The Fabulous Migraine Underworld
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Post  Sara79 Mon 09 Dec 2013, 4:44 am

Would you all please keep me and my family in your thoughts/prayers/well wishes, please.  My mother in law has metastatic breast cancer, which is now in her breast, lungs, brain, and bones.  She's recently declined to the point where she can no longer make the flight of stairs at her home to get to the bedrooms.  

We thought that we were going to lose her last Christmas, but she had a great improvement, and had been in good spirits and without unbearable symptoms until a couple of weeks ago, which we viewed as a gift and blessing, so long as she felt well and was in good spirits.  

We are flying out to spend time with her on Friday, and I'm worried about what we'll see when we get there.  One of the ladies at the church is an oncology nurse, and she's been amazing to the entire family, but she's been hinting about the decline more than she had in the past.

I'm not the best flyer, every time DH and I fly somewhere there's some sort of tale to tell.  We've ran through an airport to catch our connection, and the only reason we made it was because one of our flight crew was trying to make the same connection.  I've had to make a police statement upon landing, I was the first witness to a disgusting issue in the lavatory.  I've traveled through the remnants of hurricanes.

After all that I usually have a migraine when I'm planning to fly.  Add that to the worry and stress about my MIL, and I'm almost certain that I'll be having at least one bad head day.

Thanks for keeping me in your thoughts!


Last edited by Sara79 on Wed 26 Mar 2014, 10:59 pm; edited 3 times in total (Reason for editing : update the title yet again)

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Post  Cluelesskitty Mon 09 Dec 2013, 6:59 pm

Oh no Sara, what a sad news. I sincerely hope you guys will be given the gift of family Christmas together again.
Have a safe and uneventful, boring, ordinary flight Sara! so boring you'll snore right thru it!
Hugs, sweetheart.

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Post  Sara79 Wed 11 Dec 2013, 12:38 pm

Thank you Risa.

Yesterday we got more news...she went in for uncontrolled pain and swelling in her legs.  They did a stat CT and MRI, but both were inconclusive.  They are fairly certain that the chemo she's been on is no longer effective, and this was probably the last chemo that would work for her type of cancer that she hadn't already used.

We're pushing to get her to see a neurologist/pain specialist, and we're getting the ball rolling for hospice care again.  She had been on it starting in October of 2012, but she improved to a point that they told her she could be palliative (still a fatal outcome, but not expected to die in the next 3-6 months), but she was doing to well to stay on hospice.  It's funny/sad that they basically told us she's dying too slowly for hospice.

We honestly didn't expect to still have her with us at this point.  Every day she had since last Christmas that she's feeling decent, and has been enjoying life is an amazing present, and we've tried to treasure them all.  

It's been hard because my husband's family is all over the globe, and trying to get family out to her can take longer than just a quick road trip, which is all we have to do to visit my family.  DH and I are in Kansas, my in-laws are in Oregon, my brother in law is with the Air Force-his base is in Wyoming but he's currently deployed to South Korea, my sister in law has immigrated to Australia with her husband, and my MIL's family is Canadian, so they're all scattered across Alberta.

Anyways, in part I wanted to update you all, but I also just needed to get it off my chest, and there are few people better at being supportive of people we've never met in person than all of you here.

Take care everybody, I probably won't be on here again before Monday night, but I'll get an update on here when I can.

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Post  Cluelesskitty Fri 13 Dec 2013, 4:45 am

I know what you mean Sara - my family is too, spread over three continents - Europe, America and Australia.
I had no idea you have some family in Canada, I am next to Alberta in BC and I think Ruth is from Calgary or Edmonton, I can't remember which exactly but for sure from AB.
She sometimes complain from famous chinook that wreak havoc with her migraines. btw, we haven't heard from Ruth in a long time, I winder how is shed doing now - hopefully alright.

Sara, I sincerely hope you surely got to  spend at least one more Christmas with your Mom in Law. She sounds like  quite a mighty fighter,
and if I ever hear a battle yell - a roar! -  "I'll show you yet !!" complete with a  ladylike   birdie ;)I have an inkling what direction it might
have  come from Smile

Hang in there sweetheart. let us know how was the flight - it's Friday already. I will be awaiting news from you, whenevr you'll be able
to pop in here.
Hugs hugs hugs.

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Post  Sara79 Tue 17 Dec 2013, 4:13 am

Hello all-

I'm home again, and wanted to get back here and thank you all. It was an excellent weekend. My MIL was in excellent spirits, and was surprised by our appearance (we kept it a surprise visit for Christmas).


All my flights were uneventful- some turbulence, but no police reports upon landing, which I had to do on one of my flights previously. We were blessed with being able to have the 3rd seat in our row empty on all of our flights, which is amazing, since it means you have a little elbow room, and that the flights weren't packed to capacity as they've been doing lately.


Seeing how poorly Lenora's mobility was on Friday I was really concerned. I wasn't sure how she was getting around well enough to take care of her basic hygiene needs. I think that either DH and I being hands and feet helped or that we were pushing her medication compliance, because by Monday morning she was managing so much better. She hesitates to take her pain medication, and then gets frustrated that she feels too poorly to take care of household tasks like the dishes.

I did just throw out an e-mail to the angel that's been local and helping us. I wondered if the National Honor's society would be able to send over a high school student to help with cooking, laundry and being Lenora's hands and feet after school. We're not looking for someone to do anything medical (other than maybe fetch a bottle of pills for her), but to be there so she doesn't overdo it trying to keep up on the house.


I hope you all had a good weekend too!


Ruth- it sure would be nice if you are able to let us know how you're doing, but I know how hard that is at time of year. No matter what, take care of yourself!

Risa- we've been to Vancouver, it's a gorgeous area of the world, and in your province, but I'm glad that I'm on the edges of the suburban area surrounding Kansas City. I seem to prefer suburban/rural to urban living. I think I prefer having elbow space.

Take care everybody and thank you for the Voodoo Chicken Shaking! There were a few times this weekend I'd take a deep breath and remember you all were doing so for me!

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Post  Sara79 Thu 13 Feb 2014, 6:42 am

So...another update.  Lenora ended up having a month off chemo, and had a wonderful month, her energy improved, and she's been able to make it upstairs again.  However, about three weeks ago she started another type of chemo.  She had one treatment, and things got VERY bad.  She had so little energy that she'd fall asleep mid-sentence.  


Monday she decided she's finished taking chemo.  She's made the decision that she'd rather have shorter time left with a better quality of life.  


My FIL isn't handling this well, he's not very stable in the first place, and the thought of being a widower is freaking him out.  DH understands and respects her decision, but is hurting, and the angel who has been a rock for the family is struggling with everything too.  I feel stuck between wanting to help everyone out, and knowing that, even though it's made everyone hurt, this is the BEST choice she could have made for herself.  


Seeing how well she'd felt while she was off chemo, and how much the 'old' Lenora came back (the one before all the chemo and sickness), I want that for her, even if it means we won't have her in our life as long.  I pray that she'll get some measure of that energy back, and won't have much pain between now and the end.


Anyways, I knew you all would shake your chickens for my family, and I needed somewhere where I could say all this, and know that someone was listening, but wouldn't care if I needed to sob while I was sharing.  I'm so glad I've found this place, somewhere that any of us can share anything going on, the good, the bad, and the really really ugly, and get only support from each other.


Please, please, hug someone you love for me.  Tell them you love them, just for being them.

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Post  7777Trinity Thu 13 Feb 2014, 9:24 am

Sara
I think your MIL made the right decision too! A prolonged painful life vs. a shorter less painful life; it doesn't take much to see why she made that choice.

I made that choice in 1997 with breast cancer in both breasts. I opted for "cut, clean and get out". My mother was a nurse and when she had lung cancer she made the same decision. She lived 10 more years and 8 of them were wonderful. She always told me that chemo would leave her dead in a year with the cancer she had at the time.

So I made my decision based on what I saw her do. It's been 17 years and so far still no return. I try to live each day as a gift. Although with the migraine monster increasing in frequency, some days that isn't an option Smile

I understand about flying too, any kind of prolonged travel is a trigger for me. I hope your weather clears up soon and the migraine leaves. Today I woke up after 3 days straight of the monster, waiting to see what this head cracking pain I have this morning is going to do, leave or jump me again.

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Post  Sara79 Thu 13 Feb 2014, 7:36 pm

Thank you Trinity!

I'm glad you've done so well with your cancer. It helps hearing other people's more successful stories. I've also been lucky that work's given me nearly a month where I've been assigned somewhere other than our Hem/Onc unit. I walked into a room and caught part of a quality vs quantity family discussion...I kept my cool until I left the room, but it wasn't easy. I think the coworker who saw me losing it filled in my bosses, and they moved me over to our cardiac care area. Another thing to count as a blessing, amazing co-workers.

Weather wise, we've been really really cold for our normal, but the weather hasn't been too bad for Feb in Kansas.  I'm glad I don't live further East or South, because they're really struggling, but we're only a little off normal.  We have had school cancelled quite a bit, but it was more the cold+wind chill, and a few days where the buses weren't able to safely pick up the more rural students.  The kids were really happy about it, but I think they'll regret it in June when school has to run longer for make up days.

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Post  Cluelesskitty Fri 14 Feb 2014, 3:29 pm

Sara, I am so sorry you guys have to struggle with such an impossible future.
I'd cling to hope, though -you yourself said Lenora is such a tough chick Wink
She may surprise us all, I believe it in my heart!

An army of voodoo chickens for good luck!!

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Post  Sara79 Sun 16 Feb 2014, 8:53 am

Thank you everybody. The family's getting back to the usually level of insane, now that they've had some time to accept her choice. I also think that my FIL taking to his dad helped, and I'm glad that they got to have the talk.

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Post  Sara79 Thu 13 Mar 2014, 4:04 am

Well, Lenora is back on hospice.  Back when things first declined they had her on hospice, but then she was doing so well that they told her she needed palliative care, not hospice (palliative means it's fatal, but not 'soon;' hospice is for the last 3-6 months typically)

She's needed more morphine in the last week, and now she needs oxygen for shortness of breath even when resting.  DH and both of his siblings are there with their parents, and Lenora held out until my BIL's overseas deployment ended, which she told my FIL afterwards was one of her goals.  He's now going to be stationed stateside.

I skyped with her tonight (I thank God for the technology that lets me see her and talk face to face), she's very bloated from the steroids they've given her to help with various symptoms, but not hurting much.  Spiritually, she's completely at peace.  She's more worried about those that she loves than her own outcome.  

Everyone involved with her care feels like she's near her end, but not at her last hours.  I'm glad we've got her in a place where she's at peace with her life and her afterlife, and I'm so grateful that the medicines help with the discomfort.

Thank you all for listening, and bringing out all the voodoo chickens for all of us.  With you all to talk to, and my family that's willing to help with anything physical they can it's been so much easier than it could be.

Thanks to all the shining stars here who are here for anybody needed it, it helps to have friends at times like this.
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Post  milo Fri 14 Mar 2014, 6:52 pm

(((((((((Hugs))))))))))
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Post  Cluelesskitty Sat 15 Mar 2014, 3:33 pm

I am so sorry {{{{ Sara }}}}, having lost few dear and near person  myself, I know what harrowing experience it is.
It's good thing to know your loving Lenora is at peace with what's going on. It does help a tiny bit. For everyone, her and you.
This is   most important, along with her having a good pain relief.

And I see that Lenore still shows her spunky personality  - she's worried about everyone else but herself,
and instead of lying down quietly like a saintly  matron she is - she's on the computer  skyping! Smile
I do not know  Lenore, but thanks to you I feel like  I do a bit after all and I love her !
Embraces from me, too, Sara, lots of hugs, hugs, hugs!

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Post  Sara79 Wed 26 Mar 2014, 11:08 pm

Last reply needed from me on this thread. Lenora passed tonight, at home, and with her husband and all three kids at her side.

Our Angel was there, she was holding Lenora's hand, she's been a sister to her in all but birth, and I started calling her 'Mom' a couple weeks ago. (Like you called all your close friends' mom when you were growing up and got past the Mrs. Smith point).

Lenora was at peace, and in as little pain as possible, hospice was amazing with staying on top of her pain. My only worry now is for my FIL, I'm doing fine, and so DH. We're sad, but we know she's no longer in pain and at peace.

Thank you all for the chickens and the prayers.

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Post  Cluelesskitty Thu 27 Mar 2014, 2:50 pm

I am so sorry Sara. I am sure it must have been very difficult.
I can't find words that would relay how sad and sorry I am  for you and your family  right now.
Helen Keller said something beautiful that touched me and I hope this will comfort you even if a bit, too:
"What we have once enjoyed, we can never lose. All that we love deeply becomes part of us."
Lenora is part of you now, dear Sara, she always will be,
and your memories of her, you will always have that, too. Those are forever.
Please accept my deepest condolences. I am so sorry for your loss, Sara.

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Post  30yrsofheadache Sat 29 Mar 2014, 1:10 pm

Very sad. Sounds like she had everyone she needed at the end, though. Thinking about you and your family.
Hugs,
Cindy

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Post  Cluelesskitty Sat 29 Mar 2014, 7:20 pm

Just wanted to hug you, {{{{{ Sara }}}}}

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Post  milo Sat 05 Apr 2014, 10:08 am

Sending hugs and lots of positive thoughts!!!!!
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Post  Sara79 Mon 07 Apr 2014, 3:21 am

Thank you all.  We've made it through the memorial, and the grave side is today, and is going to be very small, only family and those few members of the church who have done so much for us that we think of them as family.  All of your love and support is greatly appreciated.  

The flight to Oregon was very peaceful, I've really never had a calmer flight.  I'm so glad to finally be with my Chris, Skype is wonderful, but you can't give a hug on it.

Take care everybody, and if there's someone in your life that you can, even if it's Dora the super dog, hug someone you love for me.  Doggie hugs are wonderful soul soothers, as are hugs from small children.


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Post  Cluelesskitty Mon 07 Apr 2014, 4:04 pm

HUGS HUGS HUGS (((( Sara ))))
I hope we will see you again. Please take care, too.

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Post  Sara79 Thu 10 Apr 2014, 3:23 pm

Risa, I hope I didn't make you think I was leaving the board.  I'm not, I just no longer needed all the prayers and chickens, which was why I said that I wouldn't need to post any more.  I don't need to post any more about Lenora.  I'll still be on the board, promise.

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Post  Cluelesskitty Thu 10 Apr 2014, 9:24 pm

Ahh whew. Smile
yes Sara, that's what I understood. I thought I dunno, maybe you got depressed (which would be understandable under circumstances)
and decided to withdraw from the board, or I don't know, didn't need us anymore (as a board, too). Thank you for clearing that up!

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Post  Sara79 Fri 11 Apr 2014, 1:12 am

I'm glad I did, once I saw your post I realized the miscommunication.

We're sad, and my migraines have been worse due to stress, travel, odd meals, weird sleep, and everything else; but we're also so thankful for the love and care so many people have shown, and relieved that Lenora will never be in pain again.

I may be quiet around here while dealing with all the details, but I'm not going anywhere. Thank you for worrying.

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Post  milo Mon 14 Apr 2014, 8:30 pm

Very Happy 
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Post  Cluelesskitty Tue 15 Apr 2014, 2:36 pm

We'll be waiting Sara, for you. take care, kiddo! ((((((hugggg))))))

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