Exhausted but excited.
Many of you who have experienced health issues or who have had family on a similar journey understand the mixed emotions of meeting with healthcare providers and the range of feelings when considering all of the options. Today was tiring because it started at 10:00 a.m. when we met with Elizabeth’s neurologist and didn’t end until 5:45 p.m. Ultimately, the information we received today was overwhelming, but we have a clear plan of action.
During her morning appointment, the neurologist asked Elizabeth to perform a variety of tasks to check her neurological functions such as walking toe to heel on a straight line. Then we turned to the MRI pictures, and he talked about some of the options. He surprised us, though, by telling us he was switching surgeons on us. The newer surgeon specializes in gliomas, the term used for her tumor. Instead of an appointment tomorrow, he had scheduled her with a surgeon this afternoon. As the neurologist explained, the Mayo Clinic is an institution filled with specialists, and each of those specialists is highly trained in a specific field. Elizabeth’s new neurological surgeon happens to perform the type of surgery she requires more than anyone in the world. Yes, you read that right….the world.
After lunch and a bit of down time, we made our way back across the street to see the neurological surgeon. Immediately, Elizabeth felt at ease as her the surgeon walked in the room. His excellent bedside manner and personality helped us connect with him, and as a result, we feel confident in his assessment. Furthermore, what her surgeon said was almost verbatim to what the neurological surgeon in Denmark had indicated. The consistency in their medical assessments allowed us all to breathe a little easier.
About the size of a mandarin orange, her tumor has been growing for awhile. The surgeon was emphatic, though, that the migraines she has experienced since high school are in no way connected to her tumor. In fact, he said that unfortunately, even once the tumor is removed, she will probably still have the migraines. At this point, we believe her tumor, although rather large, is not cancerous. The neurologist had told us earlier in the day that her tumor is not curable, but it is treatable. As the day progressed, this made more sense, and the comment actually reflected what we had heard in Denmark. While they believe the tumor is only a stage II, it could be stage III (or more cancerous). They cannot know until they send the tumor to pathology. It is not curable, because there is no guarantee that the tumor will be completely gone or won’t grow back. However, at this point, no one has said to us that this is a life-ending tumor. If left unattended, it could become aggressive and shift to a stage III tumor.
So what is our plan of action? We came to Minnesota prepared to stay. However, after talking with the surgeon, we will be coming home for ten days, and will return on February 11. On February 12, she will have a variety of tests, including a functional MRI which will identify which parts of her brain are controlling different actions. Her surgeon also wants to use the MRI to guide the operation sort of like a surgical GPS. This type of MRI is an intra-operative MRI, one that happens before, during, and after to make sure the brain stays stable.
Because the tumor is in the left temporal lobe and is pushing against her brain stem, the tumor is in the area that controls speech. As a result, he wants to perform the operation while she is awake. I felt Elizabeth’s anxiety increase when he mentioned this form of operating, but he assured her that she would remember very little, and she would experience no pain during surgery.
After cutting a large question mark incision starting in front of her left ear lobe following up over the ear and around the temporal lobe, he will take a part of her skull out, and then as he begins to remove the tumor, they will bring her out of sedation. Because she will be awake, he will be able to have her speak to him and even read or respond to pictures. Using this method of surgery, he will know if he is impairing her speech.
Every step of the way, Elizabeth has come in contact with the kindest people. From the staff at DIS to the Danish healthcare personnel to the nurses and doctors at the Mayo Clinic, they have taken their time with her and have given her all the confidence in the world that she is truly in the best hands. Despite the risk involved, Elizabeth’s emphatic “let’s do this” was encouraging to her surgeon. Because he is going to use a special MRI with infrared cameras and will keep her awake for part of the 8-10 hour surgery, he must use a special operating room at St. Mary’s Hospital here in Rochester, MN. As a result, we will have to come back on February 11 for a February 14th surgery. HAPPY VALENTINE’S DAY, ELIZABETH!
One of the biggest surprises we heard today was the fact that she would have surgery on Friday, and would possibly be discharged on Sunday. I am pretty sure I was in the hospital longer when I had each of my children! We will stay in Rochester for three or four more days when we will have a follow-up appointment with the doctors and to discuss the pathology report. Elizabeth will have titanium screws for the rest of her life, and once she is out of the woods and free from having an MRI every few months, she will have to have annual MRIs to make sure subsequent tumors do not surface.
So, for now, we wait. I cannot imagine the next two weeks will go any slower than the past week has gone. Brian and I will head back to work, and Elizabeth will have a few weeks to catch up with friends. In fact, she is even planning a trip to the Delta Gamma house at Denison University to participate in bid day. While we know she will have four to six weeks of recovery, we are all breathing a little sigh of relief knowing we have a clear plan of action, and even more importantly, a plan of action being guided by one of the best surgeons for whom we could have asked.
This morning, a kindred spirit of mine texted me a quote by Rilke that speaks volumes. “Believe in a love that is being stored up in you like an inheritance, and have faith that in this love there is a strength and a blessing so large that you can travel as far as you wish without having to step outside of it.” Hang on to that thought. It works!