Before and after polariods...

Her are the before and after shots! The first image was taken in January, 2009 and the last image was taken June 26, 2009.

My lover man

Clyde is the litter mate of Chloe.  And this picture shows just how sweet he is.  I just got back from a few hours visiting my colleagues, and when I got back home, Clyde jumped in my lap straight away.  

Not only that, but he LOVES to tuck his little head under my chin and just cuddle and cuddle.  He sometimes stands right on my chest so that his head is above mine, and then rub his head all over my face (yes, Clyde, you own me).  Of course I try to keep him away from my wounds, but it can be hard.

Clyde also has a strange habit.  Whenever he is content and happy, he drools.  And I mean he drools a lot!  It's pretty gross, but when he does it I know he is just the happiest kitty in the world.  He's such a good boy and he makes me smile when I get frustrated at this whole long, drawn out ordeal.

My buds

The last month, especially, has been kinda rough. But besides my husband, the other creatures that have been constant companions are my sweet kitties.  

I woke up this week to the 'girls' as me and Kevin call them, snuggled up together next to me on the bed.  They don't always get along, but there are moments where they don't just tolerate each other, but perhaps enjoy each others' company.

Chloe is making the fierce face (I just happened to catch her in a full stretch and yawn). Simona (or "Mona" as we tend to call her) is the other cutie.  Don't tell Chloe or her brother, Clyde, but I have such a soft spot for Mona since she is our rescue kitty.

Mona literally follows me all around the house and is always the first one to greet us when we come in from outside.  Since they are all indoor kitties, though, they are all 3 pretty attached to me and Kevin and are always in the same room as us, even though they have a big house to roam around. 

They are constant and wonderful companions as I continue to heal.  

More Seizures??

Since my 2nd surgery, I've had some interesting symptoms pop up:

• Terrifying dreams in which I cannot breathe - like I'm having a nasty, nasty asthma attack.  I don't wake up during these dreams (I wish that I would), but all I know is that they are TERRIFYING.  I thought it was either my allergies acting up or anxiety from the last couple of months (both are very plausable explanations!)
• My tremor in my left hand has returned noticeably.
• My right eye has been twitching on and off most days.
• I smell a popcorn smell on and off all day even when there is no popcorn around anywhere.

I told Dr. Shaprio about the tremor and twitching and really didn't get a response.  I just thought that it's part of the healing process.  Which, to Dr. Shapiro's defense, is probably pretty normal healing stuff.

But taken together with the other symptoms, I really think that I'm having partial seizures, based on some research that I've done. I've got a call into the neurologist, Dr. Snook, to see what's going on and to see if we can resolve these issues.

YET ANOTHER REASON WHY PATIENTS MUST MANAGE THEIR CARE.  When you know something isn't right, don't give up.  And I want to get this figured out before the proton therapy starts.

Tiredness Part III

Yep, old man groggy is still with me.  Can't shake it.  I'm also out of breath in like 2 seconds.  My head is healing well from the marker surgery, but it's still sore.  Now my left side of my head feels numb.  And it's like, "hey, I didn't have a tumor, why are you infiltrating me now?"  With proton therapy, you're part of the team now, left side of brain!

I've noticed that my tremble on my left side is coming back slightly.  That's kinda annoying.  But the pressure in my ears continues to do really well.  I'm constantly hearing popping noises and weird things at night when I go to bed.  

Quick update

Finally starting to feel better after the second surgery.  I managed to clean out my work email inbox and do a little work for a couple of hours today.  It was nice, but it did wipe me out!  

I continue to be extremely tired, and my appetite is awful.  I feel like I've eaten a 5 course meal all the time.  Which makes it difficult to even shove anything down my throat.  Luckily, yesterday I could actually eat quite a lot in comparison to the past week.  Maybe that was my mom's great Easter cooking!  

I'm also feeling numbness and pain in my left arm and left heel.  It's strange, but probably just part of the healing.  It's something I'll ask Dr. Shaprio when I see him on Wednesday.  I'm getting my stitches out then!

Public Service Announcement

The hole in the middle of my skull is the Burr Hole they made to drain the hematoma.  The string coming from it is part of the drain that they kept in for about 24 hours to make sure they got out all the fluid.

My hematoma was the exact same kind as the one Natasha Richardson had: an epidural hematoma.  Only mine just had fluid and presumably hers had blood.  It develops in between the dura (the protective layer surrounding the brain) and the skull.  They think mine developed just because my brain had so much space to fill and didn't fill the space as quickly as it needed to, and so fluid ended up building up.   And I'm glad that it wasn't a subdural hematoma, which develops between the brain and the dura.  That would have meant that they would have had to go through the dura, which would have presumably just made the surgery that much more traumatic.  I'll take whatever luck I can get at this point in time.

But....had I not gone to the ER last Monday night and gotten a CT Scan, Dr. Shapiro wouldn't have known by the MRI I had on Wednesday (about 36 hours later) that the fluid build-up had almost doubled within that short period of time.  That's why he wanted to operate within 24 to 48 hours.  Time really was of the essence.

So, please, always go to the ER if you are barfing like crazy and have a headache, especially if you've bumped your head recently!  I felt stupid at first, but boy, am I glad I went!

Frustration

I am sick of laying on my left side.  I can't go outside because it's so windy and cold and that makes my sutures hurt.  And I'm still trying to get everything sorted out at MPRI with this latest delay.  At this rate, I'll be lucky to have the proton therapy done by the end of summer.

This latest setback really has me bummed out.  I just wish it was over.  I'm beyond frustrated and I just want my normal life back.  

When I was in the hospital, I did get to reconnect with one of my old nurses, Jason, when I was in the hospital.  He was my first nurse and helped me through that seizure I had in the room late in the day of my first surgery.  This time, when I kept crying to the neuro residents and to Dr. Shapiro about how much pain I was in after the surgery (and I really WAS crying), he was very comforting and patient with me.  He reminded me that having two surgeries so close together is very tough.  Even Dr. Shapiro was trying to comfort me.  

Kevin was his usual awesome self through this latest ordeal.  And Kevin's dad, Eddie, was also awesome.  He came up to help take care of the kitties (and Kevin).  And he was the perfect visitor right after surgery!  

When I was transferred out of the neuro ICU and into the regular ward, I had 3 roomates in a 24 hour period.  One older lady had just been diagnosed with pancreatic cancer, and was going to have surgery on April 27th.  Another just had half her pancreas taken out and was in a lot of pain - and in for a long recovery.  I guess compared to these two, I shouldn't complain...

6 weeks post-op

Still waiting to hear back from MPRI...hopefully I can start treatments soon.  I'm getting really annoyed.

Last couple of days I've been super duper tired.  I know it's only been 6 weeks, but my goodness.  Will it ever end?  

Quick Update

Things really are getting better, and I thought I'd focus this post on all the good things I've noticed over the past couple of weeks.  

For instance, I've noticed that the numbness is totally gone from my left side except for one of my fingers!  This is awesome news.  

I can actually sleep on my right side again!  This is great news, too, because my left side was getting so achy from overuse because I love my naps and my bedtime!  I also have more sensation (for better AND for worse) on that side of my head.  Which means I can really feel the pins in my head.  (Adding this picture as a reminder of just where those stupid pins, or whatever they are called, are located.  And boy, do I feel them!)

The 'frostburn' in both of my knees is totally gone!

I still love my naps, but I don't have to take naps that are quite as long as I was even last week!

I actually went to a very gentle Yoga class (it's more of a stretching class) that was so awesome I can't even tell you.  I am very sore right now, but it's a good sore.  My neck and my shoulders were just getting so tight and sore, you have no idea, and this has helped!

Okay, I'm not really driving all that much, but I can when I need to.  However, I will confess that I did get pulled over yesterday for speeding in a school zone.  But Johnny didn't give me a ticket.  Yeah!  I will be extra careful from now on!  And continue to drive only when needed!

I should hear something back about treatment at the Midwest Proton Radiotherapy Institute very soon.  I've been reading where other meningioma patients who had traditional radiation and years later they are experiencing issues like fatigue, trouble sleeping, visual and balance issues. I'm still not thrilled with radiation, but this option I can get comfortable with.  As Dr. Henderson said the other day, without radiation or proton therapy, there's a 60% chance of recurrence with this type of tumor.  My back's against the wall, but I'll deal.  I just can't believe that I even have this option!  

Neurologist Follow Up Visit

It has been a GREAT afternoon.  First, I stopped in at the office to say 'hi' to all my colleagues, just to let them know that I was alive and kicking.  It was awesome to see everyone and let them know that I am truly on the road to recovery.  They been incredible through all of this and I thank each and every one of them for their continued support!!  It was awesome to see you guys!!

Then, Kevin and I headed off to the neurologist.  This guy is a trip.  I don't think that he recognized me at first.  He was just absolutely amazed at how well I was doing - considering how big the tumor was.  He's just chatting with us for like 20 minutes, asking how I was doing on the Keppra, and then was really kind of asking me if I was comfortable staying at the dose I was on.  I'm like, "you tell me what you think!"   Things are going well, so I'm not about to rock the boat, at least for now.  So, we agreed that I'll stay on the Keppra for about 6 months, and do an EEG soon and then re-evaluate whether I need to stay on it for longer.  Sounds like an excellent plan to me.

What's even better is that I am starting to get my dignity back.  He's totally fine with me driving.  (Don't worry, I'm not going to go crazy with the driving and I promised Kevin I wouldn't drive if I'm really tired- like I am after my big day out today!)  AND I can even start to do Yoga when I feel up to it.  How exciting!!!!

Oh, and you'll love this about the neurologist...he was wearing Prada loafers! 

Post Surgery Blues

I'm taking 5 minutes to complain.  And then I'll get it out of my system.  The two weeks after meningioma surgery are no fun.  My head/scabs itch.  My numbness is still sticking around.  The pressure in my head is getting more intense, probably because I've weaned off the drugs.  My skin still has some frostburn.  I'm just generally uncomfortable.  And I feel like whining.  Now I'm done!

Staples are out!

Well, as you can all see, Jenny does not appear to be in too much pain!  This picture was taken while Dr. Shapiro was removing the staples (there were around 40 of those little buggers!).  Of course, it wasn't my head that was being messed with!

Seriously, Jenny has been such a trooper through this entire ordeal.  She has been a good home patient- taking regular naps, eating well, not yelling at her husband when I ask her 'how are you feeling' every 30 minutes.  Which I do appreciate a great deal!  

Post-operative CT Scan

Here is one of the CT images that was taken right after surgery.  This image, if you compare it to the MRI images, shows just how quickly the brain re-expands to fill in the space left by the tumor that was removed. The neurologist, during her rounds the evening of the surgery, indicated that the brain would fully expand with 12 hours or so.  It will be interesting to see what the first post-op MRI images look like.

Jenny's skull after surgery

So.. isn't this a cool image.  This was taken about 30 minutes after Jenny got out of surgery.  You can see the staples AND the portion of her skull that was removed.  It was nearly half of the right side of her skull!  Unbelievable right!  You can also see the devices that are holding that piece of skull in place.  I sure hope they do their job!  I don't want her brain falling out.  

Staples out Wednesday!

My first post-op appointment with The Wizard is Wednesday.  I'll post pics!  It's a good thing, because the staples are really starting to irritate me!

Making Progress!

I've had several walks outside since I came home from the hospital, but I am happy to report that today me and my mom ran several errands.  Grocery store, a run to her house, and then to pick up some lunch.  It was nice to get out and about, and it was definitely nice to stretch my legs.  I slept for 2 hours after the jaunt, but that's good!  It was a great day!

Tips, and other misc. info for surgery

The cobwebs are starting to clear, so I thought I'd put down a few helpful hints, reminders and other observations going into a surgery like this.  Hopefully other meningioma patients and their families will find this helpful!

1. I've said this in another post, but I'll say it again.  In the first 24 hours after surgery, do not get too close to said patient.  When the patient is whispering, it is probably not to say to visitors, "come closer".  In fact, I can guarantee that's not the case.  More than likely, they are trying to scream: GET BACK.  So. just. keep. distance. 

2. You will have had IV lines that will have been taken out right after surgery, so no one will know where you have been poked and prodded.  They will think that they will know where the IVs are by the ones that they left in, but that's just the tip of the iceberg.  I had extra ones in my hand, wrist and legs.  (At least I think.)  If you have friends or family that are like bulls in a china shop, do not let them touch you on the back of your hand, or leg, or arm.  It will hurt.  In my case, fingertips were fine.

3. Try to stand as close to the feet as possible and talk as quietly as possible.  Don't get too far behind or right next to the patient.  

4. Patients: get out of the neuro ICU as fast as you can!  I didn't realize how chaotic, noisy and stressful it was until I was out of the unit.  I actually wanted to stay there on my 3rd night because I was afraid to move units, but it is the BEST thing to do.  Dr. Shapiro made sure of that, and I am grateful he sent my behind over to the regular floor.  It was the best transition to going home.

5. I still can't believe how the whole hospital food thing.  It's like going to a restaurant!  Take full advantage!

6. The MRSA baths (to prevent hospital acquired infections) really really are terrible, but it's better than coming down with MRSA.  They wet you down with this soap that they can't wipe off.  It just has to dry on the skin.  And then you are damp.  And when you are 110 lbs, you can't get warm.  And it's really uncomfortable.  But suck it up.

Bruises

Actually, these don't look too bad at all!  I was just shocked to see how skinny my arms look.

I seriously feel like all of my bones are crushing against each other, I've lost so much weight.  Sitting in a regular chair is painful, and it hurts to walk unless I have a thick pair of socks and my awesome New Zealand sheep slippers that have lots of padding on them.  My heels just feel like they are g-r-i-n-d-i-n-g into the floor with each step.

But don't you worry - my appetite is excellent thank you very much.  My body just needs to sort all this stuff out!  And it will!