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Where did our hope go?

Brenda Bricco's picture
Brenda Bricco
Posts: 550
Joined: Aug 2011

Hi Everyone,

I have been quiet lately, it's just been tough times.

Dennis started his Folfiri with Avastin and is feeling pretty good but I think the chemo is having a effects other than tireness and nausea. Within a week of starting chemo he has screamed at me several times, told me that I am vendictive and selfish and had a break down at a family dinner. He says things that I never dreamed I would hear coming from his mouth. My health has suffered, I have had to go to ER and clininc couple times and am on meds for high blood pressure.

Dr. Doom sent him to an appt with a pallative care guy Friday and the jerk told him there is no hope and that he should wear a DNR band (they out one on him before he left). I get it, he is stage lv and there is no cure but he is doing really well and feels good. The pallative care dr even told him 3-4 times that he can't believe how good he looks. Dennis keeps asking me if they have told me something that they haven't told him because of how they keep talking about the end of life. I am blown away that he thinks I would keep something like that from him.

I don't know what to do, I am alone most of the time and seem to be the last one on his list to spend time with. 

 

 

jen2012
Posts: 1188
Joined: Aug 2012

Hi Brenda...sorry you guys are dealing with this. Is he on a steroid with chemo? Im sorry hes taking it out on you. Does he have a living will...dnr order?

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

when Dennis is still on chemo?  I don't understand that.  If there is still a chance for the chemo to shrink things (and I'm assuming there is, or why else would they have him do it?), why not maintain a more positive attitude?  When you are up walking around, talking, doing tx, etc...there is still hope.  And doctors shouldn't try to take that away from patients.  Really makes me mad.  

And I too would be concerned about medications playing a role in his behavior, especially if he's on steroids.  Those are notorious for causing many problems.

I'm so sorry for you both,  Brenda.  Just breaks my heart that the two of you are going through this.  Do you have anyone around who can help, maybe give you a break?  Being a caegiver is such hard work, somehow you have to find a way to take care of yourself as well.

Sending strength and hugs your way~AA

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Brenda, I am stage IV and i have been fighting the good fight for 4 years and i have had my share of crazy out burst, Chemo does come with a lot of stress and some meds have streriods in them, you can request these be cut back.  When i have my chemo I let everyone know not to cause me to much stress, this does not always work,  You can always say to your husband, I realize you are very sick, i am here to help you but i don't have to put up with you being nasty or mean.  Most of the time he probally does not realize what he is doing and this will let him know you care but at the same time you are calling him on his bad behavior in a calm and understanding way.  As far as hope, I have found that hope is what you make of it, we all have a chance of living for along time or a short time, and cancer is not a definate death sentence, my Doc says I will be on chemo for life, how long that is no one knows, stop worry about it and start living, simplfy your life by selling off things that are cluttering your life, let go of obligations that have little or no benifit to you, let children and family menbers know you welcome and accept their help not that you expect it, and realize staying calm, stress less, and will improve all of our chances.  There is going to be times of dispare and loss of hope but take them as they come and realize you, and your husband are still here, embrace and go on. 

that is the best we all cando.

Penny 

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

but I am glad you posted in tough times because we do care and want to help or, just be there for you. It sounds to me that it may be a wake up call or reevaluation of medications, doctors, your health situation and his frame of mind. You are both going through so much that it becomes overwhelming. Try and do something that you both enjoy.....maybe dinner out at your favorite restaurant? Or something that you enjoy by yourself. Shopping is sometimes uplifting for me, probably because I don't get out much. Thinking of you and hoping things get easier ......~ Ann

Vancouver
Posts: 16
Joined: Mar 2013

Hi there,

I am quite new to this board and have only posted a couple of times, but when I saw your post, I just felt I wanted to send you a few words of encouragement.  You seem like a wonderful loving partner and I'm sure things that were said in anger weren't really meant to hurt you.  I imagine it was just frustration.  I think dealing with a cancer like this creates a lot of stress for everyone and people don't always know how to deal with.  I've seen my normally gentle and kind dad bark at my mom on several occasions in a really mean, hurtful way and SHE'S the one who has the Stage IV cancer.  Try to find peace in the fact that you are doing everything you can to help him.

As for the palliative care Dr., I was very direct when I accompanied my mom to her first meeting with the palliative Dr (a couple of weeks after beginning chemo).  I told the Dr. that we understood very clearly the nature of my mom's diagnosis, but since she was doing so well and having such a great response, we really wanted to concentrate our efforts on doing everything we could to keep her well as long as possible and that we would consider the things they could offer from a palliative care perspective when the time came for it.  As far as we're concerned, we've just begun our fight and aren't ready to plan the end until all options have been exhausted--hopefully a long time from now!  You and Dennis may want to consider having a similar conversation with his palliative care Dr., where you are clear about what is and is not helpful for you at this time.

I wish you all the best and hope things get better for you.  He is very lucky to have you by his side.

CT

 

 

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Read where you said D is "starting" Folfiri...

Now, of course, steroids can be a part of the problem for any of us...but since he's done chemo before, he's already been on this...and you've never talked like this before. I believe it was the Folfox you guys did last time.

And now...we're introducing Irinotecan into the mix...

Now, I can honestly tell you from my own personal experience, that Irinotecan turned me into a "Dr. Jekyll & Mr. Hyde"......I mean scary stuff...I hated who I was but it turned me into a literal monster...I couldn't stand who I was and how I was acting....but that particular chemo hurt me very badly.  (detailed my experience in the book).

It made me sick 28 days of the 30 we have in each month for the entire six-month regimen of that part of my treatment program.  So, for me, there was absolutely no life at all...I felt so bad, I couldn't even sit up on the couch and watch tv with my wife....some nights if I slept all day, I might could give her one hour of Zombie time...but I was mostly comatose and too physically sick to respond or engage with her.

My wife spent all of her time alone too...she didn't know what to do...and she was the last one on my list too.....I couldn't even manage hygiene I was so decimated. 

And of course, my wife has had alot of that during our 9-year fight with cancer...and 3x with cancer during that stretch.

I said things that I was not particulary proud of and regretted...and she did too in response...it made us question our marriage...and I know we looked at each other and just wondered who the other person was staring back at one another with such disgust....

Cancer is a wrecking ball....

The negative output from the doctor is uncalled for though....to tell him to wear a DNR bracelet is unforgiveable...I struggled mightily with that kind of decision with my dad....and it was the hardest thing ever, but I was following out his wishes...but it was very hard...and there you could see the end and knew it was coming...

D is another story still...

Now, Brenda....here's something I wanted you to know. 

Cancer teaches us all to talk out of both sides of or mouths....what I mean is that we can say one thing one day - and then another thing another day....but on each of those days, we believed the position that we were holding.

Like for you, when you thought  all was clear and it was behind you...it was "God is Good..." etc.

I've had alot of struggle with faith my whole life...and when I read that, I was thinking that God has nothing to do with it...we know of people who perish in all kinds of ways, who are the most ardent and fervent believers...

I always dismissed it...

I've done alot of studying with Dr. Stanley the past six-months again....things changed for me a few months ago when I "surrendered" my life fully this time and took my hands off the wheel.....I see now how I thought I was driving the bus by myself and did not need a higher authority to help me...

I see now that while God may or may not save us because we are afflicted with a disease, that He is "present" based on the Scriptures and the way that the Dr. S. has explained it. 

And I tell you right now, HOPE can be so fleeting...it's slow to come - and quick to leave...

When we're in the midst of fighting, it's so very hard to find Hope - and to keep Hope alive...and that's because when you're mired in it up past your elbows, it's a litmus test that is pushing our envelope past the point of what we want to accept. 

When you're out of the fight and have time for reflection...that's when you reap the rewards of the personal growth that you gained from whatever life lesson was presented to us.

Long story short...it's always easy to see the good when the struggle is behind us....but quite another to see the good when you're in the fight/depression mode.

"God is Good"....can take on new meaning during those times of trials....

As a strong woman of faith, who I've heard you tell all of us that God has gotten you through everything in life...I would ask that try and hold onto that...though I know it is hard to do. 

I will say a prayer for you both....it will actually mean something now from the transformations I'm undergoing this year.....

Hope has temporarily run out on you....be careful here...with a vacancy like that, it won't be long before Depression, Despair and perhaps Hopelessness itself will show up on your doorstep trying to rent the room that was recently vacated. 

It all comes in cycles, Brenda....you're on the downswing right now...things will cycle back through. 

Treatment is tough, Brenda...and Dennis may be examining his own mortality right now, especially in lieu of the 'support' his medical staff has been giving him.

And thoughts of mortality can lead directly to anger....which then manifests itself outwardly towards you through Dennis's venting program. 

But, he may need to get mad right now...sometimes anger can be good, because it redirects our energies towards the good when we can get it there.

Accept this as part of the journey...and perhaps you two can have a talk about your feelings.....this was an area that I craved with my wife, but never got....but thankfully the board was a place where I could seek refuge and turn my anger outwards towards helping people just like you. 

As you are so fond of saying..."God's Blessings..."

I just wanted to remind you that you are the same ol' Brenda and you are both in a tough spot right now....

Faith is one of the toughest lessons that I'm still trying to learn....I know that your faith will bring you through. 

-Craig

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

 

Oh Brenda, I'm sorry that you are both going through such a terrible time.  And I'm simply horrified that the Doctor would put a DNR Braclet on him!  Did you take it off of him!?  I can't imagine wearing a braclet that basically says to me every second of the day - "I'm going to die soon."   It's unimaginable to me that he would do such a thing.  My Rick always took a little comfort in knowing that I'd never let him go unless there was absolutely nothing left to do to help him.  He trusted me, not the doctors, to make such a final decision.  My goodness, I am so upset over what that doctor did to you both that I could just cry.   :(

Take care, ((HUGS))

Cynthia

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Ditto what Cynthia said...take that bracelet off of him if he is still wearing it.  I am so sorry that you guys are having a hard time rit now. 

Gentle hugs...

alex

thxmiker's picture
thxmiker
Posts: 1204
Joined: Oct 2010

WOW, even my Doc in Phoenix was not that bad.   

 

First, we are sedning our thoughts and prayers for you to find a good Oncologist and some hope.

 

Have you tried, New Hope, Cancer Centers of America, Dr. Lenz @ USC, Dr, Sugerbaker DC????

 

I got the bad news from Banner which is part of MD Anderson.   I figured MD Anderson should be a decent Cancer program.  NOT      They told me to try Dr. Lenz @ USC.    Dr. Lenz was very positive and brought us good hope again.

 

Find another Doctor and Medical System that does not give up on their patients.

 

Best Always,  mike

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

my husband was so short tempered.  After finding out he had cancer, he was still short tempered with a added dose of frustration! His onc recommended the anti-depressant, Zoloft.  My husband put it off for 3 months and then decided, what the heck, let me give it a try.  It has done wonders and he said he should have gone on it a long time ago.  His chemo treatment is also Folfiri and Avastin.  He takes the day off from work, goes every other Friday, and has the weekend to recoup.  He feels tired and has nausea most of the weekend but is able to return to work on Monday.  And, he has nose bleeds off and on.  4th infusion was last Friday and most likely will have a CT scan after the 6th treatment.  

As far as what was said and the dnr band, I think that is wrong in so many ways.  

Take care of yourself and my thoughts are with you,

Ellen

Brenda Bricco's picture
Brenda Bricco
Posts: 550
Joined: Aug 2011

Thanks to everyone for your kind thoughts and a special thanks to Sundance for letting me know how you have perceived my previous posts. I have never wanted to hurt anyone with my faith or by praising my GOD when things are good but it seems that the way I sign off has miffed you. My knee jerk reaction is to apologize but after I think about it I would like to extend the most sincere invite for you to take a flying leap and kiss my arse. ;)

Sorry if that sounds ungrateful... but I just think you could have private messaged me if you wanted to throw something in my face or suggest that I am "talking out of both sides of my mouth". The truth is that I don't know what I have said in the past, I just speak from my heart and say what I feel at the time; if I have contridicted myself then I do apologize to everyone. I am a kind person or atleast try to be at all times but I am offended by your post. Who knows, maybe I will read it later and see it in a different light but for now it just seemed like a mean things to say.

That will teach me to open my mouth...

GOD is still good!

GOD's blessings...

Brenda

Trubrit's picture
Trubrit
Posts: 1343
Joined: Jan 2013

We are here for you, wether or not we believe in your beliefs. 

You and your husband need us, and we need you. 

I certainly hope that you continue coming here regardless of others feelings toward your posts.  

I did read Craig's post, and didn't see anything that was accusing. I know how it is when we're totally stressed out, which I think you are, so I know Craig will understand your misunderstanding. 

May you find comfort somewhere. You both definitely deserve it. 

God bless!

jen2012
Posts: 1188
Joined: Aug 2012

Brenda...i think you read Craigs message wrong. Im not going to speak for craig...but im not seeing what you are seeing. I dont want you to be further upset...and i really dont think Craig does either and im sure when he checks in he'll confirm that he wasnt trying to be mean or rude. Hang in there Brenda.

Chelsea71
Posts: 1168
Joined: Sep 2012

Brenda, so sorry you are going through this bad time. Please get rid of Dr. Doom. Who needs that crap?

I agree with Jen. I think Craig was only trying to be supportive. I read his post several times and I honestly don't think he was throwing anything back at you. In many of his posts he has made comments about his own faith and belief in God. I really don't want to speak for him but I strongly suspect he was only trying to remind you of your faith (as we often question faith during difficult times) and suggesting you that your belief in God will guide you through this difficult time.

Sorry Craig if I'm putting words in your mouth.

I know how difficult this sort of thing can be. When Steve was in the hospital several weeks ago, his mood was quite foul. I found his comments and behavior to be very hurtful. He was not himself and it scared me. I felt like I didn't even know him. A very kind CSN member reached out to me and reminded me that it is not Steve talking, it's the disease. Dennis is likely feeling scared, tired and sick from the chemo. You are his safe place to land. His safety net. Being a caregiver is a tough job. It still seems strange for me to refer to myself as a caregiver. I miss the days when I was just a regular wife. Lol.

Take care

Chelsea

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Hey Brenda, I was starting to respond to you when I read your response to Craig.. I don't think he had any ill intentions.. please don't take his comments that way... This is a tough journey and don't we all know this.. Faith no matter how strong is hard to maintain constantly...  I know I have and I bet I am not alone but there are times when I question the faith we possess. I believe it is there even when we appear to have lost it.. (I think that is what Craig was attempting to tell you). It is like the ocean - it ebbs and tides.. and it is easy to be upbeat and positive when things are going well and when they aren't darkness and dispair comes quickly and easily...

Now I truly condenm that dr to sending him to a palliative dr.. what were they thinking!!! I get enraged as a stage 4 that is walking and breathing,, working and loving and faithful to my God.. when I hear the term Quality of Life... and when the effects of chemo take over me.. I can feel Damion coming thru me... Hell havth no fury like a woman with stage 4 Colerectal cancer..... 

So my message just try and hang in there.. this too will pass.. and btw... Craigs posts are so long that I loose track most of the time what he is talking about that I read half and skim the rest... I give you credit for having read the whole post.

All my love to you and your familiy and hubby and may God Bless you all and keep you... Donna

 

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

 

Dear Brenda,

You are obviously extremely upset and angry at the moment, which is completely understandable today.  However, I truly believe that you are reading your own anger into Craig's post.  I am quite positive that Craig in no way shape or form intended to upset or insult you.  What I read from his post is someone who is reflecting on his own beliefs and sincerely hopes, and prays, that you will continue to have faith even when your prayers seems to go unanswered as they relate to this disease.  Please re-read his post when you feel ready, and I'm sure that you'll find that he is sharing his love and support for both of you.

All my best,

Cynthia

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

My knee jerk reaction is to apologize but after I think about it I would like to extend the most sincere invite for you to take a flying leap and kiss my arse. ;)

I understand that you are having a difficult time.  I would venture to say that everyone who posts on this board is.  Seems everyone, including Craig, has been supportive and tried to offer kind support. Please reread Craig's message when you have calmed a bit.

Just a reminder ... the forum is made up of many individuals of differing faiths and also non-faiths.  Sometimes putting too much emphasis on one's religious experience may be offensive to some members.  It is very different here than within our personal social circles where we may speak freely because we understand the belief systems of those around us. The reason the board requests this type of consideration is so that all members feel accepted and respected.

I am sorry for your present troubles. As a caregiver for my husband who has advanced cancer, my heart goes out to you ... it is just very rough. -- Cynthia

 

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

I understand what you are saying Cynthia,, but I think faith when professed in  post is not always religous faith that we are talking about so openmindness has to be possessed by both sides.

Faith is sometime faith in ourselves and at other times God and still other times our DR's and caregivers.. 

Keep the Faith friends...

Donna

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

call attention to the terms of the board because we were getting sort of close to the point where someone may flag a post because of its religiosity. That would not be helpful to an individual like Brenda who really needs to have support right now.

Yes, I do embrace both sides, but the rules remain and we all abide by them here to keep the peace. -- Best, C

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

 

Ok dear friends...I kindly request that we suspend this particular topic since it appears that this post is now going in a different direction.  We certainly don't want to start up yet another religious debate.  We all know what will happen in that case. 

Love you all my friends,

Cyn

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I'm sorry that my post hurt your feelings.  That was not my intent and I did not mean anything in a bad way. 

I was not critisizing your faith or anything like that.  I was not miffed by any statements that you made....I think they hit so close to home for me, that (in a good way) it forced me to re-examine my own thoughts on faith...I wanted you to know that I always admired how you said that faith brought you through everything.  When I turned my life back over, I wanted to email you and talk about it....but knew you guys had so much going...

I just always admired how folks have strong faith to help them get through life's challenges.....and I think I wanted that in myself...and seeing it in you really made a difference for me.

I've struggled with my own faith and I can remember vividly at times thinking that I had been abandoned.  What I meant by thinking that faith did not (for me at the time) seen to have any bearing on the friends I have seen here over the years pass.  Many had very strong faith and loving families and many reasons to be here...

Cancer is just so hard to fight the first time and recurrence always changes things.  Perceptions and attitudes can change. 

I was thinking that God did not spare us from cancer any more than the family that may have perished by a suspected drunk driver on the way home for church.

And I've been examining things for awhile now...and in the post, I said that I had "surrendered" my life again...so I'm not against religion or anything.  Dr. Stanley helped show me the way the other night in one of his messages. 

In fact, he was talking about cancer in his message....and he said that we are not always healed....but that He is 'present' with us at all times if we believe.

And so, what I got out of that is that....He is with us to help...and we do our part. 

I also talked about how hard my wife and I have had it 9-years...trying to relate to the distance you feel right now....and I talked about how Folfiri changed my personality into something else. 

I was not trying to hurt you at all....I was just trying to talk to you....I know you've been edgy lately from what you have said...and I know I took a risk by reaching out to talk to you....but I felt you hurting and thought it was worth the chance. 

I logged on this morning and saw a message from someone and just wanted to apologize to you if what I said hurt your feelings.  You've read enough about me to know that I try and help.  And that I care for people....and that I care for you.

I've spent just every day up here for the last 4-years up here trying to help folks. 

I know that you are a strong woman of faith....and it just stuck in my head how you told us that your faith had brought you through all of the tough times and trials in your life....and I just wanted you to feel that way once more. 

I'm truly sorry, Brenda...and hope that one day you can forgive me. 

I'll keep my distance and respect yours as well....but will still be pulling for you and Dennis to do well:)

-Craig

 P.S. Brenda, talking out both sides, as I put it....Cancer is so ambiguous in its nature that one day we can see things one way - and then the next day, see things so differently, depending on our emotions.

That comment was misunderstood and I wanted to clarify....I talk out of both sides of my mouth every day up here.....one day I see Hope....and another day I can't seem to find it. That's all I meant by that.

I'm sorry I was so misunderstood....I try so hard to to avoid that.  I understand how you are upset with me.  It hurts me to think that I hurt you. 

I've got to get back to work now....but I just couldn't move past this until I spoke to you again. 

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

especially when emotions are running high.  I actually was reading back through the thread, trying to figure out which post was problematic.  I thought something had been deleted because I didn't see anything that seemed offensive.  I totally didn't get that it was Craig's post that was upsetting...I thought he was being supportive.  And I suspect he thought he was too.  I wish we were all able to sit down together in a room and talk.  I think that 90% of these conflicts we have on the board are a result of virtual miscommunication and would never take place in person.  And if they did, they could be alleviated with a hug.  AA

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

I didn't see the conflict either... I think it is a misunderstanding of terms.. \

People need to chill .... we are here hoping to give and find support....

Love you all and Brenda.. Hang in there...

Nana b's picture
Nana b
Posts: 2777
Joined: May 2009

I don't care how sick he is,kick his ass.

 

I'm stage 4 and I never lost my appreciation for those around me.   Tell him to tough up of he I'll just be doing chemo for nothing  attitude is important. Big hug to you. 

Some humor to make you smile. 

 

 

Luckygirl2
Posts: 308
Joined: Mar 2012

Sometimes those of us who have the cancer need to be reminded that we aren't the only ones with our hearts hurting...my poor husband got snapped at several times during my treatment.  It was like my mouth was opening and someone else was saying the words...   we forget that you guys taking care of us is hurting as well.  As for that bracelet, I would take that braclet and ask the doctor who had it put on how he would like to wear something that screams, oh, by the way, I'm dying so just let me...  geez..  I'd lose that doctor as well.  By blood pressure is going up just thinking about it.. 

I don't know your situation but you need to steal some time for yourself.  Happy pills for him would not be a bad idea either...I am much happier with mine :)

Thoughts and prayers to you.

 

Debbie

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