My life on Xeloda

The first cycle of Xeloda went swimmingly insofar as I experienced few side effects. However, I did not think it was working. I still felt like I was drowning. The fluid pushing against my heart wall would wake me at night as I struggled awake, gasping for breath. So I asked for more. And I got it.

The first week of cycle 2 was fine. Day 6, I went for my usual 5-mile run/walk (more walking than running now as I was so short of breath) and came back with a 2-inch diameter blister on my right foot, around the toe area. That area was easily bandaged so I went for another 5 miles on Sunday. This time, I was not so lucky. The ball of my left foot turned into a giant blister. So I bandaged that and yes, went out again on Monday. I can see you shaking your head. As I read this, I am shaking my head. Now both feet turned purple and I could not get a shoe on and this was a problem. I was planning to present a paper at a conference in New York and presenting it in slippers is not an option so I called the doctor.

I had to take a break from the Xeloda for the rest of the 2-week cycle.

New York was a blast. I attended the conference, saw my son, ate wonderful food and went to a Broadway show, Something Rotten. I also walked some more blisters into my feet. Bandages and Band-Aids are my friends. I got back on Sunday night so that I could run/walk a 10k on Monday. The nurse had told me I could not race it so I decided to interpret that literally and just take it at a walk/ run pace. I didn’t race it exactly. However, now I really have little skin left on my feet.

Why is treatment for breast cancer still so primitive? There’s an old Bing Crosby song called, Brother, Can You Spare A Dime? Every time I am reminded that I am drowning in this breast cancer tidal wave, I wonder who will spare, not a dime, but a line attached to a life preserver.

In 2012, 521,900 people died of breast cancer. That is 1,430 people every single day and every year that toll rises. When 1,500 people died in the Titanic disaster, laws were changed so that a shipping disaster of that magnitude could be prevented from happening again.

In 2011, Susan G Komen allocated only 15% of its funds to research for breast cancer. That 15% includes all research, not only research into the biology of cancer and treatment. There is no Race for the Cure. What would be the purpose of a giant organization grounded in ending breast cancer if breast cancer actually just ended?

Almost all breast cancer research is aimed at preventing it returning and for all the progress that has been made, it is like holding up your hand and telling the tide to not come in.

When people talk of progress, they are inclined to talk in anecdotes. I am alive because… stories. However, some facts to bear in mind are:

1975: The 5-year survival rate for breast cancer was 75.2%

Now: The 5-year survival rate is 89.2%, but 83% at 10 years and 78% at 15 years which is not statistically different from the 5-year survival rate in 1975, especially if one considers the over-diagnosis and over-treatment now. For African American women, the 5-year survival rate now is only 79%.

In 1975: 30% of patients were diagnosed at Stage III or IV. Staging was not accurate so more women may have been Stage IV at diagnosis.

Now: 13% of patients are diagnosed at Stage III or IV.

The 5-year survival rate for Stage III is now 72% and the 5-year survival rate for Stage IV is now 22%. Both these are lower and far lower than the survival rates of 1975.

As long as survival rates are measured by being alive after 5 years, we will never know if early detection means that we are living longer knowing we have breast cancer or actually living longer.

When women like Sheryl Sandberg (in her book Lean In) write things like her grandmother beat cancer, they reinforce stereotypes that beating cancer is a matter of personal choice. They ignore the desperate need for research to cure breast cancer for those who are initially diagnosed with terminal breast cancer and the 30% who will see the cancer return and become terminal no matter what they do.

No wonder treatment is still so primitive.

Buddy, can you spare a line to save us?

The TSA and breast cancer

 I spent a hectic weekend in Seattle, seeing the sights with my husband and daughter. All the time, I wondered if this would be the last time. As with many women at this stage, I do not look sick and I try my damndest to not act sick. This is especially important when flying. I have about as much chance (or less) of having a medical emergency on board an airplane as the next person but I have not forgotten this incident and its warning to not look sick http://time.com/3813516/elizabeth-sedway-alaska-airlines-cancer-kick-off-flight/

It seems, however, that terminally ill patients have a hidden homing beacon that is picked up by officials at airports with the very specific agenda of making your travel even more miserable. Intellectually, I know that anyone can be singled out but when we are balancing our disease and a normal life, being singled out feels catastrophic. Airport screening after breast surgery is a tale from Hell. Have you noticed that breast cancer organizations have not stepped up to help here? To circumnavigate this problem and enable me to pass through security without being treated like a drug dealer, I ponied up the $, did the background check and got a Trusted Traveler card.

I have sometimes had to have extra screening for explosive residue on my hands etc. That, in and of itself, is a little disturbing. I mean, are they saying that their detailed background checks are not reliable? I’d have a bit more confidence if it wasn’t for articles like http://abcn.ws/1Ks0Af7 and http://bit.ly/1EVV1o8. However, TSA, knock yourself out.

Seattle airport (seatac), however, decided I needed extra special screening with the full body scanner. Well, yes that is not going to happen after my breast cancer surgery left me unable to raise my arm above my head. Now, I bought myself a grope (er, pat down).

• Off with your shoes and put them through the scanner.
• Don’t touch your luggage. Translation: You are not allowed to retrieve any documentation
• Would you like a private screening? No thank you. I need witnesses.
• Anything hurt or sensitive? How do you answer that question when you have metastases in your spine, hips, pleural cavity and liver?

I call over the supervisor and ask if this is really necessary. I have already passed a background check, walked through a metal detector, fly about twice a month, and had nothing in my luggage to cause alarm.

She assured me it was. I was selected at random. Meltdown time. The poor screener doing the pat down was now also trying not to cry with me. She kept apologizing. I honestly think she was too terrified to touch me in case I broke.

I complained of course. I got a form letter back saying (in essence)  that they can do what they like.

I actually feel less safe knowing the TSA is wasting resources to protect the skies by groping triple-checked, chemo-toting one-breasted women. 

Breaking the fragile shells we build to protect ourselves

 “Nobody knows the trouble I've seen

Nobody knows my sorrow” Spiritual

I listen to the Louis Armstrong version of this spiritual often. It soothes the troubled soul at the especially trying times at night, at hospital visits and at airports.

At night, I have this recurring nightmare that a grate is pushing down on my chest and I’m struggling to breathe. I wake up gasping for air. My heart is racing. I have to sit up until my breathing and heart rate is somewhere near normal again. The fluid pushing against my heart wall is not actually dangerous, it is just uncomfortable. I can’t breathe if I lie on my right side and I feel short of breath when I run. Of course, I cough when I lean forward.

I have completed one cycle of Xeloda but don't think it's working so I asked to increase the dose. I'm now at the maximum. I'll deal with the side effects, just help me get enough air.

There is a bit of an imposter in all of us. We say we are fine when we are not because that is the convention. I pretend to myself and others that my life is normal, but the shell I surround myself with is incredibly fragile. It shatters regularly at hospital visits because this is where I hear the bad news, fight to get my chemo and am crushed by the suffering of others. 

My fragile shell is sometimes shattered when I try to live life furiously. The conflict rages on between living life furiously and just living life. I have the endless battle of the spirit is willing but the body is not able.

The Circle of Life

April brings spring and new beginnings. The daffodils and snowdrops are flowering. It is the time of the year when I was born. It also now signals to me that I may have had my last good year. My oncologist has started to talk about months rather than years left. My circle of life is closing too quickly.

Those of you who follow me on Twitter will know that I washed out of the Vaccine trial. My scan at 12 weeks showed a small amount of progression in my liver. My bones were quite stable and have been for the last two scans but it’s my liver that has my oncologist jumping up and down. It was not as though the immunization did not work, it just did not work well enough. So now I am on chemo. I have started taking 1000mg of Xeloda twice a day for two weeks and then one week off. I tried to get on a clinical trial with it, but I did not qualify. My C-Reactive Protein was not high enough.

I was diagnosed with infiltrating ductal breast cancer, Stage III, 10 years ago. Almost exactly eight years later, I was diagnosed with Stage IV, terminal cancer. The median survival with Stage IV is three years. I have had two.

After my first diagnosis, I kept asking why. I was not feeling sorry for myself but looking for reasons. I opened up cupboards and emptied them into garbage cans. Everything had to go. I replaced everything from pots to hand lotions. I was on a mad mission to eradicate every imaginable carcinogen and I did not stop until my imagination was exhausted.

After my purge, I bargained and begged. My daughter was only 13. I needed another five years. I needed to live until she was 18. The oncologist made no promises but I did. I promised to do everything I could to say alive.

I had chemo and vomited for six straight hours. Night after night, I lay huddled on the bathroom floor, too sick and exhausted to go back to bed. In the mornings, I dragged myself up to see to my family and exercise when I thought I could not move. But without fail, I presented myself at the infusion center two weeks later to be pounded into the submission of the bathroom floor. I lost my hair and my dignity. I developed allergies to dairy and anti-cholinergics so Benadryl sent me to the emergency room. I went from surgery to chemo to radiation to drugs that control estrogen. Whatever was thrown at me, I had to suck it up. The cost was the cost.

My daughter turned 18, then 19, 20, and 21. I dared to wish for more. I was there when my children graduated from college. Could I make it to their weddings? I was hopeful. But it was not to be. Finally my Faustian bargain expired. It was time to pay the piper. 

Unless there is something that works for me soon, I will never be the mother-of-the-bride (or groom) and I will never hold a grandchild.

What do you do when you have been told the chips are down and this is your last hand? How do you play it? Do you try to live as you always have or cram the end with a dizzying pile of activities and memories for those you love? Each day we have to balance our energy and health with things to be done. Each day is a set of priorities that can change in a moment. Some days I get most things done but other times I fall dismally short.

I can’t take things for granted any more. Opening the freezer and pulling out the frozen corn causes me to unleash a string of expletives that gets my husband running and waving his arms shouting, “I’ll get it! I’ll get it” as frozen vegetables hit the floor and I hop around holding my burning hands. Damn chemo.

When I die, I will be missed by some but my death will largely be unreported. I did not do anything great and my name will not be in any history books. I’m an ordinary person. I am dying because of the lack of research to find a cure.

I leave three requests:

1) Take care of my family
2) Don’t ever donate to Susan G Komen or buy anything pink in my name and
3) Just say I died or became late. I did not lose a battle.

Living Beyond Breast Cancer convention for women living with metastatic breast cancer

The long brutally honest version from my perspective. 

 We met in Philly for the Living Beyond Breast Cancer convention for women living with metastatic breast cancer on April 11 and 12. For me, it was a tweetup to meet the women who have helped me navigate my emotions as I deal with this disease every day. I did not really expect to get much out of the sessions. Some were helpful and some less so. I sometimes thought that some people giving those talks really did not have a clue. However, I do want to emphasize that this is just my take on the proceedings. I could easily have misinterpreted things as I filtered it through my own experience.

Friday evening:

Reception and welcome. I didn’t know a soul so I registered and ate my fruit salad and went back to the hotel. I was not up to discussing my diagnosis which seemed to be the topic of numerous conversations.

Saturday morning:

Breakfast and meet up with friends. Things immediately started looking up.

Keynote: Promising New Pathways in Treating Metastatic Breast Cancer . Minetta C. Liu, MD

I thought this talk was somewhat useful, but it was too specific. I really was only interested in my kind of cancer. I didn’t find out a whole lot of new information that my oncologist had not already shared with me. I found it depressing when she talked about treatments coming down the pike that we had already missed out on and would not be available for us. She talked about how each subsequent line of treatment has a reduced response rate. She discussed some specific drugs. She briefly talked about the role of immunotherapy and the measles vaccine as new areas of research.

Break out session One:

Don Dizon, MD, FACP Managing Symptoms and Side Effects: Pain, Fatigue and Insomnia
This was one of the highlights for me. I have enjoyed his common sense approach on Twitter and I enjoyed his talk even more. He had a lot of good advice but of course, also said scary stuff.

Pain
He discussed the control of pain and the escalation of drugs to control pain, limit disability and maximize autonomy. He talked about treatment of neuropathic pain (anti-depressants) and inflammatory pain (corticosteroids) as well as the usefulness of drugs such as Xgeva in controlling pain due to bone metastases. He talked about the difference between acute and chronic pain and non-drug treatments such as acupuncture (maybe), massage (increases well-being), exercise (good in every way) and hypnotherapy (no evidence).

He had some good advice for when to make sure you take it and your analgesia is not working. Take it when the pain interferes with the activities of daily living. Balance the side effects with the effectiveness and it’s very important to take the drugs as prescribed. Important in dealing with pain is quality of life issues. Metastases can cause serious issues such as bleeding, cord compression and fractures. Radiation therapy treats pain for many patients but comes with a different set of problems.

When describing pain to your health care provider/s, be prepared to describe:

• Character of the pain – stabbing, throbbing, aching etc.
• Location – where the pain is and what activities seem to bring it on
• Duration- how long it lasts
• Exacerbation – things that seem to make it worse
• Remitting factors – things that seem to make it better
• Associated symptoms – such as numbness and tingling
• Severity – how bad the pain is.

Bottom line is that no person with cancer should suffer.

Fatigue
Fatigue affects approximately 60% of cancer patients and can be debilitating but it can also be reversible. First look for obvious causes such as anemia or insomnia. Procrit and RBC stimulating drugs are a last resort. A psychostimulant (e.g., anti-depressant or ADHD drug) may be effective. Fatigue is a problem when it interferes with daily activities and causes distress.

Insomnia
Insomnia can be primary (difficulty getting to sleep) or secondary (waking in the night). Causes can by physical and/or psychological or even environmental (e.g., too hot or cold or light or that dog sleeping on your bed) issues. It can be the side effect of medication such as dexamethasone or a sign of disease progression.

Insomnia can and should be treated when it is problematic. Cognitive behavioral therapy is one option. You learn to quiet the distractions and stop intrusive thoughts and relax. Physical exercise is important as well as establishing a familiar bed-time routine. Make sure you do get out of the house often. If you can’t sleep get up and do something.

There are also medication options. Melatonin is unregulated so can’t be recommended. Anti-depressants may help. Benzodiazepines are a short-term (1 – 2 weeks) solution.

Conclusion
When facing cancer, it’s all about you.

Then Dr Dizon said something that no one I spoke to agreed with. He said that no matter how hard it is for us, it is more difficult for those watching us die. I can only think that his patients don’t really tell him what’s going on. My husband (a dear loving man) completely disagreed with this as well. It is hard for him to watch what I’m going through but he is only watching. He does not have the endless blood draws, the gastric problems, the scans and the visits. Everything he hears about my illness is filtered through me. He does not have to mourn a future he will not have. He gets to take a day off which I never do.

About this, Dr Dizon was quite wrong. No matter how hard this is for anyone else, it is far harder for me.

Breakout Session Two

I went to: Coping with the Financial Impact of Living with Metastatic Breast Cancer
Joanna Fawzy Morales, Esq.

This was probably not the best choice for me. It was an excellent talk but I still work full time, have insurance and can pay my bills and her advice was better suited to those who were facing a more brutal financial impact.

She works for triagecancer.org which is a great resource and everyone who is impacted by employment and life changes from cancer can get information from there. She discussed our rights and responsibilities as cancer patients and what the new health care laws mean for us. She cautioned everyone to do the math before selecting a health care plan. We will most likely reach the out of pocket maximum every year so don’t try to save a few dollars on the monthly premiums. Decisions like that can be very expensive.

She talked about Cobra (18 months on your current insurance) and who is eligible for SSDI (those who have paid in for 5 or more of the last 10 years). She warned us that 62% of bankruptcies occur for medical debt and 80% of those have health insurance. However, companies can no longer cancel your health insurance, and cannot impose lifetime or annual limits. They also have to cover the routine costs of clinical trials. Premiums can be adjusted for the number of people covered (individual/family), geography, age (to a limited extent) and tobacco use. However, you cannot be denied for a preexisting condition.

She discussed disability insurance but of course for us, that was a moot point.

There are a number of resources available to cancer patients that can be utilized. Never assume you do not qualify:
· IHSS – In home support services
· Disability waiver for bills
· Financial resources: pink fund, ACS, cancer care, giveforward, co-pay assistance, prescription drug, transport (ground and air), lodging, gas, parking and toll.
· Cleaning for a reason
· Food banks

There are a number of webinars and cancerandcareers.org is holding a one-day conference on June 12, 2015

Saturday afternoon

The only session at the conference that I felt personally offended by was the afternoon keynote: Riding the Cancer Wave – Spirtually Speaking

I gave it a try but the description already had me on edge. 
"The journey through cancer is not unlike riding a wave—peaks, valleys, wipe outs and even sublime thrills. No wave is exactly like another. Each surfer has a unique style and way to navigate the wave and all its surprises. xxx, will explore the qualities he’s observed that help people ride the cancer wave with greater ease. He will also share what may happen when lifelong beliefs meet the challenge of cancer and discuss how it is that we tend to find meaning in the unlikeliest of places—including on the cancer wave.”

It started off fine, but when he said that “everything happens for a reason,” I had to walk out. The implication that I did something to cause my cancer and early death is unforgivable. There is no reason. It happened. I didn’t stay for the rest but I heard from someone who was forced to stay (disability issues) that he even dropped the “cancer is a gift” bomb. I have no idea who invited him, but whoever did needs to be severely disciplined. This type of speech is totally unacceptable. 

I skipped the End of Day Remarks and went for a run. By then, I was as mad as hell and I needed to clear my head. Afterwards, a few of us went to dinner at a great Chinese restaurant. Enjoying a meal with friends always restores my soul.

Sunday

I went for a run and skipped the breakfast. I also decided to let the first session go. I just don’t get why people think that when we are terminally ill we want to experience our touchy-feely side. I’m sure it helps some but to devote a whole morning to it seemed like someone was really not focusing on what we needed. Acupuncture, meditation, yoga and whatever simply don’t work as well as Ativan and at this point in my life, I will put my mental health in the pill bottle every time. Seriously, we have to get things done. I don’t have time for the other stuff that is not going to make me better. Let’s talk going for a 5-mile run while I listen to a biography of Genghis Khan. Now that I can get into.

The final talk of the day was Increasing Wellness: Foods to Fortify and Boost Your Immune System

I love nutrition and this talk did not disappoint.

Highlights:

· Probiotics are good bacteria. Found in fermented food such as kefir, yogurt, sauerkraut, kombucha and sourdough bread. Sourdough bread. Awesome.
· Fiber. Beans, oats.
· Good food: Artichokes, asparagus, bananas, vegetables (duh), nuts, fish, avocado, flax.
· Vitamins minerals and antioxidants
o A = yellow and orange foods and broccoli and spinach
o C = lots of fruits and vegetables – tomato
o D = sun, egg yolk , vegetable oils
o Zinc = nuts, whole grains, beans
o Selenium = plant foods
o Copper – leafy greens

We don’t need a supplement unless we have a low level. If it is low for any nutrient, take a supplement to get to normal and then maintain it.

Sugar does not feed cancer but don’t eat junk more than twice a week.

Julie Lanford is on twitter @cancerdietician

About the numbers

My statistics are from two sources: SEER (cancer.gov) and from the top cancer journal, CA

Misquotes:

·         We are living longer with breast cancer.

I don’t see it. I see two things wrong with this statement.

1.       The median age at diagnosis is 61 and the median age at death is 68. Untreated breast cancer is estimated to take about three years from diagnosis to death. That is, all that surgery, chemo and radiation is adding four years from diagnosis to death to the median.

2.       Techniques for diagnosing breast cancer, especially advanced breast cancer, have improved. Women are diagnosed earlier but that does not mean that overall they are living longer. They are living longer KNOWING they have breast cancer and that is not the same thing. For example, I was diagnosed with metastatic breast cancer almost two years ago because my tumor markers were rising. A scan confirmed the metastasis to the hip. I had no pain and no symptoms.

·         The number of women dying from breast cancer in the USA has not changed since 1970.

1.       The number of women dying from breast cancer in the USA has increased since 1970. In 1970 30,100 people died of breast cancer in the USA.

2.       The number of people dying kept increasing every year until it stabilized in 1992 at about 46,000. The number was approximately 40,000 for 2014 and is expected to be 40,730 for 2015. If this represents a rise in cases, please refer to the above about knowing about it for longer.

3.       The number of cases of breast cancer is over three times higher now than in 1970 (from 68,000 to an expected 234,190)

4.       The incidence of breast cancer and the death rate declined the most from 1995 to 1998. Then the incidence started to rise again with a modest decline in death rates from 1998 to 2011.

·         Breast cancer is rare in women under 50.

1.       The most common cancer in women under 50 is breast cancer and women under 50 have a 1:53 chance of getting breast cancer.

2.       The lifetime risk is 1:8.

XXX

Update on clinical trial: Vaccine For a Cure

I completed my loading dose of vaccines and antibody. I had four injections of the vaccine ONT-10 each week for eight weeks. In addition, I  had three infusions of the antibody, varlilumab, one every three weeks. Now I wait for my scans next month to see if it worked. If it does, I go on a maintenance dose every six weeks.

I feel great with no side effects. It is a wonderful break from AIs and all the problems those bring. You know what those are! I have managed to work and exercise normally and have a lot of energy. Sometimes I have so much energy that I can’t get to sleep and I get up to code. Then I have computer code chasing me all night.

XXX

How  does the early death of a mother from breast cancer affect a family.

Have you ever wondered what the long-term effects are when a young mother dies? This is the story of one family I know. The mother’s death was like taking a hammer to a mirror and then watching the splinters scatter and cut and scar. A husband and five children were left. The disease did not just take the mother. It took a family.

Six people were cast adrift. The anchor was gone.

·         6 people moved in different directions, lost

·         5 marriages, 2 divorces

·         2 very unhappy marriages not divorced

·         4 with drug and/or alcohol  problems

·         2 drank themselves to death

·         1 became a philanderer

·         1 turned to promiscuity then prostitution

·         Another went to prison for embezzlement

·         1 went to college

·         There was no proud mom at graduations

·         There was no mother-of-the bride

·         There was no grandma for the babies

·         There were no more family get-togethers

·         All struggled alone without a family safety net

·         The ones that are left have not interacted for decades

·         They were not nice to each other.

 

Science and magic

The mass of men lead lives of quiet desperation. Thoreau

Any sufficiently advanced technology is indistinguishable from magic. Clarke

Update on my clinical trial

I’m still on the vaccine clinical trial. I am enjoying this period of no side effects, no symptoms and a relatively peaceful time. My life is still very much constrained by Thursdays at the hospital for the injections and infusions as well as trying to get work done. Fortunately, I have a flexible schedule. Unfortunately, I seem to be working all the time. This week, I had a sick dog and that ate into my spare time so I was quite stressed because of course, a sick pet takes priority of just about everything else.

I am currently doing a few MOOCs as well and fell sadly behind. Working on:
Future Learn: Inside Cancer
 

xxx

Reading the highest rated (by impact factor) cancer journal. Two articles of interest in breast cancer research. I’m just summarizing what I read.

From CA : A Cancer Journal for Clinicians

Medical marijuana for cancer: The conclusion was that more research is required. I followed the breast cancer references. My interest was only in breast cancer so I skimmed the rest.  Synthetic cannabinoids (component of marijuana created in a lab) have been shown to have antitumor effects in breast cancer in the lab and in mouse models. However, that was from early 2009 and the research does not seem to have gone anywhere since then. One reason may be because other research has shown that exposure to THC (the psychoactive component of marijuana) inhibited anti-tumor immune responses in breast cancer in mice and resulted in significant tumor growth and metastasis in some lines. (Comment: Something else to bear in mind is that negative results are rarely published so if further research showed nothing, we are unlikely to ever know.)

The problem with the research at this point is that marijuana is not standard and newer strains of the drug have higher THC to CBD ratios as the emphasis is on the psychoactive component. The lab and mouse studies are usually not compared to anything or only compared to a placebo, not standard treatment. So far, for breast cancer, there is no credible evidence that marijuana is better than standard treatment for tumor inhibition, appetite enhancement in cachexia, pain management or anti-emetics in nausea and vomiting from chemo.

Global cancer statistics 2012: Breast cancer was the most frequently diagnosed cancer and leading cause of death worldwide in women and the leading cause of death in women in less developed countries. There were an estimated 1.7 million cases and 521,900 deaths. In the world, breast cancer forms 25% of all cancer cases and is the cause of 15% of all cancer deaths in women. About half of all breast cancer occurs in more developed countries and cause about 38% of the deaths from breast cancer. The only area of the world that had a higher incidence of breast cancer than North America was Western Europe with 96/100,000. North America had 91.6/100,000. This figure was not broken down further by type of breast cancer.

Superstition and science

My childhood is the story of colonialism in Africa. I grew up listening to the tales of magic and superstition from my nanny. My dreams were vivid stories of ancestors and love and war. I ate mealiepap for breakfast, umfino made with pumpkin leaves for lunch, and Umngqusho for dinner.

I understand superstition and my parents had deep respect for the power of the sangoma (traditional healer). The sangoma is still consulted by many even when conventional Western medicine is used. The sangoma was also consulted to put a curse on someone or remove a curse, to heal a body or spirit or find a cause for a broken one. I’ve known people to die because they believed that a curse had been placed on them even when no xray or test found anything wrong. I have also seen people die because they consulted a sangoma instead of taking an antibiotic for pneumonia. I have seen the comfort in crisis by the sangoma. When the sangoma threw the bones to tell the future, I lived in fear of what the bones would tell.

We had a family feud that went back four generations and with many accusations about sangoma curses. Every time misfortune would befall one side of the family or other, it was attributed to a curse. I still cannot look at a devil thorn without thinking about the “other” side of the family accusing my father of cursing their home with devil thorns.  Of course I only heard one side of the story.

Superstition is more than curses. It often reflects a lack of trust. I have heard young men say they refuse to wear a condom because it is a plot to limit procreation, not to prevent the spread of HIV. We have read the recent stories about ebola that illustrated the mistrust

My experiences in Africa left me with a love of magical things. (Don’t take me on in a Harry Potter quiz. You WILL go down.) However, studying science has enabled me to put that part of my life in my fond memory box.

Now, I will do things that my mother would never do.  I will seat 13 at the table, walk under ladders and break mirrors with abandon. It was a long road from running barefoot in the mud in Africa, terrified of every superstition and tokoloshe (boogeyman sent by the sangoma) to the world of running shoes and science and reason and clear rules to live by. In one generation, with a lot of lucky breaks, my life and the lives of my children were forever changed.

In my rather insulated world of science, we scoff at superstition and quackery and I have a knee-jerk angry response to quacks. If people want to pursue alternative treatments, there is no law against it. However, it may not be harmless. If people make claims about it that are not true or screw up a treatment by doing things on the side without telling their doctors then others might die. They raise their children with a mistrust of science. The US is now near the bottom of the developed world in terms of science literacy. Shame on us. So many of these quack claims are not even possible and reading a basic biology text would show them to be impossible. It is unfortunately unlikely that those who believe them would read a basic biology text. I want to emphasize that I am not talking about a handful of vitamin pills that your doctor laughs at and that end up being flushed through your urine. The few dollars spent probably don’t do more than minimal harm. I’m definitely not talking about your weekly or daily yoga or meditation class. I’m talking about serious and expensive cons that unscrupulous people use to part desperate people from their children’s college fund. Vitamin supplements are for another day, as are reiki, energy healers and other quack cures.

Science does not always get it right and I’m a huge skeptic of any evidence that is gleaned through self-report. I know enough about human behavior and memory to know that we don’t do what we say we do and we definitely don’t remember what we did. However, when I blast another quack cure and I get a stream of correspondence, I am alarmed that people try to persuade me by offering superstition.

1.       Anecdotes are not evidence. Testimonials are powerful persuasions but they are rubbish. Even if true (doubtful), it’s one person’s experience. Please don’t tell me that it worked for you is the only evidence that it works.

2.       Who wrote the article? The source of the claim is what gives it credibility. I’m often sent articles written by people who are making the preposterous claim.

3.       Quick check: Is the article from a credible journal? What is the impact factor?

4.       Second check: Did you look for credible evidence that it was not true?

5.       Newspapers sometimes offer accurate information but often it is best to remember that they are in the business of selling news and a perfectly accurate report may not be as sellable as one with selected highlights and exaggerations.

6.       The supplement industry is a multi-billion (that is not a typo) dollar industry. No one is getting poor on your supplements. Oh, except for you, that is.

7.       Computer models of disease and treatment are of limited use.

8.       Cures in the lab (in vitro) or in mouse models often don’t go anywhere. An estimated 95% of drugs never make it to treatment. Because something works in a petri dish does not mean it is an effective or even safe treatment. A whole lot of chemicals kill cancer cells in the lab. Fewer make it past mouse models and even fewer past clinical trials.

 

I know what it is like to be desperate. I cling to the hope that a cure will come before I die. However, I have watched women spend every last cent on looking for a miracle and dying broke and with heart-wrenching regret that they wasted their last good years instead of living in the joy of experience.  

My plea would be to donate those dollars to find a cure. Please donate directly to research. It is our only hope. There are many options. I like this one because they do research on breast cancer in young women.