Saturday, July 18

Summer Bible Studies

There are two Lifeway online summer Bible studies that I am doing this summer and fall.  These studies consist of
  • purchasing your book
  • doing the weekly Bible reading and question/answer pages
  • watching the short video from the workbook's author.
After watching the video, you can leave comments and read the comments, so it is almost like being in the group study with them in person.

I'm doing Seamless by Angie Smith first, along with a friend that I get together with in person.  Click the image to get started!  In the Fall, I plan to do What Love Is by Kelly Minter.  Click that image if you'd like to start that one now.

I was born and raised in a church and I have been a Christian for 40 years.  The Seamless study is still teaching me new things.  That's how the Spirit of God works -- always revealing new things when you need them most.    Seamless brings the entire Word of God together in chronological order and we dig into why these particular historical stories are included in God's Word.

If you are looking for a new study or if you enjoy building relationships and communicating through the web, try one of these!  You can go at your own pace and watch the videos anytime you'd like.

Thursday, June 18

Win a Pair of Adlens Sundials Adjustable Sunglasses

Summer Fun in the Sun

Package Give Away

$58 value includes Sundials, sunscreen, beach towel and a magazine.

Contest is over, Fern has won the package.
Thanks, Lois, for your comments as well.

Simply leave a comment about what you do for Summer Fun in the Sun and you will be entered in the random drawing for this Summer Fun Package donated by Adlens.  You must be 18 years of age or older to enter this contest.

Winner will be chosen on Sunday, June 28th and notified in a blog post on Monday, June 29th.

I was approached by Adlens Sundials™ to review a pair of adjustable sunglasses, a concept in eye wear that I didn't know existed.  I was very intrigued because I currently use prescription bi-focals, readers, sunglass readers and sunglass bi-focals.  If I'm outside, I'm wearing sunglasses -- I'm one of "those" types of people.   I had perfect vision until I hit 40 and it's been downhill every since.

With Adlens Sundials™ you can see up close, into the distance and all around you, at the turn of a dial. These sunglasses can instantly go from poolside readers to longer distance glasses, from -6D to +3D diopters.  They have UVA and UVB protection and a single pair can be adjusted to improve vision for 90% of eyeglass and contact lens wearers who do not have astigmatism.

Within hours after receiving my package in the mail, I took the Sundials out for a trial.  I thought they might look goofy, but they didn't.  (I'm thinking about purchasing the John Lennon Sundials and they really might look goofy, but fun.) 

I loaded my kayak and jumped in the truck.  The power of each lens is varied by moving two wave-shaped polycarbonate plates via a dial on each upper corner of the glasses.  I reached up and twirled the dials into place so I could see far in the distance as I drove to the lake.  My eyes are different so I adjusted each lens accordingly.  That was a big advantage of these sunglasses over regular bi-focal sunglasses. 

I quickly discovered these are not good for driving.  I could see things far away, but the closer objects were blurry.  I set them aside and wore my regular sunglasses.

Once in the kayak on the lake, I adjusted each lens again for long distance and began paddling.  Again, I did not like using these for long distance.  No problem.  I switched again and paddled out to watch the sunset and read my free magazine.

The Sundials worked great for reading.  I adjusted them once and read for about 30 minutes, watching the sunset, on the kayak, in the lake.  You know it.  They were great.  Every now and then I would raise my head, peek at the sun and smile.

But for the paddle back to the dock, I ended up wearing them like this:

So I could see my paddles and boat and also see into the distance. 

A week later, I took the Sundials on a cruise and let a thirteen year old use them.  He loved them.  He currently wears prescription glasses, but could not afford prescription sunglasses.  I let him try the Adlens Sundials and they worked well.  He was so happy.  

Another good reason to shop Adlens:  Currently, for every pair of glasses purchased from The John Lennon Collection or Hemisphere Sun and Optical ranges, Adlens donates a pair of sunglasses to someone in the developing world through the Buy One Give One Program.

Summary:  I will not wear Sundials kayaking or driving, but will wear them while reading by the pool or ocean.  I found that I didn't want to take time to dial them often.  Sundials are great for someone with regular prescription glasses who does not need bifocals.  My pair was very lightweight and comfortable.

Also?  If you win the prize, wash the towel alone the first time.  A lot of white fuzz came off it and got on my other clothes.  It's really soft though.

Disclosure:   I participated in this campaign for Adlens. I received a free Summer Fun in the Sun package to facilitate my review.  Adlens is also providing the winner's Summer Fun in the Sun package at no expense to me.  All opinions stated are my own.

Tuesday, June 9

ASCO 2015 MPN Recognition and Progress

The American Society of Clinical Oncology Conference (ASCO) was held in Chicago last week, June 3 - 7, 2015.  Giant leaps were made in the presence of and discussion of blood cancers at this conference this year - myeloproliferative neoplasms (MPN) such as the one I have - Polycythemia Vera (PV).  Historically, this conference has focused on tumor cancers and hasn't included much on MPNs, leaving it to the American Society of Hematology conferences.

This is a big step for us rare MPNers and I've been watching the conference news reports as they trickle in.  The biggest news came from Baxter/CTIBiopharma on their Pacritinib data, a drug for myelofibrosis patients with low platelet counts.  (I have the opposite problem, high platelets.)  Also the conference reported information on allogenic stem cell transplants for MF.  Scroll down for links to some articles from the conference.

In addition to new drug trials, researchers have started combining drugs and watching intently for effective treatments.  The key to the drugs we have so far is personalized treatments.  Some patients adopt a wait and watch attitude while some are more aggressive and proactive (me).  One patient at the conference reported, "I feel like a thorn in my doctor's side."  Exactly.  Me, too.  It's difficult to feel that way after appointments and many times I want to give up and say "whatever."

Much research focuses on trying to reverse the disease process, in other words, trying to keep it from transforming to MF or Leukemia.  And secondary to this, is trying to create an acceptable quality of life.  That's pretty much where I focus and push my doctor.  I'm a HUGE believer in quality of life over quantity.

"The process of scientific advance with patients is a little bit like watching sausage being made -- ups and downs.  For some, pulling back that curtain or that process can be too much information, but I do think the partnership between physicians and patients, particularly in these kinds of diseases, really is key.  A lot of the advances have really been made by patients being so generous with their time or involvement in trials, or a lot of their bloodwork to be used for research -- All of these key advances have really come from those sorts of efforts."  - Dr. Ruben Mesa

MF and Leukemia are the biggest fears of most patients with an MPN.  PV or ET, two of the four MPNs, can evolve into MF or Leukemia, but it doesn't happen to most of us.  It happens to under 10%, maybe around 3% if I remember correctly.

Also at this time, those of us in the MPN world are celebrating the tenth anniversary of the JAK2 discoveries, chiefly the JAK Inhibitors.  I may not have this perfectly understood, but here's my understanding.  The mutation of the JAK2 stem cell results in this rare cancer.  Therefore, finding meds that inhibit the mutation are a better treatment than simply slowing down the cell production.  The JAK2 mutation is how I was originally diagnosed via a bone marrow test in a small doctor's office where I was dazed and confused, surrounded by struggling chemo patients and loving care givers.

I am currently on an oral chemotherapy called Hydroxyurea.  We check my blood counts every other month and adjust my dose.  It's all a numbers game right now for me.  When my blood counts are in a certain zone, I itch like crazy.  In another zone, I am tremendously fatigued and fight foggy thinking or "chemo brain."  In another zone, I suffer bone pain.  All my life, my parents, husband and doctors were helping me try to find out why I suffer "leg aches."  As a child, we called it "growing pains."  I now know that a lot of it is bone pain from this disease.  When the blood counts are in another zone, I get restless leg syndrome and can't sleep well.  And always, I have abdominal pain; in fact, that is what took me to the doctor in the first place.  We think it is spleen related, but not sure because my spleen isn't enlarged enough yet to show up on the MRIs.  Etc. Etc. Etc.

Most hematology/oncology doctors don't know much about this and have very few patients.   When my doctor was hedging some of my questions, I asked him if he currently has any other PV patients.  He hedged his answer and basically admitted he has had very few in his career.  When he first diagnosed me, he said it wasn't cancer.  After my research, I asked him if it's cancer and he admitted yes.  At first, he told me 8 years is the average life span after diagnosis.  After I did research, I saw that this information is outdated.  Currently, the average life span after diagnosis is around 20 years.

Upon my diagnosis, I visited specialists at Mayo and Duke and together came up with a game plan which I brought back to my small town hem/onc.  I regularly check the Internet for more information and have joined several support groups.  Everybody is just as confused as I am.  But the camaraderie is tremendous.


MPDchat - If you or a family member has an MPN, join this Google Group, there is no fee to enter. By far, this is the best "support group" I've found.  Top level questions and answers.

Allogenic transplantation for myelofibrosis:  Final analysis of a prospective study after a median follow up of 5 years

ASCO 2015 - JAK Inhibitor Pacritinib Proves Effective for Easing Symptoms of Myelofibrosis

An ASCO Primer:  Which Drug Makers are Pursuing Which Kinds of Therapies

Watch a Roundtable Discussion on MPNs

Sunday, May 24

Eosinophils and Basophils Explained in Myeloprolific Neoplasm Blood Disorder

In a previous post, I mentioned for the first time that I have polycythemia vera, which is a myeloprolific neoplasm (MPN), which is a mutant stem cell in the bone marrow that results in the overproduction of any variety/combination of blood cells.

On of the very, very minor effects of this is pruritis - terrible itching.  If you know me, you've seen me itching like I have fleas at times and it's embarrassing sometimes and annoying all the time.  It is due to increased histamines, similar to an allergic reaction, due to increased Eosinophils and Basophils in the blood count.

This video is the best explanation I've found, so for you fellow MPN people, take a listen.  Also, allergy sufferers, this will help you understand your reactions better:  Dr. Susan Leclair.

Thursday, May 21

Canoe Trail Aiken State Park, Edisto River, South Carolina

May 2015:   Winds:  12 - 14 mph   Water Level:  7' 
South Fork of the Edisto River -  1 3/4 mile from launch to take-out dock
75 minute trip by experienced kayaker going slow

I decided I was ready for my first solo kayak trip.

I have polycythemia vera, a rare blood disorder with a twenty-year shelf life, and was coming off a normal three-day fling of fatigue.  I needed fresh air, sun, water, birds, mud and snakes.  In other words.... no humans.  I've learned that if I just roll with the fatigue when it hits, sleep 12 hours straight, take some time off work, it'll pass with little notice..... and a little lovin' care by my daughters.

Choosing a waterway with which I am well familiar, I checked the weather, the wind and the water levels.  I notified the adorable park ranger (so young!) that I was headed out alone.  I asked him about the navigation and he assured me it was typical.  No surprises this trip.  He was right.

I put in at the top of the canoe trail and the water level was hovering below 7 feet.  I prefer 8 feet, but felt confident 7 would be deep enough for the submerged logs and shallow enough for the low trees.  An ice storm hit a couple winters ago that made the water impassable.  My husband and I navigated the jon boat while our good friend Doug ripped a trail through the river with his chainsaw.

At 7 feet, I had some stump-jumping to do.  The first one caught me off guard and I approached it at an angle.  My adrenaline performed magnificently and I got myself straightened out after only two or three seconds of being out of control.  The second and third jumpers came as no surprise, I hit them straight on and wiggled my way across.

I remained silent most of the trip so I could see and hear the animals au naturale.  At times, I made some noises before passing under low hanging branches that might contain snakes.  I saw one snake and he let me pass comfortably.  I heard three other snakes plop into the water from their lofty branches several feet before I passed under.  Always be aware of the snake on the low branch that might jump into your boat.

The 12 - 14 mph wind.  OK, let's talk wind.  12 - 14 mph feels nice, a cool breeze.  However, when you are alone on the water, floating under broken tree limbs that creak as you pass by..... 12 - 14 mph feels like 50 mph.  I expected to see Jim Cantore around the next corner in his rain gear, dangling off a branch shouting at me to evacuate, for crying out loud EVACUATE!

But that didn't happen.  12 - 14 mph winds are perfect for a kayak trip on the Edisto.  If you paddle on the lower part of the Edisto, be sure to check the tides.  There's no reason to paddle against the tide both ways unless you just want to..... or plain don't know better.  (ask me how I know this)

I saw one other boat on the water, a lovely couple fishing in a jon boat.  As I paddled by they asked if anyone was upstream behind me.  I smiled, "No, not a soul," thinking they'd have great fishing possibilities.  Then I heard banjo music.  I thought how stupid I was - I should have said, "Yes, my big, burly husband and his big, burly friend are right behind me with their big, burly pistol."  Instead, I just paddled faster.

Perfect water levels for both canoe and kayak are around 8'.   There are a few downed logs that you either need to go under or over, depending on the water level.  When the level prevents either, the park will close the trail.

The park has times when they rent canoes or kayaks and give you a lift to the put-in while you leave your vehicle at the take-out.   Call ahead.  If you have your own boat, you can go beyond the park's take-out, but the next road access is about 15 river miles down at Keadle Bridge.  If you decide to go past the park's take-out, be sure to let the park rangers know your float plan. FYI, I've put in at Keadle Bridge and paddled upstream for 45 minutes or so.  As of late June, 2015, I could not paddle down stream at Keadle due to a fallen tree.

The Edisto river is endangered.  To support the life of this blackwater river, join the efforts of Friends of the Edisto or Edisto Concerns.

The Aiken State Park Canoe Trail
Aiken State Park

Blackwater Festival 2015 is coming back to Aiken State Park on Saturday, June 20th, 10 - 4.  Music, BBQ and more.  Come out to visit others, support the river and float down it if you'd like.

Sunday, May 17

I'm Back and Under Construction

Just over a year ago, I lay down my pen.
I had nothing more to share.
Nothing more to give.

I boarded up the windows of my heart,
secured plastic protective coverings over the breakables in my consciousness,
descended into the storm cellar of my psyche.

Ready to return,
I will begin blogging again.

This blog is under construction.  The name, the background, the categories will change over the next few months, but I will start writing again now.  The new blog will focus more on Travel and Product Reviews.  Stay tuned!

Friday, April 24

Marine Railways, Another Little Piece of History in Savannah, GA

Sasser's Marine Railway on Wilmington Island across from Thunderbolt. 
On the outskirts of Savannah, GA.

We sat up in the wheelhouse talking for hours the night before, waiting out a thunderstorm, wondering what it would feel like in this storm if we were on the water instead of the rails and, more importantly, wondering how I would climb back down this 30’ ladder with my fear of heights.  I seriously thought we’d have to invent another way down.

 (see the little boy staring at the boat?)
The commercial shrimp boat is an enchanted thing.

When I see these old trawlers, especially the wooden ones, I feel like I have stepped back in history, maybe even into a fairy tale. 

The tall outriggers at the ready.  The beautiful nets waving in the breeze, the old wooden doors, parched, cracked and two toned.  Even the tug-boat shape thrills me. 

I stare at the boat and dream tall tales of pirates and perfect storms and stowaways.  My imagination goes full out.  I have to be pulled away or I would stay there all day.  But then, something else caught my attention.  The rails!  Marine Railways -- who knew?!  I love old things like this and had to learn more.

Miss Pollyanna was brought down from Beaufort, SC in a high sea for the purpose of general maintenance up on the rails.  Marine railways became favored over a traditional dry dock in the early 19th century and are now on the decline due to environmental issues.  The rails extend into the water and run at an incline for a couple hundred feet.

On a high tide, Miss Pollyanna floated into the cradle and was drawn up the railway by a winch .

The winches hauled her up the rails to hover a foot or so off the ground so Bobby, Bernie and Pee Wee could scrape off the barnacles.

When I arrived, they were power washing her down so they could paint.  I averted my eyes.  It didn’t seem right to be all up in her business.  Miss Pollyanna stood proud, but there’s only so much a girl can stand.

There's a handful of marine railways still in operation, most of which claim to be the oldest operational marine railway in the country or something equally grand.   The original ones used horses to pull the boat, then steam engines.  This engine (2 photos above) is I-Don't-Know-What.  It.'s a beast.  If you know how it runs, leave a comment.   Isn't this stuff great??!  I love it when I discover new very old stuff.

Friday, October 24

Danny DeVito in Steal My Girl Video with One Direction

The tiniest flicker of hope for humanity rising up out of the ashes and smoke of what America used to be has brought me out of my hibernation for a quick gasp of this beautiful, pepperminty-cool, life-sustaining fresh air before it dissipates.

Any guesses?

It'll surprise you.

You can let your kids watch it.

It's Steal My Girl by One Direction. 

Actually, it's the video for the song.

Before you watch it, let me comment that it is a wholesome love song you haven't heard in a few decades.  It is encouraging and sweet, and will elevate your spirit for high school sweethearts worldwide.  It is naive and pure with no vulgar language or scenes, it doesn't objectify anyone.  And it is creative.  Somebody, somewhere put on their creative hat and resisted the urge to paint their canvas with the filth our artists have been using with lazy lasciviousness recently.  Bravo!

Wednesday, March 26

Thursday, February 6

Foggy Thinking, Lethargy

In the hormonal madness called menopause, I often find myself in a fog of confusion, staring blankly, wondering what I am supposed to be doing.  I know I am supposed to be doing something, something more than just standing in the middle of the kitchen or driving around town.   But without a sticky note To-Do list or electronic calendar to look at, I’m at a loss.
Feeling less-than.
In a fog.

It is refreshing to me, at this stage of life, to have the gps, something mothers and grandmothers before me didn’t have to help them muck through.

The soothing voice, confidently telling me “Head West!!”   My shoulders straighten, I lift my head. 
I’ll head West.!!
That’s just the thing to do.

That soothing voice breaking down my life into step-by-step directions is very appealing to me.  I turn it on sometimes when I’m not even going anywhere.  I just want to hear someone who knows what they’re doing.  Someone who feels confident and full of hope.....

Monday, January 27

10 Unique Valentine's Ideas


It's time now to start your DIY Valentine's Day projects and I've gathered some of my Internet favorites for you.  Valentine's Day used to be my favorite holiday; hearts, my favorite shape.  I used to make cards smothered in Victorian lace, glittered hearts and gooey love cliche's.  But this year, I'll let you do the work.

My #1 Favorite Valentine's Gift Idea for 2014:
Cookie Dough......

Thursday, January 23

Why We Love Venice (And You Should, Too!)

We visited Venice in May of 2012.  We spent a delicious, rainy, exhausting, exhilarating 2 days in Venice and wished we had more.  With the not-so-friendly Venetians and the way-too-many tourists, it's not a place to which I want to return more than once.  But it's a place I insist everyone must see.

Seven Top Reasons We Love Venice (And You Should, Too!)

1.  Cars aren't allowed in Venice......