Friday-another long day!

Deb in the waiting room before all the action 

We've had two long days and are very tired . We enjoyed hearing from number of friends and family via email and phone today. It's so good to hear from home. The mundane events in your life are music to our ears here so far away.

The two most awkward places on earth for me are hospitals and funeral homes. I do not know what to say or do. But, there is a huge ministry of presence in just being there. Do you agree?

We started out with a priority 07:30 am appointment to have Deb's line installed. There was a large room full waiting for procedures. Deb was served by the most gentle and kind team. UAMS must do some kind of testing to get such wonderful staff!

Deb's chemo clinic appointment was at 8:00 clear across campus. We got there about 9:30am.

Hal and Deb

On the way we bumped into our Athens, Ga classmate Hal. He was here for chemo also.

Yesterday it took the Dr and APN some time to construct Deb's unusual dosage of chemo and support drugs . Today the administering nurse almost swooned trying to interpret them and get the order right. First off was huge 200 mg of Dex. Most previously was 20 MG. Deb is wired!

Some chemo had to go before others. Some had to be by themselves. It was complex and occupied about 7.5 hours in clinic to administer. Deb has permanent single port in her chest wall. She had a double port installed in her arm today. So, three ports for a stack of chemo bags!  Then, the two lines from the 24/7 infusion pumps had go be plumbed.

The Bag

The tubing's not long enough for us to be more than 2 feet apart. I have to carry 'the bag' as we call it because it exceeds Deb's load carrying limit. We try not to snatch or hang the tubing. We end up doing pirouettes to get into car or chair so the lines stay oriented correctly. Sort of a chemo ballet, but not very graceful!

Deb with the Bertrams

With the bag hung over her IV tree, Deb made many trips to the Lou. Coming back she passed a couple who recognized her from this blog. They introduced themselves as the Bertrams from Cullman, Al. Welcome classmates!

Peggy examines Deb

Peggy was our excellent APN today and helped Deb a lot. Thanks Peggy!

Deb has been relatively pain free and off the strong pain killers she once was on. The rapidly growing cancer in her sterum has begun to hurt and she was advised to begin pain killers again. She doesn't want to use them but will have too for a while. 

Tomorrow starts it all over again at 8 am.

Blessings all!

Results of testing: Not so good

July 19, 2012

Our day started at 4:30 am this morning with a 5:15 PET Scan. It ended as we walked out of Dr van Rhee's exam room about 7:30 pm.tonight. The news was not what we had hoped for. Bottom line: Immediate action required: Deb has the first appointments in the morning to have a line installed and a full day of strong chemo. 

Dr van Rhee

Before each visit, vital signs are checked once more.  After that we were sent to wait in the exam room. Diana,  the transplant supervisor came in to talk about the possible Killer Cell transplant and give us more paperwork. Then Dr van Rhee came in and logged into the hospital computer system to look over the MRI and PET scans. We could easily see that  the lesions on the breastbone had greatly expanded. He showed us that the cancer had grown from the interior of the bones to the outside surface of the bones.  It had grown from the lower range of the breastbone to the upper part near the chin. No doubt that in a months time, even with weekly chemo at our local hospital, this cancer had spread. Dr van Rhee called it 'aggressive, high risk.' We could see it with our untrained eyes.

Dr van Rhee proposed a 2 step plan:

1-Stop it and shrink it as much as possible over the next 3-4 weeks

2-Use the month  to determine the best of these options

He said these were solid options to consider:

A-Polimides

B-One of the new experimental drugs in trials 

C-A third stem cell transplant

D-Carfilzomib + a cocktail of other strong chemos

E-The killer cell experimental program

He reminded us that Deb's body will only tolerate so much chemo before organs are greatly damaged. Eventually the toxicity and infections could kill her. The immune system takes a real beating.

Option E is his most favored option we felt. He is the head of that test and very familiar with it. He said it either works and puts one into extended remission, or doesn't work at all. 

We had a whole list of questions about  this option. It would require one of Deb's children to come to Arkansas, have blood tested and matched, have a line put into their neck like Deb uses for chemo, have their blood circulated through the same machine that is used to remove stem cells. Certain cells would be separated out and sent to Baylor University science labs for growing them into greater numbers (cell expansion). Meanwhile, Deb would receive a number of chemos and treatments here in Arkansas to prepare her for her immune system to be destroyed. Then the expanded cells would be injected back into Deb and given special meds that would cause them to expand even more and preform their natural function of seeking out and destroying cancer cells. Fun for all!

We have about a month to decide. We appreciate your prayers.

It took a whole team of nurses and schedulers to put all this together so late in the day. We sensed urgency.

Tanya makes some amazing scheduling for Deb

Diana,  the transplant supervisor

Nurses check vitals 

Kelli, our APN

Weds-Artshow with your Chemo!

The whole lobby of the Rockefeller Center was full of artwork by/for/about cancer patients. Deb, who is a very good artist, enjoyed looking these prints over. Here you can see her new yellow hat made for summer operations: like the 105 feeling outside today!

We had a long session at the Jones Eye Clinic checking out the eye damage the cancer/chemo might have caused. Deb got a fairly good report after excellent care by 2 docs and a tech.

Then back to the MRI area. Passing by the grand piano in the lobby we enjoyed chatting with one of the volunteers who comes every day to share their talents. The sound of that grand filling the twelve story atrium is...well, grand!

On another note, some of you saw the pix of the pix  of the seabird in the marshes of Glynn, which is a poem by the poet laureate of Georgia Sidney Lanier. At least one dear reader thought we had named the Bird in the photo 'GLYNN'. Guess I need to edit my posts more carefully!

Finally we were done and could get away from the UAMS campus. Deb was hungry, so we tried a local spot we had never been to before. We always wondered what a purple cow tasted like, so we found out! Just like a black or brown one!

Tomorrow we start with the 5:15 am PET, which is another nuclear test where Deb will be injected with another radioactive substance and get 'to glow' for the machine. Now can you understand why Deb always has a certain glow about her? Her complexion has a half-life! (a radioactive term) That quality is never mentioned at most cosmetic counters.


Another of our prayer angels sent us this blessing. Would you join him in prayer for us tomorrow? Thanks!

This prayer from Ephesians came to mind today as I prayed for you....

"For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love,  may have power, together with all the angels and saints  to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge —that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."


Tomorrow afternoon we meet with Dr van Rhee to map out our next adventure. Wonder how it will turn out?

Blessings!

Tuesday Tests plus a test for You!

When we finished the first MRI we went to registration to pick up our paperwork. We met new classmate there from Arkansas-Norma Jean and Rick. Norma Jean has multiple myeloma.


Next stop-blood tests. Today was a record. They pulled twenty tubes of blood. The purpose is to qualify Deb for the experimental program she's been invited to consider-the Killer Cell program. More on that Thursday afternoon.

The lab is where the 24 hour urine samples are turned in. These containers are like pink elephants in the room-hard to miss in spite of the attempts of classmates to carry them around in all sorts of disguises.  One classmate told us a funny story about how they were flying out of a commercial airport and were at the ticket counter when they sat their jug down to do paperwork. They were using a department store gift bag to haul the jug in. It was stolen while they were at the counter. They had a huge guffaw thinking about the thief's surprise when he looked at his haul!


We look for humor anywhere we can find it!


Deb has been out of the house very little the last month so when we had a few extra minutes before our next event , she headed to the hospital gift shop to look for a cooler hat. The one she brought is better suited for winter operations.

She found one for me also!

Finally we headed to the nuclear medicine area for the MUGA test. This test determines Deb's heart health. Remember this symbol? 

We bumped into a favorite nurse who has cared for Deb many times, Shelia. She is the nurse for the Gamma Knife system I've described before. Today she was working in the MUGA  area. She had some very encouraging things today about the Killer Cell program. We need to hear more of that!

They took a 21st tube of Deb's blood and mixed it with a radioactive  solution. After about a half-hour, they gave the blood back to Deb and took her to the big machine to photograph her heart.

While Deb was lying still and quite bored, I read an email from my cousin Debby Wilson. As I read it to Deb she began laughing and I had to stop or the test would be a bust since she was jiggling around so much.

Deb makes a salad in own condo kitchen

Today was the PET scan day.  Deb had to fast many hours for that test. She was hungry all afternoon since one of the side affects of her meds is hunger. The hospital called and moved the test back to 8:30 pm tonight. Later, they called and said the PET machinery needed repairs and they moved the PET Scan to 05:15 am Thursday morning. We see Dr van Rhee at 4 pm Thursday.

Tomorrow, Tuesday, we have a 7 am MRI. Then registration paperwork, blood tests, urine, an EKG, then Nuclear Medicine for a MUGA test (Cardiac Output Study). 

Weds we start off at the Jones Eye Institute to determine how much damage the cancer and chemo have done to her vision. Her hearing has been drastically affected and she has exotic (and expensive)  hearing aids. Later Weds  there are more MRIs of her Bone Marrow Blood Supply bones.

And that brings us back to Thursday for the PET and consult with Dr van Rhee!

Vern paddling in the marshes

SInce Deb could finally have some supper tonight, we made an organic salad in her condo kitchen. It was de-lish! It is so good to have a place to call home while we are in treatment. We are beginning to add small touches to remind us of the good times in life. Here are a few large pix we hung. They are from Deb's favorite place on earth-St. Simons Island, Ga. As a teen Deb was counselor at Epworth-by-the-sea, a Methodist campground located near where the John and Charles Wesley were serving the early settlers and Indians while Georgia was still a colony.

View in the marshes of Glynn

When we arrived back in Arkansas our small mailbox was stuffed with mostly junk mail and a few very special encouraging notes. Thanks encouraging angels! 

One of the items in the mailbox was a small book to give Dr van Rhee. It is a bio of Dr Denis Burkitt, an award winning cancer researcher who was a pioneer in the use of chemotherapy and diet. He even has a form of cancer name after him-Burkitt's Lymphoma.  

Dr van Rhee is a noted expert on the Epstein-Barr induced lymphoma. We talked to him last month about the work of Dr Burkitt . He quietly told us that his own father had died of Burkitt's Lymphoma. He was eager to read about Dr Burkitt's work and we plan on giving the book on Thursday.

If you are interested in a wonderful small book on a Godly Christian Medical doctor who made a profound contribution to healthcare get a copy. The title:The Fibre Man, the life and story of  Dr Denis Burkitt by Brian Kellock. It was published by Lion Publishing.

Blessings!

Safely in Arkansas

If you've watched the weather the past few weeks, you noticed it has stormed a lot in the Ga-Arkansas corridor. Today we had storms north, south, and west of our route.

Deb enjoyed the clouds that we were in and out of from western Alabama to Little Rock. She pictured all sorts of things in the cloud shapes. She saw valleys and mountain peaks, and squealed with delight at the sheer beauty of the clouds. I've told her about the aerial beauty many times before but today 'she got it.' That brings joy to my heart.

Birmingham in the distance

As we flew west the weather got worse. We had to perform an instrument approach down to just above minimums. It was wonderful to break out of the clouds and see the runway right ahead of us.

Deb was able to drive LWC to the plane while I refueled it and put it in its hangar. We had lunch then went to the condo. It was extremely hot and because the air conditioner was inop. So, first thing Vern had to put on his trouble-shooting hat and get it going again which took several hours.

Redbird's panel

Testing begins tomorrow. It will be an important week for us.

Heading back to Little Rock Sunday am

In the morning we are heading back for a week of testing. We have had a wonderful month at home.

Many folks are eager to travel, but Deb and I enjoy being home and following our boring routine. It sure beats living out of a suitcase wondering when and if you will ever be home again.

We meet with Dr van Rhee {that's the way he writes it} late Thursday afternoon. We anticipate a very serious decision about what is next for Deb's treatment. We covet your prayers.

Blogging for us is basically describing our daily lives. When there is a lot going on, there is more to write about. When not much is going on, there is not much to write about except the weather. {been hot and wet lately-how about yours?}

You can follow our flight at www.flightaware.com  Use Redbird's N number-N680V.

Blessings all!

It's been a quiet few weeks since we got back from the last Arkansas trip. Everything revolves around Tuesday chemo each week.  Goes like this: Every Tuesday afternoon we go to the local clinic and Deb gets blood tests and a mini-physical with the doc. If her numbers are acceptable, she gets chemo. Then she spends the rest of the week resting and sleeping a lot getting ready for the next week. Very little time outside the home and going virtually no where.

So, how does the very sociable gal stay in contact with her world? Her iPad and iPhone! Here she is getting her daily bedtime call from grand daughter Ellie. They use FaceTime which is a video talk between the two.

For contact with her European grand daughter, she sometimes uses Skype, but mostly the phone.

Here's a photo of our Belgium grand daughter Evelyn strolling thru Brussels with her friend.

So, what's ahead?  This time next week we will be heading back to Little Rock for a week of tests. Then we have a conference with our doc to determine what's next.  Our hope and prayer is that the home chemo would have shrunk the lesions so we can continue with local Georgia chemo. Otherwise, we will be in what is called 'salvage therapy.' That means normal treatment plans are not working and they have to seek something unusual to keep Deb clicking.

Join us in that prayer? Thanks!

Happy 4th of July!

Yesterday Deb had her weekly chemo. Nurse Caroline helps Deb so much!

Today I cooked Deb a special 4th of July burger which she enjoyed very much.

We head back to Arkansas around the 16th for tests, a conference with Dr van Rhee, and making a very important decision about future treatment.

In the mean time, son Trey along with grand daughter Evelyn and grand dog Nadia take a stroll in Brussels.

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 ???