To Chemo or not to Chemo, that is the Question! A Cautionary (and Cathartic) Tale.

(pic credit: ilovegrowingmarijuana )

My message, in a nutshell, is question everything! Do not be afraid to ask questions of doctors. I have seen bumbling doctors and I've seen the very best in the world. None of them are immune to error. None of them know everything there is to know.

My dad, whom I cherish, had a health crisis six months ago. He had some dental work that led to a strange case of encephalitis that landed him in the hospital. During his stay, he had an MRI, which was "very unusual" and we were told showed leukemia in his ventricles and lymphoma all over his brain! The doctors wanted to put a port in his brain and start chemo the following day. We asked for time to think the decision through. We wanted to discuss what the prognosis would be with and without chemo. Emotional manipulation (and I would say abuse) ensued. The doctors said we did "not want to treat" my dad, which was the opposite of true! We wanted to make an informed decision and weigh the risk vs benefit of all options. Confusingly we were alternately praised or scolded, depending on the doctor, for asking for more time to process everything. One doctor who had been particularly cruel, labeling me as having decided "not to save" my father, the next day sidled up to me at the hospital and ingratiatingly began to inform me I was "making the right decision" to just take my dad home (to die). I made it clear that was not what we were doing, but he refused to hear it. What happened next was even worse.

With my dad too sick to be moved out of the hospital, we were stuck without a second opinion. We had telephone conferences with two doctors and asked one of them to get a second opinion from his mentor at a prestigious institution. The judgment came back from on high: wait on the brain port and do 6 rounds of high dose chemo at a pace of every two weeks. The prognosis should be pretty good, they said. Feeling we had spared my dad brain port surgery and yet were cornered into doing something, we proceeded to "save" my dad's life with high dose chemo, which was as bad as it sounds. It ravaged his body and damaged his kidneys. My dad's blood level of chemo remained dangerously high for too long, and it didn't pass out of his body for an entire month! This was not the man we had taken to the hospital. His arms and legs were scrawny, his hair was falling out, and he had aged about 10 years before our eyes. We took a shell of my formerly robust dad home.

A follow up hematologist's appointment a week later left us with doubts about the course of treatment. Already, the doctor said he would not use as high a dose this time, although it would still be considered "high dose chemo." But how could he survive this another 5 times? The doctor also made some small errors in reading test results in front of us that nagged at me. Reluctantly, however, we scheduled the second chemo and went home. My mom and I spent a couple of late nights on the internet researching things and made a snap decision we were not going back for more chemo. We booked an air ticket to one of the most respected cancer institutions on the planet, MD Anderson in Texas, determined to get a top notch second opinion, and we did. What happened next blew our minds.

MD Anderson started from scratch with all their own tests. It was quite a culture shock to encounter this well oiled machine with thousands of patients swarming the corridors all receiving first class, cutting edge treatment. Teams of doctors of all disciplines were instantly collaborating to solve all, and patients were overheard in waiting rooms singing their praises. Then came the shock diagnosis: yes, leukemia was found in the spinal fluid, and the MRI was abnormal, but there were NO LYMPHOMAS anywhere to be seen. In a panic, I dug out the MRI report from the previous hospital and went over it for the first time myself. It did not say lymphoma anywhere! My dad had been misdiagnosed! He had been unnecessarily treated with high dose chemo! Angry does not begin to cover what we were feeling towards the previous hospital and doctors. And my anger at myself for not actually reading the MRI report embodied a bitter lesson that I intended to absorb completely.

To make a long, complicated story short, we ultimately decided to seek treatment from the doctors we trusted. The new plan was a targeted cancer drug and some low dose chemo directly put into the spinal fluid. This sounded much more palatable than the high dose plan. A few treatments and we could take my dad home to recover completely... or so we thought. The chemo was proceeding as planned, but blood clots, a fall with a broken nose, and a second round of very serious, unexplainable encephalitis followed. I watched world class doctors scratching their heads not knowing what to do, why this was happening, or how to treat my dad. Some doctors said he should be on multiple antibiotics. Some said other medications. One doctor finally came in and said, "why is your dad on all these medications? I'm stopping them all." 8 hours later my dad woke up from his pharmaceutical "coma" and began to recover. This same doc suggested maybe my dad didn't need chemo at all! The dream team disagreed, however, so all the while, the spinal chemo proceeded as planned. Soon, we were nearing the end of treatment. And then, suddenly, my dad couldn't feel his legs. They stopped all treatment except for the cancer pill, happily discharged him, and we brought home a broken man who may or may not ever walk again. Decisions have consequences.

One consequence is that my mom cannot care for my dad in this state, so he is living in a rehab facility, where he is working on learning to walk again. It's a devastating thing to suddenly not be able to walk, when you were jogging six months ago. And now we have to reflect on our part in this outcome. It was our decisions and trust in the doctors that led to this. My dad's new hematologist (since we were never going back to the one who misdiagnosed him) said he knew the spinal chemo was risky and could have this outcome. He said that doctors at prestigious hospitals can be arrogant and not as cautious, as he's learned to be over his career. He also suggested that maybe my dad hadn't needed any chemo at all. What a heavy thought.

So what have I learned that I believe would benefit everyone?

1. Always, always read ALL medical test results! Don't allow your devastation or lack of medical knowledge to interfere with going over all important test results to verify what the doctors are claiming is wrong!
2. In the case of cancer, always try to get a second, and even a third opinion. We thought we were taking a conservative approach with my dad because we were convinced chemo was necessary because of where we had started from. But if we had never been told the untruth that my dad had lymphoma all over his brain, I'm certain we wouldn't have been so agreeable to the spinal chemo.
3. Do not be afraid to question doctors. We questioned them a lot, and we were great advocates for my dad which made a big difference. My dad's doctors knew we would be keeping them on their toes, and yet, looking back, we should have done it more.
4. Do your own research when it comes to your cancer treatment, or any medical treatment. Do the statistics justify the treatment? Do the side effects justify the treatment? Is there any harm in taking more time to make the decision or taking a "watch and wait" approach? We wish we had been even more cautious than we were. My dad is paying a big price. The doctor doesn't pay the price or have to pick up the pieces. The patient and the patient's family does.

And now that I have presented the moral of this tale, I must disclaim: I am not attempting to persuade or dissuade anyone regarding any medical treatment. I am advocating doing your own research and not being intimidated by white coats! Godspeed, Steemians!

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My last blog: Switching from Neosporine to Ozone Oil for Minor Wounds