Tag: cancer treatment

Things Are Not Always as They Appear

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(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

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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

The Anxiety Reduction Plan

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outlivingit

As featured on First Descent’s Out Living It blog

This blog was featured on First Descent’s Out Living It blog. First Descent’s is a non-profit that offers young adult cancer survivors (FREE) adventure trips where they learn the healing power of community and nature through participating in activities such as kayaking, rock climbing and surfing. In September 2016, I attended a First Descents Surf Program in Santa Cruz, California. Read about that here. If you’re interested in learning more about this wonderful organization, check out their website, https://firstdescents.org.

If you’re reading this, you don’t need me to tell you that cancer is a sneaky trickster. The disease invaded every corner of my life and just when I think I’ve got it figured out, it jumps up and grabs me from behind. It’s latest surprise – anxiety.

I was diagnosed three years ago. In retrospect, it’s pretty incredible anxiety only recently crept into the equation. For some reason, I thought I would get by unscathed by this common side effect of cancer.

My relationship with anxiety started one morning in March. I woke up to a missed call from my doctor’s office. It wasn’t even my oncologists office, but the mere presence of a doctor’s number in my call log triggered a misfire in my brain causing me paralyzing fear. I could not do anything the entire day but obsess about how I was going to suffer and die. Instead, I spent my waking hours crying, clenching every muscle and felt as if my lungs were closing in on themselves. The next day, I was fine.

A few weeks later, it happened again.

I often see articles suggesting anxiety victims to relax, exercise, meditate, get enough sleep, focus on the positive, etc. Admittedly, I might have even doled out some of this terrible advice myself in the past. After much thought, I realized the reason this is bad advice is because it’s not specific enough. Talking with my therapist, she explained that in the midst of anxiety, our brains do not function sufficiently where we can even come up with ideas to make ourselves feel better. She then urged me to create an Anxiety Reduction Plan consisting of specific activities I can execute when anxiety strikes. Here’s what I came up with for myself:

Go for a walk, run or to yoga
Call a friend to hang out
Memorize, write out and repeat to myself (I can now recite three Maya Angelou poems, the seven axioms of yoga teacher training and countless famous quotes)
Do a (yoga) forward fold (this pose has been proven to reduce anxiety)
Close my eyes and take 10 (or 100) deep breaths
Write a reminder message on my hand (“You’re okay,” is my go-to)
Write a list of 100 things I’m grateful for
Clean the fridge, floors, garage (I love organizing)
Go to a park with some markers and a coloring book
Send a card or gift to someone I’m thinking about
Do a random act of kindness
Paint something
Take a bath or shower (something about water and being clean makes me happy)
Create and execute a schedule (7-7:30 drink coffee and catch-up on news, 7:30-8 shower and get ready, 8-12 work, 12-1 lunch, etc., etc. Sometimes, I just go through the motions, but it’s better than obsessing all day)

Now, when I wake up and feel the walls closing in, I pull out my sheet of paper and start running down the list. As a disclaimer, I’ll admit that going through these motions does not always take away or reduce the anxiety, but for stretches of time I am redirected, which provides doses of solace.

As it turns out, my therapist and I are not on the brink of discovering a new physiological method. I recently listened to the Good Life Project podcast and later found a Ted Talk describing the approach the American Psychological Association calls, Positive Activity Interventions. Their studies also show being told or trained to “think positive” and/or confronting past trauma isn’t enough. Instead, their research revealed consistent simple actions, such as those listed above, not only make the miserable less miserable, but, over time, reinforce positive states of mind and improve levels of happiness.

So, what’s on your plan? Now, write it down, fold it up and put it in your wallet. Hopefully you’ll never have to use it.

Listen to The Good Life Project podcast: On Awe, Positive Actions, Anxiety and Depression

Read the full study, Upregulating the positive affect system in anxiety and depression: Outcomes of a positive activity intervention

Watch the Ted Talk, The New Era of Positive Psychology: