Treatment And A Long Overdue Rant

For two and a half years, I’ve undergone chemotherapy.  And EVERY. SINGLE. TIME. I get outraged at the “offerings” in the chemo room.  They have crackers and sugary snacks along with soda and drinks masquerading as “healthy” but are very much NOT such as Ensure and Boost which are primarily comprised of soy and some sort of sweetener such as corn syrup.  Gross.  SO Gross.  That’s disgusting for any human being but reprehensible for providing to cancer patients in a treatment center.

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Let me be clear, this is not only provided for free, but often there is a gray-haired-sweet-older-retired-type lady bringing these “treats” around in a basket and joking about how I should take one because she made them at home this morning.  And she rarely takes “no” the first time.  Last time I told her I don’t eat that junk, in fact I fast for a couple of days leading into treatment to make it more effective and to minimize side effects but when she has some nutritious veggies and meat, to let me know.  She was visibly taken aback.  I’m guessing she’s not used to being turned down let alone with so many words.

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It is well known that sugary, carbohydrate-y substances fuel cancer.  You have to look no further than how a PET scan works which is a common test to see where cancer exists and how greedily it’s gobbling up the radioactive GLUCOSE tracer (FDG).  So, what’s the deal with a cancer treatment center providing substances that are not only the antithesis of health but directly related to fueling the disease that they are supposedly trying to slow or eradicate?   This INFURIATES me.

In the Oskaloosa waiting room and treatment area where I accompanied my dad, weekly, for many months, they do not provide boxed and bagged treats but an elaborate spread of cookies and sweets along with lemonade.  Do you know how hard it was to keep my dad, and also my mom, from eating that stuff?  “Sarah, they wouldn’t put it out if it wasn’t good for you.  They’re a hospital.”  ~Mom.  Did I mention that sugar can also burn out your brain, so to speak, and fuel Alzheimer’s?  Sigh.

Is it malpractice?  Is it a way to keep the “customers” coming back?  What is it?  WHY WOULD ANYONE DO THIS?

I’ve asked.  I’ve asked the nurses.  I’ve asked the doctors.  Mostly I get blank looks with maybe a “patients like it and they complain if we don’t have them” comment with a shrug.  Um, what?  This is a good reason?  If these institutions are serious about “health”, effectively treating disease, increasing longevity (health extrapolated over time), and genuinely caring for their patients, then they need to look at their own backyards and CLEAN THEM UP.  It is time to let go of “it helps with nausea”.  In my experience, it doesn’t.  Same with those I’ve asked.  And if it does help you?  Bring your own “junk”.  Better yet, empower yourself to explore healthier alternatives.

Are patients going to complain?  Absolutely.  Try taking away anything that is free and hyper-palatable from anyone who has grown to expect it.  They can be quite cranky.  Still not a good reason to keep providing it.  Would a doctor provide a cigarette to a smoker because he’s grouchy?  Not a good one.

Don’t even get me started on the well-meaning but possibly misguided non-staff folks that bring in cookies and other unhealthy treats to celebrate milestones or birthdays or whatever-awareness-month it is.  I understand how inextricably food is tied to our lives for good times and bad, for celebrations, for mournings, for boredom, you name it, it is a go-to.  But we are past time for rethinking this aspect for hospitals and treatment centers.  They are the examples, like it or not, and it’s WAY overdue for them to be a good ones.

Or, how about taking a “radical” step and implementing an exercise program in and around the treatment area?   I put radical in quotes because it’s something I do with every treatment.  For me, it is not radical but commonplace.  I do push ups, jumping jacks, yoga, squats, whatever I have room for, in the waiting rooms.  You’d think I’d lost my mind based on people’s reactions.  But isn’t it crazy to NOT do these types of movements?  It can help with the uptake of the chemotherapy into the cancer cells along with other known benefits of exercise and cancer treatment.  (See video below.)  I understand that patients don’t always feel up to those sorts of movements especially if they are recovering from surgery, months into harsh chemotherapy or in end stages of disease, but even chair stretches can provide benefits.  At every stage of my treatment, I have found a way to move.  The more I move, the better I feel.  This is not radical.  I’d rather see this as an option rather than something that is going to decrease my health.

But appropriate exercise under professional supervision – before, during, or after treatment – seems to substantially improve your odds.
Catalyst meets a group of cancer patients that is experiencing extraordinary benefits from prescribed targeted exercise programs.

http://www.abc.net.au/catalyst/stories/4459555.htm

I’m trying to make good decisions for myself and my loved ones, our lives depend on it, and there is plenty of opportunity for me to make bad ones.  I do NOT appreciate being enticed in the chemotherapy room. I am more informed than most there and I can and will resist but for those that aren’t, I feel like they are being taken advantage of.

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These paragraphs from Dr. Colin Champ, radiation oncologist, summarize my thoughts more eloquently so I have copied and pasted them but included a link to the whole article which is a 3-5 minute read.

https://www.myhealthwire.com/news/breakthroughs/897

But unfortunately, what October really turns into is pizza parties and sugar cookies at cancer centers — actually pink sugar cookies with pink ribbons made of pink sugar frosting. It is one thing for cafés and restaurants to be participating, but when hospitals and cancer centers display these “cigarettes” for breast cancer, a line has to be drawn. Awareness of breast cancer has become a celebration of indulging in the things that, well, lead to breast cancer. Anyone confused? I know breast cancer patients sure are.(10)

It is understandable for patients to be unaware of these metabolic connections. However, when they see these unhealthy behaviors not only occurring at cancer centers, but being promoted, what message are we communicating to our patients?

In other words, decreasing the amount of sugar (or sugar cookies) to cancer cells causes them to die in as little as two hours. Even small decreases may work. In the face of toxic treatment, perhaps reducing sugar along with chemotherapy or radiation therapy is the necessary one-two punch to knock out cancer cells. As a radiation oncologist who is bombarding cancer cells with free radicals in an attempt to end their lives, perhaps it is not in my patients’ best interests to bombard them with sugar cookies (with or without pink frosting).

Sugar is to breast and other cancers as cigarettes are to lung cancer…

Our societal connection with poor food choices along with their promotion within our hospitals and cancer centers must end. As cancer centers, we should be promoting the message of a healthy diet and lifestyle in the hope that this message will permeate throughout the community. If we are the ones promoting the same unhealthy behaviors that can lead to cancer diagnosis and worse outcomes, how do we expect a change to occur?

And by the way, you won’t find any sugar cookies at my cancer center.

Because I not only voice my opinion to rant, I will be sending this to Phil Stover, CEO, Medical Oncology and Hematology Associates and will await his response.

pstover@cancercenterofiowa.com

Cheers to good health, good choices and creating positive change.  ~Sarah

 

 

 

 

 

22 thoughts on “Treatment And A Long Overdue Rant

  1. YES! Best. Rant. Ever. If I know anyone who can push for a desperately needed change, it’s you, my amazing friend! Mind if I share on Facebook? EVERYONE should read this. And then, as always, make their own choices, for better or worse.

  2. You should be pissed. Everyone should be. Very well written. And thanks for inspiring me to end my 15 year long sugar bomb for breakfast habit. You make a difference for a lot of people.

    1. Dammit! Unexpected tears. Thanks Dr. K for all you do and for being you. You will never realize your full effect on folks but we are all better for it.

  3. Thanks Sarah! Sometimes you have to raise your voice to be not only heard but understood. I’ll be sharing your words.

  4. Agree completely. It is amazing to me how the metabolic connections between our diets and diseases (cancer among them) are not emphasized more in traditional education. To claim malpractice is severe, in the sense that it is wholly within the standard of care to feed cancer patients whatever they want. The goal has long been to keep weight on patients because a rapid loss of weight has been linked with poorer outcomes. But jumping straight to cookies and fruit juice misses the point entirely. We need to make metabolic therapy an integral part of modern cancer care, starting with funding the science that needs to be done to do just that. Too bad we have an anti-science President hell bent on stripping funding sources from those projects.

    1. As a medical physicist, you have an interesting perspective, Oliver. Thanks for chiming in. I think the root of this is deep. Nutrition and the connection to health and more specifically to cancer and also treatment, is not well understood by most doctors and not properly addressed in their education. I get very frustrated by the condescending, uneducated responses I get from my doctors about nutrition and usually just blow them off and do what I think I need to do, anyway. Keeping weight on patients? Sigh. By the time they’ve reached cachexia, it might be past a nutritional intervention. Before that? Lots of interesting information on why patients lose their appetites but giving them permission to eat whatever sounds good is not in their best interests, either. Fasting has some great benefits but it scares the shit out of many doctors who aren’t well versed in the topic. Ketogenic diet? Same thing. Most doctors don’t even know what I’m talking about. Non-toxic options that I can do FOR FREE are of great interest to me and would love for doctors to understand them and *gasp* even think about recommending them. NOT ONCE has a doctor recommended a whole foods, nutrient dense diet to me. When I bring it up? They say “must be working for you, just keep doing what you’re doing” at best. At worst? “you leave the treatment to us and just eat whatever you want.” I have some very compassionate doctors that I like but I think they can be very naive. Cancer and cancer treatment is big business and business is good, unfortunately. Seeing them offer that junk in treatment rooms makes me think the people involved in these decisions want a revolving door and I would say the doctors employed there are complicit. And yes, the anti-science President is NOT making anything better for any aspect of this. Don’t get me started! 🙂

      1. That reminds me of a question I was going to ask, but forgot. Do you keep a strictly ketogenic diet? Are you tracking your blood work to make sure you are in ketosis? Do you take supplemental exogenous ketones?

        Ok, that was ‘questions’ but you get the point….

        My hackles only come up when people start throwing around “big business.” I have never encountered anything anywhere that would suggest that (most) professionals are actively suppressing or ignoring anything that they think is a genuine and significant improvement in outcomes. I hear that argument all the time about why we don’t support homeopathic remedies, or other non-western approaches. People accuse us of being money grubbers but fail to recognize that it is a lack of evidence that is the problem. That doesn’t mean that healthcare professional aren’t missing something really important (and I think metabolic therapy is one of those), but it isn’t intentional just for money. At least, that’s my take.

        As always, thanks for sharing your insights. Very interesting.

      2. Thanks, Oliver. I was not pointing fingers at you but can understand why it would feel that way. I don’t think any of my doctors are money grubbers but I get the impression that they are not making a lot of the “business” decisions. They likely got into this profession to help people but I think there are some conflicts of interest. I think there is a LOT of room for improvement in even the most basic of approaches. I do not follow a strict ketogenic diet. I trend towards low carb and dip in and out of ketosis. I have a glucose and ketone monitor and periodically check both levels. I fast for 2-3 days leading into chemotherapy to maximize ketosis and make sure the cancer is extra hungry to gobble up the chemo and minimize side effects. I have exogenous ketones and supplement with them periodically. Unfortunately, I’m doing all of this at my own hand. I’ve found no one with more knowledge than me that is willing to provide any guidance. I also realize that glucose is not the only cancer fuel. Glutamine, for example. Can cancer eventually adapt to fuel on ketones? Maybe. But we know glucose is an easy fuel. I started learning everything I could in 2004 and quickly realized doctors are waiting for evidence and studies and I get that. But I can’t wait. I have found some scientists and researchers who have some strong supporting evidence for much of my approach which is why I adopted it, plus it’s non-toxic with no real downside for me. Dominic D’Agostino, Thomas Seyfried, Travis Christofferson and of course the Warberg Effect and Coley’s Toxins have all influenced me. Gene theory has serious limitations but the metabolic theory provides some interesting potential answers. I don’t think any of them are a silver bullet so I do the best I can while I wait. Also, hyperbaric oxygen chambers. Non-toxic but no one around here will administer. This facility in Istanbul is having some impressive results with many of the “therapies” I mention. http://chemothermia.com/about-us/

      3. D’Agostino was the name I was going to mention. I’ve read some of his stuff, but only heard about this whole thing within the past year. And, tellingly, I did not learn about it from within the cancer care profession, but from outside — so everything I’ve read has been on my own. You clearly are already far more expert than I am in this area.

        I’ve toyed with the idea of keeping ketogenic, because even without a cancer diagnosis, the benefits seems to be pretty striking. And as you said, the downside seems to be minimal (or non-existent). The sense of urgency you describe is entirely understandable. I’d be right there if I were in that position, and I applaud you for informing yourself. I do think this is one of the areas where that conflict of interest is certainly present. Or maybe, lack of motivation. Until we pay people to incorporate metabolic therapy, there is no driver to do that. And we won’t pay for the therapy until there is evidence that is is sound practice. Sort of double-edged. That is why public funding for research like this is so important. Either way, like you said, no sense waiting for that to happen….

        Have you read the Seyfried book “Cancer as a Metabolic Disease”? (Sorry to keep pestering you, but I am very interested in this topic.)

      4. Dom does some GREAT work. I’ve read everything I could get my hands on from him. I’ve listened to numerous podcasts with him and also with Seyfried. Game changing for me. I have not read Seyfried’s book. I was going to order it on Amazon until I saw the triple digit price and was willing to forgo when I realized that Travis Christofferson wrote Tripping Over The Truth, The Return of the Metabolic Theory of Cancer and it was a much easier, non-textbook sort of read. He wrote it based on information Seyfried and D’Agostino provided with an urging from Robb Wolf as the impetus. All brilliant minds, in my opinion. In fact, Robb Wolf put me in touch with him and I got an advance copy of the PDF before it was released. Great human beings.

        As an FYI, my oncologist didn’t know what ketosis was. I had to explain that it was NOT ketoacidosis and he had never heard of the term ketosis or ketogenic. Sigh.

      5. Awesome. Thanks for the tip. I just sent that book zinging to my Kindle to take a look at.

      6. Zing! Great discussion, Oliver. Thank you. It’s rare for me to have this level of conversation also have it welcomed. Let me know what you think of the book.

  5. Saw the same thing when sitting with my mom during her chemo sessions…..I attributed it to the fact that the revenue hospitals are receiving is now tied directly to patient satisfaction among other things so they are treating the hospital like a hotel and patients like customers who have to be placated into giving high patient satisfaction scores.

    It’s not right, but seemed like a sad reality.

    1. That’s an interesting thought, Rob. Patient satisfaction is playing a bigger part, for sure. I go to Mayo Clinic and they consider patient satisfaction in the doctor’s compensation. I’m told they are not paid by how many they push through. I get a survey about every other time I’m there asking pointed questions about my experience, usually asking about ease of navigation, wait times, making sure all my questions are answered to my satisfaction, etc. They do NOT ask about any “hotel” type features and it would irk me if they did. That is NOT why I’m there and would not provide a better experience for me. I want competency of doctors and efficiency of staff. Could they have better food in the cafeteria on site? Hell yes. And better options when you’re an in-patient? Absolutely. But I digress. Trying to keep my rant to one topic. 🙂

  6. Thank you Sarah for posting this. You taught me things I did not know. I’m going to share it, so maybe it can help others too. Bless you for trying to keep others informed.

    1. Thank you for your kind words, Tammy! It really touches me that others find it valuable and educational. Hopefully others can learn from me sharing my experience.

  7. Yay! I totally agree! I’ve been keto for a year now and feel so much better without sugar. Slowly weaning my family back also.

  8. The health of our nation may improve if we start teaching good nutrition instead of dinosaurs and sentence diagrams in school. Food choices are consumer driven.
    As a nurse, not once did I have a physician inquire about a patient’s diet.

    1. I am not surprised to hear doctors not inquiring about patient’s diet. When I bring it up? At best, they listen and maybe I get a “keep doing what you’re doing” comment. At worst? They tell me what I consider to be good nutrition, not healthy or even dangerous. Learning nutrition at school? If they were learning ACTUAL nutrition and not some food pyramid disaster, I’d be for it. But schools and government, at least in the US, have yet to even come close to getting this right. You have to look no further than school lunch. Disgusting.

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