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!