After the clinical trial

We stopped the clinical trial.  I believe I mentioned that before, but since then I’ve seen my oncologist (the army of princesses came with me, as you can see at left) and we’ve agreed to quit the trial completely, and to stay OFF the meds that made me so sick this year (I was actually bedridden, and layers of my feet kept peeling off… not fun!).  I’m still taking the Femara, which will hopefully starve the cancer cells of the estrogen they need to grow, but the other medicine is gone, and I am actually *gaining* strength and energy every day.

I’m finally feeling like myself again.  Yes, really!  This is a Big Deal for someone living with cancer, and it was absolutely, positively the right decision for us.  No, it is not the best chance we have to beat the cancer back (I think. But we don’t really know, as the medicine combo that was being tested is still being tested for effectiveness, and I *am* gaining strength without it, which has to be a good thing). YES, it was the right decision FOR US.  Stopping the trial HAS given me back my quality of life, and I both celebrate it and guard it jealously. 

…

Something in the morning light reminded me of that long-ago Fall in 2007, as I lay in bed trying not to die of cancer *or* the treatment that promised me new life, as the “red devil” (A/C) chemo took its toll on my body and my hair and even the use of my legs.  I lay in bed in pain and worry, terrified that I wouldn’t even live to see the Spring.  I remember those days, but for now I can just remember, and then put them behind me, as memories of a time that is not now.  Today, there are new buds on the trees, signs of new life, and daffodills at the playground. 

I did live to see the Spring.  I did.  I lived to see Spring 2008, 2009, 2010, and 2011.  Four Springs – and Summers, and Falls, and Winters that I only got to enjoy because of the wonderful and terrible miracles of modern medicine.  And while treatment is never fun and often painful, each step in the treatment has eventually brought healing, and along with that opportunity.  Opportunity to create wonderful memories of stargazing with preschoolers, opportunities to pull back the curtain and start discussions of things that never should have happened, opportunities to write my book about the people of recent space missions, and opportunities to spend time with old friends and new, even those who, if there were no treatment, I never would have even met.  That’s pretty amazing, isn’t it?

This Spring, I live with purpose.  I am grateful for the opportunity, each day, to live.  I laugh with my children and cheer them on when they explore new things – even if it’s climbing a little too high in the trees at the park, or “making soup” out of woodchips and water in the dog’s bowl that we have to clean out and clean up afterwards.  We talk and laugh and cry and dream together — because the terrible treatments have given us a new opportunity to be with and to love one another.

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Things are looking up!

The last two months have been crazy.  Ups and downs and downs and ups and sick and better and laid out flat in bed for weeks at a time. 

… and then better.  As it turns out, my oncologist and the nurse for my clinical trial weren’t bluffing.  I’m not dying.  Well, no faster than anyone else!  I felt like I was dying, sure, but as it turns out, that’s in large part due to the massive dose of experimental drugs I was on, the neutropenia the meds induced, the highly elevated blood pressure, and the kidney infection that I battled without even knowing it for weeks.

Let’s talk about those drugs.  Before a drug is approved for use in the treatment of cancer, it has to pass not just one but several phases of a clinical trial.  When the scan found seven new tumors the first of January, I agreed to enter a Phase I/II clinical trial testing the combination of Nexavar and Femara in breast cancer patients.  This combination has never been tried in humans before, and while there is great promise (due to Nexavar’s succesful use in liver and lung cancers, and Femara’s use in breast cancer patients), there is also no guarantee.  It could stop my cancer from spreading, it could reduce the tumor burden, or it could do nothing.  It could also have terrible side effects that make me feel like death.

Ahem.

So.  Here we are.  Two months out from the diagnosis of my fourth cancer.  90 days after starting the clinical trial (during which I’ve probably only been taking the meds half the time, as the other half I was told to stop taking them and let my body recover, not once but three times).  One month from the PET scan that will tell us whether this drug combo is working to keep the cancer at bay.  Back on the meds, at half the original dose, and pushing myself further each day.  Yesterday I was able to go out for coffee with friends in the morning, pick my kids up from school, and go to the chiropractor for treatment of the pain in my back, neck, and hip, in hopes that some of it is not caused soley by the meds, but maybe just by the general weakness that chemo left behind as a parting gift.

It worked.  I felt better.

And I walked hand-in-hand with my children down the streets of downtown Silver Spring, stopping in to introduce them to the movie theater (verdict: scary!), and then we did something that just two weeks ago I thought I’d never have the chance to do with my children.

We went ice skating. 

Double runners, hand-in-hand, very, very slowly around the ice rink.  It was magical.  If you get the chance to try the new skating rink in downtown Silver Spring before it closes for the season (March 13), do it.  It. was. awesome.

And although I still napped all morning and went to bed at 6 p.m., I did so with a smile on my face. 

I have hope.

Added for clarification, 3/4/11: 
Phase I clinical trials are designed to address the question: Is the treatment safe? These trials are the first time that the drug or drug combination have been tested in humans.  Phase II clinical trials are designed to address the question: Does the treatment work?  A combined Phase I/II trial like the one I’m in is broad-reaching, determining both what level of the drug or drug combination is safe to give patients without severe side effects (hellooooooooo, extreme weakness, feet and hands peeling off, and compromised quality of life!) and whether the drug or drug combination actually slows or stops the growth of the cancer in question.  So this is a high risk trial, in some sense, but it also holds out the promise of high reward – an increase in quality of life and/or an extension of quantity of life over the use of Femara alone.  And that, for me, is worth the risk.

Neutropenia

Neutropenia is a common but yucky side effect that affects about half of cancer patients on chemotherapy or treatment with a biological agent (like Nexavar).  When a cancer patient is neutropenic, it means that her white blood cell count is low and she is much more suceptible to infection.  She is given direction to avoid possible sources of infection, to stay away from crowds, to wash hands and insist that others wash hands before coming into contact with her, and to change her diet to avoid the risk of infection from food. 

All foods must be freshly cooked.  None can come from restaurants or uncontrolled sources.  Bread must be bagged and not homemade.  Cutting boards must be changed between preparation of meats and other foods.  No deli meat.  No deli cheese.  No hand-packed or soft ice cream or froyo.  No soft cheese.  No popcorn.  Nothing from a bakery.  No raw veggies, fresh fruits, except those with a very thick skin (oranges and bananas), or dried fruits.  No spices, salad bars, buffets, or restaurants.

I’m pretty sure the guidelines would say no contact with little children who bring home infections from preschool, but what can I do?  I have two who need me, and one is home sick today.

The Novena

My friends/church are saying a novena for my healing, starting tonight.  Being a new Catholic, I’m only starting to learn about formal prayers like this, but I welcome it.  Colleen will lead us through what to say and what it means over here (or you can download the printable version).  All are welcome. 

It is true, I have prayed for healing before, and so many prayers have been said on my behalf.  I know it gives me strength and hope.  I have faith that if it is God’s will, I will be healed.

…

When we arrived home from the grocery store this afternoon (stocking up on milk and bread before this evening’s storm), there was a hang-tag on the door that said that flowers had been left at the neighbor’s for me.  Surprised, I checked on a family down the street, as they shoveled their driveway with children in tow, and then walked across to her house.  She met me on the snow-covered lawn, holding these daisies in her hands and saying, “They’re beautiful.”

Well, of course they were, and of course we lingered to chat.  We’re two who could easily be good friends, if not for all the things that separate us, not least the six children, mine all boys and hers all girls, that span the ages from newborn to nine.  And yet we hardly ever see each other, and our houses keep each other company while we remain almost-strangers.

Today we lingered, and when she asked, “How are you?” it just all spilled out, how we had gone to get a scan to see the good news that the cancer was gone, but it was back instead, and how I was in a clinical trial and hopeful and positive but still I’d really rather not be here again.  I stopped and looked at her, embarrassed that I had let all that out, for I don’t really talk about it out loud, and she looked at me and said, “My mother has cancer.”  Her mother was just diagnosed with stage 1, a thousand miles away, and she’s suffering through radiation, harder at her age, I’m sure, and pretty discouraged about it to boot.  We stayed and talked, and I don’t think I said anything too special as I answered her questions about radiation, about fatigue, about how to help her mother as she goes through treatment, but at the end, I hugged her, and she clasped my arm and said, “I think the flowers were meant to be.”

As I walked back home, I marveled at how the flowers had indeed already brought me a moment of cheer and friendship, and I hadn’t yet looked at the card.  But when I looked at the card, I was blown away:

Dear Susan, We see the miracle in the beautiful daisies, so how can we not believe that there is a miracle left for you.  We will keep praying as you keep fighting. Love —

And there it is.  Do I believe in miracles?  You bet.  Always have.  Is that incompatible with being a woman of science?  I don’t think so.  And neither did many great men and women through the ages.  I don’t know how it all works together, I’ll admit, but I know enough to know that just because I don’t understand doesn’t mean that it isn’t true. 

…

At school pickup today, a new friend pressed something into my hands, a relic, she said, and told me to take it, along with her prayers, she said.  “I am praying for you,” she said, and she knows that God hears our prayers.

…

After three days break from the treatment, ordered by my doctor because I lost sensation in my fingertips and thumbs on Thursday, I’ve started taking the medicines again.  That’s progress.  That’s something.  And the arms I’ve clasped today, the friends I’ve shared a smile and a hope with, the faith that has been spoken to me today by Catholic and Orthodox Jew, and the very fact that I’m here having a quiet moment with you — well, today has been a very good day.

And as for the princess?  Well, she keeps popping up on blogs, and she and I spent the early part of the afternoon with Little Bear, building a replica of our house.