Lori Alexander's Headaches & Brain Tumor Return - MERGE

[LynnJ0516]

I think her first tumor was awhile ago, like 2001. It depends on the cancer but with many cancers as you get further and further out you don't have to get checked up as often. I just assumed she had more frequent follow up when it first happened. I think her MRIs were every other year though now, not five.

From Lori's blog "When the neurosurgeon came to me after the surgery, he told me he had never seen anything like it. There are only a few recorded ever. He told me I would have to have an MRI every five years but the recurrence is only 10%."

Maybe she was getting them more frequently despite this but I still find it strange her Neurosurgeon gave this advice after her surgery. I also find it strange that he said he had "never seen anything like this" as meningiomas are one of the most commonly found benign tumors, and I have met several other patients who had them in their pituitary region. The general consensus for standard practice around here is much sooner than five years for followup MRI. I asked my neurosurgeon if he would recommend a patient to followup every 5 years after surgery and he said no, not even if it had not shown any growth for 10 years. I know I am not a medical Doctor and it's wrong of me to question someone else's medical advice, but it just caught my eye because she and I have the same type of situation and her medical advice seemed so off. I also don't understand why she is eating "massive amounts of salt"? The whole thing is just bizarre to me, sorry!

[mockingbird]

Maybe I just thought two years was mentioned on here somewhere. I agree with you, that whole quote doesn't make sense. If it was so rare I don't believe a surgeon would recommend less frequent follow-up because they'd probably know less about how often it can recur. I'd be inclined to believe maybe she had the malignant subtype of meningioma because that's not very common (not a "few recorded ever" type thing though, I don't think) but again that doesn't match up with the less frequent follow-up. Also, I don't believe someone would recommend every five years as an *initial* follow-up, for any type of cancer. Weird. I'm kind-of inclined to think Lori misremembered or didn't understand (this was supposedly right after her surgery after all), or even twisted his words to make her case seem more dramatic.

[LynnJ0516]

Maybe I just thought two years was mentioned on here somewhere. I agree with you, that whole quote doesn't make sense. If it was so rare I don't believe a surgeon would recommend less frequent follow-up because they'd probably know less about how often it can recur. I'd be inclined to believe maybe she had the malignant subtype of meningioma because that's not very common (not a "few recorded ever" type thing though, I don't think) but again that doesn't match up with the less frequent follow-up. Also, I don't believe someone would recommend every five years as an *initial* follow-up, for any type of cancer. Weird. I'm kind-of inclined to think Lori misremembered or didn't understand (this was supposedly right after her surgery after all), or even twisted his words to make her case seem more dramatic.

Yeah, I'm with you. It seems dramatized or there is a major piece of information missing. I still cannot figure out the salt thing, I will have to ask my neuro about that too. And the carrots? So weird! :?

[lilwriter85]

Lori posted this yesterday on her blog FB page.

God's method of having older women teaching younger women is a preventative measure that helps to keep the patients healthy, thereby preventing serious epidemics. God knows what He is doing!

WTF? I think Lori has a huge ego and she must think she is God's gift to the world. Lori you aren't doing anything to prevent serious epidemics.

[CelticGoddess]

Lori posted this yesterday on her blog FB page.

WTF? I think Lori has a huge ego and she must think she is God's gift to the world. Lori you aren't doing anything to prevent serious epidemics.

Gee, and I thought it was modern medicine that prevented some epidemics. And, hate to break it to 'em, in the good old days Lori and her ilk love to wax poetic about, serious epidemics happened all the bloody time. Twarn't Titus2 women who stopped them, twas modern medicine. She's nuts.

And I get the feeling that Lori either heard what she wanted to hear from her neurologist (I see that all the time when I educated my patients) or she is just pulling shit out of her ass. Or a combination of the two.

I'll go for the combination.

[lilwriter85]

lorialexander.blogspot.com/2013/04/lifes-twists-and-turns.html

Lori is my hero, and I know that many of you feel the same way about her as she has ministered the truth of God's Word the last few years to thousands. We have loved hearing from you as to how God has worked to change marriage after marriage all based on a simple little promise of the Word, that husbands "may be won without a word by the behavior of their wives" (I Peter 3:1).

At 11:00 a.m. today Lori will be wheeled into the operating room to remove a recurring Intrasellar Meningioma which has grown up from the floor of the Sella. The Sella Turcica is like a small holding cup that houses the pituitary which dangles just below the hypothalamus of the brain. The pituitary is the essential regulator of the main hormones that run the body and Lori's pituitary is smushed like a pancake by a walnut sized tumor.

We anticipate all will go smoothly as God guides the well trained hands of the surgeon as he takes his instruments through Lori's nostrils to open up a three inch window in the front base of her skull to expose the Sella and Pituitary as the tumor falls out. The surgeon will then take all of his video game skills to avoid nicking any of the vital nerves that flow through the region, and especially the optic nerve and carotid artery which the tumor is hugging, to piece by piece excise the tumor. Please pray that he can see clearly through his little video cameras on his huge HDTV where the tumor begins so that this time he can get it all, forever. Then the surgeon will cut a piece of fat out of Lori's side and plug the hole the tumor has left. Please pray that no leakage of spinal fluid develops. It will then be off to ICU for a day and then a couple more days in the hospital.

If all goes according to plan Lori will be home Wednesday night or Thursday and then a time for recovery. There is no coughing or sneezing allowed, so no colds or flu permitted, so as not to disturb the delicate region as the pituitary will hopefully begin to dangle once again. We have been through this once nine years ago when Lori almost died, so we know the routine. It often takes 6-12 months for full recovery from brain surgery, not so much the physical, but it often does something to the psyche of the person.

As Cam, our new found Tennessee friend would say, "This is not our first rodeo." I married a woman so full of life, force and energy that she could go to graduate school, work and take care of me and many others. It was only after teaching school for three years and having four kids in six years that Lori began to break down physically. First came the parasites which were misdiagnosed by more than twenty doctors over a five year period of time, and somewhere in there she was sandwiched between two semi trucks on the 5 freeway and walked away with a fractured neck and broken coccyx.

Pain seems to have followed Lori for the past 25 years... bad pain, often debilitating stomach, head and neck pain. Yet through it all, Lori has been able to create a life for herself and family. Looking back on it, it was nothing short of heroic what Lori did to get her kids to sports, ballet, home schooling, and yearly Bible training through AWANA. Bent over in pain she would never miss a session, except for a few months when she could hardly get out of bed.

So how is it that a somewhat difficult wife can go to her husband ten years ago and say, "I want to please you!" Her stomach is killing her, her head hurts, she has an undiscovered brain tumor, and she is slowly dying because her kidneys are expelling sodium, and yet, she wants to please me! It comes down to just one thing and one thing only. Lori decided she was going to trust God at His Word and if she was to have the marriage of her dreams she would win her man without a word, by putting aside self and selfishness, and please her man.

You see, Lori believes in ALL of God's PROMISES. Each and every promise of God given to her in the Bible becomes her life blood each and every moment of the day. If God says that He will not give her more than she can handle, then sure enough, life is lived to the fullest, with or without pain. If God says He will always be with her, then she walks through all of the trials of life knowing her God lives in and through her. If Jesus promises suffering and difficulties for those who follow Him, then through her suffering God will work ALL things together for good. Lori enters into the suffering with joy and thanksgiving, knowing that her Savior will ride in soon on a white horse to free her and save her from a broken body and difficult world.

Faith... do we really know what that means? Lori does, and she shows me each and every moment through her pain and suffering what it means to depend and trust in God. My wife is my hero and I love and adore her for making my life, and the life of my family so wonderfully filled with joy in the knowledge the Lord. She makes our lives full, fun, and enjoyable, even while she cannot enjoy many of the good things in life.

So for those of you with your problems out there, and I know some of your issues are deep, and perhaps debilitating... Do what Lori does. Trust God with all your heart and lean on His promises.

If God says that we are New Creatures in Christ and that the old man is dead and buried in Christ Jesus, that our flesh is dead and we now walk in newness of life (Rom 6 & 8), then why fret. Dead things don't care, and most of this life is dead and worthless in view of eternity with Christ Jesus our Lord. So in the midst of your suffering and pain, find in God's Word all of the promises that God, the Promise Keeper has given to you, and hold on ever so tightly to them. For God's promises always come true, in His perfect timing, and His perfect will. Whatever we face today, it is just one more twist and turn that our heavenly Father is orchestrating for his children so that we may be to the praise of His glory forever and ever. For His day is coming soon... Come quickly Lord Jesus! Amen!

[mockingbird]

Protip. If you want to talk about how much you love your wife and how good she has been to you, don't say she is "somewhat difficult". I can just imagine him saying that as she goes off to surgery. Gross.

[kpmom]

I wish Lori the best in surgery today, but what a load of crap Ken wrote. I'm trying to picture someone bent over in pain coming to me and telling me they want to please me.

I think most of us would sit the person down and say, "Honey, lets get you well, or at least better, and then you can worry about me." But no, Ken accepts it as his due (God's promise). Apparently that's the only way women can have the marriage of their dreams. Not Ken's fault, take it up with God.

Also, it's a bit ironic that pain has been following Lori for 25 years, which I imagine is around the amount of time they've been married.

[outrunningzombies]

Slowly dying because her kidneys are expelling sodium? Sorry hon, but she'd be admitted before the surgery if that was really a problem. Also, telling a neurosurgeon with a minimum of 7 years of training that he is using video game skills is insulting at best.

I wish the best for Lori's surgery today. Too bad her husband is an asshat who is only nice because he has to be because people are watching now. Well, maybe not "too bad" as they really do deserve each other.

[mockingbird]

I do have a friend who was told to eat a high-sodium diet because she has chronic low blood pressure. It's not low enough to cause serious problems but she was having problems being dizzy as she stood up quickly so they thought that would help. Maybe Lori has something similar to that and they're just exaggerating the severity of the problem. Because otherwise I don't know why she was not in the hospital.

[docmom]

Here's the answer to the salt diet thing..

Oh, that's brilliant. Self diagnosing SIADH. I have recently had to care for a patient who had hypernatremia, who was having seizures. Wasn't pretty at all. No hx of seizures. That is the last thing she needs.

[lilwriter85]

I hope everything goes well with Lori's surgery. When I first read that posting by Ken, I was annoyed when he had to bring Lori wanting to please him and I rolled my eyes at the posting about Lori "ministering to thousands of women". I don't know how big her readership is, at best only maybe 100 online readers are taking her advice.

[rward]

I wish Lori the best in surgery today, but what a load of crap Ken wrote. I'm trying to picture someone bent over in pain coming to me and telling me they want to please me.

I think most of us would sit the person down and say, "Honey, lets get you well, or at least better, and then you can worry about me." But no, Ken accepts it as his due (God's promise). Apparently that's the only way women can have the marriage of their dreams. Not Ken's fault, take it up with God.

Also, it's a bit ironic that pain has been following Lori for 25 years, which I imagine is around the amount of time they've been married.

My husband will struggle through all sorts of MS stuff to make dinner for us. He loves cooking (and feeding me, it's the main way his nurturing side comes out) and getting up and doing things helps him. I don't stop him anymore, because I know how important that is to him. But I don't take that as my due, I help him as much as I can, and if I really feel it's too much for him today, I'll say something.

Ken's an asshat.

[chaotic life]

Well, that was disgusting to read.

I hope if on the day I have to ask for prayers for brain surgery for my spouse, I can say something a lot better about how I loved and cherished them than that they were precious because they ignored their own needs and took care of me at all costs *and I let them do that.*

That just makes me feel very sad for her and very disgusted by him. It's not a good thing when you say your wife has been plagued by pain and yet never took care of herself because she was so focused on you....and you, the able-bodied spouse NOT in pain think that's just terrific and grand and want to brag about it. :ew:

[lilwriter85]

From the FB page

Lori was just taken into surgery... which will last 3-4 hours. She had a bit of a tough morning, dehydrated as her kidneys keep trying to expel water and sodium to keep the brain swelling down... and she was not allowed to drink for 12 hours... but an IV has helped. Overall we remain confident in Him and know that Lori can do all things through Christ who strengthens her! Please Lord help the surgeon get it all with none of the many potential complications ! -- update from Ken

[Dysfundamental]

I wish the best for Lori's surgery today. Too bad her husband is an asshat who is only nice because he has to be because people are watching now. Well, maybe not "too bad" as they really do deserve each other.

These are his company manners! This is him being kind about his wife? This is the best he can do? He's so insulting and patronizing and self-involved, even at this moment of crisis for her. What a tool.

[DistantStar]

Does he not know that food and water are a major no-no within 12 hours of any planned surgery? Asshat.

[RachelB]

When Lori writes about her marriage, Ken comes out looking like an asshat.

When Ken writes about anything at all, Ken comes out looking like an asshat.

I wish her a successful surgery and a good recovery, and I wish she had a supportive spouse rather than an insulting one.

[lilwriter85]

Latest FB update.

"All went great" ... says the surgeon. He was able to extract the tumor and Lori is now in recovery. Thank you for all your prayers! ken

[lilwriter85]

lorialexander.blogspot.com/2013/04/we-give-thanks.html

The Alexander Family has a million things to be thankful for... none the least is for wonderful children and grand children, with one more coming very soon! Lori was able to spend Sunday afternoon with all of her children and we took lots of pictures, like the one above of Ryan, Erin and Em's. We are blessed beyond our wildest dreams in so many ways and today was another day of blessings:

-- Lori's surgery went off without a hitch, about 3:30 hours long with a highly trained neurosurgeon!

-- No fat was needed to be harvested from her side which was the biggest pain last time!

-- No spinal fluid leaks!

-- No pick line this time and no catheter!

-- No headaches or weird things coming out of anesthesia!

-- No nasal sinus packing this time!

-- No burning stomach pain that required morphine from huge doses of cortisone!

-- Lori is so far more alert and happy than with previous operations...

-- OK ... she hates the needles, the bruises, the beepings, IV's, or whatever that burning arm pain is!

and as Emma would say, "It's scary... very scary."

We are ever so thankful for all of you who have prayed for Lori and beseeched our Heavenly Father on her behalf. The gross tumor was completely removed and she says her head is so much "clearer."

We still need and covet your prayers for Lori's headaches, neck pain, tingling, and stomach aches to finally leave her alone. She needs some years of plenty to replace her many years of suffering.

We also ask for your prayers that the tumor never return again. The surgeon is concerned that tumor cells remain in the Dura, too deep to remove without causing a spinal leak, or worse things. So it looks like Lori will have an MRI in 3 months and then yearly for life to monitor the tumor's recurrence, and if it comes back... it is either back to surgery again, or radiation. Radiation would most likely kill her pituitary, then on to a number of hormone replacements the rest of her life to survive.

We thank God for His love and protection through the surgery, and getting us this far in life. We would wish for all good news, but then we would be spoiled brats if we were given everything, without having to follow by faith into all God has in store for us. We know Lori is in His perfect hands, and with that we must remain thankful and content.

Many thanks again for all your prayers, love and concern. We believe in miracles... so let's start praying that the tumor never returns!

[ILoveJellybeans]

I am glad Lori is ok. Shes a hateful person, but I would never wish anything bad on anyone.

[lilwriter85]

Thank you for all the comments and your prayers. Lori is not quite as good as yesterday pm or this morning, but is getting out of a very noisy ICU to hopefully a place with peace and quiet. The noise has been driving her crazy.

Please pray for a brief stay for Lori in the hospital as it is hard to get better in one., but thank God for doctors and nurses! We have had some great ones helping us!

Many many thanks to all our friends,

Ken

[LucySnowe]

lorialexander.blogspot.com/2013/04/lifes-twists-and-turns.html

Not snarking - what does he mean by 'allowed' and 'permitted'? Is this wry humour in the face of death being inevitable and you can't actually affect it, a la when I told Mr. Snowe earlier today that he wasn't allowed to die for a long time yet? Because 'coughing and sneezing would be extremely damaging, so we must do everything we can to keep her well and actively ensure that we do not expose her to germs' makes complete sense, but this phrasing does not.

Also, there are times in your life when you really cannot prevent yourself from coughing. (Try having bronchitis when you're in a concert hall and the orchestra is playing the quiet movement....) Is there a way to minimise this for someone who is in actual danger, rather than just being glared at by the season ticket holders?

[2xx1xy1JD]

These are his company manners! This is him being kind about his wife? This is the best he can do? He's so insulting and patronizing and self-involved, even at this moment of crisis for her. What a tool.

Lori's posts about Ken have always been passive-aggressive, and his about her tend to be self-centered with a few nasty digs. Overall, you get the sense that these people really do not like each other.

Have we ever read anything remotely positive about Ken? All I recall is endless stuff about how he NEEDS to be right, how she dies to herself so that she can submit to him instead of correcting him, him mentioning that she was a frigid bitch before she learned to submit, and him saying that he clearly enjoys the idea that his suffering wife is submitting to him and confessing that she was a "naughty girl". Sure, he's asking for prayers for Lori - because he's without a submissive slave until she recovers. Even in that moment, he STILL gets in a dig, calling her a "somewhat difficult wife" in the past, and gloating over the fact that she was in pain but still sacrificed herself for him.

What I'm NOT reading is anything about Ken being a wonderful person. She's not saying a word about how he was considerate of her feelings, or how he wanted a private moment with her before the surgery to express just how much he loved her with tears in his eyes, or how he discreetly arranged to extra help at home when she got sick, or how he naturally thinks about her comfort and seems to know just when to bring her a cup of tea without being asked, or how he dropped everything to be at her side, or how her life with him has been so great because he always respects her and gives her confidence or about how he was her rock beside her giving her emotional support through her darkest moments.

I'm hoping she sees this, because she needs to know that decent men and decent relationships do exist. The silver lining when I was going through my miscarriages and needed emergency surgery was my husband - he was exactly the way I describe in the paragraph above. THAT is why I treat him with respect - he has earned it, and he treats me with respect.

[mockingbird]

Not snarking - what does he mean by 'allowed' and 'permitted'? Is this wry humour in the face of death being inevitable and you can't actually affect it, a la when I told Mr. Snowe earlier today that he wasn't allowed to die for a long time yet? Because 'coughing and sneezing would be extremely damaging, so we must do everything we can to keep her well and actively ensure that we do not expose her to germs' makes complete sense, but this phrasing does not.

Also, there are times in your life when you really cannot prevent yourself from coughing. (Try having bronchitis when you're in a concert hall and the orchestra is playing the quiet movement....) Is there a way to minimise this for someone who is in actual danger, rather than just being glared at by the season ticket holders?

I think he was trying to be funny, but failed. I'm not sure if the danger has to do with the surgery, or the location of the tumor... maybe someone else could provide more info. I know you're not supposed to go into surgery if you have even a minor cold. (Maybe related, I know they can give stool softeners with pain meds after brain surgery because some pain meds can cause constipation and they don't want you to get a headache from that.)

ETA: Again... another bout of not questioning the doctor's decision, but if she is at that much risk of recurrence from the fact that they might not have gotten the whole tumor, why jump from MRI in three months then wait another year? Three months is pretty frequent follow-up to me. Why not expand it out more slowly like then every six months for awhile?