What a day...

 

SATURDAY, MARCH 8, 2014(written)

What a day...

Friday, March 6, 2014

I woke up with blood coming out of my Baha implant. Knowing I have an appointment with Dr. Barrs this morning, I got myself ready. The phone rang; Mayo Clinic told me Dr. Barrs would not be in the office today because 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, and when I arrived, they quickly took me back to the exam room, Dr. Barrs walked in, and I was surprised to see him; I asked if he was sick because I did 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 looked 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 the skin around my Baha with a scalpel. Watching it was disgusting--I had to close my eyes; for some reason, if I didn't watch what he was doing, it hurt less.
He then looked in my ear, and to my surprise, it looked sickly; it didn't feel like it looked. What was 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 correctly. 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 wander off to a better place so that I could process this--then Dr. Barrs 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 have one more surgery; I don't want more surgery, seriously? How do I go home and tell my family, friends, and co-workers? How much more of my ear can he take off? What will it 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 that maybe my migraines, slurred speech, and right-side numbness had something to do with my ear. I knew my day would get even worse before it got better.
With my mind on this, I drove down Scottsdale Road towards a hotel to meet with Dr, Northfelt, my oncologist. Earlier in the week, he called and asked me for a favor. He is giving a lecture today for 300 general family physicians about the side effects of 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 we entered a room filled with physicians. They introduced him, and he introduced me. As he began to tell the overfilled 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, and I could hear my heart beating, hoping no one else could hear it through my microphone. I was listening to him talk about me, 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 he said penetrated my mind; oh, my goodness, this happened to me? It was 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 quickly wrote notes; I thought, "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? 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 but 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 in a room full of strangers. There were two of us, Linda and I. Her diagnosis was stage 1, and for 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, four 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 every day, I seriously thought I was happy. Now today, as I sit here with all of you, I can tell you without hesitation money, cars, and big homes do not bring happiness; through my journey, I have learned who I am, how strong I am, and who is important to me, what is important to me. I can honestly say I'm the happiest I have ever been in my life right now. I've learned that all those distractions I thought were important were mere objects detouring me from 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 ended, and 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 had 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 listen to my diagnosis, notes from my surgeon, and details I never wanted to hear.

Opened and shared; he can't take it back; I heard it all. This is precisely why when Dr. Northfelt initially asked me if I wanted to know statistics, I said "NO" I didn't want to know, not because I didn't care about other people. Still, I needed to focus on myself and what I could do to kill the villain in ME; I promised myself a long time ago that I would have no regrets and do precisely what I was told to do. 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, 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 and hugged me; I told him how much I loved and appreciated all he had 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, 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 higher ground today.