One of the Lucky Ones

Life has been full of smiles as of late.  We've received notice from Texas that my second round of the EBV+ Trial with the arm for relapsed and refractory patients is ready for me!  I will be receiving the first infusion on October 12th and then my second the October 26th.  

So, a favor to any of you who are able: We are scrambling a bit financially in regards to the flights, as the infusions are coming up.  Ideally, we'd love to have my partner to go with me as I'll be flying in and out of TX in one day and the pre-meds cause a bit of whooziness.  But for now, we're looking for flights just from PHL to Houston, TX, just for me.  So although I hate to ask for any bit of charity, if you know of any charities, or anyone willing to use frequent flier miles to help out this cancer patient, let me know! If you'd like to chip in just a few dollars you can always donate to the paypal account listed on the screen. (If you would like to donate your miles in any way, on either date, for myself or my partner, please email me at: RebekahFurey@mac.com so we could possibly discuss details) We obviously would be forever in debt to anyone who could help us, and thank you in advance for just reading this small paragraph.  

But on to to the good stuff! My ESR/SED rate remains unchanged this week, it is holding in the 40's, and we are thrilled about that. My weight continues to fluctuate between 126-128lbs, I am hoping as I contiue to gain now it is due to muscle mass! :) And the last piece of wonderful news is that since the infusions in TX are ready to go, we will scan 8 weeks post the second infusion.  This means that I will receive a PET/CT scan sometime during December, which will be the longest period of time my body has ever had time off from a scan since 2006 (pretty cool if you ask me).  If I begin to have any symptoms, drop weight, or my ESR sky rockets we will move the scan date closer.  However, O'conner says there is no need for a check-up since Dr. Bollard down in TX will be seeing me, and we can follow the EBV trial protocol-schedule of scan dates.

All in all, this is wonderful, wonderful news.  I will have the entire semester off from toxic-treatment (unless anything pops up on the radar), and we are giving Texas a second go and hoping this arm of the trial will do some damage to those pesky cancer cells. In the midst of my last year of graduate school, new cancer treatments/vaccines, and just life in general I can easily say that I am honestly one of the lucky ones, and life could not be more sweet these days.  As always, I thank all of you for your comfort, support and love and I hope you're all enjoying the change of seasons and life as much as I am these days.

As always, sending each and every one of you tons and tons of love & light :)

xoxo,
B.

Celebration-Rollercoaster

Two weeks ago my lovely entourage and I (my mothers: Darlene and Diane, and my partner: Rich) took the trip to NYU for my PET/CT scan to determine if this EBV positive trial was/is working that I received down in Texas.

At the time of the scan a few hiccups occurred: 1) O'conner was out of the office  2) my veins refused to cooperate during the CT scan, and only a PET scan was given during this time.  Therefore, we were a bit unsure about the results.  When I looked over the scan there was progression, but very minimial, and we only had the PET scan to go off of for information -- never a good thing for a refractory hodger, especially since this EBV trial is known to cause inflammation due to the killer T-cells that attack my tumors.

So, for two weeks my oncologist teams (O'conner, Zain, Bollard) discussed what should be done.  Yesterday, my entourage and I met up again, with O'conner returning from his travels and all doctors giving their two cents.  I was prepared to start Revlamid, or hop back on a previous treatment (SAHA) due to the fact that there was progression; however, my team had a different thought process.

O'conner's team is one of my favorites because they always see their refractory patients in the BIG PICTURE.  They take into account how the patient is feeling, their symptoms, their blood counts, and then the numbers on the pages of scans.  In three out of four areas I was excelling beyond all expectations.  My blood counts are the highest they've been in five years. I haven't held onto weight like this since before my diagnosis, and I feel on TOP of the world these days with energy.  And when you see me in person, there is no denying that -- and O'conners team has been sitting court-side.

So, after a quick run down we all decided that the best thing to do would be to milk this oh-so-good-feeling, out for as long as humanely possible.  On top of that, we really haven't given the EBV+ vaccine the best shot in the world, and we are looking to possibly do a second infusion in the next two months (if my next round is ready down in Texas).  Therefore, the conclusion is to wait and not receive any toxic treatment.

After the news two weeks ago, I feel as though these last scans from relapse to this recent visit has been an incredible rollercoaster of the unknown.  Is there disease? Is there not? Is that inflammation? Is the treatment working? Wait, if we have progression, why aren't you treating it? Without a CT, is that really progression? There are so many questions, and a lot of people take time and energy analyzing all of it, but this is where I get to step back and let all of those questions fall by the way side.  Sometimes, we don't need all of the answers.  Sometimes, it's okay to enjoy the unknown if we feel good.  And that is what I plan to do.

If you are going to tell a Refractory Hodger that they do not need to receive treatment for 2-3 more months, THAT is a celebration, whether there are 5 questions or 500, the conclusion is the same.  We will wait, I will enjoy this time without treatment, and we celebrate in the fact that I have almost a whole semester without having to worry about treatment.  It is something to cherish.

It has taken time and experience to enjoy these periods without anxiety ridden thoughts.  As others may have anxiety over: is the disease is growing or not, or question if a day of fatigue is because of cancer or just because it is too much.  But here, in our neck of the woods you will find me and my lovely entourage basking in the glory of this 'wait and watch period' without treatment, and enjoying every single moment of these non-treatment days... for as long as we can.

From now till november we will track my ESR levels, and meet with O'conner in two more months as a check-in to reassess.  But in the mean time -- we celebrate!

Love and light to all of you my loves,

B!