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!

 

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. 

 

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