Day 100 Results!

My Day 100 results are back and everything is great!  My marrow is now 100% my brothers and there doesn't seem to be any complications.  My risk of GVHD is now decreased.  My counts were about the same as last week, which means they have stabilized.  The doctors are going to monitor me weekly to see if they stay steady, if not, and if they decline, they are going to do more tests.  My liver function tests are much better too!  They took me off of my antibiotic last week and that seems to have really helped with the liver function tests.  My kidney tests are good too.  My iron is still really high (from all the red blood cell transfusions prior to the transplant).  I am going to have to wait 3-6 more months before we can do anything about that.  The only way to get rid of the extra iron is to do phlebotomies (remove blood). 

Though this is all great news, but I felt the best about telling the doctor how I felt.  I asked Dr. McGuirk (the main doctor that I have been seeing) last week to do me a favor and to please not have Dr. Ganguly review my Day 100 results with me today.  First thing this morning, who walks in to my room, but Dr. Ganguly.  Man how I was angry!  I dislike this doctor because he talks "at you" instead of to you, he replies to questions with "because I am the doctor", his bedside manner is awful, he treats you like you are part of an assembly line, etc.  I could go on forever about how I dislike him, including how he wrote in his dictation on my very first visit that he did a complete physical exam, when he didn't.  So today I asked him to stop talking down to me an that I wasn't stupid.  He denied that he was doing it, so when he continued to do it, I pointed it out to him.  Of course he didn't like it, but he needed to know.  My mother-in-law said I was lucky he didn't fire me.  I responded to this statement with, "He's lucky I haven't fired him!"  So after my mother-in-law told me this, I thought it would be good to talk to my therapist about it.  She was proud of me on every level.  She congratulated me for being my own self advocate.

To everyone out there that may not know me or may know me very well, my thinking about doctors is very different than most.  To me, doctors are no better than you or me.  They are not smarter than you or me.  They may be smarter than you or me when it comes to medicine, but everyone has their strengths, who's to say a doctor is smarter than an architect.  When I was a Clinical Research Associate, my job was to go to doctors offices and tell them what they were doing wrong.  I usually never had a problem with that.  Now the tables have turned and when it comes to my own doctors, I have trouble telling them how I feel about them, and trust me, I do NOT ever have a problem telling people what I think of them.  It is very important when you have a serious illness like this, for your doctor to know you, to know you personally, as well as medically.  My doctors at KU have NEVER taken the time to get to know me.  They don't understand my situation, they don't know what I am dealing with emotionally, mentally or physically.  Of course, there are always common denominators with all patients, but each person is an individual, with individual stories.  How can my doctors, who are all male, understand what it is like to be a new mother and living away from her husband and having limited help at home with the baby and dealing with post-partum depression.  Maybe if they would've taken the time to ask, they would have a better understanding of why I have an emotional outburst when I don't feel like anyone is listening to me.  So please, be your own self advocate.  It is ok to question your doctor and he/she should not make you feel bad about this.  You have the right to have your questions answered.  You have the right to understand why they are doing what they are doing.  I had a question while I was in the hospital about why they were giving me Methotrexate (a chemo drug) and what side effects I could expect.  Dr. McGuirk's answer was, "Its in the informed consent, we already went through this with you when you signed the consent (2 weeks prior).  If you have questions, you should read your consent form. You can expect things to get worse before they get better."  I was just absolutely LIVID about this!  I know that it is the doctors responsibility to answer these questions.  I was half out of it, if not completely sometimes, and it was MY responsibility to look something up, when he is suppose to know this stuff inside and out?!  And then he was surprised when I told him to get the hell out of my room.  What does he expect?!  And by the way, things didn't get worse before they got better.  So I may not be an expert on being a self advocate, but I try at every appointment to make sure that I understand completely and fully the reason why they are doing what they are doing.

Alright, enough about that.  I got cleared to go to my parents house, so I am going this weekend.  I also got permission to go back to Hawaii to visit my husband, though, I probably won't go because he is coming here next week for Thanksgiving!  I also got the ok to eat Chipotle, my favorite burrito place!  So that's what I had for lunch.  Overall, this day was awesome!  I feel like I am on top of the world and that I have kicked this aplastic anemia's butt!