Tag Archives: survivorship

Survivorship is a Thing

Throughout my cancer fight of the past year there has been a defined task: stay strong until there are no more cancer bugs. Keep the family together and keep the family happy – go with happy. I have the distinct honor, and yet, challenge, of moving to the next phase: survivorship. When I heard the term I just thought it meant “the time after you beat cancer.” And it is that, but it is much more. And so hard to describe.

I had a meeting last week with my oncologist called a “survivorship seminar.” I was flippant and jocular about my journey and progress until I realized this was about the rest of my life. It hit me when I got home and I have been a psychic fugue for a week: I am never going to be the same physically or emotionally.

It’s not maudlin, it’s truthful. And, it’s also tricky.

In the cancer fight it was physical – survive, sleep, eat, heal. Now it’s more psychological. Watch for side effects that could signal that the cancer has come back (e.g. monthly self exams of my chest wall which actually makes me a little nauseous to even think about. Getting to know my scar tisssue? No thanks). Make follow up appointments with doctors, including regular three month checkups for the next three years.Don’t go to see a regular massage person because your body is in such a different state than normal. Only go to exercise class that is low impact because your muscles are weak and relearning. Oh, and did I mention scheduling the next round of surgeries because I still need permanent ladies? And, don’t plan on being back to any state of “normal” until at least six months (which for me is May 1st).

I am thrilled, don’t get me wrong … I am lucky to be in survivorship. And as I navigate the new normal I am so thankful for my friends and family and their love and support. And, yes, it needs to continue. Even though the care calendar is gone. 🙂

But a new normal is tricky when your most recent old normal was cancer and the normal before that was moving to Dubai. Navigation is slow as we rebuild what our family responsibilities are – who does this chore this time? Who is responsible for dinner tonight? What is your role? What is mine?

Now I am in the family most days all day – although some days I have to nap or don’t feel well. I am meal planning and shopping; picking up children and organizing play dates. But, every once in a while it catches up with me and I crash back down. I am not used to limitations on my time or my energy and yet I have to be patient. In PreK they learn to be a STAR – Stop, Take A breath. Relax.

Because I am no longer required to “just heal” I feel a sense of pressure to be more … and maybe that’s what this survivorship thing is about. This isn’t just the time after I beat cancer – it’s 2013, the year Davis turns 40, and the twins enter kindergarten. Integrating cancer into that year and that life is what I must do.

And to learn that watching an hour of America’s Funniest Home Videos with my three kids will make you laugh until you cry every time. And that laughter is the best weapon in survivorship. Especially when it is belly laughs at a puppy.

 

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A Year in Review, Survivorship Acknolwedged

In many ways, I am now intimidated to write. When I had a story, a journey, a battle, it was easy – chronicle and share. There was a duty, a responsibility, and certainly a cathartic element. Now, my life is relatively normal. But then again it’s not. And that complexity begs exploring.

Every time I sit down to write, something happens – it’s that time of year. First it’s the chaos and joy of Christmas at our house – gingerbread houses, an elf that has quite a mischievous side, the requisite weird viruses, sinus infections, present shopping and schedule coordinating. There is so much joy. The kids sing along to carols in the car, race to change the advent calendars … and after Friday, there are even more hugs and I love yous and blessings counted.

My biggest debate right now is how to acknowledge the year we have had, without letting it define us. Even the Christmas card – do I include a letter whose sole purpose would be to describe the year we have had and what we have battled? I decided to leave it out. Cancer has had too much control over 2012, now it’s time to move on.

Or is it? I am reminded every time I get dressed and have to put on my Nordstrom ladies. I am reminded every time that I have to take a nap because my energy still isn’t what it used to be. I am reminded when I take my 9 pills at night, including my new friend tamoxifen (no side effects yet but I’m waiting). I am reminded every time I get a request to talk about my journey, to help someone new on the cancer rollercoaster. I am reminded every time I look the mirror or get a compliment on my “new pixie cut”.

I have seen all my doctors and they are all amazed at my progress – my radiation oncologist joked that he would have treated me longer if he knew how well I would heal. It wasn’t really funny. But, the news is all good. Now I move to “survivorship” which actually has classes and responsibility (including regular exercise and stretching). But it isn’t a switch that got turned off – my body is altered, my lens is different.

What a difference a year makes – as I walked a newly diagnosed lady here in Austin through my entire battle I realized how far we have actually come. What we have done as a community – family and friends. We made it through with the family unscathed – the kids happy and joyous, my husband – though not in the position we had planned – happy with his role and hopefully having enjoyed the extra time with us. And I am proud, I am thankful. And I have to at least acknowledge it.

This Christmas season, this holiday season, be thankful for little things – and build memories. This should not be about stuff, it should be about experiences. Create as much joy as you can – that’s what we all hope to remember from 2012.

The mind is a terrifically equipped machine – with memory mostly for the happy stuff. That is another reason to be thankful.

Wards Dec 2012-8

Now, to share with you that I practice what I preach, here is a link to our family pictures: wardspictures.shutterfly.com

A link to the Dinsey SCUBA trip: http://www.youtube.com/watch?v=BuBCX2w1wZc

And, a link to our Ward family Christmas card assembly line: http://www.youtube.com/watch?v=p27EU9bLXa4

Merry Holidays and a Happy New Year. Hopefully 2013 will not be as eventful! Thank you to everyone for your help and love and support in the big and small ways. Love, Team Ward.

Wards Dec 2012-3

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A Pink Ribbon in my Pocket

There’s a Girl Scout song I learned long ago about having a great big brownie smile in my pocket. It always struck me as funny – a smile in your pocket? That’s like having a blink in your shoe. But after this past week, I realize the symbolism as the song played over and over in my head on our vacation.

We went on a Disney cruise – and for those of you interested in the details, I have made a full post here (Disney cruise thoughts) … but for the rest of you, suffice it to say it was magical and exhausting. Somewhere around the second day at sea – when I had gotten dressed up formal in a sassy red number – and after I ran barefoot up five flights of stairs to retrieve our autograph book because we happened across Minnie Mouse in her formal wear in a lounge – I said to myself, I have a smile in my pocket.

Then the next day we went SCUBA diving in Grand Cayman – Davis and I. Now we fibbed a little and told them we had been diving “recently” – it had been nine years for me  since our first wedding anniversary in Belize. I was so nervous on the boat ride out I probably burned a full day of adrenaline. Then we had to do one of those “giant step” entries which always scares the beejesus out of me. I was the last one off the boat. Davis gave me a double high five. Then we held hands.I descended to a too-deep level of 90 feet accidentally because I was having so much fun. No wetsuit! Tons of fish! And, my swim boobs worked!

After we surfaced for air after the first dive, the smile was no longer in my pocket. I was grinning like a crazy person. I just wanted to yell out to everyone on the dive boat – do you realize what I was doing a month ago? Two months ago? Six months ago? Do you know I have swim boobs on? (From then on when I would get ready to go in the water I thought of myself as the SS Lauren strapping on the ladies)

It was the first time I had been in a really large group for a long time – being a “normal” person all day every day where no one knew my story. No one ever looked at me twice – except for the nice meaning Disney guest services lady who asked why I cut my hair – and then recovered by saying I looked like a supermodel. I was so impressed with myself in general. Apart from the fact that I went to bed with the twins, and took a nap or two (who wouldn’t!) I felt like myself again.

But, there is also some resentment. I look around all these normal people and want to shake them – do you know how good you have it? do you know how hard I’ve worked to get here? I also realize that other people probably have something in their pocket – maybe not a smile, maybe a story, maybe a challenge they too have overcome. Maybe not.

For now, our entire family is aglow with happiness – though the trip was not as relaxing as we had planned, it was far more magical and the children are blissful. Ultimately what more could we wish, and what more could we celebrate in this season of thanks.

PS I will try to upload some of the video and link to it – a man on the boat with us took a video and mailed it to us!

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Getting Greedy During Survivorship

I am getting greedy. Today my blog was featured on WordPress Freshly Pressed which means I have a lot of new visitors – Hello Visitors! It also means I have a lot of new emails, new supporters, and new stories. Dude, email going bonkers!

I guess people handle cancer and stress in different ways but I feed on the strength and the words of others. And, I feed on the fact that I can make a difference in the life of others – through my words, through my story. Is that like an emotional vampire? Maybe (though I would not be Team Edward), but I do know that I’m loving that feeling – of making an impact, a difference. If I can help just one person, or save just one woman I thought that would be enough. Nope.

I am a huge movie buff and get quotes stuck in my head. One of my favorite quotable movies is Scrooged with Bill Murray. I often tote my children around and gasp “Oh! Feels like boating a Marlin!” But, here’s one of my favorite quotes and sentiments:

If you give, then it can happen…then the miracle can happen to you. It can happen every day..you’ve just got to want that feeling. … And if you like it and you want it you’ll get greedy for it…you’ll want it every day of your life, and it can happen to you.

I am greedy to make a change in this world. There is so much negativity now, so much uncertainty, but we need to remember that our strength is within and without. Humor and compassion.

One of the major advantages of social media is sharing – share my story (while I go nap) … tell your friends. I am greedy and I make no apologies for that fact. I want to help. I need an agent for my book writing adventure – tell your coworkers. And, Christy has her heart set on having Jennifer Love Hewitt play her in the movie version of this year. We wouldn’t want to disappoint.

On a side note, one of the other major advantages of social media is making you laugh until you snort during televised debates. I highly recommend watching a twitter feed during the next debate – regardless of your political affiliation it is darn amusing. You have to admit between the Biden laughing gas and the Ryan refillable water glass there was some humor last night behind the rhetoric.

Perhaps all of us need to learn to laugh a little more at the hilarity of life, and to get greedy for that moment when it is happy, when it is light.

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