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!
Chemo Sabe
- ChemoSabe
- Benton, AR, United States
- Diagnosed with Multiple Myeloma-- May 2008
Wednesday, October 29, 2008
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
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