Bloganthropy and Lymphedema

February 28, 2011

A little bit of good goes a long way.

A couple years ago, two women named Rachel and Robin created a new product – a compression sleeve that they and their friends would be willing to wear to control their lymphedema, swelling in the arms caused by the removal of lymph nodes during a mastectomy.  They started a company called LympheDIVAs; Rachel’s brother Josh and their parents continued to improve the product and market it to other breast cancer survivors after her death. 

Carole lost her cousin Crickett to metastatic breast cancer too, but instead of wailing at the universe, Carole and her aunt Bonnie set up a foundation to help other breast cancer survivors feel good about themselves again.  Carole sent an email offering help to survivors, and one copy landed in Sue‘s in-box. 

Sue forwarded the email to me, offering me the opportunity to be pampered a little, because she knew I was suffering from chemotherapy again, and it touched my heart.  My heart was kinda busy, though, because my physical therapist Jonelle had mentioned casually while working on the lymphedema in my arm that it was so great that I was wearing a lymphedema sleeve to control it — many of her patients couldn’t afford one.  When I arrived home and checked my in-box, there was the opportunity to make a connection and to fix this wrong that lay on my heart — to help others have what I have, the opportunity to control this medical condition at home, without weekly trips to the physical therapist.

Three phone calls later, Josh and Carole agreed to provide donated lymphedema sleeves to patients in need, and the lymphedema sleeve project was on.  The problem then was how to make people aware of the opportunity, so Sue and I sent a couple emails and a few tweets and then The DC Moms and twitter friends and blog friends and friends of friends stepped up to help, to spread the word, one tweet, one post, one update, one person at a time.

I wrote a post, Sue wrote a post, Minky wrote a post, and the news gained traction.  Over 100 people tweeted the links that week.  150 people shared a link on Facebook.  Over 40 bloggers added their posts to ours, in attempt to saturate the internet with the news, so that a woman in need, searching for help to afford lymphedema sleeves or other post-mastectomy gear, could find it. 

Kristen, Jessica, Amie, Joanne, Marty, Victoria, and Elizabeth then put their money where their voice is and donated $1/comment on their lymphedema post.  Others went to donate so that additional sleeves could be bought as needed, and before we knew it, $1518 had been sent to Crickett’s Answer for Cancer by over 20 people, and 36 new breast cancer survivors were helped in the first 40 days.  

On Friday, the project was recognized by Bloganthropy, with me named as January’s Blogger of the Month.  Thank you, Bloganthropy, but the award really belongs to all of the bloggers who helped saturate this part of the ‘net with notices that there is now help available for breast cancer survivors who need but can’t afford compression sleeves to control their lymphedema. 

Thank you, friends.  Every day, your actions remind me that there is indeed good in the world.  Here are the posts that were written in support of this effort, and tweeted ’round the world:

Ann Bibby:
BlogHer (Mel):
C. Mom:
Crunchy Chewy Mama:
Dr. Kathleen Ruddy:
Elizabeth: Florinda:
Garza Girl: and
Justice Stacey:
Marty: and
Mayberry Mom:
Michele: /cant-afford-lymphedema-sleeves/
ThisFullHouse @ Wellsphere:

This effort was recognized by writers at the American Cancer SocietyBloganthropy, BlogHer, Care2, Mom Blog Magazine, and ShePosts as being an exciting community effort.  Thank you all.  And if I missed your post or it hasn’t gone up yet?  Let me know.  I’d be thrilled to add even more!

That’s it. Enough with this cancer stuff.

February 17, 2011

I got sucked in.

and without realizing it, I got stuck in the identity of “cancer patient”. Not astrophysicist. Not change agent. Not super(busy) mom. Not friend, or equal partnered-spouse.

It was an accident. And it was a mistake.

It was a mistake that (along with sky-high blood pressure and racing heartbeat from my trial medication) landed me in the hospital two weeks ago, and that has caused me no end of terrible thoughts as I suffered as my body got used to new heavy-duty trial medication and what turned out to be a kidney infection (or infected kidney stone?) on top of that. I was in bed for almost a week this time, on top of similar trouble just two weeks ago, and it’s not a good place for my head to be. And when even doctors shake their heads sadly at your patient history, it just reinforces that, and I’ve seen a few lately.

I thought, I honestly thought, that I was dying.

But I’m not. Well, no more so than we all are, said my oncologist just now, and I needed to hear that. I needed to hear that a lot.

Yes, I have Stage IV cancer. Yes, again, the fourth cancer in less than four years. Yes, it sucks. Yes, my next PET scan is scheduled for April, and we may see bad things. But we may see GOOD things. There is real hope that this will work, and I have to cling to that in more than a pretty little poetic way.

But more than that, I need to forget about it sometimes too. I need to spend more mornings doing things like making homemade frosting with my kids, and volunteering at their school. I need to throw myself into the work I love, and remember why I love science. I need to be my husband’s dinner partner again, instead of the woman he has to bring things to because she’s too weak to get out of the damn bed.

And to do that, I need to leave this cancer identity here, at the hospital, today.

And I need your help. In my toddler planet email box are nearly 700 emails. Some are brimming with excitement, full of ideas for projects that people want me to help them with, to be the face of cancer patients, to advocate, to raise money, and I need to say no. Some are ideas that I started, like blogging my clinical trial experience for ACS or the lymphedema sleeve connection that I made and asked you to help me publicize, but that then got out of control. Some are people wanting to do things for me, to send me things, to take my picture, to tell me about Cleaning for a Reason that will clean my house, to help. To help. Some people just want to visit the sick, and we are told explicitly to do that in the Bible and in faith traditions, and it’s lovely and wonderful and generous and

I can’t take it.

I don’t know how to say no to kindness, but I need to learn.

Because I need to get out of bed, push myself a little more each day, and find those other parts of ME again, to make this life that I’m fighting so hard for really be worth it again.

I’m taking extraordinary measures to live.

It needs to be MY life again. Not that of a cancer patient, living with either a fear or an expectation of death.

To sum up (and I’m sorry to ramble), I asked my oncologist today to tell me, straight out, whether I was dying or not. She said not now, and that there are more chemotherapy drugs to try if the trial drugs don’t work. We need to try this. She wouldn’t do this if she felt it was time. And there is hope of getting better.

After all that, I had still had trouble understanding her words, given how I feel, so I asked her, in mom-terms: So, should I sign the kids up for swimming lessons or call hospice? She looked me straight in the eyes, put her hand on mine, and said

Swimming lessons. No question.

But first, friends, I have some work to do in that email box. I’ve had trouble finding the words, but I think I have them now: “No, thank you.”

If you get that email this week? I love you. I love that you were so thoughtful. I love that you care about me. But I can’t act like a patient anymore, unless I want to keep being one. And I don’t. I want to take my kids to swimming lessons!

Edited to add: My labs just came back. Neutropenic. (My white blood cell count is too low.). No treatment this week. No crowds. Lots and lots of washing of hands for me and everyone around me. Did this cause the weakness that made me so afraid that my body was shutting down? I dunno, but it surely didn’t help.

I was in a bad place

February 9, 2011

I was in a really bad place this weekend — and I don’t even mean the E.R.  I was just so tired, so worn out from whatever it was that was making my heart race and my breathing funny, that I didn’t function very well at all. 

My feet were so tender from the medicine (the biological agent leaks out slightly, making them bright red and tender) that it hurt to stand on them, or to take a step.

So I didn’t.  I slept.  I rested (doctor’s orders!).  I hydrated.  It was really, really boring.

It put me in a bad place, a canyon of fear and dread with walls so high that I could not see out.  I knew that it would pass, of course, but it sure didn’t feel that way.  It felt dark.  The sticky spots from the monitor leads wouldn’t rub off.  The hospital discharge papers sat on my desk, reminding me to call and follow up with my oncologist.  The CT results, showing what they said was a new hot axillary lymph node, topped my pile of “to dos” on the bookshelf.  It couldn’t be a  new hot axillary lymph node, I knew that — I don’t even HAVE any axillary lymph nodes, since they were all removed last April.  But no one could tell me whether this is one they saw before, and my oncologist was on vacation.  I worried.  I cried.  I tried to work, but I didn’t get much done.  I needed to make some decisions – buy an airplane ticket?  Buy a therapy tub?  Build a sunroom?  and I felt stymied, stopped, stuck. 

I felt stuck.

Should I move forward as if I were going to be here for another year or five?  Or was any money spent on my behalf wasted?

Terrible thoughts.

I won’t tell you more; you don’t need to hear it.  I’m embarrassed to even admit that in the midst of all this caring and thoughtfulness, I allowed my trip to the E.R. to sadden me this way.  The physical weakness made me feel powerless, and I had a real setback.  I realized finally that I needed a little shove to get back on track.

Or, apparently,  lots of love.

I thought I needed a shove, but somehow the love and prayer (the novena continued, concluding last night) helped boost my spirits, a little at a time, and after a few days, I could see the light peeking out above me, above the canyon, and I clung to the rope I thought I was at the end of, and I pulled myself up, a bit at a time, and I let my friends pull me up too.

Like @Techsavvymama who brought flowers and gummy candies for my kids on Friday.  Like @Teachmama who came to sit with me on Monday — and brought bread and soup and fruit since both C. and I were under the weather.  Like Rebecca, who kept calling to check up on me when she heard that my scan showed another positive lymph node, and I was worried.  Like @canape, who reached out, even in the midst of her own pain, to tell me about her father.  Like Colleen and Marie and school friends, who continued the novena.  Like  @jessicaapiss who took my boys and me on a normal playdate to the nature center, because I needed to feel normal again.  Like @stimey who offered to come sit with me, again, and all the friends who twittered with me or left me comments here.  Like all the wonderful friends who sent notes to be put in a very special little box that @itsmylife sent to cheer me up.  I’ll write more about that box when I’m a little better, but please know that it’s here, and it is so beautiful, inside and out….

And yesterday, I left the house and went to Target, and among all the Valentines and decorated cups and plates for the preschool party, I bought swimsuits. 


I intend to be here this summer to wear them. 

Oh!  One funny thing about my trip to the E.R.  The umpteenth time through my medical history, I told the doc that I was in a clinical trial for Nexavar and Femara.  He stopped me, mid-recitiation, surprised, and said, “I didn’t know they were giving breast cancer patients Nexavar.”  I looked at him straight on and replied, “They’re not.  I’m in a clinical trial.”

That’s how cutting edge this research is.  The docs are intrigued, because Nexavar works for their lung cancer and liver cancer patients, but they know it doesn’t work for breast cancer patients by itself.  There is hope that it will work in combination with Femara, which starves the breast cancer of estrogen … but there is no certainty. 

But there is hope.  And that, in a nutshell, is what being in a clinical trial is all about. 


The Novena

January 31, 2011

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 No Princess Alone buttonhope 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.