Tuesday, November 11, 2014

Done with 2 of my chemo pills!

I have been on Maintenance chemo since October 2013.  What's maintenance chemo?  Well, for me, with my specific leukemia, I take a variety of pills everyday, including the big three: mercaptapurine, methotrexate, and ATRA (tretenoin).  I also take a few other things, but those are to combat some of the side effects of the big three. 
Yesterday, I was told by one of my NPs that I could stop the methotrexate and mercap. I also will stop my ATRA pills on Sunday, which is awesome!  I am so happy to get my body back into shape. 
I say back into shape for a few reasons.  Its very hard to lose weight on these meds.  I have steadily gained weight during this past year, and now its almost over.  I've gone to a podiatrist to treat plantar fasciitis and overpronation due to rapid weight gain/loss and balance issues from being neutropenic so many times over the past 2 years.  I wake up nauseated every morning around 4 am.  Some days I am not hungry at all and other days I can't stop eating.  Oh, and the headaches are awful.   So, yes, I can't wait to get my body back.  I want my immune system and my blood to normalize.  I want my weight to normalize.  I want my muscles to come back full force (just in time for the apocalypse).

Its very exciting.

And in one week, I will be at the hospital getting yet another bone marrow biopsy.  If this is clean, I will be in survivorship officially!

Sunday, November 2, 2014

Research IT!

Yes, the IT is all caps-- if you have a problem, stop reading right now.  I use all caps sometimes.

Lol, that was a remark geared to someone that thought a comment I left on a support group was rude because I capped a few words, not even in order.  I put all caps on a few words (separated by other words) in a comment in regards to chemotherapy.  I was trying to highlight some terminology, and it was taken as I was being rude and "yelling".  I don't yell in all caps. 

I elongate when I really am mad...UUUGGGHHHH!!! (and use exclamation marks!)

I guess this rant is more about the importance of research.  Do you have an illness, like cancer?  Maybe even leukemia or APL?  Here's the thing:  Please, for the love of yourself and your life, please oh please research your illness or disease.

Its one thing to join a support group on facebook or on a cancer website, but its another to take what another patient or family member to another patient says as truth.  And, from what university did they get their medical degree from?  Exactly. 

I've seen people asking a support group what C-diff is.  ASK your DOCTOR!  (Yep, did it on purpose there.)  In case you don't know what C-diff is, you have not experienced the outbreak that is the most disgusting side effect to chemo or suppressed immune systems have the pleasure and the curse to have.  Yes, look it up.  Google and Wikipedia are great.

When someone is told they have cancer...many thoughts go through their heads.  For me, I was told in a very cold way and then rushed in an ambulance to another hospital.  I was lucky enough to have a nurse explain to me what was happening.  The following day, I met lots of doctors.  I was bombarded with tons of information and questions and it was very dizzying.  By the time my boyfriend brought me my laptop, I had printouts, but I also still wanted to look things up on the interweb myself.  I wanted to see other stories, hope for happy endings, read about other experiences like what I was about to embark.  I wanted answers and confirmations. 

Guess what?  I got them.  I agreed with everything my doctors told me.  I questioned (and still ask questions) when I don't understand something fully.  Maybe my inner nerd that loves science and biology really got a chance to shine through and help ease my nerves, but honestly, I can't imagine not asking questions and just saying OKAY (totally not yelling).  I also can't imagine asking someone who I don't even know what they do for a living what C. diff is--- that's what the hospital staff is for.  That's what your doctor is for.  And, when you have a fever and don't feel well, well they do want to know.  Do your meds make you puke?  Tell them.  Don't tell another patient...they can't do anything about that.  Tell the magicians who are trying to save your life, because the price of magic is plenty, and some of it isn't necessary.  Does Compazine make you feel funny?  Tell your oncologist.  They can easily write a script for Zofran if you aren't allergic. 

Don't rely on others for medical advice-- rely on them for moral support. 

I know its been awhile since I posted.  I should give an update, but I really needed to get this out. 
Thank you.