Initial Diagnois

It’s been a long 6 weeks and it is about to be even longer. Yet, at the same time I am full of hope. I understand that the journey will be long and I will not be the same person at the end--I will be better and stronger. I am not sure if this entry will ever make it anywhere. I just think that it is important for me to capture my thoughts and feelings to be able to reflect on them. Life changes so fast and it is for the better this way.

I had my first meeting with the oncologist on Friday. My first thought: I am 35 years old, eat organic foods and love to work out – alright, I enjoy my wine as well--how can this be happening to me? But it is real so I have to move on and accept it. When the oncologist tells me that he thinks I have retroperitoneal sarcoma, I look at him and tell him that it is impossible since I can’t even pronounce the words. The scary part is that the diagnosis will not be finalized until the surgery as the only way to confirm it is for them to open me up from my chest through my abdomen so that my internal organs can be examined. There is a slight chance that this could be benign but I can tell from looking at the doctor’s face that this is not likely and I realize that I am lucky because I am with a doctor who has seen and treated the disease, which is something that most individuals who go through this don’t have the luxury of. When Christopher and I leave the office there are more questions than answers. I have to be patient and I know that the answers will come to me. So the journey begins.

My surgery is currently scheduled for March 26. This is a blessing because my friend’s Therese’s wedding is on March 28 and I am in the wedding. So now I have the chance to still be there for Therese if I can coordinate the team of doctors to schedule the surgery for the following week. Several days later I learn this will be a bigger challenge than I anticipated, but I intend to make it happen.

I spend most of the day talking to doctor’s offices and coordinating schedules. I decided to seek the opinion of another sarcoma specialist (I am so thankful that I live in New York!) – this means that I have to gather my final reports for this doctor so that his nurse can review the information and decide if this is a case that the doctor would like to have in his portfolio. I also need to see a fertility specialist to understand what the impacts might be further down the line since I will be receiving radiation and there is a very, very small chance that they might have to remove my ovaries. Next is the appointment with the radiologist and a pre-operation consultation with my oncologist. I guess I will get my insurance worth this year! I quickly realize today that I will need to make sure that I have a little fun built in each day as all these discussions with doctors are draining and the only thing that I can manage at 5 pm today is to get into bed!