Bet You Don’t Know What 9/22 Is!

You know how every month is now some kind of cml dayawareness month? Everything from
ethnic group history to diseases to food and activities. September has its share. It includes Suicide Prevention Month, Prostate Cancer Awareness Month, Childhood Obesity Awareness, Traumatic Brain Injury Awareness, Alzheimer’s Awareness, Ovarian Cancer Awareness, Backpack Awareness (this is by Occupational Therapists so I guess they’re concerned with the effects of too-heavy backpacks), Sepsis, Atrial Fibrillation, ITP (involving blood platelets) and lots more. One thing I didn’t see on this list was Blood Cancer Awareness Month.
Blood cancer is not as prevalent as breast, lung or prostate cancers. I’d post some statistics, but honestly, I think it’s too late in the day for me to do that without too much thinking (my brain can only handle math between 8 and 11 AM) so I’ll post some links below.

What I really want to talk about is today, 9/22 is World CML Day. This is actually pretty clever. CML is Chronic Myelogenous Leukemia. It’s of particular interest to me because I am surviving this thing. Yay!

Somewhere along the way, a couple of my regular chromosomes decided to do something funky:

philadelphia_chromosomethu_jpg

The Mayo clinic explains it:

An abnormal chromosome called the Philadelphia chromosome is associated with chronic myelogenous leukemia. Your cells each contain 23 pairs of chromosomes that are made of DNA and hold the instructions for every cell in your body. The Philadelphia chromosome forms when chromosome 9 and chromosome 22 break and exchange portions. This creates an abnormally small chromosome 22 and a new combination of instructions for your cells that can lead to the development of chronic myelogenous leukemia. (here is Mayo’s page on this)

So, this is where the 9 and 22 come from.

Why did this start happening to me? Don’t know. I don’t have any of the common risk factors: exposure to certain chemicals or excessive radiation, a family history or past chemotherapy.

If left untreated, the uninvited Philadelphia chromosome would cause the stem cells of my blood to create many more white cells than needed. These funky white cells would take over because they live longer that regular white cells plus they don’t do their job of killing off germs. As time goes on, I would make fewer red cells to do their oxygen carrying thing on top of my body being unable to fight infection.

Blood cancers are often discovered in people by accident, as was my case. I had elective surgery and my white blood cell count was found to be a little high. A few months later I was hospitalized for an unrelated infection. The heavy duty antibiotics didn’t take lower my elevated white count. I’d also had other infections in the previous months such as several UTIs of which I’d had one previous in my entire life. So this was concerning and further testing, including a bone marrow biopsy, were done, and well…here I am.

For which I am grateful. CML is one of the very first cancers to have responded to targeted therapies. My treatment, Gleevec, went into us in 2001. It was considered a magic bullet. Before that, someone diagnosed with CML in the early stages, as I was, had a 3-5 year life expectancy. The five-year survival rate for CML today is about 60%. I’ve been on Gleevec for 6 years. I had an early complete response and went into remission within the first 9 months with minimal side effects. Since then, there had been no detectable glitches in my chromosomes/DNA. I take a Gleevec pill once a day. It targets the causes of the overproduction of defective white cells. There are several other similar treatments available, now, too. Each has potential long-term side effects. But hey, I now get to live long enough to see if I’ll develop them or not.

It was as first thought it would be necessary to be on this treatment for life, but clinical trials are being run to see if it’s possible to go off as long as careful monitoring is done.

Gleevec and drugs like it are very expensive–$90,000 a year and more. Really. What a round of normal chemo might cost, is what one year of this kind of therapy costs. The quarterly blood tests are expensive, as well.

So, how does this knowledge affect you?

  • Monitor your health. Don’t ignore unusual fatigue, infections and other changes to your good health. I’ve met people (men!) who almost died because they waited until they could barely get out of bed to see a doctor. The further the disease progresses, the more complicated and risky the treatment. It could involve stem cell transplants. Folks have died waiting for a compatible stem cell donor. This goes for people in your care, too. Don’t wait for odd symptoms to go away.
  • Support legislation that provides for parity of cancer treatment costs, oral and self-administered vs. traditional chemotherapy and delivery.
  • Support control of prescription costs and coverage by insurance companies.
  • Know, that while rarer than other cancers, blood cancer can strike at any age. Some are more common to certain age groups.
  • Know that if it hasn’t happened already, you will be affected by cancer, either you or someone you love. It’s a sucky fact, but true.
  • When you are affected by cancer, yours or a loved one’s, get educated. Don’t panic. Deal with your emotions, but don’t dwell on the negative. Reach out for support.

I’m grateful I’m still healthy and that despite job setbacks I have never had to go without my treatment.

Well, 9/22/2015 is over for most of the world. Today, about 8 people found out they have CML. Tomorrow, the same and on and on until there is no such thing as cancer.

cml awareness day uk

Leukemia Lymphoma Society

Leukemia–Hemotolgy.org

National CML Society

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The Comments I’d Really Like to Make on Facebook Posts

If you’re on Facebook or some other social media, you probably have a mental list of types of posts that burn your grits or you would like to leave snarky comments for.

At the risk of alienating my friends and being unfriended, unfollowed, etc., here are a few of mine and the comments I don’t post:

The vacation selfies–the poster in some exotic place with a huge smile or open mouth, etc.

Comment: If you’re having such a frickin good time why are you spending so much time posting pictures? Brag much?

annoying selfie

The posting of a hundred individual photos of a the same place/event/person.

Comment: Haven’t figured out how to make an album yet, hmm?

Sarah's wedding and Philly 048

Sarah's wedding and Philly 048

Sarah's wedding and Philly 045

Sarah's wedding and Philly 043

The grandchild/ grandchildren. “My new grandson, Antler, is the sweetest, cutest blessing that’s ever been created ever by God, man or anything else. He’s so amazing and beautiful and smart, just sleeping here in my arms all squished up like a person who’s just been pushed through a narrow tube that was too small for his big round and now misshapen head.

Yup, your new precious blessing is the best thing to happen to you. Way to make your kid feel like trash. Also, learn to make a photo album. Don’t post another photo of Antler until he’s five.

grandmother

Couple selfies at the beach, date night

Yup, you’re a great looking couple that looks twenty years younger than your contemporaries. Thanks for making me feel old, boring, and ugly.

Laughing mature couple holding hands and walking on beach

“Here I am at the airport waiting for my flight to New York/London/Abu Dhabi/Scranton! Vacay here I come!!!!!!!!!!!!!!!!!!!!!!”

What, you’re on vacation again and you’re only 30? It took my husband 20 years to get a lousy 4 weeks a year for vacation. Do you have a real job? What is it that you do that you can afford to fly places at least once a month and stay at hotels and eat out and go to concerts? Does your employer hire old people? Or do you live in a refrigerator box under a bridge the rest of the time?

young-female-passenger-at-airport

I’m sick of people who create drama in my life!!!!!!!!!!!!!!!!!!!!! My feelings are so hurt!!!!!!!!!!!!!!!!!!!!!!!!!! I know my family hates me!!!!!!!!!!!!!!!!! Someone just said something that makes me want to commit murder!!!! You know who you are!!!!

Well, I don’t. What did this person say???? What do you do that makes your family hate you????? I WANT TO KNOW!!!!!!!!! Stop vaguebooking!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

facebook-drama

The poster you can tell just got off work. You see you have 15 new notifications and 14 of them are from this person sharing some meme about positive thinking or the meaning of life.

Um, don’t you do anything? Can’t you at least tell me what you had for lunch once in a while?

Inspirational memes

Sadly, actor Bobby Bundy, 95, was found dead last night in his Bel Air mansion by his lifelong faithful friend, Spot, who activated the alarm system. Bundy is best known for The Bobby Bundy Show that ran from 1954-1961. He will be missed. Followed by comments like: “This is so sad.” “I’ll miss him so much.”

Spot will miss him. And his agent who hadn’t gotten him a job in thirty years. Having a TV show or being in movies never made anyone immune from death.

This is actually Mickey Rooney who died in 2014 at the age of 94.

This is actually Mickey Rooney who died in 2014 at the age of 94.

There. I feel better now. Thanks for letting me get that off my chest.

What kind of social media posts would you like to see less of? What snarky comments do you keep to yourself?

You Found A Picture of My Child Where?

smudged for blog 2While I’m on the topic of parenting, what are your thoughts about posting pictures of your kids on places like Facebook, Instagram, YouTube, etc.? This wasn’t an issue when my kids were small. The internet was a baby itself that most people had no idea that such a thing even existed. The most instant photography we had were Polaroid cameras which developed special film in the camera and spit out crappy pictures. Everything required film and sending it off for developing and if you wanted far away people to see the pictures, you had to have prints made and snail mail them. (I still have rolls of undeveloped film from when my kids were younger.)

Now, we snap a photo with our phone and tap the screen a few times and everybody you want to see can see it. Depending on the privacy settings on your social media, maybe many more than you imagine can see it.

In researching this, my main concern was that pedophiles can easily access photos, download, and share and sell them with other like-minded creeps. And this is true. Some investigators believe this doesn’t happen that often. Other have seen that even innocent looking family photos can attract unsavory attention. There are websites where predators interested in exploiting children can place orders for the type of photos they are looking for, specifying age, gender, race, etc. Others of the ilk send/sell what they have. Some will even go out and take pictures at playgrounds, etc.

There are also “less” frightening incidences of people digitally kidnapping children by reposting photos of kids and claiming them as their own, creating a fantasy life with other people’s children and posting on Facebook, etc. as if it is real. There are also cases of photos of children stolen from posts that appear in ads without the permission of parents.

smudged pic for blogPersonally, I understand the desire to share photos with family and friends. My husband and I have mostly lived in other states than our siblings and parents and have missed out on getting to know our nieces and nephews as they grew up. And now they are having kids. The best way to stay in touch is by Facebook. I love seeing the newest members of our families, and my friends grandkids and the kids of my kids’ friends I drove around when they were younger. It’s their choice to make these available to me, trusting me to respect their privacy.

A few things to consider:

  • Some parents don’t post photos at all on the internet. Others are more trusting of human nature and post whatever they want. I would bet there many who haven’t given it much thought.
  • Be aware of the privacy settings you use on social media sites. I am most familiar with Facebook where you can set up lists of specific people you selected to receive a post. You can also change and audience after you post something.
  • Remember it’s possible for someone to download a photo, even if you disabled sharing. It only takes a couple of extra steps.
  • Be careful who you chose to share with. Maybe you connected with a friend at a recent class reunion and you’re now friends on social media. But you don’t know what this person has been up to or become in the intervening years. This even holds true for relatives and co-workers, unfortunately.
  • If you chose to post pictures of your kids with other kids, be aware other parents may not want their kids to appear on the internet.
  • Resist the urge to post locations of photos. This feature can be disabled on apps.

In my volunteer work with StreetLightUSA, I come across much information about the numerous ways that children are exploited. The internet makes this so much easier today, in many cases bringing the victim right to his or her exploiters/pimps/ johns. I haven’t even touched on the apps that make it easier for teens to meet the wrong people.

All this to say, be aware of what you do online, especially where your kids are concerned. You’re the first and best line of defense between them and the nastiness or even careless stupidity in the world.

More articles on this topic:

How to Protect Photos Online via Parents

Photos of Kids You Shouldn’t Post Online via Parenting

Children’s Online Privacy Protection Rule (“COPPA”) FTC

Putting Children’s Pictures Online: What Are the Rules CNN opinion

Family Photos Could Be Pedophile Targets and Facebook privacy tools via Battle Creek Enquirer

You Need What for Your Kid?

My daughter and son are adults now. Somehow, my husband and I managed to raise two well-adjusted adults through the 1980s and 90s without a baby monitor and with only four well-used Tupperware sippy cups and dozens of cloth diapers.

tupperware sippy

I’m friends on Facebook with some of their friends who have reproduced as well as young parents from church. It floors me to see the kinds of things available to raise kids these days.

I almost fell off my chair when I say this:grass mat and flowers

A plastic “grass” mat to air dry child feeding tools. One less than one square foot is just under $16.00. One just about a square foot is $30. Then the little plastic sci-fi looking flower things are $6 a pop to hold nipples or whatever. So we’re looking at about $50.00 worth of plastic here. Plastic, people. To actually change seasons, you can get a winter version in all white with gray twig-like structures.

This is how my kids’ feeding things were washed and dried.george-marks-woman-washing-dishes-at-kitchen-sink Then I’d just put the bottles/nipples/cups/lids any place they landed without falling on the floor. Sometimes I used nothing more than a clean dish towel.

And of course, I always smiled when leaning oner the sink doing dishes. My favorite thing in life.

(The woman is more from my mom’s mothering days than mine. But the technology was the same.)

 

Here’s a new baby swing. $120 worth of plastic that needs batteries or a plug to work. Of course, it does play 16 songs and includes nature sounds AND rocks back and forth or side to side.

new swing

We had one like the picture below. It’s metal with a cloth seat and runs on crank power that often wakes a sleeping baby up when you go to rewind it. It had a soothing click-click-click sound as it swung in its only direction. When the kid gets older she can practice hand-eye coordination by reaching for and grabbing a front leg and stopping the swinging motion. This means more parent/child engagement when you go and restart the thing and the baby smiles and chuckles to see you again.old swing

One of our favorite things was the jumper. I’m glad to see they’re still available. We had a doorway jumper like this:

Doorway-baby-jumper

Both kids loved it and they laughed and laughed as they jumped. Now you can get the hyper-stimulation model:Activity-baby-jumper

What babies NEED most are loving parents, food, shelter and security. That’s how infants have become adults for thousands and thousands of years. If anything else gets in the way, stresses parents to provide or care for, frustrates the baby in some unnecessary way or otherwise detracts from the peace of a home (which babies are known to do to begin with!), it’s worse than useless.

Modern baby equipment may or may not be better or even safer. Babies are huge business and new parents can be easily induced to feel guilty about what they can or can’t provide for their children. Good strong loving parenting is what every baby even needs the most of. Don’t let stuff get in the way.

I Want to Be Ready

I’ve had a busy writer week. Wish it was a busy selling week, but…

Here’s some things I did or that happened:

  • My interview was featured on a friend’s blog here.
  • I opened a Tweetdeck account, the usefulness thereof is still to be discovered.
  • As of this writing, I am 5 away from 300 Twitter followers. I’ve gained a bunche since I announced there I’m an indie author.
  • My book is scheduled to be featured here on Tuesday, 4/30.
  • I have liked/friended several authors.
  • I set up a meeting with Youngtown’s library manager to discuss writing programs for children and adults this summer.
  • I’m in contact with a wonderful woman who is helping me with research for What Doesn’t Kill You.
  • I made some nice progress on WDKY.
  • Added pictures to website and this blog. (I’m getting better at basic image manipulation!)

I don’t know where any of this is leading, if indeed anywhere. I read a blog this week–wish I’d saved it–by a man who was achieving what he wanted. He said he was ready when it happened because he kept working on it.

I want to be ready.

Needed: Procrastination Techniques

I’m looking for new ways to put off writing. I love writing but lately, since I published my first book, my mind has been wanting to take more time off. It’s like I was so focused on accomplishing that goal and once I did, I have failed to develop another all-consuming mental activity. Or, I haven’t renewed a prescription with the beneficial side-effect of the ability to focus better. Yes, there is such a pill!

I have started a list of different categories. Some of these activities are hated by me, but for some unknown reason, at times I find them preferable to doing that which I enjoy most.

Today’s technique will be the easiest. I’ll save the harder ones for later. Feel free to adopt any of these as your own to put off what ever you like to do.


Technique 1: Employing the Computer to Procrastinate

This might be every writer’s favorite, except for those who write by hand. I know several who do. I make lists by hand, and doodles. Not much else. This is not an exhaustive list, but I hope to have more to add in the future.

1. The Internet provides numerous ways to fritter away your life. I won’t include online games here because I don’t play.

a. Facebook–Of course. Do I have any new notifications on my personal page? My authors page? How about posting a status update. “My cat just yakked up a hairball.” No, not really. He’s snoozing with my husband.

b. Twitter–Tweet something writerly so people following me because I write will think I am productive and talented and so the filmmakers (how did I get filmmakers following me? Oh right–I mentioned I’m writing a screenplay) might think I’ll have a novel to adapt. One can hope.

c. Click on links on FB and Twitter. Lots of writing stuff, movie stuff, lots of stuff stuff.


d. Look for pictures of Michael Fassbender.

e. Check Kindle to see if I sold any books recently. Same for Smashwords and CreateSpace.

f. On Amazon, read excerpts of Fifty Shades of Grey (okay, I did that once–for a long time. I think they took out the most juicy stuff, which is really all right with me.)
.
g. Check Gmail to see if I have any new Twitter followers.

h. YouTube–start off with something of value then digress in any direction I choose–usually comedy and parody.

i. look for and download free e-books.

j. Check Goodreads to see how many more people signed up for my book giveaway.

k.Sign up for newsletters.

l. Look for a job.

m. Look for more pictures of Michael Fassbender.

n. Check regular email. This is a double one because then I can read the stories on the Yahoo feed. None so far have mentioned Michael.

o. Then there’s always good old fashioned research.

Wait-I have a new FB notification. Okay. Nothing exciting.

p. Watch movie trailers. Watch those with Michael several times.

q. Go to Huffpost women and read the sex articles.

r. Look for new movies to add to queue on Netflix (wish they had more Michael movies).

s. Write a blog post.

t. Go to Script Frenzy site and play with plot maker.

u. Tweak author website.

v. Look at blog stats to see if anyone read my last post.

w. Check bank account and clear away cobwebs to see if there is a positive balance.

x. check to see if I sold any more books than the last time I checked. Check to see how much I have to sell before I get a royalty payment

y. Go check the substitute teacher’s chatboard I used to frequent.

z. Look for another pic of Michael.

Next post will be how to use your computer without the internet to procrastinate.

How do you procrastinate online? Share, please!

(I promise NOT to mention Michael Fassbender once in the next blog post)

Overwhelmed

Must blog more

Working writers–as in those being paid to write–are supposed to blog now and facebook and twitter. I’ll try to get intentional about the blog but I doubt many people want to know what I had for lunch–dried out wheat tortilla wrapped around cheese and called a burrito in the school cafeteria. Besides, who has time? “Class, write 500 words while I figure out how to send this tweet on my cell phone. Can my phone even do that? Can somebody help me?”

We’re supposed to build a platform–make mine a diving one on a lake in Maine, please. And an audience. Well, I’ll try. So when you finally finish your novel that you work in around your real life, and you approach a publisher you can say, “I have a built in audience of a kabillion followers of Facebook and Twitter and my blog.

Well. I’ll try. Even though it takes away time from real writing.

I’d write more but I want to get back to my real writing because I have to go back to my real job tomorrow. I hope I can remember what I’d write about if I didn’t want to write.