Dry Heaves
Definition: repeated involuntary retching unaccompanied by vomit.
Not a pleasant entry for the Word today, but it will explain some of the challenges ChemoSabe has had this week. Although he continues to take himself to UAMS, he has had symptoms from this round that he hasn't had before. Before we had the stem cell collection, you may remember he told the doctor he felt great. No aches or pains or sickness. Then the doctor responded that wasn't a good sign. He was suppose to hurt and feel sick. He has gotten there on this trip.
He has come up rapidly the last few days. His WBC was 1.9 yesterday and today he zoomed up to 6.5. I was shocked when he called and told me the news this morning. He has gained 12 lbs. in two days. He came home with another infuser today of antibiotic and I had to flush the lines again.
He did sleep for the most part this afternoon, but went to bed at 5:30 p.m. He had just laid down when I heard his feet hit the floor. His nausea from the last two days finally was relieved by dry heaves. I don't mind being sick myself, but I just can't take him being that way. I got him back to bed and even though the RN told me last week not to give him Ativan, I needed to do something to get his body to relax. It is used for nausea, also. It would help the pressure he has had behind his eyes the last couple of days, too. He slept up to 8:00 and I convinced him he had to get something on his stomach. He has not eaten well this week. Says everything tastes sour. I made his favorite soup -- Minestrone, but he only took about 6-8 teaspoons.
I believe his illness this week is the result of the antibiotics and the growth factor shots. That, along with not eating well has just made him green. I do see a light at the end of the tunnel with his WBC coming up and his CRP going down.
Through all this tonight, he still doesn't complain. Every woman should have a husband like him. Crabby, yes... But, I know that is the meds he is on so I can deal with it. I just can't take him having the dry heaves. So, please God, let him rest tonight.
I have an update on my "Neighbor" story. I told my boss yesterday about the riding mower friend. My boss has a neighbor that lost her husband a couple of months ago and she ask him the night before if he knew of anyone needing a riding mower. As soon as I told him my story, he made arrangements for son and me to pick the mower up this weekend. Isn't God good? It may need a little work, but it will give me a the ability to do my yard and, (you know me by now) keep my pride. I just hate asking for help...I still haven't done well in that area of this illness.
The RN niece may be taking ChemoSabe in the morning if he is still ill. I have a training session at Ark. Baptist State Convention. At least I will get out before his lab appt and doctor appt. so I should be at UAMS by the time he gets there. I wish I could afford early retirement to be able to take care of him that way. But, he still would probably tell me he could take himself. He truly planned to go into the office today when he found out about the WBC. I could here the disappointment in his voice when he told me he was too sick to make it.
Dear Lord, I lift Poppy up to you this evening. Give him strength to make it through the next few days until his counts come up and his body continues through the healing process. Keep his spirits and good humor up. You have helped him so much in this area already. I need that part of him to keep myself up. Although he is sick, he still keeps me going. You have been with us so much the last few months. I know you are with us always, but your presence has been most alive in us lately. Thank you, Lord.
The bristle from new hair is starting to itch on the chrome doom. He has been shaving a couple of times the last few days. He loves his bald head so much I hate to tell him how much I miss his hair. He has changed so much. I am glad he has another doctor's appt. tomorrow.
I am going to depart now. Thank you for listening. Thank you for helping.
Good night and Love -- Pepper
Chemo Sabe
- ChemoSabe
- Benton, AR, United States
- Diagnosed with Multiple Myeloma-- May 2008
Wednesday, August 27, 2008
Tuesday, August 26, 2008
Neighbor -- Word for the Day -- Tuesday, August 26, 2008
Neighbor
Definition: one living or located near another
Yahoo has not posted a new Word for the Day in about four days, so I am choosing my own today -- Neighbor.
We had our doctor's visit yesterday, but again with a substitute doctor as last week. We are supposing the weekly visits are to just follow up and they can read the weekly reports while we are present. ChemoSabe asked to speak with the big kahuna, but we were told he was out. So, we can ask him specific questions, we thought, next Monday. ChemoSabe got a call yesterday afternoon that we have a sooner appt for Thursday at 3:00 p.m.
ChemoSabe is very, very tired. Tired from the WBC being so low and hemoglobin. Tired from not being able to work right now and even too tired to sleep. I wouldn't call it cabin fever. I would just consider him to be drained -- mentally, emotionally and physically. This last bout has been a massive drop in his system. The markers are low, his system has no sign of MM, his lesions are unremarkable and he doesn't have the M protein. He needs a break! He wants to ask big doc if we have have an extended break before the second transplant. Cross your fingers.
I desperately needed to mow the yard yesterday since all the rain we had last week. The boulevard was knee deep. It seemed to have jumped in growth overnight. Our yard has NEVER been so unkempt. ChemoSabe wanted me to wait another day. He claimed to miss me, but I could not see waiting as the heat will be increasing each day this week. So, I went out. I got the Joan Deere out and it started immediately. My problem with it is after it gets hot, it acts like it is out of gas and won't start until I pull about 1,500 times.
I was down in the knee deep stuff and had to stop to raise the blades. Crank, crank, crank, varoom. I got about two strips done and one of our neighbors came over to the curb and motioned for me to turn the mower off. I shook my head , "No" a few times thinking I didn't want him to see me struggle with restarting the thing. He made a few more attempts to get me to stop. So, with a sigh, I did... (much to my dismay). He commenced to tell me to get off the boulevard and he would bring his rider over and it would take much less time for him to cut the strip. Enters -- Pride. I tried to convince him I could do it myself as my tee shirt was already soaked with female sweat (you know us females don't stink). After much persuading, I surrendered.
The neighbor bit off more than he could chew. The grass was so deep and thick it took him three mow overs and four bags of grass to get it done. In the meanwhile I was doing the front and fence side. I walked down to thank him after putting some doe in my pocket to pay him. He didn't want to take it, but when he mentioned he would volunteer to take Poppy's bike out for a spin, I strongly convinced him to take the money. And, he offered to mow again in the deep area should I ever need it. What a blessing this neighbor was for me.
ChemoSabe wants to work tomorrow. We believe he will be ready with his WBC at 1.9, platelets at 44 and his last growth factor shot today. He did get another round of blood today since his hemoglobin was down. He came home with a potassium/magnesium infuser yesterday that ran for five hours. I had to disconnect it from his port and flush it out with saline and heparin (blood thinner for the IV). It was the first time I had ever done it. I have watched the nurses do it so much it seemed simple, and it was. We had called the niece, but she was working so I had no other choice. His CRP was coming down a little yesterday, but not enough to get by without antibiotics IV. He had none today.
He feels better this afternoon and I believe it is the blood and platelets he has received this week. He has gained about 10 lb. this week, but that is a direct result of the growth factor shots. He should be losing that in 2-3 days. The early mornings have been a drain on him, along with the sitting all day in the recliners at UAMS. We are just ready to slow down.
Our baby turns 40 tomorrow. He is the old one for we are still young at heart and spirit. He even looks older that we! ha
I did not mention that our neighbor's wife is paralyzed from the neck down and he still helps out people in our neighborhood. He works a full time job and takes care of her. She had an aneurysm last year and was informed she could take the risk of it bursting or have surgery with a risk of being paralyzed the rest of her life. She took the latter. He gets her out often for trips and just being in the yard. She was an avid gardener.
So, in closing -- I always thought the word, neighbor meant something special, but it 'only' means someone living near one another. Our neighbor on our other side has only given us grief and seems to be more intent on that when he found out ChemoSabe had cancer. Isn't that abnormal? That's another Paul Harvey story. He is what we call a real ___________... (horse's patooty). So, be a good neighbor when you see someone in need. I will be doing more of that myself.
Please continue to pray for our MM friends and for ChemoSabe. They are all doing so well in their recovery and especially with their attitude. They remain humorous and uplifting.
We love you... even if some of you are long distance neighbors.
Good day and Love -- Pepper
Definition: one living or located near another
Yahoo has not posted a new Word for the Day in about four days, so I am choosing my own today -- Neighbor.
We had our doctor's visit yesterday, but again with a substitute doctor as last week. We are supposing the weekly visits are to just follow up and they can read the weekly reports while we are present. ChemoSabe asked to speak with the big kahuna, but we were told he was out. So, we can ask him specific questions, we thought, next Monday. ChemoSabe got a call yesterday afternoon that we have a sooner appt for Thursday at 3:00 p.m.
ChemoSabe is very, very tired. Tired from the WBC being so low and hemoglobin. Tired from not being able to work right now and even too tired to sleep. I wouldn't call it cabin fever. I would just consider him to be drained -- mentally, emotionally and physically. This last bout has been a massive drop in his system. The markers are low, his system has no sign of MM, his lesions are unremarkable and he doesn't have the M protein. He needs a break! He wants to ask big doc if we have have an extended break before the second transplant. Cross your fingers.
I desperately needed to mow the yard yesterday since all the rain we had last week. The boulevard was knee deep. It seemed to have jumped in growth overnight. Our yard has NEVER been so unkempt. ChemoSabe wanted me to wait another day. He claimed to miss me, but I could not see waiting as the heat will be increasing each day this week. So, I went out. I got the Joan Deere out and it started immediately. My problem with it is after it gets hot, it acts like it is out of gas and won't start until I pull about 1,500 times.
I was down in the knee deep stuff and had to stop to raise the blades. Crank, crank, crank, varoom. I got about two strips done and one of our neighbors came over to the curb and motioned for me to turn the mower off. I shook my head , "No" a few times thinking I didn't want him to see me struggle with restarting the thing. He made a few more attempts to get me to stop. So, with a sigh, I did... (much to my dismay). He commenced to tell me to get off the boulevard and he would bring his rider over and it would take much less time for him to cut the strip. Enters -- Pride. I tried to convince him I could do it myself as my tee shirt was already soaked with female sweat (you know us females don't stink). After much persuading, I surrendered.
The neighbor bit off more than he could chew. The grass was so deep and thick it took him three mow overs and four bags of grass to get it done. In the meanwhile I was doing the front and fence side. I walked down to thank him after putting some doe in my pocket to pay him. He didn't want to take it, but when he mentioned he would volunteer to take Poppy's bike out for a spin, I strongly convinced him to take the money. And, he offered to mow again in the deep area should I ever need it. What a blessing this neighbor was for me.
ChemoSabe wants to work tomorrow. We believe he will be ready with his WBC at 1.9, platelets at 44 and his last growth factor shot today. He did get another round of blood today since his hemoglobin was down. He came home with a potassium/magnesium infuser yesterday that ran for five hours. I had to disconnect it from his port and flush it out with saline and heparin (blood thinner for the IV). It was the first time I had ever done it. I have watched the nurses do it so much it seemed simple, and it was. We had called the niece, but she was working so I had no other choice. His CRP was coming down a little yesterday, but not enough to get by without antibiotics IV. He had none today.
He feels better this afternoon and I believe it is the blood and platelets he has received this week. He has gained about 10 lb. this week, but that is a direct result of the growth factor shots. He should be losing that in 2-3 days. The early mornings have been a drain on him, along with the sitting all day in the recliners at UAMS. We are just ready to slow down.
Our baby turns 40 tomorrow. He is the old one for we are still young at heart and spirit. He even looks older that we! ha
I did not mention that our neighbor's wife is paralyzed from the neck down and he still helps out people in our neighborhood. He works a full time job and takes care of her. She had an aneurysm last year and was informed she could take the risk of it bursting or have surgery with a risk of being paralyzed the rest of her life. She took the latter. He gets her out often for trips and just being in the yard. She was an avid gardener.
So, in closing -- I always thought the word, neighbor meant something special, but it 'only' means someone living near one another. Our neighbor on our other side has only given us grief and seems to be more intent on that when he found out ChemoSabe had cancer. Isn't that abnormal? That's another Paul Harvey story. He is what we call a real ___________... (horse's patooty). So, be a good neighbor when you see someone in need. I will be doing more of that myself.
Please continue to pray for our MM friends and for ChemoSabe. They are all doing so well in their recovery and especially with their attitude. They remain humorous and uplifting.
We love you... even if some of you are long distance neighbors.
Good day and Love -- Pepper
Sunday, August 24, 2008
Abstain -- Word for the Day -- Sunday, August 24, 2008
Abstain
DEFINITION: (verb) to refrain, to hold back.
My, my, my -- where did the weekend go? I find myself even wondering, did I see ChemoSabe all weekend? Friday -- my day off, started out with taking ChemoSabe to UAMS and arriving at 8:00 after dropping the Tahoe off at the dealership for that sun roof leak. After getting fluids and discovering WBC was 0.05, we knew we were in for a full day. We played the waiting game from pharmacy for the Lovenox (blood thinner). If you remember, that is the med I have in the frig which consists of 15 syringes. After about an hour I had a chemo light bulb of an idea. I asked the RN if I could just give him the shots at home each day to save him time and use up our supply. Hey, we're outta there. After I dropped him off to the recliner and made a quick lunch, I was off again for more errands. I got home at 3:00 p.m.
Saturday was an even busier day for him. He took himself in again as I had to take the Tahoe for new tires. He got there again at 8:00 and got home at 3:00. His WBC yesterday was 0.09 with platelets being at 28. He got two rounds of fluid and blood along with his third growth factor shot. As you can tell, he is coming up very, very slowly.
As I waited for the Tahoe, I vacuumed the downstairs, rearranged the den, washed, blew leaves off the driveway, waxed the foyer and bathed three dogs. All the while I was praying the phone would ring and I could go after my vehicle. That would give me an excuse to take a break. After that I put on a pot of beans and made a pan of cornbread. Hmmmm Mmmmmmm
ChemoSabe has been crabby all week. I believe he is just aggravated with the continuous daily labs and the long periods of waiting. He was in a better mood when I went with him on Friday and I thought maybe that was the problem. I seriously believe it is his low counts, his tiredness and his inability to do what he wants to do when he wants to do it. I am at that point myself. We can't plan anything because of the daily trips and because he is so neutrapenic. Tonight he held up one finger indicating he would be up in one day... I think it will be more like three.
His WBC today was 0.17 with platelets at 37. Today he got blood, platelets and two bags of saline along with an antibiotic drip. His CRAP (CRP) is up to 65 jumping from 47 yesterday.
Get this -- In August 2000, Poppy had his artificial hip put in. August 24, 2005 he had a triple bypass. August 23, 2007 - I left the job I totally loved. Next week, my baby boy turns 40 and my munchkin grandson turns 5.
With the crabbiness I have abstained from listening and remarking when he zones in. I know it is just his meds or how bad he feels. I believe that is why I have been working so hard at the house. Would you call that avoiding? It seems nothing makes him happy right how. I have been fixing his favorite foods and he isn't eating them. Claims they have a bad taste or he isn't hungry.
Again, today, he took himself. I got up at 6:30 a.m. and couldn't rest without him here, so I took Woody out of the cage and wheeled it out to the deck and got the power washer. After that I didn't see any reason why I shouldn't do the gutters and the two decks we missed a couple of weeks ago. When I moved the cage back in, I decided to rearrange the sunroom. Had to put the power washer up and since I was at the front drive, I might as well do the front gutters. Did that and got crud all over the drive, so there you have it, I did half the driveway. Thought I would check out the sunroof to see if the leak was fixed, so I squirted the Tahoe and ended up washing the whole thing --- IN THE RAIN! Now I'm thinking.... Is this day ever going to end? I washed the landscaping bricks and finished up with putting leather cleaner on my seats.
ChemoSabe came home for a nap, but he couldn't abstain from coming out and trying to clean his truck up a bit. He was out there about 20 minutes and couldn't take it. He got light headed from folding some shop towels I washed for him the other day. I think he is fudging on some of the honey-do chores? Don't you?
We have a doctor's appt tomorrow and I somehow hope they tell us the second stem cell transplant won't be until after the first of the year. Yes, one reason is insurance, but the main reason is to get him back on track at work, at home, personally, physically and Poppically. I MISS POPPY! He was never crabby.
POPPY --- COME HOME!!!!! PLEASE.
My cousin and her husband are doing their yearly visit down here next week from Indiana. We also do something together with my aunt and uncle. It is hard for us to plan anything when we don't know what level he will be. I am ready to ride. Just get on those things and ride like hell. Ride like there is no coming back. Varooooooooommmmm!
Well.... I am rambling, so I am going to call it a night and get in bed before 9:30. Can you blieve it?
Good night and love --- Pepper (Turnip)
DEFINITION: (verb) to refrain, to hold back.
My, my, my -- where did the weekend go? I find myself even wondering, did I see ChemoSabe all weekend? Friday -- my day off, started out with taking ChemoSabe to UAMS and arriving at 8:00 after dropping the Tahoe off at the dealership for that sun roof leak. After getting fluids and discovering WBC was 0.05, we knew we were in for a full day. We played the waiting game from pharmacy for the Lovenox (blood thinner). If you remember, that is the med I have in the frig which consists of 15 syringes. After about an hour I had a chemo light bulb of an idea. I asked the RN if I could just give him the shots at home each day to save him time and use up our supply. Hey, we're outta there. After I dropped him off to the recliner and made a quick lunch, I was off again for more errands. I got home at 3:00 p.m.
Saturday was an even busier day for him. He took himself in again as I had to take the Tahoe for new tires. He got there again at 8:00 and got home at 3:00. His WBC yesterday was 0.09 with platelets being at 28. He got two rounds of fluid and blood along with his third growth factor shot. As you can tell, he is coming up very, very slowly.
As I waited for the Tahoe, I vacuumed the downstairs, rearranged the den, washed, blew leaves off the driveway, waxed the foyer and bathed three dogs. All the while I was praying the phone would ring and I could go after my vehicle. That would give me an excuse to take a break. After that I put on a pot of beans and made a pan of cornbread. Hmmmm Mmmmmmm
ChemoSabe has been crabby all week. I believe he is just aggravated with the continuous daily labs and the long periods of waiting. He was in a better mood when I went with him on Friday and I thought maybe that was the problem. I seriously believe it is his low counts, his tiredness and his inability to do what he wants to do when he wants to do it. I am at that point myself. We can't plan anything because of the daily trips and because he is so neutrapenic. Tonight he held up one finger indicating he would be up in one day... I think it will be more like three.
His WBC today was 0.17 with platelets at 37. Today he got blood, platelets and two bags of saline along with an antibiotic drip. His CRAP (CRP) is up to 65 jumping from 47 yesterday.
Get this -- In August 2000, Poppy had his artificial hip put in. August 24, 2005 he had a triple bypass. August 23, 2007 - I left the job I totally loved. Next week, my baby boy turns 40 and my munchkin grandson turns 5.
With the crabbiness I have abstained from listening and remarking when he zones in. I know it is just his meds or how bad he feels. I believe that is why I have been working so hard at the house. Would you call that avoiding? It seems nothing makes him happy right how. I have been fixing his favorite foods and he isn't eating them. Claims they have a bad taste or he isn't hungry.
Again, today, he took himself. I got up at 6:30 a.m. and couldn't rest without him here, so I took Woody out of the cage and wheeled it out to the deck and got the power washer. After that I didn't see any reason why I shouldn't do the gutters and the two decks we missed a couple of weeks ago. When I moved the cage back in, I decided to rearrange the sunroom. Had to put the power washer up and since I was at the front drive, I might as well do the front gutters. Did that and got crud all over the drive, so there you have it, I did half the driveway. Thought I would check out the sunroof to see if the leak was fixed, so I squirted the Tahoe and ended up washing the whole thing --- IN THE RAIN! Now I'm thinking.... Is this day ever going to end? I washed the landscaping bricks and finished up with putting leather cleaner on my seats.
ChemoSabe came home for a nap, but he couldn't abstain from coming out and trying to clean his truck up a bit. He was out there about 20 minutes and couldn't take it. He got light headed from folding some shop towels I washed for him the other day. I think he is fudging on some of the honey-do chores? Don't you?
We have a doctor's appt tomorrow and I somehow hope they tell us the second stem cell transplant won't be until after the first of the year. Yes, one reason is insurance, but the main reason is to get him back on track at work, at home, personally, physically and Poppically. I MISS POPPY! He was never crabby.
POPPY --- COME HOME!!!!! PLEASE.
My cousin and her husband are doing their yearly visit down here next week from Indiana. We also do something together with my aunt and uncle. It is hard for us to plan anything when we don't know what level he will be. I am ready to ride. Just get on those things and ride like hell. Ride like there is no coming back. Varooooooooommmmm!
Well.... I am rambling, so I am going to call it a night and get in bed before 9:30. Can you blieve it?
Good night and love --- Pepper (Turnip)
Wednesday, August 20, 2008
Resilient -- Word for the Day -- Wednesday, August 20, 2008
Resilient
DEFINITION: (adjective) able to recover from difficulty.
"Why count your blessings when you can complain?" What a week it has been.
ChemoSabe has wanted to drive (drag) himself to UAMS each day this week as his WBC and platelets begin to fall. Then he drags himself home to the recliner. I take him lunch while he is still getting fluids and monitoring of blood pressure and waiting for daily lab results. He was there from 8:30 a.m. to 2:30 p.m. today and received two units of fluid.
WBC -- .50 (range 3.00 to 12.00); Platelets -- 83 (range 150-500); CRP (crap) 16.10 (range 0-10). So you see, he is now neutrapenic. He began the growth factor shots today and the Lovenox (blood thinner) was reduced to 40 cc from 140 cc. He started blood pressure med to 'bring' his blood pressure up. If you recall, when he did the first round of chemo his blood pressure was too low. Today it was 74-20. Too, too low.
He has had major problems this week with cramps in his calves. It only starts after he gets home and in the recliner or in bed. It is unbearable. I gave him a pain pill Monday night and last night it was two pain pills when I got home and then an Ativan at 10:00 p.m. The APN is claiming that is what caused his BP to drop, so we can't do the Ativan anymore. They suggested the Ativan because it cured the nausea he has had since the transplant. They also prescribed another pain aid today. Go figure!
He has not had the cramps tonight. Last night he hurt so bad he had me go to the store to get bananas to regulate his potassium. He didn't even eat dinner last night. You know now he was in pain. I finally got up at 11:00 and went downstairs to the couch for the evening. I found myself waking up to see if I could hear him fumbling around. Ain't that just like a man? Can't sleep with 'em; can't sleep without 'em.
I left the Tahoe out of the garage last evening so he could put his truck in since it was raining bad when he got home. When I went out to go to work it was raining heavily. Remember I told you a few weeks ago about us riding around in the rain and the sun roof leaked? Well, my console was flooded and the rain was pouring out of the rear air controls above the rear view mirror. The headliner was as wet as a soaked rag. I put three hand towels around the edges of the sun roof, but it didn't help. My pants were even wet when I got to work. I have an appointment to take it in on Friday.
This is where the 'Word for the Day' comes in. Resilient -- ChemoSabe continues on with his survival in being strong to take himself in. God continues to play tricks on us (sun roof) to keep our minds occupied.
As I was taking his lunch up, he called and advised the APN needed to talk to me. I was on the first floor. When I got up there and asked for her, she had gone to lunch. I was under the gun at work for a big project. ChemoSabe was irritated for having to be there for so long. So, I ended up going back to work and the APN called me. It seems everything we have done this week has been a 'hurry up and wait' game.
Yes, I am complaining, BUT I am also counting my blessings because I see a light at the end of a tunnel. When it gets rough, I just look at the photos I have on my desk at work and here at the house and remember Poppy. I count my blessings because he is clean. It may get tougher before the weekend with his counts dropping, but I see the results from Billy and other patients and my spirits are lifted. AND, the other patients get to visit with ChemoSabe in the rooms and share stories.
He feels better this evening as the pain has not come back. I truly believe he was getting too much blood thinner. BUT, I ain't no doctor.
We got an email from Billy and he thinks he will be going home tomorrow for a few weeks. He is still weak, but he looks good in color and health. He has gotten some of his reports back and they are good. He is resilient.
My body, this week, has not been so resilient. I am worn out. I have washed every night this week and I paid bills tonight. I have brought home work a couple of nights and I am running out of hours. (whine) The rain has settled in again. I am in the garage tonight.
God is so good to us and our families. It is true --- He doesn't give us more than we can handle.
Good night and love -- Pepper
DEFINITION: (adjective) able to recover from difficulty.
"Why count your blessings when you can complain?" What a week it has been.
ChemoSabe has wanted to drive (drag) himself to UAMS each day this week as his WBC and platelets begin to fall. Then he drags himself home to the recliner. I take him lunch while he is still getting fluids and monitoring of blood pressure and waiting for daily lab results. He was there from 8:30 a.m. to 2:30 p.m. today and received two units of fluid.
WBC -- .50 (range 3.00 to 12.00); Platelets -- 83 (range 150-500); CRP (crap) 16.10 (range 0-10). So you see, he is now neutrapenic. He began the growth factor shots today and the Lovenox (blood thinner) was reduced to 40 cc from 140 cc. He started blood pressure med to 'bring' his blood pressure up. If you recall, when he did the first round of chemo his blood pressure was too low. Today it was 74-20. Too, too low.
He has had major problems this week with cramps in his calves. It only starts after he gets home and in the recliner or in bed. It is unbearable. I gave him a pain pill Monday night and last night it was two pain pills when I got home and then an Ativan at 10:00 p.m. The APN is claiming that is what caused his BP to drop, so we can't do the Ativan anymore. They suggested the Ativan because it cured the nausea he has had since the transplant. They also prescribed another pain aid today. Go figure!
He has not had the cramps tonight. Last night he hurt so bad he had me go to the store to get bananas to regulate his potassium. He didn't even eat dinner last night. You know now he was in pain. I finally got up at 11:00 and went downstairs to the couch for the evening. I found myself waking up to see if I could hear him fumbling around. Ain't that just like a man? Can't sleep with 'em; can't sleep without 'em.
I left the Tahoe out of the garage last evening so he could put his truck in since it was raining bad when he got home. When I went out to go to work it was raining heavily. Remember I told you a few weeks ago about us riding around in the rain and the sun roof leaked? Well, my console was flooded and the rain was pouring out of the rear air controls above the rear view mirror. The headliner was as wet as a soaked rag. I put three hand towels around the edges of the sun roof, but it didn't help. My pants were even wet when I got to work. I have an appointment to take it in on Friday.
This is where the 'Word for the Day' comes in. Resilient -- ChemoSabe continues on with his survival in being strong to take himself in. God continues to play tricks on us (sun roof) to keep our minds occupied.
As I was taking his lunch up, he called and advised the APN needed to talk to me. I was on the first floor. When I got up there and asked for her, she had gone to lunch. I was under the gun at work for a big project. ChemoSabe was irritated for having to be there for so long. So, I ended up going back to work and the APN called me. It seems everything we have done this week has been a 'hurry up and wait' game.
Yes, I am complaining, BUT I am also counting my blessings because I see a light at the end of a tunnel. When it gets rough, I just look at the photos I have on my desk at work and here at the house and remember Poppy. I count my blessings because he is clean. It may get tougher before the weekend with his counts dropping, but I see the results from Billy and other patients and my spirits are lifted. AND, the other patients get to visit with ChemoSabe in the rooms and share stories.
He feels better this evening as the pain has not come back. I truly believe he was getting too much blood thinner. BUT, I ain't no doctor.
We got an email from Billy and he thinks he will be going home tomorrow for a few weeks. He is still weak, but he looks good in color and health. He has gotten some of his reports back and they are good. He is resilient.
My body, this week, has not been so resilient. I am worn out. I have washed every night this week and I paid bills tonight. I have brought home work a couple of nights and I am running out of hours. (whine) The rain has settled in again. I am in the garage tonight.
God is so good to us and our families. It is true --- He doesn't give us more than we can handle.
Good night and love -- Pepper
Monday, August 18, 2008
Digress -- Word for the Day -- Monday, August 18, 2008
Digress
DEFINITION: (verb) to wander from the main path or the main topic.
Digress should have been the very first word we (I) used at the beginning, because you can attest by my writings that I am prone to do just that! ha
WBC today -- 2.57 (2.0 is low); Platelets 172 (20 is a worry stage, but 150-500 is range).
ChemoSabe had a very, very long day. He was at UAMS by 8:30 for labs and fluids. Surprisingly, he did not have to have blood today. He got out of there by noon and was late for a Data Manager meeting. What is that? We have been wondering just that the last two weeks. We missed our last appointment. Are you ready for this one?
Data Manager is someone that will ask you for your notebook. The notebook they gave us in the beginning with a lot of medical tabs. I had already made my own with tabs for labs, appointments, contacts, Schema, etc. Well, they want you to give them ALL the notes you have taken from the beginning along with the medication lists with dates, quantities, etc. Your 'Diary'. They want you to copy it for them. Oh my gosh, my binder is humongous!!! Well, I am not copying it for them as I am too busy with my job. ChemoSabe told them he would bring our notebook, BUT do I want to part with my original? I think I will just jot down our blog address and give it to them! Wanna dare me?
I see a very tired man today. I did not go with him as I needed to work. Monday is my busiest day, BUT I had told him if he felt bad I would take off. He trudged on up there alone and I met him at 2:30 for the 3:00 p.m. appointment. He was able to eat lunch. He has felt nauseated since late yesterday afternoon. The nurses and I have told him the only thing that will help is Ativan. If you remember, that is also a sleep aid medication. He cannot drive while taking that. So, he has decided not to take it.
I have noticed the last few weeks his hands shaking. Sometimes it is best to observe and keep silent. Before the doctor came in, ChemoSabe was trying to explain to me his unusual feelings. He explained one symptom as jitters. When we talked more we agreed it was more of shakiness. The doctor informs us it is normal and is a combination of the steroids last week and the Melphalan (the massive chemo injection).
We had a different doctor this time. We REALLY like him. He physically checked ChemoSabe from head to toe. We have not had that before in clinic. He was very informative about what we had already endured, where we are and where we are headed. I will give you a brief run down.
ChemoSabe has no indication of Multiple Myeloma in his system! He has no Protein, meaning he has nothing in his organs and didn't from the get go. The only evidence of MM is the lesions which only one has diminished in size. The lesions are eaten out areas in the bone which will have to heal through more chemo therapy and transplants.
The next step -- He will still be going for labs every day for the next two to three weeks. His WBC will be dropping massively this week, beginning tomorrow. He will be in the mask (white -- no black available) stage and cannot touch anyone or just about anything. He will be HIGHLY susceptible to infection. This is a critical time.
We will see the doctor again next Monday for an overview and another schedule. The second required stem cell transplant will be within a six week to six month time frame. They are focusing on an eight week schedule. The doc tells us that Myeloma is very tricky. It plays games thinking it is smarter than medicine. It will be thinking the patient wants to wait as long as possible because the first transplant has drained the body. But, UAMS thinks aggressively so they want to go back as quickly as possible and do the second transplant. So, we are thinking the second will be around the last week of October.
Please pray for ChemoSabe this week for his strength, encouragement, endurance and the nausea.
He looks so vulnerable as he sleeps in the recliner. He looks so drained. AND, with that bald head and perfect skin, he looks so much like a baby. I did feel what I thought was stubble this morning. He laughed and said, "Get outta here", when I told him he needed to shave. He has not shaved in six weeks. Hasn't needed to. His eyebrows are almost gone completely and I believe some of his eyelashes are missing.
Please pray for me as I continue to see the changes in him physically and mentally, because I sure miss Poppy. I miss seeing him, touching him and smelling him as the treatments, especially the chemo, has taken a lot of that from him and from me.
And, please continue to pray for our other MM friends. I heard from Rog today, from OKC and they got back yesterday. He is due for heart catherization on the 20th and his stem cell transplant on the 25th. And, Billy, keeps on truckin'.
Oh, don't you think I did well? I did not digress much on this one!
Good night and Love -- Pepper
DEFINITION: (verb) to wander from the main path or the main topic.
Digress should have been the very first word we (I) used at the beginning, because you can attest by my writings that I am prone to do just that! ha
WBC today -- 2.57 (2.0 is low); Platelets 172 (20 is a worry stage, but 150-500 is range).
ChemoSabe had a very, very long day. He was at UAMS by 8:30 for labs and fluids. Surprisingly, he did not have to have blood today. He got out of there by noon and was late for a Data Manager meeting. What is that? We have been wondering just that the last two weeks. We missed our last appointment. Are you ready for this one?
Data Manager is someone that will ask you for your notebook. The notebook they gave us in the beginning with a lot of medical tabs. I had already made my own with tabs for labs, appointments, contacts, Schema, etc. Well, they want you to give them ALL the notes you have taken from the beginning along with the medication lists with dates, quantities, etc. Your 'Diary'. They want you to copy it for them. Oh my gosh, my binder is humongous!!! Well, I am not copying it for them as I am too busy with my job. ChemoSabe told them he would bring our notebook, BUT do I want to part with my original? I think I will just jot down our blog address and give it to them! Wanna dare me?
I see a very tired man today. I did not go with him as I needed to work. Monday is my busiest day, BUT I had told him if he felt bad I would take off. He trudged on up there alone and I met him at 2:30 for the 3:00 p.m. appointment. He was able to eat lunch. He has felt nauseated since late yesterday afternoon. The nurses and I have told him the only thing that will help is Ativan. If you remember, that is also a sleep aid medication. He cannot drive while taking that. So, he has decided not to take it.
I have noticed the last few weeks his hands shaking. Sometimes it is best to observe and keep silent. Before the doctor came in, ChemoSabe was trying to explain to me his unusual feelings. He explained one symptom as jitters. When we talked more we agreed it was more of shakiness. The doctor informs us it is normal and is a combination of the steroids last week and the Melphalan (the massive chemo injection).
We had a different doctor this time. We REALLY like him. He physically checked ChemoSabe from head to toe. We have not had that before in clinic. He was very informative about what we had already endured, where we are and where we are headed. I will give you a brief run down.
ChemoSabe has no indication of Multiple Myeloma in his system! He has no Protein, meaning he has nothing in his organs and didn't from the get go. The only evidence of MM is the lesions which only one has diminished in size. The lesions are eaten out areas in the bone which will have to heal through more chemo therapy and transplants.
The next step -- He will still be going for labs every day for the next two to three weeks. His WBC will be dropping massively this week, beginning tomorrow. He will be in the mask (white -- no black available) stage and cannot touch anyone or just about anything. He will be HIGHLY susceptible to infection. This is a critical time.
We will see the doctor again next Monday for an overview and another schedule. The second required stem cell transplant will be within a six week to six month time frame. They are focusing on an eight week schedule. The doc tells us that Myeloma is very tricky. It plays games thinking it is smarter than medicine. It will be thinking the patient wants to wait as long as possible because the first transplant has drained the body. But, UAMS thinks aggressively so they want to go back as quickly as possible and do the second transplant. So, we are thinking the second will be around the last week of October.
Please pray for ChemoSabe this week for his strength, encouragement, endurance and the nausea.
He looks so vulnerable as he sleeps in the recliner. He looks so drained. AND, with that bald head and perfect skin, he looks so much like a baby. I did feel what I thought was stubble this morning. He laughed and said, "Get outta here", when I told him he needed to shave. He has not shaved in six weeks. Hasn't needed to. His eyebrows are almost gone completely and I believe some of his eyelashes are missing.
Please pray for me as I continue to see the changes in him physically and mentally, because I sure miss Poppy. I miss seeing him, touching him and smelling him as the treatments, especially the chemo, has taken a lot of that from him and from me.
And, please continue to pray for our other MM friends. I heard from Rog today, from OKC and they got back yesterday. He is due for heart catherization on the 20th and his stem cell transplant on the 25th. And, Billy, keeps on truckin'.
Oh, don't you think I did well? I did not digress much on this one!
Good night and Love -- Pepper
Saturday, August 16, 2008
Ephermeral -- Word for the Day -- Saturday, August 16, 2008
Ephemeral
DEFINITION: (adjective) quickly disappearing; transient.
Had the transplant on Thursday, August 14 at 11:00. ChemoSabe got to hold all the babies in his hands. All 2.1 million of them. It took about 10 minutes to put them in. He has 19.2 million in storage. He had to suck on peppermints while they were going in to deter the aftertaste. The lady next to him claimed "sweet corn', but ChemoSabe claimed "roasted corn". We celebrated by going to Chili's to eat. He had sweet tea, I had unsweet. Gosh... aren't we boring?
Ephemeral is the cancer that dares to eat away at ChemoSabe's body. His reports show no evidence of MM with little change in his lesions except for one that is shrinking. He still has two tiny fractures in the T7 and T9 location of his back. That is the lower spine just above the kidney area. AND, he still goes like the Ever Ready bunny.
Tomorrow we are looking at the possibility of blood. His counts are going down slowly except for the Platelets which are still 248 (remember, 20 is the low we worry about). He got to UAMS this morning at 8:30 and didn't get home until 12:00. He was a bit slow to start the day because of energy, but quick to get up at 6:00 a.m. because the steroids are still in his system. Friday was the last day for those.
He didn't sit down when he got home. He wiped down his truck a little and then we went shopping. When we got home he hinted he wanted to ride, but after thinking about it he hit the recliner around 7:00 p.m. and then up to bed at 10:00. He didn't even make it through a movie I had rented.
His energy is Ephemeral. I believe by Monday his WBC will be close to 3.00 or 2.00, with 2.00 being our concern. The nurses have told him to wear his mask at the hospital, but I don't believe he is. I haven't gone with him the last two days, but I will probably need to take him tomorrow.
Wingman and Shooter surprised us with two hats this week. It was such a thrill. ChemoSabe's has "ChemoSabe", of course, on the front and mine has "Tonto". Both have the word "Persevere" on the back. If you guys remember, that was the very first word I used in our blog. Aren't these two special?
Tomorrow is to be a wonderful day for riding, but I do not see it coming. I see his hinney dragging and then coming home and hitting the recliner again. I am fixing a pot of beans with cornbread, so that will be enough to convince him to stay in-house.
I have been double cleaning and preparing for the low WBC. I spray the counters every night with PineSol. This week will have to lock the kids out of the house and not let them past the sun room. Pete tried to bring in a Katydid again tonight. He thought he was going to take it straight to the reclincer where ChemoSabe was asleep, but I blocked the door.
I had my stress test yesterday and the heart doctor confirmed I am heartless. Everything is fine and I don't need an oil change. I didn't ask questions, I just told him I was happy to hear the news and headed out. God is good... I didn't want to wait around for that now common saying amoung my doctors, "At your age and weight." Do I pay they for that?
Please pray for us this week in our visit to the Big Doc. Also, pray for ChemoSabe's strength and energy as if he has just an ounce of it he will be working. Pray he will have the wisdom to know when he can't when he thinks he can. He will come down fast and will probably take 3-4 days to come back up.
He had some heavy chemo skin aroma this week and some more unusual aroma after the stem cell induction. An aura of bleach. It seemed to be coming out of his pores. Even after he took a shower, it could not be erased. Yesterday and today were much better.
He has not had any problems with blisters, sores or bleeding in his mouth. The reason for the massive intake of ice during the chemo was to prevent those side effects. Looks like it worked. He also sucked on lemon drops.
He is just blessed that he has come so far in so little time with very little side effects. He is still having the hiccups, but I foresee those will be Ephemeral by tomorrow.
We spent a lot of our afternoon together and I could see the weakness in his eyes. He looks sad, but he was happy. I see his eyebrows vanishing and I believe his eyelashes are dropping. I do not tell him this. Next week, everything will probably be gone completey because of the big dose of chemo on Wednesday. We spoke to a man today that says when his sister-in-law lost her white hair to chemo it came back massive black. Can you imagine ChemoSabe with massive black hair? Oh my.....Would I have to?lllllll..... No, I am staying white. I did the blond to black when I was in high school. Won't ever put anything on it again. He will just have to tell people he married an older woman..
Well... starting that rambling thing again.
Thank you Aunt Nornie for the card, Thank you Wingman and Shooter for the hats, Thank you Billy and Sherry for the T-Shirts, Thank you Son for checking on us and making us call you when we get home, AND, Thank you God for taking care of us every day!
Good night and Love --- Pepper (Tonto)
p.s. What do you think about this tatoo? Lone Ranger and Tonto on my outer calf with ChemoSabe and Tonto captioned underneath? OR, should I just stick with that Turnip thing? ha
DEFINITION: (adjective) quickly disappearing; transient.
Had the transplant on Thursday, August 14 at 11:00. ChemoSabe got to hold all the babies in his hands. All 2.1 million of them. It took about 10 minutes to put them in. He has 19.2 million in storage. He had to suck on peppermints while they were going in to deter the aftertaste. The lady next to him claimed "sweet corn', but ChemoSabe claimed "roasted corn". We celebrated by going to Chili's to eat. He had sweet tea, I had unsweet. Gosh... aren't we boring?
Ephemeral is the cancer that dares to eat away at ChemoSabe's body. His reports show no evidence of MM with little change in his lesions except for one that is shrinking. He still has two tiny fractures in the T7 and T9 location of his back. That is the lower spine just above the kidney area. AND, he still goes like the Ever Ready bunny.
Tomorrow we are looking at the possibility of blood. His counts are going down slowly except for the Platelets which are still 248 (remember, 20 is the low we worry about). He got to UAMS this morning at 8:30 and didn't get home until 12:00. He was a bit slow to start the day because of energy, but quick to get up at 6:00 a.m. because the steroids are still in his system. Friday was the last day for those.
He didn't sit down when he got home. He wiped down his truck a little and then we went shopping. When we got home he hinted he wanted to ride, but after thinking about it he hit the recliner around 7:00 p.m. and then up to bed at 10:00. He didn't even make it through a movie I had rented.
His energy is Ephemeral. I believe by Monday his WBC will be close to 3.00 or 2.00, with 2.00 being our concern. The nurses have told him to wear his mask at the hospital, but I don't believe he is. I haven't gone with him the last two days, but I will probably need to take him tomorrow.
Wingman and Shooter surprised us with two hats this week. It was such a thrill. ChemoSabe's has "ChemoSabe", of course, on the front and mine has "Tonto". Both have the word "Persevere" on the back. If you guys remember, that was the very first word I used in our blog. Aren't these two special?
Tomorrow is to be a wonderful day for riding, but I do not see it coming. I see his hinney dragging and then coming home and hitting the recliner again. I am fixing a pot of beans with cornbread, so that will be enough to convince him to stay in-house.
I have been double cleaning and preparing for the low WBC. I spray the counters every night with PineSol. This week will have to lock the kids out of the house and not let them past the sun room. Pete tried to bring in a Katydid again tonight. He thought he was going to take it straight to the reclincer where ChemoSabe was asleep, but I blocked the door.
I had my stress test yesterday and the heart doctor confirmed I am heartless. Everything is fine and I don't need an oil change. I didn't ask questions, I just told him I was happy to hear the news and headed out. God is good... I didn't want to wait around for that now common saying amoung my doctors, "At your age and weight." Do I pay they for that?
Please pray for us this week in our visit to the Big Doc. Also, pray for ChemoSabe's strength and energy as if he has just an ounce of it he will be working. Pray he will have the wisdom to know when he can't when he thinks he can. He will come down fast and will probably take 3-4 days to come back up.
He had some heavy chemo skin aroma this week and some more unusual aroma after the stem cell induction. An aura of bleach. It seemed to be coming out of his pores. Even after he took a shower, it could not be erased. Yesterday and today were much better.
He has not had any problems with blisters, sores or bleeding in his mouth. The reason for the massive intake of ice during the chemo was to prevent those side effects. Looks like it worked. He also sucked on lemon drops.
He is just blessed that he has come so far in so little time with very little side effects. He is still having the hiccups, but I foresee those will be Ephemeral by tomorrow.
We spent a lot of our afternoon together and I could see the weakness in his eyes. He looks sad, but he was happy. I see his eyebrows vanishing and I believe his eyelashes are dropping. I do not tell him this. Next week, everything will probably be gone completey because of the big dose of chemo on Wednesday. We spoke to a man today that says when his sister-in-law lost her white hair to chemo it came back massive black. Can you imagine ChemoSabe with massive black hair? Oh my.....Would I have to?lllllll..... No, I am staying white. I did the blond to black when I was in high school. Won't ever put anything on it again. He will just have to tell people he married an older woman..
Well... starting that rambling thing again.
Thank you Aunt Nornie for the card, Thank you Wingman and Shooter for the hats, Thank you Billy and Sherry for the T-Shirts, Thank you Son for checking on us and making us call you when we get home, AND, Thank you God for taking care of us every day!
Good night and Love --- Pepper (Tonto)
p.s. What do you think about this tatoo? Lone Ranger and Tonto on my outer calf with ChemoSabe and Tonto captioned underneath? OR, should I just stick with that Turnip thing? ha
Wednesday, August 13, 2008
Stem Cells --- Words for the Day -- Wednesday, August 13, 2008
Mary -- these photos are for you...
Stem Cell Definition: In the time it takes you to read this sentence, more than 10 million red blood cells in your body will die. Don't be alarmed; it's natural, and stem cells in your bone marrow are constantly making enough new cells to replace the dying ones.
But, what if those blood-making cells stopped working? Without a fresh supply of red and white blood cells, you would quickly become anemic, your immune system would collapse, and without medical attention, you would die.
This could be a concern for astronauts taking long trips beyond Earth orbit. It's well known that space radiation can damage cells in astronauts' bodies. Less well understood is the specific threat to the key blood-making cells.
ChemoSabe received his big dose of chemo today. He did really well and even went to work afterward. We have discovered his WBC will take at least five days or more to drop. He is still getting the two a day gut shots blood thinner. I still have not bruised him.
He also has begun his regimen of steroids with ten a day. He was up at 4:30 a.m. ready to go. He has been very, very energetic and impatient throughout the day. The difference this time is he doesn't take the meds as before that would help him sleep. We only have to be on them until Friday, but it will take a few days for it to wear off.
He says this chemo is good because he has started his hiccuping again. I have already given him a pill to ease it. That means massive snoring tonight. I hear the couch in the den calling my name.
We got to ride a little this evening over to Sis's house and then to eat at Chili's. Wind was a bit nippy, but very enjoyable. We hope to get to ride again tomorrow night, for we fear his decline is near. He will be going to lab each morning at 9:00 and for blood and platelets when he needs it. He will also be started again on the growth factor shots. That puts more babies in the marrow to hop around.
We are happy. This week I see my husband in his attitudes, his gentleness and his compassion. I don't see him physically, yet, but give it another six months and I bet we will see the ole Poppy pop right back in shape and form.
Thank you again for everything you have done.... You are all special to us.
Good night and Love --- Pepper
Stem Cell Definition: In the time it takes you to read this sentence, more than 10 million red blood cells in your body will die. Don't be alarmed; it's natural, and stem cells in your bone marrow are constantly making enough new cells to replace the dying ones.
But, what if those blood-making cells stopped working? Without a fresh supply of red and white blood cells, you would quickly become anemic, your immune system would collapse, and without medical attention, you would die.
This could be a concern for astronauts taking long trips beyond Earth orbit. It's well known that space radiation can damage cells in astronauts' bodies. Less well understood is the specific threat to the key blood-making cells.
ChemoSabe received his big dose of chemo today. He did really well and even went to work afterward. We have discovered his WBC will take at least five days or more to drop. He is still getting the two a day gut shots blood thinner. I still have not bruised him.
He also has begun his regimen of steroids with ten a day. He was up at 4:30 a.m. ready to go. He has been very, very energetic and impatient throughout the day. The difference this time is he doesn't take the meds as before that would help him sleep. We only have to be on them until Friday, but it will take a few days for it to wear off.
He says this chemo is good because he has started his hiccuping again. I have already given him a pill to ease it. That means massive snoring tonight. I hear the couch in the den calling my name.
We got to ride a little this evening over to Sis's house and then to eat at Chili's. Wind was a bit nippy, but very enjoyable. We hope to get to ride again tomorrow night, for we fear his decline is near. He will be going to lab each morning at 9:00 and for blood and platelets when he needs it. He will also be started again on the growth factor shots. That puts more babies in the marrow to hop around.
We are happy. This week I see my husband in his attitudes, his gentleness and his compassion. I don't see him physically, yet, but give it another six months and I bet we will see the ole Poppy pop right back in shape and form.
Thank you again for everything you have done.... You are all special to us.
Good night and Love --- Pepper
Tuesday, August 12, 2008
Astute -- Word for the Day -- Tuesday, August 12, 2008
Astute
DEFINITION: (adjective) observant, intelligent, and shrewd.
Hello, Kids... I apologize for the delay in updates. It has been hectic the last couple of days. ChemoSabe was down much of the weekend and our doctor's visit and schedule was confusing and off course yesterday.
To start, I had another round of illness with severe vomiting throughout Saturday night. Oh my gosh!!! We both stayed in bed late on Sunday from exhaustion. I believe ChemoSabe was just about at his wits end with his pain and mine, too. We both got up early to make it to the doctor visit yesterday. He was walking better and I felt like poo poo. After visit with our doc we discovered she was unaware of ChemoSabe's blood clots. After advising her of the twice a day stomach injections for blood thinner she informed us the port could not be put in yesterday as scheduled because of the possibility of bleeding. We have to be off the shots for at least 24 hours before port insertion. So, we have been knocked off schedule at least one full day.
ChemoSabe had labs yesterday morning and his CRP (crap) is up to 114.60 and if you remember it usually runs 6.0. So that means he has a low grade infection. We are hoping his labs today come back with a lower reading. His platelets are still high with a 228 register for last Thursday. That is good, because they will be dropping within the next week. WBC is still at 9.0.
He did get his port inserted this afternoon with a lot less pain than before. He even made the visit by himself so I could catch up on work. Tomorrow we are scheduled early for the BIG chemo injection, Melphalan. Sounds like that yard chemical you use to kill insects, doesn't it? This will clean out EVERYTHING. Then we will have 24 hours to get the stem cell transplant. We do not have a time for that, as yet, but we know it will have to be by 9:00 a.m. Thursday. I am still thinking we ought to have a baby shower.
We also received his bone marrow biopsy report, the MRI report and the cardiac report yesterday. I will just give you a brief run down. The BMB indicates there is no myeloma in the marrow. The MRI reports there are still lesions in the same areas as before, but they have not increased in size. In fact, one on the left shoulder has decreased to 1 cm. He still has a fracture in the T7 and T9 area of his spine, but it indicates there is no concern. The left ventricle shows no indication of heart damage. NOT BAD FOR A CANCER PATIENT, huh? Looks like the first two chemo treatments has cleared everything out. This last one with the new babies just makes things more definite. Haven't we learned so much in so little time? It has just made us more astute. Now you all will be ready for tests throughout the duration.
God has really blessed us through it all. Especially with our work. We could not have made it without the release of being able to work and keep our minds occupied and busy. We could not have made it without the people we work for and with. You all have definitely come to 'BAT' for us in every shape and/or form.
Our family has been here to help us when we need to talk, when we don't want to talk and when we need those damn hard things done around the house. All we have to do is pick up the phone and they are here in minutes. Better than On-Star.
Then we have our friends to call and surprise us with news that our neighbors from H__ are putting their house up for sale. Thank you.....!!! That's another story from Paul Harvey. I will have to get back with you on that one.
It has been a very stressful last seven days as far as medical, financial, mental and physical. But, Hey... we are still here. What does that tell us? God NEVER gives us more than we can handle. Amen? Amen!
It is early, so I will take this opportunity to close out before 10:00.
Thank you for everything. Good night and Love --- Pepper
DEFINITION: (adjective) observant, intelligent, and shrewd.
Hello, Kids... I apologize for the delay in updates. It has been hectic the last couple of days. ChemoSabe was down much of the weekend and our doctor's visit and schedule was confusing and off course yesterday.
To start, I had another round of illness with severe vomiting throughout Saturday night. Oh my gosh!!! We both stayed in bed late on Sunday from exhaustion. I believe ChemoSabe was just about at his wits end with his pain and mine, too. We both got up early to make it to the doctor visit yesterday. He was walking better and I felt like poo poo. After visit with our doc we discovered she was unaware of ChemoSabe's blood clots. After advising her of the twice a day stomach injections for blood thinner she informed us the port could not be put in yesterday as scheduled because of the possibility of bleeding. We have to be off the shots for at least 24 hours before port insertion. So, we have been knocked off schedule at least one full day.
ChemoSabe had labs yesterday morning and his CRP (crap) is up to 114.60 and if you remember it usually runs 6.0. So that means he has a low grade infection. We are hoping his labs today come back with a lower reading. His platelets are still high with a 228 register for last Thursday. That is good, because they will be dropping within the next week. WBC is still at 9.0.
He did get his port inserted this afternoon with a lot less pain than before. He even made the visit by himself so I could catch up on work. Tomorrow we are scheduled early for the BIG chemo injection, Melphalan. Sounds like that yard chemical you use to kill insects, doesn't it? This will clean out EVERYTHING. Then we will have 24 hours to get the stem cell transplant. We do not have a time for that, as yet, but we know it will have to be by 9:00 a.m. Thursday. I am still thinking we ought to have a baby shower.
We also received his bone marrow biopsy report, the MRI report and the cardiac report yesterday. I will just give you a brief run down. The BMB indicates there is no myeloma in the marrow. The MRI reports there are still lesions in the same areas as before, but they have not increased in size. In fact, one on the left shoulder has decreased to 1 cm. He still has a fracture in the T7 and T9 area of his spine, but it indicates there is no concern. The left ventricle shows no indication of heart damage. NOT BAD FOR A CANCER PATIENT, huh? Looks like the first two chemo treatments has cleared everything out. This last one with the new babies just makes things more definite. Haven't we learned so much in so little time? It has just made us more astute. Now you all will be ready for tests throughout the duration.
God has really blessed us through it all. Especially with our work. We could not have made it without the release of being able to work and keep our minds occupied and busy. We could not have made it without the people we work for and with. You all have definitely come to 'BAT' for us in every shape and/or form.
Our family has been here to help us when we need to talk, when we don't want to talk and when we need those damn hard things done around the house. All we have to do is pick up the phone and they are here in minutes. Better than On-Star.
Then we have our friends to call and surprise us with news that our neighbors from H__ are putting their house up for sale. Thank you.....!!! That's another story from Paul Harvey. I will have to get back with you on that one.
It has been a very stressful last seven days as far as medical, financial, mental and physical. But, Hey... we are still here. What does that tell us? God NEVER gives us more than we can handle. Amen? Amen!
It is early, so I will take this opportunity to close out before 10:00.
Thank you for everything. Good night and Love --- Pepper
Saturday, August 9, 2008
Iconoclast -- Word for the Day -- Saturday, August 9, 2008
Iconoclast
DEFINITION: (noun) someone who attacks traditional beliefs or institutions.
I don't believe I will even try to use this word in a sentence. If I did, people I know would probably look at me and say what Big E says sometimes to get a reaction -- "What tha?" I would probably use the words 'black sheep in family', 'traitor' or something someone would understand! ha
Has been a difficult weekend thus far for us both. ChemoSabe has had great difficulty getting up and around and the lying down or sitting in the recliner is hurting him just as much as his leg. He is not one to sit for very long. He has been down much of the time except for the trips to UAMS. One good thing is he is not asking for pain medication and hasn't since Wednesday night. Another good thing, too, about his being down -- I am getting a lot of house work done.
I did get him out for a bit late this afternoon and took him down to Sonic to try out the new Fried Ice Cream Blast. It has caramel mixed in it with cinnamon chips. We love Caramel in ice cream but this didn't burst our bubble. But, it was good to get out. We were getting cabin fever. When we got back home I fixed BBQ chicken legs on the grill. That is one of our favorites. Then sister and her husband came over and we sat out on the deck and listened to the crickets and frogs.
It is raining here now and looks like we will have thunderstorms throughout the night and tomorrow, also. We need it. Another good thing about ChemoSabe being is we would have probably been out somewhere on the bikes this weekend and got caught in the weather.
Twice a day stomach shots are going quite well. The RNs were good about bruising his stomach. We switch sides with left in the morning and right at night. Opposite than what I do Parker. The nurse that taught me on Thursday put a quarter size bruise on him. I have given four shots already and you can't even see where I have put them. Gosh, I'm good. He does flinch a bit when I insert the needle, but he isn't complaining about stinging or anything. With this stuff you have to put it in REAL slow or it burns. I haven't burned him once.
BUT... speaking of burns. Remember when I patted myself on the back the other night because I took two hand warmers from the motorcycle gear and wrapped them around his leg for the pain, when he thought it was a pulled muscle. Well, he has two blisters there now about the size of nickels. I feel so bad. But, it ain't my fault. I tried to tell him it was a blood clot and I only put those pads on there for a pulled muscle... Know what I mean?
We are hoping the blood clots don't interfere with the transplant schedule. I believe ChemoSabe will be very disappointed if that happens. I know I will. We need the rest, but we are geared up and excited about these new babies. I still think we ought to have a baby shower.
Well, Kids... It is late and we had a long day. I hope to get a lot of work done tomorrow. I rearranged the dining room last night. I still haven't gotten to Woody's cage.
Tomorrow is Sunday --- You guys try to get to church.
Good night and Love --- Pepper
DEFINITION: (noun) someone who attacks traditional beliefs or institutions.
I don't believe I will even try to use this word in a sentence. If I did, people I know would probably look at me and say what Big E says sometimes to get a reaction -- "What tha?" I would probably use the words 'black sheep in family', 'traitor' or something someone would understand! ha
Has been a difficult weekend thus far for us both. ChemoSabe has had great difficulty getting up and around and the lying down or sitting in the recliner is hurting him just as much as his leg. He is not one to sit for very long. He has been down much of the time except for the trips to UAMS. One good thing is he is not asking for pain medication and hasn't since Wednesday night. Another good thing, too, about his being down -- I am getting a lot of house work done.
I did get him out for a bit late this afternoon and took him down to Sonic to try out the new Fried Ice Cream Blast. It has caramel mixed in it with cinnamon chips. We love Caramel in ice cream but this didn't burst our bubble. But, it was good to get out. We were getting cabin fever. When we got back home I fixed BBQ chicken legs on the grill. That is one of our favorites. Then sister and her husband came over and we sat out on the deck and listened to the crickets and frogs.
It is raining here now and looks like we will have thunderstorms throughout the night and tomorrow, also. We need it. Another good thing about ChemoSabe being is we would have probably been out somewhere on the bikes this weekend and got caught in the weather.
Twice a day stomach shots are going quite well. The RNs were good about bruising his stomach. We switch sides with left in the morning and right at night. Opposite than what I do Parker. The nurse that taught me on Thursday put a quarter size bruise on him. I have given four shots already and you can't even see where I have put them. Gosh, I'm good. He does flinch a bit when I insert the needle, but he isn't complaining about stinging or anything. With this stuff you have to put it in REAL slow or it burns. I haven't burned him once.
BUT... speaking of burns. Remember when I patted myself on the back the other night because I took two hand warmers from the motorcycle gear and wrapped them around his leg for the pain, when he thought it was a pulled muscle. Well, he has two blisters there now about the size of nickels. I feel so bad. But, it ain't my fault. I tried to tell him it was a blood clot and I only put those pads on there for a pulled muscle... Know what I mean?
We are hoping the blood clots don't interfere with the transplant schedule. I believe ChemoSabe will be very disappointed if that happens. I know I will. We need the rest, but we are geared up and excited about these new babies. I still think we ought to have a baby shower.
Well, Kids... It is late and we had a long day. I hope to get a lot of work done tomorrow. I rearranged the dining room last night. I still haven't gotten to Woody's cage.
Tomorrow is Sunday --- You guys try to get to church.
Good night and Love --- Pepper
Thursday, August 7, 2008
Incisive -- Word for the Day -- Thursday, August 7, 2008
Incisive
DEFINITION: (adjective) expressed clearly and directly.
Long, long, long day! Arrived at UAMS at 6:30 a.m. and got home at 5:00 p.m.
Good news: WBC today -- 9.0 (2.0 being the low). Platelets -- 228 (20 being the low).
Bad news: The pulled muscle in ChemoSabe's calf (he thought) was in fact a blood clot. After the MRI first thing this morning we went over to the MM Clinic and spoke with a Triage nurse. She sat us up immediately with a Vascular Doppler, even before our next scheduled test. It revealed blood clots in both legs.
From my plan yesterday, we had decided I would drop ChemoSabe off at MRI and go on in to work since the MRI is a two hour test. After the cane deal last evening and then seeing how ChemoSabe could NOT walk this morning I decided to stay with him and we got a wheelchair as soon as we arrived. We kept the wheelchair until we left.
Our route for the day was -- hospital basement, MM clinic two buildings over, back to hospital first floor, over to Outpatient 3rd floor (building next to hospital), down to Outpatient 2nd floor and then over to first floor Infusion which is one building between the Outpatient and MM Clinic. We had originally parked at the hospital, but while he was in MRI I moved the Tahoe over to Outpatient deck which is covered. We were expecting rain and it is closer to MM Clinic and Infusion.
The treatment for the blood clots, which were the direct result of taking the Thalidomide, is two gut shots every 12 hours of Lovenox which is a blood thinner. I will be giving him those shots daily for 30 days. Here is the kicker --- remember yesterday we discussed the insurance problem? When we got to Outpatient Pharmacy we were advised the Lovenox was -- Are you ready? $4,615.26. The pharmacist was as dumbfounded as we. He felt so bad he asked us for the insurance card and he would go to the back. We sat down. Well, I did. ChemoSabe was in the wheelchair, but I believe I saw him almost fall out of it.
We waited for about 20 minutes and they called our name. I asked ChemoSabe to stay put. I could see the "what are we going to do now?" look in his eyes. I had already told the pharmacist that we could not leave without it. Well, they advised us insurance would pay for 14 prefilled syringes. That means seven days worth. I could come back next Wednesday to see if they would pay for another 14 and we would have to try it a week-at-a- time. So, I took the brown bag and sucked in my breath and asked the big question -- "How much?"... Are you ready? $50.00. I didn't ask any more questions. I just told the Pharmacist I loved him and paid cash and walked away -- QUICKLY! My momma always told me, "Don't look a gift horse in the mouth".
Another instruction we received for treatment -- ChemoSabe can basically only get up to go to the restroom until Monday when we go back for our original doctor's appointment, except for the daily visits over the weekend. He has been asleep all afternoon and evening except for dinner of which he ate fairly well. We also have our appointment set up for the big dose of chemo on Tuesday at 9:00 a.m. This is the one that will wipe him out.
I do not know what we are going to do about the rest of the year's worth of medical expenses for him. I do know we cannot worry about it. We have to put it in God's hands. Therein lies my problem. Those of you familiar with me know I am a control freak. I want the answers before the question is asked. I want the solution before the problem arises. I know we probably have several options, but I feel I am running out of gas and it is a problem I just don't want to pursue right now. I am too focused on his health instead of finances. Let's take care of his problem before I have to worry about paying for it. That is more important to me right now. Don't get me wrong, I am not irresponsible, I just need to give it to God. It is very difficult for me to be humble, so you guys are going to have to help me with that. Teach me to be humble and ask Him to give me peace. Give me the strength to focus on ChemoSabe only. Pray for me that I will give up my CONTROL! Again, those of you knowing me, know that will be a hard task for me. I am such a freak I feel I am the only one that can solve these problems. I am so selfish I will not ask Him to help me. Yes, I am stubborn and hardheaded, too. Which reminds me of one of my favorite songs a long, long time ago... Mac Davis -- "Oh, Lord it's hard to be humble when you are perfect in every way. I can't wait to look in the mirror because I get better looking each day. To know me is to love me. I must be one hell of a (wo)man. Oh, Lord it's hard to be humble, but I'm doing the best that I can."
Well, Kids -- I am closing on that "music" note. We have a busy day again tomorrow.
Good night and Love --- Pepper (Turnip)
DEFINITION: (adjective) expressed clearly and directly.
Long, long, long day! Arrived at UAMS at 6:30 a.m. and got home at 5:00 p.m.
Good news: WBC today -- 9.0 (2.0 being the low). Platelets -- 228 (20 being the low).
Bad news: The pulled muscle in ChemoSabe's calf (he thought) was in fact a blood clot. After the MRI first thing this morning we went over to the MM Clinic and spoke with a Triage nurse. She sat us up immediately with a Vascular Doppler, even before our next scheduled test. It revealed blood clots in both legs.
From my plan yesterday, we had decided I would drop ChemoSabe off at MRI and go on in to work since the MRI is a two hour test. After the cane deal last evening and then seeing how ChemoSabe could NOT walk this morning I decided to stay with him and we got a wheelchair as soon as we arrived. We kept the wheelchair until we left.
Our route for the day was -- hospital basement, MM clinic two buildings over, back to hospital first floor, over to Outpatient 3rd floor (building next to hospital), down to Outpatient 2nd floor and then over to first floor Infusion which is one building between the Outpatient and MM Clinic. We had originally parked at the hospital, but while he was in MRI I moved the Tahoe over to Outpatient deck which is covered. We were expecting rain and it is closer to MM Clinic and Infusion.
The treatment for the blood clots, which were the direct result of taking the Thalidomide, is two gut shots every 12 hours of Lovenox which is a blood thinner. I will be giving him those shots daily for 30 days. Here is the kicker --- remember yesterday we discussed the insurance problem? When we got to Outpatient Pharmacy we were advised the Lovenox was -- Are you ready? $4,615.26. The pharmacist was as dumbfounded as we. He felt so bad he asked us for the insurance card and he would go to the back. We sat down. Well, I did. ChemoSabe was in the wheelchair, but I believe I saw him almost fall out of it.
We waited for about 20 minutes and they called our name. I asked ChemoSabe to stay put. I could see the "what are we going to do now?" look in his eyes. I had already told the pharmacist that we could not leave without it. Well, they advised us insurance would pay for 14 prefilled syringes. That means seven days worth. I could come back next Wednesday to see if they would pay for another 14 and we would have to try it a week-at-a- time. So, I took the brown bag and sucked in my breath and asked the big question -- "How much?"... Are you ready? $50.00. I didn't ask any more questions. I just told the Pharmacist I loved him and paid cash and walked away -- QUICKLY! My momma always told me, "Don't look a gift horse in the mouth".
Another instruction we received for treatment -- ChemoSabe can basically only get up to go to the restroom until Monday when we go back for our original doctor's appointment, except for the daily visits over the weekend. He has been asleep all afternoon and evening except for dinner of which he ate fairly well. We also have our appointment set up for the big dose of chemo on Tuesday at 9:00 a.m. This is the one that will wipe him out.
I do not know what we are going to do about the rest of the year's worth of medical expenses for him. I do know we cannot worry about it. We have to put it in God's hands. Therein lies my problem. Those of you familiar with me know I am a control freak. I want the answers before the question is asked. I want the solution before the problem arises. I know we probably have several options, but I feel I am running out of gas and it is a problem I just don't want to pursue right now. I am too focused on his health instead of finances. Let's take care of his problem before I have to worry about paying for it. That is more important to me right now. Don't get me wrong, I am not irresponsible, I just need to give it to God. It is very difficult for me to be humble, so you guys are going to have to help me with that. Teach me to be humble and ask Him to give me peace. Give me the strength to focus on ChemoSabe only. Pray for me that I will give up my CONTROL! Again, those of you knowing me, know that will be a hard task for me. I am such a freak I feel I am the only one that can solve these problems. I am so selfish I will not ask Him to help me. Yes, I am stubborn and hardheaded, too. Which reminds me of one of my favorite songs a long, long time ago... Mac Davis -- "Oh, Lord it's hard to be humble when you are perfect in every way. I can't wait to look in the mirror because I get better looking each day. To know me is to love me. I must be one hell of a (wo)man. Oh, Lord it's hard to be humble, but I'm doing the best that I can."
Well, Kids -- I am closing on that "music" note. We have a busy day again tomorrow.
Good night and Love --- Pepper (Turnip)
Wednesday, August 6, 2008
Anniversary (Update) -- Word for the Day -- Wednesday, August 6, 2008
UPDATE -- Anniversary
ChemoSabe is not a happy camper tonight. The pain in his calf is now so bad he can hardly walk. He pulled his cane out and I haven't seen it since 1998. I looked his leg over when he came home and the back of it is pretty well swollen, but I see no redness. He has been in the recliner all evening.
The RN niece came over with hubby and child and looked it over. She thinks, as he, that it is just a pulled muscle. We both agree he should have it checked out tomorrow. I pulled out some instant hand warmers from our biker gear and placed them on the back of his leg and secured them with an ace bandage and elevated it. He asked for a pain pill, which is highly unusual and he is out.
Our anniversary dinner, you ask? His favorite, of course -- Digorno Supreme pizza. Tomorrow evening we will be having filet Mignon with baked potato.
UAMS has been switching our schedule around a bit. I hope it has nothing to do with the insurance deal today. The insurance company advised me they had contacted UAMS before they called me. I am curious if the insurance is void on the UAMS treatment or on any other type of illness through the end of the year. I am also concerned about the medication coverage as he needs four refills before the weekend. Questions I did not think of today during our conversation. I will be calling back tomorrow.
All-in-all, we had a very good evening. I got some needed housework and washing done. Didn't get around to Woody's cage, I didn't beat the dogs and nor did I scatter the fish. I did rearrange the spare bedroom and the sunroom. Those of you familiar with me know I have to rearrange a room at least once a month. Our two blinds dogs hate me when that happens.
Billy's WBC is coming down rapidly. He is happy about that. Still has some nausea, but the clinic is giving him something for that. I hate to see them go home, but I hope he gets to soon. We have not been able to see them this trip. Our missed dinner last week was due to my illness. Can't make these boys ill with something other than what they have already. Still ain't been no kissin in this house.
I will let you know at the end of the week how all the tests went. Especially the BMB (bone marrow biopsy). I already have the lollipops and sedative in my bag.
Better hit the rack since he has to be at UAMS by 6:30 a.m.
Remember -- God is good all the time; All the time God is good.
Good night and Love -- Pepper (Turnip)
p.s. -- Thanks for listening to my gripes today about the insurance. Bummer!
ChemoSabe is not a happy camper tonight. The pain in his calf is now so bad he can hardly walk. He pulled his cane out and I haven't seen it since 1998. I looked his leg over when he came home and the back of it is pretty well swollen, but I see no redness. He has been in the recliner all evening.
The RN niece came over with hubby and child and looked it over. She thinks, as he, that it is just a pulled muscle. We both agree he should have it checked out tomorrow. I pulled out some instant hand warmers from our biker gear and placed them on the back of his leg and secured them with an ace bandage and elevated it. He asked for a pain pill, which is highly unusual and he is out.
Our anniversary dinner, you ask? His favorite, of course -- Digorno Supreme pizza. Tomorrow evening we will be having filet Mignon with baked potato.
UAMS has been switching our schedule around a bit. I hope it has nothing to do with the insurance deal today. The insurance company advised me they had contacted UAMS before they called me. I am curious if the insurance is void on the UAMS treatment or on any other type of illness through the end of the year. I am also concerned about the medication coverage as he needs four refills before the weekend. Questions I did not think of today during our conversation. I will be calling back tomorrow.
All-in-all, we had a very good evening. I got some needed housework and washing done. Didn't get around to Woody's cage, I didn't beat the dogs and nor did I scatter the fish. I did rearrange the spare bedroom and the sunroom. Those of you familiar with me know I have to rearrange a room at least once a month. Our two blinds dogs hate me when that happens.
Billy's WBC is coming down rapidly. He is happy about that. Still has some nausea, but the clinic is giving him something for that. I hate to see them go home, but I hope he gets to soon. We have not been able to see them this trip. Our missed dinner last week was due to my illness. Can't make these boys ill with something other than what they have already. Still ain't been no kissin in this house.
I will let you know at the end of the week how all the tests went. Especially the BMB (bone marrow biopsy). I already have the lollipops and sedative in my bag.
Better hit the rack since he has to be at UAMS by 6:30 a.m.
Remember -- God is good all the time; All the time God is good.
Good night and Love -- Pepper (Turnip)
p.s. -- Thanks for listening to my gripes today about the insurance. Bummer!
Anniversary -- Word for the Day -- Wednesday, August 6, 2008
Anniversary
Definition: the annual recurrence of a date marking a notable event; broadly : a date that follows such an event by a specified period of time measured in units other than years
This evening at 7:30 marks a day in our lives, 21 years ago, that we became one. Now isn't that mushy? About this day of the month in April and May I was wondering if we would have any future anniversaries. Cried like a baby every day. Today things are much different as ChemoSabe's prognosis is considerably better.
This week has been a tiring week for him. Steroids kept him pumped up last week. He was like a fly; couldn't light anywhere for more than a few milliseconds. He is very run down now. His hip hurt him all weekend and we decided it was the side-to-side movements on the deck when we cleaned it last week. Now he has an awful pain in his left calf area. He feels it may be a pulled muscle. Sense he is not on blood thinner right now, I am hoping it isn't a clot. He has not slept well with it.
We have both kicked back early each night this week. I fixed a pot of potato soup and my awesome iron skillet corn bread last night. Seems that was the soul food we needed, even though the weather is still very hot. We got upstairs and to bed by 8:00 in time to watch "America's Got Talent". ChemoSabe didn't get into it but 15 minutes. I looked over and his lamp was shining on the chrome. I had to laugh. If I didn't know better I would believe he put polish on that noggin! He shines his shoes EVERY morning and I am beginning to wonder about the head.
Received a call today that insurance is not paying anymore on treatment. We have reached the max of $125k for the year. Generous of them, wasn't it? We have been through worse and we will make it through this. Cannot let this ruin our day. I will just change my biker name to "Turnip" and tell them when they call for payment that I don't have any blood! ha.. Get it? "Can't squeeze blood out of a turnip". I see a tattoo coming. How would a turnip look on the side of my calf?
My day is winding down. I may write some more this evening after I clean Woody's cage, beat the dogs, scatter the fish and fix ChemoSabe's supper.
Good day --- Love, Pepper
Definition: the annual recurrence of a date marking a notable event; broadly : a date that follows such an event by a specified period of time measured in units other than years
This evening at 7:30 marks a day in our lives, 21 years ago, that we became one. Now isn't that mushy? About this day of the month in April and May I was wondering if we would have any future anniversaries. Cried like a baby every day. Today things are much different as ChemoSabe's prognosis is considerably better.
This week has been a tiring week for him. Steroids kept him pumped up last week. He was like a fly; couldn't light anywhere for more than a few milliseconds. He is very run down now. His hip hurt him all weekend and we decided it was the side-to-side movements on the deck when we cleaned it last week. Now he has an awful pain in his left calf area. He feels it may be a pulled muscle. Sense he is not on blood thinner right now, I am hoping it isn't a clot. He has not slept well with it.
We have both kicked back early each night this week. I fixed a pot of potato soup and my awesome iron skillet corn bread last night. Seems that was the soul food we needed, even though the weather is still very hot. We got upstairs and to bed by 8:00 in time to watch "America's Got Talent". ChemoSabe didn't get into it but 15 minutes. I looked over and his lamp was shining on the chrome. I had to laugh. If I didn't know better I would believe he put polish on that noggin! He shines his shoes EVERY morning and I am beginning to wonder about the head.
Received a call today that insurance is not paying anymore on treatment. We have reached the max of $125k for the year. Generous of them, wasn't it? We have been through worse and we will make it through this. Cannot let this ruin our day. I will just change my biker name to "Turnip" and tell them when they call for payment that I don't have any blood! ha.. Get it? "Can't squeeze blood out of a turnip". I see a tattoo coming. How would a turnip look on the side of my calf?
My day is winding down. I may write some more this evening after I clean Woody's cage, beat the dogs, scatter the fish and fix ChemoSabe's supper.
Good day --- Love, Pepper
Monday, August 4, 2008
Platelet -- Word for the Day -- Monday, August 4, 2008
Platelet
Definition: a minute flattened body (as of ice or a mineral); especially : a minute colorless disklike body of mammalian blood that assists in blood clotting by adhering to other platelets and to damaged epithelium —called also blood platelet.
Here's a history listen for you guys today. Do you remember the low count for Platelets? When ChemoSabe's platelets became a certain level he would be in the Infusion chair for approximately 30 minutes to receive a bag. Okay -- here's your answer -- Below 20. He received his report today from last Thursday and his platelets are 155. AWESOME!
Okay -- I will tell you this one.. We get worried when the WBC is below 2. Thursday he was at 5.29. Yeeeeaaaaaahhhhh!!! He just keeps on getting better. With results like this he will be more than ready for his big dose of chemo on Tuesday. That will knock him down on his knees again, as far as counts go.
With his last dose of steroids on Friday, he was running full speed. I won't tell you how little sleep he got because you wouldn't believe me, but you could probably count on one hand how much in 48 hours. He finally ran out of gas yesterday after we went out and had breakfast with the son. He slept the rest of the day in the recliner. Today he was still out of gas, but didn't crash when he got home. Instead of going to bed at 7:00 or watching reruns on television, we watched a very good movie with Kevin Spacy (21) and are down for the night.
Billy had his transplant today. ChemoSabe called him this afternoon and got the scoop. He sounded relieved when he got off the phone. Billy says he feels well except for a little nausea. He is quite susceptible to infection now. He indicates you can go down for about a week and then come back up and then you get another dose of cells. We didn't realize it would be so fast, but here we are. It's amazing and humbling. We are about to have babies.
We stayed in much of the weekend. Son came over on Saturday since he was a 'weekend bachelor' and cooked us burgers on the grill. Rainman and Stretch were out riding their bikes and dropped in to cool off. None too soon, I would venture to say. Too, too hot to ride.
We have a lot in store this week. ChemoSabe will be at UAMS by 7:00 a.m. on Thursday and his last test begins at 1:30 p.m. That being the dreaded bone marrow biopsy again. He doesn't seem to be dreading it as much as in the past. Even with much discomfort at least he knows it is just a drop in the bucket to survival. I plan to drop him off and got into work so I can catch up. I need at least three hours to get my Sunday work ready. He can do the first four tests, but that BMB just ain't a one man band.
I have seen about three articles in the paper the last two weeks about the MM patients at UAMS. A blog on KTHV gives us statistics, contact with other patients, etc. I have not looked at the blog. Another article tells about the movies and dinner once a month for the patients. And one today was about a Corp of Engineers camp site where patients live in the RVs while away from home. Have I been unaware of these stories in the past about the popularity of MM, or is it such a common disease and I have not been listening to the words in the past? Does that make sense to you? I hate long sentences.
Rainman told ChemoSabe of a man in Conway he speaks with that is an eight year survivor. He will be getting a call from ChemoSabe for progress notes.
Well -- got my orders to finish up. I have been the patient since Thursday myself so I need to wind down. I am running out of fuel. Could I get some steroids, please?!
Good night and love those platelets!! Pepper
Definition: a minute flattened body (as of ice or a mineral); especially : a minute colorless disklike body of mammalian blood that assists in blood clotting by adhering to other platelets and to damaged epithelium —called also blood platelet.
Here's a history listen for you guys today. Do you remember the low count for Platelets? When ChemoSabe's platelets became a certain level he would be in the Infusion chair for approximately 30 minutes to receive a bag. Okay -- here's your answer -- Below 20. He received his report today from last Thursday and his platelets are 155. AWESOME!
Okay -- I will tell you this one.. We get worried when the WBC is below 2. Thursday he was at 5.29. Yeeeeaaaaaahhhhh!!! He just keeps on getting better. With results like this he will be more than ready for his big dose of chemo on Tuesday. That will knock him down on his knees again, as far as counts go.
With his last dose of steroids on Friday, he was running full speed. I won't tell you how little sleep he got because you wouldn't believe me, but you could probably count on one hand how much in 48 hours. He finally ran out of gas yesterday after we went out and had breakfast with the son. He slept the rest of the day in the recliner. Today he was still out of gas, but didn't crash when he got home. Instead of going to bed at 7:00 or watching reruns on television, we watched a very good movie with Kevin Spacy (21) and are down for the night.
Billy had his transplant today. ChemoSabe called him this afternoon and got the scoop. He sounded relieved when he got off the phone. Billy says he feels well except for a little nausea. He is quite susceptible to infection now. He indicates you can go down for about a week and then come back up and then you get another dose of cells. We didn't realize it would be so fast, but here we are. It's amazing and humbling. We are about to have babies.
We stayed in much of the weekend. Son came over on Saturday since he was a 'weekend bachelor' and cooked us burgers on the grill. Rainman and Stretch were out riding their bikes and dropped in to cool off. None too soon, I would venture to say. Too, too hot to ride.
We have a lot in store this week. ChemoSabe will be at UAMS by 7:00 a.m. on Thursday and his last test begins at 1:30 p.m. That being the dreaded bone marrow biopsy again. He doesn't seem to be dreading it as much as in the past. Even with much discomfort at least he knows it is just a drop in the bucket to survival. I plan to drop him off and got into work so I can catch up. I need at least three hours to get my Sunday work ready. He can do the first four tests, but that BMB just ain't a one man band.
I have seen about three articles in the paper the last two weeks about the MM patients at UAMS. A blog on KTHV gives us statistics, contact with other patients, etc. I have not looked at the blog. Another article tells about the movies and dinner once a month for the patients. And one today was about a Corp of Engineers camp site where patients live in the RVs while away from home. Have I been unaware of these stories in the past about the popularity of MM, or is it such a common disease and I have not been listening to the words in the past? Does that make sense to you? I hate long sentences.
Rainman told ChemoSabe of a man in Conway he speaks with that is an eight year survivor. He will be getting a call from ChemoSabe for progress notes.
Well -- got my orders to finish up. I have been the patient since Thursday myself so I need to wind down. I am running out of fuel. Could I get some steroids, please?!
Good night and love those platelets!! Pepper
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