So, today I went out for what will likely be my last bicycle ride for several months. There was a modest wind, but the sun was out intermittently and it wasn't wet or too cold. I was joined by a friend that I have been wanting to ride with for about a year, and that was in itself a satisfying reason to get into the saddle.
We did not go especially far, and I thought that the route that I chose was a good mix of rolling hills and flat sections. It ended up being about 25 miles, and I enjoyed the exercise and the company. My familiarity with the route was helpful, but one event really shocked me. We rode up a short steep hill, with a sharp right turn at the top, and just as we were starting down the other side, a large Rottweiler charged out of a driveway on our right straight toward me.
It happened so fast all I could do was yell, and then it literally plowed headfirst into my right calf. It was barking loudly, but hit me with its head and then fell over onto its back, stunned. Somehow, the only thing that I experienced was a slight wobble and my chain popped off the front crank. As I had started downhill already, I coasted until the next little rise slowed me to a stop - far beyond the apparent interest of the dog. I put the chain back on, and we continued on our way.
My friend saw all of this from slightly behind, and could not believe that nothing else happened to me or the bike. I too wonder how many amazingly lucky details aligned so that I was not hurt in any way, nor was my bike damaged. If the dog had chosen to attack my friend instead of me, it might very well have ended very differently (she is smaller than me, and was not going very fast since she was behind and had not started down the hill yet). If the dog's mouth had been open, I might have suffered all kinds of bloody damage - with untold ramifications for our family trip to Orlando and for chemotherapy. And if the dog's big head had hit ANY OTHER PART OF MY BIKE, I would certainly have fallen and...
So what... Well, I am thinking that this event is analogous to some lousy cancer events over the past several years. First, there was a colonoscopy that discovered a tumor (which was a much bigger deal in the end than we thought). Then there was a colon cancer study that I qualified for, which required more thorough treatments and more frequent follow-up but connected me with great doctors and caregivers in Salem and Portland. And now an elevated CEA level that allowed us to detect liver tumors long before they made their sorry presence known via symptoms. First the diagnosis of cancer andnow its metastasis are like a crazy dog charging at my body - but with fortuitous outcomes.
Rottweilers have gotten a bit of a bad rap in the US from the media and in movies. From Wikipedia - "While still used in herding, Rottweilers are now also used in search and rescue, as guide dogs for the blind, as guard or police dogs, and in other roles. The Rottweiler is good-natured, placid in basic disposition, very devoted, obedient, biddable and eager to work. Their appearance is natural and rustic, their behaviour self-assured, steady and fearless. It has an inherent desire to protect home and family, and is an intelligent dog of extreme hardness and adaptability with a strong willingness to work, making them especially suited as a companion, guardian and general all-purpose dog." The one I encountered today was doing its best, in the way it understood. I do not blame the dog (though I would like to have a short chat with its owner).
That said, I feel like I am blessed with a team of Rottweilers.
Sunday, February 6, 2011
Saturday, February 5, 2011
Light and tunnels and light
I received all kinds of news this week - news that showed us all what is going on inside me and illuminated a path forward. It all started with Monday's official confirmation that there do not appear to be any bone metastases, and all we need to concern ourselves with is the two liver tumors. So, Tuesday was consumed with outpatient surgery to re-implant a catheter device in my chest that will make it easier (for all) to give my chemotherapy, draw blood for tests, and insert contrast for the many CT scans that I expect to have. For reasons both medical (no existing scar tissue in the vein near my clavicle) and aesthetic (now I will have matching scars on each side of my upper chest), we went with the left side this time. I am not sure that anyone really want to see the yellow green bruise below the port, but Dr. Durning did a fine job!
Wednesday was intended to be a recovery day, with Vicodin making me quite a jolly and nearly pain-free fellow. But, double-bonus for Ed, an appointment opened up in the afternoon with the surgical oncologist at OHSU (Dr. Kevin Billingsley)! Karen drove me up there and we talked to three different doctors (an intern, a resident, and the surgeon) about my case. So many details were reviewed, and reviewed, and reviewed. They wanted to be sure that we talked about the previous cancer treatments, and the current situation, and the risks, and the prognosis. Highlights: (1) no need to do a tumor biopsy, as the information gained would not change the treatment plan at all and we will get that information from the tumors themselves after they are removed; (2) exercise (especially cycling) is good for my well-being during chemo, and should be pursued - but no competitions; (3) chemo will probably be 3-4 months, to get the tumors smaller prior to surgery; and (4) pre-chemo family vacation to Orlando is a good idea.
Thursday was a quiet day, and I enjoyed taking Julia to swimming practice. She really is a good swimmer, and her exercise has a calming influence on all of us. :)
Friday, then, was my follow-up meeting with Dr. Tiffany. She was happily surprised that we had seen Dr. Billingsley, and we discussed all of the details of everything that is going on. I received good news that my genetic markers indicate that I am a candidate for cetuximab (a biological agent that blocks epithelial growth factor receptors on tumor cells - and this helps to discourage their ability to grow). Key side effects are rash (usually on the torso and face - looks like acne!) and diarrhea. Both of those effects will be eased by using Doxycycline and Imodium. The cetuximab will be administered every week, while the FOLFIRI (5-FU, Leucovorin and Irinotecan) are administered every other week. We have many other drugs to manage side effects - maybe I will post about that later? And all of that chemical fun begins first thing on Feb 14.
One last detail that my oncologist is working on has to do with my slightly elevated calcium levels. Since it was not linked to bone mets, she consulted an endocrinologist to learn that I may have a very mild case of hyperparathyroidism. Nothing to worry about now, and the medical indication is to follow it closely with regular blood tests. Well, wouldn't you know it but I have a BUNCH of those scheduled over the next several months.
So, light and tunnels and light. Right now we have a lot of information that explains the blood test results, the CT, and the bone scan. We think we understand what is going on inside me, and we have a solid action plan. But I also find myself feeling like I am going into another tunnel, one with walls that are dripping chemicals, with a path that is strewn with anxiety, sleeplessness, side effects, and cold. A myriad of unlimited opportunities have collapsed to a single path forward for the next several months (if not a whole year), and I am dragging many dear, loved companions with me through the tunnel. I do not know how to thank everyone enough for seeing the tunnel and wanting to walk with me. If sainthood was not proposed for you all in 2007, that cannot be true after 2011.
And there is a small light - way off in the distance - at the end of this tunnel. It seems nearly invisible today, but I know it is there. Thanks to all for helping me to see that light.
Wednesday was intended to be a recovery day, with Vicodin making me quite a jolly and nearly pain-free fellow. But, double-bonus for Ed, an appointment opened up in the afternoon with the surgical oncologist at OHSU (Dr. Kevin Billingsley)! Karen drove me up there and we talked to three different doctors (an intern, a resident, and the surgeon) about my case. So many details were reviewed, and reviewed, and reviewed. They wanted to be sure that we talked about the previous cancer treatments, and the current situation, and the risks, and the prognosis. Highlights: (1) no need to do a tumor biopsy, as the information gained would not change the treatment plan at all and we will get that information from the tumors themselves after they are removed; (2) exercise (especially cycling) is good for my well-being during chemo, and should be pursued - but no competitions; (3) chemo will probably be 3-4 months, to get the tumors smaller prior to surgery; and (4) pre-chemo family vacation to Orlando is a good idea.
Thursday was a quiet day, and I enjoyed taking Julia to swimming practice. She really is a good swimmer, and her exercise has a calming influence on all of us. :)
Friday, then, was my follow-up meeting with Dr. Tiffany. She was happily surprised that we had seen Dr. Billingsley, and we discussed all of the details of everything that is going on. I received good news that my genetic markers indicate that I am a candidate for cetuximab (a biological agent that blocks epithelial growth factor receptors on tumor cells - and this helps to discourage their ability to grow). Key side effects are rash (usually on the torso and face - looks like acne!) and diarrhea. Both of those effects will be eased by using Doxycycline and Imodium. The cetuximab will be administered every week, while the FOLFIRI (5-FU, Leucovorin and Irinotecan) are administered every other week. We have many other drugs to manage side effects - maybe I will post about that later? And all of that chemical fun begins first thing on Feb 14.
One last detail that my oncologist is working on has to do with my slightly elevated calcium levels. Since it was not linked to bone mets, she consulted an endocrinologist to learn that I may have a very mild case of hyperparathyroidism. Nothing to worry about now, and the medical indication is to follow it closely with regular blood tests. Well, wouldn't you know it but I have a BUNCH of those scheduled over the next several months.
So, light and tunnels and light. Right now we have a lot of information that explains the blood test results, the CT, and the bone scan. We think we understand what is going on inside me, and we have a solid action plan. But I also find myself feeling like I am going into another tunnel, one with walls that are dripping chemicals, with a path that is strewn with anxiety, sleeplessness, side effects, and cold. A myriad of unlimited opportunities have collapsed to a single path forward for the next several months (if not a whole year), and I am dragging many dear, loved companions with me through the tunnel. I do not know how to thank everyone enough for seeing the tunnel and wanting to walk with me. If sainthood was not proposed for you all in 2007, that cannot be true after 2011.
And there is a small light - way off in the distance - at the end of this tunnel. It seems nearly invisible today, but I know it is there. Thanks to all for helping me to see that light.
Tuesday, February 1, 2011
PowerPort particulars
Today featured a trip to the Salem Hospital for the implantation of a semi-permanent IV device. I blogged about this the first time through, but practice has changed some over the last few years. For starters, we are now more aware of the risks associated with bacteria that are resistant to antibiotics. That means that part of the surgical prep involves two showers with "Hibiclens" (chlorhexidine gluconate solution 4.0%) - one the night before surgery and one in the morning. It also means a lot of fresh towels and clean linens. Instructions include: wash your entire body from the neck down, spending an extra 2 minutes on the procedure site; do not use Hibiclens in your eyes, ears, mouth, nose, or genital area (ummm, duh?); and do not use Hibiclens if you are allergic to the product (hmmm...). I was also told to not eat or drink after midnight - so of course I was parched all night long and struggled to sleep.
The intake process was pretty simple, and I was even shadowed by a "lean" transformation analyst - who was trying to get a sense of the patient experience for service improvement at the hospital. She was very interesting to talk to, and it turned out that we had both done some "hard time" on Kodiak Island. The world is a very small place. :)
This time I did not have a general anesthetic - opting for "managed anesthetic care" where I did not have a breathing tube. I could not tell the difference at all, though the anesthesiologist told me that I was only "out" for a couple of minutes while the port line was actually inserted into the vein near my left clavicle. I woke up in recovery, got dressed, took my wheelchair ride to the van, and went home. C'est finis.
My shoulder and upper chest are quite sore (Vicodin has been my friend this afternoon and evening), and I slept most of the day. Our kitten has been my constant companion, and is becoming quite the lap cat. For my book club boys - I carefully inspected the pills to ensure they matched the label and the Patient Information Leaflet ("this medicine is a white, oblong-shaped, scored tablet imprinted with M357 on one side").
The intake process was pretty simple, and I was even shadowed by a "lean" transformation analyst - who was trying to get a sense of the patient experience for service improvement at the hospital. She was very interesting to talk to, and it turned out that we had both done some "hard time" on Kodiak Island. The world is a very small place. :)
This time I did not have a general anesthetic - opting for "managed anesthetic care" where I did not have a breathing tube. I could not tell the difference at all, though the anesthesiologist told me that I was only "out" for a couple of minutes while the port line was actually inserted into the vein near my left clavicle. I woke up in recovery, got dressed, took my wheelchair ride to the van, and went home. C'est finis.
My shoulder and upper chest are quite sore (Vicodin has been my friend this afternoon and evening), and I slept most of the day. Our kitten has been my constant companion, and is becoming quite the lap cat. For my book club boys - I carefully inspected the pills to ensure they matched the label and the Patient Information Leaflet ("this medicine is a white, oblong-shaped, scored tablet imprinted with M357 on one side").
Monday, January 31, 2011
Looks good (not to be confused with "good looks")
So, that is the succinct summary of my bone scan report, as communicated to me by my surgeon when he called this morning to schedule my new PowerPort. He thought tomorrow (2/1/11) at 9am would work, and wondered if that would fit my schedule. :-) Nothing quite like moving quickly! So, I report to the OR tomorrow at 7:30am. The port will be installed in my left upper chest, and we will use that device to ease delivery of chemotherapy drugs and CT scan contrast agents to my heart for whole-body redistribution. These things are SO MUCH easier than the arm-poke method.
What happens after that? Well, I take a nap and have a sore chest. I schedule and attend a consultative meeting with the liver surgeon at OHSU, and then the first rounds of chemo begin. He will be closely monitoring the effect of the chemo on the tumors... we want them to shrink, but not too much. Then we resection those bad guys. Then we bathe my insides in more chemicals. I will talk in some detail about the chemicals once I know which ones we are using.
Last tidbit... We are going to Orlando next week, prior to the beginning of chemo. I want to see Harry Potter World with Julia and Karen before the chemo begins, and we are going to Cape Canaveral too. I expect to ride every roller coaster, and drink some butter beer, and be silly. I think my girls deserve some fun before we dive back into chemotherapy hell again. We will be figuring out routines, and will work our way through the next several months. As of today, my outlook looks good.
Peace.
What happens after that? Well, I take a nap and have a sore chest. I schedule and attend a consultative meeting with the liver surgeon at OHSU, and then the first rounds of chemo begin. He will be closely monitoring the effect of the chemo on the tumors... we want them to shrink, but not too much. Then we resection those bad guys. Then we bathe my insides in more chemicals. I will talk in some detail about the chemicals once I know which ones we are using.
Last tidbit... We are going to Orlando next week, prior to the beginning of chemo. I want to see Harry Potter World with Julia and Karen before the chemo begins, and we are going to Cape Canaveral too. I expect to ride every roller coaster, and drink some butter beer, and be silly. I think my girls deserve some fun before we dive back into chemotherapy hell again. We will be figuring out routines, and will work our way through the next several months. As of today, my outlook looks good.
Peace.
Sunday, January 30, 2011
Books
I have been surrounded by books my whole life. From the moment I have distinct memories of places, we have always had books around our homes And since my Dad helped to manage university BOOKstores, they were always a backdrop for any conversation. This is all a good thing. I love books. They are such constant friends, ready to transport you into other minds and other perspectives.
I am a great fan of science fiction and fantasy, mostly because they begin in a reality and then move thoughtfully through that reality. All authors are skilled writers (duh!) but their gifts vary widely. Some are especially great at devising world systems, and then telling epic stories about those places. Others rely more on the human experiences of social development, but tell very interesting "alternates" to them, hinged perhaps on a subtle change to an outcome.
Of course, with an introduction like that, I could go in a dozen directions. But my intent was to talk about my little library. I have several hundred sci-fi/fantasy books. My wife has often referred to it as a part of my dowry. When we married, I sold off at least half of it, but have been building it back again. There are about 250 titles in the "already read" section, and another hundred or so in a "to be read" section. I keep that "to be read" section for the sole reason that I always want to have something that I know I will like at hand - it is a kind of reading security blanket for me. And I love me a good discussion about fantastic futures!
I expect that there will be plenty of time for reading in the next bit. I am always looking for good books to read, and participate in two book clubs already. Anyone with a good sci-fi/fantasy title to suggest? I am all ears. They help me focus on the future, and live outside the present...
I am a great fan of science fiction and fantasy, mostly because they begin in a reality and then move thoughtfully through that reality. All authors are skilled writers (duh!) but their gifts vary widely. Some are especially great at devising world systems, and then telling epic stories about those places. Others rely more on the human experiences of social development, but tell very interesting "alternates" to them, hinged perhaps on a subtle change to an outcome.
Of course, with an introduction like that, I could go in a dozen directions. But my intent was to talk about my little library. I have several hundred sci-fi/fantasy books. My wife has often referred to it as a part of my dowry. When we married, I sold off at least half of it, but have been building it back again. There are about 250 titles in the "already read" section, and another hundred or so in a "to be read" section. I keep that "to be read" section for the sole reason that I always want to have something that I know I will like at hand - it is a kind of reading security blanket for me. And I love me a good discussion about fantastic futures!
I expect that there will be plenty of time for reading in the next bit. I am always looking for good books to read, and participate in two book clubs already. Anyone with a good sci-fi/fantasy title to suggest? I am all ears. They help me focus on the future, and live outside the present...
Friday, January 28, 2011
Bone scan 101
New adventure in nuclear medicine today, and it was not too bad from a consumer's perspective. I walked over to the diagnostic radiology lab, conveniently located near our local hospital, to experience another tool in the toolkit of the oncology professional. As mentioned yesterday, my oncologist referred me here so that we can be somewhat sure that our treatment plan is oriented toward the right objective (which is hopefully those two tumor in my liver). The bone scan is meant to rule out additional mets that would not normally show up on a CT scan.
So, as I understand it, the idea is to inject the patient (aka, "Ed") with a radioactive element (Technetium-99m) that has a short half-life (6 hours) and emits a steady flow of gamma radiation that a gamma detector can detect. The technetium is carried by my bloodstream throughout my body, but it is especially attracted to the calcium in my bones. So everywhere there is blood contact with bone, a little of the technetium binds to the calcium there and emits gamma radiation until it has no energy left. More blood flowing to areas generates more technetium deposited, which then leads to more gamma radiation emitted. There is a ton of additional information on Wikipedia, should you really want to get into the science of that process. I was injected with the technetium at 10am and told to come back at 1pm for the scan. No special diets, no fluid restrictions... piece of cake.
Went back at 1pm and was asked to lie down on a gurney. The technician then gave me a cushion to support my knees (slightly bent) and two straps (one to hold my feet together and another to support my arms. He then wheeled me under the gamma detector and I took a nap (honest!) while the machine moved slowly over me. All of my bones slowly light up on the detector, and areas that have the highest concentration of technetium light up the most. The detector is very sensitive, so we will have a good picture of my skeletal health when all is said-and-done. The radiologist's report will be available on Monday.
Not too bad, really.
So, as I understand it, the idea is to inject the patient (aka, "Ed") with a radioactive element (Technetium-99m) that has a short half-life (6 hours) and emits a steady flow of gamma radiation that a gamma detector can detect. The technetium is carried by my bloodstream throughout my body, but it is especially attracted to the calcium in my bones. So everywhere there is blood contact with bone, a little of the technetium binds to the calcium there and emits gamma radiation until it has no energy left. More blood flowing to areas generates more technetium deposited, which then leads to more gamma radiation emitted. There is a ton of additional information on Wikipedia, should you really want to get into the science of that process. I was injected with the technetium at 10am and told to come back at 1pm for the scan. No special diets, no fluid restrictions... piece of cake.
Went back at 1pm and was asked to lie down on a gurney. The technician then gave me a cushion to support my knees (slightly bent) and two straps (one to hold my feet together and another to support my arms. He then wheeled me under the gamma detector and I took a nap (honest!) while the machine moved slowly over me. All of my bones slowly light up on the detector, and areas that have the highest concentration of technetium light up the most. The detector is very sensitive, so we will have a good picture of my skeletal health when all is said-and-done. The radiologist's report will be available on Monday.
Not too bad, really.
Thursday, January 27, 2011
dagnabit, muskie!
Alas, here we are again... four years out from the first roller coaster ride and I am back in line for another. It turns out that the elevated CEA levels from last week's blood test reflected two liver metastases from the colon tumor that we exorcised in early 2007. Too bad those rotten little cancer cells were resistant to the FOLFOX cocktail, eh?
So, tons of oncological fun on the near horizon. Tomorrow we have a full body bone scan to check for bone mets. For the uninitiated, "mets" is the lingo for metastases, or cancer that has spread from one organ to another place. It is possible that I have developed bone mets because, in the blood test that demonstrated an elevated CEA level, I got the bonus news that there was an elevated (barely within the upper band of normal) level of calcium in my blood. Calcium in one's blood can result from many things (including vitamins, though this is not the case for me), but we are checking to see if bone mets are the culprit for the elevated calcium. We are hoping beyond hope that this is not the case, since otherwise the metastatic colon cancer is going wild in my system and the liver tumors are the least of my problems.
If the bone scan is negative, then the next order of business is reducing the size of the liver mets. FOLFIRI is our new cocktail friend, possibly supplemented by cetuximab, a biological agent. FOLFIRI is fluorouracil (5-FU), Leucovorin (aka folic acid), and Irinotecan, and it is delivered intravenously. I will need to get another port-a-cath installed, so that they can deliver the FOLFIRI directly to my bloodstream near my heart. This cocktail will be administered every other week until the liver tumors shrink to a manageable size (as detected by CT scans). TOO MUCH FUN!
Surgical resection would happen next, followed by some more chemo to be sure there are no additional tumor-wannabes waiting around, probably with 5-FU, Leucovorin and Avastin. Maybe 2011 will end with an all-clear. Let's hope so.
In the meantime, everyone should relax, enjoy their lives, and hug their loved ones. Really, what else is there to do?
So, tons of oncological fun on the near horizon. Tomorrow we have a full body bone scan to check for bone mets. For the uninitiated, "mets" is the lingo for metastases, or cancer that has spread from one organ to another place. It is possible that I have developed bone mets because, in the blood test that demonstrated an elevated CEA level, I got the bonus news that there was an elevated (barely within the upper band of normal) level of calcium in my blood. Calcium in one's blood can result from many things (including vitamins, though this is not the case for me), but we are checking to see if bone mets are the culprit for the elevated calcium. We are hoping beyond hope that this is not the case, since otherwise the metastatic colon cancer is going wild in my system and the liver tumors are the least of my problems.
If the bone scan is negative, then the next order of business is reducing the size of the liver mets. FOLFIRI is our new cocktail friend, possibly supplemented by cetuximab, a biological agent. FOLFIRI is fluorouracil (5-FU), Leucovorin (aka folic acid), and Irinotecan, and it is delivered intravenously. I will need to get another port-a-cath installed, so that they can deliver the FOLFIRI directly to my bloodstream near my heart. This cocktail will be administered every other week until the liver tumors shrink to a manageable size (as detected by CT scans). TOO MUCH FUN!
Surgical resection would happen next, followed by some more chemo to be sure there are no additional tumor-wannabes waiting around, probably with 5-FU, Leucovorin and Avastin. Maybe 2011 will end with an all-clear. Let's hope so.
In the meantime, everyone should relax, enjoy their lives, and hug their loved ones. Really, what else is there to do?
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