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Monday, May 31, 2010

Adenoid Cystic Carcinoma in the news

1. A touching story about how the Santaquin (Utah) community has come to the aid of one of their own that is newly diagnosed with ACC: Community Rallies Around Santaquin Mom With Rare Cancer Amy Jackson, you are in my thoughts. Thank you for all you do and have done, and kudos to your community for stepping up and letting you know how you have touched their lives.

2. Sad news that the former chair of medicine at Stanford School of Medicine, chair emeritus Edward D. "Ted" Harris Jr., MD, died at the age of 73 on May 21 after fighting with ACC. Dr. Harris' research centered in rheumatology, particularly rheumatoid arthritis. My grateful thanks to his family for asking that memorial contributions to be made also to the Adenoid Cystic Carcinoma Research Foundation - the research done in his name on this cancer may change almost as many lives as his long medical research and education career did.

Sunday, May 30, 2010

Update on the nose situation

I visited an ENT fellow (who is just about finished with his residency, and will be heading out very soon to begin his professional practice) on Friday, and got the lowdown on how my nose is doing (re: sinus rinsing resulted in hours, nearly days later whooshes of water spraying out of my nose). After getting up close and personal with a camera up into my sinuses, he pronounced me fine and dandy in that area of my anatomy. In fact, he said, if he didn't know that I had had radiation to the head, he knew of many people that would like to have sinuses like mine (so now I know that radiation cures sinus problems, and acne - go figure). Evidently, radiation causes the tissue to shrink, so I have caverns up there, compared to some folks that have cramped sinuses. The only bad part - my caverns still have the little bitty openings that most folks have, so the water that goes up there stays until something (never did find the right movements to do it on cue) brings it back down the nose. I figure if I get into the rinsing habit, it may be something I will reserve just for Friday and Saturday night, something like how I used to govern alcohol imbibing (relax - remember, I don't do that anymore). He said that I needed to keep my nose like a dog's - wet. He suggested saline nasal spray, drink lots of fluids, and some sort of ointment (vaseline, bacitracin, whatever), and see if that takes care of things. I thanked him for new coping tools, and danced out of there, glad that he didn't find anything else (well, there was a mention of a crooked septum, but I am not at all seeking elective surgery - had enough of the other sort, thanks.) I also checked with Lucky the Dog when I got home to see what he recommended, but he hasn't gotten back to me yet.
So, back on the straight and narrow, with only a few more hospital bills to pay than I thought there would be before my head/neck MRI in late July before I see the head/neck guys again in August.

Tuesday, May 25, 2010

How to manage your death portfolio

from CNBC: How to manage your death portfolio

I like their description of a "family love letter".

Thursday, May 20, 2010

Another network "Stand up to cancer" planned for this fall

from the NYT: . Question: does anyone know how much money was raised and what was done with it from the first Stand Up To Cancer in 2008? That would be useful knowledge.
(By the way - not sure if I will be posting to NYT articles in the future - I have heard that they will start charging for their online content. Too bad.)

Monday, May 17, 2010

Do not read this while eating or preparing to eat

Yeah, I thought that would get your attention. I visited the head/neck guys last Tuesday, asking about the increasing headache, some more tinnitus, and wondering why I have bloody mucus in my nose. No new offering for the headache - heck, for $120,000 (roughly), I should be enjoying the headache all the money brought me. (Joking, of course - sometimes pain means we are alive, and should be grateful.) I should go get a hearing test for the tinnitus. The nose issue caused more attention. They recommended that I use a 'sinus rinse' aka nasal wash (now referred to in our household as nose enema or nasal douche) twice a day for the next month, along with an antibiotic ointment skillfully placed with a cotton swab. When I picked up the ointment from the pharmacy, the pharmacist was careful to tell me to use a new cotton swab for each side of the nose, and to 'just coat the nostril, don't put a lot in, like your mom did with vaporub". I really like directions like those.
Rinsing your sinuses/douching your nasal cavity/giving your nose an enema involves some preparation. I have opted for the home route -mixing my own salt/baking soda solution in distilled water (but I am probably going to move towards the premixed packets very soon.) I fill up a squeeze bottle with the mixture, set the bottle in a glass of warm water to warm it up a bit, then put the bottle tip to one nostril and squeeze gently, feeling the water swirl around in my head before it finally exits out the other nostril like a clear river (oh yeah, did I say I was standing at the sink while all this is going on?). I am up to doing about half the bottle for one side, then stop to blow gently ( bunch of blood clots come out about this time), then I gear up and do the other side with the remainder of the bottle, blowing out the blood clots after the water drips ease up. I tried a neti pot, but simple gravity doesn't seem to get the water up into my nose - it just stayed in the pot - so I went back to the squeeze bottle. The really weird thing - 4 to 8 hours later, water just suddenly spurts out of my nose. Exactly where has it been lurking, that is what I would like to know! Even after doing toe-touches and every other thing I can think of to get my head down and in various directions (within my since-2006 restricted head movements, that is), the water still suddenly appears later. I am going to turn into that little old librarian with a tissue tucked up in her sleeve after all, I can just tell! I figure my coworkers probably just think I have picked up a coke habit...
Let me know if you have advice for a new 'nasal washer', or if you have your own experiences you want to recount here.

Sunday, May 02, 2010

Thanks to BP, the second part of our anniversary has changed

Well folks - who would have known what today's Gulf of Mexico would look like when I booked a condo in Gulf Shores, AL way back in January. We were heading down to take romantic walks on the beach, eat some great Royal Reds (shrimp, HUGE shrimp), and just sit and have the sea breezes waft over us. Not happening. The mister was in a Gulf back in 1991 with burning oil - taking him to an area that has been declared an emergency due to oil again probably wouldn't be the best memory maker for our next 25 years. I figure this is similar to planning a trip to California, and having to cancel it due to forest fires. I am so so very sorry that the wildlife and human life will be experiencing the trouble they are about to (or are already) have thrown at them, but the Cheekymobile won't be driving down to the ocean any time soon. Not sure what we will do instead. I had also hoped this trip would boost me up before my unexpected head/neck doctor visit in mid-May (I know, too much for one small trip to shoulder, anyway), but will face them beach-less.
Where ever you are, I hope your travel plans are holding up and you get to make some memories no matter what. I have the feeling that memories are something we CAN take with us.
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