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Update

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi All

Well, I have spent a good deal of time trying to come up with the best way to describe what's going on with me. Hopefully I will make some sense and not ramble on to much. So here is my update that I have been promising you.

As most of you know, I spent time this past summer getting rad tx in Houston. Not fun and way to far from home. The recovery was slow but doable. I have been feeling pretty good lately. I think a bit of denial has helped with that too.
Well my most recent scan showed a new somewhat small 7 x 9 mm at the beginning of my esophagus. This new one is higher up than the last one. My options this time are more daunting.
I was told that I should have IMRT to the area and since it is a different location it is allowed. Seems very close to me and it has only been a short while since last time. I was also told that because of the recent tx the side effects will be NOTICED much more. That is how the doc phrased it to me. What a joke! Haha, I am not laughing. Noticed. Really!
Chemo was again mentioned, but it was stated that it really won't help much. Hmmm then why offer it at all.. So the consensus of the docs is to go to Houston and do this again. Or stay home with new docs and do this again. Or do nothing for now and wait and see how fast and or big it gets. My vote first and formost is to stay home. There is no way I want to do this again in another state. Plus it is way to much money to spend. Plus I have to be here for my elderly mom. She just turned 90 yesterday and is frail and old. So Texas is out in my opinion. There is just no way I can go back there. I need my home and my family more than anything.
So now do I get tx here, very soon or do I wait awhile longer. I really don't have a clue what to do. I am scared of the side effects and scared of waiting to long. Plus the local docs just make me feel a bit uneasy. I am sure they are great, but..
It feels really easy to just wait till after the holidays to even think about it. And of course there is always the money part of having cancer. But I will save that for another post and another day...
I think I am starting to ramble on a bit. I'm sorry if this makes no sense. You all have given me such great advice and it has helped me through some tough times. Hopefully you can offer up some wisdom that I seem to have lost.
I feel good, so why choose to feel bad, really bad. I just don't know if I can keep doing this.
My counts are okay, wbc and platelets are low but not horrible. Most others are low normal. This is good for me, but I worry what more radiation will do to my marrow. It is already altered.
So this is my dilemma. I haven't really shared this with anyone till now. It feels to real if I talk about it to much.
Thanks for always being so supportive. I hope this wasn't to long of a post.

Thinking of all of you...

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Lisha,
Why not just see what the drs. where you are can offer. I know people travel all over to the best hospitals or at least thats what they tell us. I am sure the better the name the higher the price tag that goes with it. I don't go to the best name ,but they have really done a lot for me. I think sometimes the big hospitals are a place where a lot of experiments go on. We only hear of the success stories.I am not putting them down because thats where a lot of the progress has come from. It doesn't take long and all that success makes its way to the other treatment centers. Maybe waiting till after the holidays may be the best way to go right now. You can go back to the local treatment center and find out if everything is the same or things have changed. Then you can go from there. Its only a suggestion. No matter what you decide we are always there with you. I know how hard it must be to make these decisions. I am sure those thoughts go thru all our minds. I know they do mine. John

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Lisha,
(Just teasing on the "windy").

I agree with John. If it's not threatening for you to wait (at least until
after the holidays) and you're feeling pretty good, why not give yourself a break?

I haven't been through nearly as much as you and many others but I can't
imagine having to go through treatments again anytime soon. I got through
it and have been truly fortunate so far but there is that fear we
all have to deal with.

I was flipping through the cable channels earlier today and decided to
watch "Letters to God" and boy, I "boohooed" there for awhile. I think it's
the first time I've had that kind of cry since all this started. I do tend to
have delayed reactions to things. I can't exactly blame it on prednisone now.
Maybe I'll pick "The Three Stooges" next time ;).

Anyway, I didn't mean to get side tracked. You know we're here and will
support whatever you decide. Hang in there.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.
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vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hi Lisha, good to hear from you, I'm leaning towards John and stay close to home. Feeling good for a change is great. Why jump back into the fire if you don't have too..... I feel your pain with this, I still can't get it out of my head that there is still activity in my hip bone area. Our brains really work in over drive, thinking of all the scenarios that could happen, it's a real mess! If I was you, enjoy this coming month the best you can, then get it checked for any changes............ Keep the positive thoughts going Vinny

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lisha,
A couple of things you said...." I feel good, so why choose to feel bad, really bad"...and...."My counts are okay, wbc and platelets are low but not horrible, and most others are low normal...this is good for me"... all of this tends to makes me feel no harm would come from waiting until after the holidays. I understand how you feel about waiting and the worrying that comes with it. If I wait am I going to get worse? If I go forward with more treatment can I handle it..again? It's enough to make a person dizzy, and as we both know...Libras hate to leave things up in the air. I am constantly thinking about the one spot under my colar bone that didn't show improvement after finishing chemo...is it worse?...is it spreading?, etc,etc. I feel like waiting a year for a scan to check it out is too long, but my Onc thinks differently, so I am trusting he knows whats best. With that being said though...the scary thoughts still linger in the back of my mind, but as long as I can go about my daily chores..watching Lizzy...housework, etc, I'll just keep thinking positive thoughts and not dwell on the "what if's". You are always in my thoughts and prayers Lisha and I think about you all of the time. Let us know what you decide to do and as always, we will continue to support you completely. Take care sweetie and keep us posted. Much love...Sue
(FNHL-2-3A-6/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi John, Jim, Vinny and Sue

Thanks for the loving support. I gain so much from you guys, so so much.

It really does help to read your responses. It is hard to get a true response from a Dr. And family, well forget it...

Your advice is valid and gives me strength. I am thinking that I should at least get the requested endoscopy/endoscopic ultrasound. Had one awhile ago, but not since the scans. Dr wants me to get it asap. But as you may know by now, I hate to do anything asap. I need my time to process and research. I'll let you know, if and when.

I always worry about dumping to much on you guys, and you always reassure me that it's not to much. Thank you for always being the voices of reason. I seem to need a lot of that these days.

(((Hugs))) to each and every one of you. You are the greatest group of friends.

I'll post more later. Have to get ready to go to my grandsons 15th birthday dinner. I still cannot believe that I have a 15 year old grandson!
He is the best kid, he tells me that I am not old at all, and that many of his friends PARENTS are older than me. Gotta love that kind of truth. It always makes me feel so good and not old at all.

Lisha

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Have fun at the Birthday dinner!

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Not me ♥. Maybe I'm becoming more "historical" or is that "hysterical"
these days? A couple years back I made a joke/reference to "Jimmy Hoffa"
and none of the guys (fairly young)I worked with knew who I was talking about.
Of course they were all computer geeks who had their electronic umbilical
cords attached to their texting devices :).

Let's see, I have 3 nieces and one nephew and from them there
are now 11 grand nieces/nephews - that's a lot to keep up with.
One niece has 6 children and she has recently gone back to college.
I don't know how she does it. I can't imagine having to buy groceries
for 8 people - much less having to cook and everything. I'd be worn
out - so maybe I am getting old... ;).

The picture I'm using now for the holidays is of me and the three children
of one of my nieces who lives fairly close. I'm the "silly" uncle :).

Hope you enjoy the birthday dinner.

Hugs,

Jim

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forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Jim

Well, between my husband and myself there are 13 nieces and nephews and from them there are 14 grand nieces and nephews with 1 more grand niece due to be born soon. It could be that there are even a few more that we don't know about. A couple of the nephews we don't have any contact with.
So, I guess I have you beat in the numbers game.

The birthday dinner was great. Sushi, salad, rice and Japanese curry and miso soup. I only had the salad and a few pieces of sushi.

I made brownies for the "cake". My grandson only wanted pumpkin ice cream, so I thought brownies would go great. Anyway, it was nice and he got some great gifts.
I'll have to look for a recent picture of the grandkids so I can brag too!

Lisha

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Yep, you're right about age being a number ☺.
Would love to see pics of the grandkids too.

Glad you had a good time.

Jim

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Lisha,
Just wanted you to know I read your post and that I am thinking of you and the decisions you and your Dr. need to make. I agree that you should make decisions after the holidays. I pray that you find a Dr you trust totally at home as I think being away adds to stress that is already there. You are the best and I pray that this year will bring you good health. From your picture I thought you were 40. Looking good girl:)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Happy Holidays Joanie

Thanks for the kind words. It has been hard to not think about the upcoming future, but I am trying.
I agree about staying close to home. It is just to to hard to be so far away.

Have a wonderful Christmas. Keep smiling, your picture is great.
Lisha

PS I wish I was 40, thanks. I still feel like I am a young grandma, just turned 57 this past Oct.

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