Thursday, February 9, 2012Tonight's picture was taken in April of 2003, at Mattie's first birthday party! We invited over family and a few friends to celebrate the day, and based on Mattie's distinct preference he had an Elmo party. Mattie loved Elmo, the red character on Sesame Street. Mattie would literally stop in his tracks whenever he heard Elmo come on TV. Mattie was glued and mesmerized by this furry red ball! I can recall this day as if it were yesterday!
Quote of the day: The most important thing in this world is to learn to give out love, and let it come in. ~ Morrie Schwartz
There are two things Mattie's cancer has taught me to do quite well. The first thing is I have become an excellent advocate. I had these skills to begin with, but through an osteosarcoma battle I have perfected them. If you need a case fought, I am your girl. Second, I have also learned that no medical doctor is going to make me feel inferior or belittled. I have had enough experience with this type to know that if I am feeling this way, to trust my instincts and push right back at the doctor.
When I visited the newest medical specialist in my life today her nurse asked me how I was able to get to see the doctor so quickly, considering I just got my ct results yesterday, after 5pm. My response was, I know the right people, and that I also have a big mouth. I said to the nurse, the harder you fight and speak up, the more likely you will get attention. There were times when Mattie was so sick, that I literally went ballistic on residents and even attending physicians. I was never cruel or out of line. On the contrary under great duress, there were times I was absolutely sharp and brilliant (and I don't use that term lightly). My role was to hold doctors accountable and God forbid if you did not treat Mattie appropriately or take our concerns seriously and treat us as part of his care team, I was going to be your worst enemy. However at the end of the day, people respected Peter and I and I can say we both did our utmost to try to save Mattie.
Naturally I take all this cancer baggage with me during any medical appointment or visit. Mattie's cancer has made me hypervigilant to things that wouldn't have bothered me in the past. I took a ct scan last Wednesday. Yesterday in the mail I received the results. The hospital I took the scan allows patients to receive the radiology report directly if you sign a paper requesting the documentation. So literally I got the report and the results before my urologist. I took the scan at one hospital, and my physician practices at a completely different hospital. When my physician learned that I got the results before her she was very upset. She called me last night at 11pm and again this morning at 7:30am. I naturally understand why she is upset, because she should have been alerted first, but at the end of the day, this is all semantics to me. I don't care who got the results, I just care that I know what they are. My doctor and I had two arguments about this point, and I told her she can go fight and argue policy with my other hospital, but right now this isn't helping me. My urologist is a competent and capable woman, but we do not always have or appreciate each other's social skills. So literally today I had to tell her to stop talking and to listen to me. Yet she continued to discuss with me why it was important for me to call her office when I have a concern rather than reach out to others. My response to her was when I received the report, I reached out to those I trust. My urologist did not care for that response, but then I had to remind her, I lost my son to cancer and for me trusting a doctor is tantamount. By the time we finished talking she understood me quite well and mobilized forces to get me the appointment today.
Today I went through more testing, some of which was down right uncomfortable. But I know this is the process one needs to follow in order to get a handle on the issue. But as I learned back in 2008, it is the waiting and wondering that is an absolute killer. Tomorrow I head to a different hospital to get a second opinion. I had all sorts of meetings today, but I cancelled every one of them. My head was just unable to concentrate, and naturally tomorrow, I too will be unable to do anything productive. Peter and I are both exhausted tonight and it is only 7:30pm, but it is my hope that soon we will have some answers and be able to determine next steps.
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