More Devastating News..
So much has happened since I last wrote a blog post! We had mostly decided to go ahead with the radiation, but for some reason we couldn’t quite commit 100%.
So after talking with Mike’s Neuro-oncologist in CA and with his Oncologist at Mayo, we decided to start a different cancer drug called Cabozantanib to see if it would do a better job of crossing the blood brain barrier to shrink the brain metastasis.
It took some time to get approval from insurance and to get the drug from a specialty pharmacy. When it finally came in, Mike took his first daily dose of “Cabo” on Tuesday morning of Feb. 25th. Later in the day around 3pm we took a mile and a half walk, then I stopped to get chicken eggs from our barn while he went in the house to sit down and rest.
When I came in the house about 10-15 minutes later Mike said he was getting a migraine because he had an aura in his right eye. I gave him Excedrin migraine but a couple minutes after taking it he said something that didn’t make sense, he also stared at me blankly when I questioned him. I got scared and asked him a few more questions which he couldn’t answer and he couldn’t find the right words for common things, so I called Jordan at work and he and Josh came out to the house.
I called the on-call oncologist at Mayo and they told me to take him to the nearest ER, so we all went to Floyd County Hospital where they did CT scans and other stroke tests. Jack and a friend were heading to Dubuque to watch the Loras/Wartburg basketball game, but turned around and came to the hospital.
Mike started to improve shortly after getting to the hospital and the scans showed that there was no swelling or bleeding in his brain and they eventually discharged us around 9:30 pm with instructions to get an MRI and EEG at Mayo ASAP. Mike was already scheduled to have CT scans on Friday, Feb. 28th, so they pulled some strings and got him scheduled for an MRI the same day.
We drove up to Rochester early Friday morning and they started an IV for the contrast for the MRI. After leaving the hospital we went to Driftless Hydration for Mike to have some blood drawn for a Northstar test that Dr. Kesari from CA ordered.
Unfortunately they couldn’t use his IV that Mayo left bandaged on his arm to be used later for his CT scan. They finally got the blood they needed (3 tubes) after the second attempt.
On our way to lunch Mike’s MRI results came through on his portal….. not good news at all! They were saying that a few spots in his brain were stable, but some grew and they said he had “progression of leptomeningeal disease”….. previous MRI’s of the spine and a spinal tap did not show LMD so we were stunned, sad, and confused!!! We were no longer hungry, but tried to eat lunch through some tears.
Back at Mayo they could not get the original IV to work, so they had to pull that and try again, and again, and again, and again… finally with the help of an ultrasound machine they got an IV to work to put contrast in for a clearer scan. Unfortunately Mike was poked a total of 7 times, so he is bruised up.
On the way home his CT scan results came to his portal and they were stable except for an enlarging lymph node near his trachea. Portal messages are good and bad, good because you can read the interpretations of what is going on shortly after the procedure, but bad because you are left with your own thoughts and “Dr. Google” before you can speak with your doctors. Especially on a weekend! Monday was mostly spent on the phone with doctors and they all agreed that Mike needs to have radiation to his brain and spinal column. Everyone agrees that he does not need another spinal tap, because the MRI findings are the most conclusive in identifying leptomeningeal disease.
We were scheduled for mask fitting/simulation on Thursday, but Mike’s radiologist called and wanted him to have it done Wednesday because she is going on vacation and wanted to start the planning phase before she leaves. We packed up some bags for a hotel stay and drove in heavy rain last night to beat the blizzard. The mask fitting is done and we are staying another night in Rochester because of snow and super high winds here and at home. It is much quieter here, because we are remodeling our kitchen at home….. really bad timing!
This is by far the hardest thing we have ever been through and we have had every emotion there is! The last couple of Sunday’s we have watched Life church with Pastor Craig Groeshel with Jack and Chelsea and the message has been perfect for this season we are in! Usually when we watch church online we watch Pastor Mark Driscoll or Pastor Greg Laurie, but God knew we needed the sermons about doubt. Two weeks ago Pastor Craig’s sermon was about all the people who had doubts (Peter, Thomas, etc…). Jesus didn’t condemn them, He gave them grace.
Last week he preached from the book of Habbukuk. Habakkuk doesn’t like what is going on, he doubts God, but also trusts Him. He wrestles with Him, but also embraces Him. Pastor Craig said that doubt isn’t the enemy of faith, but is often a pathway to a deeper and more meaningful faith. Our family has lots of doubts right now, but we trust that God is who he says He is and we can bring our doubts and questions to Him. We can wrestle and embrace at the same time!
I still continue to see eagles everywhere I go and I am still looking for answers as to exactly what God is trying to tell me! There are over 30 Bible verses about eagles, often using eagles as a symbol of strength and God’s protection. Maybe He is just giving me strength for the journey and protection along the way!?!
Be blessed,
Paula
