Saturday, February 13, 2010

Happy Craniversary!

It's been about 3 months since I've written, but I'm back on the blog because yesterday was the 1 year anniversary of the craniotomy! We celebrated by going out to dinner with some friends, and we had a great time. And we're also getting ready to go on a mini (warm) vacation. Life can't get much better than that!

So to get you updated on what's been going on the past three months, here's a rundown:

1. I started going back to work. I'm probably working around 15 hours a week (and answering emails most times even when not in the office), so that's excellent news. I definitely try to keep my 'off days' when I don't go into the office very low key.

2. My love of reading has only increased. When I came home from work before surgery, I was quite content camping out in front of the TV. Now, I LOVE crawling into bed and reading some Sookie Stackhouse! I even read sometimes before I get my day going in the mornings. And I always read before I go to bed.

3. I started working out again. Then stopped because I was just so tired all the time. Now I'm back at it. The most I really like to do is 20-25 minutes easy on the eliptical. But I am doing my Yoga, and I absolutely love it. I'm up to about twice a week.

4. Kevin and I got through the holidays. I really didn't think they would be hard, but they were.

5. I discovered The Twilight Series. I blame Kevin for this. I was already obsessed with the vampires because of the True Blood series on HBO. He encouraged me to get the first book of the Twilight series when we were at Wal-Mart doing some Christmas shopping. I read them all in record time (see #2). I still think that Eric and/or Bill could kick Edward's ass. But I love them vampire stories!

6. I had my most recent panic attack on a plane 2 weeks ago. Kevin was with me and it was more to do with messing up my schedule than anything else, but I still do get panicky and weepy at times. But it's getting better.

7. I now liken myself to a baby. You mess up my eating or sleeping schedule - or throw in a long dinner with friends, or a lunch. Or anything where I have to do a lot of talking. And it is bad news. (see #6)

8. I went to Boston to see a neuroendocrinologist at Mass General, more to just get a second opinion on why I can't gain any weight and to check hormone levels. The trip was grinding (I met my mom out there, but had to fly there myself). But it was worthwhile. My thyroid is working well, but they emphasized that I need to get my T4 checked every 6 months (as opposed to having a TSH test). I have signs of hypothyroid but not enough to warrant putting me on anything, especially because it could cause me to lose weight. Not what I need right now. Oh, and I slept 14 hours when I got home (see #7).

9. My hormones are really working to normalize. I'm hopeful that things sort out on my own. Go body, go!

10. I've got 3 different haircuts! Basically, the left side is normal and darker. Most of the right is very fine blonde, with white wiry hairs sticking out. And I have a backwards "L" shape on my scalp that has still yet to fill in. Needless to say, this whole hair growing out thing is taking FOR-EVER. I guess it's to be expected when the beam was concentrated right below the surface of the scalp. But it's really pissing me off!

I won't be gone this long again! I've got another MRI coming up, and I'll post the results here!


  1. Happy Craniversary! And many more... :-)

  2. Hi Jenny & Kevin!

    Wow! what a year for you Jenny! I spent 2 hours reading the blog last night from top to bottom. What a courageous and inspirational attitude you have!
    I am a 32 year old Canadian named Pablo. I also have an A-typical grade 2 meningioma tumor. My surgery was now 20 days ago. I am experiencing many of the same strange post-op symptoms. The clicking of the heart beat almost constantly in my left ear and many tremors throughout the day. I also have had many not-nice dreams, and the inability to breathe is usually how they end. I also have the breathing problem when I am falling asleep, and sit up in a panic. Of course the fun of Decadron is fully up-loaded and raring to go! what an odd medication.
    I am really going about my homework looking into Proton therapy as it will be decision time soon. The only place in Canada is out in British Columbia, which traveling from Ottawa, our nations capital would be like you having to travel from Indy to L.A. Long way from home. Also it is not covered by our health care system.
    I hope that you are feeling better now a few months since your ann! if you have time I would love to hear from you, as a voice who has been down this road.
    And kevin,
    I must say, I am so lucky to have a wife as patient and caring as you have been for Jenny! What a difference a relationship like these have on our "getting through it all" time.

    As you have Jenny, I am trying to keep an upbeat humorous attitude, which has started with my new nickname to all my friends. The "Riddler", as for the giant question mark the 58 staples have left running down to the front of my ear. My wife, Julia has a website dedicated to children's interior design ideas, where she blogged about the last month and a half.
    Also if you feel you have the time my email is
    I would love to have the chance to chat with someone who has been down this road, but clearly looks on the bright side of life!

  3. Hey! Quick question, do you know what type of hematoma it is that you had...

  4. I found your blog through a google search of other tumor survivors. I had a craniotomy three months ago to remove a meningioma and a lot of what you say sounds familiar. My hair doesn't seem to be growing back very quickly either. My surgeon promised it would. I'm not so sure.

  5. I was googling a few things.. and came across your page. My name is crystal, and I am 26 - female from Wisconsin. had a peach sized atypical meningioma removed in april 2010. Had another surgery due to infection May 2010. Just a few weeks ago I completed Proton Radiation at Mass General. It is always nice to contact people with similar situations. Feel free to email me

  6. Nice blog, thanks for sharing the information. I will come to look for update. Keep up the good work.


  7. I had my brain tumor removed last June 2012 and after 6 months I am able to work and do normal task, but I can't seem to get back my old strength. I am interested because in your blog you said you did Yoga.. did it develop your strength? I am planning to get a beginners Yoga class you think its OK?

  8. What a wonderful journal of your experiences.....hope life's treating you well now. My mom is undergoing a craniotomy next week , I've sent her a link to your blog...
    Thanks and wishing you the best!

  9. Hi there! Thanks for sharing your blog and even your journey in life. The most common type of primary brain tumor is the meningioma, a noncancerous tumor that arises from the abnormal growth of the cells that form the delicate outer covering of the brain, called the meninges.

  10. Had GKS 2/2004 for parasagittal meningioma, right frontal lobe. Someone other than the real doc began the GKS. Real doc comes in half way through; says STOP! Need to recalibrate. They did and next morning woke up with fluid draining down the inside of skin on face from what I guess was broken blood brain barrier. Doc said stay away from office - don't come in, (as if I could). A year and a half of hell followed: tons of decodrone for edema, topomax for seizures, craniotomy to stop the swelling, small stroke following craniotomy, and MRSA infection from rehab hospital.....but I lived. Nine years later NOW the tumor us growing again. GKS or another craniotomy are not options. Traveling from Alaska to Barrow Neuro Inst in PHX end of May 2013 to see what can/should be done. Still only 2.6 cm transversely but this time I am so tired! Need to sleep 13 hrs per day. Weird for normally hyper person. Anybody else have this fatigue syndrome w/tumor? Lymph # down from 2.1 to 1.4 but docs in AK are clueless. So glad going to Barrow.