The “second opinion game”

Being an experienced cancer patient has its benefits like definitely not showing up an hour early for an appointment because doctors are never on time and if you have filled out paper work, you become an expert in completing paperwork in seconds flat. So, why sit in a doctor’s office for an hour as you can usually find other more entertaining options.

The game of a “second opinion”

You can judge a facility by 2 things: the Internet connectivity which Jim determines that whoever set up this set this up wrong here and how do they treat the patients. Yes, they care, but again the bureaucracy waits…Here is the mystery which I will never understand. You are unable to schedule an appointment unless you have all files, discs, records to a facility. Well, we had verbal and physical confirmation of the 75 page fax. MD Anderson uses an outsourcing agency to obtain other records which I never called to see if they actually did their job. (mistake number 1 and lesson learned #567 you must follow up on every aspect of your appointment to any facility or you will get angry, frustrated, and possibly cry because it is inevitable that they NEVER received anything, lost everything, OR DID NOT DO THEIR JOB. ) You also will be informed that you must educate a resident or fellow and earn enough points in the game to actually speak to the doctor. Often if the resident, fellow or whoever is “taking notes” will not be able to keep up with your history because you are now teaching them. You can ask for a more competent person, but this usually does not work. If a resident or fellow sucks, then you will be unable to make the most of the appointment.  You will not earn enough points to see THE DOCTOR. You can stop this game and request another turn or another fellow since odds are there has to be a good one on the team.  If you have waited more than 2 hours to see the doctor and taken a flight then you might as well ask to get another one.

This was our situation. MD Anderson never had received anything even though we eventually saw it on the screen while the low man on the totem pole was taking notes. (It is useful to be an upside down reader or one who can look at someone’s screen while they are “searching”) MD Anderson’s outsource service did not do their job either. We had waited now over 3 hours and the food sucks here worse than any hospital, so we were lucky to have a good breakfast. I was so frustrated not only because I thought I did my job by faxing and confirming the fax, but I forgot that I needed to do their job too. I was too upset to explain my history. Jim had to translate because I literally was going to explode as they were not respecting my time as a cancer patient. I am told that they see a zillion people asking a zillion 2nd opinions. I explained that my family lives here, so there is already a doctor/patient relationship beyond a second opinion. Jim reminded me that my goal is to find out several things: if they have seen someone like me (who has 3 different types of cancer cells-very rare) how do they treat someone like me, and what would be my options. After ONE HOUR of explaining MY ENTIRE HISTORY, the low man “translates the info” to the doctor. I was finding this manual way of doing things very OLD SCHOOL and expected much more from MD Anderson.  We are now at the 4 hour and 15 minute mark passed. The doctor entered. Besides the horrible exams where I think they may have removed my spleen somehow or wanted to have their own personal tissue sample, I was puzzled by the persistence and questions of this team wanting me to fully understand my prognosis. They wouldn’t stop until I said that I realize there is no cure and I will either die from the cancer, chemo, or some combination of the two. I didn’t know what they wanted to hear. They seemed to explain that I did not fully understand. We had to move to the 3rd phase of this appointment which was the table/tissue phase. You entered a room where there sat the box of tissue and the diagram of gynecology parts. I decided in advance that I would need neither the tissues nor the diagram. We started again with the asking if I really understood my prognosis. The diagram drawing started like some mathematical problem. If I have taken all these drugs and my cancer keeps coming back, I would never have remission. The options as they see it are taking weekly chemo and/or uprooting my family to MD Anderson for a phase 1 trial since they seemed to think I have no options. I was confused and upset. I didn’t realize that I was a guinea pig for phase 1 options and I also didn’t realize that there was no hope. On paper, I looked like a lost cause. I couldn’t believe what I was hearing. Jim couldn’t believe it either. The reality of the situation tossed at us like I was not a patient who has an 11 year old son. I pointed this out. The doctor’s nose turned red and I began to cry. I said I would do whatever I had to do to stay alive for as long as I can. They wanted to bring in the phase 1 trial people or wanted me to make an appointment to see them. At UCLA, we had already discussed the weekly chemo, but my docs want to keep that on the back burner because they know I want quality of life.  Jim and I wanted to jump out of that room and could care less about a phase 1 person. They insisted and sent in the lady with half of a face and a missing eye. No kidding. As if things were not bad enough, we had to meet this woman. After several minutes, she explained that this phase 1 trial was also in Oceanside. Are you kidding me? So, I guess we did not have to move our family to Houston today. Jim stood up and was ready to leave. I did not have the strength to get up as I felt that someone had just smacked me in the face with too much reality. A comment was that “didn’t your doctors tell you this”.  So, MD Anderson left me with their recommendation which was that I had no options. No remission. No break. Chemo will eventually stop working since my cells they felt were chemo resistant. What about tomorrow? I become their guinea pig if it was up to them.

I decided when I wanted to leave MD Anderson it was impossible. Everything seemed to take too long. I had a full breakdown in the lobby outside the elevator. A volunteer tried to help, but in the meantime, my mom said she would come in a taxi to get us. I was broken and Jim was too. Then, in the day my thoughts came back to my team at UCLA and I realized that what was missing in the MD Anderson business model was hope and knowledge of me as a patient or as a person. Even my uncle said this to me and he is a doctor too. He said that if a patient comes to him for another opinion, he asks to see them again to get a sense of who they are. These MD Anderson people don’t know me and had no sense about me. They wanted to make their billing higher and make it worth their while even at my expense. I am not the typical cancer patient, but how would they know that. How would they know that I show up to my chemo armed with treats and sunshine? How would they know that even when I felt my worse, I went on a cruise to Europe and managed my side effects? How would they know that after an allergic reaction to my chemo, I joked that I wanted a good Halloween make up for a costume. How could they know that I have friends and family who cheer me on every day and give me the strength to fight on? I trust my UCLA team would have told me if I had no options. In fact, I remember that there are options starting January and as my doc says, “things change all the time”. My team has not given up hope and either will I! So, did I get answers from my visit? I did receive a dose of reality mixed with a couple of contacts in the So Cal area. I did get another perspective on an interesting business model for viewing a cancer patient. Yes, I realized that many people do go to MD Anderson for a second opinion when they don’t have options. I do have options and until my team tells me otherwise, I have to keep going. Yes, I will take with me from my appointment that I should plan ahead and make the most of every single day. I don’t want to be caught off guard like last time when my cancer grew and grew and I was too sick to do much. I need to make the most of the good days. I need to have conversations and say what I mean every day. I do need to talk about difficult things too, but not dwell on the reality.

Most importantly, my visit in Houston proved to be such a valuable time in seeing my family and friends who are like family. I am so proud of my niece who is growing up to be such a wonderful young woman.  I ask all of you to not let too much time pass to see your family and those who are dear to you. You never know what tomorrow will bring and it is important to say what you feel today. I cannot explain how wonderful it was seeing everyone.  Even though we had not seen each other for years, it was just like we saw each other yesterday. Yes, there was the addition of new children who are extensions of these family members. It seems strange that we are now parents. There was much laughter and a ton of love in Houston. Nothing can beat that! The extreme emotions that I experienced were worth every second. It was the extreme joy and happiness that overwhelmed the MD Anderson dose of reality. There is always hope and no one can take that away from me. Back to Vickie Girard, “for I have walked the road ahead of you and I have come back to tell you that in the darkest of dark and the deepest of despair there is hope-and where there is hope, all things are possible.”

 

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2 Responses to “The “second opinion game””

  1. Kelly Says:

    NEGU! As my mother used to say you never know what tomorrow will bring. MD Anderson does not know my friend Joanie. NEGU!

  2. Gina Says:

    You are so inspirational. Love you!

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