Relapse.

I write this with bittersweet tears, as I know all of you have cheered with me these last six months that I've held a remission. I received a Pet/CT for a six-month post remission scan on Thursday, and the news revealed shows two new nodes of 2cm with a SUV of 10-13. My disease is one sneaky sucker, and most of us were a bit shocked with this news: the caner is officially back, and relapse has occurred.

I have gained all my weight (and continue) and am at 135 (over my normal weight) no symptoms, nothing. Normally I am very in-tune with my results. However, with the disease very small and not spreading like wild-fire it might just be because its just beginning to grow back again.

My team, family, my partner and I were a bit caught off guard as I walked into that scan overly confident that my remission held. I haven't felt this good in years; however, I also haven't been so happy in my professional or personal life as I am now so that could contribute to this.

But all of this, every moment of it is bittersweet. Am I upset that this relapsed occurred? Absolutely. There were snapshots and flashes of the future that were in my head since the first words of remission -- and not that all of those are now thrown out the window. They're more or less put on a bit of pause, or viewed with caution. The bittersweetness is surrounding my entire family, loved ones, and friends. We are absolutely extatic that I acheived remission for six entire months. This: A) Gives us hope for the future B) Allowed me to gain my weight, strength (both mental and physical) back to where I was years ago. and C) Gave us six months of non-cancer festivities, such as me beginning an amazing relationship with a ridiculously supportive man, my brother and sisters graduations from college, finishing up all of my grad school course work, and just life in general. I have sucked the most marrow I could out of every day, and I don't regret anything from it.

So now -- this is me, signing back on -- we are back. (Feels like I'm signing back on to a radio/tv show, :) ). Another aspect of this relapse is the fact that my partner, came with me to receive this news -- with both of us preparing for another three months of remission. With the sudden hit, (and him with zero experience in the cancer world), he supported me beyond my expectations, communicating with my family and friends after the news, talking to my doctors, fetching food, drinks, and anything I needed, and then pushing me to go to CT for the holiday weekend to visit all of my college friends, as planned. With a confirming "we are now in this together," I couldn't (oddly enough) have asked for a better response or relapse now that this has occurred.

On top of speaking of a 'good time to relapse' Whether I was in remission or not, I was set to receive my EBV+ trial vaccine on June 17th and July 1st (that Marsha has been in! and others are not moving towards), in Houston. The timing could not be better, as we had this set up and nothing in my treatment plan has changed. So life, continues to be normal, and I continue to build my strength so I can battle it out when/if those heavy chemo's must reenter my life again.

Truth be told, I am shaken, and disappointed. I had visions of moving further away from home when I graduate next spring, visions of someday being a mom again (since my menstrual cycle is temporarily back) and visions of a healthy life again... however, I am extremely, extremely grateful and feel privildged to have had these six months as I know so many other refractory kids never have that opportunity -- it does not go unnoticed that so many of us go for years and years on treatment with hardly any break. Or those, such as Anne or Andy (who are now on hospice), or Chris and Zach (who have just recently changed their treatment again) are out there in the trenches every day. I see them, I see all of us, no matter what, and I hope it does not come off in this post that I am kevetching ;) in any way. I am grateful, for these moments. And I wish for all of us (in this refractory group) that they existed more frequently.

For now we focus on: me feeling physically well, and many options for the future...

I will definitely be updating information and anything else I can to contribute to Houston trial for those who would like more information, as it is definitely another avenue/option that many people who are positive are going towards, and many of Dr. O's patients are starting to be tested for as well.


Love & Light,
B.

Catch me if you can...

As the spring semester wrapped up, my family and I were able to celebrate my little brother's graduation: all with good health, and amazing smiles.  This is just a taste of my upcoming, traveling, summer.  In the next month, I will be in several different states.  So, catch me if you can... more pictures, soon :)

This coming weekend: Boston!

Next week: NYC,  Ian Axel Concert +  (6 month) PET/CT scan at NYU

Memorial Day Weekend: CT for a college reunion and to celebrate Max's first birthday!

June 17th: Houston/EBV Trial 

June 25th: Dispatch Concert in Boston, then flying out to Chicago for a wedding.

July 1st: Houston/EBV Trial

Phew. My head is spinning just thinking about all of this. But, I can't wait for every second of it :) Also a huge, huge, HUGE thank you and ridiculous love and gratefulness this month go to my Uncle Jay, Aunt Bob, Thel and Wendy and Alison for financial help in transportation.  I can never thank you all enough for your help.  

So! Catching up on life is my overall goal this summer: and Jake's graduation started it off just right!

Remember to hug the ones you love today,

as thoughts, prayers and strength go out to my fellow refractory kids:  Andy and Anne

who are both in hospice care at the moment. 

Love and light to all of you,

B.