On a lighter note

Looks like Kevin and I are off for a long weekend to the Biltmore before the radiology appointment!  We are very, very excited.  It will be a much needed change of pace, along with fresh air and sunshine!

I'm gonna glow soon....

So, we did get the final pathology report.  And instead of a WHO grade I benign meningioma, it ended up being a WHO grade II atypical meningioma.  It's still benign, but atypical ones tend to recur.  So.....I'm looking at a course of radiation in the near future.

I've got an appointment with a radiologist on March 16th to discuss options and course of action.  Yes, I'm somewhat bummed about this, but as Dr. Shapiro said, "you will lead a long, normal life".  I'll just be seeing him more.

Argh, it's just one more thing.  And more stuff begets more stuff begets more stuff, know what I mean?  With more potential complications.  And more potential for side effects.  Even if it's not right away, who knows what potential side effects radiation will have on me in 10, 20 or 30 years from now.  

Of course we've been doing research, and it indicates that patients who have grade II atypical meningiomas with complete removal (as I did) in conjunction with a course of radiation actually have less recurrence than patients who have grade I meningiomas with no radiation.  Yes, it's probably the right thing to do, but it doesn't mean that I'm happy about it.  Dr. Shapiro, I'm sure, just doesn't want to have to do the same surgery on me 5 years from now.  And neither do I.  But from the patient perspective, it's just more complicated than that.  I'm thinking about how it could potentially affect all aspects of my health - now and decades later.

MEDICATION UPDATE: I did call Dr. Shapiro's office about the increase in pressure at the base of my skull, and the fact that I'm now hearing my heartbeat again in my right ear.  These were all the original symptoms that I had pre-surgery.  They indicated that they may have tapered me too quickly off the Decadron.  Perhaps my brain just needs more time to settle down.  So, I'm back on the big "D" for about 5 days, and then we'll see what happens.  

The farther down the recovery road I get, the more I realize that with this type of surgery, it's all a guessing game as to how much, how long, etc. for the medications.  It's just depends on the individual, and one just needs to be patient.  It's all mad science!  :-)

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.  

The healing process

So, it finally and officially feels like my head was in a vice at some point in time over the last couple of weeks.  It's kind of shocked me that up until now, I haven't had too much pain.  But you can definitely tell the front of my forehead is swollen, and I do have the sensation that the right side of my head was torn from my skull and I still can't open my mouth very much because it's too sore.  Sorry for TMI, but it's true!  I just think with all the medications finally wearing off my body is now super sensitive.  And I can't get this damn fog in my head to lift!  It's like I'm in super slow motion...

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!

Releasing Mom

We're just about to take my mom to the airport, so she can resume her normal life.  It was three weeks ago to the day when my parents got the call from me that I needed help big time.  And within 10 hours, my mom was here!

My mom put in some serious time these past three weeks, and we can't thank her enough.  Cooking, cleaning, keeping tabs on three very naughty kitties.  You name it, she did it.  So help me in thanking my Mom for yet another job well done.  And for Mom's all over the world who stop everything they are doing to help out their children when they need it most.

Thanks Mom!!

The Dreaded Decadron Taper

So, it would have been nice to know just what this steroid really is all about.  I know docs don't want to put things in your head, but they could have warned Kevin to be on the lookout for certain side effects.

After complaining earlier this week about the massive bone and joint pain (which I thought was just the uncomfortableness of surgery), I thought that I'd look research more about the side effects of the big "D".  

Turns out, it's a side effect/withdrawal of decadron.  Who knew more pain would be caused by medication side effects than the actual surgery.  It's a necessary evil, it just kind of took me by surprise!

The pain has progressed to what I call 'frostburn'.  All up and down my body.  It's a lovely sensation that combines sunburn and frost bite.  It's pretty painful and uncomfortable.   But if it's the worst that I'm dealing with, I am doing SO MUCH better than many other folks taking or tapering this drug.  It can be brutal.  And I mean brutal.

I took my very last dose of the big "D" today.  So we'll see how much longer these symptoms last.  Could be 2 days.  Could be 2 months.  Who knows?

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!

Close to Home

I didn't realize how lucky I was to be in Indy...with top neurosurgeons in the country in my back yard.  It dawned on me when all the nurses asked me where I was from, and one of them said to me, "we have people coming in from Nebraska for this kind of surgery". 

If you are faced with this kind of diagnosis, obviously you have to do your due diligence to find out what is right for you.  But the experience and talent that are in Indy, and at Indiana University Hospital are world class.  These folks know exactly what they are doing.  There is a whole history of why Indy is one of the best neuroscience communities in the US, but I won't digress.  Just do yourself a favor - and make sure that you at least consider coming to Indy for this kind of surgery.

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!

Here's What I Remember

From the morning of surgery:

• The surgical team was all business.  I started to freak out when I said goodbye to Kevin and my mom.  The nurse was there to calm me down before we got into the operating room.  She was good.
• Walked into the OR and there were about 5 people there - several nurses and the resident anesthesiologist, whom I had met earlier that morning.
• They moved very briskly to get me on the table and IV started.  They had no problem finding a vein and it didn't hurt at all.  The whole process was awesomely orchestrated.
• Some issues with latex - switched it all out at the last minute.  Resident anesthsiologist indicated I just had redness issues and no breathing issues.  Head anesthilogist said 'yeah, I've heard that before' and they switched it out.
• Nurse makes comments about me being skinny, and all i could think to say was, "it's the keppra diet'.  Yes, I know I'm skinny, and why every goddamn nurse had to comment on my weight each day was annoying.  Don't you think it could have something to do with the tumor growing in my head?!
• Then the 'wizard of oz' (aka Dr. Scott Shapiro) makes his entrance.  Not one moment before he needed to be there.  It was awesome.  More on this later.
• I remember Shapiro waking me up and saying it was all done.  And I remember thanking him.
• I knew I was getting a CT scan - and then I was aware of having 2 seizures right in a row.  That sucked.
• I remember being back in the NICU....and too much going on.  Too many people.  Trying to say hi and getting too close.  In a few days I will write a list of 'what NOT to do' when your friend/family member comes out of brain surgery.  Bottom line: "back the 'f' off' and don't crowd them.
• I clearly remember the 3rd seizure in the room.  The nurse was awesome.  I remember calling Kevin's name and saying "seizure".  I remember people holding my arms and legs.  I remember coming out of it saying, "I'm all right, I'm okay, I'm okay".  And breathing as deeply as I could.  And hopefully I'll never have another one of those again!

I'm Baaack!!

Well, here I am!  I'm doing really well everyone!  

I guess I wasn't fully prepared for the entire ordeal because it has been a little more, uh, intense than what I had expected!  To say the least.

I feel great, not too much pain.  Just feel like I'm in a fog, walking in a dream.  Which is actually kind of cool.  Lots of naps.  I think that half my skull on my right side was taken off for the surgery, and that's just the general achiness I feel, but nothing that isn't resolved with some Tylenol!

I wasn't expecting or prepared for the seizures.  And I wasn't prepared for the numbness and lack of control on my left side.  But that's just my pride talking.  It will come back very soon. I'm taking walks and getting up and about!  Each day I feel better and better.

Jenny's home!!!!!

I really don't need to say much more.

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Sunday? Going home!

There is a good possiblity! Her neurosurgeon stopped by the morning and said everything was looking good. The tremor in her left hand is gradually decreasing and she was moved out of the icu early this afternoon! Fingers and toes crossed over here!

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Another picture!

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Some more pictures...

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It's alive!

Finally, the sweet helmet has been removed, Jenny has been taken for a walk and she just ate a huge breakfast! Here are a few pictures... Might be a little graphic for some but just suck it up!

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Had to sleep.. Blogging had to wait.

Well its been over 24 hours since the surgery. Jenny is alert, chatting, eating like a horse, complaining about pain, all good things. She did manage to get a few hours of sleep last night which helped. Fortunately she has not has any more seizures. She had two right after she came out of surgery and one around 630pm on thursday.

The only issue that Jenny is having is her left arm has a tremor and it is much weaker. Remember the right side of the brain controls the left side of the body so that would explain the issues. She has already spoken with a neurologist and they are confident as the brain heals so will the weakness. Her left leg seems to be doing okay. She is still in the neuro ICU at this point in time. I would bet she gets moved later today to the general neuro beds. They have doubled her dosage of keppra (anti-seizure medicine) to 1000mg 2x per day.

I also attahched a picture from today. She has a sweet gauze helmet on! Don't worry about the spots on the front. Those are just sharpie markers that circled some bleeding right after surgery. They do that to monitor if there is any excessive drainage. But fret not, all is well....


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Forgot to mention

The rn team has been awesome. Especially our night shift rn- phillip morris. Yes you heard me right, phillip morris. I was going to crack a joke or say something like hey phil got a light but I'm sure he has already heard them all. Kinda like michael bolton iin office space or george michael in arrested development... Except this isn't hollywood!

But seriously these guys (all of them have been male rn's) have been super.

Later... Rj reynolds
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Goodnight

Well still with jenny, she had another seizure around 630 and it really scared both of us but the nurses assured me she was in good hands and the neuro resident said everything is okay.

Jenny's parents and my dad went back to our house to hopefully get some rest. I'm bedside all night just holding jennys hand. I hoping she will get a little bit of rest knowing I'm here just watching over her. Till tomorrow....
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Tired..

I'm with jenny in her room she is obviously very groggy but she spoke with all us and grumbled at us a few times about invading her space. She had two seizures while in recovery which can happen after surgery. But she is resting at the moment....

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Just give us 15 minutes...

That was 1hr and 15 minutes ago... Jenny is finally in the neuro icu and they keep telling me "give us 15 minutes and then you come back"..... I briefly saw her getting wheeled into thw unit, she was all bandanged up and appeared to be sleeping. I just want to see my wife!!!!!!!! For the love of god.....

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It's benign!

Just spoke with the doc. Everything went perfectly, no blood loss, the tumor was completely removed, and more importantly the pathology report came back and the tumor was completely benign. This is great news. The doctor said she is already alert and talking. It will probably be a couple of hours before we get to see her. More to come.....

Kevin
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2nd update

Good news, the nurse indicated that Dr. Shapiro is already closing. The nurse said he is already stitching the dura over the brain to close up the wound.. The nurse said, that he said everything was going great. The nurse expected that we would probably be speaking with doctor in the next hour or so. He usually goes up to the recovery to observe as his patients as they are coming out their little naps and then he comes down to speak with the family.

Kevin
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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
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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
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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
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'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....