4/7: Difficulties of navigating cancer
Originally written: Dr. Rick Brown, Nov 28, 2016
Roller Coasters
I am not fond of roller coasters . That started when I was 10 years old. The Kawanis carnival would come to Livingston ,New Jersey ,where I grew up, for a week every summer. It was a big deal, and if we were good, we might go a few times in that week. It was a dusty affair with the smell of cotton candy, the ringing of bells, Stuffed animals and cheap, easily movable rides. The culprit at that time was not actually a roller coaster, but the tilt-a-whirl. That is when G force motion first made me sick. Over the years I have tolerated it when I had to, or when we took the kids to Great America. I knew that I would be nauseous for the day and that it would take a good nights sleep to shake off the effects.It was just a matter of sleep and patience.
I'm still not fond of roller coasters and the jerky and unpredictable , off-balance feelings they elicit. . The pressure on my brain and organs and the accompanying nausea is, for me, a most unpleasurable experience. If you ever want a confession or State secrets from me, just make me nauseous.
This most recent roller coaster ride started with the initial diagnosis of rectal cancer back in September. Just as the realization was beginning to settle in, a second diagnosis of lung cancer was made. I felt like I couldn't get a break. I didn't know whether to sit or stand, laugh or cry.
The next two months were filled with a multitude of diagnostic and doctor appointments, ranging 20 disciplines, at three hospitals. You would think that the opinions from these top flight institutions would align, but that's not the case. The more I drilled down and asked questions, the more I realized there was a lot of variation within the medical model. What is even more interesting is the generally unspoken , although polite, animosity between "colleagues" from different institutions who hold different viewpoints and opinions. One Doctor considered what he does the "Lexus "of surgeries while that of a colleague at a different institution is viewed as a "Pinto". That analogy was actually presented to me. There were times when I wasn't sure if I was in a hospital , or in a car dealership.
These differences in opinions and approaches, I was told, are based on "the science". The thing is, they are all reading the same studies , sometimes performed 30 years ago, and coming to different conclusions. And everyone feels they are right. This includes my own holistic biases. The trick for me was finding some sort of balance between my own convictions and the medical "standard of care".
I found myself on one of the most topsy-turvy roller coaster rides of my life. I came to recognize that every time I met with a new group of doctors, that I would go into a depression ,and need a couple of days to process all that was presented to me. The ups and downs were remarkably off -balancing. Those who were sharing in my process at the time provided ballast and a perspective that were both welcome and stabilizing. To those , I once again share my gratitude. It was quite a ride.(And I anticipate will continue to be)
It has been two weeks since the lung surgery.About half of that time has been spent at home with a chest tube. The pain has been up and down.Sometimes managed well, sometimes not so much.A few good hours could morph into rocking , breath-holding, discomfort for the next few. Medication and sleep were/are my refuge during those times.
The chest tube has stopped draining fluid and air in the last 12 hours, and through the loving kindness of those who support me, I have an appointment on Thursday with a thoracic surgeon at Rush Memorial who(I hope) will remove the chest tube. Dr. Seder has never seen me before, but is willing to do it out of the kindness of his heart, and out of respect for fellow colleagues and for the surgeons at Mayo where he did previous training. (I refuse to return to the "Lexus" doctor at Northwestern). Dr. Seder and Theresa have saved me from another 12 hour round trip back to Mayo which I was willing to make, but am glad I don't have to.
The ups and downs of this roller coaster ride have been an integral part of the journey. I'm coming to anticipate the instability and brace for it. Although my hopes are up about Thursday, I'm armoring myself against the possibility that the tube may not be removed. Like I said, "I'm not fond of roller coasters", but for the time being it's the only ride in town.
