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.

When I woke up

July 17, 2010

When I woke up this morning, I forgot I was sick.

I rolled slowly out of bed and caught up with my little ones on the stairs.

I made them oatmeal, raspberries, and cheerios, being careful to pour their “mulk” into square glasses as requested (daily).

We ate cheerily and talked about the day. We loaded the dishwasher and went upstairs to get dressed. Halfway up the stairs, I heard myself panting, felt myself slow down, and then stopped, almost too tired to haul myself all the way up. The kids hopped in the shower, but I?

I passed the kids off to C and went back to bed, tired beyond all reasoning, and lay there, so tired, not wanting to move.

Hours later, I got up again, this time walking carefully to my office in the room next door. I wrote for an hour, making nice progress on the revisions for Chapter 6, and then allowed myself to be distracted by the children’s laughter as they told me all about their adventures and carried me away with their dreams.

We took a new puzzle to the big bed and busied ourselves with putting it together, just us. Quiet. Happy. Enjoying each other on these terms.

And it was almost as if I had chosen this quiet life, cuddled with my children, reading story after story, and talking about the day as we did puzzles together.

For a moment, again, I almost forgot I was sick.