Things Are Not Always as They Appear


(Yes, I know it’s long, but I promise it will be worth your time)

I know…
…that surgery and scar on my belly.
…that uncertainty, wondering and wanting.
…that search for the expert and regular trip to New York City.
…that feeling of just not wanting to exist, but to live.
…that desire to have children and not being confident it will happen.
…how to say, fuck it, and keep going when people tell you to slow down.
…wanting to be normal, but also not wanting to be normal.
…the art of balancing cancer treatment and dream chasing.
…wanting to be anxious for something other than cancer.
…rare disease.
…the wait for more research and treatment options.
…getting through and not giving up.

Yes, I know I’m not Gabe or a runner of her caliber. Actually, I wouldn’t even call myself a runner anymore. I don’t personally know Gabe.  I don’t know exactly what she is going through.

But, I do know there is so much I can relate to in her story. And I know there are many out there who can relate. I applaud her openness when it would be so easy to go quietly into treatment. Instead she chose to share and I feel a little less alone and grateful for the stereotype she is shattering.

I also know if you passed her (or I) on the street, you might (incorrectly) assume we are healthy because we are young and fit. Then, once our truth was revealed, you might (incorrectly) assume we should be at home with a scarf covering a bald head, cup of tea in hand, while staring out a window.

Cancer’s teachings are infinite and this documentary of Gabe’s race reinforces a truth I know all to well.  Things are not always as they appear.

 

Gabe Grunewald is a professional runner and an adenoid cystic carcinoma survivor. Follow her on Twitter, Instagram her website.

 

And if you needed more evidence that things are not always as they appear:

 

 


Waiting Out Hurricane Harvey

ORIGINAL POST: 8/27/17
UPDATED: 8/30/17

My blog has been quiet these past few weeks. Why? Because I’ve been gallivanting around the southern United States having fun and enjoying summer.

Not only am I feeling great, but there are exciting developments in the recent cancer saga. I returned home from a fantastic two-week trip to New Orleans and Orange Beach, Alabama to discover my insurance covered the first round of PRRT. Hip Hip Hooray! And in even better news, last week’s blood work revealed a 75% tumor marker reduction. This wasn’t a surprise considering how I’m feeling and the significant reduction in my only symptom of facial flushing.

My husband and I decided to take advantage of our good luck and plan a weekend in Galveston Beach before my next scheduled therapy on August 31st.

“NOT SO FAST,” said the universe.

I received a call Thursday from a Coordinator at Excel Diagnostics giving me a heads up on potential therapy delays due to the approaching hurricane. I’m a little embarrassed to say this was the first I was hearing of the situation. See, I’ve been trying to shelter myself from the news because I don’t need any more stress.

But with this development, I tuned in and decided a trip to Galveston during a hurricane was pointless. Ever the planner, I quickly came up with a back-up vacation, which was to take our scheduled flight to Houston Saturday morning and drive to Dallas for the weekend. We held our breath as we headed to the airport with notifications alerting us that we were “On Time”, but 30 minutes before our departure, the flight was cancelled.

Not too worry. I had a Plan C. So, we rented a car in Nashville and are taking a little southern road trip. I’ve always wanted to visit Memphis, Little Rock and Dallas (said not many people).

Last night we stopped in Memphis, got a room at the Peabody and bounced around the lively city on a Saturday night. Today we drove to Little Rock  and visited the Clinton Presidential Library. Tomorrow the plan is to drive to Dallas for more visiting while watching the conditions from (not too) a far. Plan C included hopes that the situation would improve by Wednesday when I’m scheduled at the clinic.

NOT SO FAST…

I can rationalize with myself that worrying about things outside my control (ie, cancer and hurricanes) is a waste of time, but  I can not help but be selfishly stressed over the uncertain timing of my next therapy.

But the truth is that I/we am/are not powerless. We can pray. If you are not a prayer, just replace the word with send good vibes, thoughts, positive energy, etc. The people of Texas need our prayers, especially those in harm’s way and those who will experience medical emergencies. We need to pray for the people whose medical treatment and surgeries will be delayed because of this catastrophe, especially those who are critical. We need to pray for those who will not have the financial resources to recover from such an event. We need to pray for our government, rescue and medical workers who selflessly sacrifice themselves for others.

This has been (yet another) reminder how out of control we really are when it comes to nature and science. We all hold dual citizenship in sickness and health and in safety and harm no matter our color, religion, bank balance, location, gender, orientation and level of power.

So, after all of those prayers, if you have an extra I’d gratefully accept them as I watch and wait from Little Rock tonight and Dallas tomorrow.

***UPDATE: 8/30/17***
Seconds after we crossed the Arkansas-Texas state line, I received an email from Excel Diagnostics rescheduling my treatment to September 12. It was a relief and a disappointment. Still driving towards Dallas, we debated if we should continue and try to get a flight home or just turn the car around. After several failed attempts to call the overwhelmed airline for our options, we decided to drive. By taking turns every couple hours, podcasts, a book on tape and making calls to change our plans, the eight hour drive went surprisingly fast. Fortunately, we were given full refunds for all our reservations, so all we were really out is the time and effort.

My first therapy took a lot of coordinating and I felt good this one was going smooth until the hurricane hit. My heart breaks for those who are not strong enough, too sick and/or don’t know how to navigate this maze. I also feel guilty for complaining when there are people in Texas who’ve lost their homes, animals and loved ones. It will only take me a couple days to re-plan for my next therapy, but it will take some years to recover from this.

“We need each other, and we must care for one another.”
Bill Clinton, 1993 Inaugural Address

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Tonight’s beautiful sunset over Downtown Little Rock

7 Yoga Truths for Cancer & Life

Summertime will always put me in a reflective state. It seems to be my season of challenge, transition and transformation after being diagnosed with a Pancreatic Neuroendocrine Tumor in 2014.

This time last year, I was deep into my 30-day, 200 hour yoga teacher training “intensive”, which is the most accurate description of the experience. I have never pushed myself more physically, mentally, spiritually and emotionally. I cried therapeutic tears everyday and was surprised how much unresolved trauma I had stored in my body because of cancer. It was the best gift I have given myself and I graduated the program with so much more than a deeper understanding of the physical practice.

One of the many concepts that resonated with me during the 30 days was the Seven Axioms of Teacher Training. Over the last year, as I’ve continued to ride the rollercoaster of illness, these universal truths have been comforting reminders.

  1. You’re exactly where you’re suppose to be. This is a hard one to accept when an illness is involved. When I was sick, if someone said this to me, I probably would’ve punched them in the face, but now, I get it. I would give back cancer in a nano-second, but that means I would also have to give back the meaningful friendships I’ve created, the completion of the El Camino de Santiago, yoga teacher training, my career as a writer, my role at the FDA, my thirst for adventure, etcetera. All these wonderful things are a result of cancer. So, am I exactly where I’m suppose to be? Unfortunately and fortunately, yes.
  2. Fear and pain are life’s greatest teachers. Do I need to say anything more? I have learned so much from illness because it has brought on fear and pain I never realize existed and through that same fear and pain, I have learned how to live and not just exist. Cancer has taught me that I am so very strong, resilient and courageous, a word that makes me roll my eyes. I have been able to do things I never thought I’d be able to do because of cancer. For instance, before cancer I coward at the idea of needles. Now, I could give myself an injection while climbing a mountain at the same time. Cancer has also taught me deep compassion for my fellow humans. Others are often shocked when I tell them how the disease has impacted my life because I look like a normal, healthy, 37-year-old.  This is proof we never know what others have going on based on outward appearances and for that, I am kinder to people.
  3. Laughter and play are the fountains of youth. I find nothing fun about cancer. I often say it is the opposite of fun. But, I think within the non-fun, it is important to keep laughing and retain a childlike sense of play. In moments where it’s too hard to keep things light, call for backup. My husband is a major source of keeping me laughing and has succeed to make me smile in dark moments. When he’s not around, I watch YouTube and am surprised how much time I can spend watching puppy videos.
  4. Exercise and rest are the keys to vibrant health. We all know this, yet, so many of us ignore it. Before cancer, I exercised like crazy, at the expense of sleep. I believe, sleep deprivation was a contributing factor to my diagnosis. Now, I make sure I get at least eight hours and move my body every day. I wouldn’t describe myself as having vibrant health, but I would say I am more fit that the average person, which has been one of my secrets to managing a chronic illness.
  5. Touch and intimacy are basic human needs. We’ve all seen the study about babies who do not thrive when they are not touched and cuddled, yet, as we grow older, we assume that need dwindles. If you’re unwell, you should double-up the hugs and love.
  6. Everything is impermanent. For me, this is the most powerful axiom. It’s context is that everything is temporary. We all walk around with an illusion of control, which is not the case. When you look deeply, you will see that there are no guarantees. Health is temporary. Sickness is temporary. Happiness is temporary. Sadness is temporary. One of the reasons loss of anything is so hard to accept is because we do not expect change. We want our lives to continue on without any uncomfortable interruption. And when the interruption occurs, we are surprised and hurt. Accepting that everything is impermanent has given me great comfort. It has made the natural ups and downs easier to accept. And most important, it has taught me to live each day as if tomorrow is not guaranteed, because it is not.
  7. Everything is connected. I vividly remember the days and weeks after surgeries and chemotherapy concluded. I felt this euphoric connection to everyone and everything down to the core of my bones. Perhaps it was a high level of relief, trauma or PTSD, but I was so happy to be alive and enthralled with everything. I would go for a walk in my neighborhood and notice the tiniest, most beautiful things I never realized were there. I’d often come home with tears streaming down my face and my husband looking at me as if I’d lost my marbles. Everything seemed magical. While some of the feeling has faded, the memories remain evidence that we are all connected to everyone and everything whether we notice it or not.

Whether you are impacted by cancer, another illness or life challenge, I hope these axioms give you the same pause, solace and perspective they have for me.

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