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

LizNDale

oh Dan, I can barely formulate a reply, thank you thank you thank you. I'm printing it out, gonna keep it in my purse, and add it to my treasure chest.

Yesterday was bad, she was very agitated in early evening, trying to talk but being unable to enunciate clearly or find the right words..."I'm so, I don't need, I don't need, I need to to to to, oh oh I don't want, I want open, oh oh oh" and she'd cry, dear Lord it was breaking my heart, I didn't know how to comfort her, how to calm her, she'd cry and then she said "I don't like myself" very clearly.. other words were in there, they were real words but made no sense where she said them, but what came through loud and clear was distress, sadness and fear. I put my dad's picture on her bed table so she could see it whenever she opened her eyes, told her "Here's dad, he's watching over you tonight, you'll be safe. And sleep in Jesus' arms tonight, He's waiting to hold you for the night so just go to Him and let Him. " She seemed to calm down a bit, I went out and spoke to the nurse who heard everything, and assured me she's seen this with others.

I asked her to give my mom the ativan if she gets agitated again or can't sleep...they have orders for it so they can, I think my mom has taken it only twice since they were prescribed in early July. She promised me she would and she'd put it in the notes for the other nurses.

Last night at 10 she called before going off shift and said Mom was sleeping hard, and had been since I left. So hard, and so good, that she didn't wake her up for her shower, but gave her a bed bath instead through which my mom slept. No ativan either! God bless this nurse, her call to me helped me get a good nights sleep.

This morning at 6 I called the nurse, the night nurse was on (I haven't met her yet) and she said mom slept very well all night. 2 instances of incontinence and she was very calm while she was cleaned. Smiled at the nurse. So hopefully today will be a better day for her.

I sure hope all this is from the Chemo last Friday.

Blessings to all,

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

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Liz,

Wow -- have I missed a lot of goings on with your Mom. Between the rads and the steroids, she's bound to be a little loopy at times. It does take awhile for the mental effects to subside. Add more chemo to the mix and she's probably crashing from that again. I don't remember what she's taking, but usually my husband "went away" for several days. Kind of like a mental hiatus. I used to tell him after chemo that I really hated to see him go and could always tell when he was getting back with the program. The restlessness/anxiety was a problem for him with certain chemo agents. I'd toss him in the car and take him for drives so he could feel like a part of the world when he got antsy. Ativan helped too!

Glad you are stepping out and becoming such a strong advocate for her. You almost have to make sure every i is dotted and every t is crossed for the patient. Too much stuff falls through the cracks when there are multiple doctors handling the case. Not all that uncommon. Kudos to you for catching the issues and insisting that they coordinate better.

Hopefully you'll see a turnaround in her condition soon. I'm happy she is somewhere safe and protected.

Good luck and prayers.

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

Thanks PBJ,

How long did your husband "go away"?

Mom is taking carboplatin and taxol. Her most recent session was last Friday.

She seems a bit less agitated, but yesterday she did get anxious when I left on an errand and she thought 3 hours had gone by when only 20 mins had. When I got back the nurse told me mom had managed to work her way down to the foot of her bed. The nurse had to call an aid for help getting her set to rights. (the bed has rails, thank goodness!)

She seems to have regressed in age, she acts and responds much like a child does. She is extremely emotional, and is either smiling or crying. She eats very little and sleeps all the time, the steroid is not keeping her awake at all. She can stay awake for a few minutes at a time, that's it, and her sleep is getting deeper and deeper.

She is almost completely incontinent now.

I hope I'm making more of this than it really is, but I have a bad feeling about this. Something in my gut is telling me to prepare. I even asked the nurses if they thought I should recall my brother and SIL from their vacation, they said no, not yet. But their feeling is that this is more than treatment related.

We'll just take it a day at a home, and hope for that day in a weeks time or so where I look back on this and scoff at my worry!

Hugs to all,

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

dano

Hi Liz;
I started on the same treatment as your mom, it is an effective treatment for this cancer but has a lot of side effects and I felt like I had them all, I was a mess. But after 2 months my lymph nodes started enlarging and they stopped treatment and shifted treatment to my brain mets with radiation. After that they started me on Alimta which was a lot easier on me.

I am very impressed with the way you are handling all the pressures and poignant moments with your mom. Staying friendly with nurses and staff, don't forget to bring them treats! You are doing such a great job which shows what a great job your mom did with you, so much love for each other.

God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Liz,

He had the same combo as his first line treatment. He'd have chemo on a Monday, crash by Thursday, and start to become himself again late Sunday night. This WAS the regimen that caused the most anxiety, but I didn't see him revert age-wise at any point in his journey. He also was never incontinent. His brother became incontinent and that was pretty close to the end of his journey.

What is the doctor saying about this issue? I think steroids and brain rads cause all kinds of strange things for the patients. My husband was never on steroids except for a day before, the day of, and the day after while on certain lines of therapy. Other's will have a lot more info about steroids and what they can do. He also never had brain mets, so didn't go through all of the rads and steroids.

I'm so very sorry sweetie --- what a terrible time you are going through. Being a woman, I know all about those "gut feelings". (No offense to the guys here!) Sometimes we are right on the mark with them. I hope not for your sake.

Many hugs and prayers continue,
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, and Dan, thank you both...

PBJ, your husbands timeline sounds like my moms!

First off, mom was much better when I got there yesterday afternoon. She as sitting in her chair, she used the walker (and nurse assist) to go to the bathroom, and to the kitchen where she ate at the table for the first time in about a week.

So Friday the chemo, Tuesday was total crash, and Thursday she's coming back. Seems like that matches your husband.

The worst of that gut feeling is gone, but I am still preparing myself (is that even possible???) for a sooner than expected journey's end.

Re her incontinence, it is bladder issues combined with the odd mental things (leaving water running, feeling foggy) that got her to the Dr in the first place. Her samples grow bacteria, she takes antibiotics, but her symptoms worsen...another sample, more bacteria, more antibiotics...she gets' worse. Last week they got a catheterized sample, NO bacteria growth. All along they have said this could from the mets, but mom doesn't believe it. So she has an appnt w/ the urologist on the 4th, if she feels up to going.

As for me, I am so tired. My local brother and SIL are way up north on vacation for 2 weeks, I am supporting that just as he supported mine. In some ways it is easier for me cause mom is at The Gathering. But we are stopping the lease on her apartment and there's alot of work there. This week has been exhausting. I get up every day at 4:15 (that's normal), head over to mom's after work to spend some time with her, so some things related to the packing/move, and don't get home until after 10 at night. It's starting to take its toll, and I know I have to take care of myself, but boy it can be hard when there is so much to do! I am getting tons of help too, from my husband, other family members and mom's friends and neighbors. I don't know what I'd do without them.

Speaking of Dale, he has been so wonderful throughout all this. I've been crying more and more and more, and he just holds me, doesn't even say anything, except "I know" to whatever I babble out.

And I know this is the wrong forum, but Dale is in the midst of Prostate concerns, in fact my thread on that forum started before this one did. The day his second PSA results came in showing a down trend was the very day my brother and I took mom to the dr and we found the spots on her lung and brain. I went from crying with relief one minute to total shock and numbness 3 hours later.

Anyway, he had another PSA test last week, and we are meeting with the urologist this morning to find the results and what our next step will be. We are praying for a continuing down trend. (His PSA was 30, then 13, then 10, now????)

So say a prayer for him, please!

Hugs to all,

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

LizNDale

Quick update, (wrong forum I know), Dales' PSA continues to trend down is now 8.3. It's been long enough now though that Dr feels a biopsy is the prudent next step, but also feels very strongly that we are dealing with BPH, and not cancer.
_________________
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

Ckim · Experienced user Joined: 15 Aug 2008 Posts: 55

I'm sorry to hear about what your family is going through.

Happy though that she has you and her family around her and can be in a peaceful place to think things through.

Chemo is doable. Brain radiation can be very difficult but it can be done.

The fact that the cancer has not spread to the bones is a positive thing to consider in terms of treatment. Always have hope, always try.

At the same time, PBJ has some good advice too. Sometimes there is only a limited amount of time left and it is a valid consideration whether to spend that time receiving treatment or just making each day count as much as possible.

there are some too who go through treatment and opt to stop. After the treatment stops, they rally, as they are not filled with the chemo anymore and their overall health improved even as the cancer is spreading.

Cancer takes away so much control that sometimes the decision to just make the best of it can be very liberating.

Whatever path your mom takes, it can be like a roller coaster or like you said-- walking under water.

I urge you to find someone outside this situation to whom you can turn when you need support so that you can be there for your mom.

I hope she does really well on the chemo and radiation and you get her back for as long as you can!

LizNDale

Thank you Ckim,

Not much change in the last few days, she sleeps alot and gets discouraged with her weakness. She is glad she has only one more chemo left, and is absolutely sure she wants to have it.

Thankfully her whole brain radiation is behind her. After the last chemo on the 5th, she'll have more scans and we'll find out if the rad worked on her brain lesions. She has 10. Depending on the results, radiotherapy may be an option.

The last scans shows lung tumors had shrunk but adrenal tumors appeared to have grown, but her onc did not rule out swelling.

She is still on 16 mg of decadron a day, they will begin to wean her off after the 5th. We'll watch to see if she loses the left side again. The decadron is probably contributing to her overall weakness, and that is what we have told her. That and the chemo, and probably even the rads. Her last WBR was July 8th.

She takes that in, and it helps lessen the dissapointment she feels in herself, but every day it's harder for her. Again though, she is adamant about this last Chemo and if her blood tests are good and the onc thinks she can stand it, she'll have it. She wants to fight this with everything she has.

Yesterday she moved into a much bigger room at The Gathering, and I think she likes that much better. Feels more like an apt than a hospital room. I moved all of her stuff from her original brownstone apartment into storage this week. It's sad, but it had to be done.

I've spent every evening with her, reading to her, lots of hugging and "I love you"s. As close as we've always been we're getting even closer and I treasure that. I touch her constantly, and she almost purrs!

My local brother and SIL will be coming home from their vacation this weekend, and while I gladly took on everything that needed to be done these last 2 weeks, I'll be very glad to have them back!

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

dano

Liz
I want to send as much love as possible your way and give some to your mom, I'm praying for you. I love hearing your reports of your mom, it is real encouraging to us all. Let her know if you can that her attitude helps us all.
God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

LizNDale

Thank you Dano, and right back at'cha!

And I will tell her what you said, it won't be the first time I've shared something you've written with her! It means a lot to her, I think especially since you two are fighting a very similar battle. I should have told you that before!

Yesterday when I told her how much I admire her, she said "You say that a lot". I told her it was because it's true. She seemed almost skeptical. She hates so much of what is going on with her personal dignity. Hates that she is essentially incontinent and has to be pottied by someone else, wiped by someone else, washed by someone else, dressed by someone else, everything has to come from someone else. But I told her it's her attitude towards those things that make me admire her so much, because you'd NEVER KNOW that she felt that way! She accepts everything with grace and gratitude and does not show self-pity. I said "I don't think I could handle these things with the grace that you..." I interrupted myself because as I was speaking it dawned on me she was digging for gold (with a kleenex) and doing it with a vengence. It struck me so funny, I pointed it out and oh man did we have a good laugh!!

God Bless you Dano, hang tough, and don't hesitate to go for the gold!

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

LizNDale

Well, Friday is Chemo, she wants it, but I think there is a strong chance they won't let her have it.

She is so weak, her nurses say she has no muscle tone, she is starting to refuse physical therapy, she is in bed now all day, and her concept of time is essentially gone.

Yesterday when I told her that Chemo is up to her, that she does not have to have this final one, she said "But I need it to get cured", then followed it with "well, for as cured as I'm going to get". So I know she's not in complete denial. That is the first time she has qualified the "cure" statement. I don't know if that's a good thing or not!

I feel I should warn her that they might say she is too weak for chemo, help prepare her for that, should I? Cause the last time that happened, she was devestated. I also think if she's going to have the final chemo, let's do it and get it done with so she can get on to the business of gaining her strength back.

When is enough, enough?

Edit *** I'm NOT going to say anything to mom, instead I'll just be there for her if she is turned down. Don't know what the heck I'm thinking.

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

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Liz,

Quite the conundrum. You are right -- take her and let the professionals make the call. Has she had any further scans to see if this treatment is working?

If it is the chemo that is knocking her down, they may postpone or do some scans to see if it's been effective. If not, they may switch out the plan for other treatment.

You'll know by what the chemo nurses or doctors tell you. If they think it's cancer related, they MAY approach you with "the talk." The doctor gave us the talk before my husband started his last line of treatment because we'd run the table on available treatments and this last one was going to be a real long-shot. Your Mom is still on first-line treatment, so I don't see this happening yet for her.

He was in pretty bad shape when he had his last chemo, but still wanted it and his counts were always good, so they never postponed it. The nurses did approach him and finally brought up the hospice word at that treatment session. Like I said, he still went through with the treatment and passed three days later.

These folks are fighters and have grit that I've never witnessed before in my life and your Mom sounds like one of them. Rarely do they reveal that fear in them that things may not work out in the best way possible. It's tricky business as a caregiver because you don't want to send any signals that you are giving up on them, but you have deep fears about what the end result WILL be. I don't envy you walking that tight-rope --- been there, done that.

Hang in there and let her lead. Always remember, as long as your loved one's are sound of mind, that it is their choices and we have to support whatever choice they DO make. In a world that is so out of control for them, they want to maintain what little control they still do have.

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

Ckim · Experienced user Joined: 15 Aug 2008 Posts: 55

Two weeks ago, I was pretty sure that my dad was a goner. He was soooo weak, could not stand on his own, his breathing was labored even with oxygen and he wasn't really "with us." I was sure that they wouldn't give him the second treatment of Alimta--

But they did.

Two weeks later (and with the oxycontin banned--that was making him so out of it) his breathing is getting better!

They told us that we wouldn't know until the second treatment and so it's been a little over two weeks since that second treatment and there is improvement.

He still needs help to do anything and everything, but I can tell that he is breathing better.

I know that it seems really hopeless at times and it is painful to watch a loved one suffer. But, have hope.

And when that is too painful, we will hope for you.

Sending prayers for strength for you both.

LizNDale

Thanks PBJ and CKIM....

Man, I hate this.

I didn't say anything to her, she mentioned she is more anxious about pre-chemo meeting with Dr than the chemo itself. So I think she must already be preparing herself.

The Gathering nurses are sending a report and so are the physical therapists.

They weren't able to give her any therapy today amd they have used to use a hoyer for every transfer today.

Her sister is coming into town tomorrow, Mom wanted to be there for her last chemo since she was there for her first!

Thank you and God Bless you both,

In Hope (always!)

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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