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Reluctant to post


Elaine

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Hello my dear friends

I just looked and I have not posted since the middle of August. I am so sorry. I have checked in maybe once a week and I see so many new names that I feel overwhelmed.

I do want you all to know that each of you is in my heart each day.

It is hard for me to be brief as many of you know.. but I do think I owe an update.

Last time I posted I was on my way to Iowa City to be with my 26 year old daughter who had called that day having been dxed with a brain mass.

The phone call I got from my daugher that morning was one of the most devasting moments I have had... and I have had a few...

By that afternoon, she told me that the second Dr she saw that day had been told it was benign--an acoustic nueroma. Well, when I got there, I found out the truth. The Dr. THOUGHT it was an acoustic nueroma but could not be certain.

My little girl was trying to protect me....how horrible I felt about that...

I was there for 10 days, and she had another MRI that showed no change. Her team of Drs. thought that waiting 8-10 weeks and doing another MRI would be better than her doing gamma knife or a biopsy. But it was her choice. She chose to wait.

I consulted with my neurologist who said that would be his suggestion also. However, when I finally pressed my daughter's Dr. into explaining to me why anyone had even done an MRI on my daughter to begin with, I found out that instead of passing out that night, there were several indications that she had in fact, had a seizure. Blood work and the "deep sleep" she was found in.

Well, an acoustic nueromas the size of a pea (or any size, usually) do not cause seizures. However another a brain tumor called an astrocytoma do, which is what they were hopefully going to rule out--eventually. These tumors spread throughout the brain's lining. Sometimes causing symptoms when they are too small to be seen.

(The last two sentences I wrote, I never told my daugher). SHe was relieved to not have to do anything about it ...for those 2 months.

I, on the other hand, freaked out inside. Of course I was strong when with her..but ... When I got back home, the anniversary of my own mother's death at age 30 arrived on the 31 of August.

I broke down. It was a long and painful wait for her MRI. Her Boyfriend broke up with her, the week after I left. They had been together for 4 years... and she basically supported him through his first two years of law school... what a jerk

However, that was a blessing in disguise for several reasons.. one .. it was good to know he was a jerk now.. rather than later.. and the other that my daughter did not focus soley on the what ifs of her condition.

I got to be the one to do that. As a matter of fact, she barely mentioned it. Finally. three weeks ago, she had a MRI... and no change.. so they will not do an MRi for 6 months.

I still feel unsettled in my mind about it. So I can't even think that for sure she is all right... but I can tell you that we are so thankful for the news we got that day.

To let you know something about my daughter. I am scoring SATs on line. Her MRI was to be during one of the 10 day periods when I work. I could not get her to change the appointment.

She did not want me to come. Well, I wasn't going to..but.. that day..I woke up and decided to drive to her.. I knew I could not get there for the appointment..but I could be there pretty close to when she would be done..

I made it an hour before she got home with the good news. Of course she was surprised to see me.. But what surprised me.. is that she had made a first date with a guy for 5 PM that evening. Is that confidence or what? She knew the earliest she would be done at nuerologist would be 3.. and still she made a date..

Ok my news. I had an MRI of spine and and brain a week before my daughter had her last MRI. All clear.

CT of chest.. all clear.

My counselor who did her best to get me through those 8 weeks, is also trying to help me get on with my life ( which would be great if I had a job).. but..I am doing much better.

Oh also I had a bone scan in August that showed my HPOA was about the same. No one knows why I have it and that it has not disappeared.. but a wonderful pain management Dr. added Cymbalta to my nuerontin and I am in so much better shape... hard for me to believe it.

I can't say I am pain free.. but.I can almost forget the pain most days.

The bad part is that in trying to get on with my life... I have not followed up with my nasty pulmo and I need to becasue everyone keeps telling me that maybe some of my problems are caused by my sleep apnea ..

Oh, I have the funniest story ever about the second half of my sleep study.. but.. sorry this is already so long.

I am also due for more tests before Christmas and before I run out of money to pay my COBRA.

I continue to feel the prayers that so many of you keep sending.

I send them back each morining and night. along with

love and fortitude

elaine

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Dear E~~

I'm so happy you checked in. Been a little caught up in my own drama lately, but have thought of you so often, wondering what was going on with you.

I'm sorry for all your daughter has had to go thru (and you as her mother!) but so far...so good, eh? I'll keep on hoping for something benign and easily treatable.

Reports on you sound great....something to strive for!

We're always here, Elaine...and you're part of us. Drop in anytime and keep us updated....please?Love & best thoughts with you...always.

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Elaine,

So sorry to hear about what you have been going through with your daughter.

My daughter, Sara, (the one in the pic) was diagnosed with a lesion in her brain during her sophmore year in college. Neurologists did MRI's and CT scans and decided since she was asymptomatic to just watch and wait. That was 8 years ago... it has not changed. She still goes for MRI's yearly. I wanted them to remove the lesion when they found it but due to its location, they feared it was best to leave it be and watch it. I know the stress you are feeling, I am so proud of your daughter that she is being postive and moving forward...my daughter did the same and I think it was her best coping mechanism. If you need to talk, I am here. Love, Sharon

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Elaine it is so good to hear from you. I have often asked about you and no one really knew what was going on.

I am sorry that you have to deal with more stress but very relieved to hear that both you and your daughter are doing so well.

Your daughter not wanting to worry you sounds very familiar. Could it be like mother like daughter?

Take care Elaine and please don't be a stranger around here you are truly missed. Lillian

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Elaine, it is so very good to hear from you. So many of us have wondered how you have been doing. I'm so sorry that your daughter is having problems right now. It sounds like she has a very positive attitude and is ready to deal with this. I know how very worried you must be. I am so glad to hear that your test results have been looking really good. I'll keep saying prayers for you and will add your daughter to the list!

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Elaine,

So glad you came back to share what you've been going through since August. It's much, much harder to love the patient than to BE the patient, I think. Your daughter sounds like she has a great attitude and is doing well.

Remember the old saying, "Worry is like a rocking chair: it seems like you're doing something, but you're getting no where." And I like this one especially when I'm afraid- "Worry does nothing to solve tomorrow's problems; it only robs TODAY of its joy."

Work with your counselor and try to give yourself permission to enjoy as much as you can every day without worrying about what may or may not happen down the line. Can you volunteer somewhere? I find it really puts things in perspective and helps me feel good about myslef when I am busy helping others - I think, "Wow! At least I don't have THAT problem!" Sounds Pollyana-ish, but it's not; lots of reasons why it's really good medicine to help others.

You sound like you need a big hug, so here's one...(((Betty))) :D

Come back and talk whenever you like, okay? Don't worry about long posts - say whatever you need.

Leslie

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Elaine,

I'm sorry you have been through so much the past couple months, it must have been a nightmare for you wondering about your daughter. Thanks for checking in many here were worried about you..

LCSC does keep growing and I know it can be overwhelming trying to keep up with it, I check in everyday and feel overwhelmed at times.. I am keeping you in my thoughts and praying for good health for you and your sweet daughter..

P:S Glad the ex is out of her life.

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Elaine,

I have really been worried about you girl. So glad you decided to update us. I am sorry about your daughter. It is much worse on us when our kids are sick than when we are.

It does sound like she is doing well at the moment and your scan results should be a good reason to celebrate.

We have missed you and hope you will show yourself more often as the weeks go by.

Nina

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Elaine,

I am so glad to hear from you! I have missed you so much. Wow, you have really been through alot... Sending only positive thoughts for your daughter. Sounds like you two have a beautiful relationship.

So glad to hear your scans came back with such great results.

I've been thinking of you so often, hope you can find time to post more!

TAnn

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Hi Elain,

Welcome back. It is good to hear from you. It really worrys me when we don't hear from our members for a long time. So glad you posted and you seem to be doing alright.

I am sorry to hear about your daughter but it is good news that she is atable.

Take care and post anytime. We are here to help each other.

Maryanne

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Dear Elaine,

So glad you came back and posted -- and so sorry that you've been through all this with your daughter in the meantime. She sounds strong and resilient -- just like you -- and we'll keep all movable body parts crossed for her as she goes from test time to test time. Doesn't that sound all too familiar??

Good to hear that you're doing well -- we always worry when we don't hear from someone for a long while. Hang in there and come back to us when you can -- or wish to. We need all the love and fortitude we can get...

Ellen

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((((((((HUGS to Elaine))))))))). That's all - just hugs, but about a gazillion of them.

I think of you so often, and am thrilled to hear you are feeling better.

Thank you for your wonderful note on my thread, too. I appreicate it more than you know. I miss hearing from you, but understand. I'm not here as much, either.

Come and talk to us when you can. Just take care of your kids and yourself, and know how much I care.

Love you!!

Peggy

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Elaine,

I am truly sorry that you and your daughter have been dealing with such serious issues. You both have my prayers.

I am glad you decided to write. You have been missed. And I am very happy that you are apparently doing so well. Hope the docs get the sleep apnea issues worked out ant that you continue to improve.

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