Cluster Headaches -- Word for the Day -- Wednesday, September 15, 2010

Cluster headache

Definition:   Nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women.


Wanted to keep you updated from the last post.  I didn't want to keep you in suspense or worry you. 

After a visit on Monday with a neurologist, we were advised the headache could be the result of three things.  (1) the myeloma has returned; (2) an inflamed artery behind the eye; (3) cluster headaches.  A recommendation was made on a drug called Verapalmid.  It is a blood pressure reducing medication.  I was immediately against it as it does lower one's blood pressure.  ChemoSabe has a long history of low blood pressure.  An MRI was scheduled for October 7.  (that would seem they aren't too worried)...

We visited with our MM doctor yesterday and she has no concern that the MM has returned.  She also mentioned the Clusters because she has her own history of these. Although there is no known cause, she strongly believes they are from stress.  As she told us, "we have too many responsibilities"..  She even suggested we get rid of some of the dogs.  We was adamant about us spending a lot more alone time together.  Yes, we are alone a lot, but .... we tend to do house chores or work chores first.

She suggested swimming, spa, massage (ChemoSabe's brows raised) and acupuncture.  I reminded her we were instructed in the beginning he could not swim in pools, lakes or spas.  She told us he is safe to do that now.  So, I went home yesterday and raised the temp on the spa.  I have kept the chemicals maintained the last three years.   So, I stressed myself out getting it up and level again..  I felt a migraine coming.

She was concerned enough that she pushed the MRI up to this week.  She also ordered a FNA.  Raise your hand if you know what that is.... TEST!!!  She wants to see him again next Tuesday (09/21) to discuss the test results.  The neurologist told us we could not get in before the 7th...

The headaches are becoming more frequent (daily) and more severe.  I have bumped him up from Aleve to Hydrocodone.  Neither of which I prefer.  The doctor told us to back off the Aleve because of kidney damage in MM patients.  She suggested Tylenol. 

We thought the Dex or Revlidmid was a factor, but if I had been on my toes as a caregiver I would remember that a steroid fights antiflammatory and pain.  DUH!!!  I failed that test.  I bet you wouldn't

All-in-all, we have basically been enjoying life.  Went to a motorcycle rally in Hot Springs.  We have been enjoying the cooler weather.  Both our jobs still keep us quite busy.  He continues to travel the same.  As we shared our details of the doctor's visit yesterday I told him I felt he really wasn't getting enough sleep.  Sleep deprivation is something that really triggers my migraines.  I have been warding one off all week and I know it has to do with worrying about his condition.  It was a great relief for her to basically rule out a tumor.  But, I'm glad she is doing more tests.

So, there you have it --- Short and Sweet.  I will update you as soon as we hear something else.  Until then, pray for relief of his pain. 

Good afternoon and Love -- Pepper

Velcade -- Word for the Day -- Wednesday, August 25, 2010

Hello, ALL...  The definition we will be discussing today is two fold.  One -- being the caregiver and two -- the side effects of the chemo drug, Velcade.  We have discussed both in the past, but this can be your refresher course without the consequence of a test.  I think you will remember all these answers by personal experience with us -- the Patient (ChemoSabe) and the Caregiver (Pepper).

Life is good, but I am always looking behind.  Our health is good, but I am always looking behind. 

This evening we sat after dinner and talked about -- what else? -- our dogs.  Their current ages.  The ones we have lost and how long they have been gone.  The things each one does that reminds us of many of our past loves.  So many memories.  So many more to come. 

Weekly labs are still over the comfortable mark.  ChemoSabe has been doing very well.  He continues to push himself to the limits.  He has worked in the yard the past three weekends, even though the heat has been heavy.  He asks me to let him do what he wants.  I have never really tried to stop him.  I do check on him a lot and take him some of my bestest tea in the South.  More often water than tea. 

He has been experiencing some massive eyeball pain since this new maintenance began in June.  We laughed and said he was probably having withdrawals from his high dose of Dex.  Then they continued.  We then decided it was the twice a week trips in the heat and the glare of his windshield.  Not that, either, because he was having some on the weekends, too.

We ruled out stress because we both are great stress handlers.  So, we were running out of home remedies.  So, it was with strong suggestion that he discuss it with Infusion.  He made an appointment to see our eye doctor.  He went yesterday.

His prescription he has had for 1-1/2 years is too strong.  Therefore, it is strain from not being able to see.  New lenses on the way.  He showed Fish his med list and he was advised the steroids he has taking for so long has probably put him in the early stages of cataracts. 

Now, he is thinking "Kipper".  Kipper is our ten year old that has had cataracts for years and he is totally blind.  So, he thinks the same.  Not!! 

I was very, very worried.  I was silently thinking tumor behind the eye.  When he got home, after the dye and dilation, he really had a headache.  So much so he went to bed.  But, he wouldn't stay down.  Then we finally turned in.  He was up and down all night battling that thing.  He looks drained today and says he feels like he has a hangover, but he is leaving town in the morning at 2:30.

As I continue to say in my blogs -- "I just don't know how he does it"...

We are both riding on Friday for son's birthday.  We are planning to head out around 0700.  The mornings are cooler and the days are less humid so we all three are ready to get out.  It has been too long for us to ride with him.  We plan to be gone all day and eat a good breakfast and dinner on the road. We are so thankful for everything he does for us, without asking.

I am recuping from torn ligaments in my right hand.  Short story --  I want and sway my arms.  Two weeks ago walking down a hallway with my boss, my right thumb got caught on a door facing and bent backwards.  After taking myself to ER and being in massive pain for a few days, I am healing.  I have been in a splint.  I go in tomorrow to discuss surgery, but I don't see it.  I have improved 90 percent in the last few days.  "I raised a Marine -- I'm tough"...

So, without much more complaining and worrying and crying on your shoulder, below is the subject of the matter.  You can intake, partake, share or reveal any information you have with me, whether it be about ChemoSabe or someone else that relate to any of the side effects. 

(Don't tell -- but I'm still worried about the eye issue and I plan to do something about it).

My biggest concern is the RPLS listed below....  As I said.... I am always looking back...
========================================

Caregiver Information

Whether you are a spouse, child, parent, or other relative, a neighbor, or a friend—if you are helping someone with multiple myeloma or relapsed mantle cell lymphoma (MCL), you are a caregiver. Maybe you help this person make decisions about their treatment, maybe you lend a hand with everyday chores around the house, or maybe you provide emotional support. Whatever it is you do, it is no doubt very important to the person who is coping with cancer.

While you’re helping your loved one cope with multiple myeloma or relapsed MCL, you may be faced with your own set of challenges. This section discusses ways to help you handle those challenges.

Assistance for VELCADE® (bortezomib)

Multiple myeloma and relapsed mantle cell lymphoma often require complex treatment regimens, so it is important to understand how your insurance coverage works and how to pay for treatment. Millennium, the maker of VELCADE, wants to help. Call the VELCADE Reimbursement Assistance Program (VRAP) at 1-866-VELCADE (835-2233), option 2, a toll-free line, to talk with one of our counselors. VRAP is available from 9:00am to 7:00pm EST, Monday through Friday.
Learn more about the VELCADE Reimbursement Assistance Program.

NEXT: Emotional Support

Important Safety Information for VELCADE® (bortezomib)

What is VELCADE® (bortezomib) Used For?

VELCADE is approved for the treatment of patients with multiple myeloma (a cancer of the plasma cells). VELCADE is also approved for the treatment of patients with mantle cell lymphoma (a cancer of lymph nodes) who have already received other treatments.

Who Should Not Receive VELCADE?

Before you receive treatment with VELCADE, tell your doctor about all of your medical conditions. You should not receive VELCADE if you are:

allergic to bortezomib, boron or mannitol

pregnant or plan to become pregnant

breastfeeding. Discuss with your doctor when it is safe to restart breastfeeding after finishing your treatment.

The effects of VELCADE in children have not been evaluated.

How is VELCADE administered?

VELCADE is prescribed by a physician experienced in the use of medications to treat cancer. It is administered as an injection into your vein (IV) by a health care professional.

What are the Possible Side Effects of VELCADE?

VELCADE can cause serious side effects including:

Neutropenia (low levels of neutrophils, a type of white blood cell) and Thrombocytopenia (low levels of platelets). VELCADE can cause low levels of white blood cells (infection fighting cells) and/or platelets (clot-forming cells). You will have regular blood tests to check your cell counts during your treatment with VELCADE. If the number of these cells is very low, your doctor may change the dose and/or schedule of VELCADE. If your white blood cells become low, you can be at higher risk for infections. Tell your doctor if you develop a fever or believe you have an infection. If platelets become very low, there is an increased risk of bleeding. Your doctor may recommend a platelet transfusion. There have been cases of bleeding in the stomach, bowels and brain during treatment with VELCADE.

Gastrointestinal Problems. VELCADE treatment can cause nausea, vomiting, diarrhea, and constipation. If your symptoms are severe, your doctor may recommend IV fluids and/or medications.

Peripheral neuropathy. VELCADE can cause damage to the nerves, a condition called peripheral neuropathy. You may feel muscle weakness, tingling, burning, pain, and loss of feeling in your hands and feet, any of which can be severe. Tell your doctor if you notice any of these symptoms. Your doctor may change the dose and/or schedule of VELCADE or stop it altogether.

Low blood pressure. VELCADE can cause a drop in blood pressure. Tell your doctor if you have low blood pressure, feel dizzy or feel as though you might faint. If you are taking drugs that lower blood pressure, your medications might need to be adjusted. If you are not drinking enough liquids, your doctor may need to administer IV fluids.

Heart problems. VELCADE treatment can cause or worsen heart rhythm problems and heart failure. Your doctor may closely monitor you if you have, or are at risk for, heart disease. Tell your doctor if you experience chest pressure or pain, palpitations, swelling of your ankles or feet, or shortness of breath.

Lung Disorders. There have been reports of lung disorders in patients receiving VELCADE. Some of these events have been fatal. Tell your doctor if you experience any cough, shortness of breath, wheezing or difficulty breathing.

Liver disease. If you have liver problems, it can be harder for your body to get rid of VELCADE. VELCADE has caused sudden liver failure in patients who were taking many medications or had other serious medical conditions. Symptoms of liver problems include a yellow discoloration of the eyes and skin (jaundice) and changes in liver enzymes measured in blood tests. Your doctor will closely monitor you if you have liver disease. In patients with moderate or severe liver disease, VELCADE should be started at a lower dose. Additional dose adjustments may be made based on your tolerance of the drug.

Tumor Lysis Syndrome (TLS). TLS can occur with cancer treatments and your doctor will be monitoring blood and urine for any signs of this syndrome. If you develop TLS, your doctor will take appropriate steps to treat it.

Reversible Posterior Leukoencephalopathy Syndrome (RPLS). There have been reports of a rare, reversible condition involving the brain called RPLS in patients treated with VELCADE. Patients with RPLS can have seizures, high blood pressure, headaches, tiredness, confusion, blindness or other vision problems. VELCADE treatment should be stopped in cases of RPLS.

The most common side effects seen in patients receiving VELCADE include: thrombocytopenia, neutropenia, nausea, peripheral neuropathy, neuralgia (nerve pain), pyrexia (high temperature), diarrhea, anemia, leukopenia (low levels of white blood cells), decreased appetite, fatigue, constipation, vomiting, dehydration, dyspnea (difficulty breathing), cough, asthenia (low energy), insomnia (trouble sleeping), peripheral edema (swelling of the limbs), and headache.

What other information should you discuss with your doctor?

You should also tell your doctor if you:

have kidney disease. If you are on dialysis, your doctor will administer VELCADE after the dialysis procedure.

are taking medication for diabetes. VELCADE can affect your blood glucose levels. Your doctor may require close monitoring of your blood glucose levels and change the dose of your diabetes medicine while you are being treated with VELCADE.

have liver disease.

are using medicines like ketoconazole (an anti-fungal) and ritonavir (an anti-viral), which will require close monitoring during treatment with VELCADE.

are using any other medications (including over the counter drugs), herbal or dietary supplements, or holistic treatments.

develop a rash of any type while receiving VELCADE.

The side effects of VELCADE may impair your ability to drive or operate machinery.

Colloquy -- Word for the Day -- Thursday, August 5, 2010

Colloquy

Definition:  conversation, dialogue;  a high-level serious discussion : conference

First out of the gate -- Is it hot enough for you?   Don't answer that.

Labs have been tremendous the last month.  Platelets were down to 70 and he had a colloquy with Infusion he get a bag.  Can you believe it?  When this started he didn't have a clue what platelets were.  He didn't get any.  He certainly isn't low enough.  Maybe if he gets down below 50.

I have see a big increase in his bruising and thin skin.  The top of his left hand continuously stays black.  The bruises are so thin that they will bleed easily.  They are like a big blister with fluid in them.  If one is pierced the blood gushes.  He carries an inventory of band aids in his wallet.  These bruises are larger that half dollars.  The Infusion nurses tell him it is because his platelets are low.  Hence the last paragraph.  I have read up on the internet that could be a cause, but Velcade is a cause, also.

Our new addition to the family has been with us for two weeks.  She is adorable.  We have finally come up with the name -- Sugar.  She is pure white and as sweet as sugar.  She is very well mannered.  She is starved for attention and is very hyper right now.  She is a year old and I believe she is coming into season.  We are calling the vet.

At my last writing I had not mowed in two weeks.  Well, that ended up being three.  With the workers at the house and with the heat, I had just not gotten out.  BUT, last weekend, in the heat of the day, ChemoSabe and I wandered out into the straw like grass and began our task.  He mowed the front with the self propelled and I got in the big dog yard on the rider.  It was the first time he had mowed in about three to four years.  He worked up a good sweat.  Well, so did I.  It was like old times.  We really enjoyed it.

Tomorrow is our big day.  It will be our 23rd anniversary.  Just doesn't seem possible.  We had a rocky first year, but as you can tell, we worked it out.  Doesn't everyone have a bad first year?

My little friend in one of the guest houses that has Multiple Myeloma got to go home last weekend.  She had a rough time this last visit.  She came in for her second stem cell transplant and her counts just wouldn't come up very good.  Her WBC was down to .11.  I didn't get to see her or visit this time, but I did get to spend some time with her mom.  Do you remember what the major low zone is for the WBC?  Raise your hand.

Stan, another patient from same house, continues to experience problems with low platelets.  The doctors have instructed him to get plenty of rest.  He started on the Revlidmid and was back off onto the Thalidomide.  Coincidentally, Maggie and Stan live in the same city in Florida.

Our house is complete except for five small details.  I haven't moved everything back into place, yet, but I can see it coming together.  We still have a lot of items in our small living room, but not as bad as before.  We are loving the new tile and so are the kids.  It is a lot cooler on them.

ChemoSabe continues to travel each week.  Our gas charge cards are massive.  He spends on an average when he travels, $100.00/day on gas.  It is at $2.59 now in Benton.  Last Thursday I was lazy and didn't get gas at $2.38.  When I got out on Friday afternoon, it had risen to the $2.59.  That's what I get. 

Well, Kids... I just wanted to update you some.  It ain't much...but, better than nuthin..

Good afternoon and Love -- Pepper

Hope -- Word for the Day -- Wednesday, July 21, 2010

Hope

Definition:  to cherish a desire with anticipation;  trust;  to desire with expectation of obtainment; to expect with confidence

It has been a month since my last writing.  I am fond of the phrase "No news is good news". 

Weekly Monday visits to lab and Infusion Center has become routing for ChemoSabe.  He totes his folder packed with his lab reports and doctor's order around with him as if it were a part of him job.  The Infusion nurses treat him like the business man he is.

All labs have been coming back with raving reviews.  This week his phosphorus is a bit low so on Monday we ate mostly vegetables.

The house is still a total wreck.  If I were to tell you everything that was happening, we would be here all day.  I will share with you that the den, wash room, and motorcycle rooms are done.  The downstairs shower has been inoperable for three weeks.  Will be glad to get ChemoSabe off my premises, upstairs. 

Den - thus far --  Maxie - welcomes you!

Kitchen and dining areas were ripped out yesterday and tile should be down today with grout tomorrow.  Everything, except for the worker's mess, is looking great. 

ChemoSabe has been good about helping out and his energy levels have sustained.  With the maintenance he is on now, it is my hope he will continue to get stronger.  Yard work is on the horizon, but not on our list of priorities right now with the heat.  I haven't mowed in two weeks.  But, with mortar in your grass from the handy man, it may be hard.

Our family has grown.  Last Friday was ChemoSabe's 63rd birthday so I took him to our favorite pizza place to eat.  Our favorite waitress, (I'll call her Tara, because that's her name :)) decided she had a dog she didn't need.  A white Schnauzer.  She called her LuLu.  We acquired her last evening and we call her "Bootsie" after our beloved Boots.  She is a year old and very hyper.  I was very leery at first when we brought the other kids out, but when they all went outside, they were in their own world.  I hope it continues.

All else is good in our lives.  We continue to ride, even though the heat pulls us down on the bikes.  The wind cools us off, but if we stop, it is "unholy hot". 

I will continue to keep you posted.  It may be boring since ChemoSabe is doing so well, but I will put something in. 

Good afternoon and Love, Pepper

Kemo Sabe -- Word for the Day - Wednesday, June 23, 2010

Kemo Sabe
Definition: Ke-mo sah-bee (pronounced /ˌkiːmoʊˈsɑːbi/; often spelled kemo sabe or kemosabe) is the term of endearment used by the fictional Native American Tonto (and sometimes the Ranger himself) in the radio and television program The Lone Ranger, said to mean "trusty scout" or "faithful friend" in Potawatomi.[1][2] Its use has become so widespread it was entered into Webster's New Millennium Dictionary in 2002.

I continue to be amazed at how my ChemoSabe keeps up his pace. Even though he doesn't do the five days/four a day/two weeks on/or of steroids, he has about the same energy. He is now doing the three Dex, one day a week for a year. He has been up today since 1:30 a.m. He left the house at 2:30 and traveled to Greenville, MS. He was driving in the driveway at 6:00 p.m. My word for today should have been "Amazed".

Labs showed that CRP was way below registering, which is wonderful. No infection. I still think it was his dentist visit for the cleaning last month. I'm not the doctor -- I'm just sayin.

We have yet to begin the reflooring of all areas of the house. It has been discovered the foyer was affected, too. It was torn out yesterday. We are back to three big floor blowers and a giant dehumidifier. Last time it was six blowers and two dehumidifiers. These are just as noisy as they sit at the bottom of the stairs. I can't tell when our downstairs or upstairs air kicks on. I would be willing to bet our electric bill will hit $600 this month.

I have been letting all four dogs stay in the sun room every day while we are at work under a floor fan and ceiling fan. Even when I let them out for about 45 minutes when I get home, it is still too hot for them.

My sweet kemo sabe, Billie, that was putting up the fight with brain and lung cancer died peacefully at home last Wednesday. Her funeral was on Saturday. My Kemo Sabe, Kenny, did the services. One of the best services I have ever heard him do. They were close.

We are so looking forward to the weekend which begins for me tomorrow. We are keeping Big E for three days. What a treat. He will be seven in August. I get all melty when I think about him. I can be proud of his daddy setting such a good example.

ChemoSabe is loosing weight steadily, but not quickly. I believe the lower dose of Dex is keeping him from retaining fluid. He doesn't have those chubby Humpty Dumpty cheeks anymore. His hands are not bruising like they were from having thin skin and his eyes are not running, itchy or swelling. The doc told us during the last visit that these were major side effects of the Dex.

He worked in the yard again yesterday afternoon. He weedeated a lot around the house and flower beds. I found myself going to the window every few minutes to make certain he was okay. I am just not use to him being out of my sight very long when we are at home. If we are it is usually because he is asleep in the recliner. He and all four kids are in the bedroom, crashed. Two on the bed with him and two on the floor. I think I will have a little room!  No such luck.  I squeezed in beside ChemoSabe with his mouth in my ear (not by choice).  He awakens slightly and says, "Well, hey Sweetheart" and then burps in my ear. He says 'excuse me' and the next breath out of his mouth he is snoring.  I laugh and he asked what's is wrong.  I tell him he is "so romantic" and that I am going to the spare room so I won't interrupt his sleep.  He is just worn out!!

A kemo sabe of mine disappointed me today. I can't say why or what, but I would ask that you pray for our relationship. My feelings were dampened and I was caught off guard, but I can stand right back up and continue to love them. They probably don't realize what happened, but I know they realize things must change. They have been a kemo sabe to me for too long.

We had a little air conditioner problem on Monday. The dip pipe backed up and caused our bedroom door jam to swell. The AC closet was leaking water onto the stairs also. I called our terrific AC company at 7:00 a.m. and they were here by 9:30. It was nothing major, but when I got the call and the problem, Tony sounded serious. I told him I didn't need any bad news... Well, there was some. Bill, the tech, came down the stairs and tripped on the carpet (that was ripped out) and fell onto the bar and broke a bowl. I told him not to worry about the bowl and asked how was Bill. Bill was on his way to the doctor to get stitches, but he was more concerned about the bowl.

I called Bill that afternoon and he had two stitches. He wants me to send him the bill on the bowl. Gotta love him.

We are going to take E to eat pizza tomorrow night with Stretch and Rainman. He will love that. Heck, we will love it. No better way to spend the evening than with your grandson and friends, eating pizza.

Good evening, Kemo Sabe Kids --- Love, Pepper

Oops... someone shared a cartoon with me this afternoon -- It was a photo of Tonto and the Lone Ranger.  Tonto was sulking and here is what he had to say, "Tonto ride with KemoSabe for years, but KemoSabe still calls himself "Lone Ranger".  Make Tonto sad."  Thank you, JoEllen

Invictus -- Word for the Day -- Monday, June 21, 2010

Invictus

Definition:  unconquer, unconquerable, undefeated.

"Invictus" is a short Victorian poem by the English poet William Ernest Henley (1849–1903). It was written in 1875 and first published in 1888[1] in Henley's Book of Verses, where it was the fourth in a series of poems entitled Life and Death (Echoes).[2] It originally bore no title:[2] early printings contained only the dedication To R. T. H. B.—a reference to Robert Thomas Hamilton Bruce (1846–1899), a successful Scottish flour merchant and baker who was also a literary patron.[3] The familiar title "Invictus" (Latin for "unconquered"[4]) was added by Arthur Quiller-Couch when he included the poem in The Oxford Book Of English Verse (1900).[5][6]

I see a miracle in my driveway... ChemoSabe is moving bricks, shoveling dirt and sweating profusely.. I haven't seen this in almost three years.. Thank you, Lord, for remission.. Did he have to chose the hottest day of the year?! :)

The following is a poem from the movie "Invictus", with Morgan Freeman.  It is a true story of Nelson Mandela.  I thought the movie was incredible.  If you look up the definition of "Invictus" you will find another true story of the man that wrote the poem.  Enjoy!

Invictus -- Out of the night that covers me,

Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gait,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

I see a miracle in my driveway... ChemoSabe is moving bricks, shoveling dirt and sweating profusely.. I haven't seen this in almost three years.. Thank you, Lord, for remission.. Did he have to chose the hottest day of the year?! :)

Good evening and Love to all that love me, for me, as I love you for You!  Pepper

Edify -- Word for the Day -- Tuesday, June 15, 2010

Edify

Definition: to instruct and improve especially in moral and religious knowledge; uplift; enlighten, inform

Okay, those of you that haven't bashed me for not writing more frequently, this is your chance... Go ahead... Take a hit. I have no real excuse for not keeping you all up to date. We have just been enjoying life and getting on with work. GREAT NEWS TO REPORT!!! Doctor's visit on Friday, June 3 -- REMISSION continues!

I have a new boss and he enlightens me each day with Biblical stories relating to his personal experiences and the experiences of others. I enjoy being edified.

ChemoSabe's new schedule entitled "2nd Year Maintenance" consists of weekly visits to the clinic for labs and then a return trip for the Velcade. He stills continues Dex, but only three tablets one day a week. Thank the Lord for small favors. He is sleeping better and not wound as tight. I had to tattle on him during the doctor's visit regarding his crabbiness, laziness and down right hatefulness. Well, the last one is a little extreme, but you get the picture. I asked her when she thought he would get back to normal. She smiled and advised us the Dex was causing all the problems. It was also causing his eye infections, swelling ankles, excessive weight gain, thin skin causing heavy bruising. She promised he could be mowing yards and weed eating soon (attached with a smile).

Platelets were a whopping 100 his first day back at labs. WBC was at 20. This was even after being off Velcade and Dex for four weeks straight. Lesions have decreased from 25 in the last two years to 13.

We ride whenever we can.  We have traveled by bike to Eureka Springs three times since March.  We just returned from a cabin trip in northern Arkansas.  We already have another trip planned since we found the perfect housesitter for our kids. 

Work stills keeps ChemoSabe buried in paperwork and travel.  He continues to stand ahead and he loves his job more each day.  I believe what he loves most is the challenge of unexpected days.

We dealt with Mother's Day.  We did have a 2nd Year Survivor cook out combined with Mother's Day gifts.  I had been so depressed the week before I almost cancelled it.  But, it was about ChemoSabe still being with us so I got over my Pity Party pretty quick.  We had a very enjoyable time.  My little brother did not show up as it was quite difficult on him.  May marked the 1st anniversary of Sharon being gone. 

We have had major unscheduled tasks on the home front.  The downstairs toilet backed up and flooded the downstairs shower and over flowed onto the carpet in the bathroom.  The words "it was a mess" doesn't quite explain it.  The rooter guy had to come twice in one week.  To top it off, my insurance company since 1976 advised they couldn't pay because it was considered "flood" damage.  GIVE ME A BREAK!

Long story short -- they are paying and we are getting carpet and new tile in the damaged areas of the bathroom, hallway, bar area, the biker room and the den.  So, we are taking advantage of the work and having tile put in the kitchen, foyer, wash room, sun room and front dining room.  Every room in our house right now is carpet. 

I have been visiting a lady in the church where I work.  She has been fighting brain and lung cancer for a year.  She is in her final days.  She helped me so much when ChemoSabe was diagnosed and especially when mom left us.  I talk to her as I always have, but it pains me tremendously as she looks so much like my grandmother.  Her blue eyes look right through me.  She is such a precious woman.

Well, Kids... I have not been marking notes on my desk like I use to when I was blogging away.  It helps me to jot things down so I can share them.  Forgive me for being so lax.  I will do better.  But, at least you know, ChemoSabe continues to do well.  He is loving life.  He is thanking God every day for what we have and what we have accomplished.  He has been so good to us.

With that -- I will close

Until another day -- Love -- Pepper

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

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!!!

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.

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

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

Evanescent -- Word for the Day -- Tuesday, February 2, 2010

Evanescent

Definition: Tending to vanish like vapor

Been kinda quite this week with my man gone. I have enjoyed the silence and independence, but I don't like the silence and the independence. Doesn't make sense, does it? This trip has been the worse one, but the best one. He knows his limits and has been coming in after dinner and enjoying his quite study time. That helps me, too.

This is the last week where he will be off meds. He thinks his shots are evanescent in that he has some reactions. His face is bloated, his cheeks are splotched and his eyes have been burning and red. He claims it is because he is off the steroids. I have tried to refresh his memory that he had that problem before cancer came along. Why does he then look at me like 'don't I know that cancer is the reason for everything?'

We have talked each night. Last night for 45 min and tonight for 40. He is loving his room. He is right on the ocean and has a balcony with a small patio. He forgot and left the door open all night and slept like a baby. When he got out of the shower this morning he saw something white fly by. He went to the balcony and there sat two seagulls on the next balcony waiting for food. He figured he better shut his door.. ha

The meeting he is attending is the 2010 KickOff... and to reward for 2009. Last year he got seven awards and this year it was four... The best ones though. He loves that work and the people.

I think I saw an email already that he has work going on Saturday.

He told me a story about one of his Infusion nurses. She has a five year old grandson. He was suspended from school with a friend of his.... Mooning!!! Somehow it didn't seem to be his fault! ha

Labs went very well and the crap stayed down real good. He is still gaining more weight that we can handle, but I truly believe when we get back on those bikes we can sweat it out. I'm just sayin..

I look at him and see him asleep or working on his computer, or eating, or just sitting and daydreaming. He has changed in so many ways physically. He looks older but not haggard. Then when I look real deep I stiill see my man in there. Especially when he looks over at me and I see the twinkle in his eys.

Work, for me, has been going quite well. I feel I can finally do what I was hired to do. No hurdles. I hear a new pastor will be in in a couple of months. That will be a trying time for me, then.

Our son has been so good to us lately. With the bad weather and such. He even took time out of his Sunday, while we were in church to come over and do a big project for us. The bad part is we didn't notice it for a week. I thought ChemoSabe did it and he thought I did it... Then we looked at each other and laughed..when we realized who really did it.

We start back on the Dex and Velcade next week. I did his survey this week. You have to answer a series of questions about your sex life, can you get pregnant, have you shared your meds, blah, blah, blah. That's every month. Then when the order is ready they call you and you have to do the same survey again. BUT, they then ship it overnight next day delivery, FREE!

Boys are in the bed and I wouldn't have been up this late if ChemoSabe hadn't needed me.. So I'm headin for the hills.

Sleep Tight and Love -- Pepper

Recipe -- Word for the Day -- Thursday, January 21, 2010

Recipe

Definition: prescription: a set of instructions for making something from various ingredients: a formula or procedure for doing or attaining something

Just to catch you up on the labs and the last two weeks of treatment. And, drama...

Recipe -- If I were to do my own definition it would be: a meal of special ingredients shared with friends.

Last night I fixed stuff bell peppers. We haven't had those in a while. I took Son one to work this morning and he says you just can't imagine how much you can cram into a bell pepper. ChemoSabe couldn't eat all of his.

Tonight I fixed chicken breasts, rice and English peas. We have been lying off the bread... ChemoSabe can eat four pieces with margarine. Most times he brings out the Apple Butter. We have GOT TO LOSE!

I have been walking two miles in the afternoon with my favorite neighbor. We are walking it in 25 minutes. We are going to try for three next week. We walked so hard last week that my cheeks were sore to sit on when we went out to eat Friday night. Working those muscles.

So, back in dinner tonight. My boss, Ken, is always cooking. We talk about our favorite recipes. He spoke of one last week that I thought I would try, but I have been experimenting elsewhere. His is of Telapia. Sauteing onions, tomatoes and wine together. Well, tonight I did chicken breasts... See below

Put a 1/4 cup of oil in a skillet. Add your chicken breasts and heat high as if you are frying. Slightly brown on each side. Take out and drain on paper towel. While drying -- Heat in the oil chopped onions, bell peppers, and diced tomatoes (you can used canned, drained). Add 1/2 cup of red wine, salt, pepper and teaspoon of minced garlic. Saute until onions/peppers are just past crisp. Lower heat and add chicken... Simmer until you think it is JUST RIGHT..

Do your rice and peas. Then pour the chicken mixture over the rice... ENJOY this recipe! This is an easy dish for the guys to fix, too. Just make sure you don't drink the rest of the bottle of wine while you are cooking! ha

I want to mow tomorrow. It is suppose to be nice. I have cabin fever. If it rains, I can see the whole house being rearranged.

Labs have been very good the last two weeks, except I am still concerned about the WBC... It is at 3.5. His CRP (crap) is at 7. We think that is a result of another bruise on the top of his hand. If it ain't Pete scratching him, he is bumping it on the bike or something else.

He is having problems again with the left foot. It doesn't seem to be neuropathy. He took himself off the Gabapintine a couple of weeks ago since the numbness seemed to be less frequent. The last two days have resulted in massive pain in the arch, especially at night. I thought he was having cramps. He couldn't lie down or walk last night. It was some good strong pain, so tonight I started him back on it in the a.m. and p.m.

Since last week was the first week on and last Dex was on Friday, it brought on a rash of snappiness. I saw it coming last weekend and this week has resulted in more, but more toward work than toward me. I think he has learned his lesson! ha. He works through it very well by apologizing when it occurs, no matter who it is with or what it is about.

We are babysitting the Valentine's Day weekend. That will help take my mind off my mother. It will be a year since her passing. Seems just like yesterday.

Work has been unusual for both of us this week. I prayed for changes and got more than I expected and unexpected. It will be a challenge, but you know me, I love challenges. They energize me. When I focus on something hard, then I tend to lose weight. The great recipe for weight loss.

We had good news this week in that two insurance reports showed his cancer insurance is paying 100%. What happened? Thought we had met the million dollars limit in January 2009... It hasn't even been two years. But, that was only two bills out of 14 accounts. Oh, hum.

Guess it is time to get to bed.... I will continue to keep you posted.

Don't forget Valentine's Day -- you guys!

Good night and Love -- Pepper

Discord -- Word for the Day -- Wednesday, January 13, 2010

Discord

Definition: lack of agreement or harmony (as between persons, things, or ideas): ctive quarreling or conflict resulting from discord among persons or factions

Here we go! ChemoSabe started his cycle yesterday. Whenever he begins again every two weeks, it seems months since the last time. I scramble to the get med bottles to him to refill that he doesn't use daily. Then I call and do his survey for the Revlidmid. You basically have to do it twice and then you have to call the clinic to get it ordered. It's not like we wait to the last minute, but it seems that way.

With that, steroids began yesterday and he was up at the side of the bed at 3:30 a.m. kissing me. I thought, "What the heck?" I knew we had already kissed goodnight. He was fully clothes and smelled of cologne, hair spray, toothpaste and fabric softener from clean clothes. I looked at him through my little peepers and asked, "What's wrong?" He told me he was leaving for work..... STEROIDS! Could the man just not go ahead and clean my house in the wee hours of the morning instead of going to work? ha

His labs were good yesterday except for his WBC. They had dropped from 8.5 two weeks ago to 3.5 yesterday. Remember - 2.5 is the lowest before you go neutrapenic, meaning it will be mask time and restricting access. When we get his report on Friday we will know if we need to keep the kids up (dogs) and limit our contact with the grandkids or other outside sources.

The Word for the Day -- Discord -- deals with difficulties I am handling at work this week. I hate conflict, but it seems to follow me in my life in a personal or business relationship. ChemoSabe tells me at times, lovingly of course, that it is because I am too honest. How can one not be honest? It is true people usually know the hard truth of how they stand with me, but I am just not a kissy face. So, please pray for me during this time. Pray I will have patience, strength and the means to choose the right things to say and do in this time of stress.

We are eating well in the last few weeks after the holiday. One meat and two veggies without a dessert. I will also fix a fresh salad. It has been helping. We don't feel as bloated or full when we retire.

I will keep you updated on the physical data on ChemoSabe during or at the end of the week.

Good afternoon and Love -- Pepper

Magnanimous -- Word for the Day -- Friday, January 8, 2010

Magnanimous • \mag-NAN-uh-mus\ • adjective

Definition: showing or suggesting a lofty and courageous spirit: showing or suggesting nobility of feeling and generosity of mind.

Did you know?
When you see "anima," "animus," or a similar formation in a word, it's an indicator of something alive, lively, or spirited. Something "animated" is full of life, for example, and an "animal" is a living, breathing thing. The Latin word "animus" means "soul" or "spirit." In "magnanimous," that "animus" is joined by Latin "magnus," meaning "great." Basically meaning "greatness of spirit," "magnanimity" is the opposite of pettiness. A truly magnanimous person can lose without complaining and win without gloating. Angry disputes can sometimes be resolved when one side makes a magnanimous gesture toward another.

Today is my day off and I am truly enjoying the warmth of this old house. When we go out to house shop we always come back and enjoy the space and comfort. I don't like pulling the drapes, but we have so much glass it would cost a fortune to heat if I wanted to see nature all the time.

We had a big fire in the fireplace last night... Hot, hot, hot.. I plan to do it again today since the temperature is 14 deg. right now and it is only 10:30 a.m. I can hear my mother now, "Oh, my Lord!"

ChemoSabe is out and traveling the state today. He will be very busy the next couple of weeks planning a big trip. The Dex and Velcade start again next Tuesday. It is hard for him to be magnanimous about it. It has become a dread. I believe the most dreaded is the time out of his schedule that it takes and the weight changes it presents.

Sissy has been in bed since Christmas with bronchial pneumonia. She was gracious enough to call me on Monday to tell me. She is so hard headed! ha. I worry about her. She is my rock.

My little brother did tremendously well over the holidays. I believe it was because he has Austin. He bought her so much stuff he is now having to make shelves to put it up. I have posted their photo so you would know who you have been praying for. He is the one we could call magnanimous. He is one of the kindest men I know.

We laughed all through Christmas because it was the first time in his life he had to buy gifts. He didn't know what to get the nieces and nephews. I told him socks, because they play sports, fish, cheerlead and just plain get out and play. He felt embarrassed by the thought. Well, I texted him last night and told him I forgot to tell him what our older brother got us... LIGHTBULBS! AND, we needed them. They are the pigtailed kind that are suppose to last forever and they are brighter. I thought it was a terrific idea. Little brother scoffed. He couldn't believe it. He thought the idea was worse than socks! ha Men......

Speaking of men --- forgive me guys. My boss loves to tell people I ride my own motorcycle. He calls it a 'girlie bike' even though it is a 900cc. I often see men weighing 250 lb. riding the same model as mine. So, here we go with the 'man' story.

We had a bike donated to the church around Christmas. Our custodian rode it down the hall and I warned him if he fell he could not collect workers' comp. Well, boss comes in two days later. He fell and messed himself up pretty good. He didn't tell me until the next day. He had a strawberry over his eye bigger than a 50 cent piece. He had a bruise on the inside of his forearm about the size of coffee cup and he said he hurt his knee so bad he thought he had broken it. Our custodian found so many bloodied towels in one of the men's restroom he thought someone had been stabbed. Until I told him the 'rest of the story'. When ChemoSabe talked to him, pastor said he really scared him when he was sliding down the hallway on his face. I wish I had a video of that.

Well, pastor has really been ribbed about the non-motorized vehicular accident. He has had Christmas gift offers of two front teeth, training wheels to helmets. I promise you the next time he says something about my 'girlie bike' he will live to regret it. Because mine has a motor.

ChemoSabe had a fabulous surprise sitting on the front step last evening. An overnight package from the CEO of his company. It was a plate with gold trim commensurating his part in a $700 million revenue in November 2009. His grin was so big I believe I could have used it for the plate hanger. I was so proud of him. I have placed it in the china cabinet with my collection of almost 150 thimbles, right in the middle.

I have put a pot roast with veggies on for dinner after my hunger trip to WalMart. My momma always told me never to grocery shop before I ate. What can I say? She was always right.

I was reading the Courier on New Year's Eve and saw my mother's name. It was listed with many other individuals that passed away in our county in 2009. She just jumped out at me. It was the very first name I saw and she was about the 40th person down. My eyes stung a bit as I thought to myself, she would have gotten a kick out of seeing her name in the paper.

Well, I believe I have rambled enough for one day. I have been writing on this all day.

Please pray for the couple staying in the house behind the church, Stan and Susan. He had his stem cell transplant two weeks ago. His WBC is still at 0.064. That is seriously low. He can't stay out of the bathroom and he is very weak. I couldn't believe his wife, Susan, thinks they will be able to go back home to Florida next week. I hope they aren't disappointed.

Also, please pray for our friends, Sambo and Rosita (their blog names). Their adult daughter still seems to be having problems with an addiction. It is hard to watch your children go through such trials. My own went through the same. We are blessed. He has been clean since 1994. He almost died.

Keep your toes in the sand. Well, maybe, dream about having them in the sand. Pretty soon we will be complaining about the heat. Are we ever satisfied?

Good evening and Love -- Pepper

Myrmidon -- Word for the Day -- Tuesday, January 5, 2010

Myrmidon • \MER-muh-dahn\ • noun

Definition: a loyal follower; especially: a subordinate who executes orders unquestioningly or unscrupulously

Happy New Year to all you Myrmidon's. This will be the first writing of 2010.

ChemoSabe received labs the day after Christmas and everything looked good. We had a nice two weeks off and will start up with Dex and Velcade on Tuesday, January 12. I know he can't wait! ha.

The last week has seen some crabbiness. I have seen a lot of time spent in the recliner sleeping through movies we rented and then afterward I had claims that he had watched the whole movie. Hmmmm...I didn't know the background effects were sounds of snoring.

We spent our New Year's Eve with Stretch and Rainman. We waited for an hour to get a table at a nearby restaurant. The food was fabulous, but the prices were enormous. We all really wanted steak, but we all got chicken and pasta. If we had ordered a steak, it was just that... No potato, veggies or salad. That was extra. The cheapest steak was $25.00. Call me cheap, but I ain't paying that for someone to cook me a small piece of meat.

I fixed a turkey with all the trimmings for ChemoSabe and me on New Year's Day. My older brother showed up for the weekend. We all three stuffed ourselves. I made apple dumplings every night through Sunday. We are really needing a diet fix.

Back in December I wrote you about the 2nd year maintenance schedule beginning in March. It would be weekly Velcade injections and one day a week Dex. Well, I got a call New Year's Eve that the schedule has been pushed back to June. ChemoSabe was not a happy camper. He wanted to get the show on the road. June will be the six month interval for all the tests and doctor's appointment so I don't know why we were set up with the March dates to begin with.

The two weeks on and off will give him enough time to do some business stuff. He has some new jobs starting up so the Dex will give him plenty of energy to do late night responsibilities. I will just have to rent more movies for the weekends he is down and in that damn recliner. That is when I cook so much, too. I see 20 more pounds coming on.

There is a MM patient staying in the house behind the church that had a stem cell transplant last week. His WBC is 0.04... How low can you go? He has been very weak this week, but his attitude remains positive. He came over to visit last week and I tried to prepare him for the worse, BUT, I also told him it would be a "Rewarding" experience. His wife visited yesterday... They are Stan and Susan from Florida.

Please pray for them as they go through this process. He is having mood swings this week and she is experiencing something in their relationship that she never has before.

My friend and boss, the interim pastor, has received notice he will not be continuing on in the church. The pastor search team is getting close to a decision. I believe in his heart he really wanted to stay, but I also feel the other side of him is ready to go. What does this bring for me? Dunno...

It is just too cold for me... It is currently 29 deg. I don't like it. I want to ride. I see visions of us getting on the bikes and just heading out for the weekend. I need it... ChemoSabe needs it.. Stretch and Rainman need it.. With that, we will probably get out too early in the year and freeze our buns off, just to get out.

Well, I am rambling. Just wanted to touch base with you and let you know all is well. ChemoSabe still has his sense of humor and good health. We are happy and content.

Thank you all for giving us encouragement and keeping us in your prayers throughout 2009. In four months it will be two years. Next month will be a year since my mother passed away. I just can't believe time has passed so quickly.

Good Afternoon, Dear Myrmidons and Love -- Pepper