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.

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!  :-)