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