Review: Everyday I Fight

51zYCKX2OoL._SX332_BO1,204,203,200_I’ve been hoarding this book from my public library for months and received word they want it back, so I’ve spent the last few days immersed. Disclaimer: I love Stuart Scott and first remember him, not from ESPN, but the VH1 documentary series, “I Love the 70s/80s/90s”. He was hilarious and those are totally worth watching on YouTube. They are hysterical and will remind you of all the forgotten pop culture trends of your youth.

I digress.

I fell even more in awe of Scott when his 2014 ESPY Award speech went viral around the time when I was diagnosed with a Pancreatic Neuroendocrine Tumor.  In his inspiring speech he encouraged those “in the fight” to cry, “Live. Fight like hell. And when you get to tired to fight, then lay down and let somebody else fight for you.” I still can’t watch it without sobbing. And when he died in January 2015, I took it personal. So, I should’ve known that reading his words would hit me right in the feels and leave a puddle of tears and tissues on the floor next to the couch.

‘Everyday I Fight’ expressed many of the thoughts that pass through my brain regularly. Let me share a few passages and sentiments I found powerful:

“Once you’re told you have it, cancer is never not with you. My life was now forever divided between the before and the after of my diagnosis. I’d look at people walking by and I’d think: ‘You don’t have cancer.’” Then, “I came to realize what I was really doing making these observations: I was noting the innocence of others. And on some level, I was mourning my loss of the same. I would never have that again. That carefree, total immersion in simple moments. From now on, whenever I laughed, it would no longer be an innocent laugh;” Wow.

“There’s not any time of any day that you forget you have cancer. You never have a moment when you say to yourself, ‘Hey, wow, I forgot I have cancer.’” I feel like this could be applied to situations where family or friends don’t mention the word in my presence. Perhaps they are thinking it will only remind me. And I’m here to echo Scott – I am NEVER unaware that cancer is a part of my life. It’s better to acknowledge it and move on than to be silent.

Later he describes his surprising indifference when his doctor told him his body showed no signs of disease. His response to the “good news”: “that anxiety never leaves you. In fact, it only gets worse – because you’re no longer taking proactive steps to combat the disease.” Man, I have been there. In fact, I’ve notice my anxiety is heightened when I am classified as “No Evidence of Disease”.

Scott reached out to Lance Armstrong for advice who told Stuart it took 12 years of clear scans for that anxiety to fade. 12 years where he didn’t have cancer on his mind every second of everyday. 12 years! That’s over a decade where Armstrong was killing it on the bike – okay, say what you will, but the man is an endurance athlete through and through.

After the inspiring ESPY moment, Stuart wrote of the most impactful review of his performance written by then Slate intern, Eliza Berman, “The Most Moving Thing About Stuart Scott’s Speech at the ESPYs,” where she writes, “Cancer is a ‘battle’ People with cancer are ‘fighters’ and if they don’t die from the disease, they are ‘survivors’…The problem is one of language. We have a tendency to foist heroism upon people with cancer in a way that might, at first glance, seem generous and celebratory. But it can also be damaging…Saddling people with cancer with Herculean expectations fails to acknowledge that it is absolutely normal to feel afraid, to feel like you can’t go on, to actually want to give up…This guy (Stuart Scott) who the video showed in the (literal) boxing ring, and on the sidelines of his daughter’s soccer game – even this guy sometimes can’t fight…The world needed to hear that. Scott’s public ambivalence about the superhero cape he’s been given was a gift to all those who don’t always feel like superheros.”

Truer words have never been spoken on the subject of cancer. To read the whole article, click here and if you need a little inspiration or perspective today, (re)watch Stuart Scott.

May he be upstairs screaming “BOOYAH” and jamming to “Rappers Delight”.

 

Hands in the Air if You’ve Had Radiation

The last week of September I took advantage of a cheap flight and travelled to my home state of Michigan for a week of visiting with family, friends, my beloved home yoga studio, all the yummy food I miss and cooler fall weather.

I also decided to take this opportunity of proximity to drive to Toronto and visit my dear friend, Kevin. Those of you who read my blog regularly might recognize him as the main character from my days on the El Camino de Santiago. (Catch-up on those here)

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Kevin in his natural habitat

Toronto is only a few hours drive from Detroit. As I crossed over the border, I texted Kevin giving him my ETA and joking that I had successfully duped border agents because I won’t be coming back to the United States. I mean, how could I resist affordable healthcare, sane leadership and Tim Hortons? I’ll tell you how – snow and cold weather. Politics, healthcare, coffee and hypothermia aside, Kevin, I and his partner had a lovely evening catching up, followed by Kevin and I spending the next day eating and walking around his Toronto neighborhood (a la Camino style).

On the way home, I enjoyed the drive and opportunity to catch up on my podcasts. Thankful for only one car ahead of me in the US Customs line, I pulled up to the Border Agent window and handed him my passport, ignorantly thinking I’d be home soon for a nap before evening yoga.

“Ma’am, have you had any recent medical procedures?” How much time do you have? Was my first thought. Then I looked in my rearview mirror to see six Border Agents and two German Shepherds.

I explained that I had a radiation procedure three weeks ago and the group of agents asked me to pull over to Secondary Inspection. It was a little surprising to find I’m still emitting radiation even though I’m well out of the quarantine period of six days for pregnant women and children and two days for general public.

In Secondary Inspection I retrieved the card provided to me by Excel Diagnostics – Thank God I kept it. They asked me several questions about the procedure all the while scanning me with a radiation detector, which first indicated I was emitting “Plutonium”. The following several scans revealed an “Unknown” substance.

Since they couldn’t determine the isotope, Border Agents asked me to come into the US Border Customs & Immigration building while they “called it in”.

While I sat and waited in the lobby, the only other person who entered the building for Secondary Inspection was a man with a turban, who was held by Agents at his wrists and taken into a room. I have no idea why he was selected for additional questioning, but the skeptical liberal in me drew some conclusions. The Agents never doubted my story and were only following protocols when I was told they’d have to “call it in”. There was no holding of my wrists and I wasn’t taken into a room, even after testing positive for Plutonium. Instead the Agents offered me a bathroom, let me hold onto my passport, called me “Ma’am” and promised they would be quick. I’m not trying to make a moral of the story case here, but a large part of me felt for this man and others who endure this type of treatment throughout their lives.

For those of you who have travelled to other countries for PRRT or another radiation procedure, this story is not unique. Had this experience occurred while I was a cancer underclassman, it might have upset me, but as I enter my senior year as a survivor, I was able to call my husband laughing as Agents cleared me 30 minutes later.

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Cloudy with a high chance of affordable healthcare

PRRT Diary #2: Sailing

This news may be a re-run for those of you who read regularly, but it’s deja vu worthy – my insurance company paid the first claim on Peptide Receptor Radionuclide Therapy (PRRT)! And the heavens opened to reveal a chorus of angels singing hallelujah. Assuming Blue Cross Blue Shield of Michigan will continue to pay, the fact that we won’t go broke paying for cancer treatment is darn exciting.

I could hardly believe how quickly the time flew by between my first and second therapies. This is thanks to the wonderful busy-ness of summer which included a two week vacation with my in-laws from France where we visited New Orleans and the Alabama Gulf Coast. Unfortunately, my vacation was cut a few days short because I needed to get back home for blood work to clear me for the next round of PRRT. Honestly, I probably could have done it at a clinic near our vacation spot, but as I chronicled in my last PRRT diary entry – the coordinating is exhausting.

My labs revealed a 75% tumor marker reduction, good blood counts and a high functioning liver, even with cancer currently renting space. (Raises hand for virtual high-fives…)

To keep the flow of good news coming, I was (and am) feeling awesome. Other than the 10 days after PRRT #1, I am at the yoga studio and writing desk daily with my regular gallivants around town. Basically, cancer and PRRT have not slowed me down.

So, yeah, smoothing sailing into treatment number two and if you’re a sailor (I am not) you know how quick journeys can change – waves, wind, storms…hurricanes.

I’ve already detailed my indirect aches and pains due to Harvey and Irma, so I won’t recap, but you can catch up here and here.

I will take this opportunity to give props to the team at Excel Diagnostics for being at the top of their game in the middle of their own personal chaos. Those of you who deal with chronic illness know the how invaluable this is to have a committed, trustworthy team. (Fist bumps to Excel Diagnostics)

Hurricanes, reschedules and traveling aside, on Sunday, September 10th, Fabien and I left for Houston. Arriving early, we talked of big plans to be tourists in Houston when we landed only to find ourselves napping at the Residence Inn all afternoon. Meh, whatever.

Monday, it was back to reality. I woke up early, walked from the hotel to Excel for an MRI, Chest CT and Renal Scan. It’s a surprise how I could do these tests in my sleep now. Actually, I always ask – can I sleep? Years ago, I was a little ball of anxiety. Let’s just call that progress.

Tuesday was therapy day. I met with Dr. Armaghany in the morning for a quick check-up, who shared a general update that all tumors are stable. Three cheers! We then headed to the therapy room where my amino acids around noon, the Lutetium-177 around 12:45 and by 1:15 nausea arrived. It’s strange because nausea wasn’t as strong compared to the previous time, but I pretty much spent the afternoon vomiting. As soon as the amino acids stopped, I was starving, ready for a late lunch and a nap. All of which happened.

Wednesday, we arrived back at Excel for a follow-up scan, which revealed the uptake was good. Then we met with Dr. Ali, who shared the specifics of my results, which were a little better than what was alluded to the previous day. In summary, all tiny tumors are either stable, reduced or no longer visible. They were also very happy about the 75% decrease in my tumor marker and that my kidney functions have actually improved, which, they said, is weird.

With the good news in our pockets, we stopped for some tacos on our way to the airport and were relaxing in our pajamas at home by dinner time.

Thursday, I did wake up with some nausea which slowed me down. I passed the time by watching this hilarious show called, ‘How I Met Your Mother’ (RSVPing late to that party), getting 15 minute bursts of work done and eventually ralling to do some laundry and go to the grocery store. Riveting events for you the reader, I’m sure.

By Friday, I had only a tinge of nausea.

Saturday was the worst – I slept 14 hours, but managed to be awake for a wild Saturday night of folding laundry and making dinner. Sometimes it’s about little wins, people.

Monday, I went for my Lanreotide injection at the hospital. My appointment was at 8am, which had me cringing. When I woke up at 6am, I decided I was going to do what I want. I rolled into the hospital at 10am and was out the door by 11am. Proof that appointment times are total bullshit. The rest of the day, I felt pretty meh, but forced myself vertical to met friends for  dinner and the Depeche Mode concert.

After Monday, I was ready to rock and roll on my regular schedule again. High five for a faster recovery this round.

From a financial standpoint, we had to pay for the second therapy upfront. Talking with the coordinators at Excel, they will hold on to the first and second payments until the treatment is complete and my account is settled. It could take up to six months for reimbursement, which is kind of lame, in my opinion, but whatever. I’m happy to be discussing a reimbursement situation.

This trip was short and that worked for me. We stayed at the Marriott Residence Inn (Westchase) again and will continue to since it’s so convenient. We used their shuttle and Lyft to get around town and back and forth to the airport. If you’re a NET patient interested in the finances, please let me know and I’d be happy to share my spreadsheet with you.

Also, I did not take short acting Octreotide injections prior to treatment this time. I didn’t feel the need and decided I wanted the tumors thirsty.

My next therapy is scheduled for November 2nd and we’re going to visit Austin the weekend before. Send me your recommendations, people!