fearful of the future

After hearing about the passing of Ted Kennedy after a 14mo battle of stage 4 of and then Patrick Swayze after 20 months of stage 4 I am becoming more and more fearful that my husbands life is coming to an end soon. We are in our 21st month after hearing "inoperable stage 4 cancer" and I see him slipping away more and more everyday. He is not "living"... he can not be left alone, he can not drive, and he has to be reminded to eat, drink, take meds, shower, etc. But he is a fighter and I know thats why hes beaten the odds over and over... The docs told us they didnt think he would live 8mo when he was diagnosed. He is on a new clinical trial that has kicked him to the curb and back with just 2 rounds in 4weeks. Two months ago you almost couldnt tell he was sick... but now, he almost seems "drugged up" or "drunk". He is on high doses of pain killer but needs them. He slurs his words, forgets everything, walks like hes 80 (hes only 45) and would be sleeping all the time if it werent for our dog. He loves taking care of him and snuggling with him. He scans next week so we will have a better idea of whats going on. He has decided if the scan is stable he will probably not continue with it... but is not ready to stop treatment alltogether.

 I'm not sure why I am posting - maybe looking for any answers about what to expect from here on out... ??   How do I prepare for my future without the love of my life... ??

 

On 9/16/2009 2caret wrote:

After hearing about the passing of Ted Kennedy after a 14mo battle of stage 4 of and then Patrick Swayze after 20 months of stage 4 I am becoming more and more fearful that my husbands life is coming to an end soon. We are in our 21st month after hearing "inoperable stage 4 cancer" and I see him slipping away more and more everyday. He is not "living"... he can not be left alone, he can not drive, and he has to be reminded to eat, drink, take meds, shower, etc. But he is a fighter and I know thats why hes beaten the odds over and over... The docs told us they didnt think he would live 8mo when he was diagnosed. He is on a new clinical trial that has kicked him to the curb and back with just 2 rounds in 4weeks. Two months ago you almost couldnt tell he was sick... but now, he almost seems "drugged up" or "drunk". He is on high doses of pain killer but needs them. He slurs his words, forgets everything, walks like hes 80 (hes only 45) and would be sleeping all the time if it werent for our dog. He loves taking care of him and snuggling with him. He scans next week so we will have a better idea of whats going on. He has decided if the scan is stable he will probably not continue with it... but is not ready to stop treatment alltogether.

 I'm not sure why I am posting - maybe looking for any answers about what to expect from here on out... ??   How do I prepare for my future without the love of my life... ??

 

 

You have to take each day as it comes and do your best to stay strong.  Pray, love, and hope.  Do worry about the hope part.  Hope is an involuntary reaction. 

I know how your are feeling.  I have been there and my family.  I am so sorry you have to go through this extremely sad and awful experience.  I will pray for you and your husband.  Other people will not understand the pain you are going through.  It gets hard after awhile because you just want to scream from the mountain tops. 

 

Thinking of you,

Jillian S   P.S.  I lost my mom at 48 years old and my parents were married for 30 years.  I am an intensive care nurse ( I took care of her) and my mom was also a nurse of 26 years.  I just want you to know I somewhat understand what you are going through.  I am soo sorry.  My mom had exactly what Patrick Swazye had stage 4 pancreatic cancer.  A women that was a health nut and had no predisposing factors.  She died within 6 month's.  The difference between her and Patric Swazye was my mom being a nurse gave up.  She knew this battle would be the worst one of all and it was.  It was very sad.  The medications changed everything, but were needed.   

thank you Jillian,

I will say a prayer for your mom tonight. I'm sure she was grateful to have you there for her when she needed you the most. You are amazing to want to do that for her.

My husband, 71, was diagnosed with pancreatic cancer which had  spread  to the liver Stage IV, on May 18th, 2009.  We began chemo and Tarceva immediately.  Everything was going well then the bottom fell out.  I researched and checked out all I could, but the facts were the facts.  He passed away on July 5, 2009.

 Looking back I hope that I didn't give him a false sense of reality.  Although I know that deep down we both saw that this was coming and coming sooner than we had hoped....without being morbid or weepy, we expressed our respect and gratitude for each other and said things that might have gone unsaid without this illness.  

These times are painful for everyone....Just be there and know that you are his caretaker.  There is time for rest and crying later. Cherish every second.

May God bless you and may your husband not suffer.

Braker,

I am so sorry about your husband. I believe that God gives us as much as we can handle and that he has a reason for wanting some people sooner than others. Even tho we dont agree with it, we have to believe that they are in a better place when it happens and they are not suffering or in pain any more. I still dont like it but I have accepted it. Its still very had to understand even with the acceptance.... if that makes any sense.

Prayers to you and your family. And especially for your husband.

I don't have any advice really, but I wanted to tell you that I am so impressed with your husband's fighting spirit. I've seen so many people give up in the very beginning instead of fight, and even though there is no right or wrong in this situation I'm still in awe of those who fight to live. It is so scary to see our spouses go through all of the treatment, meds, scans etc. etc.... as you know it just keeps going. All we can do is hold their hand and try to absorb some of the pain. I don't know if there is a way to prepare for life to go on without....without the person that is your life, the person that you've been fighting for. I just can't imagine that we can properly anticipate that. You and your husband are in my thoughts, Amy •husband diagnosed with stomach and esophageal cancer in July 2005, stage 3b•

Thank you Amy. I am touched by his determination and his will to fight everyday. I know thats why he has defied the odds and is still here  But at some point we know that the fire in his heart will go out.... and I see it fading slowly now.  Good luck to you adn your husband and thank you again for reaching out to me.

Oh Christine,

It is with a heavy heart that I read your post tonight. My thoughts and prayers are with you guys every day. I know what a burden this is on you in particular, I just don't know how we will continue on without the "loves of our lives". I do know, however, that life will continue on and the heartache will be there for a lifetime. It is our duty to continue on the good works and the loving inspiration to others as we are able. You can do this.

As I believe we are nearing the end of the effectiveness of our third line of chemo for Rick, I am very curious as to what drugs your husband is taking in his clinical trial. I would most appreciate that info as we are now getting ready to look into a possible trial and that information might help us make a more informed decision. It sounds like your husband's quality of life has taken a significant turn for the worse on this trial. Like him, Rick is very willing to undergo some clinical trial studies, providing they do not alter his quality of life. We too are not under any misconceptions about this disease, and the reality of living with this disease. However, we have made it 32 months now, and while the last month and a half have probably been the worst since we started, we still have been very blessed. I hope you can find it in your heart to share that information.

Try to live every day for the blessings each day brings as there is always something beautiful in each one. All you can do is love and support your husband to the best of your ability. Remember to take some time out for your own sanity too (that's the hard one for me to do, but great advise anyway).

Big Hugs to you both...........Scott

Hi Scott,

Thank you for your prayers and advice... It means alot to know that others are puling for us, like we are for them. And everytime I post something you are always there with great advice, a listening ear and alot of heart. So, thank you!

The trial my husband is on is at Dana Farber in Boston. I am not sure that it is available anywhere else right now. Its a phase 1 trial with only 12 patients.

The top of the consent form reads:

   Protocol Title: A phase I Dose-Escalation Study of the safety, pharmacokinetics and Pharmacodynamics of the Cyclin-Dependent Kinase (CDK) Inhibitor SCH727965 Administered every 3 weeks in subjects with advnaced malignancies (PO4630)

I dont think it will help you, unless you move to Boston... but its something to look into. But I must say, out of the 3 chemo protocols we have been thru over 21 months this one is BY FAR the worst, hardest and most grusome to deal with. I dont know if its because of the progression of the cancer or that the chemo is just so strong... but we are seriously considering going off it no matter what the scan results show (unless of course there is a HUGE decrease - which we dont anticipate).

We are taking things day by day but its still very hard to see him go from being at the beach all summer, happy, healthy, eating, drinking, enjoying life to a 45 yo guy who looks, walks, and acts like hes 80, cant eat anything without vomitting, slurring his words, and forgetting everything he did in the last hour. Hes dropped another 8 lbs in the last 2 weeks. I am dreading the scan and what will come out of the doctors mouth after...

But I am trying to be strong for him and my kids. I tried to do something for myself today and felt guilty so I came home... There will be plenty of time for me... later.

Hello 2Caret,

Your letter sounded just like something I would have written about 19 months ago.  My husband Mike was diagnosed with stage IV stomach cancer in 2005 and lived for 3 years.  Just at the 2 year mark, the doctor wanted to use the "C" word - cure - but the following month, it showed up in Mike's liver.  He fought so hard for 3 years; it was not quality life.  Watch TV, sleep.  Vomit, food getting stuck, he looked 80 years old and walked like it.  It robbed my Mike of everything.  Yet, he did not give up.  Today is 19 months that my Mike died.  I miss him so.  Yet, life has gone on without the love of my life.  They fought so hard to live, we have to carry on.  It is a testament to their brave valiant struggle.  We know we will be reunited again; until then...

God bless you and your family,

Diane, Mike's wife