The NEW Beginning

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The Head and Neck Cancer site is a labor of love. Cancer first reared it's head (just the tip of the iceberg, so to speak) in January of 2001 when Michael, my husband, noticed a lump on the left side of his neck. Here is a chronicle of our "adventures".

Winter 2001 - The Beginning
Spring 2001 - The Discovery
Summer 2001 - The Surgery
Fall 2001 - The Radiation
Winter 2002 - The New Beginning
Spring/Summer 2002 - The First Anniversary
Fall 2003/Winter 2004 - The Continuation
Spring/Summer 2004 - The Highs & The Lows
Fall 2004 - The End  11/30/04

Pre-Treatment
Mike prior to surgery and radiation, May 2001
May 2001
Post-Treatment
Mike 2 months after radiation, 5 months after surgery, Dec 2001
December 2001
Post-Treatment
Mike 5 months after radiation, 8 months after surgery, Feb 2002
February 2002
[click photos for larger view]

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
SALIVA
TASTE
WEAKNESS
WEIGHT
FATIGUE

None
Reduced, but better than expected
Almost non-existent, hoping it will improve
Left side is weaker, hope to increase
Still need to gain at least 15 pounds
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 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

PAIN
SALIVA
TASTE
WEAKNESS
WEIGHT
FATIGUE

None
Reduced, but better than at 2 months
Almost normal but decreases as bites are eaten
Left side is weaker, hope to increase
Still need to gain at least 15 pounds
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.

NEXT:  Spring/Summer 2002 - The First Anniversary  


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