Tuesday-a down day, except for Mail!

Before we left for the clinic this morning, I checked the mail. The box was full! Deb was thrilled! Thanks, mail angels! This is exceedingly rare! Normally its a few per week.

Yesterday was an up-day. This morning Deb's 'woozy meter' was creeping up towards 'needs help.' In fact, I had trouble waking her.

A few words of explanation please: In Atlanta we have a weather man whose name is Mellish, He includes in his forecasts what kind of day to expect on the 'Mellish-meter.' One day a group of us homebuilt airplane builders were talking about our planes, equipment, and an upcoming flight. An Atlanta area pilot mentioned that it looked like a nine on the Mellish-meter. A non-Atlanta pilot became very interested and said he would like a Mellish-meter in his airplane and asked what it did. We roared!

Moving forward, Deb and I communicate her mobility and alertness in funny ways. We talk about her 'Woozy-meter' to describe her stability.  We also use the third person to describe how she's doing. I say 'what's she want for supper?' Deb reply's 'She's not hungry,' etc.

Weird, huh? More of our secrets!

We visited with young classmates from upstate NY this morning. We used to do labs together at the Markham House. He is a teacher in High School and is sweating out getting back in time for the new year.

Morning

This morning Deb's labs indicated she needed platelets, infusers, etc. What seemed like a short day  turned into TWO trips to the chemo clinic. There is a shortage of platelets and Deb's are matched. So, I brought her home, fed her lunch, and waited until the Red Cross could locate platelets. She got in a nap. I got in a load of laundry. Finally about 2:30 they found some. So, back we went. Pre-meds are required and all that takes a while.

When we parked the second time we bumped into one of Deb's favorite nurses from the past two years who had been out on baby leave. We enjoyed meeting her children. Look at that head of hair!

When we went back we sat across from a couple from Perry, Ga.-Connie and George Potter. They are friends and neighbors of a Peach grower I used to do business with, Chop Evans. They have been coming here since 2001.

Afternoon

So, Rate Deb's Woozy-meter reading on the two pixs above-morning vs afternoon. See how good you are. Answer: call me!

Monday-111 degrees in Little Rock

18 degrees above normal!

Deb presents the ten tubes about to be filled with her blood for just one of the tests she had today.

On the way in to the clinic Deb got a hankering for some Chic-fil-a lemonade which she sipped on for several hours. The meds make most liquids have a metallic flavor.

Peggy is our APN this session. She gave us good news about Deb's progress in recovery . She is doing well. Peggy is about ready to get Deb re-staged which means Deb will have the big battery of PETS, MRIs,etc to determine the impact of this round of chemo. We are excited because that means that we MAY get to come home sooner than expected.

We had a call from our insurance nurse coordinator. Several things were cleared up. If Deb so chooses, the insurance has approved her participation in the Killer Cell test protocol. The other question that was big on my heart was 'how close to lifetime benefits was Deb?' The answer??

Under the new laws, there is no longer a lifetime benefit maximum. That sure made us happy to hear!

On the home front, our refrigerator quit on us so we had to toss some food. After several hours Vern got it working again and also installed a water filter on the ice maker to rid us of the very high chlorine taste in Little Rock water.

All in a day's work!

Blessings!

Saturday: just like all the other days!

All day long in the chair!

Deb started about 9 am in the chemo clinic. We thought we'd be in and out today: as usual, we were wrong!

Naomi was our nurse today.

While in the waiting room we met new classmates from Oklahoma City{bottom pix}  (now Fort Smith Arkansas) and {top pix}Mississippi. We enjoyed trading stories about our myeloma adventures.

When Deb's labs came back, she had some needs.

White blood cells=0.05, normal is 3-12
Platelets-critically low=14, normal 150-500
plus other minor needs

So, an infuser was started, and an order for matched platelets was called in. That takes awhile. In fact, it took until about 5 pm! We thought for a while she might have to spend the night in hospital  if they could not find these special platelets.

The matched platelets

We are forecast to be 107 actual degrees on Monday. Today it was 104 but felt 109. I'm installing a ceiling fan in our small condo LR to help us cope.

Friday-another good day.New specs! /0^0/

The years of chemo destroyed much of Deb's hearing. Lately, her eyes have changed a lot and it was time for new specs. Here they are!

Deb can see so much better but needs to be careful until her eyes adjust to them.

Here's how one combines rest and chemo!

Have a great weekend. No days off for us.

Blessings!

A good day! Strange nights!

Deb had a reasonably good day today!

She had good labs and got her iv's at the clinic. She is neutrapenic so I brought her home and fixed her lunch. She had a good appetite.

We have to keep her isolated, wear a mask in public, and endure as she continues to lose her immune system until it rebuilds itself.

Deb loves to draw, color, and paint. I bought her an Escher 'coloring book', some colored pencils and crayons so she could pass the time easier. You can't read all day long!

At night she has vivid dreams as a result of the chemo. Some are bizarre and frightening  She sometimes shouts or screams out.


You might lift her up tonight, please.

Blessings!

Weds-Still Puny!

Deb felt puny thus morning and besides nausea and diarrhea, she was freezing. I put 4 blankets on her and she was still cold. She had such low blood pressure she was given two liters of fluids.

Tonight she simply had to have mashed 'taters. Nothing else would do. The lady wants 'tater's: that's what she got!

Clinic report time is 9 am tomorrow.

More when we get news!

Blessings!

Tuesday-News and music. What's cooking!

Deb was woozy most of the day. By now you know that is a technical term we use! She saw Robin Roberts wearing a cover over her lines so she cut the end off a sock to make her own arm cover so the lines don't get hung or pulled. It's a style thing, 'ya know?

We have good news, in our opinion. The lesion on Deb's breastbone seems to be shrinking! PTL! We asked the doc what we would do to keep it shrunk and he replied 'that's the $64,000 question', referencing an old TV show by that title.

When we got Deb home she wanted to nap and has no appetite. For supper she had 1 English muffin dry.

I had to make a double pharmacy run, a hardware store run, and a grocery run. This evening I've used several of Deb' s recipes that were published in our church cookbook about 25-30 years ago. Since our copy is at home I asked angel Doris to email them. Thanks Doris!

 I cooked a batch of each to freeze. I am trying to build up a stock of quick breakfast items because it is tough and going to get tougher to get her  up and to the clinic each morning for the next few weeks and at least one of us has to eat!

So, since you know all our other secrets, here are the recipes Deb made up when we first married.

Bran Muffins

2 c. boiling water

2 c. 100% All Bran cereal

3 c. sugar or honey

1 c. shortening

4 eggs

5 1/2 c. all purpose flour, sifted

1 t. salt

1 t. baking soda

1 qt. buttermilk

4 c. 40% bran flakes cereal

1 c. nuts, chopped, optional

1 c. raisins, optional

Pour water over all bran.  set aside.  cream sugar, shortening and eggs.  add flour, salt and soda alternately with buttermilk.  add 40% bran flakes and all bran, nuts and raisins.  Mix.  Can refrigerate up to 2 months.  Bake in greased muffin pans at 350% for 30 min.  Yields 6 dozen muffins.

Here's one that I do that's a little simpler, makes fewer, and a little healthier:

Bran Muffins

3 c. all bran cereal

1 c. boiling water

1 c. sugar

3/4 c. applesauce (subs for oil)

1/2 c. egg substitute (or 2 eggs)

2 1/2 c. whole wheat flour

2 1/2 t. baking soda

1/2 t. salt

2 c. buttermilk (you can make buttermilk by mixing 2 c. skim milk w/2 T. lemon juice)

Pour water over bran cereal and let stand.  Mix together remaining ingredients then add softened cereal.  Bake as many as desired in muffin tins sprayed with cooking spray.  Bake at 400 for 15-20 min.  Keeps in frig. for 2 wks., add raisins, blueberries or nuts.

Vern's favorite appetizer

1 lb. bulk sausage

1 lb. ground beef

1 lb. processed American cheese

1 t. nutmeg

1 t. oregano

Rye squares

Brown together sausage and ground beef; drain.  Add cheese with nutmeg and oregano.  Mix well.  Spread on rye bread squares.  Heat under broiler until bubbly.  May be frozen and reheated later.  Yields 16 servings.

Got them all cooked and when they are cool, in the freezer they will go.

Now, you know I'm a sucker for beautiful piano music played on the grand in the foyer at the chemo clinic. Today, David, a 15 year old, was playing classics. Listen to a moment of his extended playing.

Monday, Monday,... + contact info

Steve was Deb's nurse today. He is very good and is the only male nurse in the chemo infusion center. The lady nurses are always playing pranks on him.

He has a Christian band and plays churches and events most weekends.

Deb came off the 24/7 chemo pump bag today so my burden has been significantly reduced! PTL!
Now that nasty old chemo is really going to town on Deb and she has all the bad symptoms of chemo hitting her hard. The next few weeks will be tough. She is woozy and getting around like a feeble grannie women. Pray that she will not fall and that she can endure these bad affects.

Because she still needs meds, they sent us home with three five-hour infusers for me to hook up. We just finished two if them and I put the last one on. It was hard for Deb to get around with the two, one hooked to her arm, the other hooked to her upper chest, so, she pulled off her new hat and used it to make an infuser nest! Good thinking!

Tomorrow its back the chemo clinic for another day of it. The APNs are really watching her because she is so prone to pneumonia.

I'm making a grocery/pharmacy list and about to head out for a few minutes. Deb's appetite is very poor and she has requested English muffins for supper. I need something a little better ;)

Been doing laundry and hope to get the place vacuumed later. Our new vacuum has HEPA filters so hopefully we can get the place better sanitized as the neutrapenia overtakes Deb.

All it will take is just one little germ in the wrong place to give her fits as her immune system drops to zero for several weeks.

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Our emails : replace AT with @ to fight spammers who have been on this blog already.

deb.darley  AT gmail.com     cell 404 944-3311

vern AT mindspring.com       cell 770 310-7169

We are on Central time in Arkansas. Eastern time in Ga.

If you want our address, please send an email and ask for it . Don't want to provide burglars our addresses.

Big post! Deb, Art, etc

Getting labs

Deb really begin to feel the strong chemo today. Overnight she gained 6 pounds! She spent all day being served by nurse Madeline who is from England. When I dropped Deb off at the front door on this Sunday morning, I went to park the car in the chemo clinic area about 8:15 am .There were already a number of classmates already parked. As quiet as our lives might be on any Sunday morning, hospitals and clinics around the world are full of hurting people. Now that I've been here, I never pass a facility without thinking about all the folks and caregivers inside.

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When Deb 'graduated' from the original treatment, she had a ceremony of the Seeds of Hope where she placed a seed in the large stone seed as a memorial of having finished her treatment. Here are the seeds that have been placed since then.

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Click on pix to enlarge

The nurses station keeps a seasonal display for our enjoyment. Since it is Olympic Season, here is the display.

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While Deb slept this morning I went to the hospital chapel service and was greatly encouraged. Here is the chapel window.

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As I said a few days ago, there is an art exhibit here in the hospital with artwork on display with a legend about the who/what/why the piece was done for. Here is the main info poster. I will post what I liked the most.

Chemo-day 2

Saturday was day 2 of the heavy chemo and the 24/7 'bag'. Deb was really feeling woozy ( a medical term) from the 200 mg dex. Previous high dosage of dex was 20 mg!!! A 10X increase! The nurses were whistling at that dosage. Deb needed assistance getting around as she was somewhat unstable. Falls are to be avoided!

From the APNs (Advanced Practice Nurses) we found out that there are absolute maximum dosages regardless of a person's size. But, dosages below maximum are based on a person's size. They said that it is possible that a small person like Deb actually gets more chemo percentage -wise than a large person. Deb is getting very large dosages.

We spent the whole day in clinic. On the way home we had to stop at the pharmacy for more meds. You should see our collection!

Deb wanted to come straight home to the condo. She asked me to make her some potato soup while she rested. Then I went shopping for a few items we need for our Arkansas condo.

Potato soup: The recipe for potato soup is basically chopping up organic spuds, adding half a onion, and chopping up organic celery. Season with salt and pepper and boil until the spuds are soft. Deb likes to mash up the spuds.

Today is more of the same. We are very tired because all night long the pumps in the bag gave off warnings that chemo flow was blocked. We had to get up and resolve the blockages many times during the night.

Deb is descending into a long period of nutrapenia. Her blood counts are on their way down. Soon she will have to wear a mask around others. I am going to have to do a cleaning job on the condo to make it as sanitary as possible. Last night I bought  a vacuum with a special filter. I'm also going to prep some favorite foods so Deb will have some more foods ready.

I was too tired to post last night, so this is posted early Sunday morning. Gotta run!

Blessings!