When you get back on this blog, know this is for you: Do not be afraid, for I am with you. You are not alone now or ever. You may need to draw closer, but remember, I have always been right beside you. I am your rock, your strength, your redeemer.
There is so much I want to talk to you about, but have not been able to figure out how to respond to people who comment on this sight. Please e-mail me at kapers@northstate.net. There is so much in the journal meant to uplift and encourage. I can direct you to those posts. So far, I have lived five years with bone, lung, liver and brain mets. I am treated off and on between chemo and hormone therapies. Just did radiation on one site on my femur for pain and had two lesions removed in my brain by the wonders of the Cyber-knife. There is one of these marvelous machine in Concord and one Chapel Hill.
There is always hope, my dear, and at your stage of the game, there are countless combinations of drugs to try. This is a battle...a long one. But the good news is they are treating us as chronic patients, not terminal ones. Always remember that.....and if your Dr. doesn't take that position, find a new one. K
Saturday, January 31, 2009
The Fireman
Yesterday, I went back to UNC Hospital for a follow-up with Dr. Morris, the guy who did my Cyber-knife procedure back in December. You know, the marvelous wonder of a laser-knife
machine that burned out the two little lesions that have been haunting my brain for the past 14 months. The procedure where I walked in two days before Christmas and trusted that I would walk out within an hour with a new brain, a clear brain, a brain where cancer cells were dying off by the minute because they had been zapped in a big way. And, as far as we can tell, that's exactly what happened. Talk about faith. Dr. Morris and I have faith that even though we cannot see into my head right now, we know those two small lesions are gone.
I scored a ten out of ten on my neurological function tests. Dr. Morris was grinning from ear to ear.....the first time I have really seen him smile. He offered to do an MRI right there, just so we could take a peek. I turned him down. Why would I do that? Because I also have to have faith that not only would the two be gone, but no new ones would have appeared. Because if a new one would have shown up....what then??? Do we stop this round of chemo that seems to be working so well for me and put the knife on it???? Or do I live with the knowledge of the lesion's
existence for two more months while we finish up our chemo rounds??? Neither sounded like any kind a stress I needed to start the new year.
So I told him no and he was just fine with that. We will stick with the plan and wait two more months. I know he is ready and willing and will be standing by if I need the knife again. We talked about using it on my chest wall. That may be next. As he knows, he is my Fireman. His job is to put out any little fires that pop up all around the inside of me that qualify for "knifing". Even as the hot, slow-burning embers that make up the disease I fight continue to circulate and wreak their havoc, I have faith in the Fireman and he has faith in me. We both feel we can do some cutting-edge (pardon the pun) stuff together. We are up for the task.
I always look for profound stuff from my physicians. They usually say remarkable things to me,
if I am listening. I never thought I would get anything from the Fireman because he was so technical, so focused on the procedure. Busy and lost in thought. But yesterday was a different Dr. Morris. He was pleased with me and the exam and very personable. So I got a profound statement from him which really took my by surprise. Loosely translated, Dr. Morris' said: You know, way back when you got your stem-cell transplant, we all thought it was the best thing to do for women in your position. Now, we don't believe they should be done in breast cancer cases like yours. But I look at you and have to say that if anyone asked me if I thought it worked for you, my answer would have to be yes. Look at all you have been able to do.
Thanks, Mr. Fireman. What a great gift you gave me as I was leaving your office. Thanks for the boost, the affirmation, your non-analytical, straight from the gut opinion. It made my day
and landed you in my journal and filled me with gratitude. I sometime struggle with the fact that I chose that extreme and awful treatment path in 2001. To hear you say that was wonderful. And not only is it "look at all I have been able to do." But it is look at all I have been able to see. The list of amazing things is so long I can't even begin to put them in words. Most importantly, look at all the people I have been able to love.
I'll be back in the fireman's office in two months. They'll look around in my brain then. I have no doubt they will find nothing remarkable. No fires, not even a spark. But if I do decide to let Dr. Morris go after something else, I won't be so apprehensive this time. Because in the ten minutes we spent together this past Friday, I realized that he gets me. He really does get what I'm all about. He dropped all the techno-speak, data, and medical languages, and spoke to me, the woman in the fight. Another good man has secured his place in my boat and the raging sea has one more reason to calm itself.
"Be merciful to those who doubt; snatch others from the fire and save them;" Jude:22-23
machine that burned out the two little lesions that have been haunting my brain for the past 14 months. The procedure where I walked in two days before Christmas and trusted that I would walk out within an hour with a new brain, a clear brain, a brain where cancer cells were dying off by the minute because they had been zapped in a big way. And, as far as we can tell, that's exactly what happened. Talk about faith. Dr. Morris and I have faith that even though we cannot see into my head right now, we know those two small lesions are gone.
I scored a ten out of ten on my neurological function tests. Dr. Morris was grinning from ear to ear.....the first time I have really seen him smile. He offered to do an MRI right there, just so we could take a peek. I turned him down. Why would I do that? Because I also have to have faith that not only would the two be gone, but no new ones would have appeared. Because if a new one would have shown up....what then??? Do we stop this round of chemo that seems to be working so well for me and put the knife on it???? Or do I live with the knowledge of the lesion's
existence for two more months while we finish up our chemo rounds??? Neither sounded like any kind a stress I needed to start the new year.
So I told him no and he was just fine with that. We will stick with the plan and wait two more months. I know he is ready and willing and will be standing by if I need the knife again. We talked about using it on my chest wall. That may be next. As he knows, he is my Fireman. His job is to put out any little fires that pop up all around the inside of me that qualify for "knifing". Even as the hot, slow-burning embers that make up the disease I fight continue to circulate and wreak their havoc, I have faith in the Fireman and he has faith in me. We both feel we can do some cutting-edge (pardon the pun) stuff together. We are up for the task.
I always look for profound stuff from my physicians. They usually say remarkable things to me,
if I am listening. I never thought I would get anything from the Fireman because he was so technical, so focused on the procedure. Busy and lost in thought. But yesterday was a different Dr. Morris. He was pleased with me and the exam and very personable. So I got a profound statement from him which really took my by surprise. Loosely translated, Dr. Morris' said: You know, way back when you got your stem-cell transplant, we all thought it was the best thing to do for women in your position. Now, we don't believe they should be done in breast cancer cases like yours. But I look at you and have to say that if anyone asked me if I thought it worked for you, my answer would have to be yes. Look at all you have been able to do.
Thanks, Mr. Fireman. What a great gift you gave me as I was leaving your office. Thanks for the boost, the affirmation, your non-analytical, straight from the gut opinion. It made my day
and landed you in my journal and filled me with gratitude. I sometime struggle with the fact that I chose that extreme and awful treatment path in 2001. To hear you say that was wonderful. And not only is it "look at all I have been able to do." But it is look at all I have been able to see. The list of amazing things is so long I can't even begin to put them in words. Most importantly, look at all the people I have been able to love.
I'll be back in the fireman's office in two months. They'll look around in my brain then. I have no doubt they will find nothing remarkable. No fires, not even a spark. But if I do decide to let Dr. Morris go after something else, I won't be so apprehensive this time. Because in the ten minutes we spent together this past Friday, I realized that he gets me. He really does get what I'm all about. He dropped all the techno-speak, data, and medical languages, and spoke to me, the woman in the fight. Another good man has secured his place in my boat and the raging sea has one more reason to calm itself.
"Be merciful to those who doubt; snatch others from the fire and save them;" Jude:22-23
Monday, January 26, 2009
This is my testimony
I did something miraculous this past week. I attended a four day conference at my church. Guest speakers and ministers came every day to talk about the power of the Lord and the fact that He still wants to perform wonderful, miraculous things in our lives. It was great stuff.
What was so miraculous for me??? I was there all four days. From 8:30 in the morning to as late as 9:30 at night. We sat, we stood, we walked around, even danced a little.....two days it was more than 12 hours.
I kept waiting for it to "catch up" with me. Kept waiting for the pain in my hip to come and remind me of the darkness that was lurking in my bones. I slept every night with a pain pill on my night stand, thinking I would be bolted out of sleep by the screaming pain from my pelvis.....reminding me that I cannot do the same things as everyone else. Or that I should have known that my hip would give out and have to pay the price of 30 minutes of excruciating agony.
But the pill is still there. It is Monday morning, and that Vicodin tablet sits by a glass of water on the nightstand as a reminder to me to never underestimate the power of God when you are walking in a place that He wants you to be.
Not only is it unreal to me that I never had any pain, but I couldn't believe and neither could my husband, that I had the energy to put in four consecutive days of at least 11 hours of sitting, standing, and doing. I have to be honest....coming home several nights after nine o'clock was slightly disorienting for me. I am normally on the sofa by 7:00. So I had some mini-miracles.
It is now turning into memories, but it is a lesson I'll never forget in how good and faithful God can be.
When the conference was announced last winter and the dates began popping up on the church bulletins, I do remember wondering if I should even sign up. Would I be physically able to attend? Would I still be here??? I watched time go by and the conference grow near and finally trusted enough to register just two weeks ago, still thinking I would only attend several hours a day. How foolish of me to underestimate my God. I pray I will never forget this lesson.
And just to make me really aware that God was with me, showing me things, as always, the conference was kicked off by someone saying the exact words I had complained about in my last post. A church friend and dear, sweet woman whom I sat beside and hadn't seen since early fall, of course asked what had been happening over the last four months. After I had given her a brief history of all the treatments and ups and downs, she said, "But Kathy, considering all that, you look great." I told her that I didn't want to hear that.....I wanted to here of good number, great scans, working veins, etc. Her answer to me was absolutely perfect. Just what I needed to hear. Just what I needed to be humbled. From God's mouth to hers: "But this is your testimony. Just think what an encouragement you are when people look at you. Be thankful for what the Lord has enabled you to do."
Ouch. Forgive me. What a wussy I have been. So this is what I now want. I do want people to look at me and be amazed. I want them to think "how can this be?" For this is a big part of my testimony. Not only am I still here, but I am, relatively speaking, still going strong and I am strong in the power of the Lord. Amen
"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes." Ephesians 6:10,11
What was so miraculous for me??? I was there all four days. From 8:30 in the morning to as late as 9:30 at night. We sat, we stood, we walked around, even danced a little.....two days it was more than 12 hours.
I kept waiting for it to "catch up" with me. Kept waiting for the pain in my hip to come and remind me of the darkness that was lurking in my bones. I slept every night with a pain pill on my night stand, thinking I would be bolted out of sleep by the screaming pain from my pelvis.....reminding me that I cannot do the same things as everyone else. Or that I should have known that my hip would give out and have to pay the price of 30 minutes of excruciating agony.
But the pill is still there. It is Monday morning, and that Vicodin tablet sits by a glass of water on the nightstand as a reminder to me to never underestimate the power of God when you are walking in a place that He wants you to be.
Not only is it unreal to me that I never had any pain, but I couldn't believe and neither could my husband, that I had the energy to put in four consecutive days of at least 11 hours of sitting, standing, and doing. I have to be honest....coming home several nights after nine o'clock was slightly disorienting for me. I am normally on the sofa by 7:00. So I had some mini-miracles.
It is now turning into memories, but it is a lesson I'll never forget in how good and faithful God can be.
When the conference was announced last winter and the dates began popping up on the church bulletins, I do remember wondering if I should even sign up. Would I be physically able to attend? Would I still be here??? I watched time go by and the conference grow near and finally trusted enough to register just two weeks ago, still thinking I would only attend several hours a day. How foolish of me to underestimate my God. I pray I will never forget this lesson.
And just to make me really aware that God was with me, showing me things, as always, the conference was kicked off by someone saying the exact words I had complained about in my last post. A church friend and dear, sweet woman whom I sat beside and hadn't seen since early fall, of course asked what had been happening over the last four months. After I had given her a brief history of all the treatments and ups and downs, she said, "But Kathy, considering all that, you look great." I told her that I didn't want to hear that.....I wanted to here of good number, great scans, working veins, etc. Her answer to me was absolutely perfect. Just what I needed to hear. Just what I needed to be humbled. From God's mouth to hers: "But this is your testimony. Just think what an encouragement you are when people look at you. Be thankful for what the Lord has enabled you to do."
Ouch. Forgive me. What a wussy I have been. So this is what I now want. I do want people to look at me and be amazed. I want them to think "how can this be?" For this is a big part of my testimony. Not only am I still here, but I am, relatively speaking, still going strong and I am strong in the power of the Lord. Amen
"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's schemes." Ephesians 6:10,11
Friday, January 9, 2009
The Trinity
A question was posed to me at my last exam at the oncologist's office. I had heard it before. It was now becoming a running theme. I had just finished up a month of seeing new doctors.....five of them to be exact......new nurses, at least 8, and new technicians, too many to remember. Between the scans, exams, tests and treatments in the world of radiation oncology, plus the now infamous liver biopsy, I have been paraded before dozens of health care professionals. So the question that was posed upon my return to the world of chemo treatments was, "was everyone amazed at how good you look?"
Well, yes. As a matter of fact they were. They always are. The people who hold my files and history in their hands for the first time are always surprised to see me looking like I do. If you saw me on the street, you would never know what lies beneath my skin. You would never guess the extent of the battle that is fought every day inside of me. There have been many times over the past eight years when I did look sick.....sometimes deathly sick....but not right now. Not in January of 2009.
And while I am pleased every time I am asked the question. While it still makes me smile when people say that I look amazing considering what I've been through, I try not to hang my hat on any compliments about my physical exterior. As a chronic cancer patient, I know that the good times....the times when I look "normal".... can change on a dime. Hair falls out when you least expect. Bone pain can make you hunch over as you walk, aging you by decades. Skin tone can wash out, faces puff out, arms bruise and breaths shorten. My physical appearance is fleeting...ever-changing....never to be trusted.
So when you see me and want to tell me how great I look, go ahead. I'll say thank you. But what I really want to say is this: You should see how I look on the inside. My organs and bones are riddled with ugly cells that are trying their best to kill me. My pelvis looks like swiss cheese, my lungs are scarred, my liver contains dark and ominous shadows. It feels like there is probably very little lining left in my stomach and esophagus. I have no feeling in my feet and right fingers. My boobs are fake, my chest is scarred and riddled with broken blood vessels, my veins are all collapsing. And there are days when I just want it all to stop and everyone to leave me alone because no matter how good I look to you all, this still bites, I still hurt, I still can't sleep. My mind never rests.
But that's okay. I'm still here. I'm still grateful. I still talk to my daughter every day, hug my husband, pet my dogs. I am still blessed. In the human version of a trinity; mind, body, and spirit, I'm still forming a triangle. I still have all three parts. And although the body is the weakest, you know what? It always was....always has been. My spirit is the strongest, praise God, and the mind...my mind, well it has its strong days and its weak days. My trinity has worked very well for me over this long and arduous cancer journey. At times the trinity it has been a stronger force than others. And it is only as strong as its weakest part.....that old, beat up on the inside, still lookin' good on the outside body of mine. I am very aware of this ever-weakening link.
And the next time some professional says, "you look fabulous considering what you have and what you've been through." (Dr. Rubin) I'll smile and nod as always. Just know that what I really want to say is can you make the inside of me match the outside???? Can we fix anything about
my current disease condition to make you say that about an MRI, CTscan, or blood work??? Can we still find a way to be amazed about lack of disease progression, tumor markers, CTCs??? THOSE are the compliments I am interested in. That's the amazement I want you to feel. That is the miracle I'm praying for.
"Death and life are in the power of the tongue: and they that love it will eat its fruit." Proverbs 18:21
Well, yes. As a matter of fact they were. They always are. The people who hold my files and history in their hands for the first time are always surprised to see me looking like I do. If you saw me on the street, you would never know what lies beneath my skin. You would never guess the extent of the battle that is fought every day inside of me. There have been many times over the past eight years when I did look sick.....sometimes deathly sick....but not right now. Not in January of 2009.
And while I am pleased every time I am asked the question. While it still makes me smile when people say that I look amazing considering what I've been through, I try not to hang my hat on any compliments about my physical exterior. As a chronic cancer patient, I know that the good times....the times when I look "normal".... can change on a dime. Hair falls out when you least expect. Bone pain can make you hunch over as you walk, aging you by decades. Skin tone can wash out, faces puff out, arms bruise and breaths shorten. My physical appearance is fleeting...ever-changing....never to be trusted.
So when you see me and want to tell me how great I look, go ahead. I'll say thank you. But what I really want to say is this: You should see how I look on the inside. My organs and bones are riddled with ugly cells that are trying their best to kill me. My pelvis looks like swiss cheese, my lungs are scarred, my liver contains dark and ominous shadows. It feels like there is probably very little lining left in my stomach and esophagus. I have no feeling in my feet and right fingers. My boobs are fake, my chest is scarred and riddled with broken blood vessels, my veins are all collapsing. And there are days when I just want it all to stop and everyone to leave me alone because no matter how good I look to you all, this still bites, I still hurt, I still can't sleep. My mind never rests.
But that's okay. I'm still here. I'm still grateful. I still talk to my daughter every day, hug my husband, pet my dogs. I am still blessed. In the human version of a trinity; mind, body, and spirit, I'm still forming a triangle. I still have all three parts. And although the body is the weakest, you know what? It always was....always has been. My spirit is the strongest, praise God, and the mind...my mind, well it has its strong days and its weak days. My trinity has worked very well for me over this long and arduous cancer journey. At times the trinity it has been a stronger force than others. And it is only as strong as its weakest part.....that old, beat up on the inside, still lookin' good on the outside body of mine. I am very aware of this ever-weakening link.
And the next time some professional says, "you look fabulous considering what you have and what you've been through." (Dr. Rubin) I'll smile and nod as always. Just know that what I really want to say is can you make the inside of me match the outside???? Can we fix anything about
my current disease condition to make you say that about an MRI, CTscan, or blood work??? Can we still find a way to be amazed about lack of disease progression, tumor markers, CTCs??? THOSE are the compliments I am interested in. That's the amazement I want you to feel. That is the miracle I'm praying for.
"Death and life are in the power of the tongue: and they that love it will eat its fruit." Proverbs 18:21
Tuesday, January 6, 2009
Happy? New Year
Happy New Year, everyone.
Hope you had a good one. I hope 2009 is going to be a great one! 2008 did not quite end the way I had hoped. Despite advancements and treatments and tests and biopsies, I feel that the past year's work....the year we knew was THE YEAR yielded me just that. Another year. Don't get me wrong....every day, week, month, minute is precious to me. God gives me each day and I try my best to honor Him in the way I live it. But the whispers of the enemy are strong. The strain of living in pain is crushing. The lack of direction and feeling of losing ground is depressing.
And the anger I now feel over a failed liver biopsy that did not yield us enough cells for the one most important piece of information that I suffered through the procedure for is clouding my vision with tears and disappointment. New Year's Eve spent on my sofa, sore and sick from a procedure that will have to be repeated. What a way to ring out the old.
You would not know about any of my "feelings" was I not writing about them here. I look great.
I walk around most days upright and positive......blessed and highly favored. But some days....some days like yesterday that left me angry and confused and discouraged and directionless....just another body on a chair amidst the chaos in the back treatment room. Just the woman under her blanket, not hiding from the cold, but hiding from it all and hiding my tears from all of them. Finally feeling utterly alone.
And then I got God-slapped in the face...twice.
I left 216 Asheville Avenue and went to get my right hip x-rayed. Upset about the liver biopsy, upset about another long day of people messing with me. I was on the cell phone at the radiologist's office, when out in the lobby I noticed a woman, well dressed, pushing a wheelchair across the lobby floor and out the door. Expecting to see an old woman in the chair, I was shocked to realize that the woman was pushing a teenage girl. A girl not too much younger than my daughter. A girl, painfully thin, bald and wrapped in a blanket, drinking a ginger ale and leaving from some sort of radiation treatment. There but for the grace of God..........I suddenly was feeling very grateful.
Then, this morning, I got up and read my devotional for today...a new book which had been given to me by my sister-in-law for Christmas. The devotionalist was working from Proverbs 3:6, "In all thy ways acknowledge Him, and He shall direct thy paths." Her commentary began like this:
Jesus is saying to His people: "You are a chosen one. Walk and talk with me
daily. Tell Me everything--then listen to Me. Let me tell you all things.
I love you....I watch over you....I hear your words. I AM with you
always to help you. I give you my peace."
Oh yeah. In my time of year's end and year's beginning I had forgotten to do that. I had forgotten that I am never alone and my agonies and diatribes and frustrations are always heard by holy ears that never turn away. I had forgotten that my suffering and disappointments and betrayals are miniscule compared to His. I need to remember that every time I want to cover my face in a blanket and weep that He is there with me saying "Tell me everything...I hear your words." What a promise. What a comfort.
So Happy New Year, everyone. This time, I mean it.
Hope you had a good one. I hope 2009 is going to be a great one! 2008 did not quite end the way I had hoped. Despite advancements and treatments and tests and biopsies, I feel that the past year's work....the year we knew was THE YEAR yielded me just that. Another year. Don't get me wrong....every day, week, month, minute is precious to me. God gives me each day and I try my best to honor Him in the way I live it. But the whispers of the enemy are strong. The strain of living in pain is crushing. The lack of direction and feeling of losing ground is depressing.
And the anger I now feel over a failed liver biopsy that did not yield us enough cells for the one most important piece of information that I suffered through the procedure for is clouding my vision with tears and disappointment. New Year's Eve spent on my sofa, sore and sick from a procedure that will have to be repeated. What a way to ring out the old.
You would not know about any of my "feelings" was I not writing about them here. I look great.
I walk around most days upright and positive......blessed and highly favored. But some days....some days like yesterday that left me angry and confused and discouraged and directionless....just another body on a chair amidst the chaos in the back treatment room. Just the woman under her blanket, not hiding from the cold, but hiding from it all and hiding my tears from all of them. Finally feeling utterly alone.
And then I got God-slapped in the face...twice.
I left 216 Asheville Avenue and went to get my right hip x-rayed. Upset about the liver biopsy, upset about another long day of people messing with me. I was on the cell phone at the radiologist's office, when out in the lobby I noticed a woman, well dressed, pushing a wheelchair across the lobby floor and out the door. Expecting to see an old woman in the chair, I was shocked to realize that the woman was pushing a teenage girl. A girl not too much younger than my daughter. A girl, painfully thin, bald and wrapped in a blanket, drinking a ginger ale and leaving from some sort of radiation treatment. There but for the grace of God..........I suddenly was feeling very grateful.
Then, this morning, I got up and read my devotional for today...a new book which had been given to me by my sister-in-law for Christmas. The devotionalist was working from Proverbs 3:6, "In all thy ways acknowledge Him, and He shall direct thy paths." Her commentary began like this:
Jesus is saying to His people: "You are a chosen one. Walk and talk with me
daily. Tell Me everything--then listen to Me. Let me tell you all things.
I love you....I watch over you....I hear your words. I AM with you
always to help you. I give you my peace."
Oh yeah. In my time of year's end and year's beginning I had forgotten to do that. I had forgotten that I am never alone and my agonies and diatribes and frustrations are always heard by holy ears that never turn away. I had forgotten that my suffering and disappointments and betrayals are miniscule compared to His. I need to remember that every time I want to cover my face in a blanket and weep that He is there with me saying "Tell me everything...I hear your words." What a promise. What a comfort.
So Happy New Year, everyone. This time, I mean it.
Subscribe to:
Posts (Atom)