children with cancer (by Judy)

April 16, 2011

(First, I need to say that I’m not talking about Energy Boy; I don’t want to upset any of our loved ones.)
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When it is dark enough, you can see the stars.
~ Ralph Waldo Emerson

It’s hard being a mom with cancer, particularly an aggressive cancer or a cancer at an advanced stage. We worry about our children — how is this experience affecting them? Will it change them? Will they never be quite as innocent as other kids who don’t face such troubles in their families?

And then there are the really big worries: Will I be here to raise him? Will he ever remember me when I wasn’t sick? Will he get as much mommy time as he needs before this disease takes me?

It’s a heavy burden, but I know there are heavier ones. My cancer is the worst thing that’s happened to me, but I know without a doubt that if EB had cancer, that would be even worse. We don’t want our children to feel pain. I wouldn’t want him to have to go through chemo or radiation or surgery, as I have. Yet, some children DO go through some/all of those, and perhaps even more painful stuff. We’re blessed that EB is very healthy right now and I pray that he stays that way. I don’t know what it’s like to be a mother whose child has cancer, but I can imagine somewhat.

Yesterday I received a very nice email from Ryan Stephens, the Marketing Coordinator of the MD Anderson Proton Therapy Center. I’m going to quote some of his email here.

Hi Judy,

Because of the way you’re able to bring Energy Boy and Absent Minded Professor to life on your blog, while also detailing your own cancer journey, I thought you would be a great advocate in helping us share the story of Matthew Rager – a 9-year old glioma brain tumor survivor – in hopes that other parents will feel empowered in the fight against childhood cancer.

I work at the MD Anderson Proton Therapy Center where Matthew received his proton radiation treatment and his mother Denise wanted to share their story, of struggle, advocacy and courage to offer support and hope to other families facing cancer. Their story, told by Denise through a video essay will premiere April 16th in New Orleans at the annual Mom 2.0 Summit (on Twitter @Mom2Summit or #Mom2Summit). The video will be available on YouTube for everyone to view and share immediately after the premiere. I’ve included you in an exclusive group of people who get to see the video a day early in case you want to share it on your blog after the premiere tomorrow.

I hope you’ll consider sharing their story and video on your blog (or via Twitter) after the premiere — as you will no doubt influence the lives of those who now or might some day need to make a decision for themselves or someone they love.

Please let me know if you have any questions or would like more information on proton therapy. In the meantime, more information can be found here: http://mdanderson.org/protonforkids

Thank you for your time!

Ryan Stephens

I watched the video, twice, and cried like a baby both times. I related to the mom, for even if my son hasn’t been through what hers has, I think on some level, many of us moms have secret worries and fears about “what if . . . . ” happens to my child. I wanted to embrace this boy, this family, and then cheer them for what they had been through, what they had endured.

I love this video. It’s a very touching story of a boy’s journey through cancer. And not just his journey, but his family’s journey, and what they’ve done to help others afterward. Mostly, it’s a video about hope, and hope is nothing to sneeze at, my friends.

Please watch Matthew’s story. It will make you want to hold your child(ren) a bit tighter today.

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Cross-posted to Just Enjoy Him.

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Neutropenia and motherhood

February 23, 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.

Originally posted at Toddler Planet, February 22, 2011


The kids

February 23, 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.”

Originally posted at Toddler Planet, February 9, 2011


Saying a novena

February 23, 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.

Originally posted at Toddler Planet, January 31, 2011


Finding the new normal

February 23, 2011

If I were to detail yesterday’s events for you, as I try to when they are relevant to this cancer experience, I would simply break down and cry again, and that would be useful to almost no one.  Let me just say that I met with a lawyer, drew up the outline and contents of my will, asked him to stop joking and saying “if you die tomorrow,” named guardians for my children, considered who to give the power of attorney over my medical and financial affairs, and who could make the decision to withdraw life support, sipped a cup of hot and steamy tea that shook in my hand a little as I played the grown-up to a seasoned professional, and then spent the afternoon cuddled up in the big bed with my littlest one and PBS Kids, calming down and gathering my senses about me again until it was time for my oldest to come home from school.  (He stood in the sunlight streaming in the window by my bed, and I cannot believe it, but when I looked at his feet, I saw that he was standing in rainbows, broken by the glass.)

After a wonderful and distracting evening event at school, I developed a splitting headache, sensitivity to light, nausea, and dizziness from it all and had to lie down alone in a dark room, listening to my husband read the bedtime stories and wishing it were me.  I worried that these were the dreaded side effects and that I couldn’t continue in the trial — and of course that made it worse. 

But there were two redeeming moments to the day that I must take a moment to share with you.  The first was as I was getting Little Bear all snuggled up with me in the big bed, blankets pulled up around us and a freshly popped bowl of popcorn at our sides.  Sherlock Holmes was on the screen, and my baby sighed and said, “Us really lucky, Mommy.”  Well, yes, baby, we are.

And this afternoon, my oldest was in my office (when he shouldn’t have been), and he asked me about the lego figure I keep at my computer, the Princess-Who-Can-Defend-Herself, complete with eyeglasses and sword, and he smiled with recognition as he responded, “I know!  She’s you!  She’s inside you, fighting the cancer!”

And so she is.

And so I will simply say that the rest of the day was a day horriblis and leave it at that, and leave you with the image of a very tiny and very strong lego girl inside me, fighting the cancer with her minature sword, side-by-side with the new medicines that at once starve the cancer cells of estrogen and deprive them of their ability to grow and divide.  She is fighting, and I will fight, and my little ones will not crumble, but cheer me on in this new trial.  No, we will never be back to normal.  But we are finding our way to the path of the new normal, and we will do it together.

Originally posted at Toddler Planet, January 22, 2011


A shift in perspective

February 23, 2011

This morning was pretty much awful. 

I held it together while I walked into the chemo ward, confident (enough), calm (enough), and ready for my blood draw — until I was seated in a very small room with three chemo chairs nearly side-by-side.  What’s a chemo chair?  Well, these are large overstuffed innocuous looking hospital chairs – unless you’ve been in one before, and then it’s also overstuffed with emotions, which typically aren’t that comfortable to sit on.  The man in the closest chair looked just awful – cap down low over his face, shoulders hunched, half-dozing as he waited for bloodwork to come back and the drip to be placed on the IV stand that sat arrogantly between him and the other patient.  I wondered what trial he was on, and hoped fervently that he actually wasn’t as bad off as he looked.  As I glanced at the woman in the other chair, I was somewhat reassured, as she was smiling and responding to email on her blackberry.  She looked like Sarah, actually, and I found a bit of a smile for her later.  “Sorry.  I’m a little nervous,” I explained.  “First day back.” 

First day back indeed.

The blood draw was delayed while they sent for smelling salts (I have this horribly embarrasing tendency to pass out if they wiggle the needle around in my vein, trying to get a better stick – after chemotherapy, one’s veins tend to be smaller and more stubborn.  Last Fall, one fainting episode ended with yells of “40! 40! Get the crash cart!” and big sticky pads placed on my chest for the defibrillator.  That’s when we found out I had vasovagal response, and that it was better to warn nurses and techs ahead of time, and to have smelling salts handy).  We waited, patiently and silently, in the small little room with the fuzzy tv mounted to the ceiling that showed us the weather, over and over.  The four day forecast, fourteen times at least.

After a while, they took my blood and sent it away for analysis.  If my labs came back “good,” then we would start the trial. 

We waited.  We made appointments, returned phone calls, and basically tried to wait together and not separately.  The man in the chair next to us woke up, mumbled incoherently, and when we looked over again, he was perfectly in control of himself — as he should have been, as it turns out that he was the other woman’s support person — her husband — and not there for treatment at all.  My impression of him as a cancer patient in later stages than me?  Totally off.  He’s fine.  He moved to a smaller chair as another woman walked in and took her place loudly, swearing about the 17 page consent form for this next stage of her trial, and we all waited patiently, trying to mind our own business.

After a time, we were taken to another room and told again to wait.

There was a lot of this, and I’m sure you don’t need it in excrutiating detail.  I asked questions, got answers, got a copy of my labs (everything’s fine), reviewed the list of potential side effects again, and finally got my meds.  I start the pills tomorrow.  There are two drugs.  One of them is an aromatase inhibitor (AI), which starves the cancer cells of the estrogen that they need to thrive.  The other is sorafenib (Nexovar), which “interferes with the ability of cancer cells to grow and divide.  The drug blocks two different pathways that would normally help cancer cells to multiply; one way is by limiting the blood supply and nutrients to the cancer cells and the second way is to stop the signal that allows cancer cells to grow in number.  Breast cancer cells are especially dependent on these two pathways to grow and we may be able to slow down or stop them with sorafenib….” (from the description of the clinical trial).  The clinical nurse had good things to say about the trial, since related drugs have been shown to work well together, even though sorafenib has not shown to be effective on its own (for locally advanced or metastatic breast cancer).  She was hopeful that this would slow down or stop my cancer growth.  She reminded me that the amount of medication given could be reduced or my participation stopped if there was too much of an effect — 20% growth in the cancer, or significant adverse impact on my quality of life.

Quality of life?

Did I miss the memo?

Apparently I did, as through my tears in the minivan afterwards I could hear my husband saying gently, “This is good news.  This trial is good hope that we can keep you alive and in good shape for longer.”  His words echoed in my ears, rolling around my brain and mixing with the words of the clinical nurse earlier.

Quality of life?

Keep me alive?

I thought we were still going for a cure.  Silly me.  I missed the memo.  I was still holding to the words of my oncologist in 2007, in 2008, and in early 2010, when she said to me earnestly, “We are doing this to get rid of the cancer.  I am hopeful for a cure.”  And yet, I totally missed the fact that she didn’t say that to me this time.  I’m locally metastatic — again — and this is totally serious.  The new meds may (hopefully WILL) slow my cancer growth or even stop it, but nowhere in the study materials or in their expectations will it actually get rid of the seven tumors in my lymph nodes in the soft tissue cradling my lungs.

The hope is that the meds will slow the cancer’s growth, and allow me to keep this quality of life.

This life, which requires frequent naps. Lymphedema sleeves. Lumpy body in all the wrong places.  And then some.  There is no “recovery” expected here, necessarily.  Things will not just be “fine.”  And I’ll have to come up with new words soon, words to reassure strangers who pry and wait for me to reassure them.  I can no longer say, “Well, I *had* cancer,” or follow up with ”but I’m fine.” 

I’m not.  I *have* cancer.  I’m never going to be perfectly fine again.  There’s a (small?) possiblity I may be cancer-free again, and I HOPE AND PRAY I WILL BE, but I have to learn to be fine with what is now, and to swallow my fears, and to appreciate the life I have.

This life.  This day

There is no more “Just wait until treatment is over!” or “In the Spring, we’ll be able to ….” because this is it.  This is the quality of life that we’re trying to preserve. 

Last Sunday, I told my priest after mass that the cancer had come back, and that I would have to miss RCIA this week.  I told him that I was hoping and praying to be accepted into a clinical trial, and I reassured him that I was confident that it would help.  He asked me how long I would have to be on treatment, and I clarified that it wasn’t that kind of a treatment — that I would be on it, if it worked, for the rest of my life.  He reacted visibly, saying, “For the rest of your life?  Really?”

And I almost laughed inside, suddenly realizing why he was shocked.  For him, the rest of one’s life is a long, long time.  For me — well, let’s say I just wish it were.

Sorry about ending this in a sad place.  I’ll work on the change in perspective and be back to my normally grateful self tomorrow.  For now, shake it off – go read about our area’s ice storm at the always hilarious Stimeyland, or read about some inspiring women at Women in Planetary Science if you’re not clicking away already to the next blog in your reader.  Thanks for stopping by.

Originally posted on Toddler Planet, January 20, 2011


The People

February 23, 2011

… and then, on the morning of his fourth birthday, before any of the presents, the cake, the party, and the friends, my littlest looked up at me in a quiet moment, gave me a snuggly hug, and said, “Me happy.”

And suddenly, all of it — the chemo, the pain, the lonliness, the aches, the despair, the struggling, the treatment, the side effects, all of it – was worth it.  Because my children, my very dear and sweet and kind but most of all MY children, the only ones I’m really responsible for when it comes right down to it, are happy.

They aren’t scarred.  They aren’t afraid.  When we spent some time playing in the hotel pool on Friday after my work concluded, they laughed and giggled and bounced up and down in the water in my arms or with the kickboard as we learned to swim (having missed those lessons I looked forward to taking them to so long ago, when I was first ill), and they we had so much fun together.  When they saw the kinesio tape holding my shoulder in place, they simply asked, 6 yo Widget asked, “Mama, is that tape from chemotherapy?” and I swooped him into my arms and said, “Nope, that tape is just to help my bones feel better.  It doesn’t hurt.  And Mama’s on a break from chemotherapy. Do you know why?”  He said, very earnestly, “Because you’re working this week?” And I was so glad he asked it out loud, because I could say again, “Nope, because Mama’s got a new medicine to take that will work even better and not make me so tired this Spring.”  And he said, “Good,” and we paddled to the other end of the pool.

We try not to talk about it so much, to not make their childhood soundtrack hushed whispers and talk of chemo, but we do talk about it matter-of-factly, like others would talk about things that are normal and everyday in their lives, and I think that’s how the kids are responding.  That it’s normal. And everyday.  And not to be feared, but to be dealt with. 

That’s our approach to resiliancy, and I hope it works.  It seems to be.

We just got back from church, where I hope and pray my kids will find solace and not anger when the day eventually comes that they’ll be there alone.  I want them so badly to understand how much the body of believers strengthens me, and how beautiful I find faith.  How much I love singing the old hymns, next to people I don’t even know sometimes, but who unite with me in our belief that there is a God, and that he hears us, and that he gives us peace.

Widget and I were admiring the stained glass windows quietly at one point (let’s pretend it was before Mass), and we agreed that they are beautiful.  Then I asked him in a whisper, “What is the most beautiful thing in this church?”  I heard an answer I did not expect from a six year old boy, but had planned to teach him as he grows.  He said, unprompted, taking his hand from his hair where he’d been twisting it, “The people.”

As it turns out, he already knows.  He knows that there is good in the world, and that beauty is found in the community of people who gather to praise, to lift up, and to help each other.  Whether that community is the stay-at-home Moms Club that we poured our hearts and lives into when the boys were babies, the Jewish community that we gathered together with for nursery school, the Catholic community that we have now joined and put our energies toward, the blogging community that you know I love and treasure and my family knows helps me as only words can say, the Blogalicious community that moved me almost to tears Friday night as we screened the new Blogalicious movie and cheered women speaking on screen or afterwards, our neighborhoods … community is community, whereever you find it, and, at the end of the day, the most beautiful thing is always the people.

Thank you for being my people, and for supporting me and each other as we go through difficult — and joyous – times.

Originally posted on Toddler Planet, January 16, 2011