Caregiver

Hi, First time on this message board.  Finally made the time.  My husband became jaundis the end of May.  He had a stint put in. He had 2 Endoscopies done by two Dr.'s.  They felt there was a tumor by the tests results coming back normal and abnormal.. So they knew there was a tumor but they could not locate it.  One of those Dr.'s sent us to Mass General in Boston to further this.  Thank goodness he did.  We went there and they did a 3rd  Endo. and found the tumor.  They told us his bile duct and tumor on top of the pancreas was cancer.  In July he had a Whipple Procedure done by a Dr. Fernandez., phenominal Dr.  The Dr. took part of his stomach, 40% of his pancreas all of his gall bladder and 31 lymph nodes, two had cancer.  He was in the hospital for 10 days, he ended up getting an infection in his incision so we were there a little bit longer.   Well, my husband has had 6 treatments of chemo.  He goes every Wed. for 3 weeks a break and then start up again.  His incision just healed this past week.  We met with the oncology radiation Dr.  They hope to start chemo./radiation in Nov.  After three years of retirement my husband got a job valet parking at a hospital and loves it.  He is now on a leave from work.  I work full time, 2 eve'.s a week also so I can get my husband to chemo. on Wed.  That does work well, it is hectic but easier then trying to get family members and then when one can't make it and work out getting someone else to take him. We also have a 14 yr.old boy who is busy, busy with sports and such.  One nice thing my husbands daughter just had a baby two weeks a go so that is a WONDERFUL thing.  Right now though our house hold is angry.  I know I am angry and very tired and sad.  My husband is VERY angry.  My husband can do some things around  the inside of the house but that is it.  We all try to take DEEP BREATH's try really hard to let things go at times BUT with my nature I feel guilty when things have to get done.  There are somethings that have to get done before the snow falls.  I should ask friends and family BUT feel they have things going on too. It seems that Fri. and Sat after chemo. my husband gets side effects from the chemo.  We try not to make too many plans aroundthen.  Well, one Fri. we decided to go to dinner. My husband did not have chemo. that Wed. before, we thought he would be ok.  Well, he got sick and slept all afternoon and into the night. Well, my son was looking forward to this and became very upset when we could not go.  Try to explain then but would not listen so when he cooled down, the next day we explained things.  Tried to be very honest with this 14 yr. old.   Last week my husband did  not go to his football game.  My son asked where he was.  I told him he wasn't feeling well.  I now notice that every time his step dad(my husband) can't do something with us he will ask me if he is going to die.  SO,SO,SO.  VERY EMOTIONAL.  It is so-so difficult working, being there for my husband and son.  My husband is so angry as I typed in earlier. So I know I become more angry.  I have told myself that at least 1X month I need to do something for myself and not feel guilty.  My husband is not a real loving man and at times lately I have needed that. I can't change someone.  So, I have an extremely hard full time job, my husband has Bile Duct Cancer and my 14 yr. trys to deal with this.  One minute at a time is my Motto lately.  BUT I am there for my family.  I felt good getting this off my chest.  I just feel so BAD for my husband I try real hard to just go with the flow and think of what he is going through.  As I say this is just another chaper in the book.  Oh, my husband is on the chemo., Gemzar.

Your situation sounds very tough physically and mentally, but you will find the strength to do the best you can for your husband.    

My story has some similarities and I thought you might like to hear some of it.  My wife is now 54 almost 55 and was diagnosed with bile duct cancer around August 1, 2007.  We initially learned that she had some form of cancer on 6/15/2007 but the source was unknown.  The liver had lesions on both lobes and some limp nodes were involved.  It took an aditional 6 weeks and a trip to Mass. General Hospital in Boston to finalize the diagnosis.  Fortunately, the doctors there are experienced enough with this rare type of cancer to not only diagnose it but to provide their best cocktail of chemotherapy for it. In my wifes case, we are having to rely completely on chemotherapy, it is inoperable, cannot be radiated, and cannot use radio frequency ablation.

She, myself and our children were completely devastated by this diagnosis and the doctors were saying that the prognosis was for only about three months without treatment and about two additional months if treatment was effective.  After a couple of weeks of depression, we decided to give it everything we had in the way fighting this disease. Cancer tries to kill the body and the spirit.  

The chemotherapy consists of Gemzar and Oxilaplatin plus steroids and an anti-nausea injection.  She receives the chemo every two weeks on Thursday.  The side affects are a feeling of being hyper for about two days, then malice for three days then a lighting up of the side effects but in the second week there is soreness around the liver and blotting. Her primary cancer marker (CA19-9) has improved from beginning at 6,400 to 3,150 after three chemo sessions.  Normal is 0 o 35.  She is nearly through her fourth treatment cycle.

Fortunately, our doctor has allowed plenty of freedom in her treatment, and we have supplemented with Theanine, a tea extract which allows the chemo to be more effective (researched in Japan), Alpha Lipoic Acid for side effects of the Oxilaplatin which can cause numbing in the hands and feet, hearing loss, heart problems etc, and Milk thistle which is good for the liver and contains salymarin which is similar to celebrix and can impact cancer cells. 

I have come to believe that we have a combination of chemotherapy and supplements that will reduce the cancer to microscopic levels. If everything goes well, we will look for cancer vaccines at some point to finish this thing off or at least give her some quality months/years.  

If you take anything from this, it should be that cancer is tough and the only way to fight it is to make every effort to remain optimistic, research and read everything you can about this cancer, find doctors who are knowledgable about this cancer and invite the prayers of people who have a gift for praying.  Also, there are a lot of other caregivers like you and I making it through one day at a time. 

My best wishes. 

   

     

 

 

 

 

I THANK YOU  for sending me your story. 

I have been looking into NATURAL things too.  My husband has been somewhat reluctant.  We are seeing a FANTASTIC Dr. and Nurse Practioner who are very open to things.  I will be talking with them about that.  It is great that you and your wife are looking into everything.Ofcourse we would and are too.  All of us are not going to give up the FIGHT.

 My husband is also on a steroid and the anti-nausea meds.  He was put on those two drugs two weeks ago.

Every week seems something new,  as I say "Another New Chapter In Our Book" Besides dealing with this illness, last week my husbands best friend also died of cancer.  So the Roller Coaster of Emotions that he has had last week and this week is TRMENDOUS.

So some of the things you are dealing with we understand.  It is nice that we are able to read this and give each other some info. and/or support. 

 WE BOTH WENT TO ONE OF THE BEST HOSPITALS IN THE COUNTRY, SO THANKFUL.

This site helps us find others that are going through similar things.  I will definately think of what You ALL are going through.  Our Prayers are with your wife, yourself and your children.

Please,  All Of Your Take Care.