It was hot. I don’t know what else I should have expected stepping out of the airport into the night air of Phoenix, Arizona. It is a desert after all. But still, it was hot, and surprisingly so for being almost 10 o’clock at night. I hailed my shuttle at the curbside service and gladly stepped into the Air Conditioned climate of the van. This is what I am always told about the desert. When I bring up my displeasure of the sweltering temperatures I am swarmed with comments of “But everything has Air Conditioning.” or “But it is a dry heat.” I have never quite understood the dry heat comment - hot is hot. And as for everything being Air Conditioned, does that mean you live your entire daily existence running from one indoor building to another? Just to escape the outdoors. I don’t like that idea. Anyway, I will step off my soap box for now and stop complaining about the weather in Arizona. I have other important matters at hand after all. I had not flown all the way down to Phoenix to discuss the pros and cons of desert living. I was there on a mission. I was there to find answers from some of the best doctors in the world as to what has been ailing me for the last year.
After settling into my spacious hotel room at the Courtyard Marriott for the night, I woke up early the next morning and headed down to the hotel lobby. There was a shuttle provided by the hotel to take any patients staying there to the Mayo Clinic. I asked the receptionist behind the counter for a ride and was escorted to an awaiting van outside the front door. I climbed into my seat, put on my headphones and began reading my book as I waited to arrive at the clinic. Since I came to the hotel after dark the night before, I never fully grasped the lay of the land. So I hadn’t noticed the big cluster of buildings about 100 yards away from the hotel. It just so happens that these big clusters of buildings were the Mayo Clinic. So after a shuttle ride of approximately 30 seconds, I was delivered to the doorsteps of the clinic. I got out of the van and looked back up the road the way I had come. There was the hotel, in plain view. I thanked the driver and said “I think I’ll walk back. Thank you.“ I entered the front doors and made my way up to the third floor which consisted of the Oncology and Neurology Department. I checked in and was received by a nurse who took my height, weight, and blood pressure before dropping me off into an office down one of many hallways. After a brief wait, a super cool and super confident oncologist by the name of Dr. John Camoriano knocked on the door and let himself in. We made our introductions and then got down to business. He asked me to tell him what was going on with me and why I was at the Mayo Clinic. Well, I let him have it. I told him my life story of the past year. My urinating difficulties, swallowing difficulties, developing a freak case of Bell’s palsy, gaze palsy, breathing problems, and all the other symptoms as little as they might seem. After 15-20 minutes of my rambling and a few interjections of pertinent questions asked by the cool doctor, I finally slowed my pace down enough which cued Dr. Camoriano that it was now his turn. He reviewed the notes he was taking the whole time I was talking and said “This anti-acetyl choline neurological disorder…hmmm…Hold on a second. “ He picked up his phone, dialed a number, and waited for an answer on the other end. “Hello? Linda? This is Dr. John Camoriano at the Scottsdale Mayo Clinic.” Linda? Who is this Linda? Dr. Camoriano went on to tell Linda that he had a patient displaying the Anti-acetyl choline disorder and other puzzling symptoms. They exchanged some medical terms and some pleasantries and as quick as he was on the phone, he was off again. After hanging up, he turned to me and said “That was Linda Vasser. She discovered your neurological disorder 14 years ago and wrote the preeminent paper on the topic. I thought it would be wise to get her in the loop.” Shut up! You have to be fricking kidding me. I can’t believe it. So this is what makes the Mayo Clinic so unbelievable. Experts of all fields are just a phone call away from one another. I was stunned. And anxiously eager to see what was next for me.
Dr. Camoriano had reviewed my previous PET Scan and decided that I needed a new one. He ordered the scan to be done, as well as, a few other blood tests to be carried out. He told me to head down to the scheduling department where I would receive a new itinerary with these tests scheduled over the next couple of days and laid out plans to meet up again on Thursday to discuss the results. He was going to do some research and digging on his end and hopefully my results from these new tests will help him paint a picture of what was going on and have an answer for me on Thursday. That was his hope. Mine too. So I thanked him for his time and went back to the lobby to receive my new itinerary. Five minutes later, my week’s activities were taking shape.
My next appointment that morning was with a Neurologist named Dr. Bosch…I don’t recall his first name. He wasn’t as flashy as Dr. John Camoriano, but looked like he knew his business nonetheless. He had a thick accent that I couldn’t place and had the appearance of the old man from the Pixar movie, Toy Story 2. You know, the old man who fixed Woody‘s arm and cleaned him up. The same old man that was in the Pixar short film, Geri’s game, where he plays chess against himself in the park. If you have no idea who I am talking about, you probably don’t have kids. But you should see both of these films nonetheless. They are classic. Anyway, this is who my Dr. Bosch reminded me of - the old man from these films - or at least a slightly younger brother of his.
The good doctor put me through the regular gamut of neurological tests - all of which I had become a pro at performing. Close my eyes and touch my nose. Walk in a straight line on my heels - now walk back again on my tippy toes. Push against his arms - now pull them towards me. All of these tests that help him get a better idea of my neurological state, but all of which make me feel like a dog in training learning to shake paws or heel. There were some standard questions thrown in. All of which I had heard before and all of which I quickly gave my rote answers. He seemed to understand less and less as to what my problem could be as the meeting prattled on. He seemed perplexed and for this reason alone, I believe he ordered an insane amount of tests for me to perform throughout the week. I had no idea what some of these tests were for, but I feel he was taking a shotgun approach at finding solutions and hoping that one of these tests might provide answers or insight. He then told me to put on my clothes and head out to the lobby to pick up my newly revised itinerary. He told me he would meet with me again on Friday. Unfortunately, we never met again. Little did he know that I would be in the hospital on Friday having surgery. Little did I know for that matter.
I made my way to the lobby and picked up my newly revised itinerary. I saw that my once free week had now been crowded with appointments which would keep me busy for the duration of my stay at the Mayo Clinic. Each day found me making the familiar walk to the clinic and back. Each day I met with a new set of doctors, nurses, or technicians; each performing a test that they were specialized at performing. On one of these days, I had a test known as an Electromyography (EMG) performed. I had familiarized myself with this test before having it done hoping to know what to expect. It said online that some people may find this test a bit uncomfortable. I found it entirely uncomfortable. Electrodes were attached up and down my leg and foot while electrical currents were shot into the muscles causing an involuntary and painful jerk. It felt as if a series of jumper cables were attached to my skin and the doctors were trying to jump start my lower body - awkwardly twitching and kicking as I lost control of my legs and feet. After several rounds of this testing, the doctor excused herself to review the results. Several minutes later she came back and produced the needles she would use to reach the deeper skeletal muscles of my legs. Instead of hooking me up on the surface of my skin, she plunged the needles into my legs and searched for the right nerve. Even before the needles were given their electrical surge, I could feel a painful throb as the needles probed deeper into my leg. Once the needle was in the right place, they would turn up the juice and a pain I can’t even describe took over my body. Instinctively I reached down to pull the needles out, stopping myself just before doing so. Now as painful as this was, it was nothing compared to when they examined my foot. I don’t have much fleshy mass on the top of my foot, so one would think any nerve would be easy to find. But the doctor inserted the needle into the top of my foot and moved it side to side under my skin, exploring and searching for just the right nerve. After what seemed like hours, but was surely just seconds, she found the right nerve and revved up the juice and let it flow. YOWZA! That hurt. And this time I did not restrain myself and let her know that it was painful, extremely so. I think she got the message as she said she was done and didn’t need to pursue this form of testing any longer. She said that she couldn’t see any nerve weaknesses and everything looked fine. I have no idea what they would find if my nerves were deficient, but I am assuming if my nerves were bad or unresponsive I wouldn’t have jerked or felt anything. But I jerked. And I felt it. I gratefully put on my clothes, said thank you, and left as fast as I could - hoping that was the worst test of the week.
Luckily, the remainder of the tests were easy and mostly pain free. I had another barium swallow test and a weird test that assessed my skin’s ability to sweat. Some seemed reasonable and some seemed nonsensical, but they all seemed to have a purpose, and that was to find out what was wrong with me. After having my PET Scan, I met with Dr. John Camoriano on Thursday. He entered the office with the cool swagger that I had grown accustomed. He fired up his computer and began showing me the slides from my PET Scan. I had seen the slides from my previous PET Scan I had done in Bellingham, and compared to these new ones, they looked like ink blot tests. Whereas before I think I saw the slightest hint of a tumor, these images glowed on the screen. There was no doubt what was and what wasn’t a tumor. The lymph nodes under my clavicle, behind my heart and kidney, and below my gut lit up the screen. These images were also able to tell us which of my tumors were the biggest and nastiest. Dr. John Camoriano said the tumor found in my gut was the baddest of the bunch and recommended that I have surgery immediately to remove this tumor and have it examined. He asked me when I was planning to fly home. I told him Saturday. He asked if I could delay my flight as he would like to admit me to the Mayo hospital the next morning for surgery. I was kind of shocked. I was looking forward to heading home in two days. Now it looked like I would be staying an extra week. But I was here to find answers and it seemed that this surgery would be able to provide them, so I took it all in stride and left his office and headed to the Mayo Hospital for a pre-op consultation. I met with Dr. Madura later that afternoon and he told me that he believed he could get to the tumor with laparoscopic surgery. After discussing the surgery and agreeing that I would need to stay in the hospital overnight, I headed back to my hotel room to get one last night of peaceful sleep.
The next morning I made my way back to the hospital. I checked myself in and waited in the lobby before being wheeled back to the surgery prep room. I signed all the papers releasing liability and received information on a living will. I really need to do one of those. A nurse hooked me up to an IV and I was placed on a gurney. They pushed me into a room with what appeared to be a dozen doctors, hooked me up to an oxygen mask, and began pumping my body with anesthetics. And then I was out. Dead to the world. The next thing I remember, I was waking up in a hospital bed in a post-op section of the hospital. I overheard a nurse tell a doctor that I was coming around and looked to be doing just fine. My throat hurt and there was tenderness throughout my gut. I was in a daze and didn’t fully come around until long after being wheeled into my hospital room. It was then that I noticed I had a catheter in place and thought to myself that this was the reason I was having surgery - so as to not have to use these anymore. But as I wasn’t in any shape to get up and out of the bed to use the restroom, I accepted this catheter reluctantly. Luckily, I had a TV in the room and I turned it on and completely zoned out, counting down the hours that I could leave the hospital and make it back to my hotel room. The hospital wasn’t all bad, I just didn’t feel comfortable there and wanted more then anything to lay in bed in my hotel room - in my brief stay it had become my second home after all. Over the next several hours and into the night, I was checked on by the nursing staff quite regularly. If they wanted me to get a peaceful night’s sleep, they failed miserably as I was being poked and prodded every hour or two. I was being woken up to take my blood pressure or give me a shot of blood thinner or whatever it is they felt was more important than my sleep. It was a miserable night and I couldn’t wait to get out of there. The next morning I did everything I could to make myself look fully recovered. I stood up out of bed and walked around my room dragging my IV behind. I asked to have the catheter removed and breathed a sigh of relief as it was pulled out later that morning. I was beginning to feel somewhat normal as the hangover from the drugs began to subside. I asked the nurse when she thought I could leave. She said as soon as the doctors made their rounds and gave me the okay I could leave. So I waited. And waited. And waited. Finally around 3:00 that afternoon, the doctors gave me their okay to leave. By then, I was more than ready. I had already packed my bag and actually had to wave down the nurse to come take out my IV and walk me out of the hospital. I had a cab called for me to take me home. And after waiting several minutes on the curb, the cab arrived. I hopped in and headed back to my home away from home. Ready to relax and heal, in the comforts of the Courtyard Marriott.
Strangely enough, the pain I felt didn’t come from the site of the surgery, but from my shoulders instead. I was told that in order to perform a successful laparoscopic surgery, air was pushed into my abdomen to enlarge my gut and make getting to the tumor easier. Well apparently there was still some air left over in my gut and it was now rising up to my shoulders causing pain and discomfort. Fortunately, that was the only real pain I felt from the surgery and it only lasted for a few days. All in all, my recovery over the weekend was smooth and I passed the time watching TV and reading a book.
I had more testing that was rescheduled for Monday and Tuesday. These were the tests that I was going to have done on Friday, but couldn’t because of the surgery. Dr. Bosch was off on vacation the week following my surgery so I never had the chance to meet with him again. But his remaining tests were simple enough and didn’t require much energy on my part.
I met with Dr. Madura on Tuesday as part of a post surgery consult. He checked my surgery incisions and said that things were healing nicely. He also said that it was too soon to know the results of the tumor biopsy. He said that the lymph node he removed looked big and nasty and he felt confident that he got the right one. Now we just sit back and wait for all the tests to come back and hopefully have some definitive answers. I made my way back to the hotel room and packed up my stuff. I was flying out early the next morning and had to be completely packed before heading to bed. I was leaving the Mayo Clinic without definitive answers, but hopefully that would all change in the next few days.
I stepped off the plane in Bellingham wearing my usual shorts and t-shirt and immediately felt the chill of the cool autumn air. It was 65 degrees outside and sunny. A perfect day for me any other time, but having spent nearly two weeks in the desert, it felt cold. And I couldn’t wait to put on a sweatshirt. I gathered up my luggage and waited on the curb for my ride. Erin pulled up and I was so happy to see her. I went to the Mayo Clinic hoping to find answers and was so certain of finding answers that if you had asked me how it would feel coming home without them, I would have probably at one time said it would be greatly disappointing - even soul crushing. But standing there on the curb watching Erin get out of the car and take me in her arms I couldn’t care less. I was home.
Two days later I received the call from Dr. John Camoriano. He asked how I was doing and then revealed that he had answers. And this time he was certain of it. He dove right into it and let me know that I had Hodgkin’s Lymphoma. Cancer. This is what I have. Apparently I have a very rare combination of cancer with a form of dysautonomia. Which means I have a disease or malfunction of the autonomic nervous system and in my case it was caused by my cancer. It was this disease that I was expressing symptoms for and not the cancer which is why it was so hard to diagnose the Hodgkin’s Lymphoma. But they were able to determine I had cancer from the tumor they removed and found the telling signs from the testing they administered. Dr. John Camoriano told me that mine was the first case he had ever seen. My particular combination of Anti-acetyl choline receptor antibodies on autonomic ganglia and Hodgkin’s Lymphoma had never been reported in all the literature that the Mayo Clinic had at their disposal and only one other case of Hodgkin’s Lymphoma combined with a dysautonomia was found.
So there you have it. I am unique and one of a kind. But we all knew that.
I took this news in stride and prepared myself for what was to come. I knew cancer treatment was now in my immediate future. I had the answers I had searched for and now I needed to switch my tactics from fact finding to problem solving. I have a problem. It is cancer. And now I intend to solve it.
Thursday, November 18, 2010
Thursday, October 21, 2010
If at first you don't succeed...
Amusing anecdote -
My daughter, Coren, asked my wife the other day who was in charge of our family?
Erin said “God is in charge of our family. But He asks Mommy and Daddy to help Him be in charge. And when Daddy isn‘t around, Mommy is in charge and when Mommy isn‘t around, Daddy is in charge. But God is in charge of all of us.”
Coren thought this over and replied “Hmmm, Sometimes I think Daddy thinks he’s God.”
I can't argue with that. It's true.
If at first you don’t succeed…
Wow. A lot has happened since my last post. And I can’t wait to tell you all about it. But first let me tell you what happened when I met with my Oncologist, Dr. Kominsky. A whole lotta nothing. Well, that’s not true, but it sure felt like it. Since numerous tumors were found in my PET scan, my first order of business with Dr. Kominsky was to get a biopsy. That sounds logical enough. I had a tumor under my left collar bone, a couple behind my heart and kidney, and another one in my lower gut. The tumor located under my left collar bone was determined to be the easiest to reach for a surgeon performing a biopsy. So Dr. Kominsky scheduled an appointment at the local hospital for me to have a needle biopsy. The procedure was pretty simple. I went to the hospital, checked in, dressed in the hospital garb, got wheeled into a laboratory office, received an injection of happy juice, felt a couple of pin pricks near my collar bone, and then got dressed and went home to await the results. Simple enough.
Now even before I had this biopsy, Dr. Kominsky was mentioning the possibility of Hodgkin’s Lymphoma. Because of the way the tumors were spread throughout my body and not confined to any specific internal organ, it appeared that they exhibited the patterns most associated with Lymphoma. A simple blood test was administered and immediately ruled out Non-Hodgkin’s which meant that if I did have Lymphoma, it would be the more treatable form of Hodgkin’s Lymphoma. That's good news.
Well after several days, I heard from Dr. Kominsky and was told that the result of my biopsy was inconclusive or non-diagnostic. It appears the pathologists did not get a good enough sample to determine much of anything. So a second needle biopsy was scheduled, this time with bigger needles. Once again I went to the hospital, got checked in, dressed up in the hospital garb, got wheeled into the same laboratory office, received some more happy juice, felt a couple of bigger pin pricks, and was wheeled back to my hospital room. Now unlike the first time, I wasn’t able to get dressed and go home right away because I had to have a bone marrow biopsy, as well. The doctors came in to my hospital room, had me flip over onto my stomach, and then used some sort of medieval boring tool to screw a hole into my hip and excavate marrow from my bone. Not pleasant. Not pleasant at all. But luckily I still had some residual happy juice in my system so I bared it with relative ease. Once they were finished and I had rested the required time, I got dressed, limped out of the hospital, and went home to wait again. Well, thankfully the bone marrow biopsy came back benign, but wouldn’t you know it - the results from the needle biopsy came back non-diagnostic. Again. Shoot! I guess they were still unable to determine anything from the needle biopsy sample size.
Dr. Kominsky was done fooling around now. He wanted a bigger, substantial sample that would prove once and for all that I have Hodgkin’s Lymphoma. It was decided that a large wedge-shaped section of the affected lymph node would be removed. As I met with the surgeon performing this operation, he told me the reasoning behind acquiring a larger biopsy sample. He said that with a needle biopsy a pathologist doesn’t always get a full assessment of the infected area. He likened it to a slice of pizza. If a person were to blindly grab with their fingers at a piece of pizza, they would likely get some cheese, tomato sauce, and crust. But chances are they would not grab all of the toppings of the pizza so they would not be able to determine what kind of pizza it was. So because he was going to go in and take out a slice of my lymph node, the pathologist would be able to see a whole slice with the cheese, the tomato sauce, the crust; but also the pepperoni and the olives and mushrooms and cancer. Hmmmm, yum. Cancer pizza. I asked a question that seemed logical at the time, “If it is better to get a slice of pizza, why not get the whole pizza? After all, I know a lot of people that get half pepperoni, half cheese on their pizza. What if I have a half benign, half malignant pizza?” Well, I was told that the complete removal of this particular lymph node would be tricky because it lies on top of some pretty major blood pathways. The surgeon did not feel comfortable slicing underneath the lymph node and risk possibly slicing up some things that are not meant to be sliced up. I appreciated his reluctance to needlessly slice me up and accepted that a slice was better than nothing.
I went to the surgeon’s office and got knocked out completely this time with some extremely powerful happy juice. An hour and a half later I woke up in a haze suffering from a severe sore throat - the tubes that were inserted into my throat to administer the anesthesia left me raw for a few days. I was asking for water for my throat when I saw Erin by my side talking to the surgeon. I heard a few words, not many, but what I did hear included “went well”, “good sample”, and “he did great”. That’s right! Did you hear that? I did great. I am able to lay motionless on a table for an hour and a half with the best of them.
Feeling confident that I will have answers from my latest biopsy, I looked forward to hearing from Dr. Kominsky. Unfortunately, when I heard from him I was greeted with more uncertain and vague results. The sample slice of the tumor was tested and deemed benign, but still looked highly unusual. It was sent to the NIH, National Institute of Health, for further review and hopefully, more clarity. Well, after three biopsies and three inconclusive results, Dr. Kominsky was a at a loss and decided it would be best if I stopped messing around and saw the big guns of medicine. He referred me to the Mayo Clinic and asked that I see an Oncologist and Neurologist to discuss my illness. I was scheduling the trip to Arizona and getting everything set up when we heard back from the NIH. They said that the sample they received was highly suspicious and they strongly suspected Hodgkin’s Lymphoma, but they wanted another lymph node, a whole one this time, to dissect and examine. Because my trip to the Mayo Clinic was just a couple of weeks away, Dr. Kominsky suggested I see the doctors in Arizona first and if they still didn’t have answers when I returned, then we would go ahead and remove another tumor. As it turns out, I didn’t have to wait to come back before having another tumor removed. I ended up leaving a piece of myself in Arizona. A Cancerous piece. But that will all be told in my next post, when I share the details of my trip to the wonderful land of Arizona and it’s fine medical facility.
We are almost caught up to the present and you have almost been told about my past year which means we can stop toiling over the past and start focusing on the days ahead. I’m looking forward to that.
My daughter, Coren, asked my wife the other day who was in charge of our family?
Erin said “God is in charge of our family. But He asks Mommy and Daddy to help Him be in charge. And when Daddy isn‘t around, Mommy is in charge and when Mommy isn‘t around, Daddy is in charge. But God is in charge of all of us.”
Coren thought this over and replied “Hmmm, Sometimes I think Daddy thinks he’s God.”
I can't argue with that. It's true.
If at first you don’t succeed…
Wow. A lot has happened since my last post. And I can’t wait to tell you all about it. But first let me tell you what happened when I met with my Oncologist, Dr. Kominsky. A whole lotta nothing. Well, that’s not true, but it sure felt like it. Since numerous tumors were found in my PET scan, my first order of business with Dr. Kominsky was to get a biopsy. That sounds logical enough. I had a tumor under my left collar bone, a couple behind my heart and kidney, and another one in my lower gut. The tumor located under my left collar bone was determined to be the easiest to reach for a surgeon performing a biopsy. So Dr. Kominsky scheduled an appointment at the local hospital for me to have a needle biopsy. The procedure was pretty simple. I went to the hospital, checked in, dressed in the hospital garb, got wheeled into a laboratory office, received an injection of happy juice, felt a couple of pin pricks near my collar bone, and then got dressed and went home to await the results. Simple enough.
Now even before I had this biopsy, Dr. Kominsky was mentioning the possibility of Hodgkin’s Lymphoma. Because of the way the tumors were spread throughout my body and not confined to any specific internal organ, it appeared that they exhibited the patterns most associated with Lymphoma. A simple blood test was administered and immediately ruled out Non-Hodgkin’s which meant that if I did have Lymphoma, it would be the more treatable form of Hodgkin’s Lymphoma. That's good news.
Well after several days, I heard from Dr. Kominsky and was told that the result of my biopsy was inconclusive or non-diagnostic. It appears the pathologists did not get a good enough sample to determine much of anything. So a second needle biopsy was scheduled, this time with bigger needles. Once again I went to the hospital, got checked in, dressed up in the hospital garb, got wheeled into the same laboratory office, received some more happy juice, felt a couple of bigger pin pricks, and was wheeled back to my hospital room. Now unlike the first time, I wasn’t able to get dressed and go home right away because I had to have a bone marrow biopsy, as well. The doctors came in to my hospital room, had me flip over onto my stomach, and then used some sort of medieval boring tool to screw a hole into my hip and excavate marrow from my bone. Not pleasant. Not pleasant at all. But luckily I still had some residual happy juice in my system so I bared it with relative ease. Once they were finished and I had rested the required time, I got dressed, limped out of the hospital, and went home to wait again. Well, thankfully the bone marrow biopsy came back benign, but wouldn’t you know it - the results from the needle biopsy came back non-diagnostic. Again. Shoot! I guess they were still unable to determine anything from the needle biopsy sample size.
Dr. Kominsky was done fooling around now. He wanted a bigger, substantial sample that would prove once and for all that I have Hodgkin’s Lymphoma. It was decided that a large wedge-shaped section of the affected lymph node would be removed. As I met with the surgeon performing this operation, he told me the reasoning behind acquiring a larger biopsy sample. He said that with a needle biopsy a pathologist doesn’t always get a full assessment of the infected area. He likened it to a slice of pizza. If a person were to blindly grab with their fingers at a piece of pizza, they would likely get some cheese, tomato sauce, and crust. But chances are they would not grab all of the toppings of the pizza so they would not be able to determine what kind of pizza it was. So because he was going to go in and take out a slice of my lymph node, the pathologist would be able to see a whole slice with the cheese, the tomato sauce, the crust; but also the pepperoni and the olives and mushrooms and cancer. Hmmmm, yum. Cancer pizza. I asked a question that seemed logical at the time, “If it is better to get a slice of pizza, why not get the whole pizza? After all, I know a lot of people that get half pepperoni, half cheese on their pizza. What if I have a half benign, half malignant pizza?” Well, I was told that the complete removal of this particular lymph node would be tricky because it lies on top of some pretty major blood pathways. The surgeon did not feel comfortable slicing underneath the lymph node and risk possibly slicing up some things that are not meant to be sliced up. I appreciated his reluctance to needlessly slice me up and accepted that a slice was better than nothing.
I went to the surgeon’s office and got knocked out completely this time with some extremely powerful happy juice. An hour and a half later I woke up in a haze suffering from a severe sore throat - the tubes that were inserted into my throat to administer the anesthesia left me raw for a few days. I was asking for water for my throat when I saw Erin by my side talking to the surgeon. I heard a few words, not many, but what I did hear included “went well”, “good sample”, and “he did great”. That’s right! Did you hear that? I did great. I am able to lay motionless on a table for an hour and a half with the best of them.
Feeling confident that I will have answers from my latest biopsy, I looked forward to hearing from Dr. Kominsky. Unfortunately, when I heard from him I was greeted with more uncertain and vague results. The sample slice of the tumor was tested and deemed benign, but still looked highly unusual. It was sent to the NIH, National Institute of Health, for further review and hopefully, more clarity. Well, after three biopsies and three inconclusive results, Dr. Kominsky was a at a loss and decided it would be best if I stopped messing around and saw the big guns of medicine. He referred me to the Mayo Clinic and asked that I see an Oncologist and Neurologist to discuss my illness. I was scheduling the trip to Arizona and getting everything set up when we heard back from the NIH. They said that the sample they received was highly suspicious and they strongly suspected Hodgkin’s Lymphoma, but they wanted another lymph node, a whole one this time, to dissect and examine. Because my trip to the Mayo Clinic was just a couple of weeks away, Dr. Kominsky suggested I see the doctors in Arizona first and if they still didn’t have answers when I returned, then we would go ahead and remove another tumor. As it turns out, I didn’t have to wait to come back before having another tumor removed. I ended up leaving a piece of myself in Arizona. A Cancerous piece. But that will all be told in my next post, when I share the details of my trip to the wonderful land of Arizona and it’s fine medical facility.
We are almost caught up to the present and you have almost been told about my past year which means we can stop toiling over the past and start focusing on the days ahead. I’m looking forward to that.
Wednesday, October 6, 2010
What the what?!?!
Okay. Where were we when I left off? I think I was going to have another MRI done to verify that I did not have MS, multiple sclerosis. Well, I won’t keep you in suspense any longer. I don’t have MS. Okay then, so what do I have? Interestingly enough, some blood work came back from my last visit with Dr. Mackay, my neurologist. The results showed an increase of a certain antibody within my body and from this result, Dr. Mackay was able to say with confidence that I had a neurological disorder known as Anti-acetyl choline receptors on the autonomic ganglia (not myasthenia gravis). What the what? You may be saying to yourself that this is some sort of made up diagnosis. That this is actually something doctors tell people when they have no idea what ails them. I know because I thought this same exact thought. But no, there is actually something known as anti-acetyl choline receptors on the autonomic ganglia. And I have it. It is extremely rare and there doesn’t appear to be much information concerning this particular disease. Dr. Mackay told me it was very treatable, however, and all I needed was a series of IVIG infusions, a week’s worth, and I would more than likely be fixed. And he said that once this illness is treated, that it doesn’t come back. I couldn’t believe it. I was so excited. I had an answer and it was a treatable one at that. I was told that my insurance company would need to approve treatment as it is very costly, but once that is done, I can come back and start treatment immediately. I went home, told my wife the good news, and waited for the insurance company to respond. Well, the insurance company responded. PAYMENT DENIED. You have to be kidding me! WHAT!?!?! Let me get this straight. I now know what is wrong with me and I have a method of treatment to make me well and the insurance company is denying payment?!?! My doctor’s office wasn’t too worried and they seemed to think this was quite normal. They said that insurance companies tend to deny expensive treatments straight away, but once an appeal with a strongly worded letter from a doctor is made, the insurance companies usually backs down and allows treatment. So a letter was drafted, a second appeal was made, and I sat back hoping for the best. Nope, not this time. PAYMENT DENIED. Again. Well, I am not going to lie to you. I was extremely perturbed. Some would say I was downright pissed off. Now get this - Because the medical system is completely looney, I only have three appeals per calendar year before my insurance company pulls the wool over their eyes and puts their fingers in their ears and starts singing “la la la, I can’t hear you. La la la.” After a denied third appeal, I have to wait until the next calendar year to begin the appeal process again. I was a bit worried that I would be turned down for a third time, so Dr. Mackay suggested that I see some other doctors and see if I can get them to sign off on the recommended treatment. Perhaps my third and last appeal could be made stronger if I had a panel of doctors all recommending the same thing.
So over the next few months I saw a whole slew of doctors and had a whole bunch of tests done. Some tests I had had before, but some were new. I told them all my sob story. And I answered all their questions. One Urologist I saw at Virginia Mason in Seattle wanted me to have a Urodynamics test. “Sure” I say, “Bring it“. I don’t know what this test is but I figure if it helps me get answers and gets my treatment then I am all for it. However, I now know that I really should look into what a test is before I arrogantly say “Bring it“. Lesson learned. For this test, the nurse inserts a catheter up the penis and drains you of all your urine. They push down on your abdomen and sensitive areas to ensure that every last drop is out of your bladder and then insert a couple of other tubes up the penis. One tube being a monitoring device and the other being a tube used to force liquid into the bladder. That’s right - INTO the bladder. You see, the purpose of this test is to fill your bladder with a known amount of liquid and then once full capacity is met, the patient is required to urinate the fluid back out while the muscles are monitored for functionality. All of this while being X-rayed. Well, if you recall, throughout this whole experience, my bladder has stretched to hold an insane amount of urine. So they took one bag of saline and injected it into my bladder.
“Okay, do you have to pee now?” they asked.
“Nope.” I said.
“Interesting.”
Bag number 2 comes out and more saline is injected.
“How about now?”
“Still nope.”
“Hmmph, well do you think you could urinate if we let you try a little longer. You see, we don’t want to put too much fluid into your bladder.”
“I appreciate that. I’ll try.”
So there I am. Standing naked in front of an x-ray technician, two nurses, and my doctor trying to urinate when I know I can’t. I physically can’t. Some time passes and I am obviously frustrating them as they slowly begin leaving the room one by one until I am standing there all alone. With tubes coming out of my penis - standing over a urine receptacle. Occasionally, the nurse pokes her head in the room. “Any luck?’ “Nope. I’m afraid not.” “Okay. Just keep trying.” Oh you mean I should be trying to pee. So that is what I am doing wrong. I haven’t been trying. Interesting. I’ll give that a shot. I’ll try now…
Sorry. I don’t mean to sound pouty, but I was extremely frustrated. I wanted out of there. I wanted to be done with that test and in my car heading north on I-5. Heading home. Finally. Thankfully. Something opens up and I am able to void my bladder completely. The x-ray technician is long gone by now so none of this was recorded by the x-ray machine. But I didn’t really care. And truth be told, I don’t think the doctor cared either. He could clearly see something was wrong and tells me as much. I let him know what Dr. Mackay found and asked him if he thought that sounded like a reasonable diagnosis. He said it sounded reasonable and then said he would add his name onto the insurance appeal. Yes!!! Success! One more doctor to add to the list. I thank him for his time and leave.
During this time I also saw a Neuro-Urologist at Virginia Mason. What a waste of time that was. After getting a physical and answering all the standard questions, I was told that I should try and drink more water and see if that helps. Thanks for the advice Mister Neuro-Urologist. Next!
I found my way to the University of Washington’s Neurology Department and met the nicest old man named Dr. Philip Swanson. This guy rocks. He found out I was a stay at home dad and told me to read his friend’s book, “The Kitchen Sink Papers”, which is about his friend’s experience as a stay at home dad. He asked about my kids and told me amusing anecdotes of his own grandkids. After our chit chat he administered his own examination. I told him about my diagnosis and wondered if he thought that might be a likely cause of my problems. He said it might be and ordered some blood work to verify the results obtained from Dr. Mackay several weeks before. I went down to the lab, drew some blood and went home. I came back a week later to meet with Dr. Swanson. He asked if I had a chance to read his friend’s book yet. I hadn’t and he looked a bit disappointed. I need to look up that book. He asked after my kids and told me to bring them next time as he would like to meet them. I told him I would. I won’t though. I don’t want to drag my kids through a hospital for half a day and have to worry about taking them to the potty when I am trying to meet with the doctors. But it was sweet of him to suggest it. Anyway, my blood work results confirmed the previous findings. However, instead of recommending IVIG treatment, Dr. Swanson suggested I have a PET scan administered. You see, our bodies do interesting things when fighting cancer and producing irregular volumes of antibodies is one such thing. Dr. Swanson wasn’t expecting to find cancer from the PET scan, but he said it’s better to be safe than sorry. So I had a PET Scan two weeks later and heard from Dr. Swanson a couple days after that.
“Well, hello there Nathan. How are the kids? “
“Fine, thank you.”
“Have you had a chance to look at that book yet.”
Dang!
“No, not yet I’m afraid.” I really have to look up that book.
“Well, I’m calling because we found some interesting results from your PET Scan.”
“Really? Interesting how?”
“Well, the scan revealed several tumor like growths throughout your body.”
“Wow. Really?”
“Yes, I’m afraid so. I think it’s best if you and Dr. Mackay contact the oncology department in Bellingham and get these growths looked at.”
“Ok. I will. Thank you.”
Enter Dr. Kominsky. My newest doctor. My oncologist.
So over the next few months I saw a whole slew of doctors and had a whole bunch of tests done. Some tests I had had before, but some were new. I told them all my sob story. And I answered all their questions. One Urologist I saw at Virginia Mason in Seattle wanted me to have a Urodynamics test. “Sure” I say, “Bring it“. I don’t know what this test is but I figure if it helps me get answers and gets my treatment then I am all for it. However, I now know that I really should look into what a test is before I arrogantly say “Bring it“. Lesson learned. For this test, the nurse inserts a catheter up the penis and drains you of all your urine. They push down on your abdomen and sensitive areas to ensure that every last drop is out of your bladder and then insert a couple of other tubes up the penis. One tube being a monitoring device and the other being a tube used to force liquid into the bladder. That’s right - INTO the bladder. You see, the purpose of this test is to fill your bladder with a known amount of liquid and then once full capacity is met, the patient is required to urinate the fluid back out while the muscles are monitored for functionality. All of this while being X-rayed. Well, if you recall, throughout this whole experience, my bladder has stretched to hold an insane amount of urine. So they took one bag of saline and injected it into my bladder.
“Okay, do you have to pee now?” they asked.
“Nope.” I said.
“Interesting.”
Bag number 2 comes out and more saline is injected.
“How about now?”
“Still nope.”
“Hmmph, well do you think you could urinate if we let you try a little longer. You see, we don’t want to put too much fluid into your bladder.”
“I appreciate that. I’ll try.”
So there I am. Standing naked in front of an x-ray technician, two nurses, and my doctor trying to urinate when I know I can’t. I physically can’t. Some time passes and I am obviously frustrating them as they slowly begin leaving the room one by one until I am standing there all alone. With tubes coming out of my penis - standing over a urine receptacle. Occasionally, the nurse pokes her head in the room. “Any luck?’ “Nope. I’m afraid not.” “Okay. Just keep trying.” Oh you mean I should be trying to pee. So that is what I am doing wrong. I haven’t been trying. Interesting. I’ll give that a shot. I’ll try now…
Sorry. I don’t mean to sound pouty, but I was extremely frustrated. I wanted out of there. I wanted to be done with that test and in my car heading north on I-5. Heading home. Finally. Thankfully. Something opens up and I am able to void my bladder completely. The x-ray technician is long gone by now so none of this was recorded by the x-ray machine. But I didn’t really care. And truth be told, I don’t think the doctor cared either. He could clearly see something was wrong and tells me as much. I let him know what Dr. Mackay found and asked him if he thought that sounded like a reasonable diagnosis. He said it sounded reasonable and then said he would add his name onto the insurance appeal. Yes!!! Success! One more doctor to add to the list. I thank him for his time and leave.
During this time I also saw a Neuro-Urologist at Virginia Mason. What a waste of time that was. After getting a physical and answering all the standard questions, I was told that I should try and drink more water and see if that helps. Thanks for the advice Mister Neuro-Urologist. Next!
I found my way to the University of Washington’s Neurology Department and met the nicest old man named Dr. Philip Swanson. This guy rocks. He found out I was a stay at home dad and told me to read his friend’s book, “The Kitchen Sink Papers”, which is about his friend’s experience as a stay at home dad. He asked about my kids and told me amusing anecdotes of his own grandkids. After our chit chat he administered his own examination. I told him about my diagnosis and wondered if he thought that might be a likely cause of my problems. He said it might be and ordered some blood work to verify the results obtained from Dr. Mackay several weeks before. I went down to the lab, drew some blood and went home. I came back a week later to meet with Dr. Swanson. He asked if I had a chance to read his friend’s book yet. I hadn’t and he looked a bit disappointed. I need to look up that book. He asked after my kids and told me to bring them next time as he would like to meet them. I told him I would. I won’t though. I don’t want to drag my kids through a hospital for half a day and have to worry about taking them to the potty when I am trying to meet with the doctors. But it was sweet of him to suggest it. Anyway, my blood work results confirmed the previous findings. However, instead of recommending IVIG treatment, Dr. Swanson suggested I have a PET scan administered. You see, our bodies do interesting things when fighting cancer and producing irregular volumes of antibodies is one such thing. Dr. Swanson wasn’t expecting to find cancer from the PET scan, but he said it’s better to be safe than sorry. So I had a PET Scan two weeks later and heard from Dr. Swanson a couple days after that.
“Well, hello there Nathan. How are the kids? “
“Fine, thank you.”
“Have you had a chance to look at that book yet.”
Dang!
“No, not yet I’m afraid.” I really have to look up that book.
“Well, I’m calling because we found some interesting results from your PET Scan.”
“Really? Interesting how?”
“Well, the scan revealed several tumor like growths throughout your body.”
“Wow. Really?”
“Yes, I’m afraid so. I think it’s best if you and Dr. Mackay contact the oncology department in Bellingham and get these growths looked at.”
“Ok. I will. Thank you.”
Enter Dr. Kominsky. My newest doctor. My oncologist.
Thursday, September 30, 2010
Chew and Swallow ... and say "Cheese"
It’s kind of like a coffin. Or what I would imagine a coffin would feel like. I know, weird as it may sound, I don’t try and spend too much of my free time laying around in coffins. But the MRI machine is close to what I would imagine one would feel like. The sides and front of the machine are insanely close to your body and I can understand why it freaks claustrophobic people out. I had had an MRI once before, a few years ago, so I knew what to expect. This time, unlike my previous experience, I was offered the chance to listen to some music while the MRI examination took place. They gave me a pair of headphones and offered me a choice of music to help drown out the noise of the machine. The nurse asked me what kind of music I liked and what I wanted to listen to during the procedure. I wasn’t sure and asked what kind of music was available. She said, “We have Blues, Jazz, Hip-Hop, Classical, Alternative…” I wasn’t sure what I felt like listening to so I went with what I assumed was a safe bet and said Alternative. At the last moment as I was being fed into the tube, I had a fear that it would be cheesy, mainstream alternative music like Creed or Fallout Boy or Linkin Park. And sure enough, it was. I was on my back and looking up at the rounded roof of the machine six inches from my face as the sweet dulcet tunes of Blink-182 began. “Aw (bleep)” I said under my breath. It wasn’t too soon after the music started that the cacophony of the MRI began. CHUNGA CHUNGA CHUNGA CHUNGA - tweep tweep tweep tweep - CHUNGA CHUNGA CHUNGA CHUNGA. After awhile I began focusing on the bangs and blips of the MRI to drown out the music being fed to me by the headphones. It was a mighty battle as to what least offensive noise would win out. In the end, I gave up and just took a nap.
With the MRI done and waiting to have my follow up with Dr. Mackay, I went back to my speech language pathologist for my Barium Swallow. I went into my speech pathologist’s (Patty‘s) office and was introduced to a whole new team of doctors and radiologists. Then I was escorted to a new section of the hospital and presented with a tray of soft foods. Bread, pudding, applesauce, etc. They placed an X-ray machine next to my head, covered my nether regions with a lead blanket, and then asked me to begin eating. The barium liquid that my food was dipped in or mixed into was pretty bland and kind of had a vanilla flavor. I almost didn’t even notice it except the fact that all the food had a weird milky white hue. While I was being given directions from the doctors who were standing behind a protective wall, I first began to notice something different about my swallowing. It had suddenly become easier to swallow and it felt better than it had in weeks and weeks. I thought to myself “This is great. I have a chance to show these people what is wrong with me and my throat decides to start functioning properly.” After working my way through the applesauce and pudding, I was asked to describe my problems I was having so that they could try and look for any complications. I guess they weren’t seeing any on their x-ray machine. I tried my best to describe my difficulties. How it felt like my throat would close and not allow any food to go down it. Or how the food would try to go back up my nose whenever I swallowed. Or how I had developed a little hiccup every time I swallowed a bite that was too big. They hadn’t seen anything yet of concern so they decided to have me swallow food that was bigger and might pose more trouble while swallowing. So I moved onto the bread. And thankfully this seemed to work as I immediately developed my problems again. “Whew,“ I thought, “You see? I’m not crazy.“ My hiccup was back and as I swallowed I had to stop and bring the food back up before swallowing again. I was actually thankful that the problems returned. After the bread, they were happy with the results obtained and came out from their protective lair to show me the video of me swallowing on a little monitor in the room. It was pretty cool to see an x-rayed image of my head as I chewed a bunch of food that illuminated on the screen. I saw my muscles working and the food moving around to the back of my throat and my little hiccups helping the food go down. Unfortunately, they weren’t able to really diagnose a problem but said they had a good baseline to refer back to if my problem got any worse. And that was all. They said thank you, have a good day, and I left.
I met with Dr. Mackay later that week to review my MRI. The images are pretty amazing as you get to see your brains and all that stuff right there in front of you. I was thankful that there were brains to see and they were pretty big if I do say so myself. New nickname - "Big Brains" Knudson. Dr. Mackay said that the images did not clearly show any signs of MS, multiple sclerosis, but that there were some blurry areas of concern. He didn’t like the quality of the images and asked me to get another MRI done so that he could say with more certainty that it wasn’t MS. Luckily for me, the lab downstairs had an opening that afternoon and I was able to get an MRI that same day. I walked into the MRI examination room with the confidence of a man having done this before. It was almost becoming commonplace. I laid down on my back and prepared myself for the coffin. I was handed the headphones and without even being asked I said “Classical, please.”
With the MRI done and waiting to have my follow up with Dr. Mackay, I went back to my speech language pathologist for my Barium Swallow. I went into my speech pathologist’s (Patty‘s) office and was introduced to a whole new team of doctors and radiologists. Then I was escorted to a new section of the hospital and presented with a tray of soft foods. Bread, pudding, applesauce, etc. They placed an X-ray machine next to my head, covered my nether regions with a lead blanket, and then asked me to begin eating. The barium liquid that my food was dipped in or mixed into was pretty bland and kind of had a vanilla flavor. I almost didn’t even notice it except the fact that all the food had a weird milky white hue. While I was being given directions from the doctors who were standing behind a protective wall, I first began to notice something different about my swallowing. It had suddenly become easier to swallow and it felt better than it had in weeks and weeks. I thought to myself “This is great. I have a chance to show these people what is wrong with me and my throat decides to start functioning properly.” After working my way through the applesauce and pudding, I was asked to describe my problems I was having so that they could try and look for any complications. I guess they weren’t seeing any on their x-ray machine. I tried my best to describe my difficulties. How it felt like my throat would close and not allow any food to go down it. Or how the food would try to go back up my nose whenever I swallowed. Or how I had developed a little hiccup every time I swallowed a bite that was too big. They hadn’t seen anything yet of concern so they decided to have me swallow food that was bigger and might pose more trouble while swallowing. So I moved onto the bread. And thankfully this seemed to work as I immediately developed my problems again. “Whew,“ I thought, “You see? I’m not crazy.“ My hiccup was back and as I swallowed I had to stop and bring the food back up before swallowing again. I was actually thankful that the problems returned. After the bread, they were happy with the results obtained and came out from their protective lair to show me the video of me swallowing on a little monitor in the room. It was pretty cool to see an x-rayed image of my head as I chewed a bunch of food that illuminated on the screen. I saw my muscles working and the food moving around to the back of my throat and my little hiccups helping the food go down. Unfortunately, they weren’t able to really diagnose a problem but said they had a good baseline to refer back to if my problem got any worse. And that was all. They said thank you, have a good day, and I left.
I met with Dr. Mackay later that week to review my MRI. The images are pretty amazing as you get to see your brains and all that stuff right there in front of you. I was thankful that there were brains to see and they were pretty big if I do say so myself. New nickname - "Big Brains" Knudson. Dr. Mackay said that the images did not clearly show any signs of MS, multiple sclerosis, but that there were some blurry areas of concern. He didn’t like the quality of the images and asked me to get another MRI done so that he could say with more certainty that it wasn’t MS. Luckily for me, the lab downstairs had an opening that afternoon and I was able to get an MRI that same day. I walked into the MRI examination room with the confidence of a man having done this before. It was almost becoming commonplace. I laid down on my back and prepared myself for the coffin. I was handed the headphones and without even being asked I said “Classical, please.”
Tuesday, September 28, 2010
Other Symptoms
During the time I started having urination difficulties, I also began developing other weird nonsensical symptoms. I first noticed my problem swallowing when I was playing a game of outdoor soccer and went to get a drink of water at halftime. I took a big gulp of water from my water bottle and for some weird reason when the water moved to the back of my throat it didn’t go where it was supposed to go. Half the water went down my throat with a painful swallow, but half the water went upwards at the back of my throat and out my nose. I stood there on the sidelines with water pouring out of my nostrils. It was like I was using one of those neti-pots thingies that you use to clean out your nasal passages. I had a stream of water shooting out of my nose. I wiped away the drippings from my nose and tried again. Same result. The water wanted to go up my nose instead of down my throat. Uh oh. What does THIS mean? Over the next few days I began to notice how difficult it had become to simply eat meals. I would take a bite of food and move it to the back of my throat and I swear, this is the only way to describe it, it felt as if my body “forgot” how to swallow. My body froze and my throat muscles ceased to work. I would move the food to the back of my throat and it went halfway down and then stopped - no further. I would bring the food back up, chew it again, take a smaller portion, and then move it back and try it again. Sometimes it went down, sometimes it didn’t. On more than one occasion I had to spit out my bites into a napkin because there was no way it was going down at that point in time. I eventually worked out a system of taking smaller bites, chewing thoroughly, and swallowing every bite of food with a drink of water. The water helped the food go down but I was always fighting to keep this new water-food slurry from going up my nose. I had asked my Urologist if he knew of anything that could be causing this behavior. He was bluntly honest and told me that was not the part of the body he dealt with, but that it sounded to be something caused by a neurological disorder. And since I had no structural or physical damage that was causing my urination difficulty, he said that was probably neurological, as well. So he referred me to my first Neurologist, Dr. Mackay.
I met with Dr. Mackay and described all my symptoms to him. The urination difficulty, the swallowing difficulty, and another problem that had recently surfaced - my itching. I first noticed the itching when I woke myself up one night scratching the back of my legs uncontrollably. I couldn’t believe how bad my legs itched. I scratched and scratched and scratched but I never felt relief. There was no rash or hives or anything of that sort - there was just an intense need to scratch an itch. This symptom wasn’t necessarily a painful one, but it was very irritating. And it would migrate as well. It started off on the back of my legs and would persist for two to three weeks before it moved to my upper back. Then after another couple of weeks it would move to my upper thigh and so on. The worst was when it spread to my face. I looked like I had a nervous tic or something as I was constantly scratching my face and squishing my nose and eyes to seek temporary relief. Even my eyeglasses as they rested on the bridge of my nose caused me to tear up from the sensitivity that now surrounded my face. Dr. Mackay heard about all of these symptoms and pretty much summed it all up when he said “humph, that’s bizarre.“ He’s a straight shooter that Dr. Mackay. I underwent all of his neurological tests, a lot of which had to do with my balance and muscle strength. They were actually kind of fun as I stood on one leg and touched my nose and walked back and forth with my eyes closed. I’m a pretty good walker so I passed those tests with ease. Once he finished his exam, he entered some notes in his computer and then ordered me to have an MRI of my head and spine. He told me his first thoughts were that I might have MS, Multiple Sclerosis. Difficulty urinating, trouble swallowing, and itching can all be signs of MS so he set me up for a time to have the MRI and made another appointment to see him in a couple weeks to discuss the results. But in the meantime, he wanted me to see someone concerning my difficulty swallowing. During my examination, Dr. Mackay had noted that my soft palate at the back of my throat wasn’t moving correctly when I opened my mouth and said “aahhh”. He referred me to see a speech language pathologist/speech therapist for an initial consult and swallow evaluation.
I met Patty, my speech language pathologist, the following week and conducted my initial examination in her office. She began by asking me to describe my swallowing difficulties and took down notes in her notebook as I spoke. After talking in great detail for about a half an hour, she left her office and returned with a tray of food from the hospital cafeteria. The tray had a slice of bread, some peas and carrots, a bowl of soup, some sort of chicken cacciatore, and a glass of juice to wash it all down. She asked me to go ahead and dig in while she sat back and watched. I must admit, it was a bit odd. I felt like I was in some strange fetish film and ate my food in silence as she just sat there watching, writing notes, and occasionally asking me questions or giving me directions. “Try swallowing this way” she would suggest, “Now turn your head to the left before you swallow to see if that might help.” It actually did help. After I had a good amount of the hospital food, Patty told me it was plain to see that I was having difficulty swallowing and she would like to administer another test known as a Barium Swallow. Once again, I will not bore you with all the specific details so feel free to google “Barium Swallow“ if you‘d like. But basically it is a test in which I eat bits of food soaked in a chemical liquid known as barium that shows up on an x-ray machine. Images of my swallowing are recorded by an x-ray video machine and the barium helps to illuminate the food and shows its flow as it moves down my esophagus. By using x-rays, the specialists can get a better idea as to where any problems might be occurring along my upper digestive tract. Of course I wasn’t able to do the X-ray test during this appointment. No. Of course not. Instead, I had to set up another time to come in and perform the barium swallow. Now, on a side note, it seems to me that doctors enjoy setting up appointments. Why else would it be that every time I go and see a doctor, it appears that I leave with another appointment or two set up for some future date? Appointments, appointments, appointments. I am always scheduling appointments. I have become a master appointment maker. If only there was a way to harness this talent and use it for good. I haven’t thought of it yet. If you have any thoughts, let me know. Anyway, on the bright side, at least I was making the necessary appointments to see the doctors to try to find the answers to my mystery illness. I was working my way towards a finish line and it felt good taking the steps needed to get there.
So I have just reread what I have written so far and I am a little bothered by how depressing and gloomy it sounds. I have only tried to write what has happened to me this past year to give you all an idea of what I am going through, but how boring it must be to read about this doctor’s visit and that doctor’s visit and blah and blah. So I think I am going to stop here for the day. To give you and myself a break. Don’t worry though. I have plenty of doctor’s visits to tell you about in future posts.
I also thought this would be a good time to tell you about an incident I had with my daughter the other day.
So I was sitting in the living room reading a magazine when my 4 year old daughter walked up to me and said, “Dad, do you want me to grow?”. She had asked this question in an accusatory tone as if she thought I had secretly never wanted her to grow. And that she had finally found out my secret and was now onto me.
I was taken aback and said “Of course I want you to grow. Why?”.
“Because if you want me to grow you need to get me dannun-go-guhs. They help you grow.” she said.
“dannun what? They help you - wait. What?!”
“Grow dad, they help you grow. And you can make popsicles out of them.”
“What are you talking about? Where did you hear this?”
“On TV, on a commercial. Dannun go-guhs help you GROW”.
Clarity finally dawned on me, “Do you mean Dannon Go-gurt?”
“Yes. Dannon go-guh. Can we get it?”
“We’ll see.” I say.
This response is good enough for my daughter and she leaves me to my reading, but not before yelling back over her shoulder as she exits the room, “And you can make popsicles out of them!”
This is the reason we prefer commercial-free PBS.
I met with Dr. Mackay and described all my symptoms to him. The urination difficulty, the swallowing difficulty, and another problem that had recently surfaced - my itching. I first noticed the itching when I woke myself up one night scratching the back of my legs uncontrollably. I couldn’t believe how bad my legs itched. I scratched and scratched and scratched but I never felt relief. There was no rash or hives or anything of that sort - there was just an intense need to scratch an itch. This symptom wasn’t necessarily a painful one, but it was very irritating. And it would migrate as well. It started off on the back of my legs and would persist for two to three weeks before it moved to my upper back. Then after another couple of weeks it would move to my upper thigh and so on. The worst was when it spread to my face. I looked like I had a nervous tic or something as I was constantly scratching my face and squishing my nose and eyes to seek temporary relief. Even my eyeglasses as they rested on the bridge of my nose caused me to tear up from the sensitivity that now surrounded my face. Dr. Mackay heard about all of these symptoms and pretty much summed it all up when he said “humph, that’s bizarre.“ He’s a straight shooter that Dr. Mackay. I underwent all of his neurological tests, a lot of which had to do with my balance and muscle strength. They were actually kind of fun as I stood on one leg and touched my nose and walked back and forth with my eyes closed. I’m a pretty good walker so I passed those tests with ease. Once he finished his exam, he entered some notes in his computer and then ordered me to have an MRI of my head and spine. He told me his first thoughts were that I might have MS, Multiple Sclerosis. Difficulty urinating, trouble swallowing, and itching can all be signs of MS so he set me up for a time to have the MRI and made another appointment to see him in a couple weeks to discuss the results. But in the meantime, he wanted me to see someone concerning my difficulty swallowing. During my examination, Dr. Mackay had noted that my soft palate at the back of my throat wasn’t moving correctly when I opened my mouth and said “aahhh”. He referred me to see a speech language pathologist/speech therapist for an initial consult and swallow evaluation.
I met Patty, my speech language pathologist, the following week and conducted my initial examination in her office. She began by asking me to describe my swallowing difficulties and took down notes in her notebook as I spoke. After talking in great detail for about a half an hour, she left her office and returned with a tray of food from the hospital cafeteria. The tray had a slice of bread, some peas and carrots, a bowl of soup, some sort of chicken cacciatore, and a glass of juice to wash it all down. She asked me to go ahead and dig in while she sat back and watched. I must admit, it was a bit odd. I felt like I was in some strange fetish film and ate my food in silence as she just sat there watching, writing notes, and occasionally asking me questions or giving me directions. “Try swallowing this way” she would suggest, “Now turn your head to the left before you swallow to see if that might help.” It actually did help. After I had a good amount of the hospital food, Patty told me it was plain to see that I was having difficulty swallowing and she would like to administer another test known as a Barium Swallow. Once again, I will not bore you with all the specific details so feel free to google “Barium Swallow“ if you‘d like. But basically it is a test in which I eat bits of food soaked in a chemical liquid known as barium that shows up on an x-ray machine. Images of my swallowing are recorded by an x-ray video machine and the barium helps to illuminate the food and shows its flow as it moves down my esophagus. By using x-rays, the specialists can get a better idea as to where any problems might be occurring along my upper digestive tract. Of course I wasn’t able to do the X-ray test during this appointment. No. Of course not. Instead, I had to set up another time to come in and perform the barium swallow. Now, on a side note, it seems to me that doctors enjoy setting up appointments. Why else would it be that every time I go and see a doctor, it appears that I leave with another appointment or two set up for some future date? Appointments, appointments, appointments. I am always scheduling appointments. I have become a master appointment maker. If only there was a way to harness this talent and use it for good. I haven’t thought of it yet. If you have any thoughts, let me know. Anyway, on the bright side, at least I was making the necessary appointments to see the doctors to try to find the answers to my mystery illness. I was working my way towards a finish line and it felt good taking the steps needed to get there.
So I have just reread what I have written so far and I am a little bothered by how depressing and gloomy it sounds. I have only tried to write what has happened to me this past year to give you all an idea of what I am going through, but how boring it must be to read about this doctor’s visit and that doctor’s visit and blah and blah. So I think I am going to stop here for the day. To give you and myself a break. Don’t worry though. I have plenty of doctor’s visits to tell you about in future posts.
I also thought this would be a good time to tell you about an incident I had with my daughter the other day.
So I was sitting in the living room reading a magazine when my 4 year old daughter walked up to me and said, “Dad, do you want me to grow?”. She had asked this question in an accusatory tone as if she thought I had secretly never wanted her to grow. And that she had finally found out my secret and was now onto me.
I was taken aback and said “Of course I want you to grow. Why?”.
“Because if you want me to grow you need to get me dannun-go-guhs. They help you grow.” she said.
“dannun what? They help you - wait. What?!”
“Grow dad, they help you grow. And you can make popsicles out of them.”
“What are you talking about? Where did you hear this?”
“On TV, on a commercial. Dannun go-guhs help you GROW”.
Clarity finally dawned on me, “Do you mean Dannon Go-gurt?”
“Yes. Dannon go-guh. Can we get it?”
“We’ll see.” I say.
This response is good enough for my daughter and she leaves me to my reading, but not before yelling back over her shoulder as she exits the room, “And you can make popsicles out of them!”
This is the reason we prefer commercial-free PBS.
Tuesday, September 21, 2010
The beginning
It all started a year ago. September 24th to be exact. A date I would have forgotten had it not been for my wonderfully organized wife, Erin, who had the foresight to write down the date so that we might know when it all started in the future. I woke up in the morning and went to the bathroom to relieve myself. I stood over the toilet bowl and waited. And waited. And waited. I thought, “This is strange.” After several more moments I was finally able to produce a slow, weak stream of urine. I finished up and left the bathroom making sure to make a mental note of what had just happened. Throughout that day, urinating did not become any easier. In fact, it became more and more difficult to produce any urine at all. The next day was just as bad and it was that evening when Erin and I had a chance to go out to dinner without the kids that I informed her that I hadn’t been able to pee for more than 24 hours. I was starting to get genuinely concerned and we agreed that I would call my doctor the next day. I got in to see my doctor a couple of days later and he gave me a general examination. He examined me top to bottom and then asked me to go pee in a cup. I thought to myself that if I could pee in a cup, I wouldn’t be in your office today. But nonetheless, I went to the doctor’s bathroom and after 20 minutes I was able to produce enough of a sample for them to use. I was then referred to see a urologist and made the necessary arrangements to meet him the following week. During this time, my situation became more and more painful as my bladder was always full of urine and I was unable to fully relieve myself. When I could go to the bathroom, it was in little amounts and with great effort. It was almost as if my bladder had reached it’s maximum volume and I was just able to siphon off enough urine to give myself a little relief. I was never able to empty it completely. My first meeting with my urologist came and he also gave me an examination. His was a bit more invasive this time as he did all the poking and prodding necessary (too much poking for my comfort) and afterwards came to no real diagnosis. He gave me a prescription for a medication to treat an overactive prostate and planned on seeing me again in a week’s time. Well the medication did nothing for my symptoms and by this time my days were becoming increasingly unbearable. I would be in constant pain and discomfort as I had the urge to go pee all the time. Nights were worse. I would fall asleep for an hour and then wake up in terrible pain. I would get up and pace until the pain subsided, try and go to the bathroom, and then hopefully an hour later I would be able to doze off for another hour of sleep before I was awakened by another round of pain and pacing. That was how my nights were - an hour of sleep, an hour of pacing, an hour of sleep, and so on. I finally had my next appointment with my urologist and it was during this appointment that I had my first ever (and hopefully last ever) cystoscopy. If you are not familiar with what a cystoscopy is, you may want to take a break from reading at this time and look it up on wikipedia. I would describe the procedure to you myself, but fear I would mix up the technical jargon with other choice descriptive words that may be too blue for some readers. While my urologist performed the cystoscopy, he was able to examine my urethra, prostate, bladder, and abdomen wall. He said everything looked fine and nothing raised a red flag. I told him when he was done that I had to use the bathroom and he told me that my bladder had looked incredibly full and left the room for me to do so. Of course I wasn’t able to go. My urologist came back in the room and asked if I had any success and I told him I hadn’t. This troubled him, because he had seen firsthand how full my bladder was. He ordered an ultrasound to try and ascertain the fullness of my bladder. Afterwards we agreed that it was very full. And yet, even after trying again, I was unable to relieve myself. This is when he left the room and returned with the bane of my life for the next 12 months. The catheter. He told me what it was and what to do with it. I felt like telling him to stop joking around but before I could, he left me in the room with his nurse as my assistant and told me to give it a go. Now for a catheter to be successful, it is of utmost importance that you use copious amounts of lubrication. I know what you are thinking. “Do I really want to put all that lubricating gunk up my you-know-what?” Believe me. You do. My first attempt was not lubricated near enough and after pushing halfway up I met some resistance and I had a bit more pain than I wanted to tolerate, so I pulled it back out. “You okay?” asked the nurse. NO! NO! I’m not okay!! I’m a healthy 32 year old man! I should not be pushing this 16 inch tube up my penis! I didn’t say that of course. I just smiled and gave it another go. This time I had plenty of lubrication and the tube found it’s way up and in with greater ease. Another important point to make is that right before the catheter reaches your bladder, it must push through your abdominal sphincter first. When I pushed the catheter up to that sphincter, I met such a resistance that I thought something was wrong. I asked the nurse and she just said I needed to push harder. I tried. Too painful. I tried again. Too painful. By now I had had enough and wanted no more of this catheter. Without thinking I pulled the catheter straight out, burning as it came. My nurse went to get my doctor and he returned a short while later. He asked what was wrong and I told him. I couldn’t get the catheter all the way in. He understood my frustration and asked me to try it again, but this time when the catheter gets to my sphincter, try and relax my sphincter as if I am trying to urinate. He said this might loosen my sphincter enough to help push the catheter through. So here I was with my doctor and nurse watching, trying to get the catheter in place for the third time. Remembering his advice, I tried loosening my sphincter as best I could, and lo and behold, it worked! Immediately urine started flowing out the end of the tube and into a receptacle that my urologist placed underneath. Now as much as I hate catheters, the word catheter, and everything that is catheter, I have to admit, I have never experienced such bliss and euphoria as that moment when the catheter was in place and the urine began to flow. I had such great relief that I almost shed tears of joy. For the first time in nearly three weeks, I had voided my bladder entirely. In the end, the receptacle held approximately 1.1 liters of urine. My urologist said that was a lot. I believed him.
An introduction
Okay. So here it is. I have decided to start this blog because I have had a very interesting year concerning my health and throughout this year I have had numerous repeated inquiries as to my well being. I have been trying to keep people updated with my status as best I can, but have recently thought that I might be able to better inform people by submitting updates onto this blog. My hope is that by putting all the latest news at this one location then people can come and become better informed and I may get a slight reprieve from all the questions and inquiries that plague me on a daily basis. Well, plague might be a bit too harsh. I am truly blessed and feel genuinely loved by my friends and family at this time. And it is never just one person or one set of persons that bombard me with phone calls or inquiries. It’s just that I have a large number of people that want to check up on me from time to time and it just happens that I get checked on regularly by someone different every day. I know, I know, it’s a curse feeling so loved and if there is anything this illness has truly taught me, it is how truly loved I feel. And I say that with sincere honesty and without guile - it has indeed been amazing to experience all the warmth and love of my friends and family. BUT having said that, it can become very tiring letting people know how I am doing day after day after day, and ultimately, it is extremely depressing when I have no good news to report. So it is with complete selfishness that I am starting this blog in hopes to get a bit of a break. But by no means do I want you to stop calling and checking up on me. It’s just that in those times when I am unavailable, or more truthfully, don’t feel like answering the phone, you can come here and get acquainted with my current situation and maybe even read some amusing anecdotes, to boot!
So here it is. The blog from my past year and the days ahead.
Let’s start at the beginning.
So here it is. The blog from my past year and the days ahead.
Let’s start at the beginning.
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