoosh of the IV pumps, I was awakened. Awakened by an unmistakable hand on my left shoulder. I opened my eyes to find no one standing there. I was alone. Alone with the knowledge that I had been touched. Touched by a strong and comforting hand. A touch that said "I am here, I am with you. It is well."
Somehow I knew it was all real.....not a dream...no way. God had come, as always, just when I needed Him most.
It is December 18th, 2001. I wake up and I know. My counts are 600. The doctor warns about premature optimism, but I can see he is pleased. I can feel it in my bones, my body, my soul.
My new immune system has kicked in. The stem cells have engrafted. All is well, just as I was told the night before.
I walked out of the hospital on December 21st. Home to my family. Home to Christmas. But most importantly home with the first-hand knowledge that I am never alone, particularly in those dark and dreadful hours.
Today is September 8th, 2008. I was sitting on my front porch this morning. It was a beautiful start to the day. For some reason, I thought about that touch as a slight breeze blew across my shoulders. A gentle reminder that after all this time, down this long and winding path, God's message has never changed: "I am here, I am with you. It is well."
"If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." Psalm 139:9-10
Wednesday, September 3, 2008
I'll take those days.
I was so glad to see her today. The patient I had talked to last week who was in a very dark place. The woman who could not get out of the bed, so paralyzed by her predicament...so depressed by her diagnosis....put under by the way her life had been forever changed.
Today she was in a better place. She was learning to live with it. She was beginning to wander out of the darkness a day or two at a time. She was smiling at me. It was great to see.
I also have been waiting for a call from another woman who has not left her house since finding out about her stage IV diagnosis. She cannot function. She cannot bring herself to call me, to reach out to a fellow sister in the fight. She is in the darkest of places. Refusing to get help, refusing to accept love and caring, refusing to live.
I have given the first lady my pep talk. Told her all the things I will say to the second woman when and if she calls. Things like how you still have your life to live. How you cope with a new "normal". How you must not let the darkness over take you. How you have to fight, fight, fight...never give in...always have hope. How you can live a long and full life even with this disease following you around.
And if that doesn't help them. If either women cannot get past their circumstances and get on with the business of the battle, I have one more thing to say to them: if I could, I'd take the days. I'll take all the days you are wasting. All that living you are not doing. Every hour you spend poorly by feeling so sorry for yourself...give them to me. I will live them for you. I will add those days to my own. I will spend them wisely, cherishing each moment, recognizing each day for the gift that it is. I will use that day you spent locked in your room to ride in a convertible, kayak on a lake, go out to a great restaurant, cruise up the waterway on a boat,
walk down the street with my husband, sit outside in the early evening with a glass of wine and Michael Buble on the stereo, and take my daughter shopping for shoes. I promise, if I could only have your wasted days, I would see to it that they were spent with so much purpose and enthusiasm and love, it would make you want them back.
Really, my friends, life is precious, days are like diamonds. And I want all my time to be well and meaningfully spent. So I say to anyone who makes it a habit of wasting your days.....please don't. To those of us who live with the fact that our days may be limited.....that time is golden.
Honor God and spend it fully.
"Better is one day in your courts than a thousand elsewhere." Psalm 84:10
Today she was in a better place. She was learning to live with it. She was beginning to wander out of the darkness a day or two at a time. She was smiling at me. It was great to see.
I also have been waiting for a call from another woman who has not left her house since finding out about her stage IV diagnosis. She cannot function. She cannot bring herself to call me, to reach out to a fellow sister in the fight. She is in the darkest of places. Refusing to get help, refusing to accept love and caring, refusing to live.
I have given the first lady my pep talk. Told her all the things I will say to the second woman when and if she calls. Things like how you still have your life to live. How you cope with a new "normal". How you must not let the darkness over take you. How you have to fight, fight, fight...never give in...always have hope. How you can live a long and full life even with this disease following you around.
And if that doesn't help them. If either women cannot get past their circumstances and get on with the business of the battle, I have one more thing to say to them: if I could, I'd take the days. I'll take all the days you are wasting. All that living you are not doing. Every hour you spend poorly by feeling so sorry for yourself...give them to me. I will live them for you. I will add those days to my own. I will spend them wisely, cherishing each moment, recognizing each day for the gift that it is. I will use that day you spent locked in your room to ride in a convertible, kayak on a lake, go out to a great restaurant, cruise up the waterway on a boat,
walk down the street with my husband, sit outside in the early evening with a glass of wine and Michael Buble on the stereo, and take my daughter shopping for shoes. I promise, if I could only have your wasted days, I would see to it that they were spent with so much purpose and enthusiasm and love, it would make you want them back.
Really, my friends, life is precious, days are like diamonds. And I want all my time to be well and meaningfully spent. So I say to anyone who makes it a habit of wasting your days.....please don't. To those of us who live with the fact that our days may be limited.....that time is golden.
Honor God and spend it fully.
"Better is one day in your courts than a thousand elsewhere." Psalm 84:10
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