Cancer Info with a Grain of Salt

When I posted a couple of weeks ago about research that shows the potential benefits of melatonin as a cancer-fighting agent, I tried to emphasize that even though you can find a scientific study that suggest promise for a given treatment, that’s not enough to run out and take it yourself.

Your medical team still remains your best source of information. They’re not only reading and processing info from clinical studies, they also have the inside scoop on what actually works on a long-term level. Not to mention that they’ll be able to prep you for treatment side effects.

I was reminded of this by an article that appeared in Cancer Currents, a newsletter from the National Cancer Institute at the National Institutes of Health, entitled, “Addressing the Challenges of Cancer Misinformation on Social Media“. (Note: the National Cancer Institute has an information service you can reach out to with your cancer questions: Cancer Information Service.)

So you found some miraculous cure on social media. But if it sounds too good to be true, it likely is.

Unfortunately, people are turning to questionable sources–such as the oh-too-familiar Dr. Facebook or Dr. Google–for medical information. This has been glaringly apparent throughout the course of the COVID pandemic, but it certainly includes people looking for information for serious diseases like cancer. Often, the individuals most are risk of succumbing to “shocking cure doctors don’t want you to know about” misinformation are also the most vulnerable: those who are diagnosed with late-stage or particularly aggressive cancers.

Who can blame them? When things look desperate, we all hope to find some “secret” that has been tucked away somewhere. And that’s not without precedent, as there have been old drugs repurposed for a disease that work surprisingly well. So it does happen. It’s just that the first place that information pops up is not on someone’s social media page, and it’s extremely unlikely that the “cure” will be a special juice cleanse or your dog’s flea medicine.

Admittedly, I am intrigued by claims that pop up in less-than-scientific places. However, my first trip to the internet is to review whatever current research is available on the subject in the National Institutes of Health’s PubMed, and to see how reputable the journals are in which the studies have been published. Again, the Cancer Information Service would be an excellent resource for those who would like succinct info without wading through research papers.

No matter how tempting it may be to believe that some great cure is tucked away on social media, make sure you get your oncologist’s approval before you start any treatment.

Hands down, your best line of defense again bogus claims remains being a informed patient and educating yourself about what exactly makes a study trustworthy. Who is funding them? What does the methodology look like? A claim from a case study that blood cancers can be cured by rubbing toothpaste in your eye that appears in the National Enquirer and was funded by a toothpaste manufacturer…well, I don’t think I need to tell you on how many levels that’s a non-starter.

But for the sake of illustration, here we go:

  1. It already sounds fishy and harmful.
  2. “Case study” means that only one subject was studied, so the results cannot be generalized to a larger segment of the population.
  3. National Enquirer is not a reputable, peer-reviewed scientific journal.
  4. The funder of the study will gain financially from the outcome, which means there’s a confict of interest.

Certainly, the “study” above is an easy call. (For the record, I totally made it up, but if it sounds like something you might have seen on social media, well, there you go…)

But it’s not always that obvious. And often the info comes via well-meaning friends and family who are desperate to help. Please, consult with your medical team before you try anything out of the ordinary.

If you’ve honestly gotten to the point where you feel your team is not operating in your best interest, get a second opinion. If at all possible, change to a different oncologist.

But if the second (or third or fourth) opinion of a reputable and experienced cancer health professional echoes the original opinion, and no one is on board with the treatment you want to try…it’s time to ask yourself why you are so determined to go against the advice of experts, and reconsider for your own sake.

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It is unfortunate that many people hold doctors in contempt. As someone with a sibling who is a physician, I can promise you that most doctors do not enter the medical field because they think it’s a “get-rich-quick” scheme. They do it because they are driven to help people and they put in long exhausting hours under stressful conditions to do so. Again, if you feel that your doctor is not listening to your needs, then please seek out another qualified physician.

Releasing Rigidity

I wanted to revisit the issue of having an important thought pop into my mind in the midst of a meditation session, and how I’ve ultimately allowed myself to deal with it.

For some background: in mindfulness meditation, we are taught to let go of thoughts and focus on the breath. But with all the cancer treatments that I’ve had, memory is collateral damage. During the course of a regular day, I have thoughts go POUF in the ether — and sometimes they’re important things that I really should remember. Ironically, I’ve had them return to me while my mind is still and uncluttered, as during meditation.

I’ve been told that during meditation if a thought that you need to remember comes up, you should make a “mental note” and release it, and then come back to it once your meditation is over.

If an important thought comes up during meditation, you better believe I’m writing it down!

Well, lemme tell ya, that simply no longer works for me since there’s no guarantee that a “mental note” will work. When that thought pops into my head, I’ve decided to pause my session and write it down.

You could say that I’m not supposed to do this, but I know that this is the only thing that works for me — I can record the thought and not spend the rest of the session worrying that I’m going to forget it, which might otherwise consume the remainder of my meditation.

I feel that mindfulness teachers would agree with me that mindfulness should flow out of your situation. It works with what you need, allowing you to appreciate this moment. In the Mindfulness Based Stress Reduction (MBSR) classes that I took, we were always told to take care of ourselves, to make sure that we were comfortable and secure.

It became apparent to me that I wasn’t going to look like the meditators that we see when we google an image of one: seated in lotus position, palms up with thumb and forefinger touching. That wouldn’t be conducive to a prolonged session for me.

This will not be me anytime soon.

While I do own a meditation cushion, I prefer to sit in a chair during MBSR workshops, since my joints ache and legs go numb if they’re crossed for too long. And when I’m home, sometimes I’ll lie on my back during meditation with my legs up a wall in the pose called Viparita Karani. This is very soothing for me because, again, I have problems with my feet, and this not only helps with the weird numbness but also lessens the chance that I’ll experience restless leg syndrome.

I believe that mindfulness is not about living up to someone else’s idea of perfection. Nor is it a competition to see who can meditate in the most uncomfortable position. It is staying present, noticing what is happening right now, in this moment. I can do this much better if I’m not fighting pain.

So I don’t focus on the concepts of “right or wrong”. Getting to this point took some doing because I am by nature a perfectionist. But part of my mindfulness journey has been simply releasing that rigidity of what I think I “should” do and finding peace in doing what is best for me.

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I remember as a young child listening to a missionary priest talk about his travels. He spoke of a little boy tending sheep in a field who had come up with his own prayer: he had a handful of pebbles and was talking to God, saying “one for you, one for me, one for you, one for me” as he made two little piles.

That was the way he prayed, and the priest said that it was exactly the way that suited him. He might not have been doing it “right” according to the teachings of the Church, but he was praying sincerely and lovingly, and that was what really mattered.

Surviving Another Ride in the Tube

During my last oncologist appointment, I was told it was time for a chest MRI.

The last time I had one of those, I was barely holding it together–it had been a couple of weeks since my breast cancer diagnosis an dI was in an emotionally fragile state.

But that was four and a half years ago. This time, I was fine. I thought.

In case you’re never experienced one, the bilateral chest MRI is not particularly comfy. You lie face-down, your breasts hang between two open slots beneath you and your arms are outstretched in a “superman” pose.

I was a bit taller than they expected…things didn’t completely fit.

And you hold that for a specified length of time. I seem to recall almost an hour last time in 2017, but this time it was only a half hour. Which is good, since I had a hard time getting comfortable–based on how the MRI bed was set up, they hadn’t expected me to be quite so tall.

And since I needed “contrast” in my MRI, I was hooked up to an IV for infusing gadolinium. But the veins on my right arm (which is the only one I’m supposed to use) have seen a lot of wear and tear. Yes, they bulge and look nice and juicy. But it’s a lie. Only after some false starts–the first vein the nurse tried was a bust–did we get the IV going.

The MRI machine looked shiny and competently high-tech. I got to listen to spa music through headphones, which is kind of funny, since it’s like being at a spa where they also bang pots and jackhammer while you’re getting your treatment. In case you’re not aware: MRIs are LOUD.

Ironically, there’s something quite positive about that: the percussive nature of the noise has an almost lulling effect–if you let it. This worked quite well with my strategy of meditating throughout the procedure. Breathing was not particularly comfortable because of pressure on my ribcage (again, due to my height and positioning on the bed), so I chose not to focus on it.

The dressing room was cute, but I couldn’t help feeling so alone in it.

Instead, there were many other bodily sensations that I could pay attention to. At times, I could “feel” the MRI in my hips and spine. I focused on the weight of my body on that bed and on releasing tension whereever I sensed it. Compared to the previous chest MRI, I felt a sense of grounding.

But there were little cracks in my composure. I took a picture of the cute little dressing room where I changed and left my clothing. It was lightly decorated with homey touches. At the same time, it looked so empty: my gown on one chair, my belongings on another. Briefly, I felt small and alone.

After unsuccessful attempts, the IV was connected, and I remembered the feeling of expecting that things were just gonna hurt.

After I got home I removed my bandages from the IV arm and looked at the crook of my elbow, and it reminded me of all the pokes that I’ve endured. All the discomfort that I learned to expect and not question if it was necessary, because it always was. And I fought back feelings of helplessness.

It’s not all bad. This time, I had a better grip on things. I wasn’t even thinking about the MRI the next morning when I went grocery shopping, until…

…I saw a call come through from my oncologist’s office. And suddenly my heart started racing. It was a pure knee-jerk reaction. The voice on the other end told me that the MRI looked normal and my oncologist would see me at my next scheduled appointment next year.

It took a bit for my heart to calm down. I hadn’t been worrying about the results, certainly hadn’t expected anything bad, but wow, when that phone rang, it was as if my brain yelled at me, “Time to PANIC!”

This ride in the tube had a happy ending. But there’s no mistaking all the anxiety bubbling under the surface. Try as I might, I am always going to associate these procedures with fear and possible death. Memories of what happened a few years ago are not going anywhere.

And that’s okay. Because even though my reactions to those memories may still be stressful, I can accept that this will be the case and not expect them to be otherwise. And that acceptance is one of the most valuable skills that I’ve learned.