It never fails. It never ceases to amaze me. It happens every time and has happened consistently since 2001. Every time I feel myself going down, every time I want to stop with the positive energy, every time I want to crawl under a rock or run away, every time I want to drown myself in that good-old pity-pool, God puts someone in front of me that makes me say,
"Wow. I am so much better off than they are. I am so blessed to be where I am instead of where that person is."
It happened yesterday. You would think that in my volunteering on the Cancer floor at the local hospital, I wouldn't need to see anything more than what I see every time I am there to snap me out of my misery. But apparently, I do. You only need to read the last month's posts on this journal to know that I was coming from a dark place....that I had lost sight of the light...that the curtains were, once again, getting heavy for me to pull aside. I have been smothered by pain and doubt and bone-weariness. I have been feeling overrun by physical and psychological demons. And, I have been feeling like God has been silent....just watching me...waiting to see how my faith was going to hold up.......knowing that I was so close to saying I'm too tired to do this anymore.
And then came the Oprah show. And there she was. The latest in the line of people put before me to make me ashamed of my self-centeredness. Another person worse off to make me thank God for his mercy and goodness. A woman who had battled stage IV breast cancer since 2003.
Another person past her 5 year mark. A woman who had heard "It's progressing again" four times. A woman in congestive heart failure because of all the treatments....who had been sent home to be with her family.....who had been told her time was short. Oprah was giving her a basement make-over for her husband and two boys. Two boys who may very well lose their mom well before they should, at 10 and 13 years old.
I couldn't take my eyes off the woman. All made-up and smiling. Painfully thin. Oprah also gave her a new bedroom since she spent so much time in there. I thought about my sofa and all the time I spend there. It made me question...did I really need to be laying around by 6:00pm
every night? I don't think I do. I think I need to remember that I can still get out, walk, shop,
and take care of my dogs, even though the pain has kept me from that lately. Pain is relative, and they make pills for it. Pills I can learn to take, if I have to, during the day so I can get out and do the things I can still do and the woman on Oprah cannot. Life is still waiting to be lived
and after watching Oprah yesterday, I knew I could not waste any more days because of the pain. It does not honor God. It does not honor the battle of the woman I saw yesterday on TV.
I bet she would take my wasted days in a skinny minute....to tack on to her own...to have one more day with her family. Of that I have no doubt.
So thanks, God, for that good slap on the face, the bucket of ice-water You poured on my head;
that good swift kick in the pants. I needed it. This afternoon, the sofa will be empty.
"The life I live in the body, I live by faith in the Son of God..." Galation 2:20
Tuesday, November 25, 2008
Monday, November 24, 2008
Pain Changes Everything
Let me tell you like I told my husband on Saturday: pain changes everything. I have been so very blessed to have not known much pain with my recurrence and continued fight. I would have episodes....."bad days"......as I was told by Janet, but have been basically pain-free in this long, long marathon we are running. I have always been up for the task, ready for anything, gung-ho and forging ahead. Then, suddenly I met my match and he is PAIN.
Pain keeps me from getting out of bed or getting a good night's sleep. Pain keeps me from the car, a walk, my dogs, my life. I am growing into my sofa like an outcropping of fungi. I desperately search for the right combination of pills to make me functional, to offer relief and distraction, to feel like I felt just one short month ago before all this started.
I know this sounds absolutely crazy, but I miss my chemo. My old friend whom I knew how to face and handle and recover from. I cannot wait to get back. Back to Asheville Avenue. Back to a routine I can live with. The two weeks that now loom in front of me for radiation seem ridiculously long. My bones suddenly seem ridiculously diseased. Even though the cancer has been there, lurking since 2004, the bone mets have reared their ugly head for the first time and they have been a force to be reckoned with.
So as I sit hear this morning, hoping to make it through Thanksgiving dinner without letting anyone know about the pain, I count myself so, so lucky. I am lucky because I have been in the dark all this time about the pain. I am so lucky that God has had His hand on me, protecting me from times like this when He knew all along the trials that the pain will present. I pray now that we will face the pain...stare it down...conquer it like everything else, and move forward.
Dr. Nancy, my radiation oncologist, came in last week to check the positioning of the treatment
area. We talked briefly and as she was leaving, I thanked her. I heard her say as she exited from the treatment room; "You can thank me when the pain goes away."
Truer words were never spoken. Except of course the words I go to every morning, the words that I cling to...The Word:
"Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you share in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 1Peter4:12-13
Pain keeps me from getting out of bed or getting a good night's sleep. Pain keeps me from the car, a walk, my dogs, my life. I am growing into my sofa like an outcropping of fungi. I desperately search for the right combination of pills to make me functional, to offer relief and distraction, to feel like I felt just one short month ago before all this started.
I know this sounds absolutely crazy, but I miss my chemo. My old friend whom I knew how to face and handle and recover from. I cannot wait to get back. Back to Asheville Avenue. Back to a routine I can live with. The two weeks that now loom in front of me for radiation seem ridiculously long. My bones suddenly seem ridiculously diseased. Even though the cancer has been there, lurking since 2004, the bone mets have reared their ugly head for the first time and they have been a force to be reckoned with.
So as I sit hear this morning, hoping to make it through Thanksgiving dinner without letting anyone know about the pain, I count myself so, so lucky. I am lucky because I have been in the dark all this time about the pain. I am so lucky that God has had His hand on me, protecting me from times like this when He knew all along the trials that the pain will present. I pray now that we will face the pain...stare it down...conquer it like everything else, and move forward.
Dr. Nancy, my radiation oncologist, came in last week to check the positioning of the treatment
area. We talked briefly and as she was leaving, I thanked her. I heard her say as she exited from the treatment room; "You can thank me when the pain goes away."
Truer words were never spoken. Except of course the words I go to every morning, the words that I cling to...The Word:
"Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you share in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 1Peter4:12-13
Thursday, November 20, 2008
The Boat's gettin' crowded
"They're just more great people in your boat," my cousin Brenda said. I had just been explaining to her about how weird it was to be navigating the world of radiation oncology; how difficult is was to meet new nurses, doctors, and technicians. I told her I did not like it that they did not know my story. They had no idea of what the last almost eight years of my life had been like.
The new people in my boat were making things crowded. Brenda thought it was great, and I wanted to elbow them out and overboard into the wicked, wicked waters of the world of cancer treatment. I felt I had enough people in my boat.
Where I was once desperate to find people in my boat, (hence the first journal entry in this blog and the name of this blog), now I was longing for some breathing room. I am still, I find, wanting to be left alone, wanting the waters to be still and calm, wanting a break from the unrelenting storm. I long for a day when my sails are full and the breeze is steady and sure, the charted course is perfect and the rumble of thunder that is a constant companion with having metastatic
disease will be silent....just for one day, one voyage, I want it to be clear sailing. I cannot see a picture of a sailboat on the water without a sense of jealousy and longing. I remember what it is like to have the perfect day, the sun, the sound of the wind filling the mainsail, me Katie and Raul the only people on my boat, the Slow Dance.
The Slow Dance has been gone since 2001, and my journey since then has often been symbolized as being in a boat with the raging storm all around me, God holding me, people in my boat loving me, helping me. People waiting for me on the shore. All of us willing to go the distance, to out ride the storm, to trust in the calm waters of faith, to keep our eyes on the distant shore of hope and determination. To know that the ultimate captain of this ship is no one person or doctor....we are all just passengers under the perfect plan and purposes of God.
So what if the boat is getting crowded again?? As always, we'll all just scoot over and make room on deck. We'll hold onto each other, share knowledge, try a new drug or two, and pray that the voyage will go on and on. We are getting ready to sail through another Thanksgiving, then another birthday, then another Christmas. How blessed am I? Everyone in the boat, some from the very beginning, has helped me see eight of these holidays seasons. In my crowded little boat, we somehow keep going forward...somehow keep on the charted course, somehow keep the rumble of thunder behind us. And God somehow finds a way to keep the waters calm and whisper to me when the winds are high and the storm is brewing, "make room, Kathy. We have a few more of my children who need to climb on board."
"I will lie down and sleep in peace, for you alone, O lord, make me dwell in safety." Psalm 4:8
The new people in my boat were making things crowded. Brenda thought it was great, and I wanted to elbow them out and overboard into the wicked, wicked waters of the world of cancer treatment. I felt I had enough people in my boat.
Where I was once desperate to find people in my boat, (hence the first journal entry in this blog and the name of this blog), now I was longing for some breathing room. I am still, I find, wanting to be left alone, wanting the waters to be still and calm, wanting a break from the unrelenting storm. I long for a day when my sails are full and the breeze is steady and sure, the charted course is perfect and the rumble of thunder that is a constant companion with having metastatic
disease will be silent....just for one day, one voyage, I want it to be clear sailing. I cannot see a picture of a sailboat on the water without a sense of jealousy and longing. I remember what it is like to have the perfect day, the sun, the sound of the wind filling the mainsail, me Katie and Raul the only people on my boat, the Slow Dance.
The Slow Dance has been gone since 2001, and my journey since then has often been symbolized as being in a boat with the raging storm all around me, God holding me, people in my boat loving me, helping me. People waiting for me on the shore. All of us willing to go the distance, to out ride the storm, to trust in the calm waters of faith, to keep our eyes on the distant shore of hope and determination. To know that the ultimate captain of this ship is no one person or doctor....we are all just passengers under the perfect plan and purposes of God.
So what if the boat is getting crowded again?? As always, we'll all just scoot over and make room on deck. We'll hold onto each other, share knowledge, try a new drug or two, and pray that the voyage will go on and on. We are getting ready to sail through another Thanksgiving, then another birthday, then another Christmas. How blessed am I? Everyone in the boat, some from the very beginning, has helped me see eight of these holidays seasons. In my crowded little boat, we somehow keep going forward...somehow keep on the charted course, somehow keep the rumble of thunder behind us. And God somehow finds a way to keep the waters calm and whisper to me when the winds are high and the storm is brewing, "make room, Kathy. We have a few more of my children who need to climb on board."
"I will lie down and sleep in peace, for you alone, O lord, make me dwell in safety." Psalm 4:8
Wednesday, November 12, 2008
Because they know me
Her name is Mary. She is a new nurse. The new doctor's name is Nancy. They are now entering my bubble of a life of cancer treatment. And they don't know me. It is like going on a first date, bringing a new puppy into the house, having your boss replaced, watching your daughter bring home a new boyfriend, having to find someone new to cut your hair just so.
Starting back from the beginning and hashing through my life with these new people. It is mentally disruptive. It is like an unwanted intrusion, a necessary evil, an unavoidable detour.
For I will be entering, for the first time since early 2002, the realm of radiation oncology.
We are looking for pain abatement and bone preservation. My femur was calling out to us with a pain so fierce that it had rendered me close to defeated and the disease that had sat so long and complacent and secondary in my hips and that leg bone was suddenly being the squeaky wheel.
A very painful, squeaky wheel. So we gotta go oil it.
I have been temporarily pulled off a chemo regime that I hated and did not work. Although I would have loved to have seen lower markers, I am relieved to not having another round right now, but I am anxious to get this new "thing", this radiation approach over and done with and back to where I am known.
It was so apparent that medical records could not possibly scratch the surface in letting this new nurse and doctor know about my last 7 1/2 years. They had no idea what was not written in the charts and scans and information that was in their ridiculously thin file with my name on it. There was not enough time in that appointment, not even in the entire day, to make sure they knew who I was and what I was about.
They do not know
What my faith is like
What a great family I have
How I survived a stem-cell transplant
How many rounds of chemo I have been through
How I deal with chronic pain and acute side-effects
How many drugs I have tried and tolerated
How much I value each day
How much I love my medical team in Cary
How bad a stick I am
How bossy I can be
How I love to volunteer around those in my position
That I show dogs
That I am not only interested in increasing the number of my days but also in the quality of those days
That I am a soldier, a warrior, a flat-out life-liver.
That stepping away from my life-line, my safety net, my healers and friends at CCNC...even for
a few weeks is rough for me. I already miss them. I took up 27 minutes of Janet's time on the phone yesterday....not wanting to hang up...wanting to stay connected and close and cared for.
During the long and exhausting initial appointment at the Radiation Oncologist's yesterday,
both the nurse and the doctor asked me the same question at some point in the fact-finding.
If I had lived here (Greensboro) for over three years, why was I still being treated in Cary.
Why had I not been seeing someone locally. I wanted to answer them with everything I have just written about in today's entry. The answer to that question, which is asked of me often, is multi-faceted and partly summed up well in the words written here today. But, both times, when asked by nurse Mary and doctor Nancy, I gave the same, simple reply: Because they know me. And that was the only reply that was necessary.
"Oh Lord, you have searched me and you know me. You know when I sit and when I rise;
you perceive my thoughts from afar.......you are familiar with all my ways." Psalms 139:1-3
Starting back from the beginning and hashing through my life with these new people. It is mentally disruptive. It is like an unwanted intrusion, a necessary evil, an unavoidable detour.
For I will be entering, for the first time since early 2002, the realm of radiation oncology.
We are looking for pain abatement and bone preservation. My femur was calling out to us with a pain so fierce that it had rendered me close to defeated and the disease that had sat so long and complacent and secondary in my hips and that leg bone was suddenly being the squeaky wheel.
A very painful, squeaky wheel. So we gotta go oil it.
I have been temporarily pulled off a chemo regime that I hated and did not work. Although I would have loved to have seen lower markers, I am relieved to not having another round right now, but I am anxious to get this new "thing", this radiation approach over and done with and back to where I am known.
It was so apparent that medical records could not possibly scratch the surface in letting this new nurse and doctor know about my last 7 1/2 years. They had no idea what was not written in the charts and scans and information that was in their ridiculously thin file with my name on it. There was not enough time in that appointment, not even in the entire day, to make sure they knew who I was and what I was about.
They do not know
What my faith is like
What a great family I have
How I survived a stem-cell transplant
How many rounds of chemo I have been through
How I deal with chronic pain and acute side-effects
How many drugs I have tried and tolerated
How much I value each day
How much I love my medical team in Cary
How bad a stick I am
How bossy I can be
How I love to volunteer around those in my position
That I show dogs
That I am not only interested in increasing the number of my days but also in the quality of those days
That I am a soldier, a warrior, a flat-out life-liver.
That stepping away from my life-line, my safety net, my healers and friends at CCNC...even for
a few weeks is rough for me. I already miss them. I took up 27 minutes of Janet's time on the phone yesterday....not wanting to hang up...wanting to stay connected and close and cared for.
During the long and exhausting initial appointment at the Radiation Oncologist's yesterday,
both the nurse and the doctor asked me the same question at some point in the fact-finding.
If I had lived here (Greensboro) for over three years, why was I still being treated in Cary.
Why had I not been seeing someone locally. I wanted to answer them with everything I have just written about in today's entry. The answer to that question, which is asked of me often, is multi-faceted and partly summed up well in the words written here today. But, both times, when asked by nurse Mary and doctor Nancy, I gave the same, simple reply: Because they know me. And that was the only reply that was necessary.
"Oh Lord, you have searched me and you know me. You know when I sit and when I rise;
you perceive my thoughts from afar.......you are familiar with all my ways." Psalms 139:1-3
Tuesday, November 4, 2008
I'm on my way
I'm on my way in. In to get my blood tested. In to get a physical exam. In to figure out what has been going on with me since the middle of October. I am leaving my house and driving for an overnight stay with my friend Jennifer so I can make an 8:30 a.m. appointment with Janet.
I have had a rough week. Bottomed-out blood counts, absolute exhaustion, previously unfelt pangs and twinges, unreal bouts of leg pain that prompted a 5:30 a.m. call for help. So unlike me....so unusual...so much like the cancer patient I have never been.
For the first time in quite a while, I don't trust my body and what it is saying to me. I don't trust the scans that were made last month, I don't trust the chemo they have been trying on me. I am down trodden, worn out, discouraged and don't feel invincible. Funny how feeling bad can do that do you. Despite the great days, despite the wonderful times, despite the power we have all felt of God and positive thinking and focused attitudes.....despite what has happened and been recorded over the past year.....despite all that......all it takes is a continual barrage of symptoms and setbacks for 30 days and I have had it. I feel defeated.
But I know it is just for this moment. This window of time when I am packing my little bag to make the one and 1/2 hour trip back to Cary. Back to where I have been going at least every 14 days from the day we moved away. It has to be close to 200 trips back. Back again...not wanting to go, knowing I need to. Back where the weapons and wisdom and empathies lie. Back to where we will sit down and figure it all out for the umpteenth time.
Back to finding out if this chem combo is working and if not, kick it to the curb and regroup.
Back to where it all began and will begin again.
Back to where hope lives.
"...we who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul...." Hebrews 6:18-19
I have had a rough week. Bottomed-out blood counts, absolute exhaustion, previously unfelt pangs and twinges, unreal bouts of leg pain that prompted a 5:30 a.m. call for help. So unlike me....so unusual...so much like the cancer patient I have never been.
For the first time in quite a while, I don't trust my body and what it is saying to me. I don't trust the scans that were made last month, I don't trust the chemo they have been trying on me. I am down trodden, worn out, discouraged and don't feel invincible. Funny how feeling bad can do that do you. Despite the great days, despite the wonderful times, despite the power we have all felt of God and positive thinking and focused attitudes.....despite what has happened and been recorded over the past year.....despite all that......all it takes is a continual barrage of symptoms and setbacks for 30 days and I have had it. I feel defeated.
But I know it is just for this moment. This window of time when I am packing my little bag to make the one and 1/2 hour trip back to Cary. Back to where I have been going at least every 14 days from the day we moved away. It has to be close to 200 trips back. Back again...not wanting to go, knowing I need to. Back where the weapons and wisdom and empathies lie. Back to where we will sit down and figure it all out for the umpteenth time.
Back to finding out if this chem combo is working and if not, kick it to the curb and regroup.
Back to where it all began and will begin again.
Back to where hope lives.
"...we who have fled to take hold of the hope offered to us may be greatly encouraged. We have this hope as an anchor for the soul...." Hebrews 6:18-19
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