We were supposed to meet with the oncologist in Batavia today to get my oncotype test results on all 5 of my tumors. Yeah, no. She called this morning and relayed that the samples were never sent out (they have to go to a lab in California, thus the results taking 2 weeks) and that she had changed it so she was only having one tumor tested instead of all five. This is the test that will dictate the need for chemo.
We are in a serious time crunch on this. Chemo is supposed to start on March 16th. It has to start 8 weeks post-surgery. Prior to chemo, I will need surgery to have a port placed in my chest. I need to have my heart checked at the cardiologist. I also wanted a second opinion from a larger cancer institution so that I know that chemo is the right thing to do. Chemo is a lot to put myself through if there is little benefit - a huge time commitment and a lot of side effects. Dave questions me with this: If you waste over a year of your life doing chemo and the cancer returns......you've wasted a good year of your life. If you don't do chemo and the cancer returns, you don't know if it's from not doing chemo and you haven't wasted a year of your life. Which is worse? I really don't want to be chemo sick at any point, and I continually worry about missing out on a year of the boys' lives. And then that makes me think, what if my life ends when they are in 2nd grade.....I'm missing it all. Morbid. Ugh.
Soooo, back to the oncologist in Batavia. I got a voice message to call her this morning. I immediately handed the phone over to Dave. I knew they were calling because they didn't have the results. I can not take these calls. Within minutes, he was yelling at the doctor in frustration. Brutal. I hate that to get anything done, we have to check and check and check to make sure everyone is doing their JOB.
We are not sure why the doctor decided not to send all 5 tumors. We have no idea why the testing wasn't started. Dave started calling around to the lab and insurance agency. Turns out that our insurance DOES cover getting all 5 tumors tested! And it didn't take him long to figure this out. Why couldn't the doctor's office do this?
We were scheduled to be at Sloan Kettering for the 2nd opinion on Monday. That had to be cancelled. We also have to round up all the reports and biopsies and make sure that they get held. Our flights were over $500 each. I had babysitting all set up for the kids. The school put in for my sub.
Dave has been on the phone all day trying to make sure the California lab gets my samples TODAY. One arrived. Four more are being overnighted. It takes 2 weeks to process. We rescheduled Sloan Kettering for March 9th. I rescheduled child care. Dave will reschedule the flights. I will reschedule my sub.
In the meantime......because NOTHING can go well........I faxed my doctor note to my school on FEBRUARY 14th with doctor's recommendation that I start back the week of Feb 27th half days to build my stamina. Then proceed onto full days. TODAY, over a week later, I finally get a response saying that the superintendent will not let me come back half days. She considers this a restriction and I am not allowed back in school with a restriction. She is not going to allow me to gradually re-build my stamina and would prefer that I come back full days cold turkey. I have had to call the doctor to get them to rewrite and fax over a note saying I can go return full days on the 27th. This amazes me. With all the people who have been there for me and helped me in so many ways, I cannot get an easy accommodation from the school to start with half days? It's ridiculous, because if I'm tired, I can leave at mid-day and take a half a sick day......exactly what I would have just had set up. SMH. And, because this is what we have to do with everything lately, I will have to call the doctor back and make sure the fax was sent and contact the school to make sure it was received. I'm beat down today. With all of it.
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