Breathing exerciser-the pickle

Monday Afternoon

Hope your holiday has gone ok.

Deb seems to be making steady progress. Her temp has been normal all day. The Dr was positive in her remarks. Although they had been trying to avoid steroids, the Dr said she had to have some.
Tomorrow they start the count to see when Deb is ready for the stem cell collection. That seems like good news to us.

I took a break and went to the hotel to shower and get some clean clothes. I got Chris to drop me at a Mexican restaurant for a much needed hot meal. I am so tired of the little hospital snack bar...especially on a holiday weekend. On the way back we collected some more classmates. Israel had his first collection yesterday and only got 2.8 million cells.He was very disappointed. We dropped him off for a second collection.His son David went home to NYC. The ladies from the Bahamas are doing well.Their insurance company actually required them to have a caregiver.

Iva is still in the hospital. She has been here over a week.The Thai family is still being cared for. Their grand daughter who is 32 complained that she has a poor social life here. Everyone thinks she is twelve. Of couse hanging out with 85 yr old grandparents is not so cool for a big social scene of 30's.

Deb says God has been with us thru every setback and will continue to carry us thru..Thanks for your prayers because there are times we are not able to pray for ourselves.


Vern

Monday morning

Deb had a good night. Fever is way down.still coughing like a banshee.

Haircut!

Guess what else Vern added to his list of firsts?

Before I started,I asked Deb to make me a promise that no matter what, she would not hide under the bed.

Curious?

Years ago we had two cats: sisters.One was short haired and skinny, the other long haired and fat.Because of the hot weather, we gave fat cat a haircut. She was so ashamed of Her doo that she ran and hid under the bed for days. I really did not want Deb doing that!

So what is her condition?

Fever persists: over 102. Chills,hot and cold cycles,weakness

The Dr said that if her body is ready to collect stem cells this week, we will collect. If she is too weak,they will wait a few days to strengthen her body. If she stays too weak to collect,we will go home, come back in a few weeks and start over.....at the very beginning!

Now younknow how to pray!

Vern and Deb

Sunday morning

Deb still has a fever but it is somewhat lower than last night.She is coughing incessantly,has wheezes in her lung. Nurses are giving her breathing therapy right now.Deb is in good spirits and is still practicing complimenting the staff. A humble staff member came in to bring supplies and Deb complimented her smile and work. The young lady lit up like a Christmas tree. She probably never gets compliments. Deb has done that continuously among those serving her. Her character shines thru her pain.

Now the physical therapist is evaluating her needs. Breakfast is waiting until the staff gets done.

We talked to Trey this morning.We got an IM from Amanda.
Labs just got here and her white blood cells are up and the infection risk is too.

We have a beautiful view from the seventh floor.At sunrise a hot air balloon quietly passed by our window.

Blessings all.

Contact info is in the right column

Vern

Update- Sat evening

The night shift nurses came on and they are wonderful.

Deb's fever is down to about 101. Much better than the 103.9 !

She is setttled into her hospital bed hooked to a myriad of tubes and monitors. I have laid claim to a dorm-style pullout bed next to her and even have sheets and a blanket.

She still has ice packs and they are hoping the fever continues downward.

There is a delicate balance to get the fever down but not quench the stem cell collection process that we are heading toward.

Deb ate some veggies and bread for supper and is on oxygen.She is coughing and Doing lung clearing exercises.

I was amazed at how rapidly the pneumonia developed today. In a three hour span she went from happy as a clam to true misery. The 33 year veteran APN was very savvy at seeing the need to act decisively.Compared the the sweeter new(and inexperienced) APN the days before, I prefer the tough old veteran.

Deb' s beautiful and all natural hair is coming out like a dog with the mange.Her father died of a radiation from Oak Ridge during WWII cancer. He had straight so-so hair but when it came back, it was beautiful and wavy.Wonder how Deb' s will come back?

Thanks again for all the support and interest so many are showing in us! Blessings all!

Deb says howdy.

Vern

Be not afraid!

Although I posted the facts, please do not react in fear, no matter how they sound. This blog is meant to give the latest accurate information, and how Deb and I are emoting and observing. We desire that those like us who are prayer people pray intelligent targeted prayers, not generalized 'bless me Lord' prayers. (although we won't turn those down in addition) We are trying to operate from faith, not fear.

So, as this battle wages, just like in all battles, there will be ebbs and flows; successes and failures. I just am trying to share them. But, fear or sensationalism is NOT a goal.

Vern

Treating Deb now

Temp is 103.9

Breathing treatment

Now in hospital room

Until now all the treatments in Arkansas have been outpatient. Deb has
been admitted inpatient for pneumonia and sepsis( bacteria in the
blood).she is lucid but tired and weak. I do not consider it a setback
for stem cell harvest according to the APN here. The room is very nice
and the nurse and Dr are doing in process now.
Deb is now in bed in her new room.
Plan is to stay here until she recovers from 2 maladies. Vern
Sent from my iPhone

Alert-hospitalization

Deb is being admitted full time hospitalization. Her pneumonia is
worse. Lung specialists evaluated her gases and lungs.Standby for
details when we get settled.breathing painful

Vern

Sent from my iPhone

Sat 9:30ct

In clinic bed,fever, pneumonua,wheezing breathing,three iv's hooked
up, getting blood and antibiotics. Vern

Sent from my iPhone

Saturday morning in Arkansas

Deb hacked all night. She has a moderate fever this morning so I anticipate a long day at the hospital.
More later.

HAPPY BIRTHDAY COL. VERNON .O. DARLEY

My father, born on this day May 29, 1925 in Harlem, Ga just outside of Augusta,Ga. Happy 85th Dad!!!!!!!!!!

Friday night-the end of a crazy day!

We started early and ended late. Per the schedule,it was to be an easy day for a tired couple.Per reality, it was a long hard day! But, we made it and are preparing for bed.

There are no changes in the schedule at the hospital because of the holiday. In fact, the myeloma clinic never closes.So, eight is our showtime.

We are delighted by the Dr's report. It is encouraging to get a progress report that actually indicates progress! Some of our classmates are not so fortunate. Some are too old or sick to endure the full treatments. Some don't have insurance, or enough insurance, or can't get approval out of network, or have just become weary and want to go home and live out their days in familiar surrounds.

Back last century I had a saying as I served as an Eastern Air Lines pilot: Everyone has a story: no one buys a ticket and rides around without a reason. Same here: none of our classmates are here for the fun of it.

Deb's'meds are beginning to kick in and she is getting a deep productive cough. Her infusion bottle is about empty and in a few minutes I'll be grabbing the saline and herparin needles to clear her port that connects at her heart. It's still scary for me!

Dr. Nair gave us our reports. The philosophy here is to use the team approach with the Dr monitoring our progress via the great online data system, the APN's (advanced practice nurses) coordinating with the Doc to make sure his orders are carried out, and the nurses seeing us everyday to issue meds and do labs.


Deb is having more and more trouble swallowing so today the APN re-issued some of the prescriptions so less pills have to be swallowed and the meds will come via IV. I had just completed a pill sort for the next seven days, wouldn't you know it?SO,I have to go back thru and pull some pills.

My system is to take the Doctors orders and use small zip-lock baggies for the four daily support pill times. There are also pain med pill times which occur nine times a day.So, that's thirteen pill pops scheduled plus occasional special needs.


Then the nurses get a shot at Deb.They have all sorts of goodies to throw her way!

Our Thai classmate is not doing so well. She is too frail and old for the max treatment but her mind is so sharp! I enjoy conversing with her.

Antoinne, the seven foot tall size eighteen shoe driver told us tonight that he would be leaving in a few weeks.He is heading to an entertainment position in The Magic Kingdom in Orlando. So, many of you may get to meet Antoinne but not recognize him in costume. He has a powerful deep voice. Perfect for a haunted castle,etc.

We meet a very emotional lady/daughter here on their first day. I tried to help steer them right.They will be staying at the Markham House where we are.

Israel and son John were with us several times today. I helped them arrange a very early pickup in the morning. John and I had a short discussion about the section of the Law he and his dad are studying. John pointed out that as Jews they honored the Sabbath and he and his dad were studying the Hebrew OT to learn their limits on employees working on the Sabbath who are not Jews.He said the law did restrict them. Israel is starting to collect stem cells tomorrow and Sunday. I wonder what the Law says about collecting stem cells on a Sabbath?

Another classmate is a short, hunch-backed 58 year old man from Dallas, Tx. He is a prosperous businessman and has his own Beech King Air 200 airplane. He was getting picked up here tonight and flying home tonight, returning tomorrow afternoon. He said he loves football and had been negotiating his treatments with the cancer doc so he could fly to a college game he wanted to see. The doc said that doctors who negotiate with patients end up with dead patients. Point was taken.

This weekend there will be many activities but Deb and I will maintain our exciting hotel-hospital-hotel routine. It's one step above house arrest I suppose! At least we are beginning to talk about coming home! When we return, it should be much easier since we will know the players, the place, and the plot. Hearing Doc tell us someday that Deb is in remission will be sweet words indeed!

For those waiting on an answer or post from Deb, the chemo brain and shakey hands don't allow her to do much except absorb meds and needles. She does read them but doesn't answer many.


Thanks everyone for your support as we travel this road. We appreciate each of you! Come to our 120th birthday party later this year and celebrate all our lives.

Blessings and especially for veterans and families of veterans!

Vern

Dr. Nair report

In spite of the pneumonia and the extra meds, Dr Nail reports the the labs indicate that approx 80 percent of cancer cells have been killed off.That is wonderful news and does not mean we are over this. Still much pain and treatments to go.He says white blood cells have hit bottom and are now recovering.At this rate we have the stem cell collection later next week, meet with him,then come home for about three weeks. Ct scan shows cancer spots fading.

Then we repeat all.

Very encouraging report and Dr says Deb is doing very good.

PTL'!!!!!

Going in to see dr, then back to cancer center for more ivs.deb is very emotional right now

Sent from my iPhone

Pneumonia again

New meds,inhaler,etc

Doing breathing test now

Friday am

Yesterday Deb had lot's of antibiotics.This morning Deb beat me up (got up ahead of me).She was sitting in her chair and had explored all the carefully arranged pills looking for morning meds. She is feeling much better but still has chemo brain.She ate a good breakfast and during her stand up at the sink hair wash with a clothe covered in shampoo,we both were surprised to see wads of hair coming loose. We knew it was supposed to happen,but today it did.

So now we are getting more antibiotics.At noon we see Dr Nair.

There was a new driver on the hotel van. He graduated from Clark Atlanta College.

Several new classmates arrived. A lady from Washington,DC who had tried to get into Johns-Hopkins unsuccesssfully for ages,then called here and was accepted immediately.The other two ladies are from the Bahamas.

Several staff members are involved in the move from the present facilities into the new glass skyscraper next door. They really are building a cancer- fighting center here.

BREAKING NEWS:Respitory infection.APN on the way to explain.

Vern

Comfort machine

There is an ice machine and a blanket warmer in our area. These warm blankets are a tremendous blessing. Deb typically uses four each visit.

Thursday night

Finally got home. Deb enjoyed supper so I think my job's secure...for now!

She's doing much better after spending 5-6 hours today getting various IV's. It's amazing what meds do.

To all the docs,pharmacists, assistants, and nurses out there...THANKS! We Appreciate you and your ministry of healing and care for us.

I've never spent much time around hospitals and this experience has been eye-opening. Here I've seen a steady stream of hurting people. All day long! Where do they come from?

It really makes me grateful for living in this time in history and for the technologies. I'm so thankful for insurance.

It makes me even more aware of the foundations for good health (or bad) that are laid in our younger days. Of course a 20-30 year old can abuse their body during those younger years. Drugs, alcohol, over-eating, back strains all pay their affects starting in the forties and really getting going in the fifties. That's when so many people start exercising,dieting, reading health books, joining gyms,taking vitamins,etc. If only those in the 20-30 age group would learn, think of the better lives they would live.

Perhaps I've quit preaching and gone to meddling? What do you think?

Vern

Deb approved this!

Thursday afternoon

Still fighting the fight.Deb and I had 2 hours at home for a snack and short nap.I laid down on the couch beside Deb in her recliner chair. When I woke up, Deb had gone to the bedroom with sunlight streaming in the window,confused about the time,and undressed by herself and crawled into the bed for the night. She was slightly ticked when I woke her to come for our afternoon appointment.

It's been a tough day. I've been fired 3 or 4 times I think.

Put on a pot roast for supper.Maybe Deb will hire me back if she likes supper?

We have an appointment with Dr Nair tomorrow.Hope he has good news.We are due some.

Deb continues to talk to unknowns and sometimes to me. It's tricky to know who she is addressing.

Alert-Mid morning Thursday

The APN was just here.Deb has a crackle in her lower lungs via stethoscope. Therfore, we will get a ct today. Additional antibiotics will be given.Some here at the hospital and two per day that I will have to give via the port.Mouth sores moderate. We are also getting a viral swab to see what the source of infection is.Standby for updates.
Vern

:::::::::::::::::::::::::::::::::

Just added more platelets to the morning rations. The hospital has a roving food lady who just came by.The nurse approved a pimento cheese sandwich.Deb ate half.She looked over at me and said "it's not as good as mine." I agreed and said that's true,but your's is harder to get.

Nurse just came back and added another antibiotic until June 3d.

Remember the old Kingston Trio song about the fellow who rode the train' neath the streets of Boston' ."will he ever come home,will he ever come home?"

Our day and med bag just keeps expanding,but I am so grateful to be able to dedicate ourselves to Deb's healing.

Deb just started teaching a math class. She was looking at Allie's homework. Sounded as if she were in the classroom! Strange!

Thursday am-fever!

Deb is very draggy this morning. One of her first statements to me when she awoke was " why don't we sell some US savings bonds to pay off the national debt?". Sort of an unusual morning greeting, don't you think?

Slight fever last night. Nurse just said she is getting some very strong antibiotic this am along with an iv for BP low. The drip will take 2 hours because Deb has to get it slow to to test for red man syndrome. Apparently it causes a reaction in some people.

The crazy talk continues. She walked via walker to our thermostat in the room and was mad because it was on 91.(it was 71)

She talked a lot of the night to unknown parties.Perhaps you were chatting with her?

Vern

Weds evening

We ended up getting platelets and an IV because of low BP and the total lack of energy Deb has now. She is about at the bottom. When we got back to the hotel, she could hardly push the walker.I tried to talk her into using the wheelchair. I've never seen her with less energy including after giving birth.She's now in her chair and eating a pear. It has to be peeled after a good washing. She can't handle any germs! She is so vulnerable! I have to guard her while she tries to walk for concern she'll fall and break something.

While she was getting her care, several nurses and I visited with David,Israel's son. David is much more social than his father. Of course, he doesn't have cancer either! David has six beautiful kids. He was really interested in Deb's iPad and enjoyed playing with it.

We watched an episode of uTube with the nurses and David. Check out
http://www.youtube.com/watch?v=Q9T8i4FkNVo for a much-needed laugh!

Israel was so mocking the recommendation to get a caregiver just a few days ago. It finally hit him, and he's about like Deb and really glad David is here now. He has been prescribed more meds.

Deb is having lots of imaginary conversations which are getting mixed up with real conversations.She gets testy when I don't jump when she speaks. Right now, I can't tell what is real. She has no antecedents! She demands 'it' or 'that'. She won't be specific. I have to guess!

Glad this is temporary.

Vern

My airplane men's group in Ptc

Guys meet weekly.

Howdy gang! Be glad to get home.Miss everyone.

Vern

White blood count .06

Very very low

Sent from my iPhone

Mid afternoon Weds

This morning and early afternoon have been much better than yesterday. Deb gets two shots per day in her tummy. They leave a 1/4" red spot. The nurses are trying to create a smiley face design on Deb's tummy. Sorry,no pix allowed!

This morning we got labs drawn thru the ports and the tummy shot. When we got back to the apt., the nutritionist called to reschedule our 2pm appt until tomorrow am. Deb went down for a nap and I made a Kroger run.

Fixed fresh salmon, wild rice, and organic sweet 'tater's for lunch. Deb ate about a half serving.

Then she had two popsicles for dessert. Because her mouth,throat, etc are very sore, she craves all things cold.

Vern

Mail Call !

My mom baked and my dad packed and shipped a supply of baked goodies. Dad turns 85 years young on the 29th! He married a much younger woman! (my mom)

Thanks!

Evelyn's latest photos

Trey, Katka, and Evelyn

Weds am- starting out much better than yesterday! Here's the pain chart they use. Yesterday was near the top.

Evening update

Got home finally and Deb is physically weaker, and continues to be confused about time and info. At the hospital she aggressively tried to 'escape' me. I had to chase her down and re-direct her back to where we needed to be.She can move that walker pretty fast! It was scary for me!

She is mostly sitting with her eyes closed mouth agape and murmuring about unknown topics. I'll be glad when she 'comes home'. Earlier today she fell asleep on the toilet and was belligerent about finishing her business so we could get back to the clinic. It's a delicate tight-rope I'm walking right now.

The nurse that calmed her earlier came and loved on her some more-see pix above. Thanks,angel nurse!

On the bus home, the Thai lady I mentioned earlier said she had been packed and ready to leave for the airport when Dr.Barloge contacted her. Tests show she needs three more weeks of a chemo cocktail he's making for her. In three attempts to collect stem cells she has not produced enough for a transplant, and at age 80, she knows it would overstress her tiny body.

On the bus we were kidding her that the good doctor's motorcycle bill is due! We all had a good laugh about that!

One of our classmates we have been sitting with daily became so feeble she was admitted to the hospital for at least a week. Her husband-caregiver made a special trip down to the waiting room to tell us.

Israel's son David rented a car so they are now traveling separately. David greets us with words; Israel mostly nods at us. In the waiting room they sit apart from everyone and spend the time in two identical red bound Old Testaments.It seems that father is teaching Hebrew lessons.David is intensely attentive to the old man. David looks to be in his thirties and runs a pay phone business in Brooklyn. Israel explained that his business was comparable to the horseshoe business: years ago there were 2,000 mfgs of horseshoes in the USA: today there are 2. I'm not convinced about that business model.

It will be an interesting night,I'm sure. Appreciate the prayers!

Vern

++++++++++++++++++++++

Note: Quiet late evening and now asleep in bed.

Alert-some troubles mid day

Deb has progressively gone downhill this morning. We had a lot of attention by the nurses and APN (Advanced Practice Nurses-'boss nurses')

First the additional IV for blood pressure, then the platelets, then they discovered she has sores from her 'rooter to her tooter' as Willie used to say. In other words, mouth sores that extend thru out the netherworlds. So, more meds for that.

Then we had an emotional breakdown when Deb found out it was morning. She had been thinking it was afternoon. She was so upset and sobbing about her mental confusion. Fortunately, an angel nurse who has taken a special interest in Deb flew in to rescue her. She ministered calm and love to Deb.

So, we are finally back at the apt and I had planned a Kroger run, but I can't leave her. She is suffering from 'chemo brain' and she is in and out of what looks like a series of short naps. I fixed her some fresh cucumber,tomato, cottage cheese salad and she put a fork load on her chin because she could not find her mouth. She also has some hand tremors.


She is also hallucinating. She dreams and is connecting events in her dreams to conversations with me and others. While ago she was talking to my sister Kay,who is in Warner Robins.

We have another clinic visit at 4 pm today.

So, now you know how to pray!

Vern

"I don't have to smile: I'm sick!" **

Starting another iv . First was saline to help low bp. Next are
platelets to build up blood.

**That's exactly what she told me in her most authoritative voice! Vern

Tuesday morning

Pain control: the topic of last evening. This has been a bid objective since we started down the C trail. Deb did have the big patches she was wearing; sort of a fabric/plastic pad with stickum on them. The ones dispensing time release morphine ended up burning her flesh.These dark crusty red welt-type rectangles are slow to heal and the ones from several months ago are still present. So we are transitioning to pills as much as possible. We have long term pain and short term pain pills. However, they have been running out before the pain has run out.That causes general unhappiness for about an hour every 6 hours.So, in coordination with our nurse, we tried some different schedules.when you are trying to administer 18 meeds, correctly, it becomes a challenge. The middle of the night meeds are toughest for me because once my sleep is disrupted, I have a tough time getting back to sleep.

At the moment,Deb is settled in a and the nurse has just started the morning routine.BP,temp,wt,etc. Then blood samples out the gazzoo.
Looks like another iv will be started to get her bp up.

Many classmates were telling their stories this morning in the waiting room.It' surprising how many were given months to two years to live locally but would not accept that outcome,so they found out about Arkansas and have been in remission and coming here for periodic checkups for years.

Monday evening:

I'm trying to feed Deb fresh organic foods,especially while she is nutropenic. Today I cooked fresh boiled potatoes, squash with onion and red pepper, and more Tilapia. Food has to be washed carefully and peeled. Ever scrub down a watermelon before cutting it? I am trying to be so careful.

Wiki def=Neutropenia (adjective neutropenic), from Latin prefix neutro- (neither, for neutral staining) and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell, in the blood. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

What's her blood doing? Todays' white blood cell count was 0.12. Her CRP was 30.5 (Normal range is 0-10 mg/L)

There was a lady on the bus whose white count was 0.1 Some people actually get to zero. Because of this, Deb is miserable and very weak and fragile. She continues to lose weight. She is noticeably more delicate and feeble.Her energy level is very low.

A classmate lady is from Austria and the first time I saw her, I thought she was a teenager because she's so petite. Turns out she's 42. She is having a lot of trouble with the treatments and is unable to have the stem cell transplants.They have her on a customized plan.

We are so tired of being here! We will be so happy when we can come home.The plan we are on is to see Deb's blood levels hit nadir {see http://www.chemocare.com/whatis/what_is_nadir.asp} and then start up. At that point there is a Doctor whose job is to monitor numbers and call us in for a port change,then at least two days of capturing stem cells. Then we get to come home for a few weeks. Then come back and repeat all we've done so far.

After that, come back for the transplants of the stem cells, come home, live happily ever after. At least that's our prayer!

Blessings all!

Vern

Vern and Deb's posts-inside info

Sometimes I post from my iPhone, like this morning. Later, I edit from the laptop or Deb's iPad. Both have larger screens.One of the clinics we frequent has iPhone service, but no Wi-Fi for the iPad. The laptop stays in the apt.

Some of the posts are done in haste to get important info out quickly and add to it or explain it later.

Occasionally I take or remember I took an appropriate photo that will help our communication and I'll add it to an older post. So, sometimes you might shake your head and say you don't remember a post as you find it. That's because I'm a current revisionist: only new events, not ancient history!

And occasionally I think better about something I've said and delete it lest I offend.

Deb seldom posts unless she is feeling real good. She is hardly able to write, and does very little reading at this point in her treatment.But, I try to read my posts to her and get her input as often as possible. Sometimes she asks me to make a post on a topic.

A cousin said this morning that she reads this blog because its like a soap opera. Hope that's a compliment?

So,that's how we are operating here on 'the front lines'.

Why are you reading it? Please respond below.

Vern

David arrives

Israel's son David just arrived from NYC to care for his dad. I introduced myself and offered to help him in any way. We are all so relieved that he is here. Israel has really needed a caregiver, but is so stubborn and ornery, saying he's OK as he totters about. Hotel and hospital staff are also relieved.They had threatened to hire him a helper. Being Orthodox Jew and having a gentile helper would not have set well with him! Probably would have been a female also!

Israel later commented to David that I was a Zionist. Never been called that before. I take it that was an explanation to David that I was OK since I am a friend of Israel.

It did impress Israel when I described my visit to the country Israel many years ago as a guest of the Israeli Air Force.I've been able to discuss openly my support for his people as many evangelical Christians are.In fact,I think there are more Christian supporters of Israel in America than the total number of Israeli's in Israel. The World bank said the 2009 population was 7,308,800.Don't know if that includes the non-Jews or not. Confused yet? Probably more than you cared to know.

Vern

News from each of you appreciated

We really are enjoying the cards, letters, emails that tell us about what's happening in YOUR lives. We have enjoyed the stories about your kids,their struggles,the job searches, others who are sick,how the squash in the garden is doing, graduations, weddings, trips planned, etc.

Please keep 'em coming!

Deb - Sunday night

Good evening, everyone. I hope you have a wonderful week. I have NO idea what this week will be like for me; but I believe your prayers are making a difference. I have been afraid of the next catheter and the harvesting of the stem cells. Now I realize that I am only doing one day at a time. One day they will come and take me to change this catheter. This is the purpose of this trip. So, I wait and trust the Father to lead and direct every day.

Guys, some of you have mentioned that you made posts that did not appear. I get all posts on my cellphone and have noticed that those posted from anonymous do not appear on the website, probably because you do not have/log in with a gmail account.

Thanks everyone,
Deb

Nurse assistant Vern

Well, tonight "what I have feared has come upon me!" Deb was hooked up to a portable infuser that is a pressurized medical bottle that infuses her for 5 hours, then I get to go thru the procedure to unhook, and clean the port that is hooked up almost into her heart.I was hoping to not have to do this!

So, as training, the nurse had me hook it up and practice the procedure I'll be doing at 10 pm tonight Ark., time.

{NOTE SEVERAL HOURS LATER: IT WENT GREAT.DEB IS SAFE AND IT WASN'T SO BAD.PTL}

Deb's White Blood Cell Count is on the way down as a result of the chemo. Yesterday it was at 2.10. (3-12 is normal.) Today it is 0.46, which means she has just about no capability to fight infections. The nurse said they often see 0.0.

That's why I have a bottle of anti-biotics and port supplies over on the desk along with her 18 other meds I'm dispensing. If she gets an overnight fever of 101 or greater,I'm to administer and call the on-call doc.

Just in case you think I'm goofing off, think otherwise!

Another number we are watching is Deb's CRP Today it was 30.10. Yesterday it was 43.5 This is a number that indicates risk of infection. They think Deb's has been so high because of the pain levels she's dealing with because pain affects these readings. Every day we get a two page summary of the lab tests. I'm a rookie at all this but do appreciate that they are into data and facts here.We file them into a binder with dividers every day. Classmates in the waiting area brag about their numbers. You'd think it was golf or bowling scores!

Watching and encouraging classmates is interesting and a part of the great lab we are undergoing. A few days ago, I had to go stand in the hospital pharmacy line for awhile. Deb grew faint and a classmate went to retrieve a nurse who promptly got Deb into a bed and monitored her. Today, that classmate's patient wife was doing poorly. We encouraged them. The scriptures say 'we should comfort others with the same comfort we ourselves have been comforted with.' I guess that's what that means?

I mentioned before that they have a great IT system that allows all the medical records to be posted or read from all over the campus. They use two software packages that I've spied out so far.One is Centricity for general medical records. The other is Web Chart for the actual Doctors orders and followup.

Tonight we met another Georgian. A man from Savannah.

Tomorrow we will conference about pain management and hopefully fine tune Deb's meds.

Blessings all!

Vern

Sunday Morning-Starbucks!

It' s a good day in Lake Wobegon. Deb had more energy and felt better;so much so that on the way home she announced a must-satisfy craving to me and Antoinne the driver. She absolutely had to have a brownie (normally she doesn't care for them). Antoinne suggested Starbucks, Deb agreed, so off we went!.Fortunately, it's only about a mile away. For only the second time since we have been in Little Rock these two trips, Deb went somewhere besides the hotel or hospital. Lately, Deb has had a morning burst of energy followed by a crash to lengthy nap.

In she pushed her walker, wearing her face mask, triple port dangling, and picked out her brownie and a fruit smoothie. We treated Antoinne to a Mocha which he genuinely appreciated.

So, back to the room for rest,then over for 4 pm again at the hospital. Having more Tilapia, green beans, rice for lunch.

Blessings all!

So much appreciate everyone's prayers, cards, gifts,calls, etc. Cody-thanks for the pharmacy measuring sheet. Used it this morning!

Vern

UGA 'Classmate'-from Vern & Deb

As you remember, I call our fellow patients/caregivers 'classmates'

Well,in the parking lot I saw a familiar sight. Georgia plates! Yes, and from Clarke County- ATHENS, GA ! I'm a Bulldog, class of '72, and Trey and Amanda are grads.

It didn't take long to track down the classmate, a PhD in immunology at the UGA Vet school. He's been coming here since last Sept. Originally he had gone to a local Oncologist who told his family he only had two months to live. Then he started researching Multiple Myeloma and found someone who had spent $250,000 at the Mayo Clinic only to be told by their staff they should have sent him to Arkansas.

So he came here! He say's this is the place and the research and results gotten here are the best in the world.

I had several extended conversations with my Jewish friend Israel from Brooklyn who told a similar story about NYU Hospital.

So, we are greatly encouraged after talking to the PhD about what's going on here in Arkansas.

And Deb says

'This has been a good day...nothing went haywire. I did have to have a bag of "juice" because of the fasting yesterday. But, other than that, it's been quiet and restful. I felt lifted by your prayers. Thank you for sharing your life events with us. I am still surprised at my low energy level. I was wiped out this morning for 3 hours following a trip in to the lab. But, a nap helped that so we could do it again at 4. We are having watermelon for supper.

PRAYER REQUEST: There is still a section of my middle back and right rib cage (front and back) that always hurt. This weekend is an experiment on timing and I am supposed to report back Monday to Dr. Nair's nurse. Pain registers as infection and my numbers have really gone up there. They did 4 cultures last night to eliminate possible common infections to be on the safe side. Vern brought home a portable infection infusion unit perchance my temperature reaches 101.

Saturday am-updated

'What do you do? Read?' the lady asked Deb. "No' Deb replied."Just hurt."

Pain yesterday was 8-9 on the 1-10 scale. This morning Deb reports about 3 and is ravenous. She's having bacon, English muffins, and a pear as we speak.She just asked for another muffin!

Thanks for your prayers!

PTL!

UPDATE: Just back from the Hospital. Deb left here this morning energetic and asking me to rent a car and take her for a drive. She just barely crept back in after morning chemo and is in bed asleep. She said to forget the drive.

I sorted the laundry and got the wash started and in a while will fix Deb's favorite Tilapia with rice and sweet potatoes. I hope she will eat some.She has lost a lot of weight as well as height.

By the way, in Israel Tilapia is called St Peter's fish and the first time I ever had it was at a restaurant on the Sea of Galilee. It could very well be the very kind of fish Jesus and the disciples caught/ate.

Our Jewish friend rode the bus back with us. His first name is Israel. I had to ask him because he never introduces himself. I asked him if he would have some fish with us and he declined. He is very reserved and wears black pants, white shirt, and a black hat over his Yamaka every day.

Yesterday, as one of the few able-bodied ones on the shuttle bus, I volunteered to make a Kroger run. He gave me a list along with others. He made a point of informing me that he always pays back gifts and money and never accepts favors. In fact, even in blizzards back in Brooklyn, he refuses rides to/from synagogue so he will not be beholden to anyone. He lives a very strict life but has no joy that I can see. Today, he got the chemo nurse that is a very loud redneck country gal(all the others are quietly professional) and she really gave him a workout. It was so funny to watch the polar opposites interact during his chemo treatments.

Deb's pain started back up around 10am. She is complaining of being very hot and very cold at the same time. What am I to do to help that?

Blessings all!
Vern

Several sunny spots in a dark day

Mid afternoon when Deb was in real agony resting in bed, the mail was delivered. There was a handful of very-appreciated cards and a box. The box contained the first photos of our Grand daughter Evelyn that we have (we've previously only seen her via web pix and Skype). In our crisis we have not have the opportunity to get prints.

When Deb opened that little album book and saw those pix,floods of joyful tears rolled down her face. I mean it! Floods of tears of JOY!

It was the best medicine she had today and helped her get thru the day.

Later, a box of pears was delivered.That was her supper tonight after a long fast.She is able to enjoy pears unlike so many other food items right now. Delicious!

So, to all the gift-angels and card-angels out there...it really does make an impact in our lives. If you've sent or done or prayed or whatever for us...THANKS!

We appreciate the encouragement and support soooooooo much!

Vern & Deb

How does the Head Doctor Chill?

Friday-finally over!

We got back to the room and had a little snack-light supper for Deb. Meds/Beds !

Vern

Test in progress

Deb has just started :45 mins in a pet scan tube.she has had a dirty
rotten stinking painful day! This has been an 8-9 on the pain scales
posted on the walls here.(10 is max endurable) It has hurt so bad she
would have fired me and i would have quit if we could have.

I told deb our situation is like a poor dog hit by a car and lying on
the road. A good samaritan stops to help and the poor dog bites at the
helper because it hurts and its all he can do!

Posted by iphone

Deb has also been fasting for the test. The eighteen meds i'm giving
her made her so sick in the empty tummy. And then there's the chemo!

Ad in that our first event was 13 hours ago.

Maybe tomorrow will be better!

Vern

Sent from my iPhone

Friday

We had an early am appt, an afternoon appt., and an evening procedure tonight. It's a busy day and Deb is absolutely as miserable and in as much pain as I can remember since labor and delivery.

I had a consult with a pharmacist to ensure I had a right understanding of the meds. This afternoon the nurse gave me a short training session on an emergency IV for the coming week as Deb's immune system is diminishing and she is so vulnerable to infections. She is wearing the mask out of our apt. and we are isolating ourselves as much as possible. The emergency kit includes a checklist, the on-call doctors number, and a bottle of meds that I would hook up to her port. Pray that it is not needed!

It's about 6 pm and we have to go back to the hospital in :30 minutes.

Tomorrow and Sunday we have 8 am and 4 pm appointments. We see Dr Nair again next Friday.One day rolls into another. If you ever saw the classic movie 'How the West was Won" think of the song 'Endless Prairie".

Here is a picture of Deb and today's driver Antoinne. You might remember we mentioned him in an earlier post.


A lady asked him his shoe size:18 he said.

One of the cool things here on campus is the IT capability. They mostly use a network of thin clients and servers keep each patient's data online from any building. The medical records are comprehensive and impressive.


The physical facilities are also impressive. A new cancer center is opening in August. The area we spend most of our time in will be moved to the new building.

Doctor's Report +++5/20/2010

Dr Nair reviewed labs reports and treatments and said Deb is responding very well to all. He said the goal for the next 2 weeks is to get thru it safely with no infections. He is concerned about falls/broken bones. He adjusted meds and gave us about a 3/4" thick stack of reports. This is definitely a data driven outfit!
We are getting a new PET scan tomorrow and morning and evening labs and meds.

I am so amazed at the incredible attention Dr. Nair gives to Deb and her case. He also asked how Amanda was doing. (Remember-she and Jon rebuilt homes in India in his home village)

Afterwards his nurse had a time of prayer with us.

While this is incredibly good news, Deb is in constant pain and cannot get into a position sitting,standing, or lying down that she can endure pain free. Pray that she will get meds adjusted and be able to sleep.

Vern

Thursday mid morning-Who is that masked woman?

Deb's white blood count is now below 2.o and her immune system is on it's way down close to zero. She has to be super careful about infection. We had to get another type mask that is tighter fitting and rated for little bugs. We had labs, growth hormone shots, other meds this am, meet with Dr. Nair at 1pm, then more shots at 4 pm.

We had a full waiting room of classmates this morning while the staff was having their staff meeting. Lots of chit-chat and how goes it. Our Jewish brother was settled in reading his Old Testament in Hebrew as many Christians were reading their Bibles. Faith is a common topic among those facing their mortality. Why do we wait until then? God desires our fellowship throughout our lives.




The last picture is of the embroidery lady ministering to Deb yesterday.

Examples of Plaques from last post

Debt of gratitude owed to previous generations

Walking around the various buildings and clincs here in Arkansas Deb and I have seen many plaques on the walls honoring the previous generations who made the plans and raised the dollars to build these fine facilities. It reminded me of how much we owe to those whose sacrifices make our lives better today. It also reminded me that the responsibility for making lives better for the next generation is ours. Every nice building,job,church,school for our kids and grandkids is our responsilibity to provide so it will be there for them.Then,perhaps they will hang plaques in our honor.

The one saying I really dislike is 'we are spending our children inheritance'. That is really a short-sighted goal.

Thanks to those who met the responsibilities of the past so we benefit today!

Trey's hobby

Trey,our oldest son,lives in Europe and has been taking aircraft ground school and flying lessons for several months as a hobby. He's been tied up lately becoming a father.

Today he called and was very excited to say he'd received his Belgium Student Pilot permit. Congrats son! Proud of you!

Dad

Weds Evening Ramblings

Deb just went to bed. Her back is doing better so we shifted her from a 12" wedge pillow to an 8" wedge pillow. She did the previous post with no editing from me! Her previous posts all needed touch-ups. Didn't she do great?

If you've led a healthy lifestyle and never seen the inside of a medical supply store, drop into one someday to see what many people have to have to exist.It will make you appreciate your health.

Change: Deb just called from the bedroom and said please bring the 12" wedge back: transition was too soon. Change: our new lifestyle!

Everyday we're surrounded by folks with all sorts of troubles. Then we see the medical staff caring for their needs. There are lots of nurses of various 'ranks'; boss nurses have a lot of authority. The Doctors come and go but aren't among the folks here often. I've come to appreciate the math and chemistry that Doctors and nurses have to contend with.

Another change: Deb called 4 more separate times to help her get settled in for the night. Her rib pain is really bugging her.

I was president of our High School Science club back last century and started out at UGA as a Chemistry major, and l feel really dumb! These folks are so sharp! Today I would have flunked out. I picked up a bottle of liquid meds from the hospital pharmacy. As I reviewed the label it did not say take a dab,pinch, or scoop like grandma's recipes said, or a tablespoon or so as an over the counter drug; instead it instructed me to give Deb precisely 30 ml on a set schedule. Temporary panic: how much is that? Fortunately I found a sympathetic pharmacist who had a small marked cup for us. I wisely did not divulge my forgotten science background.

Lots of new things going on around us. When Deb's stem cells are ready for harvest, they will remove the existing 3 port Cook port cut into her neck and replace it with much stiffer larger model. The reason? The machine that filters stem cells out of the marrow has a very strong suction and would collapse the current port. But it is too stiff to live with on a daily basis.

A classmate from Birmingham was a few chairs over from us today and in a talkative mood. I commented to him that we each had significant medical resources in our home areas and he said, 'let me tell you why I'm here!' His wife tried to hush him but he said what he had to say was true and he would say it. His story was that when diagnosed he was going to get hometown treatment but ran into a friend who also had myeloma and had been treated at the local hospital. His friend said that there were eight myeloma patients there and after two months of treatment only two were still alive. When he heard that he decided he was coming to Arkansas.

I do a little flight instructing and a while back was teaching the CEO of our local award-winning hospital to fly. One day he mentioned that his most common question asked him is 'if you found out you had cancer, where would you go?' and he said his answer was 'to the airport!' "Why?'Because I'd catch a flight out to MD Anderson!"
{That's a famous cancer hospital in Houston}

So, that brings up an interesting question: if a person comes down with a serious disease, do you stay with local,convenient, known medical facilities and doctors, or do you seek the best place you can find? Many factors weigh in on this and I recommend you ponder the question because many of you dear readers may have to answer the question for yourselves or loved ones. My eyes have been opened to how much cancer is around us, in addition to other serious diseases. If you face a serious disease, seek much information and counsel! Deb stated today that everyone has a terminal disease and it's just a matter of how and when we are departing this life.

Getting off the hotel transport tonight, a fellow caregiver was next to me. She is a teacher from Oregon assisting another teacher. She had an interesting necklace and I commented on it. It had a silver figure on either side of a cross. She said one represented her daughter that she still has, and one represented her hero son who was killed in Iraq.

I got to help my Brooklyn Jewish friend today over at the hospital. He has no caregiver and really needs one. He was so lost in the facility! He has no cell phone and I had to call him transport and get him to the pickup spot. Another classmate said he found him wandering lost in another building a few days ago.

Can you tell that relationships are on my mind? We are all in this together!

Be sure to check at earlier posts as I edit and add pix as I find time. I want you to share this experience with us. A wise person once said that it is essential to our souls that there are witnesses to our lives who will know we were once here.

Good night all!

Vern

From Deb-Weds evening

Hi, everyone!

Thank you so much for your love and encouragement. I realized that there has been something special in the mail every day we have been here. That realization was emotionally overwhelming for me. Thank you for the cards, emails, gifts,prayers and love.

We have entered a new phase of treatment getting ready for the stem cell collection. I will go to the lab at 8 am and 4 pm daily for growth shots to stimulate the growth of the stem cells. This is also when they will be watching my white blood count very closely. Seems the crucial numbers are 2, then 0, then going back up past 2 again. Until then you just try to stay as clean as possible and avoid a lot of places,etc. Apparently the usual length of time for the process is 2 weeks. I talked with a lady today who is going to start her collection tomorrow and that was the length of time it took her. My white blood count yesterday was 2.18. I don't know whether that's good or bad really since the body will do what it's going to do in its own time and I just wait.

Today's nurse said that pain in the bones as the stems cells are forced into the bloodstream is the main side effect. She did say that it didn't affect everyone the same way. Please pray that additional pain will be minimal because my bones, particularly my ribs and back, are hurting quite a bit anyway.

This has been an emotional day for me. I miss home, family, friends, etc. Yet I am so grateful to the Lord for carrying us everyday. I know He will continue to supply our needs. Big example: I didn't take one of the main cancer meds that I was supposed to take yesterday. Vern had run an errand and I was looking away from the nurse who was doing the blood draws,etc. A man had tracked me down to do a survey and I was totally distracted. I don't know where the error occurred, I just know God had them find it and give it to me today. The doctor said the deviation will not be a problem. I just rejoice that the Father is overseeing my treatment.

I so appreciate the messages and emails. I wish I were responding to everyone so you would know how special they are to me. I read them on my cellphone as I am waiting for appointments. Often I cry with gratitude that you include me in your life. In fact, there has been a lot of grateful crying just being so aware of being loved and carried by the Lord through wonderful brothers and sisters. It is an overwhelming feeling. God is so good and you are being loving hearts showering me with love and prayers.

Much love,
Deb

Hospital ministry angel

Today in the waiting room a lady had an embroidery sewing machine set up in the public area.She was doing embroidery for patients and caregivers. She volunteered to put my name on my RV plane hat, so I let her. She did a beautiful job, Deb and another lady had been conversing and Deb is having an emotional day. The embroidery lady-Sammie Palmer-came over and ministered to Deb. She said she knew what hard things in life was about,having lost a 3 year old daughter and later surviving cancer herself and losing her sister to cancer.She put her gentle hand on Deb's shoulder and comforted her. She really served as an angel today- which means one sent from God.

Right now Deb is having her labs taken, which means a tray full of blood sample vials.She just got her chemo bag removed.Yippee!


All our classmates are in animated conversation. I shared pictures with all from the Calla collection from Ginger Lou.Thanks for encouraging these folks.

Vern

Wed Lunch

Morning all! We got up before breakfast this morning and were in a clinic when the staff got there. No clots in arms or legs! PTL!

Then we called for a ride, returned to the room, got a call from Deb's School HR (she's a High School Math Teacher),then took a combat nap. Up now, nice lunch just now, then hit the chemo clinic for possible the end of this round in an hour.

While we were eating we got a nice call from the Chicago back doctor's staff where Deb had been. I told her that many of the patients here in Little Rock report that their presenting symptom was lower back pain, or sometimes rib pain.Blood work showing high protein levels was typically the defining test. Even folks from rural areas have reported that their rural Docs diagnosed the Myeloma based on never having seen a case, but noting the protein levels. Myeloma is < 1% of cancers I read.

Then tears of joy/sadness as Amanda called and told Deb about a baby shower she was being given with Deb stuck in Little Rock and unable to attend. Something mother-daughters normally get to do. Deb is overjoyed for Amanda, but sad because she won't be there. {I had to spell it out for the guys reading this}

Door knock as we were finishing lunch-it was mail from you! Thanks!

Got to run-Deb is feeling better, Vern is either tired or fighting a little bug.

Later!

Vern

Tuesday evening

Deb had a special sonogram of her legs before chemo change this afternoon. They are looking for possible reasons for her feet to swell (I've always thought her feet were swell!) and they were looking for clots starting in the legs. At 8 am in the morning they will do the arms. Since we still had time available when the legs were done we asked the technician to do the arms today and be done with us. She replied that she could not because the insurance would not pay unless it was a separate appointment.

When we got home and got Deb settled in, I started the laundry. My elderly Jewish bud saw me and got me to help him with his. He needs a helper. He started his treatments when Deb did but is alone. He has four grown children. He was expressing frustration for having helped his kids with 1.5 million in houses, taxes,etc (behind the scenes invisible help) but the kid's in-laws have spent a few thousand (highly visible) helps like summer camps, toys, and they are the favorite grandparents. The we talked about Auschwitz, Hitler, the nature of war. Then he mis-quoted Solomon and we discussed that. Then we talked ten dollars he thinks the maid stole which he does not begrudge her since she is poor, but hates thieves who steal luxury items.

Deb enjoyed her mail and really lights up when it arrives.

Blessings all!

Vern

Your Posts not showing up

We don't want to miss a thing. We've had several folks tell us they
posted comments and they did not show up. If that happens to you,
please send an email to me so I can investigate.<vern 'at'
mindspring.com> replace at with @
Thanks
Vern

Visuals for today

Deb checking your emails



Deb boarding the hotel shuttle





The UAMS campus



Artwork in a waiting room

Tuesday morn

Sorry about the lack of an update last night. I was bushed!

The short note about the blood-clot tests is about Deb's left foot swelling up so she had to wear sandels because none of her shoes could go on her jumbo left foot. Today and early in the morning we do that test.

Right now we are listening to quiet worship music and having b'fast. I just gave Deb the morning pills, and her normal pills, and the 'heavy' pain pill.The chemo pumps are doing their thing. Oh, and to add to the caddy's load-the big red urine sample bottle and toilet seat 'hat'.

Deb was commenting on how blessed she is because in spite of the heavy chemo 24/7, she hasn't had the worst kinds of chemo reactions. She is mostly very tired, 'chemo-brained'(think not bright, even funny), and hallucinations.She just had a visit from Amanda here in the room. As far as I know,Amanda is at home in Atlanta.

Look out everyone! You may be our guest at any time courtesy of the drugs!

When we finally got back to the room last night, I got Deb supper and settled into her chair and then I grabbed the hotel van to Kroger for some grub.I shared the ride with another of our 'Classmates.'(that's what Deb and I call fellow patients/caregivers)

Yoopa Pranish (u-par) is Thai. She is eighty and has Myeloma. Her husband (86) and granddaughter (32 but looks 15)are here with her. Yoopa seems to be the caregiver for the other two. Yoopa was in a talkative mood and we did Kroger together. She is so tiny-80 pounds!Her British style English is perfect.

She and her husband left Thailand 40 years ago to move to Washington where he worked at the World Bank. Now they live in Palm Beach,Fl. but regularly visit home(Thailand) to visit her mother (102) and aunt(106).
Yoopa is an avid golfer and said before the cancer she played at least 18 holes a day.

Many of our classmates are on walkers and wheelchairs; many are wearing face masks and dragging bags of meds,etc around with them. The hospital complex has teams of transporters at every building. If you dial their number, a young guy/gal with blue shirt will suddenly appear with a jumbo-sized wheel chair and navigate you to the desired next stop. Most stops also have blanket warmers and snacks available for the patients/caregivers. First class!

A number of you have asked about flying out to visit. Right now is just not a good time to visit since Deb is either in treatment or subject to a no-notice schedule change and is napping or groggy most of the other times. We do not go out to eat. We are not good company and while we appreciate the requests for visits, it would be better for us to have phone calls,mail, or emails at this point. Maybe later on the visits.

Deb just said, "I appreciate your prayers; I need them; I feel them."

Soon we complete this round of chemo, and then the hard times hit, Please continue praying.

Vern

Mid afternoon

Due to swelling and fluid retention, we have a Tuesday and Weds test for possible blood clots.

Monday morning

Great nights sleep until 3:45 am when some meds kicked in and that was the end of last night! Deb said 'these are my good days before the chemo wipes me out?'

She's a pitiful pup right now. She can barely swallow. Because of the port cut into her jugular,she cannot shower or wash her hair. I wrap her upper body in Press 'n Seal and squeeze a wash clothe out hard,then give her careful spit baths. Ever washed someone's thick hair with a squeezed-out wash rag? (works great on my pate though)

She's dragging a bag around (actually-I have to carry it) that contains the portable chemo pumps, and clothing choices are slim because whatever she wears must fit over the tubes and make medical care,potty breaks, etc as convenient as possible.In order to save her kidneys,she has to drink constantly.Her speech is slurred by meds and she hallucinates and talks to invisible beings. Did I mention that she's beautiful and I love her so?

In spite of all that, Deb is so loving and concerned about others. In just about every waiting room, she sits next to another pitiful suffering lady and strikes up an encouraging new friendship. She's leaves them built up and their day brighter.

Because of the swallowing issue, Deb is beginning to go on soft foods for a while. Picture mashed 'taters, jello, applesauce, and other such delicacies. Yum, yum!

We are so blessed by our circumstances and by each of you. Many of you responded to my appeal for current news from YOUR life. Thanks! Keep 'em coming. See email addresses on the right side under CONTACTS.

Blessings on your day

Vern

Too funny to pass up

Evelyn Sky Darley, III

That's what Trey said the Europeans insisted be the name on newborn Evelyn's birth certificate. Trey said it took the most impassioned French he could muster to convince the bureaucrats that just because he was the third {hence his name 'Trey'} and it followed his sur nane, it was incorrect to force that moniker onto little Evelyn.

Fortunately, he prevailed and Evelyn is still an original!

Vernon O. Darley,II and proud of it!

Sunday morning

Last night Deb and I had the best nights sleep in months! Truly sweet!

With all the meds she took, she would not wake up for the 2 am meds,so I let her continue sleeping and I went back to sleep.I got up about 7:30 and Deb slept until I awakened her at 9 am. I fixed her hash browns,bacon, and English muffins but she could eat very little because her 'swallower' is broken. Mashed banana ended up as the main course. Can you say 'ummm good?

During our 35+ years of marriage, church has been the core activity of our Sundays, but for a number of months, we've been unable to attend or participate. Starting last fall, Deb was so exhausted that rest was more central to Sundays. So,as so often done, we have our own devotions and prayer time while the rest of you who choose have your corporate body worship. This morning we were in the Psalms together, 70-76.

Everyone is so kind and thoughtful, but I do have one complaint: we want to hear about your lives, what's going on in your families, the workplace, small groups, the hangar, your hobbies,struggles, etc. Now we understand that you may not want to post such here for everyone to view, so our private email addresses are found in the right hand column under CONTACT INFO.

Please deluge us with the realities of YOUR lives!

That will help our relationships as right now we are mostly the only ones letting all facets of life be exposed thru this tell-all blog. Perhaps you think we aren't interested because we have so many concerns right now ourselves. However, that is not true! Regular emails are so welcomed because we want to stay connected to life, not shielded from it.

BLessings!

Vern

Vern: pharmacist, bookkeeper,caddy, or all three?

So here's Vern; doling out a lot of meds, as many as ten of one, on rather rigid schedules, and varying day to day.

We have little zip lock baggies for morning meds, lunch, supper, bedtime, 2am regular meds, and the 6 am meds. Then there are the as-needed meds. We have a pill cutter when a whole pill is not needed. We have spreadsheets, notepads, doctors orders, color-coding,patient itineraries that are modified thru out the day. We have appointments.

Squeeze in normal living including food, laundry, drug store,grocery store, transportation, sleep, cooking, clean up,changing bandages, bills, rest.

Add to all these: we are now 24/7 hooked up to this dual portable infusion pump. It is connected to two of the three lines surgically implanted into Deb's upper neck area. The connectors must be kept dry and very clean as infection is a terrible enemy. Deb must bear the lines and pain and awkwardness of wearing a medusa-like dangle of tangled lines and I must remain within a step of her and her walker as we travel around campus and the apartment.Deb is limited to several pounds. It seems to weigh about 10-15 pounds and has two pump systems, two containers of chemo, and a chemical spill and cleanup kit within.So,Vern the caddy is here.

Then tonight we added the drug thalomid. Yes, the drug that caused so many birth defects in the 1950's. As the paperwork says, scientists do not understand why it helps Multiple Myloma patients: it just does. Man, are we grateful for it and the other brews!

This particular drug has contracts and a raft of paperwork in order to obtain it.

So, that's what life in Little Rock is like. With daily labs, Deb's immune system is being killed off. At a certain point in her chemistry, the access port will be changed to an even bigger port and she will spend two days have her blood cycled thru a machine that will separate out her stem cells to be frozen and later put back into her body to restore her marrow. Then home for a season, then back to repeat the cycle.

Deb had a pleasant choice today: which side of her tummy did she want a new shot in?

One of my challenges is responding to Deb's hallucinations. Just a few minutes ago, she called out to me from the bed wanting to know why Amanda was here. She sees things that aren't. She hears things that aren't. Some are gut-busting funny; but, I can't laugh. I must swallow hard and give a kind response. Sorta challenging! She is obsessing over her port. She is convinced it is not right. We've repeatedly had it checked by medical personnel. She is also fearful that I will be giving her medical treatment thru the port.I may have to while we are home, depending on how the chemo goes.I understand that fear because I have it also.Messing with tubes that are attached almost into her heart is scary.

In spite of the rigidity of life as it is right now, I am very grateful for the opportunity to be here with Deb. I appreciate the insurance.I appreciate the time we live in and the technology we have. The housing and transportation are as convenient as could be. The fellowship with other patients and care givers is unique.The medical staff is outstanding! The support from our followers, the cards, packages, phone calls, all mean so much.

Thanks to each of you!

Vern

Yes! Made it through Saturday!

Vern and I are linked together in an all new way. I am now hooked up to a take-home chemo suitcase. The pumps and meds weigh more than my back weight limit so I cannot get too far from Vern since he has the medicines I need and has to carry this baggage.

We will be returning daily for check-up for specific things. The labwork today revealed the possibility of an infection and they want to check deep vein thrombsis. But the committee of doctors agreed we should continue.

First thing this morning I did another Geno array which is taken from my pelvic bone. If was easier than the first one and I think this may be the last of this round. If so, good news!!

Deb

Saturday am - Big Day

Good morning, dear ones,

Today the big guns start. I have a bone marrow at 9:15 and then go to the infusion center to get connected to the bag of meds that I will be taking 24 hours a day until Wednesday.I have already been having drug reactions - severe muscle spasms, hallucinations, tremors and slurred speech. The pain medication change has been a little more difficult than expected.

I have been told by patients and nurses that the hardest time will be after the bag is finished. The body has begun to adapt to drugs and they are gone cold-turkey. I don't know what that means in practical terms but it is necessary part of the process getting to the stem cell collection. More details on that later.

I know you are praying and am so grateful to know I can ask you to target these things. I am praying that what the drugs given me goes through the body of Christ into me and kill the cancer cells but bring life to Debbie Darley.

I slept in bed last night using a 12-inch thick foam wedge. A nurse suggested I reverse the order of the muscle relaxers to night and it worked. I am still able eating better than I anticipated. So, please pray as the Lord leads you but included please pray for me to be able to eat so I can take all the pills I have to take at home and not getting nausea so I can keep them down.

We have to get ready to go but I want to share with you that this morning I stood in the middle of the floor and declared that I belong to the Father...I am gratefully his child and I know that He hold me and protects me. He plans for me are for good and not for evil to give me a future and a hope.

Must go get "de-stinky". Love to one and all.
deb

Friday evening contest

Why can't we have a little fun here to dilute the somber nature of our blog? See contest below.

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Saturday starts a very intense 4 days. We get another painful sample of hip bone and marrow first thing in the morning.Reminds me of the 'get a pound of flesh' sayings. The we get a portable chemo machine plumbed in that we carry. Then strong meds.

That's all on top of Deb 'feeling like a dog' already. She really began dragging this afternoon. We got the van driver to take us to his favorite little steak house for only our third visit to a restaurant in Little Rock in all these weeks. I wanted to get Deb some red meat to get her blood up. She was marginal in tests earlier. She managed to eat about 3 oz. of steak and that was about all she could do. I brought her home and got her down for a nap. She is so tired and it's only going to get worse.

This morning we had a little fun and picked out a hat to get her thru the coming days of hair loss and being unable to shower or wash her hair. She chose a sparkly bold bright orange hat that matches nothing.

So, let's have a 'name the hat' and 'name the angel pin' contest. Please submit any entries below. If there is a reason for your suggestion write down also. When Deb is up to it, she can chose a winner. Everyone please submit your entry below.