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

LizNDale

15 WBR down, 0 to go!!

1 Chemo down, 3 to go!

Mom had an MRI yesterday to see what that growth is on her eardrum, and I spoke with her Radiation Oncologist Dr. Vic about it tonight. He said it is definitely Not Cancer, yea!!! Probably an infection, and she should see her ENT Dr. when she and California brother get back from staying at our cabin. (they went up today, will stay until Saturday)

She also had her blood test yesterday, the neulasta shot did it's thing! All counts good, WBC high. They said that's from the Neulasta, not the ear thing.

Dr. Vic said that they will do an MRI in 2 to 3 months to see how effective the radiation has been. He expects that the small lesions will be gone and that the large lesion will have been reduced in size significantly. If this bears out, he will wait 2 more months and do another MRI. If the large lesion has not shrunk or not to the anticipated degree, he will do a second round, this time of targeted radiation.

Her next Chemo is Thursday the 17th.

Dale and I are taking 2 weeks vacation starting this Friday night and hope to stay at the cabin for most (or even all!) of it. It's only 2 hours away. My local brother and I have made a pact to do what we can to ensure the other gets to take their vacation. He and my SIL are taking 2 weeks in August. I think this is a great plan. I just have to get over being antsy if 24 hours go by without seeing my Mom!

Take care 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 · Posted: Thu Jul 24, 2008 11:55 am Post subject: Update

Mom had her 2nd chemo a week ago today, and so far so good.
But she is having some confusion with time-twice she has mixed up a.m. and p.m. And she called me at 3 this morning to tell me a planned electric outage had occured and that I should call her cell phone when I make my 8 a.m. phone call. She would never have done that before. When I asked why she's calling so early she laughed. She knew it was 3 a.m. but didn't seem to think there was anything unusual about calling then.
She's having scans next week, we're anxious to see if chemo is working and if brain mets are smaller.
She has made an earnest money payment on the 1/4 share. She really wants this! But she doesn't quite get that she has to go by a schedule, she thinks she can go up there whenever she wants. When we try to explain how it works, she gets aggitated and says this is her dream!

LizNDale · Posted: Thu Jul 24, 2008 11:57 am Post subject: Update

Mom had her 2nd chemo a week ago today, and so far so good.
But she is having some confusion with time-twice she has mixed up a.m. and p.m. And she called me at 3 this morning to tell me a planned electric outage had occured and that I should call her cell phone when I make my 8 a.m. phone call. She would never have done that before. When I asked why she's calling so early she laughed. She knew it was 3 a.m. but didn't seem to think there was anything unusual about calling then.
She's having scans next week, we're anxious to see if chemo is working and if brain mets are smaller.
She has made an earnest money payment on the 1/4 share. She really wants this! But she doesn't quite get that she has to go by a schedule, she thinks she can go up there whenever she wants. When we try to explain how it works, she gets aggitated and says this is her dream!

brainman

Liz, brain mets can do funny (strange) things sometimes. I do hope that your mother's tests she a decrease in their size and the her medical team can better control her confusion.

My mother had a primary brain cancer that had a very strange vision effect on her: If she cover one eye (either one) she could see perfectly. However, if she used both eyes, she was totally unaware of anything to her left. What was really strange is that she was unaware of this problem until she started walking into door facings. In her cause it was we who had to adjust to this new reality since there was nothing the doctors could do to correct the problem. But she did eventually recognize that she had a vision problem and would turn her head to see things that could possibly be to her left.

You and your mother continue to be in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

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

Liz, Brainman is right....brain mets do cause one to do or say things they would not normally say or do and thing you may not understand.

I realized some of this in hindsight with my mom. I recalled a conversation we had where she told me she could not fold the fitted sheets right and was upset because she couldn't fold them right. I told her, don't worry about it, I can't fold 'em right either! Shove 'em in the closet, no one will see 'em!

I wondered to myself why that would bother her, she never worried about thinkgs like that. After she passed, I learned so much from all of you folks on here and realized that among other things I had noticed, that was one the effects of the brain tumors.

LizNDale · Posted: Fri Jul 25, 2008 8:32 am Post subject: Update

Thanks Tera and Brainman,
i think I was hoping this is from treatmeant rather than mets - we thought there'd be a decrease in the mets caused rymptoms, and we didn't think we'd see new ones. Last week the oncologist told us that the symtoms that haven't gone away are likely permanent damage caused by mets, even if the mets have shrunk or even gone away. That was the first we had heard that. Mom was there, but she didn't take that in. He didn't say there could be new ones! God bless her, when asked how the meeting went, she says 'I'm doing so well, he's stopping one of the meds!' (He's weaning her off the decadron).
Her positive attitude is a wonder to behold. She has an incredible spirit, and keeps saying how blessed she is. I love and admire her so much!
_________________
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,

Good for your Mom! She sounds like a strong and determined woman. You also sound like a chip off the old block yourself!

I hope things settle down for her and this isn't permanent.

You remain in my thoughts.

Hugs,
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

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

[quote="LizNDale"
Mom was there, but she didn't take that in. He didn't say there could be new ones! God bless her, when asked how the meeting went, she says 'I'm doing so well, he's stopping one of the meds!' (He's weaning her off the decadron).

She sounds blessed too and how lucky she is to be able to put all the trust in you, to handle it all!......Heavy though isn't it?

I hope also it settles itself and doesnt become permanent...Sending your lovely mum and you a hug......God Bless, Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

dano

Hello Liz;
I've been reading your posts and getting caught up, it seems so far so good considering where you all are at. I love your Mom's attitude, she wanted to fight from the beginning, quiting without trying was no option for her, she had to try. But the chemo thing and the radiation are something we mostly get over. I started with the same chemo treatments that your Mom did, after about 4 treatments it seemed it quit working, They stopped chemo, started the full brain radiation for 2 weeks, Radiation went fine, I just have a little trouble hearing now. The next set of chemo treatments seemed better using Alimta, smaller bag and less than half the time spent in chemo. It is so important to us ea lot of fluids after chemo to wash the stuff out of your system, I feel pretty good after a week, learning to handle slowly the feelings that you have as a patient and trying to have a normal life again. I'm so glad that you followed her wishes to purchase the property, she needs something to look forward to, and it keeps her spirits up. You can sell it or what ever if she passes on but, I think she may be around to see the place, and your support through this will mean a lot to her. It sounds like your Mom had a lot more energy than I do, I think she may surprise everybody.
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

LizNDale

PBJ, thanks, I really appreciate it.

Koik, God Bless you, you amaze me, I can't even think about you and Daniel without welling up with tears - making it hard to type! And not tears of just sadness, but of so many emotions that are over the map. And that you post to me and others during this time exemplifies your generous and truly giving spirit - when this journey started, I knew that would be blessings on the way, blessings that would not have happened otherwise. I wondered (and still wonder) what these might be, kind of like waiting to see little Christmas presents are coming - Koik, you are one of the blessings that I have received, for which I give thanks to God.

Yes, you are right, it is heavy. it is hard, and I know it will get harder. In many ways we have had it pretty easy.

Dan - THANK YOU so much for posting... you give me hope.

All - Mom had CT and MRI yesterday, and we will be meeting with oncologist tomorrow. If her lungs are responding to the chemo, we will proceed with the 3rd and 4th bout.

Mom's energy has declined rapidly this last week. I saw her Monday for the first time, as Dale and I were on vacation for 2 weeks. I talked to her every day, and she sounded quite good, but I was shocked when I saw her.

I want/need to post more, but have a meeting I need to prepare for so will post more at lunch.

God Bless all of you, this forum is one of the most beautiful blessings I've been given.

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

Mom had CT and MRI yesterday, we meet with oncologist tomorrow to find out how the treatment is working.

Mom is very, very weak. Yesterday wiped her out, not only the scans but later on she went for ultrasound on her leg, as her ankles - particularily her left- was very swollen, and I was worried about blood clot.

I saw mom Monday for the first time in 2 weeks. She is in assisted living now, and her bed totally sucks, sorry about the bad word. She has fallen at least 5 times getting out, cause her butt just slides right off the mattress. She says (with a laugh) that she presses her alert button as she's going! So we bought her a much better box spring and mattress with tons of support around the edge, and moved the bed over so she can get out on her right side (her left side is so weak, leg and arm essentially useless). Both of these helped a lot, she hasn't fallen since.

When we put in the new mattresses, we tired her out even more by making her practice getting in and out on her own so we could see it would be better. It was during this that we noticed how swollen her left ankle is, and also how yellow her skin is, really a weird waxy color.

So I called her oncol yesterday morning, and they wanted the ultrasound
just in case of bloodclot, which was negative. Not sure about the yellow skin, they'll check her liver function tomorrow. She also said it is not uncommon for pigment changes during chemo. Can anyone comment on that?

She gets easily overwhelmed with things, we knwo when she is anxious whene she puffs up her cheeks, opens her eyes wide, purses her lips and blows. And she does that more and more.

Monday night I could not sleep, everytime I closed my eyes, she's all I'd see. This lovely, independant, talented, active lady with the now bald head, essentially useless left side, who is most times helpless as a child...It just totally sucks - I hate thinking of her as pitiful, but that's what she is! It's so shocking, it's so heart rending, to see the changes in her- and how fast! All the changes in her life and abilities, and she takes them all with grace, and almost 0 self pity. (Which is why I hate to think of her as pitiful - she sure doesn't!) She tolerates the loss of her modesty as she needs assistance showering, from a male aid - or her kids to help her with her Depends (she still has major potty issues) - This always neat woman has lost the energy and ability to just pick up after herself, so her new, small apartment gets cluttered so easily, until one of us gets it picked up (major cleaning is part of her service, thank goodness!)- when it's picked up she says "oh that feels so much better".

I feel guilty, here I am telling of my distress at what she has lost (temporarily please!!!), while others reading this and/or posting to this board are seeing/experiencing much worse! But it is so new to me, so unreal, so fast, so Evil or Very Mad

so *&%$# UNFAIR!!!

Ok, there, better now - but man it's hard!

Well, we anticipate good news tomorrow, I'll share it as son as I can.

Thanks and God Bless each and everyone of you wonderful people, posters and lurkers all.
_________________
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

Hey Liz,

That is WHAT this board is about! A place for questions, concerns, support, venting, meltdowns, grief, and anything else you can think of doing!

Our oncologist wore a big pin on his "doctor" jacket that said "Cancer sucks", so I figure sucks worked for me too.

I hope you feel better and that we hear good news today.

Hugs,
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

simplyklb

My dad has SCLC- extensive disease. He is in a weakened state from the cancer and the treatment. We have palliative care since June 15th. It has helped us immensely! Dad's nurse comes in twice a week. He has a bath aide that comes in three times a week. Dad has a walker, transport wheelchair, commode, and hospital bed. It makes life easier for all of us. There's no way I can help my dad with lifting and getting him up. I can help in many other ways tho. I look at these things making him more independent not dependent. You might look into things that will make your mom more independent evn tho she is in assisted living. The oncologist had to stop Dad's treatments because they were making him sooo sick. My dad's days of harsh treatment are over. The onc is going to keep an eye on him but will consider much less harsh treatments if need be.

Yes, cancer sucks BIG TIME!!

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

LizNDale

Mixed Reviews!

Her lung tumors have shrunk, this is great news!

Her adrenal tumors appear to have grown which he says is perplexing - that it is rare for one area to respond and for another to worsen. He says it may be swelling they are seeing, so we are take that with a grain if salt.

The MRI shows no changes to brain lesions, other than 2 small tumors are bigger. But really, she had the MRI rather early, and will have one again in about 5 weeks when we'll get a truer picture of the benefits of the WBR.

She is weaker today, and fell 3 times during the night and once when I was standing right with her. I tired to stop her but couldn't and was unable to help her get up, we had to use her call button. It gratified me to see how quickly the 3 aids showed up.

She has some confusion as well, especially dealing with Time.

So we talked about all the above in deciding future treatment. Oncologist asked her how she felt about more Chemo, she said "Yes, I want to get rid of this cancer, how else would I?" So he told her that he wanted to be clear, he didn't want to be the bad guy, but sometimes he has to, we're not talking about a total cure situation here, we can only try to control it, she nodded and said she understood. Later she said the same thing again, and he reiterated, saying he needed to make sure she understood, and she nodded her head and said she understood.

At one point he said "this is going to last a year, and you could be pretty much like you are (weakness, etc) now if not more so for about half that." I think this his way of telling us how long he figures she has. But what a way to put it!

She said she wants to go ahead with the chemo, she has to keep fighting, so God Bless her. We are upping her level of care at assisted living quite extensively.

On the way back to her place, she gave 2 big deep breaths, then said "He doesn't mince words, does he? He tells it like it is. There are no false hopes." But she still is going to fight, she hasn't lost her sprit, she wants to fight this battle as hard as she can.

God Bless her. What a lady!

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

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 352

Hi Lizy
Ditto: CANCER SUCKS!

Well it seems you are already for the roller-coaster ride. A positive attitude is the most importance, when it comes for the battle...You cant win with-out it.
Its so sad hearing she is falling out of the bed..but I experienced this with Daniel because when he got confused he used to pull all the drips out and get up to go to the toilet...Dignity..I used to find him on the floor not being able to move... Crying or Very sad

Last time he slit the top of his eyebrow badly and had to have some stitches..that was 6 weeks ago now. Crying or Very sad

All this is heartbreaking..Have courage
Eat,drink,sleep and make merry jokes with your mum...I have so many jokes with my husband..Every day I make fun with him, if he cant speak he raises an eyebrow to me.
Its all about getting through the days ahead. They go quicker than you think.
Try to plan a nice trip for your mum, its really helps for someone ill to have something to work towards...If they have nothing to look forward to, its harder to encourage them forward...
God Bless you and your mum...Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

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