Lessons from My Father’s Experience (Pancreatic Cancer)

Gasja_tearo

 

It's been two years since my father's passing. I packed everything up and had to move across the country to get away from it all. Now that I can finally face what happened without going into a dark place and blaming myself, I'd like to share the lessons and specific experiences my family learned with you all. I sincerely hope you won't make the same mistakes we did.

 

I'm going to begin with the hardest part first. My father's death was extremely unusual. He died from drowning in his own blood. We were told that the cancer had spread to his lungs, and formed mini tumors surrounded by small blood vessels, and that these vessels were so tightly rounded that they kept rubbing against each other and breaking each other, thus causing uncontrollable bleeding.  Toward the end, there were dark red tubes attached to each of his lungs, in order to drain the blood. But they weren't draining fast enough, so the blood formed a dark red pleural effusion in his lungs. They rose higher and higher, until he couldn't breath any more, eventually causing asphyxiation and heart attack (because his heart couldn't get the oxygen it needed). I will never forget the dark blood gushing out of his nostrils, mouth at the end. No one should ever die that way.

 

We were told that this kind of death only happened to lung cancer patients, not pancreatic cancer patients, and that even then, it was rare for lung cancer patients. So what could have caused such a gruesome death?

 

A few weeks before, we had met with a young fellow at John Hopkins Hospital. He told us about a chemo combination called GTX-C. He said it was very promising that all of the patients who had tried it as a first line of therapy had reacted well.  So we went ahead with this therapy. My dad had previously had Gemcitabene and Folforinox and both had stopped working. By this time, he was extremely weak and like all cancer patients, still hopeful. His pancreatic cancer had just metastasized to his liver.

 

What we didn't know, and now suspect, with the benefit of hindsight and more medical consultation after he was hospitalized, was that it was an extremely new and risky treatment, for any patient, let alone for my father, whose condition had already deteriorated drastically and had been through a first and second line of chemotherapy.  My parents did not speak English well, but they trusted this fellow.

 

This experiment was headed by the fellow's supervisor, Dr. Laheru. My parents were referred to him by their oncologist in Singapore. They traveled to the US in the hopes of enrolling in his immunotherapy clinical trial.  Even though Dr. Laheru was ostensibly in charge of my father's treatment, in the year and half that we were there, we only saw him a few times. Instead, the follow functioned like my father's only oncologist. We were later told by others that this was extremely unusual and irresponsible.  At one point, we heard good things about a Dr. Le, and asked to transfer to her care, but we were told that Dr. Laheru would not let us. We suspect this had to do with money and billing. 

 

Because of the experimental nature of this treatment, we suspect in hindsight that Dr. Laheru had trouble recruiting patients to try this treatment. So this fellow, being Laheru's supervisee, was eager to please him and manipulated my father's trust in him, to sign my father up for this risky chemotherapy regime.

 

After his first infusion, my father could hardly walk anymore. He became extremely out of breath and had trouble breathing. At his second infusion, we told the fellow about his symptoms and were very worried. An x-ray found that his lungs were filled with liquids, and an extraction from his lungs showed a bucket full of bloody pleural effusion. The technician who drew the effusion from his lungs was so shocked that his face turned white. But despite the results of the test, the fellow went on vacation for a week and could not be reached. 

 

A week passed, and in the middle of the night, my father said he felt like passing out. He appeared to have a high fever, and extremely low blood pressure. We brought him to critical care, where he lasted some time and the massive drainage tubes were inserted into his lungs.

 

A week in, the fellow came back. He freaked out at what happened to my dad. We kept asking about whether GTX-C had caused my father's bleeding. He kept denying this and said that my father was going to die from his cancer anyway.

 

We pointed out that if my father recovered, then that would show GTX-C caused his reaction. Shortly afterwards, I discovered that this fellow had instructed that my father be put on DNR (do not resuscitate) and DNI (do not intubate) against his wishes. Not only that, he went around to the nurses and complained about me not wanting to let my father die, that it was my fault. Later, when I tried to track down the DNI and DNR note, it was missing from my dad's medical record for some mysterious reason.

 

I will never forget the look of relief on his face after my father passed away, and the faint curve of a smile on his lips. There was no remorse at all. Even as he said, "I'm so sorry," I knew what he really meant was, "I told you so. I got away with it this time."

I am resigned to the fact that I will probably never know what happened behind the scene. And I still have nightmares where I watch this guy manipulate other patients into the same end and being aboslutely helpless to stop him. After my father died, I finally Googled this fellow more thoroughly, something I should have done long before. I found a personal website of his, and it collected pictures of tatoos of skulls, owls, and strange occult pictures symbolizing death. It sent a shiver down my spine.

 

So what are my cautionary tips?

 

1. Always seek multiple second opinions for every treatment you are about to embark on. Do not single-mindedly trust any doctor, even if what they recommended previously had worked. In hindsight, we should have asked other doctors for second opinions about GTX-C.

 

2. There is perhaps something wrong with your patient-oncologist relationship, if instead of seeing the oncologist, you see the medical fellow that the oncologist supervises more often than the oncologist.  In the United States, a fellow is someone who just finished their general residency in internal medicine and is not experienced with the particular type of cancer in question. They just started their concentration in cancer. You should not put your life in the hand of a newbie who does not know what they are doing.

 

3. If your treating physician has lied or obfuscated on even small things, insist on transferring yourself or your loved to another physician/doctor. I had caught this Dr. Imus lying on multiple occasions in the course of my father's treatment. But because my father was a gentle soul and did not want to hurt his feelings, he always vetoed any suggestion every time I suggested requesting for another fellow to care for him. I should have ignored his protests and insisted on transferring him out from the care of this manipulative sociopath. Trust and honesty is even more important than competence. We place doctors on a pedestal and easily trust them. The thought that your doctor might be unethical is something that no one wants to think about. But you should place honesty above all else in choosing your oncologist.

 

4. Just because you go to a prestigious medical center does not mean that something like this will not happen to you. The more competitive a place is, the more likely that there were be unethical individuals who lied and manipulated to get their way to the top. You should watch out for yourself and be extremely careful.

 

5. I know this is hard to think about, but visualize how you’re going to spend the end when first and second line of therapy fail, and consider hospice options. Instead of dying a horrific death as the result of an experimental therapy that we weren’t warned about, I wish we had researched our options further and opted for hospice. My father could have had a more peaceful death, some more time with us, and we could have had closure.  Now I feel forever scarred by this experience and had issues trusting doctors after this experience.