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And so i wait again

Posts: 20
Joined: May 2012

Well I made it thru the second craniotomy with tumor disection in 4 months. I am home now, my head hurts, i am tired and weak. The follow up MRI was "inconclusive" and I am waiting for pathology reports. There is still some hope that the problems I experienced were from post craniotomy changes. But since doctors like to assume the worst and work up from there we are planning our next attack..whole brain radiation. Anyone been thru this..input?

The rest of me still looks good. Doctors are still optimistic I can achieve "disease free survival" I am hoping that this is cancer's third time at bat and I have struck it out. It keeps getting harder to get back up.

I should be preparing Thanksgiving dinner for my family not lying bed, and with Christmas right around the corner i just don't know how I am going to do it. My kids are still so young..this should be the best time of the year for them. I hate this..I hate being sick, i hate being helpless. I wish it would just go away and never come back.

I am sorry..I guess I am having a down day..too much time to lay around and think about things but when i try to get moving i get dizzy and tired and need to lye down again.

I see the docs on the 28th--let's hope for good answers

Hope you all have a Happy Thanksgiving


salls41's picture
Posts: 340
Joined: Apr 2012

I am sorry you are having to deal with so much right now. I know it must be hard to just lay there and get strong but that is the very best gift you can give your babies! Stay down until you can get up and get going!!

Alexis F's picture
Alexis F
Posts: 3602
Joined: May 2009

Praying you get good results. Take care of yourself, that is what is most important now.

Hugs, Lex

lynn1950's picture
Posts: 2574
Joined: Jun 2008

We have all had those down days. I am sure your family wants you healthy more than a holiday. It sounds like your surgery was successful. Wishing you NED. xoxoxo Lynn

MsGebby's picture
Posts: 659
Joined: Oct 2011

Truly .... you have gone through so much. My prayers for you and your family that the pathology report is nothing but good news.

God Bless


Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Yep, those down days are a part of dealing with this stupid disease. Remember, it is ok in this situation to use drugs to help when you have too many down days. Be sure and ask your doc. I really hope you are feeling better now, both physically and emotionally.

I had whole brain rads, 15 days, 37.5 greys, for scattered spots of cancer. During treatments, fatigue was the biggest issue. I didn't even have skin issues during treatments. I used calendula gel. I had to use it from my eyebrows all the way to the lower part of the nape of my neck, including my ears and about an inch in front of my ears.

About two weeks after WBR was done, I started having skin issues (redness, itchy) at the nape of my neck and in between my crown and forehead. Then I developed a double ear infection (I still have some trouble with my ears plugging up). And right after that I had shingles. I don't know for sure that shingles was related to the rads, but the docs are quite sure the ear issues are a result from the rads.

So overall, my advice is to protect your immune system for about 6 weeks after rads. And use the calendula gel (no alcohol).

BTW, my last MRI showed no cancer in my brain. My onc said it looked so good, we won't do another one for 6 months.

Please keep coming back as you feel up to it. We want to know how you are doing.



DebbyM's picture
Posts: 3293
Joined: Oct 2009

Sending prayers!

VickiSam's picture
Posts: 9080
Joined: Aug 2009

thoughts your way.

Please know that we are here for you, 24 hours a day, 7 days a week.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Angie2U's picture
Posts: 2992
Joined: Sep 2009

Any results yet? Lots of prayers!

Posts: 20
Joined: May 2012

No results yet, I see the doc on Wed-9:00 am. Still hoping for the best, Please keep the prayers coming. I am not sure how some of the lingo works here yet--is this when i ask for the PINK bus??

Posts: 20
Joined: May 2012

I am still hoping the pathology will come back NED and all the problems were from necrosis and post craniotomy changes, How long ago did you have the WBR? the good news no matter what I am still just dealing with one spot, the rest of the brain and body looks good. Did you have to take Keppra or Steroids? The side effects from those are AWFUL!!! and they don't help with my moods either. I had to chuckle when you told me to protect my immune system---I have 5 kids, that will not be easy.

Well I will keep you posted, thank you for input


New Flower
Posts: 4299
Joined: Aug 2009

I am very sorry and wish you NED.
Please focus on yourself and ask for additional help from family and friends. You need rest and recovery time, instead of pushing yourself to keep up with everything that you used to do.

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