Filling it to the brim....

I am allowing myself to go off line for the next week...to fill myself up to the brim!
I just did not want anyone to think that something here was WRONG....instead I am allowing
myself to refill...refuel...reconnect...

The News was GOOD!!

We received the bone marrow biopsy results today...and the marrow looked GOOD!! The chemo actually cleaned up the existence of the protein in the marrow....So we are in a good spot for the moment....we have a resting point....IT IS GOOD!
The protein level is on the rise again...and we will continue to have blood work drawn to monitor that...And different tests have been ordered....a PET Scan and a CT Scan to see if the cancerous protein is holding itself (storing up) and dividing itself (to make more) in his spleen...which could mean that his spleen would have to be removed....If he is going to have a bone marrow transplant (which is still highly suggested) NOW would be the time to harvest the stem cells while the marrow is the cleanest....because once the protein levels start to rise again they will start to deposit in the bone marrow again and they cannot do it then....I am not sure if Michael is going to do this or not..but it is his best chance for a longer resting time....
This cancer has a 5 year survival rate....and we are already into the 2nd year of this....So....I say...
LET'S PROVE THEM ALL WRONG!! BE THE EXCEPTION....OUT LAST THEM ALL!!!
How is that for a positive attitude!!
Today...the news was GOOD!! And we take this time to readjust a little...plan a vacation...around the visits and around the tests....and continue on....but today...with a little bit of a broader smile than yesterday!
And I have to say....that I get a lot of my strength from all who visit here and send me their heart felt wishes of love and healing.....THANK YOU!

changing face...

Today was the first day I noticed it....the "moon" look to Michael's face from the prednisone. Perhaps it has been coming, but today I noticed it...the changes...the sunken eyes...the swollen face...the signs....Perhaps it was because he walked up the stairs and then had to sit down in order to stop being dizzy....Things are changing....I notice them more today....He doesn't like to leave the chair as much anymore....For the past 2 nights he has actually slept all night in the NEW CHAIR that reclines to a flat surface like a bed...I am almost sorry (for myself) that we got that chair! Today, I notice....I am aware....Some days it is almost as if I forget...things seem so normal...doing the every day things that most people do...some mundane...some just plain fun...like a drive in the country and the first grilled hot dog of the season! Days when I am so excited about what I am creating (I have been on a huge creative roll with the reawakening of Spring) that I over look things because I am so self absorbed... But today....today I notice the signs of illness...and they are very apparent....Today, I will take more time to be gentle with him....and gentle with myself....Hopefully we will get the results of the bone marrow biopsy tomorrow....perhaps this is a day of awakening to the reality we will face tomorrow....But I get ahead of myself....Today is the ONLY day that matters!

"CAN"cer

You find more and more people who are diagnosed or have a loved one with cancer...Cancer does not discriminate... from babies to the elderly...across all races..all creeds...all nations.... You do hear more and more people surviving and living with cancer though...which gives me HOPE... However, life with cancer changes dramatically...You go from day to day shifting from keeping the disease under control...to trying to maintain a satisfying lifestyle. Reading everything that you can get your hands on from the latest treatments to holistic medicine. There are days when you feel challenged...and days that you want to quit....but there is rarely a day when you want to stop living. Even though we are all aware that no one lives forever, it is often hard to imagine that life is also limited.

What I am learning is that you can take the “CAN” in Cancer and look at life differently. You can start to become more aware of the things that you have never really looked at for their simple beauty....a sunset...the brilliance of the stars ...the many colors of Spring...hearing a robin sing just for you...seeing your children or grandchildren in loving new ways. You can heighten your awareness...let go of your limitations and inhibitions...find a freedom in living.

There is no amount of money that can buy any of us another day....it does not matter one bit what we wear or what kind of car we drive...where we live or where we go to vacation...it doesn’t matter how much money we have in the bank...What I am really finding out is how to live life...give hugs...say “I love you” with all your heart...laugh at corny jokes and discover beauty where you least expect it.

As I choose to remain hopeful during this time of living with my husbands’ cancer I am also learning some very valueable life lessons that I would not have had the chance to learn. I am learning that I “CAN” survive this experience, and I am learning I “CAN” thrive ....not so much in spite of it, but as a result of it. Certainly it is not a life I would have choosen, but it is one that is showing me how rich my life really is. I am learning the diffference between cure and healing, as I listen to my inner voice. I am learning I “CAN” let go of grudges...I “CAN” forgive myself and others...I am learning all this and more as I travel this path and I am beginning to see that I “CAN” feel peaceful...I “CAN” experience joy...and I “CAN” see how precious life is as I look upon each day truly as a gift.

Blood Test...

It has come to my attention that NOT everyone knows what a blood test entails....So I am going to try the best I can to explain that a little for you...Michael gets 4 tubes of blood drawn every Monday (luckily he has a cathater in his neck that saves his arms from being poked and prodded every week)

BLOOD COUNTS:

A blood count is the measurement of the number of blood cells a person has in their circulation as shown in a lab sample of blood....Blood cells divide rapidly; since chemo targets rapidly dividing cells (like cancer) it also affects the blood cells....When having chemo treatments, your blood cell production is suppressed...

COMPLETE BLOOD COUNT (CBC):

* RBC (red blood cells): carry oxygen and remove waste (measured in millions per cubic millimeter of the blood)
* HGB (hemoglobin): Protein part of the red blood cell (measured in terms of weight)
*HCT (hematocrit): percentage of blood made of red cells (measured in percentage)
*Platelets: cells that help stop bleeding by clotting (measured in one-millionth of a liter)
*WBC (white blood cells): help the body fight infection (meansured in thousands per cubic milliliter)
* Differential ABC (automated blood count): measures 5 specific types of white blood cells (measured as a percentage of all white blood cells)
*Neutrophils: cells that fight off infection
*Lymphocytes (B and T cells): create antibodies, attack foreign invaders
*Monocytes: Ingest foreign material.
*Eosinophils: Destroy parasites, respond to allergic reactions
*Basophils: Play a major role in inflammation...

Along with the CBC...Michael also gets another type of test done which is a blood chemistry test...
This test analyzes the plasma (serum), which is the liquid portion of your blood i which the cells and platelets travel. A blood chemistry profile will include values for substances such as electrolytes (sodium, potassium, liver enzymes (alkaline phosphatase, bilirubin), kidney function test (urea nitrogen) protein, lipids (cholesterol) thyroid function tests, glucose and iron. These tests along with others help the doctor to make decisions about your treatment...

PHEW!...... And you thought it was just red stuff that came out of a cut that you needed to put a band-aid on!! I am learning more and more every day....but this still confuses me....I look at the results....with the numbers on them....and the one thing I know is that his are all out of whack...some are HIGH....some are LOW....so I compare them to the week before...the month before....the month before that to see the changes that are going on....and luckily I have friends who know a great deal about this stuff so they help me to understand it better....
I hope this gives you at least an idea of what that blood work Monday is all about!

And once again we wait....

The bone marrow biopsy took place today....It is a painful procedure...but Michael tolerated it well.
The Doctor however was not pleased with some of the things that he has neglected to tell me...and her....He has lots of bed sores from sitting to long....and he is retaining fluid from the prednisone...so she is starting to cut back on the dosage that he takes....reminding him that with this cut back he will also start to lose weight once again....that the 25 pounds that he has put on is mostly due to the drug he is taking....I have noticed a great deal lately...eyes wide open so to say....but he is beginning to look very gray in color....he is beginning once again to sleep for long lengths of time...he is beginning once again to resemble the man who I first took to the Doctor....the one before the chemo...
I don't know what it is about waiting ....but it is a very difficult thing to do.(we live in such a fast ...I want it now world)...and yet, I am perfectly aware that one needs to stay in today....to cherish the moment....to not look backward or jump to far ahead....and yet waiting for the results for a week or more is going to be difficult.... (instant gratification)...So I occupy my thoughts tonight...at this late hour...I come here to get some of this out of me so that tomorrow I can face the day head on with vim and vigor! And I will look for the light...for the pleasures...for the happiness of the day instead of focusing on what the outcome to this test is going to tell me...do to me...
Tonight I am fearful....so I will go off to slumber....because tomorrow....when my feet hit the floor....it is going to be another day...

Bone Marrow Biopsy Today...

Today we go for the 2nd bone marrow biopsy to see just how far along we are with this cancer and what the "game plan" is from here.....This is the procedure that will be done today....It will be a long week before we get the results.....AHHHHHHHH!

A bone marrow biopsy may be performed on an outpatient basis or as part of your stay in a hospital. Procedures may vary depending on your condition and your physician's practices.

A bone marrow biopsy is commonly done using the pelvis (iliac crest), but another bone (such as the breastbone) may be used. In a child, a leg bone or vertebra (bone in the spine) may be used.

Generally, a bone marrow biopsy follows this process:

1. You will be asked to remove clothing and will be given a gown to wear.
2. Your position may vary depending on the bone that is used. If the pelvis is used, you may be asked to lie on your side or your stomach.
3. During the procedure, you will need to lie as still as possible.
4. The skin over the biopsy site will be cleansed with an antiseptic solution.
5. As the physician injects a local anesthetic to numb the area, you will feel a needle stick and a brief stinging sensation.
6. A small incision may be made over the biopsy site and the biopsy needle will be inserted through the surface of the bone and into the middle of the bone (bone marrow).
7. A bone marrow aspiration is usually performed first. The physician will use a syringe to pull a small liquid sample of the bone marrow cells through the needle. It is common to feel pressure as the needle is pressed into the bone, and a pulling sensation when the marrow is removed.
8. The physician will remove a small, solid piece of bone marrow, called a core biopsy, using a special hollow needle.
9. The biopsy needle will be withdrawn and firm pressure will be applied to the biopsy site for a few minutes, until the bleeding has stopped.
10. A sterile bandage/dressing will be applied.
11. The bone marrow samples will be sent to the lab for examination.

"let me kiss it and it will feel better"

This is the very first lesson I can remember learning about the power of how love can heal. Falling down and scraping a knee which would then receive a band-aid and a kiss to make it feel better..And you know I think I actually believed that it did...at least it always stopped the tears from flowing....A simple act of love...nothing that a Doctor did...nothing that was a medicine or treatment of sorts...just a very simple act of love.....Most of us have a deep desire to make a difference in someones life.....and we are all given the opportunity to do that daily....By giving of your time...your words...a card....a meal...listening... we are able to focus on the needs and concerns of someone else.....By doing this with an open heart it produces a bond...a connection....and what you walk away with is even a greater gift....You find that you are also giving to yourself....We can all see opportunities ...small ones to large ones....we can hold open a door for someone....let that person cut in line who only has one item to purchase....be kinder to our parents...our children...our loved ones by just telling them that we appreciate them in our lives...connect with others and there is a value for both the giver and the receiver....Mother Teresa once said..."few of us can do great things, but all of us can do small things with great love."...Today, as I am going about my day....my eyes are open....and I am going to extend myself .... giving more in order to receive more....unconditionally...from the heart...with no strings attached.

Don't be bitter...Be better!

"Don't be bitter....Be better!" was something that my Dad use to say all the time when I was growing up! Whenever I would start to complain about someone...or how life dealt me a bad hand....He would just always say that....I have used it over the years myself...and sometimes I have even followed that advice (other times it is far more difficult to do...at least that is what I use to think)..but NOW...I think it is better to become better....that the choices we make will make all the difference in how we handle our challenges....how one responds to friends and family in a positive way rather than a negative way gives us a since of feeling better...How if we get up every day and face life in a positive way we can chase the negative of this cancer away for the moment....Life is all what we make it....whether the time we have left is short or long....isn't it better to go about things not being bitter? Won't we bring more positive our way as we generate the positive? Simple, now that I think of it....My Dad, passed away in April 1987, from cancer....I remember being really sad about it one day, and he repeated his sage advice once again....and he was not bitter....he had led a good life...he was happy to have seen his children grow...his grandchild being born....and he loved and was loved....You just can't get better than that!

Watching and Waiting....Castles in the Air....

I did this little 4 by 4 painting 2 years ago....not knowing then what I know now.....but it speaks to me today....It gives me a message and a lesson....
Watching and waiting....Castles in the air!
This is a difficult road to go down...not knowing what the next step is at this moment....watching as my husband shakes with tremors and is weakened when he stands....but I know that life is still calling ME.....and so I think of sand castles today.....When we hear the word "cancer" our world is torn apart ...like a sand castle that is washed away by the waves..(why invest the time and energy to make another one when it will be crushed too?)...You start to become so fearful...and believe that your dreams are now washed away too....shattered....and it becomes difficult to believe that the world...that friends and family are going along with their lives as if NOTHING is wrong when you know that your world is changing....And a jealousy washes over you...The lesson that I am learning is that when cancer shatters one's life....one must remember that you can go to the beach again (even in your mind).....you can build another sand castle...and if necessary even another one and another one....You must remember to be like a child who although spent so much time creating that castle that even though you might be disappointed, even crushed, that the waves washed it away...you know that you can build another one...and hope that it will be somehow strong enough to withstand the small waves and hopefully the large ones will only partially knock it down...but you stand with your shovel and your pail and your dreams and you build again! Today, I am rebuilding sandcastle dreams...(even if they are only in my mind!) For it is our dreams....our sand castles that can be rebuilt that allow us to go on day to day with HOPE.....

blood work Monday

The Doctor (Dr. V) we normally have was on vacation today....So the blood work was drawn...and we had the original Doctor (Dr. W) who saw Michael back in September of 08....It is difficult to play "catch up" when he is not the primary Doctor....He wanted to do chemo today....looked at the counts and that was his suggestion....Our Doctor is still at the "wait and see" after we have the bone marrow done next week....The Dr. looked puzzled..."So you don't want to do the chemo today?" was the question asked.....Should I know that answer to that question really?! Finally I just said....lets stay with the course of action we are on....there must be a reason that Dr. V wants to do it that way...."well ok then....but I would of suggested the chemo" Two different Dr.'s with 2 different ways of doing things.....makes you sort of wonder.....HUMMMMMM.....
Anyhow, we did not wait for the protein levels today....just didn't seem to be any reason to do so....I talked with a woman who comes every week with her husband....Her and I talk about books...life...and how we are each doing...neither of us attends a support group....but we are both happy to hear when the other person says..."I understand"...because we both do...and how our houses have gone to hell in a hand basket because of all the running around we are now required to do....and how we both tend to cry in the bath tub so that the noise of the water can muffle the sound of our tears....and how being "strong" is not always the easiest thing to do when your life is changing around you....We are sisters in this confusion....we are kindred spirits....we hold each other up...and sooth each other when we can....for we do....truly understand one another...
And as you can see....yesterday is GONE....and today, I am back at work!! Sure hope I get a pay raise! LOL

Take this Job and Shove IT!

Did you ever feel that way? Ever feel like the BEST you give is JUST NOT GOOD ENOUGH!
Today, is one of those days.....Predizone or not...You can take this JOB AND SHOVE IT TODAY!
Can you tell I am angry....?????????? This will pass I know but right now....at this very moment no matter what I do....no matter what I say....No matter what I cook....no matter what I bake...no matter how creative I am...no matter how much I clean or do laundry....or even breathe....It is just not good enough......BOY.....It just pisses me OFF!

Eye Surgery..

Today, was the day we went for the retina surgery....Arriving at the hospital at 8:30...coming home by 2:00...between prepping and surgery...and recovery time...We will not know if the surgery will help his eye sight improve for 2 to 6 months...But he came thru it with flying colors...and the Doctor said it went well....He goes back tomorrow for an after surgery exam and then again in another week...I am not sure how many weeks we will be doing that...The hope is that he will get back anywhere from 25% to 50% of his vision back in the eye that he is legally blind in...Michael really wanted to have this surgery done....When one is not able to do to many other things he was becoming increasingly frustrated with not even being able to watch TV (he could only listen to it) or to read the computer without a huge strain on his better eye....So the surgery was done...I can't imagine what he is going thru...I really can't....So, at least we know that we gave it a good try....We are still in a wait and see pattern with everything else till the bone marrow biopsy on the 16th..
Life continues on...We laugh a lot lately...talk alot...and rediscover some of the joys of being married to each other....Sometimes the every day things of life just got in the way of life here at home and we did not even realize it at times. So today, we are hopeful that the surgery will give him a certain quality of life that he has not had since September of 08....
Remember to tell those you love how much you care today....It is the most important thing we can do for one another...and then...reach out and touch someone who needs a little TLC....they will welcome it with open arms....We did that today too....and it was good for all involved....

back again...

I had taken a few days of R & R ...away from writing...away from typing...away from paints and pens ...Was it GOOD? well, that is a difficult thing to answer...it has caused some upheaval...but I am sure that things will work out exactly as they are suppose to....
Today, was blood work Monday...and the counts were acceptable...so I guess the booster shots did there thing...although I am finding that Michael is suffering from a great deal of headaches...and seems terribly confused most of the time...repeating...and repeating....and then repeating again ...that might be something I just have to get use to....PATIENCE!! a lesson that I am still trying to learn! So the eye surgery has been scheduled for Thursday...tomorrow is pre-admission testing at 8 AM...So we will be up and out early....And his new chair arrived today....So he now is in the lap of comfort as he sits...
I have many things to do to prepare myself for the days ahead when he will not be able to see hardly at all....but I am mentally getting myself prepared for that...and perhaps the snow will stop flying around upstate NY so much and the sun will shine....and life will appear to be better....
I am counting the days now till SPRING!