One Full Year of with a new Pal

One year ago today, I downloaded MyFitnessPal to my cellphone.  At the time, I was unhappy with my weight and casting around for some help.  The app is an Internet food journaling mechanism.

I wasn't particularly enthusiastic about the idea of journaling my food and drink consumption or counting calories.  I knew it was, in fact, a very effective support for weight loss.  I'd done it for several times in my life – for a few weeks, maybe even a couple of months at a time.  It 'works.'

But it's a huge hassle!

Done the old way, counting calories involved writing down everything you ate and then looking up calories in a reference book or list.  Within a few weeks or a couple of months at the most, I'd begin to imagine I could drop the record keeping while still hitting approximately the right calorie intake.  I've never been able to keep it up the journaling beyond the initial weight drop:  just too much nuisance.

Enter MyFitnessPal.

I chose this app because it came with good recommendations and seemed as good as any other.  I cannot make any comparisons, but I now consider the choice pure serendipity.  I really like this app!

My cellphone is almost always near at hand.  And for back up, I also have the app on my IPad and can access it from any computer.

I find it so low fuss, so manageable, that I have tracked my calorie count -- along with calorie expenditure estimates -- every day for the past year.  Though family health crises, my own included, and through travel and holidays and the numerous ordinary and extraordinary events that make up a year, not one day did I find any particular difficulty recording information about my diet, exercise and weight status.

I've dropped 25 pounds and in recent months have actually been using the application to help me maintain my present weight, the weight I was given as my lifetime ideal about the time I reached my full adult size over 45 years ago.

After so many years of wanting and trying to lose weight, the experience of trying to hold a stable weight – that is, to NOT lose more weight -- is a whole new thing.  I hope a year from now I can say I've mastered this phase!

Opulent October, Awesome Autumn,

Speaking of Illness -- Information and Secrets

One of my friends on Facebook asked yesterday if I found Facebook helpful as I navigated the ups and downs of my recent and current trip through the world of medical events. The quick answer is an obvious "Yes; the opportunity to share what I've been going through and the support friends have offered were big helps."

But the whole truth is more complicated.  When my first biopsy was scheduled, I didn’t think I would talk about it on Facebook.  Then one day, while trusting the long odds for a favorable outcome, I did mention the biopsy, more or less in passing.
 

When I first got the diagnosis on June 11, however, I didn't immediately mention it on Facebook.  There were a number of people I needed to talk to privately first and I couldn't 'delegate' the spread of news to random chance.  For a couple of weeks, I regretted having mentioned the biopsy at all.

Nevertheless, I knew pretty quickly I needed to share this experience and I wasn't going to keep quiet.  I particularly wanted to hear the stories of others who had had even somewhat similar experiences.  In order to connect, I wanted the use social media and cyber-media.

My decision was supported by the early knowledge that my diagnosis was not life-threatening.  Had I had doubts about my ultimately survival, I would have had a much more difficult choice to make, because talking publicly means you cannot keep secrets even from those who might wish to be protected – and whom you’d otherwise be willing to protect -- from the knowledge.

If I was ‘going public,’ I needed to tell my elderly mother that I had a cancer diagnosis.  I did not want to create a situation in which a dozen family members had to be drawn into a circle of secrecy and then perhaps reminded from time to time that ‘Mom/Gram doesn’t know.’  Luckily, I could tell her while providing great reassurance that my well-being was secure.  Mom does not use social media, so she could and would be spared much detail.  And my mother and I don’t live close to each other (she’s in Joplin, MO and I’m near Chicago), so she didn’t need a lot of detail – appointments or evolving treatment developments were beyond her ‘need to know.’  But I felt it was necessary to cover the general news with her if I was going to speak of my illness publicly.

I also needed to share the information with my equally elderly father-in-law and mother-in-law; FIL and MIL live a couple of miles from Lee and me.  We interact face-to-face frequently.  I could just imagine constructing repeated explanations for schedule conflicts and unavailability.  Better, I thought, to simply tell the truth from the beginning.  Certainly this was the better decision for me and I knowingly but without much sense of conflict, put my needs first.  Had my news and my situation been more frightening, perhaps I would have been more conflicted.

Interestingly, my decision did not receive unqualified support.  Some expressions of resentment reached me, second-hand.  That part of my experience opens up into some very complex questions about information sharing decisions and secret creating behaviors.  The best decision probably varies from situation to situation and person to person.  But I feel, for me in my situation, I made the best decision.

I feel fortunate that I have been able to speak openly.  I have received immeasurable support from both expected and unpredictable sources.  The general support has been treasured and delightful.  But I believe the very best outcome of my decision was finding someone within my own existing circle of friends who had been through almost exactly the same experience I am going through; she has been able to alert me most effectively at each stage concerning what I might expect as I move forward.

Home on the Range!

Very few discouraging words heard at Triple Creek Range, Montana!

Two Days in Yellowstone

If you go to Yellowstone National Park, there are things you can see for sure -- and things you can only hope for!

Old Faithful will erupt; count on that.	Bison are plentiful.
And statuesque.	They also OWN the roadways.
You can smell the Dragon's Mouth.	And see panoramic geyser views.
Gorges are guaranteed.	But a rainbow at the falls -- that takes timing!

It's A Diagnosis -- but Is It A Disease?

Cancer is a huge diagnosis. Huge in several ways. 

Of course there’s the overwhelming impact the diagnosis has on a person newly diagnosed, and on his or her family and close friends. 

But also huge in terms of the range of medical conditions cancer includes. To say someone has 'cancer' is a little like saying someone has an 'infectious disease' or a 'mental illness'. It can mean so many, many different things. Even to say a woman has breast cancer is still to speak very broadly. 

Generally the details of another's diagnosis becomes ... mmm, dare I say 'boring'? At least confusing and hard to follow. That is, unless you are comparing experiences or are very personally involved in understanding the other person's treatment plan. 

So, if I start to bore or confuse you, feel free to skim and skip. The last two or three paragraphs tell where I am today. 

My breast cancer diagnosis is 'ductile carcinoma in situ' or DCIS. DCIS is sort of 'the sniffles' of the cancer world. Cancer patients and survivors make up the proverbial 'big tent' and nevertheless post-treatment DCIS patients occasionally wonder if they legitimately belong to the world of cancer survivors. 

Like 'the sniffles,' it's possible to imagine DCIS could go untreated and the individual’s body would deal with it. And the medical professionals estimate between 50% and 66% of DCIS incidents would cause the patient no decline in health, let alone threaten life, if simply ignored. 

Unfortunately, the remaining cases go on to become full-blown, life-threatening invasive cancers. At this point, we know of no way to distinguish the sniffles that will go away (or stabilize and matter not) from the beginning of life-altering, even life-threatening pneumonia or tuberculosis, as it were. 

Most patients and most doctors dealing with breast cancers simply have no tolerance for waiting around to see which is which. The bad guys can sometimes move quickly, sometimes move sneakily and aren't anything you want to mess around with. 

So treatment is recommended for all diagnosed cases of DCIS. And the treatments are the same treatments generally used to treat invasive breast cancers -- lumpectomy or mastectomy with or without follow-up radiation. 

My DCIS was identified by a biopsy; the biopsy in turn was recommended based on results of a routine annual mammogram. Obviously I've been getting annual mammograms precisely so breast cancer wouldn't sneak up on me; if I got it, I wanted to catch it and treat it right away. 

But I guess I'd always assumed early detection would also mean less invasive treatment options. So I was in utter shock when the diagnosing radiologist included a double mastectomy in the range of treatments I might be facing. 

In one weekend, I'd gone from having a near-microscopic area of calcification in one breast to a conversation about removing both breasts entirely! 

And it doesn't stop with a conversation, of course. The conversation lead to consultations. Then more imaging: a MRI of both breasts first; then later enlarged images of the other breast. Now, recommendations for further biopsies. 

And the additional biopsies will be done. After which, I expect I will get a treatment recommendation. If I'm lucky, the treatment will be along the lines of a lumpectomy or two lumpectomies. That seems currently to be the most likely scenario. 

But I'm trying to prepare to handle worse news. Because the most likely scenario in early June was a biopsy reading of 'benign.' 

Likely scenarios are nice -- but they aren't definitive. 

And while I wait and prepare, I'm also trying to remember what my yoga instructor tells me so often:  "Breathe!"

Life is a vocabulary builder.

'Lesion' is a good word to know. If you first encounter it in reference to a cut or boil or pimple, you might think it refers to breaks in the skin. That's certainly what I used to think.

Then I'd hear doctors and nurses use it when speaking of things happening inside the body. So I knew I was a little off there.

Finally got around to looking it up recently. Whatdaya know! A lesion is pretty much any abnormality in living tissue.

The Call -- One We All Hope We Won't Get

On Monday afternoon, the 11th of June, a radiologist phoned me from Northwestern Memorial Hospital. Dr. Whuen [not her real name], along with a surgeon and one or two assistants, had performed a biopsy on my left breast the previous Friday morning. I was expecting her call. I was also expecting good news.

Perhaps bigger alarms would have sounded at her first words -- "Is this a good time to talk." -- if my family wasn't inclined to start perfectly normal phone conversations just that way. I am sure I said something like "Of course" or "Couldn't be better."

Her next words, however, brought everything to a halt while I got my husband on the phone with me: "Your biopsy did show the presence of cancer."

This outcome was against the strong odds I been trusting.

Telling her that I was making notes but was struggling and might need to have her repeat things, we launched into one of the more distressing conversations of my life.

By the time we got off the phone, she'd made it very clear that, as far as she was concerned, I would be having breast surgery. In fact, some of the possible outcomes she covered had me believing it was time to get my affairs in order.

At the risk of spoiling the suspense – or actually, because suspense is uncalled for and unfair, I will jump ahead here and tell you that within 24 hours, I understood clearly that my life is not in danger. Nevertheless, it’s been a bit rocky around here lately.

Soon it will be a month since I got my diagnosis. It's been a hard month and not just because of cancer -- or not just because of my cancer.

But I've had a lot to study, much to think about. I've learned quite a bit about cancer, though mostly about breast cancer. And I've discovered some new things about myself.

Some of these things I believe are worth sharing.

So, despite some subtle signals from a dear friend or two that they'd like me to stop using the C word already, I'm going to be talking and I'm going to be listening. If you can listen or you'd like to talk, join me.

Is It Time to Rename the Blog?

In 2008, when I set up this blog, I was following Cindy Fey's blog called 'We All Fall Down.' [Actually, I still follow it and enjoy it: We All Fall Down.]  I liked the way the blog title referenced a childhood game and that inspired my choice of 'Tiddlywinks and Pick-up Sticks.'

I liked the drive, the control or lack thereof, the joy and the muddled confusion suggested by those games.

Most of Cindy Fey's entries reflect the pleasures of family life. But her title is clearly allusive enough to encompass the difficulties of life as well. As she does.

Sometimes I think 'Tiddlywinks and Pick-up Sticks' sounds too playful for the more serious stuff.  Like last year when I was covering the tornado in Joplin and then the recovery efforts that followed; I wondered if I needed a more serious sounding name. But maybe not.

Maybe not.

I think we are about to enter into some pretty heavy going. So if you come here (if I or someone sends you here) to read about cancer, say, or depression or the loss of those dear to us, remember that pick-up sticks present a pile of stuff you have to pick through and sort out and deal with, stick by stick by stick.

And there will always be light and playful moments -- not to mention some flubs and black humor moments that I hope will leave you laughing.

So, no, I think I'll stay with the name I chose in '08, when I imagined I'd only be sharing child's play -- even if that was a bit off the mark.

100 Days of Counting Calories

One-hundred (100) days ago, I started logging my food and calorie consumption.

Since then, I've dropped about 12 pounds, which is an average of a pound every

eight (8) days.


Now, I want to issue a BIG caveat here: I am not advocating.  I think people --

individuals -- need to decide individually what each wants to do about weight. I know what

I want, but I have a wide window of acceptance about what other people do. And weigh.


But I'm happy to share what I am up to and how it's working. If you like it or you want

to join me, great. If you want to talk but you don't like my plan, I'm fine with that, too. If

you'd rather never read a word about it, hey, no prob! Even arguments are welcome.



When I started back in early November of 2011, my weight was threatening to

reach 140 pounds. As a small framed woman under 5' 4", I dread the number 140!



With the temptations of Thankgiving and Christmas and Hanukkah directly ahead,

but the support of winter retreating to Florida also in view, I downloaded a

calorie tracking app to my phone, IPad and computer and got serious about the

weight and fitness issue.



Should I explain more about the Florida part? Each winter for several years now

my husband Lee and I have rented an apartment in south Florida and spent as much

time as possible away from the snow and ice of our northeast Illinois home.

Florida as become our other home.



When in Florida, we walk. That's right. We rent a lovely, small apartment, but

we don't have a car. We can use public transportation; we can hop a cab or even

rent a car if we want to see friends on the other side of the state. But day in

and day out, we walk. I have noticed this has a very desirable effect on my

fitness and weight.



Okay. So, when I started to track my calories back in November, I planned to do

it all winter. I don't remember if I started with a goal; obviously, if I had

one, I don't remember what it was. But maybe six (6) weeks in, I read "The Fat Trap".

A key message of "The Fat Trap" is that the human body has profound biochemical

mechanisms that tend to defeat successful weight loss, assuming success means

taking it off AND keeping it off.



The article generated a lot of comment and reaction, even some thought. I

thought, this reminds me of the whole 'set point weight' theory from the 1990s

and the diet suggestions that came on the heels of those initially discouraging

observations. (Turns out that that theory actually began to show up in the 80s;

you know how fluid memory is.) After reading many articles (should have done a

bibliography but it didn't occur to me until just now), I concluded that just

possibly something above a 10% weight loss triggers the biochemical processes

that make it so very hard to maintain the new, lower weight. Possibly a 10% or

lower loss won't set in motion the process almost guaranteed to undo the entire

effort and worse. Possibly.



A 10% loss from my starting point will put me at 125. My weight fluctuates about

1.5 - 2 (one and a half to two) pounds around a center point, so taking 125 as

the center point, I want to get in the 124 to 126 range. That means I have 2 to

3 more pounds more to lose.


While the early loses showed up every few days, more recently I've often

persevered as long as 16 days before settings a new record. Even taking all of

that into account, I have pretty realistic expectations of hitting 125 before

the end of March or at least in early April.



Then I will attempt to maintain 124 - 126.



If that all works, I'll need a new summer wardrobe!

Let me tell you about Charlie Brown (a true Joplin hero)

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Support Charlie Brown of Joplin

Just 1 week of voting left! Keep it up, we are doing great!
Thanks so much for everyone's support!

http://www.examiner.com/adoptive-families-in-joplin/an-unlikely-hero

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Last May, my hometown was almost blown to smithereens when an F-5 tornado buzzed through town, taking thousands of homes, dozens of churches and schools and over 150 human lives.

Shortly after, a memorial service attracted national attention and attendance, including, on the positive side, the President of the United States.

On the negative side, however, the bizarre and hateful Westboro Baptist Church (WBC) announced plans to protest the memorial service.  Westboro Baptist Church's web address is godhatesfags.com. The group despises the United States of America and pickets the funerals of US soldiers.

While many Joplinites were concerned about WBC, the organization is a particular anathema to one complex man named Charlie Brown: a Christian, a patriot and a gay man with a heart even bigger than his energetic, 6'3" self.

Using Facebook, Charlie set up a page to recruit people to counter demonstrate and shield the memorial service from the effects of a WBC event. Along with other formal and informal efforts, Charlie's plan was so successful that almost no one from WBC even showed up.

At the time, Charlie Brown knew roughly what any thirty-something man in 2011 knows about social media; no less but not much more, either.  But the WBC effort set in motion a learning process that has turned Charlie into an expert in the use of Internet social media for mobilizing advocacy and charitable action.

Since May of 2011, Charlie has spearheaded or significantly assisted about a half dozen separate on-line undertakings, raising the equivalent of over quarter-of-a-million dollars for restoration of public and private property in Joplin. The efforts and outcomes have now spread well beyond the Internet, but Facebook, Twitter and the Internet continue at the center of much Charlie is accomplishing.

In June, for example, Joplin was named "Tea Town USA 2011" by the Midwest deli chain, MacAlister's. The title, based on on-line votes, came with a $7,500 award. Using the network he'd begun building in response to WBC, Charlie helped bring this one in for Joplin.

As the hot-hot summer of 2011 wore on, Charlie and his colleagues recruited more area residents, Joplin 'Expats' and sympathetic friends everywhere. The next big project was Coca-Cola company's annual park grant. Also based on an Internet voting effort, the project brought in $25,000 to help restore Joplin's Cunningham Park, a key venue destroyed by the tornado.

Working with others, Charlie and his nearly angelic followers have contributed to a Craftman Tool contest, helping win $10,000 for a companion town in North Dakota. They spearheaded a major fundraising success involving the Oscar Mayer company, Homes for Hope Joplin and Christian Associates of Table Rock Lake that raised $100,000 to be applied to building new 'green' homes in Joplin.

Homes for Hope Joplin as opened a thrift store in Joplin, offering great bargains for area shoppers while generating additional revenues to support redevelopment.

Currently Charlie and his ever-growing group of responders are vigorously pursuing positions in two significant on-line contests, one sponsored by Examiner.com and the other organized by Reader's Digest.

Examiner.com

Examiner, an on-line magazine with broad U.S. coverage, is conducting a search 

for heroes national-wide in several categories. Charlie is a strong contender in 

the leadership category. If you'd like to join the effort on Charlie's behalf, follow 

this link, register, click the Leadership link and click the block next to Charlie's 

name -- obviously! 

A WIN FOR CHARLIE IS A WIN FOR JOPLIN.

Support Charlie!

Reader's Digest

'We hear you America 2012" by Reader's Digest will provide $10,000 grants 

to numerous communities and a $50,000 grand prize to the top vote getter.   

Repeated and unlimited voting is not only allowed, but encouraged!  If you've 

not voted yet and want to support Joplin, go to 

Reader's Digest, We Hear You

Enter the zip code 64801. Then register and start voting.

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You can follow Charlie on Twitter at CharliesCharity