During the summer, I’ve made slow, but steady progress in my return to good health. I’m feeling stronger and I now only require 8.5 – 9 hours of sleep each evening. I continue to treasure every moment of every day, and the normal stresses of work and life don’t wear on me as they once did.
Last week I had a follow up PET scan to the one I had in May. This scan would both determine if cancer was present and if I could begin vital stem therapy. There was one area on the floor of my mouth that showed a low level of metabolic activity. However, the doctors and radiologist were not concerned, as it appeared to be a result of ongoing healing, not cancer. Yippee! There will be a follow up PET scan later this year, but it has not been scheduled.
On August 25th, I will begin vital stim therapy. This process involves the placement of electrodes on my neck. I will then be asked to drink fluids and swallow various types of food. The electrodes will send a stimulus through my swallowing muscles both strengthening and retraining them. I will receive this therapy four times a week for several weeks. While my ability to swallow has improved over the summer, it is still weak. Hopefully this therapy will drive the desired results.
Over the past several weeks, I’ve really pushed ahead with eating more food by mouth. Through the spring when I was exclusively using my feeding tube, I took in about 6 cans a day, or 42 cans of liquid food each week. This past week, I only had 6 cans through my tube and the rest was replaced by “regular” eating. Soft, moist foods work best like pasta, mashed potatoes and well-cooked vegetables. Water is my best friend, as the food does not clear my mouth fully when I swallow. Even though it takes 30-45 minutes to eat a meal that normally would take 10-15 minutes, it is such a joy to taste food again. And, yes, my taste has returned, which was no guarantee.
In addition to strengthening and retraining my swallowing muscles with vital stim, my esophagus still needs to be opened further. I have another EGD to dilate my esophagus August 19th. I’m approaching the point where the esophageal opening is considered functional, but it is still at about half the size of what is considered normal. I anticipate more EGD procedures through the fall.
If all goes well with vital stim therapy, I hope to have my PEG tube removed in late September or early October. The PEG tube is a rubbery plastic tube that is a little over a foot long with the diameter about the size of a pencil. It is positioned about three inches above my belly button. While it has clearly been a lifesaver, I’m looking forward to having it removed. I’ve had it since mid-November of 2007. If I can maintain, or gain weight for four weeks while eating by mouth, the doctors will approve its removal.
Thanks again for your support and your prayers. I’m getting closer to finishing my rehabilitation.
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2 comments:
It is wonderful to hear that you continue to recover and regain some of those daily activities that we (sadly) take for granted. You continue to be an inspiration!
Dave - I caught up with Julie Johnson by phone today. It was the first I had heard of your condition and recovery. It is clear from your blog that you have faced this challenge with the same intensity, focus and positive outlook with which you seem to tackle all challenges. I'm really glad to see that you are making such huge strides.
Trust that you are in my prayers and that I wish you nothing but healing and good will. Take care.
Paul Inman
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