What's Next? Wife has NSCLC & multiple brain mets

mommysgirl

RLW1
My mom did not sleep much after her diagnosis, but I think it was her choice. It sounds like your wife wants to sleep but can't sleep. My mom always felt like sleeping was a waste of her time once she was diagnosed. She was always "busy" doing something. Although when I would watch her mosey around her bedroom doing things there was really no rhyme or reason to what she was doing. She would often move the same stack of magazines from one place to another. Or straighten a pile of cookbooks over and over. I guess maybe she felt like she was accomplishing something. My favorite is when she would iron her pajama's. Who irons pajama's???? The one thing that you may want to look into is a medication called Provigil. It is classified as a anti-narcoleptic(the condition where people just fall asleep) but it has been shown to help with increased energy. My mom took it for awhile and it did help, but she complained of it causing extreme dry mouth. Also her headaches. If it is headaches keeping her awake then the doctor should be able to prescribe higher doses of steroids or something for pain. My mom was always really good in the mornings and had extreme fatigue in the evenings. Hope this helps. Keep in touch, and I wish you well.
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pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

RLW,

Although my husband never had brain mets, sleep was an issue right from the diagnosis. He'd lay in bed with his little mind whirring about everything that he wouldn't express verbally to anyone. We went through Ambien, Lunesta, AmbienCR, then we began adding ativan when he would wake up at around 4:00 am. He seemed to develop a resistance to the meds over time.

I understand many people take up to 20mg of Melatonin at night to help with sleep. You start in lower doses and work your way up to no more than 20 mg. I guess there might be side effects, but I'm not sure what they are, that's why you slowly work your way up. Google it and see.

Good luck -- it's the pits being up and down all night long for both of you.

PBJ

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Hi all,
My wife has had a couple pretty good days. No bad headaches. Sleep cycle hasn't changed but I guess we've gotten used to it. When she gets up in the dark, she has minimal wobbliness and no visual issues. Maybe that's because the brain has fewer visual cues to process. With the light on, and during the day, she's wobbly and has the vision thing. A couple days ago, a tremor started in her writing hand so it looks like I'll be addressing the holiday cards. Sometimes her words don't come out right but that's not too often. Says her taste is sometimes metallic but it hasn't affected her appetite. All the symptoms are similar to those my wife's late sister had after she was diagnosed with ms. I guess the tumors and ms lesions can have similar effects.
And we go on, one day at a time ....

brainman

RLW1, it really sounds like you are a loving husband and have a wonderful family to support you and your wife through this.

The brain is an amazing organ. As you are observing, the slight difference of lights on vs lights off can make such a big difference. Yes, brain mets can have similar effects as MS. Your wife will need more support as time goes on. Is hospice or home health care involved with her care at this point?

The metallic taste your wife is experiencing is a common thing with chemotherapies and some other medications. It does make it hard for a person to find anything to eat that they can enjoy. Keep trying to find things that she can enjoy. What you do not want is for her to stop eating.

You and your wife are still in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
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RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Brainman,
Jinx'd myself yesterday when I mentioned my wife had a couple good days. Headaches returned yesterday and the vision problem, continuing to this morning. Seeing stars and flashes with her eyes closed now. Even though she slept pretty good, very unsteady today, like she hadn't slept for days. And yes, hospice is already onboard. They're due to come by again today for an in-home visit. Today is the 24th day since diagnosis. Seems the disease is moving so fast.

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Thanks to everyone, I've stopped trying to figure out "what's next" for my wife's condition. Too many unknowns - it's not simply the location of the brain mets which cause her problems but also the direction and degree the mets grow. That's a bummer, but oh well... Every new day with her is a good day.

brainman

RLW1, it is very hard to be in the unknowable area with some one you deeply love, like you are with your wife. I wish it were easy just to live one day at a time but it is so difficult. I wish we could see life as a great adventure but adventures are often frightening. I wish we got to exchange cards like poker, but we have to play with the cards life gives us. It is "a bummer." It is so unfair. But you are right, every day that you have with your wife is a gift to be treasured.

You and your wife continue to be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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

RLW,

Just a note to say you and your wife are in my thoughts. Every day does bring new challenges and you are right to treasure the moments.

Bless you,
PBJ

mommysgirl

RLW1
Just wanted to stop by and wish you a happy thanksgiving. Cherish this thanksgiving with your wife and family. Try to keep your chin up, boy how I know how hard that can be. You and your wife are in my thoughts and prayers.
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mommysgirl

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RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Hi all,
My wife hit another plateau for the last few days. She's barely able to stand notwithstanding her muscle tone and strength seems good. And her vision has deteriorated. I finally think I understand what she's been saying about her eyesight. Her brain appears to be interpreting one eye's field of view below and to the side of the other - like at a fun house. She can see fine with either eye, but not with both. I got her to wear a patch over one eye which helps but po's her no end. By mid-day, the vision with both eyes improves and by evening, she's able to read or watch tv until falling asleep. Evenings are the best time of the day for her.
Thanksgiving was hectic. I've kept my culinary skills a secret for 40 years. Now the secret is out ... Not as good as my wife's skills but nothing I can cook ever will be as good as hers. At various times during the day, I thought about each of you who might be having a Thanksgiving without a loved one being there and said a little prayer that your heart be at peace in the knowledge that your loved ones are at rest and no longer have to cook or cleanup after us.

brainman

RLW1, my mother had a primary brain cancer but had the same vision problems you describe for your wife. She could see when if she covered one eye. However, she could not see anything to her left when she used both eyes. The really strange thing is that she was totally unaware of this until she either walked into something... like a door frame... or had some one point out the problem to her.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In

RLW1,

Can i just say how truely amazing you are!. I have been following your story, But was un able to comment on anything much. You and your Wife are truely blessed, You have this undieing, self consuming deep love for each other, and it shows in your words. you have amazing family suport and help around you both, which is great. Like you said everyday- good or bad- is a blessing to be with.

I'm happy you had a fairly good thanksgiving, keep up the cooking. Wink

Be Strong, and keep your chin up. Listen (reading) your words are a pleasure, for i have some insight in your lives....Thank you.
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Thinking of you Inica

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~Car Accident- Broken Back, Ribs, Spleen
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RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Hi all,
Since Thanksgiving, my wife has had a few active days when she gets up and about - and a few when she's preferred to stay in bed. Her mental sharpness seems to be decreasing and the vision problem is now pretty much continuous. She's gotten used to wearing a patch over one eye. Either eye still sees fine - just not together. About it for now.
RLW

RLW1 · Regular Joined: 03 Nov 2007 Posts: 31

Another phase. Yesterday at o'dark'thirty, my wife got out of bed for the restroom and went down on the floor limp as a rag. I thought maybe she had a siezure but no - just no strength. And she didn't respond to my voice. Scared me so I called the hospice nurse who came and helped me get her back into bed. The night prior, my wife had slept heavily as if she had been digging ditches all day. After getting her back in bed and for the remainder of the day, her breathing was much the same - heavy, as if she was oh so tired. Refused to eat or drink until the evening and then only a little food. Today, she's mentally more alert and eating a little but I have to carry her to the restroom. Her strength/muscle control just isn't there. Hospice thinks we have started a new phase.

brainman

Oh RLW1, I am afraid that I have to agree with the hospice nurse. I think this may be the beginning of the end for your wife Sad

. It breaks my heart and I have big tears in my eyes for you and your wife. I remember how it was when my mother died. She actually died of respiratory failure caused by her brain cancer. During her last few days she too needed a lot of help to do anything.

You and your wife are in my thoughts and prayers tonight.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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