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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!