Somehow We Start Back at the Beginning

If you have been reading my updates, you all know that I try to praise my medical professionals as much as possible. However, I was very disappointed in the medical staff over the last three weeks. 

As many could tell from my last post, things were not going well the last few weeks. I tried to get help and became frustrated with the lack of understanding from medical staff who did not know me and were not listening. They spent a lot of time minimizing the issue or coming up with reasons for my pain that were not accurate. Mainly their solution was to push stronger pain medication and antibiotics, neither of which were needed (I did not have an infection according to blood work).  I tried to explain where my pain was located, but the NP insisted the pain was radiating from my back which was just a side effect from my recent radiation. When I told her that I knew the difference between back pain and kidney pain, she ignored me. I am convinced she wrote in my chart that I had back pain. 

When I called back on Monday (April 5), I was once again speaking to a secondary nurse. She asked if I had taken pain medication. I told her I finally started taking Tylenol 4 for pain on Saturday. She asked where I had gotten Tylenol 4...what?...Dr Drengler had prescribed it to me last June!!  I only take as needed so I had some and it seemed to help for short periods of time. Since she acted as if I was abusing pain medication or obtaining medicine from an unknown source, I was surprised by her next response. Why didn’t I take the stronger pain medication prescribed to me?   I told her I really did not want to cover up the pain without knowing what was causing it. So she told me she would speak to Dr. Drengler and get back with me. Several hours later, she called to tell me I would be scheduled for an MRI later in the week. 

So when I had not heard back by Wednesday, I called again. Lo and behold!!...I got Monica on the phone!!!  She told me that she did not even know about the MRI and I would need to talk to scheduling. I was transferred and was told that all was in place for the next day for an MRI of my lower spine. Nope...nope...nope!!!  That is when I knew the correct information was not getting to Dr. Drengler.  I asked to be transferred back to Monica because the wrong scan was being ordered. After a talk with Monica, I waited for a response. I was then directed to come in the next day for a CT scan of my abdominal and pelvic area. 

This scan was completed Thursday with no difficulties and I would have the results back in time for my scheduled appointment on April 12. 

However, I got a surprise phone call from Dr. Drengler early afternoon on Friday. As much as I was glad to hear his voice, I knew he could only be calling with bad news. The basic information I have now is that there are new masses in my liver. There is also cancer spread in other areas. The option to repeat the treatment I had last summer is not going to be available in fear that adding more radiation to my body would risk shutting down my organs. We are now looking into chemo-infused embolization. We will continue with the immunotherapy for now. We will discuss future plans in more detail at the Monday appointment. 

I was given a new prescription for the Tylenol 4. I am taking it more frequently and trying to rest this weekend. God continues to show us the way, even if we do not understand which direction the tracks of this ride will take me. Please continue to pray!!  I am so blessed to have you all with me.