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Thursday, January 28, 2010

A mom with a child newly diagnosed with ACC needs your support

Sara posted a comment on one of my recent messages, and I include it here in case you missed it:

I just started a blog for myself. My son was diagnosed with ACC this week. I am struggling with sleeping and eating. I dont know what to do. We are waiting to hear from the doctor my son was assigned to at St. Jude, hopefully tomorrow. I would love to hear from anyone that knows about ACC or someone that wants to vent with me. We have a Caring Bridge site.
Thank you for listening.

Cheekylibrarian, here - if you have any words of support for this mom, her email address is on the caring bridge blog, or you can leave comments on the blogspot blog. Please let her know she isn't alone. If you happen to be someone that survived having ACC as a kid, or have been the caregiver for a young person with ACC, I know you have unique information that you can share with her. Sending you the best, Sara - you are not alone in this.
PS - (added 2/5/10) Jacob's aunt also has a blog, and posted it in the comments to this message - bringing it up to the front for you:

Adenoid Cystic Carcinoma in the news

A story from Bluefield, West Virginia about Lisa Poole, who was diagnosed with ACC in 2004:
Battle of a lifetime: Poole says don't give up after cancer diagnosis
Lisa knows personally how cancer can wreck your life - her ACC has returned, despite the inital radical surgery that (if I read the story correctly) removed her ability to speak. I really like her advice: "Scream, shout, then calm down, take a deep breath, and prepare for the battle of your life."
Lisa, keep urging others along, and I will cheer you on from here. We are in the battle together.

If you or a loved one is newly diagnosed with adenoid cystic carcinoma

I am glad that you found this blog, but sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best actions you can take at this time, since you need to concentrate on getting healed up and staying strong. Please contact your local library that serves consumer health information, and have them do the searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus: Since this is a rare condition, finding out others' experiences may not be the best method for you to plot your own treatment path - in other words, you shouldn't be looking up your own crud on the internet at this time. Really. I used our Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. Of course, once I was out of active treatment, you bet that I traveled the web and added my voice to encourage others on this path, and still do so.
If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - scroll down the page and you will find the posts.
If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.
No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion.

Saturday, January 23, 2010

Adenoid Cystic Carcinoma in the news

Cancer is wicked. Having been diagnosed with cancer, I have kept hope that maybe I will be the only one in my family to have to go through this stuff, but that may not be the case. I now know of two moms that are not only battling their own cancer, but also that of their children.
Unfortunately, there are probably many more, but I found these amazing women by looking up ACC in the news.

The latest is Julie Duttine, and her son Jaden. If you are anywhere near South Hills (Pleasant Hills, PA, I think) on February 13th, please get some tickets for the show "'Til Death Do Us Part", the latest in the Late Night Catechism national shows. I think the take on both the matinee and the evening performances will go to the Duttines to TRY to offset the cancer treatment costs. Here is a link to the pdf of the order form, and here is a link to more on the Duttines, halfway down the page under "Catch the catechism". Julie also writes a blog, and posts updates on Jaden here: . I will add her blog to the blog roll on the right side of this page. I wish for them standing room only crowds.

The other momma that is dealing with not only her ACC but her child's cancer is Sherry Rogers The great news on her blog is that her son's and her latest scans are looking good! Thank goodness, and I wish for them all a very boring and love-filled spring ahead.

Friday, January 15, 2010

A visit to the dietitian

I met with the dietitian that is a partner in my family medicine clinic, and got re-schooled on what a nutritional diet for a non-tasting person should look like. The dietitian took the food preferences I currently have (which are pretty good, overall) and put them into a food exchange set-up, so I can keep better track of what I am ingesting. I have also started recording what I eat on FitDay, a free online food diary site: None of this is earth-shattering - I just needed to be reminded to increase my protein intake (had stopped doing the protein shakes before the holidays, and my energy level has suffered) and that even vegetables have calories (what?!? how rude!), and one cannot make a meal of nuts and berries every day without compensating for lower calorie options along the way. As I told a friend, even cows get fat on grass...

Friday, January 08, 2010

Sun dogs and Nebraska weather stats

Since most of our days are being taken up by the weather in some form here in Nebraska, I thought you might be interested in some trivia. It isn't supposed to get even to zero degrees F today, but that isn't the coldest maximum on record at this site:

I also thought you would like to see the sun dogs that escorted us home last night.

Thursday, January 07, 2010

This guy writes what I feel about having no taste

Roger Ebert blogs about his inability to eat, and what he really misses about it:
Nil by mouth

I started crying when I got to this part, because it is what I miss the most, too:
"What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They're the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That's what I miss."

I attended one business dinner last summer when I couldn't speak as well as not eat - I won't ever do that again if I can help it.

Heard about the Special K Challenge? Be on the show!

Saw this call, and thought someone out there between the ages of 25 and 40 might be interested:

Monday, January 04, 2010

Welcoming 2010 with memory problems

Can't blame it on too much holiday cheer - no alcohol for quite a while. I refuse to go to "oh no, a brain tumor" - other biological things are in play that act on memory. Such as:
1. My thyroid has been low, it turns out, so my primary care doc is working to get me level again. Thyroid disease acts on memory.
2. Stress acts on memory, and we have been experiencing some run-of-the-mill type of stress that follows both adult kids living at home and all of us held captive by sub-zero temps.
3. I am of a certain age - pushing 50 doesn't mean I am elderly (unless I was born near the turn of the 20th century), but the brain has gone through a lot.
4. Disturbed sleep patterns act on memory - due to any of the above, my sleep has been poor over the past couple of months.
I feel like I am in a constant state of deja vu, feeling that I have already done something that sounds like a good thing to do or something that I need to get done by a certain time (bill paying, sending birthday cards, emailing thanks to someone for the difference they have made in my life), when I am probably experiencing the echo of the original thought. To cope, I have lists (and I am NOT a list person), with dates/times/other clues showing that I have done the deed that I need to do. The alternatives are that either the thing doesn't get done, since my swiss cheese brain thinks I have already done it (pretty bad that I can't trust my brain these days), or I do it twice (making my semi-duplicate initial messages to an old friend Facebook seem like a stalker, or resulting in co-workers getting multiple happy birthday wishes, which is happening to those born in January). Let's just say that I won't be applying for Jeopardy any time soon. And I rein in any comments or offering of facts when in groups - not sure if a) it has been said already, and/or b)I have the correct fact in hand. Since my professional day is spent verifying facts, my job performance is doing ok (as long as I follow the lists), but I couldn't play Trivial Pursuit right now if a set of synthetic taste-buds was the prize. The thing I noticed today was that I couldn't record entire telephone numbers - had to look up and record 18 of them for a handout I created. I could go back and forth and type in the number on the handout 3 or 4 digits at a time - not the entire 10 in one whack. (Cut and paste was not an option this time-just short term memory.)
The spouse suffers in this, too. I ask him multiple times about something coming up or what he might want for lunch, say, and he gets to thinking that I am a huge nag. Or I don't communicate with him at all about something that blows up later. Lucky for me, he is pretty patient. As for Lucky the dog, during this cold weather I stand at the open door to make sure I get him back inside when he is done with his abolutions - I can't risk leaving him forgotten on the porch in these temperatures.
(added 1/7/10) Thanks for all the comments - you all are great! Maybe my problems really stem from the central air handling unit that resides over my office: .
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