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Not Going for Treatment

crazydays2
Posts: 8
Joined: Aug 2013

I am new to this Discussion Board and I have never been on one before. I really do not know what to do, as my husband is refusing to go for treatment for his CLL. We found out that he has this the day after coming home for vacation.  His WBC count is 80,000, lymph nodes are all swollen, lost 81 lbs since this February, very tired, swollen spleen and other things.   I am devastated for him. We have been friends since we met in highschool at age 15. We are going to celebrate our 16th anniversary next month and we have 3 grown children.                  

My dilema is that I love him with all my heart and it's killing me to see him waste away. He is definitely a man who believes he should take care of his family and he can't. We are both 47 years old and he has been seriously ill since age 19. He has now decided that he will not go for treatment as the other illnesses will never be cured. He has lived in constant pain for many, many years. He got a staph infection that went to his bone, will never be cured. So he has been house-bound for the last 7 years. His life is sitting in the house due to the fact that his legs are so painful.

I get that he just doesn't want to fight anymore. But honestly, my heart doesn't get it! I go from being mad to crying to disbelief to...well all over the map. I need help because I feel like I am going crazy.

I try not to live in sadness all the time because I don't want to make it harder for him.

I mean, it may be hard for me to watch him but I know it's much harder to be him.

Can anyone just let me know if I am wrong or crazy or whatever?

All I know is that I love him and I want to do the best for him. Thanks for listening

Jlamomof2
Posts: 13
Joined: May 2013

You are not crazy; you are stressed!  (make sure you are getting enough vitamin B!) My only advice is to try to live in the moment. Try to enjoy each day.  My experience has been with acute, not chronic, leukemia, but the treatment for that made hubby WAY more ill than he was feeling before and took several months to have any semblance of normal.  So if your hubby doesn't want to go thru treatment, just try to appreciate the time that you DO have.   Good luck!

crazydays2
Posts: 8
Joined: Aug 2013

You don't know how much you have done for me already. Honestly, Cancer is the scariest thing I ever dealt with. I was reluctant to even go on this discussion board, I was nervous. But I think this may be the best thing for me. I hope I encounter more people like you. There are no support groups in my area. I do have wonderful family though and friends. I hope I meet more people like you. Bless you!

DevonLea
Posts: 22
Joined: Aug 2012

Hello there. I am 30 year old survivor of ALL. I am still in treatment, but it is much much easier now than it was with the harsh chemo I was getting last year. I have had an interesting experience with chemo, but my experiences seem very easy compared to those of others. I know it was hard to be a cancer patient, I can't even imagine what it was like for my husband to be a care taker of a cancer patient--twice. The first one was his father, who he lost to lung cancer several years ago, and then to his new bride. I don't know how much my experiences can help you through what you are going through, but you can ask me whatever you would like to help ease your ailing heart and I will help in whatever way I can to make this a releasing place for you. I love this site, I have met so many wonderful people who have helped me through my darkest hours. I hope it can be the same for you =) --Devon

crazydays2
Posts: 8
Joined: Aug 2013

Thank you for the positive thoughts. Really, every bit helps - but I guess I don't have to tell you that. One big question I have is how can someone just let go? I see every day how he feels. I can't even imagine being him. But in my heart, I don't understand why you would not even try? you know, I just don't get it. I am trying. I know I have to respect his wishes. But I am mad inside. But on the other hand, I love him and want to make him happy. Just going crazy inside! Am I wrong for thinking like that? I am just so sad and cry too much. I don't want to be like this. What do I do?

Jlamomof2
Posts: 13
Joined: May 2013

I think it probably has to do with quality of life issues.  It sounds as if your hubby has had a rough go with his physical health.  Maybe he is content with the life he has been able to live and the family he has.  I know that I was told, and feel it to be true, that during treatment (& I think this includes choosing not to treat), it is SO hard physically on the patient, but SO hard emotionally/mentally for the caregiver.  I might suggest trying to do what might help YOU mentally, whether that means an exercise program (releases happy endorphins!), a hobby or even if you need anti-depressants for a while.  I know my Dr. Offered that option for me...and hubby's Dr. Offered to him as well.

 

As hard as it is, to be able to take care of hubby, you also have to take care of yourself...physically, & emotionally.  I don't know what the weather is like where you live, but maybe just going for a walk after breakfast or dinner (depending on your schedule) each day would be refreshing?

 

hang in there!

crazydays2
Posts: 8
Joined: Aug 2013

You are right. I love him enough to say "It's okay". I just want to feel it100% in my heart - maybe I am fooling myself in the fact that I will never be 100% okay with things.

I feel almost guilty that I am having a hard time because he is the one who is sick. He is the one that is house bound and can just make it to the bathroom. I can get up, go to work or even just move with no problems. So I feel like I should not be upset all the time.

All I want is to make things as easy for him as I can. I just hope my craziness doesn' t make it worse for him. Maybe I am just worrying too much.

Honestly, this is like a nightmare I just can't wake up from.

I feel like I should not be complaing so much. But you know, even conversing with great people online, I feel like I belong here and putting my feelings out there. I hope that I am doing okay. It just seems like speaking to others with similar experiences is probably what I need right now.

I guess I will just take one day at a time.

 

Thanks! What I should be doing is getting ready for our 16th wedding anniversary...it's in 2 weeks.

dadoftwins's picture
dadoftwins
Posts: 13
Joined: Mar 2013

I can totally relate with all of your emotions.  My husband has LGL leukemia...a chronic exhausting cancer.  The doctors keep saying you live with it, don't die from it.  oh yeah?  well, please tell us how to live with it?

 

My husband is exhausted - no energy, no stamina, no will to do anything.  he saves every ounce of energy to go to work every day, even on chemo days.  He's amazing.

 

I have run the gauntlet of emotions.  why?  why him? how do we manage with twin 4 yr olds? how do we pay the medical bills?  what happens if he can't work? how do we pay our mortgage? what if the chemo (plan C in the medical plan) doesn't work?  will he EVER feel good again?

 

plain and simple:  cancer sucks.  bad. 

 

and there is so little out there for caregivers.  But on this I can help you.  YOU MUST CONTACT A PSYCHOLOGIST OR THERAPIST!!!!!!!   there are many out there you specialize in life-altering disease diagnoses, trauma etc.  and this is trauma. 

 

I feel for you.  Try to take some comfort that others are praying for you and your husband to make good choices.  Ones that BOTH of you can agree on.  And to find some peace.

 

And I tell you what... if you haven't read The Last Lecture...order it now...get it from the library and a box of tissues.  It really is uplifting (after you cry your eyes out).

 

I'll be here.

 

amy in columbus oh

 

crazydays2
Posts: 8
Joined: Aug 2013

Amy, I don't even know you, but I value you already. You give me encouragement and I think you need it more than I do. You know, I wish I could just be grown up about this and just appreciate what I have.

But honestly, I want to just scream and kick and whatever. i don't do that. Really a piece of me dies off with every little thing that goes on. I try to keep it in check because my husband gets upset when he sees me like this. the only thing is that he can tell right away without me saying anything.

And today is our 16th Anniversary. We did have a great dinner.

You and your family are in a very tough situation. I wish there was some way I could do something for you. The only things I can do for you is offer a big hug and add you to my prayer list.

I really hope we keep in touch.

God bless you and your husband

Nanc

 

dadoftwins's picture
dadoftwins
Posts: 13
Joined: Mar 2013

Hi Nanc,

 

Sorry I am ten days late...but I hope you had a nice anniversary. 

 

Life here has been chaotic - par for the course.  I've had bronchitis all September...the cough just won't go away and I'm exhausted.  and then I look at Jim (husband) and I get my butt outta bed and carry on. 

 

This cancer is the fifth member of our family.  Constantly with us.  Oh how I wish it would just go away!!!!

 

two weeks ago the docs pretty much thru up their hands and said they needed two weeks to figure out what to do next.  Such confidence.  (sarcasm).  So Jim continued the Campath treatments and we watched as his blood counts plummet and the LDH continues to rise.  And I can't find any information about what to do after Campath.  The wonder drug that all the oncologists say has such great results.  Well, crap on that. 

 

I guess we are looking at blood transfusions now.  And from what I've heard, once you're on transfusions it's almost impossible to stop.  Great. 

 

So, every day I get up, make coffee, feed the girls, get them to preschool.  Do laundry, clean the bathrooms & kitchen, the usual household chores and try to keep busy.  Because if I don't, I think too much.  And if I think too much, I cry.  So to deflect the crying, I eat.  so says the 25 lbs I've added in the last 9 months.  ughhhhhh!!!!!!

 

ok - enough of my pitty-party.

Where are you loocated?  As I said we are in Columbus OH - with frequent trips to Cleve area.  and I am very seriously thinking of making an appt at Penn State to see Dr. Loughran in person. 

I would say this as parting words:  if there is something on your or hubby's bucket list - DO IT.  take out a second mortgage or line of credit and go to Europe or Alaska or Hawaii or swim with sharks or take a cruise or gamble in Vegas or go to a cabin in the Smokeys and listen to the quiet (or not-so-quiet) of nature.  Listen to some John Denver music from the 70's (Windsong is a personal fave).  Throw a huge party with everyone you know - charge it.  worry about the expense later.  it's only money. Your husband is more important.  Heal old wounds, bridge the divide, tell an old teacher they impacted his life, thank a soldier for their service, get a puppy or a parakeet, paint your liiving room a bold color, cut or color your hair, get a tattoo or a piercing that no one else can see ( not my style but what the heck).

 

Ok I hope I was able to get you to atleast smile.  I am serious about the John Denver music though.  so soothing and lovely.  :>)

 

take Care Nanc.

 

I'll be here. 

amy

614-446-0885

crazydays2
Posts: 8
Joined: Aug 2013

Thank you for the anniversary wishes! Was a great day - husband and I grilled. Enjoyed the time outside with him. Had scallops for the first time since a kid -loved them (hated them back then). 

What you said about being sick is true. Can't believe you think like me! If I have some ailment that makes me want to just feel bad for myself, I think "Look at him, he's dying. What am I complaining about?" He loves me so much that he says he wishes he could take away my pain. Really? Sometimes, he is too much.

By the way, love John Denver!

You have so much on your plate and still you think about us. Thank you.

 

And God Bless You!

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