Thursday afternoon I was released from the hospital and I was able to resume my radiation treatment that very same day. The next few days were spent in a hibernation type state. I was extremely fatigued which the doctor explained to me was the result of coming off the steroid I had been on along with resuming my treatments. Sunday I finally emerged from my mostly sleeping state and spent a wonderful day with my family.
But I have so much more to tell about what transpired while I was in the hospital. In the Hospital Update blog I mentioned how my doctors were exploring an outside the box treatment for my case. I am happy to report that as we continue exploring, we are also now in action. The treatment is a shot administered every three months intramuscularly and it is currently being used by endocrinologist to treat pituitary tumors. It has also been used to treat glomus tumors (the type of tumor I am believed to have) in several cases.
On Wednesday a team of endocrinologist came to visit me at the hospital. They were armed with two medical articles that showed success in stopping tumor growth with this treatment in the case of two patients. It is extremely difficult to find patients with the type of tumor that I have so the endo team was clearly excited about the possibility that I could be success number three. They were so excited that they had already ordered the treatment to be delivered to the hospital for the following day and if I consented I would be receiving this injection as soon as it arrived at the hospital.
My family and I were not as eager to consent. We had many questions and concerns about lack of data. We wanted to speak with my team of doctors, with endocrinologists that we know and trust, and of course with my radiation oncologist. After speaking with all appropriate parties we learned many things that helped make our decision a no-brainer. First, the medication is commonly used and FDA approved. It is experimental in treating my type of tumor but it is by no means an experimental treatment. In fact, I had already had the medication injected into me when I did a test to better examine the properties of my tumor. The side-effects are GI related. I might have to endure some nausea and stomach aches but I could achieve stoppage of tumor growth or even shrinkage in exchange. Seems like more than a fair trade-off. My radiation oncologist said we could do this in conjunction with my radiation treatment and he told us that he had two patients that went to Italy for this medication and it shrank both of their tumors. Now that was music to our ears! We asked how would we know what worked - the radiation or the medication. The response from all the doctors including the endo team was, "Who cares." We had to give it to them. We really don't care what works at the end, as long as something does.
Wednesday night my usual night nurse came to check in with me. About an hour later, another nurse, who happens to be a nun enters my room. She introduces herself and tells me that she is going to be my nurse for the evening. I ask her about the other nurse and she just smiles and tells me it's going to be her tonight. As she leaves the room I consider what it's like to be a nun and a nurse at the same time. It's not something that you can hide and I'm sure that different patients react to this in different ways. I felt comforted. Around 3am my nurse enters the room and tells me the medication has arrived and she's going to be administering it. To be completely honest I had been looking forward to a shot free, blood drawing free night. I tensed a bit because I had no prior relationship with my new nurse. Did she know what a chicken I was? It was dark and the middle of the night. Had she seen the bruises all over me from the needles? As she's asking me to lay on my side I decide to relax and to trust God; after all this is a nun administering a treatment which might shrink my tumor. This is a nun administering an injection that could save my quality of life. And then as I'm in the middle of a whole gratitude rant that I was giving God and mentally high-fiving 'the big guy' about the irony of my nun nurse I feel her gently snap me out of it. I turn in disbelief and say, "Sister, you did it?" When she responds that it's all done I wanted to spring from my bed and hug her. I didn't feel a thing! I was still waiting for her to do it! I then tell her that she is amazing and that I had not felt a thing. She seemed pretty surprised herself but she was beaming that I was so happy with her. After she left my room I did not see her again but she will be fondly remembered as my nurse nun who administered the first of what could be the cure we've all been praying for.
My friends, the prayers are working. I am in touch with God’s constant presence and immense love for me during this time. I will write a full blog entry on this topic but for now I’ll share this. My relationship with God has been evolving during this time. As many of you know I have a wonderful father and we have a great relationship. I see my relationship with God much like I do my relationship with my own father. It is extremely loving, always present, light-hearted, and fun. I never thought I would describe my relationship with God as “fun.” After my treatment injection I fell asleep laughing and conversing with God. My thoughts were something like this: “So much for your super mysterious ways huh…I mean the whole blood clot, yeah I didn’t see that one coming, that was pretty genius; I gotta hand it to you – brilliant curve ball! But a nurse nun!? And I thought subtlety was one of your strong suits? Thanks for that. Another one for the history books…Good one! Good one!”