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.
maria

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!

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

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

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!

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!