Post Treatment Update

"Theres a difference between living and living well" George Straight

I'm sure the news that about 24 hours after my last post I ended up in the hospital is not shocking. Ugh. What a nightmare. Bare with me as I try to paint you the picture of what it’s like to be radioactive while hyponatremic. As stated in my post immediately following the infusion, I did not feel great going into the treatment and certainly did not feel well during the treatment so I was not surprised that I continued to feel poorly in the days following. However, I was uncertain if it was the treatment or my sodium that was making me so miserable until it was too late. The nausea worsened, the dry heaving started and the headache was unbearable. I was able to get a sodium check that morning and had dropped from 134-131 so i knew I was trending down. As the day went on, Eric knew that something was not right. The nausea was unresolved with medication and instead of just dry heaving I was actually throwing up…. other than getting me to the ER, there was nothing he could do. We put a message into Dr. Natt but the situation was escalating too rapidly to wait for a return call.

The ER visit was terrible. Given the complexity of the situation, treating me was not cut and dry and Eric and I were getting push back on what we knew needed to be done. In the eyes of the ER medical staff we were know it alls, declining treatment they wanted to provide.

Brianna was most certainly missed (the NP at home that helps with my admissions and knows everything there is to know about my diagnosis). So many things needed to be explained, electronic medical records just do not give enough explanation. Naturally they wanted to start fluids, but that would have made me worse…..Eric practically ended up being the “ordering provider” dictating what needed to be done and who needed to be consulted. 

What made the situation even more difficult was that Eric could not hold my hand, help me while throwing up, or get anywhere near me while I was vomiting. I was radioactive and my vomit contained radioactive material. We even had to have the nurses call Hazmat to figure out what to do with contaminated basins. Amidst all the drama, Dr Natt had received our messages and called the ER- between her call and Eric’s “orders”, we eventually got Endocrinology on board and things started to settle down. Turned out I had some fluid on my brain (cerebral edema) and that was causing the massive headache, and My sodium had dropped two more points. We do not know then, nor do we know now, whether that caused the vomiting or the vomiting and SIADH caused the swelling. There are still a lot of unknowns about the entire situation, and a great deal of speculations, but long story short- I did stabilize with one extra dose of Tolvaptan and in 24 hours my cerebral edema was resolved. We are hopefull that the episode could be an immediate effect of Lutathera working.

While hospitalized, my team all showed up. The cheerleader (Dr. Olivier) came by for a social visit.....Seriously. LOL. He came over to the hospital and sat on my bed for about 30 minutes and we just chatted about life and had some really great laughs. I learned that his downfall is picking out AirBNB's. Dr Natt called multiple times to check in and make sure we did not need anything. Dr. Dimou even came up to personally check on me. He had a very different look on his face when he was talking with us, you could see he felt terrible that I had ended up in the hospital. He  said something neither Eric nor I will ever forget, it was very intentional and heartfelt, “We have to do better for you next time.” (insert right hand placed on my heart)

I was able to be discharged two days later…...on a Friday afternoon! So, we had to extend our stay until Tuesday so that we could have all our follow up appointments on Monday. We had a great appointment with Dr Natt and established a well laid out plan for the next treatment which is scheduled for January 13.  Dr Natt will be out of the country for that visit so she has met with the endocrinologist and fellow who will be on call the week I am there. She does not want to leave any stone unturned. We have a very clear care plan in place from the day I arrive in MN until two days after treatment. Now we just have to pray that Novartis continues to pay for the treatment. It was approved for THE year not A year, so we are back to going through the process of free drug approval. Additionally, we are going at it with insurance as they have now decided to no longer cover Tolvaptan.

Five days after returning home it was time to head to Tampa for my appointment at Moffitt Cancer Center with Dr Strosberg- the Lutathera “expert”. All I have to say about that is we had a great visit with my sister and her family and Eric and I feel evermore confident that we have the BEST possible care team at Mayo. 

Our Thanksgiving was just that- a day of giving thanks for all things good! We enjoyed the day out on the water with the Keyser crew. We saw Dolphins, Sea Turtles, Manattes and a beautiful sunset. And now it’s December, again. Again, I wonder where did the year go? It is a bag of mixed emotions to think that all this shit started two years ago. It really is a difficult thing to explain. Part of me is so relieved I've made it through so much in two years and still going strong and a part of me is scared to death that whatever “timeline” I may have is now two years shorter.I don't care how much faith or hope you have, this is just something that I can not control.I have been showered with cards from so many people over the last month. Thank you to everyone who continues to pray for my family and I. This has been a long road and to see that so many are still standing by me is amazing. I have been utilizing breathing techniques and prayer to get me through rough moments and both have been beneficial.  I continue to pray for the strength and ability to keep living and not just staying alive. 

Also, stay tuned for some really exciting, much needed, good news coming up in the next update and I hope everyone has a super Christmas!

 

Lutathera #1

 Nothing is impossible, the word itself says “I’m Possible” Audrey Hepburn

After a month of fighting with insurance and pleading with Novartis, Lutathera was started yesterday. It was a real win to be able to get this medication for free and to have insurance pay for all expenses associated with it. It turns out this is something that neither Duke nor Mayo has ever had happen. Amidst the fighting, Eric and I decided it would be best to exhaust every possible option.Before hearing from Novartis we had scheduled an appointment with a doctor at Duke who has a lot of experience with the treatment. About 2 weeks ago we drove down to NC and met with the doctor. His initial reaction to meeting us was “what do you think I can do, you are coming from MAYO” Ha! I think he was flattered that we came from Mayo to talk to him. He specializes in GI tumors so did not know much about Thymic Cancer but really, who does?? He was even more shocked that I was able to get the medication covered by the drug company, stating that he has never been able to do that.  Anyway, he was helpful, optimistic and reviewed a number of different options all of which lined up with Dr Dimous. And he did agree that Lutathera may be beneficial and is worth a shot- so our mission was completed. We wanted to get another research education facility to recommend the med and he did- we can put that in our back pocket for now use it if insurance causes any more problems. Additionally, I was able to find the physician who studied Lutaherea during phase three drug study. He practices at Moffitt Cancer Center in Tampa, FL. I reached out to his team who was very interested in my case and had my sister follow that phone call up with a visit to his office. YUP that's right, she drove to Tampa and delivered some medical records to his staff. After a little ‘boo hooing’ she convinced the nurse to get the records to Dr Strosburg. When they called me back, you would not believe the first available appointment he had…….November 24, the day before Thanksgiving. If it were anywhere else this would seem impossible but instead- it gave us a reason to go to my sisters for the Holiday. I can not wait to get his thoughts on the medication and nuclear medicine treatments. 

Eric and I arrived in Minnesota Sunday evening. It was an eventful trip this time, with my sodium dropping mid flight. I ended up doing the dry heaving nastiness in the middle of the Atlanta airport. And as Murphys law would have it, we ended up checking our bags at the gate in Norfolk to go directly to Rochester so I did not have my lasix or anti nausea with me. In order to try and get some of the fluid off I did what I had too—- look like a crack addict ——and nibble off a little piece of an extra tolvaptan pill and double up on NaCl tablets, and down some salty french fries (which I will admit was a bonus!) I started feeling better and releasing fluid just before having to board the next flight. Monday was Prep Day. The alarm went off real early after a long day of travel. Appointments started at 7:15 with a covid test, then CT of chest abdomen and pelvis at 7:30, blood work at 10 and later that afternoon was medical oncology consult and lastly Nuclear medicine consult. 

First up, the results. Well I'm not pregnant and I don't have Covid. SO that's a start. As every scan, this one does show some progression and some improvement. The newest tumor (and the reason we ordered the CT) is in my left rib and explains the pain I've had for 2 weeks. I suggested we just take the rib out, I mean after all God took one of Adam's ribs! I did get Dr Dimou to laugh a little at that, but regretfully he rejected my proposal. All in all he feels we are in a much better place than we were in March and April and was excited that we would be starting Lutathera! We decided to reinitiate Sandostatin, the very first medication used to help with tumor activity. Studies have shown increased efficacy of Lutathera when used in combination with Sandostatin. This will be given IM every month we are not in Many and the day after treatment in the months we are at Mayo. The “first” one will be today at 3pm. Pending Insurance approval. What they once covered in February without any authorization is now being denied!!! Here we go again. At the end of the appointment Dr Dimou made me laugh when he sounded as if he was about to start singing imagine dragons “radioactive”! It was very entertaining.

The consultation with Nuc Med was interesting to say the least. I had shared a link on a prior post (September 23) that talks about how the medication works and Monkia also shared it on facebook, so I won't bore you with the details. Monday night we met Lori and Jason out for dinner. We had a great time, some good laughs but we missed seeing her amazing kiddos. 

Tuesday was showtime! YIKES. The treatment took place in a hospital room and for starters the bathroom was lined with plastic and resembled a crime scene. So bizzare. Eric was able to stay with me during the prep (which was shortened because I was unable to get one of the nausea meds because of my allergy) and for the first thirty minutes of amino acid infusion and then had to leave when the radiative box entered the room and was not allowed back until completion of treatment. There was an episode of vomiting following the initiation of Lutathera but that subsided after some IV compazine and the rest is a blur since that knocked me on my ass and I slept almost the rest of the time. I say almost because I was able to order free meals during treatment so, to save a buck on meals later, I ordered hospital food for breakfast and lunch. 😂. I finished up around 3 with a sodium check which was, to no surprise because of fluids, low at 134. 

Before we even returned to the room, the strict precautions were- well-sad. After a very draining day I walked out of treatment and was not even able to hug Eric. It was official, I was radioactive and even had a membership card to prove it. Poor Eric had to sleep on the couch and will remain there for the next two nights. We needed a bigger room so we could maintain distance while he worked all day and I recovered, but none of the larger rooms came with double beds. We have to keep our toiletries, soaps, towels, drinks, food and clothes seperated. I have to rinse the shower out after every shower, let the water run after every hand wash, and double flush with the lid closed after using the toilet. As most women in their 40s, sneezing and not wetting myself has been a challenge but so far so good. If that happens there are a whole other level of precautions. If I get blood or vomit on any article of clothing, bedding or towels it has to be sealed in a bag for 60 days before it can be thrown away- yes thrown away, not even washed. The rules are crazy. After this evening I can be closer to Eric when we eat or pass by each other but must remain separated for sleeping and prolonged periods of time. We can not fly home until Friday so that I do not expose anyone at the airport gates or anyone I sit close to with radiation. I'm thinking it's time Eric gets his pilot licenses- that would simplify everything. 😦Kidding. After Friday the precautions loosen up and by day 7 I can resume normalcy. The doctor did say that I can swim on Monday which is safe for everyone unless I pee in the pool. HA! I'm looking forward to that. Its been one thing after another and with tumors in both hips and sacrum my goal of really getting back to running has been put on hold. Let me be clear, it has NOT BEEN CANCELLED. I will get back out there one day but in the meantime I just have to make do. 

My sister did post on FB about the prayer to Carlo Acutis, I will share below. 

Also, my friend Erica was able to get in touch with Franklin Grahams team. He is the son of Billy Graham and is here at Mayo right now. She asked his team to please pray for me and would you believe it, they responded. I will share that communication below as well. Again, thank you for every single prayer, thought, blessing, card, message, everything. Things are going to improve, I just know it. Miracles are going to happen. Love to all. 

https://www.padrepiodapietrelcina.com/en/prayer-carlo-acutis-ask-miracle-intercession/

From my friend Erica to Franklin Graham 

Hi! I know this is a bold

request. But, my dear friend

is at Mayo Clinic in the fight

of her life right now with a

rare neuroendocrine cancer.

I know Mr. Graham is there

recovering. If your team can

speak her name and pray

for her, I would be so

indebted. Your work is

amazing and I feel like I had

to ask.

She is a nurse practitioner

herself, a lover of Jesus,

and a mom of two beautiful

kids.

Please pray over her name.

Kate Scerbo Nelson

Thank you for spreading the

love of Christ.

His teams response……. 

Thank you for sharing this

with us. We are so sorry to

hear about this situation.

We are praying right now for

your friend at the Mayo

Clinic. We are praying for

Kate's health and that

God's comfort would

surround her.

God bless you both.