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.