Bone mets … and another trial

April 14, 2011

Two things. 

1.  The cancer has spread to my bones.  This is called bone metastasis, and it’s not a particularly good sign.

2.  The cancer in the lymph nodes in my chest now shows “near-complete resolution” with “minimal hypermetabolic activity.”  This is GREAT NEWS and as far as I’m concerned, it’s at least a minor miracle.  Not to use the word lightly around my friends the nuns or anything, but really?  Near complete resolution?  Awesome.

We just have to work on the cancer in my bones now, adding Zometa infusions once every four or twelve weeks to strengthen the bones and (hopefully) slow the cancer’s growth as the Femara continues to block the estrogen that feeds it.  I say once every four OR twelve weeks because we don’t know yet.  I’ve agreed to join another clinical trial and recieve whichever treatment the randomizer assigns me to receive. 

Experimental research is important.  Just because the last clinical trial was so hard on me doesn’t mean this one will be – and every little piece of knowledge helps the researchers plan treatment not only for me but for the women and men who come after me.  Bone mets happen to 70% of breast cancer patients, they say, and we need to find ways to control their growth until they can be stopped.  So I’m off to start another clinical trial, with my first infusion tomorrow.  I’m hopeful.


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.


Things are looking up!

March 3, 2011

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.


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:

Aimee: http://smilingmama.blogspot.com/2011/01/surviving-in-style-free-lymphedema.html
Amie: http://www.mammaloves.com/2011/01/wanna-join-an-army/
Amy:  http://teachmama.com/2011/01/new-for-us-friday-help-for-cancer-patients.html
Ann Bibby: http://www.care2.com/causes/health-policy/blog/-blogger-reaches-out-to-breast-cancer-patients/
Becky:  http://www.morebirthdays.com/blog/featured/the-power-of-one-helping-fellow-survivors/
BlogHer (Mel): http://www.blogher.com/start-out-your-new-year-helping-great-project?wrap=blogher-topics/conditions-ailments&crumb=32399
C. Mom:  http://www.lacaramamma.com/2011/01/06/can%E2%80%99t-afford-lymphedema-sleeves/
Crunchy Chewy Mama: http://crunchychewymama.com/index.php/when-a-friend-gets-cancer/
Dr. Kathleen Ruddy: http://breastcancerbydrruddy.com/2011/01/25/recycling-information-help-for-lymphedema/
Elaine:  http://connorandhelen.blogspot.com/2011_02_01_archive.html
Elizabeth: http://halfchangedworld.com/2011/01/for-whymommy/ Florinda: http://www.3rsblog.com/2011/01/for-whymommy-help-for-cancer-survivors.html
Garza Girl: http://www.garzagirls.com/2011/01/24/f-off-cancer/ and http://www.garzagirls.com/tag/whymommy/
Ilinap: http://www.dirtandnoise.com/2011/01/breast-friends-and-a-39-mile-walk-in-the-park.html
J.J. http://caffeineandaprayer.com/2011/01/09/lymphedema-sleeves-real-help-for-breast-cancer-survivors/
Jane:  http://jane.whiteoaks.com/2011/01/08/lymphedema-sleeves-demystified/
Jessica:  http://aparentinsilverspring.com/2011/01/a-parent-in-silver-spring-on-cnn-how-the-story-changed-how-im-changing-it-again-for-cricketts-answer.html
Joanne:  http://www.punditmom.com/2011/01/princesses-fighting-cancer
Jodifur:  http://jodifur.com/2011/01/cant-afford-lymphedema-sleeves.html
Justice Stacey:  http://mamalaw.com/2011/01/cant-afford-lymphedema-sleeves/
Khara: http://babymammachronicles.blogspot.com/2011/01/help-for-breast-cancer-patients.html
Kim: http://www.sheposts.com/node/859
Kristen: http://www.motherhooduncensored.net/motherhood_uncensored/2011/01/whymommy.html
Lara: http://chickennuggetsofwisdom.com/2011/01/24/no-princess-fights-alone/
Leticia:  http://www.techsavvymama.com/2011/01/no-princess-fights-alone-join-army.html
Liz: http://www.thisfullhouse.com/reviews/2011/01/good-causes-cricketts-answer-to-cancer.html
Lynn:  http://organicmania.com/2011/01/07/helping-those-who-need-it-most/
Marty: http://canapesun.blogspot.com/2011/01/lymphedema-sleeves-for-every-survivor.html and http://canapesun.blogspot.com/2011/01/lets-all-be-copycats-raising-money-for.html
Mayberry Mom: http://mayberrymom.com/2011/02/04/on-not-fighting-alone/
Mel: http://www.stirrup-queens.com/2011/01/322nd-friday-blog-roundup/
Michele: http://scrapsofmygeeklife.com/everything-else /cant-afford-lymphedema-sleeves/
Michelle:  http://www.wifeandmommy.com/cant-afford-lymphedema-sleeves/
Minky:  http://dialmforminky.com/2011/01/need-help-affording-lymphedema-sleeves/
Mod*Mom: http://www.momblognetwork.com/%5Btermpath-raw%5D/lymph-edema-sleeve-giveaway-12000
Robin: http://noteverstill.blogspot.com/2011/01/rare-psa-lymphedema.html
Robin: http://wwwmylifeasitis.blogspot.com/2011/01/cant-afford-lymphedema-sleeves.html
Sam: http://www.momblognetwork.com/%5Btermpath-raw%5D/help-our-friends-support-crickett-s-answer
Stella: http://imstell.wordpress.com/2011/01/06/advocacy-and-lymphedema-sleeves/
Thien-Kim: http://www.imnotthenanny.com/2011/01/cant-afford-lymphedema-sleeves-new-help.html
ThisFullHouse @ Wellsphere: http://www.wellsphere.com/parenting-article/for-whymommy-give-cancer-the-virtual-bitchslap-it-deserves/1325109
UrbanMama:  http://spa.typepad.com/mamas/2011/01/index.html
Vera: http://breast4healing.amplify.com/2011/01/25/361/
Victoria: http://www.themummychronicles.com/2011/01/copy-cat-for-cancer.html
Wendy: http://wendyharpham.typepad.com/healthy_survivorship/2011/02/help-for-patients-with-lymphedema.html

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!


Neutropenia

February 22, 2011

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.


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.


Happy. Nice. Curious.

February 9, 2011

I worry about my kids.  I worry a LOT about my kids.  How are they making it through this crazy time?  How do they deal with hearing my name listed among the sick that we pray for at church every Sunday?  How do they feel when they hear me say, “No, honey, Mama can’t” wrestle or swordfight or take them for a walk? 

Are they ok?

Are they going to be ok when they’re teenagers, or all grown up?  Will this time be a defining moment for them, something to point to in future therapy sessions?  Will they be ok?

But yesterday, my oldest brought home a drawing from school that made my heart sing.  They drew pictures of snow globes, and, out of anything in the world, he chose to draw himself playing with two friends.  He drew friends.

He didn’t draw the dark scary place that I was in.  He drew the happy, kid place that he was in.

And he’s going to be ok.

Today, he came home with simple homework:  write three words that describe who you are.  We waited to hear what words he’d choose, and, after his bath tonight, he told us:

Happy.  Nice.  and then he asked his Dad what word he’d use to describe him, curious what he would say.  Dad said, “curious.”  Widget smiled, and there the words were, all out in the open.  WhyMommy’s oldest boy had fulfilled her deepest hopes, all at the age of 6.  He is happy.  He is nice to others and his friends.  And he does ask “Why, Mommy?” just like I dreamed, well before he could talk.  They’re still the sweetest words, next to the last ones I hear every night, as I turn off his light and kiss his forehead as he goes to sleep:

“I love you too, Mommy.”


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