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. 

Caregiver Group

If you are a Caregiver of someone who has Hodgkin's Lymphoma (especially relapsed or refractory HL) I highly encourage you to join this new start up group.  I, and the HL community found that there is a huge lack of caregiver support in the cancer world, and we want to make sure all of you have it!

Please come and join, ask questions, and know you're not alone.

Click here to join.

Sending Love,

B.

A Plan in Place

Since the not so fun six day hospitalization at New York Presbyterian...

I just haven't felt that 'well.' I've been giving myself nueprogen shots every night for five nights to boost up my blood count since I was neutropenic when I left the hospital.  And since leaving I've just felt incredibly worn down (says the woman who had three brutal infections and hardly any food at the hospital).  I know my body should be feeling worn down, but it just didn't feel as if it was rebounding.  So we made a plan to have a check-in with Dr. O this week.

My lovely entourage (the moms and my other half) ventured all together to visit with my amazing medical team to figure out what our next set of steps were.  I have been dropping weight, off the Revlimid since the hospitalization, and we needed some direction. 

I've unfortunately lost a total of 10 lbs since my hospitalization.  This is from the unfortunate and awful hospital food that I honestly just did not eat, a combination of all the IV antibiotics making me naseaus, and just focusing on the infections for so long.  Due to this major lack of muscle and body fat (I'm down to 115 lbs, normal weight is 125).  Dr. O has prescribed marisol and has ordered me to eat as much as my body can.  I need nutrients and a strong body to keep myself moving, and right now we're in a holding pattern until I get this weight back on.  Luckily Rich has been making milkshakes for me non stop and cooking tons and tons of food.  I just wish my stomach would want some of it -- but we're doing the best we can.  

Dr. O also wanted to test a few other blood levels between my thyroid, and immunoglobulins.  Immunoglobulins (say that ten times fast) measures known antibodies in your blood.  Antibodies are substances made by the body's immune system in response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to the foreign substances so the immune system can destroy them.  This will help figure out some keys into why I might be having so many infections -- due to my IGG count.  If we can figure out a specific reason why my immune system is floundering than we have the ability to correct it through supplementational therapy.  If not -- if it is a general immune issue, we won't have the same luck and therefore might not be able to continue the drug.  

Right now we are taking it a step at a time.  In the next two weeks, we will follow my blood counts, including my IGG, may unfortunately have to have a bone marrow biopsy in there somewhere (ouch!), and then we will meet again to pow wow and see our findings.  Dr. O is hopeful that after the weight is back on and these blood tests reveal some answers that we should hopefully be able to begin the drug again and let it get back killing this cancer.  

For now though I have only been ordered to take my antibiotics from all of my past three infections, eat like it's my job, rest, and begin physical therapy again to gain back strength. A plan in finally back in place, which puts my mind and body at ease.  So here's to getting back on track, slowly -- but surely.  

Sending love,

B.