Alison started her chemotherapy today. It was a scary event. We just were uneducated on the process. Her port is sensitive to the touch. So, when the lady sprayed liquid-freeze on her to reduce the pain of the needle, I about died for her. The port, if you didn't know, is a round disc with a silicone membrane on top of it. It's lodged just under the skin of the chest and connected to a tube that runs underneath the skin about three inches to the site where it was inserted into her a main vein. So the whole thing is "invisible." In my mind and in Alison's, we expected an tube to portrude and end in a connector. Not so much. The nurses use a short needle, and stab it through the skin and silicone membrane where the fluid can go into the tube and into her bloodstream.
Okay, well, we got through. On another note, Alison's taken to sleeping on the love-seat, which puts me next to her on the pull-out couch. Last night she thanked me for sleeping out there. I replied, "I'd sleep out in the rain if you told me to." And I meant it. That's my attitude. Win at all costs against her cancer. Facilitate her in her fight. Keep her spirits high by supporting her and making her comfortable.
I'll end by saying CANCER SUCKS AND I HATE IT.
Monday, July 31, 2006
Wednesday, July 26, 2006
Leasing Your Teeth [update on Alison]
I've always considered my teeth as leased from the dentist. Likewise with my body from the medical doctor. I'd come in and get some routine maintenance done; he'd tell me what I need. My teeth belonged to him. He'd say and I'd do.
My perception changed as we were sitting in the doctor's office. This damned car is mine! And with Alison, it seems like we're becoming gear-heads in the home-mechanic sort of way. She is the driver and I am her crew chief. We discover new symptoms almost daily and deliberate solutions. What I am getting at is that our bodies need our decision-making more than I thought. Doctors are a last stop. And even then, they want YOU to tell them what's wrong so they can fix it.
Should you take medicine for symptom 'A' or will it pass? What does this ache mean? Should I get this cut seuchered or should I super-glue it? Okay, well maybe only I address that last one.
I laughed when I saw that book titled 'YOU: the Owner's Manual.' Now I wish they gave service manuals too. What about an overhaul manual? A tickler-file for maintenance? And how 'bout a 'quick diagnostics cheat-sheet?'
All this stemmed from the doctor asking Alison and I what our opinions were for her treatment. If they do radiation, chemo cannot be done. But if they do chemo, the body can repair itself quicker, so radiation could still be an option. Is the Sandostatin enough? He agreed it was not. The doctors don't know FOR SURE which treatment will fix her. And why would they? From the start this thing hasn't behaved properly.
So we've chosen to begin a combination of chemo-therapy drugs (see images below) along with continuing the Sandostatin injections. Tomorrow Alison will undergo a small surgery to place a portacath in her. Then we'll begin. She's also getting procrit, a red-cell booster, and two more blood transfusions tomorrow morning. Meanwhile, the Duke Oncologist still believes that the radiation therapy (I-131 MIBG) will have the best effect, and has submitted his low-dosage proposal (without stem-cell collection) to Duke's Board of Protocol. But that will take time to approve, so we're taking the opportunity to attack her cancer with chemo.
My perception changed as we were sitting in the doctor's office. This damned car is mine! And with Alison, it seems like we're becoming gear-heads in the home-mechanic sort of way. She is the driver and I am her crew chief. We discover new symptoms almost daily and deliberate solutions. What I am getting at is that our bodies need our decision-making more than I thought. Doctors are a last stop. And even then, they want YOU to tell them what's wrong so they can fix it.
Should you take medicine for symptom 'A' or will it pass? What does this ache mean? Should I get this cut seuchered or should I super-glue it? Okay, well maybe only I address that last one.
I laughed when I saw that book titled 'YOU: the Owner's Manual.' Now I wish they gave service manuals too. What about an overhaul manual? A tickler-file for maintenance? And how 'bout a 'quick diagnostics cheat-sheet?'
All this stemmed from the doctor asking Alison and I what our opinions were for her treatment. If they do radiation, chemo cannot be done. But if they do chemo, the body can repair itself quicker, so radiation could still be an option. Is the Sandostatin enough? He agreed it was not. The doctors don't know FOR SURE which treatment will fix her. And why would they? From the start this thing hasn't behaved properly.
So we've chosen to begin a combination of chemo-therapy drugs (see images below) along with continuing the Sandostatin injections. Tomorrow Alison will undergo a small surgery to place a portacath in her. Then we'll begin. She's also getting procrit, a red-cell booster, and two more blood transfusions tomorrow morning. Meanwhile, the Duke Oncologist still believes that the radiation therapy (I-131 MIBG) will have the best effect, and has submitted his low-dosage proposal (without stem-cell collection) to Duke's Board of Protocol. But that will take time to approve, so we're taking the opportunity to attack her cancer with chemo.
Tuesday, July 25, 2006
The Set-Back
Alison was in a lot of pain yesterday, but her spirits were high enough to pose for a few snapshots while she was eating gob-stoppers on the examination table.
(We have had lots of time to ourselves waiting for the doctors)My spirits were high too, thinking that we're actually going to start forward-motion against her cancer. I even wrote a little about the doctor who conducted the interview. The plan was good too, to extract her stem cells, radiate her to kill the cancer, and re-inject the stem cells to keep her healthy.
Then the stem-cell technician/doctor came in and talked to us. Here's what he said:
I do not think that collecting your stem cells is the best course of action. We'd inevitably collect cancerous cells in our extraction. Then when they killed the cancer, we'd give it back to you.
Of course, we asked questions as to why this was true, to which he responded:
Your I-131 MIBG scan lit up your entire skeleton.
Basically, there is no battle line behind which he could extract some of the good soldiers only to re-deploy them when needed. Of course, we hoped that the cancerous marrow was limited to where the bone-scan showed activity: in the pelvis and lower spine. So I asked if the special iodide could have bonded to more than the cancer. Could it have taken to the bones without it meaning that it's binding to the cancer?
No. For instance, if we were to inject you with this radioactive material, it wouldn't bind to your bones at all.
I asked about siblings donating their stem cells. (Alison's sister will be here next week) To this he said:
Samples of siblings wouldn't work; there is no exact match and in order to make it work they'd suppress her immune system, creating good conditions for a wildfire with her cancer. Stem-cell collection is always a possibility. It's easy and they can do it anytime; however, I told your oncologist that I didn't think it was a good course of action.
He thanked us and then left. Left with no resolution. Left with a big hit to our spirits. I knew he couldn't give us what we wanted. He could give no answer. The other doctors on Alison's team must now decide the best course of action.
So we drove home (multiple hours). Alison slept most of the way; she's still in a great deal of pain. I called the other doctors on the team, trying to spur them into their conference. I was trying to give them a sense of urgency. It rained on the way home, and I thought about what it all meant. Really, we learned nothing that we didn't already know. Well, except that 90 percent of Alison's marrow is cancerous. But even that is unsubstantiated. I haven't seen the pictures yet. And for me, seeing is believing. Our Duke Oncologist HAD warned us that the ABMT center may not view Alison as a good case. Though we didn't learn anything, and we technically knew all they told us, I still perceived the engagement as a set-back.
So we'll let you know what happens from here.
(We have had lots of time to ourselves waiting for the doctors)My spirits were high too, thinking that we're actually going to start forward-motion against her cancer. I even wrote a little about the doctor who conducted the interview. The plan was good too, to extract her stem cells, radiate her to kill the cancer, and re-inject the stem cells to keep her healthy.
Then the stem-cell technician/doctor came in and talked to us. Here's what he said:
I do not think that collecting your stem cells is the best course of action. We'd inevitably collect cancerous cells in our extraction. Then when they killed the cancer, we'd give it back to you.
Of course, we asked questions as to why this was true, to which he responded:
Your I-131 MIBG scan lit up your entire skeleton.
Basically, there is no battle line behind which he could extract some of the good soldiers only to re-deploy them when needed. Of course, we hoped that the cancerous marrow was limited to where the bone-scan showed activity: in the pelvis and lower spine. So I asked if the special iodide could have bonded to more than the cancer. Could it have taken to the bones without it meaning that it's binding to the cancer?
No. For instance, if we were to inject you with this radioactive material, it wouldn't bind to your bones at all.
I asked about siblings donating their stem cells. (Alison's sister will be here next week) To this he said:
Samples of siblings wouldn't work; there is no exact match and in order to make it work they'd suppress her immune system, creating good conditions for a wildfire with her cancer. Stem-cell collection is always a possibility. It's easy and they can do it anytime; however, I told your oncologist that I didn't think it was a good course of action.
He thanked us and then left. Left with no resolution. Left with a big hit to our spirits. I knew he couldn't give us what we wanted. He could give no answer. The other doctors on Alison's team must now decide the best course of action.
So we drove home (multiple hours). Alison slept most of the way; she's still in a great deal of pain. I called the other doctors on the team, trying to spur them into their conference. I was trying to give them a sense of urgency. It rained on the way home, and I thought about what it all meant. Really, we learned nothing that we didn't already know. Well, except that 90 percent of Alison's marrow is cancerous. But even that is unsubstantiated. I haven't seen the pictures yet. And for me, seeing is believing. Our Duke Oncologist HAD warned us that the ABMT center may not view Alison as a good case. Though we didn't learn anything, and we technically knew all they told us, I still perceived the engagement as a set-back.
So we'll let you know what happens from here.
Thursday, July 20, 2006
The Art of Angling
The pond here has three sides that are accessable. The fourth side is dense marsh and forest. Dense and unyielding. I find it strange that there is no current. I am used to the tides. I'm soothed by the water keeping time. Specific conditions become commodities: it's not a given that you'll have low tides as the sun rises. The time the river keeps is all it's own.
This water's power is in its weight. The conditions are constant. It's easier. There is a power within both waters though. The fish. They're strong and willing. There is an economy of movement in their bodies that is subtle but recognizable. Each twist, stretch, or flutter produces an effect that they engineer.
They intent every movement. It's precise. They're in control all the way.
Last night I fished a purple plastic worm. This worm is the worm I grew up fishing; my grandfather told me there was nothing like it. The kind and type are more specific than I'll describe to you here, but I can tell you that it has three hooks. One is at the tail. One is in the middle. And one rest about an inch from the front. All told it measures six inches. I reel slowly and randomly. The worm turns over itself as a load of laundry does in the dryer. I can feel the worm's enticing turn.
I know why we fish. It's not to catch the fish alone. It's not to be outside. When you're playing a luer through a cast you are simply aware. You can feel the sun's position.
Your ears are your eyes. They see the wind.
Your eyes are your hands. They feel the waters surface and help traverse the terrain below.
Your hands are your ears. They listen for movement in the line.
I suppose if you are taught to fish when you're young, you learn this sensitivity. You learn that you don't have to think. Atleast not about the things that you'd normally think about. While fishing, a fisherman doesn't think about bills, love, food, toys, life, or whatever he/she may think about on the way home. There is no internal dialogue; there's only a concentrated dance with the water.
Maybe that's why it's not so common to become a fisherman later in life. And maybe that's why some kids don't take to fishing. They're simply unable to put down their life and pick up the pole.
Anyways, I got off the point there. Feel the fish's hit on the luer. They've approached and sunk into their movement of attack. This attack is simple but different by species. A bass hits the worm in an envelopment.
It trails, veers off and attacks from the front/side. It always gets hooked on the first of three hooks. Bluegill, on the other hand, chase the worm. They attack in-chase, simply over-running the worm, as if content to take the mere rear portion of it. I reel them up on the last hook each time. Always. They're programmed that way.
Fish are amazing creatures. As is every small habitat in which they dwell. The most amazing part is the delicate balance of life. Disruptions in their habitat are temporary. Disruptions are like kicking rocks down a never-ending staircase. Each rock always finds a new step to balance on. Each tiny habitat is it's own staircase with its own balance. A fishermen understands this balance as it pertains to the fish. He/she understands their preferred terrain, their methods of attack, and their location in respect to weather, light, and water temperature.
I am not a good fisherman. But I love to fish. I love thinking about them and finding myself hearing with my hands. It must take a lifetime to understand everything that there is to know about finding them underneath the water. I only understand the feeling of it.
This water's power is in its weight. The conditions are constant. It's easier. There is a power within both waters though. The fish. They're strong and willing. There is an economy of movement in their bodies that is subtle but recognizable. Each twist, stretch, or flutter produces an effect that they engineer.
They intent every movement. It's precise. They're in control all the way.
Last night I fished a purple plastic worm. This worm is the worm I grew up fishing; my grandfather told me there was nothing like it. The kind and type are more specific than I'll describe to you here, but I can tell you that it has three hooks. One is at the tail. One is in the middle. And one rest about an inch from the front. All told it measures six inches. I reel slowly and randomly. The worm turns over itself as a load of laundry does in the dryer. I can feel the worm's enticing turn.
I know why we fish. It's not to catch the fish alone. It's not to be outside. When you're playing a luer through a cast you are simply aware. You can feel the sun's position.
Your ears are your eyes. They see the wind.
Your eyes are your hands. They feel the waters surface and help traverse the terrain below.
Your hands are your ears. They listen for movement in the line.
I suppose if you are taught to fish when you're young, you learn this sensitivity. You learn that you don't have to think. Atleast not about the things that you'd normally think about. While fishing, a fisherman doesn't think about bills, love, food, toys, life, or whatever he/she may think about on the way home. There is no internal dialogue; there's only a concentrated dance with the water.
Maybe that's why it's not so common to become a fisherman later in life. And maybe that's why some kids don't take to fishing. They're simply unable to put down their life and pick up the pole.
Anyways, I got off the point there. Feel the fish's hit on the luer. They've approached and sunk into their movement of attack. This attack is simple but different by species. A bass hits the worm in an envelopment.
It trails, veers off and attacks from the front/side. It always gets hooked on the first of three hooks. Bluegill, on the other hand, chase the worm. They attack in-chase, simply over-running the worm, as if content to take the mere rear portion of it. I reel them up on the last hook each time. Always. They're programmed that way.Fish are amazing creatures. As is every small habitat in which they dwell. The most amazing part is the delicate balance of life. Disruptions in their habitat are temporary. Disruptions are like kicking rocks down a never-ending staircase. Each rock always finds a new step to balance on. Each tiny habitat is it's own staircase with its own balance. A fishermen understands this balance as it pertains to the fish. He/she understands their preferred terrain, their methods of attack, and their location in respect to weather, light, and water temperature.
I am not a good fisherman. But I love to fish. I love thinking about them and finding myself hearing with my hands. It must take a lifetime to understand everything that there is to know about finding them underneath the water. I only understand the feeling of it.
Monday, July 17, 2006
Hello Duke, Goodbye Alyssa
Alyssa finally warmed up to me the night before she had to leave. I'm a huge dude to a 2 ft tall little girl, so it took a while.
We're on our way to Duke for a week today. We have an I-131 MIBG scan and a few other things to accomplish. Wish us luck!
Saturday, July 15, 2006
The Story
The few moments that I will tell you about get farther back in my memory everyday. Farther, yet more comforting like a pebble tossed into a pond - the pebble is left below as young eyes watch the ripples. The waves get softer and smoother, relaxing your soul.
The say a butterfly's beating wing can cause a monsoon half the world away. I'll tell you it's true. Who knew that on a snowy evening when I was 18, I would meet my future wife? (I fell off her front porch when I left that night) Thank God for the snow that broke my fall.
I think some of the same snow flakes that found new flight from under my plummeting body, were there the night I proposed beside the Christmas tree. They might have watched from the darkness outside her mom's windows. But I can't jump that far ahead in the story yet. There would be so much left to tell.
1998-2001. Three years would pass between my embarrassing first impression to her first flight to visit me in New Orleans. I was waiting outside terminal B when she caught my eyes in hers. When we hugged she noticed my shivering knees. I don't think I was the only nervous one though because she left her dress on the plane. She was to be my date on a Marine's favorite night of the year, the night of the Birthday Ball. We were 226 years old.
That weekend was the birth of 'us.' Or at least in to friends and family it seemed from then on we couldn't breathe without each other. Those four days were magical. Dinner on Lake Pontchartrain. Watching break-dancers in the French quarter. A walk through the zoo. I could feel our natural chemistry. It was as we stopped in the bird house at the zoo I remember most vividly. When I say bird house, most will think of those wooden houses on a stick in someone's back yard. Others will think of the countless (small white) treacheries that do accompany walk-through bird estuaries. I simply remember a stone bench.
The afternoon light passed through thick leaves of countless plants and trees before it showed us on that bench. I remember having her beside me when I realized I was in trouble. This is the moment, with bird songs and fluttering flights, that I realized I was in love. What was it, day three?
And then she was gone. For two more long years that was the theme. Amazing moments together followed by long droughts without. We grew as individuals and as a couple. We explored New Orleans together whenever she'd come. Our friendship supported our growing love. Hours and hours on the phone. The bumps and bruises and little victories we won were all a part of our growing process.
2003. So if I can go back to the snow flake part for a moment, the ones outside her mom's windows. I drove all day to be there with Alison. I had a ring I'd been carrying around for about a month. I could only disguise my excitement as 'wanting to do Christmas.' I think she knew. I'm admittedly no good at surprises, and I am no good at waiting for them. I remember being no more nervous in any few moments in my entire life. Kneeling before her as she sat on the couch, I offered my love for the rest of our lives. I asked for the honor of hers.
The say a butterfly's beating wing can cause a monsoon half the world away. I'll tell you it's true. Who knew that on a snowy evening when I was 18, I would meet my future wife? (I fell off her front porch when I left that night) Thank God for the snow that broke my fall.
I think some of the same snow flakes that found new flight from under my plummeting body, were there the night I proposed beside the Christmas tree. They might have watched from the darkness outside her mom's windows. But I can't jump that far ahead in the story yet. There would be so much left to tell.
1998-2001. Three years would pass between my embarrassing first impression to her first flight to visit me in New Orleans. I was waiting outside terminal B when she caught my eyes in hers. When we hugged she noticed my shivering knees. I don't think I was the only nervous one though because she left her dress on the plane. She was to be my date on a Marine's favorite night of the year, the night of the Birthday Ball. We were 226 years old.
That weekend was the birth of 'us.' Or at least in to friends and family it seemed from then on we couldn't breathe without each other. Those four days were magical. Dinner on Lake Pontchartrain. Watching break-dancers in the French quarter. A walk through the zoo. I could feel our natural chemistry. It was as we stopped in the bird house at the zoo I remember most vividly. When I say bird house, most will think of those wooden houses on a stick in someone's back yard. Others will think of the countless (small white) treacheries that do accompany walk-through bird estuaries. I simply remember a stone bench.
The afternoon light passed through thick leaves of countless plants and trees before it showed us on that bench. I remember having her beside me when I realized I was in trouble. This is the moment, with bird songs and fluttering flights, that I realized I was in love. What was it, day three?
And then she was gone. For two more long years that was the theme. Amazing moments together followed by long droughts without. We grew as individuals and as a couple. We explored New Orleans together whenever she'd come. Our friendship supported our growing love. Hours and hours on the phone. The bumps and bruises and little victories we won were all a part of our growing process.
2003. So if I can go back to the snow flake part for a moment, the ones outside her mom's windows. I drove all day to be there with Alison. I had a ring I'd been carrying around for about a month. I could only disguise my excitement as 'wanting to do Christmas.' I think she knew. I'm admittedly no good at surprises, and I am no good at waiting for them. I remember being no more nervous in any few moments in my entire life. Kneeling before her as she sat on the couch, I offered my love for the rest of our lives. I asked for the honor of hers.
Our marriage has been the greatest thing that ever happened to us. I think what really makes us work is our willingness to give. We've made each other our top priorities. We're good friends, great lovers, and I know she'd do anything for me. She knows I will do the same.
Thanks, Alison, for being with me through thick and thin. I can't wait for tomorrow!
Thanks, Alison, for being with me through thick and thin. I can't wait for tomorrow!
Thursday, July 13, 2006
Gardens and Toddlers
Mom and I have been working on my 'curb appeal' this week. I thought this picture, featuring my neice Alyssa, could illustrate a new corner of the house. Isn't she cute? This week the house has been echoing "kiibai-chu" (kitty bite you) and "tom bum" (tom thumb).
Sunday, July 9, 2006
Naval Shortcomings
At first I was against publishing this story. But I think it's best to make it all known.
You know all those questionaires patients fill out before they're seen? All the historical questions the physicians ask? Well a few of them were about Alison's biliary tract, abdominal pain, and hard spots in the abdomen. Though obscure, Alison and I remembered that about a year ago a doctor at the Naval Hospital found a 'hard spot' in the right side of Alison's belly. We didn't even remember at first, but Alison remembered the doctor sending her for an abdominal x-ray before she left that day. The Oncologist took that news as good and bad. Bad that they didn't follow up or correctly diagnose, but good that it meant the tumor wasn't as fast as he initially had to assume.
So last week, the doctor asked that we take regular x-ray of her hips at the Naval Hospital to look for breaks again in Alison's hips. She was hurting bad. I took the opportunity while Alison was under the machine, to find outwhat the xray she took about a year ago looked like. I wanted to know if it was true: that we missed an opportunity to catch it.
So I asked the nurse for her historicals. There was nothing from last year. I asked if she had anything before June of this year. I was thinking it could have been spring of '06. The nurse replied that she did have an abdominal x-ray DATED 15 OCTOBER 2004!
That's right, 04.
No abnormalities were noted in the XRAY, which really wouldn't have displayed a mass unless it was a big metal ball she swallowed. As soon as Isaw the XRAY I wanted to see the doctor's notes. I wanted to know why Alison remembered the doctor saying it was just stool.
The clerk in patient records let us see the record. She found that the abdominal abnormality was a chicken scratch on the checkup form, and there was no other about it. No follow up. No comment on the XRAY.Nothing.
Alison discovered by reading further, that she'd noted back pain three months later, and had had that complaint multiple times that year, leading up to our ER visit during Christmas. I even bought her a Posture-Pedic bed, because the doctor said she was sleeping with poor posture.
I believe this could have been caught back in October of 2004. The doctor should have sent her for a CT scan. An x-ray was not appropriate. The doctor knew it. She had to. She didn't send her for a CT scan because the hospital doesn't offer that service! She didn't even follow up a week later to make sure Alison had passed the stool. And finally, she didn't check for that stool when Alison came back in with back pain.
So here's what I'm left wondering: how many other people will suffer our same fate? How many other doctors will fail to send a patient with a hard spot in their abdomen to a scan that might reveal what it is? How many other doctors will fail to schedule a check-up later to ensure that their 'stool guess' was accurate? And finally, how many other people will have a stage-4 cancer before it's caught? Does it need to repeat itself?
I know this is me venting. But there's a problem there. It may be a policy not to send a patient out in town if at all possible. Maybe if they change a policy or two, someone else be caught at an earlier stage. Maybe this will make patients more cautious with Navy Medicine and their personal health. Maybe someone else will ask a question, Navy or not, to make the doctor do a little more, when they could hold their peace. Maybe 'simple trust' that they're always right and always atleast follow up is not enough. There are other short-comings that I've noticed. But I'm getting better at heading them off at the pass.
You know all those questionaires patients fill out before they're seen? All the historical questions the physicians ask? Well a few of them were about Alison's biliary tract, abdominal pain, and hard spots in the abdomen. Though obscure, Alison and I remembered that about a year ago a doctor at the Naval Hospital found a 'hard spot' in the right side of Alison's belly. We didn't even remember at first, but Alison remembered the doctor sending her for an abdominal x-ray before she left that day. The Oncologist took that news as good and bad. Bad that they didn't follow up or correctly diagnose, but good that it meant the tumor wasn't as fast as he initially had to assume.
So last week, the doctor asked that we take regular x-ray of her hips at the Naval Hospital to look for breaks again in Alison's hips. She was hurting bad. I took the opportunity while Alison was under the machine, to find outwhat the xray she took about a year ago looked like. I wanted to know if it was true: that we missed an opportunity to catch it.
So I asked the nurse for her historicals. There was nothing from last year. I asked if she had anything before June of this year. I was thinking it could have been spring of '06. The nurse replied that she did have an abdominal x-ray DATED 15 OCTOBER 2004!
That's right, 04.
No abnormalities were noted in the XRAY, which really wouldn't have displayed a mass unless it was a big metal ball she swallowed. As soon as Isaw the XRAY I wanted to see the doctor's notes. I wanted to know why Alison remembered the doctor saying it was just stool.
The clerk in patient records let us see the record. She found that the abdominal abnormality was a chicken scratch on the checkup form, and there was no other about it. No follow up. No comment on the XRAY.Nothing.
Alison discovered by reading further, that she'd noted back pain three months later, and had had that complaint multiple times that year, leading up to our ER visit during Christmas. I even bought her a Posture-Pedic bed, because the doctor said she was sleeping with poor posture.
I believe this could have been caught back in October of 2004. The doctor should have sent her for a CT scan. An x-ray was not appropriate. The doctor knew it. She had to. She didn't send her for a CT scan because the hospital doesn't offer that service! She didn't even follow up a week later to make sure Alison had passed the stool. And finally, she didn't check for that stool when Alison came back in with back pain.
So here's what I'm left wondering: how many other people will suffer our same fate? How many other doctors will fail to send a patient with a hard spot in their abdomen to a scan that might reveal what it is? How many other doctors will fail to schedule a check-up later to ensure that their 'stool guess' was accurate? And finally, how many other people will have a stage-4 cancer before it's caught? Does it need to repeat itself?
I know this is me venting. But there's a problem there. It may be a policy not to send a patient out in town if at all possible. Maybe if they change a policy or two, someone else be caught at an earlier stage. Maybe this will make patients more cautious with Navy Medicine and their personal health. Maybe someone else will ask a question, Navy or not, to make the doctor do a little more, when they could hold their peace. Maybe 'simple trust' that they're always right and always atleast follow up is not enough. There are other short-comings that I've noticed. But I'm getting better at heading them off at the pass.
Saturday, July 8, 2006
My Pretty Wife
Today I thought, 'you know, for being sick, Alison's as stunning as any woman I could ever dream of.'
When I met her 8 years ago, I thought she had amazing eyes and a great deal of sass. When I re-met her 5 years ago, I discovered I was right. But she was blossoming into a lovely woman. I instantly fell in love with her. She even has cute ears and feet. Who has cute ears? And that button-nose just killed me. Alison has a link of our story, but it only grazes the deeper love story that really ensued. I'm no writer, but I'm working on putting what really went down into words. We've grown together, strengthening each other a long the way. Standby for more.
And an update: The Duke Pathologist agrees that hers is a 'well-differentiated Neuroendocrine tumor.' I've been researching the tar out of it. It seems she doesn't display the flushing and chronic diarrhea because her tumor isn't 'functioning.' Hopefully we'll find out more this week.
When I met her 8 years ago, I thought she had amazing eyes and a great deal of sass. When I re-met her 5 years ago, I discovered I was right. But she was blossoming into a lovely woman. I instantly fell in love with her. She even has cute ears and feet. Who has cute ears? And that button-nose just killed me. Alison has a link of our story, but it only grazes the deeper love story that really ensued. I'm no writer, but I'm working on putting what really went down into words. We've grown together, strengthening each other a long the way. Standby for more.
And an update: The Duke Pathologist agrees that hers is a 'well-differentiated Neuroendocrine tumor.' I've been researching the tar out of it. It seems she doesn't display the flushing and chronic diarrhea because her tumor isn't 'functioning.' Hopefully we'll find out more this week.
Thursday, July 6, 2006
Beautiful Adaptation
I think that strength is only possible if you're 
adapted to your environment and your set of circumstances. Sometimes we need to cut the fat in order to adapt. Sometimes we need to insulate ourselves with some more. I am so proud of Alison for her change today- cutting her hair. Not only did it say to me that she is willing to adapt in order to win this battle we're in, but it also gave me a real chance to admire her beauty. I admire her everyday when her eyes are closed. Each time she smiles. But today I rediscovered her eyes. Her Neck. Her cute little nose. Take a peek, and tell me she's not a classic beauty! I'm really lucky.
adapted to your environment and your set of circumstances. Sometimes we need to cut the fat in order to adapt. Sometimes we need to insulate ourselves with some more. I am so proud of Alison for her change today- cutting her hair. Not only did it say to me that she is willing to adapt in order to win this battle we're in, but it also gave me a real chance to admire her beauty. I admire her everyday when her eyes are closed. Each time she smiles. But today I rediscovered her eyes. Her Neck. Her cute little nose. Take a peek, and tell me she's not a classic beauty! I'm really lucky.
Tuesday, July 4, 2006
Duke University Medical Center
I like to write a little story before I divulge the true update status, so here's my little story:
We made the long trek to DUMC yesterday, arriving at about a quarter till 3. I'd looked at the map and determined that the 'Main Entrance' was the entrance closest to the clinic (which I understood to be in the hospital ::Cough, Cough::). We parked in the garage across from the hospital, wheel-chaired Alison up, and went down the elevator to the tunnel that connects the garage to the building. All was well. However, once we were in the building and I started going down the halls to where I thought Surgical Oncology was, the building started looking less and less like my map. Finally we got to this elevated sidewalk - think Ewok bridges - that connected building to building to building. I realized that the hospital is more than meets the eye.
Of course, Alison knew I was wrong and let me know it.
We made the appointment on time, but I had to jog while pushing the wheel chair down the Ewok bridge. If you ever go to Duke Hospital, know that you're in the hospital, not the clinic.
Here's the update:
We know less now than we did before we saw the doctor. He wanted his own pathologist to re-examine the bone marrow biopsy. He said Alison's tumor just wasn't acting like, didn't have the normal characteristics and symptoms, of Carcinoid Tumors. The profile just didn't fit. His advice in terms of treating her cancer was even more vague. No chemo yet since her red-blood cells are down and her good marrow is working overtime anyways. The chemo would do more harm than good. No radiation therapy yet. He did say we could begin injections of sandostatin. We start Wednesday.
His plan is to get to the bottom of this case by testing her with a I-131-MIBG scan. He also wanted to do a CT guided biopsy of the tumor. And finally, he's talking to their stem cell lab (remember the Bush administration hot topic(though his beef was with Embryonic)) in regards to taking her core sample. They'd withdraw blood from the left arm, filter the blood to extract certain cells, and inject her blood back into her right arm. The cells they collect could be frozen for future use fighting the effects of chemotherapy and also to reduce the reliance upon sibling bone marrow transplants, should it come to that.
The thing I took away from the meeting was his explanation of how to read the CT and bone scan. He interpreted the pictures for us. A few posts ago I posted a picture of Alison's skeleton. If you look at that picture, note the extra dark hips (extra white really but I put it in negative for the site), extra dark shoulders, lower spinal chord, top of the skull, and a little in the rib cage. That darkness/lightness indicates more active bone marrow. Active with cancer? Possibly, but more likely is that her bone marrow is working extra hard to keep her healthy. That's a cause for her severe pain in all the aforementioned places. The other cause can be seen in the CT scan:
Note the candy-cane ruler in the lower left. That measures her tumor. What I didn't understand before is that the tumor isn't just behind the candy cane. It's the grey mass that extends below, wraps around the spinal chord, and extends into her right side. That overlapping of the lumbars is probably hitting some nerves.
So we know nothing and a lot at the same time. We'll hear from the Duke Doctor by Friday. I'll keep you posted!
We made the long trek to DUMC yesterday, arriving at about a quarter till 3. I'd looked at the map and determined that the 'Main Entrance' was the entrance closest to the clinic (which I understood to be in the hospital ::Cough, Cough::). We parked in the garage across from the hospital, wheel-chaired Alison up, and went down the elevator to the tunnel that connects the garage to the building. All was well. However, once we were in the building and I started going down the halls to where I thought Surgical Oncology was, the building started looking less and less like my map. Finally we got to this elevated sidewalk - think Ewok bridges - that connected building to building to building. I realized that the hospital is more than meets the eye.
Of course, Alison knew I was wrong and let me know it.
We made the appointment on time, but I had to jog while pushing the wheel chair down the Ewok bridge. If you ever go to Duke Hospital, know that you're in the hospital, not the clinic.
Here's the update:
We know less now than we did before we saw the doctor. He wanted his own pathologist to re-examine the bone marrow biopsy. He said Alison's tumor just wasn't acting like, didn't have the normal characteristics and symptoms, of Carcinoid Tumors. The profile just didn't fit. His advice in terms of treating her cancer was even more vague. No chemo yet since her red-blood cells are down and her good marrow is working overtime anyways. The chemo would do more harm than good. No radiation therapy yet. He did say we could begin injections of sandostatin. We start Wednesday.
His plan is to get to the bottom of this case by testing her with a I-131-MIBG scan. He also wanted to do a CT guided biopsy of the tumor. And finally, he's talking to their stem cell lab (remember the Bush administration hot topic(though his beef was with Embryonic)) in regards to taking her core sample. They'd withdraw blood from the left arm, filter the blood to extract certain cells, and inject her blood back into her right arm. The cells they collect could be frozen for future use fighting the effects of chemotherapy and also to reduce the reliance upon sibling bone marrow transplants, should it come to that.
The thing I took away from the meeting was his explanation of how to read the CT and bone scan. He interpreted the pictures for us. A few posts ago I posted a picture of Alison's skeleton. If you look at that picture, note the extra dark hips (extra white really but I put it in negative for the site), extra dark shoulders, lower spinal chord, top of the skull, and a little in the rib cage. That darkness/lightness indicates more active bone marrow. Active with cancer? Possibly, but more likely is that her bone marrow is working extra hard to keep her healthy. That's a cause for her severe pain in all the aforementioned places. The other cause can be seen in the CT scan:
Note the candy-cane ruler in the lower left. That measures her tumor. What I didn't understand before is that the tumor isn't just behind the candy cane. It's the grey mass that extends below, wraps around the spinal chord, and extends into her right side. That overlapping of the lumbars is probably hitting some nerves.
So we know nothing and a lot at the same time. We'll hear from the Duke Doctor by Friday. I'll keep you posted!
Monday, July 3, 2006
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