Chapter 6: Too Much Information

Chapter 6: Too Much Information

So by this point I hear you saying “OK Dave I get it. You don’t like chemo. Who does? Why not take a different treatment path?” Good point. Let’s take a look at those. All of these “treatments” were found doing a Google search for “cure for Hodgkin’s Lymphoma.”

“Making dietary changes such as eliminating sugar from the diet as sugar feeds cancer and eating whole foods slows and can even reverse the progression of cancer. Likewise, taking probiotics or eating fermented food such as kefir and sauerkraut eliminates toxins in the body and boosts the immune system, which also cleanses the lymphatic system.”[1]

OK, sauerkraut salvation. Or,

“A new study published in the journal PLoS One as well as the National Institute of Health has found that cannabis may serve as a treatment for Hodgkin lymphoma…”[2]

Can I just tell you the number of people (whom I will not identify at this juncture) offered me pot throughout this? I mean, a lot. Like 20. Now I’m not taking a firm stand on legalizing marijuana, but it’s not for me. Besides, as we’ll get into later, there are plenty of prescriptions that do the job (one of which is more or less legalized heroin). Still, even these folks were offering me pot for the side effects, not as a cure.

“What helped me was prayer and intent and healing stones and dream healing.”[3]

I get the prayer thing. Throughout treatment my key ring was chocked full of saints from my mother-in-law, I kept warm under a prayer shawl from my mother’s church, a colleague nearly set Europe on fire lighting candles for me, and I’m pretty sure my wife has me sleeping on some sort of prayer cloth hidden under the mattress. However healing stones and dream healing? Next.

“Sweating is powerful way to cleanse your body from accumulated toxins. examples:

– exercise with a lot of clothes

– Sauna

– drink warm tea in a hot room …

– eat CAYENNE pepper! …

It is known that some modern industrial toxins and pesticides can leave your body only through sweat glands!”[4]

Imagine that. Here I was putting toxins into my body when I should be sweating them out. By the way I always do the treadmill in a three-piece suit now while eating Taco Bell.

I could keep going here, but I think this is a great point to talk about a subject near and dear to my heart: information. Let me tell you when you are diagnosed with cancer there is no shortage of information.

Here’s just a quick sample of all of the documents I received after being diagnosed:

  • Hodgkin’s Lymphoma packet from The Leukemia & Lymphoma Society
  • Medical treatment organizer from American Cancer Society (who are apparently the official sponsor of birthdays)
  • Nutrition for the person with cancer treatment from the America Cancer Society
  • Sexuality and cancer: For the man who has cancer, and his partner (with illustrations…very detailed illustrations…like, I felt like hiding it under my bed from my mother kind of illustrations) from the American Cancer Society
  • Understanding chemotherapy: a guide for patients and families from the American Cancer Society
  • Medical treatment organizer from the BAG IT! Foundation
  • Eating Hints from the National Cancer Institute
  • Thinking about complementary & alternative medicine from the National Cancer Institute
  • Chemotherapy and you from the National Cancer Institute
  • Facing Forward: life after cancer treatment from the National Cancer Institute
  • Taking part in cancer treatment research studies from the National Cancer Institute
  • Taking time: support people with cancer from the National Cancer Institute
  • Support for caregivers: when someone you love is being treated for cancer from the National Cancer Institute
  • Teamwork: the cancer patient’s guide to talking with your doctor from the National Coalition for Cancer Survivorship

If I needed more to read after I finished those, no problem. My local public library lists over 1,200 books on the subject of cancer including the Betty Crocker Living with Cancer Cookbook. Then I can start into the websites.

What’s the problem here? Information good, right? More information, more good, right? So doctors, nurses, and the cancer societies of the universe should keep heaping it on, right?

Information is good, but there are two problems you encounter with such a huge pool of information: there is a LOT of variation in the pool that often contradicts itself, and information is not the goal here, knowledge is.

1 out of 1,000 Experts Agree

Let’s take that first problem, too much contradiction. This includes my previous examples of major differences in belief systems (the medical approach that pushes chemo based on scientific studies versus alternative approaches that value other things like healing stones and sweating). It also includes the fact that purposes behind the dissemination of information can lead to conflicts. Is this information from a doctor? Is this information paid for by pharmaceutical companies seeking more use of their products? But even accounting for these conflicts, the big issue is simply the awe-inspiring variety in people’s personal experiences with cancer.

I discovered this problem of too much idiosyncratic information when my wife was pregnant for the first time. Do you know how many things can go wrong during a pregnancy? Turns out a lot, and there is a blog devoted to each and every possibility. By the time you walk away searching the web you just want to take your wife, wrap her in bubble wrap and check her into the nearest hospital for the duration. Mind you, this was searching a web that was 14 years younger before folks Instagrammed their birth experiences (please stop that).

Cancer is the same thing. Some folks on ABVD (my chemo regime) zip through it with not one side effect. Others are puking their guts out within minutes of getting the chemicals. Some folks go to bed for six months, some folks are getting radiation at the same time (why wasn’t I being irradiated?!?).

You might think the old fallback of sticking with “reputable sources” would solve this problem. You’d be wrong. Try and read the reputable peer-reviewed scientific medical journals. First you’ll see that a huge number of articles are about three paragraphs long. Seriously, I can’t even show you an example here because I would end up including the whole article and violating copyright. The longer pieces? Turns out that I’m a doctor, but not that kind of doctor. Not to mention that the focus of these articles is often on future practice (they are research oriented after all). So you may read about a promising treatment and find out that so far three mice are responding well.

Dismissing for a moment the conspiracy theorists (“cancer cures are hidden away by Big Pharma looking to make money on chemo drugs”), the purely personal journey stuff (“I was only able to run half-marathons during treatment”), what do all of these sources seem to agree on? Hodgkin’s Lymphoma is curable, and chemotherapy is the best approach to take. Also, you shouldn’t have sex with a platelet count below 50, you should wash your fruits and vegetables when your white cell count falls below 4, and it’s OK to be down (but not depressed) during your “journey with cancer.”

What Doctors Can Learn from Professors

The second problem you encounter with this huge body of information on cancer is the lack of mechanisms to translate information into knowledge.

In medicine, and just about every industry, they think of information as a sort of magic fairy dust. If you have a problem, just sprinkle information on it. This certainly seems to be the approach of the American Cancer Society and the National Cancer Institute: “David has cancer and is confused. Quick! Inform the hell out of him!” This information fairy dust takes the form of books, printouts, websites, and pamphlets. What do we expect? That the information contained in these sources is just going to go into my head by osmosis? I wish (it would have made high-school French much easier). Even the excellent non-book/print services of places like the Leukemia & Lymphoma Society (peer counseling, support groups, local events) are easily lost in a sea of “available information.”

Information doesn’t work like that. In fact, information doesn’t really do anything. It is knowledge that matters. In other words, it’s not how many books you have; it’s what you learned from those books. It’s not how many informational pamphlets you get, it’s how much of the advice in those pamphlets actually change how you see and interact with the world. It is not information that matters – its knowledge.

Look at how we educate doctors in this country. Sure it starts in the classroom, but then it happens by focusing on people doing things…not just reading about them. Want to learn how to do a bone marrow biopsy? Get on this guy’s back and start digging. Now imagine if doctors extended this focus on learning and action over “informing” to their patients. Want to control diabetes? Instead of “Take these pills and lose weight,” it becomes “Do you understand what your body is doing with sugar and why extra weight is so problematic? Here is a pill…and here is how it works.” Which is faster? Write the prescription. Which is more effective? All the medical literature I read says the knowledge approach…I’m sorry, the patient-centered approach.

This idea of both more inclusion of the patient and situating the patient in a larger context could be seen in a recent visit of my brother-in-law to his primary care physician. Joe’s doctor asked, “Do you wear your seatbelt? Have you recently changed the batteries in your smoke alarm? Do you have a gun in the house?” Why these questions? It turns out that Joe is much more likely to die from car crashes, house fires, and accidental gunshots than any ailment at his age. It also gives Joe specific actions he can take now to continue his good health. While this may be natural for a primary care physician it is also important for a specialist. For example, knowing if a stem cell transplant patient gardens can be key to saving their life. You see, the transplant patient has a compromised immune system, and newly turned soil is full of bacteria and fungi that can lead to a life-threatening infection. If the doctor doesn’t know enough about the patient to warn them: potential catastrophe. If the patient doesn’t understand the concern enough to heed the warning: potential catastrophe.

Now I know what you are saying doctors. “I don’t have the time to turn everyone else into a physician.” Right. But do you have time to prepare a patient to at least be able to take care of themselves? Once again, if the goal is not the number of patients seen, but the ongoing health of a patient, you have to give that patient the tools and knowledge to take care of themselves. What’s more, just because you may not have time to teach the patient, don’t think that means the patient won’t learn something anyway. Remember the healing stones and dream therapy? Remember sweating out the cancer? Patients will, and should, seek out knowledge on their condition. If the evidence-based medical community abdicates this role in teaching (not just treating) the patient, others will gladly fill it with the information equivalent of snake oil.

If you accept that patients need to be a part of their care, and they have to be knowledgeable about their conditions and/or the means to stay healthy, then you too need to see medicine as a knowledge profession. Not simply because you, the doctor, need to be knowledgeable, but because you increase the knowledge of those you serve. That goes beyond handing them a printout. That goes beyond a 15 minute run-through of basic immunology after you tell someone they have a potentially lethal disease.

This must be considered and planned for. Doctors and nurses need to know about teaching. They need to know about learning and learning styles. We are already seeing this reflected in how medical students are being prepared. The MCAT, the test used for entrance into medical school, for example has dumped a whole lot of organic chemistry questions for psychology questions.[5]  I know it is asking a lot of med students on top of all the immunology you need to know, but it will be worth it.

Now…back to my story.