1st update

Just spoke with the support nurse and they just finished up with the pre-surgical work- positioning the body, setting up the mri imaging systems to help guide the doctors, etc, etc. It usually takes anywhere from 60 to. 90 minutes to do all of this prep work. All of this work is done while she is "snoozing".

I should get another update in 90 minutes. I'm trying to stay calm, but it's really hard. I appreciate all of the thoughts and prayers, I really can't tell you how helpful it is.

Kevin
Sent via BlackBerry by AT&T

Jenny's off....

Jenny was just taken back to the OR. We should get an update in about an hour or so. We were told to expect about a 3 or 4 hour surgery. She is in good hands.....

Kevin
Sent via BlackBerry by AT&T

The pre... Pre-registration...

Well... The big day is here. It's 615 and jenny has been taken back to get changed into the high fashion offered by the IU medical center. We'll be back with her shortly.... More to follow- Kevin
Sent via BlackBerry by AT&T

'Twas the Night Before...

Hey everyone,

Just a last minute message from Jenny.  I'm ready to get the show on the road.  I had the best night's sleep last night, and I felt the most refreshed I have been in weeks.  So, needless to stay, I am READY for this, and ready to get on the road to RECOVERY!

Kevin will be updating the blog tomorrow.  But in the meantime, I'm sporting a new haircut I thought I'd share with everyone!

Thanks to everyone for their thoughts and prayers.  It means more than you can ever know.

Love,

Jenny

Less Than One Week

Just a quick post for tonight.  I'm glad that by this time next week, Tommy will be out of my head...finally.

I have been feeling much better this week, and my mom has helped out a ton.  I'm just still very tired all the time, and not eating as much as I should, but that's okay.  There's an end in sight.

To make up for my lack of appetite, I've been juicing up a storm this week, with celery, broccoli, kale, cucumber and various other sprouts.  It's easier for me to drink stuff than eat sometimes! Kevin's been juicing up wheat grass for me (Clyde LOVES wheatgrass, too) and I've just been trying to get as much of this goodness in me as possible!  I want my immune system in tip top shape for the hospital.  

Even before all this happened with the meningioma, most of you know that I really do try and watch what I eat, to help manage the Crohn's and ankylosing.  Not that I'm perfect all the time. (But I did give up my Coca Cola habit about 4 years ago and have never looked back.)  I even just got an email today about a seminar from the Crohn's and Colitis Foundation on nutrition, diet, and managing Crohn's.  It makes a difference!  So, at least I have some previous experience tinkering with my diet and nutrition to help me prep for next Thursday.

That being said, I have a couple of great books that I'd like to share with everyone.  These books are awesome and provide insightful advice about how food can make a difference in your health.

Healing with Whole Foods: Paul Pitchford  (This was a great recommendation by my acupuncturist)

Crazy Sexy Cancer Tips: Kris Carr (Yes, the 'c' word is scary, but you know what?  It provides great overall insight into all things nutrition and how you can help your body - no matter what illness you are up against)

 

Peace,

Jenny

Headaches and Hallucinations

So part of the reason for Kevin starting this blog is that he found the most helpful information while researching meningiomas from other bloggers.  Yes, we want to keep everyone updated, but we also wanted to be a resource for others (and their spouses!) going through the same thing. There is nothing like experiences of others to help understand what one is in for pre- and post-surgery.  So, some of this information may be overkill, but I think others going through this would find it interesting.

HEADACHES: I noticed last week that my headaches were becoming more frequent, especially in early morning and at night in bed.  This is probably attributed to the fact that I was off pretty much all meds except Tylenol, and the previous courses of prednisone had truly worn off.  It seems worse when I'm not sitting upright.  I had been able to manage it, but Monday I hit a wall.

I was up most of the night on Sunday night with a bad, bad headache.  There was no way I was going to make it the next week and a half without something else to manage the pain.  Kevin convinced me that I needed to call the nurse to see if there was anything else they could give me.  I have never been in more pain than I was in Monday morning.  Luckily, they were completely understanding and called in a script for Decadron (anti-swelling, basically a heavy duty steriod) and Vicodin for pain.  Unfortunately, I had to wait the entire day for this to be filled, so I spent most of the day in terrible pain.  AND I had to get my stealth MRI and bloodwork done in prep for surgery.  Luckily that went pretty smoothly.  But since Kevin HAD to be downtown yesterday, I got my friend Laura to take me to my appointments because I didn't trust me driving.  For 3 hours she was with me, so big shout out to her.  I couldn't have done it without her.

Kevin picked up my scripts on his way home about 6:30.  I literally attacked him as soon as he came in the door and took the meds.  It took about 2 hours to fully kick in, but I felt like an entirely new person.  Thank goodness, because I couldn't have stood another day like that.  It was awful.

HALLUCINATIONS: So I finally managed a little bit of sleep on Sunday night/Monday morning and about 5:30 I woke up again.  I must have fallen back asleep soon after, but I had the scariest experience.  I swear I heard men's voices in our bedroom, talking about me.  Then I had a full body shiver, which was just really weird.  Then, I had one of those experiences where I was awake but could not talk, could not move one body part.  I was petrified.  After about a minute, I was able to move.  And I woke Kevin up.  I was freaked out and so was he.  It was all side effects from the Keppra.  And I still was just exhausted.  (I probably was awake for only 6 hours total on Sat.)  Keppra is just really really tough to handle.  I think this is the worst part of the whole ordeal.  

So, combined with my horrible headaches, and this very very scary experience and my total lack of energy and sleepiness from the Keppra, it was time to call in reinforcements.  I called my parents in S. Carolina and told them that they needed to get up here in the next day or so, because I just couldn't handle the roller coaster anymore.  

So, my mom arrived last night and I couldn't be more thankful.  Just having someone with me during the day is comforting, and she's helping with everything.  Cooking, cleaning, you name it. I just don't have the energy to do any of this.  And I don't really feel like cooking because my appetite is pretty weak.  So having someone to make the food is so helpful.  And it takes the pressure off of Kevin.  Big props to Nana Jan!!!

I just hope that all these medications don't cause more side effects.  But I gotta do what I gotta do, and I'm taking it one day at a time.  And most importantly, I don't feel like my head is going to explode anymore.  I can deal with the sleepiness, but I couldn't deal with the pain.

More on Chief Nursing Officer Jan, Kevin and 3 'nursing assistants' (felines Clyde, Chloe and Simona) in an upcoming post!

The Neuro Visit

Hi everyone!

It's me, Jenny!  {Waves}  I'm finally feeling up to writing (more on why that is later), so I thought I'd pick up the story where Kevin left off.

So, the visit with Dr. Shapiro was pretty standard.  I was a little nervous, and of course Kevin was a lot nervous.  Kevin didn't come right out and say that he thought I would need surgery, but he did say that he thought the Doc would put me on anti seizure medicine.  I didn't really know why, but I've been kinda in the dark throughout this whole ordeal, so I let his comments slide.  I was seriously thinking that there's no way I was going to need to have surgery.

I was wrong.

After about 5 minutes with Dr. Shapiro, and conducting some simple neuro tests (walking with feet in front of the other and all that jazz), he came out with:

"It's a pretty big one (meningioma) and it needs to come out."

To which I responded with a laugh, "You've got to be kidding me!"

No joke.  He proceeded to give us an overview of the procedure and answer the many questions we threw out at him.  I'm wondering how I'm going to tell my parents.  UGH, yet another health-related thing to deal with. My poor husband.

(Side note: I do have ankylosing spondilitis and Crohn's Disease and have had some really, really bad times since 2000.  BUT, what's so ironic is that both of these conditions are under control right now and I'm probably the healthiest and fittest of my life.  So, I must have really bad genes or really, really bad karma, or maybe both!)

So, we waited about 10 minutes while Dr. Shapiro and his nurse set things in motion.  First, we had to pick the date of the surgery.  I could have done it at the end of January, but we were also given the option of Feb. 12th.  We took the 12th for many reasons, especially logistics of getting my parents up here, and frankly just to give me time to prepare myself mentally and physically for the operation.

Dr. Shapiro indicated that I would probably be in the hospital for 2-3 days post-surgery and then a recovery of 6-8 weeks.  6-8 weeks!  This whole thing is getting ridiculous!  Can I not just ever get a simple sinus infection?!

So, I left with instructions for getting a Steath MRI and blood work in preparation for surgery. I also left with a script for Keppra, an anti seizure medicine....