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we have a diagnosis for my DH...

Posted by trailrunner (My Page) on
Mon, Dec 18, 06 at 14:20

He has a pituitary tumor. He will now have more MRI's and other tests to determine if it is exerting pressure and/or excreting substances. He has had memory loss , great vision changes , night sweats and weight gain. He is only 59 and a very active, intelligent man. He plays jazz piano at our son's restaurant and at private parites by night and teaches Physical Chemistry at the university by day. Please keep him in your thoughts...many of you have seen his cooking skills with the wok in posted pics and his bread baking skills recently too. He is truly a gift to me, his children and all who know him. Caroline


Follow-Up Postings:

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RE: we have a diagnosis for my DH...

Caroline, my Caldera girl, I'm so sorry to hear this. I don't know much about pituitary tumors, but it doesn't sound like there is a quick and easy fix. I will pray for you and your husband.
Erin


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Oh Caroline, I'm so sorry! I will hold you and your dh in my thoughts and send you healing vibes. Your dh sounds like such a wonderful man. I can tell by your post that you cherish him as a treasure in your life. I will be thinking about you and your family.


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Caroline,
I'm so happy you posted this. I am a Pituitary tumor expert. Please don't worry.
In 1992, my mother was going through the routine MRI in order to rule out strokes, for her Alzheimers diagnosis. The doctor called us and said "I have some bad news, your mother has a brain tumor". We were so upset and the very next day we flew her to the Mayo Clinic. They didn't know if it was malignant, (Pituitary tumors rarely are), so they ran tests looking for cancer anywhere else in her body, breast, lungs, etc. They didn't find any cancer so they took the tumor out. They went through her upper lip area. The Pituitary is behind the mouth/nose area. They don't cut through the skull. They couldn't get the whole tumor because it was wrapped around veins. They said it could grow back but it didn't. She had to get MRI's for the next five years. The tumor was benign.
Try not to worry, these tumors are fairly common. Mayo Clinic was a great place to go and have it operated on. If it's big it can push on the Optic nerve and cause sight problems.
Of course go to a surgeon who does a lot of these operations. Try and not worry too much.
Donna


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Donna....you will never know what a positive charge you exerted with your post/ What a small world we live in.

seeking and sjerin...THANK YOU. What wonderful friends have developed in this "Kitchen".


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A classmate of DD2's was diagnosed with a pituitary tumor at about age 8. She had vision problems, premature signs of puberty and headaches.

She was successfully treated for a malignant tumor at St. Jude's. It's been 6 years since her diagnosis and she's considered cured.

Your family is in our prayers. Here's hoping for a successful treatment and a quick recovery.


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Caroline,
I told my sister about your DH's tumor. She also remembered that the doctor who took my mother's out said that she probably had it for 20 years!!
Donna


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trailrunner/Caroline, I can't add anything to the great posts above from personal experience of this in particular, but I know from other situations that having a diagnosis in itself can be a relief, because you know what kind of antagonist you're facing. Naming the devil, iykwim. I don't know if that's part of what you're feeling...? Or maybe not...but it sounds like he's been going through some pretty disturbing symptoms and to know what's been causing them is the first step toward repairing the situation...

Your DH sounds like a very cool guy and I'll send energies that he will be playing piano for years to come. Anyone who can play jazz piano has my infinite respect and admiration!

I don't know if the below link will be of any help to you all but I know it was helpful to many of the thousands of people who did the fundraising event I participated in last summer. It's the link to the Lance Armstrong Foundation.

Here is a link that might be useful: a small offering


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My thoughts and white light are with the both of you. I canot say enough about the treament my dad has gotten at MD Anderson Cancer center.. I highly recomend them if you can get that way. All of his other docs said there was nothing they could do. MD Anderson said.. * come talk to us* and we did and they found him a doc who was doing a new suregery for his type of cancer and dad got it and is doing well. have hope.. high hope!

Maddie


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Caroline, I am so sorry you, your DH and family are having to deal with this. I'll keep you all in my thoughts and prayers.


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Special thoughts, prayers and blessings to your husband and the whole family at this ever so stressful time. Still try to have a somewhat nice holiday.


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You are in my thoughts and prayers. My mom had breast cancer and had to have a complete mastectomy and chemo back in 1986. She is still going strong at 88. She has also survived colon cancer. Hope for the best and keep a positive attitude because you really never know.
Clare


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Hi there long time lurker, thought you could use more positive input. I am a pituitary tumor success story. I was diagnosed in college just finished my nursing degree. I am now almost 40. The tumor was benign and I was followed for 5 years with MRI and have had no problems since. It is a shock to get the news. You are in excellent care.If you need to ask questions vent or otherwise please feel free to e-mail me. I do have one piece of advice. Everyone tiptoed around the subject and I needed to talk about it and deal with it. Hope this helps and gives you some peace- Joanne


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I wish you, your DH, and your family positive wishes and thoughts at this stressful and worrisome time. May everything turn out well, may your husband have a successful recovery, may all your days be happy, healthy, and bright.
Nora


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What a wonderful way to start the day. After going on my 5 AM run with a friend and watching the beautiful sunrise I logged on to find the most remarkable notes from all of you---
mrsmarv: thank you for your positive thoughts
mskeeterbite: I too am an RN (retired) thank you for sharing your experience, every piece of info helps
aptosca: my Mom too was a successful breast cancer survivor. Thank you for thinking of me
susan; thank you for your blessings
allison: thank you too for your prayers
maddie: I am so glad your Dad had such a positive outcome, I have had other friends who had great results from MD Anderson too. thank you
flyleft: he is playing right now as I write this...our DD flies in from SLC this evening. All the kids will be with us for the holiday...family is everything to us, thank you
peacanpie: thank you for such a positive story...everyone helps.
donna_ again special thanks to you...I hope to get to Chicago someday and meet you...you are a gift. Caroline


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Caroline, My thoughts and prayers are with you and your DH I shall be praying for a full and speedy recovery.


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Oh, Caroline - I'm just "callin' out your name!" Our husbands are such wonderful gifts, aren't they! May God guide you to the right place at the right time.

Julie


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Caroline, just wanted to add my supportive thoughts and well wishes, too. I am so glad you finally have a diagnosis. And what a relief to hear of other's similar circumstances with happy endings. I bet it won't be long until he's back to his old self and making beautiful music and yummy eats again. : )

Stay strong - we're all here for you!!!

Bear Hugs, Diana


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I wanted to post the latest from the tests. DH had another type of MRI yesterday AM. They have been looking at it since and called this AM to say they think he has had the tumor a long time ( that seems to be what I am finding out on the web...1 in 5 folks have them !! ). Anyway they did a bunch more blood work and had to send it off to a special lab . They don't know what is causing the problems but don't think it is the tumor. So good news and ??? not answered. We are baking cookies and getting our lists made for the rest of the things we are making. Not going to let any of this stop the festivities. Am attaching a photo of the present we gave all the kids this year...and ourselves. I have been refinishing the piece for months. Decided I like it this way. LOL. Pics are from Great-great-great- grandpa and grandma to present.

Thank you ALL again for all the kindness in your hearts. Caroline

Photobucket - Video and Image Hosting


my Dad in the suit-

Photobucket - Video and Image Hosting

me and my Momma-

Photobucket - Video and Image Hosting


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trailrunner,
Those pituitary tumors seem to grow for years!
I love the hutch and the wonderful pictures. Have a wonderful holiday,
Donna


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What wonderful pictures. I have pictures in boxes (because we are still not in our new home) that remind me of yours because of the vintage. Just seeing them brought tears of Christmas past to my eyes. And that's a good thing. Better to have memories of loved ones then never to have had loved ones.
I haven't written in here because the experience was not the same but my DH had a thyroid tumor for years that they finally removed- it was not benign- but he is fine. I wish that for you and your DH.
Also I wish you many early AM runs. My current back issues have stopped me in my tracks and I miss my morning runs with my running buddies. Somehow those running buddies become very intimate friends and a great support team.
Anyway, my fingers are crossed- Happy Holidays.


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jilly and Donna, thank you for suchh helpful info and kind supportive words. We decided to put all this on hold til after the holiday. We have all the kids here and my DH's brother is coming in 2 days . The kitchen is working great. We have made cookies and breads and minestrone and cakes and the Miele ovens and the Caldera have all met the challenge.

My cab guy is not returning calls ( he knows and likes my DH and still won't come and finish). We will tackle all these things another day. For now we all love and support each other and that is all that is important .

This forum w/ it's wonderful members has meant a lot to me . I hope all of you have days filled with good memories . Caroline


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Caroline,
You are a lucky woman to have so much love.
Donna


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Oh my gosh...I just found the conversations side of this whole thing (where have I been??) and I just wanted to send my best wishes to your DH. Sounds like a great man just to allow you to have free rein on the kitchen remodel ;)

I hope all goes well for you in the New Year!

Best wishes--my thoughts are with you! And the hutch looks great!

Sarah


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I, too don't usually get over here to conversations, but saw your post when I came to see Jilly's train post (beautiful, BTW!). I hope he will be okay and that everything will go well for you both. You are in my thoughts.

Please keep your "kitchen friends" posted.


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Caroline -

What a magnificent, magnificent thing - your photo hutch with the generations! Wow! That is a marvelous gift for your family along with all the quality holiday time! Praying for your husband and you at this time.

Sarah and catmom - come on in, the water's fine! Just found this myself, thanks to Donna.


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Caroline, I just saw this thread and can only send you a big virtual ((((((((((((hug)))))))))). I am so sorry for this trouble and will be sending very good thoughts to you and your DH. Considering all this I can only thank you again for helping me with something that is just a thing at a time when you have more important issues to deal with.


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We are still waiting to see the Doc for the follow up of all tests. That will be 1/11. We had not gotten the results of all the bloodwork by the Friday before Christmas. It would seem that the tumor is not what is causing the biggest problem, that is his memory loss. He is aware of it and his students started noting it before the semester was over. This could have devastating consequences for his teaching , as he didnot plan on retiring for 3 more years.

We told the kids but he has not said anything to his siblings. It is not something anyone else would note right off ,as yet. I can only have one day at a time and that is how we are taking it now.

We are going back to our home , New Orleans, over the MLK holiday. We have chosen not to go back til now. We have family there and will stay with them. It will be a momentous visit as it is after the MD appt and our first time seeing our past as it is now.

BUT....it is a NEW YEAR and anything can happen and all things are possible. My brothers never were able to get past the moment. I won't be that way. Our lives are too precious. It is more important to feel everything and embrace even all the pain than to feel nothing. Thank you all for the most memorable thoughts I have ever received. I have printed them out ...against the time I might need to read them again. thank you, Caroline


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trailrunner,

I hope everything works out for you and your husband. I just wanted to log on to let you know that memory loss and all kinds of things can be caused by lots of things. My uncle, a very brilliant professor of law, started experiencing all kinds of weird things including memory loss. He was convinced it was the beginning of alzheimers but it was some kind of infection which they eventually got under control and after spiraling down physically and mentally he snapped back and went back to teaching. This is all very, very, scary for you both and I am thinking about you both and will continue to think and send good thoughts. It sounds like your focus on the preciousness of your time and your life together is exactly the right thing to be doing. I just also wanted to say that there are about a gazillion things, none of them fatal, that can lead to short term confusion and memory loss. It may just be a question of finding the right doctors and the right therapy.

all my best
abfab


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Sending hugs to all of you! My daughter in law had this, she started medication to shrink it (Mayo) as it was thought to be benign. She was ok for a year and then became ill and it was malignant. She had radiation and has been cancer free for 3 years! They want children now, it may be a challenge. Mayo is helping her through this also.

Let us know how things go for your DH


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Trailrunner, I just wanted to echo what abfab said about there being lots of possible benign causes to these symptoms. I recently read Suzanne Sommer's book "Ageless" that talks about bioidentical hormones and it mentions that for men, night sweats and weight gain are common symptoms associated with hormonal decline. But even knowing that there may be benign, treatable reasons for what your husband is experiencing doesn't make this any less scary... do I ever feel for you and hope that this experience has a very happy ending.


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We saw the neurologist this AM, so I wanted to post what was decided since everyone had such kind and helpful thoughts to share.

The MD said that the EEG was negative and that all the blood work except Cortisol ( which they can't find but will call the lab AGAIN) were normal. The tumor is 1 cm (10 mm) and is in a low position so is not causing any problems at present.

I am administering a short term cognitive test and the eye doctor is going to do an intense exam for baseline purposes next week. Then my DH is going to have a complete psychometric exam asap. All of this will be to determine the extent of the cognitive changes. Also it will give us complete baseline data. There will then be periodic f/u to see if indeed things are changing or not. MRI's annually etc.

So good news as far as organic stuff and we'll see news as far as the cognitive stuff.

Thank you all again for all the kind and supportive messages. It means so much when everything seems over-whelming.

We are headed to N.O. tomorrow and look forward to a few days away from the cont. unfinished kitchen ( no replacement cabinet guy yet) and brunch at the Court of Two Sisters on Sunday. Caroline


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Caroline,
Thanks for the update, please keep us posted. We all care about you and DH and are hoping his problem will be diagnosed soon.
Donna


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Have a wonderful trip. I will continue to keep both you and your DH in my thoughts and prayers.


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Ditto what Donna and eandhl said. Have a wonderful time in N.O.


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Hi,
I'm so sorry that you're having to deal with this-- I hope you get a resolution soon! When I found out six months ago that I had a brain tumor, we knew virtually no one socially who had neurosurgery before. I would imagine the symptoms are quite maddening--I always said, I was never the fastest, prettiest or best athlete, but I could always count on my head--it's a bit daunting to think of someone physically IN your head. My best strategy was just not thinking about the surgery at all, and buying cardigans, and zip-up tops so that I didn't have to pull clothing over my head. I've been reading this thread and was shocked at how many people in the kitchens forum have had experiences with tumors. I hope for the best for you and your family, and even if surgery is in order, it's not the worst thing in the world. It's a way to get rid of the problem--if that is the problem. I'm assuming you've had the entire battery of endocrine tests associated with pituitary tumors? I do hope that this part of the new year is treating you well--and also that your cabinets are finished? : ) When other things are going crazy, it never hurts if everything else could go right . . .


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eastsider: what a generous thing for you to post to me. I really appreciate it. My DH has had all the chemical tests and seen his MD . He was told that at this time the tumor is nonsecreting ( a good thing) and that it is low in the cavity ( a very good thing) so it is best to leave it alone. What we have at this point is a lot of baseline data so that all future tests will have a good comparison point. The worst that will happen with his tumor is that it will grow into the optic chiasm and take his vision. He is already legally blind so that would be devastating and require pursuing surgery.

as for the memory lapses he has a 5 hour !! test to take on 3/9. Again this is for baseline data. It is hard to quantify memory changes when a person is very bright. My DH is very talented as a Chemist and a musician and the Dr applauded us for wanting to get the baseline testing done now so that future tests would have meaning .

Thank you again. What is your situation with your tumor. Kind, surgery, recovery etc ? I will look forward to hearing from you and supporting you in your efforts to deal with this. Caroline


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Caroline,

I just came across your thread and wanted to say that I am so impressed with the way you are handling this situation.

Wishing you and your DH all the best.

Mari


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Thank you , Mari. I appreciate all the wonderful supportive folks on these forums. Caroline


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Hi Trailrunner,
You are so thoughtful!
I sympathize with your husband--the cognitive testing is exhausting!And when you're a bit tired and stressed, it's even more tiresome. I too am in the scientific field, which sometimes makes this a bit harder. I just stopped reading about survival rates (my daughter was seven weeks old when we found out!) and other people's stories. I keep thinking that I need to put up a "not-so-sad-brain-tumor website." I had a 5cm mixed grade oligodendroglioma/astrocytoma. I had a complete surgical resection and initially we thought that was the end of it. But after a bit of ambiguity from pathology from several institutions, found out that to be on the safe side, I needed radiation and chemo. Fortunately, recovery was a lot faster than I anticipated, and I haven't any 'souvenirs' from either surgery or treatments. It's just part of life I guess--we're so blessed in so many ways, that it's hard to remember that misfortune still exists.


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finishing up . . .

Thanks again for your concern, but things are finally moving on and getting back to normal. We were a bit hesitant about moving on with the remodel, but it's a nice distraction for us. I wish you the best and make sure you take along a good lunch for the testing--my testing was at a local hospital and the food was dreadful! Not at all what you'd consider brainfood! And be sure to tell the psychologist/examiner about any medications your husband may be taking that may alter his response time as well.


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Thanks for the tips. My DH said the psychometric MD's nurse told him to come "prepared to work!!". Fortunately he is used to sitting for hours and doing calculations. The only problem is of course his "normal" vision is poor so he will need some breaks etc for that. We will definitely take the food for lunch due to your tip.

I looked up the info on your type of glioma. I am a retired RN and it was quite interesting. They are hard to dx and it seems that the "oglio" component in your tumor is a very good thing.

You are so strong to be able to "move on", and of course what else can we do. There are only those minutes and hours that are in front of us that we can deal with. What a waste to live in the "what if" all the time ! You have a precious child and husband and life to live. Good for you. PLease keep me informed of your progress both health and remodel. I would love to see pics of the remodel. I will also let you know how the test 3/9 comes out. Thanks again. Your concern and support are very renewing to me . Caroline


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Thanks for your concern and kind words--it is a bit of cliche, but I really did take good health for granted. But I do honestly feel like myself again, and I am so thankful for that! Regarding our remodel,we're just waiting for our final permit, and will hopefully get things cooking soon! I will post pics, if we EVER get to that stage. Our county is a bit notorious for protracted permit procedures.
Again, my best to you and your husband--I couldn't have made it through any of this without my husband, and family. I know you are a wonderful source of comfort and reassurance to him, and I have a feeling that things will sort themselves out for the best. I would love to hear how the testing goes, although it seems a bit unfair for baseline testing to be after one is having problems, no?
Sending positive thoughts your way . . .


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trailrunner - I just ran across this thread during a search. Somehow, in the year I have been posting here, I did not quite grasp that there was a separate conversations side of the kitchen site. Anyway, my heart goes out to you. I see that your husband has a big test coming up on the 9th. Best wishes to you in the midst of this. I hope that the friends and family close to you are offering lots of hugs and soft shoulders. Here are a few little practical offers of support from my experience with my partner's cancer treatment (5 years healthy now) I realize that your husband's diagnosis is different, but stressful medical situations require support:

I kept a binder with a list of all the meds she was on, medical history, current test results(blood, MRI, etc.), etc. that I took to all appointments - she was really annoyed with this and most of the time this big binder just served to build up my muscles ( :) ). However, one time when we ended up in the emergency room when she had a life threatening infection, I was able to relate needed information to the doctors in spite of my stressed out state at the time. So, for all of that mileage logged carting that thing around, it proved quite useful. It also just helped me feel less overwhelmed.

My friends helped make sure that I was taking care of myself. They also went to some appointments when I couldn't.

I read somewhere a suggestion to slow down and give two kisses instead of one to help be present with each other. And for hugs there was a daily quota each person has - I think 7 hugs a day from various sources.

Scrabble became my friend. I have an electronic hand held that I can play with the machine by myself for those hours waiting for tests. The initial diagnosis was during the week of 9/11/01 and all waiting rooms had news all the time. Sometimes I just needed to disengage and Scrabble helped that. We also had a travel scrabble game for the two of us and visitors during hospital visits. With memory issues you might need a different game or activity. When the foggy head response to chemo kicked in, we switched to reading Harry Potter out loud or listening to tapes of it.

Yoga classes, breathing exercises and relaxation CD's for both of us. Check out Dr. Andrew Weil for CD's and relaxation techniques.

Funny movies, silly songs and visualizations we made up. (a variation on The Ants Go Marching Two by Two for a red colored chemo - her image was big red ants with machine guns going in after the cancer, my image was the red ants carrying the cancer away)

Anyway, I just wanted to send you warm thoughts. I know how stressful the unfinished cabinet scenario is as well as the medical concerns. The two together is quite a bit. It sounds like you also had your first return visit to NO - wow, girl! Please ask the people around you for support. The tips I gave may not provide the kind of support you need, but maybe they will spark ideas that fit you.


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trailrunner - I rarely visit the kitchen forum any more and was surprised to see your post here. You certainly have a lot going on. I am sending positive thoughts and wishes your way.

Tina


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I have been sick with a bad cold since the weekend. I was unable to sleep and decided to check in here.

Gunderson: what a kind and heart-felt post to me. I am overwhelmed by your sharing .

tina _ yes it is often strange when we see a name on another forum

Now for DH...he has cancelled the appt on 3/9. He was to have a 5 hr psychometric test. He has had a cold and cough for a month. I just got it. I was worried about us trying to go to Mongtgomery for such a long day . When I asked him about the directions etc to the place he said " oh I cancelled it ! ". I was not pleased. The bottom line is that he says that since he has started meditating he thinks the "thought processes" are better and also if there is a change - a) what can they do ? b) do I even want to know ?

I see little things that are definitely different. He has never had a temper and now does get upset when I say anything that indicates he may or has forgotten something. Also I do see him forgetting stuff that he never used to have a problem remembering.

We are very lucky to have children living nearby ( one son has just moved back home while he is training for a great new job ). The other is 15 min. away and he and his wife are here all the time plus we work at there restaurant evey week. We have very good friends at our UU fellowship also.

I have been helped by rereading the posts by everyone. It is wonderful the kindness that you all have for a complete stranger. Thank you and I will post again if there is a change but for now we will just keep on keepin' on .


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Hi trailrunner, you and your DH have offered such inspiration to us with your jolly and authentic approach to reno-ing and life in general.

I'm sending you lots of good wishes as I have no info to offer. I do know the not knowing can be hardest. Hoping for the best for you and DH.

Laila


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trailrunner,
My mother died of Alzheimer's in 2001. I am not implying that DH has it but I can only give my advice based on that being the diagnoses. IMOP there is no reason to have him diagnosed at this time. There is one drug called Aricept, which my mother was in their drug study many years ago. The drug made her deathly ill and she had to go off of it. You should look into long term care insurance right away. If DH is diagnosed, he will not qualify to get the insurance. At some point you may need some in home help. DH is very aware of his memory problems right now. A diagnosis would be devastating to him. If there was a treatment for memory loss I would say go ahead and get him diagnosed. There is not a effective treatment that I know about.
Let me give you some advice, Do not point out to him when he forgets something. I would always say, "mom, don't you remember" and it would break her heart each time. The person with the memory problem knows that they are "not right" and they are very frustrated. It is best to adopt a system of helping him throughout his day. Posting notes, etc. Also, the personality does change. Some people who have never spoken a swear word will start to cuss like a sailor. You can't fight these changes but learn to live with them.
I assume that they have tested DH for all other memory loss causes. The MRI looks for a stroke. There is not a conclusive test for Alzheimer's disease. They can only rule out all other causes and then draw their conclusions from that. The memory test is very upsetting to the person. Your DH will fight the diagnosis anyway.
Like I said, as long as all other memory causes have been ruled out I would just leave it be. If he has a memory problem it will become very apparent to you. The best advice I can give you is to enjoy both of your lives as much as you can. Learn to live with his limited memory. Don't remind him of things, it will only hurt him. My mother had a lot of enjoyment out of her life after her diagnosis. She lived in a retirement home and had a boyfriend until he passed away. They danced and laughed and were very happy. That's what you must do regardless of his diagnosis.
I hope my advice hasn't upset you. I don't know what is causing his memory loss and am not implying that he has Alzheimer's. I can only speak from my personal experience.
Donna


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Hi Trailrunner,
I was thinking about you and your husband all week, anxious to hear about the test results. The type of neurocognitive testing that I underwent tested more short-term memory and speech/thought processes. For instance the neuropsychologist would say a string of numbers and with each additional number, I'd have to add the next to the total. For example, if the examiner said "1, 3" I'd say 4, If then the examiner says 10, the next answer would be 14 and so on. There are also a lot of games that ask you to make patterns with different shaped blocks, and how to do particular tasks with as little manipulation as possible, testing your planning skills too. Depending on the type of memory loss your husband is experiencing, the testing could prove quite frustrating.
Being in science, I have a bias toward data--the more the better. I'd imagine even the psychometric testing would help. Has anyone suggested cerebro-angiography to check blood flow to the brain? Do you know what type of scanner was used for the MRIs? My last one was on a T3, which is supposed to be the state of the art, showing lots of detail previously unavailable to docs. I wish you both the best and I'm really sorry you have to go through this, and I hope for an answer for you soon! I'm so happy that you're surrounded by a loving family--it's a testament to what great parents you are! All the best . . .


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eastsider : thank you for your informative note. No I don't know what type MRI he had. It was for the dx of the pituitary tumor which will just be monitored now probably at an annual rate. As far as the memory thing I probably didn't explain it well . I appreciate organicdonna's response but that is not what he is going thru.

I think the psychometric testing would have been an ideal tool to dx any changes that appear to be happening now and also as a basis of any that might occur in the future. The explanation of the testing is what He and I expected it would be.

He is not going to do the tests at this time. He is a Chemistry prof. and jazz musician and is teaching , writing lectures and playing and writing music all the time. As you can see a) any dx would be devastating b) there would not be anything that could be done anyway c) there may not be anything going on and we are just both being hyperaware .

I truly appreciate all the supportive insight that I have received here. He and I depend on each other for all things and will cont. to do so. We will watch this ourselves and if indeed it seems that there is a deterioration going on ( which neither of us is sure about anyway) then I guess we will rethink tests. As it stands now we are busy and productive and it is counterproductive to assume the worst as far as he sees it. I am letting him "drive" at this point as he knows where his head is better than I do in many ways. Thanks again for all the wonderful and thought-filled expressions . Caroline


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RE: we have a diagnosis for my DH...

Hi Trailrunner,
Obviously, no one has thought more about this than you, your family and healthcare providers. No more diagnoses or suggestions from me--just sending good wishes your way and I hope you've kicked that cold!


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RE: we have a diagnosis for my DH...

trailrunner,
I was apprehensive about sending my post. Memory problems are very hard to diagnose. Even the top neurologists are sometimes at a loss. My mother's illnesss was very different from your DH's situation. I'm sorry I made a comparison.
I wish you and DH all the best,
Donna


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RE: we have a diagnosis for my DH...

Donna, your post was very helpful to me.

When my granddad started developing memory problems, my mother would correct him at every turn. When he would speak of my grandmother as if she were still alive, she would remind him that she had been gone for years. Her explanation was, "We can't let him think that's right if it's not" and your post made me realize this was her problem and not his.

I always thought it cruel to upset him so when simply going along with it would have been so easy and pacifying for him.

My MIL did the same with her mother, who developed dementia after breaking a hip. Perhaps it's a generational thing.

You showed your mother a great kindness- and I will remember that lesson when the time comes for me to deal with my parents and in-laws.


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RE: we have a diagnosis for my DH...

Caroline, I will continue to keep you and your DH in my thoughts. I will continue to hope for the best as well.

I have grown to care about many of you on the forum, and have an extra little special place in my heart for some of you. Caroline, you and DH are there. I wish you both the best.


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RE: we have a diagnosis for my DH...

Caroline,
I just read this thread. I have no advice or experience to share, but I wanted to let you know I'll pray for your dh's health and your strength.

doceolatin


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RE: we have a diagnosis for my DH...

It sounds odd, but congratulations on finding a diagnosis. After nearly a year with a very sick baby, we finally found a diagnosis. Not knowing what is wrong with your loved one is probably harder than knowing, no matter what the diagnosis. It sounds like your husband is a strong man, who will use his stregnth to fight through this. We'll pray for you in Alaska!


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RE: we have a diagnosis for my DH...

I also have just found the conversation part of this site and have read all the posts about your husband.

Good thoughts and prayers are going your way. My husband had some health issues in '06 and it was a trying time for us so I can appreciate a little of what you are going through. He is doing great now and I sincerely hope to hear positive news regarding your husband. Keep your chin up.

Claire


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RE: we have a diagnosis for my DH...

You all continue to be the most inspiring group and source of strength.

Donna: I admit I at first was upset by your post and had to back off and then regroup and come back. Took me a bit to admit that but wanted to be truthful since you were baring your soul too. This is fortunately a place where one can open up and I APPRECIATE that you did.

eastsider - you have provided a wealth of info as has Donna and I thank you. Just knowing there are others out there that are willing to give of their time to think about another's situation is so helpful.

peacanpie : as an RN I used to see the "reminding" all the time when I visited homes in my job. I always was sensitive to that. Funny how it is hard to "see" what we do personally vs professionally ! Thank you for your insight too. I always love all your posts.

catmom- how generous of you. thank you for including us I really feel cherished by all of you.

doceolatin: thank you at times the only words anyone needs are " I'm thinking of you".

igloochic: you are right as you have found ,just knowing the "name" of the enemy is a place to start. I certainly hold you in my thoughts also and hope that you and your family are able to get a positive movement now that you know what the dx is.

claire- thank you too. I am so pleased that you and your DH were able to come out the other side with him doing well.

All: this is such a nebulous dx. It isn't anything that we can really put our finger on. Yesterday he sat and made a ton of calculations so we could get these pictures hung on our DR...see the decorating thread if you are interested. He was never frustrated and did fine. He is meditating every day and says that helps. It is a curse and a blessing to be very bright !! He and our oldest son are going to see Blue Man group tonight ??? I think that is what they are called . Sunday night he played at a reception for the Gov of Alabama and the Korean owners of a new auto manuf. supply business that is coming to Alabama.

So he is functioning very well at present. We will see what is what as time goes on.

It makes me peaceful to know that I can say anything to you all and be accepted. That is one of the great things also about our UU fellowship. We have "joys concerns and milestones" at each service. You can speak them aloud or just light a candle and hold them silently. It is wonderful that we can say anything.

But...there is a relief present in this forum due to the anonymity . Thank you ...every one of you...thank you...Caroline


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RE: we have a diagnosis for my DH...

pecanpie,
I hope that trailrunner doesn't mind if I hijack this post to respond to you. When my mother first started showing signs of memory problems I was constantly correcting her. I would yell at her and tell her, "don't you remember"? She would cry and we would both get so upset. I didn't know anything about this disease. As the years went on I learned that her world and my world were not the same anymore. I had to join her world which was very new to me.
When she would say that she needed to go home because her parents didn't know where she was I would tell her I just spoke to them and not to worry. Then I would leave the room and cry. If she thought someone who was dead was still alive, we went along with that. In the later stages she thought my sister was her mother. We learned to not care who we were for that day. You had to sometimes laugh or you would fall apart. The hardest thing to cope with is not blaming the person who has this disease. Sometimes their personality changes and it can be very difficult. I know this subject is depressing. I also know that many people are suffering from this disease.
Donna


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RE: we have a diagnosis for my DH...

No Donna I don't mind. Anything that can help another is precious. I had first my Dad and then my Mom to take care of. It is why I left the nursing profession as I was totally burned out. I had a nervous breakdown and was not able to go anywhere alone and was barely functioning. I also became an alcoholic to deal with the problems. Of course that was not the answer but I wanted to be dulled to the world and all feelings. Time does heal us if we let it. This thread has taken on a terrific significance as did "my Momma used to"...perhaps we need to revisit that....


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RE: we have a diagnosis for my DH...

Caroline,
You have been through a lot of pain. Thank you for sharing. I tend to feel sorry for myself a lot because I don't have any family left in Chicago. I always look at other peoples lives and think they have it so much better than I do. My brother-in-law is an alcoholic so I can relate to that struggle. Life can be very difficult. This is a good place for us to share our fears. We all care for and support each other here.
I'm learning to take life one day at a time. That way getting older is not so scary.
Donna


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RE: we have a diagnosis for my DH...

Caroline,
I am so sorry for the pain you are going through. I do not usually come over to this side of the Forum, so I did not know until today. I have admired you from afar on this forum, and my admiration has only grown as I have learned of the challenges you have faced. I run a program for children with serious medical conditions (most of whom are cancer survivors), and I have close ties to both Duke and UNC hospitals, so please let me know if there is any way I can be of help to you and your husband. Lisa


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