PRRT Diary #3: Magic

My blog has been quiet lately. I’ve been working on other projects and enjoying fall, which I haven’t been able to do in years because of surgeries. The fun, productive days sailed by and before I could get my fill of pumpkin spice everything, it was time for my 3rd Peptide Receptor Radionuclide Therapy (PRRT).

My pre-tests revealed normal blood counts, a falling tumor marker and no need for short acting octreotide injections. Smiles all around. Therefore, the husband and I decided a weekend of fun was in order before a week of not-fun.

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IDK, but I hardly look like a cancer patient, no?

With a late arrival in Austin, followed by a long night of sleep, we ventured downtown Saturday morning for breakfast, a walk to the Texas State capitol and a city Duck Tour. Disclaimer: we’ve never done one of these cheesey tours and I can say with 200% certainty that we never will again. OMG – it was awful. First, it was so damn cold. Second, we didn’t learn anything about the city. Third, the guide’s jokes were not funny. Fourth, they gave everyone duck kazoos, including the kid behind me who has permanently impacted my ability to hear from my left ear. Lesson learned. Newly impaired hearing aside, afterwards, we hit up a local recommended food truck (Torchys) for tacos and they did not disappoint. In fact, I think they were the best I’ve ever had and I am serious AF about tacos. The rest of the day was spent walking around South Congress and 6th Street enjoying the Halloween costumes.

Sunday was warmer and a picture perfect fall day. We rented bikes and rode around the city for hours stopping only for an hour long kayak adventure on Lady Bird Lake. In the evening we ventured outside our comfort zone to a Haunted House, which was good fun.

The following morning we took the Megabus to Houston – queue the jeers and boos.

Early Tuesday I reported to Excel Diagnostics for a full poking (port access), scanning (MRI, PET and Chest CT) and starvation test (I think exit pizza should be legally mandated if you’re forced to fast for anything over 4 hours). I even had to return Wednesday morning for a renal test.

I have to be honest – I was kind of a basket case. These tests were more lengthy than usual because my doctors thought we should do a halfway check-in. While I waited for the results my mind filled with all the worst case scenarios. Fortunately, my husband is very good at talking me off the ledge. But still, scanxiety is a real, tangible thing, people.

Wednesday afternoon we returned for the results. And with much excitement, my doctors shared that I’m tracking at 20% shrinkage. BUT, I re-did their math and it’s actually 22%, so I’m taking the Goddamn extra 2%.

Let me emphasize something, because I understand why some of you might not be impressed with 22% at the half way point – THIS IS HUGE. Medicine has never done anything but stabilize me in the past. Surgery has always been most effective on me, so it feels incredible to have found something that works and doesn’t result in cutting me open.

Later Wednesday night, the Houston Astros won the World Series, so it is with 300% certainty that I say there was some special magic floating around Houston and I am so grateful to have received some of it.

But, the celebration was fizzled because Thursday I still had to be infused and thank God some of that magic from Wednesday carried over because, finally, I avoided nausea and vomiting from the amino acids they give me to protect my kidneys.

Friday, I was back at Excel for a quick scan to reveal the medicine was in place and we headed home to Nashville that afternoon.

The only negative thing that came out of Houston this visit was a cold my husband and I both picked up during our travels. Fortunately, it wasn’t too bad. We pretty much spent the weekend watching Netflix on the couch, ordering take-out, which is probably what we would’ve done anyway.

Once Monday rolled around, we were both feeling better and the only agenda item for the day was a trip to Vanderbilt University Medical Center for my Lanreotide. I’ll admit, I was pretty tired on Monday, but in a psychic stroke of genius I planned my appointment for 6pm, which allowed me to avoid traffic, wait times and rising early, which is no bueno for me. Each day I woke up with more energy and by Thursday, I was fully back to the land of the living. So much that Friday, I went hang gliding for World NETs Day. Read about that here.

Even better, I am officially free from cancer treatment until the 2nd week of January and we are off for fun in the sun and a European holiday.

Ciao!

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.