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 

Not Sure What's Going on....

Ed looks skinny and weak.  He has been sleeping a lot and his blood pressure was low yesterday.  We think that the bp went low because of the diuretics that he is taking for the fluid retention and because he is not eating salty foods at all. 

He does not like it that he is sleeping a lot.  I asked him why he was upset and he said that he was mad at himself because he was tired of staying in bed.  Our son is now staying with us and that has helped a little. At least now he has someone else to talk to besides me. 

I was frustrated a couple of days ago when I asked him what he ate and he just pointed to yogurt.  I told him that it was not fair that he wants to get better and is not trying.  He did get up and ate and has been trying to do a few things around the house.  Today he wore jeans again! we went to get his blood test done and then stopped to get strawberries.  He wanted to go out this evening but got tired. We will try tomorrow.

He has an appointment with the liver specialist next week at the Livermore VA.  I am not as cheery as I should be ..  it has been 14months now!!  Ed had a major procedure just a few days ago and it is understandable that he is tired and sleeping a lot.  I will talk to myself and get in a better mood.

Thank you all for reading my blog.  I hope to have better news for you next time :)

We'll See in a Month

Yeyyy!  Just came back from San Francisco.  Ed had his chemoambolization treatment yesterday and was released to go home today.  He is in good spirits.  It may be too early to say that the side affects are mild since I suppose that you have to give the chemo time to do its work.  He is taking a nap but before that he was asking if I am going to make dinner...so far..sooo good.  I'll keep you posted.   Please keep praying and we will keep strong and confident. 
thank you

Good Nutrition and a Team of Good Doctors

Bilirubin went down again..from 3.7 to 3.1!!!!
UCSF team decided to do chemoambulization and they want to do this quickly so we are going there next week.  The Chemo will be sent straight to the tumors and hopefully reduce the tumors in size or get rid of them completely.  Ed will be feeling ill for a week or two after that as the tumor shrinks and releases toxins that will have to removed from his body mostly by the liver.  So please say a prayer or two for him.  Hopefully his liver is able to handle this and it all turns out well.

We are stronger than ever.  Can't give up now the best is yet to come.

NEXAVAR BAD SIDE EFFECTS...BE GONE!

Although we are grateful that our oncologist was willing to try the chemo therapy when all the research and other doctors said it wouldn't work, after 3 weeks of treatment the liver was quickly getting worse.  The bilirubin went from 4.1 to 5.6 which is very very dangerous.  The Chemo was stopped and Ed has been without treatment since the end of January.  The tests this past week showed that the bilirubin is now 3.6!!!  The liver recuperated from the effects of the chemo and that is such good news.  Yes, 3.6 is still not a good number but the fact that the level went down gives us such hope.

We went to see a primary doctor at the VA clinic in Stockton to begin the process of transferring Ed's care there.  Dr. Morgan is an interesting person.  A mixture of good guy and, excuse my language, bitchy doctor :)  but this far I think we will be fine with him.

We received a letter from the San Francisco Doctor that checked Ed.  No recommendations yet, except for the fact that he thought that his Ascites needs to be controlled with medications and less or no fluid removals because of the chance of heavy bleeding and infections.  A letter is to follow with his recommendations for the care of the liver cancer. 

We continue to work with nutrition. no meat and lots of vegetables, grains and fruits.  tried the meatless meatballs from Trader Joe's with their organic marinara sauce and it was amazingly yummy!!