Persevere
DEFINITION: (verb) to continue despite difficulties
My very first posting on ChemoSabe's journey was: Persevere -- April 13, 2008 -- Dreaded Visit and here we are again. Not even a year and I am dreading next week. We begin on Sunday with an MRI, then the bone marrow biopsy on Tuesday, doctor's visit Wednesday and the dreaded port insert on Thursday.
I DON'T WANT TO DO THIS!!!! Hell, who am I? It's ChemoSabe that will be going through it.
I remember having to go to the dentist A LOT when I was growing up and throughout my early adult years. At times I was going once a week. It would seem the visits would get easier, but not for me. They got harder. I would suspect ChemoSabe is the same way, although we haven't discussed it.
We will be discontinuing the Thalidomide (chemo by mouth) today and the Lovenox (blood thinner). He is happy about both. I am certain he will start a new regimen of pills at different doses. He has had so many I can't remember. I should be taking the test and not you -- Right?
He is extremely healthy now. Has gained a few pounds. Trying to keep up with me, I suppose. He doesn't get tired and seems to have enough energy to complete any task. We do relax a lot on the weekends by having our movie marathons. Somehow we do keep the house in order and the kids clean.
He is consumed in work and I know he doesn't look forward to any interferences with his schedule. His work is his life. No, he doesn't put it before me, but....
It will be a difficult time in time management for me because of my mother. She has become to expect me daily. I have reduced my visits for her acclamation and she is doing well as far as independence, but she can't seem to do without me more than one day. Please pray for my stress level during that time when I am trying to get by for her, trying to get home to ChemoSabe and trying to work, along with the home chores. It does sound like I am feeling sorry for myself, but I truly am not. Challenge, as with 2008, is my middle name.
What a year it has been!!!!! Who would have thought we would have had these trials. I believe I am stronger for it. ChemoSabe is definitely stronger physically, mentally and spiritually. He continues to outrun his competition.
We did have lab today, but we do not have the results, so I will keep you posted. At the risk of rambling, I will close and followup, hopefully before year end!
We will persevere!
As always and Love -- Pepper
Chemo Sabe
- ChemoSabe
- Benton, AR, United States
- Diagnosed with Multiple Myeloma-- May 2008
Tuesday, December 30, 2008
Thursday, December 18, 2008
Protagonist -- Word for the Day -- Thursday, December 18, 2008
Protagonist
DEFINITION: (noun) the main character in a story or play; the main supporter of an idea.
When I first saw this word, for some reason I related it to procrastinate... That would be me at times, like cleaning the house, doing bills, etc. But, protagonist reminds me really of several individuals; ChemoSabe, because this journal was created for him; me (Pepper) because I thought of journaling (gosh, I'm intelligent); Son, because he has helped us so much this year; Cissy, because she listens; Sister, because she chauffered; Stretch and Rainman, for putting up with us; Niece, because she interpreted; Aunt, because we have become closer; Brother, because he dog sat while we got away; and the list goes on.
So, with that, we have so much to be thankful for this Christmas. The Lord has brought us through so many trials and I believe we did pretty doggone good.
We have been making our Christmas lists. Our conversation -- "What do you want for Christmas", "No, what do you want for Christmas", "No, I asked you first", "No, you tell me". Actually, after this year, I have exactly what I want -- my husband and my mother. Those two gave me a grave scare. Which brings me to my boss' best sermon this year - "Why count your blessings when you can complain?" I think of that each time I start to stumble, get tired, irritable, negative or unappreciative. It works. I won't tell you how many times I use it! ha
It stills brings me back to the protagonist. ChemoSabe had labs this week and did terrific. WBC at 8.51, RBC at 4.32, Platelets at 163, M-protein cannot be detected. So, this is your test... You knew it was coming. Do you remember what the ranges are? I thought so... So, I will give you some help -- WBC (3-12), RBC (4.5-6), Platelets (150-500). There ya go... Now, are you back on track?
Well, just wanted to catch you up on the good news about the labs. I promise I will do a better job of keeping you posted. BUT, if I don't -- Merry Christmas and Happy New Year!
Good night and Love -- Pepper.
DEFINITION: (noun) the main character in a story or play; the main supporter of an idea.
When I first saw this word, for some reason I related it to procrastinate... That would be me at times, like cleaning the house, doing bills, etc. But, protagonist reminds me really of several individuals; ChemoSabe, because this journal was created for him; me (Pepper) because I thought of journaling (gosh, I'm intelligent); Son, because he has helped us so much this year; Cissy, because she listens; Sister, because she chauffered; Stretch and Rainman, for putting up with us; Niece, because she interpreted; Aunt, because we have become closer; Brother, because he dog sat while we got away; and the list goes on.
So, with that, we have so much to be thankful for this Christmas. The Lord has brought us through so many trials and I believe we did pretty doggone good.
We have been making our Christmas lists. Our conversation -- "What do you want for Christmas", "No, what do you want for Christmas", "No, I asked you first", "No, you tell me". Actually, after this year, I have exactly what I want -- my husband and my mother. Those two gave me a grave scare. Which brings me to my boss' best sermon this year - "Why count your blessings when you can complain?" I think of that each time I start to stumble, get tired, irritable, negative or unappreciative. It works. I won't tell you how many times I use it! ha
It stills brings me back to the protagonist. ChemoSabe had labs this week and did terrific. WBC at 8.51, RBC at 4.32, Platelets at 163, M-protein cannot be detected. So, this is your test... You knew it was coming. Do you remember what the ranges are? I thought so... So, I will give you some help -- WBC (3-12), RBC (4.5-6), Platelets (150-500). There ya go... Now, are you back on track?
Well, just wanted to catch you up on the good news about the labs. I promise I will do a better job of keeping you posted. BUT, if I don't -- Merry Christmas and Happy New Year!
Good night and Love -- Pepper.
Monday, December 8, 2008
TOYS FOR TOTS -- Word for the Day -- Monday, December 8, 2008
U.S. Marine Corps Reserve Toys for Tots Program
MISSION: The mission of the U.S. Marine Corps Reserve Toys for Tots Program is to collect new, unwrapped toys during October, November and December each year, and distribute those toys as Christmas gifts to needy children in the community in which the campaign is conducted.
GOAL: The primary goal of Toys for Tots is to deliver, through a shiny new toy at Christmas, a message of hope to needy youngsters that will motivate them to grow into responsible, productive, patriotic citizens and community leaders.
OBJECTIVES: The objectives of Toys for Tots are to help needy children throughout the United States experience the joy of Christmas; to play an active role in the development of one of our nation's most valuable natural resources - our children; to unite all members of local communities in a common cause for three months each year during the annual toy collection and distribution campaign; and to contribute to better communities in the future.
================================================================
ChemoSabe had his labs last week and everything is going well. He is gearing up for January. With a lot of business plans this week he has had to take up the responsibility of giving himself stomach shots. Saturday was his first day as I watched. He did not even flinch.
Began steroids again last Friday. I can tell by his attitude he is on them. Tomorrow is the last day and then he will crash by Thursday. Roller coaster ride!
The tops of his hands have been bruising badly from the blood thinner. Looks like blood blisters. Mostly from Pete jumping on him and scratching him. He can put his hand in his pocket and they burst like blisters. He then bleeds heavily. I think we could do his shots every other day. I would hate for him to cut himself and bleed like that.
Early mornings last week and this week. He was up at 3:30 this morning and gone by 5:00. He seems to have good energy without tiring easily. He has put on some weight (15 lb.), but I won't tell you how much he weighs. He might read this! ha Looks like he might be catching up with me.
We did the Toys for Tots ride yesterday. It is our 5th year. It didn't seem as big as the years before, but we believe it was because it was on Sunday instead of Saturday. We were right in the middle of the motorcycle parade. I couldn't hear my bike to shift because of all the thundering pipes around me. AWESOME! The son rode with us and it was good to have him there.
My brother came in this weekend to spend time with my mom. She loves to see him and she seems to do so much better with him. We hope to bring her to our house for a day next weekend, but it will really hurt her to go back. She doesn't realize she won't be able to go home again.
Other than the cooler weather and ChemoSabe's travels, not too much going on. We have pulled some of our wood up from the pile and had two fires last week. We have some good burning wood this year.
Gotta run---
Good day and Love -- Pepper
MISSION: The mission of the U.S. Marine Corps Reserve Toys for Tots Program is to collect new, unwrapped toys during October, November and December each year, and distribute those toys as Christmas gifts to needy children in the community in which the campaign is conducted.
GOAL: The primary goal of Toys for Tots is to deliver, through a shiny new toy at Christmas, a message of hope to needy youngsters that will motivate them to grow into responsible, productive, patriotic citizens and community leaders.
OBJECTIVES: The objectives of Toys for Tots are to help needy children throughout the United States experience the joy of Christmas; to play an active role in the development of one of our nation's most valuable natural resources - our children; to unite all members of local communities in a common cause for three months each year during the annual toy collection and distribution campaign; and to contribute to better communities in the future.
================================================================
ChemoSabe had his labs last week and everything is going well. He is gearing up for January. With a lot of business plans this week he has had to take up the responsibility of giving himself stomach shots. Saturday was his first day as I watched. He did not even flinch.
Began steroids again last Friday. I can tell by his attitude he is on them. Tomorrow is the last day and then he will crash by Thursday. Roller coaster ride!
The tops of his hands have been bruising badly from the blood thinner. Looks like blood blisters. Mostly from Pete jumping on him and scratching him. He can put his hand in his pocket and they burst like blisters. He then bleeds heavily. I think we could do his shots every other day. I would hate for him to cut himself and bleed like that.
Early mornings last week and this week. He was up at 3:30 this morning and gone by 5:00. He seems to have good energy without tiring easily. He has put on some weight (15 lb.), but I won't tell you how much he weighs. He might read this! ha Looks like he might be catching up with me.
We did the Toys for Tots ride yesterday. It is our 5th year. It didn't seem as big as the years before, but we believe it was because it was on Sunday instead of Saturday. We were right in the middle of the motorcycle parade. I couldn't hear my bike to shift because of all the thundering pipes around me. AWESOME! The son rode with us and it was good to have him there.
My brother came in this weekend to spend time with my mom. She loves to see him and she seems to do so much better with him. We hope to bring her to our house for a day next weekend, but it will really hurt her to go back. She doesn't realize she won't be able to go home again.
Other than the cooler weather and ChemoSabe's travels, not too much going on. We have pulled some of our wood up from the pile and had two fires last week. We have some good burning wood this year.
Gotta run---
Good day and Love -- Pepper
Tuesday, December 2, 2008
Dissipate -- Word for the Day -- December 2, 2008
Dissipate
DEFINITION: (verb) to spread out or scatter.
How many days before Christmas? This is where I would like to dissipate. Go into a hole and hide or just disappear. I am not ready for Christmas. Are you?
I think of the year ChemoSabe and I have had and now we are looking at starting over again on January 4, 2009 with more testing and preparing for another round of chemo. We will find out on January 7 if we will be receiving another stem cell transplant. Not to be negative, but our insurance starts back up in January and even though the doc told us we would go to Consolidation in December and not a transplant, I believe he will decide on the transplant. Whatever it takes, we are ready. We are more prepared this round.
We are both healthy right now. ChemoSabe is still experiencing numbness in his left leg and the bottoms of both feet due to the Thalidomide. He is taking a med to help with the nerve endings, but it is not a cure. He could have this forever or it could slowly disappear. He was advised yesterday by our transplant RN that a new drug has come out to replace Thalidomide without the side effects. He feels better about that.
The hair. It is almost longer than mine. And, mine is pretty doggone short. His eyebrows are thick and almost all black. He is eating well (too well) and has good energy. We are still in the Bridging therapy of 21 days of certain meds with the first four days of steroids. Our 21 days begin again on Thursday so he will be hopping on the weekend.
He worked in the yard a lot over the holiday for three days. He even raked leaves in the rain (drizzle). He felt very good after those three days and I believe he is more confident he will not be weak or tired for the rest of his life. He continues to have an excellent attitude.
We are riding for Toys for Tots this weekend. We do it every year. There will be about 1,500 bikes or more and we will probably be right in the thick of things. I especially love the parade to Toy Hill. It brings tears to my eyes the whole way. I just can't contain myself seeing the children on the streets waving at us and I wonder how many of those actual kids will be needing the toys we carry to the Hill.
My stress level has dropped since I gave myself a good talking to. I can't control illnesses in my family. My mom is adjusting with still has very bad days of simple mindedness. That hurts me since she has always been an independent, strong willed person. ChemoSabe's dad had surgery a couple of weeks ago and he is doing fine. My boss had a TIA (mini stroke) last week and he was back to work in two days. My sister-in-law continues with radiation and chemo. I remain with the weight loss problem! ha
Just wanted to update you since my last writing was November 20. Your love for us and prayers has worked wonders. Just when I think I will lose my mind -- you call.
Have a good day and Love -- Pepper
DEFINITION: (verb) to spread out or scatter.
How many days before Christmas? This is where I would like to dissipate. Go into a hole and hide or just disappear. I am not ready for Christmas. Are you?
I think of the year ChemoSabe and I have had and now we are looking at starting over again on January 4, 2009 with more testing and preparing for another round of chemo. We will find out on January 7 if we will be receiving another stem cell transplant. Not to be negative, but our insurance starts back up in January and even though the doc told us we would go to Consolidation in December and not a transplant, I believe he will decide on the transplant. Whatever it takes, we are ready. We are more prepared this round.
We are both healthy right now. ChemoSabe is still experiencing numbness in his left leg and the bottoms of both feet due to the Thalidomide. He is taking a med to help with the nerve endings, but it is not a cure. He could have this forever or it could slowly disappear. He was advised yesterday by our transplant RN that a new drug has come out to replace Thalidomide without the side effects. He feels better about that.
The hair. It is almost longer than mine. And, mine is pretty doggone short. His eyebrows are thick and almost all black. He is eating well (too well) and has good energy. We are still in the Bridging therapy of 21 days of certain meds with the first four days of steroids. Our 21 days begin again on Thursday so he will be hopping on the weekend.
He worked in the yard a lot over the holiday for three days. He even raked leaves in the rain (drizzle). He felt very good after those three days and I believe he is more confident he will not be weak or tired for the rest of his life. He continues to have an excellent attitude.
We are riding for Toys for Tots this weekend. We do it every year. There will be about 1,500 bikes or more and we will probably be right in the thick of things. I especially love the parade to Toy Hill. It brings tears to my eyes the whole way. I just can't contain myself seeing the children on the streets waving at us and I wonder how many of those actual kids will be needing the toys we carry to the Hill.
My stress level has dropped since I gave myself a good talking to. I can't control illnesses in my family. My mom is adjusting with still has very bad days of simple mindedness. That hurts me since she has always been an independent, strong willed person. ChemoSabe's dad had surgery a couple of weeks ago and he is doing fine. My boss had a TIA (mini stroke) last week and he was back to work in two days. My sister-in-law continues with radiation and chemo. I remain with the weight loss problem! ha
Just wanted to update you since my last writing was November 20. Your love for us and prayers has worked wonders. Just when I think I will lose my mind -- you call.
Have a good day and Love -- Pepper
Thursday, November 20, 2008
Tedium -- Word for the Day -- Thursday, November 20, 2008
Tedium
DEFINITION: (noun) the condition of being tedious.
My life is far from being tedium these days. God just keeps me turning to different areas of my life. Just when I think I am on track and concurred another feat, He gives me something else. He doesn't want me tedious, for sure.
Parker, the diabetic, blind silkie, ate a cactus before I got home this evening. He is sicker than the dog he is suppose to be. We had two - 2 x 2 pillows and one bed pillow in the sun room for the three larger dogs and Parker ruined them all today. Poor guy.
ChemoSabe is out of town. I finally convinced him he needed to spend the night instead of driving in and then back in the morning. He wanted up at 4:15 this morning and when he began snoring I went to the spare bedroom. I set the clock for 4:15 and tried to sleep. I was afraid I wouldn't get him up in time. Well, I got him up and went back to my own bed with pillows in hand and when I reset my clock for my time I noticed is was actually 3:15. I never set the clock back on hour in the space bedroom. Poor guy... he got up anyway.
It was a good thing..... After about an hour into his leaving I heard the alarm deactivate and saw the stair well light come on. I was wondering who could be in the house. I thought I was dreaming. Well, it was him.... He had forgotten his luggage. I hadn't helped him pack or get his things together last night so he could start depending on himself. Guess I should have helped! ha
Mom is not much better as far as eating and her memory. She looks very good and seems to be stronger physically. She is tedium with her goals and doesn't want to participate. She has been threatening to slap the therapist nurses and if she doesn't cooperate within the next week they will be dismissing her from her activities. That's where we will have to deal with medicare and medicaid issues again.
ChemoSabe started his Bridging Therapy on Saturday again. Four days of steroids and Thalidomide, along with three other meds. I am still doing the gut shots and yes, I am still bruising. I believe I may put the needle straight in instead of a 45 deg. slant like one nurse advised.
He still has numbness and no feeling in his left foot. He is taking three pills a day for that, but it doesn't seem to help. He can't get his hopes up because he was advised it might always be that way.
We got to babysit Big E last weekend and I believe that gave us a refreshing breather from our normal. He is such a charm to be around. He has us wrapped around his finger. But, of course, I know all grandchildren are like that.
We wanted to ride last weekend, but I got ChemoSabe on the rake and I got on the blower. We finished out the front yard and the dog yard, which is bigger. I may get out on the back yard tomorrow. It is mostly woods, but I still do it. After I do, it looks like a city park.
We are thankful to have a little break from the chemo. I am trying to get a little break from the nursing home as I was going three times a day. She is just getting to dependent on me. I want her to be able to acclimate and be able to make decisions on her own.
I have Pete sleeping with me tonight. The early hours that I go back to sleep when ChemoSabe heads out I have been having dream tremors. So, if Pete is with me and he doesn't get up growling, then I will know I am truly dreaming and no bogey man is shaking my bed.
Thank you for you continued prayers, calls and emails.
Good night and Love -- Pepper
DEFINITION: (noun) the condition of being tedious.
My life is far from being tedium these days. God just keeps me turning to different areas of my life. Just when I think I am on track and concurred another feat, He gives me something else. He doesn't want me tedious, for sure.
Parker, the diabetic, blind silkie, ate a cactus before I got home this evening. He is sicker than the dog he is suppose to be. We had two - 2 x 2 pillows and one bed pillow in the sun room for the three larger dogs and Parker ruined them all today. Poor guy.
ChemoSabe is out of town. I finally convinced him he needed to spend the night instead of driving in and then back in the morning. He wanted up at 4:15 this morning and when he began snoring I went to the spare bedroom. I set the clock for 4:15 and tried to sleep. I was afraid I wouldn't get him up in time. Well, I got him up and went back to my own bed with pillows in hand and when I reset my clock for my time I noticed is was actually 3:15. I never set the clock back on hour in the space bedroom. Poor guy... he got up anyway.
It was a good thing..... After about an hour into his leaving I heard the alarm deactivate and saw the stair well light come on. I was wondering who could be in the house. I thought I was dreaming. Well, it was him.... He had forgotten his luggage. I hadn't helped him pack or get his things together last night so he could start depending on himself. Guess I should have helped! ha
Mom is not much better as far as eating and her memory. She looks very good and seems to be stronger physically. She is tedium with her goals and doesn't want to participate. She has been threatening to slap the therapist nurses and if she doesn't cooperate within the next week they will be dismissing her from her activities. That's where we will have to deal with medicare and medicaid issues again.
ChemoSabe started his Bridging Therapy on Saturday again. Four days of steroids and Thalidomide, along with three other meds. I am still doing the gut shots and yes, I am still bruising. I believe I may put the needle straight in instead of a 45 deg. slant like one nurse advised.
He still has numbness and no feeling in his left foot. He is taking three pills a day for that, but it doesn't seem to help. He can't get his hopes up because he was advised it might always be that way.
We got to babysit Big E last weekend and I believe that gave us a refreshing breather from our normal. He is such a charm to be around. He has us wrapped around his finger. But, of course, I know all grandchildren are like that.
We wanted to ride last weekend, but I got ChemoSabe on the rake and I got on the blower. We finished out the front yard and the dog yard, which is bigger. I may get out on the back yard tomorrow. It is mostly woods, but I still do it. After I do, it looks like a city park.
We are thankful to have a little break from the chemo. I am trying to get a little break from the nursing home as I was going three times a day. She is just getting to dependent on me. I want her to be able to acclimate and be able to make decisions on her own.
I have Pete sleeping with me tonight. The early hours that I go back to sleep when ChemoSabe heads out I have been having dream tremors. So, if Pete is with me and he doesn't get up growling, then I will know I am truly dreaming and no bogey man is shaking my bed.
Thank you for you continued prayers, calls and emails.
Good night and Love -- Pepper
Tuesday, November 11, 2008
Replete -- Word for the Day -- Tuesday, November 11, 2008
Replete
DEFINITION: (adjective) filled abundantly.
Although the last few weeks have been pure hell, they have been repleted in that our life together, in some sense of the word, has been back to normal.
My oldest brother came in for the weekend again and that gave ChemoSabe and me time to clean a little on the house and to blow and burn leaves. Our yard was completely clear, UNTIL..... The rain came in on Monday night along with the wind and now we are covered again. I try to blow at least once a week during the fall and that gives me a leg up on being drowned by the cleansing of nature.
The weekend was also one that reminds me of old times with Poppy. The brisk air and the exercise was more medication that he needed to feel revived and repleted. No aches and pains were in our vocabulary after the workout. Just enjoyment and satisifaction.
My mom has been progressing well physically. Her memory has a lot to be desired. She still has problems with her speech in completing sentences and forming words. At times, she is as sharp as a whip. She doesn't miss a beat in telling you a story and then..... She seems to know ChemoSabe very well, but she calls him "Johnny". That was my grandpa's name. He lets her rub his head each night before we leave and she laughs and tells him she is proud his hair is growing back. The other night she said, "Him and his damn head!"
His hair is growing back in very thickly and is quite longer than peach fuzz. His eyebrows are more black that white now and I see that in his hair, but we won't know until it gets longer. We are told the next round of chemo will not have an effect on his hair and he won't lose it.
We are getting ready to begin the bridging therapy again. That is the four days of steroids and chemo by mouth. We do that for 21 days along with four other meds and then start over again, until we reach the time for the consolidation. We believe some time in January we will be beginning this process. Until then, he will be doing the daily labs which will start in about a week. He has been bruising very easily and that is from the daily 150 mg of Levonox (blood thinner).
ChemoSabe's dad had minor surgery yesterday and will be in the hospital for about four days. My SIL began chemo/radiation this week and is in a wheelchair. Our friend, Shooter's mom had surgery last week and they have discovered more cancer and she also will begin chemo/radiation when she is strong enough.
When it rains, it pours. But, we are still thankful for our blessings and good fortune.
Please continue to pray for us and we will pray for you.
Good day and Love -- Pepper
DEFINITION: (adjective) filled abundantly.
Although the last few weeks have been pure hell, they have been repleted in that our life together, in some sense of the word, has been back to normal.
My oldest brother came in for the weekend again and that gave ChemoSabe and me time to clean a little on the house and to blow and burn leaves. Our yard was completely clear, UNTIL..... The rain came in on Monday night along with the wind and now we are covered again. I try to blow at least once a week during the fall and that gives me a leg up on being drowned by the cleansing of nature.
The weekend was also one that reminds me of old times with Poppy. The brisk air and the exercise was more medication that he needed to feel revived and repleted. No aches and pains were in our vocabulary after the workout. Just enjoyment and satisifaction.
My mom has been progressing well physically. Her memory has a lot to be desired. She still has problems with her speech in completing sentences and forming words. At times, she is as sharp as a whip. She doesn't miss a beat in telling you a story and then..... She seems to know ChemoSabe very well, but she calls him "Johnny". That was my grandpa's name. He lets her rub his head each night before we leave and she laughs and tells him she is proud his hair is growing back. The other night she said, "Him and his damn head!"
His hair is growing back in very thickly and is quite longer than peach fuzz. His eyebrows are more black that white now and I see that in his hair, but we won't know until it gets longer. We are told the next round of chemo will not have an effect on his hair and he won't lose it.
We are getting ready to begin the bridging therapy again. That is the four days of steroids and chemo by mouth. We do that for 21 days along with four other meds and then start over again, until we reach the time for the consolidation. We believe some time in January we will be beginning this process. Until then, he will be doing the daily labs which will start in about a week. He has been bruising very easily and that is from the daily 150 mg of Levonox (blood thinner).
ChemoSabe's dad had minor surgery yesterday and will be in the hospital for about four days. My SIL began chemo/radiation this week and is in a wheelchair. Our friend, Shooter's mom had surgery last week and they have discovered more cancer and she also will begin chemo/radiation when she is strong enough.
When it rains, it pours. But, we are still thankful for our blessings and good fortune.
Please continue to pray for us and we will pray for you.
Good day and Love -- Pepper
Thursday, November 6, 2008
Zealous -- Word for the Day -- Thursday, November 6, 2008
Zealous
DEFINITION: (adjective) filled with eagerness, fervor, or passion.
Please pray for a family in Southhampton, PA who lost their 15 year old daughter to a hit and run accident this week. She was walking with her friend when a 24 yr old hit them both and drove off. The paper said he thought he hit something, but didn't know what it was. Her name -- Chelsea Lynn Lancieri. Her dad works for the same company as ChemoSabe.
We got overly zealous last weekend. My older brother was in town to spend some time with mom and suggested we get away for the weekend. He didn't have to suggest it twice. We called Rainman and Stretch and headed north to Eureka Springs on the bikes. A perfect time for the changing of the leaves.
ChemoSabe was scheduled for his next round of chemo tomorrow. We have made numerous attempts to convince the doctors he is not covered under insurance until January. Hasn't been since early September. Well, we finally made the decision to insist the treatment is postponed until January. The last reports indicate he is cancer free except for the lesions that remain. Two doctors have advised us that one month for the "Consolidation" therapy will make no difference. From here he will be on a 'maintenance' schedule. Continuing on medications between each chemo process. The focus will be to reduce the lesions and to keep the cancer from coming back.
My mom seems to be doing better now that she is in a nursing home and getting settled. She is moving around more as they do not let her lie in bed all day. Far from the hospice service and actually far from her home activities. Her appetite is improving, but not enough for what they expect. She has been overly zealous herself the last few days. She is beginning to get cocky with some of the nurses and she is complaining to me about some of them. (Back to her ole self. ha)
She still does not know my older brother. She can ask me if I have talked to him lately and claims he hasn't been to see her, just as he has walked out the door to go smoke. Some of the things she says and does are quite humorous. My only fear right now is she is coming around very good and she is beginning to insist of going home.
ChemoSabe continues to travel at least three to four days a week. His legs are still bothering him, but since he has the meds for the nerve endings he is more cautious about his walking and stumbling. The medication seems to be working. We continue on with the stomach shots for blood thinner (150 mg). They want us to do this daily, but he has cut himself back to every other day. I still give him a whopping bruise ever so often, but we can't figure out what causes them.
My days continue to be long with visiting mom twice a day (before work and after) and keeping up with our daily routine. Seems like this would make a big difference on my weight, BUTTTTTTT....is getting wider. At least I am not hanging over the edges of my bike seat.
We finally heard from Billy (Alabama) that had the stroke. He is doing much better and is getting physical therapy 2-3 times a week.
The church where I work assists in housing cancer patients from out of town going to UAMS. We had a MM patient that has stayed a couple of times. His name -- Steve Ryan. He passed away yesterday morning. Another, Mike Clark, is now in the hospital at UAMS and is doing very badly. Please pray for Mike and for Steve's family during these times. It has been very difficult for their spouses. One of them had to go back home to her nursing job only to discover she had been terminated. She then started and new job and now her husband has passed.
My sister-in-law is still having PT and is having a port inserted tomorrow for her chemo/radiation. They have found more spots in her liver and her lymph nodes. She still has numbness and problems in her left leg.
Our friend, Shooter's mom had colon surgery on Wednesday. She had a major portion her lower colon removed. They have found more spots in other areas of her body also, and have taken biopsies.
I can't tell you how much I appreciate your calls and emails. I can't tell you how much I appreciate you that let me vent, complain and fume. It keeps me sane and zealous.
Good afternoon and Love -- Pepper
DEFINITION: (adjective) filled with eagerness, fervor, or passion.
Please pray for a family in Southhampton, PA who lost their 15 year old daughter to a hit and run accident this week. She was walking with her friend when a 24 yr old hit them both and drove off. The paper said he thought he hit something, but didn't know what it was. Her name -- Chelsea Lynn Lancieri. Her dad works for the same company as ChemoSabe.
We got overly zealous last weekend. My older brother was in town to spend some time with mom and suggested we get away for the weekend. He didn't have to suggest it twice. We called Rainman and Stretch and headed north to Eureka Springs on the bikes. A perfect time for the changing of the leaves.
ChemoSabe was scheduled for his next round of chemo tomorrow. We have made numerous attempts to convince the doctors he is not covered under insurance until January. Hasn't been since early September. Well, we finally made the decision to insist the treatment is postponed until January. The last reports indicate he is cancer free except for the lesions that remain. Two doctors have advised us that one month for the "Consolidation" therapy will make no difference. From here he will be on a 'maintenance' schedule. Continuing on medications between each chemo process. The focus will be to reduce the lesions and to keep the cancer from coming back.
My mom seems to be doing better now that she is in a nursing home and getting settled. She is moving around more as they do not let her lie in bed all day. Far from the hospice service and actually far from her home activities. Her appetite is improving, but not enough for what they expect. She has been overly zealous herself the last few days. She is beginning to get cocky with some of the nurses and she is complaining to me about some of them. (Back to her ole self. ha)
She still does not know my older brother. She can ask me if I have talked to him lately and claims he hasn't been to see her, just as he has walked out the door to go smoke. Some of the things she says and does are quite humorous. My only fear right now is she is coming around very good and she is beginning to insist of going home.
ChemoSabe continues to travel at least three to four days a week. His legs are still bothering him, but since he has the meds for the nerve endings he is more cautious about his walking and stumbling. The medication seems to be working. We continue on with the stomach shots for blood thinner (150 mg). They want us to do this daily, but he has cut himself back to every other day. I still give him a whopping bruise ever so often, but we can't figure out what causes them.
My days continue to be long with visiting mom twice a day (before work and after) and keeping up with our daily routine. Seems like this would make a big difference on my weight, BUTTTTTTT....is getting wider. At least I am not hanging over the edges of my bike seat.
We finally heard from Billy (Alabama) that had the stroke. He is doing much better and is getting physical therapy 2-3 times a week.
The church where I work assists in housing cancer patients from out of town going to UAMS. We had a MM patient that has stayed a couple of times. His name -- Steve Ryan. He passed away yesterday morning. Another, Mike Clark, is now in the hospital at UAMS and is doing very badly. Please pray for Mike and for Steve's family during these times. It has been very difficult for their spouses. One of them had to go back home to her nursing job only to discover she had been terminated. She then started and new job and now her husband has passed.
My sister-in-law is still having PT and is having a port inserted tomorrow for her chemo/radiation. They have found more spots in her liver and her lymph nodes. She still has numbness and problems in her left leg.
Our friend, Shooter's mom had colon surgery on Wednesday. She had a major portion her lower colon removed. They have found more spots in other areas of her body also, and have taken biopsies.
I can't tell you how much I appreciate your calls and emails. I can't tell you how much I appreciate you that let me vent, complain and fume. It keeps me sane and zealous.
Good afternoon and Love -- Pepper
Wednesday, October 29, 2008
Phlegmatic -- Word for the Day -- Wednesday, October 29, 2008
Phlegmatic
DEFINITION: (adjective) sluggish and unemotional in temperament.
Ahh!!! The wheels keep turning. I believe I am a broken spoke. Clicking along and being bruised up on the way. Crooked without a hope of being straightened again. Yet, I remain strong because of the content I am made of.
ChemoSabe had his follow up visit yesterday. The journey continues. We begin chemo again on Friday, Nov. 7. It matters none to them that we have no insurance. I have been combing my files for information to present for assistance before the chemo date comes.
He will be going through a phase called "Consolidation". He will not be getting the second stem cell transplant. Yeaaaa!!! He is at such a low risk now they do not feel it necessary. So, the process of chemo will be the same as before with carrying the bag for four days, having steroids and chemo by mouth for four days and then the visits to Infusion Center for daily labs and having the port flushed for at least three weeks. The only difference in the "Consolidation" is the chemo therapy doses won't be as strong. There is promise he will not lose his hair again.
Speaking of hair. He has a glow upon his head. It is growing back nicely and evenly. It does not look black, but silver. It also looks plentiful. He says he is growing it for me, but I really think he is just curious.
I feel phlegmatic the last couple of weeks with handling my mom's ordeal. Since my brothers have other things going on in their lives I have been signing papers for the nursing home and making calls to hospice, etc. I now find that physical therapy, a physician and other things are not in network under her medicare. For some reason, in November 2007, she changed her policy through social security. I believe they convinced her she would have more coverage with an HMO. I almost freaked out yesterday when they told me the only facility close to here she could be housed was Texarkana. That is way down south about two hours from here. I am still waiting on a call for confirmation we are set where I signed papers yesterday.
Poor ChemoSabe. Yesterday I left him again in the doctor's office. Our appt was at 1:30 and he was still there at 5:30 just waiting on a prescription. He has major numbness in his left leg and foot. He even claps his foot as he walks. The prescription seemed to help already as he slept better last night.
Keep continue to pray for us. I will be selfish today and ask for specific prayer for myself. That I will be strong enough physically, mentally and spiritually to continue on at the pace I am going. The nursing home will give me a relief from my three trips a day to visit her, but I will pick up new responsibilities in her care and also with ChemoSabe's upcoming process. I know it sounds like I am having a 'pity party'. So, for confirmation -- "Yes, I am." So please pray for my self centeredness (sp). That I may use that energy to focus on those that need me.
I believe if I could take an hour and go get my nails done I would feel better. I am two weeks over due! ha
Thank you and Love, Pepper!
DEFINITION: (adjective) sluggish and unemotional in temperament.
Ahh!!! The wheels keep turning. I believe I am a broken spoke. Clicking along and being bruised up on the way. Crooked without a hope of being straightened again. Yet, I remain strong because of the content I am made of.
ChemoSabe had his follow up visit yesterday. The journey continues. We begin chemo again on Friday, Nov. 7. It matters none to them that we have no insurance. I have been combing my files for information to present for assistance before the chemo date comes.
He will be going through a phase called "Consolidation". He will not be getting the second stem cell transplant. Yeaaaa!!! He is at such a low risk now they do not feel it necessary. So, the process of chemo will be the same as before with carrying the bag for four days, having steroids and chemo by mouth for four days and then the visits to Infusion Center for daily labs and having the port flushed for at least three weeks. The only difference in the "Consolidation" is the chemo therapy doses won't be as strong. There is promise he will not lose his hair again.
Speaking of hair. He has a glow upon his head. It is growing back nicely and evenly. It does not look black, but silver. It also looks plentiful. He says he is growing it for me, but I really think he is just curious.
I feel phlegmatic the last couple of weeks with handling my mom's ordeal. Since my brothers have other things going on in their lives I have been signing papers for the nursing home and making calls to hospice, etc. I now find that physical therapy, a physician and other things are not in network under her medicare. For some reason, in November 2007, she changed her policy through social security. I believe they convinced her she would have more coverage with an HMO. I almost freaked out yesterday when they told me the only facility close to here she could be housed was Texarkana. That is way down south about two hours from here. I am still waiting on a call for confirmation we are set where I signed papers yesterday.
Poor ChemoSabe. Yesterday I left him again in the doctor's office. Our appt was at 1:30 and he was still there at 5:30 just waiting on a prescription. He has major numbness in his left leg and foot. He even claps his foot as he walks. The prescription seemed to help already as he slept better last night.
Keep continue to pray for us. I will be selfish today and ask for specific prayer for myself. That I will be strong enough physically, mentally and spiritually to continue on at the pace I am going. The nursing home will give me a relief from my three trips a day to visit her, but I will pick up new responsibilities in her care and also with ChemoSabe's upcoming process. I know it sounds like I am having a 'pity party'. So, for confirmation -- "Yes, I am." So please pray for my self centeredness (sp). That I may use that energy to focus on those that need me.
I believe if I could take an hour and go get my nails done I would feel better. I am two weeks over due! ha
Thank you and Love, Pepper!
Monday, October 27, 2008
Adversity -- Word for the Day -- Monday, October 27, 2008
Adversity
DEFINITION: (noun) a state or condition that is contrary to one of well-being.
Hello, Children. I often remind myself when I write of my teachings in school that you should never begin a letter, document or article with an apology. With that first sentence out of the way I can now apologize for not writing sooner.
My mother is still in hospice. She was admitted, if you recall, on Tuesday, Oct. 14. We truly expected she would not make it to that weekend. Much to our surprise, she began eating again. Her eyes are now clear as glass, she speaks and is feeding herself. We were advised last week to visit with some nursing homes and decide where we want to place her. My older brother and I looked at four yesterday. What a depressing task.
She still does not know my older brother. She thinks he is a boyfriend. She surely recognizes my younger brother as 'her baby'. I am myself in the mornings and then in the afternoon she calls me by my younger brother's name. At times she makes sense of the adversity and at other times she is afraid and can't complete her sentences. She is quite seemingly healthy right now. She can get up with assistance and go to the restroom and is feeding herself regular food. She states she is ready to go home.
My sister-in-law was diagnosed with a brain tumor. She doesn't have feeling in her left leg. She was transferred to another hospital for rehab at which time she will receive chemo/radiation when her body is well enough.
I have been making trips to hospice three times a day. My body is dragging. My mind is gone and my patience is quite short. My older brother came in town again over the weekend so we could discuss more business and told ChemoSabe and me we could have Saturday off. With that, we called Rainman and Stretch and headed to north Arkansas on Saturday.
Saturday was a very, very cool day. When we departed home it was 49 deg. But what a beautiful day it turned out to be. We ended up in Harrison at a cemetery called MapleWood. It is full of maple trees and they colors were so vibrant. Although we didn't get home until 6:00 after leaving at 8:00 a.m., the long hours seemed to put us more at ease, per se.
Thank you for your calls, emails and prayers. We have another doctor's appt. for ChemoSabe tomorrow and hopefully I will know something about a facility for my mom soon. I believe that will be one of the hardest things in my life I will have to do.
The Lord builds me up and helps me to maintain my strength.
Good day and Love -- Pepper
DEFINITION: (noun) a state or condition that is contrary to one of well-being.
Hello, Children. I often remind myself when I write of my teachings in school that you should never begin a letter, document or article with an apology. With that first sentence out of the way I can now apologize for not writing sooner.
My mother is still in hospice. She was admitted, if you recall, on Tuesday, Oct. 14. We truly expected she would not make it to that weekend. Much to our surprise, she began eating again. Her eyes are now clear as glass, she speaks and is feeding herself. We were advised last week to visit with some nursing homes and decide where we want to place her. My older brother and I looked at four yesterday. What a depressing task.
She still does not know my older brother. She thinks he is a boyfriend. She surely recognizes my younger brother as 'her baby'. I am myself in the mornings and then in the afternoon she calls me by my younger brother's name. At times she makes sense of the adversity and at other times she is afraid and can't complete her sentences. She is quite seemingly healthy right now. She can get up with assistance and go to the restroom and is feeding herself regular food. She states she is ready to go home.
My sister-in-law was diagnosed with a brain tumor. She doesn't have feeling in her left leg. She was transferred to another hospital for rehab at which time she will receive chemo/radiation when her body is well enough.
I have been making trips to hospice three times a day. My body is dragging. My mind is gone and my patience is quite short. My older brother came in town again over the weekend so we could discuss more business and told ChemoSabe and me we could have Saturday off. With that, we called Rainman and Stretch and headed to north Arkansas on Saturday.
Saturday was a very, very cool day. When we departed home it was 49 deg. But what a beautiful day it turned out to be. We ended up in Harrison at a cemetery called MapleWood. It is full of maple trees and they colors were so vibrant. Although we didn't get home until 6:00 after leaving at 8:00 a.m., the long hours seemed to put us more at ease, per se.
Thank you for your calls, emails and prayers. We have another doctor's appt. for ChemoSabe tomorrow and hopefully I will know something about a facility for my mom soon. I believe that will be one of the hardest things in my life I will have to do.
The Lord builds me up and helps me to maintain my strength.
Good day and Love -- Pepper
Thursday, October 16, 2008
Prayer Update -- Thursday, October 16, 2008
My mother was moved to hospice on Tuesday. We sincerely believe her fall was the result of a stroke and that she had a major one on Saturday or Sunday while she was here. With her under the influence of morphine it was difficult for us to notice anything was wrong.
The doctors tell us her brain damage is massive. What we thought on Monday and were advised, was to be prepared to move to a nursing/rehab facility by Friday. After the neurologist looked over her scans extensively, they cancelled the MRI and told us about the damage and that hospice was our only choice. All tubes and IVs have been taken off of her.
To say the least, it has been traumatic on us three kids. My little brother especially since they live next door to each other and spent 3/4 of their days together. To add to his load, he had to take his wife to ER on Tuesday night with what they thought was a stroke. She is currently in surgery on her brain for what they believe is a tumor. The surgery takes six hours. He has cried and cried and about at his wits end because he wants to be with mom and torn to be with his wife. He is the one that is wheel chair bound.
Please continue to pray for us and our preparations. I truly believe my mother will be gone by Monday. We have spent some quality time with her. She makes sense at times and other times she is baby like in her talk. She had a good day today with her breathing, but her blood pressure shot up to 236/18 this morning so my older brother and I think she may have had another stroke.
She has been comical at times. She keeps jerking her clothes off. She is in a tent bed. It is like an upside down play pen with netting all around so she can't get out of bed. She couldn't walk anyway. She grabbed my hands the other night and said, "Kathy, take me". Yesterday she told my brother she wanted to go home. I told her I was leaving last night and she said, "Thats okay, honey, I'm alright." She sees nothing through her glaze covered eyes. I have taken photos of her and the camera flash doesn't even make her blink. She has not been aggressive and that is truly her nature. She has been quite meek and humble.
ChemoSabe has traveled the last two days. He feels bad he isn't here with me, but we just 'get up, brush ourselves off and go on'.
Thank you for your emails, calls and prayers. Keep 'em comin'.
Good night and Love -- Pepper
p.s. I pray she does not pass away on Saturday as that is my little brother's birthday.
The doctors tell us her brain damage is massive. What we thought on Monday and were advised, was to be prepared to move to a nursing/rehab facility by Friday. After the neurologist looked over her scans extensively, they cancelled the MRI and told us about the damage and that hospice was our only choice. All tubes and IVs have been taken off of her.
To say the least, it has been traumatic on us three kids. My little brother especially since they live next door to each other and spent 3/4 of their days together. To add to his load, he had to take his wife to ER on Tuesday night with what they thought was a stroke. She is currently in surgery on her brain for what they believe is a tumor. The surgery takes six hours. He has cried and cried and about at his wits end because he wants to be with mom and torn to be with his wife. He is the one that is wheel chair bound.
Please continue to pray for us and our preparations. I truly believe my mother will be gone by Monday. We have spent some quality time with her. She makes sense at times and other times she is baby like in her talk. She had a good day today with her breathing, but her blood pressure shot up to 236/18 this morning so my older brother and I think she may have had another stroke.
She has been comical at times. She keeps jerking her clothes off. She is in a tent bed. It is like an upside down play pen with netting all around so she can't get out of bed. She couldn't walk anyway. She grabbed my hands the other night and said, "Kathy, take me". Yesterday she told my brother she wanted to go home. I told her I was leaving last night and she said, "Thats okay, honey, I'm alright." She sees nothing through her glaze covered eyes. I have taken photos of her and the camera flash doesn't even make her blink. She has not been aggressive and that is truly her nature. She has been quite meek and humble.
ChemoSabe has traveled the last two days. He feels bad he isn't here with me, but we just 'get up, brush ourselves off and go on'.
Thank you for your emails, calls and prayers. Keep 'em comin'.
Good night and Love -- Pepper
p.s. I pray she does not pass away on Saturday as that is my little brother's birthday.
Monday, October 13, 2008
PRAYER REQUEST -- Pepper's Mom -- Monday, October 13, 2008
We had our tests (bone marrow biopsy and MRI) on Friday. Labs came back good, but the WBC has dropped to 4.9. ChemoSabe has been having some numbness and tingling in his feet, legs and hands. Saturday he got up out of his recliner and fell forward across the carpet. Our transplant RN has advised us to discontinue the Thalidomide. Damaging nerve endings is a side affect. After our doctor's visit tomorrow they will probably reduce the dose.
We hear through the grapevine that his second transplant will be held off until January. We assume he will still be doing the bridging therapy which are meds.
While we were waiting for the MRI we received a call that my 80 year old mom had fallen and was being transported by ambulance. She has broken her arm just below the shoulder. I met my son in ER and then went back for ChemoSabe. My son brought her to my house and we made her comfortable. Sometime in the wee hours of the morning on Sunday I heard her trying to trash around. I thought maybe the pain meds from ER had worn off. Sunday afternoon when my older brother from Ft. Smith arrived we decided to call an ambulance. The result is she has had a massive stroke. The doctor reports today we need to find a nursing/rehab facility to be prepared by the end of the week. She won't be going home.
My mother is a very strong willed, independent woman from having raised three children alone. She is a very opinionated individual and would nail you at the drop of a hat. With this the doctor's have told us it looks as if she has had multiple mini-strokes over the years and with her character she would just pick herself up, brush herself off and go on about her way. This time she cannot do that.
She seems to recognize my older brother and she responds to him with, "NO!". The rest of her language is gibberish. My younger brother has been hit most profoundly by this because he is her baby. And, I truly mean that in the strongest sense of the word. They live only a few hundreds yards from each other and they talk on the phone at least 15 times a day, according to my mom. He takes her shopping, sits on the deck with her, argues with her and just plain loves her in a way I have never seen. He feels helpless. He is a Reiter's Syndrome patient and has been wheelchair bound since 1997. After about eight years in the chair, with ChemoSabe's guidance, he had both hips replaced and is at least able to walk some.
I am closing now so I can get back to the ICU. I just wanted to ask your prayers for her and for our visit tomorrow. Please pray for our strength in making the decisions for her and for mine and ChemoSabe's strength in getting through the treatment process.
Good day and Love -- Pepper
We hear through the grapevine that his second transplant will be held off until January. We assume he will still be doing the bridging therapy which are meds.
While we were waiting for the MRI we received a call that my 80 year old mom had fallen and was being transported by ambulance. She has broken her arm just below the shoulder. I met my son in ER and then went back for ChemoSabe. My son brought her to my house and we made her comfortable. Sometime in the wee hours of the morning on Sunday I heard her trying to trash around. I thought maybe the pain meds from ER had worn off. Sunday afternoon when my older brother from Ft. Smith arrived we decided to call an ambulance. The result is she has had a massive stroke. The doctor reports today we need to find a nursing/rehab facility to be prepared by the end of the week. She won't be going home.
My mother is a very strong willed, independent woman from having raised three children alone. She is a very opinionated individual and would nail you at the drop of a hat. With this the doctor's have told us it looks as if she has had multiple mini-strokes over the years and with her character she would just pick herself up, brush herself off and go on about her way. This time she cannot do that.
She seems to recognize my older brother and she responds to him with, "NO!". The rest of her language is gibberish. My younger brother has been hit most profoundly by this because he is her baby. And, I truly mean that in the strongest sense of the word. They live only a few hundreds yards from each other and they talk on the phone at least 15 times a day, according to my mom. He takes her shopping, sits on the deck with her, argues with her and just plain loves her in a way I have never seen. He feels helpless. He is a Reiter's Syndrome patient and has been wheelchair bound since 1997. After about eight years in the chair, with ChemoSabe's guidance, he had both hips replaced and is at least able to walk some.
I am closing now so I can get back to the ICU. I just wanted to ask your prayers for her and for our visit tomorrow. Please pray for our strength in making the decisions for her and for mine and ChemoSabe's strength in getting through the treatment process.
Good day and Love -- Pepper
Wednesday, October 8, 2008
Anomaly -- Word for the Day -- Wednesday, October 8, 2008
Anomaly
DEFINITION: (noun) something different or irregular.
Hello, Children. Again, I have not written in a while even after I promised you I wouldn't keep you hanging again. If I keep this up you will get out of the habit of reading. My fault if that happens.
Labs yesterday shows WBC at 4.5 with platelets still at a massive 155. Crap (CRP) is <5. He is still doing well.
DEFINITION: (noun) something different or irregular.
Hello, Children. Again, I have not written in a while even after I promised you I wouldn't keep you hanging again. If I keep this up you will get out of the habit of reading. My fault if that happens.
Labs yesterday shows WBC at 4.5 with platelets still at a massive 155. Crap (CRP) is <5. He is still doing well.
Friday we have labs, the dreaded bone marrow biopsy and an MRI. We have our follow up doctor visit on Tuesday. We have made up our minds to be adamant about holding off on the second stem cell transplant until after January.
Our insurance matters still seem to plague us. Our insurance company has two stories on ChemoSabe's prescriptions. I can go to one pharmacy with no problem and pay just a few dollars (like $9.00) and the other pharmacy claims we have reached our yearly limit and I have to pay $2,500 for one and $2,800 for others. The pharmacies get different stories from the insurance company -- our coverage picks back up on Oct. 1 or Jan. 1. When I speak to the insurance company myself over the phone they indicate coverage is the same as the medical insurance -- calendar year, beginning Jan. 1. BUT, I received a letter from the same insurance company the day before my call to them and it clearly indicates the prescription coverages begins Oct. 1.
Here is the advice from the case manager at the insurance company. If you are requested to pay the lowest, don't ask questions. If you are requested to pay the highest, pay it. Wow, why couldn't I have thought of that? She also informed me when we are asked to pay the lowest, she wanted the name of the person we talk to at her insurance firm. I told her I already knew the name --- God!
So, this is where anomaly comes in. Insurance can't keep up with themselves.
We have been enjoying ChemoSabe's time off from the daily UAMS visits. He is still doing his weekly labs, bridging meds and nightly blood thinner shots. I have given him about four more bruises. I believe his blood is so thin that it is causing the bruising. The shots are not hurting him. In fact, he doesn't even feel them when I insert the needle, but.....
We have been riding every weekend. I believe I told you about the Bikes, Blues and BBQ in Fayetteville the last weekend of Sept. This last weekend ChemoSabe made plans with a client of his for us to meet up with him and two other bikes to go up to Mt. Magazine. About 100 miles one way. ChemoSabe worked and worked on the bikes. Cleaning, spit shining, polishing the leather and our chaps, etc. Chance of rain -- 20%. We got all suited up and the bottom fell out of the sky. Ended up spending the afternoon on the couch watching rented movies. Two horrible ones. Leatherheads with George Clooney and Deception with Hugh Jackman.
Sunday morning late, we rounded ourselves up and the two of us rode up there alone. Yes, we skipped church. It was a crisp, beautiful day. We went up the scenic highway and it was like ole times with Poppy. We left about 11:30 after he fixed his famous bacon. We stopped halfway and got our favorite travel snack -- gizzards. We got home around 8:30 p.m. with sore tails and big smiles.
ChemoSabe has been working full steam ahead. He traveled every day last week as far out as Memphis and Shreveport. This week has been ultimately the same. To him this is an anomaly from his regular schedule at UAMS. He is also back to some late night calls and times of getting up in the middle of the night and disappearing from the house. HE LOVES IT!
He looks healthy and is eating quite healthy. In turn, so am I. I have tried to cut down, but I tend to nibble on dinner while I am waiting for him to come home and then I eat with him when he arrives. AND, of course, since his appetite is good for now, I have also been serving dessert. He stays slim and I am growing. I think I heard my bike groan when I got on it the other day or could it have been the rubber stretching on the tires?
Please continue to pray for us and our decisions next week. Please also continue to pray for our MM friends.
Good night and Love -- Pepper
Monday, September 29, 2008
PRAYER FOR BILLY -- Monday, September 29, 2008
Billy is doing a lot better with improving appetite. He has lost approximately 20 lb in the last few weeks. He still cannot get up because of dropping blood pressure. The information they are getting is the stroke was caused from a drop in blood pressure. He is in a facility located only a few miles from his home. Please continue to pray for his improvement.
ChemoSabe is still going in for weekly labs and getting very, very good reports. He is full speed ahead at work and will be traveling each day this week. He is not home as I write. He began his steroids again for four days on Saturday so for that I am thankful with his busy week. I just hope he takes the time to eat and keep his strength up while on the road.
We have heard from Roger (Oklahoma) and he went home on the 24th with no meds except for his heart meds. He will be coming back around Nov. 30 for his second stem cell transplant. They think he will be done by Christmas. He had a rough few weeks with a rash, high fever and chills. I have heard that from a few patients and after the rash their skin peels like a sunburn. ChemoSabe did that on his wrist surgery and it was the Keflex and Oxycodone. Which takes us back to --- if the illness doesn't kill you, the medication will.
We had a wonderful weekend as we traveled on the bikes to Fayetteville for the Bikes, Blues and BBQ festival. We stayed at my older brother's in Ft. Smith which is about 65 miles away from Fayetteville (home of the Razorback losing team). He was so happy we stayed he even made parking signs for the bikes -- "Kemosabe" and "Kat". He made us breakfast each morning and his brother-in-law fixed burgers on Saturday night. They gave up their bedroom and bath to us and it was better than staying in a high dollar suite.
Saturday we met Rainman and Stretch along with eight other bikes and we took off into the Ozark mountains and headed up to the Missouri border. The weather could not have been better. On our trip home on Sunday, ChemoSabe and I came through the back way around the Ouachita National Forest and around to Hot Springs, then home.
ChemoSabe made the trip like old times as he had good energy, good color and felt good the whole trip. I was with Poppy all weekend.
The dogs were furious with us when we returned. Sissy was our sitter and she did a heck of a job, but they love mommy and daddy. I gave the three little ones a shower yesterday and they crashed the rest of the evening. Parker is having a sick spell today with his sugar levels. What use to be once a couple of months, now has turned into once every two weeks. I believe he ate a half gallon of grass this morning so I had to leave him out with Maxie during the day.
We have been so discouraged with hearing about Billy's problems that we are considering asking the doc about not doing a second stem cell. ChemoSabe feels his body is just not ready. Will they refuse us future treatment if we dictate our preference? Well, what can they do? We don't have insurance so most physicians would not want to treat you anyway. That will be a Paul Harvey ending. We have a MRI and bone marrow set for October 10 with a follow up visit with the Big Dog on October 14. That tells me if all the reports are okay they would want to do the transplant the following week. He would have to be off the Thalidomide for seven days before the transplant. His body and mind is just not ready for another massive dose of the Melphanin chemo.
Well, need to do some house work I put off so we could play over the weekend. I will try to do better about writing.
Good night and Love -- Pepper
ChemoSabe is still going in for weekly labs and getting very, very good reports. He is full speed ahead at work and will be traveling each day this week. He is not home as I write. He began his steroids again for four days on Saturday so for that I am thankful with his busy week. I just hope he takes the time to eat and keep his strength up while on the road.
We have heard from Roger (Oklahoma) and he went home on the 24th with no meds except for his heart meds. He will be coming back around Nov. 30 for his second stem cell transplant. They think he will be done by Christmas. He had a rough few weeks with a rash, high fever and chills. I have heard that from a few patients and after the rash their skin peels like a sunburn. ChemoSabe did that on his wrist surgery and it was the Keflex and Oxycodone. Which takes us back to --- if the illness doesn't kill you, the medication will.
We had a wonderful weekend as we traveled on the bikes to Fayetteville for the Bikes, Blues and BBQ festival. We stayed at my older brother's in Ft. Smith which is about 65 miles away from Fayetteville (home of the Razorback losing team). He was so happy we stayed he even made parking signs for the bikes -- "Kemosabe" and "Kat". He made us breakfast each morning and his brother-in-law fixed burgers on Saturday night. They gave up their bedroom and bath to us and it was better than staying in a high dollar suite.
Saturday we met Rainman and Stretch along with eight other bikes and we took off into the Ozark mountains and headed up to the Missouri border. The weather could not have been better. On our trip home on Sunday, ChemoSabe and I came through the back way around the Ouachita National Forest and around to Hot Springs, then home.
ChemoSabe made the trip like old times as he had good energy, good color and felt good the whole trip. I was with Poppy all weekend.
The dogs were furious with us when we returned. Sissy was our sitter and she did a heck of a job, but they love mommy and daddy. I gave the three little ones a shower yesterday and they crashed the rest of the evening. Parker is having a sick spell today with his sugar levels. What use to be once a couple of months, now has turned into once every two weeks. I believe he ate a half gallon of grass this morning so I had to leave him out with Maxie during the day.
We have been so discouraged with hearing about Billy's problems that we are considering asking the doc about not doing a second stem cell. ChemoSabe feels his body is just not ready. Will they refuse us future treatment if we dictate our preference? Well, what can they do? We don't have insurance so most physicians would not want to treat you anyway. That will be a Paul Harvey ending. We have a MRI and bone marrow set for October 10 with a follow up visit with the Big Dog on October 14. That tells me if all the reports are okay they would want to do the transplant the following week. He would have to be off the Thalidomide for seven days before the transplant. His body and mind is just not ready for another massive dose of the Melphanin chemo.
Well, need to do some house work I put off so we could play over the weekend. I will try to do better about writing.
Good night and Love -- Pepper
Sunday, September 28, 2008
PRAYER REQUEST -- Sunday, September 28, 2008
We received an update on our friend, Billy Smith, from Alabama. I had left his wife a message last week and never heard back from her. We did hear from her today and were advised when Billy had his port pulled three weeks ago, the same week as ChemoSabe, they were on their way home and got as far as Memphis. Billy had a stroke and has been in and out of the hospital since. He was paralyzed on one side which was a result of a bi-lateral stroke. I will be finding out more in the next couple of days.
It was the first time the RN that pulled his port had ever done the procedure. It is just my opinion, but I believe it might have been the result of a blood clot. I am thankful ChemoSabe in still on the stomach shots.
I am putting his photo at the top of the page so you can see for whom you pray.
Please pray for Billy and Sherry. It has been a hard road for them the last three weeks. I will keep you posted.
Good night and Love -- Pepper.
It was the first time the RN that pulled his port had ever done the procedure. It is just my opinion, but I believe it might have been the result of a blood clot. I am thankful ChemoSabe in still on the stomach shots.
I am putting his photo at the top of the page so you can see for whom you pray.
Please pray for Billy and Sherry. It has been a hard road for them the last three weeks. I will keep you posted.
Good night and Love -- Pepper.
Monday, September 22, 2008
Insurance -- Word for the Day -- Monday, September 22, 2008
Insurance
Definition: coverage by contract whereby one party undertakes to indemnify or guarantee another against loss by a specified contingency or peril
Hummmm.... Doesn't make much sense, does it, this word -- Insurance? We struggle again, today, with this deal and the matter of non compassionate individuals with the medical facility. It doesn't matter if you make monthly payments -- they set the minimum. I do not know how people without total insurance survive.
Enough of that.... Now to the good news.
Stacie is improving each day. She was moved into a brain rehab facility. Her therapists are meeting tomorrow to make a decision on her length of stay. She does remember what year it is. The main focus right now is the physical therapy and it is progressing each day. She is walking with a walker and can take a shower without assistance.
Stacie and her husband, Bruce had been married for five years. He is a marine and she is a former marine. What does that tell you? They are fierce in their struggle for survival. With that, I know your prayers have made her stronger and she will continue to improve.
ChemoSabe has been doing extremely well, also. He does get tired, but not nearly as much as before. He is now down to two pills in the morning and five at night with his nightly Lovenox (blood thinner) shot. I have given him another small bruise, but I believe I am getting better. He doesn't flinch like he use to.
If you have ever looked at a syringe needle closely you will notice a slight slant to the tip. I think I have figured out if you put the very longest, sharpest point in slowly, it pricks the skin slowly and eliminates the bruising effect. I have seen some nurses just jab it in quickly. I just can't do that. I'm afraid I will miss and hit my own finger! ha It makes me wonder how many bruises in the last two years I have given Parker. He is our silkie and he has long black hair. He gets two shots a day in his shoulder area.
We took advantage of the cooler weather and got out on the bikes Saturday. We rode up past Heber Springs to our favorite bike shop. We wore our chaps and a light jacket. It was a very overcast day and we did have a few sprinkles, BUT, that didn't stop us from getting a burn on the ole forehead. Our cheeks got the brunt of it, too. All-in-all it was a great day to ride.
ChemoSabe spoke with his Transplant RN this morning and she is indicating that one of the doctors and herself feel he can wait until after January to have the second transplant. They are pushing us to talk to the Big Doc about it. With his reports being clear of the Myeloma and their big word is "Remission", they are certain he will be safe. Wouldn't it be great to have that time for his body to recover from the massive chemo treatments he has had? Cross your fingers. We don't have an appointment date, yet.
I have been burning piles of limbs, leaves and twigs in the back yard from Gustav and Ike. It still looks bad back there. AND, the mosquitoes are massive. I even have had to spray insect repellent on the kids (dogs). These things just hover around you. I can spray my whole body and they always find at least 1 cm uncovered and they go in for the kill. Kinda makes me wish now I wouldn't have had my head shaved.
ChemoSabe's hair is growing back. His eyebrows are coming in very quickly. He has begun to shave his whiskers again, also. He keeps shaving his head in spite of the fact I wanted to see what color and texture it is. It is the reverse from when he didn't want to lose his hair. He has gone from one extreme to the other.
His appetite has also come back. I have to watch him though when we go out to make certain he doesn't order more than he can eat. I don't believe his stomach has grown back to what it was. I am certainly glad he doesn't get rid of the clothes he grows out of, as now he is back into them. The Thin Man is he.
Nothing more exciting right now. We are just enjoying the 'feel good' and catching up on work.
Please keep praying for Stacie, our other MM friends and for my little brother's granddaughter. He and his wife adopted her when she was a baby. She is now six. She has been in the hospital since last Thursday and it is believed she has spinal meningitis. Since she may be in the contagious stage and because she is a sick child, ChemoSabe and I cannot be around her. I will keep you posted.
Good day and Love, Pepper
Definition: coverage by contract whereby one party undertakes to indemnify or guarantee another against loss by a specified contingency or peril
Hummmm.... Doesn't make much sense, does it, this word -- Insurance? We struggle again, today, with this deal and the matter of non compassionate individuals with the medical facility. It doesn't matter if you make monthly payments -- they set the minimum. I do not know how people without total insurance survive.
Enough of that.... Now to the good news.
Stacie is improving each day. She was moved into a brain rehab facility. Her therapists are meeting tomorrow to make a decision on her length of stay. She does remember what year it is. The main focus right now is the physical therapy and it is progressing each day. She is walking with a walker and can take a shower without assistance.
Stacie and her husband, Bruce had been married for five years. He is a marine and she is a former marine. What does that tell you? They are fierce in their struggle for survival. With that, I know your prayers have made her stronger and she will continue to improve.
ChemoSabe has been doing extremely well, also. He does get tired, but not nearly as much as before. He is now down to two pills in the morning and five at night with his nightly Lovenox (blood thinner) shot. I have given him another small bruise, but I believe I am getting better. He doesn't flinch like he use to.
If you have ever looked at a syringe needle closely you will notice a slight slant to the tip. I think I have figured out if you put the very longest, sharpest point in slowly, it pricks the skin slowly and eliminates the bruising effect. I have seen some nurses just jab it in quickly. I just can't do that. I'm afraid I will miss and hit my own finger! ha It makes me wonder how many bruises in the last two years I have given Parker. He is our silkie and he has long black hair. He gets two shots a day in his shoulder area.
We took advantage of the cooler weather and got out on the bikes Saturday. We rode up past Heber Springs to our favorite bike shop. We wore our chaps and a light jacket. It was a very overcast day and we did have a few sprinkles, BUT, that didn't stop us from getting a burn on the ole forehead. Our cheeks got the brunt of it, too. All-in-all it was a great day to ride.
ChemoSabe spoke with his Transplant RN this morning and she is indicating that one of the doctors and herself feel he can wait until after January to have the second transplant. They are pushing us to talk to the Big Doc about it. With his reports being clear of the Myeloma and their big word is "Remission", they are certain he will be safe. Wouldn't it be great to have that time for his body to recover from the massive chemo treatments he has had? Cross your fingers. We don't have an appointment date, yet.
I have been burning piles of limbs, leaves and twigs in the back yard from Gustav and Ike. It still looks bad back there. AND, the mosquitoes are massive. I even have had to spray insect repellent on the kids (dogs). These things just hover around you. I can spray my whole body and they always find at least 1 cm uncovered and they go in for the kill. Kinda makes me wish now I wouldn't have had my head shaved.
ChemoSabe's hair is growing back. His eyebrows are coming in very quickly. He has begun to shave his whiskers again, also. He keeps shaving his head in spite of the fact I wanted to see what color and texture it is. It is the reverse from when he didn't want to lose his hair. He has gone from one extreme to the other.
His appetite has also come back. I have to watch him though when we go out to make certain he doesn't order more than he can eat. I don't believe his stomach has grown back to what it was. I am certainly glad he doesn't get rid of the clothes he grows out of, as now he is back into them. The Thin Man is he.
Nothing more exciting right now. We are just enjoying the 'feel good' and catching up on work.
Please keep praying for Stacie, our other MM friends and for my little brother's granddaughter. He and his wife adopted her when she was a baby. She is now six. She has been in the hospital since last Thursday and it is believed she has spinal meningitis. Since she may be in the contagious stage and because she is a sick child, ChemoSabe and I cannot be around her. I will keep you posted.
Good day and Love, Pepper
Tuesday, September 16, 2008
PRAYER REQUEST FOR STACIE -- Tuesday, September 16, 2008
We are asking for a special prayer request for ChemoSabe's V.P., Mrs. T. I have spoken of her before in that she comes into town to help him out when he is not able.
Mrs. T. has a son in the military. He and his wife, Stacie, were jogging this week and she ran ahead of him. She slipped and fell which put a hole in her head. It caused swelling in the brain. When she became conscious her last recollection was back to 2001.
Please pray massively for this young lady. Pray especially for her husband and family. Pray they will have the strength and courage to withstand whatever may come to them. Pray she will be lifted up and healed with God's special power. Please pray for Mrs. T. She is such a very special person in our lives.
I have posted Mrs. T's photo so you can know for whom you will be praying.
Good night and Love -- Pepper (Kathy)
Mrs. T. has a son in the military. He and his wife, Stacie, were jogging this week and she ran ahead of him. She slipped and fell which put a hole in her head. It caused swelling in the brain. When she became conscious her last recollection was back to 2001.
Please pray massively for this young lady. Pray especially for her husband and family. Pray they will have the strength and courage to withstand whatever may come to them. Pray she will be lifted up and healed with God's special power. Please pray for Mrs. T. She is such a very special person in our lives.
I have posted Mrs. T's photo so you can know for whom you will be praying.
Good night and Love -- Pepper (Kathy)
Abbreviate -- Word for the Day -- Tuesday, September 16, 2008
Abbreviate
DEFINITION: (verb) to make briefer, to shorten.
Seems each time I write lately I am apologizing for the length of time in between the updates. Reason? We have been enjoying our time off from UAMS!! Hoorah! I will try to abbreviate the update as I have a lot to catch up on.
ChemoSabe is going to lab once a week, on Mondays. His counts have been very well. Yesterday his WBC was 7.5 and his platelets were 183. Massively high which means it is good. His meds have been cut down through the bridging process. He is now at two pills in the morning and six in the evening. We have added Geritol for extra iron and energy (my idea with the doc's approval). I believe it has helped his appetite, too.
He is working full steam ahead. Last week he made a trip to Shreveport on Monday and Thursday and a mid week trip to Eudora. The Shreveport is a four hour trip, one way. He was a champ. Since he was on the steroids the first part of the week, he still had energy when he got home.
Friday night we were riding to Hot Springs for a bike rally. It started to sprinkle so we stopped at a restaurant we frequent. As we began to eat the skies opened up and the bottom fell out. It stormed for about 30 minutes, heavily. We did not abbreviate our meal. We didn't continue on to Hot Springs. It didn't rain anymore, but the bikes sure got dirty from the damp roads.
We looked at Harleys on Saturday. I was sitting on a massive one and a little sales girl asked if I needed any help. I told her I would only if I dropped the bike. She got a sour look on her face and left. It rained massively that day as well with tornado warnings at our neighborhood. No, we weren't on the bikes.
Sunday was a beautiful day. I can't say the same for our yard. Limbs, huge branches and leaves cluttered the yard from the night before. We went to church and when we got home I got my back pack blower out and went to work. After about two hours of that and ChemoSabe wiping off the bikes, we decided it was time to ride. We rode out to see Roger and Ruthie. We overstayed our visit, but only because we truly enjoyed their company. Roger's WBC was 0.06..... He has about two weeks to go before he will be coming back up good.
I am still giving ChemoSabe his Lovenox stomach shots (blood thinner) nightly. He has bragged to the RNs that my shots don't hurt or bruise him. Well, Sunday night I gave him a shot and he flinched. When he pulled up his shirt last night for his dose a golf ball sized black/blue spot jumped out at me. It truly brought tears to my eyes. I apologized to him immediately and being his good natured self he just said, 'those things happen". I could hardly bring myself to give him the next shot through my tear filled sockets, but I had to.
The last week it has been like old times with Poppy. We have laughed at the simplest things and have enjoyed the cooler weather. He has been helping out a bit more at the house. Well, actually helping out with the chores he likes more than what needs to be done. He cleans on the bikes, cleans his truck, shines my boots and piddles in the yard. He has done the dishes a time or two, but grumbles as he goes.
We watched Coco Chanel last night and it was a pretty good movie. It reminded me of my aunt which lives about two hours from us. As I was growing up my most vivid memory of her was she wore Chanel #5. Because of that, I thought she was one of the richest women in the world. She is very rich in character and compassion. I wanted so much to be like her that I dyed my hair jet-black, like hers, when I was a senior in high school. My mother almost pulled me bald for that. Whew! My natural color was ash blond. Now it is ash white! ha
ChemoSabe's stubble is coming back. I have asked him to let it grow a little so we can see if it has changed texture or color. He wants to keep it shaved. I believe he fears it will be wispy as some of the others we have seen. I promised him if it doesn't come back in evenly I will let him know. AND, I had mine cut two weeks ago. It is about 1/4 in. all over. After 36 hours without power I got tired of trying to fix the hump in the back. I now tell everyone I fell off the new riding mower and got my head caught in the blades.
ChemoSabe was in the shower last week and scrubbed his forehead with a face cloth. As he did he pulled back when he remembered his thinning eyebrows. TOO LATE! He had scrubbed the three or four he had completely out. When he looked in the mirror he claimed he saw a couple so he took the electric razor and shaved his eyebrows. I just about fell out. I told him how they would grow back massively over his forehead if he continued to shave.
He has lost his arm pit hair, legs and arms hairs. He still has chest hair, but everywhere else is absolutely vacant. He feels the prickly coming back and I demonstrated to him last night how he would be walking pretty soon. Snork!!
Hey.... My sun roof leaked again last week in the bout with Ike. I took it in again on Friday and basically dared them to charge me after they indicated the problem might not be warranty. With a huff and puff I turned and went back home. We took it out deliberately in the rain on Saturday and thus far, no leaks. They claimed they had replaced the whole roof the week before, so how does a leak happen after that? Well, the gasket wasn't tight enough.. I'm telling you --- it's a woman thing. The next time Poppy will be taking it back. I am still aggravated that I paid $20 to have it washed two weeks ago and I could have spit on it and got it cleaner. I washed it after I got it home.
Which brings me back to --- "Why Count Your Blessings When You Can Complain?"
How did I do with abbreviated version for the last week? Good, huh?
Good day and Love -- Pepper.
p.s. God is good all the time and all the time God is good.
DEFINITION: (verb) to make briefer, to shorten.
Seems each time I write lately I am apologizing for the length of time in between the updates. Reason? We have been enjoying our time off from UAMS!! Hoorah! I will try to abbreviate the update as I have a lot to catch up on.
ChemoSabe is going to lab once a week, on Mondays. His counts have been very well. Yesterday his WBC was 7.5 and his platelets were 183. Massively high which means it is good. His meds have been cut down through the bridging process. He is now at two pills in the morning and six in the evening. We have added Geritol for extra iron and energy (my idea with the doc's approval). I believe it has helped his appetite, too.
He is working full steam ahead. Last week he made a trip to Shreveport on Monday and Thursday and a mid week trip to Eudora. The Shreveport is a four hour trip, one way. He was a champ. Since he was on the steroids the first part of the week, he still had energy when he got home.
Friday night we were riding to Hot Springs for a bike rally. It started to sprinkle so we stopped at a restaurant we frequent. As we began to eat the skies opened up and the bottom fell out. It stormed for about 30 minutes, heavily. We did not abbreviate our meal. We didn't continue on to Hot Springs. It didn't rain anymore, but the bikes sure got dirty from the damp roads.
We looked at Harleys on Saturday. I was sitting on a massive one and a little sales girl asked if I needed any help. I told her I would only if I dropped the bike. She got a sour look on her face and left. It rained massively that day as well with tornado warnings at our neighborhood. No, we weren't on the bikes.
Sunday was a beautiful day. I can't say the same for our yard. Limbs, huge branches and leaves cluttered the yard from the night before. We went to church and when we got home I got my back pack blower out and went to work. After about two hours of that and ChemoSabe wiping off the bikes, we decided it was time to ride. We rode out to see Roger and Ruthie. We overstayed our visit, but only because we truly enjoyed their company. Roger's WBC was 0.06..... He has about two weeks to go before he will be coming back up good.
I am still giving ChemoSabe his Lovenox stomach shots (blood thinner) nightly. He has bragged to the RNs that my shots don't hurt or bruise him. Well, Sunday night I gave him a shot and he flinched. When he pulled up his shirt last night for his dose a golf ball sized black/blue spot jumped out at me. It truly brought tears to my eyes. I apologized to him immediately and being his good natured self he just said, 'those things happen". I could hardly bring myself to give him the next shot through my tear filled sockets, but I had to.
The last week it has been like old times with Poppy. We have laughed at the simplest things and have enjoyed the cooler weather. He has been helping out a bit more at the house. Well, actually helping out with the chores he likes more than what needs to be done. He cleans on the bikes, cleans his truck, shines my boots and piddles in the yard. He has done the dishes a time or two, but grumbles as he goes.
We watched Coco Chanel last night and it was a pretty good movie. It reminded me of my aunt which lives about two hours from us. As I was growing up my most vivid memory of her was she wore Chanel #5. Because of that, I thought she was one of the richest women in the world. She is very rich in character and compassion. I wanted so much to be like her that I dyed my hair jet-black, like hers, when I was a senior in high school. My mother almost pulled me bald for that. Whew! My natural color was ash blond. Now it is ash white! ha
ChemoSabe's stubble is coming back. I have asked him to let it grow a little so we can see if it has changed texture or color. He wants to keep it shaved. I believe he fears it will be wispy as some of the others we have seen. I promised him if it doesn't come back in evenly I will let him know. AND, I had mine cut two weeks ago. It is about 1/4 in. all over. After 36 hours without power I got tired of trying to fix the hump in the back. I now tell everyone I fell off the new riding mower and got my head caught in the blades.
ChemoSabe was in the shower last week and scrubbed his forehead with a face cloth. As he did he pulled back when he remembered his thinning eyebrows. TOO LATE! He had scrubbed the three or four he had completely out. When he looked in the mirror he claimed he saw a couple so he took the electric razor and shaved his eyebrows. I just about fell out. I told him how they would grow back massively over his forehead if he continued to shave.
He has lost his arm pit hair, legs and arms hairs. He still has chest hair, but everywhere else is absolutely vacant. He feels the prickly coming back and I demonstrated to him last night how he would be walking pretty soon. Snork!!
Hey.... My sun roof leaked again last week in the bout with Ike. I took it in again on Friday and basically dared them to charge me after they indicated the problem might not be warranty. With a huff and puff I turned and went back home. We took it out deliberately in the rain on Saturday and thus far, no leaks. They claimed they had replaced the whole roof the week before, so how does a leak happen after that? Well, the gasket wasn't tight enough.. I'm telling you --- it's a woman thing. The next time Poppy will be taking it back. I am still aggravated that I paid $20 to have it washed two weeks ago and I could have spit on it and got it cleaner. I washed it after I got it home.
Which brings me back to --- "Why Count Your Blessings When You Can Complain?"
How did I do with abbreviated version for the last week? Good, huh?
Good day and Love -- Pepper.
p.s. God is good all the time and all the time God is good.
Sunday, September 7, 2008
Obtrusive - Word for the Day -- Sunday, September 7, 2008
Obtrusive
DEFINITION: (adjective) overly prominent.
What an obtrusive storm Gustav became! We were without power early Wednesday until late Friday (36 hours). Son and friend brought us over a generator late Wed afternoon. I told them all I was worried about was "America's Got Talent". Ha... They hooked up the freezer, the refrigerator and yep... the TV... My baby boy does anything for mama...
Through all this, ChemoSabe worked half days and then to clinic. We saw the doctor on Thursday afternoon and he is discharged for a month only. We have about four weeks and then the chemo and second stem cell will begin. We started the bridging medications yesterday. Chemo by mouth, steroids and bacterial prevention. The dose of blood thinner (Lovenox) was increased from 80 to 150 a day. I had pharmacy chores on Friday while he went out of town on business. I made the Outpatient pharmacy, the Infusion Center pharmacy and then our hometown pharmacy.
We were instructed to purchase a blood pressure machine because ChemoSabe will only be doing labs once a week. His blood pressure has always run low for years, but they are not convinced of that. So, I got one and we are doing both our pressure each evening. I learned something about myself with it already. I have a history of migraines, but I only have them now about every six months. I started getting one on Wednesday. It kept trying to creep up until Friday. When we took our pressures on Friday evening mine was sky high. Hmmmm... I wonder why? ha
We were lucky with the storm besides losing power. We had a lot of limbs down and I got them all taken care of in the front yard. I worked all day yesterday with the new rider mower. What an awesome machine. I haven't even started on the back yard. It will be a week long job.
ChemoSabe's counts are well. His CRP was at 35 on Thursday, but they scheduled his port to be removed anyway. We got outta there around 5:30 p.m. I didn't give him any Lovenox on Tuesday and Wednesday because of the possibility of having the port pulled. By Thursday evening his legs were giving him fits. We got up around 3:30 Friday a.m. and I gave him a Lovenox, but on Friday night they were hurting again. Yesterday morning he was still in discomfort. Hurting in the calves was very obtrusive. I made his breakfast. I convinced him he needed to walk around much of the day to keep up the circulation instead of sitting in the recliner. The pain is at night when he is relaxing. Well, he got out in the yard and piddled while I was on the mower. He shoveled a little dirt...and I mean little. About four shovel fulls. He pulled up some weeds and picked up a few limbs. He huffed and puffed a bit. I had helped him put his bike up on the rake and he came up to the garage. He polished and waxed on it. By the end of the day he was feeling a lot better. He got a full night's sleep without having to go downstairs to the recliner.
He slept so good we were able to go to church this morning. And, what a sermon it was. KJ, my boss, is the preacher and he was on a roll today. Afterward we met them for lunch and had an enjoyable rest of the day.
Heard from Roger today and he had his stem cell on Friday. He has been having the hiccups (sound familiar?) and stomach problems, but seems to be doing okay. There are three others that are in our time frame that are having high CRPs. It looks like everyone is right on schedule. Just doesn't seem right that you have to be very, very ill to be normal at this stage. That's protocol.
The steroids are working on ChemoSabe already. He will be a job keeping down this week. He is traveling to Shreveport tomorrow. He has already rescheduled his lab for this week so he can do some work. His appetite has increased and he seems to be enjoying food more the last couple of days. He is having some problem with acid reflux, but I believe that is because of the steroid.
Well, kids... I am going to hit the rack early. I just bathed Parker and Kipper and now I need to take care of Maxie and Pete.
Keep those prayers coming. Especially for our friends still going through the first phase.
Good night and Love --- Pepper
DEFINITION: (adjective) overly prominent.
What an obtrusive storm Gustav became! We were without power early Wednesday until late Friday (36 hours). Son and friend brought us over a generator late Wed afternoon. I told them all I was worried about was "America's Got Talent". Ha... They hooked up the freezer, the refrigerator and yep... the TV... My baby boy does anything for mama...
Through all this, ChemoSabe worked half days and then to clinic. We saw the doctor on Thursday afternoon and he is discharged for a month only. We have about four weeks and then the chemo and second stem cell will begin. We started the bridging medications yesterday. Chemo by mouth, steroids and bacterial prevention. The dose of blood thinner (Lovenox) was increased from 80 to 150 a day. I had pharmacy chores on Friday while he went out of town on business. I made the Outpatient pharmacy, the Infusion Center pharmacy and then our hometown pharmacy.
We were instructed to purchase a blood pressure machine because ChemoSabe will only be doing labs once a week. His blood pressure has always run low for years, but they are not convinced of that. So, I got one and we are doing both our pressure each evening. I learned something about myself with it already. I have a history of migraines, but I only have them now about every six months. I started getting one on Wednesday. It kept trying to creep up until Friday. When we took our pressures on Friday evening mine was sky high. Hmmmm... I wonder why? ha
We were lucky with the storm besides losing power. We had a lot of limbs down and I got them all taken care of in the front yard. I worked all day yesterday with the new rider mower. What an awesome machine. I haven't even started on the back yard. It will be a week long job.
ChemoSabe's counts are well. His CRP was at 35 on Thursday, but they scheduled his port to be removed anyway. We got outta there around 5:30 p.m. I didn't give him any Lovenox on Tuesday and Wednesday because of the possibility of having the port pulled. By Thursday evening his legs were giving him fits. We got up around 3:30 Friday a.m. and I gave him a Lovenox, but on Friday night they were hurting again. Yesterday morning he was still in discomfort. Hurting in the calves was very obtrusive. I made his breakfast. I convinced him he needed to walk around much of the day to keep up the circulation instead of sitting in the recliner. The pain is at night when he is relaxing. Well, he got out in the yard and piddled while I was on the mower. He shoveled a little dirt...and I mean little. About four shovel fulls. He pulled up some weeds and picked up a few limbs. He huffed and puffed a bit. I had helped him put his bike up on the rake and he came up to the garage. He polished and waxed on it. By the end of the day he was feeling a lot better. He got a full night's sleep without having to go downstairs to the recliner.
He slept so good we were able to go to church this morning. And, what a sermon it was. KJ, my boss, is the preacher and he was on a roll today. Afterward we met them for lunch and had an enjoyable rest of the day.
Heard from Roger today and he had his stem cell on Friday. He has been having the hiccups (sound familiar?) and stomach problems, but seems to be doing okay. There are three others that are in our time frame that are having high CRPs. It looks like everyone is right on schedule. Just doesn't seem right that you have to be very, very ill to be normal at this stage. That's protocol.
The steroids are working on ChemoSabe already. He will be a job keeping down this week. He is traveling to Shreveport tomorrow. He has already rescheduled his lab for this week so he can do some work. His appetite has increased and he seems to be enjoying food more the last couple of days. He is having some problem with acid reflux, but I believe that is because of the steroid.
Well, kids... I am going to hit the rack early. I just bathed Parker and Kipper and now I need to take care of Maxie and Pete.
Keep those prayers coming. Especially for our friends still going through the first phase.
Good night and Love --- Pepper
Tuesday, September 2, 2008
Disparity -- Word for the Day -- Tuesday, September 2, 2008
Disparity
DEFINITION: (noun) difference in quality or kind.
Hope this evening finds all of you well, for the most part and surviving the storm. We have had several large, large branches down and we believe one fell on Kipper. He has a bulge and can hardly lie down. That or he felt off the deck during the storm. I left all four in the sunroom today because of the storm and let them out only for a few minutes when I got home.
I apologize for not writing since last Wednesday. I honestly didn't realize it had been so long, until I got some strong hints from some of you... After our doctor's visit last Thursday our balloon was busted. We really believed CheomSabe would be discharged for a break. His counts have been very good, BUT he still has a low grade infection and they do not know what it is. So, the port did not come out and we are scheduled to go back for a visit this Thursday. Therefore, he is still getting labs each day. He told one of the nurses Saturday he wanted to call in 'sick' on Sunday so she spoke with the APN and they gave him the day off.
God is still amusing us. Had to have my dryer fixed on Friday. Something else to keep our minds occupied. Saturday as I was cleaning the fish tank, I stubbed my toe and think I broke it. It is black and blue and hurts like a (sailor word)...
Saturday, the son and Big E took me over to my boss' house and we picked up the riding lawnmower I told you about. The son still has it after putting a fuel line on it, fixing a tire and buying a new battery. He enjoyed it so much at his house he mowed two of his neighbors yards. He says it is a fine machine. ChemoSabe felt well enough Saturday late to meet the kids for pizza. I must admit I truly enjoyed it and believe I had a bit too much wine. Needed it!
Since we had Sunday off from lab I let ChemoSabe sleep a little late. We had intended to go to church, but he hasn't been resting very well. He has been craving fish and we didn't want to go to our favorite spot in Heber Springs. Too far. So, we decided on North Little Rock. The two places we picked -- one was closed and the other was no longer in business. So we headed for Conway. That place was closed also. We ended up at the Market Place in Conway, of which we really like. We got there before the dinner rush. Conway is about 40 miles from us. After we finished our meal we just lingered and watched the people coming in. An elderly couple seemed anxious to sit down before anyone else. They didn't even wait on the hostess to seat them. They seated themselves at a table next to us. I noticed he had a port so I went over and asked him if he were a MM patient. This little man with a big grin on his face looked up at me and said, "You bet cha bippy, Baby." He has been a patient since August 28, 2001. Their 55th wedding anniversary was August 27. They had been in Infusion all day and had taken a sheet cake into the nurses to celebrate his progress and their anniversary. These two were quite the characters. He commenced to tell me he told the doctor what he wanted done. His doctor is the same as ChemoSabe's. He tells him he will 'do it my way'. Then he asks me if I know who sang that song. I told him Frank Sinatra, of course. At that he told me his name was Frank and the wife was Mary. I know now why we traveled to so many places to find food. God brought us together.
ChemoSabe has yet to get his appetite back. He is eating like a bird. He doesn't even eat a whole piece of pie. He had gained about 15 lb. last week and on Friday they started him on lasix. I hate that stuff. I tried to convince them it was the growth factor shot that made him gain. They claimed it was too much fluid. He took it for three days. He has lost all but three pounds of that. He is very tired.
Back to my last writing where I thought our RN niece was going to have to take him in because of the dry heaves the night before. I had a class on Thursday morning and when I got out I tried to call him at home and on his cell. No answer. I called the niece and she had not heard from him. I started home instead of going to work (30 miles) so I could check on him. I got half way home and he called. Are you ready for this??????? When I asked where he was -- AT WORK! I was so upset with thinking something was wrong, I just hung up... Relieved, angry, afraid, stressed, p.o. You name it... all those feelings in one second.
He seems to feel better that last couple of days, but the tiredness is still heavy. He did go to work this morning after labs. I am still giving him his blood thinner shots daily and his meds are the same. Again, his counts look very good except for the crap (CRP). It is hanging steady at 50.
I am going now. Not writing for a couple of days ties us all up. I write too much then and take up too much of your time. I haven't even used the Word for the Day in this writing -- Disparity. But, now at least you know what it means. Might be something I test you on later.
So, the holiday weekend came and went. Can't really plan much with the daily visits. Even Sunday was not enough for us to recoup and regain our strength. ChemoSabe went to lab again yesterday and I went to work. I don't get paid holidays. Gotta have that money, honey.
Good night and Love -- Pepper
DEFINITION: (noun) difference in quality or kind.
Hope this evening finds all of you well, for the most part and surviving the storm. We have had several large, large branches down and we believe one fell on Kipper. He has a bulge and can hardly lie down. That or he felt off the deck during the storm. I left all four in the sunroom today because of the storm and let them out only for a few minutes when I got home.
I apologize for not writing since last Wednesday. I honestly didn't realize it had been so long, until I got some strong hints from some of you... After our doctor's visit last Thursday our balloon was busted. We really believed CheomSabe would be discharged for a break. His counts have been very good, BUT he still has a low grade infection and they do not know what it is. So, the port did not come out and we are scheduled to go back for a visit this Thursday. Therefore, he is still getting labs each day. He told one of the nurses Saturday he wanted to call in 'sick' on Sunday so she spoke with the APN and they gave him the day off.
God is still amusing us. Had to have my dryer fixed on Friday. Something else to keep our minds occupied. Saturday as I was cleaning the fish tank, I stubbed my toe and think I broke it. It is black and blue and hurts like a (sailor word)...
Saturday, the son and Big E took me over to my boss' house and we picked up the riding lawnmower I told you about. The son still has it after putting a fuel line on it, fixing a tire and buying a new battery. He enjoyed it so much at his house he mowed two of his neighbors yards. He says it is a fine machine. ChemoSabe felt well enough Saturday late to meet the kids for pizza. I must admit I truly enjoyed it and believe I had a bit too much wine. Needed it!
Since we had Sunday off from lab I let ChemoSabe sleep a little late. We had intended to go to church, but he hasn't been resting very well. He has been craving fish and we didn't want to go to our favorite spot in Heber Springs. Too far. So, we decided on North Little Rock. The two places we picked -- one was closed and the other was no longer in business. So we headed for Conway. That place was closed also. We ended up at the Market Place in Conway, of which we really like. We got there before the dinner rush. Conway is about 40 miles from us. After we finished our meal we just lingered and watched the people coming in. An elderly couple seemed anxious to sit down before anyone else. They didn't even wait on the hostess to seat them. They seated themselves at a table next to us. I noticed he had a port so I went over and asked him if he were a MM patient. This little man with a big grin on his face looked up at me and said, "You bet cha bippy, Baby." He has been a patient since August 28, 2001. Their 55th wedding anniversary was August 27. They had been in Infusion all day and had taken a sheet cake into the nurses to celebrate his progress and their anniversary. These two were quite the characters. He commenced to tell me he told the doctor what he wanted done. His doctor is the same as ChemoSabe's. He tells him he will 'do it my way'. Then he asks me if I know who sang that song. I told him Frank Sinatra, of course. At that he told me his name was Frank and the wife was Mary. I know now why we traveled to so many places to find food. God brought us together.
ChemoSabe has yet to get his appetite back. He is eating like a bird. He doesn't even eat a whole piece of pie. He had gained about 15 lb. last week and on Friday they started him on lasix. I hate that stuff. I tried to convince them it was the growth factor shot that made him gain. They claimed it was too much fluid. He took it for three days. He has lost all but three pounds of that. He is very tired.
Back to my last writing where I thought our RN niece was going to have to take him in because of the dry heaves the night before. I had a class on Thursday morning and when I got out I tried to call him at home and on his cell. No answer. I called the niece and she had not heard from him. I started home instead of going to work (30 miles) so I could check on him. I got half way home and he called. Are you ready for this??????? When I asked where he was -- AT WORK! I was so upset with thinking something was wrong, I just hung up... Relieved, angry, afraid, stressed, p.o. You name it... all those feelings in one second.
He seems to feel better that last couple of days, but the tiredness is still heavy. He did go to work this morning after labs. I am still giving him his blood thinner shots daily and his meds are the same. Again, his counts look very good except for the crap (CRP). It is hanging steady at 50.
I am going now. Not writing for a couple of days ties us all up. I write too much then and take up too much of your time. I haven't even used the Word for the Day in this writing -- Disparity. But, now at least you know what it means. Might be something I test you on later.
So, the holiday weekend came and went. Can't really plan much with the daily visits. Even Sunday was not enough for us to recoup and regain our strength. ChemoSabe went to lab again yesterday and I went to work. I don't get paid holidays. Gotta have that money, honey.
Good night and Love -- Pepper
Wednesday, August 27, 2008
Dry Heaves -- Word for the Day -- Wednesday, August 27, 2008
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
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
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
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