Scott Berntsen Scott Berntsen Healing

First post: Jan 1, 2021 Latest post: Feb 8, 2021
Hello Everyone who loves and supports Scott on his healing pathway.  This is written by his wife, Mary.  

In the beginning of autumn, I noticed Scott was repeating stories that were significant and important to him and he could not recall that he had already told them to me.  Scott has always had an incredible memory for people and their names so this would be very unlike him.  Initially, we thought it could be early onset Alzheimer's.  (His mother recently passed and she had Alzheimer's and there existed a family history.)  Scott went to visit two different neurologists and he was able to pass testing.  Then, close to Thanksgiving, my son, James and I noticed an increased acceleration in other symptoms in a small two week window.  On Monday, December 7, I came home from work and found him curled in bed saying he just wanted to sleep and that he didn't feel good.  I took the dog for a walk and that helped to clear my mind.  As I was walking, I realized this was not early onset, but a brain tumor.  I turned around and almost ran home to look it up and he had all the markers of a brain tumor.  I called my brother, David who is a doctor and he immediately said that I should get him to the ER and demand an MRI.  (He had requested one for Scott in September, but insurance denied it because he was an out of network physician.)  I am really learning to become Scott's advocate in all this!  The MRI revealed a significant brain tumor in his left lobe and Scott was experiencing elevated symptoms because the tumor was now swelling.  (Headache, fatigue, confusion, blurred vision. ) He was flown to Anschutz Medical Center in Denver where they began a course of steroids to reduce the swelling so they could assess the mass of the tumor.  

Scott's brain responded well to the steroids and as a few days passed, his language improved enough that he became a prime candidate for awake surgery.  His neurosurgeon, Dr. Ormond said he significantly sees better outcomes for the patient in an awake surgery.  A speech pathologist is present and talks to the patient the entire time, so that the surgeon can make quality of life decisions on behalf of the patient during surgery.  Interestingly enough, Dr. Ormond wasn't sure if he could assemble an awake surgery team by Friday, when a surgery was initially scheduled, so it would be tentatively scheduled for the following Monday.  Then I received news, it was moved forward to Friday afternoon and Scott would be the second brain surgery of the day.   My phone woke me up at 6 am on Friday morning and they told me Scott's surgery was moved into the first slot because of the availability of the speech pathologist.  Honestly, that was something that I prayed for because (if you know my sense of humor) who wants to be the second brain surgery on a Friday when everyone is fatigued and wants to go home!?!  

I had to let go that I could not see Scott before the surgery and trust that it would go well.  It was a five hour surgery plus stabilization in post op.  In all of this, even though I stayed and waited hoping to see Scott at the end of the day, the nurse came in to ask me if Scott has been CoVid tested and since they had no record of that I couldn't see him at all until they got the CoVid results.  I am learning to be flexible.  

I want to say I did speak with Dr. Ormond immediately after the surgery.  He is a very direct person who does not offer false hope and I like that about him.  He felt the surgery went well, but as he turned to leave the small room, he stopped, turned, and said to me, "You realize this is brain cancer. "  I replied yes that it was clear to me and I understood.  

The next morning I was able to see Scott and he was very well attended by the follow up staff in the Neuro ICU.  Just to let you know that I try to stay really balanced and aligned in who I am and what I am doing, but when I was with Scott, I fainted.  All the emotion of the last weeks, the surgery, worries, and love I feel for Scott welled up and I woke up on the floor.  I was holding his hand and they were attaching electrodes to his scalp in the most gentle and light way, and he was squeezing my hand so hard I knew it was almost unbearable for him.   

Now he is at a CoVid free UC Health Hospital in Broomfield.  Outcomes of what Scott is dealing with is that he has cognitive challenges in the form of Aphasia.  So, although he can speak words, they sometimes make sense and many times it does not.  Some of you were texting with him before surgery and were receiving garbled responses from him.  He believes he is being clear and is choosing the right words, but on the receiving end it is unclear.  An example would be, he was repeatedly saying to me while becoming agitated, "I need the blue spoose!"  I had been around him enough that I figured out that if he is agitated it usually means that he needs to use the toilet.  As his partner, I know him well enough and they told me I will be the one he can communicate most easily with on this journey.  Physically his recovery increases with growing strength on his right side where initially there was more weakness.  He is able to walk slowly, but he has a tendency to not see or recognize objects on this right side and drifts in that direction.  He receives extra sessions of speech therapy, as well as physical and occupational therapy.  The speech therapist said that with the severity of his current cognitive impairments he will more than likely have challenges ahead.  

At this time, outcomes are uncertain although I do see improvement.  Right now he recognizes very few words, but knows letters individually.  Relying only on pictures as cues is not a solution for communication because that is impaired too right now and he has difficulty explaining what is occuring in a picture.  I am praying each day for incremental changes so communication is eventually a source of joy.  

May I say this to all of you reading this posting?  Our family is humbled and overwhelmed by all your acts of kindness through prayer, understanding, generosity emotionally and financially, and willingness to do be there for Scott's recovery and pathway.  I will be honest Lars, James, and I shed tears privately and publicly as we move through this process and journey to support Scott.  I am very grateful to Dr. Ormond, my brother as my medical coach guiding me through this and teaching me to become a stronger advocate, and my friends who bolster me up when I fall.  My boys are my light in this dark time lifting me up.  We are fortunate to have had so many incredibly good memories to look back upon as a family that it strengthens us for the upcoming unknown outcomes of the future road ahead.  We are returning love to each one of you and we are grateful and know you are a blessing in Scott's journey as he tries to find his way back home.