Tuesday-Weds

Deb with her Fayetteville, Ga nurse as she gets her IV's of chemo.The nurse recently recovered from esophageal cancer himself and sat in these same chairs with his peers caring for him.

Yesterday afternoon Deb had three tubes of blood drawn for tests to decide if she was whole enough for the overdue strong chemo she needed. We waited in growing anticipation and were delighted when Dr York came in and said her counts were good enough for the strong chemo.

Now, isn't that strange when you really want something like 'strong chemo?'

Amazing how life has changed and priorities are so different! How are yours changing as you face life's travails?

This morning Deb awakened and came into the sunroom. As she headed into the kitchen for a bite, she collapsed onto the floor. I got her some water and she was able to get up and make it back to bed with my assistance. (The water improves her blood pressure.) At lunch when I went to check on her, she was raring to get out of the house for a ride. What a difference a few more hours of rest makes!

Later in the afternoon our friend Mary came by. Mary lives in Jacksonville, Fl and has been friends since Deb's college days. She is a faithful poster on this blog.

Katka sent us a snapshot of grand daughter Evelyn playing the AFLAC game. Do you know how to play it? All it takes is a duck!

Visiting Deb's mother and brother

Because of spending so much time either out of state, or really puny because of meds, we haven't had much time with family members. Deb is about to hit some nasty chemo Tuesday, so today was the best {least worst} day to make the 2 hour drive to Warner Robins to visit her mother Doris  and brother Tim. It has been months since she saw either.

We checked Doris out of the nursing home and took her to lunch, then for a drive. She seldom gets out and is in a wheel chair. She seemed to enjoy it and when we got home Sunday afternoon, a nap was in order for both of us.

Grandkids and granddogs today

Jon holding L-Oscar, C-Mr T, R-Annie

Click on pix to enlarge

Deb felt better today so we took a field trip to see daughter Amanda and Jon with their children Eliana and Parker. We got to play grandparents for a while. Then we stopped by Vern's parents for a short visit. When we got home it was nap time for Deb!

Deb and Parker enjoy the play center. Parker is six months and weighs 20 lbs. He is about to start crawling

Vern teaches Parker proper nap technique

Two perfect heads

Friday evening

News has been scarce since we've been back in Georgia. Sorry! Thanks for reading anyway!

Deb has spent this week being miserable between the cold and chemo. No company. Today was a change. Deb had several friends drop by and call today. The icing on the cake was when son Stephen dropped by.

Tuesday is the next chemo appointment. Hopefully Deb will be well enough to have all her chemo.

Have a great weekend!

Blessings!

Shocking Invitation

Deb got a call from the Research Nurse at UAMS today that shocked us and put us in a ' what-goes? ' mood today.

Yesterday Dr van Rhee was scheduled to present Deb's case to the entire research and care team at UAMS Myeloma Clinic. Today the doctor had his research nurse call Deb and invite her to become part of an experimental treatment plan. This plan is the same one that one of our closest classmates was enrolled in when she died. We spent time with our friend several weeks before she died and discussed the treatment with her.  We will discuss the possibilities with Dr van Rhee when we return to Arkansas in mid-July. In the mean time, we have many questions we are formulating for that meeting.



Pray for us to have wisdom.

Deb is still suffering from her cold and will be glad when it passes. The limited chemo she had yesterday kicked in today. No fun!

Food angels brought us a great supper tonight. Thanks Food Angels!

Tuesday Afternoon-1/2 the chemo

Today was chemo day in Georgia. First on the docket was accessing the port in Deb's upper chest wall. It has a tube that allows IV's and shots to been placed into Deb's body without wearing out her veins. Can you imagine what your arm would look like if it had multiple IVs and shots each day?

After the access, four tubes of blood samples were pulled. When the results were available, Dr York came in and checked Deb over. He gave her approval for one chemo, but not the bad-boy we were expecting. Deb's white blood count was too low to safely give her that one. We try again next Tuesday.

Deb's been coughing, blowing, and feverish since Saturday. That also means lonely since she was not able to have company. What's the worst thing you can do to Deb? Leave her alone! Which is unfortunately how she spends most of her life.

Sat-Sun-nasty cold

Deb has enjoyed being home to rest and Vern has been busy paying bills, cleaning, putting away, grocery re-stocking, etc.

 Deb came down with a cold on Saturday and it has gotten worse on Sunday. She came to the sun room about mid-morning, ate a bite, laid on the couch and went back to sleep for hours!

But, it sure is good to be home! Even with a cold!

Blessings!

Back in Georgia for a Month

We got back to Georgia mid-afternoon and Deb was starving! So, a quick trip to her favorite pizza palace took care of that.

Friends met us at the hangar and put Redbird away. Thanks airplane angels!

Then, off to Deb's oncologist to present him with the orders needed for the treatment that begins Tuesday afternoon.

It's good to be home!

Doctor's Report

One of Deb's friends made some gifts to pass out to classmates and nurses. Each one is meant to encourage folks that are suffering. There is red coral that stands for blood, fish vertabrae to remind us of the most common bones affected, and the ceramic Hope Dove. Deb was so creative in her wrapping.

We were heading to the chemo clinic to get Deb's port accessed and flushed when the phone rang and the MRI team asked Deb to come back and repeat a DWIBS MRI.

We barely made it to the doctors' appointment in time to wait a few more hours. Would have hated to miss the wait!

Dr van Rhee came in and spent some time checking all the labs and reports. Then he fired up the computer and looked at the latest MRIs and PET scans.He pulled up a new image and posted the last one next to it. He began to smile as he noted that each one of this week's images showed improvement. When he smiled, we smiled!

He then picked up the phone and dictated his report. By allowing us to hear his dictation, he only has to say it once, most of the time. Of course, he gets somewhat technical on us but we get to ask all the questions we want to.

Here's some of what he said:

Lesions: significantly better
M component: Trace only
Light chains: Was 9.7, now normal
Bone marrow: normal
Imaging: considerably better
PET: much better

His plan: one month at home doing maintenance level chemo weekly . Be back in Arkansas for testing in a month.

Take 1.6 Velcade sub
Dex day of and day after Velcade
Cytoxin drip once/month
Plus a boatload of other meds

Meanwhile, he will explore with Deb's insurance plan the possibility of a third stem cell transplant.

I asked if he thought the third stem cell transplant was critical enough for us to begin liquidating in order to self-fund the procedure. He said 'let's try this month on the therapy and then re-test. We'll cross that bridge when we get to it.'

He also marked Deb's records to go before the entire staff next Tuesday to discuss her case in detail with doctors, researchers, etc. to confirm that we are on the best track for Deb. That is so encouraging because many doctors are little 'gods' in their own minds and do not want anyone else's thoughts and certainly no questioning. You should hear  the stories we have heard from other institutions! Not UAMS! This is an amazing place!

We got to ask about the meaning of 'Salvage therapy' that he had suggested for Deb. Doc said the term means that 'front line therapy has failed and you must use a secondary therapy.'

So, we are happily returning home for a month of weekly chemo. We have to pick up a load of prescriptions and co-ordinate with the Ga clinic.

Plan is to fly home in Redbird tomorrow. You can follow us on  www.flightaware.com . Use N680V for the N number.

We are emotionally drained after today and look forward to a good rest tonight. We are so grateful for the report.

Blessings All!

Weds-Testing, testing, testing + a gift!

A few weeks ago we posted a photo of a large piece of glass artwork that was on display at UAMS. Miniature versions are available in the UAMS gift shop and some wonderful gift angel sent word for Deb to call on the UAMS gift shop and pick up an unknown gift. Well, Deb went and this is what she was given!

Thanks, gift angels!

It now resides on our Arkansas mantle.

Yesterday was truly a 'testing day'. Deb had to fast for the PET, then had a bite of late lunch, then many hours of MRIs. We walked out about 10 PM central time. Deb was sore from lying still so long!

This afternoon we meet with Dr van Rhee. We hope to have a decisive plan of action. We are praying for remission!

We met new classmates from Alabama, Arkansas and two couples from Tulsa, Ok. We had the two couples from Oklahoma sitting on either side of us and they did not know one another. How amazing is  that?

More news when we get it.

Tuesday Bone Marrow

The nurse that supervised Deb's Bone Marrow Test today is from Macon, Ga!

This test is the only one that Deb really openly dreads. She handles all others like a good soldier, marching boldly forward. But, as a veteran of many bone marrow tests, she has experienced the bad and worst! She truly dreads this one!

We had a good group of classmates in the waiting room this morning including an oncologist from Spartanburg, SC. who is himself a newly diagnosed myeloma patient. We had a couple from Mississippi, one from Alabama, one from Virginia, and one from Chicago.

It is always the same: where's your home? How long have you been coming here? Been treated anywhere else?  Who's your doctor? How did you get diagnosed?

That last question is always the most interesting. Most classmates were mis-diagnosed with something else first because multiple myeloma is so rare. Many doctors are unfamiliar with it. Most classmates seem to have gone a while without treatment because of the mis-diagnosis until their symptoms continue to worsen and force another diagnosis. Broken bones and anemia are common. Back pain is common.

Everyone in the room agreed: they do not enjoy bone marrow tests!

If you want to see the procedure in detail, there are pix and a very graphic description earlier on this blog.

Weds brings MRI's. Many hours in the noisy machines for Deb; some lying on her bone marrow wound. Then PET scans. More lying in noisy machines  and including the yummy radioactive sugary drink.

Thursday afternoon we finally meet with Dr vanRhee for his ideas about Deb's next steps.

Then ???

Monday

Short Report: Deb began her testing this afternoon. We had severe weather warnings and more bad wx coming our way. It sure reduces our stress levels when we are already here for the tests. More to follow.

Back in Arkansas Sat Afternoon

Click on to enlarge

Original plan last week was to try and get the Monday tests moved to Tuesday. The scheduler worked several days last week trying to make the change. No could do!

 So, the next plan was to leave Ga Monday after lunch. The weather maps above show why that would not happen.

So, what's a fellow to do? Come back on short notice on Saturday afternoon to  avoid a ton of heavy rain, lightning, and thunderstorms!

Anyway, here we are! Back in Arkansas! Tests begin Monday afternoon.

When we arrived, Deb asked to drive to the car to the condo. She did real well. Then we went to Red Lobster to celebrate.

Deb felt very good today and is very hopeful that means her chemo has improved her health situation. Guess we will know on Thursday when we meet with Dr vanRhee and a stack of tests.

We came today in the 2 seat smaller airplane called Redbird this time. I finished her  in 2005. Redbird had it's old engine and prop sold off for an upgrade about the time of Deb's initial diagnosis. She sat forlorn and unflyable for several years until the new engine could be overhauled and installed, along with a lot of fiberglass work, paint, etc. The final upgrade was to upgrade the instrument panel. Well, a small group of airplane angels pitched in and got it done! Thanks to all, especially airplane angels Jon, Dave, and Waldo! Thanks guys!

Home Again! [Georgia}

We got back to the Falcon Field Airport about 8:30 pm. We were met by some airport angels. Friendly faces and help unloading is so wonderful!  Thanks, angels!

Pilot angel Dave flew his airliner 5 hours from central America this morning, drove to Falcon Field and prepped Gracie, flew 2.5 hours to Arkansas , and then 2.5 hours back. He surely has a sore bottom and probably does not want to see a plane for a few days. Thanks Dave!

Tuesday-'Buzz' + News

The chemo has been doing a job on Deb's hair. Her pillow has had as much hair as her head. Her clothes were covered. So, being very brave, she had me take her to a walk-in hair cuttery after we left the clinic. The gal first started buzzing with a number 4 cutting guide. Deb stopped her and said cut it closer. Here she is modeling her new doo.

Deb was born with thick straight hair best styled in a precision cut. After the last chemo, it came back soft and curly. So, any bets on how it will come back this time?

Today was supposed to be a 'see the doc at 10am, then go home.' It turned out to be a long hard day and the doc we were scheduled to see did not show so we got to see a new doc. Then we were sent over for labs because in order to remove a line, the platelets have to be 50. The nurses seriously doubted that Deb could muster a 50 based on where they were yesterday. They ordered matched platelets so they could give her the IV so the line could be pulled. They gave Deb the pre-meds for the IV. We waited. And waited. Eventually at about quitting time the labs came back and Deb's platelets were..exactly 50!

So, out came the central PIC line! Cleared to come home! PTL!

So, how does the staff get meds from the pharmacy to the twelve floors of the Rockefeller Building?
With a computerized dumbwaiter system! It automatically shuffles the bins of drugs off at the correct floor. Cool, huh?

A local artist has made this large glass artwork as an inspiration for patients. Miniature versions are available as a fund raiser.

So, Gracie the plane is in Peachtree City. Darleys are in Arkansas. So, pilot angel Dave flies in from Central America about 1 pm tomorrow, drives to Peachtree City, then flies 2.5 hours west to pick us up. Thanks pilot angel Dave!

We got a schedule today. It's not what we were expecting. We have to be back in Arkansas late Monday afternoon to begin the testing that Dr van Rhee will need Thursday afternoon to guide Deb in  the next step of treatment.

Our desire would be to get back on a maintenance chemo schedule in Georgia with periodic checkups in Arkansas. The scheduler at the clinic is contacting other patients to try to get a trade so we do not have to be back until later next week.

Blessings! 

Monday Update

Deb's labs came in good today and we have been referred to the doctors in the Myeloma clinic tomorrow at 10 am to see if we can return to Ga for a while. Dr van Rhee is out of state and  the plan is that we would return to Arkansas next week for the whole battery of tests and then meet with Dr van Rhee to determine our course of treatment.

So, stand by for news on that front!

In other news, Happy Birthday to Katka in Belgium! Katka is son Trey's Czech wife and the mother of our grand daughter Evelyn.

Here are some pix they sent us! Click on the pix to enlarge.

Sunday-Numbers Going Up!

Kathie and Rick joined us in the clinic waiting area. Note that Ga Bulldog shirt ! Kathie was super brave to enter the 'hostile' Arkansas 'Hog' territory. Kathie's father lives in Macon, GA and used to hang out at the Darley family home airport-Herbert Smart Airport. Vern's family members probably knew him back in the day.

We parked next to a Bibb County Georgia car today in the parking deck.

Deb left with another bag full of infusers-phosphorus, potassium, and antibiotics-which we started right after lunch-out at Frankie's Cafeteria! Yes- Deb's white count was high enough today to go into a public place! She was so happy to take her mask off.

Plan is to continue getting labs and infusers as needed and get on the test schedule so there will be max info for the doctor to look at as he maps out the road ahead for us. Hopefully all that will occur early this week.

They nurse had Deb's meds all laid out this morning. This helps speed up the day.

The day started up pretty good for Deb and she was in and out of the chemo clinic in a matter of hours. Her white blood count came up tremendously to 2.76.  3-12 is normal. She still needs to avoid crowds and wear her mask another day or so until she is fully recovered. We have three infusers of strong antibiotics to get us through the night. They are giving her gut distress and general miseries. She can't wait to be unhooked from meds. Of course, 'nurse' Vern gets tired of hooking and unhooking them.

The fittings on the lines must be sterile since they connect directly into her heart area. No germs allowed! Alcohol pads are used to clean up a fitting. You scub while you sing Happy Birthday twice. When removing a line you have to flush it with saline then Heparin, which keeps the blood from clotting.

Today we met and visited with a couple of classmates who moved her from Southern France. They were Americans who retired at age 50 in a small town near the Spainish border. After getting treated for myeloma in France, they were eventually referred to the UAMS clinic. After deciding this was the place for them, they moved to Arkansas and bought a place here.

We sat in the cluster with our friends from Chattanooga, the Hietts. The father, who is approaching ninety, is a WWII Army Vet. The son, John, who is  the patient, is a Vietnam Vet who retired from the Navy. His mom is a British War Bride. John's cousin is from Macon, Ga and comes to caregive on rotation.

Tomorrow-8 am in the chemo clinic after a night of infuser changes.

Blessings all!

Friday-Looking Up!

Last night Deb had no fever and slept fairly well. What a blessing!

We got the labs today and found that Deb's immune system improved. The small movement typically indicates good days ahead. The APN talked to us about more tests and an appointment with the doctor next week to plan for future treatment possibilities.

In our minds and dreams, we could see ourselves back in Georgia in a week or so. However, until we meet with the doctor, that is only a dream.

We had a good chat with the new APN who had spent the last 15 years in the local heart hospital helping with heart surgeries. She said that lately she had participated in a heart transplant about every three days and that many of the meds used to prevent rejection of of the hearts are also used in multiple myeloma stem cell transplants.

Deb had a much better afternoon. We have four infusers and a bag of pills for tonight.

Blessings all!