We’re home! It’s been a long week. Our journey began with a slight hitch in our giddy-up. It was too windy to fly on Tuesday so we drove to Mayo. It’s a good thing too because when we went past O’Hare, we could tell planes were struggling with their wings dipping left and right. We even saw a jet abort their landing. Never saw that before. I wouldn’t have wanted to be in a single engine plane in those winds. Thank you Randy! The drive went well and I had no idea that Wisconsin and Minnesota were so pretty. The Mississippi River is beautiful.
We never expected to be at Mayo for as many days as we were. We almost had to stay one more day (today) and come home tomorrow. Then God worked another miracle. I saw God in small ways and big ways this week.
Dr. Goetz was the doctor we were scheduled to see. He’s an oncologist. After waiting two hours to see him, he gave us 5 minutes of his time (two of which were taking a phone call) and told us we need to see a neuro oncologist and have an MRI. He acknowledged the MRI would be early, but necessary to make a decision. Needless to say we were frustrated, disheartened and discouraged.
God moment: They got us in with the neuro oncologist the following day! Typically it takes months to get in with them, but we got in the following day!
One more night at Mayo. Unfortunately we checked out of our hotel expecting to go home after seeing Dr. Goetz on Wednesday. So while I was having an MRI, Dusty found another hotel which had one room for one night (God moment). Busy town.
Thursday our appointment was scheduled with Dr. O’Neill (neuro oncologist) at 2:00 p.m. We were in his patient room until 5:30 p.m.! First we saw Dr. Chang who ran me through what I lovingly call neuro Olympics. Follow her finger with my eyes, touch my finger to my nose, resist her push/pull, etc. I passed in flying colors.
After a stretch of time, we saw Dr. O’Neill who was very personable and informative. He and Dr. Chang compared my end-of-July MRI to the MRI I had on Wednesday. There was a significant difference in the tumors. The huge one in my cerebellum (affects balance, etc) is the one that’s of concern. They determined that it is bleeding slightly (not hemorrhaging). He wanted us to stay another night and meet with the neurosurgeon today. When they left the room I could’ve cried. I was planning on being home Thursday. I missed my kids like crazy. God moment: Instead of coming back to the room with an appointment for today, they came back to the room with Dr. Ian Parney, Neuro Surgeon.
Dr. Parney explained that I had an excellent response to radiation even on an MRI done early. He said it was amazing. I call it a miracle. (God moment)
Dr. Parney gave me three options:
1. Wait four more weeks, have another MRI to see if the tumor has shrunk more. He didn’t think it would since there is blood present. Risks are slight hemorrhage (balance and headaches) to a large hemorrhage (life threatening).
2. Open me up and operate on the tumor. Many risks involved.
3. Gamma Knife Surgery. This is his recommendation. It involves screwing a metal cage to my skull in four places. Two on my forehead and two on the back of my head. You would think they’d knock me out for this. Oh no. They give me local anesthetic where they put the screws and some “I don’t care” medicine. They better double the dose because I really care. Then I have an MRI with the cage on my head so they know precisely where the tumor is in relation to the cage. Then I go to surgery, which isn’t really a surgery at all. It’s a very high dose of radiation (laser) given in a very precise, specific location of the brain (my tumor) and will knock it out.
We then asked the question everyone skirts around. Life expectancy. He would precede all of his opinions with “I don’t have a crystal ball”. He goes on averages. On average, someone with brain mets (me) lives about a year. However, I have a few things going for me. I’m young. I don’t have cancer elsewhere in my body. I’ve had a very good response to radiation which tells him I’ll have a good response to the Gamma Knife Surgery. I had a good response to breast cancer treatment. He has seen women who had breast cancer mets to the brain live for years. He also forgot to mention that I’m a child of God and He will heal me.
We felt like we had the complete Mayo experience yesterday. Wednesday was just a bad day.
We were nervous about going to Duke because we didn’t want a repeat of Wednesday (a doctor trying to brush us off). We wanted to be sure we were seeing the right type of doctor. After calling Duke and talking with them, they assured me I was seeing the right doctor so we decided we’re still going to Duke.
We are SO THANKFUL we at least have an option at Mayo. I feel better if I get a second opinion before going through the surgery.
Thank you for your prayers. The week went well and it was great to see God show up in so many ways.
Brooklyn is doing well at school (loving it) and Max and Samantha had fun with grandpa’s, grandma, their aunt Becky and Kathy Timmer. Thank you everyone for watching the kids and continuing to do so. We couldn’t do it without you.