In the Blue

I'm a Pisces, by sign and as both my Irish-Catholic Nan and Jewish Bubba would say -- by heart.  The identified sign of a Pisces are two fish.  Though the description of my sign bodes well with my personality, it is the Pisces element of water, the ocean, and finding relief in these pools of relaxation that I find most congruent.  I am always so grateful looking back on my childhood and remembering specific moments of relaxation and tranquility surrounded by what I considered pools of heaven.

I grew up with my brother, and my nine cousins on the Jersey Shore every summer at our grandparents tiny bungalow near the ocean.  My other earlier memories of holding my breath for just a few seconds were at my Uncle Jay and Aunt Bobbie's pool.  Both the men on my father's side were once life guards, and with my mother's family rolling around in the ocean even before they came out of the womb -- I was bread to swim, and I loved it.  But my very first water experience was with my mother at a babies YMCA course.  She tells me that while all the babies were screaming, I just looked up and kept smiling and cooing at her.  And it just continues on, at three months I spent my toes in and out of the Atlantic Ocean.  My family told me they started bringing me into the water at my uncle's as early as one year.  I started swimming on my own at five or six.  And I started training to swim my entire uncle's pool without taking one breath at age seven, accomplishing the goal at age nine.  The water was my home, being under water was my haven.  Now, even at age twenty- nine one of my greatest loves (even though I've only been a few times) is snorkeling.  Being under the water, and not hearing nor thinking about what is above.  Just disappearing and watching the beauty, floating, life is effortless in the blue. Effortless, when you can breathe... and stay under at the same time.

However, as much as water is my haven, it's only when you are able to stay under when snorkeling and have your breathing tube, is it truly relaxing.  Holding your breath in any other way, is straining.

Last June, after our beautiful trip to Hawaii I started becoming really ill again for the first time in a year.    The cancer started progressing but we weren't sure if it was cancer, or a kidney infection -- or both.  It was a summer of pure hell. I don't think I made it to the beach twice, if that.  I was in bed, in a hospital, or at Dr. O's.  It took us all summer to differentiate the kidney infection, plus cancer progression.  If you believe in signs, phases or cycles, last year felt like one as before I fell ill I lost my grandfather (of those eleven grandchildren that adored him and flocked to him at the Jersey Shore).   I lost Lily, my companion of fourteen years,  I lost my summer, and this fall my grandmother after losing her husband she lost her home: her beach bungalow, her independence, and our future summers, due to Hurricane Sandy.

Following my lost summer, and Hurricane Sandy, Revlimid prevented me from hardly any quality of life. I had amazing moments this year.  Unfortunately, I can count the weeks I was out of bed, out of the hospital, or out of Dr. O's office on one hand.  Between one of my college friend's weddings and Florida which were the two highlights of my year since last June.  I am fortunate to have those memories.  I am fortunate I was able to not have shingles, not be hospitalized, not be hooked up to fluids or blood for those few weeks.  But the rest, since last June I've been grasping for breath.  Straining.

After the blows of Revlimid, and the diagnosis of MDS, and now onto a new treatment that will hopefully help manage the MDS and chip away at the cancer.  It's once again been a rough start for several reasons.  A few weeks ago I began having classic "B" Hodgkin's symptoms (fevers, night sweats, chills, over and over).  These symptoms make you feel as though you've run marathon after marathon and are drained only to gear up for the next night of symptoms and hope that you are at least able to sleep a few hours between changing, showering, and breathing through the pain and fevers.  To give Dr. O credit where it is due, he did ask me to start at 400 mgs of SAHA to begin this treatment.  I refused knowing I am the side effect queen.  Unfortunately, I began at 100 mgs which has been an uphill battle since.  Every week I started a dose, the "B" symptoms have subsided.  Then, on a Wednesday or Thursday they rage back even worse than the last time.  Thus, we up the dose to 200mgs. Now we are up to 400 mgs, a normal dose -- it has been one night and nothing has subsided yet but I am predicting it will soon. In hindsight, Dr. O and I joked about how maybe next time I should listen to a world renown oncologist, instead of a twenty-nine year old with a masters degree in counseling.  And, I will in the future -- for a majority of the time ;). Something wonderful I am holding onto is that my ESR/SED rate before the SAHA while I was off treatment was 110, now with only a light dose of the SAHA it has come down to 80.  We will take that -- small improvements.

My timeline starts in June, not January this year like most people.  I start from June because that's when I started holding my breath.  I feel like I am seven again, trying to get to the other side of my Uncle Jay's pool.  Loving my life, loving the water I am in but determined to get to the other side.  Each time I think I am close to holding my breath and reaching the other side, my side of relief, breath, love, calm and still.  My side of no more pain, fevers, night sweats, canceling plans, losing weight, taking ten pills a day.  I have been struggling, straining.. grasping to stay under water, between the losses, disease progression, change of treatments, thinking... we will get there. I will be able to release.  It will all come soon.  However, with most of these thoughts I've come to breath too soon, I haven't reached any relief. In fact, I've swam back to the beginning and started the process all over again, week by week, or month by month.

But now,  I can see the other side of the pool, just as I did on those sweet summer days in the cool water where the colored tiled walls of the outskirts of the pool gave signal to reaching the perimeter.  This time, I really think I might touch it.  I just have to hold my breath a bit longer.  I have to keep pushing forward, moving, swimming towards it.  Then I'll be able to take my breath and I can once again enjoy the amazingness around me, the effortlessness that was here last June.  Then, I can embrace the rebound, the rebuild, the strong breath that I am so desperately yearning for... and a new cycle this June.

Let's just hope it all comes soon.

Another June of rebuilding, summer after transplant in 2008. 

Lastly: I will definitely have a 'thank you donation' post very soon, as I track all of the wonderful, amazing donors that are going to make Seattle and few other transplant research visits possible this summer.  I can not thank you enough for your generosity and continued support and confidence in me as I continue this fight.  As always, every penny helps and if you would like to contribute, just click on the 'donate' button over to the right hand side of the blog under the 'Labels' section.

Sending love and sunshine,

B.