Chemo Sabe

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Benton, AR, United States
Diagnosed with Multiple Myeloma-- May 2008

Tuesday, March 30, 2010

Popinjay - Word for the Day -- Tuesday, March 30, 2010

Popinjay

Definition: A vain and talkative person.

It is hard to imagine listening to a vain and talkative person, but I usually experience that once a day, beginning when I look at myself in the mirror each morning! :)

With this the end of another series of being off Dex and Velcade for two weeks, I see the mood changes. I know they are coming. I am experienced with handling them, but somehow, someway I forget until they are right upon me. It can be just the smallest of things. You are probably asking if it jumps upon me so fast that I snap back... Of course, I do. I believe then ChemoSabe realizes that it has jumped his bones, too. All is well.

My good neighbors are out of town this week and I am picking up their papers and mail. I find myself wishing it were hot weather so I could go over in the afternoons and swim. It is a good sized pool that the first neighbors used it to each scuba diving. I have the opportunity to use it as much as I want this summer, but I gotta work on these hypo thighs.

I took the survey and ordered up a new batch of Revlimid yesterday. You know, the survey where you have to swear you haven't had sex with a woman that can get pregnant and such. What is sex?

If you procrastinate on your income tax preparation as I, then you know and can relate that I have not begun the process. I look forward to the end result, but not the process in motion. Our appointment is April 10.

All is well with the family. Little brother comes weekly to the office to get his stomach shots. Older brother made it back to Ft. Smith after two weeks of being away from home for training in Kansas City. Son has been painting all the walls in his house. He is doing a pretty darn good job, too. I know because he sends me pictures on my cell phone.

ChemoSabe still goes full throttle. Even the last two weeks of being off the hype meds he continues to get up at 2:30 or 3:00 each morning. He does the dishes and does a few odd jobs. He is very tired and takes a nap every time he sits for five minutes, but that does not stop him.

Had our phones fixed on Monday... We have had such a roaring in the lines for about two years, but AT&T indicated it was because we had an alarm system. They wouldn't even come out to look at it. When our power went out a couple of weeks ago due to the storm, our phones didn't roar then. It was so bad we would tell people to call us on our cell phone.

Well, Sunday the phones quit working, but the roaring was still there. On Monday before I left for work I checked and no roaring, no dial tone, no service. So, I called at 9:00 a.m. to place a service ticket. Everything is automated now so I expected nothing. Around 10:00 a.m. I had a service tech calling me to advise he was at our house and didn't want to go into the fence because of Maxie. As I explained the procedure with her, he said he wasn't worried about her biting, he was worried she would get out... Wasn't that thoughtful?

When I got home there was a cable across the driveway, across the front yard and around through the gate to the side of the house. Phones were repaired and the roaring was gone. The connection was crystal clear. Great -- you think?

I received a call on my cell phone yesterday.. Another automated attendant, advising the repair order had been complete. So, I'm thinking...I could leave the dogs out the rest of the week. I got home and the cable is still on top of the driveway and yard. I kept the number to the guy that called me, so I called him. No answer. I fumed. I called again this morning. No answer. I fumed more, but in the back of my mind I was planning on getting Son to come over.

Well, the service tech did call me back on my way to work. They will be digging the trench and laying the cable after they dig a big hole in the yard to remove the old phone box and cable. Whew.. Made my day..

Well, enough about me doing my popinjay thing.

Have a wonderful and safe Easter -- Let's remember the reason we will be praying.

Good day and Love -- Pepper

Wednesday, March 17, 2010

Glower -- Word for the Day -- Friday, March 19, 2010

Glower

Definition: to look or stare with sullen annoyance or anger

Glower -- Oh, my... Can I tel you A LOT about this word this week.

Okay.... Now to ChemoSabe... Labs are doing well the last two weeks. Yesterday he was sent home with a prescription for phorphorus and with a list of foods that has that in them. We do all the foods and for the most part, every day.

Dex is in the second week. He got home at 5:00 p.m. yesterday so we had a quick meal and he went to Big E's ball practice. He got home around 9:00 and we went to bed at 10:00. After he watched the news he informed me he needed up at 2:00 a.m. I didn't have to worry about setting the clock. He was up at 12:30 and gone by 2:30 a.m. He was in Shreveport by 7:30... It is now 8:30 p.m. and he isn't home yet. Glower Hmmm.... I think I like this new word.

Rog and Ruthie were in last week and he got a good report, but he will be having eye surgery on both eyes. They will be back next month. His Dex was cut down because he couldn't sleep. Is that an option for us?

Our girl scout cookie order came last week. I couldn't find my check book as I hid it when we went out of town, so I asked the young lady if she could come back the next day. We haven't seen or heard anything. So, after much whining, I fixed two dozen chocolate oat cookies Monday night. I think we have about four left. He took a couple to work and then whined because Tonto ate two. So, you can see where our massive weight gain is coming from. When I look in the mirror at myself, I glower. If I were on Dex I would have an excuse.

Now, to one of our kids, Woody... ChemoSabe doesn't get to interact with him much since the MM thingy came along. He use to shower, shave and drink coffee with ChemoSabe every morning. Now ChemoSabe may pick him up about once every two weeks. Hence, momma comes along. I feed him, clean him, clean his cage and talk to him. As I was lying on the couch Sunday reading the paper under the blanket he crawled under on my stomach. He began pecking rapidly and continuously on my two middle fingernails and bobbing his head up and down... It really felt unusual. I took my hand out and he had regurgitated on each nail perfectly. Wasn't dripping, running or anything.

I put him back in his cage and told ChemoSabe of my thoughts. It is Spring and he is trying to feed me. I looked on the internet under Sun Conure regurgitation and sure enough, it is a sign of "Love". He usually drinks coffee out of my mouth and he had tried to put his beak in my mouth then, but luckily I didn't let him. Poor guy. He needs some lovin.

My older brother came last week to spend the night and a tornado came through. I cleaned out the storm closet and the lights went out. He laughed that I was so cautious, but I think he was ready to get in it, too. ChemoSabe followed the storms back from Shreveport. Thirty homes about six miles from us were destroyed.

My little brother is doing tremendously well. He is looking for property to buy so he can move. It is just too painful for him every day to look around and see Sharon everywhere. He comes faithfully to my office every week for his shot. We share stories and laugh a lot. We have delveoped a very close relationship. I don't know how it could have gotten closer, but it has. I admire the way and the things he does being disabled.

Well, Kids... my grass is waiting for the first cut of the year. It is my day off and I hear the weed eater, leaf blower and mower calling my name. Actually, they are glowering and screaming.

Just got an email from our Alabama friends, Keith/Diane. They were in this week for a check up and they are on their way home.

Please remember and pray for a young lady and her husband in Georgia. She works with ChemoSabe. Her husband, Paul, had some sort of aneurism or mini stroke this week. They are young parents. They are awaiting an appointment for an MRI. He had some paralysis in his face and difficulty with speech. Without saying, they are very concerned. Didn't get much help from the ER doctors.

Have a beautiful, blessed day.

Good Day and Love -- Pepper

p.s. have finished the yard... Gettin my bike ready and we are going to ride and then eat.... If you REALLY want your neighbors to stop by and say, "Howdy"... mow your yard without your partial in your mouth... It will attract them every time.. Just remember not to laugh, because then they get this, "OMG, she doesn't have teeth" look in their eyes... Big E wants me to teach him how to brush his teeth like I do.... Have a great weekend!!!

Friday, March 12, 2010

Multiple Myeloma Cancer -- Words for the Day -- Friday, March 12, 2010

It is my day off and I am contemplating mowing the yards. I don't have enough energy (lazy today) to do the weedeating and blowing before, but I can't very well mow without weedeating and trimming the edges and curbs.

I could stay in and clean house, but today I think a feeling of thorough cleaning would be rearrangement of furniture. Just like the weedeating, I would have to then vacuum, dust and clean the bathrooms (totally). Hence, LAZY. For those of you that don't know ---- ALL of our vehicle tags have 'lazy' on them...

So, my analogy to this story is that I am thankful God put me on this earth to enjoy the things I can, when I can and want I can.

I found the below article this week when I was searching for various systems of ChemoSabe's disease. The word disease this week, for some reason, puts a bitter taste in my mouth. I think it was because we saw Rog and Ruthie. Two wonderful people going through this disease just as we are.

Rog was talking about his numbness around his mouth, hands and fingers. As you know, ChemoSabe has had the foot numbness from the beginning. We were told it was a side effect from Thalidomide. So, he was put on Revlidmid. These are both a chemo pill by mouth once a day, at night. We also hear he will be on it forever. Along with the Acylovir which is a anti-bacterial.

Anyway, Rog indicated his numbness is from the MM. So, back to my original story, I was searching to see if and how much numbness was a side effect of MM. Rog doesn't take the meds ChemoSabe does to lessen some of the symptoms. ChemoSabe is taking Gabapentine for the numbness and it is 80% better. He hasn't fallen in over a year..

We have met so many individuals through this disease and it has made us stronger. Stronger in compassion, giving, honesty, communication, desires, pleasures and so many other areas of our lives. We have grown.

I wish I had found this article earlier in the process. It explains it better than the information I gave you in the beginning. Doesn't use those big words I have grown so accustom to explaining in the past two years.

The Second Annual ChamoSabe Surprise Survivor party will be soon approaching. I will be sending out my invitations to those that have helped us with our journey. Those that have watched the moods, the magpie talking, the sudden burst of blood pressure and the tears. Helping us around the house. Doing things for us you were never asked to do.

Well, I'm getting mushy. Gotta go do whatever I want to do today..

Good Afternoon and Love, Pepper =================== Now to the Multiple Myeloma definition.


OH -- AND, before I go. If I stay in and clean house it would also entail me moving my plants out for the fresh air. They are HUGE... (lazy)


Multiple Myeloma Cancer

Understanding Multiple Myeloma Cancer

The first step in multiple myeloma cancer treatment is understanding your cancer. At Cancer Treatment Centers of America (CTCA) we work to inform you about your cancer, and all the options available for multiple myeloma cancer diagnosis and treatment. When you're well-equipped with information, you have the ability to make the best choices for your treatment and care. We also understand that you may be overwhelmed by the "information overload" created by many sources of multiple myeloma cancer information. At CTCA, we help you sort out this overload so you have a clear understand of your multiple myeloma cancer and your treatment options.
To learn more about our treatment options, call us at 800-392-3455and speak with one of our Oncology Information Specialists. They will help you to understand your treatment options and determine if CTCA is the right place for you. You can also chat online about multiple myeloma cancer with our specialists anytime of the day.
What is Multiple Myeloma Cancer?
Multiple myeloma is a cancer of the blood that begins in the plasma cells, which function as part of the body's immune system. Plasma cells, which are found mostly in bone marrow, make proteins called antibodies that attack invading organisms and fight infection. Cancerous plasma cells collect in the bone marrow and in the hard outer part of bones. In most cases of multiple myeloma cancer, the cells collect in many bones, causing multiple tumors and other problems.
A cancerous plasma cell is referred to as a myeloma cell. This is an important distinction, as it differentiates multiple myeloma cancer from bone cancer, which is a cancer of the bone cells. Bone cancer diagnostic techniques differ from those for multiple myeloma cancer, and bone cancer treatment differs from multiple myeloma cancer treatment as well.
There are 13,500 new cases of multiple myeloma cancer diagnosed each year; it accounts for 20% of all new blood cancers, and 1% of new cancers overall. Multiple myeloma cancer occurs in men more often than women, and the risk increases with age--only 1% of people diagnosed with multiple myeloma cancer are under age 40, and half of the people diagnosed are over age 71. Being overweight also increases a person's risk of developing multiple myeloma cancer.
Other risk factors for developing multiple myeloma cancer include heavy exposure to atomic radiation, petroleum products (workers in some oil-related industries may be at higher risk than the general population), certain pesticides and solvents, heavy metals, and certain airborne particles.
Multiple Myeloma Symptoms
Multiple myeloma symptoms include the following:
• Unusual bone pain and fragility
• Anemia, which is a low red blood cell count often resulting in a general feeling of weakness.
• Low white blood cell count, which leads to a reduced resistance to infections, such as pneumonia.
• A low platelet count--platelets are the blood cells responsible for clotting, so a low platelet count often results in unusually heavy bleeding from generally minor scrapes and cuts.
• Nervous system symptoms--bones in the spine can be weakened, and may even collapse, causing increased pressure on nerves that results in severe pain, numbness, and/or muscle weakness; in addition, if the blood absorbs too much calcium from bones damaged by multiple myeloma cancer, weakness and confusion could result, as calcium levels impact nerve cell function.
• Kidney symptoms--increased myeloma protein or calcium in the blood can harm the kidneys, which makes it more difficult for the body to process waste products and fluid.
• High blood calcium can result in a feeling of being extremely thirsty, a loss of appetite, constipation, and feeling sleepy.
It's important to remember that these multiple symptoms could indicate a condition other than multiple myeloma cancer. If you experience these multiple myeloma symptoms, please visit your health care professional for an accurate diagnosis.
Multiple Myeloma Cancer Treatment
If you or a loved one has been diagnosed with multiple myeloma cancer, Cancer Treatment Centers of America offers a comprehensive set of powerful tools and therapies. Your CTCA team will work with you to develop an individualized multiple myeloma cancer treatment plan suited for your particular needs. Your multiple myeloma cancer treatment plan can include conventional treatments, leading-edge procedures, and a blend of alternative, complementary treatment methods designed to address the needs of your body, mind, and spirit.
Your individualized multiple myeloma cancer treatment program can include the following methods:
• Radiation therapy - This is one of the three traditional forms of multiple myeloma cancer treatment. Radiation therapy techniques include External Beam Radiation Therapy, which uses a high-energy x-ray machine to direct radiation to a tumor, and TomoTherapy Highly Integrated Radiotherapy (HI-ART), an innovative new technique which focuses radiation directly on your multiple myeloma cancer tumor, sparing surrounding healthy tissue.
• Chemotherapy - A multiple myeloma cancer treatment method that uses drugs to destroy cancer cells by impeding their growth and reproduction. Innovative chemotherapy options include Fractionated Dose Chemotherapy, which breaks the total dose of your chemotherapy into smaller amounts, administered over 3-5 days, which can make your treatment more tolerable and reduce side effects.
• Stem Cell Transplantation - A surgical procedure that replaces your bone marrow and immune system with new, healthy bone marrow or blood stem cells that have either been harvested from you (Autologous Stem Cell Transplantation) or a suitable donor (Allogenic Stem Cell Transplantation).
• Biotherapy/Immunotherapy - A multiple myeloma cancer treatment method that uses your body's natural line of defenses.

Wednesday, March 10, 2010

Phantasmagoria -- Word for the Day -- Wednesday, March 10, 2010

Phantasmagoria\fan-taz-muh-GOR-ee-uh\ , noun

Definition: A shifting series or succession of things seen or imagined, as in a dream. Any constantly changing scene.

Isn't that just a long word for "Life"? Constantly changing, a shifting series?

Labs were very good yesterday after holding off for two weeks. Some levels were extremely higher than on the last trip. High is a good sense. Last labs for Platelets were 54 and yesterday they were 100. Reminded when we were looking for very, very high platelets so ChemoSabe could have his stem cell transplant and then the other occasions were looking to get the chest port pulled after being on a chemo bag of two cocktails for four days. Ahhhh....those were the days.

WBC was a bit too low for me this time. I would like to see that at least two degrees higher. CRP was at 6.5 with the last figure at 5.6.

Rog and Ruthie met us for dinner last night. His testing began at 7:30 this morning with an MRI, PET scan and bone marrow biopsy. They are looking to go back home on Saturday. They both look GREAT. They look relaxed.

I think we are all on the downside of this MM thing now. We have settled into the saddle of realization this is a lifetime deal. We can't get out. So we have looked back, sized up the situation, accepted it and are now enjoying life again. God is in control.

The only medical deal he has right now is chiggers... Do not know where he contracted them as we didn't sit on the ground anywhere or anytime while we were out of town, but he has a good case of them, below the belt. :)

Preacher and wife (ex boss) met us for dinner also. He left here two weeks ago and seems to be settling in at the new church. We were at Bone Fish for 2-1/2 hours last evening. The meal was fabulous and then we topped it off with creme brulee...

Yesterday was the first day for Dex this week through Friday and then another four days next Tuesday. They have already kicked in. We were in bed at 10:30 and he was up at midnight. He originally wanted up at 2:30 a.m. to be in Shreveport by 7:00. He did a lot of computer work and then was on his way out the door. This was phantasmagoria in the works.

We have an overnight guest tonight so ChemoSabe will probably sit and talk like a magpie. He kept interrupting my recorded soap last night. I would just pause, listen and he would realize he was talking too much. I pushed 'play' and get settled and here he came again. I just look at him and smile and slightly roll my eyes. As you know, he is not a real big talker, but the dex brings it out of him.

Our little zebras are breeding. I have found two broken eggs in the bottom of the cage. I have read if you didn't want them breeding to take the hutch out. I took it out last year after her last clutch was nine. You know me though.... I hate to see those little things dropping and exploding in the bottom on the wire. So, I fixed up a shoe box and put some yard, cotton balls in the bottom of the cage. ChemoSabe gave me a plant for Valentine's Day with the fake grass in it, so I took some of it out and spread around in the cage. I bet I have three eggs by the time I get home today.

We now have the original parents and one child. The child is a male from the very first clutch of eight eggs. None survived from the second clutch. The daddy picks on him, but they don't seem violent, so maybe the boy can have his own girl now. I guess this breeding means Spring is truly around the corner. Another example of phantasmagoria.

I found some marble, ceramic turtles when we went to Eureka in a little rock and crystal shop on the main drag. These turtles fascinated me so I bought a few for souvenirs. Two were babies hatching out of the shell. We gave one to the motel owners and told them to us it meant a hatching of a new friendship since they gave us the winter rate and let us have full access to the motel. She is a Korean and she said a turtle gift meant a sign a prospering business. So, we did good on that one.

ChemoSabe took one to Tonto (his admin asst). And, I let Big E have his pick of the little ones that he called babies. The bodies were marble and the legs and head was green ceramic, almost like jade.

ChemoSabe accidentally jerked the sack with about six turtles in it out of the saddlebag. When we unpacked we discovered he had broken the poor leg off one of the hatchings. I glued it back and it is as good as new.

Big E called last night and told me he dropped Derek (his turtle's name) and broke his leg. He was upset because the leg fell into some gravel and he could not find it. So, I offered one of mine to him. He had taken his to school. He is so precious.

I am going to close.

Have a good day and Love -- Pepper

Tuesday, March 9, 2010

Sachet -- Word for the Day -- Tuesday, March 9, 2010

Sachet

Definition: A small bag, case, or pad containing perfuming powder or the like, placed among handkerchiefs, etc., to impart a pleasant scent. Also, sachet powder, the powder contained in such a case.

My mother had another use for this word, Sachet and I was being smart allecky. When she would get upset with me she would tell me I was sacheting around... Being cocky.

I have had tons of 'complaints' that I have not been faithful in keeping you up-to-date on ChemoSabe. I have not written since February 1.. Well, I have no excuse except for everyday events. Work, washing, cooking, house work, babysitting, dogs, birds, riding and just plain ole being lazy.

The two week process began again today. Labs in the morning and Velcade in the afternoon on Tuesday and Friday. The last intervals were non-stop. On a three day cycle from the last steroids, he opted to go out of town on Wednesday and Thursday of that week. He began that stint by getting up at 2:30 a.m. on Wednesday and got home on Thursday evening at 9:00 p.m. During that whole time he got about four hours sleep. I just don't know how he does it.

We took advantage of this last round off and headed to Eureka Springs on Friday morning and came back in on Sunday evening. Yes, we rode the bikes. The weather was a bit nippy, but it was absolutely wonderful getting away (alone). We took our time and stopped when we wanted to and found some places up there we didn't know existed in all the 23 years we have been visiting.

We found a cafe that serves breakfast, lunch and dinner, but also has some couches, love seats and lounging areas for the coffee drinking, book reading types. It was underground, beneath Romancing the Stone. They have been there 15 years. We go in Romancing the Stone every trip... I can't believe we have missed it all these years.

There are a few business for sale and I imagined us retiring and going there to live on a summer business deal... I think we could make it. I do have to admit, though, I would miss Wal-Mart weekly trips, Penneys and just the ability to get out and do what we do in the 'big' city.

ChemoSabe has lost four pounds. I have gained 100! ha. I finally had to go out and buy bigger jeans. When you have at least 12 pair and only one fits...We have a problem. My neighbor and I have not been able to do our two mile walk because of the weather... Next my excuse will be it is too damn hot.

I had a difficult time during Valentine's Day. It was the first anniversary of my mother's death. I guess I will never look at that day in the same way again. But, it was kinda 'marked' for me anyway. I married Son's dad on Valentine's Day and our divorce was final that day, too (1968 and 1970). Short, but sweet. Well, maybe not sweet or we wouldn't be divorced.

I lost my boss on Feb. 25. I am the lone wolf in the office until about the end of April or first of May. I am loving it. I have gotten so much done. Things I have put off because my boss would interrupt me. He has gone to mend another church and I will hear from him at least every other day... After all, he has been my friend since 1997.

Back to ChemoSabe --- We are going out to dinner tonight with Ruthie and Rog from Okla. He is back for testing and treatment. I know we basically have the same schedules, but it seems like his testing is more frequent. It isn't, but it seems that way. We will also be having dinner to celebrate my 60th birthday from last week. I had asked for steak for my birthday, but ChemoSabe wanted to wait until we got back to L.R. so we wouldn't pick a bad place.

Well, Kids... I think I did a mighty fine job of sacheting around all the events since February. I have thought of some very funny stories to tell you along the way, but now I have forgotten. I will have to start jotting them down as I think of them. Just as a writer, I suppose, so I won't let my fans down in the future.

Oh, I do have one, but most of you have already heard it.

Posting a memory for you... Well, for me, but I'm sharing...

ChemoSabe continues to rise and shine at 3:00 to 4:00 a.m. A result of chemo and steroids. I usually awake to the coffee brewing at that time each morning.. Such a pleasant aroma. This morning my nostrils smelled a hint of something distasteful which was accompanied by a nerve racking noise. Hmmm.. something burning? I checked the fireplace last night. Well, it was burned toast and the fire alarm! I jumped up, grabbed my cell, ran to the top of the stairs to see him at the bottom swearing to me he didn't set the security alarm off. I called the alarm company and pointed the finger in his direction and explained he had burned the toast. When she asked if there were any other problems I told her only that it was 4:00 a.m. and my sleep was interrupted. :) I would almost be certain our neighbors weren't happy either. With that, I made him escort all four dogs out the door for a breath of fresh air.

All that and he is still my perfect man.

It seems when we set the alarm off once, then it happens at least 3-4 times in a row and then doesn't happen for months. Our alarm people just laugh..

So, there ya go... I will let you know soon how labs are going.

Good day and Love -- Pepper