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.
Monday, October 20, 2014
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.
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