Hear me Roar.

Throughout this month I've been holding my breath thinking "This will pass... it will pass."  From before the holidays with the shingles, to a recent boiley-chest rash with absolutely zero cause or reasoning to my most recent set-back at New York Presbyterian for six days.  I'm still waiting for it to pass.

I also attempt to set small goals for myself every month: cooking a new meal, buying something new/decorating the apartment, applying for jobs, going to the gym 4-5 times a week, attempting to find anew yoga studio.  It didn't feel like there was that much on my plate that month. But my body was telling me otherwise.

Revlimid has been a g-dsend with it's nightly dosing (i just pop one pill a night!), zero infusions, and hardly any side effects except my immune system going bizerk. Literally. It's turning things on that it never has had on before, and luckily turning off DNA switches (the cancer) as well.  But in the interim, it's messing with me.  Completely. And I am one frustrated pup.

Only two weeks ago I started having a head cold that somehow broke into a staff infection, bacteria infection, and another case of scalp shingles.  Even I didn't want to be around myself.  My counts aren't bad but they aren't normal.  The only reasoning I am given when asking why I've had three separate skin-rash-breakouts within six weeks is, "The Revlimid is changing your immune system." Do I want this? Of course, but do I want to be isolated for weeks at a time - HELL NO.  Cancer sucks, no matter what way you look at it.  But I get really heated when I'm a)not allowed to venture outside my apartment b)not allowed to work out or go to yoga and C) not allowed to eat the things I crave.

For the third time in six weeks -- I'm back at this place. Being bedridden and isolated for six days is my worst nightmare, mostly because I become immobile, and I lose everything I work for everyday to keep my body healthy.  My muscle mass, my balance, my eating habits.  I lost five pounds in the hospital, and now am huffing and puffing just walking around the apartment.  So, I am absolutely livid. The I am Bekah Hear ME ROAR... kind of livid.

Luckily, the infections are healing and the shingles have started going away -- but a part of me is waiting for the other shoe to drop.  Because, it keeps on happening this month... We meet back with O and his team next week to discuss if and how we can prevent ANY of this from happening.  The fact that I've never had shingles in my life, and now I've had it twice within a month is a big frightening.  The fact that my face swelled up like a balloon and I was in so much pain, I literally thought the swelling was going to break my nose is even scarier.

I haven't truly been angry at this disease in a while, and sometimes its not worth the energy -- but in this instance its everything I need to start figuring out how to live with this drug, still get the things I need and use the anger as motivation to put the rest of this stuff in check.  I'll take all of it, and once again for the 35285437954 time use it when I go into physical therapy to gain strength back in my legs and find balance  in my ankles and hopefully return to the gym, and eventually go back to some of those monthly goals.  Each set back is traumatic, especially this one.  I've spent two days crying, now it's time to get back to work.

I hate being angry, but if it's there, I'll use it...


- b.