God’s Little Beta Tester

Sometimes I think that my role in this lifetime is to experience stuff that’s not always easy, so that I can share my learnings and maybe spare someone else a little bit of pain. I don’t mean that as a complaint at all.  Someone needs to beta test stuff.  It’s how we learn what works, and what doesn't.

I thought I would share a little story of what happened to me yesterday when I had to teach a lesson to some nice women that work in a doctor’s office.  I hope they enjoyed it as much as I did…

So back when I was diagnosed, I got tested for BRCA, which is a gene that exists in a small amount of the population and increases the carrier’s risk of breast and ovarian cancer to something like 85% probability.  Five years ago, insurance companies were not always willing to pay the $3500 testing fee, and so I elected to get tested for a variant that is more common among women of Eastern European Jewish ancestry.  The test was less expensive and if I tested negative for that variant, the chance that I had BRCA 1 or BRCA 2 was then lower than the general population.  I was negative.

Fast forward five years.  My gynecologist, a great doctor and a lovely woman felt very strongly that I should get tested for BRCA 1 and 2 because it would be better to know one way or the other.  I agreed, they took my blood, told me we would have results in 2-3 weeks and sent me on my way.

Two weeks later I get a message from her office that I need to call them.  Now, keep in mind that this office has a strict policy that they release test results online, via a message in your patient profile.  Like any cancer survivor, or person that has gotten bad news from a doctor, I got a bit nervous.  When I called I was told I needed to make an appointment to come in and get my results for my BRCA test.  My heart sank.  A positive BRCA test for me would likely mean having my ovaries removed and having a double mastectomy.  Then they told me that they couldn’t get me in for several days.

That’s when I kind of lost it.  I begged them to have the doctor call me and tell me my results over the phone.  They refused.  I told them that for me, waiting to hear bad news is worse than actually hearing it.  They said, no, that’s our policy.  I was pretty distraught.

That’s when they said, “Oh, just so you know, everyone comes in for their results, positive or negative.   So, just because we want you to come in, it doesn’t mean you are positive.”

And that’s when I really lost it.  I said, “Let me give you a little advice from a cancer survivor.  The time to tell the patient that EVERYONE has to come in to get their results is when you draw their blood, not when they are crying and begging you to spare them the agony of waiting for their bad news.”

Crickets….and then, “I am so sorry, you are absolutely right, and I am going to have the nurse call you today and give you your results, but you still have to come in for your appointment.”  Fair enough.

The nurse called.  I am negative yet again.  And God’s little beta tester has completed another small mission in helping the medical profession humanize the cancer experience.

The Waiting is the Hardest Part

My parents have three rules that they have constantly reviewed with my nieces, since each was old enough to talk:

Rule #1 – Patience
Rule #2 – No whining
Rule #3 – Patience

Those can be difficult rules for a six year old to follow, and I confess, they are equally as difficult for me.  I have been known as the least patient person on the planet.  Seriously.  Ask my mom.  When I decide what I want -  I just want it now.  Veruca Salt has nothing on me!

Well guess what?  Cancer, cancer treatment and recovery all have their own agendas and their own timelines.   When I started chemo, the nurses told me the exact date that I would lose my hair.  I immediately calculated the date at which it would start to grow back.  I started chemo in July, and knew I would finish in December and in the beginning I would lay in bed and calculate how long my hair would be come January, come March, come May…I burned a lot of time waiting for my hair.

That was a long, hard wait for someone as impatient as I was to feel and look ‘normal’ again, and what I finally realized was, the wait (or as I came to call it – Hair Watch ’08) was teaching me a very important lesson about patience.   Waiting for my hair to come back gave me time to confront my beliefs about how I looked, about what was normal, about whether or not I could see my true beauty without the trappings.  I won’t say that it’s always easy – I am a woman after all – but that time of waiting and reflection helps me to look at my post cancer body, scarred, a little bit chubby and menopausal though it may be as something strong and beautiful.  I still struggle with patience, but I remind myself that things happen in their own time, and if I can release a bit of control, I can learn something amazing while I wait.

And yes, my hair is back in all its glory, long and thick and shiny.  And in January, on the fifth anniversary of my surgery, I plan to cut it off and donate it to someone who is laying in bed, waiting for her hair to grow back.

What ComEd can learn from a cancer survivor

It's been over a hundred degrees for three days in a row now, and, inevitably the power went out.  ComEd needs to take a lesson from a cancer survivor on capacity planning.

When you are going through chemo or radiation, recovering from surgery, or dealing with the emotional effects of a cancer diagnosis, you learn a lot about capacity planning.  There are days when just getting out of bed can be tough, and days when you feel like you can take on the world.  You need to become very selective about where you spend that precious energy.

My capacity plan was prioritized something like this:

1. Things that made me happy - time with friends and family, playing with my nieces, seeing a movie or enjoying a nice dinner out.
2. Things that kept me healthy - 30 minutes of exercise a day, getting enough sleep, seeing my therapist, playing with my nieces (emotional health counts you know)
3. Things that I needed to do to safeguard my assets  - work (paycheck and health insurance are important, especially when you are dealing with cancer.)

The rest of it -  laundry, cleaning, spending time with people who drained or annoyed me, worrying about things that really didn't matter, I tried to let go.  There is usually someone in your life with enough capacity to help with things like laundry and cleaning, and there is nothing like a cancer journey to guide you away from toxic people and worrying about things that aren't important.

So, ComEd, if you need some help with capacity planning, you let me know.  The rest of you, take a minute to think about where your energy is going, and if you need a re-prioritization, I am here to coach you through it.

The Power of a Wish

Did you ever hear the phrase, “Be careful what you wish for? You just might get it?”

Wishes are powerful.  I know this first hand. 

I have had what many would call a charmed life.  Loving parents, a fabulous education, friends, hobbies – nothing that I have wanted has been too far out of reach.  And probably because I didn’t have to work too hard at anything, I never really tried to figure out what I was meant to do, or meant to be.

By the time I hit 40, I had a leadership role at a respected ad agency, a huge condo, all the trappings of success, but I was miserable, unfulfilled and bored - disconnected from any sense of purpose.  And so I made a wish.  I wished that there was a way that I could make a six-figure salary, and just lay on the couch, reading books, watching TV, not having to go to work every day and not having to recognize that I was unfulfilled.

On July 5^th 2007, my wish came true.  The phone rang and the voice on the other end of the call said, “You have cancer.”  Within a month, I was too ill from chemo to do much more than lay on the couch, reading books, watching TV, and since my agency didn’t have a medical leave policy and had to pay me, my wish was complete.

The universe will always give us what we ask for, without judgment, and I am so grateful that my wish came true.  Because now that I know how incredibly powerful I am, I have a new wish.  I wish to live a life full of meaning and purpose, a life which connects me to people, a life in which I can use what I know to help others wish wisely, and make their wishes come true.

Today, July 5^th 2012, I take the first step in granting my own wish.  I am announcing the launch of my coaching practice.  I am The Cancer Coach and my wish is to empower Cancer Survivors to make their wishes come true.  Whether it’s to better manage the demands of treatment, to achieve balance and wellness, to improve relationships and connections to others, or to start down a path paved with meaning and fulfillment, I’m here.

So I ask you  - What do you wish for?  I would love to help you grant your own wish.