Saturday, March 8, 2014

What a day....

Friday March 6th, 2014

I woke up with blood coming out of my baha implant.  Knowing I have an appointment this morning with Dr. Barr's I got myself ready to go.  The phone rang, it was Mayo Clinic telling me Dr. Barr's was not going to be in the office today he was sick.  I advised them of my bleeding situation,  I'm not sure they knew what to say, she hung up and within a few minutes called back and told me I would be seeing the PA or resident today--I got a little crabby and said "no I will not, I will see an attending or I will not be coming at all"  These issues with my ear are getting on my nerves, I want so badly to get past this.  I made my way to Mayo, when I arrived they quickly took me back to an exam room, Dr. Barr's walked in, and I was surprised to see him, I asked if he was sick because I do not want to be examined unless he has a mask on--He told me he was in a 3rd world country recently doing some pro-bono surgeries and thinks he may have picked something up but not to worry there was only a 50/50 chance I would catch it.
He first took a look at the screw in the back of my head, turning my face towards the TV I could see everything on the big screen--he began to scrape with a scalpel the skin around my baha, watching it was disgusting--I had to close my eyes, for some reason if I don't watch what he is doing it hurts less.
He then looked in my ear, and to my surprise it looked sickly, it doesn't feel like it looks, what is going on? He tried to stick his vacuum down the ear canal and suck out what he could, but he didn't get too far.  He went and got his nurse Kathleen, she took a look and they both agreed, I will be having more surgery--the ear canal is virtually closed so tight he cannot see into the ear drum, but knows it is not healing properly.  The baha is not connecting with the bone like it should, so with both of those problems more surgery is necessary--They both stepped out of the room, and as I stared at the carpet I couldn't help but cry--I just sat there and cried--feeling vulnerable and alone I cried, then quickly wiped those tears away as I heard them coming back in.  I put a smile on my face, bit my tongue and listened partially to what they were telling me, but not wanting to hear what they were telling me--I let my mind wonder off to a better place so that I could process this--then Dr. Barr's said "OK, so you understand right?" "Um, yeah I think so, I come back next week right?" "yes, scheduling will call you"
I left there thinking, "I cannot take one more surgery, I don't want more surgery, seriously? how do I go home and tell my family, my friends and co-workers. how much more of my ear can he take off? what is it going to do if I don't have the surgery and get a 2nd opinion"  So many thoughts running through my head--I feel a migraine coming on--and I have not had one since my surgery, I just told Marian Priday, maybe my migraines,  slurred speech,  and right side numbness had something to do with my ear.  Little did I know my day was about to get even worse, before it got better.
With my mind on this  I drove down Scottsdale road towards a Hotel to meet up with Dr, Northfelt,  my oncologist.  Earlier in the week he called me and asked me for a favor, he is giving a lecture today for 300 general family physicians, about side effects from chemo and radiation.  He asked me to speak about side effects I have personally had.  When I drove up to the entrance of the Hotel he was standing there waiting for me.  I tried to compose myself before getting out of the car, I need to focus on what I'm here for....actually what am I here for?

Love my Doctors-

 Dr. Northfelt hugged me and into a room filled with physicians we went, they introduced him, and he introduced me.  As he began to tell the over filled room of doctors about my diagnosis, I was not prepared to hear what he was saying.  I had an out of body moment as I listened to him announce my stage 3 diagnosis, I could feel an anxiety attack coming on, I could hear my heart beating and hoping no one else could hear it through my microphone.  I was listening to him talk about me, about my life, my breasts, my everything, well at least everything medical that has happened over the last 4 years.  I felt like I was in a tunnel, every word of what he said penetrated deeper into my mind, oh my goodness this happened to me?  It's difficult for me to express the rawness I felt hearing him speak, it was like I wasn't in the room.  I watched as physicians were quickly writing down notes, I thought to myself "what the heck are they writing? do they not understand, do they not see me, am I just a number to them, or a statistic?" "do they not know I have a family? that when I leave here today my name is Monya, I have a husband named Eric, children with names, grandchildren, friends....I'm not a number I'm a person with real feelings"
Now it was my turn, Dr. Northfelt began asking me questions and I was to answer them openly and honestly to a room full of strangers. There were two of us, Linda and I.  Her diagnosis was stage 1, and every question Dr. Northfelt asked she and I had complete opposite answers.
We talked about neuropathy, bone pain, body image and sex.  Then it was question and answer time, as they collected the questions, now I knew what they were all writing.  One of the final questions I was asked was "how has your quality of life changed?" this is my answer to that question with a quiver on my lips and a tear in my eye.  "Pre diagnosis, I thought I was happy, I was living the dream, 4 children, blessed with a husband who worked hard so I could stay home with the children, I had a nice home, car, able to exercise everyday, I seriously thought I was happy. Now today as I sit here with all of you I can tell you without hesitation, money, cars, big homes do not bring happiness, through my journey I have learned who I am, how strong I am, who is important to me, what is important to me, and I can honestly say  I'm the happiest I have ever been in my life right now, I've learned that all of those distractions I thought were so important were mere objects detouring me from the real happiness, all that really matters to me is my family and my doctors, I love them more deeply and purely than I ever thought I could, life is a precious gift that so many take for granted,  Dr. Northfelt promised me he would be with me through every step of my journey, and I believe him" with that being said the lecture came to an end, everyone stood and clapped, that surprised me, is this normal, do they stand and clap at these things?  Several doctors came up to ask me questions, one of them walked up to me and asked me if I have ever tried any natural paths, my first reaction was, "who is this kid?" Seriously he looked like he was 16 years old, I'm assuming just out of school and starting his practice eager to learn.
I'm not sure I said anything  today to help anyone  in that room, however, it did help me listening to my diagnosis, notes from my surgeon and details that I never wanted to hear were exposed. opened up and shared, he can't take it back,  I heard it all.  This is exactly why when Dr. Northfelt asked me in the very beginning if I wanted to know statistics I said "NO" I didn't want to know not because I didn't care about other people, but I needed to focus on myself, what I could do to kill the villain in ME, I promised myself along time ago I would have no regrets, I would do exactly what I was told to do and I have, I feel good about that, I'm firm in my knowledge of what I needed to know, and what I didn't want to know--but now, now I know, now I've heard it, scary? Not really, just an uneasy feeling hearing it all.
Dr. Northfelt walked me out to my car, gave me a hug, I told him how much I love and appreciate all he has done for me.  He thanked me for helping his lecture not be so boring,  as I drove off I couldn't help but be emotional, a few tears streamed down my cheek and onto my shirt, I looked up and without any rain in sight, I saw a beautiful rainbow, a sweet tender mercy from the Lord, that moment gave me some peace and I smiled.  HE really does know what I need, and when I need it.  Little tender mercies are recognized, thank you for lifting me to a higher ground today.