Lost and Found

I have been so lost for three months... I have been caught up in a world filled with doctors and more doctors, hospitals and needles, injections and medicine, diagnosis and prognosis. All creating a world of emotional turmoil and tears. I have been lost but now I am found.

Starting in October, 2009 , I have been in a position of learning about the health care system from the inside. I have been hospitalized twice; I am participating in a Protocol Stage I treatment for cancer; I have almost weekly appointments with doctors. I am now on a food tube and cannot eat or drink through my mouth because I have a determined infection; and on October 31, 2009, yes, on Halloween, I fractured my hip as I was walking...just walking. I have been on crutches since then...and will move on to a cane in March.

Throughout all of this I have seen the best in so many people. I have had the best nurses at MSKCC in NY. I have doctors now who care for me - me the person, me the human being. I fired a doctor. Does that amaze you? Well, everyone told me that I cannot fire a doctor since I am not his boss. But my logic was I fired him by throwing him off my health team and getting another doctor to take me on as his patient. If I am to survive I need the best and the kindest medical people taking care of me and now I can proudly say that my new medical team is made up of those people. Remember always that we are entitled to be treated skillfully and kindly!

I have found my friends interesting during this period...they came in close when they could and retreated when their own lives and fears demanded that they do this. My therapist, what a wonderful person and I love her dearly, kept me sane and moving forward, step by step. When I tripped and fell she reached out to me and helped me up with her words so that I could continue my journey.

She told me that sometimes people have to back away when people are sick. I had a hard time accepting that and I kept saying over and over again, "I just don't get it. I just don't get it." It was like a litany for me. I cried...I screamed...I begged... My therapist wrote to me on the computer and called me since I was not able to make my sessions. After asking her why my friends had all seemed to disappear I finally got bored with the question and since I trust her, I decided to accept what she had said and I moved off that question and moved on! It had been holding me back. She encouraged me to do things and to try to find ways to be happy and as hard as it was I did find those things ...slowly at first, but eventually they started to fall into my life.

My partner almost melted from the heat at home. My partner tried her best but had so much pressure placed on her by the situation and by me. I couldn't cope alone and I felt I was sinking fast...Too many things happening so quickly. I had a major infection in my mouth that required me to be hospitalized for 12 days; I needed to use a food tube and not eat; I had to infuse myself through a mediport with antibiotics; I fractured my hip; I couldn't drive; I went back into the hospital with a serious blood infection and almost died. There is so much more but to save your sanity and mine I will end the list here.

I had to update you on where I have been and why I hadn't been writing...but I also want you to know that during the last three months I had great moments.

I had joined Soldier's Angels in 2008 and I wrote to three soldiers stationed in Iraq and Afghanistan and sent packages. Giving to them kept me sane and helped to give my life a purpose. I also got involved with sending post cards and holiday cards to our soldiers. I sent packages to the wounded and I wrote to the President Obama about getting our men and women home. Involving myself in other causes gave my life a purpose and got me to stop, even if it were for a while, thinking about me and my health problems.

I am glad to be back and I have so much to tell you about and so many things to share with you.

Mariposa, mariposa you live your life with such abandon, knowing no fear
Mariposa, mariposa small at birth but large,colorful wings do appear
You enter our lives, as we watch you fly
You move from flower to flower, our eyes follow as you go by

Mariposa, mariposa make room for me
Teach me the gifts of nature that are yours by birth
Show me how to accept without fear what my life cycle is!
Mariposa, mariposa land on my hand, gentle one, I hold you safely.

I write about butterflies because I feel some kind of connection with them. Once when I was volunteering at MSKCC I was asked to speak to a man of 41 years of age who had terminal cancer. He could not speak but he could write and then I answered him. After asking me a few questions, he wrote: "I am afraid to die." Please accept this as truth... I paused before I responded and during that pause I saw butterflies flying around both of us. So my answer to him was that all things have a natural life cycle and just like butterflies we are born, we live and then our life cycle ends. He felt comforted by that and he put his head in my arms and sobbed and wrote: " I know what you mean." There is no answer to why some of us live longer than others. There are no words that can explain why someone is going to die. Some of us have faith and hope. Others believe what they do... I just believe in the butterfly and that I will die when I have learned all that I was sent to learn and I hopefully will be content.

God bless you all! AMF