Thursday, February 16, 2012

Thursday, February 16, 2012

Tonight's picture was taken when Mattie was a month old, on May 4, 2002. Peter's family came from Boston to visit with Mattie and that afternoon we all went out for ice cream. On our journey out, Peter's parents bought Mattie this cute bunny. A bunny which I still have. Mattie was fascinated by that bunny and at the time being a naive mom and person, I thought life was challenging with a newborn. The irony is I had no idea how much harder life was going to get. I suppose thank goodness none of us have a crystal ball to rely upon, because if we did, there are some days we just may not get out of bed knowing what lies ahead.


Quote of the day: A good head and good heart are always a formidable combination. ~ Nelson Mandela


It has been non-stop doctors, testing, and stress for the last two weeks. We are living at such a heightened level of tenseness and anxiety that I am back to not sleeping or eating. A feeling I recall all too well when Mattie was ill. I went back to Georgetown today to meet with my oncologist there. As soon as I walked into the Lombardi Clinic there awaiting me was our friend Tim. Tim is a hospital administrator who we have gotten to know quite well since Mattie's death. Tim is a big Mattie Miracle supporter and has become a dear friend of ours. He was sitting in clinic awaiting my arrival because he wanted to lend support and also to let others in the clinic know that he considers us special people. In addition to Tim, Linda (Mattie's childlife specialist) met us in clinic. Linda was working hard today to get all my scans on a disc for me to bring to my third doctor on Tuesday.

If you want to know why I love and support Georgetown University, it is because of people like Linda and Tim. Georgetown has become my medical home, and though I do not know the oncologist there well, I do know the support staff has become like family. My appointment today with the doctor was interesting. I characterize it as interesting because in my perspective he was humble. Humble because he knows he doesn't know the answer to my problem any more than I do. I am no oncologist, but I know enough about cancer first hand to know when push comes to shove no scan or doctor can predict what will happen to me. I am sure for some of my readers all of this may come as either a shock or a surprise. We want to strongly believe that if we see a doctor, he/she will have a solution to our problem! But modern medicine in so many ways is NOT modern at all. It doesn't have all the answers and as even today's doctor admitted my situation is rare. He told me if doctors sit me down and say they have seen lots of people like me, then I shouldn't believe them. He said he wished he had a crystal ball and could tell us more about my mass and its trajectory, but he can't. It is with that, that I said I know this all too well. Medicine doesn't have all the answers because if it did Mattie would still be alive today. He got what I was saying, and I felt we understood each other quite well.

Though I did not feel this way last week, today I felt as if the doctor wanted to accommodate my concerns and desires and began including me as part of the care team. An approach that works best for a person like myself. So we are working on a strategy for the next month that involves additional scanning and the potential to try to do a biopsy. Because of the mass location, this may not be possible, but he is consulting with several radiologists on this. Needless to say, today was just a very emotional day back at Georgetown. I cried with the doctor, I cried in the clinic, I cried with the man taking my blood, and then I cried for two hours after I left Georgetown. While I was getting my blood drawn, I was hysterical and there was an older woman sitting next to me getting her blood taken as well. She told me she has leukemia and that I chose the best facility in Washington. With that I told her I lost my son to cancer at Georgetown and know the hospital all too well. She was down right shocked to hear me say this and responded by saying that I have experienced "the worst kind of loss."

Unlike with Mattie, I do not know what I have. I may not have cancer at all, but one thing is for certain I have two choices, one is to get the entire mass removed, or live with periodic scans for the rest of my life (assuming that the mass doesn't change in size, because if it changes at all, then the decision to have surgery will be made for me). I am worn out tonight and somehow have to get a drip on this reality before the stress of this situation makes me completely sick.