A Hard Monday-Labs and Pix Deb Shot

Click on pix to enlarge

Deb had some breakfast then we went to the hospital for her special anti-pneumonia treatment. There was some confusion about the location and I was having to wheel Deb in a wheelchair today because she was so weak. So we were sent from the East side of the hospital to the West side only to be told Deb's treatment would be where we had just come from.  I think I got my aerobics in today!

After that treatment,  we came back home and Deb slept until time to go into the chemo clinic at 2:30. She finished about 7 pm tonight. She sat in cluster with the Turkish family and our young Austrian gal. She had been back in Austria to see her young son, then had to return for treatment. The Turkish family will have several more weeks of treatment then go home for six weeks.

I've never been in prison but I suspect the feeling is similar when one is released to go home after a long clinic stay! The new condo is helping us deal with that felling of total separation when you are away for a long time.

One of the belly shots all ready to be savored

They usually save the best for last; sort of a dessert-med. Deb gets to have a shot in her belly which is put in very slowly. Perhaps they know people would leave if they started with a belly-shot?  Would you?  Yesterday she got two of them. You know its coming when the nurse sweetly asks "which side do you want it in?" Deb has quarter-sized bruises all over her tummy. Pictures not available because Vern wants to live!

Deb wanted her special cool supper again tonight: cottage cheese mixed with banana and Cheerios.
Vern had something else!

{interruption while we troubleshot the warning from the infusion bag. Deb had already gone to bed}

Labs here are a very big thing. Deb had eleven tubes of blood drawn and analyzed today before she got her meds. Of course, the main chemo is 24/ 7 thru the bag we tote everywhere. Last week we saw a man get tripped up by his tubes and snatch needles, lines and bandages out of his arm. Bad form!

We get copies of the lab reports every day. A normal range is listed so you can tell if that item is normal, low, or high.

The major subtitles of the labs are:

Hematology-ten items measured
Automated Differential-13 items
Platelet Analysis-2 items
Coagulation-2 major items
Coagulation -General
Special Coagulation Tests-
Chemistry Basic-9 items
Liver Function-6 items
Misc Chemistries-5 items
Nitrogen Protein Compounds-3 items
Hormones and Tumor Markers
Immunology
Serum Protein Electrophoresis-10 items
Serum Immunofixation-2 items
Quantitative Serum Immunoglobulins-10 items
Molecular Diagnostics-6 items

Somewhere there must be a small army of lab techs processing this stuff!

Deb shot some pix of me which she asked to be posted.

Practicing so I can get to next year's Toad Suck Carnival-Yes, there really is one out here!

Doing some business

My bed away from bed. Chairs were designed for seven feet and taller.

CONTACTING DEB & VERN

On the right side are emails and phone numbers. No addresses! Note: bad guys like to burglarize while one is not home, so we try not to help them! Send us an email request and we will be glad to give you our address

Sunday Happenings-Turkish friends

Relaxing while enjoying another round of chem. Click on pix to enlarge

Today was a good day!  Deb felt good and we heard encouraging words from a number of friends and family members. The labs were good and we even heard about a 20 year survivor from NYC who still comes here for annual checkups. Our nurse today was particularly helpful.

We are in clinic with our Turkish friends who are so friendly in spite of language difficulties. They keep an English speaking son with them. This son is a computer science major at Kennesaw State  in Atlanta. The father who is the patient was a shriveled up wheel-chair bound person when we first met him. Today he is vibrant, fully mobile,  and doing well on Carfilzimib. Just wish it had worked for Deb!

One end of our table is the medicine department complete with a detailed action plan of when to take with what

'Judge' Steve and 'Capt' Dave

Airplane Angels Dave and Steve flew into town via airline and got a tour of the UAMS hospital environment. Afterwards they came to the condo for a sandwich and a visit with Deb. Then Vern took them to the other airport where Gracie parks to fly her to her own home hangar in Peachtree City. The Jet business here has been so kind to let  Gracie park in their hangar and we did not want to abuse their kindness.

Forgot  to mention that last evening we had a wonderful conversation with Unk and Esther-Vern's uncle and aunt.

Our three children are very concerned about their mother and Amanda is coming this weekend for a day.

Nurse Judy reloads the 24/7 infusion bag. It takes two nurses agreeing and signing off on all chemo and they always confirm Deb's name and birthday to ensure they have the correct victim. The workload is sometimes so high I can't  see how they get it all done.

After Steve and Dave left, Deb had a 2:30 show time at the chemo clinic. We finally closed the place after six tonight. One of the nurses had a wonderful missions discussion with us. She had made a number of medical missions trips and got all teared up talking about the poor and needy she had ministered to in Africa and Ecuador. You could tell where her heart was! 

Deb had to have 'cold' for supper because the chemo makes her feel hot. She had to have mild because her digestion has been abused. So, chef Vern provide her with cottage cheese mixed with Cheerios and banana. {She asked for it!}  Watermelon was for dessert.

Vern had spaghetti.

Deb has expressed joy multiple times over having the condo. She feels like it is home and we have confidence in its cleanliness. She has selected a number of items from our local second hand store that make it 'hers.' Deb is very artsy and has a flair for decoration that her cheap husband has seldom allowed to fully flourish!

Mr Sam

Our eighty-four year old neighbor Mr Sam called on us tonight to bring us some more magazines. He lived in Augusta, Ga over fifty years and used to have forty passes to the masters! There are parallels in his and Deb's life. He was raised near Memphis and had relatives in Corinth: Deb also.

He worked at Oak Ridge: Deb's father LT did also. He did business in Atlanta when he was young: Deb was a stock analyst in Atlanta after college.

Anyway, Mr Sam is glad to have Georgia neighbors and we are glad to have him.

Monday we have a morning treatment to bolster Deb's respiratory system to help prevent pneumonia. Then at 2:30 we go back for chemo. As someone is fond of saying, 'I'll have another please."

Finally, as Vern gave Steve and Dave the grand tour today, we once again passed by the Winthrop P. Rockefeller entrance where the Rockefeller family Bible verse is inscribed on the 12 story building.

Micah 4:6
"And what does the Lord require of thee, oh man, but to do justly, to love mercy, and to walk humbly with thy God"

Does your family have a family verse? If so, please post it for us.

Blessings All!

Saturday-Started Chemo -met the 'Red Devil"

Deb got all sorts of meds and labs in prep for starting the chemo. Everything was OK so the nurse hooked her up to 'the bag.' It has two pumps and two IV bags full of potent stuff -see the list at the end of this post.

Instead of the neck they used her left arm for the ports. Her poor arms are both like hamburger due to the manipulation to insert  the lines and low platelets causing bruising.

Because Deb has had such issues with pneumonia in the past, Nadine, the APN who saved her life two years ago spent some time prescribing some special meds to keep that pneu at bay.

Nadine is like a little General-she takes charge big-time in a crisis. So glad she's on our team!

Nadine

 

 

MEDS:

Here's the basics for those interested:

Chemo
Thalidomide
Dexamethasone
Velcade
Cisplatinum
Cyclophosphamide
Etoposide
Doxoruicin
Neuprogen
Lovenex

Support Drugs
Acyclovir
Levofloxacin
Clortrimazole
Pantoprazole
Lorazepam
Pentamidine
Docusate sodium
Senna
Apepiant
Granisetron

Friday Activities + Introducing Dr van Rhee

CLICK ON PIX ONCE TO ENLARGE

Today Deb had more labs in preparation for the chemo which starts Saturday.

Morning started with a surprise. At 6:45 am I heard a noise and looked up only to see a beautiful hot air balloon passing overhead. I called Deb and she ran out to see it also.

She had a port with two connectors installed in her left arm. She has had so many ports in her neck that the last time it was recommended to try the arm. The connection winds from her elbow up into the right chamber of her heart. Starting Saturday she will have a portable pump 24/7 pumping chemo formulations into her. One is called the' red devil' and has to be infused by itself because it cannot co-exist with other meds.

Deb has been having intense cramps in her toes and feet due to low potassium. Sure makes her grimace!

Our wonderful UAMS Pharmacist Angel Carla has us set up to get a special drug on Monday that will give some pneumonia protection. This happens before the Monday chemo infusion.

Thinking about how helpless and awful Deb will be feeling soon, she did a little preparation and we got a walk in haircut for her to get her hair cut as short as possible so when it starts falling out soon it will not be so messy. At some point Vern will pull out his electric clippers and give her a buzz job to end the mess.

We think we solved the Comcast issue. After talking to my sixth Comcast rep, I found out that the reason service was delayed was that the last resident in this condo left a sizable balance due. They checked my records and set me up for a self install kit coming in on Monday. It will be so nice not to have to go to Starbucks just for the internet connection. I never lost anything there, if you get my drift!

Angels are coming in Sunday am to pick up Gracie so she doesn't have to hang out with all those wild jets in that hangar!  We talked to son Trey from Belgium and daughter Amanda in Atlanta a number of times. Of course, they want to come support their mom.

We are about to start on another grand adventure. We are eager to see how the Lord will guide us! He is faithful!

A little about our doctor, Dr. Frits van Rhee, MD, PhD, MRCP (UK), FRCPath

He is a professor and Director of Clinical Research with the Myeloma Institute  here are UAMS. He got his medical degree from Erasmus University in Rotterdam, Netherlands. He trained in internal medicine and hematology in the UK. He trained in bone marrow transplantation at Oxford and the Royal Postgraduate medical school in London. His PhD from the University of London focused on the molecular biology and immunotherapy of chronic myelogenous leukemia. His research has been on leukemia, graft rejections, cytomegalovirus and Epstein-Barr virus induced lymphoma. His present research is on immunotherapy for myeloma. He is a leading expert on Castleman's disease.

He is  a member of the Royal College of Physicians of the UK and the Royal College of Pathologists.

We hope we can teach him a few more things. RIGHT???

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DId I mention that we have two interesting neighbors across the street from the condo. One is a struggling church that was severely damaged by a tornado that pulled bricks off the two story building front and back.

The other is a bridge club; you know, the card game! A wealthy player got tired of not being able to play due to location changes and restrictions, so he built the club a very nice home of their own!

Where would our society be without the generosity of the wealthy? Every clinic and facility out here at UAMS has the names of wealthy patrons who used their wealth to provide a lasting facility that benefits us all. Thanks to all the wealthy angels who have shared with us!

Black Thursday

Yesterday did not end as we had hoped and planned. We had a 2 pm appointment with Dr van Rhee. Anticipating a good report, we had already prepared Gracie for the return trip and had filed a flight plan home.

When the good doctor evaluated Deb's MRIs from this week and compared them to last months, he was not pleased. He had hoped the Carfilzomib would have started shrinking the lesions by now and had encouraged us to be patient with the experimental drug last time we saw him. But yesterday, he said the lesions had actually grown significantly and were beginning to multiply and spread. He said it was time for decisive action: he recommended immediate 'hard chemo' like Deb had when she arrived here almost two years ago to the day. When he showed us the MRIs and talked to us, we quickly agreed. He also used the dreaded question 'Are you prepared to stay?'

For anything less important, probably not. To save a life, you bet!

So, in a few minutes, Deb gets some more baseline blood tests, then we meet with Kari, the planning nurse. Later today Deb gets a central line installed. This time she will probably get one in her arm rather than the neck. Saturday she begins the VDT PACE chemo. It's nasty stuff and she will once again lose her hair. 

We did joke that since her original hair  (which, by the way has never been colored-she still has black natural hair) was thick and straight but came back after chemo soft and curly. We though perhaps it would come back this time its original format. Any bets?

So, the schedule is like this:

Here 3 1/2-4 weeks
Four days of hard 24/7 chemo starting tomorrow. Saturday
Neutrapenia-no immune system left in nine days
12-14 days- immune system begins to rebuild

Because Deb is prone to pneumonia-remember the eleven horrible days in  the hospital last time she had this chemo?- she will get a special treatment today to help prevent pneumonia- Pentanadine is sounded like.

She will also continue the Thalidomid and get infusions of the steroid Dexamethozone.

The goal: shrink the lesions.

She will get another MRI session on day 10 to see if it shrinks. If not, the next step is called 'Salvage Therapy.' How's that sound to you?


When we finally left the doctor's we were emotionally shot, so we did what all good Americans tend to do when under stress: we ate!

We had a nice Key Lime pie to help us deal with everything, then' home' to the condo for rest. By the way, that's the term Deb uses: let's go 'home.'

This was certainly not our desire to be here but we are confident that  it has not surprised our Lord who has assured us that he will never leave us nor forsake us.

Blessings All!

Stay tuned for more adventures!

Vern's Nature Walk Yesterday

While Deb was napping, 'ole Vern went off for a hike at a nearby park. Arkansas has on its auto tags 'the Natural State'. Little Rock is on the border between the flat rice and farms East of town, and the mountains and rivers West of town. Don't know where the Little Rock name came from , but I can tell you there are some pretty big ones here, including the next park West of the one I went to, called Pinnacle Mountain. It looks like a volcano to me!

Anyway, just 3-4 miles from the condo on the Arkansas River is Two Rivers Park. The Arkansas River and the Maumelle River merge and on the peninsula is this beautiful park which is connected to civilization by a long pedestrian/bike bridge right next to a huge interstate bridge.

Click on pix to enlarge. These shots are taken by my iPhone, as usual!

The pedestrian bridge

The Arkansas River

The interstate bridge

The Maumelle River with Pinnacle Mountain in the distance

Bikes are popular

Huge twisted vines abound

No shortage of pine trees!

This is posted Weds evening. We see the Dr tomorrow at 2 pm and hope to fly home and get there just before dark Thursday, Lord willing!

Weds Update

 Deb is in the MRI clinic right now. (7:30am) More tests when she is done. We meet with Dr van Rhee at 2 pm Thursday. Hopefully we will head home after that appointment.

Deb has been very tired but happy with the condo. She has rested and enjoyed the peaceful atmosphere. There is almost no noise! So different from other places we have stayed. Food is just steps away in the frig.

We still do not have internet service at the condo. Comcast assures us there is no service there and their engineers need 7-10 days to establish it. However, our neighbors have Comcast and the connection box is beside our deck!

Yesterday I took a long hike while Deb slept. More on that when I get a good connection so I can upload pix.

Monday in the West

Nurse Kathie and Deb are buds!

Deb has been tasked to come up with a name for her Western abode. Stand by for creativity!

We spent the past several nights in the condo. We've had a few neighbors come over. One sensitive male asked ' is that all the furniture you are putting in here? '

We have enjoyed a space of our own. The few clothes we have with us were all washed and dried here and are hanging in our closets.  We are in withdrawal from no internet or TV  (yet).

Deb has not felt good. She had breakfast this morning then went back to bed.

Yesterday in the chemo clinic she passed out and I had to hold her until a nurse got a chair under her. Even though her numbers were mostly OK, she has started passing out from time to time as she arises from sitting a while. It keeps me on my toes!

Caleb is a PA and is the assistant to the big boss here-Dr Barlogie! He is an Auburn grad and answers to 'WAR EAGLE" every time!

We had not planned on being here this week but the mix up in Doctor's orders a few weeks ago resulted in some SNAFU which has us here  this week instead of next week. When we discovered the mistake this weekend,we took it to PA Caleb who took it to Dr van Rhee, who was in hospital rounds. They decided we should stay this week and test, then be off next week. So, 7 am Weds starts the fun. We see the doc on Thursday afternoon and hope to fly home Friday am.

Mel Bel

Our young nursing student Mel Bel told us that she at her son Jack have signed a contract for a home near ours and hope to close and move in soon. She has helped Deb so much, especially with careful bandaging!

Yesterday was Mother's Day and we talked to ours. We wish we could have seen them.

Like many mothers, Deb got the present she wanted which, as with many things Deb, has a story attached.

The present will be presented later, but here's a clue: The present's name is Emma {named after a favorite angel}, is pink, and has long eyelashes that glow in the dark! {try sleeping in a room with glowing eye lashes!}


More later on Emma!

Condo Closed! Tour

Deb waiting to be called into the infusion clinic at 7 am

Click on pix to enlarge

The day started with Deb arriving at the Chemo clinic at 7am and getting in quickly. Seats are assigned by chair clusters of four. Deb was assigned to seat A-1. By 10:30, Deb had had her tests, and received the Carfilzomib plus other drugs. Her low platelets that had caused Thursday to be such a drag for Deb had risen into the mid fifties.

We have been waiting to close on the condo for about a month. Today everything was finally ready and the Title Company was available at 11:15. We met our real estate agent and in about an hour, the condo was ours! We took Ann, our agent to lunch at Loca Luna, then Deb and I then met the furniture delivery team at the condo. Soon we had the essentials. Saturday after lunch we get the appliances.

One of Deb's angels had brought us a basket of condo essentials which we will now get to use! Thanks, angels!

Ann brought Deb a welcoming flower arrangement! Thanks Ann! Deb is a flower gal.

Flowers at Deb's front door!

The condo has a large living/dining area, two bedrooms and two baths plus a kitchen with a laundry area. There is a small fenced back yard with a small deck. There is a fireplace in the living area.

Smelling the flowers on the table

Deb's nap chair

The couch

Her own bed!

From across the street from the church parking lot

The front door and stoop

The back door 

For some time we have sought wisdom from the Lord regarding whether or not to pursue the condo. Time and time again we prayed for it to be blocked if it were not God's best for us.

Several 'co-incidences' that pointed to yes-

The realtor who showed it to us-Ann- was at a diner with a classmate who recently passed away. The classmate told Ann about us and our need. She gave our number and Ann contacted us.

Ann said the small complex was unknown to the local realtors and she only found out about it when she visited a friend who lives there.

After we signed a contract, it was found that condo financing was hindered by new regulations that would prevent any mortgages if anyone owned more than ten percent of a complex. One of the owners here in the complex of twelve owned two, thus making this development ineligible for financing. He was happy and wanted no changes. So, it looked like a dead deal.  However, the CPA who handles the mortgage company affairs was also that individual's CPA. He became interested in this situation and had a pow-wow with him, changing his mind and helping resolve this issue. What are the chances of both parties having the same pro-active CPA?

Deb just went to bed at the hotel. In spite of our progress, the condo was not ready for our first night yet. Deb is tuckered! But, is she ever happy!

Some folks have cabins at the beach. Others, in the mountains. Deb has one in Little Rock and it will make her life sooooo much better!

PTL!

Back in Arkansas-New Route ++

 Deb has felt awful for a number of days.  I worked half a day, then went home to grab Deb and our stuff. We had lunch then headed to the hangar to load Gracie. A number of Airport Angels had already opened the hangar and prepped Gracie for the flight. Because Deb feels so bad, they suggested that we load Gracie and Deb in the shade of the hangar. That's what we did and when we were ready to start the engine, the Airport Angels towed us out for engine start. What service!! Thanks Angels!

 Deb feels awful today. The meds seem to be 'cooking her' at times. In other words, she cannot get cooled off.

Now, the standard lapse rate can help Deb.  Say what???

As one ascends in a normal atmosphere, the temperature drops 3 degrees F/ 2 degrees C per thousand feet of ascent. So, to keep Deb cool, I needed to file a flight plan at a higher altitude. Normally we fly over at 8000' or lower because we normally fly directly to Little Rock and must fly underneath the military operating areas over Alabama and Mississippi. Today I filed a longer route which took us north and over Memphis. At 10,000' it was 45 degrees F today. Deb had the vents open and blowing directly on her and was still hot.

Guess I need to install an oxygen system in Gracie so we can fly higher? Install and air conditioner?

Memphis-click to enlarge

 Deb felt so bad she asked not to post her pix today. Instead, she asked me to post a photo of her pilot. Here  'tis!

We have a 7 am chemo appointment Friday. After that an attorney is standing by to close the condo contract. Hopefully, tomorrow afternoon it will be Deb's western headquarters.

Over the past few months we have looked around at furniture in hopes of eventually having a small place here. Deb has limited endurance and has enjoyed a few outings to look around. We picked out a few essentials and put down a deposit on them. So, if we close, we will then have these items delivered and suddenly Deb will have her own bed in Arkansas!

Someone asked for a video tour. Stand by; if we close!

Condo update + more

We heard that late afternoon today our mortgage on the condo in Little Rock was approved. More as it happens in our grand adventure ! Stay tuned!
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Heading to Arkansas via Gracie after lunch today {Thursday}. Closing scheduled for Friday afternoon.
Deb is felling puny and we went to see our local oncologist Tuesday to make sure her platelets were OK. They were low but sufficient to get her back to Arkansas.

Home again!

After morning tests and chemo, a nice sandwich, and filing a flight plan, we hoped in Gracie and headed home. It was a nice flight and now we are home resting from the trip.

Friday Chemo

Deb kicks back and relaxes while enjoying her favorite chemo cocktail!

One of the nurse supervisors makes a colorful and playful display each week on her counter intended to bring a chuckle in an otherwise somber spot

Deb hit the chair a little after seven Arkansas time this Friday morning. Her labs took a while, then she got Carfilzomib. When we were done around 11:30 she was starving, so off we went to Loca Luna. Then it was nap time.

We heard from our realtor several times: still waiting for the underwriter final approval and an attorney is available for a late closing today if we get the approval.

Our church is having a retreat at Vogel State Park in North Georgia this weekend. Our aviation gang is using our hangar to host an RV fly in of about 150 folks. Here we are in Little Rock just cooling our jets!

A corny joke made it our way.   Here goes:  May the fourth be with you! (check the date if you do not get it)

More later if we get condo news!

We've looked at Clouds from Both Sides Now!

Click on pix to enlarge

Worked half a day and then picked up Deb and loaded up Gracie. We had lots of weather flying in moderate rain (no thunderstorms). We used our xm weather to pick our way between the heaviest rain storms. Finally over Mississippi we broke out into the clear just above the solid cloud layer. Vern got a real instrument workout: Deb read a few chapters!

We have 7 am chemo chair appointment both Friday and Saturday. Hopefully Deb will get some meds to help her overall feelings. She has been weak and very tired all weak.

Blessings!

Heading Back to Arkansas

Tomorrow afternoon is our travel time back to Arkansas. Hopefully the weather report I get in the morning will allow an afternoon flight. Otherwise we'll have to bug out earlier.

Deb has stayed close to home since getting home. She had an awful night last night and is feeling puny today.

Our grand daughter Evelyn had a birthday party with her friends in Belgium. Happy birthday Evelyn!

Our friend Larry F. had a major heart attack yesterday but is doing better today. Please pray for his recovery.

We had a nice conversation with our nephew Joshua tonight. Josh is in Federal Prison and gets to call every now and then.

Chemo is scheduled for 7 am Friday and Saturday. We heard from the realtor and Mortgage company in Little Rock. Apparently they are about done with our paperwork and they say a closing is close!

Blessings friends!