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Seizures? But getting better.....

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

Hi, everyone.

David woke me up on Friday night and said that he thought he might have had a seizure. Maybe. He wasn't sure. He described it to me, and I am sure it was a focal seizure.....not a tonic clonic one, thank God! He said that his leg jerked, his eyes blinked really fast, and his mouth and head pulled to the side. That's exactly how the seizures that I've observed have started out. He was scared Friday night and so was I. I think we will be forever traumatized by that code blue seizure that he had in the hospital....David asked me to sleep with him. It breaks my heart that he is afraid of a seizure. I wrapped myself in my horse fleece blanket and curled up on the bed with him and we watched a "Law and Order: Criminal Intent" marathon. I think I got maybe 3 hours of sleep.

The next day, I called OHSU and spoke to a neurologist on call. He told me that if David had 3 focal seizures like that within an 8 hour period, that I should give him 1 milligram of Lorazepam. He said that it should break the seizure cycle...he said to think of it like we were "resetting" David's brain. Scary...but I liked that thought. Larry and I had plans to go to the coast for the day and meet up with three other couples and just spend the day going to antique stores and the outlet mall and having some great meals. We usually stay for 3 nights over at the coast with these same 3 couples...it's our annual ritual and we love doing it. But this year...no way. But we went ahead and went to the coast for the day and met up with our friends. I had a hard time, but Larry loves to go so much, and he never gets to do anything fun. I have my horse and a lot of great friends, but Larry doesn't really have very many resources or outlets for the pressure he must feel about David. So we went. Our son Dallas and our daughter Cathy came over and hung out with David all day. They apparently had a great time! They even ran a few errands and went out for lunch. That sure made me happy!

That night, David asked me to sleep with him again because he felt "twitchy." He woke me up around 4 am and asked me for a Lorazepam. He said that he had TEN episodes of that leg jerking, blinking, mouth and head pulling. I couldn't believe it. I slept through all TEN of them! He said that they were not bad...about 5 to 7 seconds long. He never lost consciousness or anything. But still....I am pretty useless. I asked him why he didn't wake me up, and he said that he tried to, but I kept saying, "Wake me up in the middle of one." I must have been totally wiped out. I never feel like I ever get a sound night's sleep. And I wonder how hard he tried to wake me up. I think I was extra tired from the coast and from not getting much sleep the night before.

So he took a Lorazepam and he hasn't had any more seizure-type symptoms since. He took another Lorazepam last night because he felt twitchy and he thought it might prevent something. But I don't want him to do that again. I don't want the Lorazepam to lose its effectiveness...and he slept until 4 pm today. I think it was too much sedation, on top of the extended release morphine and the Dilaudid. So tonight he's going to try to sleep without the Lorazepam and I'm praying that he doesn't have any signs of a seizure.

So...tonight two of David's friends from way back in the day....friends from all the way back from grade school...came over and took David out to see a movie. I was very happy that he was getting to go out...but it was very hard for me. I didn't think he was up to it, but happily I was wrong! They had a good time and now David is all comfy in bed for the night. I've got my monitor on him and hopefully we will both have a restful night. If it doesn't pour rain tomorrow, I hope to ride my horse in the woods.

I have to tell you guys....I am really amazed at what David is able to recover from. He was so very, very sick and weak from the abscess, cellulitis, surgery, bacterial infection, seizure, etc. There have been several times that I thought he was going to basically be a shut-in or an invalid for the rest of his life. Just a few days ago, he could barely walk to the bathroom. He was using a walker in the house and he needed a wheel chair the day we went to the ER...that was just on Friday. Tonight he walked out to his friend's car, went to a movie and sat in a theatre for a couple of hours, came back home, and didn't feel especially tired. Julia, you reminded me that David was an athlete before all of this started, and you are right...he is able to recover. It goes to show me that you just never know what the next day will be like. It may be hard, but then again, you may be really surprised and find that things get a lot better. I've said it a million times....but what a crazy, unpredictable roller coaster ride.

I'm almost afraid to say it...but I think things are looking up for us. We have an appointment on Thursday with that seizure doctor...let's see what he has to say about these focal seizures.....

Thanking God with all of my heart for David's improvement,
and sending love and blessings to you, my friends and fellow fighters here on CSN,
Cindy in Salem, OR

Raani01
Posts: 68
Joined: Mar 2011

Cindy,
David is amazing, He will recover.I am so happy to know you and all through this site. It is a comfort to see we all are together on this journey and can be great comfort to each other. Thanks for the response in the other post. You are very nice.

Sending prayers and positive energy for today,
Raani

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy,

I am very happy that David is getting his strength back; my sister is probably tired of me saying that exercise is an independent prognostic factor in survival of brain cancer. I use to have to push her, but now she runs 5Ks on her own and she loves it. I believe that David is able to rebound because of his youth and his previous athleticism. It is one thing to beat this horrendous disease, it is another to survive the treatment for it.

I am holding on to the fact that David's previous MRI showed dramatic improvement of the tumor load. All his other complications are heartaches but not insurmountable.

With love,

J.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia:

Does your sister exercise while completing chemo? We have had a hard time getting Sarah to exercise on a chemo week. The week after chemo she has OT, PT, and speech. I was just wondering if I should push her more, but I feel bad because she feels so sick from the chemo. It is so hard to know what to do moment to moment. I hope you and your sister are doing good. God Bless you.

Edna

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I am so happy that he is doing better other than the seizures. I admire you for being such a strong person, and I am thankful for you keeping us updated on David! Most of all I am thankful for you encouraging each of us when we have a bad or good news day. You and David as well as your entire family remain in my prayers!

Michelle

aye2002
Posts: 6
Joined: Feb 2012

Hi, my name is Ashley and I am a Germinoma cancer survivor. After my 6 hour surgery, my neurologist said I had a .1% chance of ever waking up again and a 0% chance of being anything more than a vegetable if I did wake up. When I finally did away several days later I was paralyzed from just below my eyes to my toes and needless to say could not speak or make any noise. After countless hours of working with therapists, I was able to talk again and was put on a chewable anti-seizure pill called Dilantin.
It was a miracle drug for me! I was unable to take my morning dose once, because I'd been very sick and was in the bathroom at Duke Hospital when I had a very bad seizure. I came to between 10 and 20 minutes later (I'm not sure of the exact time) and my mother was as white as a ghost.
However, she calmly explained to me that I had had a seizure and my neurologist told me that a seizure was kind of like a "brain fart." So while seizures are no fun, especially chronic ones, with proper treatment they are not a big deal.

Best of luck to you!
~Ashley

BenLenBo's picture
BenLenBo
Posts: 141
Joined: Feb 2012

Hi Cindy,
Benjamin is out ice fishing with his buds today at Lake of the Woods, MN. Bachelor
Party that was to be held last summer- guy thing. I am so glad that David is doing better,
it's always hard to watch them suffer the side effects. My friend went from not being able to walk and in a wheelchair one day, and practically doing the jig the next day. You sound like an amazing mother. Wishing you only the best of news on March 15th.

I see where Benjamin must have been on the site again - he is curious now that he is doing so well and has gotten lots of encouragement from other Oli-3 survivors, that are 20 plus years out. I find it amazing how different areas of the country, treat cancers so differently and the people are suffering such great side effects. Makes me worry, I have seen so many people going for treatment at Roger Maris that are just like Benjamin, no side effects from Chemo/Rad- practically dancing out of the treatment rooms. Attitude must be the key to success!

Who are your exceptional cancer centers out on the west coast? People from all over the world come to the Mayo in MN. Benjamin has three cancer centers- Roger Maris, John Hopkins and Mayo, not just one facility is calling all the shots. Do you have those options?

Cindy- I am so glad to here you and Larry spent the day enjoying yourselves with friends. It recharges your spirit! We learned a few years ago when our oldest son was injured severely in an 4 wheeler accident, that you need a break and they needed a break from us. We relied on family and friends to give us even just a moring breakfast out at
a cafe, go for a drive, or even shop/run errands. At first it was hard to go, didn't think anyone could handle a situation like we could. SO, ENJOY YOUR HORSEBACK RIDE :O)

(((HUGS))) & PRAYERS!

Carol

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