This past week we posted an updated on Face Book that God is doing some BIG things in the Milner house. We have been eager to share what God is doing but knew that we needed to clarify some things before hand. We have also been really busy with doctor's appointments and getting the kids ready for school. We were so in awe of what he was doing that we needed to praise him in the moment and let those praying know that God hears our cries.
Monday morning I had my first appointment at the Nuclear Medicine Clinic. When James and I arrived the radiology tech asked me how the liquid diet was going. This caught us off guard because no one had informed us that I needed to be on one. They had not contacted us to inform us that there were several things I was supposed to do to prepare for the test. Since I had not eaten since Sunday night he decided to do the injection so we could start the test. It was very disheartening to see him take the syringe out of the "thermos" that was marked hazardous. This is not something you grow up thinking you will ever have to experience. Don't get me wrong, this is nothing compared to what many go through but each phase of testing brings more emotions and more questions. You find yourself questioning the side effects of treatments and testing and wondering if all this is really necessary.
After they administered the Octrotide and tracer I was able to leave. Within 10 to 15 minuets I had a terrible headache. Thankfully it was gone by Tuesday morning. Monday afternoon I had to return to the clinic for the first set of scans. This set only lasted about 30 mins. I am not a fan of enclosed spaces and to top it off they strap your arms down so they can't get in the way of the scans. As they started the machine I felt a cold burning sensation, almost like your skin is in direct contact with ice. Not sure what caused that but the sensations moved down the body as the machine moved. At least the scans went a lot faster than I thought they would and we were blessed to have the tech that we had. He is a Christian and was very encouraging to us throughout the process. Each morning when I came in he had a new CD playing praise and worship music. He was really upset that they had not prepared me for the test and said that we should talk to our doctor about the fact that she had not given us the required directions for the procedure. We really did not want to have that fight. We have already had several discussions with her and her office for dropping the ball on other things. When I came back Tuesday morning the tech told me that he sent an email to the head of scheduling and to my doctor's office filling a formal complaint. He said these test are super expensive and not something to play around with.
After we finished the scans on Monday I was in a terrible mood. I admit that I am not good with change. We were caught off guard when the tech told us that they had prescribed medication that I was suppose to take 24 hours before the test and that I needed to be on a liquid diet as well. Since no one prepped us for this I would most likely have to do an additional day of scans. Our tech was really upset that they had not prepared me and said
that we needed to talk to our doctor since it was her place to inform us. We really did not want to
have that fight. We have already had several discussions with her and
her office for dropping the ball on other things. When I came back
Tuesday morning the tech told me that he sent an email to the head of
scheduling and to my doctor's office filling a formal complaint. He said
these test are super expensive and not something to play around with.
Monday I was also dealing with the headache and I was having terrible stomach pain. I thought it was because I had not eaten. I found out the next day it was a side effect from the radiation. I hate to admit it but by early evening I was in a terrible mood and just wanted to be left alone. I appreciate everyone that called to check on things but I was just not up to talking. I was really struggling with why this? Not why me but why this? What is the purpose in all these procedures? My body is so tired and every time I go through another procedure we see new side effects or I have a relapse. I am sharing all of this because that evening I had made the decision that when the scans were over if they came back clear then I was done with all the testing. My greatest fear was not that they would find cancer but that after all this we would still have no answers. These past 18 months have taken a toll on our family physically, emotionally and financially. At what point do you say enough. If these test came back normal then I was done fighting for answers. No more doctors and no more test. I begged God to release me from this nightmare and told him that I would be content with the progress we have made. I could live without knowing what was wrong.
Tuesday morning I returned for the second round of scans. James had to go back to work so I went to my appointment alone. I was feeling better physically but emotionally I was still in a funk. As I was taking a shower that morning I received a text from a friend saying that she would meet me at my appointment. I was so relieved to know that I did not have to be there alone. The second day was the longest day and involved several different scans. After the scans were finished I waited for the radiologist to review them and determine if I would have to return for a third round. My prayer was that I would not need to return. Unfortunately the radiologist ordered another day of scans. This meant another morning away from the kids and another day on a liquid diet.
Tuesday morning while I was at my appointment James received a phone call from our insurance company. The lady that called him said she was a nurse case manager and that she had been assigned to contact our family regarding my referral to the MAYO clinic. After talking with her for a short time and explaining that I was in the midst of testing he told her that she could leave me a voice mail and that I would get back with her. She did leave a voice mail and was very kind. She said that she was thinking of me and that she hoped that the scans would reveal some answers. She told me to call her at my convenience and that she had really good news for me about my referral to MAYO.
Wednesday I finished my scans and was released. I was finally able to take my "all you can eat" jello wrist band off. Monday Noah asked me what my wrist band was for and that is what I told him. On my way home from the clinic I returned the phone call to my case mgr. She began by asking me how I was doing and how my scans went. She was very sweet and very caring. She told me that she was sorry that we had been through so much and that she wanted to help us. She explained that when my neurologist faxed the request for me to be seen at the MAYO Clinic they began reviewing all my medical records. As they reviewed my medical history, all the testing that had been done and all the abnormal results it came to their attention that we had a lot going on. They made a recommendation that we be assigned a nurse case mgr. She explained that this was a free service to our family and that we were not required to accept it. She asked if this was something that would benefit our family? She informed us that she had the authority to make decisions for our case and that her responsibility is to know my medical history and to be an advocate for us. We talked for over an hour. At first she just listened to what I had to say about my medical history. Then she asked me questions about my daily needs. She wanted to know if I was able to cook, clean, drive etc. I explained that we have seen a lot of progress but that there was a time when these things were a challenge. I was able to share how meals were provided and how people helped with the kids. I shared that we had a close family and a strong support group. At one point she said "you have an amazing testimony!" I paused after she said that because I had not realized that the whole time I was talking, I was sharing my faith with a total stranger. In sharing my story I was sharing my testimony. What a comfort knowing that they go hand in hand and can not be separated. As we continued to talk, God continued to confirm that this was a divine assignment.
When nurse K talked to James on Tuesday she confirmed that insurance approved our request to be seen at the MAYO clinic in Rochester, MA. Insurance will cover my appointments at in network cost. We will still have to have all Genetics and advanced testing pre-approved but now we have some one that will make sure these are going quickly. I am no longer a claim waiting to be processed but a person. I have been approved for August 10, 2012 through August 10, 2013 and they can extend this time if needed.
This is a huge answer to our prayers but there are still some concerns about going to the clinic. I began to explain to "K" that if they did not think I was sick when I went to Little Rock why would a place like MAYO think I am sick. I have made huge strides since my Little Rock appointment so what if this is another waste of time and money? She told me "He opened this door for a reason." I believe that God spoke through her knowing how much I have struggled with going to MAYO. All of my doctors agree that this is where I need to be but for me it continues to be a struggle. It is very difficult to be told over and over that there are no answers and that it may be physiological.
Still uneasy about moving forward I explained to her that MAYO has had my referral since March and we have not heard from them. I asked if that meant they might not take my case. She asked me if I had a phone number to contact the MAYO clinic. I told her I had the number but wanted to wait till insurance confirmed our coverage before we called. She told me if I can get her the number then she would call and see if she could get things moving. She would call me back after she talked to them. Again I was blown away. God was literally taking burdens off my shoulders and
giving them to someone else to carry.
A few hours later I received a call from "K" and she said that they would not allow her to schedule my appointment but that she had confirmed with MAYO that insurance would be paying in network and she had been given a direct number for me to call. I called the number that she gave me and was given my official MAYO ID number. I was then transferred to the Neurology clinic to make my appointment. I was informed that they did receive my referral and that I was still on the waiting list for scheduling. Rochester has the largest neurology dept of all the MAYO clinics and it is the hardest to get into. She told me that I could call and ask to be scheduled into a cancellation spot but that it could be several months before I am contacted for an appointment. After she told me that she kind of hesitated and then said "give me just a minuet." When she came back she said that since it was late in the day she checked for cancellations. She was able to schedule my appointment for November 12th. Because of the mix up in Little Rock I wanted to make sure that I was being scheduled to see a neurologist. She said that the doctor she was able to schedule me with is the leading neurologist in his field. He is the most requested and the hardest to get an appointment with.
Late Wednesday night we received an email from my endocrinologist that my scans were clear and that there are no signs of Carcinoid cancer cells. This is a huge praise but comes with many mixed emotions. We are relieved by the results but it is difficult to process why he chose for us to go down another road with no answers. I do not know the mind of God but I do know His character and I do believe in His promises. Our battles are not physical but spiritual. We do not know what will bring Him the most glory. What seems like a waste of time and resources to us might mean eternity for someone else.
What else can be said but "praise God from who all blessing flow!"