Bertrand Russell, the philosopher, was once quoted as saying;" passive acceptance of the teacher's wisdom is easy to most boys and girls. It involves no effort of independent thought, and seems rational because the teacher knows more than his (or her) pupils...yet the habit of passive acceptance is a disastrous one in later life. It causes man to seek and to accept a leader, and to accept as a leader whoever is established in that position."
I believe most of us apply "passive acceptance" when it comes to our physicians and to our own health. I am glad to finally have found the term for our inherent condition. It can happen to any of us. We can be a stubborn and tenacious leader in our every day life, but when it comes to our doctors...we acquiesce to their decisions and their assessments of us. I am not blaming anyone for doing this. I have done it myself. I did it all the way until I got cancer.
Before my diagnosis, I was really good at diagnosing our own family problems...from Michael's sleep apnea to my generalized anxiety. I figured out that I was hypoglycemic and I told my doctor so she could perform the test to confirm it. She did and I was hypoglycemic. But, I started to have periods of major exhaustion after Morgan was born. I pushed my doctor for more tests. i asked for basic bloodwork and for additional assessments.
Everything came back normal, yet I wasn't acting normal. I was sleepy all the time, my energy was all over the place. I used to be able to work out and was very athletic through college. Yet during this period of time, there wasn't much I could do in terms of exercise. I was greyed out, pale. And, when I would get sick with something, it would really knock me out for days. I wasn't behaving like a 32-year-old, yet my doctos had done all they could do with basic testing and I accepted it. (I have a great primary care physician and am not sure if I could have pushed harder in any way. They did their best for me, but traditional medicine doesn't always know how to deal with the unknown. Doctors apply a standard of care that works for most people, but not all people.)
When I got diagnosed, it was a form of validation for me. I realized that the cancer was what was causing my exhaustion. My body was fighting it off, yet there was no tumor for me to notice. So the mystery of my energy loss was not known until I found my lump in December 2004. I was scared and so was Michael. All the information we got for my diagnosis was that my disease was aggressive, that it wasn't normal for people my age to get this disease. Yet, I sat in my first oncologist's office and had him assess me. He seemed to think I was pretty standard.
He said my cancer was probably stage I or II and that I probably didn't have lymph node involvement. He said I might, though. However, he thought it was unlikely that i had cancer elsewhere so they wouldn't do full body scans or tumor markers on me. There was no need. He told me that by the time they find cancer on other body parts, there is nothing they could do for the person so they don't even do extensive follow-ups.
This oncologist was cute and had all the right credentials. If I was interviewing for the best oncologist in the area, he would have made the cut by credentials alone. His cuteness made him even more intimidating to me. Michael and I joked about it that day because Michael said he was cute as a button. He was just a couple of years older than me and seemed to really like me. He thought i should do four rounds of chemo and be done with cancer. He thought that would be all I needed.
I was dumbfounded because I had been going to all these meetings where people said I had aggressive disease and he was telling me I was standard. So standard that they would only address recurrence with minimal efforts. He started talking about statistics of survival, which I can assure you are not comforting...that is when it hit me. He saw me as a number, just one more person that would go through his office. In most instances he would be right with his assessment and I harbor no bad feelings toward him, but he was wrong in my case. I was already stage IV, sitting in his office. I had a small tumor on my liver that KU would find through full body scans.
I am thankful, in retrospect, that my rejection of "passive acceptance" kicked in...that I was able to follow my instinct and know that my cancer was not standard, that I was not a statistic and that I wanted to do all I could to survive this disease. I am surprised that I acknowledged my voice in the process. I just knew I had a 0.4% chance of getting this disease and I still got it...so if I am THAT unique, then I am unique enough for a detailed assessment of my body and actual knowledge that there is or isn't anymore cancer in my body. I am also unique enough to survive it regardless of the survival statistics.
I was polite to him, but I had already made my decision before I left his office. I had scheduled a second opinion at KU, but Michael and I were hopeful that our KU second opinion would become our doctor. I knew we were going to "break up" with our first oncologist. I realized then that just because he came recommended by my surgeon, didn't mean I needed to accept him on our medical team. He was a good doctor, just not my doctor.
I did some research on my disease, came up with a list of questions for the second opinion doctor regarding my parameters for success. These were things that Michael and I wanted to know (e.g the use of full body scans and tumor markers, standard chemo for a young girl like me, etc.) I went to a support group and got their seasoned input. Then we made our way to our second opinion. Michael and I met with the doctor and his team. We asked our questions. We did our interview and decided he would be our oncologist. He made the cut because his standard of care met ours and because he really listened to me.
This decision to be with Dr. Khan at KU Med has saved my life over and over. He is a trusted member of our medical team, someone who respects my opinion and wants me to ask questions. I am thankful for him every day of my life. I am not sure where my courage came from, to reject the doctor we had been assigned. It was awkward for me, but I felt like cancer backed me in a corner and I was going to come out fighting. I just wanted the best and the brightest fighters to be coming out of that corner with me....and they are!
I encourage each of you to be in charge of your medical team, to have doctors who respect you. Get your questions answered, whatever they are because your opinion matters. You lead your medical team. In most instances, insurance allows you to have the freedom to hire and fire so use it! Reject passive acceptance! You are your health are too important for you not too...
Blessings,
Lolo
P.S. The picture is of me in one of my new do rags, camouflage! My friend, Tina, got it for me along with some others. Very cool of her!
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