I hate feeling weak, I hate being weak and I hate appearing to be weak. All of these are true of me right now. Let me catch you up:
On 4/1, I had a gastric emptying exam. For this exam, you eat nothing for 12hrs prior and then eat a small amount of easily digestible food, laced with a radioactive marker (technetium in this case). They then scan you for about 2 hours, watching the food pass from you stomach and into your small intestine. For a normal person, about 50% of the food should have left the stomach within the first 90 minutes but, at 100 minutes, we had to stop the test early because I had to vomit. At that point, 2% (essentially nothing) had passed into my small bowel which gives a fairly confident diagnosis of paralytic stomach.
So, that afternoon, we met with the GI doctor and he started me on Reglan which should help stimulate stomach activity and I started taking it that evening. 4/2 went well and then, on 4/3, I had my regularly scheduled bilateral stent swap. The stent swap was successful but it is getting harder and harder for the urologist to fish that stent up my right ureter, taking almost a full hour this time.
Food did not go well that day nor did it go well on Saturday with my vomiting a large amount of bile and/or stomach acid on Saturday afternoon. Sunday was a good food day with me getting about 1600 calories but today (Monday) has been a down day with my target being about 1300 calories by the time I finish tonight. For someone of my height, I should be eating about 2000 calories on days when I do absolutely nothing and need to be significantly above that to increase my weight and strength.
We are giving the medication until Wednesday and then will contact the GI doc again about either other medication or starting me back up on TPN which I had 2 years ago. At least with TPN, I will be able to regain some strength and calories with both TPN feeding as well as some oral feeding as well.
For now, I am trying to do as little as possible and trying to eat whatever I can, whenever I can tolerate it. Seems odd, being an American, and having trouble eating. This is certainly a diet that I do not, under any circumstances, recommend.
I am keeping somewhat intellectually stimulated, working on my pet personal project of a thread based optimistic simulation engine and actually have made a lot of progress since I left it behind after my recovery in 2013. It has been fun learning new features of C++, Boost, and finding cool ways to make some awesome templates.
I have watched some movies I missed, seen some bad TV and taken a bunch of naps. I would MUCH prefer to be out and about, back to work and play but that is not going to be for a while unless we can solve this food issue.
Thanks for the well wishes and I hope to see all of you soon!
Monday, April 6, 2015
Thursday, March 19, 2015
Out of the hospital but with many unknowns.
They released me from the hospital today but we return home with questions as to what is causing the problems. I am consuming liquids and solid foods but I am still having difficulty with meals of any reasonable size. My diet is going to be limited to smaller meals with a significant portion of each meal being some sort of full liquid diet.
What we do know at this time is this:
What we do know at this time is this:
- I don't have a mechanical obstruction because when I am on a full liquid diet, I am able to pass food easily and do not have any of the other symptoms that I have been experiencing.
- I don't have a gastric outlet obstruction. We know this because I had an endoscopy on the day I left the hospital and nothing in my stomach or duodenum appears abnormal WRT obstruction potential.
What we still have on the table as possible diagnoses are:
- Ileus. Essentially, some part of my digestive tract going sleepy and not allowing things to pass.
- Gastric paralysis. This is where the stomach has similar symptoms as ileus in that it is somewhat sleepy. The stomach does not properly grind the food that you have put in it and it takes longer than normal to expel that food into the small intestine.
My opinions of these are uncertain. Unless my ileus is throughout the small intestine, right up to the stomach, I should be experiencing severe cramps whenever I am eating. This makes me suspect this diagnosis somewhat.
Gastric paralysis seems to have quite a bit going for it. I experience all the major symptoms of this diagnosis and that makes is a front runner at this point. There are some medications that have been successful at addressing this disorder so that would be something with potential. It also always responds well to a full liquid diet which matches what I was doing the first day in the hospital.
Gastric paralysis also can be either confirmed or ruled out with a relatively simple test. Essentially, I go to the radiologist on an empty stomach. They have me eat some item such as one or two hard boiled eggs and then take an x-ray every 15 minutes (or some other interval) to evaluate the rate at which that food leaves my stomach. This is then compared to expected timeframes for stomach evacuation of this amount of food.
Of course, these are only the current potential diagnoses and I hope that we don't have to look any further than these initial guesses and can move me forward!
Tuesday, March 17, 2015
Don't come to me for medical advice!
Several days ago, I wrote about how my condition had worsened and it got so bad that I needed to head to the hospital on Sunday evening. I had hoped to hold out till Monday after the kids went to school but I hit a wall and could not go any further. I will start this off saying that my self diagnosis was wrong but not completely wrong.
We got to the ER to see a relatively full waiting room and I thought we would be sitting for quite a while but I must have looked quite miserable because, after checking in, we were called back just 5 minutes later. I know they take people in order of criticality but I never imagined that I looked that bad but there didn't appear to be any broken legs or car wrecks waiting to be served.
Stephanie and I got put in a room and immediately started the second of many recitations of my medical history and they put in an IV. I am normally a difficult stick but the tech got my line going on just his second attempt. Shortly thereafter, they started me on IV fluids and ran about 2 liters into me in the span of 3 hours. The doctor also ordered an x-ray, looking for signs of an obstruction but, as with the CT earlier in the week, it came back negative.
This did make a noticeable improvement in my condition but I was still extremely fatigued and spent most of the time with my eyes closed, answering questions when I had to. As the second bag was finishing, the ER doc said they would admit me and we took a ride up to the oncology floor of Penrose Hospital. Again, I kept my eyes closed as we made the trip and it was a bit like a surreal amusement park ride as we started and stopped, waited for doors or people and made sudden turns in a new direction while going up and down various ramps.
I slept the night away and woke Monday morning, feeling enormously better. Of course, that is just getting lots of sleep and actually becoming normally hydrated for a change but it felt better and I actually looked quite a bit better as well. Stephanie returned, feeling a bit refreshed as well and let me know that I did look much better than the previous night's 'death warmed over' appearance.
So, in comes the doctor from my local oncologists' group to chat about what is going on. His theory is that my obstruction is not mechanical as in there is nothing physically blocking the way. What he thinks is going on is Ileus but he actually used air quotes when he gave this diagnosis.
To understand this diagnosis, you need to understand a bit about how your gut works to digest the food that you eat. The bowels work by slowly squeezing food along, extracting nutrients as it passes and adding enzymes to break it down. This is called peristalis and you can think of it a bit like stuffing sausages. The way your hands squeeze the casing (intestines), moves the sausage meat along is similar to how the intestines squeeze the digested food along, advancing towards the rectum.
His theory is that my intestines, after all the surgeries may now tend towards getting confused about how to perform this process and/or may go to sleep, not bothering to move the food along. Once they do this, it is like trying to stuff sausages by only pushing on one end of the casing. It just isn't going to work and is going to behave like an obstruction.
So, we have started a liquid diet and I do have some faint bowel noises and am starting to pass some stool again. Today, they have moved me to a full diet and will continue to monitor me and how I pass the food. I have been taking anti nausea medication which has helped some and it may be a part of my continually expanding list of medications now.
For me, the big concern is the future. Will this happen again? Possibly. Is there anything we can do at this point to prevent it from happening again? Most likely not. What do we do when it happens again? Same deal, hospitalization until I can tolerate food again. Eventually, it may come to a point were my bowels simply never start working again and I may have to go on TPN at that point for the rest of my life.
As to the short term future, I hope to be released from the hospital in the next few days and then will start getting my strength back and returning to work and play. I will update again when I get out and want to say thanks to all the well wishes I have been receiving. Hope to see all of you soon!
We got to the ER to see a relatively full waiting room and I thought we would be sitting for quite a while but I must have looked quite miserable because, after checking in, we were called back just 5 minutes later. I know they take people in order of criticality but I never imagined that I looked that bad but there didn't appear to be any broken legs or car wrecks waiting to be served.
Stephanie and I got put in a room and immediately started the second of many recitations of my medical history and they put in an IV. I am normally a difficult stick but the tech got my line going on just his second attempt. Shortly thereafter, they started me on IV fluids and ran about 2 liters into me in the span of 3 hours. The doctor also ordered an x-ray, looking for signs of an obstruction but, as with the CT earlier in the week, it came back negative.
This did make a noticeable improvement in my condition but I was still extremely fatigued and spent most of the time with my eyes closed, answering questions when I had to. As the second bag was finishing, the ER doc said they would admit me and we took a ride up to the oncology floor of Penrose Hospital. Again, I kept my eyes closed as we made the trip and it was a bit like a surreal amusement park ride as we started and stopped, waited for doors or people and made sudden turns in a new direction while going up and down various ramps.
I slept the night away and woke Monday morning, feeling enormously better. Of course, that is just getting lots of sleep and actually becoming normally hydrated for a change but it felt better and I actually looked quite a bit better as well. Stephanie returned, feeling a bit refreshed as well and let me know that I did look much better than the previous night's 'death warmed over' appearance.
So, in comes the doctor from my local oncologists' group to chat about what is going on. His theory is that my obstruction is not mechanical as in there is nothing physically blocking the way. What he thinks is going on is Ileus but he actually used air quotes when he gave this diagnosis.
To understand this diagnosis, you need to understand a bit about how your gut works to digest the food that you eat. The bowels work by slowly squeezing food along, extracting nutrients as it passes and adding enzymes to break it down. This is called peristalis and you can think of it a bit like stuffing sausages. The way your hands squeeze the casing (intestines), moves the sausage meat along is similar to how the intestines squeeze the digested food along, advancing towards the rectum.
His theory is that my intestines, after all the surgeries may now tend towards getting confused about how to perform this process and/or may go to sleep, not bothering to move the food along. Once they do this, it is like trying to stuff sausages by only pushing on one end of the casing. It just isn't going to work and is going to behave like an obstruction.
So, we have started a liquid diet and I do have some faint bowel noises and am starting to pass some stool again. Today, they have moved me to a full diet and will continue to monitor me and how I pass the food. I have been taking anti nausea medication which has helped some and it may be a part of my continually expanding list of medications now.
For me, the big concern is the future. Will this happen again? Possibly. Is there anything we can do at this point to prevent it from happening again? Most likely not. What do we do when it happens again? Same deal, hospitalization until I can tolerate food again. Eventually, it may come to a point were my bowels simply never start working again and I may have to go on TPN at that point for the rest of my life.
As to the short term future, I hope to be released from the hospital in the next few days and then will start getting my strength back and returning to work and play. I will update again when I get out and want to say thanks to all the well wishes I have been receiving. Hope to see all of you soon!
Saturday, March 14, 2015
How quickly Grossly Stable turns Critical
For months I have been sitting in the world of grossly stable. My kidneys have not changed, my cancer has advanced but not changed, my lungs have not accumulated any more fluid, and my hockey game has not improved.
Last November I went skiing with my two sons, staying at a Keystone hotel where we won two free nights stay. The afternoon of our first day, I got quite sick and then it continued through the next day, preventing me from skiing for 1.5 days. Later that month, I had another instance that felt quite a bit like an intestinal obstruction (extreme stomach cramps, vomiting, lack of appetite, delayed evacuation of stomach contents) but those went away and we forgot about the incident.
Over the next few months, my appetite was somewhat limited and, after many meals, I would belch continually with the taste of stomach acid/bile coming up frequently. Occasionally, this would get to the point of causing me to vomit but it was somewhat infrequent. Towards the end of February, things began to increase in frequency and we began to have suspicions of another bowel obstruction.
Carcinoid Cancer generally does not invade organs but tends to glom onto their outsides and causes mechanical issues as opposed to consuming organs (the liver is an exception here). What it has done to me is attach to veins, arteries, and intestines, interfering with their function. For my intestines, this causes them to bind up and kink, preventing stool from passing.
This tends to reveal itself as extreme abdominal cramps, vomiting, weight loss, lack of appetite, and delayed evacuation of stomach contents. I have been experiencing most of these and they have been coming to a head this second week of March. On Wednesday, I had a CT scan to try get a look at my bowels and determine the extent of the obstruction. Unfortunately, it was negative for an obstruction which is extremely perplexing, given the match of symptoms and prior experience with bowel obstructions.
So, this leaves us in a funny state. I don't know what is causing my symptoms. I don't know when they will alleviate. I don't know what to do at this point. I will have an appointment with a Gastro Interologist next week but don't know if I will make it to that point. I may be going to the ER sooner than I see the GI doc if I am unable to keep any food or water down if only to get some IV fluids
So, I am going to go out on a limb here and make my diagnosis. Of course, I am not a doctor but I think I have a reasonable theory. If nothing else, it will be interesting to find out how wrong or right I am!
What we know: I am unable to keep food down. I have abdominal cramps. I often throw up a large amount of bile (~400ml) in the morning even when going to bed on an empty stomach. I frequently have a significant amount of bile in my stomach. I have a loss of appetite. My CT does not indicate a bowel obstruction.
My current theory is that I have an obstruction in my descending duadenum, just past the point where the bile duct enters the small intestine. An obstruction at this point would cause the bile to back up and would result in the bile refluxing back through the pylorus into the stomach. An obstruction at this point would also prevent me from eating and the inability to digest food would lead to the decreased appetite. A slowly advancing obstruction would match my slow increase in symptoms over the past few months.
Finally, we have the negative CT scan. Here is my theory there. I was scheduled for a a CT one hour after downing the oral contrast. Due to a breakdown in the CT machine, my CT was about 2.5 hours later rather than just one hour later. This time may have been sufficient for the oral contrast to slip past the obstruction, making it appear that there is no obstruction.
Am I right? I have no idea. If I am right, I imagine that the only solution is surgical intervention which means a trip to New Orleans if they are willing to take on the challenge. That would also mean about 8 weeks off of work and may lead to me not skiing on Copper Mountain's closing day for the first time in about 8 years... Some things just need to be sacrificed.
Last November I went skiing with my two sons, staying at a Keystone hotel where we won two free nights stay. The afternoon of our first day, I got quite sick and then it continued through the next day, preventing me from skiing for 1.5 days. Later that month, I had another instance that felt quite a bit like an intestinal obstruction (extreme stomach cramps, vomiting, lack of appetite, delayed evacuation of stomach contents) but those went away and we forgot about the incident.
Over the next few months, my appetite was somewhat limited and, after many meals, I would belch continually with the taste of stomach acid/bile coming up frequently. Occasionally, this would get to the point of causing me to vomit but it was somewhat infrequent. Towards the end of February, things began to increase in frequency and we began to have suspicions of another bowel obstruction.
Carcinoid Cancer generally does not invade organs but tends to glom onto their outsides and causes mechanical issues as opposed to consuming organs (the liver is an exception here). What it has done to me is attach to veins, arteries, and intestines, interfering with their function. For my intestines, this causes them to bind up and kink, preventing stool from passing.
This tends to reveal itself as extreme abdominal cramps, vomiting, weight loss, lack of appetite, and delayed evacuation of stomach contents. I have been experiencing most of these and they have been coming to a head this second week of March. On Wednesday, I had a CT scan to try get a look at my bowels and determine the extent of the obstruction. Unfortunately, it was negative for an obstruction which is extremely perplexing, given the match of symptoms and prior experience with bowel obstructions.
So, this leaves us in a funny state. I don't know what is causing my symptoms. I don't know when they will alleviate. I don't know what to do at this point. I will have an appointment with a Gastro Interologist next week but don't know if I will make it to that point. I may be going to the ER sooner than I see the GI doc if I am unable to keep any food or water down if only to get some IV fluids
So, I am going to go out on a limb here and make my diagnosis. Of course, I am not a doctor but I think I have a reasonable theory. If nothing else, it will be interesting to find out how wrong or right I am!
What we know: I am unable to keep food down. I have abdominal cramps. I often throw up a large amount of bile (~400ml) in the morning even when going to bed on an empty stomach. I frequently have a significant amount of bile in my stomach. I have a loss of appetite. My CT does not indicate a bowel obstruction.
My current theory is that I have an obstruction in my descending duadenum, just past the point where the bile duct enters the small intestine. An obstruction at this point would cause the bile to back up and would result in the bile refluxing back through the pylorus into the stomach. An obstruction at this point would also prevent me from eating and the inability to digest food would lead to the decreased appetite. A slowly advancing obstruction would match my slow increase in symptoms over the past few months.
Finally, we have the negative CT scan. Here is my theory there. I was scheduled for a a CT one hour after downing the oral contrast. Due to a breakdown in the CT machine, my CT was about 2.5 hours later rather than just one hour later. This time may have been sufficient for the oral contrast to slip past the obstruction, making it appear that there is no obstruction.
Am I right? I have no idea. If I am right, I imagine that the only solution is surgical intervention which means a trip to New Orleans if they are willing to take on the challenge. That would also mean about 8 weeks off of work and may lead to me not skiing on Copper Mountain's closing day for the first time in about 8 years... Some things just need to be sacrificed.
Tuesday, January 6, 2015
Grossly stable
2015 started off with a successful stent swap on January 2nd and my every 3 month meeting with my oncologist today. I will have a meeting with the Nephrologist next week and then will see the Vascular Surgeon a month or so after that.
So, where are we now? The title of this post says it all as everything is grossly stable but here are the details:
The tumor in the lower lobe of my right lung hasn't changed much and the pleural eflusion that has been accumulating around the lung seems to have stopped accumulating and has not changed significantly. This means that, at least for now, I don't need to get a permanent tap installed to support continued draining of the fluid as long as I can tolerate the currently decreased capacity.
My kidneys also are grossly stable with my creatinine level sitting between 3.5 and 3.8. This is solidly stage 4 kidney failure but it has not budged in the last 8 months or so and, if anything, has decreased somewhat. My decreased liver failure has caused my current anemia but the injections of aranisp (synthetic EPO) has been maintaining my hemoglobin level at about 11. This is still low for a 'normal' person and is a far cry from the 17 I had 2 years ago but it is sufficient to continue playing hockey and ski.
The result of this is that dialysis continues to be put off and will be for the foreseeable future which is awesome!
Carcinoid syndrome is the one place that is not completely stable. The diarrhea has been increasing, even demonstrating some fat malabsorption at times. We are going to try higher levels of imodium and also add lomotil to the mixture to see if we can bring the diarrhea under control. Similarly, the flushing due to physical exertion has been on the increase, starting to show up when I walk up two flights of stairs at a reasonable pace. We will try adding some additional sub-q sandostatin prior to known periods of exertion to address this.
Bowel obstructions don't seem to be immediately apparent but they also are to be something that shows up without any warning. I have the occasional abdominal cramps and worry every time that it may be an obstruction but, fingers crossed, it has not happened yet.
As I mentioned at the start, I continue to have my bilateral ureteral stents swapped out every 2-3 months and my urologist is getting to know his way around my plumbing. A normal swap takes him about 5 minutes at the most but my swaps have taken as long as an hour to complete. This last one took less than half an hour and had minimal pain afterwards. As long as he is able to continue to swap out my stents, I should remain dialysis free and can avoid the dreaded percutaneous nephrostomy...
You may recall that, for several months this past summer, I had been experiencing regular fevers of 101 to 102 every evening. We tried several things to address this, even seeing an infectious disease specialist but could find no cause. Well, my third stent swap of 2014 seems to have cleared this up which seems to imply that it was some sort of persistent urinary tract infection that got removed with the stent swap.
My energy level has improved quite a bit and the walk into work is not as oppressive as it was at the end of the summer. Similarly, my continued chills seem to be lessened which could be a combination of many of the above.
Where do we sit now? Well I am more optimistic than I was 6 months ago. The repeated hits of lungs, kidneys, fevers, ... all had me thinking much more about my mortality but this has been pushed further into the back of my mind. The sword of Damocles is still suspended above my head but the hair suspending it seems to have been reinforced. I only have 6 ski days so far this year but 20 seems to be in reach. I still suck as a hockey goalie (I give sieves a bad name) but I can get out there once a week for fun.
Tumors will continue to grow, new metastases will appear and other violations of my body will occur. Grossly stable is a great place to be for now.
So, where are we now? The title of this post says it all as everything is grossly stable but here are the details:
The tumor in the lower lobe of my right lung hasn't changed much and the pleural eflusion that has been accumulating around the lung seems to have stopped accumulating and has not changed significantly. This means that, at least for now, I don't need to get a permanent tap installed to support continued draining of the fluid as long as I can tolerate the currently decreased capacity.
My kidneys also are grossly stable with my creatinine level sitting between 3.5 and 3.8. This is solidly stage 4 kidney failure but it has not budged in the last 8 months or so and, if anything, has decreased somewhat. My decreased liver failure has caused my current anemia but the injections of aranisp (synthetic EPO) has been maintaining my hemoglobin level at about 11. This is still low for a 'normal' person and is a far cry from the 17 I had 2 years ago but it is sufficient to continue playing hockey and ski.
The result of this is that dialysis continues to be put off and will be for the foreseeable future which is awesome!
Carcinoid syndrome is the one place that is not completely stable. The diarrhea has been increasing, even demonstrating some fat malabsorption at times. We are going to try higher levels of imodium and also add lomotil to the mixture to see if we can bring the diarrhea under control. Similarly, the flushing due to physical exertion has been on the increase, starting to show up when I walk up two flights of stairs at a reasonable pace. We will try adding some additional sub-q sandostatin prior to known periods of exertion to address this.
Bowel obstructions don't seem to be immediately apparent but they also are to be something that shows up without any warning. I have the occasional abdominal cramps and worry every time that it may be an obstruction but, fingers crossed, it has not happened yet.
As I mentioned at the start, I continue to have my bilateral ureteral stents swapped out every 2-3 months and my urologist is getting to know his way around my plumbing. A normal swap takes him about 5 minutes at the most but my swaps have taken as long as an hour to complete. This last one took less than half an hour and had minimal pain afterwards. As long as he is able to continue to swap out my stents, I should remain dialysis free and can avoid the dreaded percutaneous nephrostomy...
You may recall that, for several months this past summer, I had been experiencing regular fevers of 101 to 102 every evening. We tried several things to address this, even seeing an infectious disease specialist but could find no cause. Well, my third stent swap of 2014 seems to have cleared this up which seems to imply that it was some sort of persistent urinary tract infection that got removed with the stent swap.
My energy level has improved quite a bit and the walk into work is not as oppressive as it was at the end of the summer. Similarly, my continued chills seem to be lessened which could be a combination of many of the above.
Where do we sit now? Well I am more optimistic than I was 6 months ago. The repeated hits of lungs, kidneys, fevers, ... all had me thinking much more about my mortality but this has been pushed further into the back of my mind. The sword of Damocles is still suspended above my head but the hair suspending it seems to have been reinforced. I only have 6 ski days so far this year but 20 seems to be in reach. I still suck as a hockey goalie (I give sieves a bad name) but I can get out there once a week for fun.
Tumors will continue to grow, new metastases will appear and other violations of my body will occur. Grossly stable is a great place to be for now.
Monday, November 24, 2014
Ski season 2014-2015
It is finally here. The Van Iwaarden clan always (except for an interruption for surgery 2 years ago) takes a ski trip to Copper Mountain, renting a condo somewhere close to the resort. We generally ski up until Thanksgiving day, enjoying the lack of crowds in the early week and then get a wonderful dinner cooked by my personal chef, Stephanie Van Iwaarden. Stephanie is usually limited by the mystery kitchen, appliances, and cookware but always pulls together a meal that is awesome.
I have been particularly worried about this ski season. Our last day skiing in the 13/14 season was our traditional closing day at Copper Mountain on Easter. The mountain had just gotten a bunch of new snow the night before but the afternoon temperatures were in the upper 40s and lower 50s which turns snow into slop. Skiing these conditions an be tricky because the skis will grab and release almost without warning and the mounds of melting slush are hard to get through.
This was also the Sunday after my last I-131 treatment. I did not have much of an issue with the previous treatment and expected this to be similar. The day was horrible. I had to make 4-5 stops on one of our favorite runs (Copperfields) where we normally finish it in a single stretch or with just one quick break. My legs were dying and my heart felt like it was exploding.
You may remember that, at this time, I knew I had stage 4 kidney disease in addition to the cancer but that was the end of it. What we did not know at the time was that my hemoglobin production was faltering and I had dropped to a hemoglobin level of about 9.5 (17 was normal for me 3 years ago). I also did not know that the mass on my lung had continued to grow collapsing part of my right lung and now was causing an accumulation of pleural effusion, significantly reducing my lung capacity. The combination of all these issues is probably what was leading to my bad day skiing.
So, you can imagine my concern at the start of the 2014/15 season. I did not know if my lungs were going to give out or my legs were going to collapse. I have also been dealing with edema lately which has caused my legs, feet, and ankles to swell considerably. We have treated this with some diuretics (lost 10+ pounds in the first week) but I did not know if my ski boots would even fit.
The ski season has had a slow start but, in the last two weeks, it has dumped almost 5 feet of snow at Copper Mountain and they have now opened a remarkable amount of terrain for Thanksgiving week. We started off with a ride up American Flier and then dropped down into some of our favorite blue runs under Timberline Express.
Our first run was on The Moz which had just been opened today although many had been cutting the lines the previous couple of days. The snow was deep and soft and the old muscle memory kicked in and I glided down the run. There was the familiar feeling of floating on powder with no sounds around but the light whistle of the wind as the skis carve, dive, and surface in the deep snow.
Skiing is on for this year. I am certainly nowhere where I was last year at this time and I know I never will be again but I still can love the feeling of my skis sailing through blankets of snow. We skied Copperfields again with just one stop and I even took the side cut through Tempo which has not grown any real moguls yet.
We flew down Little Burn which was also opened today and enjoyed the smallest bumps that run will have all season. We broke for lunch, relaxed and warmed up and then headed out for a few more runs. Jaques Pique was just opened and we got to enjoy some untracked snow on that trail. Unfortunately, that was also the run that ended my day. I fell in some deep powder and the struggle to get back on my feet finished my legs and my lungs.
The day was wonderful. Seeing my kids bounce and play in the snow and watching my wife float down the runs is something I have never stopped enjoying. My kids are all better than me now and are certainly faster. It is rewarding to see them advance and enjoy the skiing that we have done as a family. I hope it is something that continues with them as they leave home and start their own lives and whatever families or friends they make.
I am back. I am not the skier I once was (Warren Miller said that "If you claim to be a better skier at 40 than you were at 20, you were a pretty bad skier at age 20) but I can still enjoy it. Find your snow this year now matter what form it takes or where you find it!
I have been particularly worried about this ski season. Our last day skiing in the 13/14 season was our traditional closing day at Copper Mountain on Easter. The mountain had just gotten a bunch of new snow the night before but the afternoon temperatures were in the upper 40s and lower 50s which turns snow into slop. Skiing these conditions an be tricky because the skis will grab and release almost without warning and the mounds of melting slush are hard to get through.
This was also the Sunday after my last I-131 treatment. I did not have much of an issue with the previous treatment and expected this to be similar. The day was horrible. I had to make 4-5 stops on one of our favorite runs (Copperfields) where we normally finish it in a single stretch or with just one quick break. My legs were dying and my heart felt like it was exploding.
You may remember that, at this time, I knew I had stage 4 kidney disease in addition to the cancer but that was the end of it. What we did not know at the time was that my hemoglobin production was faltering and I had dropped to a hemoglobin level of about 9.5 (17 was normal for me 3 years ago). I also did not know that the mass on my lung had continued to grow collapsing part of my right lung and now was causing an accumulation of pleural effusion, significantly reducing my lung capacity. The combination of all these issues is probably what was leading to my bad day skiing.
So, you can imagine my concern at the start of the 2014/15 season. I did not know if my lungs were going to give out or my legs were going to collapse. I have also been dealing with edema lately which has caused my legs, feet, and ankles to swell considerably. We have treated this with some diuretics (lost 10+ pounds in the first week) but I did not know if my ski boots would even fit.
The ski season has had a slow start but, in the last two weeks, it has dumped almost 5 feet of snow at Copper Mountain and they have now opened a remarkable amount of terrain for Thanksgiving week. We started off with a ride up American Flier and then dropped down into some of our favorite blue runs under Timberline Express.
Our first run was on The Moz which had just been opened today although many had been cutting the lines the previous couple of days. The snow was deep and soft and the old muscle memory kicked in and I glided down the run. There was the familiar feeling of floating on powder with no sounds around but the light whistle of the wind as the skis carve, dive, and surface in the deep snow.
Skiing is on for this year. I am certainly nowhere where I was last year at this time and I know I never will be again but I still can love the feeling of my skis sailing through blankets of snow. We skied Copperfields again with just one stop and I even took the side cut through Tempo which has not grown any real moguls yet.
We flew down Little Burn which was also opened today and enjoyed the smallest bumps that run will have all season. We broke for lunch, relaxed and warmed up and then headed out for a few more runs. Jaques Pique was just opened and we got to enjoy some untracked snow on that trail. Unfortunately, that was also the run that ended my day. I fell in some deep powder and the struggle to get back on my feet finished my legs and my lungs.
The day was wonderful. Seeing my kids bounce and play in the snow and watching my wife float down the runs is something I have never stopped enjoying. My kids are all better than me now and are certainly faster. It is rewarding to see them advance and enjoy the skiing that we have done as a family. I hope it is something that continues with them as they leave home and start their own lives and whatever families or friends they make.
I am back. I am not the skier I once was (Warren Miller said that "If you claim to be a better skier at 40 than you were at 20, you were a pretty bad skier at age 20) but I can still enjoy it. Find your snow this year now matter what form it takes or where you find it!
Saturday, November 1, 2014
Z is for Zebra
This was one of the easiest letters to pick. The Zebra is the mascot for carcinoid cancer because physicians are taught that 'When you hear hoofbeats, think horses, not zebras." This is excellent advice and is an example of Occam's Razor. Essentially, the answer that has the fewest assumptions should be selected.
Carcinoid mimics many other more normal diseases like irritable bowel syndrome, Crohn's disease, stress, gluten intolerance, or any one of number of other diseases. In spite of my misdiagnosis, this is exactly what a doctor should do. You should choose the most likely situation but (and here is where my doctors originally fell short), you also need to keep the zebra in mind when the horses don't materialize.
The misdiagnosis in my first years were not outside of the horse arena as my symptoms were quite minor. In the final months, that is where the zebra should have started making an appearance in my doctor's diagnostic sequences. On the other hand, it is certain that the few months of misdiagnosis would not have lead to any difference in my current situation. However, if it had been caught several years earlier, that diagnosis could have lead to a potential full cure.
But at what cost? The blood test is pricy, nuclear medicine scans are extremely pricy, and neither may have been definitive. This sort of shotgun testing is a significant part of our healthcare cost explosion in the last few years. Doctors order batteries of tests because it is easier to just administer a test and it is safer from a malpractice point of view as well. These tests are often not cheap (CT Scans and MRIs for minor head injuries) but they are a quick and easy way to rule out certain diagnosis and to CYA. Doctors are also not the only ones at fault here as patients demand or expect this tests to be done in order to ease their mind about the possibilities.
We need to get these costs under control. Zebras need to be considered but they need to be addressed further down in the diagnosis tree rather than pushed up to the top. Without getting these costs under control, healthcare is going to continue explode. Whether you like it or not, the Affordable Care Act is attempting to implement some controls that will use the carrot of higher payments for doctors and hospitals to implement more efficient care. This already has proven effective in some areas such as reducing hospital recidivism through follow up care and doctors visits.
Are you a zebra too? Perhaps. Follow the diagnostic tree through the most likely illnesses. If you have a fever, almost certainly,it is flu or a head cold and you don't have ebola. Even malaria or typhus would be a more likely diagnosis than the albino zebra of ebola. Attack the most likely situation first and save the expensive or invasive tests until later. I had this exact situation about 4 months ago when I had persistent low grade fevers (100-101) every evening. We checked the easy, cheap, and higher probability causes and then waited to see if my scheduled stent swap would solve a possible UTI. It did and no more tests were needed.
Doctors need to be given the time to go through proper sequences and then also need to not be punished (sued) for missing the 1 in a million case. Be patient as they try to diagnose you because medical science is not as precise as we would like due to the amazing complexity of our bodies.
Carcinoid mimics many other more normal diseases like irritable bowel syndrome, Crohn's disease, stress, gluten intolerance, or any one of number of other diseases. In spite of my misdiagnosis, this is exactly what a doctor should do. You should choose the most likely situation but (and here is where my doctors originally fell short), you also need to keep the zebra in mind when the horses don't materialize.
The misdiagnosis in my first years were not outside of the horse arena as my symptoms were quite minor. In the final months, that is where the zebra should have started making an appearance in my doctor's diagnostic sequences. On the other hand, it is certain that the few months of misdiagnosis would not have lead to any difference in my current situation. However, if it had been caught several years earlier, that diagnosis could have lead to a potential full cure.
But at what cost? The blood test is pricy, nuclear medicine scans are extremely pricy, and neither may have been definitive. This sort of shotgun testing is a significant part of our healthcare cost explosion in the last few years. Doctors order batteries of tests because it is easier to just administer a test and it is safer from a malpractice point of view as well. These tests are often not cheap (CT Scans and MRIs for minor head injuries) but they are a quick and easy way to rule out certain diagnosis and to CYA. Doctors are also not the only ones at fault here as patients demand or expect this tests to be done in order to ease their mind about the possibilities.
We need to get these costs under control. Zebras need to be considered but they need to be addressed further down in the diagnosis tree rather than pushed up to the top. Without getting these costs under control, healthcare is going to continue explode. Whether you like it or not, the Affordable Care Act is attempting to implement some controls that will use the carrot of higher payments for doctors and hospitals to implement more efficient care. This already has proven effective in some areas such as reducing hospital recidivism through follow up care and doctors visits.
Are you a zebra too? Perhaps. Follow the diagnostic tree through the most likely illnesses. If you have a fever, almost certainly,it is flu or a head cold and you don't have ebola. Even malaria or typhus would be a more likely diagnosis than the albino zebra of ebola. Attack the most likely situation first and save the expensive or invasive tests until later. I had this exact situation about 4 months ago when I had persistent low grade fevers (100-101) every evening. We checked the easy, cheap, and higher probability causes and then waited to see if my scheduled stent swap would solve a possible UTI. It did and no more tests were needed.
Doctors need to be given the time to go through proper sequences and then also need to not be punished (sued) for missing the 1 in a million case. Be patient as they try to diagnose you because medical science is not as precise as we would like due to the amazing complexity of our bodies.
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