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?