Why am I so tired?

According to the Mayo Clinic, “The exact causes of cancer fatigue and how best to treat it aren't always clear.” The website then goes on to list possible causes from the cancer and/or the treatment. Not included in the list is the ongoing treatment for cancer is as much of a time-suck as a second unpaid job. When you already work 60 or more hours a week, you just never seem to be able to come up for air.

Like most people, the demands of living vary by the day or even hour. We stop everything to deal with the current crisis or claims on our time.

A typical day may look like this.

I struggle through the night, beating off the doubts and fears that a terminal diagnosis sends to disrupt sleep. Finally, morning arrives and somewhere between 4:30 AM and 5:30 AM, I let the dog out. She crawls into bed with me and snuggles close. If I’m lucky, I’ll catch a nap. If not, I’ll give up and try to get a head start. The day begins with coffee and a Neupogen injection before swallowing another Kytril and taking the dog for a walk. Time to check work email. Depending on the weather, I then exercise on the treadmill or outside. Getting ready for the day requires an annoying number of rests that slow me down.

I either walk or drive to the station, then catch the light rail to work. By the time I get to my office there are a stream of students waiting to see me even though it’s not official office hours. I triage problems in between getting ready to teach classes. After teaching, I try to squeeze in a sandwich in the scheduled break before official office hours. Mostly, my lunch goes uneaten until late afternoon. The nausea starts to creep back into my consciousness but I figure it will pass so I bypass the Kytril because it makes me feel even more tired.

I see students for academic advising, career advising or just being a shoulder to cry on. I listen to the hopes and dreams and tragic stories that exhilarate and tear at me. I hear the stories of childhood abuse, of rape, of heroin addiction. I try to calm difficult people. My body longs for me to put my head down for just five minutes but those breaks are rare.

There is always another student, another meeting, or another email. Some time after 6 PM, I’m ready to leave. I put on my coat and walk to the station in a dull fog of exhaustion. I stop to vomit because I should have taken a few minutes to take a Kytril.

I reverse the trip from the morning, get home, and take the dog for a walk while my husband rustles up some leftovers for dinner. But dinner is not the end of my day. I do the emergency cleaning, and then open my laptop. I have the next day to prepare for. There will be different students, different heartbreaking stories, different classes and different meetings. There will be research to read, data to analyze, and letters of reference and papers to write. Each event requires a different skill set and different preparation. In between, I can never find enough time to clean and cook, to spend time with my family, to read, and to connect with my friends on Twitter.

Once a week for two weeks out of every three, I make the 2-hour drive and present myself at the infusion center to have my day snatched away as nurses fill my veins with kytril, dexamethasone, gemzar and carboplatin. This cocktail is guaranteed to make me sick and tired but not guaranteed to improve my health. And again, two days later, the chemicals extract their real price on my body and time as I sit huddled on the couch with my laptop open, trying to make sense of the words that swirl on the page. The unique fatigue that accompanies chemotherapy closes my eyes without my permission and I lose another half-hour to a restless nap that came unbidden. Each moment the disease and treatment snatch from me is a moment that goes into my time debt that will paid out of time I would rather spend choosing my activity.

Always, time is the enemy. Fatigue is its indomitable weapon.

How many lives?

These are the anecdotes I love to share with my children to remind them how lucky they are to be here.

I’m not sure if it is just me, but there is something about knowing that I am definitely on my last life that triggers the memory of the number of times, through sheer luck, I have ducked when the grim reaper came to call. And these are just the times I know about.  

The earliest episodes for me are lost in childhood amnesia but the stories were often told.

When I was a baby, my birth mother was apparently mentally unstable. I’m not sure what that means. The description given to me was much harsher. However, in those days stigma of mental illness was even greater than it is now, and treatment was even poorer. I cannot even imagine the demons that were fighting in her head. One day, she just packed up and left her husband and children and disappeared into the silence of a world where you could leave no digital footprint. Over the years, I have truly valued my mental health and it remains an open question if I would have survived physically and mentally had she stayed.

At three years old, I had just been adopted. I was playing hide-and-seek with my siblings one evening while we were vacationing in a remote area on the coast. The cottage we stayed at was near a cliff that plunged about 100 feet in a steep drop to the waves crashing on the rocks below. My siblings went inside and no one noticed I was missing for a few hours. When it came time for bed and I could not be found, everyone went to search. At about midnight they eventually abandoned the search. Next morning, I tottered to the cottage and pointed out the bush I had slept under all night. It was just 50 yards from the edge of the cliff.

I was five or six when my brother and I woke up early one morning to play with fireworks. We didn’t want to wake the parents so we walked a bit away from the house. My brother lit the fireworks and then accidently lit my clothes. In a few seconds, they were blazing. Fortunately, my nanny was not far away and saw me. She stripped off the burning clothes before too much damage was done. I have only a small scar on my side and even that has just about faded.

I was born before the measles vaccine. Now, there is a Zulu saying that you don’t count your children before the measles. I was one of those children who should not have been counted. As I struggled to breathe from a secondary pneumonia infection, the priest was called. My parents were not religious people, but the fear of a child dying without the necessary last rites scared them. The scars left on my lungs have given many a radiologist pause.

No one knows how I contracted infective hepatitis (Hep A) at 11. There were three of us that did in our town. Two were siblings and I had nothing in common with them. One of the siblings died. I was at bedrest for six months. The only long-term effect was that I have never been able to drink more than the smallest amount of alcohol and of course, I was banned for life from donating blood.

I used to work as a surgical intensive care nurse. It was extremely stressful as I dealt with knife and bullet wounds, patients who had been thrown out of moving cars, and regular open heart surgery cases. Sometimes, we were called to give evidence in court.  I never thought of it as dangerous until I was stalked by a man accused of murdering one of my patients. He confronted me in a parking garage and informed me that I was not to testify at all about the patient unless I told the story he would give me. Or else. The next day, I gave a deposition and booked a flight to Europe.

I don’t have fond memories of Italy. While in Italy, I was walking along a quiet road when suddenly a group of young men with knives surrounded me. Fortunately, I spotted an older man carrying a walking stick and I ran up to him as though I knew him. The hooligans melted away. He was from their village.

My second son was a few months old and my husband was driving. I was sitting in the front passenger seat. The little one was strapped in his car seat at the back but he was restless. We were in the middle of the city so I got out and went to sit in the back to distract the baby so that my husband could concentrate on driving. My husband stopped at the red light and when it turned green, checked that nothing was coming and moved forward. Suddenly a car driven by a drunk driver came storming through the red light and hit the front passenger side, crushing it into the driver’s side. We walked away from the accident unharmed but there was nothing left of the car. The police offers all agreed that I could not have survived if I had not switched seats.

I was diagnosed with metastatic breast cancer just over two-and-a-half years ago. Every morning when I wake up, I punch the air in victory. I survived one more day. But I also punch in frustration because my death is just another unnecessary death. So much money collected in the name of finding a cure has been squandered on broken promises. The war we have now been conscripted into is not for our own lives. It is too late for that. We are forced to fight for women who will come after us. We are forced to stand up and say no to the idiotic pink ribbons and expose the scam that will result in 521,900 lives discarded in the wasteland of greed and apathy every year. 

When an ordinary life ends

There is no timetable for grief but the average resilient person experiences intense mourning after the death of a loved one for about seven to twelve weeks. For those weeks, we question the purpose of life, we may cry, we may scream, and we often long for just one more day with the one we lost. And then the pain starts to come less often and without the same intensity. Slowly we recover our momentum and we go on.

I’ve been thinking about that lately.

My husband has been part of my life for my entire adulthood. We have raised our children and cried together with the tragedies that life brings, but we have laughed more than cried. We agree and disagree many times every day but we talk every day. He will face my death in quiet grief as he sits in front of the computer pretending to be busy. He will continue to take care of the children and the dog and never let anyone down. He will be there for them when they call but will likely not call them for help for anything.

My children’s memories will fade and special events such as weddings and babies may trigger mourning but they will forget the Mom I was. They will never remember the nights I spent pacing up and down with a crying baby that could not sleep, the nights spent rocking children through earaches and colds and feeling sick. I remember the events that they will never remember.

 I think about a lifetime ago when I never got the chance to sleep through the night for years on-end. I think about the 12 years I spent pregnant or breastfeeding 4 children. I think about the mindless games I played with them to keep them occupied on long car rides, the trips we took to Disney World and the weekly museum trips two hours from home, the endless rides to activities, and the music / swimming / tennis lessons. I shared my love of Star Wars, comics, conventions and great movies.  I taught them to ride a bike, to drive a car, to care, and to be socially responsible and curious. I taught them to read and love books, to write, to do math, to use technology, to do calculus. I taught them to solve problems and think scientifically and be compassionate. I taught them how to do their own laundry, to cook, to love unconditionally and to never ever be prejudiced. They did not learn everything I taught them but then most of the lessons we learn are honed by life. My son once said to me that his deepest regret was that he could not be a writer because all writers have a terrible childhood and I deprived him of one.

I hope they remember me how I was and not the weak and fragile being I am becoming.

They will mourn for me but they will recover and move on. They will forget what wisdom came from their mother and what they learned from somewhere else. Mostly, they will believe that they learned it on their own and that will be true because that is how we live our lives. Despite the foibles of being human, I always tried to model the best that I could be. I was over-protective, held them to high expectations, and loved them unconditionally. I also trusted that they did their best just as I tried to do mine. They will find others to do the things I do for them or they will just do it themselves.

I have been the department mom to thousands of students. Only some will even remember my name. However, some will remember my endless stories, my encouragement and my hopes for their futures.

 

In seven weeks, memories of those who loved me will start to change. The events and actions in my life will be less meaningful. They will talk about me less. Although I remain alive while they are alive, the intensity of my life will have started to fade in just 49 days.

To paraphrase T S Eliot:

This is the way my life ends

Not with a bang but a whimper.

Update after my October scan

A hassidic rebbe once said, “Let me not die while I am still alive.”

My life has been a blur of work (65 hours a week) and hospital visits and exercise. I keep asking myself why I am spending so much time on work as I’m not even sure if this is my last semester. The truth is that I have always worked like this and I’m making darn sure that I end that way too. Of course, no one at work has any idea of what else I balance to work as I do and I don’t intend to give them any reason to. I’ve had a couple of days when I find it really difficult to haul my butt to the uni but once I’m there, automatic mode and the enthusiasm of youth takes over and I do my 10 hours. And I am grateful for flexible hours, and a job that is not physically demanding.

Living with metastatic breast cancer is a tsunami. We just try to keep our heads above water for as long as possible.

Onto my scan. One delightful word: stable. I stay on the Gemzar and Carboplatin for the time being. My liver disease is the biggest threat I face right now.

A couple of positive changes have happened as well. I got a dog from the puppy rescue. She’s a delightful, energetic dachshund mix. And I do not understate the mix part. She is part of many breeds but although she is only six pounds of love at five months old, she has the speed of a greyhound and all the hunting instinct of a dachshund. She follows me around everywhere – no quiet bathroom breaks allowed. She also drags me out of the house in all weather for morning and afternoon mile walks. Well, she tries to make it a run but right now my hemoglobin is so low that I can barely run a few steps without struggling for breath. (Aside: My hemoglobin is not low enough for a blood transfusion yet, but it’s low enough for the infusion center to have to get permission to treat. The blood transfusion cut off is below 7 (or else symptomatic) but the infusion center cut off is below 9. Mine is 8.1 and sliding down.  I am never going to admit to the doctor that I can no longer climb a single flight of stairs without grasping the railing as though I have had a bit too much fun and waiting for my heart to slow to a manageable pace. I fondly remember just a short time ago when I could run up seven flights of stairs without a pause.) I still walk 50 miles a week outside or on the treadmill of course. That remains my priority.

The second bit of good news is that I got insurance permission to give myself neupogen at home. This saves me driving for two hours 10 days out of every 21. Now, I don’t understand insurance at all. It costs thousands more to have the neupogen in the infusion center than it does to give myself the injections at home, but if I have it in the infusion center then I have no co-pay. However, if I give myself the neupogen then I have a co-pay of $125 every three weeks. It’s the same puzzle I had over my prescription for dexamethasone. The insurance initially denied it, but after protest they approved it. When I went to pick it up at the pharmacy, I saw that my co-pay covered the entire cost. They had denied me a drug that I needed that actually cost them nothing.

The worst news of course was that I had a port placed. This is an outward symbol that I have moved from living with breast cancer to dying of it. It is incredibly painful as it is situated over a nerve that unexpectedly launches shooting pains across my chest and down my arm, paralyzing the right arm for a few seconds. Sometimes the pain is so bad that I have to sit down before I faint.

From the Mom the stress-o-meter department came a bout of sheer terror. My son had major cardio-thoracic surgery and was in hospital for a week. We had some scary days and nights, but he is home now on heavy pain pills but recovering. He also has a seriously impressive scar across his chest. He has a metal bar in his chest for six months so the recovery is not going to be rapid. It is times like these that I am so thankful to still be alive. This would have been so much more difficult if I had not been around to change dressings and be the Mom. The good news on the children front is that my daughter broke up with her boyfriend. It was not that he was a terrible person but he was clearly just not going anywhere #RichKidSyndrome.

On a wildly optimistic note, I bought tickets for the Harry Potter show in London for December 2016. However, I am a realist and made a backup plan in the likelihood that I won’t make it. My husband said that the tickets were something to make sure I was alive for. I gently reminded him that survival is not due to force of will. 

Surviving October

I actually wrote this two weeks ago but am so caught up in trying to live that I never got a chance to post it.

As I trudge through my next cycle between scans, I’m intensely vigilant for new symptoms, real and imagined. Of course, as the middle of September rolls around, I’m on high alert to be insulted by a barrage of pink. I passed a student with a t-shirt emblazoned in pink with “Volley for the cure” punching through my polite passageway negotiation. I stiffened in rage. Not only did that fundraiser not go for a cure but it diverted funds that might have been better spent for a cure.

Classes started in the middle of August so I am again consumed by work and hospital visits. My current regimen of Gemzar and Carboplatin is on a schedule of two weeks on and one off. The first cycle started off well. My blood work was fine and I had the first dose. However, when I went back a week later for the second dose, my WBC count was so low that the infusion center had to call the oncologist before they could administer the chemo. I was sent home feeling like I really had been hit by that proverbial bus. The bouts of nausea and vomiting at unexpected times are a constant reminder that I am caught in the outer edges of life, hovering in that no man’s land between living and dying.

Two weeks later, I again presented myself of the nurse visit and blood work. This time, I was not so lucky. The oncologist said no chemo and I was told to go home and come back in a week. This did not work for me. I marched up to her rooms and saw my favorite nurse and asked her what could be done. She talked it over with the oncologist and they settled on a daily dose of neupogen for seven days. 

That is now my life. Chemo and neupogen injections mean hospital visits 12 days out of 14 and then seven off.

I’m now on my 12^th and 13^th different drugs to combat this disease. Some have worked for years and some have not worked at all. The last three scans have showed progression as three sets of treatment have failed. For over a decade, I have lived with side effects that mimic medieval torture.

I have known vomiting so bad that I lay on the bathroom floor all night because there was no rest in between episodes. I have lost all my hair. Nausea is as part of life as endlessly shedding toenails. I have lost every nail on my fingers and toes and my toenails so many times, there is rarely a period when I have all of them attached. I have had my skin on hands peel off in shreds. I have had giant blisters randomly appear on my feet that caused me to scream in agony when I took my shoes off. I have known what it like to crawl on my hands and knees to the bathroom because I could not walk. I have had diarrhea that caused me to lose 10% of my body weight – so that a scant 95ibs hung on my 5ft 6in frame. I have known joint and muscle pain that crippled my legs so I could barely walk. I have experienced fatigue that required me to leave an extra hour just to shower and rest and get dressed and rest. I have been so dehydrated that I fainted on the street. I have pins and needles in my hands and feet all the time. My nose bleeds at random intervals. I have felt broken so many times that I thought I could not go on.

We do not need more treatments. We need better treatments. We need a cure.

Living life in increments of 12 weeks. Part 1

The period between scans is 12 weeks and so I can only plan for the next 12 weeks. I never know what the treatment will be for the 12 weeks after that which means I cram the rest of my life into these tiny gaps of time.

I’m also suddenly aware that I am one step away from a catastrophic episode that could end my life.

It feels like a confession every time I sum up to myself what it took to live those 12 weeks. Since my last scan I have lived the good, the bad, the ugly and the insanely normal.

The bad list reads like this:

1. My dog died
2. The immunization trial failed so I went onto Xeloda
3. The Xeloda failed and my next 12 weeks will be on Carboplantin/Gemzar (IV chemo)
4. The burden of watching your life slip away feels so heavy at times.

The good:

1. I took a trips to
1.  Seattle to visit my daughter and my good friend Beth (@CultPerfectMoms ).
2. Johannesburg for a few days on my way to
3. Safari in the Kruger National Park in South Africa (where I met some wonderful people).
4. Mauritius with my husband (home of the dodo)

1. I collected another 60 or so books from Comic-Con to read
2. I ran
1. The Bolder/Boulder 10 k run with husband
2. the 4-mile 4^th of July  run with husband and third son
3. I wrote
1. a paper
2. a short screen play
4. I went to San Diego Comic-Con and the San Diego Zoo with my husband and daughter
5. I went to VidCon in Anaheim and then spent two days in Disneyland/California Adventure parks  with my third son
6. I went to a psychology conference in New York City and visited my eldest son who calls every single Sunday night.
7. I took about 10,000 photos and lots of video. (Wait! That should probably go under insanely normal.)

The ugly:

1. My feet and hands look as though they have been through medieval torture. Most of my toenails have fallen off or are about to.
2. The toxic effects of Xeloda kept mounting up until it included high blood pressure, and nausea and vomiting.
3. I was bitten by a brown recluse spider

The insanely normal:

1. I did Hangouts with my far-away children, called them, texted them, and went to movies and dinner with my family when they were around.
2. I watched my second son complete his first triathlon
3. I exercise every single day to the best of my ability given the condition of my feet. (This one is insanely normal and good.)
4. I walked/ran 600 miles
5. I read
1. Alan Turing: Unlocking the Enigma by David Boyle (for the second time)
2. How Google Works by Eric Schmidt, Jonathan Rosenburg, & Alan Eagle
3. Genghis Kahn and the Making of the Modern World by Jack Weatherford
4. The Martian by Andy Weir
5. 101 Kruger Tales by Jeff Gordon (Editor)
6. Comics, comics, comics. I’m not apologizing.
6. I cooked, cleaned, and baked bread a few times a week
7. I planned for the next 12 weeks
8. I was a professor, a mentor, a friend, a wife, and a mother.

Not for the squeamish: Case study of urea for hand and foot syndrome on Xeloda:

Xeloda update.

(More Pics coming soon)

This drug has definitely brought me to the edge of despair. I know I should be sorry to say good-bye to it but quite frankly, it was not worth it for me. This is not easy to admit because I am stoic and can endure but I still have to live my life and go to work every day.  Good-bye was far too easy.

• Flossing teeth can result in a nasty cut on the hands as everything tears through the skin.
• Washing hair is best done with gloves on because the hair catches on loose skin, tearing it.
• Bending your finger causes the crease in your finger to open up into a painful gash.
• A bit of paper on your finger turns out to be shredding skin. It’s best not to pull on it.
• A run tears up your feet so that walking for the next 5 days feels as though you have broken glass underfoot – trapped in your socks.
• The infernal tingling and burning comes on at the most inconvenient times.
• Popping open a lid requires a knife
• If you have no one available to unscrew the lid of a bottle, you go thirsty
• You pick up everything that may be remotely hot with a cloth because you cannot feel if you are burning.
• You cannot go to the hot tub – no soaking.
• Showering burns your hands and feet like the devil.
• If something slips through your fingers, it’s going to cause a great deal of pain. 

I pick up the toothpaste and balance it in my hand, trying it out, rolling it in my palm until I find a spot where I can squeeze the tube without causing pain. But I can’t squeeze hard enough. I’m going to have to collect a tool but my husband is there so I ask him to do it. I marvel at the way he takes the tube and easily squeezes, asking how much I want.

I watch him effortlessly open a can with a can-opener and remember that I used to be able to do those things.

What I wish I had known and special thanks to @groz_P

I wish I had known about Revitaderm with 40% urea. It’s available from Amazon without a prescription. It softens the skin so no more blisters. I hated pricking those never-ending blisters that always formed. I put it on twice a day and over it, I put on Sudocrem. I have to get that from the UK, It’s a nappy (diaper) rash treatment. According to the nurse (who asked a pharmacist on my behalf), urea softens the skin so that other treatments can penetrate through the skin. That’s why I add the Sudocrem on top of the Revitaderm. It softens and heals. However, it does nothing for the toenails and they keep popping off like popcorn in hot oil. OK, that has put me off popcorn. Ignore that comparison. 

The skin still peels horribly but I no longer have to keep putting on hundreds of Band-Aids and dressings. I just have to add gauze to the most painful areas. I very rarely get to wear regular shoes. I found a pair way too big for me and carefully arrange cotton padding around my feet.

In between I use shea butter to moisturize and I love my white gloves.

It’s been a week now since I stopped the Xeloda. It will probably be a few more before my hands and feet heal. All I know is that I could not go on like this. Every task was an effort so that I balanced whether it was worth it or not. 

The cost of a quiet walk.


Nasty pictures below:

After 1 day
Before treatment

When a pet dies and you are dying

There is sorrow enough in the natural way
From men and women to fill our day;
But when we are certain of sorrow in store
Why do we always arrange for more?
Brothers and sisters I bid you beware
Of giving your heart to a dog to tear.
-Rudyard Kipling

Until one has loved an animal,
a part of one's soul remains unawakened.
-Anatole France

The fidelity of a dog is a precious gift demanding no less
binding moral responsibilities than the friendship of a
human being. The bond with a dog is as lasting as the
ties of this earth can ever be."
- Konrad Lorenz

I hear a scratch at the door and I walk towards it, but it is just the wind. I see her on the couch and my heart leaps, but it is a shadow. I feel a movement at the foot of my bed and I bend down to pat her, but the pillow is empty.

There is a saying that when one door closes another opens. It reflects the choices we make. Sometimes there is later regret, but most often we believe that door is not permanently closed. We can finish our degree or learn that new skill or language later.

When you are terminally ill, however, doors slam and lock closed. We live in the constant unpredictability of a disease where the only certainty is progression. Easy decisions are made difficult. Should we invest in new running shoes, new spectacles, new underwear or even that large size laundry detergent?

Nothing is quite like the crashing of a door blocked by a rockfall that happens when a pet dies. You know with certainty that a new pet will outlive you. You will never have time to build a new relationship. Even the decision to get another pet is ripped from you because you know someone else is going to have to take care of it when you are gone.

You have no time to mourn slowly and you mourn intensely. The grief is expressed in loud sobs that rack your body and soul as you try to let out the overwhelming pain and you wonder why there is so much hurt in the world.

Your friend, companion and treasure has gone. There is no enthusiastic welcome when you come in the door. There is no warm presence that cuddles up on your lap when you are tired or sad or in pain. At night when the dementors come bursting through your sleep to turn the air in your lungs to ice, you reach down to the bottom of the bed where she used to lie and feel for the warmth that would melt the ice and slow the fearful beating of your heart. But the space is empty.

You are alone. 

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.