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creekland

By creekland,
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creekland

creekland

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We found out last night that middle son has been nominated by his professors to be pointed toward prestigious fellowships/scholarships (like Fulbright and oodles of others). I know a nomination is a long way from winning anything, but it sure brings out the proud mama feelings. I knew he'd been doing very well. It's nice that other, non-related, knowledgeable, people feel that way too... needless to say I wish him well as they figure out which one(s) he's most qualified for and/or interested in.

 

Then... a few of you know I've been dealing with the knowledge that I have a brain tumor (expected to be benign)...Last night I also got the news that it is currently inoperable due to its location and the risks of surgery being worse than what I'm dealing with now. I'm ok with that - perhaps naively, but I'm ok with it - rather happy it came out that way actually.

So, my options were to wait and watch it or head toward a radiation specialist to see what they can do toward stopping growth. Since I know it is growing (based upon symptoms), we're heading toward radiation - no clue as to the time frame for that yet.

 

It's really nice getting good news for a change. (I THINK the radiation deal is good news, but I'm really rather clueless on that overall.  For now, I'm going with it!)

 

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Miss Mousie

Miss Mousie

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You show amazing restraint, Creekland.  I think a full-page NYT ad would not be out of line for a mom who hears that news about her boy.  :D

 

On the health front:  have you gotten any advice on dealing with the vision issues?  I, with all the others here, wish you the very best as you determine the best course of treatment.  {{Creekland}}

 

 

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creekland

creekland

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You show amazing restraint, Creekland.  I think a full-page NYT ad would not be out of line for a mom who hears that news about her boy.  :D

 

On the health front:  have you gotten any advice on dealing with the vision issues?  I, with all the others here, wish you the very best as you determine the best course of treatment.  {{Creekland}}

A full page ad sure would be tempting, but then middle son would disown me (he NEVER brags about himself nor wants to be seen a "different") so definitely out of the picture.  Here, and maybe with a couple of close friends at school who knew him, are the only places I can feel puffed up.  Of course, he's done it all while there - none from me - but it still gives me satisfaction to know that I didn't "ruin" him by opting to homeschool for his middle/high school years.  He also wasn't "ruined" by choosing a Research U with large freshmen classes - and living in the dorms to boot (+ joining a dance troupe, doing clubs, etc).  He knows his profs - and they evidently know him.  All of it is what he's made of it.  I am definitely proud.  It's nice seeing his dedication and talent being rewarded - even if he doesn't end up "winning" anything.

 

And I guess I sort of apologize for not letting more "in" on the brain tumor.  Heading in for vision problems thinking there's something wrong with your eyes, then finding out it's not that (one eye is 20/20, the other is 20/15 - the problem stems from the tumor, not the eyes) is a little bit of a setback.  Once it hit more "reality" in my mind, it's easier to deal with (and do some limited sharing).  Getting what I want to believe is good news about skipping surgery is a mental uplift that is more worthy of sharing - so perhaps a good point to share more openly with Hive friends/family rather than keeping secrets.

 

Note... I'm not so naïve to think that skipping surgery is 100% good when the "normal" course of action would be surgery followed by radiation, but that sort of surgery just wasn't giving me great thoughts - esp since the tumor is rather central in the head (NOT easy access and very near important parts).  If they end up deciding it's best later, then I'll deal with that then (maybe) - but at least we'll know we tried radiation first - and radiation could work, though I don't yet know the odds - or potential side effects.

 

Surgery would have had me down for a little while (a horrid thought on its own for those of us who prefer being active).  I don't think radiation does (though I know little about it at the moment).

 

I'm 100% ok living the rest of my life with the symptoms I have now if they can stop the growth.  (Double vision looking to the left/straight/down, tinnitus in my left ear, pressure on the left side when sitting, and occasional electric charges that run though my left eye area, esp when sitting again.  Everything except the electric charge feelings is actually painless and those aren't super painful, so it's all not so difficult to deal with.)  Everyone has "growing older" issues of some sort that they have to deal with.

 

I am still at school (in general - took today off to celebrate with hubby after he finishes a morning meeting).  I was discussing ionic, covalent, and metallic bonding yesterday.  ;)  Not much has changed at this point in my life - and hopefully it won't.

 

Prayers (or any good vibes) are always welcome. 

 

But also, this is more of a celebration post - the latter was just filling in more background for anyone.

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Kathy in Richmond

Kathy in Richmond

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:hurray: :hurray:  What exciting news for your middle son!! Isn't it wonderful that his profs have recognized his potential? Love his school!!

 

Creekland, I'll continue to pray daily for your good health. You are just as amazing as your kiddo in dealing with all of this, really. Glad you have a job that you like to keep your days filled.

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Miss Marple

Miss Marple

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Oh wow!  You have reason to be a proud momma!  Congratulations to your son (and you, too).  I did not know about the brain tumor.  I am so sorry you are dealing with that.  Prayers for you as you navigate these new waters.  It sounds like radiation is a good option for you.  Take care of yourself and let others help :)

 

 My dh's brother is having surgery for a hopefully benign brain tumor next week.  It's a pituitary tumor, most of which are benign.

 

 

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creekland

creekland

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:hurray: :hurray:  What exciting news for your middle son!! Isn't it wonderful that his profs have recognized his potential? Love his school!!

 

Creekland, I'll continue to pray daily for your good health. You are just as amazing as your kiddo in dealing with all of this, really. Glad you have a job that you like to keep your days filled.

We all still love his school too - especially him, but just as much here.

 

And if I had a choice about dealing with this or not having to I'd wimp out in a heartbeat... but it just isn't optional... so one deals with the new reality and keeps plugging along (perhaps noticing the beautiful color of the fall trees a little more).

 

How wonderful about your ds.  You will be able to chime in even more when folks are fearful of homeschooling high school.

 

And how scary to enter this new arena of healthcare.  Blessings as you navigate.  BTDT.  Saw many one-in-a-million great results.  That can be you.

 

Julie

I was just mentioning to hubby this morning that I'm so glad we took the jump to homeschool.  Middle son would have been at or near the top of his class in our ps too, but he just wouldn't have had the depth he was able to get at home due to our school not offering it.  I'm positive that depth has helped him in college.  He still works/studies to be where he is, but his foundation is there to go along with his terrific work ethic.

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bugs

bugs

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The news about your son is thrilling! I think I'd be trying to bring it up in all sorts of conversations if it were me ...you know, "Those covalent bonds are fairly attractive, but not as much as the scholarship nomination my son has received."   :tongue_smilie:

 

I'll pray your tumors are manageable without surgery. 

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JennW in SoCal

JennW in SoCal

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Wonderful news about your ds, Creekland.  He really found the perfect college fit -- a place where he can grow and learn with faculty who want the best for him.  

 

And yes, you deserve some good news!  I just learned of your tumor a few days ago and sat dumbfounded with the news for quite sometime. Good vibes, many prayers and loving thoughts will continue your way, for you in coping with it all, and for your family who loves you. 

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garddwr

garddwr

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Congratulations to your son!

 

A friend of mine recently had surgery for a brain tumor, and ended up with some serious complications; things were touch and go for several weeks actually, but she is on her way to a full recovery now. I understand being somewhat relieved to not be facing surgery at this point, and will pray that you get the very best of medical advice and treatment.

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creekland

creekland

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A friend of mine recently had surgery for a brain tumor, and ended up with some serious complications; things were touch and go for several weeks actually, but she is on her way to a full recovery now. I understand being somewhat relieved to not be facing surgery at this point, and will pray that you get the very best of medical advice and treatment.

I hope your friend continues her full recovery...

 

It's kind of scary to think of just how many out there deal with this sort of thing.

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creekland

creekland

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I also have interviewed quite a few brain surgeons.

 

Interviewed them for???

 

I'm totally new to all of this.

 

Middle son sent us an e-mail earlier this afternoon telling me surgery would have been better than radiation, but I've yet to contact him to ask why.  He's also only had a few brain classes so far - no "real" knowledge (not even med school yet) unless gleaning from some he might come across at school via work or classes.  It does have me curious though.

 

To go along with my beaming pride in him... he also pulled off another A on a test in his Orgo class beating the curve by a bit.  He's far surpassed me in academic intelligence and many other things.  I love watching him fly though I do miss him here in the nest.

 

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Barbara H

Barbara H

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Thanks for posting the update. It is wonderful that your son has been nominated for the prestigious award. Whether he gets it or not, that kind of thing is a great stepping stone to building relationships with faculty and to getting support on campus. Hooray!.

 

I'm sorry you need to go through radiation. I hope the process is not too difficult.  At least now you have information - I'm guessing some of those symptoms are really difficult to live with but at least easier when you know what is happening. Sending good thoughts your way.

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creekland

creekland

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I'm guessing some of those symptoms are really difficult to live with but at least easier when you know what is happening. Sending good thoughts your way.

 

The vision stuff I've actually adapted to over the past year and a half.  It mostly comes naturally, so isn't an issue.  It'd be tough if I couldn't see normally at all, but I can to the right, so it works.  Even when I have to look to the left (seeing double) it doesn't cause headaches or anything like that.  It's just weird, but I'm used to it now.

 

The pressure and stuff merely reminds me to stay active - not such a bad thing.  It's the newest one I'm adjusting to, but not difficult.

 

The constant ringing in my ear is the most annoying one, but if that's the worst it gets, such is life.  There are many who deal with far, far worse.

 

So... if they can just stop growth, all should be well, or at least I'd like to believe that.  ;)

 

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Lanny

Lanny

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Congrats to your Middle Son!

 

With regard to your brain tumour. Where we lived before (for 8 or 9 years) our next door neighbor was a Neurosurgeon. Once, we brought to him data about a girl who lives several hours from Cali. He took that information to the Neurosurgey Board, in the very large hospital where he is on staff. The consensus of opinion was, as in your case, that the risks of surgery were too great and that she should not have surgery.

 

If you go the Radiation route, I wish you much good luck and I hope the results will be great.

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creekland

creekland

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With regard to your brain tumour. Where we lived before (for 8 or 9 years) our next door neighbor was a Neurosurgeon. Once, we brought to him data about a girl who lives several hours from Cali. He took that information to the Neurosurgey Board, in the very large hospital where he is on staff. The consensus of opinion was, as in your case, that the risks of surgery were too great and that she should not have surgery.

 

Thanks for sharing this... it sounds pretty similar... so it's nice to know it can be "common."

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Lanny

Lanny

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Thanks for sharing this... it sounds pretty similar... so it's nice to know it can be "common."

 

You are welcome. I'm certain that it is extremely common. Ethical surgeons love to do surgery, that is what they train to do, but they also want to keep patients out of the operating room. I remember what happened, fairly well. We received the information they had about the girl  and her problem, and when our neighbor was available, I went over to their house and he was shooting pool with another M.D.  Our neighbor took a look at the data we had received and discussed it with his friend. Then, to my surprise, he told me that he was going to present the case to the Neurosurgery Board in the hospital where he worked. When I thought about that, it was wonderful for the patient, to have her case presented to a group of Neurosurgeons and get varying opinions. I believe the consensus of opinion was that considering the symptoms the girl had at that time, the risks of surgery were simply too great and that it was  better for her not to have surgery.

 

Another factor might have been a lack of experience or equipment here, with that particular problem. So, as with all things medical, there might have been a hospital somewhere else in Colombia, or somewhere in the USA, where surgery would have been less risky for her.

 

ALL surgeries have risks. In November 1997, I had LASIK surgeries. The surgeon who did the procedure was at that time #2 in the world for LASIK surgery. A pioneering scientist and a perfectionist.  She told my wife and me, "I'm dealing with healthy patients, so it is incredibly important they understand the risks".  In my case, the results were spectacular. However, when I went back, 1 or 2 days after each surgery, for checkup,  some of her other patients were having major problems.

 

In your case, you are not a "healthy" patient, but the risks of  the possible surgery must be considered to be major.

 

I know, that there are cases, many cases, where Neurgosurgeons can perform miracles, but they are humans, they are not God, and if the one(s) you have consulted suggest not having surgery, I would go with their recommendation, if I were in your shoes.

 

I will include in my prayers that the Radiation therapy is very successful. GL

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creekland

creekland

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I know, that there are cases, many cases, where Neurgosurgeons can perform miracles, but they are humans, they are not God, and if the one(s) you have consulted suggest not having surgery, I would go with their recommendation, if I were in your shoes.

 

 

 

In general, when I don't feel I know something well (or at all in this case) my default is to go with the experts who deal with it on a daily basis.  I was, however, going to waver just a bit if they suggested surgery as it just doesn't seem to be a good idea (to me) considering everything... hence why I considered it to be good news when I found out they think the same way. I've been truly rejoicing at that.

 

If I had wavered, I'm honestly not sure which way I would have gone.  Now I don't have to worry about making that decision.  Should radiation not work and they change their mind in the future, I'll know we at least tried.  I have absolutely no idea what the odds are.  Google hasn't been much help either.  I have found a site that said roughly 70K people are told they have some sort of brain tumor each year (all types of tumors).  Woo hoo... I won (sigh).  But it could have been worse... so I remain thankful and will just chart the course that needs to be taken as we find out about it.

 

The harder part for me (right now) is dealing with the "healthy" part.  Of all of my close and extended family + many of my friends I not only had a healthier diet/lifestyle (for years), I also don't even do many of the "gray" risky things like talking on cell phones nearly as much.  It's not even a close race.

 

So... I went to McDonald's for lunch... with no regrets.

 

It's probably not something I plan to do on a regular basis and I certainly don't feel like starting to smoke (anything), but the connection between healthy living and things like this is a little blurred to me right now... and I'll admit it's annoying.  I would NEVER wish this on anyone (except for one person who appears to be jealous (HOW does that happen???)), but...

 

Eh - I'll end here.  'Tis better that way I'm sure.  ;)

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*LC

*LC

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Another factor might have been a lack of experience or equipment here, with that particular problem. So, as with all things medical, there might have been a hospital somewhere else in Colombia, or somewhere in the USA, where surgery would have been less risky for her.

...

I know, that there are cases, many cases, where Neurgosurgeons can perform miracles, but they are humans, they are not God, and if the one(s) you have consulted suggest not having surgery, I would go with their recommendation, if I were in your shoes....

 

I don't mean to derail your thread, but I must comment on this quote. The first part is absolutely true; there is a big difference between neurosurgeons, so what is impossible for one is routine for another. Since that is true, I cannot agree with the second part of the quote. If one is told a brain tumor is inoperable, then one needs to seek out a brain tumor specialist. Of course, there are tumors that are inoperable by location, but many that are diagnosed as "inoperable" are operable by a brain tumor specialist.

 

I have been a member of a BT support group for more than a decade, and I cannot count how many stories I have heard from people with "inoperable tumors" who had a completely successful surgery with another neurosurgeon. Unfortunately, for some types of brain tumors surgery is an important step even with the risks. There are other brain tumors that allow different kinds of treatment without reducing survival odds.

 

Creekland, congrats on your son's first step toward later scholarships. And, prayers for you.

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Catherine

Catherine

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Creekland,

 

I haven't been on the boards much so I missed this the first time around. First, congrats to your son!!! That is huge! And you are right-even if he isn't awarded a fellowship, the bigger issue is the recognition and support from his own professors, who know him well. You have much to be proud of-so brag on!

 

Second, I am so sorry to hear about the results of the testing. It is good that it is approachable with radiation, though. Longer treatment, but less recovery. Don't worry too much about what your son told you-there are particulars of every case that make all the difference in outcome, risk, long term prognosis.

 

What you say about healthy habits is something I think about a lot. We are not in control of the outcomes ourselves, only our choices. And it is so discouraging and disappointing when our choices do not eliminate all potential bad outcomes. I'm not sure what to say to that except to point out that you will manage the radiation better as a healthy person, and your sense of well-being will be higher. ((hugs)) to you and your family. And please know the offer still stands.

 

Catherine

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Starr

Starr

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Congratulations to your son! Be proud mama, be proud!!

 

I have a different kind of benign tumor near my brain. It is fairly rare and I had to do a lot of research myself in the midst of hysteria. We live in a small community and the doctors were not aware of the choices of treatment. I'm quite amazed at the different choices of radiation and how well they work. Look into the Cyber Knife(its a radiation machine, treatment) through a University Hospital. It might be a good option for you as it is only a few back to back treatments and you are done. Not the everyday thing for a month or so. They say it's particularly good for brain tumors. Pm me if you want to chat. I went the Boston route but am just watching for now.

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creekland

creekland

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I'm not staying local with this either.  I didn't even start local considering all the web sites I consulted with my vision symptoms ended with "see a doctor."  Local is wonderful for routine things with nearly no wait and being able to be treated like a person rather than a number, but the local guys just don't see all that much when something isn't routine.

 

That said, at the moment, I have no clue what is going on... so am in a waiting mode and soon to head out to the grocery store followed by (maybe) cleaning the barn/adding fertilizer to our garden.  Every now and then I like to pretend life is semi-normal again.

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creekland

creekland

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That said, at the moment, I have no clue what is going on... so am in a waiting mode

 

I probably should clarify this just a little... The "no clue" & "waiting" are due to a new complication that has set in that (for me) is totally unexpected.  It's not really a good thing (physically), but I've no idea how "bad" it is until ??? (the waiting part - no easy solution to this - weekend, holiday, etc).  Meanwhile, I've discovered a new love for gum - it relieves the symptoms well.  Otherwise, I was kind of going insane the past couple of days.  With no symptoms constantly there I can wait a while and be ok.  The "maybe" with cleaning the barn will depend upon if the gum is going to become "barn flavored."  The barn needs cleaning, but I do have my limits... I prefer my fertilizer after it's had the chance to be weathered over a winter and modified by the plants.  ;)

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creekland

creekland

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Yep, sometimes it just doesn't seem fair.  On September 11, 2002 ( Easy to remember the date because I was singing at a 911 one year service) I got home and my husband sat me down and said I have some bad news.  I thought...my dad died because he smoked and was in horrible shape or my grandmother died or something like that.  My stepdad who was a runner and in great physical shape and skinny had a stroke!  ( Well, or was it an aneurism??)  It is a special kind that runners get!!!!  If I had listed people in my family that would have a major medical issue, he would have been last on the list.  So yep, I get what you are saying!!!!

I won't say I've been "perfect" on the healthy issue by any stretch of the imagination.  Putting Americans on a scale from 1 - 10 with 10 being "ultra healthy" (as per the professionals), I'd probably put down a 7 - maybe 8, esp if you go back a few years when we were out exercising more than the walking we do now.  It's just that the rest of my family would rank in there around 2 or 3... the smokers might even come in at a 1 as I don't recall anything about their diet giving them checks in the plus column.  The smokers are extended family (aunts + uncles) - I didn't grow up with secondhand smoke on a regular basis.

 

I guess it just goes to show... one never knows.

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