don't know what to title this one

just here.  there is so much happening and I wish that it would just pass me by and ignore that i am here.  it was a good day but at this moment i am feeling the hurt.  i am going to go to bed and sleep now. tomorrow is another day and i should be alright. 

what does it mean to be strong and confident?

I've had time to think about being strong and confident.  Some of the friends that I have through the Cancer Survivor Network board are going through tough times and reading their posts helped me define what being strong and confident is for me.
Being strong up to now has meant that I fight against the disease.  That I do lots of research and know that I should not expect that doctors or pharmaucetical companies have all the answers.  That listening and weighing the information is very important before taking action.  It has meant that I do not let my husband die without making him fight the war of his life. 
Now I see that I have been doing the right thing.  I should've been fighting, reading and researching, and standing strong to find him the best treatment possible no matter what.  That was and is still a huge part of being strong and confident; but now, after much thought and consideration, I am also including being strong by standing by Ed when he decides that he is done fighting.  I am not giving up and am not in any way supporting that he give up the fight, I am just saying that it is not up to me.  That there are two more involved in this, Ed and God.  And that when the ends comes I will stand strong by him and will be confident that this is what my role is.  I will miss him so much.  I will be so lonely for the rest of my life, but I will be ok because I will know that it is not up to me to interfere with what must be. 
I hope and pray that liver cancer does not hit anyone else in the world, that when someone is diagnosed is not too late, and that if they do get it that they have a strong and confident individual standing by them making sure that they get the best care possible and that when the end comes they will do what they can to make it a peaceful and loving passing. 
..love and prayers!

blood test results are good but transplant is not in the plan

So what do we want first the good news or the bad news?  Ed's blood tests results are really good he is actually very healthy except for the cancer!!! and i am not being sarcastic.  all his levels for blood pressure and other tests are very good.  His liver is actually better he is not jaundiced adn his ammonia levels are good BUT he has 6 tumors.  he used to have 5. not sure if he always had 6 and drs only saw 5 or if he had 5 and now he has 6??
So that is the medical report..but life is more than a medical report and with God's help we will continue trying to live a good life within our means and abilities.  We are going to plan a vacation - we plan to go on a train ride up north hopefully all the way to Seattle.  That would be amazing!
I am concerned that some of my friends on the cancer survivor network who are caregivers for their husbands are having a very difficult time.  I posted to try to get them to focus less on the sad and negative and to go back to seeing the glass half full - but i know what they are going through and it is definitely not easy.  i'll leave it at that and come back and tell you how our appt goes with the Oncologist at Mather and the Radiologist at Travis.  Ed will be evaluated for more chemoambulazation treatments. 
take care and be strong!

Talk to the Mountain

Last Sunday, as almost every Sunday morning, Ed and I watch and pray with Joel Osteen.  We love his message of hope.  Sunday he said that if you are facing an obstacle that yes you should pray to have it removed but that also in faith you must act as if it has been already removed.  He said talk to the mountain.  the problem that you are facing maybe a personal, financial or medical problem, pray and then let your problme know that it is not stronger than you and it will not keep you from what God has in store for your future.    Ed was very inspired by this message and he has been putting extra effort in keeping busy and not letting his health get in the way of doing what he wants to do.  So he went back to going out once a day and is asking me everyday if there is something that he can help with.  he is trying to install a fan in our bedroom and is almost done.  Never underestimate the power of faith ..it is stronger than the mountain!

have a good night and keep strong.
love and prayers to all my sisters

sooner or later but not without a fight

so even after a year and a half has gone by and Ed is doing considerably well with one or two episodes of abdominal pain per day and then goes about slowly cleaning house, taking care of the puppy, reading, and trying his best to enjoy his day, the doctors still insist that he is going to die.  Well I guess if they say it long enough they will be right...sooner or later it is what happens to all of us, right?!

It's ok.  I tell Ed not to let that get him down, they are only saying what they know to say.  but if I was them I would get the message that they've been wrong this far with their predictions.  His primary said the other day, "you have liver cancer ...but only God knows how long he wants you to stay around"  pretty amazing for a doctor to say but I am no stranger to God's blessings as my son was given 6 monhs when he was a baby and here he is at 31yrs old. 

Let's not give up!!!! Only God knows how long he wants us or our loved ones around.
Have a good night.

Hello

So, it has been almost one year and a half...........we are still here!!

On a path to healing

I apologize for not blogging these past few weeks.  I don't exactly know why I didn't.  I know that feeling strong turned into feeling angry and that is not what I want.  Anger is natural but in my opinion can turn into negative and that is not good for anyone.  So today I begin to turn that around because I know that I can do better than that.  So let me tell you what's been going on with Ed and our path to healing. 

Ed's leave of absence from work ended and we filed for disability retirement.  This is a difficult task because it takes you from your I'm going to get better mindset to a mindset that your life as a productive human being is ended.  I've had to help Ed not get stuck in that mode but to look forward to retirement.  

Last week the father of my son's best friend passed away from liver cancer.  That is weighing on all of us.  He had been away from the country for a long time and just came home two weeks ago to spend his last days at home.  We pray for him and for my son's friend.  

Anger is understandable.  needs to be recognized, but that energy needs to be redirected to making progress towards getting better and winning the big fight!

Ed still has good days and not so good days.  For a while there he was in super good spirits and had lots of energy.  He has lost a lot of weight and now weighs one pound less than I do.  I'm not skinny but I never thought that I would be the "heavy" of the two :)!  Normally, he gets up, helps clean the house, naps, and then waits for me to have dinner.  We are still not eating beef, chicken, or pork.  

I recommend that you read The China Study.  I really think that the American diet is toxic and it is responsible for the progression of the many chronic illnesses that we suffer in the West.  Try to eat a vegetable, grains, and natural foods diet for better health.  We include fish and are limiting our intake of milk and substituting with soy.  

Ed is being treated by the VA.  We visit the doctors less frequently and blood tests are less frequent also.  this was challenging to accept but when you think about it, Ed's health is more dependant on what he does at home than what the doctors do for him.  He is scheduled to the VA liver clinic in July and his primary in Sept.  He had a sonogram last week and the results were not alarming.  We will wait until the liver clinic appointment to hear if anything has changed. 

So far it is managing the emotional well being and nutrition that has really made a difference.

thanks for listening and please stay strong and hopeful.
maria