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.


Changing the conversation

May 3, 2011

Deadline 2020After a weekend workshop with 800 energetic, amazing, committed women (including 8+ incredible bloggers and 30+ metastatic women fired up to fight for the END of breast cancer), I have new energy and new spirit and new FIGHT in me, both against this horrible disease in my own body and against its formation of tumors and spread in bodies (called metastasis) in general.  There are some exciting ventures afoot, and hundreds of fired-up women canvassing the Hill today, talking to their Senators, Representatives, and the Legislative Assistants (LAs) that make things happen on Capitol Hill. 

There is hope – but there is more than hope – there is now a DEADLINE and a plan for the END of breast cancer tumor formation and metastasis: January 1, 2020.  Ridiculous? Perhaps.  Daring? Definitely.  More details will be coming, interspersed here with my usual stories of motherhood and science and friendship, and I’ll be introducing you to some amazing women, my fellow #cancerrebel warriors who STAND UP and FIGHT BACK and will not be comforted by pretty colors or hope.  We need more than ribbons, my friends.  We need RESEARCH that will bring about BIG change, more than incremental changes and improvements in the drugs that poision us (but poision the cancer just a little bit faster).  I love my chemo, don’t get me wrong, but wouldn’t it be great if we could SUPPRESS the tumor cells into dormancy or make the surrounding tissue UNWELCOMING so that they would move on, and “leave the neighborhood” entirely?  There is promising research, and it is exciting.  I can tell you more about that in the coming weeks if you like, but today I want to echo four statements from the conference speakers (with citations), and I hope you can hear the urgency through your computer screen or smartphone:

1. More than 500,000 women still die of breast cancer each year.  “The five-year survival rate for women diagnosed with localized breast cancer is 88-93%; the five-year survival rate for women diagnosed with metastasized breast cancer is just 15%.”   Fran Visco, NBBC President (the NBBC Baseline Status Report states that the first statistic is 98%, citing Welch et al JAMA 283(22): 2975-2978).  We hear all the time about survival rates improving – but for those of us with metastasis, there is a long way to go.

2. “Over 30% of women initially diagnosed with earlier stages of breast cancer will develop metastasis” — and no one knows which ones. – Musa Mayer, survivor and advocate, citing O’Shaughenssy, Oncologist 10: 20-29, 2009.  If new research can prevent secondary metastasis, women with primary tumors can live longer and healthier.

3. “Age-adjusted cancer mortality has not changed significantly in the last 60 years: it has decreased just 5%, while heart disease decreased 65% in the time period 1950-2005,” – Sharon Begley, journalist.  We can do better.

4. “Only 5% of cancer research funds are spent on metastasis, yet it kills 90% of all cancer patients.” – Dr. Patricia Steeg, researcher, in Sleeman and Steeg, EurJCancer 46:1177, 2010; Science Daily 1 June 2010. 

Can we cure cancer? Gosh, I hope so.  Can we prevent tumors from forming and metastasis from spreading?  We must.

What can be done?  Steeg urges new “secondary metastasis prevention” clinical trials that could occur even if experimental therapies (successful in mice) did not shrink existing tumors (there are a number of studies that show no change in the primary tumor but BIG changes in metastases.  All cancers are not the same.).  Success would be defined as MORE TIME for patients with (for example) bone mets.  More time.  I want more time.  To find out more and to tell the NCI this work is important, please leave a comment at the NCI site (Steeg’s provocative question WS-90) too.  Thank you.

For more of the conversation, please follow these #cancerrebel bloggers and warriors: Elizabeth@ccchronicles, @pinkribbonblues, @kathikolb, @uneasypink@jodyms, @chemobabe@yscbuzz  – and learn more about #deadline2020.  If you’d like to hear more about the plan for Deadline 2020, new theories on metastasis, tidbits about cancer treatments 4000 years ago, what dormant tumor cells are, why Dr. Susan Love calls lifesaving surgery/radiation/chemo treatments slash/burn/poison, or how physicists are taking a new look at cancer cells, why, just ask and I’ll happily share with you what I learn.