Cold Hands, Warm Heart

Family Photo 12/14Next month will be 3 years since I was diagnosed.  My life is full and active and not-at-all about cancer, so check-up days are surreal.  And emotional.

During treatment, Emory was the only place I felt I belonged.  Now, I am out of place in my healthfulness.  And I get overwhelmed with empathy for the people in the waiting rooms.  Endless appointments, bodies that are always hurting, life or death decisions to make for which they’ve received no training.

If anything, it’s all a heavy reminder that life can change in an instant. Oh, how we need to cherish what we have!

Flashbacks as I walk through the halls.
Going up and down those stairs to raise my blood counts so I could stay on my chemo schedule.

The huge guy in the lab who scared me with his gruffness.  Then made me laugh talking smack about his friends on the Emory softball team.  Then became my favorite person on the planet when he shared the climbing stairs/drinking Coke secret.

The kids playing Queen of Hearts on that bench while they waited for me to get my Neulasta shot.

Being irritated by the “washing hands saves lives” signs in all of the bathrooms.

Going home after a 12-hour day, grateful for the meal on the front porch and the friends who acted like having our kids over for the longest playdate ever wasn’t inconvenient.

3-months Check-up
On 12/5, I saw Joan at the Survivorship Clinic.  Physical exam, bloodwork to check liver function and make sure there’s not evidence of secondary blood cancers.  And, talking.

Most recurrences are discovered because of something the patient reports, so they ask and I tell about every little physical thing.

But there’s not much to complain about!  I do have intermittent pain in my left arm – from a nerve or enlarged lymphatic vessel – and sometimes I get itches deep under my skin that I can’t scratch.  Because I’m still numb, I have scratched myself bloody.  But it’s all just nerves growing back.

Raynaud's syndromeMy other symptom is “Raynaud’s syndrome.”  It’s not unique to cancer survivors, but the cause of mine is almost certainly chemo. When my hands get cold, my fingers get prickly, then numb. Then they hurt and turn white.  The cool, damp weather we’ve been having makes it almost a daily issue.  I’ve dropped groceries, lost hold of our dog’s leash and (gasp!) not been able to use my phone.   But as soon as I can warm up, all is ok.  Nothing to do but try to prevent it.

Thank you, Santa, for putting hand warmers in my stocking!

My next appointment is March 6 with Dr. Zelnak.  She co-developed my clinical trial with Dr. O’Regan, who has left Emory for another position.

We’ll be forever grateful to Dr. O’Regan and wish her the best.

Thanks for checking in!  All is good – I’m a lucky one.
Nicole

Woman with breast cancer…

To the men in my life, especially my husband, I love and appreciate you so much!  But, oh my gosh, this made me laugh so hard:

Woman with Breast Cancer

 

A Wonderfully Boring Health Update

Jun 14 - Nicole on windy ship deck blog

Check out my windblown hair!

I’m excited to be posting again after this site crashed December, 2013.  One day, most of the text and images from every post – there were hundreds – disappeared.

Not the end of the world, certainly, but upsetting to lose the cancer story I’d hoped might help someone else, and the art lessons and party ideas that have given me a creative outlet since I left advertising.

For my blogging friends, back up your posts! If you do lose content, try “wayback downloader.”  For $15, internet archives were scanned and I was sent a zip file with a lot of my content.  Many thanks to Joey and Brian for helping!

Health Update
I finished treatment for breast cancer (triple negative, Stage 2) in January 2013, and had what is likely my last reconstruction surgery in June, a year ago.  I still have tightness and nerve pain in my left shoulder and arm, and intermittent tingling in my fingers, but nothing that keeps me from doing what I want to.  I feel great!

Fitness-wise, I’m teaching Zumba® several times a week, and trying to strengthen the atrophied muscles in my chest, shoulders and arms.  Getting my body moving early on helped tremendously.  I thank Turning Point Breast Cancer Rehabilitation for that.

As for the possibility of recurrence, it’s always in the back of my mind, but not an active worry.

Triple negative survivors have the highest risk of recurrence in the first 3 years, and then, after 5 years, the risk lowers to being similar to those who have had hormone-positive cancer.  For me, those milestones will be January 2016 and 2018.

Research suggests that pathological response to treatment is key.  I had a complete response in my breast, ie no evidence of cancer after chemo, even before they removed the breast tissue during surgery.  But one lymph node still showed cancer – that’s the main reason radiation was recommended for me, while it may not be for other triple negative patients.

I get a check-up at Emory every 3 months, rotating between my medical oncologist, radiation oncologist, and the head nurse at the survivorship clinic.  There are no scans or bloodwork if I tell them I’m feeling fine – just a physical exam.  They are, however, Johhny-on-the-spot when I report anything unusual.  So far, I’ve had ultrasounds and biopsies for what turned out to be post-surgery cysts, and a chest X-ray and MRI because of asthma symptoms, which was “radiation pneumonitis.”

Dr. O’Regan has said that she may present an update on the clinical trial I was part of during the San Antonio Breast Cancer Symposium 12/14.  But it’s still ongoing with only about 20 participants, so it doesn’t sound like the standard chemo cocktail for triple negative will change any time soon.

Finally, I cannot thank our family, friends and neighbors enough for your support and encouragement.  You came through for us in a big way, and it made such a difference.

Going forward, my health posts will be few and far between.  I’m sending healing prayers to Kristi, Kristin and Stacey – all vibrant women still on the rollercoaster of treatment and surgeries – and to the tough, sweet, wonderful family of my cousin Kurt.

Much love,
Nicole

 

 

Patient Perspective for Turning Point

One of the fantastic physical therapists at Turning Point Breast Cancer Rehabilitation asked me to tell my cancer story for their newsletter.  Here it is, published in their December 2013 Newsletter:

Patient Perspective
Getting ready to leave the house one day, I adjusted my V-neck shirt to cover my bra.  My fingers hit a lump on my chest that I knew right away shouldn’t be there.  I was 41.

I’d worked for years with the American Cancer Society, so I was more prepared than most when the biopsy was positive.

We saw a breast surgeon first.   I couldn’t wait to be rid of the cancer and I expected to leave that appointment with a surgery date.

Instead, we found out that the tumor was fast-growing, triple negative and at least Stage 2.  The surgeon felt an enlarged lymph node under my arm that she was sure was cancerous.  We were advised to find an oncologist and consider clinical trials.

I was scared, but I also knew I was lucky.  My husband had a great job with good health insurance, while I got to hang out with our kids, ages 6 and 8.  While they were in school, I ran and biked the trails along the Chattahoochee River, kick boxed and taught Zumba®, so I was physically fit.  We were surrounded by supportive friends and family.

In March, 2012, I joined a clinical trial that included 6 months of a daily chemo pill, plus Taxol and Cisplatin infusions. A bilateral mastectomy followed, with a partial axillary dissection and reconstruction with tissue expanders.  The expanders were filled, then deflated when doctors recommended radiation.  After my skin healed, they were filled again. My exchange surgery was this past June.

I have wonderful doctors, but cancer is full of curveballs and impossible decisions.  Each step was a struggle.

TurningPoint
After my mastectomy, I walked in to TurningPoint, hunched over and reluctant to move.  Thick, painful cords ran through my arm.  Lauren was confident she could help, and she did, immediately. She said, “We will get you back to doing the things you love.”

Sept 13 - Teaching Zumba Kids for blog-002Since then, she, Anita and Cathy have provided manual massage, fitted me with a compression sleeve, helped me stretch angry muscles and restored my range of motion to nearly 100%.  I have left every visit feeling better, physically and mentally.

The office staff makes getting help easy.  There is no hassle, no redundant forms to fill out.  And, if you know a survivor who needs a treat, send her to Delores for a massage.

Rehab has allowed me to care for our children and home again, and to exercise, which is especially important for triple negative survivors.  I teach Zumba® at the Y, coach Girls on the Run and we just returned from a family bike trip through Montana.  I am back to doing the things that bring me joy.  And I am not defined by cancer.

Thank you, TurningPoint.  And congratulations on your new digs!
Nicole Yates

A lot of things different about this Halloween!

Halloween, 2012

Halloween, 2013

New wig… New husband…

(Why should kids have all the fun?)

Happy November!
Nicole