New Diagnosis - my Mom **She's passed!!!

LizNDale

Geez, sometimes I wonder if *I* have the brain mets!

When I got there this afternoon, she was coughing a lot and I could hear a wheeze. The nurses (got there at shift change) were saying they think she is catching a cold, that they started to hear the wheeze last night, and she sounds congested today. She could barely stay awake today when I was there.

As soon as I left I forgot all about it! WTF??

So now 2 hours later now my brother just calls: "man did you hear mom wheeze? And cough? " I'm like "well yeah I did" and wondering to myself why I hadn't mentioned it to him on any of the 3 frickin phone calls we had while I was there! He's saying he thinks we need to get her to Dr tomorrow. What the heck is wrong with me? So I called the nurse. She said she's been thinking about it since my brother left, and mom's coughing more now, and in her opinion we should take her to Dr tomorrow. Doesn't think she needs ER tonight, though she hasn't listened to her lungs. She said she will when she puts mom in her sleep gown, and will call me if se hears anything worrying.

But how the heck could I just forget about it? I think my brother thought I was pretty loopy not telling him about it...so do I!
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2392

Liz,

Heck no -- welcome to the "where did my brain go?" club. It's a weird phenomenon, but I experienced horrendous bouts of forgetfulness during my husband's journey.

Do you know who kept me on track and was my personal palm-pilot? You guessed it -- my husband! Shocked

Be aware that her lungs can be compromised in a big way with fluid, infection, etc. and still have decent breath sounds. We found that out the hard way. My husband's lungs always sounded deceptively good. Don't let it fool the nurses. Insist on x-rays to be sure she isn't developing pnuemonia. At least there are some overt signs with the coughing and wheezing that may force them to do an x-ray.

Good luck and if you forget this post -- I understand! Laughing

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

dano

Hi Liz;
I think you and I and my wife Sue would be great friends, we have so much in common. Sue and I have been members of the "where did my brain go?" club for quite a while, that reason I don't know how long. But we laugh about it, we are a good match. Hope you can get your brother laughing to, cause it might get worse, who knows, we wont. lol... But a feel for you, hoping the relatives will support you.

God Bless
Dan
_________________
55 year old male, Diagnosed Nov. 9,2007 with NSCLC IV with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08 treatments now every 4 weeks with Alimta, taking Lovenox for blood clots, Now working full time
http://cancerforums.net/viewtopic.php?t=9993

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2392

Dano said: "...cause it might get worse, who knows, we won't..."

PBJ is laughing with a knowing bob of the head.

Gotta keep laughing -- got us through a lot of crazy times.
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

LizNDale

Well, today was chemo day 5, but Dr said it's at point where it would be more harm than good. Said she should have scans in two weeks, if tumors have shrunk we'll go from there.

Mom just kinda kept her eyes closed, she was so tired, and uncomfortable in the wheel chair.

Outside, Dr told my brother that he thinks her deterioration is from the cancer, not the treatment and that we should make sure mom has her DNR and other living will docs with her.

I called the hospice nurse at Boutwells, asked her to go meet with mom. Mom just smiled at her, eyes closed, would not say either way if she wanted hospice or not. So for now no Hospice, but this nurse did get with The Gathering nurses and have them call Dr S for pain meds standing order, and to have mom registered with the coroner, so we can avoid the 911 thing.

Hospice nurse does not think mom will make it to the scans. She says she is failing now. I think she is right. I think my gut was right that night a couple weeks ago.

Not sure what to do about Hospice and mom. Nurse told me mom can have hospice, and if she makes it the 2 weeks, and wants the scans, can go off it. Think we'll present it to mom that way, why not have hospice now, doesn't mean you're giving up, and when the scan appointment comes up and you still want then, we'll go off hospice. But we'll do that tomorrow. Today's been a very big day for her.
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2392

Hi Liz,

Sorry to hear this news. I had hoped it was the chemo that was knocking her back. Maybe she'll rally after she gets through this round. It's hard to know -- that's the cruddy part of this disease.

How often is she looked after at the Gathering? I'm not sure I really understand the whole concept. If she is being watched closely by nursing staff and has appropriate meds, maybe hospice isn't needed. Just a thought. Let her decide what she wants. A lot of people are very resistant to hospice and all of what bringing them in means. My husband didn't want that at all.

Please keep us posted with how things are going and take care of yourself. It's such a tough time for a loved one.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

LizNDale

Hi PBJ,

Yes, The Gathering is the Hospice Suite, but she is technically in Respite Care.

The primary difference would be that her case managment would shift from the Assisted Living RNs to the Hospice RNs. Her day to day, hour to hour care is still handle by the same LPNs who are always in the suite, it's just who they take direction from.

The LPNs are hospice trained.

They will make sure she is comfortable, just as they would if she were Hospice. Changes in meds would be more seamless with Hospice, could be enacted immediately without having to contact her Dr and get orders.

But I think that is why the Hospice nurse suggested they get standing orders for pain meds.

The other difference would be the services available to the family, and I think we're ok.

The LPNs have said they wish she would accept Hospice because the Hospice Nurses are so wonderful, but I think she may be beyond caring now.

She's eating very little, is completely bed-ridden, and only opens her eyes occasionally.

Late yesterday afternoon I kissed her, she opened her eyes, saw me and croaked out an "I love you". She asked about the chemo, I told her there wasn't going to be any chemo, and she said "oh good" with quite a bit of passion, and closed her eyes.

She has no recollection of being at the Drs or of anything he said.

I think you're right PBJ, Hospice or not, it's not really going to make any difference. All the important things are covered.

I'm hoping we get more moments of awareness, but that's for our sake not hers. I'll hang onto yesterday's "I love you".

She's ok, she really is. She's not afraid, she is in no pain, her only discomfort now is that there's a BM she's unable to expel, and they are doing their utmost to help her pass it. Her faith is strong, her husband is waiting for her, and she's ready. Nothing undone or unsaid.

All that's left is to make sure she's not alone and we've got that covered in spades.

God Bless her, God Bless all of you.

In hope,

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

maryaz

Hi Liz; Sorry to hear about this. I will be thinking of you and praying for you and your Mom. May God comfort you all.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

LizNDale

Mom just passed! 10 minutes ago, peacefully and surrounded by love, and family, but we weren't there, just finishing showers, I know that is not important, and i need to get over that but i am damn angry, angry about all the crap, it just sucks sucks sucks. god it was SO FAST so fast, too fast, I have to go, and will post more later...

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

Tera · Senior User Joined: 31 Dec 2007 Posts: 279

I'm so sorry Liz. I know what you mean though. I got to my mom's bedside just after she took her last breath. Her best friend was with her, holding her hand and encouraging her through it. I had run home for a few minutes (I lived a mile up the road) to grab somethings, not knowing she was that close. Hospice nurse was there just 2 hours before she passed and could not tell me it was happening or when, so I thought I was safe to leave for a few minutes. I so wanted to be by her side when it happened and got there just a tad too late.

It does happen fast and you don't know when, you are right. But listen.....your mom knew she was loved, she was in no pain, and had a peaceful passing thanks to all the love and care her family ensured she got. So don't beat yourself up, ok? She knows how loved she is and I pray you will feel her arms wrapped around you, because believe me, she will be by your side loving you.

partlysunny · Regular Joined: 06 Aug 2008 Posts: 17 Location: US

Oh, Liz. I'm so very sorry. Tera is quite right. Your Mom knows how much she is loved by all of you. Cherish your memories.
Cindy
_________________
Cindy
***********************************
My beautiful Mom
Diagnosed July 8, 2008 Stage IV NSCLC
Died peacefully September 2, 2008

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2392

(((((Liz)))))),

My heartfelt sympathy to you and yours. I've realized that we don't necessarily need to "be there", but I also know the angst of not being there. This will fade in time, but it's quite okay to feel angry about the whole deal.

I'm sorry this happened so quickly and am sending hugs, thoughts, and prayers to you.

Come back when you are able -- we are still here to help you in the aftermath. I hate this for you. Just hate it.

God bless all of you.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

karibrenmom · Regular Joined: 23 Oct 2007 Posts: 45

I am so sorry Liz. ((Hugs)) and prayers to you all.
_________________
My mom was diagnosed with NSCLC Squamous Carcinoma 10/23/2007. Wedge resection 11/20/2007. Final pathology showed poorly differiniated large cell carcinoma with invasion of visceral pluera, T2NxM0/stage 1B. 12/14/2007. No chemo elected.

Ckim · Experienced user Joined: 15 Aug 2008 Posts: 58

{{{{{Liz}}}}}

Sad, sad news. And not the ending you wanted, but then, an ending is not what any of us really wants.

It's a blessing that you had a moment with her yesterday where she connected with you and could tell you that she loved you one more time.

She is out of pain now and unfortunately for you the painful journey of grief begins for you and your family.

I am thinking of you and thinking of your mom. It was too fast, not only this morning, but from diagnosis to today. There is never enough time to let go of someone you love.

I hope that in the coming days as you make preparations for her that you will by surrounded by love and memories of all the wonderful times you shared.

Hugs...

LizNDale

Thank you all,

{{{{everybody}}}}

I got over the bad stuff very quickly, it truly isn't important in the grand scheme of things. Yes, I wish I had been there, but that is only for me, and with the incredible description given to me by the nurse Bonnie, I feel I WAS there. But I need to back up and give a bit more background...

Yesterday in the morning Bonnie (nurse) called me, said she'd had a good conversation about Hospice with my mom, Cindy.

She went in, and while giving my mom a back rub started talking Hospice. Things like "Did you know that just because you're in Hospice doesn't mean you're not going to get better? DYK that you can get kicked out of hospice? DYK that if you accept Hospice that then I have so much more freedom in how to take care of you? That I can give you morphine if you ever need it? DYK that one of the side effects of morphine is that it helps you breath easier?" etc, to all of these questions my mom answered no, she hadn't known. She had thought she had to leave the Gathering, thought Hospice was a place, not a concept. She agreed to have the Hospice Nurse come back on Monday. Bonnie said "You're angry, aren't you?" She said she was. Bonnie said "that's ok, you can be angry" "I can?" Yes! Absolutely!" She asked mom if she felt that my brother and I were better able to make decisions for her, she did, and so on Monday afetr the Hospice nurse sees her, and she did not object, she would have hospice.

I was SO grateful after this phone call, that Bonnie is an absolute angel!

Then, about an hour later, as I was waiting for Dale to get home so we could go, Bonnie called me again. "When are you coming over?" I told her in a couple hours. She said "Well, I think you should come now. I can't get a blood pressure and her pulse is very rapid. I called your brother (Dave) but just got voice mail."

Well, I knew he was out in the yard mowing, so I called my SIL, Anne, cell phone, told her, she said "I'm in the car, I'll turn around and go get him". She told me later she tore up the driveway, blasting the horn as she went to get his attention as he was weedwhacking. Dave called me a minute later and I told him what Bonnie told me.

So, Dales not home, I need to drive myself, about a 30 mile drive from River Falls WI to Stillwater MN. I put on the cruise control, so I wouldn't ledfoot it, and I must have been in some kind of altered state cause this drive that I figured would take FOREVER just flew by!

I arrived, went to The Gathering, went to her room, she was laying peacefully, so swollen from the steroid, and breathing that rattle. Luckily I knew by now that it truly doesn't bother the dying, just icky for the family, so I didn't care about that.

I called her name and she opened her eyes, I told her I loved her, she moved her lips and mumbled an I Love you back, I kissed her many many times.

She was surrounded by family and her best friend all evening, the last of us left about 10.

At one point in the evening, I was helping the next shift nurse Carol reposition mom and see if she needed changing. Carol washed her face with a very warm washcloth, and you could tell my mom loved it. I so enjoyed watching Carol taking care of mom like that, she was so gentle and loving.

At one point I said I'd like to climb into bed with her, mom kind of smiled a bit, and Carol said "Go right ahead!" So I did, I climbed in and spooned her and held her, stroked her back. I'll never forget it.

Throughout the evening her responses became fewer and fewer.

Finally about 10 we left.

I called the nurse at midnight - no change, Called again at 6:00 am - no change. Got up about 7:30, made coffee, took a shower, puttered around, Dale was getting into the shower, and a bit after 8:15 my cell rang, was Dave. He gave me the news and I came apart. He was telling me how beautiful it was, but I was in a mass of guilt and anguish. Finally he said "you're angry! Don't, please, it was so peaceful Liz, she's with Dad now" and I cried and sobbed and he sobbed, I hung up, Dale grabbed me and I just broke down and cried out "no!" and stamped my feet like a spoiled toddler, but I HAD to, even though I knew this was wrong, it was there, it was real, I had to experience it before I could get past it. I finished my tantrum, was totally spent, and thought "I have to post at the forum", and I did.

By the time we left a few minutes later, I was MUCH calmer, and in a more positive, healthy frame of mind. Called Dave and told him I was ok, we were on our way.

When we got there, there was Dave coming out. He saw us, saw me, said "Liz" in a way I've never heard, and we held onto each other so hard, and cried.

We got to The Gathering, I hugged Anne, their son Brian, my mom's sister Lee. Then Dale and I went into mom's room, saw her and caught our breath. She looked so peaceful, so peaceful, and I swear to you all on a stack of bibles, an honest to goodness smile on her face. Not a huge grin or anything, but a beautiful, small smile. Not a grimace or a trick of gravity, but a real smile.

I kissed her and stroked her face and said goodbye. Bonnie was back on shift and she came into the room, this was later, I was in there alone, and she told me the whole story:

Dave and Anne got to The Gathering just a bit after 8. They told mom it was ok to go, that we all loved her very much and would be fine. After saying this, her breathing changed, became very shallow, and no longer had the gurgle. Anne asked Bonnie to come in, she did and said "this is the change we were waiting for" She and Anne and Dave circled the bed, held her hands, and Bonnie said "It's ok Cindy. if you see Al, go to him". She breathed once, twice, and then she was gone. Bonnie said it was the most beautiful death she had ever experienced.

My California brother, Spencer, was in the air, had flown last night to chicago and then this morning to Minnesota. When he landed at 10 and called us, we had to tell him she had already passed, and he sobbed and told me he had wanted to be there when it happened, and boy did I know how he felt! He took a shuttle and within an hour was with us.

It was an incredible day, with moments of horrific sorrow and some of near euphoria.

Her memorial service will be on Thursday afternoon. It will be a celebration of her life, and I am going to enjoy every moment of it, be present in every moment of it.

The weekend after her diagnosis, at the cabin, I helped mom write a letter to a friend who wanted to know why God would do this, give someone cancer. She spoke and I listened and wrote it down. Read it back to her, and wrote some more. I'm going to TRY to read it at her memorial service. If I can't, my niece Lisa will read it for me. I've edited it somewhat, both to take the personal stuff out about her friend and to frame it specifically for the service.

Please go to the memorial forum and read it. It is a beautiful expression of her faith. It's her thoughts, her words, her faith I just got it down on paper. I'll edit this post with the link after I've added that.

Thank you all for your wonderful expressions of support, it means the world to me.

In hope,

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

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