Saturday, November 10, 2012

what is it like to go through this ??

the reason I called this Our brain tumor Journey is it's never something that is done alone. Kevin is affected by it and so is my son Joey. They both cried with me through all this and worried just as much if not more about what was going on in my head. It was found in Aug. 2010 when I noticed while sitting at the local lake that I saw double when looking to the left. It was eye checking month at our home and I made a appointment with Joey's eye doctor to have my eyes checked. as I went in she met me half way in the office running to greet me. she said that isn't a eye problem but something neurological and I needed a neurologist. So we found one at the local hospital who did a MRI and then called the next day to say you have a large brain tumor in there- where do you want to go find a neurosurgeon ? so we went to see that doctor and he did his own MRI and we found out what I had. A Meningioma. He said most people who have one where mine was will leave them alone since they grow very slow and are Benign. so we went on watch and wait and he said it could even be 10 years before anything was done about it. we found all the fun things this was doing to me- It gave me some fun side effects. Lots of head pain, not your normal migrains either.My eyes started having big troubles like black spots and the vertigo from the double vision was horrible ! I got osterperosis, skipped menopause because it messed up my hormones and oh the best thing is it made me fat lol I used to be so skinny that people told me to eat more. so move on two years and then one day as I walked into a shipping store, My eye decided to go on vacation. it went balck on half of it. I'm trying to read the paper in the shop and the lady tells me in her oh so sarcastic voice, your glasses are on your head. I said yeah I know, problem is my eye isn't working at all and glasses won't help. we went back to the doctor the next day and they said it was time for surgery. we walked out of his office and started bawling in each others arms. we were all set for a surgery date of Aug. 10th and then for some uknown reason the doctor left the hospital two days before surgery never to return again. so after a couple of good fellow brain tumor survivors gave me a new doctor name, we went there. Boy were we glad we did !!!! he did all the tests the other place decided were un nessary. My major arterie in my brain was being crushed so they did a angiogram of that to make sure I wouldn't have a stroke during surgery. That was weird but interesting !! a hearing testfound that I've lost some hearing in one ear. plus many other tests. then surgery was done. I woke up feeling like I had been kicked in the head by a horse. I gues the pain meds kept putting me out like a light so we asked for less to go home with. didn't work, it had to be stonger again because the pain was unbearable ! it felt like I had a flat ball where my head used to be. My eye doesn't open now but they say in 6 months it should heal and they think they saved my vision which is great because otherwise I would have gone blind. so the head feels very weird, it's like I had novicane all on one side and the other side is fine. My right side of my head is sleeping lol I can't drive till they ok it too since you can have seziures till all the brain swelling goes down too so I'm on anti spaz meds like Kevin calls them. They also cut your jaw mussel to get in there so big or very hard foods are out till that heals. I was very glad to have my surgery because this doctor showed us just how bad it was. He called it huge and very rare because of how it grew. Most stay in one place, mine started behind one eye, then went to my pituitary, then the other eye, then up and then started dribbling down ward. People always say you have to be careful not to use up tomany brain bucks because not only does your brain run everything it's also like your battery. Boy they wern't kidding ! Someone drove me to my cancer group and then I slept the rest of the day. wow I was beat !! Kevin and Joey both have been taking such good care of me ! I did go out and make jewelry today, even though only one eye works, I can still do it thank goodness ! it's not as easy because my depth perception is gone and it's harder to see but that will come back in time ! I've had some very weird responces in this time of finding my tumor. it's benign so no worries. yeah I'd trade shoes with them any day and let them have a surgion remove a soft ball size piece of skull and see how they like it. that and all the other fun that goes on when you have something growing in your hard skull when your body motor is in there trying to make you work. I know many that have died from these things ! the cost is killer too. Insurance covers 80% of the surgery which leaves us with how much after all said and done from a 250,000 surgery ? Youch !! But I'm alive and that's all that matters to me. I can live in a camper for all I care just so I have Kevin and Joey with me ! Now in three months we go back for a follow up MRI and see what's going on in there- how much is left and if I shall have radiation for the rest or another surgery. Everyone cross their fingers and toes please for just radiation ! Once on the surgery was enough thank you very much !!! so that's all for now. my short little story turned into a looonnngggggg post- sorry about that. anyway, thats all for now- Lisa


  1. Thanks for the update Lisa. You have had quite an experience. It's so good that you are recovering and are in such capable hands. I couldn't imagine going through all that you have.
    Hope you get your boiler situation straightened out.
    Hang in there. (You seem to be a pro at hanging in there)

  2. Kevin is still working on that boiler every day,. sometimes it works but then it decides its vacation and stops working again. time for a new one I think ! This on is very old but then since the house is 208 years old, it's no wonder !!

  3. Fingers and toes are crossed- remind me to never to complain about silly things again as they are nothing to this. Speedy healing to you!

  4. It's good to see an update from you. I also can't imagine going through something like you have and you have shown some amazing strength. Here's to your continued recovery!

  5. Thanks for the update Lisa. Thank goodness you ended up with this new DR. That situation with the other one scares me.

  6. Lisa,

    What a journey you have been through. I hope your 3 month check-up does not indicate the need for further surgery or radiation. Does NH have medical marijuana?


  7. Hugs Lisa,all I can say.Couldn't imagine going through what you have.You are a remarkable lady!

  8. Fingers and toes duly crossed! I'm glad you're feeling a little better, looking at the more recent post, by the way. All the best and warm wishes and thoughts!

  9. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?



    1. Cameron, I'm really sorry, I never saw your post till now. I have no way to email you since you don't have your email connected to your account. If you look to the right side of the blog, it says my name, click on that and then under my profile, it says email me or something like that. then we can chat. thanks ! Lisa