Its been a while since I’ve posted an entry. Since I had my first EDG procedure (this is the abbreviated name for the throat stretching), my life became much busier than before. I began driving into work, logging about 20 hours a week. Additionally, I started speech therapy twice a week. All of these new activities resulted in more fatigue that I like to admit. As many of you know, I’ve been very active my entire life running nearly every day. So, its hard for me to come to grips with the fact that I tire by doing activities I don’t consider exercise.
Speech therapy has been challenging. Returning my tongue to normal movement is going to take effort and time. Back in January, I was not able to protrude my tongue beyond my lips. Now, I can extend it almost an inch. However, the tip of the tongue still does not move well to the right. Over the past two weeks, I’ve been able to advance the tip from moving as far as the midpoint to now about ¼ inch past the midline. It is a bizarre feeling to tell a muscle in your body to do something and not have it respond. My speech therapist encourages me to be patient. I continue to do these exercises daily so I will be able to use my tongue to speak clearly, move food in my mouth and play my trumpet with accuracy.
On Friday, I had my second EDG procedure. My esophagus, which was opened from 1 mm to 10 mm in the initial procedure, had closed to about 3.5 mm. While this was expected, I was surprised as I did not notice much difference in my ability to swallow during the past two weeks. Because the opening was initially so small, it may have narrowed significantly within a day of the first procedure. The GI doctor was able to open my esophagus to 11 mm this time. The goal is 18-20 mm.
I’m beginning to accept the fact I may have my feeding tube for quite some time. Over the past few weeks, I’ve replaced one of my tube feedings each day with a meal by mouth. Smoothies, creamy soups and jell-o have been my foods of choice. They say pastas will be in my diet by summertime. I will return in about three weeks for another EDG procedure.
I also had a visit to my ENT physician since my last post. It was a very positive visit, and he was pleased with my progress. Based on his examination of the lump in my lymph node, he decided taking a second sample to check for cancer will not be necessary. The lump is continuing to shrink. The next test to validate the cancer is gone will be a full body PET scan the first week of May. I meet with my oncologist May 15 to learn the results.
Thank you again for all of your support. Your prayers, Bible verses, letters, emails and blog posts encourage me when I’m frustrated or tired. You are helping my recovery. Every single communication I receive brings joy to my heart. Thank you for your friendship.
Sunday, April 20, 2008
Thursday, April 3, 2008
Only a millimeter?
In my last post, I talked about the possibility this would be a pivotal week. This week has been filled with good news and several changes that will lead me toward a more normal life.
On Tuesday, I had outpatient surgery to stretch my throat. The procedure was done with a fluoroscope. This allowed the surgeon to watch a live x-ray on a monitor as he operated. As I waited on the operating table I described for the surgeon my experience with swallowing. As I did this he turned to the nurse and requested she retrieve the infant instruments. After surgery, I learned why. The diameter of my esophagus was only one millimeter wide. Yes, about the size of a pen tip. He was able to open it to a diameter of ten millimeters. To eat solid food, additional surgeries will be required to achieve a width of 18 – 20 millimeters. For now, I am able to drink smoothies and eat food up to the consistency of apple sauce. I intend to replace one of my daily tube feedings with a smoothie or soup eaten by mouth.
Learning the remarkably small opening at the top of my esophagus explains what I’ve experienced since I began sipping fluids in late February. If I sipped too much water, I would have to wait until a gurgling sound and minor discomfort stopped. On one occasion, I was sipping some chicken broth made from Campbell’s Chicken and Stars soup. I tried to chew and swallow a single piece of rice. I could not swallow it, which now makes sense given the narrow opening of my esophagus.
I am told I will have multiple procedures to normalize my esophagus. The procedure, which only takes ten to fifteen minutes, uses an instrument to mechanically stretch the scar tissue from the radiation. Between procedures, the esophagus will narrow slightly. The narrowing lessens over time, and in many patients stops. In others, the narrowing continues and the procedure must be performed one or two times a year to maintain the normal esophageal opening. I don't think Theresa will mind If I have this done often. She gets a kick out of my anesthesia induced jovial behavior after I wake up from the procedure. ;-)
On Thursday, I had an appointment with my radiation oncologist. He was very pleased with my progress. The lymph node continues to shrink, and his examination led him to say there is nothing he found to concern him. He schedule me for a PET scan in early May. This test will scan my entire body for cancer, and I hope will be another validation my treatment was successful. Additionally, he recommended me for speech therapy to advance the mobility of my tongue.
Finally, we discussed my return to work. I had hoped to gain approval to work 30 hours a week, but received his support for up to 20 hours a week. This is probably best. On the few occasions I have ventured out for more than a couple of hours, I’ve found I tire quickly. So beginning next week, I will travel into work on most days, instead of working from home. This is one more step in my journey to return to a more normal life.
On Tuesday, I had outpatient surgery to stretch my throat. The procedure was done with a fluoroscope. This allowed the surgeon to watch a live x-ray on a monitor as he operated. As I waited on the operating table I described for the surgeon my experience with swallowing. As I did this he turned to the nurse and requested she retrieve the infant instruments. After surgery, I learned why. The diameter of my esophagus was only one millimeter wide. Yes, about the size of a pen tip. He was able to open it to a diameter of ten millimeters. To eat solid food, additional surgeries will be required to achieve a width of 18 – 20 millimeters. For now, I am able to drink smoothies and eat food up to the consistency of apple sauce. I intend to replace one of my daily tube feedings with a smoothie or soup eaten by mouth.
Learning the remarkably small opening at the top of my esophagus explains what I’ve experienced since I began sipping fluids in late February. If I sipped too much water, I would have to wait until a gurgling sound and minor discomfort stopped. On one occasion, I was sipping some chicken broth made from Campbell’s Chicken and Stars soup. I tried to chew and swallow a single piece of rice. I could not swallow it, which now makes sense given the narrow opening of my esophagus.
I am told I will have multiple procedures to normalize my esophagus. The procedure, which only takes ten to fifteen minutes, uses an instrument to mechanically stretch the scar tissue from the radiation. Between procedures, the esophagus will narrow slightly. The narrowing lessens over time, and in many patients stops. In others, the narrowing continues and the procedure must be performed one or two times a year to maintain the normal esophageal opening. I don't think Theresa will mind If I have this done often. She gets a kick out of my anesthesia induced jovial behavior after I wake up from the procedure. ;-)
On Thursday, I had an appointment with my radiation oncologist. He was very pleased with my progress. The lymph node continues to shrink, and his examination led him to say there is nothing he found to concern him. He schedule me for a PET scan in early May. This test will scan my entire body for cancer, and I hope will be another validation my treatment was successful. Additionally, he recommended me for speech therapy to advance the mobility of my tongue.
Finally, we discussed my return to work. I had hoped to gain approval to work 30 hours a week, but received his support for up to 20 hours a week. This is probably best. On the few occasions I have ventured out for more than a couple of hours, I’ve found I tire quickly. So beginning next week, I will travel into work on most days, instead of working from home. This is one more step in my journey to return to a more normal life.
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