the whipped cream conundrum

Ayuh…made a short trip home to Maine last weekend.  Just a quick overnight to check on my house, visit with good friends and relax on “Big Red” (the most comfortable couch on the planet, as demonstrated by Sadie!).  The trip was great, but way too short.

Usually when I make the trip from Massachusetts to Maine, I have a landmark that lets me know I am home – a sign that says, “MAINE: The Way Life Should Be.”  When I pass this sign as I cross the border on I-95, I generally feel a sense of calm – my blood pressure drops and my anxiety subsides.  But this trip was different; I did not experience that inner peace.  Instead, I became fixated on the word “SHOULD.”

I think it’s safe to say we all have our moments of “shoulds.”  Some are some fairly benign – “I should have a salad instead of a burger” or “I should pass on the whipped cream!”  Others more serious – “I should be married by now” or “I should have bought that house before the market tanked.”  Some of our “shoulds” are quickly forgotten; others we can hold on to for years.

I have a major case of the “shoulds” these days.  Indeed, to paraphrase the State of Maine, I am not living my life the way I think I “should be”- I should be living on my own and independent; I should be working full-time, getting ready for the new school year to begin; I should be able to drive myself wherever I want to go; I should be able to spend part of my summer at the beach – I could go on and on.  But, I can’t wallow in these “shoulds.”  I have to remember that these “shoulds” are not my fault; they are due to circumstances beyond my control.

We all battle our “shoulds” whether we struggle with illness or not.  The lesson for me that I struggle to accept is that, right now, this is the way life is.  Perhaps the State of Maine ought to rethink it’s slogan…

My Mom insisted that I write this addendum to today’s post.  Why?  Because today was a good day – I got to feel like myself for a while.

Today was the first day in over a week that I didn’t have to go to the hospital for an appointment or test, or call my doctor because of some random issue or illness.  Today my pain has been manageable, at times even non-existent.  No meds were changed, so I didn’t have to take a trip to the pharmacy (I’m very popular at CVS these days!).  There was no call from a medical professional about a change in my treatment plans.  Indeed, I even got good news that I don’t have a blood clot as the doctors suspected.  Phew…

Today I took a trip to Target, my retail Disney Land, with my Dad and experienced some retail therapy.  They had their back to school supplies out, and I love school supplies, so I had fun perusing the aisles.  I can’t remember the last time I was in a store.  It’s amazing how it made me feel like a human again.  The best part of the day was lunch with my Dad – he insisted that the only circumstance under which he would drive me to Target was if we stopped for lunch…at Dairy Queen!

After my healthy lunch of a Reese’s Blizzard, it was back home and a leisurely walk with Sadie.  Again, something I haven’t been able to do for the past few days.

All in all, it was a good day.  Lately, they haven’t come around that often, so when they do, I am grateful.

I hope you had a good day, too!

As many of my readers know, Kate Spade is one of my favorite designers. Some may even say I have an obsession – purses, clothing, shoes, jewelry, even water bottles – I can’t get enough!  Several of Kate’s products use the slogan, “Eat Cake for Breakfast.”  Sometimes I think she co-opted it from me – every year I eat cake for breakfast on the day after my birthday!  When I was a kid, I would argue with my Mom that it was totally acceptable – how was it different from eating a donut or a muffin or even pancakes drowned in maple syrup!  It was a logical argument and I was pretty convincing.

It’s not so much the act of eating cake for breakfast (although a nice slice of yellow cake with sugary vanilla frosting sounds great this morning), but what the phrase evokes – whimsy.  I love the word whimsy; whimsical.  I can actually feel the word when I think about it – I can feel joy in the little things.  Eating cake for breakfast is like having whipped cream on my white chocolate mocha – finding a slice of joy in a small action.

I received the best care package the other day from some colleagues. I laughed and smiled as I discovered, among other things, all kinds of candy, puzzle books, trashy magazines, a gift certificate for a much needed manicure, and even a toy for Sadie.  As I opened each gift, I felt my spirits lift; it felt like eating cake for breakfast.  In the moment, I let go of my frustrations and embraced the whimsy.

So, thank you, Kate, for reminding me to keep finding whimsy even in the midst of chaos.  I promise I will eat more cake for breakfast (so to speak!)!

Last we left things the score was Treatment: 0, Cancer:1.  Endocrine (hormone) therapy was unsuccessful, so on to the next treatment option.  While chemotherapy was on the table for a hot minute – I spent most of July 4th weekend coming to terms with having chemo in my life – just a few days later the “team” came back to me with a proposal for radiation and surgery.  (As I mentioned in my previous post, I have to remember that I am living my life moment-to-moment).

At this point, radiation makes sense – the tumor is localized and there is no evidence that the cancer has spread to other areas of my body.  The goal of radiation is two-fold – shrink and sterilize the tumor.  Sterilizing means killing the cancer cells so that they can surgically remove the tumor without worrying about seeding (the medical term for spreading).

Yep, surgery…that’s a new one for me.  I didn’t really see that coming.  Indeed, I actually thought I’d have some good news on the radiation front – my radiation oncologist proposed to a “committee” that I have proton radiation instead of photon radiation.  Why would this be good news? Photon is the traditional form of radiation that zaps an area of the body, as opposed to proton which zaps a very targeted location.  It’s hard to think of an analogy; the best I can come up with is a lantern (which shines light on an area) versus a flashlight (which shines light only where directed).  The benefit of proton is reduced side effects – both long and short-term.  There are less than a dozen proton machines in the country and one is at Mass General.  Because there are so few machines – it is “competitive” to be approved – the radiation oncologist must demonstrate that the risks associated with the photon will be significantly reduced with the proton.

Unfortunately, I was not approved for the proton radiation.  The committee determined that there was no significant benefit with the proton.  I will move forward with photon (5 weeks, 5 days a week starting on July 30th) and then see what happens with the surgery.  I’m going to deal with what I have to do now and worry about the things I can’t control (surgery) when the time comes.  I am feeling relief that I have a plan for the next 5 weeks – I don’t feel trapped in the treatment conundrum.

I am a Control Freak.  But, along with a cancer diagnosis comes a loss of control.  For example, about a month ago, I lost one of the few things I felt like I still had control over – driving.  Since I am on a high dose of pain killers, I cannot drive for the time being.  For me, driving represents independence – I can run errands, take Sadie to the park, meet friends in the city for dinner, or drive home from Massachusetts to Maine.  Without the ability to drive I feel trapped.  I have to rely on others.  I have to change my lifestyle and routines.  I no longer have the control of doing what I want to do when I want to do it.

I am not simply losing control over my body; I also feel like my grasp on things such as work, relationships and finances is quickly slipping away.  Cancer is unpredictable and I am learning to be flexible to accommodate this fact.  I’ve had to cancel plans and adapt my goals to fit some of my limitations.  Instead of looking toward the future, I live moment-to-moment.

MD Anderson Cancer Center, one of the leading cancer centers in the country, recently published an article about “How to Cope with Loss of Control as a Cancer Patient”.  I think some of their suggestions may help me as I let go of the things I can’t control.

• Set short-term, achievable goals. This reminds me of the movie “What About Bob?”  I need to take “baby steps” when it comes to goal setting.  I may not be able to read a book in a week, but I can hold myself to reading for 10 minutes a day for the next week.
• Avoid thinking in terms of ‘should.’ There are just sometimes when I have to let myself off the hook, not be so hard on myself.  I am learning to say “no.”
• Seek out happiness and enjoyment.  I have the luxury of time to do the things I love – reading, writing, cooking, spending time with friends – and learn new things – how to make cold-brew coffee, training tricks with Sadie.
• Find ways to express your emotions, both positive and negative.  Getting out of my bubble and writing this blog helps me manage my feelings.  I don’t feel trapped when I share my experiences, both good and bad.
• Be proud of your strength and courage.  People will say to me that I am strong and my response is alway, “I have no choice.”  The truth is that I do have choices, and I choose to bet on my strengths and I don’t quit.
• Consider how this experience helps you grow. I had a teacher who once said, “A problem is an opportunity in work clothes.”  Over the years, my experiences with cancer have helped me build stronger relationships with friends and family and take risks in my career.  I look forward to seeing how my current fight will impact my growth.