Author Topic: How have you made life plans while in watch and wait?  (Read 162 times)

Sharky

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How have you made life plans while in watch and wait?
« on: June 12, 2019, 11:25:32 pm »
Hi everyone,

I'm feeling calmer since my diagnosis of a small AN about three weeks ago.

I had been just about to start a demanding online degree part-time, while working full-time, when I got this diagnosis. I elected not to begin, because I don't want to be halfway through a school year, only to have to stop for treatment and recovery. Also, I don't think I'm in any place to really focus on school right now, when I have to much else to think about, research, and *make decisions* about, maybe as soon as November. I feel mostly ok right now, very mild symptoms, but I'm trying to think about my future and the only way I can do that is to simultaneously think about the worst outcome while telling myself I'll be fine and the tumor probably won't grow. It's a weird head game. I had all of these plans to go forward to enhance and better my life. They were well thought out over a long time and now this.

I don't know how to express this cognitive dissonance, as I keep calling it.  I really COULD be fine in a few months. No growth. No increase in symptoms. I feel like many choices have been taken from me, and instead I must go the most secure way--the way of the best benefits on the job--and that will define my future. I actually was not going to go that way...

What issues/challenges have you had making life decisions while in watch and wait, or did you just not make any for a time?
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

kestes

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Re: How have you made life plans while in watch and wait?
« Reply #1 on: June 13, 2019, 08:02:42 am »
My mantra was and still is Watch & Live and I did just that by partially climbing one of the largest peaks in Colorado, Longs Peak, got to about 13,500 feet but weather dictated how far we could go and we turned around.  I also did many miles hiking in the Smokey Mountains and camped at a third national park called the Dry Tortugas in Key West.  NOW, at the end of my watch & live for 6 months my AN did show growth and I had GK 6 months ago.  5 weeks after GK flew on a plane to Utah and hiked 25 miles in Southern Utah, to Scouts Lookout of Angels Landing, The Wave and Figure 8 loop in Bryce Canyon.  Went to Cancun in February and climbed to the top of Coba ruins - holding onto my husband and stopping when I got dizzy.   I am 6 months out of GK so am experiencing some swelling and dizziness/vertigo so I have slowed down, but I plan to hike to Mt. Elbert in Colorado in September if I am feeling good enough.  Nothing has stopped me, I have just slowed down and more cautious.  I have 24 hr tinnitus, some hearing loss, fatigue and dizziness.  I will have to have mris every 6 months for a while to still monitor the tumor.   Best wishes to you on this journey!!!
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

Sharky

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Re: How have you made life plans while in watch and wait?
« Reply #2 on: June 13, 2019, 01:11:19 pm »
Hi kestes!!

Wow. I was looking for some inspiration and you offered it in spades.♥

Your reply is so heartening. I, too, want to Watch and Live. It just doesn't make sense for me to start a program that I might have to drop out of. I was also on the cusp of beginning a whole new career and now I am uncertain about that as well. I do like your attitude, though.

May I ask how old you are? I'm going to assume that you went into this whole AN thing in good health and likely pretty fit?

Are you retired or working?

Thanks so much for your reply. :-)
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

ANSydney

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Re: How have you made life plans while in watch and wait?
« Reply #3 on: June 13, 2019, 05:32:55 pm »
I like it, we should rename "Watch and Wait" to "Watch and Live". I'm on Wait and Live and so far have changed nothing in my life. It's progressing unperturbed.

Sharky

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Re: How have you made life plans while in watch and wait?
« Reply #4 on: June 13, 2019, 09:43:18 pm »
Hi ANSyney :-) I've enjoyed reading so many of your posts.

I am completely down with the notion of living each day instead of waiting for the axe to fall. I have decided to carry through with whatever plans I have that will not waste my time or money if I need to regroup in six months in order to have treatment. I have a few other very positive goals to work on right now and I'm thankful to have these things to focus on. Everything else is going on the back burner at least until I see what's going on at my follow-up. I have a feeling that, if I show no tumor growth and no increase in symptoms by then,I will go forward with everything else.

This diagnosis came at such a weird time and really upset my applecart for a bit...I just don't want to continue to feel upside down so I'm not.

I think the added complications of the ENT also being concerned about NF2 and then my primary doc thinking I have a pituitary tumor has thrown me. It was just a huge "What?!" followed by another "What??!" followed by a "What?!" with all of this at once.

I have some skepticism, I guess, about how much of this I really need to carry right now. My neuro opthalmologist did not see a pit tumor on the orbits MRI, where the AN was seen. The radiologist who read my MRI does not see it, either, but the pituitary protocol was not followed, so there IS a chance that there's a tumor. I naturally feel concerned and am somewhat resentful about that because I'm not sure I need to be. And as far as the NF2 goes...I'm 55. I'm in watch and wait. I don't see why I must run get genetic testing and worry about NF2 on top of everything else. It's just too much. So, I am going to pull away a little from the myriad referrals I've gotten for this,that,and the other thing, and just live. Live in the present. I was suddenly hit with so much. I'm not ready to be this much of a patient...instead of going on and being the person I was going to be. Who knows how things will shake down for me in the end. I want to enjoy feeling as good as I do for as long as I can.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

ANSydney

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Re: How have you made life plans while in watch and wait?
« Reply #5 on: June 13, 2019, 11:19:49 pm »
Sharky,

I'm glad you liked reading my posts. When I first got diagnosed I was like a deer in headlight. I read so many papers and got a good handle on this disease. No matter what course you take, it's a gamble.

My tumor has not grown since diagnosis in August 2016. According to the studies, it's unlikely to grow at this stage (fingers crossed).

The clear majority of tumor have already stopped growing by the time they are diagnosed and some even shrink.

Cheers,
ANSydney

Sharky

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Re: How have you made life plans while in watch and wait?
« Reply #6 on: June 14, 2019, 02:00:13 pm »
Thank you, ANSydney.

I'm very happy for you that you've had no tumor growth!
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

Sharky

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Re: How have you made life plans while in watch and wait?
« Reply #7 on: June 15, 2019, 04:45:23 pm »
The thing is...even though my tumor is small, I did not have symptoms when it was whatever smaller size it was, and now I do have some symptoms--because it grew, I'm assuming. I see no reason to believe that this is the end of the growth. I'm assuming that my tumor WILL grow. I only hope that it grows very very slowly, and that I have as much time as possible (preferably years, not months) to just live my life, without having to gamble on treatment. In fact, although the doctor I saw originally designated my watch and wait period to be 6 months, I may just push that out to one year, if I don't see an increase in symptoms.

I've appreciated every single reply and post I've read here. This is a wonderful resource. I am going to step away from all of the doctors and second opinions and NF2 questions (I seriously doubt that I'm NF2) and just do life, like I was doing it before the tumor was incidentally found. I am stepping away from the forum, too, for a while.

Best wishes to you all! Thank you for everything! I'll see you on the flip side. :-)
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

 


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