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.