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Recovering from brain surgery

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Well, so much happened in a short amount of time that I don't really know where to start.

David has been struggling with excruciating headaches for a while now. Since July, I guess. After several different types of MRIs and several trips to the ER, his NO scheduled another craniotomy for Tues. 9/27. On Monday he was rushed to the ER with another horrible headache and this time the CAT showed that his tumor was bleeding slightly from several tiny prickpoint spots. His NO went ahead and admitted him on the spot, and David had his scheduled surgery the next day.

The neurosurgeon and his NO are very pleased with the results of the surgery. They got a lot of "crud" out---not all of it because they didn't want to change who David is, or impair him. We hope to be able to treat the remainder of what is left with chemo or something. We have to wait for the path report and the tumor board's recommendation. We will find all of that out on 10/13, which is when David's follow-up appt. is scheduled.

The doctors and the surgeons couldn't tell what exactly it is that they took out. Some of it was a cyst, some of it was tumor, and some may have been radiation damage. They are unsure because there was not much vascularity---not a lot of blood vessels that feed a tumor. So the portion that they removed might contain a mix of high and low grade glioma, not just all high grade. They said that's good news. I am cautiously optimistic because we've been given good news before and then had some nasty surprises. I'm waiting for that pathology report.

It is so amazing how they can dig around in someone's brain and then have that person be like normal right after the surgery. The next day ,David was up and taking walks, visiting with friends, reading college books, typing away on his Mac....just like nothing had happened. His surgery started at 12:30, was over at 3:30, and he was eating dinner by 7:30. He's very tired, of course, but neither one of us got much sleep in the hospital. The best part---no headaches! It was like a magical cure for his headaches. He's had them for so long....it's wonderful not to see him in pain. His incision hurts, but nothing like his headaches did, and his incision is already healing.

The next big issue will be the tumor type and how to treat it. NIH told me stuff that I just can't bear to type....survival rates, the rate of growth of recurrent tumors, that kind of stuff. If I think about it, it makes me so grief stricken that I can't even have a moment of peace. There's nothing I can do about it anyway, except pray, and I'm already doing a lot of praying! I want to enjoy these days with David when he feels good and can do things and just live his life. And NIH couldn't say for certainty that it would go they way they predict, anyway.

So...David had surgery on Tuesday, and we came home on Thursday. I stayed with him in the hospital, and I spent the night at his apartment last night. I will head home today, and he will have a friend stay over tonight and Saturday. He will come to church on Sunday, and I'll drive him back home after our family dinner. On Monday, less than one week after having brain surgery, he will go back to Portland State University. Pretty amazing! I have some concerns about his school workload, but I'm not going to tell him that he can't do it. (He's taking 18 credits.) We can deal with it later if it's too much for him.

That's where we are at today. Please keep us in your prayers...we are hoping and praying for a good report on 10/13.

Love and blessings,
Cindy in Salem, OR
PS I posted some more pics in my Expressions area on this site.

connsteele
Posts: 232
Joined: May 2011

Thanks for the update. So glad that your son made it through surgery in such good shape and that his headaches have disappeared. I'm amazed that he will be starting school next week? And I love the picture of him sleeping, mid-bite! All the best to you in your fight. Looks like his positive attitude will take him far.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am so glad to hear that David's surgery went well and his recovery is going even better.

It would be easy to say, "don't worry", but we all seem to do that so well.....lol......but try to focus on the positives and try not to let the negatives (NIH) get to you. I was only given a 20% chance of surviving surgery and here I am 17 years later getting ready for more treatment.

Live each day to the fullest of you and David's capabilities, that's all you can do. And remember, Each Day is a Gift to Be Shared.

Peace,
Teresa

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Cindysuetoyou, I am keeping David in my prayers. I have AA grade 3. I had open brain biopsy on Nov9, 2010, I too did not have any headaches after surgery (surprised doctors) but i was very fortunate, i really never had headaches prier either. I do get small headaches now since starting chemo IV. And my eyes go blurry on me when using them alot like reading, watching tv or playing video games. My tumor is inoperable. My neurosurgion said it was too big a risk to go back in, because of its location, he would never be able to remove it. After radiation (which i thought would shrink tumor) instead it showed it had grown in size. I had radiation and chemo pill Temodar from dec21, 2010 to feb 3, 2011. restarted pill march3, 2011 and they started me on Chemo IV august 1, 2011 and im still taking pill for 5 days every 28 day cycle. I am doing fairly well i guess, the IV does make me tired, sickly, and my memory is terrible along with forgetfulness. I can no longer work, I dont like staying home and praying for a cure and to be normal again. May God bless you and David. Ill will keep a watch on what type David has.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

Cindysuetoyou, I just read all your notes. thanks for the positive thoughts, they too help me deal with all this a lot better and it does help to see that there are positive outcomes out there for us. The neurosurgion i had whom done my brain biopsy told us when he said mine was inoperable, and that he would never go back in my head again cause the first time was too much of a chance, and he was proud that I was able to walk in his door and shank his hand and tell him how I was feeling, he said I was a miracle. And he didnt want to take any chances and take that away from me. He said if he knew he could remove it, he would, but he said it couldnt be removed and he was happy that I am able to enjoy my daughter. My fiance' asked him if he was giving me a life span, he said, "son I can't give her a lifespan, Only God knows how much time she has, I never give my patients life spans." "he said as healthy as u and me are, we could die before her, if it's God's plan". I liked this about this doctor. And it is, All up to God, we just have to lay it in his hands. Ill Continue to pray for you and David every night, God bless you both

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Cushla69.

Thank you for writing to me. I agree with your doctor....no one knows the length of our days except for God. NIH wouldn't quote time frames either, which I appreciated. I've heard enough negative things to last me the rest of my life.

David's surgeon sounds like your doctor. Our doctor did not remove all of David's tumor because it would have messed him up--changed who he is. That is something we wanted to really avoid having done. We are hoping to fight the rest of the tumor that is left with some sort of chemo. If radiation was an option, David might try that too. But I don't think that they do radiation more than one time, except in rare instances. David hated radiation...it really wiped him out.

We are waiting for the pathology report to see what the next best treatment plan for David will be.

If you get a chance, please look at my pictures in the expressions area of my CSN space. I just put up a few new ones of David.

Thank you again for writing, and please keep me posted on how you are doing. I will be praying for healing and peace for you.

Love and blessings,
Cindy in Salem, OR

blwaller52
Posts: 1
Joined: Oct 2011

Cindysuetoyou,
I have read so much about the positive effects of Turmeric. There are even some posts on this site about patients using this after chemo. My Husband had MRSA and the antibiotics weren't working. I bought a report on line that told the possitive effects about Turmeric. It fights infection, fungus, high cholestrol and it even mentioned cancer. I have learned that sugar lowers the immune system and feeds fungus and cancer. Therefore, my Husband has cut out sugar and taken the Turmeric (1 Tsp) with a couple of tablespoons of French Onion Dip and corn chips twice a day. Turmeric works best when taken with a fat. The MRSA is gone (after a month) and there have been other positive side effects. His hair is thicker and healthier, the fungus in his toenails is totally gone and he feels better. Since then, I have been reading more possitive reports on Turmeric. I have read a lot about how fungus and cancer are related. It's so unfortunate that most of the research for cancer treatment only involves chemo and radiation - because it makes lots of money for the medical professionals. My Son is a Master of Traditional Chinese Medicine and a licensed Acupuncturist. He is in India now doing more research for his doctorate degree. I like the way they look at illness. They treat, mind, body and soul. Chinese medicine uses natural methods to treat illness. They use herbs, tinctures, meditation, Ty-Chee, and acupuncture. I am amazed at some of the possitive effects from simple things like Cinnamon (lowers high blood pressure) and Turmeric (kills fungus, parisites, restores hair growth,etc.). Do your own research and don't take this information as "the Gospel", I am not a doctor. All I know is that you won't hear about the natural paths to a cure as long as there is so much money to be made from chemo and radiation and surgery. Also, last but not least, I believe in the devine healing power of prayer. We have had many people with "inoperable tumors" totally healed by the Lord. One wonderful Pastor who has an incredible healing ministry is Pastor Billy Moore at the La Vernia Christian Learning Center in La Vernia Texas. May the Lord Bless You

sadinholland
Posts: 226
Joined: Apr 2011

Cindysuetoyou,

David looks wonderful in your picures. I have also been following his progress on facebook. What a blessing for him to be doing so well and already back in school. I will continue to pray for him and your family.God Bless!

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