Deb is also having imaginations and mental misunderstandings. Last night after dozing for a while, she got up and said she was getting dressed. I thought she was putting on PJs. A few minutes later she walked in with her go-to-clinic clothes on and chided me for not being ready. I told her it was bedtime, not clinic time and she was bewildered. We had been warned that this might happened.
It took a while to get to clinic this morning. Deb's Woozy Meter was up close to 9. She needed lots of help. Labs eventually showed she needed platelets and they were ordered. After waiting a few hours we found out that they would not be available until Thursday.
I had to make a pharmacy and lunch run. I bumped into the MD who had told me he was the next Killer Cell candidate. He asked all about how Deb was doing then told me he had been un-enrolled in the program. I felt so bad for him!
When we got back to the condo, the HVAC repairman was waiting, parts in hand. While he completed our repairs and gave us heat, Deb was getting ready for a nap. She had more chills and fevers.
She had not had eaten a good meal so I fixed mashed 'taters, turkey and gravy, baby lima beans, and french toast. She ate about 1/3 of normal servings.
While I was doing completion paperwork outside with the HVAC repairman, the lab called Deb with a report that it appeared that the Natural Killer cells in her body were multiplying without any outside stimulation! What good news!
Tomorrow we see Dr van Rhee at 11:30. We can't wait to get his take on what is happening. Tomorrows update will hopefully be very encouraging. See you then!
Blessings!
White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day White Count Platelets CRP
0 0.04 29 12.8
1 0.07 15 77.0
2 0.03 42 140.3
3 0.07 27 144.1
4 0.23 52 206.0
5 1.21 33 168.2
6 2.32 26 214.0
Monday, October 8, 2012
Day +4- Surprise Visit with Dr van Rhee + Dogs
Deb started out about a 7 on the Woozy Meter but by nightfall when we left clinic was riding in a wheel chair with about an 8.5 going for her. That's the point where unassisted walking results in bumping into things and slipping. It's unsafe! So, naturally most every step was on my arm.
We were supposed to be in clinic at 07:30 but had a hard time getting out the door. When we went back to our designated treatment room and got hooked up to all the meds promptly, it had all the makings of a short day for Deb. After meds and labs , we left right after lunch.
As I've said in the past, discussing lunch options and planning a meal is about as exciting a thing as we can handle in our current condition. While on the way home Deb wrote down needed supplies while I drove and discussed what we already had. Deb was so hungry she was salivating. Just as we were about back at the condo, my phone rang and it was APN Peggy telling us that Dr van Rhee had returned from Holland and wanted to examine Deb in spite of his jet lag. So with protests from a starving lady, I did a turn and headed back to clinic. We went back to the same room and APNs, nurses, Dr van Rhee and his shadowing doc from Formosa walked in. That made for a cozy room! Dr van Rhee did a short physical check, then looked Deb over and checked heart and lungs and pulse. He reviewed her labs and made some adjustments in meds. He said she was doing great!
As you see from the numbers below, Deb's CRP has been rising, indicating something is making her sick. It could be the meds and infused cells, or it could be an infection in one of the 4 ports she has, or something unknown. It could be days of receiving blood products without steroids. Blood samples were drawn from each port to eliminate that. Other tests including another PET scan are upcoming. There will be a painful bone marrow test in the morning.
One thing is certain: No one could ever be more carefully monitored! They are watching this gal! For that we are so grateful!
So, a new very strong anti-fungal was added along with a new anti-biotic. Since it was a new drug in the IV, it was set to infuse the 1/2 coffee cup quantity over 2 hours. Deb was comfy when it started but soon she developed chills, high fever, and miseries. I kept covering her up trying to get her warm. After watching this for a while, I went to get the nurse. She slowed down the infusion and Deb got some relief. But for most of the afternoon Deb was a pitiful pup!
While in the room, we over heard an old patient visiting who had been treated several years back going nurse to nurse praising them for their care in his treatment. He was so thankful for their help! It really is like being with your closest friends who are so gifted in mercy and compassion as well as their tremendous medical skills.
On another note, since UAMS is such a wonderful cancer research campus, there is another Doc here who is researching Ovarian Cancers. According to his article, there is no test for ovarian cancer. It is easily treated if caught early, but is usually diagnosed very late in its cycle. Dr Alexander Burnett has trained five dogs of various breeds to sniff out ovarian cancer by training them to recognize the smells from tumors and urine from ovarian cancer patients. If this works out, many lives could be saved! Cool huh! Go pet a dog, get sniffed, get diag-nosed {pun intended}.
Today in clinic we found out that one of our favorite nurses had taken a few flying lessons, as had Deb. We also had a note yesterday from a lady classmate who actually finished her private pilot license and participated in the Powder Puff derby, an air race for women pilots that Amelia Earhart had also participated in. Deb does not have a pilot's license but she is an FAA ground school instructor and has the license to prove it!
After we got home and I fed the starving lady, we checked the mailbox and found a dozen or so cards which we much appreciate! As Deb lay in bed, I handed her each one which she read out loud. She was really touched by your kind remarks and prayers.
+++++++++++++++++++++++++++++++++++++++++++++
I do not have the expertise to evaluate these resources. They are offered to increase knowledge about the NK Cells. Vern
There is a scientific article of unknown quality at :
http://en.wikipedia.org/wiki/Natural_killer_cell
There is a graphic explanation on You Tube that helps get an idea of the process NK Cells use.
http://www.youtube.com/watch?v=HNP1EAYLhOs
Medical Article at : http://bloodjournal.hematologylibrary.org/content/112/3/461.long
+++++++++++++++++++++++++++++++++++++++++++++
White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day White Count Platelets CRP
0 0.04 29 12.8
1 0.07 15 77.0
2 0.03 42 140.3
3 0.07 27 144.1
4 0.23 52 206.0
Sunday, October 7, 2012
Day +3-Sunday-Exciting Conversation
There are many unsung heros who help Deb. Today we met two of them. Joshua and Susann. Susann is the head of Dr van Rhee's 9th floor lab and Joshua works for her as a tech. As you know, Deb is in an experimental medical test and the labs are a big part of gathering data. Today our labs took longer than normal so Joshua came downstairs to Deb's room to find out what was going on. There was a problem with the tubes used to collect blood, so he called his boss for advice. She came down. We got to meet them both and ask questions. Note that it is a Sunday but they were both here to get Deb's tests done. Thanks Lab Angels!
So, here's some unofficial encouraging news: Susann says it will be day 5 before there is an absolute measurable result, but in her opinion, Amanda's cells are out-performing number five's...which had Dr van Rhee excited. So, we hope she is correct but will know for sure in a few days!
Since I was president of the HS Science Club, and later a chemistry major in college, I asked if I could possibly get a lab tour. Susann said sure, how about right then? Deb jumped in as said 'No,wait till I can go too!' So, that's the plan!
After they left, Deb and I rejoiced at our good news and having met more members of the team.
Deb needs both platelets and Red blood. Only one blood product per day without certain meds, so platelets today, reds tomorrow!
We had enjoyable chats with several classmates. We enjoy those conversations so much as we trade experiences and status updates.
Deb was a 7.5 on the Woozy meter, so she was glad to have assistance getting home and in bed for a nap. She is not able to have any steroids, so the meds normally used to help overcome symptoms are not available.
Tomorrow starts again at 07:30 am. Tuesday is a bone marrow test. Thursday we see Dr van Rhee.
So, it should be an informative and interesting week.
Deb was starving by the time we got home. I made her a special fruit salad. Deb is so neutrapenic, she eats only food I prepare. So, fresh fruits and veggies are only what can be peeled and washed in antiseptic soap first. I peeled a fresh apple, a gourmet pear, and a fresh banana. I chopped them into small cubes. Then I mixed a small amount of dressings-2 teaspoons of mayo and one of honey. She loved it! Raisins and nuts would have been good also but they could not be used because of no peeling or washing!
White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day White Count Platelets CRP
0 0.04 29 12.8
1 0.07 15 77.0
2 0.03 42 140.3
3 0.07 27 144.1
++++++++++++++++++++++++++
6:30 am Mon update-Fevers all night up to 102
Saturday, October 6, 2012
Day +2-Happy 63d Anniversary!
We had an interesting visit with the patient who is an MD who has been selected as Natural Killer Cell Test number 7. His case is significantly different than Debs. He will be getting natural killer cells with no chemo to prepare the way. I guess that's why they call this medical tests! It's interesting to have a classmate who is an MD. He was taking his own pulse today and, of course his level of understanding about what's going on here is much higher than ours! Sometimes ignorance could make sleep easier, I presume. A number of classmates are extremely interested in Deb's progress because they may be following in her footsteps soon.
A cold front rushed through Little Rock with temps dropping into the 40's with heavy rain, thunder, and lightning. Keeping Deb warm and dry is numero uno priority. Last night the temp in the condo was too cool so after we got back from clinic, Mr Fixit got a ladder and climbed into the attic to check out the HVAC system. Heat inop! We thought so. So, calls to the warranty company, then to the designated contractor. Multiple calls, no answers...looks like a weekday operation only. But, Ms Deb is cold today! So, a trip to Sams was made after getting Deb into a cozy pile of blankets in her bed. Several 1500 watt portable electric heaters and a couple of hoodies brought comfort back to our nest. The crockpot of chili was very appropriate and warming. If I hadn't forgotten the onion, it would have been better tasting.
This evening Deb is watching football in her chair and enjoying chili. She has a constant low grade fever and is getting progressively more woozy.
The Gourmet Pear Angel dropped by. Thanks, Pear Angels!
The headline says Happy 63d Anniversary! That would be Vern's parents who reside in Morrow, Ga in their home of many years. Not many children get to congratulate parents for 63 years together. I'm so glad I get to. Congratulations Mom and Dad!
_____________________________________________________________________
White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day White Count Platelets CRP
0 0.04 29 12.8
1 0.07 15 77.0
2 0.03 42 140.3
Blessings!
Friday, October 5, 2012
Day +1-Baseline Stats
Classmates in waiting
>Last night Deb had low-grade fever and sleeplessness. She was obviously a 5.5 on the Woozy meter
>Meds used previously to help get Deb's immune system/white blood count up with other chemo protocols are not allowed on this experimental protocol. Growth Factor shots are the most important normally. They 'kick-start' the immune system. But not in this case. Deb's body has to recover on it's own. Although Deb is number six of the 30 allowed test subjects, she is the first to get a donor's cells that have never been frozen or put into storage. These are called 'active' cells. Deb is number one in the world ever! Theoretically, this will give the very best results. We'll see!
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| Deb was freezing at times, so she got the Mommy-Mummy treatment from Vern |
>Today we showed up the first time at 7:30am. Labs and meds. Deb needed platelets which were not available, so at lunch we returned to the condo until some could be located. About 3 pm they were available, so back to to the clinic until about 6 pm tonight. With our active social life of condo>hospital>condo, Deb and I enjoy playing the game 'What's for Supper?' Today, Deb wanted Turkey Spaghetti. This is a variation of Deb's wonderful Chicken Spaghetti recipe she used to make. I (Vern) cannot eat chicken-it produces crippling gout. That's a rotten deal-not being able to eat your favorite food, but Turkey is just a really big chicken, right?
So, on the way home tonight, we made the list of needed ingredients and stopped by Kroger. Deb extremely neutrapenic, stayed in the car and Vern did the shopping. When Vern came out of the store, there was a hurricane blowing, it seemed! Sideways rain and wind. When we got back to the condo, I went in and got Deb's rain gear so she could get inside reasonably dry. I on the other hand resembled a drowned rat!
Between clinic sessions, Pharmacy angel Carla helped us with a bag of meds. Thanks, Carla!
>Between the two clinic sessions, Deb needed a quiet nap at the condo. After tucking Deb in, I went to several neighborhood garage sales and found two very nice study Bibles at a great price. It always amazes me how such a priceless thing like a Bible is so under-valued by much of society.
After the garage sales, a short trip to the nearby guitar store gave me a needed break. A store manager, PJ, is a part-time pastor who is working there while helping start a new church. He is encouraging to chat with from time to time. I'm always trying out the very nice guitars, far nicer than I'll ever have. While strumming a nice Martin, a elderly gentleman wandered in and sat to listen to my plunking. He picked up another Martin and joined in on some of the old 1930's tunes I love to play. Then he picked out a few tunes. I began to challenge him to play my list of favorites. Man, he was good. We sang a few together and we both had a good time for a half-hour.
He said he was from Pine Bluff, about 40 miles south of Little Rock, and asked where I was from. Atlanta, I said. What brings you here? Wife's cancer treatment at UAMS, I said. Oh, my wife died of cancer and was treated there, he said. She had breast cancer which turned into leukemia. We really loved the staff at UAMS. They were like friends and family. Who is your wife's doctor? Dr van Rhee, I said. Frits? He asked incredulously. He was my wife's doctor! He is wonderful! I agreed!
What a surprise for both of us!
Then the call came that the platelets had been located, so I headed back to the condo to wake up Deb and get her to clinic. She was a 7 on the Woozy meter by then and needed a lot of help.
By the time Deb was back in the bed and being treated this late afternoon, she was whipped! Our friend Lisa, Deb's bud since Jr High, recorded a piano cd of hymns she and Deb have played and sung since the sixties. I love it also! The music is so melodic and peaceful and I often play it for Deb when she is stressed.This afternoon I played it all for Deb. She was calmed very much.
We had a hard day today, but because of the wonderful care Deb gets from the staff here at UAMS, it seems like we spend our time with close friends instead of cold staffers! Thanks to all the UAMS angels!
Tomorrow starts at 07:30am again. Platelets have been ordered for the next few days since they are so hard to locate Deb's needed specs.
Yesterday before the infusion of Natural Killer cells, complete labs were done to establish the pre-infusion baseline. Here are a few things that are key indicators to Deb and me as we know what our day will probably be like.
White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets-a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP-An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day 0-before infusion Day 1
White Count-0.04 0.07
Platelets-29 15
CRP-12.8 77
Blessings!
Thursday, October 4, 2012
Day 0-Liftoff! Procedure complete!
 |
| (L to R) Nadine, Deb, Kristen, Dr Waheeb |
Click Pix to enlarge
Just got the news! Nadine went to bat for us and got a written confirmation that the insurance approved the shots to be given by nurses! Man, is Deb relieved !!! ;)
We were told yesterday to take our time and not to come to clinic before 10:30 am since it takes 5 hours to get the cells ready for infusion. So, we had a leisurely breakfast and quiet morning until the phone rang urging us to get in clinic ASAP for required labs.
So, off with a mighty roar we went into clinic...and waited. Finally, we were given the invite to start the weigh-in process, temps, and blood pressures sitting and standing.
Then, off to our private treatment room. More waiting...
 |
| Emily |
Emily was our nurse today and she had the table laid out with test tubes for all the blood she was to draw. There were 10 yellow tubes for Dr van Rhee's lab, and 5 for the normal labs. Then some big tubes for other tests.
 |
| Number 5 and 6 share tips |
Natural Killer Cell recipient number 5, Dr Laroque, was in for the last time before heading home to Florida for a month. He came over and gave Deb some more tips.
 |
| Cell Delivery |
Then nurse Emily got the message from Dr Fox that she was heading over with the cells. A lab tech came with her. Shortly thereafter Dr Waheeb showed up. They checked out Deb and soon APNs Kristen and Nadine arrived at the party. All in a 10 x 12 foot room with Deb in bed in the middle of it! What a party!
The cells were delivered in a standard lunch box. They look off-white and resemble platelets. They left UAMS bight red.
 |
| The Precious Cells |
Dr Fox reported that Amanda's cells had tested at 99% viability after arriving from Baylor. Before they left Baylor a complete analysis on the cells was done. When the cells arrived here, the tests were repeated and compared. You can never be too careful!
While we were waiting, Dr Waheeb expressed interest in this blog after Kristen mentioned it to her. I had my computer with me and showed her some pages and how the photos enlarge when clicked. She noted the title 'It's all About the Blood' and I commented to her that thousands of years ago the Bible said 'the life is in the blood.' Dr Waheeb was excited and said, 'yes! The life IS in the blood!'
Amanda's collected cells made 248 ml of Killer Cells which were expanded at Baylor to 352 ml of expanded Killer Cells. Dr Waheeb said that there are three locations in the US that can process cells like this.
I asked some layman questions and was told by the doctors that the cells were active and we should expect excellent results! Good enough for the layman in me!
After the cells arrived, a process of checking cell and patient identification was done by the doctors, then the APN's. Then APN Nadine hooked up the bag of precious cells and the infusion began.
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| Nadine prepping Deb for the cells |
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| Nadine monitoring the infusion she has just hooked up to Deb |
So, 2 doctors and 2 APNs watched over Deb as she received the cells. At 1:20 it was completed. No problems!
Deb is asleep because of meds given and must be observed for three hours. She will get the belly shot before we leave. It can produce painful belly and flu-like symptoms. We will be ready tonight for possible fever also.
 |
| Volunteers are so important in helping patients. Thanks! |
Back home, it was pot pies and exhaustion! Monitor temps every 3 hours and show up at 07:30 am tomorrow.
Praise God!
Wednesday, October 3, 2012
Day -1, Prep for tomorrow
Woozy meter registered about a 6.5 this morning with a little mental
confusion and digestive troubles. We settled into our regular room in
the clinic. The HVAC system was confused and although it was 50s-60s
outside, the system kept pouring arctic air on us. We reported it to the
boss nurse who got maintenance on it. As long as the heated blankets
hold out, we'll be OK. Even Vern made himself up like a 'mommy-mummy'
yesterday. Today we had our hats and coats on.
The was some confusion about Deb's sequential position in the Natural Killer Cell Program. We confirmed that she is actually number six in the world! Number seven is just starting processing. It is the doctor patient I reported on last week. He had previously told us he was not able to be a candidate, but now he is. He really wanted to be. Professional courtesy? We do not know. Amanda met number one. We've been visiting with number five. A number of the tests were not so successful because the blood was being frozen after Baylor processed it. One of the test subjects was our friend who died of infections. A pretty exclusive club, no doubt!
Dr Fox,who is in charge of all things blood at UAMS, came for visit. She does not allow pix. Dr Fox asked all about Amanda, whom she got to know while Amanda's cell were being collected. She was also wearing a piece of handmade jewelry similar to what Deb and friends make. That gave Deb and Dr Fox a little more connection. Dr Fox said that she personally would bring the cells over from the lab when they were ready for infusion.
It will take about five hours to prepare the cells tomorrow morning. Therefore, we will not go in until 10:30 am. Then APN Kristen has to do a little physical on behalf of Dr van Rhee.
APN Nadine will oversee the procedure. APN Peggy has been overseeing Deb all week but has other duties tomorrow. Nadine is the nurse who saved Deb's life several years ago. Dr Waheed will be the boss physician, so we'll have 'a cast of thousands!' We are so grateful for each one who cares so much for Deb!
There is still confusion on staff about the painful belly shots-Interlucen-2 that Deb must have for thirteen days. Our Research nurse told us weeks ago that our insurance would not cover giving these and that Vern would have to give them and we were given written procedures for giving them properly. Number 5 was told a similar thing and he reported to us that the cost of these shots was $7,000 if patient-given, but $40,000 if hospital given. We have asked for clarification since a mere $33,000 may be at stake. Normally, any drug provided by the hospital pharmacy is to be given under supervision of the staff here.
Deb's labs showed her white count at 0.18, so she basically has no immune system. The nasty affects of chemo have all shown up. Deb is very listless and sleepy. So, to the best of our knowledge, we are set for tomorrow. The staff has done their job. The meds have performed as expected. So, with faith in the God who has never let us down and who has brought us this far, we look forward to tomorrow and the future and hope it brings.
We covet your prayers that all works as planned. If this Natural Killer Cell protocol test of thirty individuals can be developed and eventually approved for the general population of cancer patients, it could become a breakthrough in cancer treatments!
Praying together!
Blessings!
The was some confusion about Deb's sequential position in the Natural Killer Cell Program. We confirmed that she is actually number six in the world! Number seven is just starting processing. It is the doctor patient I reported on last week. He had previously told us he was not able to be a candidate, but now he is. He really wanted to be. Professional courtesy? We do not know. Amanda met number one. We've been visiting with number five. A number of the tests were not so successful because the blood was being frozen after Baylor processed it. One of the test subjects was our friend who died of infections. A pretty exclusive club, no doubt!
Dr Fox,who is in charge of all things blood at UAMS, came for visit. She does not allow pix. Dr Fox asked all about Amanda, whom she got to know while Amanda's cell were being collected. She was also wearing a piece of handmade jewelry similar to what Deb and friends make. That gave Deb and Dr Fox a little more connection. Dr Fox said that she personally would bring the cells over from the lab when they were ready for infusion.
It will take about five hours to prepare the cells tomorrow morning. Therefore, we will not go in until 10:30 am. Then APN Kristen has to do a little physical on behalf of Dr van Rhee.
APN Nadine will oversee the procedure. APN Peggy has been overseeing Deb all week but has other duties tomorrow. Nadine is the nurse who saved Deb's life several years ago. Dr Waheed will be the boss physician, so we'll have 'a cast of thousands!' We are so grateful for each one who cares so much for Deb!
There is still confusion on staff about the painful belly shots-Interlucen-2 that Deb must have for thirteen days. Our Research nurse told us weeks ago that our insurance would not cover giving these and that Vern would have to give them and we were given written procedures for giving them properly. Number 5 was told a similar thing and he reported to us that the cost of these shots was $7,000 if patient-given, but $40,000 if hospital given. We have asked for clarification since a mere $33,000 may be at stake. Normally, any drug provided by the hospital pharmacy is to be given under supervision of the staff here.
Deb's labs showed her white count at 0.18, so she basically has no immune system. The nasty affects of chemo have all shown up. Deb is very listless and sleepy. So, to the best of our knowledge, we are set for tomorrow. The staff has done their job. The meds have performed as expected. So, with faith in the God who has never let us down and who has brought us this far, we look forward to tomorrow and the future and hope it brings.
We covet your prayers that all works as planned. If this Natural Killer Cell protocol test of thirty individuals can be developed and eventually approved for the general population of cancer patients, it could become a breakthrough in cancer treatments!
Praying together!
Blessings!
Tuesday, October 2, 2012
Day -2 : Woozy meter 5 and increasing
Deb had an 07:30am clinic appointment and a 9:00 am Lung treatment. We
first had to pick up the meds used in the lung treatment from our
Pharmacy Angel Carla. Thanks!
Deb's Lung Angel is always so encouraging and cheerful! Thanks!
Finally we made it into the clinic for labs. Computer problems! The Citrix Farm was having problems! Same exact problem my workplace back home had been having the past few days! Deja vue all over again.
That meant lab results were glacial. Eventually the problems were solved and Deb's labs showed she needed everything. Our nurse Sue Ellen had to hook up extra infuser pumps. She had so many tubes running into Deb that I accused her of cleaning out the supply closet and dumping everything into Deb. Eventually Sue Ellen ran out of supplies and Deb was released.
Before she was, the APN's and nurses made multiple visits to help make sure we are on track for day zero.
Deb needed blood platelets. By the time she came home, she was worn out and needed a long nap.
Deb's appetite has been skimpy lately so I tried cooking something different. Baked taters and au juice, English peas, bread, and a small high-quality steak. pardon the pun, but Deb 'bit' on my fare. She did not eat much but she was able to get some nutrition.
Tomorrow, day -1, is labs only...no chemo! It should be a short restful day.
Amanda's enhanced blood will be brought back from Baylor and begin preparation for infusion on Thursday.
I erred yesterday when I said Bob, number 5, was heading back to Tampa. He was back in clinic today to get some tests. So, I do not know what he is doing after all.
Blessings!
Deb's Lung Angel is always so encouraging and cheerful! Thanks!
Finally we made it into the clinic for labs. Computer problems! The Citrix Farm was having problems! Same exact problem my workplace back home had been having the past few days! Deja vue all over again.
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| Deb crocheting while infusing to the max |
That meant lab results were glacial. Eventually the problems were solved and Deb's labs showed she needed everything. Our nurse Sue Ellen had to hook up extra infuser pumps. She had so many tubes running into Deb that I accused her of cleaning out the supply closet and dumping everything into Deb. Eventually Sue Ellen ran out of supplies and Deb was released.
Before she was, the APN's and nurses made multiple visits to help make sure we are on track for day zero.
 |
| APN Peggy |
 |
| Sue Ellen |
 |
| Double checking the platelets |
Deb needed blood platelets. By the time she came home, she was worn out and needed a long nap.
Deb's appetite has been skimpy lately so I tried cooking something different. Baked taters and au juice, English peas, bread, and a small high-quality steak. pardon the pun, but Deb 'bit' on my fare. She did not eat much but she was able to get some nutrition.
Tomorrow, day -1, is labs only...no chemo! It should be a short restful day.
Amanda's enhanced blood will be brought back from Baylor and begin preparation for infusion on Thursday.
I erred yesterday when I said Bob, number 5, was heading back to Tampa. He was back in clinic today to get some tests. So, I do not know what he is doing after all.
Blessings!
Monday, October 1, 2012
Day -3 : Met NKC # 5
This is Deb visiting with Bob, "number 5", the fifth patient to undergo the Natural Killer Cell procedure. Bob is the one Dr van Rhee ran around excitedly describing 'the highest concentration of Natural Killer Cells he'd ever seen' in his blood after his infusion of the expanded cells.
Bob was on his last post-infusion shot and was so hyperactive he was pacing around the hallway. He couldn't wait to get a few weeks at home in his Tampa home. After he had the shot, Bob left.
Bob came in to chat with Deb several times. He had tips to share with Deb. Bob was a Green Beret in the Viet Nam theater. He feels certain that agent orange exposure caused his myeloma. He recalled following bulldozers through the jungle which had just been defoliated by aerial spraying. He said the dust was flying in that area.
He said the shots Deb must endure for 13 days after infusion are painful and leave large knots in the stomach where they are given. Nurses had previously told us they apply ice before the shot and give it very slowly. He also warned Deb that he had hallucinations and crazy dreams. All in all, we were super encouraged!
For Deb, it was day-3. Thursday she gets the infusion of cells. The difference between Bob and Deb is that Bob received his own cells. Dr van Rhee surmised that Deb should do even better since she had outside cells from Amanda. We'll know soon!
The meds and chemo have kept Deb very drowsy with poor appetite. This chemo is different than most of what she has had in the past. It has not been as bad as anticipated but it's not over either!
When chemo is given, two nurses must approve. They ask Deb name and birthday. They cross check numbers and make sure they have their correct med and person.
Tomorrow Deb has a lung treatment followed by more chemo.
Sunday, September 30, 2012
Day -4: Rainy day + Mr Sam for supper
This morning we had rain showers as we went to clinic. It was 'fall'
cool, so Deb was glad to have her bright-orange go-to-clinic coat.
Weekends are so slow compared to week days. They don't even charge for
parking on weekends and the clinic only had a handful of folks.
Our nurse supervisor, who is an Arkansas Razorback fanatic, had her 'after game' display. It showed a large red Razorback hog laying on his back covered in band aids with hypodermics stuck all over. She enjoys putting her display up every weekend to entertain the patients. If you are not a football fan, Arkansas lost it's coach to a major scandal just before the season opened. Then, the star quarterback got hurt. The season has been a disaster. These folks really are Razorback fans here!
Deb's labs came back with excellent results but she had to have a unit of blood. Kristen, Dr van Rhee's APN assistant, spent a lot of time with Deb. She is making sure everything is going on-track while Dr van Rhee is back in Holland. She said he is planning on participating in Deb's Tuesday pre-infusion meeting via telephone on Tuesday.
Today Deb ministered to a person in great distress. It seems the more Deb is hurting, the more her Godly character shines through. November 23 will be 38 years of marriage for us and I still am being surprised, amazed, and so proud of Deb!
Because of the meds, Deb needed to come straight home after clinic. I asked what she wanted to eat today and while she slept, I made her a supper of pork loin and gravy, home made mashed 'taters, baby lima beans, and a pear salad. Late afternoon she woke up and just as we were beginning to eat, the doorbell rung. It was our condo neighbor, Mr Sam. Wild guess, he is 75-80 and lives alone. He has to use a rolly cart to get around and is always so glad to see us. He lived in Augusta 50 years.
We invited him to join us and he ate a good supper, talking all the while. We enjoyed his company. He was raised in the NE corner of Arkansas near Blytheville. He worked on the Mississippi River on a big barge that had a huge steam powered 87' arm and bucket for scooping sand and gravel out of the river. During WWII years his father worked at Oak Ridge, TN as did Deb's father. While there, Sam's older brother got a contract to repair typewriters and calculating machines. Sam learned the trade assisting his brother. After WWII, Sam enlisted in the Marines. The Korean War was raging by now, but because of his background in typewriters, they gave him more training on teletype technology and he spent the service time in North Carolina. His wife was from between Florence and Darlington, SC. He was able to spend a lot of time with her family. After the Marine stint, he moved to Augusta, Ga and operated a typewriter and business machine store. He built his wife a beauty parlor which is now a bank branch. He is proud of her former shop building.
While in Augusta, the government constructed the Savannah River plant which had over 40,000 employees at one time. Sam would make copies of building and engineering plans for the site and for projects at Los Alamos for the engineers. He had a machine that would make copies up to 24' long. So, Sam got to support Atom Bomb making at Oak Ridge, and Hydrogen bomb making at Augusta. He said that's where he first learned of the dangers of alcoholism. The most skilled employee at making the large prints on a clear plastic would lose it on these precise jobs and go on a multi-day drunk. He apparently could not deal with the pressure. The drunk's wife begged Sam and the staff not to bring him any booze because he would stay drunk as long as he could get whiskey.
Sam used to golf and fish a lot. He had a cabin on a lake in SC and his stories of trot lines and fish baskets reminded me so much of fishing with my grandfather.
After his wife died after 47 years of marriage, he left Augusta and moved to Arkansas where he re-married. His second wife was a school friend that he had grown up with. They had stayed in touch through annual school reunions from their small community school. Mr Sam had also been friends with her late husband. They operated an office supply here in Little Rock until retirement. They sold their big home and moved into the condo for retirement. She died a few years ago.
Mr Sam wanted us to know about his trip next Thursday-Sunday. He and his step-son are flying to Washington, DC for a family wedding.
He held Masters tickets for many years and has kept us in Augusta/Masters magazines.
Tomorrow repeats the past few days and we are staying hunkered down avoiding any source of infection that could hinder Deb's infusion of Natural Killer Cells on Thursday.
Blessings!
Our nurse supervisor, who is an Arkansas Razorback fanatic, had her 'after game' display. It showed a large red Razorback hog laying on his back covered in band aids with hypodermics stuck all over. She enjoys putting her display up every weekend to entertain the patients. If you are not a football fan, Arkansas lost it's coach to a major scandal just before the season opened. Then, the star quarterback got hurt. The season has been a disaster. These folks really are Razorback fans here!
Deb's labs came back with excellent results but she had to have a unit of blood. Kristen, Dr van Rhee's APN assistant, spent a lot of time with Deb. She is making sure everything is going on-track while Dr van Rhee is back in Holland. She said he is planning on participating in Deb's Tuesday pre-infusion meeting via telephone on Tuesday.
Today Deb ministered to a person in great distress. It seems the more Deb is hurting, the more her Godly character shines through. November 23 will be 38 years of marriage for us and I still am being surprised, amazed, and so proud of Deb!
Because of the meds, Deb needed to come straight home after clinic. I asked what she wanted to eat today and while she slept, I made her a supper of pork loin and gravy, home made mashed 'taters, baby lima beans, and a pear salad. Late afternoon she woke up and just as we were beginning to eat, the doorbell rung. It was our condo neighbor, Mr Sam. Wild guess, he is 75-80 and lives alone. He has to use a rolly cart to get around and is always so glad to see us. He lived in Augusta 50 years.
We invited him to join us and he ate a good supper, talking all the while. We enjoyed his company. He was raised in the NE corner of Arkansas near Blytheville. He worked on the Mississippi River on a big barge that had a huge steam powered 87' arm and bucket for scooping sand and gravel out of the river. During WWII years his father worked at Oak Ridge, TN as did Deb's father. While there, Sam's older brother got a contract to repair typewriters and calculating machines. Sam learned the trade assisting his brother. After WWII, Sam enlisted in the Marines. The Korean War was raging by now, but because of his background in typewriters, they gave him more training on teletype technology and he spent the service time in North Carolina. His wife was from between Florence and Darlington, SC. He was able to spend a lot of time with her family. After the Marine stint, he moved to Augusta, Ga and operated a typewriter and business machine store. He built his wife a beauty parlor which is now a bank branch. He is proud of her former shop building.
While in Augusta, the government constructed the Savannah River plant which had over 40,000 employees at one time. Sam would make copies of building and engineering plans for the site and for projects at Los Alamos for the engineers. He had a machine that would make copies up to 24' long. So, Sam got to support Atom Bomb making at Oak Ridge, and Hydrogen bomb making at Augusta. He said that's where he first learned of the dangers of alcoholism. The most skilled employee at making the large prints on a clear plastic would lose it on these precise jobs and go on a multi-day drunk. He apparently could not deal with the pressure. The drunk's wife begged Sam and the staff not to bring him any booze because he would stay drunk as long as he could get whiskey.
Sam used to golf and fish a lot. He had a cabin on a lake in SC and his stories of trot lines and fish baskets reminded me so much of fishing with my grandfather.
After his wife died after 47 years of marriage, he left Augusta and moved to Arkansas where he re-married. His second wife was a school friend that he had grown up with. They had stayed in touch through annual school reunions from their small community school. Mr Sam had also been friends with her late husband. They operated an office supply here in Little Rock until retirement. They sold their big home and moved into the condo for retirement. She died a few years ago.
Mr Sam wanted us to know about his trip next Thursday-Sunday. He and his step-son are flying to Washington, DC for a family wedding.
He held Masters tickets for many years and has kept us in Augusta/Masters magazines.
Tomorrow repeats the past few days and we are staying hunkered down avoiding any source of infection that could hinder Deb's infusion of Natural Killer Cells on Thursday.
Blessings!
Saturday, September 29, 2012
Day -5: Saturday-Dr van Rhee gone, Liz goes to clinic
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| Liz |
 |
| Deb |
 |
| Deb shows Liz how to interpret the labs |
We sat in the cluster today for the first time with classmate Val from Virginia. He was glad to meet us and learn about our Natural Killer Cell progress. He is very knowledgable about his condition and various treatment protocols.
Val reported that he has not had as good medical care in Virginia, where there is an air of superiority about the medical system there. He has been interviewing local oncologists to work with him and to coordinate with the UAMS staff to care for him. He has his fifth interview soon and is not happy with what he has seen. His own GP doctor of twenty years basically told him he will not even do lab work for him when at home. Val also was disappointed by the care from the famous Johns-Hopkins Institution.
Val was amazed to hear of how caring Deb's own Georgia medical staff has helped her. For which we are so grateful!
Deb got her designated chemo and when the labs came back, she needed a unit of blood. Still,we got out by noon! Deb was woozy by now and barely able to walk unassisted due to the pre-meds she got to help her receive the blood gracefully. So, a light lunch and then home for a long nap.
As we left the clinic, we checked in with van Rhee's assistant-APN Kristen. She told us that Dr. van Rhee had gone back to Holland to care for his 83 year old mother who had fallen. He probably will not be back in time for Deb's day zero infusion, but Kristen assured us that Dr van Rhee's A Team would be on duty and caring for her.
Asked if that upset her, Deb replied that "God is still in control."
Amen!
Blessings!
Friday, September 28, 2012
Day -6: Friday
We drove the newly repaired LWC to clinic this morning. She was glad to be back with us! We've become very close!
Deb began today about 6 on the Woozy-meter. She had the entire 2 liter infusion overnight. The bag-drag is so inconvenient. Think of sleeping with an electrical pump noise pulsating every few seconds 24/7. Try rolling over only to almost snatch the line out of your neck, which is attached to your flesh with stiches! Bathroom? Trying to get dressed? Remember, the 3 foot line hooks you to a heavy bag. Just think of it as a body anchor!
When we got to the clinic, the reward for having completed the 2 liter infusion was getting another one hooked up! Yippee!
Sandra gave Deb excellent care. Because Deb is on this high-interest Natural Killer Cell test, all the nurses are using extra care to make sure all the meds and labs are as directed in the doctor's orders. For that we are so grateful!
Tomorrow our neighbor Liz is going to clinic with us. We are so looking forward to spending some time together.
Blessings!
Deb began today about 6 on the Woozy-meter. She had the entire 2 liter infusion overnight. The bag-drag is so inconvenient. Think of sleeping with an electrical pump noise pulsating every few seconds 24/7. Try rolling over only to almost snatch the line out of your neck, which is attached to your flesh with stiches! Bathroom? Trying to get dressed? Remember, the 3 foot line hooks you to a heavy bag. Just think of it as a body anchor!
Sandra gave Deb excellent care. Because Deb is on this high-interest Natural Killer Cell test, all the nurses are using extra care to make sure all the meds and labs are as directed in the doctor's orders. For that we are so grateful!
Tomorrow our neighbor Liz is going to clinic with us. We are so looking forward to spending some time together.
Blessings!
Thursday, September 27, 2012
Day -7: Loads of chemo, hard day for Deb + LWC at home
We were supposed to get a call from the scheduler if any changes were to
happen. We got no call, so we showed up about 8:30 am for our 9 am
chemo infusion appointment. Deb was getting settled into the large
special chemo-recliners right at 9 am. At 9:05 we were handed the new
schedule which showed that Deb was to be at an MRI at 9 am. I quickly
called MRI and told them we were coming and to hold our spot. (MRI is a
tightly controlled asset and is tightly scheduled)
We scurried downstairs as fast as Deb could go, which was pretty slow due to her feeling so bad. After Deb signed in, she had a few minutes to chat up our bud Troy. He is such an encourager!
After the MRI we headed back to our assigned cube and began a full day
of labs and chemo. We had multiple APNs check out Deb. Deb is very much
being watched and monitored by various folks. We can't imagine better
care!
Here are the chemo's and days scheduled. Note that meds often have 2 or more names just to add to the confusion:
Bortezomib: -days -9,-6,-2
Mesna: -7,-6
Cyclophosphamide: -7
Dexamthasone: -6,-5,-4,-3
Fludarabine: -6,-5,-4,-3,-2
Interleukin-2: 0,1,2,3,4,5,6,7,8,9,10,11,12,13
Deb had a very difficult day. When we were released I rushed her straight home and she went straight to bed. After she was settled down, I headed out to the body shop to pick up LWC (Little White Car) She looked very good after the new parts and paint were added to her front end. I had asked for a bid on a total new paint job after insurance covered repairs and was quoted 6K, which I quickly declined!
LWC was so happy to come home!
Tomorrow is day -6
Blessings!
We scurried downstairs as fast as Deb could go, which was pretty slow due to her feeling so bad. After Deb signed in, she had a few minutes to chat up our bud Troy. He is such an encourager!
Here are the chemo's and days scheduled. Note that meds often have 2 or more names just to add to the confusion:
Bortezomib: -days -9,-6,-2
Mesna: -7,-6
Cyclophosphamide: -7
Dexamthasone: -6,-5,-4,-3
Fludarabine: -6,-5,-4,-3,-2
Interleukin-2: 0,1,2,3,4,5,6,7,8,9,10,11,12,13
Deb had a very difficult day. When we were released I rushed her straight home and she went straight to bed. After she was settled down, I headed out to the body shop to pick up LWC (Little White Car) She looked very good after the new parts and paint were added to her front end. I had asked for a bid on a total new paint job after insurance covered repairs and was quoted 6K, which I quickly declined!
LWC was so happy to come home!
 |
| Before |
 |
| After |
Tomorrow is day -6
Blessings!
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