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.

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. 

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!!!!

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.

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

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!

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!