Christine’s Story

Christines husband said:

I say:
“We need help”
“What do we tell the kids”
“What do we do”
She says:
“We don’t need anyone”
“Don’t tell the kids anything”
“I don’t want to talk about it”

Wow! That's all I can think
Wow! That's all I can think to say. Your whole family has really been put through the ringer! I'm sorry to hear you've had to endur so much with so little help. This whole cancer thing S***S BIG TIME! You didn't mention the stage of her cancer, but it sounds like IVB. There has to be some kind of groups that provide support in your area. I believe that you may even contact ACS through this website for information. Your wife may be choosing to ignore her disease, but you have to think of yourself and family. Caregiver burnout happens to even the toughest individuals. Do yourself that favor and start taking steps to see what's available; especially for the kids. It takes time for everything to fall in place, so you don't want to wait until it's too late.
I'll keep you in my prayers. Feel free to come here to vent, ask questions, whatever...there are good people here who have been through the same as you. Keep posting!

Christines husband said:

Becky

She was diagnosed as IIb but was treated as IVb because of her age. No one has changed this diagnosis that I’m aware of.

We’re now being told by Nuero surgeons and oncologists that there is no more they can do surgically and there’s no reason for new appointments.

Does this mean they’ve given up?

Christines husband,
I am so
Christines husband,
I am so sorry to hear you say this. And yes, it does sound like they've given up. That does not mean that you and your wife have to give up. I have read many stories just like yours and those individuals were persistent and sought out 2nd or 3rd opinions and have defied all odds. They are alive and well...many of them are cancer free or in remission.
I can read between the lines that you are feeling totally defeated at this time. Cancer does that to us all! It sounds like it's time you took a deep breath and sat down with your wife and had a heart to heart talk. What does SHE want at this time? Is she willing to continue the fight? Depending on her decision, your family will be enduring a stremendous battle ahead...whatever the choice.
Keep me posted. ((HUGS))

Christines husband said:

Update
She had had some blood work done a couple of weeks ago and there was a spike in her kidney counts. Urologist ended up putting in stints between her kidneys and and her bladder. Biopsy was done on a mass in her bladder. It's come back positive for a different kind of cancer. Really? Can't she cut a break?

She can't walk more than 30 feet unassisted. She cant dress herself. Shes doped to the gills for her pain, now with more random bouts of anger and grief aimed at either me or our kids. She's cut out all the people that care about her, except me, nurses aren't allowed to touch her. I get to do it.

We'll get a pain pump this week.

Neuro Doc: Bone scan done Friday. Not looking forward to the results.

Chemo Doc: We'll fight as long as you want to do it. But if you want to stop we understand.

Radation doc: "Can't do anything without risk of paralyzing you. If you want to, we can just get the stints removed and she just die in her sleep after a couple of days."

Update
It really sounds like Christine's cancer is aggressive. Has anyone put you in touch with palliative care people to help you deal with all of this?
My Mom died of uterine cancer and her cancer went to her bones-spine and arm (painful) and then her adrenal gland (near kidney).
I knew that she was dying when her urinary catheter bag had more blood than urine in it. She died in about a two months from the time she was told her cancer was terminal. People who are dying of cancer often know it and turn inward to finish work internally so to speak. My Mom was a RN and she knew she was dying. She was quiet, talked very little, mostly slept, until about 4 days before she died. Four days before she died she called each one of her four adult children to her bedside and had a final conversation with each of us. She also took off all of her jewelry and gave it to my sister and I. She was ready to join our Lord in heaven.
Dying people often don't talk much towards the end. The pain meds also make them so doped up that communication isn't the best. Christine's oncologist needs to have an honest conversation with you about her prognosis. There is always HOPE but there is a need to have honest communication about what to expect. I am so very sorry that Christine, you and your family are suffering. Praying for Christine and you.
Peace and Caring,
Lori

Christines husband said:

4/4/10
Pain pump hooked up. 3mg morphine per hour, authorized to be bumped up to 6mg.

Home health nurse here every other day.

Tubes now running directly out of her kidneys so they'll drain.

Neurologist can do nothing surgically. Theres just not enough left of her spine.

We have talked to her chemo doctor. She offered more chemo. I thought it was a bad idea.
Christine wants to fight. She has asked for my support. I've given it.

Got the wheelchair last week. She cried when I said we may have to put in a ramp.

Hospital bed comes this week.

She's doped to the gills. Sleeps all day. I can't get her to eat.

My mother has told me repeatedly that if I needed help to let her know. She's retired. I said I need someone to watch her a couple of days a week so I could go to work. Shes much too busy. Says I should call my insurance company and see if they could suggest something. Thanks mom.

I've talked to our kids. Told them what was going on. Told them to expect the worst, pray for the best. Asked if anyone had any questions. 13 and 12 year old had nothing. Our 9yo asked if mommy was going to die. I said yes. Tears all around.

I've tried to talk to her about a living will and a DNR. She thinks I want her to die.

Urologist pulled me aside. Said they could pull the tubes out of her bladder. She'd die of kidney failure after a couple of days. In her sleep. Just something to think about. Could I make that choice? Could I look her (or my kids) in the eye and tell them why I chose to do this?

What a mess......

Christineshusband,
It is
Christineshusband,
It is heart wrenching reading your words. No one deserves to shoulder all this on their own. I have great respect for you supporting her decision to continue the fight...although from your description the fight is nearly over. And the chemo the doctor is offering is not to try and fight the cancer, but with some it will help improve the quality of life. I don't understand that one, because the chemo drugs take away nearly all quality of life from my stand point. Is the home health nurse working with hospice? It sounds as if they are keeping her as comfortable as possible at this time with the pain meds...and yes, they do keep a person in a near comatose state. You stated that she won't eat...is she still drinking?
It's sad that your mother has turned her back on you, just when you need her most. People will often do this due to fear of death itself. It's inevitable...we all have to die, but many people fear that aspect of life. Can she at least help out with the kids?
It's good that you've sat down and talked with them. This is not something children should have to deal with...it's not fair, but then, life never is. Can your mother at least help out with the kids? Keeping their lives as close to normal throughout this will help them deal with all that's being thrown at them. Have you talked with the counselors at the kids school? They can be a source of support for them. They may not feel comfortable talking about their feelings at home with all that's going on, but may open to someone who's familiar to them. And this person can keep you informed of what's going on in their heads.
I can understand your wife's thinking you've given up on her by asking for her to create a living will/DNR. Most people don't deal with these things until death is upon the doorstep. It may help if the two of you both fill out these items together...one for you, one for her. Explain that's it's in the best interest of the children. None of us can ever predict when our time will come and it's never to early to prepare; especially if children are involved. We all get to busy with living life that we don't take time to prepare for end of life. My husband and I both sat down and filled out the necessary paperwork when I was diagnosed. It only took up a small space of our time, but took a big burden off both our shoulders. Then we put the papers away and forgot about them. They'll serve their purpose one day...just not today.
Your urologist is correct. If he were to pull the tubes, life would end sooner than later. Your really in a tough spot with this one, especially since your wife already thinks you want her to die. And going this way is not a fun thing to watch...I won't even describe it. I'm an RN and have seen this happen. Often, at end of life, the morphine drip gets turned up. The reasoning is that not only does this keep the patient comfortable, but is depresses the respiratory status, allowing the process to end sooner than later.
BIG ((HUGS)) to you for all your going through. Keep us posted.

Jilly.taylor said:

Christines Husband, just read
Just read your pages you wrote, i am just soo lost for words, my heart goes out to you
and your family, you seem to be going through such the worst times ever. I have been thinking about you non stop today since reading about your wife, i am totally lost for words, i too have had cancer, i was lucky enough to have been given the all clear, i at the time thought my world was falling apart, i now realise it was nothing to what you and your family are going through, just want you know that you and your family are in my thoughts and will be in my prayers.......Jily xxxx

Praying for you
Christine's husband, I am so sorry that you are going through this. Cancer is a cruel, cruel disease. My sister is struggling with late-stage endometrial cancer. I am trying to help, but don't know what to do. I am praying for Christine, for you, and for your family.

Christines husband said:

6-3-10
She’s down to about 90lbs. Makes Karen Carpenter look heavyset.
Eating and drinking just enough to survive.
Doing work on the house. Getting it ready to put on the market.
Still not communicative.
Home health has brought in a social worker to talk to her as she won’t talk to anyone else.
Morphine pump at 10mg an hour.
She lays there all day in her hospital bed which is in the living room (not been out of it in 3 weeks). Demands silence. Kids avoid her completely now as she can offer them nothing. Shes attempted to repremand them a few times they ignore her unless I step in.
She had no friends or close family before all this happened, only me and the kids. She’s emotionally distanced herself from us.
I provide the best care I can. Am tired. Want to run away, but who would take care of her? I’m all she has, and I want no more.

I am so sorry.
There is nothing more to say than that.

Christines husband said:

6-3-10
She’s down to about 90lbs. Makes Karen Carpenter look heavyset.
Eating and drinking just enough to survive.
Doing work on the house. Getting it ready to put on the market.
Still not communicative.
Home health has brought in a social worker to talk to her as she won’t talk to anyone else.
Morphine pump at 10mg an hour.
She lays there all day in her hospital bed which is in the living room (not been out of it in 3 weeks). Demands silence. Kids avoid her completely now as she can offer them nothing. Shes attempted to repremand them a few times they ignore her unless I step in.
She had no friends or close family before all this happened, only me and the kids. She’s emotionally distanced herself from us.
I provide the best care I can. Am tired. Want to run away, but who would take care of her? I’m all she has, and I want no more.

I think everything you are
I think everything you are feeling is absolutely normal. Who wouldn't want to run away from such a painful situation that they have no chance of making better. You have been strong for so long and it has been so hard. Don't beat yourself up for being drained.
I went thru this with my dad and still feel the guilt of wanting it to be over for him. We only feel that way because we love them. We are human and have our physical and emotional limits.
Talk to us. Lean on us. I wish you had a loving support system there to help you, your wife and your children thru this. We are here for you!!!

Christines husband said:

6-8-10
The morphine is making it hard for her to distinguish between dreams and what happens when she’s awake. She thinks the kids are going to be shipped off, that I’m in the process of leaving her, and that my mother is trying to kill her. She’ll be asleep and vocalize a complete conversation within her dream. Hand gestures, raised voices, the whole thing.

She’s on Lexipro and I’m going to see if I can get the MG bumped up on it. The kids are terrified and I’ve tried to explain it to them as best I can as why she’s acting the way she is. They walk on egg shells around her. I try to get them to mind her but she spouts demands from her dreams and wakes and thinks she actually wants them. My youngest was searching the house for a pink magic marker for almost 45 min when I found out about it.

How can I shield my kids from this? Summer just makes it worse because they’ve nowhere to go. I need them at the house to care for her while I try to work.

Christines husband,
My heart
Christines husband,
My heart breaks reading your words. You say you have a social worker involved and a home health aide...can't they step in and take a load of you and your kids shoulders? Is there a possibility of hospice placement?
It sounds like she's having a reaction to the increased morphine. I know this is used for pain, but have you discussed other options with the docs? It could also be a side effect of the cancer in her spine. I am so sorry! These next few weeks are going to be very difficult. I've done a lot of end of life care for patients and there are never any easy answers....time. Encourage the kids to remember the good times, who their mom really is, not what their experiencing at this time.
Keep posting...it helps.