Hope

• “But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” – Isaiah 40:31

Humbled, honored, most certainly blessed, I am not sure which word best describes how I have felt today. The pure love and support that has been pouring in is extraordinary. So many people have been praying not only for me but for my family, friends and medical team. I can't even find words powerful enough to express my gratitude. 

Yesterday was a very long day. Once we got settled at the hotel we contact Dr Dimous office and let them know I had arrived. He already had orders in my chart to get labs and schedule an apt ASAP. I called at 2, had labs at 2:20 and was scheduled to see him at 4:00 or “whenever I Was done with Dr Olivier.” Things were moving quickly already. 

 It is nice to see the halls of the clinic bustling with people again and to see so many of the little shops that survived from being closed so long from COVID. I was able to “surprise” my friend Lori (the one I made last year from the cancer store) We had kept in touch after Eric and I got home this spring and chatted over text not long ago. It was a very special moment when she came out of her office and saw my face. She knew  in an instant, that me being there meant something was not right. She immediately embraced me and we both started crying. Our visit was cut short because of my appointment with Radiology oncology. I have sense been in touch with her and she is having Eric and I over for dinner tomorrow night! ——Lori is also a dog breeder and has some pups at home, Rylie is going to freak out when she sees the 6 day old puppies I am going to cuddle with! I am so lucky to have met her and to have a support system right here in Rochester. 

Dr Olivier (insert deep peaceful breath) is one of the kindest souls I have encountered. I have always felt at ease when I talk to him and he almost always provides reassurance and comfort. Yesterday was no exception. Have you ever been in a position when you have held your shit together as best you could and then you see someone and it all just surfaces at once? Well, thats what happened with Dr Olivier. Full on ugly, hyperventilating, mask suffocating, snot flowing break down. Almost embarrasses me to type that! Those prayers Everyone has been praying, for my medical team, they certainly reached him. As he watched my ugly meltdown he got up, walked to the sink and washed his hands. As he walked back toward me he said, “I washed my hands because I am going to come hold yours” and he did. As he held and squeezed my hands he looked me deep in the eye and told me they were going to take care of me. He had been in contact with radiology specialists and my team of doctors at Mayo and assured me they have a game plan! He spent close to an hour discussing how there are treatment options that the team has come up with. The important thing is how we approach these options and use them slowly and wisely to get maximum time and benefit from them. He said this is exactly the steps he would take if I were his daughter, sister or wife. He provided great hope and with great hope comes peace…… something I Was desperate for.  More was explained in depth which I will try my best to summarize at the end. 

After we finished with Dr Olivier we went directly to oncology to meet with Dimou. This visit was also over an hour long. Its terrifying to hear the words metastatic cancer be used in reference to your own health. When you hear a metastatic small cell carcinoma (SCC) that metastasized to the bones you expect to see an old smoker sitting in the room, not a 42 year old runner. Not me! But I Guess we all say that at some point- “that wouldn't be me”  😌 

Dr Dimou, as with everyone else, has never seen or read of a cancer situation/diagnosis like mine. He repeated often during the visit how there is just no information out there so they're doing their best with what pathology and tumor analysis has provided. They know it is small cell carcinoma but are suspicious to whether its behavior is actually following that of SCC of the lung or if its origination from the Thymus makes it behave differently. And that is where the hope comes in!  They attacked it - balls to the wall, no holds barred full on Surgery, radiation, chemo initially and it still returned in an unlikely fashion….. so they have opted to think outside the box. And this is where prayers are being heard! Praise God! 

Bear with me as I try and explain the plan and/or theory….. We discussed not only our initial plan of attack but briefly touched on the fact that there are others that can follow. What we HAVE STARTED is an injection called Sandostatin. The hope is that the medication identifies hormone producing cancer cells and stops them in their tracks (calls off the party) and gets them to stop producing the ADH hormone. Additionally it should stop the growth and replication of these lesions. The fact that they produce ADH and cause my sodium to drop is a blessing so we will know if the  medication is working if my sodium increases. That is where it can get complicated. For lack of better words, I am pretty much at equal risk of my sodium killing me as the cancer 😬 so we have to be careful on how we wean off sodium treatment to verify efficacy of injection. It's all really complicated. I have an appointment Monday with endocrinology and will be seeing the wonderful Dr Natt again!! She will be the one that helps monitor and control the sodium part of all of this.

If successful, this injection may have the potential to work for some years. Although none of the options available at this point in time will cure me, we hope for the possibility of successful long(er) term treatment. The intent is to try and treat this systemically and do so in a way so we can play “the long game” giving me the best chance to hopefully be able to live with this and fight it off as best and long as possible.  They are hopeful and optimistic that with the number of options they are considering it gives us a good chance to keep on fighting. 

I received the first injection this afternoon with no side effects. Which could be good or bad- but no sense wasting energy reading into that. We should be able to begin seeing if it worked within two weeks. Until then we continue to pray. Hard.

PS  We Certainly do not intend on staying 40 days again 😉 but To spare any mad rush back to MN for sodium control or med change We will be staying in Rochester until we know the injection is working.