adenoid-cystic (a.c.c.) starting in the maxilla

[kathyh]

I'm 67 years old and at the point where what I most want to know is what happens next? So I thought writing my story as far as it goes would be a good place to start. My cancer was found in late 1998 when a sore on the roof of my mouth would not heal. Robert Ord, my doctor at the University of Maryland Medical System, recommended a conservative approach- debulking and radiation- since clean margins would have meant radical surgery and the loss of at least one eye among other things. He made it clear there would be a return within 5-15 years. I took his advice and have not regretted it. The only operative site after removal of a bit more than half my maxilla was covered by a dental plate.

With the exception of mouth and obturator care, I have had good health and few problems up to fairly recently. The gremlin, as I have come to call it, reappeared in 2004, when some more debulking at the original site was required, and then showed signs in early 2005 of going on a jaunt along the cranial nerves. The outcome is that the right side of my face is on a permanent vacation: double vision at first and then eventual blindness in that eye, the lid cannot open on its own, loss of tearing, facial and scalp numbness and loss of hearing (though that could be caused by the tumor covering my eustachian tube). The main settlement was the original site; so both nostrils and sinuses are pretty full, giving me that jimmy durante look and- the biggest insult of all- removing my sense of taste. I mean I live to eat! I have a permanent tube in my left ear drum to do the work of the eustachian tube on that side.

Other issues and problems: I am up to 30mgm of long acting morphine twice a day, and senna plus back-up troops to cover the G.I. impact; not fun as that part of my anatomy has not been very cooperative my whole life. The pain source is mainly my jaws and temples; very selfish about space, mr. gremlin is pressing down on the plate thus forcing it out to the sides and back into my throat. Through a series of events whose script length could rival 'War and Peace', I've ended up with my original temporary dental plate which cannot stand up to chewing. So I remove it to eat, at home or in public. Because we retired back to upstate New York, my medical personnel have seen even less A.C.C. than those in Baltimore; but they have done their best. They supported my turning to hospice when I lost my sense of taste in early 2009: the quality of life issue for me! The nurse who interviewed me suggested we try a steroid to reduce the swelling and inflammation; bless her heart, she gave me 9 months more of taste. Unfortunately the steroid hastened the growth of my cataract. I think alendronate, medication to strengthen bones in older women, was a major contributor as well and tell everyone I can about my suspicion. At the moment I am scheduled for eye surgery on Nov 4. Another issue: what to tell people and when? it's such a slow moving cancer I fear loved ones will grow weary and wander away. After all, i did not expect to see the last 2 Christmases and was sort of hoping to avoid writing all those cards this year. Last but not least, since the unwelcome guest resides in my head, thus involving teeth and eyes, I have fights galore about medical costs in spite of having Medicare and my federal retirement health insurance. Have others been there??

Folks have begun to voice possibilities for what could happen next. A stroke for one or bleeding from an unreachable part of my head. My nostrils drip almost constantly with contents ranging from clear to blood tinged to frank blood. And my left arm and hand frequently 'fall asleep', that sensation when you've laid on them during the night. So these things seem feasible. And I admit to losing more and more interest in eating. Things get boring when you can't really taste and wine has the excitement of cough medicine.

But I have read several stories on this web site and realize I have had an easy time of it in comparison. Things have happened in the time frame expected. I have very supportive friends and family, great hospice and other medical staff. I've had the wind at my back for most of my life. I have done most of what I wanted to or could do and have all my papers and arrangements in order (that was activity that helped give me a sense of control when the first biopsy and radiology reports were coming in). So I feel good and have few regrets. What i most want to do is keep being active and helpful as long as I can and answer as best I can, for myself and others, the original question: what happens next?