Home after a hard day in Little Rock

We just arrived at our Georgia home. Friends met us at Gracie's hangar as we taxied in from our night flight. So good to be home, even for a few days.

Deb had her second bone marrow procedure of the week.It will be used in seeing the affects of the 2 days of experimental chemo on her genes. We return for the next two weekends. Chemo Saturday/Sunday. How better to spend a weekend?

We met new classmates from Macon, Georgia today.

New Experimental Drug + update

Be sure to read the previous post!

Today was the beginning of the new experimental drug. Careful monitoring of all vitals was maintained all day to make sure this new drug did not hurt Deb. We were back in the old haunts where Deb received the post stem cell treatments. MelBel and a number of other nurses called us by name and gave us hugs. It's nice to be in familiar surrounds. The next seat over was the Turkish man and wife I mentioned yesterday. We enjoyed chatting thru their interpreter who is a masters student from Turkey who is studying medical imaging technology.

Deb's white blood count is so low she is vulnerable to infection and an airborne germ is in the hospital, so Deb put on a mask and we are being so careful. That could push her to pneumonia very quickly. Her wound from her biopsy yesterday has hurt all day.

Sunday is a repeat. Monday is a bone marrow in the afternoon and trying to get airborne for home if time and weather allow.

Then back here next Saturday for a repeat.

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Done with the Sunday infusion and Deb is still tolerating this drug. They really monitor numbers every :15 mins and said  that they typically do until after the third set of infusions. Must be a reason for this! None of the other drugs needed this.

Speaking of capitals: Little Rock is the capital of Arkansas and I got this shot as we dropped off  a person at the Children's Hospital.

Plan for return: weather is approaching Tuesday here and Weds in Ga. We hope to depart Arkansas after the bone marrow and arrive back in Georgia after dark. A careful weather briefing is determinate.

Caught up in a Whirlwind+ UPDATE

Just left Dr. Nair for the last time as he is entering private practice in a few weeks. He is turning us over to his mentor, Dr. Van Rhee.

News was not so good and Dr. Nair entered the room with a crisp businesslike manner. He reported that the markers are all climbing and the MRI and PET showed the lesion continuing to grow. He suggested that Deb's case of multiple myeloma might respond well to an experimental drug they were testing here in Little Rock. He wanted a consult with Dr. Van Rhee to get his concurrence. After educating us about the proposed new protocol, all occurring in Arkansas, we agreed we wanted in. There were just a few spots available and he quickly got us one. We are so grateful!

Our faithful nurse Gina is retiring when Dr. Nair leaves. She was so helpful in helping put together our new treatment plan and schedule. She brought in a scheduling nurse and a research nurse. We had a 'transition party.'

All of this is very fluid and may change, but this is good for the moment.

> We had planned on flying home after the appointment this morning. Scratch that.
> Deb has a needle biopsy of the lesion on her sternum scheduled for 2 pm today.
> We have another bone marrow on Monday to determine the genetic impact the new drug has.
> We will have two days of infusions of the new med per week here in Arkansas (must go in very slowly to avoid kidney complications).
> We do three weeks on/ 1 week off, then a week of testing.

As we were back out in the waiting area, we were warmly greeted by the Turkish family we had known from last year. The man was on his last legs literally when we last saw him. He was put on the experimental drug and he looked and sounded great! It was as if God sent an encouragement to us at our exact moment of need! PTL!!!

We just got back to the apartment and are going to have a sandwich before heading back for the next test.

Check what Dr. Google says about this med: carfilzomib
http://en.m.wikipedia.org/wiki/Carfilzomib

CHECK BACK AS WE JUST GOT CALLED IN
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Well-the short biopsy ended up taking 2 hours of a doctor leaning over Deb pushing a long needle into her sternum. Ever tried to push a needle thru a bone? Deb is on a strong painkiller to ease the biopsy pain. She got a strong directive to take pain meds every four hours and to take it easy. We got approved for the experimental drug and start that noon Saturday and Sunday. As a reward for good behavior, Deb gets to have another bone marrow procedure on Monday. After that we are cleared to return to Georgia until next weekend. Repeat three weeks, and one week off. Repeat.

Yesterday it was 84 degrees here. This morning it was in  the 50's. I had Deb pose in front of a leafless oak tree in our neighborhood. These trees are so beautiful! 

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We met a doctor from Macon, Ga who married a gal from Little Rock. Sure is nice to see the Bulldog Nation represented out here amongst these Sooyee-pigs!

 

Finally, many rooms and buildings here at UAMS are labeled with donors names. Please consider that every time you go into a church sanctuary,library, and many other buildings, you are blessed by the hardwork and generosity of previous generations. Many sacrificed so we have a facility today. Therefore, it is our duty to lay up for the next generation. Sort of a pay-forward system. What do you think?

Here's one I found today that benefits us:

Thursday morning

Deb had a tough day yesterday. She rolled over and went back to sleep this morning. I was eager to find out if her gimpy leg was still a problem. Yesterday her leg would fold up under her, making her pretty much immobile. After she had enough sleep, she came slowly hobbling into the living area. So far, no folding leg syndrome, but still walking like Chester, if you remember him! (Actor Dennis Weaver- A star from the old Gunsmoke TV program) Remember Chester's famous line? What was it?

So, today's plan is lots of rest.

We have today off for allowing time for all the tests to be processed . We see Dr Nair at 9 am Friday and if he clears us to leave, we hope to have lunch and then head to Georgia.

We ran into a favorite nurse from Deb's treatment in past years. She also runs the Gamma Knife, which is a device that allows radiation to be used within the brain, breast, organs, and other sites where an actual scapel is not welcomed. It does this by using three dimensional targeting of the cancer spot from many low-powered Gamma Ray 'shooters' all focused on the target. The low powered rays are harmless to nearby tissues but are very powerful when they all hit the target from many directions. The Gamma Knifes are limited in number and location-www.uamshealth.com/gammaknifesurgery

Weds-bone marrow day! UPDATE!!!

The 12 story UAMS Cancer research and treatment clinic where we headquarter while in Little Rock.

There are Sky Bridges that take us building to building across this large campus. Much appreciated when Deb was in a wheel chair and walker. Still pretty nice!

Today is the worst for Deb of the testing days. The dreaded bone marrow test!

Deb takes a few meds to prepare her for the upcoming pain and when we get to the clinic she will take her 'popsicles', which are oral fentanyl meds ( a pain killer) Since I mentioned 'dreaded', I've identified one of the worst parts of coming to UAMS: knowing that the bone marrow test is very important in measuring this disease vs treatments. A specified amount of marrow must be collected from a hole bored in the hip bone. Then, a specified minimum amount of actual bone must be collected. Two techs perform the procedure. One is the driller-collector and the other makes microscope slides and sample prep for the labs. Sort of a good-guy bad-guy approach.

Then a few hours break to recover and then off for another MRI.

Blessings!
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UPDATE

Noon and we just got back from the hospital. We have :45 mins before we have to be back for  DWIBS MRI. (The DWIBS is just next to your gizzard)

After the bone marrow, which was done by an MD, we sat for :15 mins with pressure on the pressure bandages. Classmates in the waiting area were mostly ten or more years older but all rabid SEC football fans. We had FSU, Florida, Mississippi State, Alabama, Arkansas, and of course, two Georgia Bulldogs! What a buzz!

Deb was feeling pretty good but wanted to walk some in order to ease pain in her right hip and leg. At first she was able to walk fine with assistance, so we took a long walk in the hospital hallways. We headed down to the hospital cafeteria for lunch. Lunch was fine, but by the time we were done, Deb was really hurting. We started out of the cafeteria area and Deb almost collapsed. She leaned against the wall and broke out in a sweat. Probably ten different doctors and nurses stopped to help. One found us a wheelchair and off we rolled!

We wheeled past the MRI  just in case we could get in early: Turns out we will actually be getting in late. So, back to the Markham House and Deb required a lot of assistance getting on /off the bus.
It was hard to get Deb to the bed, but she's there for a :45 min rest before the MRI.

Back tracking, lunch is always fun because UAMS is medical School for Docs and nurses. They all gather in one seating area for lunch and have huge book bags and look like High School students. Of course they all have iPhones and are young and energetic.  Now, just next to them is a section for the faculty. Faculty looks like nursing home candidates! What a contrast!

I'm heading down for a wheelchair to take Deb downstairs to the shuttle bus. She has her leg propped up and is in significant pain. I just gave her another strong pain killer.

Later...

Up at 4 am Tuesday

Carl is always the starting point. He is a greeter and helps everyone get signed in on the computerized sign in system and begin their paperwork. He is a real encourager!

Deb got up at 4 am for a small snack to tide he over until her fasting for the tests is over. First thing this morning was a MRI. Then we did blood and urine tests and paperwork. We just came back to the room so she could get a nap before we head back to the hospital for a PET scan. Tomorrow morning is the dreaded bone-marrow procedure.

We met two sets of classmates from rural Louisiana. They were sad to be here today because it is the start of a special country-style Mardis Gras back home. Their communities have thousands of folks on horseback who ride farm house to farm house in their costumes collecting food, mostly chickens. They typically have to run around and catch the chickens they are given. Then they all gather and cook a huge meal-a special gumbo. Did I mention the classmates said they start out drunk and drink all day and night during this strange 'trick or treat'?  They also mentioned that they have many tourists who come over from France to enjoy their Cajun hospitality.

Glad I never got to celebrate this way! The chickens are way too fast for me!

Just met a twenty-something in the breakfast area at the Markham house who is here as a high risk pregnancy patient. She had uterine cancer several years ago and had half her uterus removed.  She has had other cancer problems. Now she is thirty weeks pregnant with her 'miracle baby.'

Just got a call that our grand daughter Ellie that Deb visited a few days ago has come down with chicken pox. There is a sign on the bone marrow department that says to report exposure to chicken pox and shingles. Guess we need to check in with them. Pray that Deb has no reaction and for Ellie's fast recovery and for Parker's protection also.

Return to Arkansas

Today (Monday) we were rewarded with perfect flying weather for our return to Little Rock. We could clearly see the city of Memphis from our perch at 8000' from over forty miles out.

GPS screen showing our route from Falcon Field(on the bottom) to North Little Rock. We pass over Anniston, Talledega, Birmingham, Columbus,Ms, Shepherd Smith's home, Tunica, Ms, cross the mighty Mississippi, and on into Little Rock (at the top)


The Small area outlines are Military Operations Areas. We try to stay below them.


 Deb claims she didn't sleep very much because the sightseeing was so beautiful today. However, here is the photo I took mid way of my vigilant co-pilot. "Vern reports...you decide"

Gracie, the airplane, was completed and I finished test flights just one month prior to Deb's diagnosis for multiple myeloma. Since then, we have made many trips back and forth to Arkansas. Today Gracie hit a milestone: she passed 500 hours in the air. At about 200 mph average, that means she has about 100,000 miles on her airframe. Mostly troublefree and with 100% reliability. Not bad for a home made airplane, huh?

When we arrived at the North Little Rock airport, we gassed up Gracie for the return trip home. Then Elmo the lineman helped us put Gracie in the large hangar for the week. Our rental car had just been delivered so we loaded up and headed towards one of our favorite destinations...LUNCH! We had turkey and dressing so supper will be lite fair. :)

Since Deb is on chemo all the time except the week before tests in Arkansas, Vern gets to see Deb at her very best on the day we arrive in Arkansas. The real Deb is still cheerful and a joy to be with! Then comes a week of painful testing and the downhill slide. We return home and begin the chemo trail all over again. Life is not so much fun for Deb when on chemo. :(

Our room at the Markham House Suites is the first room we ever stayed in and we are flooded with memories of that time several years back when Deb had seven untreated crushed vertabrae and had been selected for hospice by our first oncologist. Seeing Deb today, it's hard to realize what a close call she had. It's been quite a ride!

We owe a huge debt of gratitude to all who have helped with Gracie, brought us food, sent care packages and fruit, cleaned house, prayed for us, given money for the huge expenses incurred, and encouraged us with cards and calls, etc. Thank you!

For the Lord's healing mercies and for equipping the caregivers and medical staff, we are so grateful!

Blessings all!

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!