A short visit with Eliana results in Deb doubting Vern's nurturing ability and a fear that he's lost his touch.
Saturday, July 31, 2010
Saturday night-Eliana visit
A short visit with Eliana results in Deb doubting Vern's nurturing ability and a fear that he's lost his touch.
Wednesday, July 28, 2010
Life at home...
Quiet and restful. Not nearly as exciting or newsy as life in Arkansas because we are in rest mode. We are soooo tired!
Deb has been a little puny and not felt so hot the past few days.
Food angels drifting in and out bringing goodies. Thanks! Deb needs a break from my cooking.
We got some meds shipped in today that are considered 'bridge chemo.' That means interim chemo until we get back to Arkansas for the big stuff. 28 pills in a small pack=$5,900. I told Deb she has to take 'em no matter where they get dropped! They start in the morning and she will probably get chemo-brain and be more sleepy.
Amanda, Jon, and Eliana visited Deb this afternoon. All were so tired they took a group nap. With a newborn, sleep anytime you can! Do I hear an amen?
Trey is making arrangements to come for a few days from Europe. He can't bring the family this trip.
We go back on Aug 10th.
We really wanted to be in church Sunday but Deb was so tired she slept most of the day. We wanted to visit everyone.
Blessings all!
Vern
Deb has been a little puny and not felt so hot the past few days.
Food angels drifting in and out bringing goodies. Thanks! Deb needs a break from my cooking.
We got some meds shipped in today that are considered 'bridge chemo.' That means interim chemo until we get back to Arkansas for the big stuff. 28 pills in a small pack=$5,900. I told Deb she has to take 'em no matter where they get dropped! They start in the morning and she will probably get chemo-brain and be more sleepy.
Amanda, Jon, and Eliana visited Deb this afternoon. All were so tired they took a group nap. With a newborn, sleep anytime you can! Do I hear an amen?
Trey is making arrangements to come for a few days from Europe. He can't bring the family this trip.
We go back on Aug 10th.
We really wanted to be in church Sunday but Deb was so tired she slept most of the day. We wanted to visit everyone.
Blessings all!
Vern
Monday, July 26, 2010
Return Date to Little Rock
August 10th is our return date. Deb has a 7am test on the 11th.
Deb was very tired and had stomach distress most of today.
Deb was very tired and had stomach distress most of today.
Monday labs in Georgia
While home, the cancer clinic in Ark. Monitors Deb thru local labs faxed and overnighted . That way, if something goes downhill they will see it and notify us to return ASAP.
Sunday, July 25, 2010
Sunday morning-BLESSED!
Deb is still sleeping...in her own bed! The old saying about a man's home being his castle is so true! It is so good to be home!!!! We are both so tired!
I titled this blog BLESSED because we are!
-Blessed because of our supportive friends,family,church,school,jobs,insurance,doctors,nurses,hotel staff,children,etc. The list goes on and on.
-We returned home and friends met us at the plane. A fuel angel refueled Gracie. The car was serviced and the AC was running. The house was cleaned.Clean sheets on the bed. The yard was neat. Food was scheduled in. An ice cold watermelon was in the fridge for Deb's supper.
Once again , Deb was 'pinked.'(a symbolic welcome another baby grand daughter outdoor decoration). We are so blessed!
So,thanks to all the angels out there looking after us! We so appreciate each and everyone of you!
We do not have a return date yet because the next round of treatment will be chemo cocktails with lots of testing. The treatment plan has to flow on a daily basis and in order, so the scheduler was looking for the needed tests and times so she could put together our return trip.We expect a call in the next few days.
Deb will be taking 'Bridging chemo' here at home until we return. Dex and thalidomide will be on the menu plus lots of meds. Twice weekly labs from our local doc and the hospital. So, even though we are home, treatment continues.
One of the eye-opening things Dr Barlogie showed us in the presentation last week was how the pet scan helps identify cancer in the body. The routine for Deb's pet scans has been to report to the test fasting. Drink a radioactive sweet drink (she says it tastes like a sweet Fanta Orange drink). Wait an hour for it to be absorbed throughout the body, then lie perfectly still on a cold metal table with the huge circular very noisy ring around your body.Did I mention it is cold? Deb says 'brrrrr'.
The part we had not seen until Dr Barlogie showed us was that the cancer cells are greedy and grab the sweet drink. The radioactive substance makes the cancer show up on the report screen. Although multiple myeloma usually starts in bone marrow, Dr Barlogie showed us pet scans of liver and brain invasion. The pet scans show the cancer cells as bright colors. Wow!
Hope each of you has a blessed day! To all my flying buds heading up to Oshkosh, fly safe!
Vern
I titled this blog BLESSED because we are!
-Blessed because of our supportive friends,family,church,school,jobs,insurance,doctors,nurses,hotel staff,children,etc. The list goes on and on.
-We returned home and friends met us at the plane. A fuel angel refueled Gracie. The car was serviced and the AC was running. The house was cleaned.Clean sheets on the bed. The yard was neat. Food was scheduled in. An ice cold watermelon was in the fridge for Deb's supper.
Once again , Deb was 'pinked.'(a symbolic welcome another baby grand daughter outdoor decoration). We are so blessed!
So,thanks to all the angels out there looking after us! We so appreciate each and everyone of you!
We do not have a return date yet because the next round of treatment will be chemo cocktails with lots of testing. The treatment plan has to flow on a daily basis and in order, so the scheduler was looking for the needed tests and times so she could put together our return trip.We expect a call in the next few days.
Deb will be taking 'Bridging chemo' here at home until we return. Dex and thalidomide will be on the menu plus lots of meds. Twice weekly labs from our local doc and the hospital. So, even though we are home, treatment continues.
One of the eye-opening things Dr Barlogie showed us in the presentation last week was how the pet scan helps identify cancer in the body. The routine for Deb's pet scans has been to report to the test fasting. Drink a radioactive sweet drink (she says it tastes like a sweet Fanta Orange drink). Wait an hour for it to be absorbed throughout the body, then lie perfectly still on a cold metal table with the huge circular very noisy ring around your body.Did I mention it is cold? Deb says 'brrrrr'.
The part we had not seen until Dr Barlogie showed us was that the cancer cells are greedy and grab the sweet drink. The radioactive substance makes the cancer show up on the report screen. Although multiple myeloma usually starts in bone marrow, Dr Barlogie showed us pet scans of liver and brain invasion. The pet scans show the cancer cells as bright colors. Wow!
Hope each of you has a blessed day! To all my flying buds heading up to Oshkosh, fly safe!
Vern
Saturday, July 24, 2010
In Gracie about to depart at 9:20
Deb is in the back seat peeking out.
Pilot Angel Steve Castlen brought Gracie out right on schedule and carried us home. Steve is a brand new judge and tried his first case Friday.
The hanging is next Monday. (joke)
Friday, July 23, 2010
Dr sending us home!
Setting up return schedule now. Still with nurse. Hope to be home after lunch tomorrow.
Deb got an excellent report,ptl!
Sent from my iPhone
Thursday, July 22, 2010
Plan for coming home Saturday
All dependent Dr Nair's concurrence on Friday noon appointment
Friday morning:
Labs-08:00am
Remove line from Deb's neck-09:00am
Dr Nair-12:00
Pack if released
Saturday:
Limo arrives at Markham House-08:30am
Arrive North Little Rock Airport-09:00am
Takeoff in Gracie-09:30am CT (2:30 enroute)
Arrive PTC/ KFFC-1:00pm ET Hangar D-30 unload
Home-2:00 pm ET
You may track our flight progress if you want to at:
http://flightaware.com/
Put our tail number in the yellow box on the left side where is says Private Flight Tracker: N353RV
Click on the Blue Box-Track Flight
Watch our progress home.
Friday morning:
Labs-08:00am
Remove line from Deb's neck-09:00am
Dr Nair-12:00
Pack if released
Saturday:
Limo arrives at Markham House-08:30am
Arrive North Little Rock Airport-09:00am
Takeoff in Gracie-09:30am CT (2:30 enroute)
Arrive PTC/ KFFC-1:00pm ET Hangar D-30 unload
Home-2:00 pm ET
You may track our flight progress if you want to at:
http://flightaware.com/
Put our tail number in the yellow box on the left side where is says Private Flight Tracker: N353RV
Click on the Blue Box-Track Flight
Watch our progress home.
Thursday Afternoon
Deb had morning labs and rested today. Mid-morning Vern attended a pre-opening tour of the new 12 story Myeloma Building. Deb was spent from the night out at Dr Barlogie's presentation last evening.(My brain was hurting also!)
So, after watching final construction for the months we've been coming out here, I finally got to go inside for a tour, along with some of our classmates and nurses.
WOW! It is so beautiful and well designed for the patients and caregivers! There can't be a nicer medical facility on the planet. The move in will occur next week while we are home(we hope).
So, here are a few snapshots made with my iPhone. They don't do it justice.
Wednesday, July 21, 2010
Wednesday
Today was exciting as it seems that Deb's labs indicate that perhaps at the Dr Nair visit Friday we will be released for home. That's cool!
Tomorrow's labs will tell if the upward trend is real. If so,we will schedule a port removal so the triple line in Deb's jugular vein will be removed. Pure magic to me!
Many of the meds have already been dropped.
So, after a short combat nap this afternoon and a simple supper, we joined about 75 classmates at a reception/technical presentation by the head honcho of the myeloma institute Dr Barlogie.
He is an vibrant speaker and certainly the top statistical presenter I've ever heard. His explanation of the statistics showing the effectiveness of various chemo blends and the time required to get various levels of effectiveness in place was remarkable. He spoke in plain words about extending life, desire to defeat this cancer, and the pain folks go through in order to get to remission. He acknowledged that the clinic here is much tougher on patients but gets better results.
The charts he shared also clearly indicated that this is a deadly awful disease and that a certain number of people die from it. Untreated or poorly treated looks like about 1.5 years life expectancy.
Takeaway points:
>High risk patients treated here (like Deb) who survive out past 3 years will surpass the life expectancy of low risk cases.
>High risk patients must compress the treatment time frame to prevent the cancer from regaining a foothold. In practical terms, we cannot stay at home very long between treatment cycles if Deb is to survive long term.
>Although myeloma is considered incurable, long term results here are close to changing incurable to curable within a few more years.
>Even though the science involved is way over our heads, we must trust those here who do understand it.
>This is no picnic. This cancer kills!
Here are some pix of Dr Barlogie in action:
Tuesday, July 20, 2010
Eliana update
Amanda and Jon took Eliana home this afternoon. Deb and I got to meet her via Skype. She's a doll!
It will be so much fun to see cousins Evelyn and Eliana playing together when Trey and Katka come to the states!
They are beautiful blessings!
Deb and Vern
It will be so much fun to see cousins Evelyn and Eliana playing together when Trey and Katka come to the states!
They are beautiful blessings!
Deb and Vern
Finally: a short field trip!
Because of her improving immune system, we took a short field trip. Deb was tired but glad to see new turf.
Tuesday afternoon
Deb is doing better. Labs are improving,white blood count up,CRP down. The boss nurse (APN) just met with us. We meet with Dr Nair on Friday at noon to find out if we can come home or not.
Tomorrow evening we have a reception and myeloma q&a with the big boss Dr. He is in charge of all the myeloma research and treatment here and invented many of the protocols.
Thursday morning there is a tour of the new cancer center which opens in August.We are some of the last patients in the old cancer center and first in the new skyscraper. More on that later.
Which in your trivia notes, remember that old Vern flew the last trip into the old Atlanta terminal and first out of the current terminal back with good old Eastern Airlines (rip)
Amanda and Eliana may get to go home today. We talked with Amanda earlier and she sounded great. More pix are promised.
Blessings all!
Vern
Tomorrow evening we have a reception and myeloma q&a with the big boss Dr. He is in charge of all the myeloma research and treatment here and invented many of the protocols.
Thursday morning there is a tour of the new cancer center which opens in August.We are some of the last patients in the old cancer center and first in the new skyscraper. More on that later.
Which in your trivia notes, remember that old Vern flew the last trip into the old Atlanta terminal and first out of the current terminal back with good old Eastern Airlines (rip)
Amanda and Eliana may get to go home today. We talked with Amanda earlier and she sounded great. More pix are promised.
Blessings all!
Vern
Monday, July 19, 2010
Alert: Eliana born 6:20am ET
Long labor
8# 13.5oz
22.5"
8# 13.5oz
22.5"
More news when we get it.
Den and Vern
Sent from my iPhone
Sunday, July 18, 2010
Friend Carol gave "bee hat" to Deb
Deb's name Deborah means Bee. She loves and collects all things with Bees.
Just got labs. Counts coming up. Getting platelets now since they are the last to recover.
Saturday, July 17, 2010
Saturday evening
The white blood count is up a bit. Two infusers for tonight. Deb was HUNGRY! I made some soup she devoured and then she snacked some more before retiring. I see life stirring in Deb-PTL!
Vern
Vern
Saturday afternoon
Right now Deb is in her clinic chair getting an iv. She already had her wonderful tummy shot.
Last night and this morning have been peaceful and quiet.Last evening Deb's appetite suddenly turned on. She gave me a specific meal she wanted.fortunately I had the makings for it. Guess what her palate craved?
Angel hair pasta,with olive oil,Italian seasoning, and chipped and peeled tomatoes with melted cheese mixed in. That's what Deb wanted so that's what chef Vern made. She ate a nice serving.
Now for breakfast,Deb wanted to have the watermelon I had picked up.After washing it carefully with antiseptic soap in our small kitchen sink,I cut it up and gave her a bowl of the melon heart: Yuk! She spit it out because was 'burning' her mouth. Ever tasted a fiery watermelon? It's chemo taste buds.
Since we cannot get labs at the hotel on weekends, we had a long quiet morning. Deb asked me to read scripture to her, so I read Ephesians chapter 5 & 6 which deal with the relationships of husbands and wives, parents and children. Good advice there in the human owners manual!
So, were are eagerly awaiting today's labs because based on the positive way Deb is feeling and acting,we think they will be good. I have the makings for spagetti and meat sauce srpet aside for Deb when her appetite really comes back. After losing more than fifty pounds she deserves a nice meal.
Still no baby. We keep listening for Amanda's phone ring.
Blessings all
Vern
Last night and this morning have been peaceful and quiet.Last evening Deb's appetite suddenly turned on. She gave me a specific meal she wanted.fortunately I had the makings for it. Guess what her palate craved?
Angel hair pasta,with olive oil,Italian seasoning, and chipped and peeled tomatoes with melted cheese mixed in. That's what Deb wanted so that's what chef Vern made. She ate a nice serving.
Now for breakfast,Deb wanted to have the watermelon I had picked up.After washing it carefully with antiseptic soap in our small kitchen sink,I cut it up and gave her a bowl of the melon heart: Yuk! She spit it out because was 'burning' her mouth. Ever tasted a fiery watermelon? It's chemo taste buds.
Since we cannot get labs at the hotel on weekends, we had a long quiet morning. Deb asked me to read scripture to her, so I read Ephesians chapter 5 & 6 which deal with the relationships of husbands and wives, parents and children. Good advice there in the human owners manual!
So, were are eagerly awaiting today's labs because based on the positive way Deb is feeling and acting,we think they will be good. I have the makings for spagetti and meat sauce srpet aside for Deb when her appetite really comes back. After losing more than fifty pounds she deserves a nice meal.
Still no baby. We keep listening for Amanda's phone ring.
Blessings all
Vern
Friday, July 16, 2010
Friday afternoon
Deb is in her chair waiting for her infusers for tonight. Labs show her white blood count is coming up.PTL! She had more blood platelets again.The apn just came in and is advising her.
Our classmate in the room with us is most unusual. Myeloma in non- hereditary: however,the father and daughter (age 40) were both diagnosed within two months of each other.The mother is running between the two of them. Both are hard cases .I really feel sorry for them.
The apn just assured Deb that last night was the worst and she would feel better tonight. She did caution that there will be bad pain in the pelvis and large bones as the marrow is reestablished thru the weekend.
It's so good to be guided by the voice of experience.
Lungs are clear: remember,Deb has had pneumonia twice now,so that is great news.
Waiting is what we do the most of. When the infusers get here,we can go home.
Blessings all!
Vern
Our classmate in the room with us is most unusual. Myeloma in non- hereditary: however,the father and daughter (age 40) were both diagnosed within two months of each other.The mother is running between the two of them. Both are hard cases .I really feel sorry for them.
The apn just assured Deb that last night was the worst and she would feel better tonight. She did caution that there will be bad pain in the pelvis and large bones as the marrow is reestablished thru the weekend.
It's so good to be guided by the voice of experience.
Lungs are clear: remember,Deb has had pneumonia twice now,so that is great news.
Waiting is what we do the most of. When the infusers get here,we can go home.
Blessings all!
Vern
Friday Morning miseries
Deb's not feeling so hot this morning. She is experiencing the full joys of chemo. Lot's of cleanup to do. Morning labs were taken in the room next door, and we are so grateful for the closeness benefit for Deb.
Youparr did get to go home for a few weeks. Her granddaughter was especially delighted!
We started off the morning with another infuser of antibiotics.
Deb has ZERO interest in food today although she ate 2 crackers and half a peeled pear.I have to encourage her. She can barely get her meds down also.
We had planned to make her spaghetti for our celebration when she starts back up on blood count and has her appetite back. I bought the makings and cooked the meat for the meat sauce this morning and put it in the freezer until needed.
While Deb was napping after the morning labs I took a long brisk walk. Even at 9am the temp felt like a hundred.
How's the weather holding up where you are? Heard there was even a small earthquake in DC this morning. Anyone feel it?
Blessings all! Have a great weekend! We don't have weekends out here.
Vern
Youparr did get to go home for a few weeks. Her granddaughter was especially delighted!
We started off the morning with another infuser of antibiotics.
Deb has ZERO interest in food today although she ate 2 crackers and half a peeled pear.I have to encourage her. She can barely get her meds down also.
We had planned to make her spaghetti for our celebration when she starts back up on blood count and has her appetite back. I bought the makings and cooked the meat for the meat sauce this morning and put it in the freezer until needed.
While Deb was napping after the morning labs I took a long brisk walk. Even at 9am the temp felt like a hundred.
How's the weather holding up where you are? Heard there was even a small earthquake in DC this morning. Anyone feel it?
Blessings all! Have a great weekend! We don't have weekends out here.
Vern
Thursday, July 15, 2010
NEWS ALERT: end in sight
The boss nurse(apn) just had a long visit with us. Based on the progress Deb is making, we are about to go to antibiotic infusers round the clock while Deb continues to recover from the stem cell transplant. If things continue as they seem to be going, we may be (emphasis may) get to head home in 7-10 days. That is such good sounding news to us, we' ll take it!
So then back and forth for two courses of chemo and recovery, then back for the second stem cell transplant, then long term maintenance. Live happily ever after....if all goes well.
PTL!
Vern
So then back and forth for two courses of chemo and recovery, then back for the second stem cell transplant, then long term maintenance. Live happily ever after....if all goes well.
PTL!
Vern
Thursday afternoon-FDA comments
Well,while Deb was napping they called me from the hotel and said another lady was being taken to Kroger and did I want to go.So,off I went.The lady,caregiver of another classmate and I agreed on a rendezvous point so we could call the hotel van once for this trip,which is miles opposite the hospital pickups.
Did the shopping,called the van,both of us loaded up.She is an oriental lady with a British accent. She started discussing her job which is as an international business consultant. Then she talked about her husband's job: 33 years with the FDA. Then she started in on the Chinese. She claimed that because they were a godless society,they had no basis for business morality so therefore they worshipped money. She said quality,health,safety issues were never considered among Chinese manufacturers and that she and her husband always read origin of product labels so they could avoid Chinese meds,foods, and medical products. She had such strong views I asked what her ethnic background was. She said Singapore with advanced degree from the UK.
Now Deb is settled in her chair in 7C and is about to start a saline iv. Her white blood count is same as yesterday: .02 . Deb's CRP has begun creeping up and she has a low-grade fever. She is very weak but cheerful under the circumstances.
Vern
Did the shopping,called the van,both of us loaded up.She is an oriental lady with a British accent. She started discussing her job which is as an international business consultant. Then she talked about her husband's job: 33 years with the FDA. Then she started in on the Chinese. She claimed that because they were a godless society,they had no basis for business morality so therefore they worshipped money. She said quality,health,safety issues were never considered among Chinese manufacturers and that she and her husband always read origin of product labels so they could avoid Chinese meds,foods, and medical products. She had such strong views I asked what her ethnic background was. She said Singapore with advanced degree from the UK.
Now Deb is settled in her chair in 7C and is about to start a saline iv. Her white blood count is same as yesterday: .02 . Deb's CRP has begun creeping up and she has a low-grade fever. She is very weak but cheerful under the circumstances.
Vern
Thursday morn-not doing so well today
Deb seemed to have a good night and even had a few bites of peeled plum and Canadian bacon. She did her morning labs and then laid down for a morning nap. Then, bad indigestion followed by cookie tossing. A cool wash clothe and a few sips of cold ginger ale seemed to calm her.
It will be interesting to see how the white blood count will go.
It's very hot out here. I made a short grocery list and rode one of the hotel shuttle vans out. It broke down, so I'll have to wait on the grocery list. Its amazing how handy a car is!
From the pop quiz previous post #5-Gabby Hays
It will be interesting to see how the white blood count will go.
It's very hot out here. I made a short grocery list and rode one of the hotel shuttle vans out. It broke down, so I'll have to wait on the grocery list. Its amazing how handy a car is!
From the pop quiz previous post #5-Gabby Hays
Wednesday, July 14, 2010
Weds evening-Roy Rogers pop quiz
Deb spent the afternoon at the clinic. We shared a room again with Youparr. The 80 year old Thai lady Youparr may get to go home tomorrow. Her 30+ yr old granddaughter has been here caring for her grandparents since before we came here our first time back in the late winter. They are really eager to get home. The Dr decides for them tomorrow. Youparr wants to visit her 102 year old mother in Thailand.
Deb had more blood,platelets, and fluids. Her white blood count was 0.02. Yesterday was 0.03. Monday was 0.04 Sunday was 0.14. Do you see a trend?
That means she has practically no ability to fight germs. That means dietary care, masks in public,wash hands often,etc.
So, being cooped up here in the apt, we were running out of groceries with both of us craving something different. There is a meat & 3 chain out here called the Dixie Cafe. It has Southern cooking and is like a very fancy Po' Folks. Since Deb can't go there, a take out order was arranged. Deb wanted some pinto beans and cornbread. They had a choice of a pint or a quart of pintos. Deb was so hungry she insisted on the quart. She ate about 4 spoons full.(Guess what her lunch is tomorrow?) Eyes bigger than mouth? She hasn't eaten a cereal bowl of food total in a week. The hotel shuttle drove me over to get chow. But, to get her to eat, I do most anything. For today's lunch I even peeled a tomato so she could have a tomato-cucumber-vinegar salad...about three bites full.
I really hit a 'you're getting old' thing today. While waiting at the clinic beside Deb, I was browsing some websites. I saw that Roy Roger's stuffed horse Trigger was for sale in Branson, Mo. Last I heard, Trigger was in the Rogers museum in California. Apparently when Roy and Dale died, their kids moved the museum to Branson. When I went to that site, they were announcing the closing and selling off of Roy's museum contents because very few people attended the museum because nobody today knows who Roy Rogers is.
Can you believe that???? Roy Rogers? When I was a kid, Christmas presents and birthday presents usually included some Roy Rogers or Dale Evans goodies. Boots, six-shooters, hats, lunch boxes,etc
Old age shock hit me!
So, tell the rest of us about your Roy Rogers/ Dale Evans memories please. Enlighten these whippersnappers.
Pop Quiz:
1) What was Dale's horse's name?
2) What was Roy's dog's name?
3) What singing group was Roy part of?
4) What song did Dale and Roy always close with?
5) Who was the old codger that cooked for their roundups and did odd jobs?
6) Extra credit: Roy's real name?
Deb had more blood,platelets, and fluids. Her white blood count was 0.02. Yesterday was 0.03. Monday was 0.04 Sunday was 0.14. Do you see a trend?
That means she has practically no ability to fight germs. That means dietary care, masks in public,wash hands often,etc.
So, being cooped up here in the apt, we were running out of groceries with both of us craving something different. There is a meat & 3 chain out here called the Dixie Cafe. It has Southern cooking and is like a very fancy Po' Folks. Since Deb can't go there, a take out order was arranged. Deb wanted some pinto beans and cornbread. They had a choice of a pint or a quart of pintos. Deb was so hungry she insisted on the quart. She ate about 4 spoons full.(Guess what her lunch is tomorrow?) Eyes bigger than mouth? She hasn't eaten a cereal bowl of food total in a week. The hotel shuttle drove me over to get chow. But, to get her to eat, I do most anything. For today's lunch I even peeled a tomato so she could have a tomato-cucumber-vinegar salad...about three bites full.
I really hit a 'you're getting old' thing today. While waiting at the clinic beside Deb, I was browsing some websites. I saw that Roy Roger's stuffed horse Trigger was for sale in Branson, Mo. Last I heard, Trigger was in the Rogers museum in California. Apparently when Roy and Dale died, their kids moved the museum to Branson. When I went to that site, they were announcing the closing and selling off of Roy's museum contents because very few people attended the museum because nobody today knows who Roy Rogers is.
Can you believe that???? Roy Rogers? When I was a kid, Christmas presents and birthday presents usually included some Roy Rogers or Dale Evans goodies. Boots, six-shooters, hats, lunch boxes,etc
Old age shock hit me!
So, tell the rest of us about your Roy Rogers/ Dale Evans memories please. Enlighten these whippersnappers.
Pop Quiz:
1) What was Dale's horse's name?
2) What was Roy's dog's name?
3) What singing group was Roy part of?
4) What song did Dale and Roy always close with?
5) Who was the old codger that cooked for their roundups and did odd jobs?
6) Extra credit: Roy's real name?
Pear angels make delivery
Deb is very, very weak this morning. Had labs at 8 am. Getting blood xsfusion at 1 pm.
Very hot outside.
Vern
Tuesday, July 13, 2010
Tuesday afternoon
We had severe thunderstorms yesterday and last night.going back to the hotel we were in lots of heavy rainwater in the streets. The van driver was so kind to pull under an overhang to get Deb onboard with minimal wetness. That's the story here in Ark ; kindness on every hand.
We had morning labs our room this morning because there was no empty room for the nurse to set up in.You cannot get any more convenient than that. Deb had a good appetite and had a nice breakfast. For lunch I fixed her some black beans and rice. She is not supposed to have leftovers, lunch meats,salads. Because of no immune system, germs are enemy number one.
Yesterday her white blood count was .14 .Today it is .04. That's just about zip. This is day six since her stem cell transplant. She should continue down a few more days. Today Deb is getting more iv fluids,blood, and platelets. The goal is to give growth factor shots in the tummy to force the baby stem cells to turn into white blood cells.That is the priority. Therefore,since her marrow is non productive,her supply of platelets and red cells will come via iv.Once her white blood cells come back up to 2.0 or higher,the growth factor shots cease and the marrow will reestablish and start making new platelets and red blood cells.
Deb is in the room with the lady from Kentucky who is wanting to quit and go home.Deb is such an encourager!
We had morning labs our room this morning because there was no empty room for the nurse to set up in.You cannot get any more convenient than that. Deb had a good appetite and had a nice breakfast. For lunch I fixed her some black beans and rice. She is not supposed to have leftovers, lunch meats,salads. Because of no immune system, germs are enemy number one.
Yesterday her white blood count was .14 .Today it is .04. That's just about zip. This is day six since her stem cell transplant. She should continue down a few more days. Today Deb is getting more iv fluids,blood, and platelets. The goal is to give growth factor shots in the tummy to force the baby stem cells to turn into white blood cells.That is the priority. Therefore,since her marrow is non productive,her supply of platelets and red cells will come via iv.Once her white blood cells come back up to 2.0 or higher,the growth factor shots cease and the marrow will reestablish and start making new platelets and red blood cells.
Deb is in the room with the lady from Kentucky who is wanting to quit and go home.Deb is such an encourager!
Monday, July 12, 2010
Mon afternoon-Chili-Willie
Critically low on platelets...second
D day in a row.So, after her current iv's are Done, it will be blood platelet time. Yesterday we did not get pre
- meds before taking platelets and Deb was miserable all night.Today we will get the pre- meds.
Our formerly faithful electronic thermometer failed last night. We got erratic readings last night. So today the nurse found us an antique glass and mercury filled thermometer. She was appalled when I told her that as kids we would hold mercury in our hands and play with it. Whippersnappers!
Did you ever handle mercury (besides in your tuna fish sandwich or amalgam tooth fillings?)
Deb Is having chills so I 've bundled her up in warm blankets from the warmer. Hope she does better.
Blessings all
Vern
Sunday, July 11, 2010
Waiting for todays labs-Counselor Deb
Deb has spent time counseling two ladies so far. One was so distressed because she had offended her caregiver and did not know how to deal with the disruption in fellowship of a lifelong friend.
The other is a retired teacher from Kentucky.She is so ready to go home. She is debating whether or not to continue treatment or go home and die.
Deb has to take two liters of saline to get her heart rate down. She got her normal shot in the tummy. Looks like several additional hours here today. But,our only alternative is the apartment. Might as well be here and let Deb keep ministering to these ladies.
What did you do today?
We would like to hear about it.
Blessing all
Vern
CONTACT INFO (re-post for convenience)
This blog does not allow us to post a normal email address format. Therefore, please add the 'at' symbol where needed.
Remember, no spaces in an email address. We check emails multiple times a day when able.
Vern Darley= vern at mindspring.com
Deb Darley= deb.darley at gmail.com
Chief Angel Cassy Sims= cassysims at gmail.com
++++++++++++++++++++
Our temporary address in Little Rock in case you want to send a card to Deb.
Deb Darley
c/o Markham House Suites
5120 West Markham
Little Rock, AR 72205
Remember, no spaces in an email address. We check emails multiple times a day when able.
Vern Darley= vern at mindspring.com
Deb Darley= deb.darley at gmail.com
Chief Angel Cassy Sims= cassysims at gmail.com
++++++++++++++++++++
Our temporary address in Little Rock in case you want to send a card to Deb.
Deb Darley
c/o Markham House Suites
5120 West Markham
Little Rock, AR 72205
Sun morn-Your treat to us appreciated
Note our personal email addresses to the right under CONTACTS. We also get messages on our cell phones.
In a previous post, I asked for you to update us on YOUR lives. This blog is not meant to be a one-way communication. A number of you have emailed us and given us updates and Deb and I have so appreciated them. In fact, we would welcome them on an ongoing basis, but even if you are willing to do a one-time-only, that would be a treat too!
Our world out here is pretty limited and while your tomato picking might seem mundane and uninteresting to you, to us staring out a window and living in an endless loop of apartment < > hospital, that cutworm would add excitement and reality to our lives.
Deb is sitting quietly in her recliner and we are about to read to one another. We had a light breakfast and due at the hospital at 1 pm today.
More later...
Vern
In a previous post, I asked for you to update us on YOUR lives. This blog is not meant to be a one-way communication. A number of you have emailed us and given us updates and Deb and I have so appreciated them. In fact, we would welcome them on an ongoing basis, but even if you are willing to do a one-time-only, that would be a treat too!
Our world out here is pretty limited and while your tomato picking might seem mundane and uninteresting to you, to us staring out a window and living in an endless loop of apartment < > hospital, that cutworm would add excitement and reality to our lives.
Deb is sitting quietly in her recliner and we are about to read to one another. We had a light breakfast and due at the hospital at 1 pm today.
More later...
Vern
Saturday, July 10, 2010
Saturday morning
We listened for a phone call with at least one ear all night as Amanda's delivery day is soon!
Deb has a remarkable bounce of energy today. Must have been that delicious infuser of magnesium I gave her last night! She was sleeping so hard I was able to remove it last night when it emptied without her awakening.
I needed to sort and start laundry this morning and Deb got involved in sorting. You just can't understand how good it is to have something 'normal' in life. I'm trying to get 3 loads done before we have to leave at about 12:30 CT.
We had a real encouraging treat this morning. I went up to the 3d floor to gather some breakfast items. A family with a table full of cute little kids was there. As I gathered the food items, one little girl was singing cheerfully with her squeaky little voice. I went to see her and she had on a shirt with her name on it...Eliana, which means "God answered". That is the name of Amanda's baby girl we are waiting on. I went back and told Deb and she went up on the elevator to meet her. We took that as a positive sign of encouragement! Thanks, Lord!
Deb continues to lose weight and by the time we go home we may have to buy some new clothes.
We talked for a long time this morning about life I read her a poem that a friend sent us. It speaks about the stages or seasons of life that we all go thru. Most people follow a regular sequence, but some people's lives don't. For example, my two brothers lives did not follow the normal pattern. Allan died at age three and Terry died at age 35. None of us know our days, so the scriptures encourage us to not waste them and not presume upon them.
Where are you in your life cycle? Any changes you should make to ensure the most important issues of life are handled while you have the time and ability?
Here is the borrowed poem we were sent, supposedly written and left behind by an elderly man who died in a nursing home.
Crabby Old Man
What do you see nurses? . . . .. . What do you see?
What are you thinking . . . . . when you're looking at me?
A crabby old man . . . . . not very wise,
Uncertain of habit . . . . . with faraway eyes?
Who dribbles his food . . . . . and makes no reply.
When you say in a loud voice . . . . . 'I do wish you'd try!'
Who seems not to notice . . . . . the things that you do.
And forever is losing . . . . . A sock or shoe?
Who, resisting or not . . . . . lets you do as you will,
With bathing and feeding . . . . . The long day to fill?
Is that what you're thinking? . . . . . Is that what you see?
Then open your eyes, nurse . . . . . you're not looking at me.
I'll tell you who I am. . . . . . As I sit here so still,
As I do at your bidding, . . . . . as I eat at your will.
I'm a small child of Ten . . .. . . with a father and mother,
Brothers and sisters . . . . . who love one another.
A young boy of Sixteen . . . . with wings on his feet.
Dreaming that soon now . . . . . a lover he'll meet.
A groom soon at Twenty . . . . . my heart gives a leap.
Remembering, the vows . . . . . that I promised to keep.
At Twenty-Five, now . . . . . I have young of my own.
Who need me to guide . . . . . And a secure happy home.
A man of Thirty . . . . . My young now grown fast,
Bound to each other . . . .. . With ties that should last.
At Forty, my young sons . . . . . have grown and are gone,
But my woman's beside me . . . .. . to see I don't mourn.
At Fifty, once more, babies play 'round my knee,
Again, we know children . . . . . My loved one and me.
Dark days are upon me . . . . . my wife is now dead.
I look at the future . . . . . shudder with dread.
For my young are all rearing . . . . . young of their own.
And I think of the years . . . . . and the love that I've known.
I'm now an old man . . . . . and nature is cruel.
Tis jest to make old age . . . . . look like a fool.
The body, it crumbles . . . . . grace and vigor, depart.
There is now a stone . . . . where I once had a heart.
But inside this old carcass . . . . . a young guy still dwells,
And now and again . . . . . my battered heart swells.
I remember the joys . . . . . I remember the pain.
And I'm loving and living . . . . . life over again.
I think of the years, all too few . . . . . gone too fast.
And accept the stark fact . . . . that nothing can last.
So open your eyes, people . . . . . open and see.
Not a crabby old man . . . Look closer . . . see ME!!
Deb has a remarkable bounce of energy today. Must have been that delicious infuser of magnesium I gave her last night! She was sleeping so hard I was able to remove it last night when it emptied without her awakening.
I needed to sort and start laundry this morning and Deb got involved in sorting. You just can't understand how good it is to have something 'normal' in life. I'm trying to get 3 loads done before we have to leave at about 12:30 CT.
We had a real encouraging treat this morning. I went up to the 3d floor to gather some breakfast items. A family with a table full of cute little kids was there. As I gathered the food items, one little girl was singing cheerfully with her squeaky little voice. I went to see her and she had on a shirt with her name on it...Eliana, which means "God answered". That is the name of Amanda's baby girl we are waiting on. I went back and told Deb and she went up on the elevator to meet her. We took that as a positive sign of encouragement! Thanks, Lord!
Deb continues to lose weight and by the time we go home we may have to buy some new clothes.
We talked for a long time this morning about life I read her a poem that a friend sent us. It speaks about the stages or seasons of life that we all go thru. Most people follow a regular sequence, but some people's lives don't. For example, my two brothers lives did not follow the normal pattern. Allan died at age three and Terry died at age 35. None of us know our days, so the scriptures encourage us to not waste them and not presume upon them.
Where are you in your life cycle? Any changes you should make to ensure the most important issues of life are handled while you have the time and ability?
Here is the borrowed poem we were sent, supposedly written and left behind by an elderly man who died in a nursing home.
Crabby Old Man
What do you see nurses? . . . .. . What do you see?
What are you thinking . . . . . when you're looking at me?
A crabby old man . . . . . not very wise,
Uncertain of habit . . . . . with faraway eyes?
Who dribbles his food . . . . . and makes no reply.
When you say in a loud voice . . . . . 'I do wish you'd try!'
Who seems not to notice . . . . . the things that you do.
And forever is losing . . . . . A sock or shoe?
Who, resisting or not . . . . . lets you do as you will,
With bathing and feeding . . . . . The long day to fill?
Is that what you're thinking? . . . . . Is that what you see?
Then open your eyes, nurse . . . . . you're not looking at me.
I'll tell you who I am. . . . . . As I sit here so still,
As I do at your bidding, . . . . . as I eat at your will.
I'm a small child of Ten . . .. . . with a father and mother,
Brothers and sisters . . . . . who love one another.
A young boy of Sixteen . . . . with wings on his feet.
Dreaming that soon now . . . . . a lover he'll meet.
A groom soon at Twenty . . . . . my heart gives a leap.
Remembering, the vows . . . . . that I promised to keep.
At Twenty-Five, now . . . . . I have young of my own.
Who need me to guide . . . . . And a secure happy home.
A man of Thirty . . . . . My young now grown fast,
Bound to each other . . . .. . With ties that should last.
At Forty, my young sons . . . . . have grown and are gone,
But my woman's beside me . . . .. . to see I don't mourn.
At Fifty, once more, babies play 'round my knee,
Again, we know children . . . . . My loved one and me.
Dark days are upon me . . . . . my wife is now dead.
I look at the future . . . . . shudder with dread.
For my young are all rearing . . . . . young of their own.
And I think of the years . . . . . and the love that I've known.
I'm now an old man . . . . . and nature is cruel.
Tis jest to make old age . . . . . look like a fool.
The body, it crumbles . . . . . grace and vigor, depart.
There is now a stone . . . . where I once had a heart.
But inside this old carcass . . . . . a young guy still dwells,
And now and again . . . . . my battered heart swells.
I remember the joys . . . . . I remember the pain.
And I'm loving and living . . . . . life over again.
I think of the years, all too few . . . . . gone too fast.
And accept the stark fact . . . . that nothing can last.
So open your eyes, people . . . . . open and see.
Not a crabby old man . . . Look closer . . . see ME!!
Friday, July 9, 2010
Friday evening
Just got home and Deb is whipped!
Deb is now Neutropenic.
Wikepedia says:
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).
Neutropenia can be acute or chronic depending on the duration of the illness. A patient has chronic neutropenia if the condition lasts for longer than 3 months. It is sometimes used interchangeably with the term leukopenia ("deficit in the number of white blood cells"), as neutrophils are the most abundant leukocytes, but neutropenia is more properly considered a subset of leukopenia as a whole.
There are numerous causes of neutropenia that can roughly be divided between either problems in the production of the cells by the bone marrow and destruction of the cells elsewhere in the body. Treatment depends on the nature of the cause, and emphasis is placed on the prevention and treatment of infection.
I gave Deb a bowl of watermelon. That seems to appeal to her. I also had to hook up an infuser of magnesium into her port.
We shared a room with a couple we had not met before. They have been coming here for over two years. The caregiver was extremely knowledgeable about the meds and cancer treatments.
Have a great weekend. Ours will be more of the same with Deb declining further for the
next week or so.
Our ears are listening for a call from Jon and Amanda concerning a certain expected granddaughter who could come a-calling at any time now!
Today-July 9th is my late brother Terry's,my Uncle Kenneth's, and my sister Kay's daughter Amberley's son Noah's 11th birthday. How's that for a mouthful! Probably should have consulted an editor for such a phrase!
What are you doing this weekend? We'd love to hear about it! It's very quiet and boring out here! This is just a few steps above prison life!
Blessings all!
Vern
Deb is now Neutropenic.
Wikepedia says:
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).
Neutropenia can be acute or chronic depending on the duration of the illness. A patient has chronic neutropenia if the condition lasts for longer than 3 months. It is sometimes used interchangeably with the term leukopenia ("deficit in the number of white blood cells"), as neutrophils are the most abundant leukocytes, but neutropenia is more properly considered a subset of leukopenia as a whole.
There are numerous causes of neutropenia that can roughly be divided between either problems in the production of the cells by the bone marrow and destruction of the cells elsewhere in the body. Treatment depends on the nature of the cause, and emphasis is placed on the prevention and treatment of infection.
I gave Deb a bowl of watermelon. That seems to appeal to her. I also had to hook up an infuser of magnesium into her port.
We shared a room with a couple we had not met before. They have been coming here for over two years. The caregiver was extremely knowledgeable about the meds and cancer treatments.
Have a great weekend. Ours will be more of the same with Deb declining further for the
next week or so.
Our ears are listening for a call from Jon and Amanda concerning a certain expected granddaughter who could come a-calling at any time now!
Today-July 9th is my late brother Terry's,my Uncle Kenneth's, and my sister Kay's daughter Amberley's son Noah's 11th birthday. How's that for a mouthful! Probably should have consulted an editor for such a phrase!
What are you doing this weekend? We'd love to hear about it! It's very quiet and boring out here! This is just a few steps above prison life!
Blessings all!
Vern
Friday Morning: bribery in the kitchen
It's raining in Little Rock. At 8 am we went to the assigned room here at our living quarters to get the day's labs drawn. This saves us about 1.5 hrs wait at the clinic. Deb is getting very weak. After I got her back to the room, all she would eat was a few slices of peeled apple. Her appetite has gone south. She went to bed.
I queried her about food cravings and made my list. The choices are limited because of her vulnerability. The hotel shuttle drove me to the local Kroger where I scoured the place for goodies that might tantalize Deb's palate. I just returned and put things away. Deb is still asleep. She has to be in the clinic at 1 pm today. I think she will have to have a transfusion because her numbers were marginal and she is so weak today.
The clinic was so crowded yesterday that some patients elected to take their chemo in the waiting area. The new hospital clinic opens in about 3 weeks and then there will be plenty of room. I understand that the myeloma clinic presently can only tend 150 here at a time. The new digs should allow for much growth.
It's a shame there are so many cases of myeloma out there. But what a blessing to have such a resource available. We are so grateful!
Thanks for your prayers and support!
Vern
I queried her about food cravings and made my list. The choices are limited because of her vulnerability. The hotel shuttle drove me to the local Kroger where I scoured the place for goodies that might tantalize Deb's palate. I just returned and put things away. Deb is still asleep. She has to be in the clinic at 1 pm today. I think she will have to have a transfusion because her numbers were marginal and she is so weak today.
The clinic was so crowded yesterday that some patients elected to take their chemo in the waiting area. The new hospital clinic opens in about 3 weeks and then there will be plenty of room. I understand that the myeloma clinic presently can only tend 150 here at a time. The new digs should allow for much growth.
It's a shame there are so many cases of myeloma out there. But what a blessing to have such a resource available. We are so grateful!
Thanks for your prayers and support!
Vern
Thursday, July 8, 2010
Thursday afternoon
Just got back from the clinic. Deb is fuzzy-brained and tired. Her BP was low so they gave her an IV. They also gave her some other meds via IV. Before I could bring her home they issued us a 'emergency' infuser that I can hook up if she gets a fever in the evening. This hospital tries to equip us with training and the stuff needed to be outpatients (think-cheaper and more family-friendly).
Because her Potassium was low today,they sent an infuser for that which takes 5 hours to enter Deb's body thru the port. Remember my comments last month about being fearful of using the ports? It's beginning to be the new normal for us.
Israel was in the chair next to us. He told me that he thinks he made a bad mistake by insisting he stay here and complete the treatments without going home for a break.He said we did the right thing to take a break. I agree!!!! By the way, he was born in 1938. Going home for 2.5 weeks was one of the best feelings of life. Our modest home felt like Buckingham Palace.
Another lady patient was really craving her favorite restaurant. She couldn't find anyone who knew if/where it was. I pulled out Deb's iPad, typed in the name and 'bong',there it was. Wonderful invention!
Blessings all!
Vern
Because her Potassium was low today,they sent an infuser for that which takes 5 hours to enter Deb's body thru the port. Remember my comments last month about being fearful of using the ports? It's beginning to be the new normal for us.
Israel was in the chair next to us. He told me that he thinks he made a bad mistake by insisting he stay here and complete the treatments without going home for a break.He said we did the right thing to take a break. I agree!!!! By the way, he was born in 1938. Going home for 2.5 weeks was one of the best feelings of life. Our modest home felt like Buckingham Palace.
Another lady patient was really craving her favorite restaurant. She couldn't find anyone who knew if/where it was. I pulled out Deb's iPad, typed in the name and 'bong',there it was. Wonderful invention!
Blessings all!
Vern
Wednesday, July 7, 2010
The Master Plan
I have in my hand a copy of our 'master plan of treatment.' It's written in medical code. The weeks will vary based on Deb's recovery and is certainly not in stone. But, it is least a plan. We enter phase 3 as of now I think.
It has six phases.
1-Induction Phase
2-Transplant-1 (3-8 weeks post induction)
3-Inter-transplant #1 (6-12 weeks post transplant 1)
4-Inter-transplant #2 (6-12 weeks post inter-transplant 1)
5-transplant-2 (6-12 weeks post inter-transplant 2)
6-Maintenance year 1 (4-12 weeks transplant 2)
-Maintenance year 2 and 3
Each phase has the meds listed
It has six phases.
1-Induction Phase
2-Transplant-1 (3-8 weeks post induction)
3-Inter-transplant #1 (6-12 weeks post transplant 1)
4-Inter-transplant #2 (6-12 weeks post inter-transplant 1)
5-transplant-2 (6-12 weeks post inter-transplant 2)
6-Maintenance year 1 (4-12 weeks transplant 2)
-Maintenance year 2 and 3
Each phase has the meds listed
Deb's delicate hand in mine
Holding Deb's hand tonight provoked an emotional response in me that I will share.
Tonight was a quiet evening together after a momentous occasion in our life: a stem cell transplant.The stem cell transplant was not especially technologically overwhelming when it finally happened; in fact, it was fairly simple and quick, but it represents life to us.
If it takes, and if the protocols work as we hope and pray, then years will be added to Deb's life and much pain and family distress avoided, or at least postponed until a more acceptable and appropriate age.
Being with Deb constantly may not allow me the same reaction that someone who only periodically sees Deb might have, but it certainly gives me a unique perspective.
Since I've been holding that sweet hand for nigh unto 36 years, it is precious to me. It has prepared many meals, stitched many seams, comforted and clothed our children and me, and helped many. But holding Deb's hand tonight was a very emotional thing for me tonight as it is so delicate and vulnerable, as is her whole physical being. I feel a strong urge to protect her and to shelter her from harm. Losing >40 pounds and >4 inches as well as her beautiful and always natural hair magnifies her delicate personhood and the suffering and changes she has endured and that I have been witness to.
This cancer thing is evil. So many around us suffer from it. Families are greatly affected and changed by it. The fight outlined in the plan I posted is not simple nor are the results guaranteed.
We are fearfully and wonderfully made. Our bodies are so complex. Only our maker and designer's touch can heal and whether or not he uses medicine or a direct miracle, or chooses not to heal at all is his perogative.
So we pray. Exercise faith. Endure. Wait.Hope.Trust.Comfort.Protect.Worship.
Regardless of the outcome.
We hold hands.
Vern
Flowers waiting when we got home
The flower angels had been here and these were waiting for Deb. Unfortunately, due the diminishing immune system, we had to put them in the lobby because Deb has to avoid all sorts of sources of potential infections until her white blood count rebounds in a week or so.
Thanks, flower angels!
Transplant completed-now under observation
If all goes perfectly, we should go home 15 days from today for 2-3 weeks, then return for chemo, then second transplant.
Sent from my iPhone
Stem cells just arrived
Weds am
Deb is moving slowly but she is moving! She took her morning meds and ate a modest breakfast. The chemo has really begun to kick in. Deb is very nauseous.
The stem cell transplant is at 10:30am and is not much more than a transfusion. However, the magic has been done behind the scenes in using the human growth hormones to super-stimulate Deb's body into producing beaucoup stem cells that flood her blood so they can be collected for use in this infusion.
More later...
Tuesday, July 6, 2010
Tuesday evening
After Deb's chemo this morning we were to get a take home infuser-a portable baby-bottle looking pressurized bottle that attaches to Deb's port.It never showed up in spite of numerous searches and a man sent to look for it. We waited and waited until I sensed that Deb had endured all she needed to, so I told the nurses that I was taking her home to feed her and get her in bed for a nap and then I'd be back to pick up the infuser. Sometimes a caregiver has to make things happen.
I brought her home and got her settled then went back. Finally the nurse found out that the administrator had never ordered it at all. Deb would have spent the day there!
Then I had to go to the hospital pharmacy. Last week angel-pharmacist Carla worked an entire day with all levels of Deb's insurance company trying to get Deb's essential pain killer refilled. We finally got enough pain meds to get us thru the weekend. So, in consult with her, I went to see Dr. Nair's angel-nurse Gina and she got a modified prescription that angel-pharmacist Carla thought would get past the hurdles the insurance company was throwing up. When I finally got the hand-signed script to Carla, she called it in and they immediately approved the pain killer! Way to go team! Carla went the extra ten miles to do what was right for Deb. Thanks!
I had to get refills of day-to-day meds as well and also supplies to use with Deb's port since I'm having to give her at-home infusions thru the port. It is still a very serious scary thing to mess with tubes connected almost into one's heart. But, it is much easier to do after practice.
So, late afternoon I was finally done and brought a large paper grocery bag of meds back. Deb was still resting so I made her some fresh Jello and tea. She ate one small bite of Jello and a tiny slice of peeled apple for supper. She is so tired and sleepy. Right now she is in her recliner and napping again. The chemo is really kicking in.
Nine am in the morning she gets labs, then at 10:30 the stem cell transplant.
My personal life right now is somewhat boring and I spend most of the evening browsing the internet and planning home improvements and airplane mods I'd like to do if I were home and able. I ordered a few study DVD's yesterday so I can renew my Flight Instructor Certificate by Sept. Have to do this every two years. Last night I found a video of the first guitar song I ever loved at about age 5 : Wildwood Flower by the Carter family performed by the family matriarch Mother Maybelle. It's also the first song I learned to play on an old guitar my grandfather bought from a soldier headed to the front in WWII. It sounded just like the old 78 RPM record I listened to with my grandmother back in the early '50's.
Makes me feel like a senior citizen when I start dwelling on the good old days so much.
How about you?
Vern
I brought her home and got her settled then went back. Finally the nurse found out that the administrator had never ordered it at all. Deb would have spent the day there!
Then I had to go to the hospital pharmacy. Last week angel-pharmacist Carla worked an entire day with all levels of Deb's insurance company trying to get Deb's essential pain killer refilled. We finally got enough pain meds to get us thru the weekend. So, in consult with her, I went to see Dr. Nair's angel-nurse Gina and she got a modified prescription that angel-pharmacist Carla thought would get past the hurdles the insurance company was throwing up. When I finally got the hand-signed script to Carla, she called it in and they immediately approved the pain killer! Way to go team! Carla went the extra ten miles to do what was right for Deb. Thanks!
I had to get refills of day-to-day meds as well and also supplies to use with Deb's port since I'm having to give her at-home infusions thru the port. It is still a very serious scary thing to mess with tubes connected almost into one's heart. But, it is much easier to do after practice.
So, late afternoon I was finally done and brought a large paper grocery bag of meds back. Deb was still resting so I made her some fresh Jello and tea. She ate one small bite of Jello and a tiny slice of peeled apple for supper. She is so tired and sleepy. Right now she is in her recliner and napping again. The chemo is really kicking in.
Nine am in the morning she gets labs, then at 10:30 the stem cell transplant.
My personal life right now is somewhat boring and I spend most of the evening browsing the internet and planning home improvements and airplane mods I'd like to do if I were home and able. I ordered a few study DVD's yesterday so I can renew my Flight Instructor Certificate by Sept. Have to do this every two years. Last night I found a video of the first guitar song I ever loved at about age 5 : Wildwood Flower by the Carter family performed by the family matriarch Mother Maybelle. It's also the first song I learned to play on an old guitar my grandfather bought from a soldier headed to the front in WWII. It sounded just like the old 78 RPM record I listened to with my grandmother back in the early '50's.
Makes me feel like a senior citizen when I start dwelling on the good old days so much.
How about you?
Vern
Tuesday am
You can tell it's the day after a holiday by all the increased activity and personnel around the hospital.
Enjoyed the trip in this morning on the hotel van because the Markham House maintenance engineer was on the van working on the ac.He and I talked Air Force. He was in aircraft maintenance during the VN war and served mostly in Thailand in pressurization and life support. He was familiar with my old squadron from NKP ,Thailand, the 23d TASS flying OV-10 Broncos. When the unit left Viet Nam and came to Austin,Tx where I joined the unit.
We are in a room now with an older couple from Deb's childhood home and family homestead,Adamsville,Tn. That is also where Buford Pusser the Walking Tall sheriff was from.Deb knew him from childhood.
Deb is finishing her chemo.24 hours from now she gets her stem cell transplant. Although it is a huge important potentially life saving event to us,the nurse says it will be anti-climatic since it mostly resembles a transfusion to us. In the coming days the chemo will really kicknin and Deb's immune system will be erased, then rebuilt.So, the next one-three weeks will be challenging to see how Deb reacts to the chemo as well as the stem cells.
Thanks for your support. Amanda is in the last days before her baby comes and we would love to be back home for the arrival.
Vern
Enjoyed the trip in this morning on the hotel van because the Markham House maintenance engineer was on the van working on the ac.He and I talked Air Force. He was in aircraft maintenance during the VN war and served mostly in Thailand in pressurization and life support. He was familiar with my old squadron from NKP ,Thailand, the 23d TASS flying OV-10 Broncos. When the unit left Viet Nam and came to Austin,Tx where I joined the unit.
We are in a room now with an older couple from Deb's childhood home and family homestead,Adamsville,Tn. That is also where Buford Pusser the Walking Tall sheriff was from.Deb knew him from childhood.
Deb is finishing her chemo.24 hours from now she gets her stem cell transplant. Although it is a huge important potentially life saving event to us,the nurse says it will be anti-climatic since it mostly resembles a transfusion to us. In the coming days the chemo will really kicknin and Deb's immune system will be erased, then rebuilt.So, the next one-three weeks will be challenging to see how Deb reacts to the chemo as well as the stem cells.
Thanks for your support. Amanda is in the last days before her baby comes and we would love to be back home for the arrival.
Vern
Monday, July 5, 2010
Deb and Israel sharing a chemo room this morning
Met another aviatior from NW Ark who owns a V tail Bonanza. He has been under the care here for almost 20 years. After his first treatment under Dr Barlogie, they had seven normal years before any more treatment was needed. Surely it has gotten better since they began we pray!
Bubba and Ima Jo are in the next room over and looking good.
Deb is eating cup after cip of ice to counteract the chemo affrcts on her mouth.
Sunday, July 4, 2010
Chemo meds
Just in case you are curious:
The Chemo meds
+++++++++++++++
Velcade
Dexamethasone
Revlimid
Melphalan
Cyclophosphamide
Etoposide
Cisplatin
Doxorubicin
Ondansetron
Lovenox
Neuogen
Levofloxacin
Fluconazole
Acyclovir
Pantoprazole
There are 16 more that we take at home.
The Stem Cell infusion is on July 7.
f
The Chemo meds
+++++++++++++++
Velcade
Dexamethasone
Revlimid
Melphalan
Cyclophosphamide
Etoposide
Cisplatin
Doxorubicin
Ondansetron
Lovenox
Neuogen
Levofloxacin
Fluconazole
Acyclovir
Pantoprazole
There are 16 more that we take at home.
The Stem Cell infusion is on July 7.
f
View out our hotel window-golfers across the street
Deb presents Antoinne a gift-Hope Beads
Deb makes these and has been gifting special angels.
Here is the text:
This is a special gift for you from Deb.
Deb and friends have made these Hope Beads as an act of love for you.May God bless you on your life journey wherever it may lead.
The blessing is found in the meaning of the components:
Bee charm: meaning of the name Deborah. Bees are industrious, proactive creatures, making plans and provision for the future.
Black bone,white bone(fish vertebrae)-strength in the face of the unknown
Amber-God is present
Red coral-blood of Jesus
Turquoise-spiritual journey for wisdom
Green cording-green is the universal symbol of life
Happy Fourth everyone!
We are in 7C getting labs and chemo. Another couple from the DC area is sharing the room with us. She was a high school music teacher. He had been a member of the USMC band, 'Sousa's own.' Their son is now a professional percussionist.
How cool to be in the room with someone who played Sousa's music on the fourth of July!!!!
Deb has had the shakes and her cast iron tummy let her down last night. First time I remember her tossing cookies in almost 36 years of marriage. But all in all,the intense chemo has not been as severe as I heard others say. The Lord has been merciful.
At the moment, she just is getting a painful shot in her tummy. Think squished up face.
Hope everyone enjoys their holiday activities!
Vern
How cool to be in the room with someone who played Sousa's music on the fourth of July!!!!
Deb has had the shakes and her cast iron tummy let her down last night. First time I remember her tossing cookies in almost 36 years of marriage. But all in all,the intense chemo has not been as severe as I heard others say. The Lord has been merciful.
At the moment, she just is getting a painful shot in her tummy. Think squished up face.
Hope everyone enjoys their holiday activities!
Vern
Saturday, July 3, 2010
11:00 am in 7C and all's well
We arrived at 9 am and were assigned our private chemo room and nurse by 10. Deb still had bag chemo to complete from home and then the nurse started ordering the formulation of her strong in- hospital chemo. The nurse explained the short lifespan of various chemo mixes: some as short as 90 minutes for a bag costing thousands of dollars per bag. They are experts at giving any-nausea drugs here and we so appreciate the research and dedication to making this process more bearable.
Our nurse,also a Debbie, started working in the clinic the same month her brother began treatments here. Therefore, she has a even greater grasp of how this cancer and treatment affects a family.
Deb's labs came back for today and they look good. We know they will change as the chemo bites in.Deb will receive very strong cocktails of chemo that will take her to the verge of death and back.
This morning I was thinking back over all the fourth of July family events of my lifetime. When my grandparents were alive we had many such events which have become less common over the years. I have so many found memories of those hot July days, eating family meals together, sometimes at the lake with many family members now gone. Those are special memories. We even have one family memory of our three kids on the banks of the Arkanasa river watching fireworks from 25 years ago when I was going thru C-130 school at Little Rock,AFB.
Before we left the Markham house this morning we had a short Skype video conference with Katka,Trey, and Evelyn. It was so good to see them! Evelyn has grown so much!
The nurse has Deb eating ice constantly because one of the chemise causes bad mouth sores.
Enjoy your holiday weekend!
Blessings all!
Vern
Our nurse,also a Debbie, started working in the clinic the same month her brother began treatments here. Therefore, she has a even greater grasp of how this cancer and treatment affects a family.
Deb's labs came back for today and they look good. We know they will change as the chemo bites in.Deb will receive very strong cocktails of chemo that will take her to the verge of death and back.
This morning I was thinking back over all the fourth of July family events of my lifetime. When my grandparents were alive we had many such events which have become less common over the years. I have so many found memories of those hot July days, eating family meals together, sometimes at the lake with many family members now gone. Those are special memories. We even have one family memory of our three kids on the banks of the Arkanasa river watching fireworks from 25 years ago when I was going thru C-130 school at Little Rock,AFB.
Before we left the Markham house this morning we had a short Skype video conference with Katka,Trey, and Evelyn. It was so good to see them! Evelyn has grown so much!
The nurse has Deb eating ice constantly because one of the chemise causes bad mouth sores.
Enjoy your holiday weekend!
Blessings all!
Vern
Friday, July 2, 2010
New geography-now in '7C'
This is a new location and staff for Deb.After the labs confirmed her ability to endure,she got hooked up to various iv's and is receiving all manner of chemo.We also got hooked up to a portable electric pump bag that dispenses chemo all night until we come back to C7 tomorrow.We will spend the next four days here/home,then rest a day,then the stem cell infusion. When her body recovers and numbers are good, we go home to Ptc for a break.
Charting out med schedule
Vern's duty is to give meds as directed. Some vary in quantity or sequence. It's downright confusing at times. Many meds have 2-4 common names.
We start four days of home chemo tonight as well as IV chemo in a few hours.
Pain killers are not on the above charts since they are on an even different schedule. Some are 'as needed.'
Then there is the poor insurance company who will not authorize refills when needed because their records show we have plenty of pills left while our pill bottle shows empty. Then throw in the confusion of home pharmacy records vs Arkansas records.
But, praise God there are meds! We are so grateful for them!
Thursday, July 1, 2010
Thursday afternoon
Just saw Dr Nair.Waiting for triple port install,then back to Spine Center to meet with nurse Gena.
Lab report showed good response to chemo.Dr Nair used the term 'near remission' to describe the cancer protein levels.
Today was the first time we have been near a height measuring device so Deb stepped under it to be measured. We have been saying she had lost about two inches but we were wrong.
She has lost four inches of height! No wonder Deb seemed so short!
We just met with the lady doc who is going to install the port and she gave Deb much hope for a gentle procedure. Fear of a harsh doc like the first time has caused Deb much consternation.
Lab report showed good response to chemo.Dr Nair used the term 'near remission' to describe the cancer protein levels.
Today was the first time we have been near a height measuring device so Deb stepped under it to be measured. We have been saying she had lost about two inches but we were wrong.
She has lost four inches of height! No wonder Deb seemed so short!
We just met with the lady doc who is going to install the port and she gave Deb much hope for a gentle procedure. Fear of a harsh doc like the first time has caused Deb much consternation.
Just talked with Israel
We are in his old room. He's moved into a two bedroom with a full time caregiver. He seemed very happy to see me. He had a stem cell transplant yesterday.
Sent from my iPhone
Pray Please
Good Morning, Dear Ones,
Today about 1:30 we see Dr. Nair to get the "roadmap" for the next session. Immediately after meeting with him we go to have the Cook Triple inserted in my neck and chest. Chemo therapy begins on Friday and will continue daily for 4 or 5 days (Dr. Nair will clarify the time schedule this afternoon) and then I will have the stem cell transplant.
This morning I awoke with anxiety. Remembering what Dr. Bergstrom had said I take some medication to help. I may have to take even more. The anxiety affects my breathing and swallowing. I do not like it!
I am so hopeful that I will be able to get through this session without a trip to the hospital. Amanda and Jon's baby Eliana is due July 19 and Trey (without Katka and Evelyn) will be home August 12 -17. Each of these are major life events for me. I am so hopeful that I will be doing well so we can enjoy both events.
Since I cannot skip this treatment, I am appealing to you to continue to pray that I will respond quickly and well. Thank you for your faithfulness to pray for us and our family. We are very grateful.
Love to all.
Deb
Today about 1:30 we see Dr. Nair to get the "roadmap" for the next session. Immediately after meeting with him we go to have the Cook Triple inserted in my neck and chest. Chemo therapy begins on Friday and will continue daily for 4 or 5 days (Dr. Nair will clarify the time schedule this afternoon) and then I will have the stem cell transplant.
This morning I awoke with anxiety. Remembering what Dr. Bergstrom had said I take some medication to help. I may have to take even more. The anxiety affects my breathing and swallowing. I do not like it!
I am so hopeful that I will be able to get through this session without a trip to the hospital. Amanda and Jon's baby Eliana is due July 19 and Trey (without Katka and Evelyn) will be home August 12 -17. Each of these are major life events for me. I am so hopeful that I will be doing well so we can enjoy both events.
Since I cannot skip this treatment, I am appealing to you to continue to pray that I will respond quickly and well. Thank you for your faithfulness to pray for us and our family. We are very grateful.
Love to all.
Deb
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