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!

 

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Cancer Book Club & Other Favorite Reads

One of my New Year’s resolutions was to break my technology addiction and my first course of action was banning devices from my bedroom. Instead of watching something on my iPad as I fall asleep, I replaced the activity with reading (real books) and have never felt more well rested, energetic and sharp. It’s made me realized how much I’ve missed reading like I did when I was younger. Plus, I’ve read over 45 books this year!

Naturally, some of these books are about cancer.  They consist of either memoirs or “how-to’s” on surviving. Below you’ll find a random, incomplete list my favorites to-date to serve as suggestions if you’re looking for inspiration.

rufusDie Young With Me by Rob Rufus. Read this if you’re a young adult impacted by cancer, lover of punk music and/or don’t subscribe to the kumbaya-ness that often accompanies illness. Personally, I’m a little partial to this story since Rufus and I both live in Nashville and are cancer surviving writers, who aren’t afraid of a few f-bombs.

When Breath Becomes Air by Paul Kalanthi. It’s sad, it’s profound, but most of all, it’s beautifully written. Read my complete review here.

Dying to Be Me by Anita Moorjani. Read this book if you believe in miracles or want to believe in miracles by a first hand experience.

radzwillWhat Remains by Carole Radzwill. Another weeper, but the prose is incredible. I found this memoir of loss an example of what our caregivers endure along our side because they are often the forgotten trauma survivors.

Crazy Sexy Cancer by Kris Carr. Read this if you are a newly diagnosed woman and/or interested in means of healing through food, alternative treatments, etc. Better yet, watch the documentary or an episode of Carr on Super Soul Sunday.  

41b5V0a3aFL._SX326_BO1,204,203,200_I Have Cancer and Never Felt Better by Tracy Krulik. Check this out if you’re a fellow pNET, especially if you’re about to go into surgery. I devoured this before my distal pancreatomy and it provided me with many important questions I would have not otherwise asked.

Now, this all being said, I have set up some rules for cancer reading, which may not always be a relaxing escape.

  1. Memoirs only before bed. Rule 1a – the person has to be alive. Rule 1b – it can’t be a section where the subject is talking about a similar trauma (chemo, nausea, etc.) Bringing those feelings and memories to the surface have no place in my bedroom.
  2. No cancer reads on vacation. Time away is officially a cancer-free zone in my family.

Don’t want to read about cancer? Yeah, me neither. Here are a few of my favorites:

The Namesake by Jhumpa Lahiri. This is my all-time favorite book, ever. The prose is out of this world and tells the story of an immigrant family’s struggle of retaining their culture versus assimilating to America. If you like this book, Lahiri’s Interpreter of Maladies is also worth the time. It was Lahiri’s first book and won the Pulitzer Prize if you needed any further nudging. There’s also a movie based on The Namesake, which, for the first time ever, does justice to the book.

The Moth Presents all These Wonders: True Stories About Facing the Unknown. Read my complete review here. Okay, so there are a few stories about cancer, but they are happy ones.

patchettCommonwealth by Ann Patchett. God, I love Ann Patchett. She lives in Nashville and owns a bookstore I frequent. Between you and I, I sometimes hang out there just to catch a glimpse of her. I wouldn’t be surprised if she thinks I’m a stalker. I just kind of want to soak up some of her genius by breathing the same air.

Hillbilly Elegy by J.D. Vance. An interesting memoir of escaping and growing up in poor Appalachia.

Behold the Dreamers by Imbolo Mbue. A novel an African immigrant family trying to make it in New York City. While this story is fiction, I think it portrays the sacrifices and lengths that foreigners will go to to achieve the American Dream.

If you’re looking for more suggestions, check out my Goodread’s list, which has the last few years of books with ratings.

Also, my “to-read” list is primarily comprised of recommendations from others, so if you have a book that’s touched your life, please share by commenting below.

Up next in the cancer category is Radical Remission by Kelly Turner, Everyday I Fight by Stewart Scott, A Walk with Purpose by Michael Becker and The Art of Not Giving a Fuck by Sarah Knight.

Happy Reading!

All is Unfair in Cancer and Hurricanes

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As featured on curetoday.com

Peptide Receptor Radionuclide Therapy (PRRT) is an exciting treatment for Neuroendocrine Tumors (NETs). While considered investigational because of its pending status at the FDA, Europe has performed this therapy with an 80% success rate for over a decade.

When a May Gallium-68 scan found microscopic tumors, my specialist recommended I pursue this treatment.  It took a lot of coordinating, but I was able to access this therapy at a facility in Houston under Texas’s Right to Try law, a preferred option compared to traveling to Europe.

My first treatment went great, leaving me virtually symptom free and slashing my blood tumor marker a whopping 75%. Investigational therapies are not always covered by insurance, so it was also pretty exciting when I found my insurance company paid for the treatment.

Life was looking like sunshine and kittens, so my husband and I decided the next trip to Houston should not be completely about cancer. So, we booked a romantic beach weekend in Galveston before my next therapy, scheduled for August 31st.

Cancer has already taught me to quickly develop back-up plans, so when the Houston clinic called to explain there could be a delay due to the approaching hurricane, I jumped into action, developing a Plan B and Plan C. Little did I know after all the events transpired, I’d end up on Plan F.

Plan A – Fly from Nashville to Houston to enjoy a weekend on the beach in Galveston before returning to Houston for treatment.

Plan B – Take the scheduled flight to Houston, drive to Dallas for the weekend. Return to Houston when the storm passes.

Plan C – Drive from Nashville, stopping to visit Memphis, Little Rock and Dallas, where we would wait for the green light.

Plan D – Reschedule therapy until September 12th, the one week my husband had an important commitment.

Plan E – Get my older brother lined up to take my husband’s place by booking him a flight out of Tampa September 10th. Enter Hurricane Irma.

Plan F – Break my husband’s commitment so he can come with me to Houston and spend the next few days calling airlines, hotels, etc. to reschedule…yet again.

While all of this was unfolding, I could rationalize that it would have been pointless for me to try to enter Houston during the chaos or for my brother to leave his family in the midst of a disaster, but still, it was stressful. Cancer already creates feelings of powerlessness, fear and uncertainty. Piling on more seems unfair. Before I spun into a ball of anxiety, I stopped and gave myself an attitude and perspective adjustment. I am lucky my situation is not critical because there were/are others impacted by cancer who had/will have urgent situations in the midst of these disasters. Rescheduling is a minor inconvenience when a hurricane is barreling toward your home.

As I rationalized and calm myself, I realized the similarities between hurricanes and cancer. Both are natural disasters, with human contributing factors. Both are completely unfair. Both can be devastating by taking everything you have. Both have the potential to create resilience. Both can bring out the best in people. Both create perspective because when we or our loved ones are in danger, the stresses of daily life don’t seem so stressful. And both are reminders that there is so much we can not control.

“If plan A doesn’t work, the alphabet has 25 more letters – 204 if you’re in Japan.” – Claire Cook

Read my others articles with Cure.