Marrow is the word for the week.

A lot of people have been asking what has transpired in the last few weeks.  Unfortunately I don't have too much motivation to write or too much good news, just because we are in such a limbo and I despise writing about 'in between' periods where we do not have any answers.

Once again this has been a rather rough month (an understatement).  And although everything appears normal between my thyroid, IGG, and so many other outside tests;  my blood counts are still not rebounding. In fact, my HGB (Hemoglobin) in the last two weeks has slowly decreased (8.5 to 8.3) almost in need of a blood transfusion. 

Yesterday my partner and I ventured into the city so I could get a CBC (blood test).  This was due to the fact that every single hospital in NJ will NOT access my port for a blood draw with an out of state physician's script.  The only way around this would be to relinquish my care with Dr. O and his team and start with an oncologist who has never even seen a refractory HLer before.  Lovely.  So for now, Rich and I hop on a bus/train, and head into the city for a blood test.  Luckily though, it has unfolded this way, especially this week.  When I came and met with my NP, my heart rate was 130, and I did not even register on the blood pressure machine.  Immediately we ordered two liters of fluids, and ran my blood tests that now cost $14 dollars a pop in travel.  I love New Jersey ( sarcasm;) ).  

Unfortunately the blood tests did not reveal what we hoped. Everything is slowly moving down that should be moving up, and vice versa. This also means, we're not quite sure what we are dealing with.  Cancer is one thing, but I have never had difficulty with my blood counts over several months.  From the hospitalization with tons of antibiotics, to a question of possible bone marrow failure (my greatest and darkest fear even above cancer), to hemolytic anemia (Dr. O's hunch).  We don't really know what we're dealing with. 

I've currently been off treatment for over a month now.  And with an attempt at a getaway in Florida for my twenty-ninth birthday, we are expediting some things for next week.  This includes a bone marrow biopsy on Monday to see what the heck is going on in my marrow to cause such sluggish blood counts, and a hopeful transfusion since I am running on fumes.  If you believe in positive vibes of any kind I ask you (and I don't do this very often, but I do believe in positive energy), I ask you to send some my way that this has nothing to do with bone marrow failure.  Anything else, I know it will be some form of treatment or care and it will be a somewhat easy fix; however, bone marrow failure is another level of illness that no one in this ball game is ready for.  So, I would really appreciate your thoughts.  Unfortunately this also means I need to put a hold on Physical Therapy, Yoga, and any intense activities just to be cautious.   

In other news, I am trying to suck all the marrow out of life by spending my good moments with my favorite people and continue to be grateful for what I can do despite these small hiccups.  Just a bit ironic since it's my bone marrow that are these hiccups, right? ;)  

So despite all of this I've focused on the glimmers of light around me.  This month I've had more time to spend with my grandmother who recently moved to Montclair, NJ.  Was sent a beautiful and amazing package (with a frozen pizza and desert!) by one of my favorite caregivers and super-mom, Carrie.  Who is now sick with the flu herself (so send some good energy her way too!).  I was invited by my dear friend Manny to go see Cooper Anderson Live at the end of next week and am SO pumped for this.

Rich and I squeezed in two solid days in NYC and ate like queens and kings since we had the best restaurant recommendations in the city from RPS.  We also were fortunate enough to see TWO musicals on broadway this week (I swear, broadway is one of the few places I just forget everything and it's such a breath of fresh air).  During my doctor's visit yesterday I was able to meet, chat and laugh with Princeton's power-couple Alex and Brannan.  And today, one of Rich's oldest friends came into Montclair to spend the afternoon with us so we could finally eat at one of our local restaurants.  Just writing this warms my heart, knowing how full my life really is in so many ways...

Brilliant details at dinner...

One curly-haired girl...

Wicked's Stage (now one of my all time favorite musicals)

Just us goofing around in NYC before Broadway...

Even with the unknown, the fatigue, exhaustion, lightheadedness, weakness, and dropping counts. I have pushed my body a bit harder so I can hold on to these moments, because they breathe life back into me and nurture me, unlike any medication or treatment could.  And I'm willing to push for that. 

Bone marrow biopsy on Monday, hopeful results early next week. 

Sending Love and Gentle Hugs,

B.