The Luckiest: Our Caregivers (part two)

When I say that I'm lucky,  I don't think people really grasp the luck that I have.  Although I have a life altering illness, a terminal one at that.  I've survived for over seven years. Seven fucking years... (excuse me, as I'm getting a little salty-mouthed in my day).  Who says that? I do.

But the luck doesn't come with my health -- give me a break. From my Minimal Change Disease of the Kidneys, to cancer, to MDS.  Good lord, I've been dealt a shitty hand with health.  But with people? My life? My stamina, the love that surrounds me? I'm the luckiest.  (Ironically as Ben Folds plays "The Luckiest" on my spotify as I write).  But truly, between my silent warriors, and the ones I'm about to write about in my next few blog posts, no one could ever comprehend the true grace, brilliance, kindness, and generosity that not only my family but complete strangers (yes all of you), have contributed to my healing, to my passion, to my will to keep breathing even in the depths of such pain.

It's an honor some days, to know that people are inspired, or derive some kind of will knowing that there is someone out there who has lived for seven years with Hodgkin's.  I know, because I watched it happen when I looked up to the pioneers of this disease, Alese and Adrienne -- the women who showed all of us.  That this is possible.

But I defer, I'm here today to write about my insanely generous Aunt B and Uncle J.  My family, the Rosan's have quietly stepped into my life after I have parted ways from a relationship with my biological father.  There was never an easy way to reconnect with my family on my father's side, but once I was diagnosed with my HL, The Rosan's broke down all the emotional walls.  They broke down the barricades, and everything else that I had constructed to possibly keep that part of my family at a distance -- and destroyed it.  They demolished it.  Instead, they gave me love, they gave me stability, they gave me comfort, they showed me what love was, real, true, raw, gritty, love that does not take no for an answer.  And for seven years, they've been modeling and showing it to me.  And there are not any words that could ever justify how incredibly, sincerely, thankful I am for these two wonderful people.

My uncle has shown me what it means to be a man in my life.  He has stepped in as a father figure in so many ways I can't even list them.  From supporting me emotionally through this hell of a disease, to being at my Master's graduation, with my Aunt B telling him that they always want to help me in anyway possible.  They are two of the most outstanding people, and they do so much -- not just for me, for their children, their grandchildren, complete strangers.  They are the complete essence of the hebrew saying Tikkon Olom "we are here to better the world."  They have shown me, how I want to grow, how I should achieve my goals, wants and desires.  And these two people are some of my greatest caregivers.

Just writing this small passage makes my eyes shimmer a bit with tears because between my silent warriors (my mothers), and these two individuals, I am truly the luckiest woman in the world.  I have more love, support, guidance, praise, and belief in me and my choices from these four people -- and that is more than most individuals could ever say or speak of.  I may have been dealt a shitty, shitty hand health wise, but in all other aspects of my life. I am so grateful. I am so, deeply, sincerely grateful for the people who choose to surround themselves in my presence.  Just as if my mothers were not in my life, if it weren't for my Uncle J and Aunt B.  I would not be here -- I guarantee it.  I wouldn't be here, sitting in my beautiful apartment, having a graduate degree, breathing in life, smiling and thinking how fucking lucky I am.  I am the luckiest.

Sending so much light,

B.

My silent warriors: Our Caregivers (part one)

I have attempted numerous times to write this post.  Everything I write never seems to justify how much our caregivers do for us, or what their roles are whether they be our parent, our partner, our sibling, or even just a good friend.  What I do know is they are earth angels.  They are what (if there ever was a god up there) what god intended the best of the best and most genuine, helpful, kind, strong, beautiful people to look like.  And, I, and so many other cancer warriors are surrounded by them daily.

The one thing I really dislike though about our caregivers is that they never, ever get the credit they deserve.  I realize we are here fighting for our lives, but I assure you my friends, I would not be here writing these words to you without my moms, Darlene and Diane, my partner, Rich, and my Uncle and Aunt, Jay and Bob.  These are people that reach down to the bottom of their souls, and when they have nothing left -- they dig, and give me more.  They give me more to keep living, and somehow, I keep breathing.

For example.  Last week when we were in the ER for over twenty four hours.  My mother, who thoroughly enjoys her sleep.  Just sat upright for over a days time, just to watch me, to make sure no one touched me or accessed me or fought with me, or did ANYthing to me (as we heard of knives being in other patients pockets if they wouldn't be moved soon enough.)  She protected me, as she always does, did and I know until she's here, she will.  For years, my mothers have pushed aside their personal and professional freedom and lives to help me recover, year after year, from our days in the transplant ward a straight 25 days of in patient that doesn't even tough the inpatient ICE days in the hospital.  Everyday, every night, Diane or my mother would be by my side.  Diane would make rice pudding and other forms of food I could easily ease down my throat, my mother would form relationships with me and my nurses, to make sure we received what we needed.  We were a team, they were and are my advocates. I live, due to their choices, the times they told a nurse "no, she's allergic to that" or "no, you can only access her port, after five sticks it's TOO much."  or basically "no you're insane if you think you're giving her that drug."  Or the times, that we would plead for a push of benadryl, and only our favorite nurse would assist us ad make sure we'd receive it.  The times, where they'd sleep on the hospital floor one year during the holidays, when our floor had no heat and it was below freezing out, where they gave me their coats, and shivered for days so I wouldn't die. Literally die, of pneumonia.  Or the times they would let me cry and cry and cry, and wonder when this part would pass... They are my silent warriors.  They would give up their lives for me, and I know that.  They will drop their work, their friends, their sanity, and unfortunately even their own health to attend doctors appointments for me. To question, to challenge, to agree, to game plan and have three different plans of attack.  They are the ones that fight behind the scenes, the ones who may not be in my body to feel the pain -- but are on the outside doing everything imaginable to stop it.  They are my everyday heroes. The women who tell me that I can do it, I can make it, I can push forward, that I am stronger than I think -- and somehow in those moments they are right.

They are the women, the caregivers who told me I could keep studying and pursuing my masters degree. They are the women who told me that a strong enough man would fall in love with me, because I am amazing.  They are the women who, with me, take nothing for granted every single day.  Because they are my silent warriors.  The ones that hardly any one of you hears or sees; however, they are everything.  I only hope and pray (or send positive vibes, whatever I do these days) that there are many cancer warriors who have such amazing caregivers, women, moms, best friends that know if I'm not ready to give up -- neither are they, and for seven years.... we have continually put one foot in front of the other, as a team.  Sometimes, I am so incredibly grateful for, every single day of my life.

These are my silent warriors. Only two out of five of them.

But they are the only reason I am alive today. And though there is nothing I can do to ever thank or repay them in the future, I can only hope, by my continued breath, sometimes that will be enough.

I just needed the world, for today, to know that.

Sending so much love to you, and your silent warriors.

xoxo,
Bekah

...and exhale.

Every time I quietly rebound, even if it is just enough to go food shopping for one day, I am always in awe of this tiny body of mine.  I'm incredibly shocked how strong the human body is in general. And I am so grateful this has been the case this week.

Just last week my kidneys were in shut down mode and I could not get out of bed, nor hardly walk to the bathroom, or have enough energy to shower.  This time last week, I couldn't move. The poison I was feeding my body was obviously a little too much.  It's amazing what a few days can do.

Yesterday and today have just been life changing.  Although I strive for so much balance in my life, this disease can make it incredibly difficult; as at times, my body feels so bi-polar.  One day I am cursing up at the heavens to allow me to have a pain free hour, literally just one hour.  Praying that I would give anything to not feel discomfort, pain, nausea, fevers, ect.  Then the next day, my legs carry me through my apartment, to whole foods, and on a walk in the park, with my normal chronic pain, but nothing compared to what I went through last week.

Today my house is now filled with a scented candle from my mother, hydrangeas, a fridge full of fresh food, and in my jewelry box lays a new beautiful, leafed-necklace I received from my partner, almost a token of victory after being released form the hospital.  One which made me cry like an infant, showing how grateful and vulnerable I am for these last forty eight hours.

My body is euphoric when it comes to this point of relief.  A point without drugs, without fevers, without hardly any medication to speak of.  And just like that, from feeling like the shit on the bottom of someone's dirty boots, my body, even if it is only for a few days, quietly, softly, rebounds.  

Normally, during these moments I call everyone I know and plan outings.  This round, I am stepping out of the ring and have decided I need to take whatever time I do have and focus on rebuilding and not setting myself up for failure. I tend to plan, only to cancel, which leaves me mentally exhausted and disappointed.  Finally, I think I am learning.

I write this post with the utmost hesitancy, since I know in a matter of days we could switch to another level of health.  If my body continues to stay strong and counts stable, then I am free until the 22nd where I will be meeting with O to discuss next steps.  But for today, the sun is shinning, I am eating, the house smells of beautiful scents, and I am prepping to cook a dinner for myself for the first time in weeks.

I've finally taken a breath, even if it is just for yesterday, today and hopefully tomorrow.  Quietly, I am cheering, as I can no longer describe the essence of how good it feels to look at that pool again, be sitting on the steps, and just breathing.  Maybe someday, I will get to the other side.

But for today, I'm just thankful to be above water and exhale. 

Here's to small victories. 

xoxo,

B.  

Drowning

I wish I could say I reached the other side of the pool.  If anything, last week I felt as though I was drowning. After a small throat infection last week, I was prescribed a slew of antibiotics and antifungals as well as an increased dose of my SAHA (chemotherapy).

It was the perfect storm.  Resulting in the inability to keep food down, loss of weight, dehydration, and intense pain and discomfort.

My counts bottomed out, my kidneys shut down, and I was admitted to the hospital for five days with a creatinine level of over two.  Basic kidney failure.

In addition, there were no beds available at the hospital when I was admitted, so I had a day and a half in hell in an NYC ER.  Pure hell.

Rich and my mother were beside me the entire time, as the ER refused to access my port, and I feared for my health in general as I was surrounded by infections, individuals vomiting, and all other forms of unsanitary levels around me.

Finally after I was given a bed in the oncology ward, we literally drowned my kidneys with fluids.  After five days, my kidneys returned to normal and I came home late Saturday.

I'm home.  I've been off SAHA and all treatments all week.

The renal failure and dehydration were due to the SAHA.   Tomorrow I go in for blood work, and pray that I have a week to recover before we discuss any more form of treatment.  Although today was an okay day -- I am so tired.

At this point I'm just straining for a breath.  Let's hope for a boring week.

B.