Obtrusive - Word for the Day -- Wednesday, January 28, 2009

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.

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

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