Friday, July 30, 2010

Summer food is great!

Thank goodness for all the fresh veggies and melons and blueberries that are offered in the stores now and at farmers markets. I picked up a 2 pound package of huge blueberries at Sams - those will be my weekend treat. We also stopped by Aldi last night, and they had a special buy on frozen cooked mussels - only 2.99 a box. The only time I remember having mussels was in Vancouver, BC, during that fantastic MLA conference (ah, librarians-the best people to get together with!). I figured I would try them again with my new mouth, and it was very successful. I bought one box frozen in their 'natural juices', and one of 'garlic and butter' flavored, heated them up (less than 10 minutes, folks), and sat with my bowl full of steamy mussels in the shell and snarfed. Lucky the dog looked wistful, but it was only because he loves butter - would have been great to see what he would have done if I had flung him a shell (but that was NOT going to happen). I will have to catch up on veggies today after skipping them last night, but the mussels were so fun that I stopped there.
Today is National Cheesecake Day, and since I can by-golly do some cheesecake, I bought 2 frozen Cheesecake Factory cheesecakes at Sams and am taking them to work. I don't share too much with eating things at work, so when I can, I want to make a special event. Plus, its cheesecake! Can't go wrong there...

Monday, July 26, 2010

First MRI in a while tomorrow

I am up for my now-annual checkup (first time it has been set for a year since 2006), and one of the things called for is an MRI of my head/neck with contrast. If you are up for an MRI for the first time, you can find out more about the procedure at this site: http://www.nlm.nih.gov/medlineplus/mriscans.html . As the page says, "the MRI machine makes a lot of noise"-heh, that is an understatement. Ask for earplugs-they are necessary. Here is another link about MRI of the head, specifically: http://www.radiologyinfo.org/en/info.cfm?pg=headmr. There is a form to fill out before they do the scan, asking if one has implants or metal in the body-I always let them know about my titanium plate and crowned teeth, but by now all they should have to do is check my patient record. As far as I know, I don't have any other clips or metal bits in my body from previous surgeries or accidents. The magnets are always 'on', so nothing metal is allowed back in the area-there are ugly stories about accidents involving MRI's terrific magnetic forces.
I have never really noticed that the scan is done in a 'tube'-there is a light on in there, air flows over my head, and I always ask for a dry washcloth to be put over my eyes so I haven't personally seen how close the sides of the tube are to my head. My head is placed in a cage of sorts to hold it still. They put more sponges/wash cloth/something along side my face to keep me stable for the test (that is actually the most uncomfortable part of the test-much worse than getting the IV set up- if they happen to hit my bad ear and radiation neuropathy'd cheek area as they shove the wash cloth down between the cage and my head). Your doctor can set you up with pharmaceuticals to relax you, if you might be claustrophobic - always ask for them. The technicians can talk with you throughout the scan, so you aren't ever alone.
Don't worry about dressing up for this test. Leave all jewelry, etc. at home or you can put it in the locker in the dressing area. Piercings of any kind and anywhere on you should be taken off, of course. Another modern wrinkle-if you have a tattoo, you might find it a hot spot during an MRI-it heats up iron-based inks.

Saturday, July 24, 2010

Note from the Cheeky Librarian

If you are an ACC patient (or family member/caregiver) going through your initial treatment period, please remember that each of our stories and disease progression are different, since this is a very rare disease. Some of us go decades without additional cancer showing up, after the initial treatment is completed. Others have mets show up quickly, and have to go into accelerated treatment protocols just to see if the cancer tide can be turned back to healing. If we all got in a room together, we would each have a different story to tell, I can bet you. We still have each other-we just can't use each other's stories to judge what we will face ourselves in the days/weeks/months ahead. But we can sure lean on one another. Stay close to your professional treatment team - they will be your generals in this fight. Contact your local medical or public library for additional research information that you can discuss with your team - I have links on the right side of the blog to help you find libraries. Gather strength and support from your family caregivers. And let the rest of us ACC fighters know how we can help support - whether it is helping with fundraising, getting the word out, or just emailing you with the latest funny animal picture from icanhascheezburger.com to give you a laugh. None of us asked for this particular path in life - my personal request was to have enough money to put in an in-ground pool-but we are walking it, and we are walking it with others that know a bit of what we face. Aching heads - many of us have those (sometimes feels like there are two of them on my shoulders); ringing or plugged or silent ears-yep, due to radiation or fluid buildup after surgery; facial muscles that no longer obey commands; fears in the middle of the night that that pain in your back is a met; worry about partners/children facing another round of illness in the household; carving out life while wearing the cancer badge... Most all of us have similar feelings sometime, so please know you are not alone unless you want to be. The ACC folks I have met are a very warm and respectful bunch. If you get the chance, attend the Mokene, IL Attack ACC fundraiser on August 7-you will see what I mean. If you can't attend but want to meet others online that face similar things that you find yourself facing, check out the forums I have linked on the right side of this blog. You can always drop me a comment, too - I am fairly good at answering. Please remember this advice I got from a wise nurse: despite having our lives changed by cancer, WE ARE MORE THAN THE CANCER. Enough said.

Another ACC warrior is gone

I learned from a concerned reader that Audrey McCutchen died yesterday after fighting ACC since her diagnosis in May 2009. You can read her story on her Caring Bridge blog: http://www.caringbridge.org/visit/audreymccutchen/mystory.
notes from her blog:
"[Her] memorial will be held at
11am on Saturday, July 31st 2010 at
Divine Mercy Catholic Church in Merritt Island, FL.

(Map at this link: http://tinyurl.com/33x7k7a)
(Hotel information: http://www.gui-dynamics.com/Hotels.htm)
In lieu of flowers, Audrey requested donations be made to the Adenoid Cystic Carcinoma Research Foundation. Tax-deductible contributions may be made at http://www.accrf.org. ACCRF is the key catalyst for ACC research, as the patient population is too small to receive research funding from most other sources such as the American Cancer Society."

Thursday, July 22, 2010

Where has the Cheekymobile been lately?




Back in Omaha now, thank goodness, but the Cheekymobile has been traveling. I went to Branson with my mom - we both like the same sort of things, and she didn't complain once if I made the wrong turn, or comment ever on how Iwas driving on the VERTICAL roads in Branson. (The rule there is to strategically place a 4 way stop at the top of each mountain.) The Cheekymobile may have to have its clutch or its emergency brake looked at (joking-I think they are ok), after all the stop and go on the hills that I did. We had a marvelous time.
First, we went on the paddle-wheel Showboat Branson Belle. We ate lunch in the exclusive Paddle Wheel dining room, where one
waiter took care of us and only 4 other parties as we watched the lakeshore glide by, eating wonderful food (mine was a fish dish with cheesecake dessert, and mom had the carribean chicken). Nothing like decadence when one can savor cheesecake on one of the biggest man-made lakes in Missouri. We went down to see the show during their intermission-there were long rows of tables in front of the stage where the folks who had the regular tickets were eating. The show was wonderful-a comic magician, and a 4 person dance/singing act that had all the energy I would need for about the next 20 years -but they spent it all in an hour. Mom and I had a blast!
That night, we went to see Brule (accent over the e). I have the group's cds, and had heard them in person at a library convention in Sioux Falls, SD about 5 years ago. Their music was what I listened to during the radiation weeks, and all night long after my skull operation - really good stuff. To see their big show in person was fantastic, and we felt drained by all the clapping and vicarious dancing that we did while watching them. I met the leader of the group afterwards, thanking him and his family/group for sharing their art, and telling him I met him back in SD. He laughed, and said that they had been worried about that gig, wondering how librarians would react, then how they w
ere very surprised to see us dancing on the tables (I know the librarians that did that-not me, but some of my wonderful, spirited colleagues). After the two great experiences we had on Tuesday, we thought maybe the rest of the week would be downhill, but the 12 Irish Tenors were on the ball Wednesday morning, and we again had the time of our lives. Had lunch at an Italian restaurant, with both of us having fish in a nearly empty place (ate early, and the place filled up as we sat there). Traffic getting around Branson is a nightmare, even with less tourists-I would not want to be there with the usual number of visitors. Unbelievable about the traffic, but most folks are polite and will let you out if they too are stopped and waiting on traffic. We took one trip down to the 'old downtown' on the east side of Branson-didn't even get out, parking and traffic were sooo bad. That is the side of town that has a brand new convention center (Hilton is the convention center hotel), so they have created a series of upscale shopping over there for the visitors that haven't a prayer to get over to the west side of town during their meetings, and called it Branson Landing. I actually wanted to see a couple of the shops there, but it was walking outside, and with my aversion to heat and sun (the hat was doing nicely, but couldn't protect from the sidewalk's radiating heat), we just made our way slowly in the car back to the condo we had rented, and sat there, watching the golfers that trekked their way through the ravine in back of the condos that had been wrestled into a golf course. The heat hadn't let up by the time we went to the Shepherd of the Hills play at 8pm, but mom had again gone
first class and bought the VIP tickets so a tram would deliver us to the second row seats. I swear the road was built on a 87 degree slope-no way we would have been able to walk it. The play is celebrating its 50th year - oh, and if you have seen the John Wayne movie version of Shepherd of the Hills, you haven't got the right story from Harold Bell Wright's book (the actors told us that before the play started). The pre-show was a frog jumping contest for all the kids in the audience, trying to get their wiggles out before the long play started. It was fun to watch, but the actors in their wool-based period costumes were wiping off beads of sweat as big as marbles. The sun went down about intermission, which was a square dance party that involved the audience if they wanted to join in. The play started up again, and ended with all lights out, tree frogs and crickets singing and chirping loudly, and the two separated lovers meeting up after death, dressed in glow-in-the-dark sheets and rising to the top of the barn by way of a winched platform. About the time they got up past the top of the barn, a shooting star-real one, honest-appeared, so I have a wish that still needs to be made.

Thursday was shopping and one more show-Moe Bandy. Mr. Bandy was the only 'country music' show we saw. He was performer of the year in 1979, so I remember hearing him on all of my road trips, truck driving days, and driving to and from college, then again on AFN in Germany when they would have their country music hour in the day. He stood up on stage and admitted that our group of 60 or so in the audience was 'light', but he and the band would play as if we were 3000, which is what the theater held. And he lived up to his promise. His troupe included a funny comedian/clown named Harley Worthit. Mom got to get up close to one of her favorite singers, and he gave me the chance to get their picture. He promised to stay as long as people wanted to talk with him, and I bet he did. One of the great parts of his show - he sang all the top songs that he had originally said 'no' to when their writer sent them to him to consider-and each one of them had gone on to number one by another artist. Not sure I could be that big a person about what I passed up-gave me something to think about.
The coolest thing was - each of the 5 shows had a different tribute to the veterans. The Irish Tenors played the songs of each of the branches, and asked people to stand when theirs was played. Brule gave a special drum tribute to honor veterans. Moe Bandy asked veterans and spouses to stand as he recognized the branches-I got to stand for Rick's (and my) service. The most touching was at the play-they had a color guard on horseback come in, and the audience sang our national anthem, and pledged allegiance.

The trip was good, and even though I was only a few hours away from where I did most of my growing up, I felt like we were on another planet while there. I had very few food issues - having menus on the web gave me plenty of planning time, and staying in a condo meant that most of our meals we cooked. Mom had a great time, and I was happy for that too. Collecting memories is about the best thing I can spend my time doing, these days!

Wednesday, July 14, 2010

We lost a champion this month, who left us with advice

I just mentioned Amy Jackson in this blog back at the end of May - she had been diagnosed on April 15th: http://cheekylibrarian.blogspot.com/2010/05/adenoid-cystic-carcinoma-in-news.html. I just learned that she died on July 3rd. My sympathies go out to her husband and 6 children, and all of the community that has supported the family during this rough road. I took a look at her blog: http://kissesforamy.blogspot.com/, and found that she had given us all advice to follow. I include a quote here:

"Enjoy the simple things in life... Every minute you spend with your children even doing the simple mundane things of everyday life is important... Take time to make the most of every little thing you do with and for your children. Enjoy time talking to and listening to your kids even when talking about the most simple topics. cherish every minute with your family. Never take for granted the little moments. We often remember and think about major moments and events in our families lives, but I am now convinced that it is a combination of all the little things, things that we do or say during everyday living, that make up what we really know and remember about each other. It is those things that really develop the relationships that we cherish. Consciously put to memory the little precious moments with each family member. Don't take for granted all the little things in life. Take the time to count your blessings, be grateful for every minute (even the hard ones or times when you may want to pull your hair out), take time to share your love with each of your family members, and Enjoy the simple things..."

Tuesday, July 13, 2010

I just saw Brule in person!!

Ok, I know you aren't supposed to say you are out and about when talking on the web, but I cannot remain silent. I just saw my most favorite group of performers-singers, dancers, instrumentalists-while here in Branson. (Yes, if you have heard any Cheekymobile sightings in southern Missouri this week, they were true.) Brule (there is an accent over the 'e', but this librarian hasn't figured out how to type it) is a contemporary Native American music group. They are award winners- individually and together. The leader of the band found out later in life that he was Lower Sioux Brule (no accent over the 'e'), and began to meld his two worlds together-his unknown heritage with today's world. Here is their site-http://www.brulerecords.com/home.html. They don't have a word for goodbye in the Lakota language-just one that says we will meet again, either here or in the next world. I have met them before, in Sioux Falls, SD, when they played at a librarian conference. They were the music I listened to on my iPod after the skull operation, when I was so happy to have my memories. They were the group that I played the loudest in the Cheekymobile when I lost my voice last summer. They are the group that my mom and I listen to in the car during our road trips, including the one to Gulf Shores and last year to St. Louis. I have never been a 'groupie', or a 'fan' (short for 'fanatic', after all) of musicians, but I was unashamedly that tonight, after listening/experiencing their music and dance at the RFD-TV Theater. My mom and I loved every minute of the night-what a way to celebrate life!
This may be a stretch, but when I received the diagnosis of cancer, I too began to walk in two worlds. Thank you, Brule, for giving me strength and rhythm for my strides as I work to keep up with both of them. Keep on keeping on, Brule. Congratulations on your success, and I wish you years more.

Friday, July 09, 2010

Adenoid Cystic Carcinoma in the news

This news comes from Williston, North Dakota, via the Williston Herald website: Local cancer survivor stays focused on her life, not fear http://www.willistonherald.com/articles/2010/07/03/news/doc4c2fc0f397874189380350.txt .
Suzi Lee was initially diagnosed in 1989 with ACC, and underwent treatment at the time. The cancer came back in 2007. She, like the rest of us, knows she isn't in the clear even when the scans show no evidence of disease (NED), but she stays focused on living. A quote from the story:

"That's kinda where my focus is. I don't want to worry about it (cancer). We do what we need to do to monitor it and live life the rest of the time. I believe God has a plan for me, and I don't want to stand in the way of it," Lee said.

Thank you for sharing your strength with the rest of us traveling this road with you, Ms. Lee.

Thursday, July 01, 2010

It's been 4 years

Thank you, new or long-term reader, for following my story or the news about this cancer I have posted over the 4 years.

Wow - 4 years ago, I heard the surgeon say, "The tumor was adenoid cystic carcinoma." Not the news anyone wants to hear, and definitely a holiday weekend buster. We told the kids, then all sat down and watched a new movie we had rented: Queen Latifah's Last Holiday (hey, it worked for me, and started some good family discussion at a time we were all shell-shocked). We spent the next few weeks seeing how cancer would fit into our family life, and healing as quickly as possible before the radiation started. Since that time, I have done more healing, and had more news to deal with (2007-another "growth" in my skull that had to get whacked out), and scans scans scans to see if anything else was growing in the Cheeky Librarian physical body.

I hope this blog continues to be a source of information for anyone facing Adenoid Cystic Carcinoma, or their caregivers/friends. I also hope it shows that life does go on - I didn't magically transform into another person through all this. I have retained my cheekiness, believe me. Just because I have survived this crappy disease for 4 years does not make me anyone special - luck, support, and cussedness all play a part (and, according to new research, thinking of oneself as good or evil helps: http://mentalhealthnews.org/good-evil-acts-can-increase-physical-abilities/841389/). But if I can use my professional skills of locating and sharing information (the "Librarian" part of my blog title is no lie), then there might be something positive to come out of all this. If you just got the news that you have cancer, my wish is that something in these 377 blog posts is of use to you: humor, information, description of my individual treatment path, or links to others that share our diagnosis and their stories.
 
Who links to my website?