How did we get here?

January 22, 2012

— A conversation with my husband, shortly after arriving home this afternoon with fresh oxygen tanks, spots on my liver, fluid pushing around my lungs (likely filled with cancer, as are the tumors inside) and at least one broken vertebra that must be healed before we resume any kind of treatment. —

How did we get here? I asked my love, across the bed strewn with children’s toys, books, and an oxygen tank.

We got here because of your amazing strength, commitment, and love for your family that you have shown since you were diagnosed – almost 5 years since diagnosis, 4.5 years since we were afraid it would end, 3 years after most IBC patients make it, all because of you. The medical details don’t matter. Our life has been a nonstop adventure.

Nonstop. I agree. And because of you, always at my side, supporting me, joking with me, taking me to yet another appointment and holding my hand. Kidding me about the speed I drink the contrast shakes, and raising eyebrows with me as the tech’s hands jiggle as he tries to place the line.

What, aren’t you going to blog anymore goodbyes?

I am not blogging goodbyes. I am not saying goodbye to you yet. I won’t.

You will have to soon. Hospice comes in an hour, and since I need Pallative radiation to fix the latest spine fracture, I can’t go to treatment anymore. We need hospice, at least for a time.

No matter what, you deserve to feel better right now, and you deserve a chance to enjoy family and friends, and if that means we use hospice, or go to the moon, or paint you green, then we will do those things. I have dibs on the paintbrush.

Green’s really not my color.

I have not yet encountered a color you could not make yours. Purple?

Purple. I’ll change clothes and listen to her when she comes, but I can’t promise that I’ll be sparkly to the hospice lady.

I’m willing to bet the hospice lady is not expecting to be greeted with confetti and song.

Good point. More tomorrow, my friends. I hope.


A little trouble

January 17, 2012

I’ve been having shortness of breath for several weeks, which we chalked up to the pneumonia, but it’s just gotten worse. Yesterday I had trouble just walking from one room to the next. Today, just sitting on the couch with a friend. In fact, I’m still having trouble, even though I’ve been hooked up to the oxygen all day.

We’re going to the ER now, to get scans, at the direction of my oncologist. Please pray for us tonight.

Love to you all and all whom you love,
Susan


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.


Inflammatory Breast Cancer: Genetic Origins?

September 9, 2011

For years, now, I’ve beaten myself up over how and why I got inflammatory breast cancer (IBC).  Was it that I drank too many diet cokes while studying for college exams?  Was it that I worked in a physics department and there was more than one mercury spill in the lab, unbeknownst to me?  Was it the water we swam in off the Maryland coast when I was so very pregnant, where we saw the industrial plant nearby as we were leaving?  Did I eat too many cheese-its and other processed food?  Why, God, why?

Ahem.

I may have overreacted, back when I was first diagnosed and new to the topic, and of course at each recurrence — it’s only natural.

But we do know a few things about the origins of cancer.  In addition to a person’s actions and direct exposures (like Chernobyl and other disasters), some cancers have environmental origins, which an individual can do little about.  Some cancers are exacerbated by lifestyle factors, like smoking, overeating, and lack of exercise.  We know that now, and we know that we all can reduce our risk of cancer by eating fresh foods, by exercising, and by keeping our weight at a reasonable figure.  There is one more promising source, though, that we haven’t yet been able to do much about yet, and that’s genetics.  Some people have a gene that causes cells to mutate and grow more quickly than typical cells, and some of those people will develop precancers and full-blown cancers (and that sucks!).

The IBC Research Foundation announced today that they have raised $50,000 and given a research grant to Dr. Heather Cunliffe, Ph.D., to determine the genetic origins of triple-negative IBC.  My hands are shaking as I type this.  This is what we’ve wanted and needed – this is REAL hope.  Not pink-ribbon hope, but REAL hope to find a cause, and then a cure, for inflammatory breast cancer, which still kills half of the people it plagues within 5 years.

This is what I’ve been waiting for.  And all it took was $50,000 in donations.

One of which was mine.

I’m adding Dr. Cunliffe to my prayers this week.  I pray that she stay strong, and dedicated, and that she have the right tools and support to FIND the GENE that causes my cancer, and that that knowledge then can be USED by her or others to find out how to turn it off.

So that others don’t have to suffer.

I’m over the moon about this news, and I wanted to share this with you — even at the risk of trolls appearing in my comments telling me that I did, actually, cause my cancer by snacking on diet coke and cheese-its.  This news isn’t about me.  It’s about reducing risk for those who come after me, and it is WONDERFUL news!

TGen Receives $50,000 to Find Genetic Origins of Rare Breast Cancer

PHOENIX, Ariz. – Sept. 7, 2011 – The Inflammatory Breast Cancer Research Foundation (IBCRF) has awarded $50,000 to the Translational Genomics Research Institute (TGen) to discover the genetic origins of this rare and most deadly form of breast cancer.

Unlike other types of breast cancer, Inflammatory Breast Cancer (IBC) is very often misdiagnosed, and rapidly progresses to an advanced stage, said Dr. Heather Cunliffe, Head of TGen’s Breast & Ovarian Cancer Research Unit. “No one knows what causes IBC and what drives the aggressive nature of this disease,” Dr. Cunliffe said. “You can wake up one morning and out of the blue your breast will be twice its normal size, red and inflamed with full blown Inflammatory Breast Cancer.”

To read the rest of the press release go to:
http://www.tgen.org/news/index.cfm?newsid=1991

Congratulations, Dr. Cunliffe, and THANK YOU, IBC Research Foundation!

To donate, visit the IBC Research Foundation‘s website; if you wish, you can mark your check “for research.”  I did, and I’m so excited to see how my donation and others are being used! 


… better than I deserve.

May 26, 2011

Susan, happy with friendsYou know those folks who when you say “hey, how are you?” in greeting, answer “better than I deserve!” and you never quite know what to say?  Yeah, me either.  But today, that’s all I can say about the week.

Laughter and margaritas (happy, Kristen?) in the country on Saturday, work on Sunday, finished chapter on Monday, dinner with book club/moms club moms on Tuesday, tea and chocolate date with Jessica and Jean and Kristen and KATE FROM NEW ZEALAND on Wednesday, t-ball for Widget, Mom’s full attention for Little Bear, and today there’s chapter research and lunch duty for Widget and party for Bear and then the summer starts to begin in earnest.

And we’re good.  We’re so, so good.  The kids are delicious, and I’m back to “parenting” instead of just “managing” to hang on in the madness of the end of the school year.  Finally.  We don’t always do amazing things in the afterschool hour, no, but we do some days, and the other days we just play near each other while mommy works or gets down on the floor and plays with the boys.  Because I can right now.  I’m in a good period, and even preschool pickup doesn’t tire me out completely.  I can do it AND play when they get home, if I don’t exert myself with the chores in the morning.  So we’re in a routine now.  Write in the morning, lunch with Bear, write in the early afternoon, pick up and play with kids, easy dinner, put kids down, and then work again before a dip in the pool.  What an amazing life.

And spending so much of it with friends lately?  So wonderful.  I am so lucky.  You know, this is never the life I would have asked for — but it has so many good parts, and laughing with friends and playing with children and quiet time with my husband make the rough parts easier and the easy parts full of joy.  And there is so very much joy.  Jessica’s baby Alice, for example.  I held her again yesterday, and she makes my heart sing with promise for the future.  She is so loved, by her parents, by her siblings, by her bloggy mama aunties — and goodness will follow her.  I can tell.

As Kristen likes to tease me, suunshine and rainbows follow me everywhere.  When I hold baby Alice, they multiply.  She is such a blessing to her family and friends!

In other news, the pool is finished (oh, floating in it is heaven — my hip slips back into place, my aches are soothed, and just for a little while I can forget my limitations), the sunroom surrounding it is being shingled (when the guys show up, they do great work!), and yesterday I bought new plants at Johnson’s Nursery.  PERENNIALS. 

Think about that one for a moment!

The picture on this post is from yesterday’s tea and chocolate date.  I love the full picture so much but we all have different levels of privacy for this blogging thing and just like I don’t post pictures of my kids (which makes posts like this week’s happiness look way too self-centered — sorry about that!), not everyone likes their picture on the web.  So I keep pictures of book club, anonymous and pseudonymous bloggers off the internet, but I do keep them in my heart.  Maybe you can tell from the cropped picture above how happy I am to be with friends.  Trust me when I say their smiles are big and bright too.

So how am I doing?  Better than I deserve. 

And I’m so, so grateful.

If you have a moment to pray or cheer another cancer warrior on, could you please lift up my friend Jenny?  She is battling her tumor Gertrude again, and the Xeloda is hurting her, like it hurt me last Fall (luckily for her it appears to be working!)  She blogs at Get Out Gertrude and twitters as @jaydub26.  Thank you.


Wishes

April 26, 2011

Dandelion, taken by Louise DockerAs we set off on our early morning walk, Little Bear scooting along on his tricycle and 6 year old Widget on his bike, the sky was blue and clear, the weekend’s rainclouds just a memory.

Four year old Little Bear stopped and plucked a dandelion in full feather, saying, “I wish for a dog!” “Me too,” cried his brother. Me three, I said, and we blew the fluff right off that dandelion so enthusiastically that a seed or two landed in Little Bear’s open mouth. Sputtering, he recovered his dignity and we continued up the hill.

At the top, Widget picked a second dandelion, asking me first what I wished for, if I could have anything in the world. As we had had a little talk about cancer that morning, preparing him for an upcoming class for kids of parents with cancer, I was honest with him, kneeling down and telling him my wish for many more years together.  “Me too!” said Widget, and he asked “What do you wish for, Bear?” “A dog!” said Bear, oblivious to the topic at hand, focused entirely on the Chow we’d passed earlier.

We blew that dandelion out fiercely, taking care to avoid Bear’s face this time, but one must have floated back our direction, because as I heard Widget explain what had just happened to Bear, I had to wipe something from my eye.  Such little bits of children they are, to deal with such big topics, but so strong.

My sadness disappeared quickly as I heard Widget explain, “We wished for many more years together, Bear. Maybe even a whole lifetime!”

The sun was shining as he pedaled away, and the birds sang happily above.


28 hours

March 30, 2011

Hiking in the woods with Widget, following paths where they lead; never once stopping to catch my breath

Taking Little Bear out for a bike (trike) ride as dusk begins to fall and the streetlights turn on

Writing late into the night, comparing policies, reading papers, churning letters into words

Smiling at my husband as we turn off our computers for the night; jobs well done

Inspiring young minds at preschool, them clutching planetary telescopes with chubby fingers

Two hours of skee ball and air hockey at the children’s arcade

Lunch out and Target, laden with summer shovels, buckets, cars, and noodles for the pool

Squirt guns sans water aiming and firing like high pitched blasters, because my kids don’t know guns

Shovels pressing into dirt that doesn’t yet know it should be springtime

Bikes and trikes; soccer balls and peals of laughter filling the air as the daddies and mommies next door come home from work

Playtime with neighbors and petting the poodle who lives down the block

Cuddles and laughter and cheese and cracker snack that I cut myself, with fingers that no longer peel

Cartoons and Daddy and snuggled and time for bath, my little ones

and how different these days are becoming from February, when I often could only write

bed.

Today, there is hope and love and little boy giggles. Thankfulness and praise. and confidence that I can have a good day again tomorrow.