Thursday, November 29, 2007
Health Update
Two days ago I posted I was showing early signs of pneumonia. The antibiotics have quickly addressed the issue. My fever went from a peak of 101 on Tuesday evening, to 99 on Wednesday and normal through most of today.
Prologue
This post is out of sequence, but provides a complete summary of my two year journey to this point. I hope this story will motivate you to actively research and partner with your doctor and ask questions to learn your way through whatever personal or family health situations you face.
Over Christmas of 2005, I sensed the beginnings of a sore throat. I took AirBorne to fight the virus. Early sensations of a sore throat continued off and on through the balance of the winter. However, I never had the traditional body aches that accompany a head cold. Over spring break, I visited my family doctor who prescribed antibiotics to fight the symptoms.
By late June and another trip the family doctor, I moved to an ear-nose-throat specialist. After a few rounds of treatment that brought short-term, but no long-term success, he ordered a head and neck CT scan. The films did not reveal anything unusual. The ENT continued more tests and treatments including a biopsy of my right lingual tonsil in November of 2006. Test results showed no abnormalities.
Through 2006, difficulty and pain swallowing continued to build in waves, but the pain was never accompanied by body aches or fever. Each wave resulted in more intense symptoms. What began as minor irritation with swallowing and eating early in 2006, advanced to a narrowing set of foods in my diet. Bulky foods like Raisin Bran, heavy breads and meats took a lot of effort and were painful to eat. I also began taking Ibuprofen in the early fall to help manage the discomfort brought about by eating and playing my trumpet.
In January of 2007, my ENT physician decided it best to tap into University of Kansas Medical Center expertise. The second specialist I saw at KU Med suggested I had all the symptoms of a nerve disorder called glossophyrangeal neuralgia (GN). He prescribed anticonvulsant drugs, which provided quick and noticeable relief. However, after several days the improvement in pain faded, and returned to previous levels. It was recommended I up the dosage, which helped for a few days and then the pain and inability to swallow returned. This pattern is typical for GN patients.
Given the GN diagnosis fit my symptoms and the treatments had some positive results, I searched the Internet for experts on this neuralgia. I discovered several references to a physician in Pittsburgh who devised a surgery to resolve the neuralgia for which I had been diagnosed. I sent an email to him and went to see him in July. He prescribed a more aggressive anticonvulsant and we discussed surgery options.
In late June, I began to notice minor changes in my speech. By August speaking had become difficult all of the time, and I my speech sounded similar to a deaf person. Additionally, discomfort in my throat was now constant. GN symptoms are sporadic, not persistent. A clue I recognized and brought up with my doctors, but nerve disorders manifest in many different ways.
After several delays scheduling surgery, a November first date was set for an operation that would decompress blood vessels surrounding the ninth cranial nerve. This point in the journey marks a dramatic shift in my path to a cure for this ailment that began nearly two years prior.
Day of Scheduled Brain Surgery
The morning of November first, I remember seeing 11:50 AM on the wall in the operating room. The next I recall I saw 12:45 PM on the clock and wondered if all was well. I expected to be out of surgery after 2:00 PM. I was sedated, so I was not panicked, but I knew something was not right. The physician came so see me about 30 minutes later and told me they were not able to intubate (insert an air tube) me and had to cancel surgery. He ordered CT scan of my neck and informed me I would be in the hospital through the next day. He had secured their best ENT group to begin additional diagnosis.
On November second, the surgeon stopped by my hospital room in the morning to let me know he read the CT, but there was still more work to be done. Later that morning three pathologist came to my hospital room and each performed a biopsy of the lymph node in my neck without any anesthesia (Ouch!). They used a portable lab to read and discuss their findings outside my room. Another hour or so passed until an ENT stopped in to perform his evaluation. Theresa and my mom had left earlier for lunch. When he finished, he announced both his exam, the CT scan and the pathology results indicated I had cancer.
After the ENT left the room, I sat somewhat stunned by myself for perhaps 20 minutes or so. I used my iPhone to research what I assumed I had, cancer in the base of my tongue. When my Theresa and mom returned, I informed them of the new diagnosis. We grappled with it and I shared the web sites I found, which pointed toward a wide range of cure rates. There was a still a lot to learn. I asked for some paper and we began to plot a plan. The doctors suggested we head back to Kansas City to gain a second opinion.
We were discharged from the hospital around 4:00 PM that afternoon. We decided to drive back to KC that evening. As one could imagine, we just wanted to get home and begin dealing with this situation. We checked out of the hotel and hit the highway for KC by 5:30.
The trip back to KC was surreal. The good news is we finally knew what battle we were fighting. Our conversation was centered on our faith and positive actions we should take. My brother lives in St Louis. We were able to have lunch and spend time with Greg on Saturday.
That evening we arrived at home and broke the news to Elliott and Audrey. It was an emotional time. We focused our conversation on our faith and beliefs, and did our best to center and ground the family in preparation for this trial. Since the kids were young, we have set aside family time to study our faith and beliefs. Theresa and I always believed our primary role, as parents, is to instill values, beliefs and meaning from which our kids can make quality choices. No, our kids have not always made the best decisions, but we have done our best to give them the tools to make good choices. While Theresa and I are watching the kids closely nowadays, its good to see the wisdom we have taught them come to the surface in their words and actions.
Over Christmas of 2005, I sensed the beginnings of a sore throat. I took AirBorne to fight the virus. Early sensations of a sore throat continued off and on through the balance of the winter. However, I never had the traditional body aches that accompany a head cold. Over spring break, I visited my family doctor who prescribed antibiotics to fight the symptoms.
By late June and another trip the family doctor, I moved to an ear-nose-throat specialist. After a few rounds of treatment that brought short-term, but no long-term success, he ordered a head and neck CT scan. The films did not reveal anything unusual. The ENT continued more tests and treatments including a biopsy of my right lingual tonsil in November of 2006. Test results showed no abnormalities.
Through 2006, difficulty and pain swallowing continued to build in waves, but the pain was never accompanied by body aches or fever. Each wave resulted in more intense symptoms. What began as minor irritation with swallowing and eating early in 2006, advanced to a narrowing set of foods in my diet. Bulky foods like Raisin Bran, heavy breads and meats took a lot of effort and were painful to eat. I also began taking Ibuprofen in the early fall to help manage the discomfort brought about by eating and playing my trumpet.
In January of 2007, my ENT physician decided it best to tap into University of Kansas Medical Center expertise. The second specialist I saw at KU Med suggested I had all the symptoms of a nerve disorder called glossophyrangeal neuralgia (GN). He prescribed anticonvulsant drugs, which provided quick and noticeable relief. However, after several days the improvement in pain faded, and returned to previous levels. It was recommended I up the dosage, which helped for a few days and then the pain and inability to swallow returned. This pattern is typical for GN patients.
Given the GN diagnosis fit my symptoms and the treatments had some positive results, I searched the Internet for experts on this neuralgia. I discovered several references to a physician in Pittsburgh who devised a surgery to resolve the neuralgia for which I had been diagnosed. I sent an email to him and went to see him in July. He prescribed a more aggressive anticonvulsant and we discussed surgery options.
In late June, I began to notice minor changes in my speech. By August speaking had become difficult all of the time, and I my speech sounded similar to a deaf person. Additionally, discomfort in my throat was now constant. GN symptoms are sporadic, not persistent. A clue I recognized and brought up with my doctors, but nerve disorders manifest in many different ways.
After several delays scheduling surgery, a November first date was set for an operation that would decompress blood vessels surrounding the ninth cranial nerve. This point in the journey marks a dramatic shift in my path to a cure for this ailment that began nearly two years prior.
Day of Scheduled Brain Surgery
The morning of November first, I remember seeing 11:50 AM on the wall in the operating room. The next I recall I saw 12:45 PM on the clock and wondered if all was well. I expected to be out of surgery after 2:00 PM. I was sedated, so I was not panicked, but I knew something was not right. The physician came so see me about 30 minutes later and told me they were not able to intubate (insert an air tube) me and had to cancel surgery. He ordered CT scan of my neck and informed me I would be in the hospital through the next day. He had secured their best ENT group to begin additional diagnosis.
On November second, the surgeon stopped by my hospital room in the morning to let me know he read the CT, but there was still more work to be done. Later that morning three pathologist came to my hospital room and each performed a biopsy of the lymph node in my neck without any anesthesia (Ouch!). They used a portable lab to read and discuss their findings outside my room. Another hour or so passed until an ENT stopped in to perform his evaluation. Theresa and my mom had left earlier for lunch. When he finished, he announced both his exam, the CT scan and the pathology results indicated I had cancer.
After the ENT left the room, I sat somewhat stunned by myself for perhaps 20 minutes or so. I used my iPhone to research what I assumed I had, cancer in the base of my tongue. When my Theresa and mom returned, I informed them of the new diagnosis. We grappled with it and I shared the web sites I found, which pointed toward a wide range of cure rates. There was a still a lot to learn. I asked for some paper and we began to plot a plan. The doctors suggested we head back to Kansas City to gain a second opinion.
We were discharged from the hospital around 4:00 PM that afternoon. We decided to drive back to KC that evening. As one could imagine, we just wanted to get home and begin dealing with this situation. We checked out of the hotel and hit the highway for KC by 5:30.
The trip back to KC was surreal. The good news is we finally knew what battle we were fighting. Our conversation was centered on our faith and positive actions we should take. My brother lives in St Louis. We were able to have lunch and spend time with Greg on Saturday.
That evening we arrived at home and broke the news to Elliott and Audrey. It was an emotional time. We focused our conversation on our faith and beliefs, and did our best to center and ground the family in preparation for this trial. Since the kids were young, we have set aside family time to study our faith and beliefs. Theresa and I always believed our primary role, as parents, is to instill values, beliefs and meaning from which our kids can make quality choices. No, our kids have not always made the best decisions, but we have done our best to give them the tools to make good choices. While Theresa and I are watching the kids closely nowadays, its good to see the wisdom we have taught them come to the surface in their words and actions.
Tuesday, November 27, 2007
A quick update as of Tuesday evening.
First, I've included a picture of me preparing for radiation treatment. This will help you gain a sense of the experience, including the mesh mask that snaps tightly over my head and neck. The daily treatments last a little over 15 minutes. The choking feeling I initially had when snapped into the mask is abating as I become more familiar with this procedure. The protocol calls for six treatments a week (two on Friday) for six weeks. I am currently two days into the second week of radiation treatments.
Second, I've developed early signs of pneumonia. I'm on antibiotics, which are helping me fight a low grade fever. We caught this early, and hope to put this risk at bay in the next day or so.
Monday, November 26, 2007
Back Home
A little after noon today, I was released from the hospital. Feels great to be home!
On Sunday morning, one of the doctors made it clear I would not be released from the hospital until Theresa and I could demonstrate we were able to care for my needs without the hospital staff, including the ability to take in adequate nutrition. After the doctor left, I created a table on the whiteboard in my room to record water and liquid food intake through my PEG tube. I knew it was important for me to increase the 8 ounces of liquid food I had ingested daily Thursday, Friday and Saturday.
Those who know me would not be surprised to hear having a goal, even small like this, helped me turn the corner. It was an emotional boost to achieve these little successes of filling out lines of the chart throughout the day.
By the end of Sunday, I consumed 70 ounces of fluids, 25 of which were food. I also moved around the room on my own and planned out small routine tasks to keep my mind focused on doing normal activities. So far today, I’m on track to exceed Sunday’s food intake and meet the targets set by my nutritionist. As I went to sleep on Sunday evening, I anticipated achieving even better nutritional intake Monday.
Knowing I have another round of chemo on December 10th, I’m making plans increase my physical capacity to tolerate the treatment, albeit small, over the next two weeks. This will include walking on a treadmill and exceeding my recommended caloric intake. I hope to be at a higher weight when I begin the next round of chemo. I know its important to move at a measured pace. I look forward to improving my physical condition over the next two weeks to prepare myself for the final round of chemo.
I met with both my chemo and radiation doctors today. The radiation doctor indicated he does not look for any change in a patients tumor until the second week of radiation treatments. He was surprised my voice began to return late last week, and said that was a very good sign. While physical examination indicates the tumor size has not changed perceptibly, it has softened considerably.
A review of responses to this blog demonstrates I have been blessed with a rich and diverse set of friends. I appreciate the different and unique relationships I have with each single one of you.
On Sunday morning, one of the doctors made it clear I would not be released from the hospital until Theresa and I could demonstrate we were able to care for my needs without the hospital staff, including the ability to take in adequate nutrition. After the doctor left, I created a table on the whiteboard in my room to record water and liquid food intake through my PEG tube. I knew it was important for me to increase the 8 ounces of liquid food I had ingested daily Thursday, Friday and Saturday.
Those who know me would not be surprised to hear having a goal, even small like this, helped me turn the corner. It was an emotional boost to achieve these little successes of filling out lines of the chart throughout the day.
By the end of Sunday, I consumed 70 ounces of fluids, 25 of which were food. I also moved around the room on my own and planned out small routine tasks to keep my mind focused on doing normal activities. So far today, I’m on track to exceed Sunday’s food intake and meet the targets set by my nutritionist. As I went to sleep on Sunday evening, I anticipated achieving even better nutritional intake Monday.
Knowing I have another round of chemo on December 10th, I’m making plans increase my physical capacity to tolerate the treatment, albeit small, over the next two weeks. This will include walking on a treadmill and exceeding my recommended caloric intake. I hope to be at a higher weight when I begin the next round of chemo. I know its important to move at a measured pace. I look forward to improving my physical condition over the next two weeks to prepare myself for the final round of chemo.
I met with both my chemo and radiation doctors today. The radiation doctor indicated he does not look for any change in a patients tumor until the second week of radiation treatments. He was surprised my voice began to return late last week, and said that was a very good sign. While physical examination indicates the tumor size has not changed perceptibly, it has softened considerably.
A review of responses to this blog demonstrates I have been blessed with a rich and diverse set of friends. I appreciate the different and unique relationships I have with each single one of you.
Saturday, November 24, 2007
November 24 Update:: Chemo Hits with a Vengeance
I will not use this blog as a way to detail my physical discomfort. Everyone who is affected by cancer and its aggressive treatments must endure unpleasant effects. This disease does not discriminate. The healing process is a journey. Here’s an update from the past few days.
Around 4:00 AM Thursday morning, Theresa and I realized managing my condition was beyond our ability and we checked into NKC Hospital. For the next few days, I slept, took meds, made it to my scheduled radiation treatment and had a few brief conversations with doctors and nurses. The health care professionals have been nothing short of amazing.
When I asked the chemo doctor about my nausea, she indicated cancer patients in the past rejected additional treatments of the type of chemo I’m receiving, even thought it was the only proven remedy for a specific cancer. Thankfully, there is a recent anti-nausea drug that reduces its side-effects. What a horrible thought to know there is a drug that will cure you, but you can’t bring yourself to accept treatment because of the severe side effects. I keep telling myself this is a small price to pay for the potential to put this challenge behind me.
Now some good news. This morning (Saturday) I called Theresa and she began crying. Why? My voice has begun to show signs its returning to normal. While there is still a long journey ahead, it is comforting to see God’s hand begin the healing process. If all goes well, I’ll be released Sunday or Monday.
Thank you for your continued prayers and support.
Around 4:00 AM Thursday morning, Theresa and I realized managing my condition was beyond our ability and we checked into NKC Hospital. For the next few days, I slept, took meds, made it to my scheduled radiation treatment and had a few brief conversations with doctors and nurses. The health care professionals have been nothing short of amazing.
When I asked the chemo doctor about my nausea, she indicated cancer patients in the past rejected additional treatments of the type of chemo I’m receiving, even thought it was the only proven remedy for a specific cancer. Thankfully, there is a recent anti-nausea drug that reduces its side-effects. What a horrible thought to know there is a drug that will cure you, but you can’t bring yourself to accept treatment because of the severe side effects. I keep telling myself this is a small price to pay for the potential to put this challenge behind me.
Now some good news. This morning (Saturday) I called Theresa and she began crying. Why? My voice has begun to show signs its returning to normal. While there is still a long journey ahead, it is comforting to see God’s hand begin the healing process. If all goes well, I’ll be released Sunday or Monday.
Thank you for your continued prayers and support.
Tuesday, November 20, 2007
November 19 - 20 Update
From the view of my medical team, my body is responding well and as expected to the radiation and chemotherapy treatments. From my view, I had hopped I would feel good enough to put in a few hours of work today. It was a bit silly of me to think I would somehow be less affected by chemo than others are. Humility is good, but I can't help but be optimistic about my recovery! -)
The past two days I've fought nausea, loved the fact I have a feeding tube to maintain nutrition and hydration and slept almost all the time. Not sure I've ever felt this sleepy. I'm told these symptoms will persist for several more days.
I've started a draft summary of this journey... if I were a Hollywood writer, this would be known as a prequel to this blog. What started as a sore throat in December 2005 morphed into my current diagnosis of cancer in the base of my tongue. If all goes well, I'll post this overview in a day or so. I will take time to write a "shorter letter", which will enable you to come up to speed on my two year journey in a few short minutes.
Take care, and thank you for the support all of you are providing. I find your posts uplifting and a great reminder of the many remarkable people I've been blessed to develop friendships with over my lifetime.
The past two days I've fought nausea, loved the fact I have a feeding tube to maintain nutrition and hydration and slept almost all the time. Not sure I've ever felt this sleepy. I'm told these symptoms will persist for several more days.
I've started a draft summary of this journey... if I were a Hollywood writer, this would be known as a prequel to this blog. What started as a sore throat in December 2005 morphed into my current diagnosis of cancer in the base of my tongue. If all goes well, I'll post this overview in a day or so. I will take time to write a "shorter letter", which will enable you to come up to speed on my two year journey in a few short minutes.
Take care, and thank you for the support all of you are providing. I find your posts uplifting and a great reminder of the many remarkable people I've been blessed to develop friendships with over my lifetime.
Sunday, November 18, 2007
November 15 -16: Feeding Tube
This visit to the hospital is to have a feeding tube placed. The surgeon threads a tube down my esophagus to my stomach. There is a light at the end of the tube which allows the surgeon to see where to make an incision and pull the tube through the skin. The end result is a flexible tube that extends 6-8 inches out from a spot that is about three fingers below my rib cage and an inch to the left of the midline of by abdomen.
The surgery went smoothly. In the operating room, the surgeon asked me if I was ready for the anesthesia. I looked at him with a serious face and said, “I think I’d like to try this without being put to sleep.” He began to explain there are some surgeries he does without putting the patient to sleep, but he did not advise that with this procedure. I then told him I was just kidding. Later in the recovery room his nurse stopped by to say the surgeon is always playing jokes, but no one was ever able to get him. She said it was fun to see the tables turned on him for a change.
I’m really glad this feeding tube (aka PEG tube) was a recommended. While my stomach muscles near the incision have been sore for a few days, it beats the pain of eating. Now my meals are ingested via a large syringe to funnel water and liquid meals through the feeding tube into my stomach. It only takes 15 minutes to “eat” a meal… with no pain!
For well over a year, I’ve experienced pain whenever I eat, sometimes lasting for a few hours. As a result, I’ve eaten less and less over time. My weight loss started in May when I was 141 lbs. I then dropped to 136 lbs in July, 132 lbs in October and 125 lbs today.
My doctors say the radiation will result in an extremely sore throat that will make it difficult, if not impossible to swallow. This PEG tube will help me achieve required nutrient and caloric intake. This will be my new way of eating during the six-week cancer treatment and possibly well into 2008… again, a small price to pay to overcome the cancer.
The surgery went smoothly. In the operating room, the surgeon asked me if I was ready for the anesthesia. I looked at him with a serious face and said, “I think I’d like to try this without being put to sleep.” He began to explain there are some surgeries he does without putting the patient to sleep, but he did not advise that with this procedure. I then told him I was just kidding. Later in the recovery room his nurse stopped by to say the surgeon is always playing jokes, but no one was ever able to get him. She said it was fun to see the tables turned on him for a change.
I’m really glad this feeding tube (aka PEG tube) was a recommended. While my stomach muscles near the incision have been sore for a few days, it beats the pain of eating. Now my meals are ingested via a large syringe to funnel water and liquid meals through the feeding tube into my stomach. It only takes 15 minutes to “eat” a meal… with no pain!
For well over a year, I’ve experienced pain whenever I eat, sometimes lasting for a few hours. As a result, I’ve eaten less and less over time. My weight loss started in May when I was 141 lbs. I then dropped to 136 lbs in July, 132 lbs in October and 125 lbs today.
My doctors say the radiation will result in an extremely sore throat that will make it difficult, if not impossible to swallow. This PEG tube will help me achieve required nutrient and caloric intake. This will be my new way of eating during the six-week cancer treatment and possibly well into 2008… again, a small price to pay to overcome the cancer.
Sunday, Nov 18
I woke up this morning anxious to begin treatment. Radiation went better than I expected. The mesh mask that snaps tightly over my head, neck and upper chest creates pressure on my throat making it difficult to swallow. I have to mentally relax as it would be easy for me to panic as it feels like I could choke with each swallow. Unlike the radiation preparation sessions which were up to 45 minutes of being strapped in, the actual treatments are only 15 minutes long. That's a relief. To stay mentally calm during these sessions, I mediate on God's attributes.
After leaving the radiation facility, which is located adjacent to the hospital complex, I was admitted for my first round of chemotherapy treatment at NKC Hospital. I received several hours of fluids and anti-nausea drugs by IV before the chemo was administered. The chemo drug itself took only about one hour to flow into my body. No nausea -- yet!
Overall everything went smoothly today. The radiation mask triggers pain in the tumor area and intense headaches... a small price to pay for a cure.
I'm in a new single-bed hospital room with WI-FI access. In fact I'm creating this entry from my hospital bed just moments after the chemo treatment finished. If all goes well, I will be released sometime on Monday.
After leaving the radiation facility, which is located adjacent to the hospital complex, I was admitted for my first round of chemotherapy treatment at NKC Hospital. I received several hours of fluids and anti-nausea drugs by IV before the chemo was administered. The chemo drug itself took only about one hour to flow into my body. No nausea -- yet!
Overall everything went smoothly today. The radiation mask triggers pain in the tumor area and intense headaches... a small price to pay for a cure.
I'm in a new single-bed hospital room with WI-FI access. In fact I'm creating this entry from my hospital bed just moments after the chemo treatment finished. If all goes well, I will be released sometime on Monday.
Saturday, November 17, 2007
Treatment Schedule
The type and location of my cancer results in a high reliance on radiation treatment. The tumor is primarily located in the right side base of my tongue, but it does cross over the midline into the left side as well. This renders the tumor inoperable. It is not uncommon for tumors in the base of the tongue to be declared inoperable. The cancer has also spread to one lymph node in my neck.
The protocol is for six radiation treatments each week for six weeks. This will consist of daily treatments Monday through Thursday and two treatments each Friday. Chemotherapy is scheduled for day one and day 22 of the protocol.
I report at 8:45 AM Sunday morning November 18th for my first radiation treatment. Once radiation is complete, I will be admitted to NKC Hospital where the initial dose of chemotherapy will be administered. If all goes well I will be released sometime on Monday.
I know this will not be an easy journey, but I am excited to get this fight underway, grow from this experience and observe God's loving hand.
Theresa and I have been overwhelmed by the cards, emails, phone calls and home visits you have all given to provide us support. We deeply appreciate your prayers and thoughts.
The protocol is for six radiation treatments each week for six weeks. This will consist of daily treatments Monday through Thursday and two treatments each Friday. Chemotherapy is scheduled for day one and day 22 of the protocol.
I report at 8:45 AM Sunday morning November 18th for my first radiation treatment. Once radiation is complete, I will be admitted to NKC Hospital where the initial dose of chemotherapy will be administered. If all goes well I will be released sometime on Monday.
I know this will not be an easy journey, but I am excited to get this fight underway, grow from this experience and observe God's loving hand.
Theresa and I have been overwhelmed by the cards, emails, phone calls and home visits you have all given to provide us support. We deeply appreciate your prayers and thoughts.
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