A mere 5 years ago, I was in Indianapolis for the 2008 Girl Scout convention. What a wonderful time. .... until I learned my daughter had breast cancer. You all sent me off in a sea of love.
In a few hours, I leave once more for my daughter's place -- I am in Michigan, she is in Tennessee.
This time I want to be with her when she hears the results of tests just ordered after an MRI found suspicious spots on her pelvic bone.
The meeting with a new oncologist comes 5 years, 1 day after she first learned she had breast cancer.
She is working full-time, newly married and back in school for pre-reqs to become a physician's assistant.
She learned how to do breast exams while at a Girl Scout function.
Girl Scouts helped her learn to speak up -- that skill is why she was first diagnosed and why the first test was just done.
Her Gold Award project was getting children's books and other activities into waiting rooms of public health clinics.
Your strength will once again go with me. We are praying for the best outcome.
Today I found another good reason to write. Documentation of symptoms and feelings help me remember that relapsing-remitting multiple sclerosis is a tale of repeats.
I'm trying to clean up this blog and ran across an unpublished entry from 2009 that works just as well today.
Good: I didn't scream when the saleswoman touched my foot after noting how swollen it was. But then she didn't comment on the black-blue shoe combination until I did.
The fact that my eyes once again had blurred colors, well that was bad. But certainly it is good that now I saw the difference.
I want to be positive. I want to see good - some good - in all. Heck, I probably have more "positive thinking" books then the "be organize" ones and I already knew I needed a book on organizing them.
That was yesterday and today I am heading out the door now to get fitted for a new foot-ankle brace in an effort to avoid a cast and/or surgery.
Fortunately, I only have black shoes now.
I still have the positive thinking and get-organized books. The good news is I can read again. In fact, I've finished two books and a paper sack of magazines the past two days. Oh, happy days are here again.
I cannot remember the last time this happened. But this year, my husband met the medical deduction before me. Plus, the year was more then half over before I did meet mine.
Unfortunately, I have quickly met that limit in just a few intense months. I prefer the confirmed diagnosis of a multiple sclerosis flareup over the scarier possibility of strokes. Still I could have lived forever without the temporary vision or thinking problems.
I did not really want an MRI or an MRA. I could have skipped all of the X-rays, the steroids and the breathing treatments.
I also could have skipped the foot pain. I definitely prefer barefoot over embracing the ankle-high brace and inserts that go so nicely with the black, matronly shoes. Still, I was getting tired of frequent eyeball inspections of the floors and the lawn.
Plus isn't it lucky that the lust for shoes skipped a generation. Unlike my mother or daughter, I have never wanted found shoes fascinating.
Now I just need to guesstimate how much we want/need in the medical spending account next year. Then predict what medicines my mom will use in 2014 so I can play Medicate Part D roulette and pick a plan that might cover most of her drugs the longest.
Get ready to be bombarded with color this month. No, I'm not running in a race where they throw colors at you. But it is October and that means it is the Pink Month. Pink as in Baby, it's Breast Cancer Awareness Month.
Also kicking off this week is a national effort to get more females involved in Girl Scouts. Even Michelle Obama, the honorary Girl Scout volunteer, has recorded a message urging females to get involved.
I can't think of a better color blend because Girl Scouts is just one of the reasons my daughter survived her fight against breast cancer. The importance of regular exams of your breasts was emphasized at a health fair she first attended as a Junior Girl Scout, back when Juniors were in the fourth-, fifth-, or sixth grades.
The American Cancer Society handed out fake boobs with bumps for practice. The girls got to take them home. Fortunately, that started my daughter on a regular routine that led her to discover her bump when it was small. Too bad her doctor didn't realize that girls in their early 20s do get breast cancer and didn't take her seriously at first.
But Girl Scouts also helped my daughter develop courage and confidence so she didn't let that bump go unnoticed much longer. With radiation, two bouts of chemo and some surgery, the cancer has now been gone for four years, and almost four months.
I wish every girl had the opportunity to be in a good Girl Scout program. That would be a program where they are surrounded by strong people, especially strong women who are willing to carve out time to let some girls learn to bond with girls who are like them and different from them.
A good Girl Scout program would be one where the girls learn to make good decisions, learn to lead, and learn to succeed. A good Girl Scout program also would be one where the girls fail and then learn why failure happened, how to recover from a failure and what to do differently.
A good Girl Scout program would be one where the girls go outside their normal, day-to-day life to try things like sleeping in a museum, or climbing through a cave or sleeping on a floor in a room with 60 others who start out as strangers.
A good Girl Scout program would be one where girls could sleep in a tent with three hours, row a boat, ride a horse, roast a marshmallow, ride an elevator, see a 30-floor building and hear an orchestra play live.
To create a good Girl Scout program, someone needs to listen to the girls and be a resource. You don't have to be a parent to volunteer. Visit the national Girl Scout site to volunteer.
It has been a rough month of tests for me. But Henry Ford Health Systems is the winner in my world.
Friday, I had an MRI and an MRA done of my head, brain and neck.
Saturday, the hospital notified me by email the radiologist's report for six scans was available for me to read.
That means I didn't have to wait until Monday or later to hear from my doctor about the findings. Yes, I still need to follow up for the next step. But it is reassuring to know now that at least one doctor was way off in his explanation of some medical challenges.
The entire MRI visit was made better because of the electronic records. I had just been to the neurologist who ordered the tests. We had reviewed my medicines -- those I am taking and those I should be taking. All were in the system so I didn't need to repeat the list. I did not fill out any forms or repeat why the tests were needed. I did have to show I was who I said I was, though I am not sure anyone would willingly show up at 6 am on a Friday.
An open MRI machine similar to where I was for 90 minutes
The radiologist had access to an MRI done in 1994 for some comparison so that was a help too, especially with one of the findings.
I can't wait for more doctors and services to be online together. Right now, the patient has to coordinate care when more then one doctor is involved, especially if they are not in the same health system. We don't always know what to share.
An electronic record patients have access to could prevent errors -- I recently read a doctor's report that incorrectly listed my parents as dead. Another doctor's report listed 3 conversations we never had. (Trust me I would have remembered those warnings).
A simple question asking if I knew Stephen Hawking kicked my morning off with a heavy exam of my thoughts on assisted suicide.
Hawking has changed his position, now allowing someone with a terminal illness should be able to end his/her life. Interesting, since the 71-year-old physicist has lived with motor neurone disease* far past the two-years to go deadline doctors issued in 1963.
Hawking told the BBC about his change of attitude while answering a question about how he once was kept alive by machines and his wife given the choice to turn them off.
Although assisted suicide is illegal in Britain, Hawking argued that since we do not let animals suffer we should not let humans suffer. Still the decision to end another's life must not come easy, Hawking said.
"There must be safeguards that the person concerned genuinely wants to end their life and are not being pressurized into it or have it done without their knowledge and consent as would have been the case with me."
The BBC interview (see below) is worth a listen -- he knows how to find a silver lining! For instance, listen to what he says about disabilities, committees and meetings. In 2006, Hawking was quoted with remarks against assisted dying.
"I think it would be a great mistake. However bad life may seem, there is always something you can do, and succeed at. While there's life, there is hope."
I don't have a good answer for assisted suicide or as some call it -- assisted dying. I'm not willing to outlaw it for others. But I'd want to make sure that there truly was no hope of living before allowing someone to choose death."
I've struggled with how much of modern medicine do we use to keep someone with late stage Alzheimer's Disease alive -- worth a flu shot? Antibiotics? Bypass heart surgery?
Counter that with what we would have missed if someone had decided curing Hawking's pneumonia was not a good investment.
Back in Cambridge
Meanwhile, back in Cambridge for tonight's movie ... Hawking, director Stephen Finnigan, and other guests will then answer questions from the audience and some gathered from the film's Facebook and Twitter accounts. Even better, that Q&A is being beamed to about 70 cinemas in the United Kingdom. (Fingers crossed that someone will secretly film and then share since it is not being broadcast to the United States.)
The film follows Hawking's "journey from boyfriend underachiever to PhD genius," before and after the disease that has had him on life support for more then 20 years.
Hawking and Sheldon. Hawking
introduced the group
via video at the 2013 Comic-Con
I think I first learned of Hawking in a late night discussion over at Lyman Briggs College over at Michigan State University. Black holes, anyone? Certainly not a topic most freshmen journalism students would discuss.
But that was the beauty of mixing students studying journalism, English and other liberal arts subjects with would-be scientists, letting each claim rooms in the dormitory that also housed the college for brainy soon-to-be physicists, doctors and such. Both sets were introduced to unexpected subjects.
Big Bang Theory recorded
a video greeting for premiere of Hawking
Of course, those talks with the would-be physicists gave me an insider's knowledge when watching Big Bang Theory. Sometimes I am surprised that I understand some of Sheldon's or Leonard's white board scribbling.
Can't wait to see how the show will deal with Leonard on his expedition with Hawking. Meanwhile, do what I did and explore the Hawking entry on the Big Bang Theory wiki.
* A rose is a rose is a rose ....
I was so puzzled when I first heard of motor neurone disease. Then, I learned that is just what someone in the United States might call Lou Gehrig's disease or amyotrophic lateral sclerosis. Just one more example of how geography affects our language, even when we both speak English.
A sneak preview/trailer
Hawking opens Sept. 20 in the United States. Here's the trailer. Enjoy.
Ed Vielmetti, who once blogged for the AnnArbor.com site and has blogged longer then anyone I've ever met, weighs in on bringing back the Ann Arbor News name and folding Ann Arbor news back into the mlive.com site.
His verdict?
Things are bad, but not as bad as they would seem.
He worries about links and the lost of information, but points out the Internet Archive's Wayback Machine saved all of the content and most of the links. So far, the original content also is available once you get past the former home page.
Vielmetti, a longtime Ann Arbor person, continues to serve as a focal point of information of the city and community. He continues to update the ArborWiki, always reminding anyone can contribute. He blogs, he tweets and he connects those seeking information with those who might know.
Vielmetti acknowledges breaking news and the big news. News spreads quickly via Twitter. The entire news in Ann Arbor has drawn attention from all of the major media news sources. The city is rich with alternative media including the Ann Arbor Observer and the student newspaper at the University of Michigan. There also are bloggers, who become often start because of a certain issue.
Sure, you expect former Girl Scout campers and staff to be sad.
I am sad because it reminds me of the three Girl Scout camps I believed in and lived through their closings.
I am sad because the number of Girl Scout camps is dwindling.
Thankfully Mandi Elizabeth explains why even non-Girl Scouts, non-campers should mourn in a post that explains what is so special about a girl's place in the woods.
Susan Harrington, who I met through WAGGGS-L, one of the oldest email lists for Girl Scouts and Girl Guides, introduced the post this way:
"Anybody who can start singing if I type "mmmm, I want to linger...." will appreciate the bittersweet eloquence here. And anyone who can't, well, read the post to see just some of what I love about Girl Scouts."
Indeed Mandi Elizabeth, a college student still active in Girl Scouts, captures the magic of Girl Scouts, the amazing transformation that comes when you spend time being accepted for who you are. Girl Scout camp is the wind that helps the light grow.
But, I'm wasting your time here. Mandi Elizabeth says it so much better so please go read "Goodnight, not goodbye"
Then linger and ask yourself where will the "non-perfect" girls of tomorrow will find a place where
"no one cares what clothes you wear. Heck, no one cares if your clothes even match. No one laughs at you when you fall down and scrape your knee. There is no embarrassment, there is no harassment, there are no mean girls."
Mandi Elizabeth is talking about Camp Yaiewano, closed in September 2013 by Girl Scouts of NYPENN Pathways Council. Mandi Elizabeth is talking about every Girl Scout camp where a girl discovered her uniqueness defined her and made her as worthy as the most popular girl in any school.
I'm glad that the Ann Arbor News name is coming back. To me, the name of AnnArbor.com indicated a web site about all things Ann Arbor, Michigan.
John Kroll puts together five thoughts about the ending of AnnArbor.com on his Digital blog, including praise for the initial bold move, higher praise for its handling of online comments, and a reminder about one of the better assets the site let go. (We're talking about Ed Vielmetti, an Internet old-timer and one-man news agency for his city, interests and communities..)
By the way, if you are still interested in what's happening with Advance and get tired of waiting for me to make public my thoughts or share some links John Kroll Digital blog is well worth your time. Maybe I say that because I like how he predicted his early retirement. while working for the Cleveland Plain Dealer. More likely I say go there because he writes about it frequently. ... he ended 27 years at the Dealer in 2013. Go John.
Of course, Free From Editors still remembers to share updates, including a link to a blogger's reaction to doings at the Cleveland Plain Dealer. Hint: Blogger loved newspaper's coverage of Castro, not so happy with digital version review of a cheesecake factory. Go. Read. Chuckle and thank Slate for bringing us this highlight from a crime blog.
Goodness, I'm not sure what disappeared faster -- the days people call summer or my life online.
One moment I was encouraging my husband to get the pool open by Memorial Day. Today, just days from the traditional last big splash, I realize only my feet have touched the pool water.
Equally surprising is how quickly the online landscape changes. It seems like it was just last week that I was twittering, filling my Friendfeed, blogging and keeping up with sites like Publish2, Pinterest, Plurk and so much more.
But goodness, a Social tab in Gmail hides Twitter messages that try to lure me with what's being said and StumbleUpon sweet summaries of the best. The Feedly set up to replace Google Reader is locked in a laptop that decides randomly if it will turn on. The spreadsheet that lists my social homes and magic words is garbled and unreadable on a thumb drive that landed too close to a big magnet.
Tell me again how much I'll love Windows 8.
Tell me again HP how you can't find anything wrong with the laptop that you could not save anything from because the hard drive was destroyed.
Tell me again why my backup device won't work and my iPhone battery has less energy then a person with multiple sclerosis on a hot, muggy Michigan day.
Just don't tell me I've become a curmudgeon who resists change ... unless you are sending those words to me in an envelope with a first class stamp.
The 60s once invited images of groovy times, free love and "my way or the highway." Yes, the 1960s defined life for us.
Apparently, the 60s continue as a defining statement for us and our blogs. The search for living a significant life consumes.
A 60th birthday becomes the last milestone by choice for one man. What is unusual is he documents his decision making and leaves his biography for us.
Martin Manley spent years in journalism and left us a pre-paid website so we will remember what he wants us to remember about his life and his death. What would you write for your last words?
Did it take courage?
Bill and Carol Mitchell also are in their 60s. They, too, chose to change their lives and to blog.
I am not contemplating suicide. I do understand the desire to leave footprints
I know I am not downsizing ... yet. I am not leaving the familiar to try on a new city, a new way of filling the days or moving out to new experiences.
I think about the courage it takes to say enough ... Enough days. Enough stuff. Enough.
Some people are good at remembering the people who cross their paths.
I am not. I want to remember when we met, how we met, why we met. I want to map the relationship to help me recall.
I rarely want to let go of anyone, even those who want to go, who should go, who should have gone.
It is hard for me to clean out my Facebook, MySpace, LinkedIn and all the other placesI hooked up with folks. I have address books from college, from first jobs, from other lives.
I am Twittering again, or trying to is perhaps a more accurate statement. I see who has stuck around there and I remember vividly why they are there. Seeing their name reminds me of conversations once deemed important. There are 1,000 or so names there today, following me on Twitter
Yet if I were asked to name 1,000 people I know right now I don't think I could. I need the prompts of the social media tools, my new address books.
I want to hold onto "old friends" even as I struggle with choosing a topic that will be worthy of a tweet.
I want to yell about the senseless beating of a teenager, the anguish of parents, the outrage of what the law allows.
I want to share the joy of a couple on their wedding day, the absurdity of picking up 24-packs when 12-packs are ordered and the exhaustion that creeps in to steal all motion from legs that stop listening to my brain.
Instead, I watch people whitewash their pasts. I wait. I wait. I stop.
My best efforts to ensure my little girl would not live in a sea of pink were useless. She loves pink. She lives pink. She wants pink.
I am reminded of her love for pink right now as I sit in the midst of pink flowers, pink glitter, pink paper, pink .... Well you get the idea. She is hundreds of miles away. I am in crafting, creating small pieces of pink for her upcoming wedding.
I wanted her to live in a world without stereotypes. But I knew pink was her color of choice early on just by looking at her toys or the clothes she picked out.
At least my effort to ensure she would know she could be anyone or anything she wanted to be turned out better. Right?
Certainly, you need to be a strong woman to move to another state permanently.
Certainly, you need to be a thinking woman to succeed in business -- she's a store manager in Tennessee.
Certainly, you need to be a wise woman to know sometimes you need to start over. She now volunteers at a hospital and will go back to college this fall for a few classes needed before embarking on a venture to become a physician's assistant.
First, though, there's a pink and aqua wedding in Tennessee. Pink bridesmaids' dresses. Pink bouquets. Pink glitter, pink ribbons, pink this and pink that. Even the white wedding cake will showcase some pink -- in the form of the pink cancer ribbons.
After the wedding, she'll go to school and work.
After the wedding, I'll donate any and all pink flowers, fabric, ribbon and other craft leftovers to help an area breast cancer walking group raise money.
After the wedding, I'll try to figure out why I ever thought pink wasn't a good color for girls.
Surprise. Some still check this area to see what's new and what's spilling out through my fingers.
Sadly, perhaps, I've take another vacation from writing, from reading most blog posts, status updates and Twitter.
Saddest of all is I've lost interest in newspapers. Instead I get my news from the TV, from the Internet, and from friends and family.
The newspapers pile up because I still cannot stop subscribing. I cannot throw out an unread newspaper.
For awhile, I was checking the advertising inserts carefully. But then I realized I wasn't going to head to the stores for the bargains unless I had a need. And do I need an ad to tell me I need something? That makes it easier to throw out the ads unread.
I pick up the newspaper each day it is delivered. I start to read it and then get stopped by another activity, or worse by an unanswered question in the story. Take a short piece about a film at local place. The writer explains the details are on the website. My questions: Which website? The film's? The place where it is being shown? The one where the article is?
The surprise is how little of the what is in the newspaper is relevant to the day the newspaper comes out.
Perhaps though this interest was just dormant while I worked on preparing a body worthy of the new mechanical knee inserted in my flesh.
This week I spent a whole morning hunting through Facebook, catching up on family and friends.
The big splash on TV on another big study on breast cancer and the upcoming pinking of everything reminded that most don't know my daughter continues to show no signs of cancer returning.
A search for some information for an obituary for my stepdad uncovered the death of editor Ben Burns and a reminder of his dedication to a multicultural cadre of journalists covering a multicultural world.
Both deaths remind me I've never acknowledged the passing of one of the greatest news people I've ever known. Dave Poniers deserves more from me. But his death came too fast after the deaths of two who influenced my early days in Flint, especially post-divorce.
Yes, life is moving too fast not to stop and share what's inside and outside
Surprise II: This was written months ago and I thought published then.
Welcome to this collection of thoughts. The focus has changed with most posts now on quilting, embroidery, and crafting. The change comes as my life changes -- an exit from the formal, full-time workforce, an entrance into grandparenting, and an acknowledgement that all things eventually end. I still will write sometimes about other aspects of my life, like multiple schlerosis, freelance work and the Internet,. Mary Ann Chick Whiteside, aka mcwflint
Posts
