Well, the week has finally arrived! Another chapter closing in my life. This is my last week employed with Porsche Financial Services. You have heard it before, but I could not ask for a better group of people to work with / for. I knew this before I was ill, but going through a life changing event solidified what a great company it is. I do not think I made the wrong decision as the timing was not right for us to up-root to Atlanta GA, but I am a mess every time I think of not seeing some of these people on a daily basis. But as they say "as one door closes another opens".
This past month has been a bit crazy, confusing, anxious, irritating, etc. Most know I traveled to New York 2 weeks ago to meet with Dr. Vahdat at the Weill Cornell breast center. I stumbled across this trial towards the end of April and began speaking with Dr. Vahdat, the trial nurse and the office manager. It took some time for us to connect, but we did and I went through all the scans required to qualify me for the trial. When finding out my scans were clean, I sent everything to them and that is where it should have been my first sign that this was not going smoothly. I sent my documents and it took a week after that for me to finally get someone on the phone. At that point the trial nurse told me that I needed to consent to the trial within 4 weeks of my last scans. (That meant by 6/7/13) I was one week down already and you might as well say 2 because the following week that I was talking to her, I had plans to travel to Atlanta for work. No need to panic, she made an appointment for me to see Dr. Vahdat on 5/28/13.
So that Tuesday, I woke up bright and early and caught my flight to New York. I cabbed it to the office with plenty of time to spare. I first met with a medical student who wanted to review my scans. She asks me about the "spots" located on my liver and lung. The spot on my liver has been there since at least 2005 because I had a CT scan at that time and this spot showed again in 2012 and now 2013. The lung spot is small and considered "stable" and is on the right side, which is the side of radiation. My Doctor and the doctors that read my scans at Edwards state it is anything a healthy person could have on their lung. Not to mention it was there in 2012 as well. Anyhow, I explain this all to the student. Next I meet with Dr. Vahdat. She asks the same questions as the student. She tells me in order to consent, she wants the CD's of my CT scan from 2005 and 2012. I held it together in the office, but was rather annoyed. I felt if they had read my reports that they requested and had questions, they would have requested these before I traveled to New York.
I book it back to the airport to come home so I don't miss another day of work since I was not consenting on this trip and spend my evening in the airport until finally at midnight they cancelled my flight due to weather in Chicago. Luckily my dad had points so he was able to get me a room close to the airport. He booked a room with double beds and told me to make sure I took advantage of both beds....The next morning I concocted a nice story to my aunt that since Dad did that I offered the other bed to a nice man I met at the airport who was selling watches! HA! I was a bit delirious and bored at this point. I get home by 11:30 but I was way too tired to work since I had been up since 4 the morning before.
I came home and Don overnighted the requested CD's Dr. Vahdat's office and they are delivered on 5/30/13. From there, I sent daily e-mails and made daily phone calls and left messages to inquire that they received the CD's and can you give me as much advance notice of when I need to be back since I will need to make flight arrangements. All the while I still think, I'm giving them a chance, they aren't used to patients traveling maybe. It was an oversight. Last week comes and still no response. Don got involved and talked to the office manager who tells him that Dr. Vahdat is at a conference, but someone will respond to me that day. Finally last Wednesday I get an e-mail from the nurse that my CD's are still with Pathology. I ask if I could get an extension to the 4 week consent period. The nurse says she will ask Dr. Vahdat and then silence.....Oh and let me tell you, all the while when they would respond by e-mail, I was known as Amber, Ambar and Andrea....
Finally Monday I had had it. I have questioned from my trip if I really wanted to invest in this. I would be required to travel once a month to New York for blood tests. This is not an FDA approved drugs and it does come with some toxicity issues. If this doctor can't call a patient back to confirm receipt of a CD, will she call me back if I am sick and in Illinois? Can I trust her to review my monthly blood work? So when I checked my e-mail on Monday and still didn't have a response, I sent Dr. Vahdat, the nurse and the office manager an e-mail explaining to them how upset I was with the follow up. I ended my e-mail by letting them know I was not interested. I explained to them that this was very difficult because this is not a business transaction where I can take my business elsewhere. This is a trial that could potentially keep me cancer free. I also let Dr. Vahdat know that I thought by her not responding to my CD's that were sent and several patient inquiries was negligent. It is a shame it did not work out and even after sending it, I still wasn't sure if this was the right choice, but I was losing sleep, I had that anxious feeling again that what if my doctor missed something. Who can I trust??? I sent this e-mail and within 15 minutes I had a response from Dr. Vahdat. She explained to me that my scans were with Pathology still and that the delay was actually caused from my Oncologist not responding to her timely and that she was at an Oncologist seminar (really, every Oncologist was there at McCormick place and I will guarantee McCormick place allowed the use of cell phones, they are doctors for Gods sake). Anyhow, I didn't argue, I thought I said what I needed to say, move on. Oh and also my oncologist and I had spoken last week in regards to the spots and he offered to do any test possible to speed this up, so I really don't think he was not responding to her.
To solidify that I made the right decision (you know me, always looking for a sign), I get an e-mail from the office manager at Dr. Vahdat's office yesterday and she apologizes for not meeting my expectations, but the pathology department is unable to open the CD that was sent and they are going to need to send it to the main hospital to view, but this will cost money. How would they like me to proceed. So I couldn't help myself, I responded and thanked them for the sign that continuing to work with them was not an option. Dr. Vahdat flat out lied to me. She claimed my tests had been with pathology for a week. Did they try for a week to "open" the CD? Wow!
Needless to say, I will not be participating in any clinical trial this summer in New York. I am open to ideas so if you hear of anything, please let me know as I still am looking for the right thing to do to stay cancer free. It really is a shame that this happened. I know I get more out of this then they do, but I can not operate this way. On top of it, like I said, it was causing anxiety issues because she opened up a concern and then left me hanging. I mentioned this in the e-mail and I truly mean it :" I hope none of you or a loved one are ever on the other side of cancer". It is so true, they were wreck less with my information and in my opinion are not taking the trial serious. Trials are not for everyone, they are time consuming and may be pointless, I would think if a patient volunteers, they would jump on it. Just sad.
Everything else is GREAT! Justin graduated Kindergarten and starts T-Ball tomorrow night. He told me that he is excited for first grade, but doesn't think he wants to go to 2nd grade because he heard the math is challenging....Ryan is talking more and more every day. He knows where is nose and belly is. And is obsessed with animals. They both keep me going! I'm excited to spend the summer with them. Disney is planned (Still a surprise so don't mention it if you see them) and we have a trip to North Carolina booked for August as well. Other then that, we are going to explore Illinois. If you want us to visit, let us know!