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!
Monday, November 24, 2014
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.
Monday, October 27, 2014
13th anniversary
The evening of October 26th, 2001, I went in for an exploratory laparotomy, unsure of what the results would be but the possibility of cancer was far from my mind. My wife was told after surgery that they removed a tumor and, on the morning of October 27th, 2001, I was informed of the diagnosis. It has been a long 13 years and I have been fortunate in living this long and getting to enjoy so much of my family and friends for these years.
Today, it is 9:45 and I look at the clock as I have a 12:15 outpatient surgery to do a bilateral stent swap. I have done many of these since my first stents were inserted after my 11/2011 surgery and I know mostly what to expect. By mostly, I mean if things go as planned. With each stent swap, there is an increased probability that they will be unsuccessful as the tumors continue to press harder on the ureters.
One of these stent swaps (and it could be today), I could wake up to find out that they were unable to swap one or both of the stents. If this happens, the next step is percutaneous nephrostomy tubes and that is another step that I fear. I know I will learn to live with them and I know that many other people do as well but I fear yet another change.
I don't want to go today. Every surgery looks fine from several weeks out but, on the day of surgery, I start to lose it a bit. I hate getting another IV inserted. I hate having to make sure the anesthesiologist knows how to hand carcinoid syndrome. I hate waiting in the pre-op rooms with my feet getting cold. I hate the feeling of going to sleep and I hate waking up, not knowing whether or not the procedure was successful or not.
Just like every other time, I will go today and I will get the procedure. I will hope for the best possible result but I dread the time in between.
Today, it is 9:45 and I look at the clock as I have a 12:15 outpatient surgery to do a bilateral stent swap. I have done many of these since my first stents were inserted after my 11/2011 surgery and I know mostly what to expect. By mostly, I mean if things go as planned. With each stent swap, there is an increased probability that they will be unsuccessful as the tumors continue to press harder on the ureters.
One of these stent swaps (and it could be today), I could wake up to find out that they were unable to swap one or both of the stents. If this happens, the next step is percutaneous nephrostomy tubes and that is another step that I fear. I know I will learn to live with them and I know that many other people do as well but I fear yet another change.
I don't want to go today. Every surgery looks fine from several weeks out but, on the day of surgery, I start to lose it a bit. I hate getting another IV inserted. I hate having to make sure the anesthesiologist knows how to hand carcinoid syndrome. I hate waiting in the pre-op rooms with my feet getting cold. I hate the feeling of going to sleep and I hate waking up, not knowing whether or not the procedure was successful or not.
Just like every other time, I will go today and I will get the procedure. I will hope for the best possible result but I dread the time in between.
Saturday, October 25, 2014
Y is for Yellow
In spite of his horrible behavior as a human being, Lance Armstrong did a wonderful job starting the livestrong campaign, raising money for cancer research. Yellow is the color of choice for the effort and harkens back to the yellow jersey that is worn by the overall leader of the Tour de France which Lance won, partially due to the drugs he and everyone else were taking. Yellow was actually originally chosen because that was the color of the cover of the magazine that sponsored the original Tour.
I wanted to talk a bit about charity today and the choices that we make. The ice bucket challenge that recently went viral over the internet resulted in a large amount of money for the ALS society. ALS typically gets a relatively small amount of money in charity each year due to the somewhat obscurity of the disease and raised about $19k in all of 2013. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 31. That is just one month and they got more than twice their total amount from the previous year.
At some point, you need to decide whether a donation is a good use of your funds or not. When it comes to the ALS Association, the money will certainly be put to good use but at some point, they will have more money than they know what to do with and the use of the money will be low. A similar thing happened when the Red Cross received money for the September 11th attacks. They received more money than could be used and planned on saving some money for future incidents so they could react more effectively. This plan was quickly fought by many who donated since they wanted their money to go to September 11th victims.
October is breast cancer awareness month and it raises a great deal of money for breast cancer research. If the desire is to reduce the number of women who die, it would be a far better thing to donate to heart disease research as all cancer in women is second to heart disease when it comes to cause of death. Breast cancer gets quite a bit of attention for many reasons including the stigma that was historically associated with breast cancer and the disfiguration many women suffer in their treatment.
Where have I gotten financial support from some of your donations? If you have given to the american cancer society (60% of money donated goes to services provided), I then have benefited from your generosity through repeated stays at the hope lodge in New Orleans. This service has made our long stays (two weeks or more in the case of my surgeries) much more affordable and tolerable. If you have donated money to carcinoid research, it is fairly likely that little, if any, has benefited me in any way. It is likely that it will help someone in the future who is diagnosed with carcinoid but, due to the long timeline for research, it won't help me.
When you do give money, please look into how that money is handled and how much actually goes to the benefit that you are supporting. Organizations vary greatly in the percentage of money that goes to overhead and the amount that benefits the cause. Numbers can range anywhere from nearly 0% to nearly 100%. The Red Cross, for example, is able to use about 91% of the money that they raise to help people. Feeding America uses 98% of the money they raise to feed people. Children's Charity Fund Inc. gives about 6.1% of their dollars to services it delivers. Naturally, the last one is not high on my list of organizations you should fund. Before you give, take a look at Charity Navigator to find out if your donations will be used wisely.
I wanted to talk a bit about charity today and the choices that we make. The ice bucket challenge that recently went viral over the internet resulted in a large amount of money for the ALS society. ALS typically gets a relatively small amount of money in charity each year due to the somewhat obscurity of the disease and raised about $19k in all of 2013. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 31. That is just one month and they got more than twice their total amount from the previous year.
At some point, you need to decide whether a donation is a good use of your funds or not. When it comes to the ALS Association, the money will certainly be put to good use but at some point, they will have more money than they know what to do with and the use of the money will be low. A similar thing happened when the Red Cross received money for the September 11th attacks. They received more money than could be used and planned on saving some money for future incidents so they could react more effectively. This plan was quickly fought by many who donated since they wanted their money to go to September 11th victims.
October is breast cancer awareness month and it raises a great deal of money for breast cancer research. If the desire is to reduce the number of women who die, it would be a far better thing to donate to heart disease research as all cancer in women is second to heart disease when it comes to cause of death. Breast cancer gets quite a bit of attention for many reasons including the stigma that was historically associated with breast cancer and the disfiguration many women suffer in their treatment.
Where have I gotten financial support from some of your donations? If you have given to the american cancer society (60% of money donated goes to services provided), I then have benefited from your generosity through repeated stays at the hope lodge in New Orleans. This service has made our long stays (two weeks or more in the case of my surgeries) much more affordable and tolerable. If you have donated money to carcinoid research, it is fairly likely that little, if any, has benefited me in any way. It is likely that it will help someone in the future who is diagnosed with carcinoid but, due to the long timeline for research, it won't help me.
When you do give money, please look into how that money is handled and how much actually goes to the benefit that you are supporting. Organizations vary greatly in the percentage of money that goes to overhead and the amount that benefits the cause. Numbers can range anywhere from nearly 0% to nearly 100%. The Red Cross, for example, is able to use about 91% of the money that they raise to help people. Feeding America uses 98% of the money they raise to feed people. Children's Charity Fund Inc. gives about 6.1% of their dollars to services it delivers. Naturally, the last one is not high on my list of organizations you should fund. Before you give, take a look at Charity Navigator to find out if your donations will be used wisely.
Monday, October 20, 2014
X is for X-ray
Ok, it is an obvious choice but there really aren't many options for X. My wife has read the alphabet mystery novels by Sue Grafton (A is for Alibi, B is for Burgler, ...) and we can't imagine any other choice from her for the letter X either.
For me, X-ray is appropriate. After blood tests, scans of all variety are the only way to really track a cancer. Each type of scan has advantages and disadvantages and every cancer has its preferred scan or sets of scans. There are a number of scans that I have gotten over the years and each works in a different way and provides different information.
X-rays are the some of the first scans that allowed doctors and others to see inside of the body without cutting. X-rays are relatively simple in action. We have all taken a flashlight and shone it through a finger, seeing the glow of the blood and, with bright enough flashlights, a bit of a shadow where the bone lies. That is exactly how an x-ray works. A beam of x-rays are directed through the body and a detector (think photo-sensitive paper), picks up the x-rays that make it through. X-rays go through skin and flesh better than through bone so x-rays are very good at identifying broken bones or the structure of the skeleton.
Computerized Tomography (CT) works similarly except that now the pictures are taken in rapid succession from 360 degrees around the body and then are fused together in a computer. This gives 3d images because then the scans are done in slices along the length of the body. Just like x-rays, the skeleton shows up well and empty spaces (lungs) show up well. Other areas of the body show up as mostly a blob with slight increases or decreases in density because of more or less water in that area. For this reason, scans are generally done using a contrast injected into the veins to give definition. This contrast then acts similar to bone, highlighting critical areas such as liver, tumor and organs.
Two similar scans that Carcinoid patients receive are the Octroscan and an MIBG scan. Both of these operate by tagging a substance with a radioactive marker. The substance used is one that is often taken up by carcinoid tumors (octreotide in the case of octreoscan and a molecule similar to noradrenaline for MIBG), tagged with either indum-111 (octreoscan) or iodine 123 (MIBG). Unlike X-rays, the tumors now become the emitters of the waves (gamma waves) that are detected by cameras that move around the body. Essentially, the tumors suck up the marker and then begin to glow due to the radioactive decay of the tag.
Positive Electron Tomography (PET) scans are not very good for carcinoid in general. These scans usually use a sugar like substance that is tagged with positron emitting radioactive agent. Since carcinoid grows relatively slowly, it does not take up sugars in large amounts and, thus, the tumors do not turn into glowing sources of positrons in the body. There are some recent trials of a new PET scan using Galium-68 but this scan requires an accelerator on location because the half life of GA68 is just 62 minutes. That means that if you started with 100 units of GA68, you would only have 50 units in about an hour, 25 units in 2hrs and 12.5 units in 3hrs, ... Since it decays so fast, the substance needs to be created just before administration of the test.
The final scan is the one I understand the least and is one that many of you have had and that is a Magnetic Resonance Imaging (MRI). MRIs operate by creating extremely strong, alternating magnetic fields that then cause the hydrogen atoms in your body to vibrate and emit radio waves. These waves are detected and, by varying the types and strengths of fields, images can be generated. Similar to a CT scan, contrast is often used since so much of your body is made of water, one sack of water (kidney) is not terribly distinct from another sack of water (liver). Contrast makes the veins glow strongly and this can then give definition to these organs.
Finally, one of the simplest and oldest scanning techniques is the ultrasounds. Ultrasounds work similar to how bats echo-locate. Sound waves are sent into the body and their reflections are detected by the emitter. By calculating the time between the wave being sent and the time it is received, a calculation of the distance can be made and an image is then generated from that calculation. Ultrasounds also can detect doper shift so they can determine what direction fluids (blood in particular) is flowing and its relative speed.
For all the scans you get, you never really know what is going on until the surgeon opens up your body. In 2011, Dr. Boudreaux got a serious surprise as the scans told him nothing of the nightmare that my abdomen was in. They give information but they cannot tell the whole story. The scans are getting better and they can greatly assist diagnosis and treatment but nothing ever is better than actually going for a hands on look.
For me, X-ray is appropriate. After blood tests, scans of all variety are the only way to really track a cancer. Each type of scan has advantages and disadvantages and every cancer has its preferred scan or sets of scans. There are a number of scans that I have gotten over the years and each works in a different way and provides different information.
X-rays are the some of the first scans that allowed doctors and others to see inside of the body without cutting. X-rays are relatively simple in action. We have all taken a flashlight and shone it through a finger, seeing the glow of the blood and, with bright enough flashlights, a bit of a shadow where the bone lies. That is exactly how an x-ray works. A beam of x-rays are directed through the body and a detector (think photo-sensitive paper), picks up the x-rays that make it through. X-rays go through skin and flesh better than through bone so x-rays are very good at identifying broken bones or the structure of the skeleton.
Computerized Tomography (CT) works similarly except that now the pictures are taken in rapid succession from 360 degrees around the body and then are fused together in a computer. This gives 3d images because then the scans are done in slices along the length of the body. Just like x-rays, the skeleton shows up well and empty spaces (lungs) show up well. Other areas of the body show up as mostly a blob with slight increases or decreases in density because of more or less water in that area. For this reason, scans are generally done using a contrast injected into the veins to give definition. This contrast then acts similar to bone, highlighting critical areas such as liver, tumor and organs.
Two similar scans that Carcinoid patients receive are the Octroscan and an MIBG scan. Both of these operate by tagging a substance with a radioactive marker. The substance used is one that is often taken up by carcinoid tumors (octreotide in the case of octreoscan and a molecule similar to noradrenaline for MIBG), tagged with either indum-111 (octreoscan) or iodine 123 (MIBG). Unlike X-rays, the tumors now become the emitters of the waves (gamma waves) that are detected by cameras that move around the body. Essentially, the tumors suck up the marker and then begin to glow due to the radioactive decay of the tag.
Positive Electron Tomography (PET) scans are not very good for carcinoid in general. These scans usually use a sugar like substance that is tagged with positron emitting radioactive agent. Since carcinoid grows relatively slowly, it does not take up sugars in large amounts and, thus, the tumors do not turn into glowing sources of positrons in the body. There are some recent trials of a new PET scan using Galium-68 but this scan requires an accelerator on location because the half life of GA68 is just 62 minutes. That means that if you started with 100 units of GA68, you would only have 50 units in about an hour, 25 units in 2hrs and 12.5 units in 3hrs, ... Since it decays so fast, the substance needs to be created just before administration of the test.
The final scan is the one I understand the least and is one that many of you have had and that is a Magnetic Resonance Imaging (MRI). MRIs operate by creating extremely strong, alternating magnetic fields that then cause the hydrogen atoms in your body to vibrate and emit radio waves. These waves are detected and, by varying the types and strengths of fields, images can be generated. Similar to a CT scan, contrast is often used since so much of your body is made of water, one sack of water (kidney) is not terribly distinct from another sack of water (liver). Contrast makes the veins glow strongly and this can then give definition to these organs.
Finally, one of the simplest and oldest scanning techniques is the ultrasounds. Ultrasounds work similar to how bats echo-locate. Sound waves are sent into the body and their reflections are detected by the emitter. By calculating the time between the wave being sent and the time it is received, a calculation of the distance can be made and an image is then generated from that calculation. Ultrasounds also can detect doper shift so they can determine what direction fluids (blood in particular) is flowing and its relative speed.
For all the scans you get, you never really know what is going on until the surgeon opens up your body. In 2011, Dr. Boudreaux got a serious surprise as the scans told him nothing of the nightmare that my abdomen was in. They give information but they cannot tell the whole story. The scans are getting better and they can greatly assist diagnosis and treatment but nothing ever is better than actually going for a hands on look.
Saturday, October 11, 2014
W is for When
Everyone's life is full of 'when'. When will I get a better job? When will the kids finally move out? When will the kids move out again? When am I going to get recognized. Cancer adds a few more whens.
The biggest one and the one that everyone asks when first diagnosed is 'Will this kill me and, if so, when will I die?' When will I die? There are lots of places on the internet that will allow you to put in various thing like smoking habits, eating, weight, height and will give you an approximate life span based upon standard statistical tables. I occasionally take these polls for kicks and grins just to see what things would be like if I were cancer free and the surveys usually come out with a life span of around 80-85 years.
What is my real life span? It is very hard to say. I got a big fright this summer with the metastases to my right lung but that probably won't kill me. It is likely going to be my liver but that is simply the front runner of things that could be the end. Liver failure does not give any options. The only real cure for liver failure is a liver transplant and I am obviously not high on the list of potential candidates. There are still treatments we can use to address the mets in the liver but, eventually, there just is not much that can be done and that will be an end.
Of course, that is the time we hit the word of the day: When. Last time anyone gave an estimate (about 2 years ago), my liver was about 15% consumed with tumor. I have noticed an increase in carcinoid syndrome, particularly in flushing. This seems to imply that the liver involvement is increasing because those nasty little tumors are dumping their neuro-endocrines directly into my blood stream without the filtering of the kidney or liver. We can't get an estimate of tumor load from a CT scan because of my kidney failure but we may try to get an estimate either through a doppler ultrasound or a CT with contrast once my kidneys have completely failed and I am on dialysis.
Speaking of my kidneys, they will be failing sometime here in the near future but their failure won't lead directly to death. I will quickly start on dialysis and long term dialysis shouldn't be an issue. There will always be the continual low probability chance for infection but that should be manageable and not result in death.
My lungs are another potential critical point. It is likely my liver will go first but if my right lung ever got too critical, it can be removed and I can continue with just my left lung. People do get lung transplants but, again, I am not someone that would be on anyone's list of receiving a transplanted organ.
Another 'when' could come from the continual minor surgeries that I continue to receive. I have a bilateral ureteral stent swap about every 3-4 months. We have not had any issues with the anesthesia that we have been using but there is a possibility of my going into crisis and not recovering, leading to death.
Yet another bowel obstruction is another possibility. I have had 3 so far and if I were to live another 10 years, I would almost certainly have another. If I do obstruct and surgery is an option, a long surgery raises the specter of carcinoid crisis and simply the everyday normal complications of an extended and very involved abdominal surgery. If surgery is not an option, I will almost certainly go back on TPN again. TPN would significantly increase the probability of infection as the path of injection goes directly into my blood system.
What does this all mean? When is when? A study by Dr. Pommier shows that the removal of the primary tumor leads to greatly extended survival, primarily due to delayed onset of liver involvement. In that study, 16 out of 18 of the patients who did not have a primary tumor resected did not survive past 5 years. On the other hand, for those who had primary tumors resected (as I did), there was a 60% survival rate at 15 years. My relative youth also should be a bonus as I was 20 years younger than the average age at diagnosis in Dr. Pommier's study.
When? I don't know but I know it pretty much all depends on my liver as approximately 75% of those who died, died of liver failure. The end of October marks 13 years so I am happily moving into that 60% survival rate group. What I do know is that I will not squander what is remaining. I will not squander an hour doing things that do not matter, are not rewarding, are not fulfilling, or are not memorable. That doesn't mean I won't sit in meetings at work that are boring (there is a price to pay for the others).
What about you? When is when for you? Taking these surveys for my wife yields 90ish years. What time are you squandering or wasting? You never know when a drunk driver, a flash flood, hurricane, tornado, or some other situation far beyond your control will be your when. Enjoy your life and make sure that if your when were to come tomorrow, you will not regret your today.
The biggest one and the one that everyone asks when first diagnosed is 'Will this kill me and, if so, when will I die?' When will I die? There are lots of places on the internet that will allow you to put in various thing like smoking habits, eating, weight, height and will give you an approximate life span based upon standard statistical tables. I occasionally take these polls for kicks and grins just to see what things would be like if I were cancer free and the surveys usually come out with a life span of around 80-85 years.
What is my real life span? It is very hard to say. I got a big fright this summer with the metastases to my right lung but that probably won't kill me. It is likely going to be my liver but that is simply the front runner of things that could be the end. Liver failure does not give any options. The only real cure for liver failure is a liver transplant and I am obviously not high on the list of potential candidates. There are still treatments we can use to address the mets in the liver but, eventually, there just is not much that can be done and that will be an end.
Of course, that is the time we hit the word of the day: When. Last time anyone gave an estimate (about 2 years ago), my liver was about 15% consumed with tumor. I have noticed an increase in carcinoid syndrome, particularly in flushing. This seems to imply that the liver involvement is increasing because those nasty little tumors are dumping their neuro-endocrines directly into my blood stream without the filtering of the kidney or liver. We can't get an estimate of tumor load from a CT scan because of my kidney failure but we may try to get an estimate either through a doppler ultrasound or a CT with contrast once my kidneys have completely failed and I am on dialysis.
Speaking of my kidneys, they will be failing sometime here in the near future but their failure won't lead directly to death. I will quickly start on dialysis and long term dialysis shouldn't be an issue. There will always be the continual low probability chance for infection but that should be manageable and not result in death.
My lungs are another potential critical point. It is likely my liver will go first but if my right lung ever got too critical, it can be removed and I can continue with just my left lung. People do get lung transplants but, again, I am not someone that would be on anyone's list of receiving a transplanted organ.
Another 'when' could come from the continual minor surgeries that I continue to receive. I have a bilateral ureteral stent swap about every 3-4 months. We have not had any issues with the anesthesia that we have been using but there is a possibility of my going into crisis and not recovering, leading to death.
Yet another bowel obstruction is another possibility. I have had 3 so far and if I were to live another 10 years, I would almost certainly have another. If I do obstruct and surgery is an option, a long surgery raises the specter of carcinoid crisis and simply the everyday normal complications of an extended and very involved abdominal surgery. If surgery is not an option, I will almost certainly go back on TPN again. TPN would significantly increase the probability of infection as the path of injection goes directly into my blood system.
What does this all mean? When is when? A study by Dr. Pommier shows that the removal of the primary tumor leads to greatly extended survival, primarily due to delayed onset of liver involvement. In that study, 16 out of 18 of the patients who did not have a primary tumor resected did not survive past 5 years. On the other hand, for those who had primary tumors resected (as I did), there was a 60% survival rate at 15 years. My relative youth also should be a bonus as I was 20 years younger than the average age at diagnosis in Dr. Pommier's study.
When? I don't know but I know it pretty much all depends on my liver as approximately 75% of those who died, died of liver failure. The end of October marks 13 years so I am happily moving into that 60% survival rate group. What I do know is that I will not squander what is remaining. I will not squander an hour doing things that do not matter, are not rewarding, are not fulfilling, or are not memorable. That doesn't mean I won't sit in meetings at work that are boring (there is a price to pay for the others).
What about you? When is when for you? Taking these surveys for my wife yields 90ish years. What time are you squandering or wasting? You never know when a drunk driver, a flash flood, hurricane, tornado, or some other situation far beyond your control will be your when. Enjoy your life and make sure that if your when were to come tomorrow, you will not regret your today.
Saturday, October 4, 2014
V is for Vanity
Vanity. I have never thought of myself as an excessively vain person but my disease has revealed ways in which I have been vain and ways in which vanity is taken from you.
I have never thought of myself as an exceptionally attractive person and have always considered myself to be average. I have been fortunate in that I have not had to have any chemo that would cause me to lose my hair but my body and appearance have been affected in other ways.
I have always been tall and relatively thin at 6' 3" and around 205 pounds. A few months prior to my diagnosis, I 'ballooned' to 220 pounds but the bowel obstruction knocked me back to about 190 pounds. I again returned to just over 200 pounds and hung out there for the next 9 years through repeated surgeries and was happy with my general physical appearance.
The bowel obstruction I suffered in 2011 took me down to 175 pounds prior to the first surgery when I was unable to eat and subsisted on TPN. The next surgery took my weight into the 160s and I have slowly returned to about 175 pounds again. I never was what anyone would have considered to be muscular but the loss of 30 pounds has made me displeased with my general appearance. I feel I appear gaunt and weak now although that is probably more self image than anything else.
I have had several additional things to make me feel unattractive. I received a colostomy with my second surgery in 2011 and it is something that I still struggle with at times. I know everybody poops and I just have a slightly different exit. I manage the day to day issues without any trouble anymore and critical incidents have been mostly eliminated but it is still there and is something of which I am very self conscious.
I also have a AV graft in my left forearm and it looks somewhat bizarre. I truly enjoy the technical aspects of it but tend to hide my arm when I am not wearing long sleeved shirts. I do appreciate the access it will provide for my future dialysis but the oddness of it's appearance and the weird feeling of the blood flowing through it and the 'folding' of the tube when I bend my arm make me uncomfortable.
I have always been proud of what I felt was an above average base level of fitness. I ran my first 5k in late summer of 2010 and had done no running at all that year but still got a respectable (for a first timer) time of 28 minutes. I have always been able to hop on my bike and keep up with average cyclists without much trouble but have never been exceptional. Playing two back to back games of hockey wasn't an issue and even a third was possible at times.
Needless to say, my base level of fitness has been significantly reduced. My hemoglobin has now hit a new high recently of 10.1. That is still 1/3 less than my base level 3 years ago but it is significantly improved from the low of 7.7 I hit 3 months ago. My wife and I took a short hike up Spruce Mountain today and, even though we cut it short at just 4 miles and 600 feet of vertical, I was exhausted at the end. I would love to return to an average level of fitness but that simply is not going to happen again.
Of course, do I need to say anything about hospitals? Hospital gowns and I have spent way too much time together and some of the tests I have received have felt humiliating. I have gotten quite used to life in a hospital and even the gowns have become something that I don't mind too much anymore but the general idea of them is not something I relish.
Future degradations are coming as well. Sometime I am going to get a permanent tap to drain my lungs and that will be a tube hanging out of my side. Sometime, I am probably going to need to get percutaneous nephrostomy tubes and will have those tubes hanging out my back near my waist. Other things are probably coming as well and I am sure that they are not going to be high on the list of fashion accessories.
All this said, I wouldn't change a thing. I pass 13 years post diagnosis at the end of this month and still see several years ahead of me. Each of these things that have taken some of my self image away have been followed up by more years with my wife and kids. I hate my colostomy but, without it, I would die. I hate my AV graft but it will keep me alive. I hate my weakness but love that I can still walk, play hockey, and do some physical activity. I would do them all over again for the years that they have given me. Life is too important to worry about things like vanity.
I have never thought of myself as an exceptionally attractive person and have always considered myself to be average. I have been fortunate in that I have not had to have any chemo that would cause me to lose my hair but my body and appearance have been affected in other ways.
I have always been tall and relatively thin at 6' 3" and around 205 pounds. A few months prior to my diagnosis, I 'ballooned' to 220 pounds but the bowel obstruction knocked me back to about 190 pounds. I again returned to just over 200 pounds and hung out there for the next 9 years through repeated surgeries and was happy with my general physical appearance.
The bowel obstruction I suffered in 2011 took me down to 175 pounds prior to the first surgery when I was unable to eat and subsisted on TPN. The next surgery took my weight into the 160s and I have slowly returned to about 175 pounds again. I never was what anyone would have considered to be muscular but the loss of 30 pounds has made me displeased with my general appearance. I feel I appear gaunt and weak now although that is probably more self image than anything else.
I have had several additional things to make me feel unattractive. I received a colostomy with my second surgery in 2011 and it is something that I still struggle with at times. I know everybody poops and I just have a slightly different exit. I manage the day to day issues without any trouble anymore and critical incidents have been mostly eliminated but it is still there and is something of which I am very self conscious.
I also have a AV graft in my left forearm and it looks somewhat bizarre. I truly enjoy the technical aspects of it but tend to hide my arm when I am not wearing long sleeved shirts. I do appreciate the access it will provide for my future dialysis but the oddness of it's appearance and the weird feeling of the blood flowing through it and the 'folding' of the tube when I bend my arm make me uncomfortable.
I have always been proud of what I felt was an above average base level of fitness. I ran my first 5k in late summer of 2010 and had done no running at all that year but still got a respectable (for a first timer) time of 28 minutes. I have always been able to hop on my bike and keep up with average cyclists without much trouble but have never been exceptional. Playing two back to back games of hockey wasn't an issue and even a third was possible at times.
Needless to say, my base level of fitness has been significantly reduced. My hemoglobin has now hit a new high recently of 10.1. That is still 1/3 less than my base level 3 years ago but it is significantly improved from the low of 7.7 I hit 3 months ago. My wife and I took a short hike up Spruce Mountain today and, even though we cut it short at just 4 miles and 600 feet of vertical, I was exhausted at the end. I would love to return to an average level of fitness but that simply is not going to happen again.
Of course, do I need to say anything about hospitals? Hospital gowns and I have spent way too much time together and some of the tests I have received have felt humiliating. I have gotten quite used to life in a hospital and even the gowns have become something that I don't mind too much anymore but the general idea of them is not something I relish.
Future degradations are coming as well. Sometime I am going to get a permanent tap to drain my lungs and that will be a tube hanging out of my side. Sometime, I am probably going to need to get percutaneous nephrostomy tubes and will have those tubes hanging out my back near my waist. Other things are probably coming as well and I am sure that they are not going to be high on the list of fashion accessories.
All this said, I wouldn't change a thing. I pass 13 years post diagnosis at the end of this month and still see several years ahead of me. Each of these things that have taken some of my self image away have been followed up by more years with my wife and kids. I hate my colostomy but, without it, I would die. I hate my AV graft but it will keep me alive. I hate my weakness but love that I can still walk, play hockey, and do some physical activity. I would do them all over again for the years that they have given me. Life is too important to worry about things like vanity.
Saturday, September 27, 2014
U is for Upside
Everything that happens seems to have an upside and a down side, even when it comes to cancer. I have written much about the downside of cancer, so I thought I would write about the upside to my particular disease.
First, I get out of a lot of work. Admittedly, I have to make up hours (other than the 1100 hours I took off from 4/2012-1/2013, using short and long term disability) and frequently work long days to account for the time off, I still get to frequently leave work early and no one will question why. About a month or so ago, I had my octreoscan and that involves getting an injection at about 10:00 and then returning for the scan at about 2:00. I took advantage of this and went and saw a movie that I knew Stephanie did not want to see. Middle of the day movie theaters are quite sparse and you really get your choice of seats.
Another advantage is the 'Cancer card'. When I first started working out here in Colorado Springs, people joked about the kid card. Gotta leave work early for soccer practice (kid card). Had to stay home late to take the kids to the dentist (kid card). Don't want to go to that work gathering? Kid card!
Cancer cards work the same way but, unlike the kid card that often drew resentment, cancer cards draw sympathy! Party is boring? Cancer card, not feeling well tonight... Need an excuse to not go to that gathering? Cancer card. Got sat next to the really annoying person? Cancer card! Of course, now that I have talked about it, it will be a bit less effective... I really don't pull out the cancer card too often but it is wonderful having a ready made excuse for almost anything! :-)
Travel. I had never been to New Orleans before having cancer and it is one of those places that is fun to visit. Stephanie and I have been there many times over the past few years and have gotten to explore much about that city and the area around it. Of course, it does tend to take some of the magic out of the trip when you are there for treatment, or surgery, or to try and find out what can be done but it still is fun to have those trips together.
My cancer is one of very slow growing ones. Fortunately, I do have doctors that consider it cancer (some fellow carcinoid sufferers have been told that they don't have 'real' cancer) and I have been able to have it treated relatively well. The side affects of the medicines I have had to take are minimal to non-existent and the cancer has, up until this year, not really interfered with normal life. I still have my hair, I have not had the extreme nausea that some experience from chemo, and I have had 12.5 years of living what most would consider a very normal life of skiing, cycling, and activities with the kids.
Cancer still sucks but there are upsides. I don't know if I would be writing this if I had a pancreatic cancer or something extreme like that but I am lucky and there are silver linings that I can see.
First, I get out of a lot of work. Admittedly, I have to make up hours (other than the 1100 hours I took off from 4/2012-1/2013, using short and long term disability) and frequently work long days to account for the time off, I still get to frequently leave work early and no one will question why. About a month or so ago, I had my octreoscan and that involves getting an injection at about 10:00 and then returning for the scan at about 2:00. I took advantage of this and went and saw a movie that I knew Stephanie did not want to see. Middle of the day movie theaters are quite sparse and you really get your choice of seats.
Another advantage is the 'Cancer card'. When I first started working out here in Colorado Springs, people joked about the kid card. Gotta leave work early for soccer practice (kid card). Had to stay home late to take the kids to the dentist (kid card). Don't want to go to that work gathering? Kid card!
Cancer cards work the same way but, unlike the kid card that often drew resentment, cancer cards draw sympathy! Party is boring? Cancer card, not feeling well tonight... Need an excuse to not go to that gathering? Cancer card. Got sat next to the really annoying person? Cancer card! Of course, now that I have talked about it, it will be a bit less effective... I really don't pull out the cancer card too often but it is wonderful having a ready made excuse for almost anything! :-)
Travel. I had never been to New Orleans before having cancer and it is one of those places that is fun to visit. Stephanie and I have been there many times over the past few years and have gotten to explore much about that city and the area around it. Of course, it does tend to take some of the magic out of the trip when you are there for treatment, or surgery, or to try and find out what can be done but it still is fun to have those trips together.
My cancer is one of very slow growing ones. Fortunately, I do have doctors that consider it cancer (some fellow carcinoid sufferers have been told that they don't have 'real' cancer) and I have been able to have it treated relatively well. The side affects of the medicines I have had to take are minimal to non-existent and the cancer has, up until this year, not really interfered with normal life. I still have my hair, I have not had the extreme nausea that some experience from chemo, and I have had 12.5 years of living what most would consider a very normal life of skiing, cycling, and activities with the kids.
Cancer still sucks but there are upsides. I don't know if I would be writing this if I had a pancreatic cancer or something extreme like that but I am lucky and there are silver linings that I can see.
Saturday, September 20, 2014
T is for Terrified
Terrified comes courtesy of my wife as I could not think of what to do for T. Terrified fits the bill and fits the sequence.
I normally don't get scared much about procedures, surgeries, the future or my situation. That said, I get caught up in the occasional panic about any of the above. I have fairly routine minor surgeries quite frequently now with the repeated stent swaps. We seem to have minor surgery fairly well under control and the use of Propofol for these short procedures seems to avoid carcinoid crisis. I know surgery is always risky but we have a handle on how to manage my complications.
I still get a bit anxious prior to these procedures at times. Often times, it is when the nurses are putting in my IV that I start to panic some and I need my wife at my side to support me and reassure me. The panic usually passes quickly but I get caught up in just not wanting to go through these procedures again.
Octreoscans are fairly routine as well. I lay on a table for a one hour stretch for one scan and then another 40 minutes for the second scan. Usually this is very relaxing and I often fall asleep during the scans and need to make sure I don't flinch too much when I wake up, distorting the scan.
Last year, I had a stretch where my shoulder started acting up again and laying on that hard table would make my shoulder hurt painfully and would make it hard to lay still. Percocet can make the pain go away but, again, I need to rely on the company of my wife to get me through these stretches.
A few months ago, terror hit a new high note when my lung started causing problems. I get scared about how long I have left with my family and begin to focus on all the things that I will miss. This stretch of terror lasted for a few weeks which is highly unusual for me (usually, I get over it in a couple of days) and I think it is because the lungs were new territory for my cancer. Again, Stephanie made things better and helped me come back down, comforting me when things really started getting crazy.
On a side note, we are kind of putting the lungs on the back burner for now and just monitoring them. They are not likely to be the reason I eventually succumb to this disease but they are certainly going to interfere with my life. We saw my oncologist this past Friday and he said that with moderate to severe anemia, stage 4 kidney disease, partially collapsed lung, pleural effusion on the right lung, and liver involvement, he cannot recommend any more extreme skiing. I am still going to try to do all I can and I will be taking my time but I will be skiing double diamonds this year, just no more hike to terrain anymore.
I try not to let the terror overwhelm me but it sometimes does. Others help bring my terror level down, particularly my beautiful wife. The kids help although I try not to let them see me when I am at my most scared points. River can be so kind and Riley and Forrest are great at just sitting with me or lightly rubbing my back.
Terror can help drive us to act but we cant let it take over our lives. We need to use it to help us move forward and ensure that it does not hold us back. Life is good and I need to keep that in mind. It has now been over 13 years since my first critical symptoms of this disease started appearing and I need to enjoy all that I still have in front of me.
I normally don't get scared much about procedures, surgeries, the future or my situation. That said, I get caught up in the occasional panic about any of the above. I have fairly routine minor surgeries quite frequently now with the repeated stent swaps. We seem to have minor surgery fairly well under control and the use of Propofol for these short procedures seems to avoid carcinoid crisis. I know surgery is always risky but we have a handle on how to manage my complications.
I still get a bit anxious prior to these procedures at times. Often times, it is when the nurses are putting in my IV that I start to panic some and I need my wife at my side to support me and reassure me. The panic usually passes quickly but I get caught up in just not wanting to go through these procedures again.
Octreoscans are fairly routine as well. I lay on a table for a one hour stretch for one scan and then another 40 minutes for the second scan. Usually this is very relaxing and I often fall asleep during the scans and need to make sure I don't flinch too much when I wake up, distorting the scan.
Last year, I had a stretch where my shoulder started acting up again and laying on that hard table would make my shoulder hurt painfully and would make it hard to lay still. Percocet can make the pain go away but, again, I need to rely on the company of my wife to get me through these stretches.
A few months ago, terror hit a new high note when my lung started causing problems. I get scared about how long I have left with my family and begin to focus on all the things that I will miss. This stretch of terror lasted for a few weeks which is highly unusual for me (usually, I get over it in a couple of days) and I think it is because the lungs were new territory for my cancer. Again, Stephanie made things better and helped me come back down, comforting me when things really started getting crazy.
On a side note, we are kind of putting the lungs on the back burner for now and just monitoring them. They are not likely to be the reason I eventually succumb to this disease but they are certainly going to interfere with my life. We saw my oncologist this past Friday and he said that with moderate to severe anemia, stage 4 kidney disease, partially collapsed lung, pleural effusion on the right lung, and liver involvement, he cannot recommend any more extreme skiing. I am still going to try to do all I can and I will be taking my time but I will be skiing double diamonds this year, just no more hike to terrain anymore.
I try not to let the terror overwhelm me but it sometimes does. Others help bring my terror level down, particularly my beautiful wife. The kids help although I try not to let them see me when I am at my most scared points. River can be so kind and Riley and Forrest are great at just sitting with me or lightly rubbing my back.
Terror can help drive us to act but we cant let it take over our lives. We need to use it to help us move forward and ensure that it does not hold us back. Life is good and I need to keep that in mind. It has now been over 13 years since my first critical symptoms of this disease started appearing and I need to enjoy all that I still have in front of me.
Saturday, September 13, 2014
S is for Schedule
Prior to having cancer, something I would have never considered being an issue is scheduling appointments. Cancer and the associated health failings I have experienced have really created some serious issues with scheduling all the various appointments and procedures.
When I first was diagnosed, I was placed on two separate treatments, Interferon-2alpha and Sandostatin LAR. The interferon was given on a weekly schedule and I dropped by the hospital once a week at about 4:00 for my shot while Sandostatin-LAR came every 4 weeks and was given at the same time. Scheduling wise, this was fairly simple as the visits showed up at the same time and my doctors appointments were overloaded with the sandostatin/interferon appointments.
This was quite easy to manage as everything happened on Thursday afternoons. The only hard part was remembering whether or not I had an additional doctors appointment for that particular Thursday. After the first two years, I began giving myself the Interferon injections to myself and I now only had to go to the doctors office every 4 weeks.
Stephanie and I found it quite funny when we saw a recent commercial for a new heart medication. The commercial talked about how the new medication no longer required a monthly blood test. Monthly? Really? Blood tests can be done almost anywhere and there are labs or clinics in most cities and small towns that can perform this service. Once a month? Wow, what I wouldn't give to be back on the once a months schedule again.
Things have gotten quite a bit more hairy lately with the degradation of my kidneys and a 'normal' set of appointment now include:
When I first was diagnosed, I was placed on two separate treatments, Interferon-2alpha and Sandostatin LAR. The interferon was given on a weekly schedule and I dropped by the hospital once a week at about 4:00 for my shot while Sandostatin-LAR came every 4 weeks and was given at the same time. Scheduling wise, this was fairly simple as the visits showed up at the same time and my doctors appointments were overloaded with the sandostatin/interferon appointments.
This was quite easy to manage as everything happened on Thursday afternoons. The only hard part was remembering whether or not I had an additional doctors appointment for that particular Thursday. After the first two years, I began giving myself the Interferon injections to myself and I now only had to go to the doctors office every 4 weeks.
Stephanie and I found it quite funny when we saw a recent commercial for a new heart medication. The commercial talked about how the new medication no longer required a monthly blood test. Monthly? Really? Blood tests can be done almost anywhere and there are labs or clinics in most cities and small towns that can perform this service. Once a month? Wow, what I wouldn't give to be back on the once a months schedule again.
Things have gotten quite a bit more hairy lately with the degradation of my kidneys and a 'normal' set of appointment now include:
- Oncologist every 6 weeks
- Nephrologist every 4-6 weeks
- Aranisp injection every 2 weeks
- Sandostatin LAR injection every 3 weeks
- Hemoglobin and Hematocrit blood draw 3 days before every Aranisp injection
- Basic metabolic panel 5 days before Nephrologist appointment
- Urologist appointment every 8 weeks
- Ultrasound of AV graft with vascular surgeon appointment every 3 months
With my work out at Schriever, it is a minimum of 45 minutes (and often a full hour) to get to or from work for any of these appointments which means an appointment can take 2.5 hours out of the middle of a work day. I try to make sure they are either late in the day or early in the morning but doctors and their staff are not always accommodating (11:30 appointments almost ruin the whole day).
On top of this, there are a continuum of other appointments and procedures. In the last 3 months, I have additionally had
On top of this, there are a continuum of other appointments and procedures. In the last 3 months, I have additionally had
- a CT scan
- an Octroscan (takes 1.5 workdays)
- Ultrasound of the kidneys
- bilateral stent swap (2 work days)
- Complete metabolic panel blood draw
- Infusion of two units of whole blood (one work day)
- Carcinoid blood draw
- Redraw of a messed up H&H blood draw
- Appointments with an infectious disease doctor
- Blood draws to rule out blood infection
- 'Normal' dentist appointment
- Emergency dentist appointment for cracked tooth (replaced with crown)
- Several chest x-rays
- Lung tap to drain fluid
Next week and the following week, I will also have iron infusions. It just drives me crazy trying to keep up with what appointment I am supposed to be going to today and how I am supposed to get my 40 hours of work in this week. I have been doing 10 hour days followed by 4 hour days and days off to get all my hours in during each pay period, often coming up short and having to use PTO. No one can say that I don't take advantage of all the health benefits available and the fact I won't die is, I am sure, an annoyance to the insurance company!
I have been extremely fortunate that my work schedule is fairly flexible and Metron has been flexible with my time as well. I have just crested 80 hours of PTO and am relieved since that puts me past the point necessary to go on short term disability when/if I have my next surgery. Of course, ski season is coming and I am going to want even more of that PTO for fun!
Both Stephanie and I keep my schedule both on her phone and on my work calendar. With Riley in high school soccer, Forest in club soccer, and River in club swimming, we usually need to sit down on Sunday and discuss who is picking up whom and at what time and how this fits in with my doctor appointments. Four drivers with three cars helps quite a bit but, even then, the kids are forced to look for rides with friends.
Yeah, I know it sounds like whining (and maybe it is) but does require quite a bit of planning to manage all of these appointments. This is, somewhat, just what happens when you get old or ill but I am extremely thankful that I am still able to work in spite of all the appointments!
Yeah, I know it sounds like whining (and maybe it is) but does require quite a bit of planning to manage all of these appointments. This is, somewhat, just what happens when you get old or ill but I am extremely thankful that I am still able to work in spite of all the appointments!
Saturday, September 6, 2014
R is for React
Reacting is something I do every time I get new results that throw me a curveball and I often overreact. I want to do something. I want to be active in treatment and I want to do everything I can to address the new results.
The downside is that I often don't have a full picture when I get these results or run into this curveball and I start to speculate without full information. The internet is fantastic for getting information but we often don't have sufficient knowledge to put that information in context. This is partially due to my lack of medical training and partially due to the amount of information that is available.
Two recent examples of this are my failing kidneys and my collapsed lung. With respect to the kidneys, I had myself on dialysis 6 months ago. I was certain that they were ready to completely fail immediately and that I was going to need dialysis for managing that failure. Here we are, almost 10 months later and I am still not on dialysis. I am ready for the machine when that time comes and have a fairly good understanding of what it involves but, at least for now, my kidneys are in a stable state although frequent stent changes have been required.
My lungs are a similar story. About a year ago, we first noticed something on my lungs and had come to a conclusion that it was probably a rounded atelectesis. This seemed reasonable and we just continued to monitor. About 6 months ago, a CT scan showed that the area was growing and that then meant that we almost certainly had some sort of cancer. 'Normal' lung cancer had no blood test or other method of verifying other than obtaining a sample and the area of the lungs gave a low probability of obtaining a sample.
A couple of months ago, part of my lung collapsed and the bloody pleura almost certainly indicated some sort of metastases. The pulminologist did not suggest any solutions other than going home to wait to die and that news hit me very hard. I passed this news on and then hit the net for information on what can be done. Finding that surgery was an option, I was then certain that I was going to have surgery immediately but, here I am, months later, still without any direct plan on what we will be doing.
What I do know is that an octroscan shows activity in the area of my right lung. Of course, the way an octroscan is done, it is difficult to determine if the reaction is in the lung or the pleura of the lung. Given the CT results, I am fairly certain we know that it is in the lungs. Next week, the New Orleans group will be discussing my results and we will find out what we do at that point. Surgery is still on the table at some point because we need to either address the cancer or the continued return of lung compressing fluid.
Reaction is natural but it is something that I need to contain those feelings. Obviously, one can go too far with lack of reaction and not respond enough. Somehow, Stephanie and I need to strike a balance between over-reacting and ignoring the results. If I had to pick a side on which to err, it will always be over-reacting because at least then I feel as if I am doing something.
The downside is that I often don't have a full picture when I get these results or run into this curveball and I start to speculate without full information. The internet is fantastic for getting information but we often don't have sufficient knowledge to put that information in context. This is partially due to my lack of medical training and partially due to the amount of information that is available.
Two recent examples of this are my failing kidneys and my collapsed lung. With respect to the kidneys, I had myself on dialysis 6 months ago. I was certain that they were ready to completely fail immediately and that I was going to need dialysis for managing that failure. Here we are, almost 10 months later and I am still not on dialysis. I am ready for the machine when that time comes and have a fairly good understanding of what it involves but, at least for now, my kidneys are in a stable state although frequent stent changes have been required.
My lungs are a similar story. About a year ago, we first noticed something on my lungs and had come to a conclusion that it was probably a rounded atelectesis. This seemed reasonable and we just continued to monitor. About 6 months ago, a CT scan showed that the area was growing and that then meant that we almost certainly had some sort of cancer. 'Normal' lung cancer had no blood test or other method of verifying other than obtaining a sample and the area of the lungs gave a low probability of obtaining a sample.
A couple of months ago, part of my lung collapsed and the bloody pleura almost certainly indicated some sort of metastases. The pulminologist did not suggest any solutions other than going home to wait to die and that news hit me very hard. I passed this news on and then hit the net for information on what can be done. Finding that surgery was an option, I was then certain that I was going to have surgery immediately but, here I am, months later, still without any direct plan on what we will be doing.
What I do know is that an octroscan shows activity in the area of my right lung. Of course, the way an octroscan is done, it is difficult to determine if the reaction is in the lung or the pleura of the lung. Given the CT results, I am fairly certain we know that it is in the lungs. Next week, the New Orleans group will be discussing my results and we will find out what we do at that point. Surgery is still on the table at some point because we need to either address the cancer or the continued return of lung compressing fluid.
Reaction is natural but it is something that I need to contain those feelings. Obviously, one can go too far with lack of reaction and not respond enough. Somehow, Stephanie and I need to strike a balance between over-reacting and ignoring the results. If I had to pick a side on which to err, it will always be over-reacting because at least then I feel as if I am doing something.
Saturday, August 30, 2014
Q is for Quack
When you have cancer, it is guaranteed that you will have many people offering up advice on home remedies, specialized diets, or miracle cures that will cure your cancer. Most of these people are well meaning and I always accept their advice with a smile and an appreciative thank you but people do need to realize that many of the cures are also scams.
Cancer patients are just another group of people that can be caught up in scams because they have a desire to know they tried everything. I know there are cures out there that have not been found by science and some of these are just 'normal' herbal cures but the likelihood of finding these is becoming smaller and smaller.
Here is a great link to 10 myths about cancer and I have been told about two thirds of these myths over the past 13 years. I didn't get cancer because I ate too much sugar nor did I get cancer because I did not eat enough acidic foods. I got cancer because my neuroendocrine cells mutated in just the right fashion to allow uncontrolled growth along with not enough mutation to be detected by my immune system. It was chance and I just drew the short straw.
Science now knows that cancer is not a single disease like polio or even aids. Cancer is a general term that simply describes some sort of uncontrolled growth inside your body. Breast cancer is as similar to carcinoid cancer, pancreatic cancer, or lung cancer as the common cold is to the flu. Cures for one almost never lead to cures for the other. In fact, not even all breast cancers are the same. There are cures that work well or certain variations and are completely useless for other variations.
My own carcinoid cancer is different from other carcinoid cancers. My tumors don't respond to Temodar and Xeloda but other people get a dramatic (although somewhat short term) response to those drugs. Some carcinoids grow exceptionally slowly, others grow extremely rapidly. Some folks with carcinoid experience severe and frequent flushing while others enjoy spectacular diarrhea.
There is not ever going to be a general cure for cancer and anyone who tells you so is trying to scam you. There are going to be cures for some specific cancers and there even may be some cures that address many cancers but nothing is going to cure all of them.
This does not mean research is in vain. There have been some amazing instances of complete cures lately using programed aids viruses and there have been great advances in simply extending life and reducing pain and suffering. People are living longer and many cancers are indeed completely cured and I continue to contribute to research for research into cancer cures.
Will my cancer be cured? Maybe, but not in time to help me. 50 years from now? Perhaps they will have new techniques that will be able to eradicate the disease in many carcinoids. I believe the techniques using programmed aids viruses really have potential and, with enough time, it will cure many more cancers than we can cure today. I have been fortunate to have a slow progressing cancer and just hope to live long enough to see some of these new techniques succeed more than they fail.
Saturday, August 23, 2014
P is for Perception
Perception. What is a cancer patient supposed to look like? How do others perceive me? How do I perceive myself? These questions affect me all the time.
I see others in the infusion room that are my standard perception of what a cancer patient is supposed to look like. I see people with ravaged bodies, devoid of any body hair. I see people covered in blankets while the poison drips into their blood. I people comforting and trying to help their loved ones through this horrible time. I don't see myself in that place. I feel odd, bopping into this room, relatively upbeat, walking with no problems and receiving my shot with no side affects. I feel out of place in this room, as if I don't belong and that these are the real cancer patients and I am just a poser.
I worry about how others perceive me. I know it probably seems conceited for a 47 year old man to worry about how others look at him but I have a problem with my (almost certainly incorrect) perception of how others perceive me. I feel people expect me to be strong and to bear up under the pressures of the disease. I worry that others question the legitimacy of my disease because I, at first glance, look to be be quite normal and healthy. I want others to know that I still suffer and my disease is not just sunshine and rainbows but, at the same time, I hate the idea that others know that I suffer.
I am stressed by the changes that the cancer has wrought on my body. I have lost 30 pounds and dropped two inches off of my waist and feel like I have lost what little muscle mass I once had. I am nervous in the locker room before a hockey game that others who don't know will see my colostomy bag and behave exactly like guys with no manners often behave. I am nervous about the possibilities of more bags and tubes as my disease advances and yet more locker room issues. I hate the look of the AV graft in my arm and the bizarre shape that it makes under my skin and don't want others to see it.
I perceive myself in different ways at different times. I perceive myself as a weakling when I need to have my wife drag my goalie gear bag to the car after an exceptionally tough game. I perceive myself as a strong person when I struggle to walk fifty feet in the ICU after 3 days of surgery. I perceive myself as disfigured when I see the body modifications that have changed my body from what seemed 'normal' to somewhat bizarre or freakish.
I perceive myself as an example to others when I continue to play hockey, attempt to ride my bike, and put in a 40 hour work week. I perceive myself as a success when I make it through yet another surgery or tolerate another treatment. I perceive myself as a failure when I need to pull the door shut at work because my emotions are getting the best of me.
Perceptions are almost certainly wrong. I know people usually don't see me or the things that I am worried about and I am a classic example of the spotlight effect. I know I need to be less concerned about perceptions and just move forward, being who I am but it is hard.
We all want others to think the best of us and sometimes the perceptions can get overwhelming. I will try to continue to stand tall and do my best to ignore the negative perceptions I have of myself and that I imagine others have of me. I am who I am. I am strong when I can and I have others to help me when I am weak. I need to learn to accept both as part of me and who I am.
I see others in the infusion room that are my standard perception of what a cancer patient is supposed to look like. I see people with ravaged bodies, devoid of any body hair. I see people covered in blankets while the poison drips into their blood. I people comforting and trying to help their loved ones through this horrible time. I don't see myself in that place. I feel odd, bopping into this room, relatively upbeat, walking with no problems and receiving my shot with no side affects. I feel out of place in this room, as if I don't belong and that these are the real cancer patients and I am just a poser.
I worry about how others perceive me. I know it probably seems conceited for a 47 year old man to worry about how others look at him but I have a problem with my (almost certainly incorrect) perception of how others perceive me. I feel people expect me to be strong and to bear up under the pressures of the disease. I worry that others question the legitimacy of my disease because I, at first glance, look to be be quite normal and healthy. I want others to know that I still suffer and my disease is not just sunshine and rainbows but, at the same time, I hate the idea that others know that I suffer.
I am stressed by the changes that the cancer has wrought on my body. I have lost 30 pounds and dropped two inches off of my waist and feel like I have lost what little muscle mass I once had. I am nervous in the locker room before a hockey game that others who don't know will see my colostomy bag and behave exactly like guys with no manners often behave. I am nervous about the possibilities of more bags and tubes as my disease advances and yet more locker room issues. I hate the look of the AV graft in my arm and the bizarre shape that it makes under my skin and don't want others to see it.
I perceive myself in different ways at different times. I perceive myself as a weakling when I need to have my wife drag my goalie gear bag to the car after an exceptionally tough game. I perceive myself as a strong person when I struggle to walk fifty feet in the ICU after 3 days of surgery. I perceive myself as disfigured when I see the body modifications that have changed my body from what seemed 'normal' to somewhat bizarre or freakish.
I perceive myself as an example to others when I continue to play hockey, attempt to ride my bike, and put in a 40 hour work week. I perceive myself as a success when I make it through yet another surgery or tolerate another treatment. I perceive myself as a failure when I need to pull the door shut at work because my emotions are getting the best of me.
Perceptions are almost certainly wrong. I know people usually don't see me or the things that I am worried about and I am a classic example of the spotlight effect. I know I need to be less concerned about perceptions and just move forward, being who I am but it is hard.
We all want others to think the best of us and sometimes the perceptions can get overwhelming. I will try to continue to stand tall and do my best to ignore the negative perceptions I have of myself and that I imagine others have of me. I am who I am. I am strong when I can and I have others to help me when I am weak. I need to learn to accept both as part of me and who I am.
Sunday, August 17, 2014
O is for Oncologist
Coming up on 13 years in and I have had many oncologists over my treatment. I started out with Dr. Reznick for the first two years here in Colorado Springs and then switched to Dr. Young as Dr. Reznick moved to another practice. Dr. Young did a wonderful job over the next years, guiding treatment and taking advice from other experts around the country and worked in partnership with them and me in my treatment.
There is where I wanted to take this post. All medicine should never be a one way street between you and the doctor. You should never go to the doctor and accept everything he says as the gospel handed down from on high. Doctors know so much but they are indeed limited in their knowledge.
Medicine should be a partnership between you and those treating you. You need to take what the doctor has told you and use that information as the start of your treatment. The doctor will miss things and you need to participate in your treatment so that you are fully aware of what is being done for you and with you.
I have several cases of mistakes over my 13 years of treatment. Prior to my first diagnosis, the physician's assistant (PA) got hung up on irritable bowel disease and did not pay attention to some of the symptoms such as early evacuation of meals and loss of weight. My first oncologist stated that he felt I was cured of this disease after 1.5 years of treatment when all the literature states that metastatic carcinoid cancer is not curable.
I have had other PA's not pay attention to the type of bacteria for an infection and prescribe a ineffective antibiotic and I have had doctors prescribe medicines that were counter indicated for some of my other problems. We have so much information at our fingertips that we can now search and make ourselves knowledgeable prior, during, and after treatment.
The downside to this information is that it can scare us, causing misleading information to confuse and mislead us and I do this all the time. The recent partial collapse of my right lung and the bloody pleural eflusion caused me to go into a panic and visions of an early death. Is this something to worry about? Certainly but I need to relax and combine the information that my doctors give me along with the information that I am able to glean from the literature.
Your doctor is your expert. He should be the one that sets you on a path. You need to ensure that the path is something you understand, something you agree with, and something you support. When you bring your car in for repairs, the mechanic there is the expert and you work with him to determine what is the proper treatment. You body is no different other than being a bit more precious.
Listen, learn, understand, and live.
There is where I wanted to take this post. All medicine should never be a one way street between you and the doctor. You should never go to the doctor and accept everything he says as the gospel handed down from on high. Doctors know so much but they are indeed limited in their knowledge.
Medicine should be a partnership between you and those treating you. You need to take what the doctor has told you and use that information as the start of your treatment. The doctor will miss things and you need to participate in your treatment so that you are fully aware of what is being done for you and with you.
I have several cases of mistakes over my 13 years of treatment. Prior to my first diagnosis, the physician's assistant (PA) got hung up on irritable bowel disease and did not pay attention to some of the symptoms such as early evacuation of meals and loss of weight. My first oncologist stated that he felt I was cured of this disease after 1.5 years of treatment when all the literature states that metastatic carcinoid cancer is not curable.
I have had other PA's not pay attention to the type of bacteria for an infection and prescribe a ineffective antibiotic and I have had doctors prescribe medicines that were counter indicated for some of my other problems. We have so much information at our fingertips that we can now search and make ourselves knowledgeable prior, during, and after treatment.
The downside to this information is that it can scare us, causing misleading information to confuse and mislead us and I do this all the time. The recent partial collapse of my right lung and the bloody pleural eflusion caused me to go into a panic and visions of an early death. Is this something to worry about? Certainly but I need to relax and combine the information that my doctors give me along with the information that I am able to glean from the literature.
Your doctor is your expert. He should be the one that sets you on a path. You need to ensure that the path is something you understand, something you agree with, and something you support. When you bring your car in for repairs, the mechanic there is the expert and you work with him to determine what is the proper treatment. You body is no different other than being a bit more precious.
Listen, learn, understand, and live.
Sunday, August 10, 2014
N is for Nurse
Doctors often get all the glory but the nurses are where treatment really is experienced. Doctors generally do a good job of diagnosing, prescribing treatment, and managing drugs but it is the nurses that deliver all of these things to you. They do it day in and day out, seeing you at your best and at your worst in the hospital, recovery rooms, and at the doctor's offices.
After surgeries in New Orleans, all patients wake up in the intensive care unit. The ICU never has more than two patients per nurse and often, just one nurse for each patient. I imagine that this is often the case for most hospitals but the care that I have received from these nurses has always been phenomenal. I remember one night in the ICU where I had swallowed a rather large pill while still having an NG tube in my stomach.
The nurse turned off the suction while I took the medicine but I was absolutely convinced that the pills were still stuck in my throat. I know that it as almost certainly the NG tube that was causing those feelings but the combination of ICU insanity and medication made me a bit unstable. The nurse sat with me for several hours as I struggled with a complete lack of sleep and a certainty that I was going to choke.
They have gone to great lengths to try and make sure I am as comfortable as possible in the ICU where comfort is almost the opposite of what you experience here. The ICU is full of beeping lights, blood pressure cuffs every 15 minutes, checkups every 2 hours and general noise of continual activity. One stay in the ICU had a door outside my room that (in my perspective) kept slamming. The charge nurse put a sign on that door, telling everyone to not let the door fall shut but close it gently instead and it helped quite a bit with what little sleep I was able to get.
After being released from the ICU, I go up to a regular room for another couple of days and there are nurses there that have taken wonderful care of me. They are always ensuring that I have sufficient ice water to drink, I have juice when I am not NPO, and they find medicine to help me sleep and survive the final stretch in the hospital.
The same kindness is seen in nurses throughout my treatment over the years. Nurses at the oncologists' office know me by sight and ask about the family and other things going on in my life. They are on top of my my treatment and always greet me with a smile. Remember your nurses and thank them.
After surgeries in New Orleans, all patients wake up in the intensive care unit. The ICU never has more than two patients per nurse and often, just one nurse for each patient. I imagine that this is often the case for most hospitals but the care that I have received from these nurses has always been phenomenal. I remember one night in the ICU where I had swallowed a rather large pill while still having an NG tube in my stomach.
The nurse turned off the suction while I took the medicine but I was absolutely convinced that the pills were still stuck in my throat. I know that it as almost certainly the NG tube that was causing those feelings but the combination of ICU insanity and medication made me a bit unstable. The nurse sat with me for several hours as I struggled with a complete lack of sleep and a certainty that I was going to choke.
They have gone to great lengths to try and make sure I am as comfortable as possible in the ICU where comfort is almost the opposite of what you experience here. The ICU is full of beeping lights, blood pressure cuffs every 15 minutes, checkups every 2 hours and general noise of continual activity. One stay in the ICU had a door outside my room that (in my perspective) kept slamming. The charge nurse put a sign on that door, telling everyone to not let the door fall shut but close it gently instead and it helped quite a bit with what little sleep I was able to get.
After being released from the ICU, I go up to a regular room for another couple of days and there are nurses there that have taken wonderful care of me. They are always ensuring that I have sufficient ice water to drink, I have juice when I am not NPO, and they find medicine to help me sleep and survive the final stretch in the hospital.
The same kindness is seen in nurses throughout my treatment over the years. Nurses at the oncologists' office know me by sight and ask about the family and other things going on in my life. They are on top of my my treatment and always greet me with a smile. Remember your nurses and thank them.
Saturday, August 2, 2014
M is for Mole and Memories
Two words this week and I hope I will be able to bring them together for you.
Mole. I have one on the back of my neck and it has been there for as long as I can remember. Occasionally, whomever is cutting my hair will catch it when cleaning up the back of my neck with a shaver but, most of the time, I have never thought much about it.
About 10 years ago or so, I remember one of my children pointing at it and asking what it was. Without a second thought, I told them 'It is my button'. Naturally they asked me what it did and I did not know what to say so I told them to push it and find out. Of course, that is exactly what they did and I had to make a decision as to what the button did.
Well, the only thing that came to mind at the time was to make a noise so I just made some random (and loud) sound which surprised everyone, myself included. Of course, as soon as their shock and laughter died down slightly, my button was pushed again and I made another, different, and louder sound. Of course, now all the kids needed to get in on the action and I had yet another problem of continual pushing of the button and the associated noise.
Being quick thinking for one of the first times in my life, I let them know that the button only worked twice per child, every day or hour (memory fails me as to what the actual time limit was). The button worked anywhere, be it at the dinner table, while fishing, sitting at church, or just relaxing on the couch. I had to come up with different sounds, sometimes, looking like it was going to be quite loud and then just emitting a quiet beep or cough. Other times, I would bray like a donkey at the dinner table, much to the dismay of my wife.
My kids don't push the button much anymore but Forrest still thinks of it every once in a while and pushes it just to hear what odd sound comes out of my mouth. But they still remember the button. They remember that as something special that they had with dad and with no one else. My hope is that, 10 or 20 years from now, when they have their kids, they will find their 'button'. It may not be something like the mole on the back of my neck or a mark on their leg but it will be something special just between them and their kids.
All those years from now, I hope that they remember dad and his button. I hope that they create these special connections with their kids. Money is always nice and makes living easier but nothing lasts and makes a mark like a memory. They may not remember this exact memory but they will remember other things that we have done and experienced together.
Perhaps it will be that school day we played hooky together and spent the day in the powder or it may be the day we spent fishing together. Perhaps it may even be a shared appreciation for horrible puns or math. I don't know what it will but I want them to have a broad range of choices as to what stands out and what they look back on with fond appreciation.
Mole. I have one on the back of my neck and it has been there for as long as I can remember. Occasionally, whomever is cutting my hair will catch it when cleaning up the back of my neck with a shaver but, most of the time, I have never thought much about it.
About 10 years ago or so, I remember one of my children pointing at it and asking what it was. Without a second thought, I told them 'It is my button'. Naturally they asked me what it did and I did not know what to say so I told them to push it and find out. Of course, that is exactly what they did and I had to make a decision as to what the button did.
Well, the only thing that came to mind at the time was to make a noise so I just made some random (and loud) sound which surprised everyone, myself included. Of course, as soon as their shock and laughter died down slightly, my button was pushed again and I made another, different, and louder sound. Of course, now all the kids needed to get in on the action and I had yet another problem of continual pushing of the button and the associated noise.
Being quick thinking for one of the first times in my life, I let them know that the button only worked twice per child, every day or hour (memory fails me as to what the actual time limit was). The button worked anywhere, be it at the dinner table, while fishing, sitting at church, or just relaxing on the couch. I had to come up with different sounds, sometimes, looking like it was going to be quite loud and then just emitting a quiet beep or cough. Other times, I would bray like a donkey at the dinner table, much to the dismay of my wife.
My kids don't push the button much anymore but Forrest still thinks of it every once in a while and pushes it just to hear what odd sound comes out of my mouth. But they still remember the button. They remember that as something special that they had with dad and with no one else. My hope is that, 10 or 20 years from now, when they have their kids, they will find their 'button'. It may not be something like the mole on the back of my neck or a mark on their leg but it will be something special just between them and their kids.
All those years from now, I hope that they remember dad and his button. I hope that they create these special connections with their kids. Money is always nice and makes living easier but nothing lasts and makes a mark like a memory. They may not remember this exact memory but they will remember other things that we have done and experienced together.
Perhaps it will be that school day we played hooky together and spent the day in the powder or it may be the day we spent fishing together. Perhaps it may even be a shared appreciation for horrible puns or math. I don't know what it will but I want them to have a broad range of choices as to what stands out and what they look back on with fond appreciation.
Friday, July 18, 2014
L is for Lungs
Just like my kidneys, I never worried about my lungs. Even 1.5 years ago when a 'rounded atelectasis' was seen on my lower right lung, I did not think much about it at all. I am thinking a lot about it now.
It has slowly grown over the last 1.5 years, leading us to believe that it is not a rounded atelectasis but, rather, a carcinoid metastases. We still did not worry too much about it until yesterday. I went in for my routine visit with my local oncologist and he listened to my chest and could not detect any breath sounds in my right lung and said that there was a 'dull' sound when he tapped on it.
After my visit, he had me get a chest x-ray immediately to try and identify the reason for the sounds and that x-ray showed that I had significant pleural effusion on the right lobe. That is a fancy way of saying that the sack that contains the lung had a large build-up of fluid that was causing some of my shortness of breath.
Well, Friday morning, I was quickly referred to a pulminologist (is there a specialist I haven't seen yet???) who inserted a needle into my lung and drained off some fluid. By some, I mean 1500 milliliters. That two liter bottle of soda you just got at the store; it was three quarters of that. When draining fluid, he never draws more than 1800 milliliters and draining fluid starts to hurt as it goes longer so I had him stop before it was done.
When you drain fluid off of the lungs, there are three possibilities. First, you can have clear fluid which is usually not caused by any critical event but the reason for the fluid still needs to be found. Second, it can be cloudy which usually means that there is an infection of some sort. Third, it can be bloody which indicates one of tuberculosis, heart issues, or cancer. While we don't have the official answer yet, you know, just like I do, why my fluid was bloody.
We then did another chest x-ray to ensure that he had not punctured the lung and got another surprise. My lower lobe did not inflate and the esophagus deflected to the right side. What this means is that the area that was cleared of fluid did not re-inflate the lung and that the vacuum that was created, pulled my internal organs to the right. This indicates that I now have a collapsed right lower lung and that is something that will not repair itself with time. We also still saw a significant amount of fluid in the pleura so there is more fluid that can be drained but the collapsed lung means there is not any point...
What do we do at this point? I don't know. I believe that a lobectomy can be performed to prevent the cancer from spreading further in the lung and I am going to schedule an appointment with my doctors in New Orleans to consult with them. I do know that the prognosis with lung carcinoid is similar to that of my abdominal carcinoid but don't know if that assumes resection of the diseased lung. I do know that fluid will continue to accumulate and that we can go back and drain it again if the shortness of breath gets too bad.
So, when you see me walking exceptionally slowly into or from work at the MDIOC, it is not because I am being lazy but because I am trying not to lose my breath. Lack of lung capacity means many of my goals are probably out of reach at this point (don't think being moderately to severely anemic and having 2/3 lung capacity doesn't match up well with 14,000 feet of elevation). I don't know what the prognosis is at this point. I don't know what path we are taking. I don't know what to expect in the future and I don't know how this affects other plans.
What I do know is that I'm not dead yet. It is coming. It is closer than it was before but that is true for you too. It sucks. It is not fair. It is not fun. I hope that I can continue to annoy you and everyone else for years to come and I am going to finish this alphabet and then some.
It has slowly grown over the last 1.5 years, leading us to believe that it is not a rounded atelectasis but, rather, a carcinoid metastases. We still did not worry too much about it until yesterday. I went in for my routine visit with my local oncologist and he listened to my chest and could not detect any breath sounds in my right lung and said that there was a 'dull' sound when he tapped on it.
After my visit, he had me get a chest x-ray immediately to try and identify the reason for the sounds and that x-ray showed that I had significant pleural effusion on the right lobe. That is a fancy way of saying that the sack that contains the lung had a large build-up of fluid that was causing some of my shortness of breath.
Well, Friday morning, I was quickly referred to a pulminologist (is there a specialist I haven't seen yet???) who inserted a needle into my lung and drained off some fluid. By some, I mean 1500 milliliters. That two liter bottle of soda you just got at the store; it was three quarters of that. When draining fluid, he never draws more than 1800 milliliters and draining fluid starts to hurt as it goes longer so I had him stop before it was done.
When you drain fluid off of the lungs, there are three possibilities. First, you can have clear fluid which is usually not caused by any critical event but the reason for the fluid still needs to be found. Second, it can be cloudy which usually means that there is an infection of some sort. Third, it can be bloody which indicates one of tuberculosis, heart issues, or cancer. While we don't have the official answer yet, you know, just like I do, why my fluid was bloody.
We then did another chest x-ray to ensure that he had not punctured the lung and got another surprise. My lower lobe did not inflate and the esophagus deflected to the right side. What this means is that the area that was cleared of fluid did not re-inflate the lung and that the vacuum that was created, pulled my internal organs to the right. This indicates that I now have a collapsed right lower lung and that is something that will not repair itself with time. We also still saw a significant amount of fluid in the pleura so there is more fluid that can be drained but the collapsed lung means there is not any point...
What do we do at this point? I don't know. I believe that a lobectomy can be performed to prevent the cancer from spreading further in the lung and I am going to schedule an appointment with my doctors in New Orleans to consult with them. I do know that the prognosis with lung carcinoid is similar to that of my abdominal carcinoid but don't know if that assumes resection of the diseased lung. I do know that fluid will continue to accumulate and that we can go back and drain it again if the shortness of breath gets too bad.
So, when you see me walking exceptionally slowly into or from work at the MDIOC, it is not because I am being lazy but because I am trying not to lose my breath. Lack of lung capacity means many of my goals are probably out of reach at this point (don't think being moderately to severely anemic and having 2/3 lung capacity doesn't match up well with 14,000 feet of elevation). I don't know what the prognosis is at this point. I don't know what path we are taking. I don't know what to expect in the future and I don't know how this affects other plans.
What I do know is that I'm not dead yet. It is coming. It is closer than it was before but that is true for you too. It sucks. It is not fair. It is not fun. I hope that I can continue to annoy you and everyone else for years to come and I am going to finish this alphabet and then some.
K is for Kidney
The War on carcinoid cancer is almost always lost in the liver. Steve Jobs was able to get a liver transplant but it still was not sufficient to win the war. My liver was about 20% involved 2 years ago but I also lost the left lobe so I don't know where we are at now. New liver growth does not come back cancer free so that does not reassure me.
Recurrent bowel obstructions are something I have experienced first hand and, although they get more and more difficult to address for the surgeon, they will not kill me if eventually addressed. Lung and bone metastases are possible but, again, they are slow growing compared to the liver so I considered that a possibility but the liver was still the danger area.
I never considered the kidneys as endangered in any way. The tumors have not been recorded as moving into the kidneys so there was no reason to worry. Even in mid 2012, when the surgeons knew the tumors were wrapped around the ureters, I did not even think about the possibility that it would affect my kidneys. In November 2012, the surgeons said I would need uretal stents forever and, even then, I did not think there was any worry about my kidneys.
I was told they needed to be swapped in 3-4 months and that I could just have that done by a urologist in Colorado Springs so I got together with one in Colorado Springs. The urologist felt that 3-4 months was too soon and we were going to try for 6 months. Well, at 5 months, the stents got plugged and we swapped them. My Creatinine level rose from a normal 1.0 to about 2.2 after the swap which indicated kidney damage but I did not know that. So much for being a partner in my treatment...
The new stents used a material that should be good for 12 months but we decided to swap at 9 months because the previous stents plugged earlier than the doctor expected. Well, at 9 months, we did a urine culture and determined that I had a urinary tract infection and we got on some antibiotics. Unfortunately, we chose an antibiotic that is not recommended for people with significant kidney damage and, again, not taking an active position within my treatment hurt me because my creatinine was now up to 6 and rebounded to 4.
Now I knew that things were bad because the urologist asked me "who is your nephrologist?" and my answer was "What is a nephrologist?". I now knew that I had to be an active participant in managing this situation and I started reading and learning. One of the first things I learned is that creatinine is measured on a logarithmic scale similar to decibels or earthquakes. This means a creatinine of 2 is roughly twice as bad as a normal creatinine of 1. A creatinine of 3 is about twice as bad as a creatinine of 2 and a creatinine of 4 is twice as bad as a creatinine of 3.
Now the exponent base is not exactly 2 because my current creatinine of 4.5ish gives a liver function of about 15-18% rather than the 9% or so that a 4.5 would give with a base of 2. Regardless, it is bad and, when it hits 10% or so, I am going to be forced onto dialysis.
The other thing that the kidneys have done to me is destroy my hemoglobin levels and make me quite anemic. Prior to my the start of 2012, I consistently had hemoglobin levels of 15-16 which is exactly why my lungs would never give out before my heart, legs, or arms. Since the start of 2012, my hemoglobin has been on a fairly linear decent. I hit a hemoglobin level of 12 around my mid 2012 surgery. It dropped to 10 in mid 2013 and it is currently hovering in the 8s, getting as low as 7.7.
What that means is that my body is not able to get nearly as much oxygen from my lungs to my heart and other muscles. We live in Colorado Springs, at about 7000 feet above sea level and the air here has about 80% of the oxygen available at sea level. People then often go skiing and most ski mountains have summits around 11000 feet where the air has about 66% of the oxygen at sea level. Many tourists and locals also go to the top of Pikes Peak either by foot or by car where the oxygen is now at 58% of sea level.
Now, I have had a couple of years to acclimate to my 50% reduction in oxygen carrying capability so it is not quite that extreme as people who fly here from sea level and immediately do these things but I can completely sympathize with them. I am continually fatigued, and my face is paler that normal. I get completely winded walking up two flights of stairs and have to stroll for the quarter mile walk into work or I will have to sit as soon as I reach the building.
I hit my lowest hemoglobin level of 7.7 about a 1.5 months ago and got a blood transfusion of 2 units which helped for a short term. I am getting injections of aranesp every other week to try to kick start my bone marrow. I take 325mg of iron twice a day to give my body plenty of iron to build hemoglobin and we are trying to avoid too many infusions as they carry more risk compared to aranesp injections. Our goal is to get my hemoglobin back up to at least 10 which should help me out quite a bit.
Let my kidney situation serve as a warning to you! Take control of your health. You and your doctor should be working together and you should not just assume (s)he will always do what is best for you. Get second or third opinions. Read and research what is going on. Make sure that you are managing your own life rather than just being a passive passenger.
Recurrent bowel obstructions are something I have experienced first hand and, although they get more and more difficult to address for the surgeon, they will not kill me if eventually addressed. Lung and bone metastases are possible but, again, they are slow growing compared to the liver so I considered that a possibility but the liver was still the danger area.
I never considered the kidneys as endangered in any way. The tumors have not been recorded as moving into the kidneys so there was no reason to worry. Even in mid 2012, when the surgeons knew the tumors were wrapped around the ureters, I did not even think about the possibility that it would affect my kidneys. In November 2012, the surgeons said I would need uretal stents forever and, even then, I did not think there was any worry about my kidneys.
I was told they needed to be swapped in 3-4 months and that I could just have that done by a urologist in Colorado Springs so I got together with one in Colorado Springs. The urologist felt that 3-4 months was too soon and we were going to try for 6 months. Well, at 5 months, the stents got plugged and we swapped them. My Creatinine level rose from a normal 1.0 to about 2.2 after the swap which indicated kidney damage but I did not know that. So much for being a partner in my treatment...
The new stents used a material that should be good for 12 months but we decided to swap at 9 months because the previous stents plugged earlier than the doctor expected. Well, at 9 months, we did a urine culture and determined that I had a urinary tract infection and we got on some antibiotics. Unfortunately, we chose an antibiotic that is not recommended for people with significant kidney damage and, again, not taking an active position within my treatment hurt me because my creatinine was now up to 6 and rebounded to 4.
Now I knew that things were bad because the urologist asked me "who is your nephrologist?" and my answer was "What is a nephrologist?". I now knew that I had to be an active participant in managing this situation and I started reading and learning. One of the first things I learned is that creatinine is measured on a logarithmic scale similar to decibels or earthquakes. This means a creatinine of 2 is roughly twice as bad as a normal creatinine of 1. A creatinine of 3 is about twice as bad as a creatinine of 2 and a creatinine of 4 is twice as bad as a creatinine of 3.
Now the exponent base is not exactly 2 because my current creatinine of 4.5ish gives a liver function of about 15-18% rather than the 9% or so that a 4.5 would give with a base of 2. Regardless, it is bad and, when it hits 10% or so, I am going to be forced onto dialysis.
The other thing that the kidneys have done to me is destroy my hemoglobin levels and make me quite anemic. Prior to my the start of 2012, I consistently had hemoglobin levels of 15-16 which is exactly why my lungs would never give out before my heart, legs, or arms. Since the start of 2012, my hemoglobin has been on a fairly linear decent. I hit a hemoglobin level of 12 around my mid 2012 surgery. It dropped to 10 in mid 2013 and it is currently hovering in the 8s, getting as low as 7.7.
What that means is that my body is not able to get nearly as much oxygen from my lungs to my heart and other muscles. We live in Colorado Springs, at about 7000 feet above sea level and the air here has about 80% of the oxygen available at sea level. People then often go skiing and most ski mountains have summits around 11000 feet where the air has about 66% of the oxygen at sea level. Many tourists and locals also go to the top of Pikes Peak either by foot or by car where the oxygen is now at 58% of sea level.
Now, I have had a couple of years to acclimate to my 50% reduction in oxygen carrying capability so it is not quite that extreme as people who fly here from sea level and immediately do these things but I can completely sympathize with them. I am continually fatigued, and my face is paler that normal. I get completely winded walking up two flights of stairs and have to stroll for the quarter mile walk into work or I will have to sit as soon as I reach the building.
I hit my lowest hemoglobin level of 7.7 about a 1.5 months ago and got a blood transfusion of 2 units which helped for a short term. I am getting injections of aranesp every other week to try to kick start my bone marrow. I take 325mg of iron twice a day to give my body plenty of iron to build hemoglobin and we are trying to avoid too many infusions as they carry more risk compared to aranesp injections. Our goal is to get my hemoglobin back up to at least 10 which should help me out quite a bit.
Let my kidney situation serve as a warning to you! Take control of your health. You and your doctor should be working together and you should not just assume (s)he will always do what is best for you. Get second or third opinions. Read and research what is going on. Make sure that you are managing your own life rather than just being a passive passenger.
Sunday, July 13, 2014
J is for Journey
"Life is a journey, not a guided tour". This is the motto of the Run for Hope that we have done for the past 8 or so years. Jeanne started the Run for Hope as her personal rage at the sky for her diagnosis and her continued struggle against Carcinoid Cancer. We started joining the race either as walkers or as runners back in about 2005 and I have made every one since except for last year, when I was battling the Triple Bypass which occurred on the same day as the race.
As you already know, my journey started in September of 2001 when I knew something was wrong but could not place a finger on it. I had gained about 20 pounds in the previous 6 months and had even started running with some friends at work to try and get rid of the weight. I was having strange stomach pains and was starting to get fatigued and would vomit oddly.
My journey started with the completely unexpected diagnosis of cancer and has forced me to expand my knowledge into areas of medicine that were completely unanticipated. I became an active participant in my treatment (most of the time) and the times I did not, I often paid the price for my negligence.
My journey has taught me things about what I can endure and what I cannot. It has shown me friendship that includes sitting with me in my hospital room and watching an Avalanche game on a tiny, standard definition screen from uncomfortable chairs. I have even seen the friendship that includes bringing me Krispy Kreme donuts for a treat as I recover at the hospital.
I have had the comfort of a simple stroking of my back by my beautiful wife as I sit in the ICU with 8+ different bags hanging, giving me a broad assortment of drugs and nutrition. I have gotten to see my oldest son turn into a man and offer me a kidney, just to keep me around longer and to hear him, at 17 years of age, say "Dad, I love you" for no other reason than love as we are both heading up stairs to go to bed.
My journey has included seeing my kids become absolutely awesome skiers and boarders, leaving me behind on the moguls that I love so much. I have seen my wife turn into the athlete that was hiding inside of her and have been able to see myself cross these three mountain passes on my bike (although next time will be in a car). I have gone on awesome ski trips with friends to many resorts and enjoyed the time both on and off the slopes with them.
I have tried to not sat back and wait for things to happen to me. I have tried (and sometimes failed) to seek out opportunities when they present themselves and urge you to do the same. Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.
As you already know, my journey started in September of 2001 when I knew something was wrong but could not place a finger on it. I had gained about 20 pounds in the previous 6 months and had even started running with some friends at work to try and get rid of the weight. I was having strange stomach pains and was starting to get fatigued and would vomit oddly.
My journey started with the completely unexpected diagnosis of cancer and has forced me to expand my knowledge into areas of medicine that were completely unanticipated. I became an active participant in my treatment (most of the time) and the times I did not, I often paid the price for my negligence.
My journey has taught me things about what I can endure and what I cannot. It has shown me friendship that includes sitting with me in my hospital room and watching an Avalanche game on a tiny, standard definition screen from uncomfortable chairs. I have even seen the friendship that includes bringing me Krispy Kreme donuts for a treat as I recover at the hospital.
I have had the comfort of a simple stroking of my back by my beautiful wife as I sit in the ICU with 8+ different bags hanging, giving me a broad assortment of drugs and nutrition. I have gotten to see my oldest son turn into a man and offer me a kidney, just to keep me around longer and to hear him, at 17 years of age, say "Dad, I love you" for no other reason than love as we are both heading up stairs to go to bed.
My journey has included seeing my kids become absolutely awesome skiers and boarders, leaving me behind on the moguls that I love so much. I have seen my wife turn into the athlete that was hiding inside of her and have been able to see myself cross these three mountain passes on my bike (although next time will be in a car). I have gone on awesome ski trips with friends to many resorts and enjoyed the time both on and off the slopes with them.
I have tried to not sat back and wait for things to happen to me. I have tried (and sometimes failed) to seek out opportunities when they present themselves and urge you to do the same. Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.
Saturday, July 5, 2014
I is for Inspiration
Inspiration has been on my mind lately as to being an inspiration to others and thought I would talk about what inspires me.
For the longest time, one of my biggest inspirations was Lance Armstrong. His story was perfect and gave me so much to aim for in my life. I still draw some inspiration from him but nothing like before he was proven to be a lying, cheating jerk and 'confessed' to his doping. He still did have cancer, his recovery was remarkable and his achievements, even if drug assisted, remain incredible. I have read his book "It's not About the Bike" several times and it still can inspire me.
Lance talked about some of the recovery process during and after the chemo. I specifically remember one section where he talks about finally getting back on the bike and doing some laps around the neighborhood:
If there is another cyclist that inspires me now, it has to be Jens Voigt. Jens is a 42 year old cyclist who rides for Trek in the 2014 Tour de France. Two years ago, Jens won a mountain stage (are there any others?) in the US Pro Cycling Challenge here in Colorado. Jens is always attacking. He is always the man you need to mark because you never know when he will go. Jens' most famous quote is "Shut up Legs" which is his battle cry to keep continuing on. This year, he is the oldest rider in the 2014 tour and took the Polka Dot jersey today (best climber) in the opening stage. Shut up legs indeed.
For the longest time, one of my biggest inspirations was Lance Armstrong. His story was perfect and gave me so much to aim for in my life. I still draw some inspiration from him but nothing like before he was proven to be a lying, cheating jerk and 'confessed' to his doping. He still did have cancer, his recovery was remarkable and his achievements, even if drug assisted, remain incredible. I have read his book "It's not About the Bike" several times and it still can inspire me.
Lance talked about some of the recovery process during and after the chemo. I specifically remember one section where he talks about finally getting back on the bike and doing some laps around the neighborhood:
By the end of my treatment we would ride for half an hour, a simple loop through the neighborhood... about halfway through the ride we reached a short steep hill. I thought I was keeping up, but the truth was, my friends were being kind. In fact, they were moving so slowly they almost fell over sideways on their bikes... I had little concept of how fast or how show we were moving.
All of a sudden, a figure moved up on my left. It was a woman in her 50s on a heavy mountain bike, and she went right by me.
All of a sudden, a figure moved up on my left. It was a woman in her 50s on a heavy mountain bike, and she went right by me.
This section of the book hit me quite hard because I so easily get into a mode of getting judgmental of what others are or are not doing. I don't know where that person has been when I am passing them (or being passed by them as is more common). I don't know what struggles they have seen and need to remember to respect them and where they are at. We all need to remember that when we pass someone on the road, the trail, or just see them struggling to do something we consider trivial. So, even a lying, cheating, mean spirited, self serving jerk of a cyclist can give us lessons in how to live our lives.
If there is another cyclist that inspires me now, it has to be Jens Voigt. Jens is a 42 year old cyclist who rides for Trek in the 2014 Tour de France. Two years ago, Jens won a mountain stage (are there any others?) in the US Pro Cycling Challenge here in Colorado. Jens is always attacking. He is always the man you need to mark because you never know when he will go. Jens' most famous quote is "Shut up Legs" which is his battle cry to keep continuing on. This year, he is the oldest rider in the 2014 tour and took the Polka Dot jersey today (best climber) in the opening stage. Shut up legs indeed.
Wayne Gretzky inspires me. He was the best hockey player ever and famously said that "You miss 100% of the shots you don't take." If you don't try, you have already failed. It doesn't mean to play or live with complete abandon but you must live and play, taking the opportunities that life presents to you. I almost screwed that up this last week by not taking advantage of an opportunity to drive a 427 AC Cobra kit car for reasons I don't want to get into. My wife encouraged me and I did it. It was an awesome experience and my son said that my smile was the biggest he has ever seen on my face.
Mario Lemieux is another hockey player that inspires me. He fought through diseases that would level any ordinary man and, had he actually been healthy throughout his career, may have passed Gretzky to be the Great One. He had herniated disks in his back, non-hodgkins lymphoma, and chronic tendonitis. In spite of this, he was one of the best and attempted two separate comebacks and eventually saved the Pittsburgh Penguins by buying them while playing for them in his second comeback.
My wife inspires me. She has overcome so much and completed the Pikes Peak Ascent (half marathon with 7k+ feet of vertical gain in less than 6hrs and 30 minutes, something I could never do) in the required time. She is not someone that most would look at and consider an athlete but through hard work and determination, she accomplished what she set out to do. She makes me want to improve and get back to something close to where I was. I went for my first ride in forever today and it was awful but Stephanie has had equally horrific rides, runs, and other outings but she keeps going. She makes me want to improve and encourages me to truly be the best I can be.
Brian Einsweiler inspires me. We first met about 12 years ago at the hockey rink when he was placed on our team and, although we did not know it at the time, he had lost a significant amount of weight and had gone from couch potato to athlete. Brian ran the Leadville 100 trail race a few years ago, an event that so few enter and even fewer complete. His transformation is something that makes me want to do better and to work harder. He is also the only person I know who can put away a quadruple bypass and then ask what is for desert but that is another story...
Are there others that inspire me? Of course but I don't want to write forever. If I have not named you or your favorite athlete/historical figure (a few more of my heros are in a previous blog), I apologize but these are the ones I chose today.
Wednesday, July 2, 2014
H is for Hero
I struggled with H as well. I don't use the word hero because I feel it applies to me but because it is a word people have used to describe me and I want to explore that impression.
There are obvious people that are selected for the word hero and they appear immediately in your mind. You think of the police officer that is helping the child find his/her parent. You think of the soldier risking his life for others whether he knows them or not. You think of the firefighter carrying the unconscious grandmother out of a burning house.
There are other less obvious heros that you may be thinking of. You may think of Mahatma Ghandi whose non violent protest finally brought about the equality for all people of South Africa. You may think of Dr. Martin Luther Jr. who was taken way to young as he fought for equal rights for all here in the United States. You may think of Rosa Parks who refused to give up her seat. You may think of Susan B. Anthony who simply felt that the right to vote should be given to all people, not just men.
Several people have used the word hero to describe me and it, frankly, embarrasses and scares me. I look at the people above and they achieve so much at such risk to themselves. I survive and deal with my disease but there is no risk involved. I don't disagree that I try to stand tall in spite of my prognosis and the humiliations that are imposed upon me by my disease but I do these things at no risk to myself.
It scares me for many reasons. The biggest reason is my lack of understanding of why people give me this label. Not knowing the reasons means that I could so easily disappoint others. I worry that my actions or lack of action are going to make people see the true 'me' and see me as a failure. I am scared because I feel people are wrong. I tolerate. I survive. I don't believe that I do anything that is heroic in any way.
Go ahead and call me a hero if you feel it fits but know this; I will disappoint you; I will fail; I will do things that are very non-heroic; I will behave in ways that heros never behave and I will collapse under the weight of all that is happening; I will need others to bear me up and even carry me when things are too difficult. I will try to always stand tall under the experience but I will fail at that as well.
There are obvious people that are selected for the word hero and they appear immediately in your mind. You think of the police officer that is helping the child find his/her parent. You think of the soldier risking his life for others whether he knows them or not. You think of the firefighter carrying the unconscious grandmother out of a burning house.
There are other less obvious heros that you may be thinking of. You may think of Mahatma Ghandi whose non violent protest finally brought about the equality for all people of South Africa. You may think of Dr. Martin Luther Jr. who was taken way to young as he fought for equal rights for all here in the United States. You may think of Rosa Parks who refused to give up her seat. You may think of Susan B. Anthony who simply felt that the right to vote should be given to all people, not just men.
Several people have used the word hero to describe me and it, frankly, embarrasses and scares me. I look at the people above and they achieve so much at such risk to themselves. I survive and deal with my disease but there is no risk involved. I don't disagree that I try to stand tall in spite of my prognosis and the humiliations that are imposed upon me by my disease but I do these things at no risk to myself.
It scares me for many reasons. The biggest reason is my lack of understanding of why people give me this label. Not knowing the reasons means that I could so easily disappoint others. I worry that my actions or lack of action are going to make people see the true 'me' and see me as a failure. I am scared because I feel people are wrong. I tolerate. I survive. I don't believe that I do anything that is heroic in any way.
Go ahead and call me a hero if you feel it fits but know this; I will disappoint you; I will fail; I will do things that are very non-heroic; I will behave in ways that heros never behave and I will collapse under the weight of all that is happening; I will need others to bear me up and even carry me when things are too difficult. I will try to always stand tall under the experience but I will fail at that as well.
Saturday, June 28, 2014
Stephanie's ABC's of cancer, A-G
When Stephanie suggested that I do my own ABCs of cancer, , she started her own list and has now asked me to post them here as well. I have to admit, I fought against using 'A is for Anger' for the longest time because I knew I was going to post these one by one. Steph's words echo so many of my thoughts which is what I guess you would expect of a couple that has been together for 28 years... So, here you go, A-G from Stephanie:
A – Anger – I struggled with this one. I didn’t want to
start this out on such a negative note. I skipped “A” and worked on some other
letters, but I always came back to anger when I thought about “A”. Yes, I know
how futile anger is and I know it is a little self-destructive and very
irrational. But, I admit it -- I get angry and I am ashamed (another “A”) that
sometimes I lash out in my anger. If you have happened to be on the receiving
end of that, I apologize (the “A”s runneth over!). It is not all consuming and it is not always
present, but I have to work at it and be conscious of not letting the anger
take over and the bitterness overwhelm. I have recently told that anger is
caused by fear and hurt. Am I afraid? (another “A”) Hell yes I am afraid. I am
afraid that I am not going to be strong enough, that I am going to fail Ron or
the kids. I am afraid that Ron is going to suffer. I am afraid of living a life
without Ron, he is such a huge part of who I am and how do I go on living without
that? Am I hurt? Hell yeah. Nothing hurts as much as watching Ron go through
this and not being able to make it better. It hurts to watch him hurt. I am
hurt that we have missed a lot of things because we were gone to NOLA. I hurt
when my kids are hurt. I am hurt that our future is being taken away. I AM
afraid and I AM hurt and yes, that does make me angry.
B – Bridges – After Ron’s epic marathon of surgeries in
May/June of 2012, I bombarded Dr. Boudreaux with questions and what ifs. He
very calmly told me that we had to concentrate on today and today’s crisis or
concern and we will cross whatever bridge we have to in the future.
Unfortunately, this was a message he had to repeat to me on several occasions
because I proved to be a slow learner. I am just now starting to learn the
concept. During that time of epic surgeries and recoveries, I would never have
imagined that we would be concerned with end-stage kidney failure. There are so
many things that could happen, I CAN’T worry about them all and as much as I
would LIKE to plan for all contingencies, I can’t. So I am learning to cross
the bridges as they present themselves to me and to Ron.
C – CANCER – this is the big one. The obvious one. The
crushing one. It is the pink elephant that is always in the room. Hell, it is
the entire zoo in the room. Cancer is ALWAYS there; like another member of our
family. The obnoxious, overbearing, all-consuming cousin that comes and won’t
leave and disrupts your entire life and family.
I have tried my hardest to give our family some normality (which isn’t
easy in our family!). I know how Ron tries to be the normal guy and not “Cancer
Man” (that’s our creation that he and I joke about – how we cope with people
giving him the look and/or how I get the “so how is Ron?” question – both
always accompanied with the little head tilt and the look of pity in the eyes).
I am proud to say that I could count on one hand the number of times we have
had to play the “cancer card” (probably all by me). That is not to say I have not
been tempted or that I may not in the future – but for right now --- normality
is the goal for daily life.
D – Dignity -- this is representative of my upmost respect
for Ron. He struggles with maintaining even the smallest amount of dignity. If
we women who have gone through childbirth thought the whole process wiped away
our dignity, we can’t even hold the candle to what Ron has had to endure. I
know Ron and I know how he feels. I often witness his own perceived humiliation
– now understand I don’t agree with those feelings or the stuff that concerns
him, none of it fazes me or most of the people around us – but that isn’t what
is important. It is what Ron thinks. Now knowing how personal a lot of his
issues are; he still speaks very openly with us all. I joke about his blogs or
comments being clinical or analytical --- but a lot of what he shares is very
personal and yet he doesn’t shy away from any of it. Kudos to you Ron for
showing us how to fight cancer and how you share with your support team with such
great dignity and honor. Some of the
other “D” words that came to mind were demolishing, demoralizing and dread. I
dread that moment when I get the phrase “there is nothing else we can do” and
then the subsequent phone calls I am going to have to make. I think demolishing
and demoralizing speak for themselves.
E – Energy – Ron and I both seem to suffer with a major lack
of energy or focus. Ron’s has a lot to do with physical issues. Mine, not so
sure. Some days I will be lucky to get anything accomplished. Thank goodness
for lists, without them I wouldn’t nothing would be getting done.
F – Family – what can I say about this. This topic has
caught me off guard and has caused me to become very emotional. (oh don’t worry
– I am sure that it is going to happen several more times during the
development of this list) I imagine you all know how important our kids are to
us. It destroys Ron, probably more than anything in this process, that his
cancer causes such chaos and will ultimately cause our children such pain. I am
so grateful that my kids have had the opportunity to know Ron. I wasn’t so sure
when he first got diagnosed – Riley was 4, River 3 and Forrest was 6 months
old, that they were going to get that chance. I could not do this without the
three of them; but, I worry about them so.
G – Gratitude – this is so huge. I can’t comprehend how long
so many people have been on this journey with us and how many people have
helped us along the way. We are so fortunate to have such great support. Little
things, big things. There is soooo much.
Thank you. Thank you all. That phrase doesn’t seem to hold enough meaning for
gratitude felt. I wish I could show how much I feel – I can only keep saying
“thank you”. Thank you.
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