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

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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.


Do bumps on head mean cancer metastasis?

December 14, 2011

No. Or at least, not always. Two Sundays ago, I googled that question, in endless combinations, and found no answer. I was alone, the others having gone to church, and I needed to know — were the squishy red bumps on my head a sign of brain mets, as my Grandmother’s had been so many years ago? Or were they irritation from bone mets spreading to my skull? What were these strange bumps, and how could I find an answer on a Sunday afternoon?

I ran my hands through my short hair, exasperated at the lack of information on the net and wracking my brain to recall other forums and bulletin boards. As I rested my hands on the desk, I turned them over, questioningly – and found the palms crossed with clumps of hair. I laughed, I cried, and my mother came in to comfort me. I told her what had happened – I was losing my hair! – and she put her arms around me in reassurance.

No, no, you misunderstand, Mom! I wasn’t crying for the loss of my hair. I was crying in relief – my fears had not come true – and I was not one step closer to the end. I was just losing my hair, a sign that the chemo was working, attacking the fastest-dividing cells, as it was supposed to do.

As I explained to my sons that night, this kind of chemo attacks the cells just as each divides into two new cells. The fastest dividing cells in a person’s body are cancer cells. The second fastest are the ones that make your hair grow. So when we see Mommy’s hair falling out, we know (hope) that the medicine is killing both the cancer and the hair cells as they divide!

The kids accepted this, and asked me what cells are next – stomach, I explained, which means my stomach may hurt over the next few weeks as well. We ended with great big hugs, and my 7 year old surreptitiously tugging on my hair in the back, just to check.

In fact, the next night, just before bed, he met me at the top of the stairs and yanked on it! I yelped, not remembering the previous day’s conversation, but just as quickly I remembered, lifted him up in a giant hug, and laughed and laughed with my smart boy, checking for himself that the chemo was working – reassuring himself, and me, that we would be okay.

It’s been a couple weeks now, and my hair has significantly thinned on top, but I still have hair around the edges and faith that the chemo will work. Today I’m back at chemo, scared to take it on top of pneumonia, but scared even more to skip another week. A silly fear? perhaps, but when my day comes I know that I will have done everything I can to fight this thing and win one more day over cancer.


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! 


Hospital

July 25, 2011

Admitted to hospital for better pain management. Nurses couldn’t get an IV in (chemotherapy shrinks the veins) and my blood pressure rises to 181/110 when I stand. So tomorrow morning, they will place a port in my upper chest so that IV access is just a stick away.

They’ve upped my pain meds to oxycontin + dilauded. Tomorrow I’ll have x-rays to see if anything’s broken and meet with my oncologist to decide on a plan for what to do about the spots of cancer they saw in the scan. I don’t know how many or how much – there’s time for that tomorrow.

Tonight I rest and thank God for the friends and family who watched my kids today and those who surprised me with a visit already. Tomorrow morning I have the surgery I’ve dreaded for four years (probably needlessly) and emerge with essentially a small pincushion hooked into my artery. This will make treatments easier. It will make hydration and blood draws easier. But tonight, it doesn’t feel very easy at all.

Please pray with me for healing.

Susan


Ready for Summer!

May 27, 2011

Susan May 2008, post-surgeryHere at the WhyMommy house, we are totes ready for summer!  We have our flip flops, our summer t’s, and our rashguards all out and ready for action — and this weekend we get our first taste of the lazy hazy days of summer.

What’s a rashguard?  I was asked that twice this week, so I want to show you.  You can see the general look in the picture at the left, one of a very few that we took after my double mastectomy, when I was nervous about going to the beach with the beautiful people.  I had lumps and bumps everywhere after surgery — except in the places you’d expect.  But I wasn’t ready to give up on the beach or the pool forever.  In fact, we were headed to the beach to relax and recuperate!  After some conversation on twitter and the blogs, we came up with this solution — and now, I’d recommend it for anyone who’s tired of feeling overexposed at the pool.

A rashguard is like a t-shirt made of swimsuit material.  You can get them fitted to your body for serious swimming or looser (unisex style) for additional coverage of post-baby tummy or post-mastectomy scars.  I *adore* the rashguard look and the ease of which the kids and I can get ready for the pool – there’s no struggles with vast quantities of sunblock on their pale tummies and backs anymore, or worries about missing a spot, because except for their limbs, neck, and face, they’re covered!  We can be ready in a flash — everybody throws on board shorts (the boys) or bikini bottom (ok, that’s me) and their rashguard t, and we’re off to the pool!

Ah, summer.

This post inspired by Curvy Girl Guide’s Project Real – National Swimsuit Confidence Week!  Real women all over the internet are donning swimsuits and showing the world that it’s ok not to be perfect or to look just like the models in the catalogs.  The project is popping up on blogs all over and has even been covered by Marie Claire!  I’m not part of the campaign — I’m just a fan!  Let’s get back in the pool! 


… 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.