More poking, prodding and radiation!

Kevin and I got back from Bloomington this afternoon.  Yesterday was a fun-filled day of bloodwork, x-rays and yet another MRI (with dye contrast) in preparation for the 'fiducial' placement operation today.

Instead of having the usual external 'tattoo' on the skin that goes along with radiation (indicating where the radiation beam is focused), proton therapy requires fiducials - a.k.a. markers or bb's (as in bb gun) - to even more precisely focus the beams.  These fiducials are placed on the skull and are about as big as a pin head.  I will have them for the rest of my life. They are MRI compatible and I shouldn't set off any alarms at the airport.  

So, yes, I had to go under general anesthesia again today.  3 times in 2 1/2 months.  I hope this is the last time ever!  I'm exhausted.

I was also lucky enough to have yet another CT scan (with dye contrast) after the surgery today and even more x-rays.  I think this officially puts me in the radioactive category!!  It's kind of scary.  I've had 4 MRIs since January 09 and 7 CT scans since December 08.  Most of them included the dye contrast, too.

The picture above shows 2 fiducial placements.  I have 4 all together.  While not a big deal, they are kind of sore, and in the most inconvenient places ever.  One is right behind my right ear exactly where my glasses lay.  Niiice.  And they used my previous scar from the first surgery to insert the one smack dab in the middle of my forehead.  Double niiice.  

The others are on my right side just outside the skull flap (the part of my skull that they removed in the first surgery), and the last one is actually on the left side of my skull farther above the ear and back just a little bit.

But the GREAT NEWS is that I am on closer to getting back to normal and I am just excited to get the treatments started.  We're still looking at the initial meeting with the Doc down at MPRI on May 13, with the first official treatment on May 14th.

Progress!

Moving forward with original MPRI schedule this week.  It's kinda been a cluster trying to get all the docs on the same page, but it FINALLY happened today, I think in large part to Dr. Mark Henderson.  

Wednesday, Kevin and I will go down to meet the neuro team who will literally put the screws in my head.  Then I will meet the MPRI team who will treat me.  Good times.  Just hoping for no more complications.  

Still looking at first treatment date of 5.13.  Let's hope these next 2 1/2 months fly by.  I am so ready to be completely done with this drama.

Will post more from Bloomington on Wednesday/Thursday.

Proton Therapy Schedule

Finally heard from MPRI!  Here's the deal:

Wednesday, April 22

Meet with neurologist in Bloomington and pre-op bloodwork at Bloomington Hospital.

Meet at MPRI so they can make the mask that needs to be custom-fit for treatments.  Meet with care team.

Thursday, April 23

Surgery (yes, another surgery!) to implant markers that will help guide proton beams.

Another MPRI meeting for more bloodwork and mask stuff (I think!)

Wednesday, May 13

First proton beam treatment and meeting with Dr. Johnstone, who will oversee my treatment

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.