Obtrusive
DEFINITION: (adjective) overly prominent.
Okay, Okay... I know... You haven't heard from us in a while. Work for both of us has been obtrusive the last few weeks. I do have some good news for you.
Last Tuesday, 01/27, the port was pulled and we had a doctor's appt. Everything looks great. ChemoSabe did not go neutrapenic once. A surprise for us and the doctors. Our next round of chemo is in six weeks. We go through the same process.
Labs for now will be twice a week for two weeks, once a week for two weeks, then once every two weeks. That will bring us up to the six week deadline. Meds were cut down to four a day. No more Thalidomide (formaldehyde) or steroids.
A MRI is being scheduled and also a bone biopsy. The doctor wants to make certain there is nothing going on with the lesions. She is happy they are not growing, BUT, she is concerned that they are not decreasing in size or disappearing.
ChemoSabe has not missed a lick. He did have a blistered face from what we thought was the Velcade shots (chemo), but we were advised by the transplant nurse it was from the antibiotic drip he had. That makes two antibiotics we know of now that he is highly allergic to. Also, it can cause a condition called "Red Man". Blisters the whole body because it is usually infused too quickly.
So, we are happy with this report. It was worth it.
Mom is doing better, too. She is like talking to a four year old, but I can understand what she wants and/or needs 90% of the time. We are getting along better and she seems to be settling in. I let her call me now on my cell and she goes to the desk and can remember my number most of the time. I believe that gives her more freedom. I took her out on Friday (my day off) and away we went to Wal-Mart. We got her two pairs of casual shoes, lipstick and a compact. She was delighted, but informed me she needed to get a job so she could repay me... I almost cried. The next day she didn't remember one pair of the shoes.
Wednesday is her 80th birthday and I am planning a little cake and ice cream eating at the house. I am hoping we have a good turn out, because I feel it will show her she still has people in her life besides me. Although I have tried to limit my visits to every day or every other day instead of the two to three times a day, she is still dependent on me.
I have a parent/teacher meeting, per se, with the nursing home today for a three month evaluation. Doesn't seem possible.
You will remember I do believe God has a sense of humor. Well, I certainly feel he had a plan for my mother's condition. He knew she would not go anywhere else to live or to a nursing home if anything should ever happen. He is in control and he knew this deal with my sister-in-law would take a massive toll on my brother and he would not be able to spend special time with mom. Remember, he is wheelchair confined. Sooooooo, here came mom's stroke. Then here came my sister-in-law's illness a few days later. My mother has exceptional care and my brother is able to take care of his wife without the major responsibility of my mom.
God is good.
We rode with Rainman and Stretch on Saturday. We were only gone for about five hours. Up through the Ozark Mountains we went. It was a beautiful day. We were already talking about our next trip before we even got off the bikes.
One of the volunteers here for me left me a note a few weeks back that she put a treat in the frig for me. I rushed back expecting pie or cake. It was a six pack of Slim Fast. (WHAT THA?) She could not use it anymore, per her doctor. I tried it and I have been using it religiously. One for breakfast, one for lunch and then a good dinner. Now instead of waking up early and THINKING about putting on sweats and tennis shoes to go out into the hood, I am exercising every morning on the ab lounger I have had in the bed room for a year. I believe I am gonna be ready for those tight jeans and tank tops before our summer rides!
I can't tell you how thankful I am that ChemoSabe has done so well. I can't believe a year is almost gone and we have been through so much. AND, you have been right there with us. Haven't YOU learned so much? (test time... be looking for it)
His skin is so thin, but soft and perfect. We sat down to eat last night and blood started pouring out of the top of his hand. He had a gash. We have no idea how it happened or what happened. We rushed to the bathroom and soaked it with peroxide and put a band aid on it. We have four boxes handy. Different colors for whatever he wears! HA
Oh... we were watching television Sunday, 01/25, and he was bragging about not shaving for the last three to four days... I asked him if he had pulled his hair lately.. He had gotten a haircut on Saturday.. Well, he pulled a cotton ball size and it all came out... Tuesday we went bald again and laughed.. I did a mohawk first. It was certainly not as obtrusive as the first time. HA
Good afternoon and Love, Pepper.
Chemo Sabe
- ChemoSabe
- Benton, AR, United States
- Diagnosed with Multiple Myeloma-- May 2008
Wednesday, January 28, 2009
Wednesday, January 21, 2009
Auspicious -- Word for the Day -- Wednesday, January 21, 2009
Auspicious
DEFINITION: (adjective) promising good fortune; propitious.
We are into 21 days of the New Year and it has been auspicious, to say the least! Labs have revealed the last few days that ChemoSabe is 'Upside down, all around me; inside/out -- round and round'... His WBC was way up over the weekend, when he was to be neutrapenic. He hasn't been, yet. They came down a bit on Sunday, then up on Monday, down one point on Tuesday and back up today. The Infusion nurse felt it was the growth factor shot keeping him up so he didn't get one today... Makes sense, doesn't it?
Platelets are falling two points a day. Down to 37 today. So the Lovenox (blood thinner) was stopped yesterday. Thank the Lord! I don't think he has a spot on his lower legs that remain unbruised. Since he has been on the B-6 every day and had one shot of B-12, his numbness has decreased and his legs are not swelling at ALL... We ran into a patient a few weeks back that advised him to wear ankle socks and put them on the top bone of the ankle and it would reduce swelling.... IT WORKS, too.
His face is still blistered.... I have decided to give him one of my itch pills (hydroxzine) tonight. I can guarantee it will be cleared up tomorrow.
With all this -- we had our doctor's followup visit today. She is amazed at how well ChemoSabe is doing. She was auspicious about his treatment this time. She says she has NEVER heard of any other patient working during any of the treatments and she can't believe he has been travelling to boot. He even told her of plans to go out of state tomorrow.
She agreed that the hydroxzine was a very good idea, since the benedrel has not made any difference for improvement. We are to see her again next week to schedule the port to be removed. That means daily labs will stop and he will probably only go once a week. Then the treatment begins again in six weeks.
The BEST NEWS of ALL!!!!! Are you READY FOR THIS!!!!! She tells us she firmly believes he will NOT go neutrapenic this time. She doesn't remember anyone not EVER going neutrapenic. She says his bone marrow is SO HEALTHY and that is the reason his counts remain stable or high.
Now, this is not to say that he may not crash tomorrow or Friday, but she feels certain he will not. If he does not drop, then the port will come out Tuesday...
Even though he has felt bad this week with the blister and being tired from the chemo and lab visits, I have to tell you, this has really ENERGIZED me. I have felt wonderful all week. I even rearranged my desk at work. When I get in the rearranging mood -- look out Katie!!!
I have wanted to do the garage for months since my mom's stuff is still in there. When we drive by garages with the doors up and we see storage space instead of vehicle space, we just roll our eyes. Well, that is almost the way ours is now. I rearrange it about once a year. I am glad I am off Friday and the weather is suppose to be half way decent. Never had a garage sale, but when I start pulling things out the neighbors might very well think I am.
Mom went to the beauty shop yesterday and got a cut and style... She was in a better mood. Thank the Lord for that one, too.
Oh gosh... I am just so hyper from the good news.
Good day and Love -- Pepper
DEFINITION: (adjective) promising good fortune; propitious.
We are into 21 days of the New Year and it has been auspicious, to say the least! Labs have revealed the last few days that ChemoSabe is 'Upside down, all around me; inside/out -- round and round'... His WBC was way up over the weekend, when he was to be neutrapenic. He hasn't been, yet. They came down a bit on Sunday, then up on Monday, down one point on Tuesday and back up today. The Infusion nurse felt it was the growth factor shot keeping him up so he didn't get one today... Makes sense, doesn't it?
Platelets are falling two points a day. Down to 37 today. So the Lovenox (blood thinner) was stopped yesterday. Thank the Lord! I don't think he has a spot on his lower legs that remain unbruised. Since he has been on the B-6 every day and had one shot of B-12, his numbness has decreased and his legs are not swelling at ALL... We ran into a patient a few weeks back that advised him to wear ankle socks and put them on the top bone of the ankle and it would reduce swelling.... IT WORKS, too.
His face is still blistered.... I have decided to give him one of my itch pills (hydroxzine) tonight. I can guarantee it will be cleared up tomorrow.
With all this -- we had our doctor's followup visit today. She is amazed at how well ChemoSabe is doing. She was auspicious about his treatment this time. She says she has NEVER heard of any other patient working during any of the treatments and she can't believe he has been travelling to boot. He even told her of plans to go out of state tomorrow.
She agreed that the hydroxzine was a very good idea, since the benedrel has not made any difference for improvement. We are to see her again next week to schedule the port to be removed. That means daily labs will stop and he will probably only go once a week. Then the treatment begins again in six weeks.
The BEST NEWS of ALL!!!!! Are you READY FOR THIS!!!!! She tells us she firmly believes he will NOT go neutrapenic this time. She doesn't remember anyone not EVER going neutrapenic. She says his bone marrow is SO HEALTHY and that is the reason his counts remain stable or high.
Now, this is not to say that he may not crash tomorrow or Friday, but she feels certain he will not. If he does not drop, then the port will come out Tuesday...
Even though he has felt bad this week with the blister and being tired from the chemo and lab visits, I have to tell you, this has really ENERGIZED me. I have felt wonderful all week. I even rearranged my desk at work. When I get in the rearranging mood -- look out Katie!!!
I have wanted to do the garage for months since my mom's stuff is still in there. When we drive by garages with the doors up and we see storage space instead of vehicle space, we just roll our eyes. Well, that is almost the way ours is now. I rearrange it about once a year. I am glad I am off Friday and the weather is suppose to be half way decent. Never had a garage sale, but when I start pulling things out the neighbors might very well think I am.
Mom went to the beauty shop yesterday and got a cut and style... She was in a better mood. Thank the Lord for that one, too.
Oh gosh... I am just so hyper from the good news.
Good day and Love -- Pepper
Monday, January 19, 2009
RUTHIE -- Word for the Day -- Monday, January 19, 2009
RUTHIE -- As in Winner of the Top Three Questions from yesterday's blog. Here are the answers:
"Hey there Pepper and ChemoSabe….the answer is “When the WBC goes below 2; the MM guys and dolls are considered nutropenic…..they wear those lovely masks and you are locked in the RV; your house, or apt with the patient not being able to stand the sight, smell, or thought of food and don’t care if they have on underwear or not! The “care partner” then eats canned soup, chili, peanut butter and crackers and drinks whiskey and tries to stay sober just in case you have to make a quick run to the hospital!! Now, where is that picture!
Take care of Chemo-Sabe….hey ear plugs come in really handy too during those knock out days when the intense snoring sets in. Also, as always, remember to take care of yourself and remember “laughter is an instant vacation.”
====================================================================
Yes -- I emailed her the photo.
Counts are still coming down. It was an IN day today for him. Running out of gas. Appetite and mood is shifting. Grumpy has begun to visit again. Not to mention, Mr. Negative. So, I fixed a good supper, ate, washed dishes and went to see mom. Got back home and getting ready for the rack.
Stomach shots the Infusion is giving him makes his gut look like black golf balls. Guess I need to go up there and teach them a few things about his shot giving. His legs have bruises and looks like massive vercos veins. That is a result of the blood thinner. We are hoping his poor little legs (use to be shapely and muscular) will get back to normal after this week. He should have his last blood thinner tomorrow as his platelets will be way below the 50 mark.
We have a follow up doctor's visit on Wednesday. I believe it will just be to see if he has been sick, nauseated or had any more problems with his legs hurting because of blood clots. He doesn't have those anymore. He is totally off the Thalidomide. He calls it Formaldehyde. I guess it is a good comparison for the MM patients.
Please don't get me wrong when I share about his mood swings. We get through it and we laugh about it. We do not argue about it, because they are expected. As I sit here now I have a grin on my face because you really would have to go through it to appreciate it. Right, Ruthie? (as I scratch and shake my head). ChemoSabe adn I call them his "chemo moments". When he got off his chemo bag last week the Infusion Center gave him a button --- "No Mo Chemo"!
Well, Kids... It is 9:00 p.m. I am going to call it a night.
Good night and Love -- Pepper ---- Sorry the rest of you missed the deadline and answers... Better luck next time. You will teach you to study! ha
"Hey there Pepper and ChemoSabe….the answer is “When the WBC goes below 2; the MM guys and dolls are considered nutropenic…..they wear those lovely masks and you are locked in the RV; your house, or apt with the patient not being able to stand the sight, smell, or thought of food and don’t care if they have on underwear or not! The “care partner” then eats canned soup, chili, peanut butter and crackers and drinks whiskey and tries to stay sober just in case you have to make a quick run to the hospital!! Now, where is that picture!
Take care of Chemo-Sabe….hey ear plugs come in really handy too during those knock out days when the intense snoring sets in. Also, as always, remember to take care of yourself and remember “laughter is an instant vacation.”
====================================================================
Yes -- I emailed her the photo.
Counts are still coming down. It was an IN day today for him. Running out of gas. Appetite and mood is shifting. Grumpy has begun to visit again. Not to mention, Mr. Negative. So, I fixed a good supper, ate, washed dishes and went to see mom. Got back home and getting ready for the rack.
Stomach shots the Infusion is giving him makes his gut look like black golf balls. Guess I need to go up there and teach them a few things about his shot giving. His legs have bruises and looks like massive vercos veins. That is a result of the blood thinner. We are hoping his poor little legs (use to be shapely and muscular) will get back to normal after this week. He should have his last blood thinner tomorrow as his platelets will be way below the 50 mark.
We have a follow up doctor's visit on Wednesday. I believe it will just be to see if he has been sick, nauseated or had any more problems with his legs hurting because of blood clots. He doesn't have those anymore. He is totally off the Thalidomide. He calls it Formaldehyde. I guess it is a good comparison for the MM patients.
Please don't get me wrong when I share about his mood swings. We get through it and we laugh about it. We do not argue about it, because they are expected. As I sit here now I have a grin on my face because you really would have to go through it to appreciate it. Right, Ruthie? (as I scratch and shake my head). ChemoSabe adn I call them his "chemo moments". When he got off his chemo bag last week the Infusion Center gave him a button --- "No Mo Chemo"!
Well, Kids... It is 9:00 p.m. I am going to call it a night.
Good night and Love -- Pepper ---- Sorry the rest of you missed the deadline and answers... Better luck next time. You will teach you to study! ha
Sunday, January 18, 2009
Invariable -- Word for the Day -- Sunday, January 18, 2009
Invariable
DEFINITION: (adjective) not changing or subject to change.
The last week went by like last year -- FAST! ChemoSabe hit the Infusion Center every morning around 6:30 - 7:00. This helps him to get in/out pretty quickly, if you call 11:30 quick. He had to have an antibiotic drip on Tuesday. His blood culture came back bad. When he came home with a phosphorus bag last Sunday and I changed it out I asked him where the cap was... There was none so we thought maybe we were hallucinatin! ha. Well, I clamped the tube after flushing it with saline and Heparin and he discovers that maybe the iv got a bacterial infection because the nurse didn't give him a cap. I got a sick green feeling in my stomach. His CRP (crap) didn't go up until Thursday, though. So that made me feel better.
He has started the Velcade injections. Those are the mamma jamma shots, if you remember. We will be starting classes again this week on his levels. We -- meaning you!!!! Have you studied?
Here are his counts for this last week:
01/14 -- Wed. WBC -- 4.24 Platelets -- 110 CRP -- <5
01/15 -- Thurs WBC -- 14.97 Platelets -- 91 CRP -- 23.2
01/16 -- Fri. WBC -- 20.67 Platelets -- 81 CRP -- 26.3
01/17 -- Sat. WBC -- 11.83 Platelets -- 60 CRP -- 16.4
01/18 -- Sun. WBC -- 8.99 Platelets -- 52 CRP -- 10.3
So, you see, we are coming down slowly, but surely. He will probably be neutrapenic by Tuesday. AND,
1. what is neutrapenic?
2. What happens when the Platelets get below 50?
3. What level does the WBC have to be to indicate one is neutrapenic?
Send me an email at lazydaz@sbcglobal.net with the answer and I will post the winner. What is your prize? A photo of ChemoSabe with a girl in a black bikini on Saturday night... AND IT AIN'T ME, BABE! (Sonny and Cher song, if you remember). Winner is "FIRST WITH THE RIGHT ANSWER"
He worked all last week and even drove to Greenville, Mississippi on Thursday. We had a followup doctor's appt. for 4:00, but they are usually late so he went for his labs at 4:00. I arrived in the clinic at 4:15 after high tailing it from work and signed him in on the doctor's sheet and had a seat. I waited and got a call from him in Infusion and the doctor's office had called and cancelled the appt. at 4:15. Oh well, I needed to go to the bank and see my mom anyway. We were just in time for the 5:00 traffic. (Hey, it's 5:00 somewhere!)
My 'older' brother came in over the weekend and that gave us a break from the nursing home for a couple of days. Even though it is only about six miles from the house, with ChemoSabe crashing in the recliner when he gets home, the added trip is starting to weigh on me. We did, though, take my brother to some kick boxing fights on Saturday night. The son has been begging us to go for some time. We thought we would get out one more time before ChemoSabe's levels went down. That's where the photo of the babe came in. (Ring girl) Son set that one up, too. I wonder if I were ill if they would call in the Chippindales! Whew!
The Velcade injections have caused a rash on ChemoSabe's face. The chemo injection causes the skin to blister like a sun burn. They gave him Benedrel for today and tomorrow. It knocked him out all afternoon. That means his next dose is at 8:00 p.m. and I will be sleeping in the spare room. Anything that knocks him out, kicks in massive snoring. I set up our upstairs office/bedroom and put one of those egg shell pads ont he day bed and it is pretty darn comfy. Got my own alarm clock and tv, too. He slept in there once and that was last week and even though he is almost too long for the bed, he admitted, too that it was a comfortable bed.
Well, as you can tell, I am starting to ramble. It is 8:00 and he is already in bed. We had a good supper of cold meat loaf sandwiches, so I will be watching Desperate Housewives and calling it a night myself.
I will keep you posted on his levels this week and on the winner, also.
Before I forget -- Keith and Diane from Alabama got a good report and headed back home on Friday with Consolidation treatment. Billy and Sherry went home on Thursday back to Alabama and got a good report and will be Bridging. I forgot to tell you in my last blog that Roger and Ruthie had been here during the Christmas holidays and he finished up his second Stem Cell transplant. He says it was pretty rough in that it made him very weak. I believe he lost about eight days. They will be back in March.
Keep them in your prayers and us, too. You have been so faithful.
Good night and Love --- Pepper
DEFINITION: (adjective) not changing or subject to change.
The last week went by like last year -- FAST! ChemoSabe hit the Infusion Center every morning around 6:30 - 7:00. This helps him to get in/out pretty quickly, if you call 11:30 quick. He had to have an antibiotic drip on Tuesday. His blood culture came back bad. When he came home with a phosphorus bag last Sunday and I changed it out I asked him where the cap was... There was none so we thought maybe we were hallucinatin! ha. Well, I clamped the tube after flushing it with saline and Heparin and he discovers that maybe the iv got a bacterial infection because the nurse didn't give him a cap. I got a sick green feeling in my stomach. His CRP (crap) didn't go up until Thursday, though. So that made me feel better.
He has started the Velcade injections. Those are the mamma jamma shots, if you remember. We will be starting classes again this week on his levels. We -- meaning you!!!! Have you studied?
Here are his counts for this last week:
01/14 -- Wed. WBC -- 4.24 Platelets -- 110 CRP -- <5
01/15 -- Thurs WBC -- 14.97 Platelets -- 91 CRP -- 23.2
01/16 -- Fri. WBC -- 20.67 Platelets -- 81 CRP -- 26.3
01/17 -- Sat. WBC -- 11.83 Platelets -- 60 CRP -- 16.4
01/18 -- Sun. WBC -- 8.99 Platelets -- 52 CRP -- 10.3
So, you see, we are coming down slowly, but surely. He will probably be neutrapenic by Tuesday. AND,
1. what is neutrapenic?
2. What happens when the Platelets get below 50?
3. What level does the WBC have to be to indicate one is neutrapenic?
Send me an email at lazydaz@sbcglobal.net with the answer and I will post the winner. What is your prize? A photo of ChemoSabe with a girl in a black bikini on Saturday night... AND IT AIN'T ME, BABE! (Sonny and Cher song, if you remember). Winner is "FIRST WITH THE RIGHT ANSWER"
He worked all last week and even drove to Greenville, Mississippi on Thursday. We had a followup doctor's appt. for 4:00, but they are usually late so he went for his labs at 4:00. I arrived in the clinic at 4:15 after high tailing it from work and signed him in on the doctor's sheet and had a seat. I waited and got a call from him in Infusion and the doctor's office had called and cancelled the appt. at 4:15. Oh well, I needed to go to the bank and see my mom anyway. We were just in time for the 5:00 traffic. (Hey, it's 5:00 somewhere!)
My 'older' brother came in over the weekend and that gave us a break from the nursing home for a couple of days. Even though it is only about six miles from the house, with ChemoSabe crashing in the recliner when he gets home, the added trip is starting to weigh on me. We did, though, take my brother to some kick boxing fights on Saturday night. The son has been begging us to go for some time. We thought we would get out one more time before ChemoSabe's levels went down. That's where the photo of the babe came in. (Ring girl) Son set that one up, too. I wonder if I were ill if they would call in the Chippindales! Whew!
The Velcade injections have caused a rash on ChemoSabe's face. The chemo injection causes the skin to blister like a sun burn. They gave him Benedrel for today and tomorrow. It knocked him out all afternoon. That means his next dose is at 8:00 p.m. and I will be sleeping in the spare room. Anything that knocks him out, kicks in massive snoring. I set up our upstairs office/bedroom and put one of those egg shell pads ont he day bed and it is pretty darn comfy. Got my own alarm clock and tv, too. He slept in there once and that was last week and even though he is almost too long for the bed, he admitted, too that it was a comfortable bed.
Well, as you can tell, I am starting to ramble. It is 8:00 and he is already in bed. We had a good supper of cold meat loaf sandwiches, so I will be watching Desperate Housewives and calling it a night myself.
I will keep you posted on his levels this week and on the winner, also.
Before I forget -- Keith and Diane from Alabama got a good report and headed back home on Friday with Consolidation treatment. Billy and Sherry went home on Thursday back to Alabama and got a good report and will be Bridging. I forgot to tell you in my last blog that Roger and Ruthie had been here during the Christmas holidays and he finished up his second Stem Cell transplant. He says it was pretty rough in that it made him very weak. I believe he lost about eight days. They will be back in March.
Keep them in your prayers and us, too. You have been so faithful.
Good night and Love --- Pepper
Monday, January 12, 2009
Opulent -- Word for the Day -- Monday, January 12, 2009
opulent
DEFINITION: (adjective) possessing or exhibiting great wealth.
Just a catch up to fill you in on our happenings. Friends, family, work, patients.
1. Our friends from Alabama, Billy and Sherry, are back in Arkansas. He had his bone marrow biopsy yesterday. You will remember, he is the one that had a stroke in Memphis while traveling back home after his stem cell transplant. He has a doctor's appointment on Wednesday.
2. Our friends from Alabama, Keith and Diane arrived in Little Rock on Saturday. He had his bone marrow biopsy today and has a doctor's appointment on Wednesday. He is the very 'first' MM patient we met. He stays in the Hospitality House rented by ChemoSabe's and my mentor from back in 1997. The house is owned by the church I work for.
3. A patient that also stayed in the house, Mike and Linda from Michigan. He passed away yesterday. Linda also lost her dad a week ago.
4. A patient that stay in the house, too, Steve from Indiana, passed away last month.
These are all MM patients, but we have heard from wonderful stories from them through their trials.
ChemoSabe gets his bag off tomorrow. What a weight that will be lifted from him. His platelets are beginning to drop slowly. They have come down about 10 in the last two days. His blood pressure is going up. His weight is a different story. He has gained about 15 lb in the last two weeks. When he discussed this with the doctor last week she told him it was actually a good thing because if he were losing weight it would mean the MM was eating away his nutrients. The Dexamethazone makes him gain, too.
The Dex also makes him crabby, irritable, moody, hot flashy, angry, antsy, bitchy, nagging and just plain hard to live with. This time seems the worst. He should realize what it is doing to him and stop it before it happens, but it just happens. So, I have been biting my tongue. Well, what tongue I have left! ha We discussed it this evening and he tells me it just comes out. Hey... now he knows how it feels to go through menopause.
That reminds me of a story... When we first got married (22 years ago) we had an argument. Our arguments were horrible then. You know what they say about the first year. Well, during this argument he makes a statement: "Did you forget to take your pill?".... OMG... I jumped up in the middle of the bed and he was standing by the bed and I walloped him. He stood there and told me to do it again. I didn't want to... To this day, I have never hit him again and he SURELY has never asked me if I have taken my pill.. No sirreee. If I asked him that right now, I would probably get walloped, too.. (Snork)
Some of the patients have been telling him about a new drug (Lycria) that will reduce or eliminate the numbness in his feet from the side effects of the Thalidomide. His doctor told him last week he would be getting B-6 and B-12 shots after the chemo. Those should help with the numbness. I had to remind him of that, but he spoke with his APN about it today anyway. She agreed about the B-12 and B-6.
All-in-all he has been doing very well. He has been getting tired in the afternoons after getting home from work and he has been hitting the recliner. He has hit the bed early tonight already after leaving the recliner and eating dinner.
His Phosporus was low yesterday and they sent him home with a five hour drip. I had to flush out his lines and recap. That scares me. I think about those iv lines going down through his juggler and I have to talk to myself to make certain I don't leave one open. I can see germs going down inside the plastic.
Although we are already tired of the process (protocol)our lives are opulent, thanks to our Almighty God. He keeps us strong and sees us through.
My mom has been simple minded the last few days. I find myself talking to her and listening to her as if she is about four years old. I have to repeat myself and when she repeats herself she thinks she is saying the correct thing, but what comes out of her lips makes no sense. We do laugh and we have some good conversations. She seems to know exactly what is going on with ChemoSabe. He showed her his bag and iv lines this weekend. She called one of the CNAs in and showed her the same. She tried to explain and he finally told them what was going on. She loves to rub his hair. She really loved it when he was bald. They communicate very well. She loves to talk to him about the officers. She use to work with him many years ago.
She continuously asks if he is out of town and she suggests she needs to drive him when he travels since he might not be feeling well. He has tried to convince her he is okay, but she just shakes her head and tells him to call her the next time because she needs a part time job. Then she laughs.
Good night and Love Pepper
DEFINITION: (adjective) possessing or exhibiting great wealth.
Just a catch up to fill you in on our happenings. Friends, family, work, patients.
1. Our friends from Alabama, Billy and Sherry, are back in Arkansas. He had his bone marrow biopsy yesterday. You will remember, he is the one that had a stroke in Memphis while traveling back home after his stem cell transplant. He has a doctor's appointment on Wednesday.
2. Our friends from Alabama, Keith and Diane arrived in Little Rock on Saturday. He had his bone marrow biopsy today and has a doctor's appointment on Wednesday. He is the very 'first' MM patient we met. He stays in the Hospitality House rented by ChemoSabe's and my mentor from back in 1997. The house is owned by the church I work for.
3. A patient that also stayed in the house, Mike and Linda from Michigan. He passed away yesterday. Linda also lost her dad a week ago.
4. A patient that stay in the house, too, Steve from Indiana, passed away last month.
These are all MM patients, but we have heard from wonderful stories from them through their trials.
ChemoSabe gets his bag off tomorrow. What a weight that will be lifted from him. His platelets are beginning to drop slowly. They have come down about 10 in the last two days. His blood pressure is going up. His weight is a different story. He has gained about 15 lb in the last two weeks. When he discussed this with the doctor last week she told him it was actually a good thing because if he were losing weight it would mean the MM was eating away his nutrients. The Dexamethazone makes him gain, too.
The Dex also makes him crabby, irritable, moody, hot flashy, angry, antsy, bitchy, nagging and just plain hard to live with. This time seems the worst. He should realize what it is doing to him and stop it before it happens, but it just happens. So, I have been biting my tongue. Well, what tongue I have left! ha We discussed it this evening and he tells me it just comes out. Hey... now he knows how it feels to go through menopause.
That reminds me of a story... When we first got married (22 years ago) we had an argument. Our arguments were horrible then. You know what they say about the first year. Well, during this argument he makes a statement: "Did you forget to take your pill?".... OMG... I jumped up in the middle of the bed and he was standing by the bed and I walloped him. He stood there and told me to do it again. I didn't want to... To this day, I have never hit him again and he SURELY has never asked me if I have taken my pill.. No sirreee. If I asked him that right now, I would probably get walloped, too.. (Snork)
Some of the patients have been telling him about a new drug (Lycria) that will reduce or eliminate the numbness in his feet from the side effects of the Thalidomide. His doctor told him last week he would be getting B-6 and B-12 shots after the chemo. Those should help with the numbness. I had to remind him of that, but he spoke with his APN about it today anyway. She agreed about the B-12 and B-6.
All-in-all he has been doing very well. He has been getting tired in the afternoons after getting home from work and he has been hitting the recliner. He has hit the bed early tonight already after leaving the recliner and eating dinner.
His Phosporus was low yesterday and they sent him home with a five hour drip. I had to flush out his lines and recap. That scares me. I think about those iv lines going down through his juggler and I have to talk to myself to make certain I don't leave one open. I can see germs going down inside the plastic.
Although we are already tired of the process (protocol)our lives are opulent, thanks to our Almighty God. He keeps us strong and sees us through.
My mom has been simple minded the last few days. I find myself talking to her and listening to her as if she is about four years old. I have to repeat myself and when she repeats herself she thinks she is saying the correct thing, but what comes out of her lips makes no sense. We do laugh and we have some good conversations. She seems to know exactly what is going on with ChemoSabe. He showed her his bag and iv lines this weekend. She called one of the CNAs in and showed her the same. She tried to explain and he finally told them what was going on. She loves to rub his hair. She really loved it when he was bald. They communicate very well. She loves to talk to him about the officers. She use to work with him many years ago.
She continuously asks if he is out of town and she suggests she needs to drive him when he travels since he might not be feeling well. He has tried to convince her he is okay, but she just shakes her head and tells him to call her the next time because she needs a part time job. Then she laughs.
Good night and Love Pepper
Friday, January 9, 2009
Velcade -- Word for the Day -- Friday, January 9, 2009
VELCADE® (bortezomib)
Definition: Chemo injection is indicated for the treatment of patients with multiple myeloma.
Here we are -- got the port inserted at 8:00 a.m. today and had the chemo bags hooked up around 11:00 a.m. Four days of chemo - two bags, along with steroids and chemo by mouth. The Velcade shots will be Day 1, 4, 8 and 11. Velcade is a mamma jamma chemo.
His 24-hour chemo bag is changed tomorrow at 11:30, Sunday at 9:30 and Monday at 7:30… then on Tuesday he will be doing labs everyday at 7:00 a.m. Sometimes that will take a few hours depending if he needs a transfusion, platelets, magnesium or potassium. Blood takes two hours to run, platelets – 20 min and the others take five hours. They usually keep the last two hooked up to his port and he brings them home so I have to flush out the iv lines when I disconnect the bag. I have to flush them out with saline and heparin…
We have been informed that this round of chemo is not as harsh and that ChemoSabe will not lose his hair. I have my clippers ready, just in case. The girls in the Infusion Center were happy to see him and we acclimated the newbies. Are they in for a treat.
Before we arrived this morning I gave him an Ativan to take the edge off the port insertion. I haven't done that before, but I knew he wouldn't be driving. It helped tremendously, BUT... while we were in the Infusion Waiting he was very, very relaxed, calm and talking a mile-a-minute. The later was the Dex (steroid) he took this morning. I tried to read the paper and it didn't make any difference. It was like he was talking non-stop to himself. A lady across from him (must have been a chemo baby) looked at him strangely so I put my paper down and listened. Chat, chat, chat, chat, chat.... I was thankful the Atvian wore off by the time we got home at 1:00 p.m. and he went on in to work.. HA
The bag is a reminder of what the next four days entail. When he gets up he forgets his bag and the ivs tug. The nurses have a safety for that. They take a huge piece of tape and double it over the iv tubes. Then they take a big safety pin and pin it into the shirt area to prevent pulling the tubes out of the vein. Simple, but safe.
We are keeping Big E tomorrow night. Poppy called him and told him he would follow up with him in the morning. He explained he would really like for him to spend the night with us because he wouldn't be able to see him or be around him in a couple of weeks because of the treatments. Remember, Big E is five years old. Well, after that conversation Big E asked Poppy when he was going to heaven. Poppy explained to him it would be when God was finished with him. He told him God had plans for him and when those plans were finished then he would go be with God. He felt it would be a very long time and we had plenty of time to spend with him and plenty of nights he could spend the night if he didn't want to this weekend. WHAT A POPPY HE IS!
Well, Kids.... we have a long day tomorrow. ChemoSabe has LeafGard coming out to clean our gutters first thing in the morning. He forgot when he scheduled the appointment yesterday that he would be going to Infusion... Gosh, I think the chemo began before it was hooked up! ha
So, we are off to bed and on to our next journey. I believe this round will be easier. He has appointments with clients and prospectives lined up for the next month, so he has the will to keep going. I know he will keep each meeting he has.
Good night and Love -- Pepper
Definition: Chemo injection is indicated for the treatment of patients with multiple myeloma.
Here we are -- got the port inserted at 8:00 a.m. today and had the chemo bags hooked up around 11:00 a.m. Four days of chemo - two bags, along with steroids and chemo by mouth. The Velcade shots will be Day 1, 4, 8 and 11. Velcade is a mamma jamma chemo.
His 24-hour chemo bag is changed tomorrow at 11:30, Sunday at 9:30 and Monday at 7:30… then on Tuesday he will be doing labs everyday at 7:00 a.m. Sometimes that will take a few hours depending if he needs a transfusion, platelets, magnesium or potassium. Blood takes two hours to run, platelets – 20 min and the others take five hours. They usually keep the last two hooked up to his port and he brings them home so I have to flush out the iv lines when I disconnect the bag. I have to flush them out with saline and heparin…
We have been informed that this round of chemo is not as harsh and that ChemoSabe will not lose his hair. I have my clippers ready, just in case. The girls in the Infusion Center were happy to see him and we acclimated the newbies. Are they in for a treat.
Before we arrived this morning I gave him an Ativan to take the edge off the port insertion. I haven't done that before, but I knew he wouldn't be driving. It helped tremendously, BUT... while we were in the Infusion Waiting he was very, very relaxed, calm and talking a mile-a-minute. The later was the Dex (steroid) he took this morning. I tried to read the paper and it didn't make any difference. It was like he was talking non-stop to himself. A lady across from him (must have been a chemo baby) looked at him strangely so I put my paper down and listened. Chat, chat, chat, chat, chat.... I was thankful the Atvian wore off by the time we got home at 1:00 p.m. and he went on in to work.. HA
The bag is a reminder of what the next four days entail. When he gets up he forgets his bag and the ivs tug. The nurses have a safety for that. They take a huge piece of tape and double it over the iv tubes. Then they take a big safety pin and pin it into the shirt area to prevent pulling the tubes out of the vein. Simple, but safe.
We are keeping Big E tomorrow night. Poppy called him and told him he would follow up with him in the morning. He explained he would really like for him to spend the night with us because he wouldn't be able to see him or be around him in a couple of weeks because of the treatments. Remember, Big E is five years old. Well, after that conversation Big E asked Poppy when he was going to heaven. Poppy explained to him it would be when God was finished with him. He told him God had plans for him and when those plans were finished then he would go be with God. He felt it would be a very long time and we had plenty of time to spend with him and plenty of nights he could spend the night if he didn't want to this weekend. WHAT A POPPY HE IS!
Well, Kids.... we have a long day tomorrow. ChemoSabe has LeafGard coming out to clean our gutters first thing in the morning. He forgot when he scheduled the appointment yesterday that he would be going to Infusion... Gosh, I think the chemo began before it was hooked up! ha
So, we are off to bed and on to our next journey. I believe this round will be easier. He has appointments with clients and prospectives lined up for the next month, so he has the will to keep going. I know he will keep each meeting he has.
Good night and Love -- Pepper
Wednesday, January 7, 2009
Ephemeral -- Word for the Day -- Wednesday, January 7, 2009
Ephemeral
DEFINITION: (adjective) quickly disappearing; transient.
Kick 'em back, Kick 'em back, -- Way back, ChemoSabe.
Doctor day today.. You are just NOT going to believe our report.
Arrived waiting room at 12:45 for 1:00 p.m. appointment. We were still in the waiting room at 3:00. Hoo Hum... Back to the doctor's exam room. Saw the test results on the table. I scrolled right through them. As I was reading I was searching my pockets. ChemoSabe asked what I was looking for --- Kleenex. I read on.
Doctor came into the room and caught me reading. I get up from her chair and she sits immediately and begins speaking. I don't read the reports to ChemoSabe. I am always afraid I will read something out loud I don't understand or that is bad and I want to digest it first before he knows about it.
She begins -- Lesions in spinal area of neck have decreased in size (Ephemeral). Other lesions are unremarkable -- meaning no change. No larger, no smaller. Fractures in the lumbar area have not grown and are quite stable. No abnormal enhancement seen in any area. Right hip which holds the prosthesis and shows no evidence of avascular necrosis. No evidence of focal skull base diploic myelomatous disease is noted.
Surely by reading this, you too can see the report is extremely uplifting and overwhelming. I patted him on the back and told him that was why I needed the tissue. PRAISE!!!
We continued on with our visit with the doctor with her telling us if we just ask God for the things we need, He will provide. She tells us her husband is always telling her to pray to God and thank Him for everything.
A second stem cell will not be necessary. We are going on to the Consolidation Phase. A port will be placed on Friday and the camera bag with two chemos will be hooked up Friday. The steroids begin on Friday with the Thalidomide and the rest of his meds. Labs will be every day at the Infusion Center where he will be monitored extensively. His port will be flushed each day and he will be given a blood transfusion, platelets, magnesium or potassium, when and if needed. Back to the old grind stone. This will happen for about two weeks.
Platelets right now are 173 and he will probably go down below 50 in the next two weeks. WBC is now at 5.92 and will fall to 0.2 at some stage, as he did in the past. We are ready. We are thankful. We are prepared. We know what to expect.
This treatment will be back to back - six to eight weeks apart. Then he will have regular check up every three to four months up to a year. After that it will be yearly visits.
Full day of work tomorrow in getting everything lined out. Work, work, work. I watched the special on Patrick Swayze this evening and he just finished a television with working 12 hour days while taking chemo. He is in his tenth month of pancreatic cancer. Life span is usually six months. With watching this, he believes work kept him going. I believe that, too. I see the patients from out of state compared to the ones that are still able to work and I see more progress in the workers.
We went in separate vehicles today since we both came from work. As I entered our neighborhood my cell phone rang. ChemoSabe suggested I let the kids out ant go back and meet him to see my mom. I did. He brought her chocolates. She was in a simple minded mood today and didn't make much sense. Clock to her was a phone, rubber gloves meant kleenex and Johnnie was Jim. I was her mother at one point and grandma has been gone since 2001. As I watched how she relates to ChemoSabe and I watched him, I was reminded of why I first fell in love with this man. I had a sudden urge to go over and sit on his lap and just lie all over him as if he were a pillow. Of course, my mother would have come unglued. Even though we have been married for 21 years she thinks it very unappropriate for people to do those things. ha...
Gosh, I feel like a load has been lifted. Our transplant RN is thrilled, the doctor is happy and the Infusion Center nurses are in for another treat. He will be taking three extra drugs, but that is a drop in the bucket.
Thank you for your prayers... They worked.
Good night and Love -- Pepper
DEFINITION: (adjective) quickly disappearing; transient.
Kick 'em back, Kick 'em back, -- Way back, ChemoSabe.
Doctor day today.. You are just NOT going to believe our report.
Arrived waiting room at 12:45 for 1:00 p.m. appointment. We were still in the waiting room at 3:00. Hoo Hum... Back to the doctor's exam room. Saw the test results on the table. I scrolled right through them. As I was reading I was searching my pockets. ChemoSabe asked what I was looking for --- Kleenex. I read on.
Doctor came into the room and caught me reading. I get up from her chair and she sits immediately and begins speaking. I don't read the reports to ChemoSabe. I am always afraid I will read something out loud I don't understand or that is bad and I want to digest it first before he knows about it.
She begins -- Lesions in spinal area of neck have decreased in size (Ephemeral). Other lesions are unremarkable -- meaning no change. No larger, no smaller. Fractures in the lumbar area have not grown and are quite stable. No abnormal enhancement seen in any area. Right hip which holds the prosthesis and shows no evidence of avascular necrosis. No evidence of focal skull base diploic myelomatous disease is noted.
Surely by reading this, you too can see the report is extremely uplifting and overwhelming. I patted him on the back and told him that was why I needed the tissue. PRAISE!!!
We continued on with our visit with the doctor with her telling us if we just ask God for the things we need, He will provide. She tells us her husband is always telling her to pray to God and thank Him for everything.
A second stem cell will not be necessary. We are going on to the Consolidation Phase. A port will be placed on Friday and the camera bag with two chemos will be hooked up Friday. The steroids begin on Friday with the Thalidomide and the rest of his meds. Labs will be every day at the Infusion Center where he will be monitored extensively. His port will be flushed each day and he will be given a blood transfusion, platelets, magnesium or potassium, when and if needed. Back to the old grind stone. This will happen for about two weeks.
Platelets right now are 173 and he will probably go down below 50 in the next two weeks. WBC is now at 5.92 and will fall to 0.2 at some stage, as he did in the past. We are ready. We are thankful. We are prepared. We know what to expect.
This treatment will be back to back - six to eight weeks apart. Then he will have regular check up every three to four months up to a year. After that it will be yearly visits.
Full day of work tomorrow in getting everything lined out. Work, work, work. I watched the special on Patrick Swayze this evening and he just finished a television with working 12 hour days while taking chemo. He is in his tenth month of pancreatic cancer. Life span is usually six months. With watching this, he believes work kept him going. I believe that, too. I see the patients from out of state compared to the ones that are still able to work and I see more progress in the workers.
We went in separate vehicles today since we both came from work. As I entered our neighborhood my cell phone rang. ChemoSabe suggested I let the kids out ant go back and meet him to see my mom. I did. He brought her chocolates. She was in a simple minded mood today and didn't make much sense. Clock to her was a phone, rubber gloves meant kleenex and Johnnie was Jim. I was her mother at one point and grandma has been gone since 2001. As I watched how she relates to ChemoSabe and I watched him, I was reminded of why I first fell in love with this man. I had a sudden urge to go over and sit on his lap and just lie all over him as if he were a pillow. Of course, my mother would have come unglued. Even though we have been married for 21 years she thinks it very unappropriate for people to do those things. ha...
Gosh, I feel like a load has been lifted. Our transplant RN is thrilled, the doctor is happy and the Infusion Center nurses are in for another treat. He will be taking three extra drugs, but that is a drop in the bucket.
Thank you for your prayers... They worked.
Good night and Love -- Pepper
Tuesday, January 6, 2009
Groove -- Word for the Day -- Tuesday, January 6, 2009
Groove ---
Definition: 1: a long narrow channel or depression2 a: a fixed routine : rut b: a situation suited to one's abilities or interests : niche3: top form 4: the middle of the strike zone in baseball where a pitch is most easily hit 5: an enjoyable or exciting experience6: a pronounced enjoyable rhythm
We have begun our groove. All of the above would be appropriate for what has happened since Sunday through today and what is going to happen the rest of the week. ChemoSabe had the MRI on Sunday, MUGA on Monday and the bone marrow biopsy this morning. The biopsy went quite well this morning even with only one lollipop and one Ativan. I thought he would have an anxiety attack last night when I told him we didn't have two lollipops. Poor baby... ha
MUGA???? you are wondering? It is a form of x-ray where the technician takes blood out of your arm, mixes it with radiation, puts it back in your arm, waits an estimated amount of time, takes it back out of your arm and inserts it again. That's right... takes out twice and inserts twice. Some plugs are affixed to the chest area and the patient is hooked up like an ekg then x-rays are done.
Last night while we were watching our pre-recorded soaps (ChemoSabe got hooked on "The Young and the Restless" so I record it each day), ChemoSabe was lying in bed and rubbed his hand across his chest. He jumps up and runs over to my side of the bed as he was telling me about the guy nurse that did his test today. He felt he was either new or bored by the way he was handling things. Well, he must have been something because ChemoSabe raised his t-shirt and lo and behold --- the three metal buttons were still attached to his chest. YEP -- we are back in the groove.
While he was in a waiting mode yesterday, he dropped by and visited with his nurses in the Infusion Center. The place where we spent many days and hours of waiting for chemo bag changes and line to be flushed. Many hours waiting for blood transfusions, potassium and magnesium infusions. They were overjoyed with his visit. He received hugs and kisses and questions about when they would be working on him again. NEXT WEEK!
He has such energy. He is enjoying life and working to his heart's content. We are praying this second round of whatever will not be a hard road. We will know tomorrow afternoon if he will go through a new protocol, a second stem cell or keep on the Consolidation.
We love you.... Will keep you posted.
Good day and Love -- Pepper
Definition: 1: a long narrow channel or depression2 a: a fixed routine : rut b: a situation suited to one's abilities or interests : niche3: top form 4: the middle of the strike zone in baseball where a pitch is most easily hit 5: an enjoyable or exciting experience6: a pronounced enjoyable rhythm
We have begun our groove. All of the above would be appropriate for what has happened since Sunday through today and what is going to happen the rest of the week. ChemoSabe had the MRI on Sunday, MUGA on Monday and the bone marrow biopsy this morning. The biopsy went quite well this morning even with only one lollipop and one Ativan. I thought he would have an anxiety attack last night when I told him we didn't have two lollipops. Poor baby... ha
MUGA???? you are wondering? It is a form of x-ray where the technician takes blood out of your arm, mixes it with radiation, puts it back in your arm, waits an estimated amount of time, takes it back out of your arm and inserts it again. That's right... takes out twice and inserts twice. Some plugs are affixed to the chest area and the patient is hooked up like an ekg then x-rays are done.
Last night while we were watching our pre-recorded soaps (ChemoSabe got hooked on "The Young and the Restless" so I record it each day), ChemoSabe was lying in bed and rubbed his hand across his chest. He jumps up and runs over to my side of the bed as he was telling me about the guy nurse that did his test today. He felt he was either new or bored by the way he was handling things. Well, he must have been something because ChemoSabe raised his t-shirt and lo and behold --- the three metal buttons were still attached to his chest. YEP -- we are back in the groove.
While he was in a waiting mode yesterday, he dropped by and visited with his nurses in the Infusion Center. The place where we spent many days and hours of waiting for chemo bag changes and line to be flushed. Many hours waiting for blood transfusions, potassium and magnesium infusions. They were overjoyed with his visit. He received hugs and kisses and questions about when they would be working on him again. NEXT WEEK!
He has such energy. He is enjoying life and working to his heart's content. We are praying this second round of whatever will not be a hard road. We will know tomorrow afternoon if he will go through a new protocol, a second stem cell or keep on the Consolidation.
We love you.... Will keep you posted.
Good day and Love -- Pepper
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