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Cindyz's update on Stephen :-(

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Trying to figure this thing out
by cindyz » Wed May 05, 2010 7:33 am

I can't remember when I have been so tested. I don't think there's been a time. I'm trying to figure out what to do, how to be, how to think beyond today without Stephen, and I cannot. Things have been progressively getting worse, and after getting all the doctors in one room together we have our answers. Stephen can't be operated on. The risks are too great. The surgeon won't do it. He said that with Stephen's liver shutting down and his continuing decline, he feels like operating would be a sure death sentence. They all told us that the best thing to do is get Hospice and go home. I asked that the hospitalist meet with the rest of Stephen' s family to tell them; they have already been second guessing things and wondering why there isn't more to do, and I honestly don't have the energy to try to convince them or educate them. It's frustrating to have people come in at the tail-end of things and try to all of a sudden turn things around. It doesn't work that way. I've been with him almost 24 hours a day, I've seen him. All you have to do is look at him.

I am supposed to hear from Hospice this morning. We are going to ask them if they will give STephen antibiotics on a pallaitive care basis, since his doctors do say that antibiotics might help him feel better for a little while. They don't think so, but they are not sure. Stephen's scan showed that either the original perforation didn't heal, or there is a new one. There is a slight bit more of air in his abdomen. They did nix the feeding tube because of this. It's scary to think because before yesterday, we were being told that Stephen could eat anything he wanted. The GI doc was sure that the perf had healed because he said that if perfs don't heal, you know it. I remember asking him, "are you sure that there's not a leakage anymore?" and he said yes, that if there was an ongoing leakage, he wouldn't be getting better (as he was during the week last week). Either way, Stephen didn't eat anything much even though he could. He drank liquids, but not much of these either.

He is showing all signs of being septic, except for a fever. I talked to Stephen’s uncle in depth about his care yesterday (he has a GI practice in another state) and he said that when people are immune-compromised, oftentimes they don’t have fevers when they are septic. His blood pressure is still low and he’s very, very tired. They are giving him TPN because he cannot eat- another question I have to ask Hospice in addition to the antibiotics question – will they continue with the TPN at home?

I had the girls see Stephen for a few minutes yesterday. These meetings are hard for me to watch because he’s not the same person with them. Their Stephen is alive and animated and laughing and cracking jokes and teasing them – this Stephen can barely talk before he gets exhausted. I have wondered if this is the way I should have them last see Stephen, but the other part of me says they both need it, they both need a hug, a kiss, a look in the eye, even if it’s not the same.

I’m struggling with how to get past this point. I always meant to read some books or get some counseling if the signs became clear that the time was approaching, but I haven’t. I don’t have time now to read a book or seek therapy, because it’s all unfolding in front of my eyes. My question is – will I be okay? I don’t feel like I will. Stephen and I were inseparable; he and I did and talked and questioned and laughed about everything. What do you do when t that part is gone? There is not a restaurant, a shop, a store, anything…that I can drive by and not have a memory that includes Stephen. We shopped together, we went out together, we consulted with each other on everything- you get the idea. People have told me that they would gladly change places with me, even with Stephen’s cancer, to be able to experience the love that we have with each other. That statement has always amazed me, and it shows me that our bond is so bright and strong that everyone can see it. What do I do?

Watching Stephen get worse day by day and not being able to do anything about it is so hard for me. I have to be here, I won’t leave. I want to be the person he sees when he opens his eyes. I think it’s comforting to him when he’s probably pretty scared otherwise. I wish I could discuss exactly his thoughts right now, but it’s hard for him to concentrate and hard for him to have a lengthy conversation. It’s not that he’s confused, not at all…it’s just that it takes him a lot of effort to do most normal things. If I try to get into a “how do you feel (emotionally) “ conversation, he just says that he wants to be home, that he’s tired of being so tired. I can see he’s so frustrated that he has no energy. I’ve always heard about people having a certain “peace” when they knew or felt they were going to die, but I don’t see this with Stephen. There is no peace and acceptance.

So, here we are. He was diagnosed May 13 last year and most of you know that we haven’t had much good news along the way. I am finding it incredibly sad to be here, and I have found that I am so not prepared for this to happen. I try to think past the time when he dies, and I honestly don’t see myself being able to cope with daily things. I’m sure I will, I just can’t see it. He had such an energy, such a force, and combined we were, well…magic. After he was dx with cancer, we’d oftentimes turn up Dave Matthew’s song “You and Me” and sing it at the top of our lungs while driving down AIA. We thought we could do anything.

I know that this is a board for caregivers, but I am not sure that it’s primarily the place for me anymore because I feel a little awkward being so needy when most of you are undergoing active treatment or scans, or the like. Do any of you caregivers who still visit the board have any advice to give me? Can you tell me how you coped with the excruciating sadness and emptiness left behind? We always celebrated holidays and the kid’s activities with such gusto…how do you do that alone now? How do you come to grips with the great sadness that weighs on your heart and your soul? I plan on seeking counseling for the girls and myself, but this won’t be set up immediately in the next few weeks. For the time being, I desperately need to know how to get past this time.

Wife to Stephen, dx 5/13/09; 45 yo
Stage IV w/numerous mets to liver, 2 to LNs
Colon resection 5/25/09
Folfox/Avastin, Folfiri/Avastin, Folfiri/Erbitux-progressed
Lung nodules found 1/2010
Currently Avastin/Erbitux/Ironetecan
Sir Spheres 2/2/2010

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"The risks are too great. The surgeon won't do it. He said that
with Stephen's liver shutting down and his continuing decline, he
feels like operating would be a sure death sentence. They all
told us that the best thing to do is get Hospice and go home. "

A "second opinion" should never come from an associate of
the original doctor, or even one from the same town.

When a doctor says he can't do anything, it's time to find a
new doctor.... or an entirely new approach to survival.

Don't be too willing to allow "opinions" to set your destiny
or demise.

John

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Dear Cindy

That was the most honest, raw, and emotional post that I've ever read:)

I sat here mesmerized, soaking in every word of it. It was very compelling and you wrote it beautifully - one can get a sense of your anguish & sorrow and feel the hurt in your words.

It sounds like you and Stephen share a love that is one for the ages, alright. The only thing I could say here is, "Better to have loved and lost, than to have never loved at all." You've both lived and shared a lifetime since you met each other - those are memories to be treasured.

Most folks probably do envy the love you share between one another - I find that is a rare gift, if folks are really being honest about their relationships. It sounds like you were both just meant to be together. I could sit here imagining you two doing the things you described - made me smile.

Stories like these always make me sad for your children involved. I grew up without parents involved with my life, though they were living. I cannot fathom how hard it would be for a child to lose one of their parents - and have such a tremendous relationship with them. But from your post, I get a sense of how that must feel in reading your words. You sound like you have such a wonderful, loving family...that's a wonderful thing to hear.

It sounds like you have all of your bases covered - like you said, you've been there everyday and now is not the time for someone to ride in and try to fix it all. I've read many of your posts and it sounds like you have always had a good handle on things.

I completely respect your wishes on how you want to handle things. Sometimes, when the body cannot take a treatment or a surgery, that is just the case. I know if there was something more, you would definitely be the first one to do it.

I found your introspection this morning an eye-opener. You compose yourself well with all that you have going on. You are a CareGiver that anyone would want on their team and you handle yourself with the grace & dignity that many of us would like to demonstrate.

Thank you for being here and thank you for your post. I hope that whatever the outcome is, that you will from time to time, continue to come to the board. Your wisdom and experience in being a caregiver for Stephen, would no doubt, be greatly appreciated by all of us, but especially to a new caregiver coming on board. You would be able to light the way and shine the light on their situation and put a face that people could count on.

Thank you for sharing your story - I draw strength from you and am wishing you some peace & comfort during this most difficult transistion.

-Craig

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Cindy, I cannot begin to tell you how much I admire you! I've followed your every post on Colon Club and have been so touched by your dedication to Stephen and how you've stood up to numerous doctors and hospital staff, fighting for what is best for your beloved husband.

I've been praying for you both and hope that doesn't offend you. It's all I know to do.

Diane

melissaincali's picture
melissaincali
Posts: 34
Joined: Sep 2009

Hi Cindy,
It felt like you were writing my words and my life. I lost my 34 year old husband in December and we have a 4 year old son. I did Christmas 8 days later, our son's birthday 6 weeks later, my wedding anniversary last week and I am about to make it through mother's day. I feel your pain. My advice to you now, is to stay in the moment (as much as you can and I know the moments are really bad right now) and push the worries away about how you will cope after. It will not be easy at all, but you will go on because you have to. Children keep you moving even when you don't possibly think you can keep living. Please get in touch with me if you like and I can try as best as I can to walk with you through this. Send me an email on here and I can give you my information.
Melissa

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

My Stephen and I are also very close; he and I receive the comments that you mention. My husband tells me that he couldn't go on without me, but of course he can. I am his life, and everything he does is to make me happy, I know that, I have always known that. If I go, he just has to put one foot in front of the other. He has no other choice. In time the hurt will heal and I will live in his heart forever. Yes, times will be tough, I see my sister' struggles. Her husband passed away a couple years ago, but she made it. It's awkard for her, where does she go on holidays, couple vacations, many other little things that we might say, and not stop to consider that she is alone. But she knows that we don't do it purposely. We talk about her husband and we reminance when we can. We don't feel sorry for her, we just accept her life. We try and be strong for her and her kids, but we have to live for today, and we have to include Sergio in conversations, it helps to make things realistic for her. He is gone. We will all be gone one day. I know this is to the point, but I am on my lunch and just had to reply. Chin up, you can get through this. I love your words and loved to hear your story; but he is still with you now, enjoy! He will live in your heart forever.
Hugs!

Devasted
Posts: 186
Joined: Jun 2009

Cindy,

Stephen is really fortunate to have you by his side. I, too, am a caregiver and can't imagine my life without my husband. He was dx'd with stage 4 rectal cancer last May. It was the most devasting event of my entire life. You and Stephen will be in my thoughts....

Take care

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

my heart breaks for you. I shall hold you, Stephen, and the kids in the Light.
Aud

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Cindy posted this early this morning. I didn't copy the part that was meant for some friends on Colon Club regarding a remark made there:

Hopefully Stephen will go home today. We met with Hospice and really wanted to use their services, but we cannot because Stephen is on aggressive antibiotics that must be given by IV. I asked the GI doctor yesterday morning if he suggested we continue with them, and he said that if we were hoping that his perforation/infection would get better, he definitely suggested continuing on antibiotics. Underlying his comments and not spoken in the room with Stephen was the "what will this really mean to him, even if the infection clears?" question. No matter, Stephen wants the antibiotics and it is still his intention to heal and improve.

The days have passed by in a blur; tomorrow it will be two weeks and I think I've had a breath of fresh air only on occasion. Stephen: none. I went down to the hospital courtyard yesterday and brought him back a twig of ligustrum; the smell filled our room with outside life. You can get a little apathetic being in the hospital; some of the life seems to drain out of me when I'm here too long, so I cannot imagine what Stephen is feeling at this point. He hasn't walked the halls because he is too tired - the extent of his movements have been those of the bathroom variety.

Stephen is very tired and he is having a hard time speaking. I don’t know what is causing that, as he says that his throat doesn’t hurt. When he talks, it sounds as though he has laryngitis. It’s an effort, so on the advice I read on this board, we’ve made little signs…a wink is “I love you,” for instance. I talk, he winks.

I’m apprehensive about home health care. It’s going to be very hard since Stephen isn’t very mobile. I managed to give him a shower yesterday, and although we made a mess he loved it. They cannot give him IV pain meds, so yesterday they started him on oral pain meds to make sure it managed his pain. Oxycontin/Percocet/dilaudid – all in pill form. I’m anxious that we are able to stay on top of the pain, but he wants to go home so badly that I will do or learn anything to get him there.

I wanted to use Hospice but Stephen told me ahead of time that if they wouldn’t administer antibiotics, he didn’t want to use them. There are about 3 doctors handling his care while Stephen is home; the nurse will report to Stephen’s GP, his ID doctor, and Stephen’s oncologist.

It is very hard for me to believe that the end is near.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I have to vent....

I become so #$%^ upset when I read that someone wants to live so badly, Re:
"Stephen wants the antibiotics and it is still his intention to heal and improve."
while those that love him, have become so complacent and trusting to the opinions
of those that do not have that love.

When one wants to survive, they can survive, and they can do so by using
that energy and instinct to their best advantage.

It's when we allow ourselves to listen to other than our instinct and intuition,
that we can fail to survive.

There are other alternatives to "common, commercial therapy", and
it's never too late to try -any- of them; It's never too late to get other
opinions even within the same sciences, but if it's time to try something
radical, then it's time to do that.

If the patient isn't ready to call it quits, no-one else should either.

I'm sorry if anyone finds that insulting, but someone has to say what's
right, not just what someone wants to hear.

John

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

You should go to Colon Club and read the over two weeks of posts on what all is going on with Stephen. Cindy has not become complacent. She is fighting for Stephen's wishes.

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

I have read all of Cindy's post regarding Stephen, I only hope that if the time comes I can be half the caregiver and advocate she has been. She has fought with everything she has to see that Stephen's wishes are done. She is quite the figher for her husband.

Tina

melissaincali's picture
melissaincali
Posts: 34
Joined: Sep 2009

Hi John,
I don't think I know much of your story and you probably don't know mine, but I found your comments upsetting. My husband was septic and was fighting until the end, but sometimes the body is done before the mind can catch up to that reality. Sometimes the cancer is too strong. There are some things that can't be fixed...when your liver fails, your kidney fails, your heart starts failing....even if you really don't want to die...sometimes you do. Being a caregiver and watching the person I loved most in life die from cancer is the hardest thing I had to do up to that point (living without him, now makes the cancer battle look easy). It is truly upsetting when you have to get to the point of acceptance that they truly are not going to make it, to hear people tell you (when they don't know your story) that you haven't tried everything...that you are quitting on the person you love.

At the time my husband died (who was a doctor himself), he was drugged up on painkillers and wasn't able to think as clearly as he usually did. I had to have the conversation about if he wanted to continue with the treatments that weren't working in the hospital with the possibility that he could die in the hospital at any time from heart failure or if he wanted to come home and die there. He insisted he wanted to die at home, but wanted to walk out of the hospital to get there. I had to explain to him that wasn't possible. The will to survive and the ability to survive are not the same thing. If it were, Brant would still be alive.

I just felt the need to post this, because having been there myself...caregivers who have given everything and are losing everything, don't need to hear at this stage of decision making that if they only had tried carrot juice (or whatever else people think would get rid of the cancer when all organ are shutting down)...is hurtful. We all go through the what ifs anyways...we didn't give up, but sometimes wanting something so badly to be true doesn't actually make it possible.
Melissa

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I was in ICU for over three weeks. I finally became so weak
in the "step-down" facility, that they could no longer get a pulse.

I could no longer sit up under my own power, and my voice could
not be raised over a whisper.

The hospital representative gave me brochures of hospice facilities,
and home hospice offers, along with all the necessary papers to sign.

A minister came in to offer religious assistance for what was to be my
last gasp. Even my wife was losing hope.....

That was over three years ago....

I became that weak due to severe dehydration.

I did not end up having any chemotherapy for my cancer. Nor I did
have radiation, or any other type of western medicine therapy
for what they said was the overwhelming amount of cancer cells
that were assumed to be inside me.

That was over three years ago....

If the route I took fails to continue to work, I would try something else;
something that I wouldn't bother with right now..

I haven't read at the "Colon Club", with exception of the story represented here.

From that, I have learned that:

"Stephen" may have had whatever western medicine has to offer at
that specific facility, but nothing offered at any other facility.

He has not tried any other possible therapy at any other western medicine
facility.

He has not had opinions outside of his area; the "other opinions" are
all from the doctors at that same facility.

He has not been offered other alternatives aside from western medicine's
"approved" products.

His wife says that:
"Stephen wants the antibiotics and it is still his intention to heal and improve".

I suppose we could just rack that up to some sort of delirium; some
sort of drug-induced unrealistic mental state.... (I don't, however...)

I know well, what it's like to have a liver fail, and how it takes every other
organ into a death spiral - and full well how it causes a chemical reaction
in the brain to generate the overwhelming feeling that one is faced with
imminent death (BTDT, btw).

I also had too much morphine for too, too long in the ICU, and can look
back realistically at the unrealistic attitude I had (like Stephen's ?), that I was
not about to allow myself to die in some %^$%# hospital because there
was "no longer any hope" for me..

That was over three years ago.

I hate to see any reader "give up", as well as any care-giver give up
and resign to the opinions of others, that there is nothing left to do.

The strange thing about being here at this forum? I said a long while back,
that as cancer victims, we should accept our mortality; understand that
death is as much of a part of living as it is dying. We should accept
the fact that we can die, and that it could be a lot sooner than we want.

I was told that I was wrong, that we should never, ever, accept the thought
of dying; that we should fight until there is not a speck of light, until there
is no breath to be taken, and until we are no longer conscious.

As a care-giver, the fight is tougher, since we are here after our gallant
fighter is gone......against his or her will.

You're right Melissa, "The will to survive and the ability to survive are not the same thing ",
but we shouldn't allow the "ability", to destroy the "will".

I'm not religious; I don't subscribe to any conformed religious organization,
but I do pray that Stephen manages to find another way to pull through.

I pray also for his wife.

John

melissaincali's picture
melissaincali
Posts: 34
Joined: Sep 2009

John,
Thanks for telling your story. It helps me to understand your point of view better. I think we lived through different circumstances and that is why we see things differently. We hoped Brant was just dehydrated, but he was septic when I took him in and with his weakened condition there was no coming back from that. If he could have, he would. He was at Stanford and the doctor's were his friends and I truly believe they tried everything possible to save him or give us more time.

I think that is where we have some common ground in our beliefs....I think it is best for both the patient and caregiver to feel that they have tried everything they could (or everything they want) to live. If I had to wonder if there was something else that would have saved him that we didn't try, then I would go insane. So, I think it is important to keep up the hope and fight as hard as you can, which we did. Sometimes it works like it did for you thankfully and sometimes the results aren't what you want them to be, but you never know until you try (which I think is one of your points)

I think it is a difficult line between encouraging people to keep on going and the patient and caregiver knowing when enough is enough. It is so individual and each situation is so different. I don't believe that Brant could have pulled through the situation he was in. I also know that if he had, he would have died within months from the cancer and not the infection. It was everywhere and it was aggressive in a previously healthy 34 year old man.

Unfortunately, I have since joined a new online discussion group...young widows...and have heard the stories of slow and painful deaths from cancer. Brant died in his sleep at home when his heart just stopped. It is hard to think this way, but that was a blessing. There was a dignity in that and I know he would have preferred that over slowly being taken over by the cancer. Luckily, Brant and I were able to have these discussions before he was too ill and we were on the same page and we did what was best for him. I'm not saying that choice would be best for anyone else. I think only the individuals in the situation can determine how to proceed.

I do know that everyone on this board cares immensely for each other and wants to provide help and support anyway they can. I've watched from the sidelines a bit in the past months, because I think it is best for those still battling to focus on the fight. I don't know if it is helpful or not helpful for people to hear my story from this side of the battle or if it is too hard.

So not trying to be contentious, just looking at these situations from a different perspective than others.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Melissa, your last two posts illustrate succintly and to the point about where that fine line is between fighting & enough. I know in reading and understanding yours and Cindy's stories, that both of you ladies have done/are doing absolutely everything there was/is to do. I'd be more than proud to have you both on my team, any day of the week.

As you put it so well, sometimes the body just can't take it anymore. It's not mind over matter at that point, it's so much more.

Losing someone you care so much about is very hard for folks - we want to fix things so bad, but you just cannot replace a loss such as these. My heart aches for you and everyone that has lost a loved one.

I, for one, think your story is extremely valuable and helpful to so many people here, and especially caregivers, who are facing what you have are going through now. I feel that you have much to offer everyone and I think your direct experience would carry much credibility and be of enormous benefit.

I hope to see you around when you feel like you want to. It's nice to see you now.

We can all learn so much from you:) You've definitely showed me a thing or two:)

Warmest regards - Craig

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

Diane- I'm not sure if Cindy normally writes on this board or just on the Colon Club- so not sure if Cindy is reading the replies here- anyhow...
I will address my comments to Cindy anyhow.

Cindy,
I hear your heartbreak in all that you wrote- I'm so sorry the lot you and your husband have dealt with in life thus far. As John mentioned, anytime a doctor says basically "there's no use"- you Must get another opinion, and make sure that opinion is from a different facility and is no one associated with the same doctor or hospital. I would do that as soon as possible!

What a wonderful testimony of what a good relationship is like you and your husband must have- that's heartwarming to hear. Your heart is overwhelmed and broken, obviously, as you are thinking forward to what life without him will be like for you. Try not to do that to yourself- it's just too much for you to take. Take one day at a time.
I'd still try to get other opinions- it could buy some more time & hopefully quality time, at that.

With that said, I don't want to be totally insensitive, either. I just read what Melissa wrote about how upsetting it was as a caregiver to have people tell you what you need to try now, what you should have done, etc., when you know that it's really going to be the end. I am only saying what I said above because I know there have been people here on the board who thought it was the end for them, but they did rally back and are still here and fighting now. I believe you know if it's time or not... feel me wrapping my arms around you right now and giving you a hug- I'm sorry for what you're having to endure.

Not knowing what your beliefs are, I just want to say this to you- not meant as preaching, but as sharing from my very soul to you what gives me the hope to go on and live life everyday whether that day brings good or bad... the Lord Jesus Christ offers us a peace and a type of joy that just cannot even be explained in words... even in the midst of having stage IV rectal cancer and pondering if I'll be around for my kids or not... I place my trust and faith in Jesus and I have truly been given a peace about it all- a peace that surpasses all understanding.

Love to you,
Lisa

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