Metaphor in Lord of the Rings

Update on clinical trial MLN0128

Cycle 7, week 4

I have been in the clinical trial for almost 8 months. I still feel fine with no new symptoms but my next scans are still just over 4 weeks away. The most bothersome side effect is the itching. I have a fine rash over most of my torso and it itches terribly at times. It is far worse than when I was on the 5 mg so I’m wondering if it has something to do with 4 mg being in the form of two capsules and 5 mg in the form of one capsule. I have a bit of diarrhea when I wake in the mornings but it is not like before. I also have occasional nausea. However, now that I take the drug at night, I take an Ativan and that sends me to sleep and I sleep through the nausea.  The mouth ulcers come and go as before. I still run for an average of 30 minutes a day and walk 50 – 60 miles a week. I still work and bake bread and record my life in photographs and video. I haven’t done any traveling in the last four weeks. I came back from NYC  with a terrible cold and it took weeks to recover.

Metaphor in Lord of the Rings.

Frodo: I wish none of this had happened.
Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.

As the weather turns colder, I am stuck exercising on the treadmill more and more. The treadmill is nicely placed in front of our large screen TV so this is an opportunity to revisit my favorite movies. Currently, I’m working my way through the LOTR trilogy for the many-ith time. At the end of Fellowship and the beginning off Two Towers is the battle of Gandalf and the Balrog, Durin’s Bane. As I watched it again, I was struck by the metaphor of cancer as Gandalf the Grey fought the Balrog.

Now, I have never liked the metaphor of cancer as a battle or fight. A battle implies that you have a chance of winning if you fight strategically. What we know, or more accurately, don’t know about cancer makes winning or losing arbitrary. My response to people who think they will win against cancer is, “Maybe you will and maybe you won’t.” You do not defeat cancer by force of will.

At the Bridge of Khazad-dum, Gandalf turned and faced the Balrog and refused to let it pass so that the others could escape. Gandalf broke the bridge and the Balrog fell. Gandalf then turned away from the Balrog and the falling bridge to flee with the others who were escaping. However, as the Balrog fell, it wrapped its whip around Gandalf’s legs and dragged him into the abyss. The two continued their battle until Gandalf killed the Balrog. However, the cost was the life of Gandalf the Grey. Gandalf returned briefly as Gandalf the White to complete his tasks.

As we face the diagnosis of cancer we turn and fight. We bear the beatings of surgery, radiation and chemo. Then finally we are done. We are exhausted and wounded and battle weary, but hopeful that is all we have to endure. We turn to flee back to our old lives. But we are suspended there at the end of the crumbling bridge in a timeless void. We have no idea if the whip of cancer will catch us again and pull us down into the abyss to continue the battle, knowing that if it does we must die. We can fight and take the lashes for a while and use the time to finish our quests but this will be our final battle. We will find incredible strength at times, but the old wounds will haunt us and eventually we have to confront the end. The Balrog dies when we die.  

 

 

 

Update clinical trial MLN0128

Cycle 7, week 4

Amazingly, I have been on this clinical trial for almost seven months. During that time, I have had three scans. The first scan after two months showed dramatic improvement, the second after four months showed stability and the third after six months again showed dramatic improvement. Of course, I don’t have information on how others are doing, but I’m told that my response has been outstanding. As researchers and biotech companies try to unlock the secrets of why some do very well, some stay stable and some just don’t respond at all to the new drugs, I am fortunate to be part of this and I don’t take the science or the luck for granted.

There have been definite ups and downs. The first three months were relatively easy. My biggest challenge was facing down the mouth ulcers that covered the inside of my mouth, too many to count. Valtrex  (a drug I have taken for cold sores) and capsaicin (the chemical that gives hot peppers their burn), got me through that stage. I found the best way to numb my mouth was to rinse it with very hot salsa so that the capsaicin made every nerve ending scream while I white-knuckled the edge of the sink and let the pain wash over me. The nausea and occasional vomiting were controlled with hefty prescription drugs.

At about the three-month point, I started getting diarrhea. This put a definite damper on my enthusiasm for the drug. At first, the diarrhea was controlled with regular four-hourly doses of Tincture of Opium. Despite the romantic-sounding name, it is the worst tasting medicine you can imagine and has none of the good effects. I kept taking it every four hours so that I could go to work, run, eat, and live. Gradually, however, I would have to plan my day more carefully. It was good for four hours and maybe a second dose would work for another three. I began to arrange my schedule around the opium like a dyed-in-the-wool addict. The nurse suggested I halve the clinical trial drug for a while. I refused. I am not used to giving in to discomfort and inconvenience.

Finally, however, I skipped my last dose of the clinical trial drug at the end of the sixth month. My weight had fallen to just over 100 lbs. on my 5’6” frame. I could barely walk. I could not eat and I was so dehydrated that my eyes were dull. That is not to say that I gave up running. Of course not. Every day, I set off for my five miles. I never made it anymore without stopping on the side of the road to rest. I continue to be surprised that no one stopped to ask if I was all right. I longed for a drink of water, but forgot to take it with me because my decision-making was so clouded.

At the six-month check the oncologist did not give me a choice anymore. I was to stop the drug for at least a week until I felt a little better. My relief at having the decision taken from me finally melted my resolve to stick it out and I could not stop the hot tears. I ended up stopping the drug for two weeks and the diarrhea stopped. I got my appetite back and managed to run five miles without stopping again.

 

 

I am now back on the drug at the lower dose of 4 mg instead of 5mg. I desperately hope that it continues to work but I also know that there were serious QOL issues at the higher dose. I have no pain and no symptoms but I’m not under any illusion that means I am fine. 

I have had seven months more of life that I might not have had. I have watched winter turn to spring then to summer and now to fall. I can measure what I have done in actions. I have given academic presentations and taught my students and listened to them and taken them out to eat. I have helped them write scholarships and graduate school applications. I have written letters of recommendation.  I have fought with the chair of the department when he was wrong. In the last seven months, I have taken trips to Salt Lake City, Omaha, Tampa, St. Pete’s Beach, Las Vegas, San Francisco, New York City (twice), San Diego, Orlando, and Anaheim and  have attended 10 conventions. In seven months I have run and/or walked over 1400 miles.

 

 

However, my life has been so much more than a series of actions. I have worked and been a responsive and involved wife and mother and professor. I have cooked and cleaned and played with the dog. I have found my community of friends online who I genuinely love and respect. I have been a supportive friend because I still can be one. I have still been able to give more than I need from others. And so it is onward and upward.

 

 

 

 

 

Profile of a woman dying of breast cancer

·         I am every woman. There are parts of me that are you.
·         I love my family more than anything and they love me. Or so they say.
·         I am neither young nor old. I am unlikely to ever see retirement age and will never use my retirement savings.
·         I am neither rich nor poor, but closer to rich than poor due to a lifetime of working and saving.
·         I am 5 ft. 6 in. and have never weighed more than 115 lbs. except when I was pregnant. After each pregnancy I was back at 115 lbs. by my 6-week checkup.
·         I had four normal pregnancies and gave natural birth to four healthy children. I breastfed each baby for 18 months.
·         I have never smoked and drank very little alcohol (about a glass a month) and none in the last two decades.
·         I never went on the birth control pill because there was a study published in the 1980s that it was associated with breast cancer. See above for four children.
·         I have been a vegetarian almost all my life and a vegan for the last decade.
·         I have run and walked 50 – 60 miles a week almost every week since I was in high school, even up to the day my babies were born and a few days later.
·         Most of my shoes are running shoes.
·         I floss my teeth twice a day.
·         I am a terrible dancer and cannot sing in tune.
·         I have no sense of direction and will get lost anywhere. Getting lost is my special skill.
·         I cannot draw and am in awe of all who can.
·         I’m allergic to anti-cholinergics and dairy.
·         I have been prepared to die for my beliefs.
·         I care very much for the mentally ill. I give a dollar to all homeless people who ask. I keep a stack of dollar bills for this purpose.
·         My students call me the department mom.
·         I am a card carrying member of the ACLU. Although I don’t support all their causes, I feel that someone should.
·         I can hold very hot things and I stop watches that I try to wear.
·         I have hundreds of thousands of photographs of my family and trips.
·         I have had four different first languages. I learn and forget languages very easily.
·         I have traveled a lot.
·         I have two master’s degrees and a PhD. I am a scientist.
·         I have had three completely different careers.
·         I love JK Rowling, Jane Austen and Alexander McCall Smith.
·         I read about one book a week.
·         I covered up my radiation tattoos with tattoos of a four-leaf clover (my four children), a stylized deathly hallows, an owl and a dragon.
·         I cry easily when you tell me a sad story. I faint when I see someone in pain.
·         I hate scary movies.
·         I am very loyal and find betrayal unforgivable. I can hold a grudge for a long time.
·         I laugh often and loudly to the embarrassment of my children.
·         I am dying even though I did everything I knew to prevent this disease and then its recurrence.

My wish list for the NIH

Over the past four decades I have seen a lot of really unhelpful research on breast cancer. And let’s face it, we really have not got very far. Recently, I have been asking why grant reviewers have not demanded more useful research, only to find that I am late to the party.

There was an interesting article at http://www.wnyc.org/story/when-patients-set-sciences-research-agenda-who-loses/ in which patients set the agenda for breast cancer research instead of the individual researcher with an idea. Yes.

Here is MY wish list for the battle. And it is a battle. However, when I die of this disease, please do not say that I lost my battle. Every time a woman or man dies of breast cancer, we all lose a battle. It is only my list but we are in this together and hiding behind pink ribbons does not stop the wives, mothers, sisters and daughters, husbands, fathers, brothers and sons from being mowed down.

1.       Funding. The NIH could open a fund for breast cancer research and everyone who wants to donate could donate directly. The NIH already hires staff to oversee grant funding so they will have no incentive to raise funds for the sole purpose of maintaining their organization. Let’s boycott pinkwash. They had a chance but used our money to tie pretty pink ribbons in the name of awareness while women and men died.

2.       Prevention. Prevention would be ideal. We know that longevity runs in families. What is it about some people that makes them less susceptible to cancer? What if we study the healthy to find out why their cells never turn cancerous? How can we use that information to prevent our errant cells from turning on us? In fact, many of us are our own labs. If breast cancer only develops in one breast, what caused the mutation in DNA in that breast and not the other?

3.       Treatment. Why is the current treatment not working very well? In fact, how well is it working? We have not made a lot of progress in terms of survival and it would be good to know why.

4.       Metastases. Why do some cancers progress and others don’t? Let’s eliminate talk of that five-year survival window. Many of us easily make it. It is meaningless and artificial. Let’s study every patient from diagnosis to death and record recurrence if and when it happens. Let’s examine what is working for long-term survivors so that every patient can be a long-term survivor.

5.       Correlations. A correlation is an association between two events such as eating red meat and breast cancer (unproven) and is reported using Relative Risk (RR). Correlation does not mean causation. Some studies showed an association, but when you combine all the data from all the studies, the effect often disappears. One of the most robust associations is between smoking and lung cancer. If you smoke, you are more likely to get lung cancer than if you do not. However, not all who get lung cancer smoke and not all smokers get lung cancer. In fact, the lifetime chance of getting lung cancer if you smoke is only between 15 and 25% (depends on your source) of all smokers. Correlation has a number of flaws so let’s see no more correlations. It is especially important to disregard correlations that are drawn from a patient’s memory. A study from 1993 described how patients’ memories of what they ate was altered after the diagnosis of breast cancer. In an earlier survey they had described their diets. After the breast cancer diagnosis, their memory of what they had eaten included more fat than the original survey. In other words, the diagnosis changed their memories. There is a good explanation by Charles Wheelan at http://thegovlab.org/garbage-in-garbage-out-or-how-to-lie-with-bad-data/ If you are still not convinced that correlations are not helpful, you can find some really funny ones at http://fatchicksings.com/2014/05/12/does-eating-margarine-cause-divorce-correlation-is-not-causation/

6.       Central database. The power of 21^st Century computing is not being exploited. The entire genome (all the genes of a cell) of all breast cancer patients, their diet and exercise habits as well as their treatment, side effects and recurrence could be kept in a central store and computers can sift out the common elements. I am now in a clinical trial and the trial sponsors  demand a lot of my blood. The results are for their clinical trial alone. Now, imagine if that amount of data could be pooled for every patient.  Data could be input by health care workers and patients. We could sort out common side effects that some doctors refuse to acknowledge even exist.

7.       Grants would be prioritized so that applied research now gets top priority. Basic research has led the field and has resulted in a theoretical understanding of breast cancer, but now we have reached a point where the research must be applied to saving lives. We cannot afford to keep waiting for the theory to lead to changes in far future treatments. We need treatments now, and we need it from researchers as well as biotech companies.

8.       Stop funding unhelpful research. If the research does not save lives, or it requires leaps in logic, or is so theoretical that it cannot be implemented, it is not helpful. Every study needs to answer the question: Why is this important? Let’s move on from the research flavor of the month.

9.       Every research trial could be registered with the NIH before it even starts, and not only the ones funded by the NIH. That way, if there are a thousand studies on say, the use of soy, but only five showed significant effects then we can examine the effects of random chance.   According to Charles Wheelen, some journals already require this. http://thegovlab.org/garbage-in-garbage-out-or-how-to-lie-with-bad-data/

10.   One more selfish thing. The clinical trial that I am on has a side effect of diarrhea. Chemo left me unable to tolerate anti-cholinergics. All that is left for me is the absurdly disgusting tincture of opium. Why am I controlling side effects with a drug that is thousands of years old? I’m not much of a whiner. I get up in the morning, run, do chores, be a wife and mother and go to work no matter how sick I feel, but tincture of opium brings out the 2-year-old in me.

·         2-year-old me: I don’t want to take it. It tastes terrible.

·         Logical me: You have to take it to stop the diarrhea.

·         2-year-old me: But the taste does not go away for a long time.

·         Logical me: But the diarrhea will not stop if you don’t take it.

·         2-year-old me: What’s the point? I’ll just have to take it again in 4 hours

·         Logical me: Your diarrhea will be more-or-less controlled for 4 hours

·         2-year-old me: But it won’t go away

·         Logical me: It will get worse if you don’t take the drug

·         2-year-old me: No, maybe it will stop now

·         Logical me: You know it won’t.

And you won’t believe how long this can go on.

 

 

 

 

 

 

A tale of two breast cancers

MLN0128 Clinical Trial update

Cycle 6, week 1

I’m still doing well. Blood tests are all in normal range. I have the same old side effects and still trying to live life fully. In August, I went to two cons and took a trip to Las Vegas. This month, I’m going to a conference in Tampa. I still work.

 ***

A tale of two breast cancers

Or what progress?

Tweet that claimed: There has been a dramatic improvement in breast cancer treatment over the past 50 years. Really? Not from where I am.

http://breastcasym.org/50-years-breast-cancer-dramatic-progress-treatment-based-improved-understanding-biology

Let’s examine the last 40 years with an anecdote.

In 1966, my mother was diagnosed with breast cancer. We lived in rural Africa.

I was diagnosed in 2005. I lived in the USA.

Mom: Felt a lump, admitted to hospital, biopsied under general anesthesia and radical mastectomy performed without her even coming out of the anesthesia. She was asked whether she wanted to get the biopsy results first or have an immediate mastectomy if the biopsy was positive. Having the entire procedure done together was her choice.

Me: I felt a lump, went to see the NP, and sent for mammogram the next day. The mammogram was clear so I was sent home. I went back five times over the next 10 months complaining that I was ill, but kept being told that the mammogram was clear so I had a fibroadenoma. Eventually, 10 months later, the lump had grown so large, there was puckering and another mammogram and breast MRI was performed. This was followed by a biopsy. The surgeon called 3 nerve-wracking days later to tell me that it was positive for breast cancer.

Mom: After surgery, she stayed in hospital for 2 weeks getting advice and care from Reach to Recovery, doctors, nurses and psychologists.

Me: I had an excruciating lymph node biopsy and breast conserving surgery two weeks later. The two-week time schedule was for the surgeon’s schedule, not my own. I spent one night in hospital, sharing a ward with a patient with dementia who had her foot amputated.

Mom: She was given as much sick leave as she needed. Her insurance paid everything.

 Me: I needed aggressive treatment and lost my job. At the time, my husband and I were commuting so we sold our house to pay medical bills, packed up our children, and moved to a large urban area where my husband worked and the insurance would provide better coverage.

Mom: After surgery, she had aggressive radiation that burned one side of her chest. The dark scar was there until she died.

Me: I had 18 weeks of chemotherapy with all the consequences of aggressive chemo. For 12 weeks, I barely moved from the bathroom floor. It goes without saying that I lost my hair and suffered the usual. Chemo was followed by 6 weeks of radiation therapy that burned one side of my chest. There was no lasting scar but the radiation area has been covered in a rash ever since.

Mom: There was no follow up care after the radiation treatment.

Me: Radiation was followed by two years of tamoxifen, one year of   aromasin and four years of femara. I saw the oncologist every three months then every six months. I had endless blood work.

Mom: She was left with poor strength in one arm and could not lift a gallon of milk with that side. She also had severe lymphedema, for which there was very little that anyone could do. She used to raise her arm above her head whenever she got the chance. She often told people that the lymphedema was the only reminder that she had ever had breast cancer.

Me: I was left with poor strength in one arm and could not lift a gallon of milk with that side. Due to the surgery, I could no longer raise my arm above my head without it pulling. I experienced joint pain and a skipped heart beat (from the hormone treatment), and permanent neuropathy and fatigue (from the chemo). My nails continued to lift off the nail bed. I developed a permanent severe anticholinergic allergy and lactose intolerance from the chemo. Reconstruction was not an option as elective surgery was considered too risky.

Mom: Continued to exercise after treatment. She loved to go on long walks.

Me: Continued to exercise after treatment. I love to run and walk.

Mom: She did not go into menopause.

Me: Chemopause started with the second chemo and was complete two years after treatment ended.

Mom: She wore a bra with a prosthesis.

Me: I was unable to wear a bra after treatment. The surgery and radiation had left me with two different sized and shaped breasts. A bra cut into me so I started wearing camisoles.
Mom: No later effects on her teeth and bones.

Me: Don’t even get me started. Osteoporosis and osteopenia were immediate consequences. One broken rib and five dental crowns and an implant have followed treatment.

Mom: She went back to her regular full-time job three months later and worked until she died in 1975.

Me: I have taken a job where I can be flexible with my hours.

Mom: About eight years after her initial diagnosis, she started coughing and the cough would not get better. She had a chest x-ray and they told her she had a “chronic” cough. No one ever said anything about metastases but we all suspected that. She never talked about it.

Me: About eight years after my initial diagnosis, my tumor markers rose and I had a scan. The oncologist called me two days later to tell me that I had metastasis to the bone.

Mom: She died less than a year after the cough started, in hospital. She spent only one night in the hospital because she needed oxygen to help her breathe.

Me: I have been stage IV for 17 months. I am on my second treatment protocol, a clinical trial. I am told every small victory or progression. Each day I cope with diarrhea, mouth ulcers, nausea and vomiting. I will work until I have to go on disability. I take tincture of opium to control the diarrhea. Ironically, this ancient drug is my only option.
***
How much progress have we really made in 40 years?

According to the National Cancer Institute:

1975: 31.4 per 100,000 women died of breast cancer.

Now: 21.5 per 100,000 women will die of breast cancer this year.

1975: The 5-year survival rate was 75.2%

Now: The 5-year survival rate is 89.2%

1975: The proportion of those who died to those who were diagnosed with breast cancer in one year was about 30%.

Now: The proportion of those who die to those who are diagnosed with breast cancer is about 17%.

However, it still may be premature for the self-congratulation on progress. Although women are living longer after a breast cancer diagnosis, the 30% number for those who will die of the disease has not budged. It is just taking longer. Women are being diagnosed earlier which might account for the longer span. It is not because they are surviving breast cancer, simply that they know about it sooner and so perhaps taking longer to die.

1975: Diagnosed at advanced stage (III or IV) 30% (Louwman et al., 2008 - Netherlands)

Now: Diagnosed at advanced stage (III or IV) 13% (Louwman et al., 2008 - Netherlands)

If you look at the graphs of age at diagnosis and year, you see that more women are being diagnosed with breast cancer now than in 1975 for every age group except the 85+ age group. In other words, a woman diagnosed at age 85 or older is simply unlikely to survive five years and there were more women in that age group in 1975 than there are now.

Don’t get me wrong. I’m overwhelming grateful to the biotech companies for their tireless work in delivering new drugs. They are giving me more time to die. However, the time is being measured in weeks and months, not years.

I think we have made progress in tracking the disease but not treating it. It is not the time to be complacent. True progress is unlikely to be in time for those of us with stage IV.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Your abstract language tells me you can’t be trusted.

Update on Clinical Trial MLN0128, Cycle 5, Week 1

Scans at the end of cycle 4 were stable so I continue on the study drug for the interim. There has been no improvement since the dramatic improvement after the first set of scans, but there has not been any disease progression either. The gastro-intestinal effects of the drug are more-or-less controlled by other drugs. Fatigue is manageable. I came out in a very itchy rash that is apparently due to the prior radiation and is called radiation recall. Hydrocortisone ointment takes care of it. I am still cramming everything I’ve got into my every day. I went to five cons over the last two months and I have a 5k road race tomorrow. Next weekend, I’m going to Las Vegas. I still work and garden and read and play with the dog.

*

Although most health care personnel I interact with are clearly deeply compassionate and well-intentioned, I have experienced a series of expressive mishaps in the hospital and doctor’s office. It can’t be easy to give the worst news most of us will ever hear or deal with our fragile emotions, but sometimes the words that are supposed to comfort us contradict the best intentions. I realize that not everyone scrutinizes every verbal interaction with my intensity, however when communication goes awry, there are unintended consequences and implicit inferences are made that influence behavior.

Clichés

My mother used to respond to every situation with a little aphorism or cliché. It annoyed me then and when the surgeon or anesthetist of phlebotomist does it now, it annoys me again. I never had the chance to have an adult conversation with my mother. She was diagnosed with breast cancer when I was 10 and she died when I was 18. I never responded to sayings like

>If it’s worth doing, it’s worth doing well.

Of course, not everything is worth doing well. If you try to do everything perfectly, you won’t get anything done. Now my response might be another cliché:

>That leads to being paralyzed by perfection.

Talking to patients in clichés sends the message that you are not really listening. You are automatically responding with words that have no meaning and just filling the emptiness of my deep distress. Even if you do care, the message you are sending is one of disinterest and indifference.

One of my least favorite clichés, used by nuclear medicine technicians, receptionists and nurses alike is

>Everything happens for a reason.

This is often said with assurance and wisdom. I narrow my eyes and tilt my head and I burn to respond with,

>What do you mean?

There are at least two interpretations. It could mean that you think that the reason I have cancer is because I did something to set it in motion. My actions caused the cancer. (Aristotle’s efficient cause.) I’m sure that is not what was meant, but clichés will have multiple interpretations. However, if you mean that there is some future benefit in a disease that will soon kill me (final cause), that’s equally unacceptable. The future cannot cause the present. It is completely meaningless to say that everything happens for a reason. Life is a series of unpredictable events.

Everything happens for a reason is often accompanied by

>Everything will be OK.

You and I both know that is not true. It won’t

You make my life difficult

The lab technical were I get my scans, suggested that I get a port because she was having difficulty getting an IV line into my vein. I told her that I would get a port when it became medically necessary. If she was having trouble with the IV then she should call someone with more experience. I was not comfortable with the message that she was sending that she was not very competent.

Tell me what is in your file

I went for genetic testing. The genetic counselor was wonderful. She summarized by medical history and then met with me and an oncologist (not my usual one). The oncologist had not looked at my file, not even read the short summary in front of her. She asked me to repeat my whole medical and surgical history. I have to say I was confused. Surely a concise summary by an educated professional was more accurate than my rambling story which was prone to errors in memory and interpretation. As I recounted my history, I got more and more upset. And the oncologist just sat there impassively. I felt like one of those interviewees on the news. I was half expecting a news anchor to stick a camera in my face at any minute and ask how I feel.

Life is uncertain for us all

I can’t tell you how many times a doctor or nurse has said:

>I could be hit by a bus

I understand that they are using this as a metaphor to demonstrate that random events happen and perfectly healthy people die too. However, I think this metaphor trivializes our anxiety. There really is no connection between your random event and my certain one. Your chance of being hit by a bus is about 1: 1,000,000. Your chance of being hit by a meteorite is actually more likely at 1: 500,000. Now, I don’t know about you but I have never woken at 2 AM worrying that I am going to be hit by a meteorite but I have woken at 2 AM plenty of times with the cold reality of fear that my life is going to be over soon.

What is your learning style?

I needed radiation to the lesion in my hip. The patient interview at the radiology department started with asking me how I learn best, e.g., reading, being told, or watching. In other words, they were asking my learning style. I answered that we all learn better by having the information presented in as many ways as possible and there was no evidence for a particular learning style being more effective. Then I wrote to the CMO and told him that emphasis on unscientific fads negatively impacted the credibility of the hospital.

Too much optimism

I think the surgeon who was doing my biopsy was trying to reassure me and give me hope when he said,

>It may be nothing.

He was referring to the metastasis that had been clearly seen on a bone scan and accompanied by an alarming rise in tumor markers.

>I don’t think so, I replied.

He looked chagrined for a moment and then said he didn’t think so either. However, I could not shake the feeling that I was to trust this man with a knife in my body while I slept and he had tried to mislead me with false hope.

When I was diagnosed with stage IV, my oncologist, gave her optimism speech. She told me about patients who had lived a decade or more after a diagnosis of stage IV. I let her talk and then I patted her hand and reassured her that I trusted she would do her best, but I made it clear that I needed concrete information. I needed to trust her. When people talk in abstract terms, you are inclined to find them less trustworthy. That makes sense if you think about it. If someone is being evasive, they are using vague language. The process becomes clouded as we try to figure out what they are hiding. I often leave believing the situation is much worse than it really is because it was all so vague. I have heard doctors say that they are just trying to give patients hope. Sometimes, I wonder if it is the doctors who are trying to give themselves hope. When patients don’t live up to the believed expectations of treatment response, they hide information from the doctor. It would be much more beneficial to say that there are patients who respond very well to treatment. However, these cases are rare but here is no reason why any one patient cannot be one of these lucky few. There are no guarantees either.

 

Cancer is not a gift

Update Clinical Trial MLN0128 Cycle 5, week 1

Scans last week showed disease is stable. This was disappointing as two months ago scans showed improvement. For now, I am still in the clinical trial but I can’t help waiting to see if I get a phone call booting me from the clinical trial for not improving. As luck would have it, I’m actually managing the side effects quite well now. I went the whole day without needing to take anything for side effects today for the first time in a month.

I still run nearly every day but now I run with a back brace to try and stabilize my crumbling hips. I’m still desperately waiting for a cure. I’m not looking for a long life, just a normal lifespan. I worry that the lesion in my right femur is going to result in a fracture. I worry.

**

Cancer is not a gift – it’s a disease

When I was diagnosed with stage 3, grade 3 breast cancer, I was referred to a dietitian.

>Dietitian: Cancer is a gift
>Lulu: Sorry? What did you say? (I thought she said cancer was a gift)
>Dietitian: Cancer is a gift. Most women die of heart disease not breast cancer and this experience will give you the opportunity to change your lifestyle so that you don’t die of heart disease.
>Lulu: cancer is not a gift. A gift is something given freely without a payment. Cancer is going to make me pay and pay and pay. Cancer is a disease like Ebola, multiple sclerosis, Parkinson’s and Alzheimer’s. We clearly see things differently.

*Lulu leaves.*

On reflection, I believe the dietitian meant that a diagnosis of cancer can be a wake-up call to change your way of life to improve your heart health. I resented this assumption on two levels. First, I made a bit of a judgment that this overweight unfit dietitian was not committed to a heart healthy lifestyle. Secondly, my lifestyle did not need changing. I was a lifelong vegetarian, exercised every day and have never been overweight. I did not drink or smoke or use illegal drugs. If she had read the chart in front of her, she would have seen that my heart health had been assessed and found to be extremely healthy. I was wallowing in a cancer diagnosis. Heart disease was the furthest health issue from my mind.

However, more importantly, there is no evidence that a health scare results in long lasting health changes. Sometimes we might make immediate changes but then gradually slip into our old ways. As Lance Armstrong wrote in his book, It’s not about the bike, a short while after his recovery from stage IV testicular cancer his good intentions to take more care of his health had already lost ground. Cancer Epidemiology, Biomarkers & Prevention published a survey conducted on 3000 cancer survivors. The study estimated that only one-third of patients diagnosed with cancer quit smoking – even when smoking was linked to the cancer. The power of the feel good chemical soup in our brains has a much stronger pull then the long term sacrifices being asked for on the uncertain promise of more time. So they reach for the chocolate cupcake and feel the dopamine rush.

We scorn the holy water superstition that surrounds Ebola but we heap superstitious nonsense on a cancer diagnosis. Despite our great western education, there is a lively market for crank cures and romanticized metaphors. When we wrap breast cancer in pinkwash and positive thoughts, we deny the urgency of the direness of the situation. Can you imagine someone saying that Ebola is a gift because it gives you the opportunity to learn to avoid bodily fluids of others?

Cancer has not taught me to be a better person. I still feel an overwhelming compassion for the chronically mentally ill. I am impatient with the primitive state of medicine, but then I am more impatient and faster to anger in general nowadays. I am especially irritated with people who catastrophize trivial events or refuse to help themselves. I have no tolerance with people who complain about maladies like a headache and then say they don’t like to take drugs when I offer them a Motrin. Just stop whining. Nobody cares. More than ever, I resent anyone who wastes my time. I have never had a particularly high tolerance of fools but now I have none. My sympathy bar is set to life or death.

I defend your right to express how your disease makes you feel but not your right to tell me how I should feel. Since when did it become my responsibility to make others feel better about my early death? Some may enjoy the attention that a serious illness might bring. I don’t. I would give anything to slip back into an ordinary life. I do not have a stage 0 cancer scare, or Munchhausen syndrome or clinical depression. I am anonymously dying and I am not celebrating it.

Why do they say that?

Update clinical trial cycle 4, week 3

This update is a little late. I’m went straight from San Diego Comic-Con  to Orlando LeakyCon. My serious need to live while I can calls for forgoing rest. San Diego Comic-Con is quite the most fun there is to be had on planet Earth. I have had the most hectic and enjoyable four days of my life. Other than taking my drugs at regular intervals, I never gave stage IV a thought. The way I see it is that the cell changes that are happening or not happening are independent of my thinking or not thinking about it. Leaky-Con is a lot smaller but hectic because you have to keep up with the chaos. It helps to have a really high tolerance for disorganization and mine has pretty much reached the limit. It is easily the most helter-skelter con I have ever been to and probably the last one I can endure the unpredictable disorder. My uncertain health gives me enough of that without having to deal with LeakyLines that go nowhere.

The good news is no new pain or symptoms from the disease but the toxic side effects are getting worse. The diarrhea is controlled by the tincture of opium which is the good news. The bad news is that the taste makes me gag. It is quite revolting. I have to measure .6 ml of the drug into a syringe (a process my daughter affectionately calls “shooting up”) and then squirt it into my mouth. I have to do this every 4 – 5 hours. I cannot miss a dose. I have to eat 30 – 90 minutes after each dose and at no other time. The new side effect from MLN028 is that the nausea I had before has escalated to vomiting. It is abrupt and I have little warning. The oncologist prescribed a very powerful (read expensive) drug for this that works remarkably well. Thank goodness for health insurance. It costs over $1500 for a 15-day supply. Of course, it also has its very own side effect of making me very sleepy. Driving after taking it would be very bad. As it is, I found myself nodding off during some interesting panels.

***

Now onto my thought for the week.

We are only given what we can bear and other stupid things people say.

We are always so astounded that people can be so unfeeling. Why would someone respond to our diagnosis of a life-limiting illness by saying that we are only give what we can bear? With one startling sentence they have trivialized the pain that we cannot minimize. We have been told that our lives are going to be ripped from us in pain and nausea and that is the best that you can do?

Being told that your life is about to end is one of the most devastating events people will ever experience. No matter how shocking and painful it is for those around us, their grief is no match for our own. We grieve for a life cut short, the future we planned, the milestones we will miss. We sob in the shower and wake up at night crying. We feel completely unhinged and time takes on a new meaning. We beg our doctors to inflict any amount of pain and discomfort to give us another month, or year if we are very lucky. We seek solace in drugs to reduce our anxiety and some turn to prayer or television or other activities that distract us from the inevitable end that is already in sight. The full stop that adds the final punctuation to our lives has already been written. And for comfort we get a trite saying?

Sometimes the saying comes with a God thrown in somewhere and this provides a partial explanation for the origin of the saying. The origin is probably Biblical but taken out of context. The Bible contains passages that, when read in context, tell us that there is no temptation that is more than we can bear. It is somewhat of a leap to go from temptation to cancer, but making leaps in inference is something humans are really good at.

So why do people do people actually say things that are clearly inconsiderate and even unkind? I’m sure there are a number of reasons. I will discuss a few.

1.      People tend to repeat sayings they have heard. It is part of our social transmission of information. Just as we learn to fear things such as snakes and spiders by observing the fear in others, we learn to say and do what others do in situations. Repeating things saves us from thinking of something new to say. There is a feeling that if everyone says it, it must be true.

2.      Repeating sayings like this is an example of making an attribution error. An attribution error occurs when people incorrectly attribute a reason for a behavior or situation. In this case, it may be due to the defensive attribution hypothesis, the belief that cancer could not happen to them because they do not fit the profile, they are not strong enough to bear it. It seems such a stretch that anyone would think that only those who are uniquely qualified to be victims of cancer, can suffer through it, but that is what they have just said. People might also be using an explanatory attribution in which they are making up an explanation for events around them that they don’t fully understand to protect their self –esteem.

3.      Protecting self-esteem may be explained in part by the self-serving bias. The self-serving bias is in full swing when we reinterpret facts to preserve our self-esteem, or the need to feel good about oneself. The classic example of self-serving bias is the student who attributes good grades to his or her own hard work and intelligence but blames a failing grade on the teacher. People can protect their self-esteem and their own fear of serious illness by making up a reason why it could not happen to them. This reason enables them to live without the fear. In some ways, the self-serving bias is perpetuated by news slices that provide incomplete information to the public. People might read that eating red meat causes breast cancer. Of course, what is should read is there is an association between eating red meat and breast cancer. Now, someone might read this and think that they very seldom eat red meat so will never get breast cancer. They don’t stop and think about the other implications, such as, this is self-report and relies on memory, it is a correlation and not causation, we have little information on the influence of diet on breast cancer, or even the multiple causes of breast cancer, etc.

How do I respond to being told that we are only given what we can bear? I say that if that were true then there would be no need for drugs, or alcohol or nicotine or any mechanism people use to escape their circumstances of what they have to bear. I say that if that were true there would be no suicide. After all, I really think that your self-esteem might need a reality-check and I am happy to provide it for you.

 

My use of Twitter

Firstly. A quick update on clinical trial MLN 0128 for those (including me) who keep track of things like that.

I’m almost through week 2, cycle 4 and the toxicity has definitely reared an ugly head. I would hate to have to stop the clinical trial because of toxicity when the drug seems to be working so well. Scans in two weeks will be the proof of that.

I can easily deal with mouth ulcers and nausea but unpredictable diarrhea and vomiting make it difficult to go anywhere and get work done. So far, I have been prescribed drugs to deal with both - with some effect. I have good days and not-so-good days. Next week, I am off to San Diego for Comic-Con with my daughter. I mean, seriously, how is one to live life furiously in the bathroom all day?

 *********

I love Twitter.

This blog was inspired by Marie Ennis-O'Connor ‏@JBBC who tweeted about the power of the #narrative. This is my Twitter story.

I have had a professional Twitter account that I have used to exchange information for years. I opened a personal account to explore my many interests. Just because a stage IV diagnosis occupies so much of my life, it does not mean that I am ready to make it the center of my life. Twitter gives me a chance to interact with others who understand my situation and it links me to the stories of those who have different, often more difficult, lives. It is a source of information and encouragement.

Consequently, I follow interesting, inspirational, and amusing people and organizations. The examples below are just a few examples from my recent Notification page. I like to follow those who make me laugh (Sarcasfun ‏@sarcasfun, Matt Harrison @TioMatteo), those who are caring (Matt Harrison @TioMatteo, CHERYL MCDANIEL ‏@MCDANICS ) and those who are going through a similar situation (Jo Taylor @abcdiagnosis , Susan Rahn @Stickit2Stage4, summar_breeze ‏@summar_breeze).

I follow topics that interest me, such as, technology news (CNET @CNET), video (wolfkrow @wolfkrow ) comics ( wunderman comics @WundermanComics), books, movies, more comics (The Fitzroy ‏@The_Fitzroy) and health news (Yale Cancer Center ‏@YaleCancer). I follow those who encourage and inspire (Inspire @teaminspire, Wisdom Way ‏@wissssdom). But let’s face it, there is a limited number of quotes you can read a day. I prefer people who “do” rather than talk.

I have had enough conversations about following back to know that some people have strong opinions.  I don’t. I think it depends on whether you think Twitter is a broadcast or interactive medium. I follow back if I think I will be interested in reading the tweets unless this just seems to be a game of let’s follow each other and boost our mutual number of followers. If I follow someone, I read their tweets though I may block retweets if they seem to be unable to filter their retweet buttons. If I do not find their tweets interesting, I unfollow them. Simply following users so that they will follow you back seems like a rather pointless game.  Why would I follow thousands? I can’t read all their tweets. If I am going to just mute them, why not just unfollow? Since when did the number of followers become a lame competition? It is for that reason I quickly unfollow anyone who tries to sell me followers or who offers to teach me how to get more followers.

Consequently, I follow people without the expectation of being followed back if they have unique interesting information. My tweets simply will not interest them although theirs interest me. However, I do feel that Twitter is an interactive medium. It’s not like writing a book. If you have a compelling story and if someone is only interested in telling his or her story without providing support to those who are also going through a bad time, that seems a bit narcissistic, don’t you think? I don’t find that acceptable in real life and so why would it be fine in social media? If a book rep came to my door with a list of books to sell and never checked the subjects I teach, he or she would not sell a lot of books.

I never read any promoted tweets and don’t follow anyone who is promoted.

I have no interest in politics but love world news, but I unfollow those who won’t let go of an agenda.

I’m in awe of those who can draw.

I unfollow those who repeat tweets constantly, especially if they are in all caps. I understand why having a mantra is important to get you through a difficult situation but without a context, it starts to sound like a stuck record even if it was initially interesting.

I unfollow those who tweet mostly in a language I do not speak

I never bother with true twit validation.

I find the apps that can take over your account creepy. I should not have to go into the settings to get control of my tweets again.

To those who are listening to me and distracting me on Twitter, thank you. It is not easy to come to terms with the closing circle of life but with your help, it is bearable most of the time. If I did not mention you specifically, it does not mean that I don’t appreciate you. I really do.