On Thursday, May 15, we learned the long awaited results of my first PET scan since November. The results were just shy of perfect. A radiation oncologist who has not been involved in my treatment read the scan to avoid any potential bias. This oncologist thought the main tumor in the base of my tongue had been surgically removed. It was that gone! The lymph node has calcified and no cancer is present there either. This lump continues to shrink as my body slowly removes the dead remnants.
The PET scan revealed slight and scattered hot spots on the floor of my mouth which keep the results from being perfect. My oncologist said it is rare for cancer to spread there. It is probable these tiny hot spots are a result of me swallowing during the PET scan. Any muscle that is active during the scan will consume the glucose put into my veins. I recall swallowing hard multiple times during the scan. As a precaution, I will have another PET scan in August. In the meantime, I’m considering myself cancer free!
As my appointment came to an end, two nurses who have been helping me since the beginning of this journey asked if Theresa and I would participate in Relay for Life, a fund raiser for the American Cancer Society. Specifically, they asked if Soul Focus, the band formed by American Century Investments employees, would perform. I will include information on this blog, if the band is able to play at the July 18th event scheduled for Oak Grove Park in Gladstone, Missouri. The nurses hope my participation will be an encouragement to others fighting cancer. Another band member was diagnosed with cancer about two years ago. If all goes well there will be two cancer survivors performing as examples of God’s grace and the importance of fulfilling ones doctor’s protocol.
I had hoped to gain approval from my oncologist to begin Vital Stim, which is a procedure to trigger contraction of my tongue and swallowing muscles. While my esophagus is now wide enough for soft foods, my swallowing muscles are not effective at moving the food from the base of my tongue to the esophageal opening. My speech therapist has provided me a full compliment of exercises to strengthen these muscles, but the progress is very slow. Vital Stim is used to accelerate the rehabilitation process. However, there have been reports of Vital Stim triggering growth of cancer in the head and neck, if its used too soon after radiation. My oncologist, who is appropriately conservative, will approve use of this treatment when I have a PET scan that leaves no doubt the cancer is gone. The tiny hot spots on the floor of my mouth were enough to sway his decision against approving this treatment.
On Friday, I had my fourth in a series of EGD procedures. You may recall my esophagus was opened to 14mm two weeks ago. This time the doctor was able to advance it to 15mm. I will have my fifth procedure in about a month. In the meantime, I’ll keep working my swallowing muscles and pray my salivary glands and tongue mobility continue to improve. Thank you again for your letters, emails, support and prayers. You are making a difference in my life.
Sunday, May 18, 2008
Saturday, May 10, 2008
The New Normal
Over the past few weeks, I’ve reflected on how my daily routine and tasks have changed. I’m adapting to my “new normal.” On one hand, I’ve returned to many of the activities that filled my life before cancer – church, work, music and most importantly I’m able to provide my family emotional support and guidance again. On the other hand, there are many physical and emotional changes. Some of which may never be the same, but it doesn’t seem matter. The important parts of life are in place. Before I fall asleep each night, I thank God for one more day of life on this earth.
The physical changes range from the humorous to frustrating. My feeding tube has created a few laughs for me recently. While “eating” lunch in my office at work, the tube slipped out of my hand as I attempted to close it. After a few seconds of liquid spewing from the wiggling tube, I was able to get control and stop it. I just sat there and laughed at the thought of what just happened. This is one part of the “new normal” that shouldn’t last too much longer. On the frustrating side is my speech. While its getting better, I find my tongue gets tired when I engage in a conversation with someone at work. My mind is zipping along, while my tuckered out tongue is begging me to stop talking. Maybe forcing myself to be more concise in my communication will not be a bad thing. ;-)
There are many more examples of how my daily routines have changed, but I won’t detail them all here. The bottom line is my shift in mental attitude. I’ve moved from “I can’t wait to return to normal” to “accepting that normal will be different going forward.” I will continue to strive for improvement, but I realize that one can get along pretty well in life without all of the body functions most of us think of as normal.
On May 2nd, I had my third EDG procedure. It went better than expected. My esophagus did not narrow as it did after the first procedure. The doctor was able to open my throat to 14mm. The goal is 18-20mm. After my fourth procedure, which is scheduled for May 16th, the GI doctor told me it will be up to me to let him know if or when another procedure is required.
While my esophagus is now wide enough for me to eat soft foods, I’ve found my swallowing muscles are not efficient at moving the food between the base of my tongue to the esophagus. The one meal I eat each day by mouth has become an exercise to strengthen my swallowing muscles. Since my salivary glands are still not up to par, I also use water to help wash down the soft food. I view this as another positive step towards the “new normal.”
On May 8th, I had a PET scan, which is a reliable test to spot cancer in the body. I expect to learn the results when I meet with my oncologist May 15th. The first step in this test is to have glucose injected into your veins. Then after a 30 minute wait to allow circulation of glucose throughout the body, you lie down on a narrow table. This table moves you through a large cylinder that scans the body and provides an x-ray like picture of the body. Because cancer cells are metabolically very active, they consume the glucose and show up as hot spots on the PET scan. Here’s to a hot spot free PET scan result next week!
My apologies for the long delay between blog posts. I’ve heard from several of you wondering if everything is okay. To be honest, my work schedule has resulted in me being fatigued in the evenings and I’ve gotten lazy with my updates. I intend to provide another update next weekend after I learn the results of my PET scan. Until then, take care.
The physical changes range from the humorous to frustrating. My feeding tube has created a few laughs for me recently. While “eating” lunch in my office at work, the tube slipped out of my hand as I attempted to close it. After a few seconds of liquid spewing from the wiggling tube, I was able to get control and stop it. I just sat there and laughed at the thought of what just happened. This is one part of the “new normal” that shouldn’t last too much longer. On the frustrating side is my speech. While its getting better, I find my tongue gets tired when I engage in a conversation with someone at work. My mind is zipping along, while my tuckered out tongue is begging me to stop talking. Maybe forcing myself to be more concise in my communication will not be a bad thing. ;-)
There are many more examples of how my daily routines have changed, but I won’t detail them all here. The bottom line is my shift in mental attitude. I’ve moved from “I can’t wait to return to normal” to “accepting that normal will be different going forward.” I will continue to strive for improvement, but I realize that one can get along pretty well in life without all of the body functions most of us think of as normal.
On May 2nd, I had my third EDG procedure. It went better than expected. My esophagus did not narrow as it did after the first procedure. The doctor was able to open my throat to 14mm. The goal is 18-20mm. After my fourth procedure, which is scheduled for May 16th, the GI doctor told me it will be up to me to let him know if or when another procedure is required.
While my esophagus is now wide enough for me to eat soft foods, I’ve found my swallowing muscles are not efficient at moving the food between the base of my tongue to the esophagus. The one meal I eat each day by mouth has become an exercise to strengthen my swallowing muscles. Since my salivary glands are still not up to par, I also use water to help wash down the soft food. I view this as another positive step towards the “new normal.”
On May 8th, I had a PET scan, which is a reliable test to spot cancer in the body. I expect to learn the results when I meet with my oncologist May 15th. The first step in this test is to have glucose injected into your veins. Then after a 30 minute wait to allow circulation of glucose throughout the body, you lie down on a narrow table. This table moves you through a large cylinder that scans the body and provides an x-ray like picture of the body. Because cancer cells are metabolically very active, they consume the glucose and show up as hot spots on the PET scan. Here’s to a hot spot free PET scan result next week!
My apologies for the long delay between blog posts. I’ve heard from several of you wondering if everything is okay. To be honest, my work schedule has resulted in me being fatigued in the evenings and I’ve gotten lazy with my updates. I intend to provide another update next weekend after I learn the results of my PET scan. Until then, take care.
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