The gift

December 20, 2011

One of the most difficult things about being homebound with a serious illness (or two) is remembering that (most likely) things will get better.  That you will have enough energy to go up and down the stairs again.  That you will be able to play with your children again, and not just from your pillow or your chair.  That you will soon put away the oxygen, and plan days that include leaving the house.  That you will be able to do, and see, and go … and be YOU again.

The past two weeks have been terribly hard for me.  I don’t do sitting well.  I tried to fill my days with learning about my new tablet computer (love it!), with reading classics (like Andrew Lang’s Blue Fairy book – did you know that the real story of Sleeping Beauty has hardly begun when she is woken with a kiss?  In fact the whole castle awakes, and they don’t live happily after – there are ogres!), and with keeping up with the latest on Slate, Salon, HuffPo, and the Daily Beast.  But those diversions were not nearly as fun as they could have been had snuggling into the soft recliner and reading been a choice.

I just wanted to get up and do things again.  Encourage my kids with games and playtime more of the afternoon instead of just homework and learning in the half hour after school.  Eat dinner with my family (I collapsed in bed at 4 or 5 p.m. most evenings, exhausted from the day, and nauseated by warm food after the chemo).  Work on my computer again, catching up on what I’ve missed, and plotting new work for the spring.  Make and address all those Christmas cards (Will they make it there by Christmas now? Who knows?).  But my body didn’t cooperate.  It wanted to sit.  Or sleep.  And the cough just wouldn’t go away.  Every time I went upstairs – or over to the fridge, even – I had to rest, lie down, and use oxygen to get my breath back.

And then, Sunday night, Marty came to visit.  The novena my church family is saying neared its close.  We continued our family time for Advent.  I finished the pill bottle of antibiotics, and I began to recover from Thursday’s chemotherapy and bone strengthening infusion.

That night we talked and talked and talked, well into the wee hours, and when I tired we went upstairs or put my oxygen on.  But Monday — I can’t explain what happened Monday, but after talking in the recliners downstairs for a while, I got up and began to fuss with my fish tank.  It had suffered during my illness too – you can barely see the little guys through all the muck on the walls!  We talked and laughed and scrubbed the walls.  We scrubbed algae off the glass, walking back and forth to the utility sink, and we laughed when Marty almost dropped the tank hood onto the Science magazines below.  We made that sucker shine, and we talked about her getting a fish tank too (before she left, I sent a dozen beautiful guppies with her, sharing new life in my house with hers).  We watched a movie together, The Help, that we’d planned to watch the day of its release in the theater.  We played with the boys, and I comforted Widget after school, when his earache flared, and Marty tried to engage them in a craft.  We addressed Christmas cards, as we do now, the week or two before Christmas, no matter how I’m feeling.  And then we went downstairs and I ate dinner with my family – and I mean ate.  After three weeks of illness, where I lost 25 pounds because I couldn’t even stand the smell of warm foods, I ate a whole dinner, including seconds.  We were up and doing things the whole. entire. day.

And today I feel like a new person.  Wait, that’s not quite right.  I feel like myself again. I woke up this morning ready to go, showering, eating, and helping the boys get ready, starting a blog post when they went to school.  I’m smiling again, and hopeful, and ready to get back on track and start again.  I went to prayer group, alive and alight with the happiness that comes of being reminded that today is a new day, full of possibilities.  Including possibilities of me getting things done again, of games to play and talks to have and maybe even taking Widget to church tonight for practice – for he is going to be in the Christmas Eve nativity with his class!  Today I feel alive again.

I’m bemused by the thought, juxtoposed with the past few weeks, and I laughed out loud as I related it to my friends this morning.  How could such a difference happen so fast?  And yet, it wasn’t fast at all, was it?  It took days of sitting and waiting and resting, weeks of praying, and treatment after treatment at the hospital.  I believe in prayer.  I believe that medicine works and that my treatments will be successful in extending my life and improving the time that I have left here.  Why, then, was I so surprised yesterday that I finally felt like myself again?

On Sunday morning, I sat quietly with my husband before they left for church.  We were grateful for the day, another day granted to us after such a scare at the hospital, and he whispered softly to me with amazement that I was still here, saying, “This Christmas is God’s gift to us.”  Yes, it is, I agreed, and sent him off with a kiss.  We will celebrate this Christmas together with joy, just as we celebrate God’s gift to the world over 2000 years ago.

Like Mama won over cancer

April 6, 2011

Little Bear, worried about a field trip yesterday, “But Mama, I need you there in case there is something scary.”

You’ll be okay, Little Bear.  Mama can’t go today, but your teacher will be there, and she will keep you safe. 

Cuddled in my arms, he asked, “But what if there is something scary?”

Well, there will be, Little Bear, it’s the story of Passover, and Pharoah gets angry.  He’s the bad guy, remember?  But Moses wins.  It’ll be okay, because Moses wins.

From deep in my arms, came a small, confident voice:

“Like Mama won over cancer.”

That’s right, Little Bear.  And we cuddled and were strong together.

I haven’t talked about my cancer with them in months.  But of course they know, since I’m still gaining strength and taking naps in the late afternoon, when the morning just isn’t enough, or when I’ve pushed myself to get work done.  I’m stronger and stronger, but still not close to 100%.

And we have scans on Friday.  I’m nervous, I’ll admit.  But I want Little Bear’s words to be true, one more time. 

I want to win over cancer.  Again.  And yes, I know that’s a selfish hope, to beat cancer a FOURTH time, but it’s selfish in protecting my children.  They’re not ready for me to leave yet, and I am not ready to leave them to grow up in the world without their Mama.

Moments of Joy

December 14, 2010

On the wall in our family room there is a saying: “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”  Now, I’m not one to fall for sappy sentiments (really!), but this one is special to me, and it’s kind of become my motto.  A challenge, if you will, to stuff the goodness of living into every day, to make it a habit, which is actually a pretty cool way to walk through life.

Every day we have the opportunity to make a memory, with our children, with our spouse, and with our friends.  Every day, there is beauty, if only we stop to look for it.

TV with the boys

There is beauty in children – and friends’ children – doing the most mundane activities together, like setting up battles with playmobil castles or watching a little Super Why while their mamas rest.  (Look at that little hand!  Instant friends, I tell you!)

There is beauty in teaching children about caring for pets, even if their pets are only guppies that swim to and fro in their tank, among the plants and their own little castle or Eiffel Tower.  When my three-year-old woke me up yesterday with the news that his blue guppy was sick, the concern in his voice melted my heart, and we went to check him out (okay, after just ten more minutes.  It was still dark outside, people!).  As it turned out, the fish wasn’t sick, but injured, and that prompted a trip to the fish store after preschool, our first venture outside in a week, and the purchase of four more girl guppies so the boys wouldn’t fight over the girls so much.  (That will totally be an object lesson when they’re older.)

Meeting @Stimey's mouseThere is beauty in introducing little ones to new ideas, new activities, and new creatures – in seizing opportunities as they arise.  I was blessed to be able to do this last week, when @Canape visited me and we went over to @Stimey’s for a little while, to see friends and to play Wii.  Baby Colin and I were admiring the mice, and Stimey asked if we wanted to hold one.  Did we ever!  And from that moment, a memory was born, of brave Baby Colin reaching out to pet his first little bitty creature (check out the concentration on his face, and the determination in that little bitty pointer finger!), of a friend encouraging us in exploration, and of me holding Canape’s baby boy, introducing him to something new in his world.  Oh, the memory that we made that day is precious indeed.

And one more memory that I treasure today – the friends who have come by to visit me during my illness, grabbing an easy chair and sharing their latest, talking and quietly keeping me company, which is quickly becoming a highlight of my week.  How often do we get to sit and talk – really talk – with a friend for a half hour?  Not nearly often enough.  The friends who have come to visit me while I’m down are friends indeed, and as I move forward through this battle and the rest of my life (link goes to a survivor story I liked today), I will keep those memories in my heart, and remember how friends gave of their time, their precious, oversubscribed mommy time, to help a friend who was ill and tired of being alone in the house.


December 13, 2010

Somewhat against my instincts toward wallowing in the mud of uncertainty, I have listened to my patient husband and soft-spoken oncologist and followed their advice this week:  Rest.  Relax.  Heal.

I was able to attend two telecons for work, to accept the renegotiation of my NASA contract for later deliverables due to the delays that chemo has caused, and to start – and almost finish – a gift for my eight classmates who reached a milestone as they were accepted into the church last Sunday.  Something moved me to take up needlecraft again, and as I sit patiently and rest, I’m stitching each of them a bookmark to carry with them in their brand new Bibles – the first that several of them have ever owned. (Each has a cross-stitched cross, and a single word: Love.)

We put up the Christmas tree – and by that I mean that C did, while the children laughingly danced around the back and helped him hang the strings of light while I sat snuggled up in my chair with my fuzzy pink ribbon/AGD blanket that was sent to me during my treatment in 2007.  I wear it like a talisman on days that I’m sick, alternating it with the beautiful one sent by friends in Australia to keep me warm and cozy during the same time.  I took pictures of their laughing faces, and Widget took a video of me saying how deliriously happy I was to be decorating the tree with my family this year.  My heart swelled seven sizes that day, and it wasn’t just the Christmas carols on the radio, either.

We’ve kept up many of our traditions, although we haven’t introduced the Advent wreath this year, to my embarrasment, but it’s probably just as well, as Little Bear is only 3 and would surely be fascinated by the flame.  We do have our Nativity up and tell the stories in our quiet moments.  We went to church on Wednesday for the Feast of the Immaculate Conception, prodded by 6-year-old Widget, who reminded me that it was a day important to the Sisters in our parish, so off we went.  When the twelve raised their voices in a song of commitment, I was struck to the very core with the realization that angels do not just sing in the voices of 20-year-olds, or with the cherubic voices of children like the one sitting beside me, hand in my hand, head resting gently on my shoulder.  Sometimes we hear the voices of angels in places we do not expect.

In my church growing up, Mrs. Suzanne Guthrie always sang the same song near the end of the Christmas Eve service: O Holy Night.  (Mel, if you could have heard her sing it, you would have tears in your eyes –)  She sang it in the same high first soprano voice that melts hearts all over the world each December 24th, but she did it so well and for so many years that Christmas just wasn’t Christmas until Suzanne sang O Holy Night.  One of our madrigals, Beth Jones, took over the carol when Suzanne “retired” from choir solos as her voice began to tremble, but it was never really the same.

Oh, and I realized yesterday that I had not gotten an Advent calendar for the children in my pre-exhaustion weeks, and so I turned the problem over in my head a few times until I hit upon a solution – make my own, using a muffin pan and some little giftLego fun!ies I had hidden away for a time when I would need them, and be too tired to go out and buy something.  I put cupcake liners in the pan, filled each with a few new and interesting legos, and covered the whole thing tightly with wrapping paper.  I later found some much prettier versions on Etsy, but it was exciting to me to be able to improvise on the spot, to uphold our family traditions even when I couldn’t get out to the store.  The children opened their first one today and found twenty little white bricks with eyes on them – and spent the next half-hour creating new animals, robots, and space planes with laser eyes.

When they saw what I had made, their eyes lit up.  When we decorated the tree, it was magical – for all four of us.  When they unthinkingly suck their little thumbs as they move the donkey and ox about the Nativity scene, when they jump into my lap, when Widget tells Little Bear, “No, Mama’s too tired, but we can snuggle her,” when we snuggle to read bedtime stories, and when they remind me, “Mama, it’s time for church,” I know that I’m doing the right thing.  As hard as it is not to jump back into work and everything with both feet, that’s not my first priority right now.  Right now, I’m doing what I need to do with work, and making time to make Christmas for my children.  My beautiful, sweet, thoughtful boys. 

And I write this not only for you, that you see what life is like for a woman constrained by illness, but for them, that they will one day see that even in the difficult times, there is room to encourage and appreciate the beauty in ordinary life.  That my greatest joy is my children, and that they bring me no end of gratitude and love, and for them I will do anything – even rest and heal – so that I can write them love letters for months and years to come.

Friendship. Community. Friendship.

August 11, 2010

“Leticia, I’m so tired.”  I admitted it, finally, at 1:00 on Friday, calling my roommate @techsavvymama from BlogHer‘s Serenity Suite, a brilliant idea organized by Heather of the EO and Maggie, Dammit.  I didn’t know Heather before I went, and when I met her, I fumbled it, but I liked her immediately, so I’ll go comment on her blog and hope we connect again.  The suite was incredible, both in concept and execution, and a lot of fine women staffed it this weekend so that everyone had a place to crash. 

I crashed.  I walked in all sparkly and nervous about my talks that day, and then I crashed on the bed.  Someone took a picture.  I was so shot by that point that I have no idea who it was or where it is, and “that is ok.”  I crashed on the bed, and I rested, my body vibrating with exhaustion from the parties the night before (although I was home by 10, Dad), the exhiliration of hearing Maggie and other activists speak in the first conference session, and more than a couple nerves about my two talks that would ensue in the afternoon. 

Oh, and an amazing evening we’d spent working with the American Cancer Society on Wednesday — nearly five hours of brainstorming, talking, and touring Hope Lodge NYC as guests, when I easily could have been a lodger there but for a) good insurance and b) incredible recovery in the week before BlogHer.  It was draining from the start, on this tour with other bloggers who have been touched deeply by cancer, when the host excitedly told us that we would be touring through the rooms during social hour, and we might see Real! Live! Cancer Patients!  We just smiled at each other thinly, recognizing the pain that briefly shot behind each pair of eyes, supporting each other lightly as we toured the facility, which was amazing, and got to understand the host a little better, grateful that she was putting herself out there for the patients, giving us the full tour and trying to help us really internalize a bit why Hope Lodge is necessary.  It is necessary, friends, and it was such a beautiful place.  I hope to talk more about that another time as well.

But let’s stipulate that I was exhausted.

“Leticia, I’m so tired.  I know we’re supposed to be in our panel room by 2, but I can’t do it,” I said, torn in two by the committment and the exhaustion, and I continued to rest as she reassured me and other women came in and out, quietly refocusing the conversation when asked I was due (argh — darn you, aromasin weight gain) and agreeing that yes, BlogHer is exhausting for everyone. 

At 2:20, I lifted myself from the bed, quietly said my goodbyes, and walked slowly to the elevator.  I walked out, in a daze, and ran into @niksmom and @iampixiemama, two friends I’ve met through @stimey.  It was the first I’d ever met them, and I was so delighted, but at this point I was too exhausted to be polite.  I reached out and asked them for help.  “@niksmom, I’m delighted to meet you in person!  How wonderful!” we exchanged hellos, and then I asked, “I’m having trouble.  Would you please walk me to my session?” And do you know what?  They did.  With just a moment to consolidate their things, @iampixiemama offered me her arm, and she supported me while I walked to my session. 

@teachmama @whymommy @techsavvymama @jessicaapiss, taken by @stimey

@teachmama @techsavvymama @jessicaapiss and I waited for the session to begin.  I stopped in to say hello to @dwescott for a second (I meant to go back and talk about science blogging more!), and then walked up to the platform for our panel.  It was incredible. 

Jessica is such an amazing leader.  She prepared questions for each of us in advance, drawing us out on the topics we felt most strongly about, and yet rolled with it when it was time for audience questions.  Leticia was so polished, answering questions calmly and clearly, explaining how she parlayed her resource blog into a consulting gig.  Amy, gentle Amy, was strong in the session, telling how she has gathered almost 700 followers for her we teach ning group by providing a free space and emphasizing community.  The panel was incredible — and, just as incredible, The DC Moms were in the front row, cheering us on, but also there to learn more about the resource blogging world, not new to @stimey and her AutMont blog, but hardly relevant to friends like @jodifur, unless she does actually form that radical shoe resource blog as she teased on twitter.

Afterwards, it was time for the Voices of the Year Community Keynote

I was now beyond exhausted.

Amy gently but firmly took my arm and walked me through the crowds to my room.  She  talked me down and gave me strength as she would a sister, reassuring me that my dress was beautiful and the talk necessary.  She politely ignored a brief call to C, and then she gently but firmly walked me down to the ballroom where I would speak.  After a quick stop in the ladies’ room, I knew that I had no time at all to make it to the stage, as the Community Keynote was about to begin.  Someone rushed up and said, “@elisac is looking for you! Hurry!”

I was trying to hurry.  And I’m never late like this.  I was just so, so tired.

I walked past friends at the entrance.  They wished me well.  I asked for help.  @mommy4cocktails dropped everything, took me by the arm, and walked me up to the stage.  I could barely see straight, I was so tired.  @elisac and @mrs_kennedy met me at the stage, asking, “Are you okay?”

“No,” I said.  “I am not okay.”  As they walked me backstage, it all spilled out.  “I am not okay.  I am exhausted.  I was supposed to start chemo last week, but I was not strong enough.  I’m not strong enough for this.  I’m sorry.” 

Shhh, they told me.  Sit.  Rest.  And I did.  I sat there, trying to pull myself together through the sea of sheer exhaustion.  I urged @mommy4cocktails to leave me, there with the other Voices of the Year.  I’d be okay, I said.  She explained again, and helped me, and then she went to join the others. 

I tried.  I did.  But, I’m almost ashamed to admit, I began to cry.  And just when I was sure I couldn’t walk out to the podium to speak, @jessicaapiss appeared backstage to sit with me.  to comfort me.  to hug me like a sister, patting my hair and reassuring me that it would all be okay.  I knew then that I looked as weak as I felt, but I no longer cared.  I just wanted to be home.  In bed.  Recovering from the last treatment, and resting up for the next. 

And then, they called my name.  @jessicaapiss and @elisac helped me to stand.  @tech4moms wished me luck.  I walked out into the lights, stepping carefully so I wouldn’t fall.  I looked at the sea of faces for a moment, wishing I were stronger, and then I saw them.  The DC Moms.  @parentopiadevra was sitting right up front, with @minkymoo and all the rest.  @lauriewhite was over on the left, taking pictures as she does so very well.  Someone nodded at me, and I began to read.

At one point, I faltered, and @delora’s sweet baby C began to cry.  I took heart from that cry, remembering why I was doing this at all, and I finished my talk, nodding with gratitude at my friends when I talked about the wall of support that they, and @canape, and so many other women and men throughout the blogosphere had formed around friends who are suffering.  I spoke the last words, looked at them, and @mammaloves stood up, tears in her eye, thinking of her bestie with cancer, I’m sure, and together we remembered the path that we had walked, separately and together.  I blew The DC Moms a kiss and left the stage.

After everyone finished speaking and I celebrated briefly with the front tables, @mommy4cocktails took my arm and ushered me through the crowd to the elevator, almost pushing me in the first one (thank you), and got me settled upstairs in bed.  She insisted I change clothes.  She brought me water.  She told me it was ok, and that I should rest.

I did rest.  I had no choice.  After a while, I rested next door, laying across a bed while the girls got ready to go out, and I smiled and smiled and smiled.  I had asked for help.  They had given it.  And the post I read rang true again. 

This is not about my story.  This is about our story.  A story of friendship.

Decision Time

July 28, 2010

In just a few hours, I’ll be heading back to the oncologist for the results of my post-radiation PET scan, chest CT, abdomen and pelvis CT, bloodwork, and the report from my radiation oncologist.  We’ll finally find out whether the surgery and radiation killed the cancer cells in my body, or if they’re gearing up for another fight.

Whether BlogHer 10 will be all sweetness and celebration for me, or not.

Whether I can move on and go shopping with my friends this weekend, or not.

Whether I will get stronger and stronger as I have been the last several weeks as the radiation effects wear off, or not.

Whether I will get the chemo pill, or go to the hospital for the chemo infusions through a port in my chest every week or three.

Whether I will …

Oh, forget it.  You know what I’m saying here.  Big day.

I almost ended up going to cover President Obama’s speech at the National Urban League Conference tomorrow morning, squeezing it in just before my appointment, but I’ll simply be too nervous and too focused on getting there, so I passed at the last minute.  Justice Stacey,  TechSavvyMama, Minky, and Amanda will do a GREAT job in the blogger pool, and I’ll just tootle on down to the hospital for my appointment.  (You can watch the speech online here at 8 a.m. EDT, or check their blogs later tomorrow.  Very cool.)

I’m expecting very good news tomorrow (what else can I expect?), but until I hear the good news from my oncologist Herself, I admit I’ll still be a little nervous.

A little.

This week was a good one.  I spent a few days up at my mom and dad’s house with the kids, helping them have a good ol’ fashioned small town summer, complete with a trip to the fair.  We petted pigs, stood nottooclose to the cow wash, heard the goats complain about their pens, and watched the sheep look at us funny with those little tufts left on top of their heads.  And then, Iamnotmakingthisup, we watched a goat show.  The 4-H kids were showing the young goats they had raised, and the judge was calling out the results and the rationales at the end of each round like an auction caller. 

The children were fascinated.

And then, they climbed on the tractors.  All of them.  All sixteen hundred of them, as far as I could tell, as they test-drove-in-place machine after machine as if they were making a purchase, my little city boys.

We had a lovely time.

If I were Stimey, this post would be filled with pictures (and humor).

I’m not.  It’s not.  I’m just a little nervous about tomorrow.

Decision time.

On the cutting edge

July 21, 2010

No, this post is not about fashion.  Or the latest smart phone technology.  Despite the many guides to BlogHer popping up around the internet, like flowerpots in my neighbor’s yard, this post is not about who will be wearing what to what parties, how best to multitask with other conference participants online while sitting in the same room, or how to leverage your writing into a fulltime job. (Although now that you mention it, yes, I will be reading those during my downtime later today.)

This post is about being on a different cutting edge — the cutting edge of research. 

Since I was very young, I wanted to work at the cutting edge.  To be a scientist.  To explore space.  To travel to laboratories and conferences across the world and talk with colleagues.  To think deeply and to put concepts together that no one had ever done before in quite. that. way.  To push the edge of research just a little farther, in just a little different direction, and to make a small (like isotope small) but new contribution to understanding the universe in which we live.

In my plans, though, it was about devising experiments using my brains, not experimenting with medical treatments with my body.

Since my recurrence in April, I’ve been obsessed with the latest research, the latest hopes, the latest drugs and hopes for a cure for my inflammatory breast cancer.  I’ve read the articles.  I’ve parsed the studies.  I’ve talked to oncologists here and specialists in New York at one of the premier cancer centers in the world – Memorial Sloan Kettering.  At Sloan Kettering, I met an oncologist I respected deeply (from his work on IBC), a junior doctor doing fascinating research (on mothers diagnosed with cancer during or shortly after pregnancy), and we went over the latest studies that showed new hope from a drug combo still in development.

On the cutting edge.

Avastin was hailed in 2008 as an amazing new drug, the first shown to postpone the recurrence of cancer when combined with more traditional chemotherapy.  Avastin took a different approach, and so it could be combined with the chemos that kill cells as they divide.  (Chemos kill all cells, remember.  Since cancer (and hair) cells divide fastest, they are killed fastest.  Chemo works by trying to kill you.  Since the cancer cells divide faster than cells in your lungs (for example), cancer cells are killed just a wee bit faster than you are.  This is why chemo is so hard to tolerate.  It kills the cancer cells fastest, but it also kills cells trying to grow hair (hence the baldness), repair your stomach lining (hence the nausea and vomiting), and repair your body from everyday wear and tear.)

Avastin was hailed as a near miracle drug, as it starved the cancer cells, aggregated into tumors, of the blood that they needed to grow.  In early studies, it nearly doubled the progression-free-survival time — the time that the cancer survivor could live her “new normal” life without returning to active treatment, and the specialist I met with was cautiously optomistic about its potential.  A number of studies were due to report out soon, he said, and he had just returned from ASCO, where he heard about encouraging news about progression-free-survival time from the researchers involved.  He would recommend that my oncologist add Avastin to my treatment in hopes of pushing progression-free-survival — giving me more time to be “strong mommy” to my little boys.

I pushed back.  I wanted hope, I said.  I wanted progression-free-survival, I did, but didn’t the latest studies also show no difference in lifetime expectancy?  Didn’t they show that, quality of life aside, there was no difference in quantity of life?

Yes.  This was true, he said.  But this was a step.  A step in treatment, and it held promise for people with metastatic cancer, he said, and locally metastatic disease like mine by extention.  We went back and forth over that table discussing pros and cons, and came away satisfied that this oncologist really knew his stuff — and he does, he does — and he recommended Avastin.

We came away from that appointment jubilent, celebrating with a fancy Italian dinner at the restauraunt next door, wondering how many patients had celebrated good news there before us, lifting our glasses ($5 for a diet soda? New York is crazy!) to the new hope that it held.

I meant to blog about it.  I did.  But it was too personal.  Too raw.  Too critical to my treatment to open up to the internets for examination.  So I didn’t “get around to it.”  I told myself that I was just too busy to write the post, that there were too many pictures (Susan happily pointing to the building sign; C lounging on the comfy rest in the elevator; the chandelier and ’50s decor in the lobby) to integrate, that it would be a great post to write later … but I just didn’t do it.

And then, yesterday, an advisory committee to the FDA reviewed the reports from the new trials, held an open hearing, and stated unanimouslythe risks and side effects of Avastin outweighed its benefits when used alongside a chemotherapy drug.”

— Aside: thanks to Liz Szabo of USA Today for tweeting this news, even before it made it into a link on their site

At the end of the day, the results were in.  The panel urged the FDA to revoke approval of Avastin for breast cancer treatment.  The promising benefits of the early studies were not borne out in later studies, and the drug that yesterday was thought to be so promising for the future is no longer being hailed as such.  In these larger studies, of thousands of patients, the progression-free-survival time had not the 5 month increase shown by the first studies, but only one to three months, depending on the study.  And one to three months, said the panel, was not worth the side effects.  Side effects demonstrated in the new studies include significant neurological problems including strokes, bleeding, hypertension, and the like.  These “side effects” are damaging to one’s quality of life overall, making it not worth the extra one to three months that this $88,000 drug (unsubsidized cost) may offer.

The FDA will likely follow the panel’s recommendation.  Doctors will only be able to prescribe it “off label” for breast cancer, which means insurance companies will not reimburse for its use.  The promise that the cancer communities had hoped for has been dashed.

But this is the way that research works, I must remember.  There are breakthroughs, and then there are follow up studies.  Science is not based on hope or miracles, but testing and proof.  Studies must be repeatable with consistent results.  That’s what we learn in science, and why the scientific method that your children are learning is so very, very important.  Science is not magical thinking.  Science is irrefutable.  And if one result is not repeatable, it’s not science.  It’s just luck. 

We need more than luck.  Since the studies now show that this drug will not help patients significantly more than it harms them, the panel is making the right decision.  The oncologists are being given good, science-based guidance.  My oncologist will not recommend the Avastin when I meet with her the week before BlogHer.  And when I come home, I will take a single chemotherapy pill each morning and evening, and not supplement it with this drug, Avastin, for which we held out such hope.