Saturday, March 31, 2012

New Nurse helps Deb today

Madeline is a new nurse (to us) from England. She said training is different in the UK  but the basics are the same. She was really informative about the care of Deb's port.

Today ended much better than it began. We actually went to supper after a nap and took a drive. Deb's blood pressure was still low when we left  the clinic. She was given fluids in addition to the chemo.

Sunday morning is more chemo, then home, we hope!

Blessings!

ALERT-Sat am + UPDATE

Deb was asleep when I made the last post.

When she woke up she fainted. She is sluggish and needs hand holding to get around the apartment. I'm planning on getting her over to the clinic via wheel chair after she eats a bite and we get her dressed.

She probably needs some blood.

More later

Vern
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Update at 1pm CT
Deb has been checked out including full blood tests and an EKG. They could find no reason for the problem so they just began the chemo. Hopefully we will be done within an hour or so. I'll keep a good eye on her for sure! She is very tired.

Saturday-back in Arkansas + Hillbilly dispute

We are back at the Markham House with an early morning chemo appointment. We are scheduled again on Sunday and then hope to return to Ga. Sunday afternoon. Deb departed and arrived very tired.

Thursday night late when I tried to update this blog I found that our internet had gone south. We left home early Friday morning with a developing weather system across our route of flight. The pix of our Garmin GPS XM weather shows the route from Talladega,Al to North Little Rock, Ark.

Most of the weather from the top left corner (Alexandria, La) to the red and yellow blob near Columbus, Ms. joined hands and blocked our path. In fact, by the time we got to the left edge of the blob, it had expanded and become a severe thunderstorm over Columbus AFB, shutting down their operations. We heard the controllers putting the AF planes into holding patterns and considering diverts as the weather pounded them. We were able to zoom in on the satellite XM weather and pick our way between storm cells with barely a ripple. You can see our zig-zags on www.flightaware.com
Use our private flight tail number N353RV on the block on the left.

Because Gracie is so fast, we are able get through openings in the weather that slower planes might not be able to get through. This is a typical summer weather pattern. If it happens on future trips our best option is to fly as close to the bad weather as we can, land, and wait out the storm. Then continue to our destination.

Finally, the writer once said that 'everyone talks about the weather but no one ever does anything about it!'

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HillBilly Dispute-No kidding! This is for real

The main airport here in Little Rock was renamed a few weeks ago in honor of Bill and Hillary Clinton. It is greatly disputed in the local paper and TV news.

To put Hillary's name first was in the original plan, but that was changed when authorities realized that would be transliterated from Hillary-Bill Clinton International to  Hil-Bill Clinton International to Hillbilly International.  Anyway, the controversy here is interesting!

Blessings all!

Monday, March 26, 2012

Monday-More on what bad news looks like + weather

Grand daughter Evelyn right before her nap at home in Brussels. "No, I'm not tired!"
We flew home in Gracie after chemo yesterday.  A crowd of supporters met us and helped unload and put Gracie away. We were so tired! Thanks everyone!

Amanda, Jon, Eliana, and Parker met us also and brought us BBQ sandwiches. It is so good to be greeted by the little ones!

Several posts ago I titled the post 'Bad News.'

Good news would have been, 'go home, you are well.' So, anything less than that is a form of bad news. But, there are degrees of bad news. Our bad news caused us to go out to supper to 'celebrate' our news from Dr van Rhee: there are still options ahead for us. The worst 'bad news' would have been, 'go home, there's nothing else we can do.' Hopefully, we will never hear those words!

We are always watching the long range weather to plan our return to Arkansas. Right now Friday looks flyable. This watchfulness produces a tad of stress as our schedule and trips are so weather based. Here is a website you can use to look ahead at the weather picture.http://www.vansairforce.net/weather.htm

Sunday, March 25, 2012

Bridges-click for larger

Old Bridge Across the Arkansas River. The bridge connects Little Rock and North Little Rock
Another of the many bridges



Deb had a good day Saturday in spite of a long day. Sunday morning we are up and preparing for a 8 am chemo appointment followed by a return to Georgia!

Blessings all!

Friday, March 23, 2012

Friday Doctor's Report-More bad news

Deb's week of testing was carefully analyzed by Dr Van Rhee and he showed us the images of Deb's sternum lesions-note I used plural! The original bad boy has grown much more and now has siblings all around it.

He can't rule out the effectiveness of the experimental drug because no lesions have come up anywhere else. He said that it is possible that there are mutations of the myeloma cells.

Bottom line: One more cycle of three weekends of the experimental drug then more tests. The dosage will be maxed out and Deb will be taking a heavy dose of dex along with it. Additionally, daily max dosage of thalidomide will be taken. Normally that stuff drops Deb's platelets to dangerous levels, so we anticipate her not feeling nearly as good as she does now. Today she looks and feels great: except for the incurable cancer, she is doing fine! (chew on that a while)

If the tests in a month show improvement: we will continue as described above.

If she does not improve, the term used was 'salvage treatment.' We really do not like that term as it can be different experimental drugs, or perhaps another round of the original almost-kill-you three weeks of strong chemo followed by a third stem cell transplant. We do not know yet.

Saturday and Sunday we take the first rounds of the strongest chemo and hope to fly home Sunday afternoon. We return the next four weekends as described above.

Gina
We had a nice visit with Dr Nair's nurse Gina. Then we had meds to pick up at the UAMS pharmacy where we had a short visit with Carla, the pharmacist that has helped Deb so much. The folks here are so kind and wonderful!
Carla
I mentioned the river yesterday. Here is a poor pix I took today to give some idea.


 As the caregiver, I try to keep our minds vibrant and our spirits up. What better way to cheer Deb up than take her to several nearby estate sales to see that our junk is as good as their junk! We have a term in our marriage-a C.D.  (cheap date)

Early in our marriage a Godly couple demonstrated this to us by sharing that as faith missionaries they would always have a weekly date regardless of their finances. At times it would be a cup of coffee at the grocery store snack bar with a shared donut.

We learned that our happiness does not depend on stuff, but on relationships. Deb and I enjoyed the sales and even bought a few dollars worth of junk.

Blessings!

Now, for something beautiful, watch this short flick published by Alberta, Canada.
Alberta, Canada

Thursday, March 22, 2012

Thursday-all tests completed!

That's Deb's heart, NOT a baby!

Deb completed her last tests today in preparation for a consult with Dr Van Rhee tomorrow afternoon. We are eager to know what the next season of life will be like for us.
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Miscellaneous: How did Vern come to love flying so much?
As a child, Vern's father was an Air Force pilot. He would fly long missions which required him to take inflight lunches with him-a white shoe box sized picnic. There was always too much food and Vern's father would bring the leftovers home to Vern-chicken legs, apples, sandwiches, milk, juice, and those special Chiclets gum and flavored tooth picks!

So, from Vern's three-five year old perspective, flying looked like going on an airplane ride and eating a big picnic lunch. How much better could a career get?

So, how do Deb and Vern pass the time while flying back and forth to Arkansas? Well, there are no USAF inflight lunches available, but a sandwich, chips and an apple are typical fare on Gracie.



As a child, Vern's grandfather Foster ran a number of Sinclair Gas Stations. Vern spent a lot of time there with Dino, the green dinosaur mascot. The Sinclair name has long been gone from Georgia, but Dino is very much alive and well in Arkansas. Memories of childhood days at the gas station come flooding back!







Little Rock terrain is very interesting!
The city of Little Rock is split down the middle by a large river-the Arkansas River. It starts in Eastern Oklahoma and slices diagonally across the state of Arkansas from Northwest to Southeast.

From Little Rock toward the northwest, mountains dominate the landscape. Numerous lakes and wild rivers are plentiful. Wilderness-like landscapes are plentiful and beautiful. Numerous parks make these areas accessible to the public. Bears, deer. and turkeys make hunting popular. Some of the world's finest trout fishing is here.

There is one park just outside Little Rock named 'Toad Suck Park'. No one can really say where the odd name came from, but there is plenty of speculation that it is from the French explorers who came through the area. In fact, Petite Jean State park was named for a French lady who accompanied her love dressed as a man and who died on a hill west of Little Rock. see http://arkansasroadstories.com/toadsuck.html

The high river banks along either side of the Arkansas River makes for some incredible home sites. There are also dinner/play riverboats that are available on the river. There are parks along the city riverbanks. Over 27 years ago our family sat on these riverbanks and watched a fourth of July fireworks show, never imagining our present reason for being here.

 The Clinton Presidential Library is also located on the waterfront. So is Heifer International.  Deb and I have seen all the brochures and some exteriors but have done very little exploring due to Deb's poor mobility and feeling so weak and sickly so much of the time here.


As I said earlier, Vern often brings in chow for Deb. One of Vern's favorites is also the oldest food establishment still operating in Arkansas, Frankie's Restaurant. It is a cafeteria now.

Tuesday, March 20, 2012

Tuesday: bad weather and we are SOOO glad we flew out yesterday!

We are back at the Markham House in a severe thunderstorm / tornado watch area. It's raining skunks and turtles outside.

Before it got so bad, I took Deb for a little ride in the country. We enjoyed the blooms and green leaves.

When we got here yesterday I asked Deb how she felt. Being a Tennessee wordsmith, she told me that she felt ' as good as a petunia bear.' So, that reminded me of this photo, which I assume is a petunia bear!

Speaking of wordsmiths, we passed a small church sign yesterday that said "Pastor gratification service Sunday." We hope that's not really what they meant!


Normally I bring food in or cook for Deb, but she felt OK to go to breakfast this morn. We went the half mile to our favorite breakfast spot called Leo's Greek Castle. A castle, it's not! In fact, it is tiny and only has about five small tables. But, the food is good!

Leo's interior is intimate. We have had other patrons join our conversation freely.
 The community around the Markham House is called Hillcrest and is old small cottages and a few quaint old restaurants and shops. It is very similar to the Virginia Highlands area of Atlanta but not as large. Many roofs are red or green tile. Here is a cottage a few blocks from the Markham House.


The folks here are proud of their flag and display it widely.

Tomorrow has a lot of tests for Deb. She starts at 1:30 and has blood, urine, echo cardiogram,  MRI, PET scan, and a DWIBBS MRI. The day is mostly fasting.

Thursday is a PFT.

Friday at 2 pm we meet with Dr Van Rhee.

We do not know yet when we will come home.









Back in Arkansas and expecting >6.3 " rain in next 48 hours!

CLICK ON PIX FOR LARGER VIEW
Our plan was to fly out Weds morning and start medical tests at 1:30 until about 10 pm Weds night. Weather changed those plans and we came our Monday afternoon enjoying the sunshine instead of the lightning that was coming!

Before we left, Deb had a sunroom full of well wishers to pray with and encourage her. We had several more friends at Gracie to help us load up and launch. It was a beautiful flight out and Deb enjoyed the greening of the farms and lawns. When you fly the same route week after week, you get to know each cow's name and you can really see changes since last week.

Someone asked Deb why was she always smiling and full of joy. She said that "when you have been so close to death as I have, each new day is such a blessing."

That's Deb 90% of the time-happy, full of joy, appreciating every kindness. Basically a caregiver's dream girl! The other 10% doesn't count.
Gracie enjoys all the attention she gets from the sporty young jets

We are blessed to have a hangar here in Little Rock for Gracie to stay out of the stormy weather. Little Rock seems to have a lot of high winds and is a major thunderstorm-tornado area. In fact, the airport structures are just now having the repairs completed from the last tornado to hit the airport. Airborne winds yesterday in the traffic pattern were 55knots! On the surface they were 25 knots.
The convenience of general aviation: The car is waiting and we drive it up next to Gracie to unload. No lines, no security other than punching in a code to open the the gate.

The local rental car company always has our rental car waiting at the airport. We have particularly enjoyed the Mazda 6 model we have had several times. Because Deb and I are short, we are seldom comfortable in most car seats. Deb's seven fractured vertabrae still pain her even after the repairs. So, when you can be comfy in a car seat, it's a big deal.
Baggage cart in the elevator that we have ridden so many time.

Because we do not know exactly how long we are here for, Deb brought plenty of clothes.
Ursula and Jim from Austin, Texas. We lived there 3.5 years and have enjoyed chatting about our memories.

We bumped into classmates when we arrived at the Markham House. It's good to have friends greet us when we arrive at our second home.

Saturday, March 17, 2012

Visiting Warner Robins

First Saturday at home in a month! Feels so good! So good, we headed down to Warner Robins to visit those we haven't seen lately. Deb had not seen her mother Doris since Thanksgiving. Her brother Tim  in an even longer time. Vern's sister Kay and her husband Lee have not had an in-person visit in even longer.

Deb's azaleas are in full bloom. Deb loves plants and flowers so much!
Lee(left), brother Tim (middle), Deb (right)
Vern's sister Kay (right), Deb's mother Doris (middle), Deb (left)
Yesterday Deb was so weak she stayed in bed all day. Today, she felt much better. So, off we went on the two hour drive and everyone had lunch together. So good to reconnect.

Thursday, March 15, 2012

Happy Birthday Girl!

Deb gets ready to blow out the candle as Stephen makes sure she doesn't cheat!
Deb had a happy birthday because she got to spend the day with Amanda, Ellie, and Parker. Late afternoon Stephen, Jon, and Vern joined her for supper and a birthday cupcake! She was delighted to hear from so many of you today. Thanks for the encouraging emails and messages!

Looks like we will probably head back to Arkansas next Tuesday. Weds am weather doesn't look too good. However, it's still a long ways off.

Ellie and Deb
Parker with Vern

Wednesday, March 14, 2012

Home Again! + update + Birthday

Peggy is one of the APN 's (Advanced Practice Nurse) who helped Deb so much a few years ago. Because Deb is now back in the Chemo clinic, we are getting to renew old friendships.

Nadine Baxter is the APN who was when Deb 'crashed' several years ago.Nadine had spent years as an emergency room nurse.  She moved heaven and earth to get Deb admitted to the special seventh floor Myeloma section of the hospital. For the first time, Nadine told us that she thought she would lose Deb that day. I was thinking the same thing as I remember the horribleness that resulted in an eleven day stay in that special unit and Deb only being aware for two of those days.

Deb and I credit Nadine with saving Deb's life. Thanks, Nadine! 

View from 'the chair'
There are video displays all around to explain medical facts and to acknowledge those whose financial support has helped create this wonderful place.

John Jackson is a cancer patient who plays piano very well. He used to live in Augusta, Ga. His beautiful playing lofted throughout the twelve story atrium and has such a calming affect on everyone.

Sitting next to him enjoying the music was another new classmate from Warner Robins. This has been Georgia week in Arkansas!

You might notice that Deb looks great in these pix. As we flew home yesterday afternoon, she said that she had not felt so good since she was first diagnosed. PTL!

The ides of March {March 15 th if you are not into Shakespeare} is Deb's birthday!
 deb.darley @ gmail.com

Monday, March 12, 2012

Deb's New Cancer Situation


Deb's cancer situation:

Deb had more of the experimental chemo today which required fluids and premeds. Same schedule for tomorrow, then home via Gracie, we hope.

We saw Dr. van Rhee today along with his nurses. He carefully analyzed Deb's test results and images. He is able to call up MRIs, PETs, and DWEBS images and compare one to another. The technology is amazing!

What we saw was of concern. The cancer on the breastbone is very much larger than it was in January. One of our big questions for the doc was "is the experimental chemo effective against the myeloma?"  We still do not have the answer to that question. So, here's the plan: Complete chemo tomorrow, come home. Return next Weds and have a full day and evening of heart and lung tests, several MRIs, a PET scan, blood and urine work, etc. Then we meet Dr van Rhee Friday morning to try again to get the answer we seek after he is armed with more information.

Right now, there will be one of three possibilities.

1> Continue on the experimental chemo two days per week. Three weeks treatment, one week off.
2> Increase the dosage of the experimental chemo
3> Return to the three week chemo regimen Deb was on before the stem cell transplants. Carry chemo pumps around with us and probably loose hair.

Obviously we would like option one to work. Please pray toward that and definitely against option three.
Classmates work on puzzles in the waiting area. Waiting is a big part of Cancer treatment.
Checking vital signs is done often. Sitting and standing.
Nurses accessing Deb's port-a permanent device implanted in Deb's chest so medications can be quickly given and so the veins will not be over used.
Dr Barlogies' ride. He is NOT a young man, but his ride is!
We were with three classmates from Macon, Georgia today. On the Markham House shuttle this evening we had two ladies from Pearson, Ga (between Valdosta and Waycross) The patient has been coming here for six years. Three Jewish men from Toronto were speaking to one another in Hebrew and Vern enjoyed chatting with them about his exchange trip years ago with the Israeli Air Force. Shalom!

Arkansas Digs

The third floor balcony.We've stayed inmost of these rooms.
There are one and two bedroom units. We take singles.
Split bath

The living room and kitchenette
Laundramat on the second floor
Cereal on  the breakfast bar on the third floor
Pastries on the breakfast bar

Saturday, March 10, 2012

Saturday Return to Arkansas

River 'oxbows' are old river beds. Note how many are in the top third of the pix. Each strip is a former river bed.
Barges being pushed down the mighty Mississippi by a tug boat. Somehow they miss most bridges and make the sharp bends.
Green fields were much more evident this week. Spring is on the way!
The area of North Little Rock Deb loves is called Argenta. There is a 'Starving Artist' Restaurant she enjoys. We stopped in for a sandwich before heading to the chemo clinic. We love these old screen door paintings. We asked the price and they are only six thousand each! Guess we will have to leave them in Arkansas.

Vern's favorite screen door painting
Deb enjoys her sandwich
The oldest drug store in Arkansas is across the street.
Electric trolleys ply the Argenta area. Someday we hope to get a ride.
Well, the day ended up a disappointment. After traveling here for the experimental chemo, it was not available in spite of the best efforts of the staff. We have to wait until Monday am to see what our doctor wants us to do.

Our return to Georgia may be delayed if the doctor wants Deb to get it this week.

In everything give thanks and that's what we are doing!

Blessings all