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forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi All

First, thank you for your expressions of support in my last very long post.

I talked with my reg doc this afternoon. This is what I now know and what will happen next.

The scan showed a large pocket of fluid in the area of the most pain. It may or may not be infection brewing. My white count is not to low, just somewhat.

The doc explained that during the surgery the onc had to rip apart numerous adhesions. From many previous surgeries. So, that by it's self can cause a ton of extra pain. The area is super raw and inflamed. Okay. Why didn't anyone care to share this with me before???

My doc is concerned about my other blood levels. Very low iron, due to blood loss from surgery and still very dehydrated. Not a great combination.
He wants to make sure that I try to maintain my nutritional intake and that I keep the pain under really good management. Both seem almost impossible to do. I suppose the pain control will be some easier to handle. But trying to eat is not so easy. I have been trying to have very small amounts of jello, yogurt, toast etc. throughout the day. So far this seems to help a little. Plus I have now doubled the dose of the dilaudid pain med. This also helps a little. So maybe all these baby steps are moving me in the right direction.

He also had a talk with the elusive onc!. She wants to see me next week to make sure that the pocket of fluid has not become an infection. She told him to tell me to call and set up an appointment. Why the hell couldn't she call me or her nurse call me. What a bunch of baloney!

He expects that this pain may be around for at least another month or so. I told him that I can hardly do this now, how am I going to keep going for weeks. One day at a time and his support and help with the cancer center might make it doable. That was his thoughts on getting through this.

I am really not sure that food alone can bring up my levels, so he did mention that I can get additional i.v. fluids and transfusions if really needed. The fluids only help in the short term, I know, but maybe it's just the little extra that I need. Same for the transfusions. Although they can create additional problems, so for now I'll try to eat a bit better, rest a lot more and take as much pain meds as needed to bring me to a painfree state.

So that is where I am heading into the weekend. Hopefully all will work out. My doc did say to NOT let the cancer center get to me, he said we will deal with that nonsense later. Lets focus just on you and your comfort and needs.
So that is what I plan to do. Day by day, hour by hour.

Thank you all for sticking by me, this has been beyond crazy time. Thank you thank you.

Super (((hugs))) to each one of you. You all so deserve so much more.

Lisha

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Wow. My eyes are tearing up for you. Oh honey I wish I could help you. Hang in there sweetie.

forme's picture
forme
Posts: 1161
Joined: Aug 2010

I was just about to go lie down for a bit. Hubby is watching the ball game. But I saw your post and have been meaning to write you for a long while. I still plan on doing that too..

Anyway, I am trying my best to stay the course and find some strength to get through this crazy time. I'm sure you know how hard that can be..
I hope you are hanging in there. I think I read somewhere that you had a "feeling" the rituxin was not really helping. Gosh I hope that is not the case. please keep me updated.
I tend to be a believer in "feelings". Some folks just know there bodies so well. You and I are some of those folks.

How are you holding up with working and the hot weather? I cannot imagine either.
Well, I think I should rest for a bit. I'll send you an email later when my brain is more awake.

(((hugs)))
Lisha

vinny59's picture
vinny59
Posts: 1031
Joined: Nov 2006

Hey Lisha, I'm trying to send you some positive vibes from Jersey! Guess it's just taking a little more time to get there. You have been through a lot, just know that it can only get better... stay strong like I know you are! Vinny

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi Vinny

Thanks for the positive vibes. I can feel them all the way out here.
I have been trying my best, but it is so hard. Yesterday, all I did was sleep. Which of course does not help with the eating and drinking part. But I am trying.

How are you doing? Seems like I have been so focused on myself lately that I have not asked about you. I sure hope that you are staying strong and enjoying the summer. How is your garden growing. I have not touched my garden in months, thankfully hubby has taken to gardening. Nothing new planted, but he is keeping it nice and tidy.

Also, how is your Dad? I remember that he was having some struggles with his cancer. I hope he is able to avoid tx and just continue the watch and wait. So much easier, in the bigger picture...

Thanks again for always being so positive. There are days that I find it oh so hard to do. reading posts from you and the others really helps to snap me back into a better mindset.

Huge hugs
Lisha

jimwins's picture
jimwins
Posts: 2101
Joined: Aug 2011

Hi Lisha,

I'm glad you got some information and it sounds like your regular doctor
is standing by your side as it should be. I'm sorry the oncologist/team
is not as seemingly devoted.

The IV fluids and transfusions might be a good idea to get you over the hump.
You might consider Ensure or similar. In the beginning my oncologist told
me Carnation Instant Breakfast was a less expensive alternative. My poor sister
went out and bought about a case of that stuff - I never needed it as I was
able to eat like a pig most of the time (prednisone).

If appetite is a problem, you might ask for marinol - it supposedly works well
to help appetite. I don't recommend baloney, you've had too much of that already!
However, fried balogna sandwiches are very popular here in the south. They are
actually served in restaurants :) - well most of these restaurants wouldn't
serve wine with their meals ;).

Hanging in there with you,

Jim

miss maggie
Posts: 929
Joined: Mar 2010

Dear Lisha,

I was going to mention in one of my post's about prior scars from other surgeries.
It does make sense, considering the surgeons would have to re-open these scars to
get to the tumor. The fluid is another problem. Especially if there is a chance
of infection. Isn't there a blood test to test for infections?

I agree with Jim about Marinol. This was given to my husband when he lost his appetite.
I don't think any doctor can call in this prescription, Keith would have to pick up
prescription from doctor, then get it filled. My husband had Pancreatic Cancer.

I agree, the oncologist should of called you directly. The Nerve of her. Calm down, it
is what it is. You need her right now. When you see her, explain your feelings in a
very nice way. You would appreciate it very much her calling you directly, not going
through your doctor.

The news you received might be good news. There must of been so many thoughts going
through you mind. The only thing that worries me, is you getting an infection.This
is not what you need right now.

Praying really, really hard for you. Love and hugs Maggie

allmost60's picture
allmost60
Posts: 3183
Joined: Jul 2010

Hi Lisha,
I think your right about the "baby steps" and also keeping the pain meds on track... keeping ahead of the pain. Try to eat as many "mini meals" as possible throughout the day...just enough to keep your strength up, but not to much as to upset your stomach or cause pain. I so wish things will start to look brighter for you...but alas, time is probably the key, and it passes so slowly when we are hurting. Thank you so much for keeping us up-dated...I get on my laptop every day at some time, just to see how you, Aaron, Donna, Liz and others are doing. I can't seem to send private e-mail from the cottage..(happened before),so I'll have to post private e-mail from the CSN site instead. UGH! Miss getting jokes and comments from John. Well sweetie...you hang in there and you know of course my positive thoughts and prayers are with you. Much love...Sue
(FNHL-2-3a-6/10)

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

God bless you!

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