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.

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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?

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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.

Clinical trial update and Gratitude

Cycle 4, MLN0128

 Every four weeks is the start if a new cycle in the clinical trial. On Day 1 of each cycle, I see either my oncologist or the nurse practitioner (NP). I have lasted through the first three cycles which required multiple visits for EKGs and PK blood draws that measure how long the drug stays in my system. From now until the drug stops working, I only need to go once every four weeks. However, I still have to prick my finger to measure my blood glucose every day.

I saw the NP and had the usual blood draws on Day 1, Cycle 4. I had lost 8 lbs. since my last visit three weeks prior. This weight loss was alarming as that translates to about 7% of my total body weight. I have had out-of-control diarrhea for a week, ever since I got back from my convention. I needed drugs to stop it. Now most anti-diarrhea medications are anti-cholinergic which I cannot take.  I have a severe reaction to the smallest amount that results in an ER visit.  The diarrhea was now Grade 3. That means that the drug protocol requires that the patient should take a lower dose of the clinical trial drug. However, after much discussion, the doctors decided that the reason the diarrhea was grade 3 was not due to the drug but my inability to take over-the-counter medication to combat the diarrhea. So I skipped a day of the drug and a gastroenterologist was consulted. Tincture of opium was prescribed. I thought the problem was now solved and I loved the romance of taking an ancient drug because I could not tolerate the new ones. There was something so Sherlock Holmes about it. However, the situation no longer seemed romantic when I tried to get the prescription filled at the usual pharmacies, and was told it would take two weeks. I called the hospital and they had one bottle that they were not permitted to place on hold. I had to drive back immediately and pick it up.

My husband rearranged his schedule and drove me to get it. By this time, he felt that I had had enough of trying to do it all. I finally had the opium in hand at 3 PM.  I took the first dose in the car. By then I was in serious trouble, feeling weak and dizzy. The opium tasted terrible. It comes in a liquid and it tastes like engine cleaning fluid smells. However, the effect was instantaneous.  The cramps stopped and within 30 minutes I started to get that far-away dreamy feeling that you get just before you go to sleep. My husband put on a Beatles CD and life felt very very good.

I went back to the hospital next day to get the all clear for the trial drug. The diarrhea was under control and I had put on 2 lbs. now that I wasn’t quite so dehydrated.

I am taking the opium twice or three times a day and it works wonderfully. Unless there are any nasty surprises, I should be all set for the next month and the two conventions that I am going to.

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 Gratitude for those who care

Although I feel immensely sad at prematurely leaving those who love and need me, there is a special heartbreak in thinking about my darling husband living another 20 – 30 years without me. I am profoundly fortunate to have been deeply and truly loved by one man for most of my life. In May 2013, he was the one with me who heard the words, “Lulu’s cancer is back” and the unspoken, “and she will need you to be there for her.” As I rocked on the floor in grief for my suddenly clipped life, he held me. I could feel the pain coursing through his body, but he never cracked.

I met John at the college fencing club when I was 17 and he was 20. We fenced like we lived. I was impulsive and reckless and he was controlled and precise.  He was good and I was terrible. I did everything with whole-hearted abandon and he was thoughtful and steady.

We were typical college students. My skirts were too short and his hair was too long. I protested while he worked. He brought me joy. I am laughing in all the photos with him. We grew up together and planned to grow old together. We embraced our differences and molded each other. I read everything. He read the sport and business section of the paper. He knew a lot about music. I knew a lot about the Beatles. I was a vegetarian. He was not. He knew how to deal with difficult people I had poor fool-tolerance. He had a perfect sense of direction. I was a spatial idiot.

I qualified as a nurse and he as an accountant. He did a master’s in business and I did one in education. He did another master’s and PhD in accounting and I did a master’s and PhD in psychology. In between, we married, homeschooled our four children, and moved countries three times.

Through everything, John has loved me unconditionally. He puts me together when I sabotage myself. He is a useless critic, praising everything I do. He is not sentimental but gives me cards that are deeply romantic. On his list of contacts, I am Darling. He is not adventurous but inevitably agrees to the adventures I suggest. He hates cherries and does not eat chocolate (go figure), but cannot walk past them without buying them for me.

He is still stoic and I am still emotional. When his brother died, I screamed and sobbed while he held me and let me vent our pain. Then I made tea and he made funeral plans. He watches sport on TV and I have no idea whether it is a game with runs or goals. He still reads the sport and business section of the paper and I read the world news and comics.

He stops to pick up pennies. He is quiet and clever. He plays Sudoku. He has a few beers every night. He hates to be driven. He has never been lost, but writes out the best directions. We run road races together. He races ahead to the finish then he turns back to run with me at my pace. He does the laundry and the grocery shopping. He mocks me for being a bleeding heart when I give away my last dollar and then good naturedly lets me raid his wallet. His students love him.

We still go for long brisk walks together. He walks on the outside, protecting me from wildly out-of-control cars or pillaging pirates but he is helpless against the marauding cancer cells that are causing havoc in our lives.

It isn’t supposed to be like this. I am supposed to be taking care of him, making up for the lifetime he has spent taking care of me. Instead, he drives me when he can, he comforts me, he gets my prescriptions filled and he makes my life the best it can be. Every day he does a thousand things that tell me how much he cares. If one of the ways we can measure the worth of a man is in how he cares for his wife as she lives out her last, my husband has won all the awards.

I have a pendant that has a quote from Rowling’s Harry Potter. On the front it reads, “After all this time” and on the back is “Always.”  

John and I have no beliefs in an afterlife, but when I wake at 2 AM to the helplessness of a disease that is spinning out of control, I can hear his steady breathing and I reach out and touch him. After all this time, he is my always.

Why I run

It is 4:30 AM, July 4 and I am preparing for a 4-mile run at 8:30. I am not an elite runner (nor ever have been) but I have a preparation routine that would rival that of any runner. I have to form an uneasy truce with the side effects of the drugs that are currently stopping the progress of this disease. I have a cup of tea, then coffee, then one packet of organic plain instant oatmeal. Then I run a mile on the treadmill and keep running/walking on the treadmill with numerous interruptions while I wait for my gastro-intestinal tract to call “uncle” and settle down. If you think that I am trying to precipitate a GIT meltdown, you would be right. I need to get it over with. By the time I start my four-mile run on the open road, I have already done four miles on the treadmill.

I am a runner. Running is integrated into my self-concept. I was a cross country runner in high school and have run unless ill or injured ever since.  Before I was a wife or mother or college professor, I was a runner. The only time that I went a significant period without running was when I was pregnant with babies three and four. The strain of 9-pound babies was too much for my varicose veins (which my children promptly called my Borg leg) from month six of pregnancy. For my first two pregnancies I ran until the day of delivery and was back on the road a few days later. My Fitbit measures 14,000 or more steps with at least 30 minutes of aerobic activity every day, a total of 50 to 60 miles a week.

Exercise did not protect me from cancer and it did not keep it from metastasizing. It may have slowed down the progress of the disease and given me more time. And in the end, the most we can hope for is time. However, there is really no good evidence that exercise does improve breast cancer outcomes. The research is based on self-report studies and what we do know with absolute certainty is that about 75% of people (especially women) tend to overestimate the amount of exercise they do. Until they increase the rigor of those studies, I’m taking it all with a huge grain of salt.

I have never been very fast but speed was never the goal. I loved having the power over my body. During chemo I had to run when I could. When I was too weak to run, I walked.  After chemo, my body stopped responding like it did before. My times dragged but I kept putting one foot in front of the other. My mood lifted.  I slept better.

Every year I run a few road races. In April I ran 5k, in May 10k and then on the 4^th of July I ran 4 miles. There are still some races in me before winter and disease set in.  In summer I run on the trails and winter I take to the treadmill.

When I can no longer run, I will have lost part of who I am.

So tomorrow I run.

Leaving a legacy

I have just got back from a convention that was all about leaving a legacy and how we will be remembered by the videos we post online.

There is an old saying that when we die, we die twice. Modern generations reclaim the saying with different words, but the basic premise is the same. We die when our bodies shrug off the mortal coil, but we don’t truly die until the last person who remembers us dies. I think the Internet has given us another way to live for a very long time, if not forever. Although there are a few famous people who have left legacies that have kept them alive, at least to some people, most people have passed through the world living until they died and then being forgotten within a generation or two.

On the Internet, we can leave our writing and our videos to capture our essence for the grandchildren we will never know, the friends we never had enough time with, and to comfort our loved ones when our early departure makes it hard for them to hold onto a world that shifts and slides. The hardest thing about a life-limiting illness is the milestones we will miss. We will not be there to be the handrails that our loved ones could hold onto when life gets too stormy. The videos and photo albums that I planned for some time in the future must all be done now. There is an urgency to post my advice, and document my life. Although I will probably miss their weddings, the birth of their children and all the big and little events of their lives that they share with me now, I can record how I want to be remembered by my children.

I don’t want the only memories to be of the mom who was afraid to ride the best Disney rides because her spine might fracture. I want them to remember when I was whitewater rafting, karate-kicking fearless.

Our legacies are not only in words and pictures.

I have taught thousands of students and written hundreds of letters of recommendation.  I have listened to stories of joy and sadness and shared the happiness and felt the pain long after the names have been forgotten. I have reached out to touch lives and advocated for those who did not have the power to have their voices heard. For each student I have helped to graduate, I have helped raise the socio-economic standard of a family.

Every day I put a capsule of MLN0128 in my mouth. It is a phase 1 trial. Phase 1 means no placebo but the dose and toxicity are being determined by the responses of me and another 125 women. There are some days that my body and I have a stand up fight to go on as the drug does it work. I would be lying if I did not admit that the side effects have got easier to bear now that I know it may be helping me, but they are no less brutal. But this is part of my legacy. If the drug helps a future generation of women, they will not know my name. I am grateful to all the unknown women who tested the drugs that have helped me.

Not all legacies are great. Not all are memories of your name. Sometimes it is just the unsung things that you do every day that tells the world you were here.