Letters From Cancerland: The Wheatgrass Juice Chronicles
This one is for all of us who live in Cancerland and are waylaid by one too many individuals practicing medicine without a license.
What is it about a cancer diagnosis that suddenly endows people around you with a degree in oncology?
I first became aware of this phenomenon when I was diagnosed with multiple myeloma almost nine years ago. Since then, I have seen it played out in countless settings, including a myeloma support meeting.
The moment someone mentions the word “cancer,” homegrown cancer experts emerge from behind bushes and under rocks. All of these oncologist wannabes are convinced that they, and they alone, know the secret to curing you.
When I was first diagnosed, I was the lucky recipient of more “medical” advice than I could shake a stick at. Usually, I was able to avoid or shrug off almost all of this misdirected "concern.” But every now and then someone would score a direct hit.
My mother, in her stress over a child of hers having an incurable, terminal illness, would call me, sometimes several times a day, to pass along all the important information she had. “Cousin Barney said you’ll be sick from the chemo but that’ll pass. He said the [fill in the name of the drug] will kill the cancer.” (Cousin Barney had been treated for stomach cancer; I don’t remember what the chemo agent was, but it wasn’t one in the myeloma treatment world.)
Or, “I saw Dora at the store, and she said to tell you to start eating carrots. Right now! She knows someone who ate carrots when they had cancer and it went away. Do you want me to stop at the store and get you some?”
Thanks, but no thanks. I know Mom meant well, but I don’t think she ever quite understood just how draining (and frustrating) it was to listen politely to all of the “cancer nuggets” she brought me on a daily basis.
Maybe all of these faux oncologists mean well and are just expressing concern. All the same, I find it stunning that cancer brings out the Dr. Kildares, Marcus Welbys, and Doogie Howsers in full force.
My all-time favorite experience involved wheatgrass juice. (Note: for any of you out there who drink the stuff, more power to you. I’m not impugning anyone’s diet decision.) An acquaintance, upon hearing that I had been diagnosed with multiple myeloma, called me at my office to talk about a nutritional regimen she wanted me to begin immediately.
The diet was Spartan vegan (to libel both Spartans and vegans everywhere) and centered around my drinking wheatgrass juice on a daily basis, in ever increasing amounts, while subsisting on a limited number of carefully prepared vegetables. I believe the first two weeks consisted only of the juice and a vegetable soup twice a day.
She assured me this would cure my cancer and save my life. Starting that moment, she dramatically emphasized, there were to be "absolutely" no fats in my diet either.
"Cut them out!"
I interrupted her monologue to point out that I was in a catabolic state and dropping weight fast. I was in the care of an oncologist. He said I needed fats.
She immediately enlightened me that my oncologist was keeping the cure from me to keep the medical establishment going and what I really needed was to start the wheatgrass juice immediately, with the daily all-veggie soup following that. She would make the soup for me at my home to guarantee there were no illicit fats in it.
I had no interest in a vegan wheatgrass juice diet and said so.
In the way that only someone who is convinced that they alone know the truth is capable of doing, this individual kept going on and on about the diet I had to switch to that moment, ignoring my attempts to end the conversation. I had limited energy as it was, I was trying to wrap up my office work so I could exit the practice, and I wasn't about to let her consume any more of it. So I cut in (again) and said, "I'm done talking." Even then she rattled on. So I finally hung up abruptly, something I have rarely done before or since.
Three days later, the same severely misguided individual called me back, again interrupting my limited office time. Her tone was a little strained as she explained that she realized she had to respect my decision not to follow her advice and "follow the path" that was right for me. She acknowledged that I was "apparently committed" to following "some medical procedures.” This was said with a faintly disapproving and pitying air, as if I had made a poor choice in a moment of weakness. Then, with a firm, slightly hostile edge to her words, she admonished me not to wait until all medical hope was gone before seeking her help again as it "would be TOO LATE then!"
Well, that was a real pick-me-up.
My response was swift and to the point. "Rest assured that if I get to the point where all medical hope is gone, I will not be drinking wheatgrass juice. Dom Pérignon champagne, maybe, but not wheatgrass juice." And then I gently hung up the phone.
My guest list ever since has been composed of friends who check their medical credentials at the door.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Generally people have good intentions, albeit misguided at times and I have no problem listening to what they have to say. However, when someone believes that doctors are conspiring to keep people sick so that they can profit from human agony, I draw the line. There is no reasoning with someone like that as they are way beyond thinking sensibly. The only thing you can do is back away and if pushed tell them you respectfully disagree and do not and will not discuss it further with them.
Ron
HI April, As if dealing with cancer wasn't enough stress, some people do try to impart their philosophies of diet, exercise, etc on the patient. I have had to brush well meaning people off also, especially when they told me that all chemotherapy is 'poison', or that sugar will feed my cancer (directly, not being metablolized through the digestive system apparently). It's quite aggravating, but I like your approach of just limiting your friendships to those who are more intelligent and understanding of you.
April,
You are spot on!!! Vegan diets, juicing, various odd ball supplements, and, of course, recognizing how the doctors and drug companies are keeping us sick for their financial gain !!! I love telling them that my father, grandfather, two uncles and three cousins are doctors! This backs off some of them.
We need a t-shirt:
UNDER GOOD TREATMENT
NO ADDITIONAL ADVICE REQUIRED!
April, I loved this column. In the 6 years that I have been dealing with MM I've had many well intentioned people telling me I should take this vitamin, that supplement, etc. Admittedly, I'm a little sensitive but I always feel like the unspoken message is they don't have cancer because they know how to keep their body tuned. Somehow, I must be at fault. Most recently, I was supposed to get ahold of a Dr. in CA who could test me for different chemo resistances. Some time before that I was supposed to go to Mexico and drink a special tea that would cure my cancer. I like the T-shirt idea from Jubyannne. I may have to get one of those. Great column!
This really hit home for me. A few friends and family members have played armchair oncologist/dietician with me and I just listen respectfully. One even argued that I didn't have cancer because I looked too well....wish he was right! They mean well. Bottomline---carfilzomib, not curcumin, etc., chopped away my myeloma and that is the truth.
April,
I and I believe the majority of cancer patients have experienced this same phenomenon after their cancer diagnosis. I can remember seeing it as an early child with my grandmother, who was very fearful of getting cancer someday and was always talking about herbal cures and such. I find that most of the homegrown experts have very little background or education in the sciences.
I got hit with a lot of advice on diet and herbal cures and such and recommended books to read on the subject after my diagnosis. I discounted any that pushed a position that modern medical science will only kill you and diet alone or some herbal cure is your only chance at a cure. I think there has been a broad consensus in the medical community for decades, though, that eating a healthy diet can help prevent cancer and a lot of other ailments. For us, that ship has already sailed though.
But I found one book that took the position that what you eat during your treatment can work with or against the cancer treatment regimen and correspondingly impact the treatment outcome, and that the medical community general does not address diet and eating as part of the treatment process along with the chemotherapy, radiation etc. I think there may be some merit in this view.
The foods and diet in the book did not seem to be anything radical, it still seemed to be a good diet for anyone regardless if they are undergoing cancer treatment or not. It would certainly make sense to try and eat healthier during treatment to help the body endure the stress. But like you during my treatment I lost 50 lbs. in less than three months and was underweight. At that point any calorie was a good calorie.
Like Ron, the most concerning thing for me about the homegrown oncology experts are the ones who try to impart their beliefs and fears into those of us with a cancer about broad conspiracies in the established medical community to withhold and hide treatments for profits or some other hidden agenda against the public good and advocate seeking some questionable alternative treatment of unproven effectiveness. This can lead people to avoid seeking what effective treatment may be available until it is too late to have any impact. I have had relatives who have spent significant sums of money on quack doctors going down this route.
April, how nice to have so many concerned relatives and friends. My advisors dried up after the first year of my seven with MM.
I think they see me doing much better than they expect, so now just ask me how i feel!
... Dave Huether
Loved your column. It can be a mind field sometimes. I especially like this on my neighborhood said she wishes we would take a chance and come to her church people would love us or if I really believed anyone can be healed. I know all was said by people who believed what they were saying but when you are in a fight with incurable disease I'd rather just see loving actions from the bright side not the dark side.
Way to go April! While we can't choose our family members, we can decide who our friends are. Heartbreaking as it can be, there are times when we must let go so that we can live our lives with joy and in the company of friends who care and understand.
Great article, April, it made me laugh, which is hard to do these days. I have fallen for one supplement, "Curcumin". Only because studies at have some it may have effectiveness against multiple myeloma. But, like you, I have heard about all these cures for me from friends and strangers. I think my friends and family are only trying to help.
Your article made me laugh, April, but was also appalling at the insensitivity. When I was diagnosed, I forbade my parents from telling everyone that I have myeloma (which is their usual mode of operation). I specifically said that I didn't want to hear what the latest maven said I should do, unless that person was currently being treated for myeloma. It worked and saved me from a lot of well meaning but outdated or flat out uninformed advice.
Jubyanne - great t-shirt idea!!
By the way, I have four Life is Good t-shirts. It's a powerful reminder that we are STILL HERE.
Which wheat grass are we talking about? In the great plains alone there are 6 species of wheatgrasses.
Jim, a retired certified range consultant
April, what a wonderful article - so true. From the replies you are getting I'm sure we all have a couple of stories that we could tell. Two really stick out in my mind.
I was in day oncology getting zometa and my business phone rings, I had to explain to the caller that we were no longer operating due to my current situation. Then she proceeded to tell me that the chemo would kill me and I was obviously eating the wrong foods - coz that's how you get it. WOW. Methinks I wouldn't want to do business with her :).
The next story relates to a close family member suggesting I take an elixir. I actually gave in, I couldn't stand the "It has been proven", "don't you want to get better" "If I had cancer I would...." I felt like being a kid, stuffing my fingers in my ears and singing "La La La, not listening". I drank the stuff. BUT one of the active ingredients in it was Olive Leaf Extract. I then took Olive Leaf Extract by itself for 3 months, first asking my pharmacist if there was any interactions with it and my medications. Not that they knew of. Where was my brain at this time coz it certainly wasn't in my body. Olive Leaf Extract is used to boost the immune system. (Didn't get any colds while I was taking it) It just so happened that the time I took Olive Leaf Extract was the time my paraprotein started increasing again even though they doubled my medication. When I stopped taking the extract low and behold my paraprotein started dropping again. I have since found out that it interferes with some immunosuppressive drugs used in the treatment of AIDS.
If people (it is usually strangers) want to give me advice about supplements I tell them that story and then ask what is the active ingredient, what does it target, what are the side effects......
Jubyanne, Love the T-shirt idea.
All the best,
Libby
Great article! I could really relate to many of your experiences. Thanks for sharing.
Great article.
I have the opposite issue and would love some input from the readers of this column. I have kept my multiple myeloma a secret from my mother and mother-in-law (84 and 73 respectively and both excessive worriers, especially as we have two very young kids) since diagnosis in Feb and treatment in April (VRD). No one can tell that I go for treatment regularly. I have only told siblings and a couple of friends and colleagues. I run a business and have not told clients (they are Fortune 500 companies that may not want a sick supplier).
I may have an auto or allo SCT in the coming months, and then the cloak will be lifted for . I don't get the daily calls from relatives nor do I have the guilt of robbing them of joy with this news. I do feel guilty not being truthful and not being to turn to a parent to share this.
Any advice? Do I tell now or right before a transplant (if I even have one). Since this is solicited, all advice will be welcome. But no wheatgrass potions please.
April--Thanks for the good humor.
David--You will probably get more responses if you post your request on the forum section of this site. Personally, I am not in favor of keeping close relatives and friends uninformed of a serious illness. If their responses are bothersome or inappropriate, you will have to deal with those issues as they appear. You may be pleasantly surprised at the support your loved ones offer and how that gives you some measure of relief.
David, I was about to say the same thing that Denise said: post your issue on the forum. There are people out there who have done the same thing--kept it quiet and secret. My guess is they will be glad to share their experiences with you. I was just the opposite: when I was diagnosed, I threw an announcement party 3 weeks later.
As to everyone else, your answers made me smile, made me sigh, made me laugh out loud.
Loved your column - - it made me smile. I experience the same phenomenon, with well-intentioned folks giving all kinds of advice. I pick and choose what to do. And no, I've not tried wheatgrass!
April, I loved this! And I think Jim's droll question about which wheat grass was a hoot! Thanks for the levity and wisdom.
It seems odd to me that the alternative therapy folks generally don't sound very stable. There's a lot of defensiveness, anger, paranoia, alongside all the anti-doctor, anti-drug, anti-hospital and anti-transplant ranting.
April, thank you, thank you, thank you! This is a great article, and you helped me stop feeling guilty about something.
Before I started induction phase treatment at the end of January, I had breakfast with an old friend. During the breakfast, he told me the cure is to cut out all sugar from my diet. As much as I like sweets, ice cream, etc., that alone would have killed me faster than multiple myeloma. He harangued me and made a breakfast that I'd been looking forward to fairly unpleasant.
Then to make matters worse, a week or two later he emailed me a zipped file with 20 or so articles and web links about cancer and sugar. And at the end of his email, he asked me to let him know what I think. He'd obviously put a lot of effort into collecting this stuff for me, so I felt like I owed him some kind of civil reply.
I spent the induction phase looking at some of the material, then trying to decide what I wanted to say in my reply to him, then feeling more and more guilty that I hadn't replied yet as weeks turned into months. Eventually it came to be time for my SCT, and I had bigger fish to fry. I still haven't replied, so I guess by now he knows what I think. And he hasn't called me for another breakfast yet either.
This is great. My wife sent me the link to your article, and it really made me chuckle. I was diagnosed in March of this year, and I'm gearing up for my stem cell transplant in October. Even though I'm just getting started in my new life, lots of friends have come forward with the solution or cure. I just smile and thank them; it keeps me somewhat entertained. I love to read the notes from my fellow club members. Life is very brief with or without multiple myeloma and there's a lot of positive energy out there. "Thanks" to all of you. Now that this is staring me in the face, more than ever I see the humorous side of things.
Life is a great adventure.
David -- I hear you. I have been in a similar boat for 4 years. I am glad I have kept it a secret from business associates. When you go bald, you tell them it's Hodgkins. 90+% survival rate. No problem.
Great article! Funny too (to read, maybe wasn't funny to deal with).
I made the mistake of having a friend of a friend hypnotize me to get rid of the cancer. I pretended that it sort of helped. Mistake! The next time he asked, I had to hurt his feeling and tell him that hypnosis is for some people, but not for me.
One of the best parts of having cancer is that you can justify being selfish with your time. You can err on the side of doing "what you want", rather than "what you should do".
I find this all quite disturbing the article the comments which some of which are at least written by the same person using a differnt name,, un believable but in all likely hood true.
I can say for sure I have never come across such a concentrated negative strangely defeatest attitudes towards the infinite recovery potentials held within humans.
If the science is not enough to save you all from the trickery of this world then I do not know what is.
I understand the notion of the well meaning so called doo gooder, I myself am on that track so to speak having just found out about a relative who has just been diagnosed and as a result it has propelled my ongoing research into health to the specific area related to this persons cancer condition.
And all I have to say is this world has more magic to offer humans then is generally known, it is easy to dismiss stories, advice and information but if you dismiss the science, you may as well beleive in santa claus.
There is much to be gained by accepting everything and nothing, only then can you really see the well meaning do gooder from a person that may acutally be able to tell you how to save your life or at the very least improve its quality.
What I mean by accepting everything and nothing is that to understand truth you must be prepared to accept lies as truths so that ultimately your intuition residing in that human gut instinct will show you the real worth in any offering from external sources.
I know not everything you read is true, I know not every cure offered will actually cure, I only need remind you of the drug companies selling heroin to cure opium adiction to perfectly ilustrate this point.
That being said if a person comes to you and offers help/advice regardless of whether you know them to be a well meaning doo gooder as it were, maybe , just maybe its worth listoning and making your own, more informed judgements because some of these people might actually have the science to back up the advice.
There is quite simply always another way, otherwise there would just be the way, that is why I believe you should always make time to liston if a person is trying to save your life and then cross if off as nonsense once you've explored the science behind the claims to see if it is a well meaning whisper, easily lost in the breeze or perhaps something which in someway may help.
Any advice concerning magic fix me pills should always be questioned/easily brushed aside but anything to do with nature, with natural order should at least be concidered because unlike humans nature does not try to systemactically wipe humans out where as humans easily dismiss the life that gives us life in more ways then one.
Thank you, April, for an interesting and amusing article. I always enjoy your musings.
In the 18 years I have lived with multiple myeloma, I have had a few people offer "cures", but nobody has been as persistent as your Wheat Grass Person. Do such people not realise the stress they cause? Do they not think how damaging they are to people trying so hard to deal with treatments and remain positive in their outlook?
My response has always been "thank you, I will ask my doctor about this as NOTHING goes in my mouth without her blessing". I don't know if people here are aware (for example) that taking Vitamin C whilst undergoing treatment with Velcade is just not on. It apparently hinders the actions of Velcade. This is just one example that I am aware of and am sure there are countless interactions I know nothing about.
My line is "stick with the science". Yes, eating healthy is good for all of us and as MM patients we are no different in that regard. But to think some alternative way of eating can "cure" an incurable disease when science can't, well I can only say that here lies madness.
April, loved the article. As for Jason, your opening comments saying all of the comments to this article are the same person I find ridiculous. The rest of your comments I just have the desire to even argue. I lump you in with the Wheatgrass Person.
Hi April,
Excellent article.
In January 2014 my husband was diagnosed with MM at the same time he suffered a life threatening pathological fracture of the C2 vertebra. He also has fractures in other areas of his back. He was immediately hospitalized and remained there for a month. As we were desperately trying to process all this, we began to be inundated with recommendations about miracle foods - one was to drink green tea - which will interfere with chemo.
Thankfully, my husband and I are on the same tract and tell people that we follow the 'rainbow diet', which is just a good healthy diet with lots of colorful veggies and fruit. Interesting I was going to inquire about all the food recommendations when I came across this article.
Everyone is entitled to follow what they believe to be true; and yes I believe everyone is well intended.