Ultimately Super News

On August 17th,  I was removed from the drug study for Vemarafenib.  I no longer qualified to participate because I chose to receive other treatment (whole brain radiation and gamma knife radio-surgery) in addition to taking the medication.  The purpose of the study was to demonstrate that the drug alone was saving the lives of brain cancer patients with a BRAF gene mutation.  (This is the genetic mutation that allows the brain cancer cells to reproduce so rapidly.)  Vemarafenib is a chemo pill that inhibits this function, thus shutting down the ability for the cancer to grow like crazy.

In my case, the drug appears to be able to slow down the process but not entirely prevent the cancer from spreading.  The advantage of being in the study was that I received this extremely expensive drug for free from the manufacturer.  Now I would have to to obtain the drug commercially.  That is once my insurance company was convinced to pay for it.  The process also involved finding a specialty pharmacy that could distribute it and at the same time was authorized by my insurer.  Suffice it to say - major uphill battle.

I was going to run out of the drug supplied by the study this past Saturday.  As of Thursday - despite a MAJOR effort, things did not look encouraging  for the new supply to arrive before then.  But how could Team Studzinski fail with all the extended support it possesses?

I am happy to report my drug arrived on Friday - talk about a Super Day!    Note the proof of our collective super strength below.  Surely this picture provided by the Vieira family of Rhode Island serves as proof of the power of our massive support network.

We remain beyond grateful for every one's contributions: prayers, cards, AND pictures.

Gamma Knife Recovery Progressing

I am happy to report that the pin holes from my last gamma knife procedure are almost completely healed (four pins are drilled into the skull to secure the sterotactic head frame). Not only is this a relief on a physical level, it is a rescue on a fashion level.

While my CVS 'peas' packs were an excellent way to numb my head and alleviate pain, they were not very chic (see above). Rest assured, these were not worn in public, so my reputation as sharp dresser is still in tact.

When I do venture out, I make the most of my phenomenal accessory collection - cute hats (see below), head scarves or my fabulous wig. Frankly, the wig is WAY better than any hair I ever had!  It is almost worth going bald.  Now I understand why wearing a wig was so popular in the sixties - kick ass hair without any effort.

Reminder to Have Fun

Clearly our friends Harry and Mary Brookes had the  concept of ' Go Big or Go Home' in mind when they created our Christmas card for this year (pictured at left).  They decided it was unnecessary to wait until December to 'send' it - not because they are under the impression that I won't be here to receive it - but to demonstrate they are actively embracing the concept of  HAVE FUN NOW!

Here is proof of my compliance below.

 



 

KMA for a Year Now (8/3/11 - 8/3/12)

Friday is the one year anniversary of the discovery of brain tumor #1.  Ironically, I will be undergoing gamma knife radio-surgery for the 5th time that day. An 8th and 9th tumor (which we have been monitoring since their appearance in June) have increased in size enough to require some action. 


It seems the tumor gods did not consult my suggestion list for how I intended to celebrate the fact that I have far exceeded the typical 3 - 6 month post diagnosis survival time. Rest assured, the "I am still alive and kicking" celebration will still occur.  It is merely being delayed.

Since every obstacle, in life presents an opportunity to improve our condition, the extra time between the end of this week and when I am back on my feet again will allow me to come up with something extra cool to do!