Thursday, October 30, 2008
Peggy is helping Chase with school, so I am decided to make a contribution to the website. Actually, Peggy has the info; and knows the facts much better than I do. I get confused…. plus she’s a better speller.
Then of course there’s the issue with me sleeping all the time. Especially since stem cell collection began, I sleep almost all day. I wake up to be shuttled off to get hooked up to the “stem cell sucker” machine, then off for more tests, then a shot, maybe a bathroom break, or Dr’s visit, and then I go back to the apartment totally drained. So, I sleep some more.
We got word today that I will probably be finished with stem cell collection Friday or Saturday. My collection count for today was right at 700,000, which is on the low side. All in all, we think the collection process was a success because I wound up with nearly 6 million cells, which is enough for another transplant.
Another cool thing that happened from yesterday is that I started using a pain relieving patch ~ Fentanyl, instead of pain pills. I can take the pills in addition to the patch but I haven't had to. The patch has made me a lot more mobile, since I don’t have peaks and valleys. Now I don’t have to wonder if it is going to hurt to stand up because my meds have worn off.
Believe it or not, just typing all this up is making me tired, so I’ll let Peggy finish this note. Before I go, I do want to thank you all for being so diligent in your prayers, it gives me strength and I thank you.
Yes, glad Frank is awake and in the living room with us! He even helped Chase with some history. I like it when he updates, I just can't get him to very often.
Yesterday’s appointment with Dr. Barlogie left us drained and confused. At the end of it all, we decided to press on with collection, while he met with his team at Tuesday Conference (a round table discussion about your specific case) and we would meet with him again next Wed.
Frank spiked a 101.7 fever last night and still had fever during his collection today, so we went back to our unit and saw the APN and doctor there. They opted not to give him antibiotics while he is collecting because it interferes with the process. They ran blood cultures, etc and are watching him. He’s had infusers, whole blood and/or platelets every day. Collection depletes these things so it's normal to need replacements.
When I dropped him off yesterday, a lady that helps patients from their car to the doors knows who we are. She got a kick out of his outfit the other day too. She told Frank that radiology didn’t realize he was joking when he "dropped in" and thought he was a patient on the loose. They called Campus Police and they were looking for him for 2 hours! Oh… Frank enjoyed hearing that!
We'll be in touch! Have a GREAT time trick or treating! We'll miss being out in our cove with our neighors and miss our neighorhood party.
Tuesday, October 28, 2008
There we are...... yes, there are 5 of us in that tiny basket!
Tomorrow, we have to be in Apheresis at 7. They are going to collect and get us out of there quick so we can make our appointment to see Dr. Barlogie. We're anxious to discuss the PET, MRI and plans for vertebraeplasty. Frank is most anxious to get his ticket to Germantown.
We are specifically asking for prayer about our time with Dr. Barlogie ~ that God would give him all he needs to fight this disease and still meet each patients needs with wisdom and compassion.
Until tomorrow..... :)
Monday, October 27, 2008
We are trying to collect stem cells from him which is very hard to do after the marrow has been damaged from chemo. (The first time he collected we got over 40 million cells in one day.)
The procount is something they check each day. It is suppose to tell them about how many cells they can anticipate collecting in a day based on this lab value. Sat the procount was 1 million. He collected 1.1 million. As a general rule, you collect less each day.
Today his procount was 200,000. Our nurse said, it we can't get 500,000 cells in a day, we call it quits. I am not expecting you to collect that many today based on your procount, so i'll call you when i know for sure but this is probably it.
She called. Frank got 2 million today! Twice what he got Saturday! 4 times more than he needed to be able to try again tomorrow.
We are speechless at the goodness of God for his mercy and grace.....
Praise the LORD. Give thanks to the LORD, for he is good; his love endures forever.
Saturday, October 25, 2008
When we got back to the unit for his fluids and shots, scheduling called to set up the vertebraeplasty. She said the doctor saw the MRI and said he needed one, but when we got a copy of MRI, we had questions. There is small fracture in the cervical spine, and some compresson at T5. We want some clarification from the doctor, but it'll be Monday before we can talk to someone.
His PET scan was at 7pm. With the new line on one side and his port-a-cath accessed on the other, he said he felt like the back of a PC with wires everywhere. He was good and hungry after the test. I like watching him think about what he wants to eat. He really does ponder over what sounds good. He decided on KFC chicken, esp craving the slaw. So, we flipped channels and licked our fingers until time for bed. He slept on the couch so he wouldn't bother the line or his shoulder.
We got to the Aphereis unit at 7. They checked his counts. I have no idea what they're looking at, but whatever it is - a Procount - it's a predictor of how many cells they think they'll get from him that day. His count was 800,000 today, so the nurse said getting a million today would be a reasonable goal. Once you've had a transplant, the marrow is not the same, so it won't be like the first time we collected. We both slept through most it. Frank was kind enough to make room for me. The nap was nice for us both and the time passed quickly.
Being able to collect again brings hope to me. It keeps options open for him and I am so thankful for the opportunity to get more precious cells for him to use. Let's pray for the shots to keep working and the collection process to go quickly!Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer.
We got out of there at 11:50 and shuffled to the MRI room for his noon appointment. They're going to do the other parts of the body scan since they only did spine and pelvis yesterday.
After this we are headed to the hospital unit to finish out the day. His white count is high because of the shots for collection, but his other levels are low today.
He's getting some whole blood today, some platelets and Potassium and Magnesium infusers to go home with.
It's a long and busy day, and he's still taking pain meds around the clock. I know he's tired, and sore, and ready to go home. I look for ways to comfort him and try and keep his spirits high, but no doubt, it's the other way around. I just saw him pull out his Hope card and give it to someone.......
2 Cor 1:3-5
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.
Friday, October 24, 2008
Frank's labs have been looking better over the past 3 days. He got a bag of platelets but they've held their own at 35 the past few days. The CRP has continued to come down every day, even though he still has low grade fever at night. And... the white count has just jumped up! It went from 0.2 to 0.9 to 4.0! And this morning it's 8.15! Yippee!
We had a doctor's appointment to see Dr. Barlogie yesterday. Dr. B set things up to begin the collection process today. We are scheduled for the Apheresis room, where they will do special blood counts to see when it's time to start the process. He'll have a special CVL line put in sometime today.
Frank was honest with him about the level of pain he has been in. He seemed very concerned and ordered a MRI. He said he wants to find out what's going on "because Frank is NO wimp ~ not at all ~ " And we all agree with that don't we? The biggest concern would, of course, be if the pain is because of any myeloma not being taken care of. We don't think that's it. The more reasonable culprit is a possible compression of the vertebrae where some of the lesions are. Our prayer last night was that the test would give us some answers. We left his office at 5ish and had to be back for the MRI at 7.
Frank's taste buds have been off because of chemo, and we haven't gone out because of his white count being so low. But with both of those better, eating out was going to be a treat. So, we met the kids at The Arkansas Burger Co. Our friend Kristy recommended the place and we've been saving the opportunity for a time such as this. Hummmm... it was worth waiting for! And we made it back just in time for his appointment.
The kids had a blast over at the Ray's house. What a blessing they have been. We have mutual friends in Memphis, and they've been so sweet to take us under their wing, open up their home to us and make us feel so loved. The boys went to church Wed night with them and last night they hung out and played Rock Band. I'm so glad they can get out of the apt and have some fun.
So, here we are at the hosp. We got here 7 am sharp! Just going back to the same place we collected his stem cells almost 6 years ago brought back a flood of memories and reminded me of how far we've come in this fight.
His port-a-cath isn't working this morning. They need it to give him magnesium and platelets so he can get the CVL line put in. After the line gets put in, we'll just wait for the call that he's ready ~ or "ripe" as Frank calls it ~ to collect. It could be this afternoon, or Sat.
He's also having a PET scan tonight to go along with the MRI in their search for the cause of pain.
Please pray specifically for: his port-a-cath to work, ( they got it working! 11 am ) for the x-rays to be decisive, ( MRI showed compression, so a vertebraeplasty is scheduled for Thursday morning ) and for the kids as they travel home for the weekend.
Tuesday, October 21, 2008
But it was not the regular fill up the tub and jump in bath; it was a “bath” that sick people finally take because it has been so long since the last one that you know you smell funny
and you probably need one anyway. I figured everyone would benefit.
Now bathing for most doesn’t require a lot of effort, but for me it’s a different story. First,
it hurts to stand up, sit down, bend over, walk, really everything I do hurts. My muscles & bones just haven’t been getting along lately. I feel like I’ve been in a car wreck.
Secondly, I always seem to have some “thing” attached to my chest. Tonight, it’s a Phosphorus infuser, which is delivering extra nutrients so that my body can repair the damage that the cancer and the chemo have caused. I have to wear it for 5 hours tonight.
So after Peggy and the kids left to go run errands and get a bite to eat, I made my move.
As my water ran into the tub, I did my best to position my infuser on the edge where it wouldn’t fall in and I eased down into the water. As I waited on my water to rise, I decided I would pray. Again, this bath really was very different.
I started praying for all of you! I thanked God for all the people that have and are lifting us up each day. I thanked God for the way everyone has bathed us in prayer for strength, both physical and spiritual, for your prayers for my healing, for answering the very specific prayers of our immediate needs and for how He has honored the requests of His people.
I thanked Him for bringing people into our lives at specific junctures who have then delivered His divine message.
No one knew this but I have been agonizing over thoughts of being physically disabled and today God showed me that my body is healing. I thanked God for once again showing me how He honors His word.
(James 5:15-17 15 And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. 16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective. 17Elijah was a man just like us. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years.)
I started seeing all of the faces of all of you in my mind. It was a mental video of all the people that have shaken my hand, done us a favor, delivered food, etc, etc, and then told me that you are praying for us. I thanked God for you, for being the hands and feet of Christ to us.
To be frank at this point I was overwhelmed. I sat in my tub of water and cried. Not just tears, I wept out loud and again thanked God for His mercy and grace and love. “Our God is an awesome God he reigns from heaven above, our God is awesome God….”
I prayed for all of you, for your hurts, your needs, and for your faithfulness. I praised God for you!
Yes, I took a bath tonight, but I think everyone got a little wet.
Monday, October 20, 2008
Frank and I both avoided updating the website yesterday - neither one of us felt like doing it. I lost the coin toss! When we have a bad day, it seems like we don't want to share it, but that isn't honest. It's unrealistic to think that we'd be "up" all the time. And one thing we've learned over 6 years is that God is there in the good and bad days ~ and even more so when we're feeling down.
Sunday Frank's CRP went up again to 167, from 144. Normal values are between 1 and 10. He was running fever in the 100's. We were still doing IV antibiotics at the apt.
All his other counts are still going down, which is to be expected. But his platelets were 16, so he got a transfusion. All of this is pretty familiar to us. We know the drill very well. What's different this time is the soreness/pain that Frank has. It hurts me to know that I cannot fix it, or make it better. Even a quick stop or bump in the road makes him groan. I have found a new route to the hospital that has smooth roads so the ride is more comfortable for him. Doting over him doesn't change it ~ sometimes it makes it worse! I am learning to hold my tongue and not ask over and over, "What can I do? Are you alright?" He knows I just want to help, but its still irritating when you feel bad and really just want to be left alone.
Chandler met my mom in Forest City to get Chase and bring him back to Little Rock. I was so thankful she did that for us. She's been so helpful. Chase had a great time and it was good to have all 5 of us together again.
Yesterday afternoon, we learned that our patient friend, Dr. Francisco from Miami passed away Saturday. We've asked you to pray for him before in one of our blogs. He was 41, fighting Myeloma since age 38. He and Frank have had the same treatments, including the 6 transplants. Francisco had an intense treatment schedule, having done in 3 years what Frank has done in 6. His precious wife and I talked and cried together. We were able to see her today and say goodbye before she leaves for home in the morning. She is being strong and it is evident, in every way, that she is leaning on the Lord for her strength. Their kids are 5 and 7. Please pray for them tomorrow as she reunites with her children and tells them about their daddy. We found out soon after that another patient, and our apt neighbor during the last transplant, also passed away the Sat. He and Frank were both getting PAC MED at the same time. It's like a family here with other patients we make friends with. The common bonds we all share run deep, and our hearts are broken for them as we share their grief.
Cooking was the last thing on my mind Sunday afternoon. Liane, Chandler's piano teacher, has a friend here that used to live in Memphis. Marian has been so sweet to take us under her wing. She cooked a meal for us and brought it over... perfect timing! The kids were starved, and it was good for us to sit together and eat. Frank even ate and said it hit the spot. Satisfying his taste buds right now is a tall order. We saved him leftovers and he ate it again tonight. What a treat that was for us.
Today, Zach got up and drove Frank to the hospital for his shot and labs. It's a quick visit, knowing he goes back in the afternoon for any meds and fluids he may need. I stayed here with Chase for class. When we got back to the hospital this afternoon, we were happy to get some good news.
His Lambda light chain and IgA marker, his type of Myeloma, are within normal limits for the first time since July. That is great! Also, his CRP went all the way from 167 to 108. Wonderful! We were so excited about that!
Other labs: WBC 0.02, Hgb 9.6, Hct 28.4, Platelets 11. So, he got a transfusion for platelets, and came home with an infuser for Potassium and Magnesium. And of course, the antibiotics.
As we sat there waiting, Frank got a phone call. It was Sandra with insurance. Are you ready for this? Humana approved the stem cell collection so Frank can collect more stem cells! We are absolutely amazed! Sandra said they had a long talk with Humana about Frank's age, and quality of life, etc and they approved it. Tears of joy!
Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the will of God. And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.
Frank and I both send our love and gratitude for the time you give to reading the blog and praying for all the details of this journey. To God be the glory, and may He bless each one of you!
Saturday, October 18, 2008
It's about 9:00 and Frank, Chandler, Zach and I are watching a movie ~ Stranger than Fiction, with Will Farrell. It's been a beautiful day here, and cool. We're all comfy and settled in for the night. Chase is at Victory Ranch on a junior high youth trip.
Since we posted last, Frank has been running a fever. If it hits 101, we start fever protocol ~ IV antibiotics. His CRP (inflammation marker) level has been going up each day. Today, it took a jump from 35 to 144. So, he's on IV infusers of antibiotics that we do at the apt. They did a nasal wash at the hospital to check for anything viral, and ran blood cultures. They already tested him for the flu... which he doesn't have. They are covering all the bases. He is still achy and has some pain, but the pain meds give him relief. His spirits are good and he's been watching football most of the day. MSU isn't doing so good..... but... we don't let it get us down!
Zach stayed with Frank yesterday while Chandler and I drove Chase home to go on his trip. He loved driving him around! We had a whirlwind 7 hours at home, not even sitting down unless in the car. We went home, packed up Chase, dropped him off at church, went to get a new car battery for the Honda, came back home to get in her scheduled long run (8 miles, yea Chandler), showered, ran 2 errands and headed back to Little Rock! We got back at 2:00 am. Yikes! Just time to get a nap before being at the hospital at 8.
I felt so bad to learn Frank had run fever. APN. It started after I left and he didn't want to worry me, so he didn't call, knowing we were coming back in the same night. Zach took good care of him and they enjoyed their boy time. But I was really glad to be back.
Today's labs were what we expect to see right now.
Platelets 25, no transfusion today, but maybe tomorrow. 20 or below gets a transfusion.
Please pray with us that his fever will go away, and he will stay free from infection, or any complication and that his pain would get better.
We miss home the most on Sunday's. But we'll look forward to seeing Chase tomorrow and hearing all about his trip.
We love keeping in touch with our other patients/friends. Susan, from Houston, and I emailed back and forth today, and she left me with a verse we needed today.
Joshua 1:9 "Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go."
Thursday, October 16, 2008
No, no this is not a post by Peggy, this is Frank. Let me explain.
I have spent the past 8 days being subjected to "the science experiment" that is my life and all I can eat is crackers, oatmeal, bananas, and Boost! (thank you Kimberly & Jay)
Of course during the time I am awake, I usually wind up on the FoodTV channel, with dreams of fine dining. Or heck a big fat cheeseburger and greasy fries.
So, while I wait patently for my body to reacquaint itself, with itself...I will have to live vicariously through my memories of GUS's fried chicken, hot tamales, bacon wrapped asparagus, grilled salmon, shashmi & sushi, hot breads, and fine cheeses. I haven't had a craving for Spaghettio's and ice cream so maybe I'm not prego after all....
Today was day 4 after transplant, still not hitting the bottom on my counts yet but with a WBC .04, PLts 20, Hemo 13.1, and Hematocrit 37.8. It won't be long before I've bottomed out and I'll climb out of this "hole" again.
Peggy and the kids are holding down the fort here in Little Rock, but please keep praying for our speedy recovery. We miss being home!
May God Bless You in All that you do,
Wednesday, October 15, 2008
Tuesday, October 14, 2008
We just got here and someone was looking for us..... the lab tech that delivers the cells came in to tell us we were right. I only have one bag left. She double checked. The 2 bags, 11+ million was probably the total before I used one yesterday.
Hearing that news was like being all excited you found sour cream for your baked potato (it was behind the pickles), but opening the lid only to find out it needs to be thrown out! "Oops. Never mind"
You can't always help thoughts that go through your head, esp my head. But we got a chuckle out of it anyway.
Just waiting on labs and getting fluids at the clinic...
Monday, October 13, 2008
Psalm 120:1 In my distress I cried to the Lord, and He heard me.
Deena, our APN, came in to talk to us. The morning couldn't have been any sweeter. We were in the last room at the end of the hall. We didn't share a room with anyone today, and it was quiet. Frank shared his thoughts with Deena, and she was the one sent to minister to Frank today. She reminded him all his thoughts were just part of being human. It's important to feel and think on many different levels from time to time. But we deal with our thoughts and keep our faith and the goal is not to stay down for long. She was so encouraging as she told him how special he was to her and the entire staff. He is a role model to so many because of his attitude and disposition. My synopsis doesn't do her sweet words justice. She spoke the perfect words for Frank to hear. Deena is from India and it's taken years to fully understand her accent at the rapid speed at which she talks sometimes. But she is a believer and we love sharing stories of faith and love for the Lord. She said the first candle she lit at church Sunday was for Frank, and she called to have her father light one in India for him. The staff says Frank is her baby, and she confessed. The affection is mutual!
While we were waiting on the cells to arrive, we got a call from the insurance lady with UAMS. I could tell from the large sigh released by Frank that it was good news. Humana has approved the transplant! Frank and I just prayed right then to thank God for his continued goodness.
Well, they did arrive, and here is Frank about to get his 6th bag of stem cells. Amazing isn't it? I remember when he collected all those cells ~ on April 10th, 2003. Chandler's 11th birthday. We prayed God would be merciful and allow him get all the cells he would need. And He did! We found out today he has 2 bags left instead of one. (11+ million) We were told at the last transplant that he only had one bag left. I don't know how you miscount something like that. I imagined myself searching through my refrigerator and finding the pickles I wasn't sure we had! "Oh, here there are! Yeah" ~ "Oh look... another bag for Mr. Carlton. Cool!" I don't know who is right... but let's go with 2 bags left! If they counted them, they must be there.
As we got up to leave the hospital today, Frank said the link between mind and body is indeed a mystery. He said with the good - no, great - news today, he was feeling better! I am so so glad for my sweetie. I am proud to be his wife.
Thank you for praying for Frank and for all the details that surround his care. May you be blessed!
Ephesians 3: 14-21
For this reason, I bow my knees to the Father of our Lord Jesus Christ, from whom the whole family in heaven and earth is named,
that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, that Christ may dwell in your hearts through faith;
that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and depth and height - to know the love of Christ which passes knowledge that you may be filled with all the fullness of God.
Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.
Saturday, October 11, 2008
May God be gracious to us and bless us and make his face shine upon us. Psalm 67:1
Happy Sunday. We got done early today at the clinic. We were home by 10:45! Our wires got crossed about the chemo schedule. Frank actually got the Melphalan yesterday. It only takes about 20 minutes to infuse the chemo. Most of yesterday's time was spent chewing ice. "huh" you might be thinking.....I'll explain. The theory, although not scientific, seems to work. The Melphalan is strong and effects the mucous membranes in the GI tract from start to finish - or attic to basement - :) To help prevent mucositis, patients chew ice before, during and after Melphalan is administered to help constrict the vessels of the GI tract so the Melphalan avoids contact with the membranes. The drug is metabolized quickly and out of the system within hours.
Today he got discontinued from the back pack of pumps and fluids. He's free!! He's so happy he doesn't have to carry that around anymore.
His counts are starting to drop today. He's neutrapenic already. (That means his white count is below 2.00) So he has his mask now and will have to be careful about germs, etc.
WBC 1.61, RBC 3.71, Hbg 11.1, Hct 34.6 Platelets 71.Frank gets stem cells on Monday. His 6th of 7 bags! Then ~ we all know what happens next! We wait on levels to come back up! There is such comfort in knowing what to expect each day. It seems routine at times, but we never take for granted the seriousness of it - nor the miracle of it! Keeping free from infections and knowing the cells are grafting in the marrow is so important. Thank you for your faithful prayers for those specific things.
It's quiet here without the kids but the time alone has been nice too. It always gives us the opportunity to talk and pray together. Being away from our home isn't easy, but there are nuggets of gold tucked all around. That is one of them.
I miss our furry friends. Moses, our cat is very fond of my mother, but Casey,the golden retriever, follows my dad everywhere. I think he hides bacon in his pocket!
Friday, October 10, 2008
I arrived at UAMS today at 5:15am as requested and got down to business right away. I loaded up first thing with my radioactive isotope injection and got inside the PET scan machine an hour later. Once done with that, I marched upstairs for some more chemo drips and more fluids. They like to keep you hydrated that's for sure.
Side bar: with all the steroids and hydration that I'm on I now weigh in at 167. I'm usually 155 or so. If you've ever seen one of those ugly goldfish with the big buggie eyes that's what I feel like. I just hope when the steroids are stopped, I'll drop some of this water weight.
Once I got finished with chemo, we then went over to WAIT on Dr Barlogie. Our appointment was at noon today. Promptly at 3:00pm, we saw Dr B and got the semi-good news. Of the 34 lesions that I arrived with, I now have 19. That is good news, however our desire was of course to have zero lesions show up on the scan. Well, maybe less than ten lesions would of been nice. There was also mention of 2 lesions in my humerus bones - one in each. But, in the end - it IS working and we do have one more day of regular treatments and then a big whopper dose on Sunday. Pray for the Whopper to put this stuff down.....
The kids are home enjoying fall break with their friends. Please keep Jimmy in your prayers. He's very uncomfortable and has a long recovery ahead.
"My soul, waits silently for God alone, for my expectation is from Him. He only is my rock and my Salvation. He is my defense. I shall not be moved. In God is my Salvation and my glory; the rock of my strength, and my refuge is in God." Psalm 62: 5-7
Going to eat Chinese food....
Thursday, October 9, 2008
Today (Thursday) was a long day. I arrived at UAMS at 5:45am in order to get started with a PET Scan that was to be used to determine the progress that I've made so far.
Well, this plan was quickly dropped when it was discovered that the chemo bag I was wearing was full of D5W (sugar water). So much for not eating to prepare for the scan.
So, on Friday I will arrive at UAMS at 5:15am to try again.
Friday will be an all day affair. PET scan, chemo drip switch out, and then a visit with Dr Barlogie in the afternoon. This will be the meeting where we get "the news" as to the progress we've made since we got started this past Tuesday.
Here's a little hint on the progress, the egg sized knot on the back of my head is gone! That is progress my friends. Thank you for your prayers and for keeping tabs on us.
More as soon as we know....
Tuesday, October 7, 2008
For day one, it was tougher than we expected. Usually we see the accumulative effect over the week ~ getting more and more tired as the days go on. But today, it was almost immediate. Frank felt it right out of the gate. He's never had this BCNU drug. He got flushed and his blood pressure dropped, headache and tingling in his face. They slowed down the rate and that helped, but after that he slept the whole day.
Getting up to go home was interesting. He could hardly walk! So much for the stairs this time. I called for help and the cute little golf cart took us through the hospital. He was more tired than I expected . But I am so thankful for the out patient system they have set up here. Getting up and walking around is so much better. He came home and slept till 7.
He's been so much better tonight. He watched some of the debate, and checked his email. I fixed him some dinner and he ate well. He's asleep again. :)
His fanny pack of chemo is so heavy this time. We put it in Zach's back pack with the padded shoulder straps. That's more convenient for him.
Having the kids here is so sweet. They each have their time snuggling with him, and me. For all the down sides of having them out of school, (they miss it terribly) none of us would trade this time together for anything. It is so special. Chandler leaves every night and drives to a restaurant nearby to sit in the parking lot and enjoy cell coverage! Crazy!
Frank is strong and he's a fighter. We feel good about this and we're glad things are rolling ~ finally. We are praying for great results! They will do a PET scan Thursday morning at 6am to find out.
Good night......and now good morning....
it is interesting to me how one's perspective can influence the way the story is written. After waking up this morning and reading Peggy's account of how yesterday played out, I thought I would add a couple comments too.
First, she was correct with how quickly the chemo "got a hold" of me, but the bonus for me has been that I am in much less pain now. For the past 3-4 weeks I have been hobbling around like I have arthitis in my hips and back . Now that I am loaded up on steroids and chemo I just about can't feel anything. I like that part.
And while I am experiancing max. fatigue, I have not yet felt the "fuzzy headed" fog that envelopes my mental processes once I take all this hard stuff. I figure it will be in the Sat-Sun time frame before I go fully under the spell of the chemo drugs.
And guess what, the goose egg lesion that is on my head is almost flat now.....
WAITER - "How do you like your goose egg cooked Mr Carlton?"; MR CARLTON, "I like them heavily fried in a mixture of chemo-coctails, on both sides of course, and then thrown away thank you very much....then I'll have some orange juice."
We are enjoying being together as a family, I am so thankful for the sacrifices that the kids have made, and Peggy too, in order for us to be together at this time.
We are going to get through this, and return with more vigor than we had before we left!
On Friday we had not heard from insurance. Come to find out the entire transplant office was out for seminars. Glad no one needed anything important..... please excuse the sarcasm. It's been frustrating, but we are trying to stay positive.
We decided to go home for the weekend. It was so so good to be home. We visited with family and friends and saw my nephew Jimmy all laid up in his cast. He's having surgery today at 2, so please pray for him! But the highlight of the weekend was going to church on Sunday. Just being there, singing and having communion was just the medicine we both needed.
Chandler and Zach had a wonderful time on their Victory Ranch trip. It is so wonderful out there and the weather was great. But as Sunday came to a close, we all headed back to Little Rock.
Monday morning, as the kids and I had school, Frank headed to the hospital to see what he could get done. The transplant team of Humana is out of the office until Wednesday, so Frank signed papers to go ahead and get started. The fighting gloves are on the the bell has rung!
So, here we are! He is already asleep. The "B" of the BEAM + blah + blah blah.... is infusing over 2 hours, then the "A" and "E" after that. Another handful of pills by mouth and Day One will be over. He is very happy that a central line didn't need to be put in this time. They are using his port-a-cath. That makes things more comfortable for him.
Our favorite and wonderful APN Deena has charge over us and we are so blessed. She said this treatment will be tough. Frank said "Bring it on!" She called it the kitchen sink of chemo. Well, Frank and I like to cook.... maybe the kitchen sink is just what we need to do the trick!
We'll be updating daily, or close to it. Thank you for signing in and saying hi. It means so much!
Craig used this verse Sunday, and I've decided to memorize it: Romans 12:12 Let your hope keep you joyful, be patient in your troubles, and pray at all times. (TEV)
We love you all ~ thanks for caring so much for us! peg
Thursday, October 2, 2008
We didn't hear anything from the insurance company yet. But today was interesting. I would much rather Frank be telling this story, but he's sound asleep!
Frank was in a meeting at the Myeloma clinic with some of his guys from work. He was glad to be able to work a little since he didn't get started on chemo today. When he got home, we asked him how things went. Guess who was in the meeting? The insurance manager we had the meeting with yesterday. Frank said the look on her face was pretty funny. He said you could see the confusion trying to place it all together.
She was pretty straight with Frank as they talked after the meeting. She said that she has never seen an insurance company pay for 5 stem cell transplants. She's never seen them pay for more than 3. So, she was not very encouraging about the approval.
All that did was make us so thankful to see how God has provided for us over these past 5+ years. (It will be 6 in Nov) We will continue to trust in that provision for us no matter what we hear from our insurance company. We have seen God work in mysterious and marvelous ways. His thought are higher than ours, that is for sure! We are humbled amazed all the time!!
Frank is doing well in the waiting. He is uncomfortable a lot of the time. He's takes pain medicine now to help him through the day. He doesn't complain though. You just know by watching how carefully he moves around, etc. Once we attack those lesions, we are hoping the pain will subside.
The kids are doing okay. Biggest issue is that they miss their phones. We don't have any cell coverage at the apt. NO TEXTING?? Are you kidding me!?!? Actually, I am bummed, too. I do my share of text messaging. We wish we could be staying in better touch with everyone. We all have our computers, so email email email! Thank you for those who are sending sweet words of encouragement. We appreciate it so much!
During the debate tonight, (kids are watching for a grade!) we got a phone call that Jimmy was on his way to hospital with a soccer injury. We don't know what's going on yet, but I think it's his knee. He's downtown on some Morphine at the moment. Please pray it's nothing serious. We're anxious to hear something..... from the land line! Which is 501-225-6971. Call if you can!
"Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in every thing by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Phil 4: 4-7
This is Dr. Barlogie and Frank on Wednesday. Not the white coat most people expect. Leather pants is his usual fall/winter attire. And just in case you're wondering..... his idea for Frank to sit on his lap! And I'm not jealous..... :) Gotta love it!
love to you all..... we're hanging in there.... In His grace, Peg
Wednesday, October 1, 2008
We saw Dr. Barlogie today. We want to share all we know with you, but just a warning ~ this will be a long entry.
When we were here last, the disease had shown up in 35 new lesions. One of our prayers is that things wouldn't progress in the 2 weeks we were gone. We were happy to fnd out that the PET showed only 34 lesions. I guess he left one in Europe! However, the ones in the spine and pelvis did grow in size. Some of the other markers have increased, but nothing alarming, and not unexpected.
Dr. Barlogie wants to give Frank a 9 drug regimine. For the ones that love detail....
The treatment is BEAM + VTD + Rapamycin + Cisplatin. What is all that, you ask?
It's BCNU, Etopiside, Ara-C, Melphalan, Velcade, Thalidimide, Decadron, Rapamycin, and Cisplatin. All these drugs work a little differently to act on a different stage of cell reproduction. Giving all these will enable the cancer cells to die at each stage of their growth. Sounds good to us!
His heart functions came back with no change from 2006. That was good news. That means his heart has handled all these treatments really well. Of course, we can all look at him and know that! We don't need fancy tests to tell us Frank is strong.
Our hope was that he get started today. But of course, we have to wait on insurance approval. The manager over insurance came to talk to us. I guess you say she was good at her job because she talked to us for a while and she was very kind and friendly. But after she left the room, we realized she wasn't giving us great news, but we didn't realize it until after she left.
She said we were really lucky to have gotten the coverage we've had so far. Many other companies don't cover 5 stem cell transplants. This will be his 6th. She said it would have to be called a transplant (even though sometimes calling it a boost is a more favorable way of getting approval) and we just have to wait and see what they said. It could take 3 days or so. If we didn't want to wait, we could sign this little piece of paper that says we will pay for all of this if without insurance approval. She was so nice and friendly.......
So.... we are waiting. And are resting in the knowledge that we are where we need to be. And God will take care of us. Just as He always has, and we trust Him to always do. Please join us in this prayer.
The kids are with us. That has given me a great deal of peace in the decision we made about school. I was having my doubts a few weeks ago. The change isn't easy, but that doesn't mean it wasn't best. But now that we are all here together, all the planning has come together. We are glad that part has worked out like it has. Chandler is training for a half marathon. Zach has been enjoying the free time, although he misses his soccer team. Chase is going with the flow. We told him he's really in night school, because I work with him after I get back from the hospital with Frank. He's got the mornings off.
Psalm 33: 20-22 Our soul waits for the Lord, He is our help and our shield.
For our heart shall rejoice in Him, because we have trusted in His holy name.
Let Your mercy, O Lord, be upon us, just a we hope in You.
Frank has the only cell phone with coverage. Me and the kids have no bars at all in the apt. The local number is 501-225-6971.
We'll let you know something as soon as we do...... here's Frank......
My Little Rock days have been a whorl-wind experiance for sure. I arrived in Little Rock Monday around 1:30 and walked right in to the test lab. Blood work, EKG, PET scan, ECHO, MRI, Bone Marrow biopsy, and to wrap it all up I entered an apple bobbing contest. I would of won to but Zach pushed me in the tub.
Day one and two were just stacked with appointments but all very well managed. Hats off to the staff of UAMS, a tightly run ship for sure.
There was one incident of sorts. On Tuesday, I engaged the driving services of Zach Carlton to deliver me to the bone marrow biopsy room. He was happy to drive and eager to watch the proceedure, being that he aspires to be a surgeon one day.
Well all went pretty much as planned. Dad arrived on time, got assigned a room, went in and dropped his pants, got draped and then hopped up on the table. Ryan, the tech, inserted the needles and started screwing the corkscrew device into my hips. Like I said everything was going along pretty well....they started chipping away some bone fragments, and then it was bone marrow pull time. Once they started puling the marrow, ol Frank tensed up for the pain and Ryan the tech started drawnig it out. No sooner than the first RED tube was pulled Ryan's assistant yelled out, "hey we have a problem".
Yep, Dr Zach had started sweating, turned a cold shade of gray, and was sliding right out of his chair onto the floor!
They had to stop messing with me to get some assistants in the room and put Zach on a bed in the next room. Ryan and I were laughing so hard that we had trouble finishing our pulls.
Zach came out of it after some crackers and juice, but we were worried about him for awhile.
He came away from the experiance with a new appreciation of "procedures" from a patient perspective. Seeing his dad in pain didn't sit well with him.
I love you too, son!