I’m happy to share that our moments of joy seem to increase each day.   I am feeling more and more like myself and regaining the confidence I had several weeks ago that I can live with this disease.   I fell pretty hard after we learned about my early progression and it’s been hard to let myself be hopeful.  In a way if I just don’t want to get my “hopes up” because it would be easier to be pleasantly surprised at my next scan if things are stable instead of dramatically crushed when they are not.   But, I am a hopeful person and I simply have to be hopeful.  I can’t dwell in the despair and sadness because it feels like I am living in someone else’s body.

I am feeling good and trying to engage with life more and more each day.  I went for a run this week and a bike ride with Will.  I enjoyed dinner with my bookgroup and have been back in the Hope Scarves office.  I have been doing yoga regularly and feeling stronger each day.  Tomorrow I start working with a personal trainer to build back some of the strength I lost over the past 5 months and help strengthen my bones.   Hope Scarves has been getting lots of press thanks to a PR campaign we launched with the help of Power Creative.  We’ve had a couple tv spots and one more will run next week along with an article in the Courier Journal.   This week our scarf requests are pushing 30 so people are responding!  It has been hard to share my story with this new chapter.  I had it down 6 months ago- I loved sharing my story of survival and was so proud to be a breast cancer survivor… now my reality is just so sad.  Every one of the news reporters who have interviewed me have cried.   I so wish I could change this chapter, but I can’t.  I just have to fill it with as much good, juicy living as possible.  I’ve tried to articulate to the media that I don’t want my story to be sad.  I want it to be uplifting… hopefully this will come across in the press we get over the next couple weeks.

On Sunday we celebrated our oldest son, Will’s, 9th birthday.  What an amazing boy he has become.  I just look at him (almost eye to eye) in amazement and think how much this little boy changed my life and how much I love him.  I always pull out old photos on birthdays and reminisce.  As I was looking at photos from just last year’s birthday I was thinking how I never would have guessed what would happen in the next year.  I look at the simple, carefree happiness in the eyes of our family had and I can feel the joy we shared then.   It is so staggering to me to think how life changes in an instant.  It happens all the time.  A normal morning turns tragic, a catastrophic accident or a diagnosis and your world is never the same.  It is so fragile – life, joy, peace.   So, you have to hold on to it. You hold it tight and you ground yourself on love.  None of us know what is around the corner.  But, we do know the truth of the moment we are living. So live it honestly & wholly and don’t take it for granted.

I think about the hope I had a couple weeks ago, certain that my scan would show that the cancer was gone (or drastically reduced).  I lived those days leading up to the scan with hope and confidence.  In the end, it wasn’t the case.  But, would I want to have lived those days any differently?  Nope.  I’m glad I was happy and hopeful. I hope I can continue to feel this way regardless of what information lies ahead, what unknowns will unfold for our family… what “instants” will change our lives again.

Life changes in an instant… but how you react to it is an ongoing adventure.  It’s hard to live as a stage IV breast cancer survivor.  I can’t articulate how damn hard it is.  The unknown, the fear, the isolation, the confusion and panic.  But, it’s my reality and I am living it. I am living life over cancer… One instant at a time.

with hope,
Lara

When I reflect on my true “skills” in life I would rank sleeping at the very top.  My whole life I have been a great sleeper.  I put my head on the pillow, fall fast asleep and don’t stir until I wake in the morning.  I never understood the restlessness people with sleep problems would share.

Now, I get it.  I haven’t had a complete nights sleep in months.  Over the past several weeks it has gotten progressively worse with 3am wakings that lead to all out panic attacks.  Luckily Jay is by my side through it all and I get through the night just as I do each day… moment by moment.  Breathing deeply and finding comfort in the arms of others… sometimes a little xanax helps too.

My middle of the night “episodes” seem to be getting under control and I don’t wake in panic anymore. Now I just wake up and think and stare at the ceiling and feel for different aches or pains I fear are cancer… and write.  I write to my kids, friends, family.  I write about good memories and happy adventures and eventually I fall back asleep wrapped in the happy memories of my life.    Unfortunately my writing usually wakes up jay just as much as my panic attacks, but he’s a good sport.

Tomorrow I will have a bone scan.  Another test to look at my bones and disease in a different way to help the doctors have a clearer picture of what is going on.  So if our track record holds up I am prepared for them to tell me they have found even more cancer.  At least I am going into it prepared for the worst and maybe, just maybe we will hear some “good news.” But, I’m not going in planning on the good news like I so confidently did last time. That fall was just too hard.   After we have this additional information we will make a decision about treatment.  I met with two oncologists this week and both agree that if the bone scan doesn’t show any additional progress we will hold steady on the current drug I am on to make sure it has had enough time to “work.”  We will rescan in 8 weeks and see then if there truly is progression or if this drug holds me steady.  If the bone scan shows additional growth right now then I believe we will look at a more aggressive change in treatment.   But, we haven’t talked specifics, because I haven’t wanted to know yet.

So, I continue to live for the moment.  I found myself laughing and enjoying a beautiful evening last night with friends.  My friend Dj’s parents had us over for an impromptu dinner and through the conversations of kids, family, summertime plans, etc… I just let go of cancer and enjoyed the evening.  It was nice.  Despite our continued bad news I am determined to keep trying to live our life – to just be happy in the moment.  Not because I am denying cancer but because at that moment cancer didn’t matter.  I was not in pain, needing to make a major medical decision, etc… I could just live.

A dear friend and fellow stage iv breast dance survivor, Mary Ann, recently shared this question. If you had 5 minutes to live would you spend one moment being sad?  I know I wouldn’t. I would ring out every moment of happiness that I could from those 5 minutes!   That is how I am trying to live my life.  It isn’t easy – I cry every day.  I throw things and I lay on the couch exhausted after several hours of playing with the kids.  I feel like I am much more optimistic in this blog then I can be in real life sometimes.  But, I do my best.

So, another scan Friday (today I guess now).  More waiting and anxiety.  However, I told them I didn’t want to know the results until after the weekend.  My 3 boys have plans for mothers day- we have a trail to hike, some fish to catch, a picnic to enjoy and I don’t want to have it overshadowed by bad news or trying to figure out treatment plans.

Happy mothers day to all the mama’s out there and to those with angel mama’s.  May the love and joy your mother shared with you be celebrated whether you can hug her or just hold her memory close.  To all those who are moms – treasure each moment with your babes.  Hold them close and don’t take anything for granted.  I’m sure our boys are overwhelmed with the amount of hugs I am slinging these days.  I basically don’t let them leave or enter a room without a hug.  Jay does the same thing with them…  I think we all just want to hold each other as much as we can.

with hope,
Lara