Saturday night was our company's end-of-year dinner. It was held at Fogo de Chão, an all-you-can-eat Brazilian steak restaurant. Basically, you can help yourself to this wonderful gourmet salad bar and then all evening, servers come by with skewers of various types and cuts of meats; mostly beef, but some pork, chicken and lamb. With so many varieties, it was a terrible shame to not try most everything that was offered. I went very light on the salad bar so I could stock up on the meat, and I wasn't disappointed. It was wonderfully delicious and the company perfect.
I stuffed myself silly and was very glad I did, until I tried to go to sleep that night. I fell asleep around 1:00am and about 3 hours later I awoke and was unable to go back to sleep for several hours. Several times I considered slipping out of bed and booting up the computer to write in this blog, but I just couldn't do that. It would have completely woken me and, maybe subconsciously, I would have allowed the side effects more control over me than I wanted. I was never in any pain, and there was no sign of acid reflux, but I did feel like I had a bowling ball for a stomach. No position was just right to sleep again. Eventually, the fatigue overcame the discomfort and I fell back asleep.
It's Monday today and, slight headache from a possible cold that might be coming on aside, I feel perfectly fine. It's almost as if the whole thing is a bad nightmare, from which I have slowly awoke. That is, if it wasn't the threat of chemo fun looming on the horizon again next week, I might be able to forget the whole thing. My wife has often said the same. Clothed, you can't see the scars from the surgery or the port implant. I haven't lost any hair (yet) and my weight's the same. Looking at me, well even being me, it does feel like the whole thing was a nightmare and life could resume normally from here. Frankly, I am glad. Despite the enormous blessing it is to feel great physically, it is also wonderful to have some emotional distance. May it continue.
Monday, December 16, 2013
Thursday, December 12, 2013
And the MRI doughnut of fortune says...
We met with the physician's assistant today. The blood tests came back fine, except that my creatinine levels are higher than they would like to see which means my kidneys are struggling. The elevated levels are being caused by the chemo drug Cisplatin. So it looks like I get to start chugging several of liters of water a day to try and help 'em out. Frankly, it's nice to have something I can actively do to help the cause. The most I've been able to do so far is to react in the short term to side effects. Things like: acid reflux coming, down the peppermint tea; hiccups in sight sir, man the yoga breathing; digits have gone numb, don't panic!
The PA also told us the baseline post-surgery tumor protein marker levels. AFP shot up from about 187 pre-surgery to almost 2,400 and LDH was around 330 (we don't have a pre-surgery level for that one). We were both surprised at the huge jump, but the PA didn't seem concerned in the slightest. Putting on my "let's play oncologist" hat, I went back to the office and reviewed the materials I had been given and determined that, according to the master flowchart, I should be changing my chemo routine from four rounds of EP to four rounds of BEP. I called the PA back to discuss the issue, but again, she was unflappable and thinks we should hold to the present course.
The best news though, by far, we received was from the MRI results. There was no indication that the cancer has spread to the brain. Downside was they couldn't find a brain, but that was another matter. When the PA delivered the news, I could have kissed her. I told her as much in front of my wife! I don't think she really appreciated how thrilled we were for the results. It is comforting to think we know the extent of the territory the enemy has taken so we know from whence we need to beat it back. For me, it's like Christmas come early.
End result, I plan on drinking my weight in water and getting ready for round 2 of chemo-extravaganza the week of Christmas!
The PA also told us the baseline post-surgery tumor protein marker levels. AFP shot up from about 187 pre-surgery to almost 2,400 and LDH was around 330 (we don't have a pre-surgery level for that one). We were both surprised at the huge jump, but the PA didn't seem concerned in the slightest. Putting on my "let's play oncologist" hat, I went back to the office and reviewed the materials I had been given and determined that, according to the master flowchart, I should be changing my chemo routine from four rounds of EP to four rounds of BEP. I called the PA back to discuss the issue, but again, she was unflappable and thinks we should hold to the present course.
The best news though, by far, we received was from the MRI results. There was no indication that the cancer has spread to the brain. Downside was they couldn't find a brain, but that was another matter. When the PA delivered the news, I could have kissed her. I told her as much in front of my wife! I don't think she really appreciated how thrilled we were for the results. It is comforting to think we know the extent of the territory the enemy has taken so we know from whence we need to beat it back. For me, it's like Christmas come early.
End result, I plan on drinking my weight in water and getting ready for round 2 of chemo-extravaganza the week of Christmas!
Wednesday, December 11, 2013
What a long, strange journey the past two months have been
Come on everyone, sing together, "Let's start at the very beginning..."
So it began innocently enough, I suppose. I had taken the dog for her evening walk on the first Sunday in October. About two hours later, I was innocently sitting at the table doing something on the computer, when suddenly I felt like I had been tapped in the groin. Not a full out kick or anything, just a tap. You men out there know what I am talking about. Most of the pain was in the abdomen and back. I readjusted things, but the pain didn't go away. It wasn't severe pain, by any stretch of the imagination, and a single ibuprofen knocked it out flat. It lasted for about 3 or 4 days and then disappeared. I happily went on with life as usual.
Then three weeks later I noticed that my right testicle had gone hard as a rock. It was a sudden change. No lump or anything, but the whole thing felt hard and numb. Well, I wasn't going to wait on this. I saw the doctor the next day, who I think initially thought I was exaggerating. Once he felt it, his conclusion was that it was bad, not likely very bad, but bad. He drew blood and I had an appointment with the urologist before I left the doctor's parking lot.
The morning of Halloween, I spoke with the doctor. Everything looked great, with one big caveat: my blood tumor level was high. His recommendation was to make sure I kept the appointment with the urologist. (Trust me buddy, wild horses couldn't keep me away!) So, Tuesday November 5th, I met with the urologist and after feeling around the jewel box, he declared straightforwardly, it was a tumor and it had to go!
Now here's where the value of the internet comes into play. No one had mentioned the word cancer yet and wouldn't utter it for weeks to come. But, I went online and discovered that the tumor markers found in my blood revealed that testicular cancer was the most likely diagnosis and that step one was a "radical orchiectomy". In everyday parlance, they would slice out the offending ball. I was grateful for a few days in which to process this news, otherwise I can only imagine what my shock and horror would have been at his announcement. He said I was lucky as he had a cancellation for that Friday morning (you know how truly bad things are when this qualifies as luck!) Frankly, and I know this isn't rational, but what I found most disturbing was that no prosthetic was going to be placed in. It's silly I know. In the past week or two alone the thing had grown significantly and I was used to packing a fairly heaver punch down there. I was hoping that he could pop in something similar, you know, or maybe even bigger. I don't think he found my suggestion humorous in the least.
By Thursday night, truth be told, I was more than ready. It wasn't like I had a bike riding accident and I had injured myself and I was sad that a part of me had to come out. Quite the opposite. I had come to calling the thing dangling between my legs "the alien", because that was what it was like. It wasn't me anymore. It was this invading mass that was now really enlarged and sending out feelers as if it wasn't ashamed of the fact that its intent was to take over my whole body. Really, honest-to-goodness testicle tentacles. I have the pictures to prove it too.
Friday morning found me at the hospital well before sunrise and in the sub-basement getting prepped for surgery. What I found most amusing is that everyone with whom I came in contact, from the admitting nurse, to orderlies, to the radiologist, to the pre-surgeon nurse, wanted me to describe in my own words what I was having done. I don't think they were personally interested, mind you, just hospital procedure to make sure they are removing a testicle as opposed to a heart transplant. I tried several variants from the straight forward, "I am having my right testicle removed", to the humorous, "invading life form is being carved out from my right ballsack (ok, I didn't really use that one) to the more esoteric, "I am undergoing a radical inguinal right orchiectomy". The later quickly became the phrase of choice as it was vague enough and safely couched in medical terms to leave dozens of inquirers satisfied. I also offered the male medical personnel I encountered a chance to see the alien for themselves. All politely declined, however, the pre-op nurse in surgery earns props for the best response, "Don't worry in 30 minutes there will be plenty of people staring at it from inside and out."
Frankly, the rest of Friday was pretty miserable. My wife and mom got me home and I felt every bump in the road in my 20-year old jalopy (just kidding car, you might make it longer than me!). I remember I couldn't stand up straight as I walked upstairs to crash on my bed. As a general rule, I despise pain killers. I can't stand feeling dopey and sleepy and I don't like how they mess with my uh-hem, bowel movements, but they were my best friends that day. Saturday was tough, but much better. Sunday morning I swore off the pain killers and could move around pretty easily and do most everything but sit up straight in a chair. Monday was Veteran's Day and Tuesday I worked a half day and was mostly in full swing again by week's end.
About 11 days after the surgery, I headed back to the hospital for my CT scan. It was surreal being back at the place; that place where barely over a week ago, I had to be wheeled out in a wheelchair. The CT scan was a cake walk. I was expecting the liter of "juice" they make you drink to be vile, but it really wasn't bad. A full two weeks after the surgery we met with the urologist again. He was thrilled with how well the procedure had gone, but had disappointing news for us. The CT scan showed that the tumor (not he, nor had anyone else, had yet uttered the word "cancer") had spread. There were two 5cm masses on my lymph nodes and two 2cm masses in each lung. I asked him if it had spread to the brain and he said they hadn't checked that because I hadn't complained of any symptoms there. I politely refined from retorting that I hadn't complained of any symptoms in my chest, but they looked there. I don't think he would have appreciated the logic. He was however, as reassuring as he could be and informed us that despite sounding dire, the prognosis was excellent and he "would be very disappointed if this wasn't completely cured." "You'd be disappointed!", I replied. I just couldn't leave that one hanging.
The next week being Thanksgiving, I wanted to get in to oncology as soon as possible. I just couldn't see any good in waiting. My wife, bless her heart, didn't accept the urologist's staff's suggestion to call oncology if we hadn't heard back within a week. She was on the phone that afternoon and had managed to squeeze us in an appointment by Tuesday. We met with the doctor who took a full hour with us and was truly wonderful. He discussed the results of the biopsy and CT scan and described why this was Stage 3 testicular cancer (finally someone using the "c" word). He explained that I had two 5cm large masses on each of my lymph nodes and two 2cm masses in each lung. Because it had spread past my lymph nodes, I automatically fell into Stage 3. On the other hand, I fell in the "good risk" group as my tumor levels, while elevated, were still low and that, as far as they could tell, it hadn't spread to the brain, blood or liver. What surprised me most was that I was given the option of choosing between two chemo regimes. Three rounds of BEP or four rounds of EP. Statistically, the effectiveness of both regime for a "good" grouping like me is the same. By opting for EP, you avoid the side effects of the "B" drug (Bleomycin) and the potential damaging side effects. On the other hand though, you have another round of chemo which means three additional weeks of being sick. He said the decision was completely up to me, but said he personally would lean towards the EP. One round of chemo is 5 days straight, 5-6 hours a day, with two weeks off in between. Simple math I know, but this means 20 full days of chemo stretched out over 12 weeks. We left with plans to begin chemo the next Monday.
Monday started with me back in the hospital waiting to have a port installed in my chest. I have to admit, I was a little nervous because they weren't going to put me out and instead give me a drug that would put me in some kind of "la la land". The whole thing went amazingly smooth and has been a godsend so far. Someone wheeled me over to the chemo zone and I received hydration, followed by two kinds of anti-nausea, steroids and finally the two chemo drugs. The whole thing took about 5 hours the first day. Tuesday was much the same, but that night I developed a case of hiccups that lasted about 4 hours. It sounds funny, but wasn't. I tried peppermint and chamomile tea and finally got them to stop by taking very deep breaths, yoga style. Anytime I have felt them coming back, I have stopped them by immediately stopping whatever I was doing and starting deep breathing. Other side effects have been acid reflex, very mild nausea, a weird ringing in my ears when I lie down and if I don't keep my head straight, and losing feeling in two fingers for about 15 minutes. Not all the side effects are negative though. Starting the second day or so, I developed a crazy appetite for protein and salty things. The nurses have assured me this is from the steroids and to enjoy it while it lasts! I feel a bit like a teenager again. Sunday night, I had three helpings of pork roast, gravy and potatoes. It is starting to fade a bit, but food still sounds wonderful. Sweets on the other hand, and those of you who know me well we realized how odd this is for me, don't sound appetizing at all. They still taste good, but they don't sound good. All in all though, round one was pretty easy.
Today, I went in for my MRI to make sure that nothing has spread to the brain. I can see why people don't like to get an MRI, but I thought it was a fascinating experience. It is certainly a tight tube. The technician gave me ear plugs then put a fence up on either side of my head and stuffed blankets on either side of my face to keep my head still. Then she pulled a "helmet" over my head that was just a few inches from my face. Thankfully, I knew that claustrophobia was a distinct possibility and was meditating my way to my happy place. I had heard that MRIs can be loud and that was certainly no understatement. I decided that the whole thing had to have been invented by and for teenage boys who love loud noises. Each set of images came with its own distinct set of noises. The best comparison I can make is they ranged in style from galloping horses, to jackhammers, to the emergency broadcast system. Tomorrow we get the results and meet with the physician's assistant to discuss progress so far.
So it began innocently enough, I suppose. I had taken the dog for her evening walk on the first Sunday in October. About two hours later, I was innocently sitting at the table doing something on the computer, when suddenly I felt like I had been tapped in the groin. Not a full out kick or anything, just a tap. You men out there know what I am talking about. Most of the pain was in the abdomen and back. I readjusted things, but the pain didn't go away. It wasn't severe pain, by any stretch of the imagination, and a single ibuprofen knocked it out flat. It lasted for about 3 or 4 days and then disappeared. I happily went on with life as usual.
Then three weeks later I noticed that my right testicle had gone hard as a rock. It was a sudden change. No lump or anything, but the whole thing felt hard and numb. Well, I wasn't going to wait on this. I saw the doctor the next day, who I think initially thought I was exaggerating. Once he felt it, his conclusion was that it was bad, not likely very bad, but bad. He drew blood and I had an appointment with the urologist before I left the doctor's parking lot.
The morning of Halloween, I spoke with the doctor. Everything looked great, with one big caveat: my blood tumor level was high. His recommendation was to make sure I kept the appointment with the urologist. (Trust me buddy, wild horses couldn't keep me away!) So, Tuesday November 5th, I met with the urologist and after feeling around the jewel box, he declared straightforwardly, it was a tumor and it had to go!
Now here's where the value of the internet comes into play. No one had mentioned the word cancer yet and wouldn't utter it for weeks to come. But, I went online and discovered that the tumor markers found in my blood revealed that testicular cancer was the most likely diagnosis and that step one was a "radical orchiectomy". In everyday parlance, they would slice out the offending ball. I was grateful for a few days in which to process this news, otherwise I can only imagine what my shock and horror would have been at his announcement. He said I was lucky as he had a cancellation for that Friday morning (you know how truly bad things are when this qualifies as luck!) Frankly, and I know this isn't rational, but what I found most disturbing was that no prosthetic was going to be placed in. It's silly I know. In the past week or two alone the thing had grown significantly and I was used to packing a fairly heaver punch down there. I was hoping that he could pop in something similar, you know, or maybe even bigger. I don't think he found my suggestion humorous in the least.
By Thursday night, truth be told, I was more than ready. It wasn't like I had a bike riding accident and I had injured myself and I was sad that a part of me had to come out. Quite the opposite. I had come to calling the thing dangling between my legs "the alien", because that was what it was like. It wasn't me anymore. It was this invading mass that was now really enlarged and sending out feelers as if it wasn't ashamed of the fact that its intent was to take over my whole body. Really, honest-to-goodness testicle tentacles. I have the pictures to prove it too.
Friday morning found me at the hospital well before sunrise and in the sub-basement getting prepped for surgery. What I found most amusing is that everyone with whom I came in contact, from the admitting nurse, to orderlies, to the radiologist, to the pre-surgeon nurse, wanted me to describe in my own words what I was having done. I don't think they were personally interested, mind you, just hospital procedure to make sure they are removing a testicle as opposed to a heart transplant. I tried several variants from the straight forward, "I am having my right testicle removed", to the humorous, "invading life form is being carved out from my right ballsack (ok, I didn't really use that one) to the more esoteric, "I am undergoing a radical inguinal right orchiectomy". The later quickly became the phrase of choice as it was vague enough and safely couched in medical terms to leave dozens of inquirers satisfied. I also offered the male medical personnel I encountered a chance to see the alien for themselves. All politely declined, however, the pre-op nurse in surgery earns props for the best response, "Don't worry in 30 minutes there will be plenty of people staring at it from inside and out."
Frankly, the rest of Friday was pretty miserable. My wife and mom got me home and I felt every bump in the road in my 20-year old jalopy (just kidding car, you might make it longer than me!). I remember I couldn't stand up straight as I walked upstairs to crash on my bed. As a general rule, I despise pain killers. I can't stand feeling dopey and sleepy and I don't like how they mess with my uh-hem, bowel movements, but they were my best friends that day. Saturday was tough, but much better. Sunday morning I swore off the pain killers and could move around pretty easily and do most everything but sit up straight in a chair. Monday was Veteran's Day and Tuesday I worked a half day and was mostly in full swing again by week's end.
About 11 days after the surgery, I headed back to the hospital for my CT scan. It was surreal being back at the place; that place where barely over a week ago, I had to be wheeled out in a wheelchair. The CT scan was a cake walk. I was expecting the liter of "juice" they make you drink to be vile, but it really wasn't bad. A full two weeks after the surgery we met with the urologist again. He was thrilled with how well the procedure had gone, but had disappointing news for us. The CT scan showed that the tumor (not he, nor had anyone else, had yet uttered the word "cancer") had spread. There were two 5cm masses on my lymph nodes and two 2cm masses in each lung. I asked him if it had spread to the brain and he said they hadn't checked that because I hadn't complained of any symptoms there. I politely refined from retorting that I hadn't complained of any symptoms in my chest, but they looked there. I don't think he would have appreciated the logic. He was however, as reassuring as he could be and informed us that despite sounding dire, the prognosis was excellent and he "would be very disappointed if this wasn't completely cured." "You'd be disappointed!", I replied. I just couldn't leave that one hanging.
The next week being Thanksgiving, I wanted to get in to oncology as soon as possible. I just couldn't see any good in waiting. My wife, bless her heart, didn't accept the urologist's staff's suggestion to call oncology if we hadn't heard back within a week. She was on the phone that afternoon and had managed to squeeze us in an appointment by Tuesday. We met with the doctor who took a full hour with us and was truly wonderful. He discussed the results of the biopsy and CT scan and described why this was Stage 3 testicular cancer (finally someone using the "c" word). He explained that I had two 5cm large masses on each of my lymph nodes and two 2cm masses in each lung. Because it had spread past my lymph nodes, I automatically fell into Stage 3. On the other hand, I fell in the "good risk" group as my tumor levels, while elevated, were still low and that, as far as they could tell, it hadn't spread to the brain, blood or liver. What surprised me most was that I was given the option of choosing between two chemo regimes. Three rounds of BEP or four rounds of EP. Statistically, the effectiveness of both regime for a "good" grouping like me is the same. By opting for EP, you avoid the side effects of the "B" drug (Bleomycin) and the potential damaging side effects. On the other hand though, you have another round of chemo which means three additional weeks of being sick. He said the decision was completely up to me, but said he personally would lean towards the EP. One round of chemo is 5 days straight, 5-6 hours a day, with two weeks off in between. Simple math I know, but this means 20 full days of chemo stretched out over 12 weeks. We left with plans to begin chemo the next Monday.
Monday started with me back in the hospital waiting to have a port installed in my chest. I have to admit, I was a little nervous because they weren't going to put me out and instead give me a drug that would put me in some kind of "la la land". The whole thing went amazingly smooth and has been a godsend so far. Someone wheeled me over to the chemo zone and I received hydration, followed by two kinds of anti-nausea, steroids and finally the two chemo drugs. The whole thing took about 5 hours the first day. Tuesday was much the same, but that night I developed a case of hiccups that lasted about 4 hours. It sounds funny, but wasn't. I tried peppermint and chamomile tea and finally got them to stop by taking very deep breaths, yoga style. Anytime I have felt them coming back, I have stopped them by immediately stopping whatever I was doing and starting deep breathing. Other side effects have been acid reflex, very mild nausea, a weird ringing in my ears when I lie down and if I don't keep my head straight, and losing feeling in two fingers for about 15 minutes. Not all the side effects are negative though. Starting the second day or so, I developed a crazy appetite for protein and salty things. The nurses have assured me this is from the steroids and to enjoy it while it lasts! I feel a bit like a teenager again. Sunday night, I had three helpings of pork roast, gravy and potatoes. It is starting to fade a bit, but food still sounds wonderful. Sweets on the other hand, and those of you who know me well we realized how odd this is for me, don't sound appetizing at all. They still taste good, but they don't sound good. All in all though, round one was pretty easy.
Today, I went in for my MRI to make sure that nothing has spread to the brain. I can see why people don't like to get an MRI, but I thought it was a fascinating experience. It is certainly a tight tube. The technician gave me ear plugs then put a fence up on either side of my head and stuffed blankets on either side of my face to keep my head still. Then she pulled a "helmet" over my head that was just a few inches from my face. Thankfully, I knew that claustrophobia was a distinct possibility and was meditating my way to my happy place. I had heard that MRIs can be loud and that was certainly no understatement. I decided that the whole thing had to have been invented by and for teenage boys who love loud noises. Each set of images came with its own distinct set of noises. The best comparison I can make is they ranged in style from galloping horses, to jackhammers, to the emergency broadcast system. Tomorrow we get the results and meet with the physician's assistant to discuss progress so far.
Subscribe to:
Posts (Atom)