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.