It All Works Out

Twice last week I had contacted Mayo trying to get an appointment with Dr. Uhm.  Once the MRI is read and we have the results, we like to get Dr. Uhm's opinion since he specializes in the brain. Unfortunately, I wasn't making the right connections or saying the magic words to make that appointment happen.

Friday, around 5:30 p.m., we were just back home from the days' appointments and running some errands when the phone rang.  It was Dr. Conway...on a Friday at 5:30pm...of Memorial Day weekend.  That guy is amazing!  We had left his office earlier that afternoon with the plan that he would contact the Optune rep regarding more information.  Dr. Conway didn't have high hopes of actually reaching anyone since it was a Friday afternoon before a holiday weekend.  However, things were going our way.  The rep contacted Dr. Uhm (from Mayo) who said we should try to come to Mayo on Tuesday and he would work us in to his schedule.  Dr. Conway said, "I know it's late notice, but he'll try to work you in on Tuesday."  Great!  That's what I had been trying to achieve earlier in the week and now I had made the right connection.

You know how you hear something and immediately think, "Terrific!" and then reality sinks in, and you start processing the details, and then think, "How is this going to work?"  It's after hours on Friday.  No one will be in the office on Monday.  We don't have a time for this appointment on Tuesday and it's not looking like anyone is going to be contacting us with any additional information. How is this going to work? For a planner, this seems a bit outlandish.

We contacted our bosses, packed the "bags" with medical info and plenty of reading material, and headed out bright and early this morning with plans of "camping out" in the waiting room until Kevin could be seen.  Although we got a tiny reprimand, "Just this once we'll work you in," they set an appointment time for 10:45.  We didn't quite get the reprimand since we thought it was their idea, but who cares.  We were getting what we wanted.

Treatment options according Dr. Uhm from most aggressive to least aggressive:

• Surgery - not a good idea; tumor is too deep and too risky
• Repeat radiation - not recommended as too much radiation can cause permanent damage
• Another round of Temodar (chemo) - not a good option at this point because of tumor progression
• Optune (device worn on head which emits electrical impulses) - not recommending at this point. Because Kevin is experiencing symptoms from tumor progression, Dr. Uhm does not feel the Optune will work fast enough.  It can take 3 to 5 weeks for the Optune effects kick in. Interestingly, the Optune is how we got our foot in the door to get this appointment and it wasn't even a serious contender from today's options.
• Avastin - This drug is a 90 minute infusion which should affect the tumor and help Kevin feel relief from the tumor right away. The infusion is repeated every 2 weeks but can be completed in 30 to 60 minutes depending on how well the first treatment goes.

I've been pretty nervous about Kevin receiving this drug since it seemed to be one of those last ditch treatments.  But my opinion is being swayed, especially if it can offer some relief to his current symptoms.  Kevin is scheduled to receive that initial infusion on Thursday morning.  Kid 2 (Kailey) is going to be his trusty sidekick that morning.

Ironically, Dr. Uhm is attending a conference in Chicago this weekend in which one of the presentations will report findings on combining Avastin with the drug CeeNU (or lomustine).  Based on what he learns, Dr. Uhm may add the lomustine drug to Kevin's treatment. We will wait to hear more on that.

So today, we are thankful for...

• Bosses who understand our situation and let us clear the schedule to be gone.
• An uneventful drive since Kathy was at the wheel this morning.
• Doctors who go above and beyond to make things happen.
• Plenty of hospital employees and volunteers who are willing to help us out and attempt to answer our questions
• An inexpensive yet fairly tasty hospital breakfast which provided nourishment and helped us pass the time (2 orders of scrambled eggs and sausage for $3 total).
• Quality health care facilities close to home.
• How things just seem to work out.

Editor's Note:  I didn't get my Bible verse included as usual before publishing.  A good friend sent me this one.  Thanks, Dave.

And we know that in all things God works for the good of those who love him, 

who have been called according to his purpose.

Romans 8:28