The Indianapolis "hum"

So, if you're not from the area, the Indianapolis "hum" is a reference to our neighbors up north in Kokomo Indiana.  For several years, natives of K-town were convinced there was some sort of weird, low frequency hum that was polluting their air.  Numerous news stories were written, environmental studies were conducted, etc. etc.  Ultimately, there was never any evidence that this "hum" heard by so many even existing.  But, I'm convinced that it moved to Indy last week.  On Friday around 9am, this humming noise was quite apparent to all those up here in city of Lawerence.  I was working in my home office and Jenny was still in bed.  This noise sounded like some high powered vacuum system and it was REALLY annoying.  I just knew trouble was brewing upstairs in our bed.  So we had a slight meltdown in the morning..... really it was more of a full blown meltdown thinking about it in retrospect.

Jenny has always been very sensitive to the slightest noise- clicking of the ceiling fan, water dripping, my snoring.  Anyways, around 930am she calls me up and is quite hysterical wanting to call the Lawerence township center and give them a piece of her mind!  Friday turned out to be a very "sensitive" day for Jenny.  She was pretty frail all day and exhausted.  I think everything just finally came to a head.  But we did hear some good news!  The Midwest proton radiotherapy institute did call and let us know that Jenny's insurance company has been very pleasant and the insurance arrangements for the proton therapy are being worked out. Finally some progress!

Jenny also was experiencing the "wind in the ears" again so she called her Neurosurgeons nurse and we have a follow up appointment with him on April 1st. He also ordered another MRI for the morning.  I suspect that Jenny still is experiencing some swelling in her noggin as the decadron gets worked out of her system.  She has been off the steroids for about two weeks and they do stay in your system for a little while.  Regardless, getting the MRI done on Wednesday will be good.  She would probably have to have one for the proton therapy so this is killing two birds with one stone.  We are also meeting with her GI docter to review everything.  Jenny has not been able to put on any weight over the last three/four months and meeting with the GI doctor is good step.  We both suspect that there is some sort of hormone imbalance but we need to get the scientific proof from the team of doctors.

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?  

The Pacers and Cancer

So, what do these two have in common?  There's some controversy in Indianapolis about the Pacers not being able to afford their $15 million in operating expenses for Conseco Fieldhouse.  I may have all the details a little messed up, but bottom line is that there is question about whether the Pacers are going to stay in Indiana.

Cancer patients, and even 'pseudo-cancer' patients (as I like to call myself) definitely have a stake in this fight.  The new Mel and Bren Simon Cancer Center in Indy is world-class, and as a patient of this fine facility (and ancillary facilities) I'm fortunate to have some of the best researchers and multi-disciplinary teams to treat my stupid tumor.  The Simons (who own the Pacers) certainly provide much more to the city than just the sports, entertainment, and hospitality industries.  

Yes, this is tangled up in a much more complicated issue, which I won't go into.  But many in Indiana are saying "let them leave".  But if you have cancer, or have been touched by cancer, or even have 'psuedo cancer', the answer isn't always so cut and dry.

The Waiting Game

Before I update everyone, just wanted to let you know that my sister-in-law, Beth, is having surgery tomorrow.  Yes, it's been a rough 2009 for our family.  Please keep her in your thoughts and prayers!

So, I'm still waiting to hear from the Midwest Proton Therapy Institute on my schedule.  That's because we're STILL waiting to get approval from my insurance, which I'm sure is dragging their feet.  I hope that I don't have to get out the can of whoop-ass!  I want to get this started and over with ASAP.

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!  

Kevin here again....

Greetings everyone! Kevin is back on the job tonight!  It has been a few weeks since I have posted on the blog.  I promised Jenny that I would do the next post. First and foremost, Jenny is doing quite well and I continue to notice improvements everyday.  Her energy levels seem to grow stronger as every day passes.  I was a little worried about going on our little hiatus to the Biltmore Estate but she was a trooper.  While I was geeking out about the technology this home had in the late 1800's (power -dc current-, central heating, telephones, etc, etc) she was patiently waiting!  Everyday continues to become more normal.  

I know everyone is waiting to hear the news about our meeting with the Radiation oncologist- so here you go....

We had our initial consult with Dr. Mark Henderson.  He is part of the Mel and Bren Simon cancer center team.  They have multi-disciplinary teams that focus on specific parts of the body.  Dr. Henderson primary focus is Head/Brain/Neck issues.  Both him and his resident were super.  They took time to answer our questions and address all of our concerns.  As everyone knows, Jenny's friend was considered an 'atypical' meningioma.  I guess they are pretty rare but they have a higher chance of localized return (ie. return in the same area) so the theory is to radiate the area where the tumor was located.  This includes the tumor bed, plus a marginal radius of 2-5mm around the tumor to nuke any of the cells that might still be lurking about.  The basic premise is that by hitting this area with "fractional" daily doses of radiation the abnormal cells DNA are more delicate than normal cells.  Also, the normal cells can repair the damage inflicted by radiation whereas the abnormal cells cannot recover and die.  So they typically will administer these fractional doses daily over the course of six to eight weeks.  However with any treatment there are always risks.  Radiation is no different.  Exposure to radiation -large or small amounts- can cause problems 15 years down the road.  The indirect exposure to x-rays since they travel through the human body could cause problems down the road.  Think of it like this, if you point the x-ray at the left side of your head then they will continue through your brain and exit the right side.  This wake of radiation exposure can cause problems. The particular course of treatment our Doctor recommended was Intensity Modulation Radiation Therapy (IMRT).  For an overview here is a helpful link.

However, being located in Indianapolis we have another option that our Doctor recommended called Proton therapy.  This stuff is really amazing!  Finally we have a choice for change.  The only problem is that the center is located in Bloomington Indiana next to the Nuclear Cyclotron facility.  Instead of utilizing X-rays this treatment uses protons which do not travel through the human body (if you want a detailed explanation... go find a physicist).  The protons are highly focused beams of energy that only travel 1-2mm beyond the tumor plus the beams can be highly shaped to focus all of the energy on the shape of tumor.  Our Doctor explained that the long term risks are lower with proton therapy.  But the down side is that Jenny will have to travel to Bloomington everyday for seven to eight weeks.  Our initial reaction was the IMRT would be easier and it would not make that much of a difference.  After further discussion however, we both started thinking about the fact that this facility is literally in our back yard.  I will mention that there are only 6 or so of these facilities in the United States.  Here is a link to their website. These facility cost around $150M - $200M to build and the technology is amazing.  So after having one of the best neurosurgeons in the country do the surgery why would we turn our back on this option!  As I have said to Jenny in the past, only the best for my love...  So, Jenny emailed the Doctor Monday evening and told him that she wants to get the ball rolling on Proton Therapy ASAP.  

Over the next week Jenny will probably have another MRI and CT scan to map out the treatment.  She will be fitted with a Hannibal Lecter style mask for the treatment which completely limits her movement while being treated (I promised I would not make any comments about fava beans and a nice glass of Chianti).  The margin of error in the targeting process for proton therapy is limited to 1mm whereas IMRT is around 3mm.  I would rather be safe than sorry here!  I don't want them missing the target and blasting her ear off or something!  The treatment process will probably start the last week of March or the first week of April.  So finally there is an end in sight...  

I have decided that once she starts her treatment, I will purchase some fluorescent tubes and hold them next to her and see if they glow!  If they do, I will definitely figure out a way to get a picture posted online!

I should also add that Jenny is starting to get really antsy at home and cannot wait to get back to work albeit part-time starting off.  I would be remiss if I didn't mention how supportive her office has been throughout this entire ordeal.  This has been a tremendous weight that was lifted off our shoulders on day one of this journey and we are both so grateful to everyone at Jenny's office.  You all know who you are and you are all making a difference in the jobs you do everyday.

Anyways, sorry for the lengthy post, but I wanted to catch everyone up on the progress... till next time.

The Biltmore

Here's a picture of me and Kevin outside the Biltmore estate yesterday.   We had a great time, and luckily I was feeling better each day.  

The weather was crappy the entire time, but we still had fun.  Took a great tour of the house.  It was an hour and a half, and about an hour into it, I was slowing down big time.  In fact, our tour guide asked if I was okay.  I said yes, just recovering from surgery.  Luckily yesterday, we just did one hour long tour, which was much, much better for me!  We had great meals, and it was a nice break! 

Tomorrow is the big radiology appointment, so I'll let everyone know what the plan is moving forward.

A Bit of a Break

Some good news for today.  Kevin and I will be leaving tomorrow for Asheville, NC to stay at the Biltmore.  We're going to be driving (and when I say "we", I really mean Kevin!) and it will be nice to have a change of scenery.  We both need it!  Especially ahead of the big appointment with the radiation oncologist on Monday.  

I'll post some pictures, 'cause we're taking the computer with us.  It'll probably be pictures of Kevin alone ('cause I'll be sleeping!), or pictures of me taking a nap.  But that's okay.  We've got tickets for a couple of tours.  Hopefully I can make it through them.  But if I have to bow out early, then I just have to bow out early.  We're also looking forward to checking out Asheville.  They have some awesome restaurants that use all locally grown and organic food, so that should be cool to check out - if I can make it out of the hotel room!

I'm literally sleeping about 14-16 hours a day!  That's no exaggeration.  It's all from the Decadron withdrawal.  This drug sucks, as I've said before, but it's a necessary evil.  It looks like all my other symptoms (slight fever, extreme tiredness, joint and bone pain) are attributed to this withdrawal.  I guess after a person has taken decadron for 3 weeks, their adrenal glands shut down.  Weaning from decadron is like going through drug withdrawal.  It sucks!  But I just gotta stick it out and realize that it will get better!

Still exhuasted...but good news, too!

So, I'm still struggling with EXTREME tiredness.  In fact, I slept in until nearly Noon today! Impressive.  I had mono in high school, and had extreme tiredness.  But this is like 100 times worse.  I know that it's just something that I'm going to have to deal with, with my brain healing and all!  And I know that the radiation is just going to probably take the tiredness to an even higher level.  It's just so frustrating.  I called the nurse practitioner yesterday to let her know that in addition to tiredness, I was achy and had a slight fever.  She asked me if I had been "active" over the past couple of days.  So I was definitely busted!!  Lesson learned - I did WAY, WAY too much last week.  

She thought that the rest of the symptoms were normal, and she's going to keep in touch with me over the next couple of days.  She really didn't want to put me back on steriods, which is good.  So, this is officially the longest I've gone without steriods since the beginning of Feb.  I have a feeling some of this tiredness and achiness is attributed to weaning off the 'roids.  But this is good - and good for the healing process.  If I can just get through it.

But the good news is that the numbness on my left side is slowly getting much better.  I attribute this to my session on Friday with Jude.  My legs are almost completely better.  Just still dealing with two of my fingers on my left side and the left side of my back.

Another interesting note:  I keep noticing a clicking noise in my sinuses.  It doesn't hurt, it's just really funky.  Kevin found an entry on a great message board (meningioma mommas) that explains what it is.  Basically, it's caused by the plates and screws and the titanium mesh adjusting to the brain cavity filling in with cerebral spinal fluid.  Cool, huh?!

Fragile Day Today

For a smile, I thought I'd post a picture of my 'nurses'.  Clyde is on the left, Simona in the middle and Chloe on the right.  One of them is always with me.  They are really confused as to why I'm home all the time now, but they are good company and definitely make me feel better!  They are the biggest sweeties in the world!

Today has been kind of a rough day.  I think it's because I have had such a busy 3 days or so, that I think things are catching up with me.  It's been 5 days since I took my last Decadron (steroid) and I can definitely feel it.  My head feels a little thicker.  The good news is that I only feel the heartbeat in my ear very infrequently.  So...that's very very good news.  I have noticed an increase in pressure in general in my head, but I'm using the wait and see approach.  It isn't anything that I can't handle right now.  I'm just so exhausted today.  I didn't get up until nearly 10 (which was actually nearly 11 with daylight savings).  I stayed up for about an hour and a half, and felt so achy and tired that I went back to bed.  Until about 30 minutes ago!  I took some pain meds and I feel much much better.   I'm just not quite back to my bad-ass self.  This is probably the reminder that my body needed to continue to take it easy.  

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! 

File this under "Overshare"

My excuse for this weird post is that I'm recovering from brain surgery.  Actually, I think it's pretty funny.

So, the scabs on my head are healing really well.  But unfortunately, I now smell like healing scab. I can't get the smell out of my nose.  It's totally barfing me out - I can't get away from it.  Kevin assures me that I don't smell, though!  So all you visitors should be safe.  I promise!

"Alternative" Treatments

Some of my postings may seem to be dogging western medicine, but that's totally not what I'm about.  I'll take whatever I can get, and I think it's important to explore all options.  Believe me, after going through major brain surgery, I LOVE western medicine.  And it's saved my life on more than one occasion!  (When I was so sick with Crohn's in 2002, I truly believe Remicade saved my life.)

At the end of last week, I was able to visit two of my alternative practitioners.  One is my acupuncturist, Mitch.  He's awesome, but unfortunately he's moving so I've got to find another one in town.  But we worked on calming points, digestion, and tension in my upper back.  Let's just say with two needles at the top of my shoulders, I could feel the tension melt away!

The other is a lady named Jude.  I'm totally going to get the explanation of what she does wrong, but I'll try anyway.  

She's an RN by training, but now works with patients using a hybrid of techniques.  One is N.A.E.T (using kinesology - testing to see how certain substances affect your muscles, indicating a weakness or allergy- and she works to help your body overcome these sensitivities - NON INVASIVELY), she also does cranial/sacral therapy, and she combines all this with mind body techniques.  Some people think this stuff is hooey, but I have seen results in the 4 years that I have been working with her.  Best of all, she works with western medicine to help your body react as best as it can to treatments.  Run away from practitioners who aren't willing to work with your western docs!

The thing with Jude is that when I had run out of options for treatment with Crohn's, she did give me some alternatives.  One includes probiotics, and two other supplements that include plant enzyme blends including amylase, lipase, and bromelain.  Jude gives options when western medicine may not have all the answers right now.

Here's what happened.  After 2 years on Remicade, I developed an immune reaction to it that caused a Lupus-like syndrome.  It took them a long time to figure this out, and I was just married, had swollen joints and couldn't move.  It was horrible.  Remicade uses mouse DNA, and there have been more reports of more problems with this drug because it uses non-human DNA (and therefore is probably cheaper to produce).  But I digress...

Then I move on to Humira, which uses human DNA instead of mouse.  I knew in the back of my mind that I only have a limited amount of time on these TNF blockers - I just knew the same thing was going to happen.  And it did.  Within 2 years.  That's when I added acupuncture to the mix several months before I started having the same reactions with Humira.  I wanted to get my body in the best shape possible to handle what was coming next....

Because during this time, I was also on an immune suppressant called 6MP (Purinethol).  The trouble with 6MP is that it can mess with your liver.  And after nearly 5 years on 6MP I had to get off of it.  It was crazy.  My GI doc was talking liver transplant and all sorts of crazy stuff.  Luckily, my liver went back to normal levels after about 4 months, but not before we had a massive scare with my biliary ducts being inflammed.  They were thinking that I had some autoimmune liver disease.  This sh*t was getting too crazy for me. 

When my GI doc suggested that I try Tysabri, a drug for Multiple Sclerosis that had been pulled from the market, and then put back on the market, I said, "TIME OUT".  I am doing well.  Tysabri has been linked to the human form of "Mad Cow" disease.  No, thank you.  Tysabri will be an option of last resort.  I want to try these other options that I have with Jude, and let's just slow down a little bit.  She agreed, but I don't think was too pleased.  A colonscopy was scheduled in April of 2008, and ALL LOOKED GREAT.  GI doc was amazed.  She still wanted me to go on a very low dose of 6 MP, and I said, let's just wait.  Had a follow up in June of 2008, and all was well.  The basic take away was, "Keep doing what your doing.  I can't argue with the results.'

My point in all this is that as a patient, you need to be aware of all options available to you.   Don't be afraid to seek out options that help put YOU in control of your destiny.   And in hindsight I am grateful to have overcome several significant health challenges before I faced probably the grand daddy of them all: the brain tumor!   It gave me a whole other perspective and a sense of calm that I just can't describe.  I just KNEW I was going to be okay.  And I can't describe it any other way than that.

A Memo to Decadron

Dear Decadron,

You are a vixen.  I love you because you have taken away the pressure and pain in my head again. But I hate you because you are sucking the life force out of me.  And you give me night schweats. And my thirst can never be quenched.  But tomorrow is the last of this taper.  And I hope that I don't have to use you again.  But I'm not counting us out - I have a feeling we'll meet again, unfortunately.

My Meningioma Vitals

More info from the final pathology report:

In addition to being Grade II WHO meningioma (jump down to the atypical - I have sheets and a mitosis as high as 7), here are some other interesting findings:

* pre- and post operative diagnosis: right convexity meningioma

* official procedure performed: craniotomy

* meningioma size: 7 x 7 x 2 cm (nice size - bigger than a baseball, not quite as big as grapefruit!)

* section of dura actually removed: 7.4 x 8.1 cm

* other findings: tumor cells are immunoreactive for progesterone receptor

Women are affected with meningiomas more than 2:1, so there is a strong suspicion that hormones play a factor.  In fact, since a teenager, I have been hormonally challenged.  Strong suspicion that I've probably had the meningioma for decades.  Then you add outside (and non-human I might add) hormones to make me 'appear' normal, which probably just added fuel to a fire (the meningioma) that was already there.  And something that was probably causing my problems in the first place!

In fact, I've done research, and you will find lots of women in their 50's who have been diagnosed with a meningioma, after they have taken hormone therapy for menopause.  

Some interesting articles on this subject:

Oprah, and the bioidentical hormone debate and menopause

The Women's Health Initiative Study: The estrogen plus progestin trial stopped in July 2002 after investigators found that the associated health risks of this combination hormone therapy outweighed benefits.

How this affects my other chronic diseases: Crohn's Disease and Ankylosing Spondilitis

Many of you have asked whether my other health issues could have been affected by this.  It's hard to say, but when your brain is being crushed, there's no telling how the body compensates for that!  The next several months will be fascinating to see how my body reacts to the tumor being gone.  And you can be sure that I will do everything I can to work with my doctors to figure all this stuff out and manage it appropriately.  This truly is exciting, and marks the beginning of the rest of my life!