Devastating news!!!
We left for Rochester late Monday because Mike had a CT scan at 8 AM on Tuesday, along with Doctor appointments, and an MRI in the afternoon.
We got devastating news from both the CT scan and the MRI..
The lung tumors are all growing and one is pressing slightly on Mike’s airway and that’s why he’s been a little bit short of breath and wheezing some. Dr. Molina wants to do a biopsy of the biggest tumor to see if the cancer cells have mutated.
If that wasn’t bad enough news, the MRI showed more metastasis in his brain. Not just the one they saw a couple months ago.
The neurosurgeon did talk about the possibility of whole brain radiation, but we did not want to go down that route yet and he was okay with Gamma Knife Surgery which had already been set up for the next morning. There were 7 GKS’s for that morning, so we didn’t have to show up until the late group at 8:30 AM. I stayed with Mike until they started his IV and gave him Ativan (to calm him before screwing the frame into his skull).
I left the hospital when they took him to start the procedure to go for a run near our hotel to clear my head. I got a call about a mile and a half out, saying they were not going to proceed with the procedure and the doctor wanted to talk to me! Obviously, I was very scared because the nurse couldn’t give me any details, so I ran back as fast as I could, threw our bags into the car, and got back to the hospital.
When I got there Mike was chatting with his amazing nurse Ali, she was a gift from God to both of us! Dr. Parney and his team came in and told us that there are at least 25 more nodules in his brain when they compare it from the last scan using their computer software planning machine. That is way too many areas to do gamma knife surgery on, so he told us the most likely scenario is that Mike would need whole brain radiation. First they want him to have an MRI of his spine which they scheduled for next Tuesday night to see if there are any cancer cells in his cerebrospinal fluid, which is called Leptomeningeal disease. He suspects there may be, by the way things look. This is absolutely Devastating!💔
Today we had a zoom call with Dr Yan, the radiologist to talk about possible whole brain radiation and or cranial/spinal radiation. Both of these options have a long list of side effects and she would like to see other options. A CT guided lung biopsy is scheduled for 10 am on Monday, August 19 and we would so appreciate prayers that they find a gene mutation that there is a targeted drug or chemo drug for, and one that crosses the blood brain barrier!!! A mutated gene is really the best option at this point! The problem with this is it takes 3 to 4 weeks to get the results from the biopsy and we really need to do something soon! They will go ahead and set up things for possible radiation like face mask/shields etc…but, we really don’t want to go this route if at all possible.
The past few days have been a blur with so many emotions, it feels like we’re living in a nightmare that we can’t wake up from! We have no idea why this cancer that has been behaving relatively well for 23 years has decided to go crazy!?! I wish I could tell you that we’ve been only positive, but that would be a lie! Mike and I and all of our kids have shed so many tears and we have gotten mad and let our thoughts run wild but… we do continue to trust in God’s plan for our lives. None of this makes sense to us right now but.. some day it will.
Be blessed,
Paula