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!