a whole new meaning

Birthdays have a whole new meaning when you have to fight so hard to get to them. 
-- Jacinta Allen, caregiver/fellow friend

March ninth confirmed that I have survived and thrived on this earth for twenty eight years, as I entered my twenty ninth birthday.  The weeks leading up to this celebratory week were ones filled with exhaustion, frustration, fatigue, weight loss, low counts, anemia, fear, anxiety, instability, and disappointment.  With blood counts changing results just as quickly as a flip of a coin, the numbers being different every day, Revlimid causing issues, high heart rates, low blood pressures, and my hemoglobin tanking... something had to give.

I had planned to vacation with my other half for a few days, and then have a girls weekend with my three best friends in Florida for my birthday.  My amazing, generous, and kind Uncle Jay and Aunt Bob, generously allow me to go down to their property in March and receive a mental break -- that all of us, cancer patients so desperately need.  For months, this was the break I had been holding onto.  However, due to all the obstacles from this month, I feared that I would not have any energy to even enjoy myself in the sun with my love or friends.  Sadness ensued.

Two days before we left, however, O made an important call.  He took me off the Revlimid, I (between NYC and PA) received two units of blood, and was put on a high dose of steroids.  And just like that, something gave.  The shift began.

The week in Florida between the steroids, sun, seafood, people who I love more than life itself, smell of the ocean, being on the harbor, snorkeling, eating, eating, and more eating.  Was literally one of the best weeks of my life this year.  In fact, when I sat down with my NP this week she asked how my trip was, and through telling her I literally couldn't stop crying of grateful tears.  As both her and Rich looked at me probably thinking, 'what the heck is this woman crying about?"  It was just such an amazing trip and even thinking about it overwhelms me with appreciation and gratitude.

It has been a long road since June, between the relapse last summer, getting on Revlimid, discontinuing Revlimid, and now facing this shift.   I soaked up every meal, every moment, every piece of sunshine, conversation, sound of music, and smile I possibly could.  And with that, I started to regain some strength.  With the steroids I gained five pounds in seven days.  I'm so grateful that my friends helped me continue to eat (even though they felt stuffed most meals!).  Because with every pound, I felt stronger, refreshed, re-energized, renewed.  And with every day that was spent with my love and friends from childhood, I began to feel like my old self again.   I firmly believe that so much of my recovery is always due to people who continue to lift me higher throughout all of this adversity, and for that, I am so grateful.

By the end of the week, I felt clarity and strength.  Two visions I did not have in my mind before this trip.  Which brings us to these next two weeks, and what is to come.  Since returning from FL renewed, I met with O and the team on Wednesday for a bone marrow biopsy and blood tests.  For this week, everything appears normal (this is wonderful); however, we know how easily things can change.  We discussed next steps due to the fact that we both agree Revlimid just hasn't agreed with me and my quality of life, and we will have a PET/CT scan next week to see how large my tumor burden appears in my body.  Currently (due to steroids for a week) my SED rate is 8, but most likely that will not hold for much longer.

Florida reminded me how to breathe again, how to take a step back when you are in the midst of hell and can not seem to figure a way to look elsewhere.  Both my partner and I were beginning to dictate our lives only around doctors appointments, tests, meds, ect.  We were losing sight of the mental piece, taking a breath, and stepping back to regain clarity over the situation.   Luckily, I have wonderful family who encourages us to do just that.

Now I am five pounds heavier (117lbs!), filled with beautiful memories, energy, and the ability to make informed decisions over our next steps.  We will PET/CT on Wednesday, and most likely begin a small-baby dose of Bendamustine to bridge to a CD30 Trial at Baylor College of Medicine, similar to the EBV+ Trial that I participated in over a year ago.  I welcome these changes, am grateful to put Revlimid behind us, and look forward to deep breaths, more sunshine, and a calmness I haven't felt in quite a while.

I ate during 90 percent of this trip and it was amazing.

Prepping for our snorkel day... 

Water-taxi to Peanut Island, obviously deep in thought :)

Peanut Island

A windy-St. Patty's Day...

For those who have been asking and keeping tabs on me, I apologize for this delayed post and thank you for checking in about my health.  I am so grateful for the HL community and support.  Here's to a spring filled with great change, deep breaths and smiles.

Sending Love,
B.