| Pre-Treatment May 2001 |
Post Treatment December 2001 |
Post Treatment February 2002 |
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Radiation is complete, surgery a distant memory. The first two weeks post-radiation were very tough. Another bout with nausea and vomiting meant another trip to the emergency room. During that visit we discovered that Mike is allergic to a prescription medication they used to help control the nausea (Phenergan). The side effects, massive, involuntary muscle twitches, lasted 12 hours – even after two doses of Benadryl.
By the third week post-radiation, Mike was feeling much more like himself. His prosthesis was adjusted and he can now wear it full time again. His neck, outside, was extremely raw. We found that an antibiotic ointment worked about the best. At this point we couldn’t use the radia-care gel because it actually worsened the pain. We discovered upon talking to a pharmacist, that radiation burns are classified as chemical burns. We opted to use an antibiotic ointment with some anesthetic properties.
5 Months Post Surgery, 2 Months Post Radiation
Issues & Problems at 2 months Post Radiation
PAIN: None
SALIVA: Reduced, but better than expected
TASTE: Almost non-existent, hoping it will improve
WEAKNESS: Left side is weaker, hope to increase
WEIGHT: Still need to gain at least 15 pounds
FATIGUE: Still takes more naps than he would like
At eight weeks post radiation, taste and saliva remain the biggest issues. Water is now a real necessity anytime we go out. The feeding tube (PEG ), is still the main source of nutrition. While most foods can be eaten, there is not much motivation when there is so little taste. Having lost about twenty pounds since surgery/radiation, the current struggle is with gaining weight.
7 Months Post Surgery, 4 Months Post Radiation
Well, we’re now 7 months post-op and 4 months post radiation. Things have continued to improve. Mike has more saliva than expected, although still not enough to eat any type of bread or cracker (things he really misses). Most food is eaten with a lot of gravy or sauce, although cheese sauces tend to thicken and thus don’t work.
The feeding tube (PEG) was removed in February and eating by mouth has become a priority. As we expected, the PEG removal precipitated more weight loss. We are working on this by adding high-calorie shakes and smoothies into the Medifast diet (1-2 daily). We feel that once Mike’s weight is closer to normal, it will be easier to maintain. Weakness can only improve after weight is stabilized but fatigue is much better. An occasional nap is taken, but it’s rare.
Issues & Problems at 4 months Post Radiation
SALIVA: Reduced, but better than at 2 months
TASTE: Almost normal but decreases as bites are eaten
WEAKNESS: Left side is weaker, hope to increase
WEIGHT: Still need to gain at least 15 pounds
FATIGUE: Definitely improving but not at pre-surgery level
Saliva and taste are both improved since the last report. While a water bottle is a pre-requisite for leaving the house, Mike no longer wakes up parched every night. Taste is at almost pre-treatment levels, at least the first few bites. Taste seems to decrease as he eats each meal but we hope this will continue to improve.
The best news came at the last visit to the ENT oncologist. A CT scan was done, the first since radiation, and all is clear! We’re feeling very confident that checkups will continue to be good and will keep this journal updated.
Mike’s favorite saying has become, “Every day is a gift” and we try to live our lives that way.