When you first hear the words, "You have cancer", you stop breathing, your gut tightens,your mind goes into a panic mode and you think, they must not be talking to me.  I broke out in a cold sweat and wanted to start crying, but I held it in until I left the office.  I figure this is private, my anger, fear, grief, denial, I didn't want to share, not with banyone at that point.  I was wrong, sharing helps you get past all the fear, you really NEED to find a support group, a person, someone, someplace, who is where you are, who understands and relates to all you are going through and will be going through.  First, thank you for visiting this site, if this is you, stay with me, follow my journey, email me, skype me, ask, cry, yell, be mad, be sad, I do understand.  Let's get through this together.  If you are the loved one of a person suffering from a chronic illness, several chronic illnesses, cancer,you stay too and learn how you can help.  Share this blog with all you know.  This is a real, life and blood journey.  Share your stories with the readers, offering hope to others.  Be real, be honest, don't sugar coat your feelings or make excuses.  You have the right to be mad, sad.  Losing control over your body is a horrible thing.  

Just do not forget, ever, YOU are not alone.  I have your hand, your heart in mine, I care and want to make this journey peaceful for you, accepting what is, doing what we can do to feel better, going on, preparing ourselves and our loved ones for the time when we have to leave.  In one of my posts in this blog, there is a list to do, check it out and have it ready.  I care so much for you.

 

 

WHAT CANCER CANNOT DO

Cancer is so limited that:

It cannot cripple love

It cannot shatter hope

It cannot corrode faith

It cannot destroy peace

It cannot kill friendship

It cannot suppress memories

It cannot silence courage

It cannot invade the soul

It cannot steal eternal life

It cannot conquer the spirit

Cancernet-UK is a resource for individuals and their families living with and after cancer. It describes the treatments, their side effects and  tips on how to cope with them. Professionals and patients have teamed up to provide evidence based advice  emphasising the benefits of self help and lifestyle to improve well-being, reduce the risk of relapse and improve long term fulfilling survival.

http://www.cancernet.co.uk/index.html

Transplants-Some basic information

Some basic information about transplant's.  The links at the end of this are excellent and if you have any other to share, please do.  Besides the actual cost's listed below, there is a lot of additional cost's. You have to be on call 24/7 for your procedure, so if you do not live close by, take in transportation costs, living expenses(like motels), eating expenses, care giver, someone to help after the surgery with housework, cooking and so on.  Pet care, lawn care, babysitting or child care and I am sure the list can go on.  You will be on medication the rest of your life to prevent rejection, so that all needs to be added it.  There is a booklet listed below that helps you organize and make charts as to expenses and so forth.

You are told not to stress, but it is very hard when your whole life is being turned upside down and there are not enough organs for all who need them.  Plus, they have to find one that is compatible to you, and in the case of people that are infected with Hepatitis, the liver you receive must also be infected, then as soon as able, you need to go through the rough treatment again.

If you need any help or further information, please contact the agency below, they are professionals that can guide you along the way.
The costs will vary for each patient, based on insurance coverage, the type of transplant and the location of the transplant center. Patients will also incur lifetime medical expenses for follow-up care and prescriptions.

Below is a list of average costs for transplants and first-year expenses. The actual costs may be higher or lower than the figures listed here:


    Bone Marrow (autologous): $360,000
    Bone Marrow (allogeneic): $800,000
    Cornea: $25,000
    Heart: $1 million
    Intestine: $1.2 million
    Kidney: $260,000
    Liver: $575,000
    Lung: $550,000
    Double Lung: $800,000
    Pancreas: $290,000
    Heart/Lung: $1.2 million
    Kidney/Pancreas: $475,000
    Kidney/Heart: $1.3 million
    Liver/Kidney: $1 million



Booklet  Mapping the Maze
https://bethematch.org/Patient/Support_and_Resources/Resource_Library/Plan_resources/Mapping_the_Maze_-_Complete_Manual_%28PDF%29.aspx


Helpful Links:
http://www.transplants.org/resources/links


NFT..National Foundation for Transplants
http://www.transplants.org/about/mission

I have a paypal link on this site if you would like to donate to help someone who is having a transplant and can't afford all the extra's.  Extra's that I detailed above mean so much to someone and maybe a person can pull together the money needed for the first year and the actual transplant, but can't have the needed organ due to costs for living.  This is a way we can help.

 

Meditations: Native American Flute Album

Sunday's Time To Reflect and Be Healthy in Your Mind and Spirit

My son named me Momzilla.  He said it is because of the way I take life, head on, don't back down.  Younger me yes, now I am slower, take things easier and try not to stress.  Stressing is not healthy. Putting aside stress is hard for me, I tend to over think, and worry about everything, then I tell myself, " If I don't worry, who will?" It is the whole control my life, control my environment issues.  I feel that nothing is worse than losing control.


Having an illness that is progressing along with no positive endings makes you lose control.  I can not control a lot that goes on in my body or with my body.  I am starting to have a difficult time  staying on top of my thoughts, I call them the crazies.  The more toxic I become from my liver not processing the wastes from my body, the more I enter into the "fog zone".  Seeing things that are not real, hearing things that aren't there have become common for me.  My doctor says it is a good thing that I KNOW that what happens in the fog zone is not reality and that I can make a joke out of what is happening.  Most of the time, yes, I can stay on top of it, but once in awhile, depression flows in, bringing the colorless world, the hopelessness with it.


Some days I am ready to go, tired of the pain, the mental confusion, the swelling, the whole program, it is hard to stay positive.  Then, my cat does an adorable stretch, play with me routine and I say that dying can stand in line, at the back of the bus.  I do not want to miss watching tomorrow's sunrise, which fills the sky with shades of pink, the birds calling out to each other, waking up and hungry, the newness of another day.  I do not want to die in the spring time, it being my favorite season.  All the cold, dead of winter melts into a memory and is replaced by the freshness of new growth, a new beginning for life.  No, death can not have me in the Spring.My son named me Momzilla.  He said it is because of the way I take life, head on, don't back down.  Younger me yes, now I am slower, take things easier and try not to stress.  Stressing is not healthy. Putting aside stress is hard for me, I tend to over think, and worry about everything, then I tell myself, " If I don't worry, who will?" It is the whole control my life, control my environment issues.  I feel that nothing is worse than losing control.


Having an illness that is progressing along with no positive endings makes you lose control.  I can not control a lot that goes on in my body or with my body.  I am starting to have a difficult time  staying on top of my thoughts, I call them the crazies.  The more toxic I become from my liver not processing the wastes from my body, the more I enter into the "fog zone".  Seeing things that are not real, hearing things that aren't there have become common for me.  My doctor says it is a good thing that I KNOW that what happens in the fog zone is not reality and that I can make a joke out of what is happening.  Most of the time, yes, I can stay on top of it, but once in awhile, depression flows in, bringing the colorless world, the hopelessness with it.


Some days I am ready to go, tired of the pain, the mental confusion, the swelling, the whole program, it is hard to stay positive.  Then, my cat does an adorable stretch, play with me routine and I say that dying can stand in line, at the back of the bus.  I do not want to miss watching tomorrow's sunrise, which fills the sky with shades of pink, the birds calling out to each other, waking up and hungry, the newness of another day.  I do not want to die in the spring time, it being my favorite season.  All the cold, dead of winter melts into a memory and is replaced by the freshness of new growth, a new beginning for life.  No, death can not have me in the Spring.

A Look inside My Head..

Death: (noun) The action or fact of dying or being killed; the end of the life of a person or organism. The permanent ending of vital processes in a cell or tissue.

 

 “Life is pleasant. Death is peaceful. It's the transition that's troublesome.”
― Isaac Asimov

I think that the word death should be a verb, to me it is my final action here on earth, the final breathe, the last good-bye.  Lately death has been stalking me.  It circles around my space and takes whom it wants, when it wants, not caring nor feeling anything but causing sadness and pain.  Is the loss of your pet or human different?  Not to me.  I cry and grieve, feeling the pain in my chest, it hurts so much, can't breathe, can't sleep.


There has been so much lately, my cats, grand-son, daughter, friends, people in my support groups, so much.  The weight has become a heavy burden on my back, it pulls me down to the ground, closer to the grave.  I have shrunk almost 3 inches, is the earth calling me?  Does the smell of dirt surround me?


I understand why someone who is sick can consider ending their life, I have considered it myself, the pain, loss of control, the loneliness folds over you, pulling you to itself, not letting go.  Pulling you down, down.  I can't end my life, I have family.  This stops me.  And, I really don't want the virus to win, I want to win.

For those who read these words that are also fighting a chronic illness, you know and understand my feelings.  The illness takes your choices away, makes you bend to its rule.  And, you know that you are dying, slowly, but horribly, as one by one things either shut down or do not do as they are intended to do.  Our livers control so much and when it stops doing its job, you know that your time is closing. This nasty virus has hidden itself in your liver for so long, quietly doing its dirty work, then one day you get very sick and the virus is exposed.  For me, it was late in the process, I was in stage 4 of the progression.  And, I tried chemo(which is what the treatment is), was a non-responder, almost died from the cure so now I wait. 


I am in many support groups for HepC, which for me have been my hold on reality.  It is okay to be upset, to cry, to grieve, OK to be angry and you can't just pretend that those feelings are not there or chin up, you will get better.  Those feelings are real, I am not going to get better and I am going to die from some related issue that my liver controls.  That is a fact, reality, it bites, but it is what it is.  The groups take you as you are and do not judge you and understand what you are going through.


On a good day, I do not look "sick", just look old with a cane!  No one knows what is going on inside me, inside my mind.  I joke, laugh, poke fun at what is happening to me, I try to be brave and face what I am given.  I know from being a grief counselor, that there is very little to say to one grieving, this is a journey one takes alone.  Others can be there to listen to you ranting and crying, but for each one of us, we face our grief alone.

  As a person who is listening, the thing I need most, is just a warm, human body to listen and care.  Nothing needs to be said or done, just hear me and validate my pain, my grief and please do not turn away because you do not or can not deal with grief yourself, that is the worst thing one can do.  I am still Kathy, I still need you.  You see it happen all the time.  You lose a loved one, everyone hoovers around for a week or two, then they all disappear.  (not all if you are lucky). And, yes, my four legged friends are right here next to me, giving me warmth and unconditional love but I also need the human touch.


Everyone will face that moment, no one will get off.  I hope that when that moment comes for me, those around me will remember the love I had for them and that I would do anything in my power for  them and not dwell on what is happening now.  Don't remember sick kat, confused kat, unable to move kat..remember me laughing, and dancing and singing, of loving life and all the beauty and joys of nature.  Death takes you and you are gone but your love remains in the hearts of those who loved you.  For that reason I hold on and look for the beauty each day.

 People of Planet Earth

                  STOP  LOOK Listen Smell                       

Climb out of the Box  Come into the World
      Watch a Butterfly unfold its Wings
         Dance in a Circle  Let yourself Free
     Look through Your Child Eye  
                   Wonder and Behold

   

          Wisdom and the Mad Hat Ramblings

                        from a Crazy Kat

                                  and her side-kick Boo

          Join me and share the world 
                    Making it Better
                        Becoming Free 
Renewing, Redoing, Rethinking, Alive
     You just have this moment Hold onto it tight
                     The Night time is coming And, then it is to Late.

Taking a Break Trivia

June is PTSD Awareness Month.  This is a mental health condition.

June 1st..Say Something Nice Day

June 5th..National Doughnut Day

June 6th..National Trails Day

June 7th..African American Music Appreciation Month..started by Jimmy Carter in 1979.

June 14th..Family History Day and Flag Day

June 21st..Father's Day

June 22nd..Baby Boomers Recognition Day..boomers are those who where born from 1946 through 1964

June 23rd..United Nations Public Service Day..recognizing the value and virtue of service to the community

June 27th...Great American Camp-out

And you thought June was just a summer month!!

 

" The... patient should be made to understand that he or she must take charge of his own life.  Don't take your body to the doctor as if he were a repair shop."  ~Quentin Regestein

Living with Hepatitis C

Hepatitis C Symptoms

Education raises Awareness

Raising awareness about hepatitis C means know something about it. Here are a few powerful facts:

    More people in the U.S. die every year from hepatitis C than die from HIV.
    The hepatitis C death rate is increasing annually.
    More than half of those who die from hepatitis C, are 55 to 64 years old.
    The number of new hepatitis C infections is increasing at alarming rates, particularly among teens and young adults.
    Despite the increase in new hepatitis C virus (HCV) infections, there has been a decrease in the prevalence of HCV in the U.S. because so many are dying.
    The CDC recommends testing all persons born from 1945 through 1965 for hepatitis C

    Blood Tests

 What is alpha-fetoprotein (AFP) blood test?
    In which situations are high blood levels of AFP seen in adults?
    What tests are available for measuring AFP?
    What is the sensitivity of AFP for diagnosing liver cancer?
  
  Alpha-fetoprotein Blood Test Index

What tests are available for measuring AFP?

Several assays (tests) for measuring AFP are available. Generally, normal levels of AFP are below 10 ng/ml. Patients with various types of acute and chronic liver diseases without documentable liver cancer can have mild or even moderate elevations of AFP, though usually less than 500 ng/ml.

The use of the AFP assay in prenatal, perinatal, and pediatric care is beyond the scope of this discussion. We will confine the discussion to its use as a tumor screening test and as a tumor marker.

What is the sensitivity of AFP for diagnosing liver cancer?

Primary liver cancer, or hepatocellular carcinoma or hepatoma, is more common in some forms of chronic liver disease. As a screening test in patients with chronic hepatitis B and C, or hemochromatosis, AFP has a sensitivity for liver cancer of about 60%. In other words, an elevated AFP blood test is seen in about 60% of liver cancer patients. That leaves 40% of patients in these high-risk groups who can have liver cancer but have normal AFP levels. Consequently, the test is not diagnostic but is an indicator of a potential situation. Therefore, a normal AFP does not exclude liver cancer. For example; AFP levels are normal in a fibrolamellar carcinoma, a variant of hepatocellular carcinoma. Also, as noted above, an abnormal AFP does not mean that a patient has liver cancer. It is important to note, however, that patients with cirrhosis and an abnormal AFP, despite having no documentable liver cancer, still are at very high risk of developing liver cancer. Thus, any patient with cirrhosis and an elevated AFP, particularly with steadily rising blood levels, will either most likely develop liver cancer or actually already have an undiscovered liver cancer.

An AFP greater than 500 ng/ml is very suggestive of liver cancer. In fact, the blood level of AFP loosely relates to (correlates with) the size of the liver cancer.

Medical Author:
Tse-Ling Fong, MD
Medical Editor:
Charles Patrick Davis, MD, PhD