Malinger -- Word for the Day -- Wednesday, July 30, 2008

Malinger
DEFINITION: (verb) to pretend incapacity or illness to avoid a duty or work.

Steroids have kicked in after two doses of five each. Mind is telling him to keep on trucking, but I see his body asking him to slow down. There is no doubt he will not malinger.

ChemoSabe traveled extensively today. He could not sleep so was up at 3:30 a.m doing paperwork, letting the kids out, making coffee and ironing his own clothes. He was gone from the house by 6:00 a.m. to Shreveport and then around to Camden. He finally arrived home for supper at 8:45 p.m. He is now changing light bulbs in our upstairs office. All he has to do is lay his head on his pillow and I believe the body will win.

He will not malinger tomorrow either. He and assistant are traveling to a new client job site to finish up some training. He will return for his afternoon labs and urine drop off. At 10:00 p.m. he will leave the house again to travel to a job start at a new client at midnight. I should see him home around 3:00 a.m., if then.

He has had a new woman, Gypsy (gps) with him all day. All I have heard about her today is how massively he is in love with her. She tells him where to go and how long it will take him. She tells him where to eat and how fast to drive. When he makes a wrong turn she tells him to make a U-turn and good back. (Just like a woman). He doesn't go back and makes her reroute (Just like a man). That is all he has talked about this evening. Gypsy, Gypsy, Gypsy....and how he loves her. I programmed her for him. If he keeps on talking about how good she is, I may just route his "home base" to somewhere else. They would both be surprised if they ended up somewhere else! ha

I thought about malingering this morning. I am more tired when I get up than when I go to bed. I try to think it is the heat, but my bones hurt also.

We have two more days on the Dex and Thalid. Thursday is the MRI and bone marrow biopsy. Billy had his testing done today. He gets his Big Mama Jama dose of chemo on Sunday and Transplant on Monday. We are excited. Can't wait to see how he responds.

Roger and Ruthie got to go home to OKC. His hip will have to await treatment until after the transplant. His transplant will have to wait until after a heart cath or stints. His port is still in for daily labs at home. So he may be home for three days to three months. Then they have to put up with their home air conditioning being out. It was 80 deg as I was talking to Ruthie. Please keep them in your thoughts and prayers.

We are going out to eat with Billy and Sherry on Friday. We need to celebrate the guys having our new kids. We have a lot to catch up on.

We are working on a weekend trip for the weekend of August 8. I hope everything works out with the weather, labs, WBC and everything else. I am hearing some people really crash after the transplant so we don't want to end up with cabin fever afterward. We don't want to malinger.

Well, Loves --- I am worn out and heading for bed. I know this surprises you, but I have run out of words to say! ha

Good night and Love -- Pepper

Scrupulous -- Word for the Day -- Monday, July 28, 2008

Scrupulous
DEFINITION: (adjective) acting with extreme care.

HOUSTON -- WE ARE READY FOR LIFT OFF! ChemoSabe has a date for the stem cell transplant... Wednesday, August 13.

WBC today is 4.5 with platelets coming up to 60. We start the steroids and Thalidomide tomorrow with half doses than before. Instead of ten Dex we get five and instead of four Thalids we get one for four days each. Then we taper off the other meds into a downward spiral. Sound confusing to you? You ought to see the medication schedule he got today.

He is going to labs twice a week (Monday and Thursday). I marked my calendar today for the 24 hour urine samples to be taken in on those days. That means the collection begins on Sundays and Wednesdays at 7:00 a.m. I would have never thought I would be marking a urine collection reminder on our 21st wedding anniversary which is next Wednesday! ha

We got to ride on Saturday. ChemoSabe had planned for us to depart early a.m. and return before 1:00 or 2:00 p.m. before the heat settled in. Didn't happen. It was so nice when we left and the air had a cool breeze we didn't pay attention to our route or the time. By 1:00 we were about 50 miles from the house on the back highways. We did make frequent stops and drank plenty of water.

ChemoSabe sneaked out and got donuts for breakfast instead of the famous bacon I bragged about. I am hypoglycemic and when I have sweets, etc. I really need a nap as it drops my sugar. So, I ate just one. That combined with the heat... Oh, Man... Then, with ChemoSabe not being use to the heat thus far this summer and the sun, it was starting to take its toll. BUT, we did not get sunburned. We kept that head lathered up real good. I have NEVER been able to pour water on him. I got to then. I told him to bend over and I poured a half bottle of water all over his chrome. Needless to say, we crashed when we finally got home at 4:00. It was like old times.

We wanted to get out Sunday for another "short" trip, but his bones and muscles were hurting. His hip was hurting enough he couldn't stand for long. I took that opportunity to bath Maxie on the deck. I got the three little ones in the shower with me on Saturday, so she was the last. Then I looked around at the deck. Haven't touched it this year. It was loaded with pollen and dust. We have four decks. Couldn't have the four clean kids lying around on a dirty deck. So, I took a pine sol spray bottle and the water hose and did the upper deck and all the patio furniture. I had the blond syndrome because I didn't think about the power washer until I finished.

Today Poppy was here!!! He came home from work and I cranked up the power washer and he did two decks. When he ran out of gas I started it back up and away he went again. Used four tanks of gas. We will do the lower deck tomorrow and the gazebo. He may be worn out in the morning, but he truly enjoyed it. I believe it worked the soreness out of his hip, too.

Billy and Sherry should be back in town tomorrow. Roger is still doing Infusion. He is being scheduled with a heart doctor. There is a new guy that has been visiting the church where I work and he has a neck brace. He can't start MM therapy until he has neck surgery. I believe he may be staying in the cancer guest house across from the church.

ChemoSabe is fortunate. He has been working the last three weeks and he plans to continue on. He basically feels well. He claims he feels better than when he was diagnosed. He has lost most all his muscle. His arms and legs are thin and getting thinner. His arms tired this evening with holding and moving the washer wand back and forth. He is at his normal weight (205), but his slacks, jeans and shirts are becoming empty in the seat. He stills walks and acts the same, just in a thinner body. His skin is immaculate. So moist, clear and smooth, it just shines. He is worried his eyebrows are getting much thinner and thinks he is losing them. I told him he felt the same about his hair and now he loves it! We laughed.

My biggest fear when we started this journey was he would feel so uncomfortable about his appearance when it came time. You who know him can remember how he was about his hair, face, clothes and just his overall appearance. I was afraid he would let that somehow stand in his way of getting better. He's so vain! ha. I don't worry about that anymore. He has accepted the challenge well and has loved every minute of it. He stills worries about a hair sticking up, but instead of pulling it out now, he just runs a razor over it... He even lets the son rub his head when he would get fighting mad if anyone wanted to touch his hair.

He is off to sleep so I better get going. If he wakes up he will be looking for me. I got to stay out of trouble with that guy. Especially this week with all those hormones raging beginning tomorrow.

Oh... Word for the Day? Scrupulous -- We will be quite scrupulous the next two weeks in preparation of the new babies arriving on August 13. Should we have a Baby Shower?!?!? I can't wait to be the proud mom of over 5 million babies. Who would have thought -- 21 years -- I can't have children, the chemo cleaned him out and now this! It all comes back to ---

God is good, All the time!

Good night and love Pepper

Indistinct -- Word for the Day -- Friday, July 25, 2008

Indistinct
DEFINITION: (adjective) unclear, uncertain.

It has been a good day. Started out very, very hot with a early afternoon thunderstorm. Actually a downpour for about 45 min to an hour. Big E was here and he slept for two hours throughout the thunder booms and rain pelting away on the windows.

Chemo Sabe on the other hand had a good/bad day. He was up and out of here by 6:30 a.m. Back in time for his 12:00 labs... Actually, he was an hour late. What does that tell you? I wasn't with him! He got his platelets and was late for his 2:30 disconnect from his port. Remember they stop pulling at 3:00. He arrived at the Hospital Radiology at 4:00. Guess what? He wasn't suppose to be at the hospital, he was suppose to be at the Outpatient Center/Radiology. He was already stressed about his time frame and didn't want to be with the port over the weekend. Luck was with him. Hosp Radiology made a call and in ten minutes the port was pulled. Ahhhhhhh

On his way in I was talking to him on the phone and getting gas and as soon as I shut the door I exclaimed with a bit "S______!". I locked myself out. He was about six miles from the house. As I waited I thought of my On-Star. I called them and in 2 minutes and 52 seconds my door was unlocked. Then I looked up and there was Chemo Sabe. It turned out for the best because then he didn't have to take me home for my extra key...

We loaded up when he got home after about an hour with the son, and rode over to pick up Sissy. She is my lifetime friend (remember the one we call his mistress that had the kidney/pancreas transplant). We cruised on down toward Hot Springs and stopped at O'Brien's. It is about 17 miles from the house. We ate, laughed and caught up on things. We have not seen her in four months. We talk on the phone and she keeps up on the blog. She has been working 10-12 hour days, six days a week. She works for the State.

Since I don't take passengers, she rode on The Beast with Chemo Sabe. She hasn't ridden in about three years. We REALLY need to get her out more often. She fell totally in love with Chemo's head. Kept telling him how good he looked. If she turns up dead, I didn't do it. It was the chemo! ha I guess, Ladies, that is a good deterrent for anyone you suspect of an affair. Just give them a little chemo and it will kill the lover!

We have a tentative schedule to begin testing again on August 7. We are indistinct about some of the schedules for labs. The doc said yesterday twice a week, but Infusion gave him a schedule today of daily labs with a shot. We think the growth factors are over.

We are also indistinct about some of the meds he will be taking when his platelets are 75.0. The doc told us one thing, but the orders and the RN tells us different. I will be making some calls on Monday to get a better grip on things.

We just want to be able to do what we want, when we want and where we want this weekend without planning around a daily visit. He is already talking about fixing my breakfast in the morning. Ahhhhhh, the bacon maker.

Although he had his trip, his UAMS visit, his stress, the locked out spouse, and the ride with a leisurely dinner, he doesn't seem quite as tired. I believe the port and the relaxation made a big difference. AND, he got to be close to Big E and hug the son this afternoon.

It is late...

Good night and Love --- Pepper

God is good, All the time.... All the time, God is good.

Circumvent -- Word for the Day -- Thursday, July 24, 2008

Circumvent
DEFINITION: (verb) to get around.

Had a good visit with the doctor today. Chemo Sabe went in to lab early this morning so we could have the result back by our 2:00 appt. WBC was 5.5, but platelets are 35. He was advised by the nurses today that he would probably need platelets before the weekend.

So, here we go... 3:00 p.m. each day is the cut off for any port to be scheduled for the same day process. It was 2:32 p.m. when the doctor told us this. AND, he did need the platelets before the port came out. Platelets take about 20 min, BUT when the Infusion Center was called they could not take him because they were behind three hours. We would have to wait until early Friday morning.

"Won't work", says Chemo Sabe as he began to try and circumvent. Remember he was planning on being out of town on business. So after we waited another hour for a new schedule we were told he would have to wait until Monday. After some checking and timing on travel time, we think he can get back in town by 1:00 p.m. When we left we got the call that he can get platelets at noon and is scheduled to get the port out at 2:30 p.m.

The next two weeks he has labs twice a week. We will be waiting for his WBC to come up to 75. I don't think I have ever seen them that high. Growth factor shots have discontinued as of today. When the WBC does get to that level then we will begin "Bridging". Listen up... this will be a test question.

Bridging is the treatment before the stem cell transplant. He will not be taking chemo thru the bag, but will be taking chemo by mouth. The Thalidomide he has taken off and on throughout this process. He will also be put back on the Dexamethodone (steroid) for four days. He will begin to take .81 aspirin and continue on with the other meds he is now taking. This process will continue until we get a call he is ready for the transplant. As I mentioned, his labs will be twice a week, on Monday and Thursday. We think we have two weeks off, BUT our doctor told us the Big Doc may want him back in a week since we are not out-of-towners. We are ready!

Chemo Sabe keeps circumventing, but he also admitted today if the time gets cut short it is better to go ahead and get it over with. I really never thought there was any reason to delay it. I knew when he got back full into work, he tends to forget about the more important things. But, I am glad his work makes his forget about his illness, at times. Don't we all do that?

He continues to be very tired in the evenings. We did get the bikes out this evening and ran down the road and ate --- pizza. Then we just rode for about 30 minutes.

Hate to cut it short.... going to bed and he is working on computer.

Thank you for all you do --- Love -- Pepper

Impeccable -- Word for the Day -- Tuesday, July 22, 2008

Impeccable
DEFINITION: (adjective) flawless.

I have to tell you from the git-go the Word for the Day will be a difficult one. I guess I could have chosen another, but I try to stick to the Yahoo Word's, except for rare occasion. Let's see --- Impeccable...

Chemo Sabe's WBC is still at 0.45 steadily. The antibiotic (Red Man) given yesterday was the last. He has felt very well this week and has gone to work at least for four hours, except for today and he came right home after his visit. He is running out of fuel. He did, as I predicted earlier this week, have to have platelets today. Hey... there we go... my prediction was impeccable!

We both have the sniffles this week with sneezing. I believe it is the dust in the air. Our yard is very dry and the decks are dusty. I use to pull the water hoses out and sprinkler the yard at night, but I have not even attempted that this year. I believe we are the only people in our block that doesn't have underground sprinklers. Our yard still usually looks just as impeccable as the others. Oh my, that word is easier than I thought.

We have our doctor's appt with the Big Dog on Thursday. I am hoping Chemo Sabe's WBC will start climbing tomorrow and make a massive improvement by our appointment time. If that happens I could see the port coming out by Monday. Hopefully, by Saturday, but I am far reaching for that. He has already hinted he wanted a late lab on Friday because he is planning to go to south Arkansas on a business trip. Helllooooo.... we will see how he feels. Our bikers friends are going to a rally this weekend, but I don't see us able to join them. We are hoping the next three to four weeks will allow us to do a short trip. You will be the first to know.

Big E has been coming over in the mornings to ride to work with me so he can attend VBS. I was concerned about how I was going to keep them separated because of Chemo Sabe's WBC. Well, today when he came in Chemo Sabe (Poppy to Big E), was coming downstairs and then Big E went upstairs and went right back to bed until Poppy left for work. Perfect timing. He is really cautious about being around Poppy. He cleans his hands with the pump at the door before he comes in. If it isn't there he gets disgruntled. You know how grandkids are...to the grandparents they are just (you guessed it) impeccable.

I installed a new horn on my bike this evening while Chemo Sabe watched. My old one sounded like a billy goat with a cricket in its throat. After working to get the two rubber gaskets and four metal washers on I finally got it tightened up. We were very proud of me. I should have plugged the wires in and tried it before I mounted it because the new one doesn't sound like a flip either. We have decided to go to the showroom floor and toot some other horns on the same make and model. I could have swore I didn't wear my blond wig in there when I ordered it, but it seems they thought they sold it to a dumb blond.

We had a light bulb out in one of the fixtures in the garage for about a week, so since I did so well on the bike I decided to change the bulb. Couldn't get the new bulb in. When Chemo Sabe told me to get down and he would screw it in, I had the thought of "how many _____ does it take to screw in a light bulb?" I didn't get down, but kept trying and discovered the metal part had come out of the old bulb and was still in the socket. Well, after about 30 minutes with the both of us using needle nose pliers and pulling the metal apart, we finally gave up and have decided to call an electrician. We have always wanted ceiling fans out there anyway. Our task was not impeccable.

Since it looks as if I am rambling now and I see you getting bored and probably drifting off yourselves, I will call it a night and close.

Billy and Sherry will be back the 29th. We are hoping to be able to go out to eat with them one evening before Billy gets his transplant. Please pray for their safe return.

Roger and Ruthie are still here. We have not been able to talk to them this week since Chemo Sabe has been under the bags all week. Please pray for his uplifts in getting things under control.

The last few weeks have seemed like a race to the finish and Roger got out of the gate first. Now Billy is in the lead.

Good night and love -- Pepper (Grammy this week)

Nondescript -- Word for the Day -- Sunday, July 20, 2008

Nondescript
DEFINITION: (adjective) without distinctive qualities; drab

WBC - 0.25, Platelets - 35, CRP (crap) 9.5 -- Doesn't look very promising, does it? We probably have four to five days to go on the WBC before they come back up since they fell again yesterday. I hope to see a rise beginning tomorrow. I foresee another round of platelets by Tuesday.

We had hoped to sleep late this morning, but we forgot the son was coming over at the crack of dawn to clean up the debris he left Wednesday from the tree cutting he and friend did. I heard the wood splitter kick in around 7:00 a.m. We got up and dressed with Chemo Sabe starting a pot of coffee and fixing sausage, toast and gravy. As I slept walked down to the dog yard I discovered another person was on the scene. I did not recognize the vehicle. Lo and behold, it was a childhood friend of my son's that came to help out. What a pleasant surprise. Then another friend came that spends a lot of time with son.

Two cut the logs, one used the splitter and I stacked the wood. We have a pile about 7 ft. high and about 12 ft. long. More than enough for this winter. Then to the back yard. Most of it was dead so down to the woods it went. Everything done by 10:00. With everyone gone, the son and I started lawn mowing and weed eating. Around the corner of the house came Chemo Sabe and announced he was feeling well enough to take himself to UAMS. So, off he went. I was encouraged he was feeling better and looking so well.

I received a call from him at noon announcing he was getting his Red Man antibiotic and they advised him he would be needing two units of blood. That would be 1-1/2 hours per bag. He still felt well so I continued on with honey-dos. After arriving home at 4:30, we cooked out and crashed in the den. He is still eating well. Two BBQ chops, a sweet baked potato and salad. I fixed two pumpkins pies today. One for the friend that helped Wednesday and one for Chemo Sabe. He ate two pieces tonight.

He plans to be in the office in the morning with making his daily trip to UAMS around 10:00. We expect he will receive another round of Red Man and hopefully on his way to a little rest and relaxation.

The four year old, Big E, will be going to work with me in the morning for vacation Bible School. We will have to plan his daily visit here in the mornings this week around Chemo Sabe's coming or going so they will not make contact. Big E seems to understand and tells Poppy he hopes he gets better soon.

We are heading off to bed. I hope I am able to rise and shine early from stacking wood. These old bones aren't what they use to be.

I felt guilty about doing yard work on Sunday. After all, it is the Lord's day. Our neighborhood is generally quiet on Sundays, but this morning I believe we got everyone up. Thank you son and friends for all you have done. Now it is time to burn the six big piles we have. I am wanting to wait to cooler weather. Son is wanting to do it before the burn ban is in effect in about two weeks.

Oh... almost forgot -- there was nothing nondescript about our weekend. Maybe that is why Chemo Sabe wanted to go it alone today. Pepper would have probably had a little chili with it today! ha. I really ain't so bad..... If you believe that, I have some swamp land.

Good night and Love -- Pepper..

Remember -- God is good all the time and all the time God is good!

Patient -- Word for the Day -- Saturday, July 19, 2008

Patient

Definition:
1: bearing pains or trials calmly or without complaint
2: manifesting forbearance under provocation or strain
3: not hasty or impetuous
4: steadfast despite opposition, difficulty, or adversity
5 a: able or willing to bear

I looked throughout the blog and can't believe I haven't used this word before, so bear with me this evening. Be patient as you read.

Patient and/or patience is a person, an ability, a situation and totally not where I was today. Just when you think you have the system figured out, someone comes along and puts a stick in your spoke.

TGIF -- I really look forward to that day because it is my day off. I realize for now it is a day to make a routine trip to UAMS. I have been fortunate this week in that Chemo Sabe felt so good to take himself. Labs showed WBC being at 0.50 on Thursday so it was evident.

We were at the Infusion Center at 9:00 a.m. as requested for the rep and head nurse to view the port infection spot. It was still oozing a yellowish/green substance. They took photos for use in training and for side effect purposes since it was caused by a new dressing that came out. We were told to go back to the Infusion Waiting area to await further treatment.

We waited about an hour. We again had the experience, as in the past, of patients coming in after us and waiting about 15 minutes and being called back. We were patient. When we finally got back we were advised the antibiotic drip (Red Man) had to be done again. If you remember from yesterday, that takes two hours. This gave me an opportunity to leave and do some honey-dos. Get syringes for Parker, buy 55 lb. of dog food along with cases of canned fruit to quench Chemo Sabe's taste buds. He has been craving fruit since the first round of chemo.

After picking him up at 12:30, we headed home. We were going to buy some more new fish for the aquarium. I have been transferring my 35 gal tank to a 55 gal tank and it has been working nicely. Well, a phone call from UAMS put a dent in our afternoon planning. Why were we not surprised? Platelets were down to 15 and we needed to return. Chemo Sabe tried to sway them to today, but they insisted we come back. We took our time and got back around 2:00 after a quick sandwich.

Again, he had to wait in line so I just dropped him off and went to Penneys. After all, they were having a weekend sale. These trips really are expensive.

Today we decided we would go back to the 3:00 p.m schedule. Arrived at 2:50 and talked with Roger and Ruthie. Patients began arriving after us and going back within 15/20 min. We were patient. At 4:30 p.m. Chemo Sabe went to the desk... We went back and was informed another antibiotic drip (two hours) was necessary. This is where the 'stick in the spoke' comes in. The young lady at the desk had not turned in his sheet for treatment. DUH!

If you ever see me coming down the hall crying -- Katy bar the door! You will know I am one highly hot momma. Hence the biker name "Pepper". That is far, far and few between, but it ain't a pretty sight. To keep from embarrassing Chemo Sabe I just turned and went back to the Infusion Waiting and sat to calm myself. I realized then he needed something to eat so I went to Wendy's..

You know, when you are having a bad day, sometimes it just gets worse. My order was completing opposite of what I asked for. I was in the drive through and the young lady asked me if my order was for take out or dine in. Am I the only sane person today? My son tells me if people were more like him and myself, the world would be perfect! ha

Picked Chemo Sabe up at 6:30 p.m. We both crashed in the den until 10:00 p.m.

Sorry, you had to go through this, but there is a good ending. A smile came across his face as he opened an employee from an associate in Atlanta. Two do-rags came out of the brown envelope. BT sent them to him and explained he envied Chemo Sabe for riding a motorcycle because he found it difficult to sometimes ride a bicycle. Thank you, BT for making our day of non-patience worthwhile.

Don't you think patients deserve being non-patient at times when they have to wait for treatment so long? We are changing our schedule tomorrow to noon. We tried the early, the late and we still can't seem to figure out the system. Everyone has the same appointment times, so what could it hurt?

We truly are patient people, but .......

Oh.... Billy and Sherry got to go home yesterday. Yeaaaaaa... They will be back for the stem cell transplant on July 29. We are hoping Roger and Ruthie are next.

Good evening and love --- Pepper (mean momma)

Lethargic -- Word for the Day -- Thursday, July 17, 2008

Lethargic
DEFINITION: (adjective) lacking energy; sluggish.

Week is ending up quite like I expected. Chemo Sabe's WBC is 1.56. He began wearing his mask today, though not black like I have requested in the past.

We rode for about 45 min. last night with the kids. We went to Chili's for his birthday dinner and wasn't gone from the house but about two hours. He went to his regular labs at 3:00 p.m. and didn't get home until 6:00 p.m. One of his nurses on Monday indicated his needed his dressing changed and the port entry looked at on Tuesday. When Chemo Sabe discussed this with the Infusion nurse (the one I mentioned a couple of month's ago he talked to about her attitude), she informed him it looked okay. She called a higher up nurse and he said there was nothing wrong with it. Well, yesterday there seemed to be a concern since a seepage of green matter was visible and a culture was run after the dressing was changed. They were talking infection. Remember, the port goes into the juggler vein. This worried him all night. He was up and down throughout the evening and ended up in his favorite spot -- the recliner in the den.

This morning the sight looked as if it had collected a yellowish substance about the size of a quarter. Instead of waiting for the 3:00 p.m. appointment he decided to go on in. Ended up he was there until 12:30 p.m. for a massive two hour induction of high dose antibiotic. The antibiotic is called Red Man because it is so strong it can turn the face red and blister. During this time he found out about his WBC being 1.56. We have to keep in mind that it has to be below 1.5 before the growth factor can be injected again.

When I got home from work he was very lethargic. The son and a friend came over to cut down some dead trees and Chemo Sabe went out with me to the bottom yard and I thought he wouldn't make it back to the house. When he asked me if I was taking him into clinic tomorrow, I knew then how bad he really felt. So, I took the easy way out for supper and fixed his favorite -- pizza.

He looks quite pale this evening and is losing his appetite. His culture came back and the infection is NOT in the blood. The site is not red or swollen. They believe the new dressing that has a pre-applied antibiotic has irritated the skin around the entry site. These dressings have only been in use the last few weeks. A representative will be in the area in the morning and they want Chemo Sabe there early to visit with them so they can see first hand what is happening.

With all that, we have had a very good and busy week. We rode Tuesday night and last night so we got in some good weather time. We have both worked hard this week with him preparing for his crash time some part of next week and me preparing for vacation Bible school at the church where I work. We feel certain he will be neutrapenic all weekend. We hope the growth factor will kick in and he can be back to work by Monday. Alll next week will be a tough week for me to squeeze in time to take him in if he is unable. BUT, that is my most important responsibility. We will have plenty of volunteers to help me out.

Speaking of lethargic -- I am there this evening myself. Your prayers continue to work and we are grateful. God continues to show us how he works, sometimes in just the smallest of ways.

Please continue to remember our new friends at the MM Center. They are all doing well, even with their neutrpenia. They all have indicated how much better they feel the second go round of the chemo. I think a lot of it is we now know what to expect with the chemo process and it doesn't seem as scary. I guess my next "Word for the Day' should be "Chemo". What do you think?

Prepare yourself for the next test. You NEVER know when it will be right around the corner!

Good evening and love -- Pepper

p.s. Chemo Sabe just told me a funny, funny story... It could be one of your tests, in fact. Beverly, the compassionate nurse, told them today that she really appreciates the patients that have learned and know the medical terms used during the MM process. She tells that one patient came in one day and told her he was "Neutragenic"... For some of you guys that may not know -- Neutragena is a brand name for a product used in skin care, shampoo, etc.! ha. But, then, when I started this blog I had to apologize because I had spelled it wrong throughout my journaling. Oops... Night, Night.

Recuperate -- Word for the Day -- Tuesday, July 15, 2008

Recuperate
DEFINITION: (verb) to regain health after an illness.

Well, Friends, I believe Chemo Sabe is having an affair. I washed his slacks last evening and when I took them out of the dryer a comb fell out of his pocket. As I approached him while he sat in the recliner I exclaimed, "Are you having an affair? Whose hair have you been combing with this?!!!!!!!" He looked sort of stunned and then we laughed.

We have a doctor's appt at 2:00 p.m. today to see how he is recuperating. His WBC was 2.59 from Sunday. We do not have his lab from yesterday, yet. I believe it will be time again for the mask, but he thinks the growth factor shots will boost his WBC. Stay tuned for the "rest of the story".

He still continues to work all day. Yesterday when he got home he went straight to the recliner WITHOUT turning on the tube. Usually, it is the tube at full throttle and the remote keys clanging from the rapid key strokes. We were upstairs in bed by 8:15. He was out like a light as I read the paper and watched my pre-recorded soaps. The kids must have been tired, too, because they went straight to the sun room and I didn't hear a peep out of them until the coffee pot beeped and paper hit and door step this morning.

I am looking forward to both of us recuperating. I believe I have felt more of the symptoms of the MM than he. I know, I know.... count my blessings!

A little bird told me that tomorrow (Wednesday, July 16) is Chemo Sabe's birthday... For the past two weeks I have been thinking it was Thursday. I suppose that isn't as bad as him forgetting my birthday about ten years ago. You're right...I won't let him forget that one! ha

Here is the "rest of the story". WBC was 10.5 yesterday. I tell you this as I whisper, "he was right about the growth factor shot boosting him." BUT, he was SUPPOSE to be below 2.0 by today. The doctor discovered he was getting the growth factor shot and he wasn't suppose to. He is to begin it when the WBC is. 1.5 and not over. So, we have lost about three days of the cycle. We calculate he will be neutrapenic by the weekend.

With that, we came home, changed clothes, pulled the bikes out and went to Abe's Feed House and stuffed ourselves on fish, fried food and dessert. We asked Roger and Billy to join us, but Roger is getting lasix and Billy's WBC is 0.034. Yes, he is very, very neutrapenic. But, they both feel better than the first round, just as Chemo Sabe, so this means their recuperation will be quick.

We were also advised today that after we crash and become neutrapenic, and after the growth factor brings the WBC back up again and he levels off and is recuping from the second round of chemo, we should have almost two weeks off before we have to go back for the stem cell transplant. We are hoping we do get two weeks to recover and get back in the full swing at work before taking another dive.

Before the transplant, the heavy dose of chemo will be given 24 hours before. This will knock him to his knees and the chemo only takes 20 minutes. We are already beginning to hear some 'horror' stories about it. Such as, going in with a lot of energy and not being able to walk out. BUT, haven't we already heard stories about what we have gone through already. Won't be any step for the stepper, will it?

Guess we will cal it a night. Everyone in bed, but me. We didn't get home from our ride until 9:30. It was nice to feel the cool air on our faces and the temp being 77 deg. Chemo Sabe tells me it feels better to ride bald than with hair. Is he telling me I should get shaved? GET OUTTA HERE!

Love -- Pepper

Dissipate -- Word for the Day -- Sunday, July 13, 2008

Dissipate
DEFINITION: (verb) to spread out or scatter.

Wasn't a busy weekend, but now it has come and gone. We can't really plan anything because of our daily trips to UAMS, but it is better than the two trips a day in the past. Which brings me always back to KJ's sermon a couple of months ago on "Why Count Your Blessings When You Can Complain?"

The Infusion Center waiting area has been almost empty the last week. Seems our chemo group has dissipated. We are only seeing two or three from our original group. We are not even seeing the newbys that were starting when we began the collection process. We think it may have something to do with the July 4th holiday and maybe everyone will be back from a break this week.

I see tiredness in the eyes of our friends. Their attitudes are high with encouragement for each other. We are sharing stories of how far we have come and what we have been through. We are also sharing stories of what the next steps are. I also see tiredness in the caregivers eyes. I feel it in my own. I continue to have the same headache I had last week, but Chemo Sabe has had one, also. It might be pressure from the heat with the possibility of rain.

The hiccups dissipated last evening with the disconnect of the bag yesterday. AND, the boar hog snoring is gone. We both feel since the RN told us the hiccup prescription was a muscle relaxer that it totally relaxed his throat and he could not control the constant, unfamiliar snoring. What a pain in the..... Well, we are glad they are gone.

I did get out a little on Friday and do some shopping at Garden Ridge. Ladies, they are having a 50% off sale on patio items. I bought more patio cushions and I picked up two ceramic pots that are so big I could totally sit down in them. They weight about 35/40 lb. each.

I went on over to Sam's to do what I call our every three month shopping. When I see the receipt, that is what I try to convince myself when the total is three times more than I expected. I had all the back seats collapsed in the Tahoe and had things hanging off the sides of the seats. I REALLY had to get that stuff unloaded before Chemo Sabe got home. I should have eaten before I left so I wouldn't have bought so much! ha.

Well, he didn't kill me over the weekend. You say, "Why?" Because he hasn't read the last blog. ha I will have to admit since the steroid is dissipating out of his system, he was a little crabby yesterday. I just reminded myself how I was when I went through menopause and think of him in the same way.

WBC dropped to 3.5 yesterday. It wouldn't surprise me if he will be in the 2.0 or below tomorrow. He was quiet run down today and hasn't been up much except to go back to UAMS. We both came home and had popcorn for supper and crashed on the couch. He came upstairs about 8:30 and has been in bed since. I really don't see him going to work tomorrow, but he does have some appointments scheduled.

I took my new camera into the Infusion area yesterday and made some very good photos of our MM friends. I had a chemo brain fart and made post cards with their individual photo on the front and ours on the back. On their side they can update us on their progress when they go home and just put a stamp on it and mail it. Our address and photo is on the mailer side. Gosh, sometimes I just amaze myself about my brilliance... ha

Lovenox was discontinued today (blood thinner). The grow factor began today and will last each day until the WBC goes down. We believe that will be the deciding factor for the induction. Hope it doesn't end up last time and that patients talk in the Infusion waiting and make our own decision to go. Our schedule sheet has lab and shots all the way up to July 31. Right into another holiday.

Hmmmmmm..... that may be the very reason we haven't seen our other group. They were probably told we were trouble makers and should steer clear of us!!! ha.

We can't ride right now, except for a couple of hours. We can't do the same things we did before. I did get to talk to Sissy (remember my friend that had the kidney/pancreas transplant in 2000). We spoke for over an hour. She reads the blog each day and that helps her feel less guilty when she doesn't have time to call. She gets to read about it.

I have a 40 yr reunion coming up in two weeks. I have passed the deadline to send in my money, but I know they would let me pay at the door. I just hate to take the chance without knowing if Chemo Sabe cannot go with me.

Well, Kids, I feel my eyes getting droopy and my mind is dissipating. It is off to work tomorrow and see how strong Chemo Sabe may be. Our appointments in the afternoon are so much better than the early mornings. We are so much more fortunate than Rog and Ruthie; and Billy and Sherry, in that we can come back to our own home and crash. Of course, we have the house work, yard work, laundry, grocery shopping and regular stuff as a regular household. We get to see the kids all week and our pets. I guess we are the lucky ones out of our group.

Please pray for our friends this week. Billy was receiving blood as we left today. Roger is still on his bag. Chemo Sabe will be getting the growth factor this week. We all want to go out to dinner, but we gotta wait on the guys to see if they will be dissipated.

It was nice to see everyone. We are praying for you all.

Love and good night --- Pepper

Emollient -- Word for the Day -- Friday, July 11, 2008

Emollient
DEFINITION: (noun) something that softens or soothes.

RED ALERT! RED ALERT! You are hearing it from the prime source of Chemo Sabe. He was driving down the highway today, looked in the mirror at the chrome dome and noticed some streaks on his head. HAIR, could it be? NO... peeling skin from a slight sunburn. Must not have put enough emollient on it last week when it rained on us. That just proves you CAN get too much rays on a cloudy day. And, it just proves what I have said since we shaved his head... He DOES spend just as much time looking in the mirror as he did with his hair! ha (If you don't hear from me anymore you will know he killed me for letting you know this about him.)

Had a busy, busy day. Not much sleep for me last night because of massive snoring. Last chemo treatments he was as quiet as a mouse. This time I can't even arouse him to get him to reposition himself to curtail the snoring. It doesn't even sound like normal snoring. Much more like a boar hog. I had such a headache during the night because of it and then the kids started yelping in the sunroom at 4:00 a.m. Got them out to do their thing. During that process there was a whole lot of barking going on. I stepped out onto the big deck (we have four) and listened. I heard two big owls hooting at each other. Sounded like one was on the back fence and the other about a block away. Guess these big bad kids turned out to be frady cats.

Chemo Sabe volunteered then to go downstairs and sleep in the recliner, but that is not an option with the bag on. He could crimp one of his tubes and the alarm would sound. As hard as he was sleeping he would not have heard it. It won't be an option in the next few weeks either because his WBC will be falling and could possibly run fever. He will be more prone to infection.

His WBC is 8.07 (3-12 is range) as of yesterday. His platelets are steady at 83 (150-500 is range). We don't begin to worry, if you remember (there I said it again) until WBC is below 2.0 ad platelets below 20. When the WBC falls that low then he will be ready for the stem cell transplant.

He spoke with his infusion nurse today and she explained to him when his WBC does fall then he will go in for an enormous dose of chemo. This chemo will kill EVERYTHING in his body. Lesions, bone marrow, EVERYTHING. Then the next day he will get the transplant of all the new babies (about 5 million). There will be nothing old in his body. These babies will be happy and make more babies. And, I thought we would never have children together! ha

Still having massive hiccups this evening. We have discovered it is when he is up and moving around. His nurse also told him today that the hiccups meds are actually a muscle relaxer for the throat. Glad he only takes them at night. Can't have him driving around under the influence.

He has worked each day this week. He has been enormously tired when getting home. Still with flushed face, but he did not gain any weight since yesterday. He ran right upstairs and laid down on the bed while I fixed dinner. Said he was tired, BUT, our satellite is out downstairs and awaiting repair tomorrow. I think there was a method to his madness. So, we ate in bed this evening.

I stayed in bed late this morning hoping to catch a bit of sleep to ease my headache. Could not do it so got up (Fridays are my days 0ff) and did a little instant messaging with the son. Got in the shower and heard a door slam. Did not hear the dogs barking, but I still thought it might be the our neighbot. Then I heard someone coming up the stairs. I usually don't set the alarm when I am in the house during the day. I surely didn't have a weapon in the shower except maybe a scrub brush and my razor. For some dumb blond reason (well, I use to be blond before white), I picked up the bar of soap. Then I heard Chemo Sabe call out to me before he entered the bathroom. He came home to pick something up... Please don't ask me what I could have done with the soap, but I could have probably thrown it pretty hard.

Well, it is early, but I believe I will close. We are getting the bag disconnected tomorrow. I know he is looking forward to it.

I will try to do better in my posting over the weekend so you guys won't get upset. But, like I said -- if I don't, it is probably because he killed me over the first paragraph! ha

That head is very shiny with the emollient he keeps on it. He doesn't plan to let any of it grow back.

Love -- and Good night -- Pepper

WBC - White Blood Cells -- Word for the Day -- Thursday, July 11, 2008

White Blood Cells

DEFINITION: White blood cells (WBC), or leukocytes, are cells of the immune system defending the body against both infectious disease and foreign materials. Several different and diverse types of leukocytes exist, but they are all produced and derived from a multipotent cell in the bone marrow known as a hematopoietic stem cell. Leukocytes are found throughout the body, including the blood and lymphatic system.[1]

Okay, Kids.... I warned you that at some point in time you would have a pop quiz. Well, there was one tonight that just FELL into my lap. As Chemo Sabe was bragging on his lab results this evening, a 'CLOSE' family member, that reads the blog every day, asked what WBC meant..... Without mentioning any names, I will just tell you we know her as "Ringer". Another test for you... if you read back far enough you will know who Ringer is!!! ha

Chemo Sabe is about to run out of gas. He has worked each day this week and I believe today was just too much. We had company for dinner, the kids (another hint for you... hee hee) and before they arrived he had to lie down. He has had a headache since yesterday, but he never complains and you would never realize it by his actions. He asked the nurse today about Tylenol and we always get STRICT instructions not to take anything other than what they prescribe, but they did tell him he could take two. We just have to tell them tomorrow that he did, in fact, take something.

He ate a very good supper. I fixed meat loaf, fried green tomatoes, beans, fried zucchini, new potatoes and a relish tray. Thank goodness the son forgot to bring dessert. We had no left overs.

Chemo Sabe has gained six pounds since yesterday. He had gained three from Tuesday to Wednesday. He did not collect that much fluid on the last chemo, but he did when he started the growth factor shots. His face is flushed and puffy. He admits he needs to drink plenty more water so he can run the fluid through. I can see the tiredness in his eyes today, but not in his smile.

His WBC is at 6.59 and his platelets are still 85 with CRP still being a <5. These are all good figures, if you remember? Never know when I will run into any of you and ask those questions. HA. I promise I won't spring the big words on you like -- hematopoietic.

He wants to ride this weekend, but I just don't see it. I believe he will dropping by Saturday. I am hoping for the best, but I think next week will be a low, too. Will just have to wait and see. He was a little light headed this morning when he got up so I see that also getting worse the next couple of days. That is the Thalidomide from the night before and I am certain that is why he had a headache. This is the start of having to check him throughout the night to make certain he isn't running a temperature.

His mom did get out of the hospital today, but she too has a port for antibiotics daily. She is feeling very poorly. Please remember her in your prayers.

Chemo Sabe has spoken with Billy and Sherry, our Alabama friends and he had his bag disconnected on Tuesday. He, like Chemo Sabe, feels a lot better on this round that before. If you remember, (gosh, I said that a lot), he was the one that had massive pain and swelling throughout his growth factor shots, but collected his limit in two days. He, too, is liking his bald head.

Well, I am calling it a night since I have given you another repeat lesson on WBC. But, refresher courses are good for everyone.

Good night -- and Love --- Pepper

Hiccups -- Word for the Day -- Wednesday, July 9, 2008

Hiccups

Definition: a spasmodic inhalation with closure of the glottis accompanied by a peculiar sound.

Here we are -- ready for bed. It is 10:30 p.m. and Chemo Sabe has developed the hiccups again from the chemo. He had them massively with the first round of chemo, if you recall. We got a prescription then and we still have it. He has had them about an hour and can't even talk without bellowing out a loud 'peculiar sound'. Funny? Yes. But annoying to him as they are uncontrollable.

We had a great evening with friend and co-worker from Chemo Sabe's work. She is the VP we have bragged about that is always available when he needs her. Ms. T..... Slim, beautiful woman with a great personality. Oh..... in September she will be 50... Everyone is invited to her party in New Jersey!!! We'll keep you posted! ha

Had good lab results today with a chemo bag change. Had to have a skin prick vein test for another lab function, too. That will be done once a week. Started the steroids yesterday so the energy levels have kicked into high with flushing in the face. Still working on his computer this late at night. He had his dose of about 15 pills this evening with four of them being Thalidomide. That is a chemo in pill form that will make his drowsy. He slept every well last night. So good I finally went to the couch downstairs around 4:00 a.m. because of snoring. One thing about his cancer and meds, I have not heard him snore in months until last night.

Dexamethezone (10 pills a day -- steroids) to get him up and running and Thalidomide to put him down at night.

Drove himself to work this morning and also to UAMS alone. Kept me posted during his bag change and then afterward. Got a schedule for his bag disconnect on Friday with his daily labs for the next two weeks. His growth factor shots will not begin until his WBC drops to 1.5. He is at 3.85 now so that means we have about a week to 1-1/2 weeks before he drops quickly. Below one will be when the stem cell transplant begins. Probably in two weeks.

If I am repeating myself it is so we will be reminded of the process and also be reminded that the process changes slightly, occasionally.

Hiccups -- slowing down some, but the steroids are still hanging in. I can't keep up with him. I am thinking if I just leave the 'computer' room he will not want to be in here alone and mosey on into the bedroom.

With that -- I again thank the Lord for a good day.

Please remember Chemo Sabe's mom that is still in the hospital. He was informed this afternoon she has a blood disorder related to ecoli. That is why the urinary tract infection began.

My mom received a good report on her follow-up visit regarding her cataract surgery. No pressure in the eyes and she has been released to see her regular eye doctor in three weeks.

Thank you again, Ms. T, for a wonderful evening away from stress and to you, our son, for coming by and letting the dogs out so we could get away a couple of hours, and the rest of you for your continued prayers.

Love -- Pepper

Curtail -- Word for the Day -- Tuesday, July 8, 2008

Curtail
DEFINITION: (verb) to shorten.

Okay, Kids... Curtail your complaints. I know I haven't written since the end of last week, but, Hey... had honey-dos to do. I have heard through the grapevine of several of you wanting to catch up on Chemo Sabe and there wasn't any new news. Well, here we go...

We had a long, deserved weekend. We did get to ride on Saturday with 30 min. of that being in the rain. It had chased us all day. We got out in the Tahoe on Friday to do some necessary shopping and it poured on us -- IN THE TAHOE. My sunroof is leaking again. Chemo Sabe used at least a half box of Kleenex to stop it, but it came on through to the front and collected in the rear air controls. There we have God's sense of humor again.

We had the Cook port inserted yesterday. Remember that is the spaghetti sized insert with the three tubes for collecting labs, doing transfusions, platelets and the chemo. It was a little painful because a new kid on the block was learning. Got four deadening shots. No step for a stepper.

Had a little confusion today on our schedule. We were told last week that our 9:00 a.m. Big Dog appt was not necessary. Only the chemo bag hook up at 3:00 p.m. Chemo Sabe got a call from a nurse asking if he had been in an accident. He was certainly confused. She informed him he missed the 9:00 a.m. appt. So we both took off work early (1:30) and met at the Myeloma Center. Got the MRI results. Curtail your excitement. This is where, if you remember from last week, we felt we were too excited about the Remission results. See next paragraph.

The lesions that appeared in the beginning are still visible. The exact word used throughout the report was "unchanged". That should have been the Word for the Day, actually. BUT, unchanged is not bad, because there are not any more reported. There is mention of three on the area of the right and left rib cage on the 3rd and 4rd ribs. Don't tickle yourself as you count down your own. They should be right under your breast area.

There are still some lesions along the spine with a small fracture still being reported, but as before, no mention of a cement repair surgery, as yet. The left hip has some indication of lesions, but the right hip that supports the prosthesis shows no signs of lesions.

So, you see, no changes are good. His weight is staying normal. I can't tell you that as he is watching me write this. His blood pressure is excellent since is usually is a low recorder. He is now normal.

We were incorrectly informed of labs today, also. We didn't know anything about them so the chemo bag could not be hooked up until we received the labs back.

WBC -- 3.83 on Thursday and 3.73 today
Platelets -- 111 on Thursday and 85 today
Crap -- staying way below the normal level meaning no sign of infection.

We have been blessed. We received the Thalidomide today. If you remember, some of our chemo friends had a deductible of $860.00 and $650.00. Ours was charged to clinic last time because of insurance matters. We haven't gotten that bill, yet. This is the drug we were informed is $1,000.00 a pop. Well, picked up the second set today with check book in hand. I will have to admit this morning I transferred big bucks out of our savings account so I wouldn't write a hot check! ha... Well, our deductible was a whooping ------ are you ready??????

$50.00

As I mentioned, we are truly blessed.

Started on the steroids this morning again, along with four other prescriptions. We take ten each of the steroids for four days. He will be King Kong by week's end. He takes about the same amount at night to put him down of the Thalidomide.

Things have been up and down in the families this week. My mom is getting over her cataract surgery. She is having pressure problems and had gone back for follow up visits twice. They increased the meds she inserts into her eye, but she did tell Chemo Sabe she could see his bald head through the phone.

His mom is currently in the hospital with some urinary tract infection issues, Please pray for her strength in health and strength in personal decisions she needs to make.

All is well here at the home front. Had two sick pups yesterday, but they ate some good ole steak bones we brought home last night. So they seem fine today.

We will be working the rest of the week. We got hooked up with a 3:00 bag change out so that schedule will make it a lot easier for us to make our commitments at work. The bag comes off on Saturday.

Oh, Oh, Oh..... we also heard today after this chem is finished and the labs and the growth factor shots, there is a possibility of a two to three week break before the transplant. Gosh, won't we be wild and crazy before he has to go back. Think we could go AWOL?

Please try to curtail your complaints. Be patient or I may go AWOL myself. ha
Love you all...... Pepper

Elusive -- Word for the Day -- Wednesday, July 2, 2008

Elusive
DEFINITION: (adjective) hard to capture, grasp, or understand.

Remission has been elusive for us this week. Everything seems to be in a haze. Were we dreaming of the MM? Are we dreaming of the remission now? We seem to be in a daze, just as we were when we heard the news of the cancer. Is it because it was caught at such an early stage that makes it so soon to cure?

Labs were done this morning and tonight at 7:30 the MRI will be done. This will tell us of the 27 lesions along his spine, hip and neck area. We have our hopes up that this too will give us news of the lesions disappearing. We will know the 'rest of the story' on Tuesday at the 9:00 a.m. meeting with the Big Dog.

We have an 8:00 on Monday a.m. to have another port put back in. Chemo Sabe wants it in another place, but the options are few. Under the arm or in the left juggler vein. The Big Dog even laughed and said if he wanted it in his forehead area he could probably make it happen.

It has been a busy week thus far. Chemo Sabe and I have been working. Doesn't seem quite the same working full days instead of trying to cram everything into a couple of hours and dotting all the i's and crossing all the t's.

I have not really seen Chemo Sabe since Thursday, June 26 when we had the bone marrow biopsy. I have been spending last weekend and this week with Poppy. More energy, better appetite and better resting. Doing a few more things around the house and riding the 'beast'. He laughed last night when helping me carry new cushions in for our patio chairs. Claims he can only carry up to two pounds. He flinched when I got the big stick out. It works every time.

Riding Monday evening to meet Stretch and Rainman, we enjoyed the cool night air on the way back. Just like old times. We are ready to buckle down and begin the process again.

The dome has many freckles now and there is talk of not letting the new hair grow back, but keeping the Kojak look. He has been wearing his security ID badge so when he goes to job sites he can show them his photo with hair so they will recognize him. What a chuckle he gets from doing this.

We are meeting at the house this afternoon and taking the bikes to the hospital. We hear of rain for the weekend so we want to get as much riding in as possible. When we ride we eat out. I will soon have to get another new seat --- a bigger and wider one to carry this trunk!

God is good...ALL the time! ALL the time, God is good!

Your prayers are working continuously.

Love -- Pepper