Lutathera #2, 1 year into chapter 2

“Worrying is like a rocking chair, it gives you something to do but it doesn’t get you anywhere.”  -Van Wilder

So I've mentioned a few times about God's timing, and I just have to mention it again. On December 22, a couple hours after the family arrived for our Sandbridge Christmas,  we got a call from Rylie’s school that she had tested positive for COVID, and I (as well as Eric) subsequently also tested positive.  I called Mayo right away to let them know.  I glanced at the calendar and realized that I was still over two weeks out from next treatment so I “knew” it would not interfere. About an hour later the 507 area code showed up on my phone.  “Good afternoon Mrs. Nelson”, it was the oncology office. “We got your message, and Mayo actually requires 21 days from a positive test before treatment.”  ENTER PANIC! “Good news is that your treatment is scheduled for exactly 22 days from today, Merry Christmas!” WOW!!! What are the odds, right! Yeah it sucked to have COVID over Christmas but how great was that timing. Had we waited even 1 day to get tested the treatment could have been pushed back two weeks. 

Why 2 weeks, because the therapy has to be given within X amount of hours of receiving it from the manufacturer because it loses potency over the course of hours past administration time.  And it takes two weeks to order, process, make, and ship the medication. So if the process was already started they would have had to discard the treatment.  Additionally, the clinic had already been working with Noartis to have the medication ready on time without a 2022 Insurance benefits denial. Which in and of itself is another story.

SO YEAH! No delay in treatment. While on the phone with them, they informed me that they would be doing remote monitoring over the three weeks prior to treatment. The next day a huge box showed up on my doorstep, although I had wished it was some amazing Christmas gift from Mayo, it was the monitoring system and included a tablet, thermometer, pulse oximeter, blood pressure machine, and a scale. Just what every girl dreams of over the holidays, a scale. Twice a day, I had to answer a symptom screening questionnaire and record my vital signs. If there was any change I would get a call, if I missed a check in, I would get a call, it was actually pretty annoying and comforting all at the same time. (Let me tell you by day 14 I was over it…. Every morning at 8am the tablet would say “Good Morning it is now time to record your vital signs.” )

On Christmas eve my local oncologist called to inform me that he had spoken to Mayo and they all thought it would be a good idea if I went to the ER and got the monoclonal antibody therapy to avoid any Covid complications. Before heading over there I had Dr Franzman verify that it did not contain Polysorabte 80. He spoke to the hospital pharmacist and assured me that one of the treatments did and one was preservative free-  So off I went to the ER. It did not take them long to get me out of the waiting room once they realized I was a COVID-19 positive radioactive Cancer patient! LOL, but just because they moved me out of the waiting room did not mean I got seen faster. I was put in a holding “room” or as I like to say, a closet! That's right, alone in a closet on Christmas eve! Good Times. It was the perfect scenario for an anxiety attack. 5-6 hours later, I left untreated because as it turns out ALL COVID treatment options contain Polysorbate 80. I was stable, had a “clear” chest X-ray and no fever.  They offered plasma therapy but after weighing risks vs benefits and not wanting to stay for a 24 hour monitoring period post infusion, I decided to just go home.    

Christmas and New Years came and went and I survived. Not without a lot of PTSD, but nonetheless, I survived. A combination of seasonal body memories, Covid, and the anticipation of the second treatment had me very anxious. I cried a lot the weeks leading up to our trip. The Fear was paralyzing, the anxiety was suffocating and the worrying had me sleepless. Over the course of ten days- a day did not go by without waking up in panic, and a day didn’t go by without shedding a tear. It’s amazing how you can have so much faith and when just the slightest fear or doubt creeps in - all of a sudden you have to search deep in your soul to find that faith. Does that make you human or an imposter? I have to remind myself: Faith over Fear!

Fortunately, overall, everything went well this time around. There was no airport vomiting and my sodium handled the treatment with just a small hyponatremic episode. The days prior to treatment consisted of routine labs (not including a covid test this time since I had covid within 90 days) and appointments with nuclear medicine, oncology and my new interventional oncologist, Dr Stacy. She is great, and has played a big role in alternative/complementary therapies as well as supplements and cannabis. I couldn't believe we spent so much time talking about getting high! Kidding, but we did spend a lot of time talking about the benefits of THC and CBD- super interesting.

Dr. Dimou remains optimistic and hopeful- two traits every oncologist should possess. He was concerned about a new symptom of spinal nerve pain I had been experiencing since getting Covid, so he ordered an MRI of my cervical spine to rule out MS secondary to immunotherapy which was scheduled for the day after Lutathera. My sodium had been stable for the 8.5 weeks since treatment, and I was pain free for about 7.5 weeks- all positive signs. 

Lutathera went well, as I said, way better than the first time. However, despite having a great plan in place there were some hiccups with my sodium and when, or even if, to admit me. My levels dropped about 7- 8 points in just over 24 hours but only 4 points after treatment and I was not symptomatic— because I was medicated differently and had great control of my nausea. There was a break in the communication line somewhere and the endocrinology fellow was being difficult, which added a lot of unnecessary stress. Luckily, Dr Natt was checking on me from the airport in Europe and between her and Dr. Dimou, I was ultimately admitted for 24 hour observation. I remained asymptomatic (thank God), sodium rebounded up to 136 and I was discharged after my MRI. It was now Friday afternoon and it had been a very long 48 hours between appointments, therapy, and hospital admission. Immediately following discharge, I had my Sandostatin injection- by 4pm I was ready to get back to the hotel and relax. I continued to remain well over the weekend and we were able to return home Monday as planned. 

My MRI results were reviewed with Dr Dimou over the phone and there appears to be some questionable demyelination at C7. The radiologist is unable to clearly decipher the significance of the findings because of “motion”- apparently I swallow a lot. At this point in time all this means is that Dr Dimou will be investigating this further when we go back in March. He has spoken to a neurologist and we will be getting more MRIs (of brain & Thoracic spine) as well as a possible spinal tap next month. The electrical nerve pains have subsided which is really positive news. Since returning home, I have been able to decrease my NaCl tablets down from 1 gram three times a day to 1 gram twice a day and my sodium remains around 136. The pain is starting to go away again, but I have some residual pain from what returned prior to the second treatment. 

Although I have gotten the green light to hit Mary Jane, I have not yet…. Maybe soon. In the mean time I am taking turkey tail mushroom capsules (watch fantastic fungi on Netflix), milk thistle (for detox) and something else for immune system…. To keep my platelets up. I wish I could get all I need from diet but I just can’t right now. I have stopped eating meat in August or September (although I cheated once or twice) and my hands are improved. I am still seeing my therapist who recently explained why writing this blog is helpful to me. (Im going to screw up explaining this but it’s something about taking the experience and moving it from left brain to right brain and then through typing it bringing it to prefrontal cortex where it can be filled away. I always feel better after I take the time to put my feelings and experience into words, now I know why!) Today I started back at acupuncture and have finally had energy to get back in the pool! I am not crying as much as I was in January but as we approach the end of this week and next week I feel the anxiety creeping in again. February 4, 2021 is when my sodium dropped again and we knew the cancer had returned. February 7 (the worst day of my life) is when I had to tell the kids. And For two years in a row, 364 days apart Eric and I were flying out to Mayo (February 12, 2020 and February 11, 2021) because of this cancer. It’s the anticipation is another round of PTSD about to implode. It’s just a lot. I try to think of all the things worrying can accomplish- and I always come up with the same answer- nothing! So why can’t I stop worrying? I am choosing to focus on all that we did this year and appreciate and remember the importance of living despite being told you won’t. I wasn’t given much hope at first when the cancer came back, it was actually the exact opposite. I managed to do a lot, including running a half marathon, watching D and Rylie do the things they love, visit with family, hang with friends, watch sun rises and sunsets, and grow closer to God. This year and I have treasured every moment.

**** side note, I should add that I will never forget something else from that week last year, in my daily prayer book On Feb 8, the verse Matthew 17:20, gave me Great hope In the hospital and I refer back to it all the time!

Ok, now for that good news I said stay tuned for in my last official post! By this time I know anyone reading this already knows, but for my purpose of journaling I want to include some Good “C” words (I have a previous post about all the bad “C” words). Dylan has made a decision for college! He will be serving our Country while attending the US Coast Guard Academy in Connecticut and has committed to play collegiate baseball. He has worked very hard and he is super excited. Today was signing day at his High School! 

Rylie doesn’t have any C words but she does have her permit now!!! She needs a lot of practice driving and we are to the point of having to draw stars to see he will take her. Even Dylan had to see for himself just how bed of a driver she is. He thought we were exaggerating…we were not! Please pray for us to be safe while she learns how to drive. Seriously.

National Signing Day at Kellam HS

Last Kellam HS Swim meet and Senior Night