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Sunday, December 18, 2011


taking pain medication around the clock did not work for Edward. We finally decided that he would take pain meds as needed because this is the only way that he is able to get up from bed and do things around the house and at times go out with me after I come home from work. 
He had a scan at Travis in November that showed "no detectable" tumors!!!!  He will go again this coming week to have another scan done to make sure.  Ed is already talking about getting medication to treat his hepatitis virus and possibly moving on to a transplant.  this is an incredible place to be considering the early predictions of not living more than 2 to 6 months. 
Ed had a birthday two weeks ago.  62yrs old.  we celebrated at a pizzeria in Manteca with family and friends. 
We continue to stay away from meat.  Ed and I eat fish and eat cheese, eggs, grains, rice and pasta and try to eat plenty of fruits and vegetables.  This I think has made all the difference.  He is right now on almost no medication with the exception of water pills, stool softners, multivitamins and a very mild dose of antidepressant.  Of course, the TACE procedures are an important part of keeping Edward alive and confident of a good future.
Ed is wanting to enroll in Delta College to take a water color class.  I will help him get enrolled. 
my thoughts today are a little scattered.  there are other things going on around our lives that are taking me from keeping my full focus on Ed.  My son's friend is staying with us because his mom lost her apartment and he found himself homeless.  I did not want to add to my plate but I couldn't leave him out in the cold so he is with us.  I also feel a little behind with Christmas.  our tree is up with lights but the ornaments are still in the box.  My daughter does not call or visit her dad and that bothers me because I think that we did not do enough to install this type of caring when she was growing up.  She has medical problems herself so it may be that she is not feeling well enough and is not saying.  I feel that I need to get back in control of the situation because this is a very good time in our lives - post cancer- and I don't want to waste it feeling sorry for myself.  Thanks for reading my blog.  I hope all is going well for you and if i don't post before Christmas I wish you a very safe and peaceful holiday season!!  Merry Christmas

Wednesday, November 9, 2011

When the Going Gets Tough ...

The tough go to Sausalito!
It's been almost a month since the chemo procedure and although Ed is starting to show a little improvement it is just very slow and he has more pain than I expected a month after the procedure. 

He saw paliative care at Mather and met his new primary care doctor.  All is good but this were new health providers for Ed and first of all they were surprised that it's been 21 months since he was diagnosed.  Secondly, and most annoying, both came in with the preimposed idea that they were going to treat someone who is dying.  Ed and I did not accept that train of thought and we definitely let it be known that we were there to help Ed live a long life.  So, they said how can we help you. 

What concerns me now is that the paliative care wants him to be on a regular and constent medication schedule.  The pain medication is methadone.  Ed was taking morphine when he needed it.  Now they want him on pain killers 24hours per day.  That just sounds like taking care of the pain while waiting to die.  I hate that!  they want him to try it for a week keep a log of pain and hallucinations and call next Monday.  I hope this isn't the first step to death.  Ed is not ready for this, so the plan is that if Ed is taking the pain pills as directed and he is spending all day in bed I am going to talk with him to make sure that he is aware of where this is going.  As I've said to him a few times I am here to help you.  If you want to be comfortable while you wait for death I can do that or if you want to fight this to the very end I can also be here to help you.  He has always chosen to fight.  Thank God because I am not ready to lose him. 

My work has been very understanding of the many appointments that we have and thankfully I am an exempt employee and with the use of technology I can do some of my work away from the office. 

Joel Osteen reminded everyone to be thankful for all the blessings in our lives.  Monday I was feeling low because I felt alone I prayed and yesterday was a very calm and beautiful day blessed with people that made me see that I am a child of God and blessings sometimes come to me quietly.  Having an open mind and heart allowed me to fully receive those blessings.  there is nothing like praying. 

thanks for reading my blog.  please keep strong and I pray that you have a peaceful and blessed day.

Sunday, October 16, 2011

Awesome David Grant Air Force Medical Facility

Ed just had his 2nd chemoambulazation this past Thursday.  It was done at the Travis Air Force Base Medical Facility.  Awesome people.  The doctor said that it is very difficult to get all of the cancer in the liver and that if some little bit remains that it has to be watched and may need more treatment to get rid of it.  You see how this diagnosis is so much different than what Dr Rossaro from UC Davis told him in January of 2010 and then last year in October when he said he should just go home not see the oncologist anymore because there was nothing else to do but to call hospice.  But there is no use in looking back..except that I want to make sure that if you are told to give up that you don't.  Please get a second opinion and when that doctor says that there is nothing else to do please get a second opinion on the second opinion.  Don't give up that easily.   As the song says Keep on Fighting to the End and Dr. Rossaro we have no time for losers like you. 
Ed is feeling the effect of the chemo from thursday he is in a little bit of pain and has been in bed most of the day.  he was sent home with pain killers and antibiotics and should be fine in a couple of days.  he was scheduled to return to get a scan next month which is very surprising because even when he had the very best insurance doctors would not do a scan until three months after the procedure.  the air force is taking super good care of Ed and he is just enjoying the good treatment.  Ed was in the military, Army, 101st Airborne Division, Vietnam and he has letters of commendation and a bronze star.  He had asked that his last days be spent in the VA Medical facility but getting medical treatment from a military hospital that is extending his life is really making him happy. 

take care and keep up with your good nutrition and positive thinking.  Be strong and confident and live a long life!

Saturday, October 15, 2011

keep fighting til the very end

Sing it with me..We are the Champions, We are the Champions of the World!
No time for loser Dr. Rossaro

Wednesday, October 12, 2011

David's Article

Love and Support are Powerful

Where would you be without the love of your parents? Where would you be without the love of your spouse? Where would you be without the love of your kids? What about your friends? There is one thing that is certain in this world: Love and support are very powerful.

Cancer patients think the same thing. They, too, need people who love and support them, to help them make it through their condition. Fortunately, there are many
cancer support groups that are constantly filled with other people who know exactly what cancer patients are going through.

These support groups have new cancer patients, patients in remission, friends and family of cancer patients, and people who want to learn more about a cancer patient's life and questions. Moreover, there are groups for all different types of cancers and conditions from the common cancers such as
breast cancer to the rare cancers like mesothelioma.

Every day there are people who wake up and drive to their job. They drink their coffee and talk to their coworkers. They go home to their family and watch TV and eat dinner, but behind the scenes, there are hurting people who need love and support. They need support from people who are going through the same thing. The doctors can only offer information and treatment. Their friends and family are sympathetic, but don't fully understand. However, there is truly something therapeutic about receiving a hug from another cancer patient.

Just writing or talking about your feelings is therapeutic, as well. The opportunity to express your anxiety to other people is a relieving experience. Additionally, these people can offer hope and advice in return. The advice they give is not something you can receive anywhere else. Your doctors can't give that kind of advice to you because they are not the patients.

When cancer patients get together and share their feelings, the doors open for empowerment -- for courage. Suddenly, cancer patients can embrace their condition with confidence and optimism, which is very important for treatment and recovery.

If you have cancer, you need to get plugged into a cancer support group. The love and support you receive from these groups is priceless.

By: David Haas

Sunday, October 9, 2011

Looking forward

2nd chemoambulazation scheduled for next week at the Travis Medical Center.  Happy that doctors are still willing to treat the cancer even if it is two tumors at a time.  A lot happening with liver transplants and what once seemed to be the only cure now seems to be a bit of a chance because cancer returns even worse after the transplant and people are still passing away.  we've decided to "live" with cancer and just get the treatment that is available prefarably chemoambulazation. 
I was able to coordinate and hold the Dia del Campesino event this past Thursday which turned out nicely and it was quite an achievement to be able to do it because it takes soo much time and energy.  now we are looking forward to going on vacation to Seattle as soon as Ed feels better after the ambulazation.  we will fly there and come back on the train.  i hope that we are able to take the trip.  it will be so awesome even if we have to stay in the hotel all day and night.  Ed has his days and nights a little backwards because he sleeps until noon and then he stays awake until late afternoon, takes a short nap, and goes to sleep again after midnight.  he is cleaning up the patio and getting rid of the stuff that he has acumulated so that haha buy some more!  when we come back from vacation we will address our mortgage and the fact that we are upside down.  taking one thing at a time has helped us deal with this complicated life.  my daughter is not stopping by.  don't know exactly why.  i also want to get Ed involved with the VA group down the street so he can start building a social life and get a support group. 
Hope all is going well with everyone.  keep up the good work with nutrition and positive thinking and don't forget to pray.  good night!

Sunday, October 2, 2011

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. 

Tuesday, September 6, 2011

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. and prayers!

Friday, August 26, 2011

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!

Thursday, August 11, 2011

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 is stronger than the mountain!

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

Friday, July 22, 2011

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.

Tuesday, July 12, 2011


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

Saturday, June 18, 2011

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.

Friday, April 1, 2011

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 :)

Wednesday, March 23, 2011

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 far..sooo good.  I'll keep you posted.   Please keep praying and we will keep strong and confident. 
thank you

Friday, March 18, 2011

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.

Sunday, March 6, 2011


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!!

Saturday, February 26, 2011

Un Dia Bonito..en San Francisco

February 23rd!!! Hope that you remembered. 
Ed and I went to his appt with Dr. Bissell of the UCSF Liver Clinic.  We took 2 DVDs of the scans that he had done recently.  There was also a very large questionnaire that we completed before getting there. 

We were early to our appointment.  When we arrived and were parked at the garage I was worried that the long drive had taken a toll on our van and when I tried to restart it the van would not start.  Ed said open up the hood and got it to start for me.  This is the first time that he works on a car in more than 4 months. 

The doctor actually went through the whole questionnaire with us asking questions and making notations.  He noticed that Ed was retaining fluid in his abdomen and legs and mentioned that getting that fluid removed the way that we've been doing is not a good idea because of the high risk of infections.  He said that he would prescribe medication and adjust the one he is taking now so that the fluid retention can be controlled this way.  He also said "you are on a no salt diet, aren't you?"  well, no.  Our liver doctor in Sacramento doesn't really care and had not mentioned it.  Although I admit it seems only logical..duh  why didn't I think about that sooner?  but I am not a doctor or a nutritionist. 

He examined Ed and then said that he and his team would look at the scans and the information that we provided and that he would make recommendations and send that to Ed's primary doctor and to us.  He mentioned that treatment may involve the radiologists and he needs their opinion.  Ed mentioned that we may be going to the VA for treatment because insurance is running out.  The good doctor said that it was a good plan. The VA is doing some good things and we can take his recommendations with us.

We left satisfied that at least this doctor didn't say go home and die.  Ed wanted to walk through the Haight-Ashbury District which is right around the corner from UCSF.  We did and enjoyed ourselves. 

The next morning Ed woke up and made himself 2 pancakes and 2 eggs for breakfast!!  good sign of well being!

Thanks for your support and prayers.

Sunday, February 13, 2011

Still Strong and Confident....

Went for a blood test today.  Ed's arms are all black and blue from all the needle pokes that he's had from his weekly blood draws.  Today they drew blood from his hand.  The tech was very efficient and got it on the first try. 
Afterwards we went to Denny's for a late breakfast.  Ed's appetite is back and he enjoyed his large breakfast of eggs, french toast, a strip of bacon.  This is the first time he eats meat in a few weeks now.   We walked off the calories at Old Town Sacramento. By the time we got home his legs were very swollen.  He is resting now. 

I went back to work last week and he has been staying home trying to stay busy.  He seems more alert and less jaundiced.  It may be that his body is getting rid of the affects of the chemo.  I will call for lab results next week.  The visit to San Francisco is coming up soon and we can't wait to hear what the doctors there have to say.  For now Ed continues to battle the disease with absolutely no treatment except trying to eat healthy and lots of prayers.   Yesterday we were visited all day by family members and that picked up his spirits quite a bit.  Please continue to pray and send your good vibes our way. 

Thursday, February 3, 2011

sick of being sick

Well, it is more than a cold, it turned out to be pneumonia and believe me I've had enough of it.  breathing hurts, head hurts, it is just miserable.  I'm hoping that the antibiotic does its work and I will be feeling better tomorrow. I've never been so sick!!!

Ed had good news and not so good news.  his last labs show that blood counts and all those important things are good, but his liver function is suffering.  His bilirubin went up considerably, which is what the onconlogist was worried may happen if he was given Nexavar (chemo).  He was told to stop the Nexavar and the doctor will continue looking for treatments for him.  So he is now fighting the disease on his own with your prayers.  Hopefully UCSF has some other ideas,,,

A note about prayer, last night feeling sick and over whelmed I asked for help and help just showered on me this morning!!!!

Friday, January 28, 2011

The Healing Touch

Uggh! Uggh!  I'm sick with a chest cold that is kicking my butt and I'm trying to stay away from Ed so he doesn't catch it.  It's a double edge sword.  On one hand, he is having to do things for himself which is good because I will be going back to work soon.  On the other hand, I can't sit next to him, give him a hug, etc.  When Ed is feeling bad he lowers his head on to his left hand and stretches out his other hand so that I can hold it.  He calls this "the healing touch." no healing touches today. 
You may think that my blogs are too optimistic considering the situation.  Yes, I know that Ed's disease is serious.  but I rather spend my time helping him feel optimistic because I've learned that the emotional state of the person really matters in recovery.  Ed is looking a bit more jaundiced, has a lot of belly fluid, his legs are swollen and he started doing the gagging action that he did before.  I hope that this gets better when I get better.  His anxiety level will improve and his physical systems will improve.

  Have you seen the tv show the biggest looser?  Every week the participants weigh themselves and who ever stays above the line gets to stay another week.  The people above the line are still overweight but they managed to do what it takes to stay for another week.  Thanks for checking out my blog ... stay strong and confident and above the line.

Sunday, January 23, 2011

I've been spending hours and hours searching for stories of survival so that I can compare them and find a common link.  what is it that survivors do?  what treatments do they get?  which doctors or clinics do they use? 
There are tons of blogs and posts about cancer survivors.  Not many about liver cancer survivors ...nevertheless, the few that I found had a few things in common.
1. hope.  they do not give into the negative stats and comments from the doctors.
2. proactive. they search and learn about all their options and take control of their medical treatment - as much as possible.
3. diet - most change thier diets decreasing or eliminating meats and adding vegetables and fruit juices.  a couple went all vegan. 
4. Faith. most rely on their faith to get them through the bad days and to help them make decisions.
Number 2 and number 3 are difficult.  It is difficult to be learning about the condition and be directing the course at the same time.  I will take it on as a project and move forward proactively.    Changing our diet is also difficult - it requires that we be more aware of what we eat.  I say "we" because Ed and I are in this together.  I also need to be healthy to be able to help him.   Faith and hope is what is keeping us strong and confident. 
We spent most of the day at UC Davis again today.  A side affect that I am sure he does not want me to mention here.  but we are glad that we went in because at least we know what it is and aren't sitting here worried.  After that we went to Old Town Sacramento and walked around a bit.  We had a vegie sandwich with a fruit juice for lunch :)
hope all is well with you.  thanks for following my blog.  I've had some of you ask me what you can do to help me and this is a great help because it makes me feel that someone is listening and I am not going through this alone. 
take care

Saturday, January 22, 2011

Forever in blue jeans

Yes, after over two months of wearing sweats he wore his blue jeans yesterday.  This is a person who has a ton of jeans and has worn jeans about every day of his life with the exception of a very few times when I insisted that no, it was not appropriate to wear jeans.  It was very unusual to see him wearing sweats day after day this past two and a half months.

Thanks for supporting my blog.  blood pressure is low this morning which is probably due to the fluid removal that he just had done. plan is to have salty foods today and enjoy the sunshine. 
Have a great day!

Friday, January 21, 2011

breathing, eating, and thinking better

Wednesday, early morning, we headed for the UC Davis emergency room to request that fluid be removed from Ed's abdomen because he was having difficulty breathing and eating from the pressure of the fluid build up. 
His legs and feet were noticeably swollen and he complained of not feeling well.  Ascites, or the build up of fluid around the stomach, is another result of the liver not working well.
3 liters were removed with no problems! Thank God.  I was a little concerned because his blood pressure had been running low and I learned that when you remove fluid you have the chance of lowering the pressure even more.  He was watched for about an hour and a half after the procedure and then released to go home.  The first time that he had this procedure was back on Dec 5th when he woke up at 2am and asked me to take him to the doctor because he was having trouble breathing.  That day he had difficulty walking, was having nausea, and the confusion level was high.  We used a wheel chair to go in and to leave.  After the procedure the next day he felt so much better.  It is quite a different story from what happened this Wednesday.  He was uncomfortable but relaxed, joking with the emergency room doctor about her cold hands, and very much aware with very little confusion.  We went to eat afterwards. 

Yesterday, he was up and active.  He went to pick up medicine at the Smart Foods pharmacy by himself while I went to fax a letter next door at OfficeMax. Then we stopped by McDonald's and I asked him to go in and get us a snack.  He did.  This is such a great improvement and I am so happy for him!  Call me crazy but this is no time for hospice this is time to keep working, hoping, and praying for more improvement and with your help and prayers we will continue strong and confident towards recovery. 

We are planning a two day vacation at Fort Mason San Francisco by the Ocean. Yeyyy!

Wednesday, January 19, 2011

An Afternoon with Faith

Ed was missing his granddaughter.  She was sick with a cold and she did not want to get her grandfather sick so she stayed away for a few days.  Our daughter stopped by last week and Ed asked her to bring Faith over soon.  In the past, there's been many times when Ed said that the only person that really loves him is Faith.  In turn, Faith has always said that there's a special bond between them.  When her grandpa was diagnosed she, her mom, and step dad lived up in the mountains.  One day she was in the car with me and asked me about her grandpa's health.  I explained to her about the procedure that the doctors were going to do to get rid of the tumors, radioambulazation, and told her that the hope was that this would get rid of the cancer.  She thanked me and said that she appreciated having the detailed information.  She said that her mom was having a hard time and would no be able to give her the whole story but she wanted us to know that even though she is young she still wants to know.  Every once in a while she texts me and asks "how is grandpa doing?"  Now she reads my blog and texts me with a comment or two :). 

So Faith and her mom came over to see Ed on Monday.  Ed got up that morning and picked up around the house and when Faith came over he brought out the portable pool table and played three or four good rounds of pool with Faith - teaching her strategies along the way.  It looked like both of them were enjoying themselves.  When they left Ed was happy that they had come to visit and said "that was nice."

I don't have stats or test or trial results but I am sure that Monday afternoon with Faith was good for Ed's health...

Love You Faith

Saturday, January 15, 2011

Like Climbing Uphill with a Heavy Load on our Shoulders

Yes, there are some good days and some not so good.  The last three days have been challenging.  Ed's anxiety level is high right now due to an incident with my son who is disabled and is having emotional problems.  Our son needs professional psychological help but refuses it.  His last episode was too much for me and I turned his care over to the agency.  This is the only way that I'm going to be able to get him to accept help. Hopefully, if I am not there he will accept the agency's help.  His case worker is very good so I am comfortable with the decision.  Ed's energy and thirst for life is not as high as it was prior to this incident.  He looks tired and worried.  He has been asking our daughter to help and my daughter will help some during the transition.  I am not separating myself and our family completely from my son, I am just letting him know that he needs to accept the help that is being offered to him including psychological help because he needs it.  This is definitely weighing heavy on Ed.  I hate seeing the effect that it has on him but life must go on -

He is retaining too much fluid again and may have to go get this drained from his abdomen.  His legs are a little swollen also.  We'll call the primary doctor on Tuesday to see if he suggests that we go in for the fluid drain. 

At Ed's request we are going to try to go to church tomorrow, then to the blood test and out and about after that.  It is going to be a nice sunny day; hopefully this will help to bring Ed's spirits up a little.  I will try my best to help him relax and enjoy the day.  We need to go back to being Strong and Confident.  Your prayers are always needed.  Thank you!

Wednesday, January 12, 2011

San Francisco Here We Come - UCSF to be exact!

Yey! I finally got through the phone system to the Gastroenterology and Liver Disease clinic at UCSF and was helped to make an appt for Ed with Dr Bissell, Chief of the Dept and Director of the Nathional Institute of Health Liver Center.  San Francisco here we come - February 23rd!! Can't Wait!!!!!!

Why so excited?  Ed has the best doctors at UC Davis with the exception of one - Dr. Rossaro, who unfortunately is a Hepatologist at the Medical Center and who is in charge of coordinating Ed's treatment.  It is up to Dr Rossaro if Ed sees another specialist such as a specialist in radiology cancer treatment, or is sent for evalulation for liver transplant.  Dr. Rossaro decided a long time ago that Ed would not get the treatment that would save his life.  In my perception he did not think that Ed was worth the effort.  As a matter of fact I hold him responsible - he let more than a year go by without ordering a scan knowing full well that cancer was the next step in the progression of liver disease. At our last appointment with him he had an intern come in and tell us that there was no hope and that he would make a referral for hospice services.  Explanations of why Ed was not referred for liver transplant were short and unclear.  Ed then got progressively worse.  He did not eat, his legs were swollen, and he had trouble breathing. Even his skin hurt.   I had to stop working and take care of him.  Set an alrm for eating and taking his medicine because otherwise he would sleep through the day.  When I saw that he was slipping away and I talked to him.  I told him that I was not ready to lose him and asked him if he wanted to get better or did he want to be medicated and made comfortable to wait for death.  He said that he wanted to get better.  I told him that we would do this together but we needed to think as if we already survived this and need to be and always appear STRONG AND CONFIDENT.

I was not ready to allow Dr. Rossaro to interfere with our survival plan.  We needed a second I looked at other options I found UCSF.  Our family is very familiar with UCSF as our kids and grandchild have been treated for kidney disease there.  I donated my kidney to my granddaughter in 1996.   As I read about their Liver Disease Clinic and expertise I found that Ed should have been referred to UCSF for liver transplant at the first sign of cirrhosis.   We fired Dr. Rossaro and requested a helpatologist from UCSF. It is difficult to go through this process but strong and confident and the appointment is set for February 23rd!!!

Ed did dishes, picked up around the house, and went to eat at Round Table Pizza with me yesterday.  Today he is a bit tired and in a little pain but strong and confident we will continue on the road to better medical treatment.  I would like to say that I thank God for Dr. Tanaka, Oncologist,  who always spoke to us with the facts but never never gave up.  We owe him so much grattitude!

Saturday, January 8, 2011

Chili fries looked better than they tasted...

Thank you for supporting my blog.  Today was better than expected.  The ride to Sacramento was a little bumpy and tough on Ed's stomach.  We like to go to the lab on weekends because there are less people waiting and it is generally a stress free process.  Today there were people waiting when we got there.  Does everyone know our secret now? Ed is wearing sweat pants these days and since he has lost weight the bagginess of the pants make him look thinner. After the blood test we stopped at Carl's Jr for lunch.  He ordered chili fries and was only able to eat a few before he excused himself and went to the car to take pain medicine.  We went to Fry's to look for more hobby supplies.  We talked about possibly getting better fitting pants, jeans perhaps!!  Fry's is a huge store full of fun things.  He went one way and I went the other and met up at the snack bar for a soda. Back at home he installed the Norton Virus protection software that we bought, had a small plate of rice and chicken, built a fire and is now fast asleep snoring.  Granddaughter accepted a rain check on going to dinner with her grandpa and I.  Ed is looking forward to that.  Thank God that side affects from Chemo are mild.  He is scheduled for a scan on Monday.  Your support and prayers keep us strong and confident. 

Friday, January 7, 2011

January 7, 2011 - 24 hours after starting Chemo

All is well!  Doctor said some people have strong side affect reactions and others don't.  Edward had been very active and enthusiastic havaing me take him shopping for a hobby and wanting to visit with family.  Went to eat with our daughter.  But these past 24 hours are a little different.  He is a little tired and is complaining of abdomen pain.  had to take more pain medication.  The side affects are noticeable but maneagable.  We are going for a blood test tomorrow and will try to stay in Sacramento for a little while.  We will see how that goes - Strong and Confident we will get this blood test and enjoy the rest of the day!