Saturday evening in Georgia

Deb has had a week without chemo so her tests next week will be accurate. After the trauma of last week, a little recovery time has been delicious! If it were not for that nasty old chemo, who would want to take chemo anyway???

So, why not use a little of that new-found energy to be a grandmother? So, off we went for Deb to spend a few days with Ellie and Parker. I dropped Deb at Amanda's and went back to work until Friday evening when I brought Deb home again.

Thursday evening Vern got a call from our myeloma classmate over in Athens who is a Doctor teaching immunology. Don has a mirror case of myeloma to Deb's and we have had the same doctor and meds. Don had been reading up on all the medical literature and wanted to update us with what he had found.

In a nutshell: there are over 50 myeloma meds in testing right now. The human genome project at UAMS is now identifying the impact of meds on the genetics of myeloma. Our doctors are the most prolific writers and researchers on multiple myeloma. It is now imagined that someday soon Myeloma will be finally classified as "curable."

It was good to get such a good report from a fellow patient who has the ability to understand the literature.

Now it's time for us to start packing for our Monday morning departure in Gracie. Between now and then, a weather front of severe weather will pass us, hopefully leaving clear skies for us on Monday. As usual, you can track us on www.flightaware.com and use the tail number N353RV.

It is our hope that the tests will reveal that Deb's cancer has responded to the more intensive chemo and that we can return with good news.

Blessings all!

The current "Big Picture"

Deb spent much of this week at the local hospital getting blood and platelets. Until a few days ago, she was taking 3x the dosage for 2x a week in an attempt to put a halt to the cancer that had seemed to be increasing in size at our last tests in Arkansas. Because of the tough chemo, her platelets and blood along with energy all went south. She has mostly rested for the past weeks.

So, this week has no chemo so that when we get to Arkansas on the 19th for a week of tests the chemo will have cleared out so tests will show the status of her body, not the chemo. It will be our last visit with Dr Nair before he changes positions. Dr Van Rhee will be taking Deb's case. Dr Nair is from India and Van Rhee from Holland. Both are excellent!

Deb's body has limitations but her mind is still planning projects! She has so many household improvements whirring around in the gray matter. We check them off  as completed a lot slower than they are thought of.

Someday?

Angels-all shapes, sizes, functions

Angels Al and Russ would rather be on their sailboats but instead have been in our yard helping get some of Deb's projects checked off. We've had this garden gate and pavers to make an entrance from the driveway back to Deb's sun room. The project has been languishing on Vern's ever-increasing to-do list. Al and Russ are gifting us with completion!

Throughout the cancer experience we been served by food angels, driver angels, pilot and mechanic angels, house cleaning angels, prayer angels, etc. There has been no end of love shown us.

To all who have prayed, served, encouraged, etc., we thank you! Blessings all!

Tuesday: Platelets-17 : Deb-Priceless!

I took Deb to the local hospital for her six hour infusion this morning. She could hardly walk unassisted. Her platelets measured at 17; so drops of about ten points per day seem to be average. Fortunately, last night was the last of the really bad chemo for a few weeks so recovery may be in the wings.

(top) PA Caroline checks Deb's condition

(Below) Our faithful nurse worked hard to do the multiple blood draws through Deb's port. In spite of multiple attempts and a change of needles, the blood would not flow. Then Deb prayed and the nurse said amen. The blood started flowing!  PTL!

 Deb will have to have another transfusion tomorrow and then back on Friday.

Speaking of wings, our son Trey passed his private pilot check ride in Brussels, Belgium yesterday! Congrats Trey!  That makes three generations of pilots in our family. All named Vernon!

Friday Night

Blood platelets are important! They keep you from bruising, bleeding in your mouth, and give you some energy! Some energy Deb has not had for a while!


Today was the second visit to  the hospital this week and Deb's platelets were so low they gave her an IV and scheduled a transfusion for Saturday. So, two hours in the chair  tomorrow. Tuesday, a six hour treatment is scheduled. At the current rate of drop in Deb's platelets, she would have gone negative before the Tuesday IVs had we not scheduled the Saturday appointment.


So, here we are! 

Sunday update after a week of twice-weekly triple strength chemo

Deb spent most of the day in the sun room resting. In fact, she spent most of the week there. In reality, most of the past year since it was completed! We are so grateful for those who helped us complete it last year! How different Deb's comfort has been having it as a personal retreat.

Deb's blood platelets dropped significantly this week which means her strength ebbed as well. We are anticipating blood transfusions perhaps next week.

Although church attendance has been our lifelong practice, we have seldom been able to attend services for some time. Today our friends Dave and Cathy Hicks came by after church and brought lunch. We had a wonderful time hearing about their three month trip to India. Before they left, we had a prayer time and communion together.

We are blessed!

Monday visitors

Gayle and Roger came by to 'sit a spell.'

Sunday- a much needed day of rest : Bad news from a classmate

So glad our maker prescribed a day of rest because we needed it! Today included a grocery trip, restocking the frig, fixing some food, unpacking, a few loads of laundry, a visit from Vern's dad, getting organized for the new week, and a nice nap. Then a little football for dessert!

We got some bad news today. Harold Horton was found dead in his recliner yesterday morning. Back in 2010 Deb and Gwen lived a parallel time in the hospital with very similar issues. They were also our next door neighbors at the Markham House. Deb survived but Gwen did not.  Since then, Harold and I texted and called periodically.

Harold had a large farm in West Tennessee near Deb's ancestral home and raised his own meat, raised catfish, and gardened. Harold was probably the most self-sufficient man I ever knew. He was also a humble kind hearted man who missed his Gwen terribly. I think he grieved himself to death.

We are better off for having known Harold and Gwen. They will be missed.

Getting Home on Saturday Afternoon : NOW AT HOME

As I type there is a tornado warning in Georgia. We filed a flight plan to takeoff at 1 pm CT (2 pm Ga time). The terrible wx should have moved out of of the area by then. Otherwise, we'll land short of Atlanta in better weather. I'll check weather again before we get into Gracie. If its still bad, we may return to the Markham House for another night.

My Pappie always said  "it's a lot better to be down here wishing you were up there than up there wishing you were down here." We agree!
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5:30 pm
We arrived home safely and were greeted by about a dozen of our airplane friends who made short order of unloading and getting us refueled and in the hangar. We have unloaded the car and are laying around the sun room. Praise the Lord! No place like home!

Deb woke up starving so we went to a tiny local eatery called Leos. It probably only seats 10-15 folks and has had no improvements in appearance since the forties or so. The food and service are good though!

Results of Arkansas Tests

Bottom line:
Both Deb and I are encouraged. It certainly could have been worse! We are staying in Little Rock tonight because the weather is awful for flying home today.

Details:
We arrived early for our appointment with Dr Van Rhee and were soon seen for the typical labs before seeing the Doc. While waiting on Deb's blood pressure to give a reading (always a problem), Vern saw Dr Nair in the hall and waved. He came to greet us and we asked if he was still our Dr, or had we been swapped to Dr Van Rhee. He said he was still our Dr. and would swap that appointment with Van Rhee.

The nurse took us to our examining room and soon Dr Nair came in and began getting an update from Deb and Deb's tests.

For the technically interested, Deb's IGA and Lamda Light Chains are going up but are still within the normal range. Her PET looked worse but her multiple MRIs looked better. Dr Nair said "I'm a bit worried about those climbing markers. The disease is trying to come back."

So, the plan is to increase dosages of chemo upward. Thalomid (Thalidomide)is being replaced with much higher doses of Revlamid. Velcade will now be twice a week. Labs will be sent to Arkansas more often. We are to return in a month and have all the tests we normally have plus another bone marrow and a gene array.

In other words, Deb is about to get her butt kicked by these increased chemos!

The weather made coming home today out of the question. We will look at it in the morning and make a decision. The front causing very low ceilings and visibilities in both Arkansas and the Atlanta areas stretches all the way from Colorado to the Carolinas.

Before he left us, Dr Nair  told us that he will be leaving UAMS in March for private oncology practice. His nurse Gina (Holy Spirit tatto on her wrist) told us she would be retiring when Dr Nair leaves. We will miss them both and wish them well. Nurse Tina who encouraged Deb at her lowest point too another job a while back.

Thursday am

Today is the test analysis and processing day. Those results will be presented to us tomorrow morning. That's when we find out if there is a change in our treatment plan and schedule. Of course, our desire is to stay on the original 3 months at home / 1 week in Arkansas routine.

Yesterday we got a phone call for a long-time friend who was brokenhearted in telling us that his wife had been diagnosed with cancer. I identified so much with his pain as he grappled with the news. It is a helpless feeling. I prayed with him and tried to encourage him as a fellow caregiver.

A fellow classmate has published a small hardback book on his battle with Multiple Myeloma called Rebirth in Little Rock by Victor R. McLean of Montgomery, Alabama. Deb and I read it and it pretty much describes our lives the last few years. If you are a seeking information about Multiple Myeloma or treatment here in Little Rock, his book is a very concise narrative on what lies ahead. His 87 pages summarize our parallel experience without you have to read our huge (over 6" thick when printed out) blog with its rambling style and intermingled family stories.

The special MRI yesterday, which we found out is a new procedure to determine the bone's marrow-making ability and health, did not take so long and allowed us time to take a ride in the country.

Northwest of Little Rock along the Arkansas River is somewhat mountainous with trout streams and beautiful scenery. South of Little Rock is where we headed yesterday. In only a few moments we entered typical Georgia-looking piney woods. Deb felt right at home since she grew up in South Georgia where pines abound. Afterwards we had a rare event for our time in Arkansas...we went to a movie!

This time out of the hospital/Markham House environment has a purpose..stress reduction! Nothing like a little fresh air and new scenery to help one 'cool their jets!'

Tuesday evening... Overview

Tuesday tests are now over. Between tests we went to Deb's favorite Brazilian restaurant for lunch after a long fast. Deb is now in her PJ's on the couch watching the news and relaxing after a long hard day. Amanda and Ellie just called to say good night to Mimi (grandmother).

We had a nice visit in the Markham House office with Cynthia, the manager, Latoya, and Gino. We may be clients but are treated like family. 

Today we got the news that our classmate from Thailand passed away. Mrs P was 82. You can see her pix on posts from last year. Reports are that her husband returned to Thailand to be with her elderly mother(age 102) and aunt (age 106), who still go to market each day with their caregivers. Wow!

We met a new classmate named Kim and her son Brody from Louisiana. Brody is fifteen and immediately wanted us to know they live in northern La. and do not catch alligators! Guess he's a little sensitive about several popular TV programs.

Kim's case is almost a mirror image of Deb's and at several waiting rooms Deb and Kim got to compare notes. Kim has had myeloma longer and also has had a similar setback while on remission. They exchanged contact info and plan on becoming regular communicators.

Tomorrow Deb has a newly-developed MRI that the medical team here has invented. We saw the odd name on the schedule and inquired with our MRI staff Troy. Troy has cheerfully cared for Deb the whole time we have been coming to Little Rock.

Deb on the hotel van reading 

Tuesday-Tests begin today

Deb's been fasting, so I slipped off for a cup of coffee while she was still sleeping. She's dressing now as we begin 2 days of tests. So, first out of the gate is a registration process, then blood and urine tests. Mid morning, PET, then MRI. Tomorrow, more MRI's. Then Thursday is a day off while the tests are processed. At 9 Friday, we sit down with the doctor to decide what's ahead.

Yesterday we sat on the bed and listened to some of our favorite music on Youtube.com from early in our marriage. Mostly Gaither Trio. Danny Gaither had five years of lymphoma before dying. We now understand his last days so well.

The music was so comforting. Songs like: Something Beautiful, Because He Lives, The King is Coming, He Touched Me, and a favorite encouraging song, The Church Triumphant.

At my morning coffee, I again bumped into our classmate from Colquitt, Ga. She has been here continuously by herself for over a year except  for two weeks at home during Christmas.

Each time we are here and I pass by certain rooms, I have flashback memories to what we were going through when we stayed in that room. Today I passed by 305, the first room we stayed in when Deb came out for her comprehensive eval. Amanda came with us and Deb was in terrible pain before six of her seven vertibrae were repaired. I was a zombie and we would not have made it without Amanda's clear-headed help and thinking. Seemed like the first time I ever remember being totally helpless.

Arrived safely in Little Rock

We came out Sunday rather than the planned Monday departure.

Today the skies were extremely clear and visibility was more than forty miles.

Headwinds were a different story! Sixty on the nose for part of the trip. Ground speeds as low as 115 even  though we were flying thru the air at 185-190 mph burning about 13 gallons per hour avgas.
So, the normal 2:15 trip took 2:55.  Even so, what mode of transport would get us here more conveniently and quickly? None I know of!

Arriving Sunday instead of Monday presented another issue: Our rental car was not available today. An friendly off-duty fireman, Adam,  brought us to the Markham House where we checked in and got a short nap.

It sure reduces Vern's stress level when I have gotten Deb here safely and comfortably.

Heading back to Little Rock + family sendoff

Three plus weeks ago the doc asked us to come back in a month due to questionable test results. He said "come prepared to stay one to four weeks."

Here's a short video of where we go and virtually everyone shown has helped us and are our friends.http://myeloma.uams.edu/?id=9108&sid=28

Here's the Myeloma link in case you want to learn more. http://myeloma.uams.edu/

We were heading back in Gracie on Monday but because of the weather, we are heading west tomorrow (Sunday).

As usual, you can follow our flight at . Enter N353RV in the general aviation block.

Stand by for reports! Pray for us to get good news.

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Jon, Amanda, Stephen, Ellie, and Parker met us at the family fav Mexican restaurant to give us a sendoff.

Playing with Grandkids

Parker Evans Swindall - 3

Today is Jan 1st 2012. Parker came home today. Deb and I took some chow up for everyone. Amanda and Parker are doing great!

Two admiring grandmothers checking out a perfect child

Deb helping Eliana with a puzzle

Proud Vern

Parker Evans Swindall - 2

More pix

Parker Evans Swindall arrives!

Daughter Amanda gave birth to Parker about 6 pm last evening, Dec 30th, 2011.

Mother and baby are doing fine at Northside Hospital.

This is our third grandchild but the first one Deb has been present for due to being in the hospital in Arkansas for the previous two arrivals.

Deb got to be with Amanda during her labor and was so glad to be a 'normal' grandmother!

Stand by for a plethora of pix! He's a cutie-pie!  Eliana gets to meet her little brother later today. That will be fun.

Chemo today!

Deb was healthy enough to get her chemo today.We laughed because we were praying she would be. A strange prayer request indeed unless you are fighting cancer!

Deb's favorite snack is currently pear salads.

Vern's Famous Recipe: peel a pear and chip it up in a bowl. Spoon on 2-3 tsps mayonaise. Top with shredded cheese. Bone appetite!

Kids in Prague

Trey, Katka, Evelyn, and their dog Nadia visit Katka's family in Prague, Czech Republic.
Evelyn's grandfather Beda, and grandmother Bohunka.

Merry Christmas!

Deb has been enduring the worst hacking cold either of us ever remember. Our plans to be with family today were canceled by the cold and not wanting to infect others or tire Deb. Our 'angels' provided us with a turkey breast, a smoked ham, and a cake!

So, Deb spent another day in the sunroom but was well fed! Thanks angels!

Merry Christmas all!

Bummer days!

Since we got home Saturday, Deb's cold has been getting worse and worse. Yesterday Dr York decided not to give the normal chemo, but instead, gave a powerful anti-biotic.

Deb coughed, 'fevered', and hacked night and day. Last night she only slept until 1:30 am when she gave up and went to the sunroom to sit up.

Daughter Amanda is on baby watch! We are expecting a grandson in the next few weeks. Of course, Deb wants to be part of this baby's arrival instead of being in Arkansas.

So, now you know how to pray! Thanks!

Made it home Saturday !

At times we had a 41 knot tailwind! Beautiful blue skies. Friends were at the hangar to help us unload. Thanks, friends!

Deb' cold has gotten much worse. We are concerned because she had pneumonia 3 times last year and do not want to go there again.

We had a poor night's rest last night due to a drunken soldier a few rooms down from us. He caused so much uproar that cops were called and when he tried to fight the cops, they ended up taking him to the hospital because of his extreme state.

Blessings!

Classmates, friends, and angels + News

While in the USAF in a previous life, Vern served with Buster Godbee, whose wife Gloria is also a friend. We were based at Moody AFB GA, Patrick AFB FL, and here in at Little Rock AFB ARK 25+ years ago. Well, we caught up with them yesterday and had lunch together. After being around their children Charity and Chad back in the seventies, Deb and I decided we wanted kids. Buster also gave Vern his pre-marital counseling.

MelBell changed many of Deb's dressings last year and was so kind and gentle, It was great to see her again!

Today we ran across old classmates Don and Anita Schaffer. We had a great visit.

Later we saw nurse Gina and finally got in to see the doctor for our eleven am appointment which started mid-afternoon. Although we were planning to fly home this afternoon, I cancelled the flight plan so we can return in the morning. Too much, too late, too bad!  Conservative flying practices!

Why? Because we have a tad of bad news!

We saw another research doctor today because Dr Nair was out of town at a conference. He is from Holland, and named Frits VanRhee .

Although Deb is still in remission, there were two noteworthy issues: 1-An enlarged spot on Deb's breastbone (which had begun hurting her) and 2-an unusual spike in one of her cancer measurements.

These two clues caused the Doc to err on the side of caution and bring us back for retesting in 30 days.

So,  we plan on being here mid January to determine if these clues are meaningful, or not. We were told that if the spot grows, we will immediately re-enter a strong chemo program similar to what we had the first year and that we should be prepared to stay for one day  up to 3 + weeks.

How about them apples?

Bone Marrow Completed-Thursday

We had a nice breakfast of epinada's and fruit early this morning before the procedure.

Just got Deb back to the room and in bed for a nap. Her bone marrow procedure was the most painful ever. Her backside just would not deaden! She had a very experienced medical team that has done the procedure on her before. Afterwards, Deb had to drink a lot of water and sit a while for her temperature and blood pressure to stabilize. All she wanted afterwards was to get back to the room for a nap.

Tomorrow at 11 am we see Dr Frits Vanrhee. He is a Dutchman and one of the chief myeloma researchers. Dr Nair is not available this trip.

As is our normal practice, we will have a list of questions for the good Doctor. If all goes well and the weather cooperates, we will fly home tomorrow afternoon. There is a cold front between Arkansas and Georgia to keep our eyes on.

You can track us at www.flightaware.com , N353RV
Takeoff time should be early to mid afternoon.

In Arkansas

Weds evening and one more test to go in the morning...Deb's fav, the bone marrow test! Friday am we see the doc, then home in Gracie if the weather cooperates. We may have to fly home Saturday if it is still bad on Friday.

It was a long day and after a short nap, we visited our local Brazilian restaurant where Deb had her favorite soup, a chicken-palm heart soup. She tried to get a take out bowl for breakfast but they ran out. After supper we drove around and looked at Christmas lights before returning to the Markham House.

In a previous post there was a pix of Deb doing crafts at the table. She had written a little note that read:

I hope you enjoy this little gift of a hand-dyed hankie and candy mints.

I custom dyed this little silk hankie for you in burgundy, the color designated for Multiple Myeloma.  Burgundy is an appropriate color for a blood disorder. As I looked up the meaning associated with burgundy I was shocked to discover that burgundy is connected with a "fierce struggle requiring the depth of character needed to make a bold plan, take a stand, call in your allies, and be determined to victory."  Is that not true for a Multiple Myeloma patient!?! 

I am particularly happy to give this to you since late October-early November of last year I was struggling with two blood infections and really wondered if I was going to survive. The irony of the journey from DIE? to DYE! causes such rejoicing for me.

Deb Darley
debdarley.blogspot.com

Deb gave out small silk hankies with some mints inside along with this note. For special nurses she had large scarfs.

She visited each nurses station and lady patient she could find in the transplant and infusion center and passed these goodies out along with a verbal blessing. What an encouraging gal! I'm so proud of her!

Sunday night-back in Little Rock

Christmas Party 2011

It's been an active few weeks. Because we had family in town for Thanksgiving, and because Deb has to stop chemo a week ahead of testing in Little Rock, she ended up having two weeks of NO CHEMO! That allowed her to feel good enough to make some gifts for her Arkansas nurses and to attend a few Christmas parties where she was very much the 'old Deb.'

 It was good to see that her wonderful personality was there and her physical abilities good.

We intended to fly to Arkansas on Monday. However, the low freezing level and rain forecast for Monday morning caused us to fly out Sunday afternoon in the beautiful blue skies at 190 mph.

My copilot conked out on me!

Rice country in Southeast Arkansas