Thursday - More Infusers and the Resulting Day

 Here's how Deb looked and felt as the day began. Not much pizazz there!

 Here's some of the meds to help her get thru the day
About that many for tonight, like last night.

 Good meds plus expert advice from our APN gets results!

 Deb's appetite came roaring back today. She wanted her favorite meal from her favorite restaurant.
Nothing for old Vern to do but take a field trip and retrieve said favorites from Loca Luna.

Alyssa,  the hostess from Loca Luna sent Deb a dessert. Thanks!

 Alyssa sends an encouraging thumbs-up greeting to Deb.

Weds -Fever ! Infections!

Deb consults with the APN about the infections and treatments needed. She had fevers last night even while taking strong antibiotics via infusers.

The APN's decided that the risk of a life-threatening infection was great enough that they gave her new strong antibiotics all day and sent home infusers for me to change out at 4:30 pm, 9 pm, midnight, and 4 am. Hopefully, they will do the job and tomorrow will be better.

A classmate who has had excellent results with Carfilzomib which Deb is no longer taking told me today that he has been asked by the drug company to go to a FDA meeting in Washington, DC in  June for the approval hearings. Hopefully this new drug will become available to folks around the world.

The thesis behind all the treatments for cancer here is that all people are different and react to meds differently. Genetics are used to determine what drugs help each individual and all helpful drugs are combined in a very aggressive drug protocol. No peashooters: just cannons!

MRI Report-Tuesday

The APN gave us the initial MRI report today. It seems to indicate the lesions are smaller which matches our own uneducated observation. We do not know what it means in terms of future treatments or what will be on our schedule after Thursday. We will get that information once we see Dr van Rhee again.

I put medical definitions in italics and brackets within the report.

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MRI of the Sternum

1-Hypointense {having a lower intensity than some other object.}Homogeneous {Uniform in structure or composition throughout, as of a chemical mixture.} Bone Marrow on Stir Weighted Studies

2-Stable 7 cm focal lesion involving the inferior {Inferior: In anatomy, below or toward the feet} body of the sternum. The anterior {In human anatomy, denoting the front surface} soft tissue mass identified along the inferior body {Inferior: In anatomy, below or toward the feet} of the stream show internal improvement from 5 to 4 cm. The bilateral {Affecting both sides.} internal mammary nodes likewise shows interval diminution in size.

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Deb is in bed wrapped in blankets. She is burning up inside due to the meds and freezing on the outside. For supper I whizzed an organic apple in a blender and she drank it. Nothing else appeals to her even though  I had prepared good veggies her favorite ways.

I just hooked up an infuser with meds to help her. She has been taking 'fizzies' that are helping her PO4 levels.

Deb's white blood count was .06 today which is getting very close to no infection fighting ability.

Memorial Day-Nurse with Green Beret Son

IV's all Hung from their Tree with Care in hopes that Dear Debs would soon be there!

Donna Assists Deb

This morning Deb was assigned to nurse Donna. After our initial in-processing of vitals, we went back to her cluster of four chairs. She had already acquired the first IV's for Deb and had them hung and ready to go which greatly speeds up our day.  We would have been out very early except Deb needed a unit of blood which took a long time due to the matching required.

Deb was the last patient Donna was seeing before a three month sabbatical. Her son is a Green Beret who served in Iraq and Afghanistan. He is now back and she is going to spend the time helping him with some issues.

Borrowed pix of a Bichon-not Donna's

Donna is also a new puppy grandmother. She has a Bichon female dog who went into heat. She put her in a bedroom with a child's safety gate to keep her in. Meanwhile, a male Jack Russel down the street detected her Bichon, dug under her 8' fence, found the dogie door on the back door, came in the house,  jumped  over the child's safety gate, and mated with her Bichon. The resulting litter is so cute that all are taken by other nurses on the staff here. Can you see why?

Deb wanted a milk shake for lunch to cool her throat, so that's what she got!

Hope you had a wonderful family time today!

The next four days for us are 7:30am show times at the chemo clinic. It is our opinion that the lesions are smaller, but we await hearing that news from the doc with eagerness! If true, you may hear our shouts of joy even from this great distance!

Hard Sunday following a Hard Saturday

This is nurse's list of IV's Deb had today. She got into the hospital bed about 8 am and got out about 4:45 this afternoon. Last night she was on the iv bag and had infusers. Tonight she has more infusers which we will be changing as the night wears on.

Last night she had a fever and the nurses took it very seriously today. Deb has multiple antibiotics.

Before we  went to the hospital we dropped Amanda off at the airport. It was so good for her to be here. Thanks Jon!

The APN said Deb should have about 4-5 more really bad days before she begins to recovery. Can't wait!

Tomorrow is 7:30-?

Hope you have a great holiday and a big thanks to all Vets!

Finally, my father is 87 years young today! Happy Birthday Dad!

A Hard Saturday !

Deb had a very hard day. We were in clinic starting at 7:30 am until after 4 pm. She had continuous infusions of various drugs all day. She was sent home with another 24/7 bag of fluids and an infuser.  She went to bed early tonight but has been up and down with an upset tummy. She also has a mild fever and is freezing cold. I put two extra blankets on her and she is still cold.

Amanda spent the day with Deb and was tremendously encouraging. She leaves for home in the morning. We will miss her.

Deb is scheduled to start treatment again at 7:30 am for the next week. Even though Deb had MRI's of her lesions yesterday, no report was available today. Guess that's the benefit of a holiday weekend.

The hard chemo is having its terrible full impact on Deb and she is miserable. Please pray for her!

Friday-Fever and Amanda

Deb needed careful assistance today as she was woozy (a medical term). Amanda flew in to check on Mom and is our first overnight guest in Arkansas.

Deb loves unusual stuffed animals. Amanda brought her a cute ostrich named Orla.

Deb had a slight fever today. Her throat is in bad shape according to Nadine. Deb is taking 'Magic Mouthwash' to treat the thrush. In order to help Deb prevent pneumonia, many of her meds will be given via an IV starting tomorrow. They drew a lot of blood today testing twice for bugs that could really hurt her while she is in weakened health.

Today Deb also had special MRIs that maybe our first indicator about how effective the chemo is being at reducing the size of the lesions.

Tomorrow starts with labs at 7:30 am. Here at UAMS there are no holidays. Treatment goes on. So, everyone have a good holiday for us!

'Puny Is as Puny Does'

Deb just described her feelings to son Trey in Belgium via phone using those words.

Deb now has thrush in the mouth and throat. She sounds raspy-voiced. She had various meds and infusers today in the chemo clinic and was sent home with an infuser hooked to her central line. It resembles a small baby bottle with a rubber bladder inflated inside it. The bladder pressurizes the liquid to be dispensed into the body. It is calibrated to maintain a specified flow over a specified time. In other words, medical magic!

Today our APN Nadine (Advanced Practice Nurse) was making rounds with a new APN to show her the ropes. Welcome aboard Diane!

They are very concerned with keeping Deb far far away from that pesky old pneumonia!

After clinic, Deb stretched out on the couch and enjoyed her Western Castle-still un-named!

Tonight Deb had a change of supper -organic slurpy from her Blentec. 

Tomorrow at 7:30 am she has more chemo clinic time and then tomorrow afternoon and tomorrow night she has MRIs. At 10 am Amanda is flying in.

Busy day ahead!

Chemo Strikes Hard!

Blood Transfusion

Sleeping-the state of the week

Hugging the nurses today-Deb is able to smile even when in pain

Tonight we closed the clinic again. Deb had some low numbers in the lab reports so she had a buffet of transfusions and pills to help her get those numbers up. She needs assistance when she walks. She sleeps most of the time. The infusion pump was taken off  and then she had to get another because she needed overnight fluids. We were given some emergency infusers in case Deb gets a high fever tonight. Pray we won't need it!

We show at 7:45 am and Deb will have to wear a mask because she is now neutrapenic and very vulnerable to germs..any germ! She only wants cottage cheese and Cherios in spite of wonderful alternatives.

Today we shared the cluster with an architect who is also a myeloma patient. He is on the advisory board here for the myeloma clinic and was asked to help design the new offices for the doctors, nurses, and staff that now resides in the Spine Center 4th and fifth floor. They will be moving to the eighth floor of the Rockefeller Building above the chemo clinic which is on the fourth floor.

The architect-Bob Kohler- lives in Fayetteville, AR (not Georgia!) Bob is one of the first testers of Carfilzomib. He has been doing very good on it.

Bob Kohler and nurse

Waiting area with doctor's exam rooms in the slanted rooms

 Bob described the philosophy of the combination of bold architecture with bold healthcare. The term Archi-therapy. Thoughts are that a stimulating environment helps a patient in dealing with a serious disease. Interesting thoughts. What do you think?

Can't wait to see it when it opens in August 2012

Wonderful Email

Vern,

I am the piano player you spoke with this afternoon at the cancer
institute.  I enjoyed our short visit and appreciated your very kind
words.  You mentioned your wife and the blog you have ­ I just read
through it and want you to know your wife will certainly be in my
prayers.  We never know how our experiences in life will connect us with
others ­ you and your wife are very special people and I know you are
helping many others by the way you are dealing with your situation.

I noticed Dr. Emanuel mentions your blog and your wife's journey in his
"welcome message" on the Institute webpage.  He is a great doctor.  UAMS
is a wonderful place  full of medical professionals who truly care about
their patients..  I can only imagine how difficult it must be living in
one state and coming here for treatment, but no doubt ­ you are where
you are supposed to be.

It was a pleasure meeting you this afternoon and please tell your wife
I'm glad she enjoyed the piano music from her treatment room.  Perhaps I
can meet her one day soon.

My best to both of you.

Sincerely,

Laura

Dr. Laura Bednar
Assistant Commissioner
Arkansas Department of Education
501-683-4800

Angels-Various Specialties Serving

Today I ran downstairs towards the Pharmacy to get some meds Deb needed. Since I'm a great admirer of the piano music coming from the big Steinway in the first floor foyer, and a very talented musician was delighting many of us with her music, I stopped by to enjoy a few minutes. I introduced myself to the pianist, Laura Bednar. I asked if I could record a little for the blog. So, here is Piano Angel Laura. All I have to record with is my iPhone, so imagine how good it sounds in person.

Deb's chemo is really beginning to have an impact on her. Today I cooked fresh green beans and potatoes. She barely ate them. For supper she only wanted a milkshake {think-cool!} Not long after she finished the milk shake she went to bed.

Click on Pix to enlarge

Today Deb shared the cluster with our Turkish friend again. {Sorry-we simply cannot understand his name pronunciation}

The Rockefeller Center is named for former governor Rockefeller. I showed you his family Bible verse earlier. There is a wall mounted video display that describes the huge influence he had on Arkansas. It is fitting that this wonderful facility is named in his honor.

Here are some pix of the downstairs area after most folks had gone home today.

The Patient Center-a quiet area with computers, books, and magazines

The snack bar

The piano in the foyer

Looking toward the MRI clinic

Quotes that patients wrote on the final steel beam used in erecting the 12 story Rockefeller Center

UAMS has many opportunities to honor donors

A Hard Monday-Labs and Pix Deb Shot

Click on pix to enlarge

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

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

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

One of the belly shots all ready to be savored

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

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

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

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

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

The major subtitles of the labs are:

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

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

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

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

Doing some business

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

CONTACTING DEB & VERN

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

Sunday Happenings-Turkish friends

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

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

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

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

'Judge' Steve and 'Capt' Dave

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

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

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

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

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

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

Vern had spaghetti.

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

Mr Sam

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

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

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

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

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

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

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

Blessings All!

Saturday-Started Chemo -met the 'Red Devil"

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

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

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

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

Nadine

 

 

MEDS:

Here's the basics for those interested:

Chemo
Thalidomide
Dexamethasone
Velcade
Cisplatinum
Cyclophosphamide
Etoposide
Doxoruicin
Neuprogen
Lovenex

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

Friday Activities + Introducing Dr van Rhee

CLICK ON PIX ONCE TO ENLARGE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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