Two Weeks Later

Two weeks after Kevin's surgery, we had a long day of scheduled appointments. For those who are interested, the details are too long for a text, so I'll share them here.

Gundersen rescheduled our appointments at the last minute so we were (or at least I was) a bit apprehensive as to how this day would unfold.  Kevin's appointments were in Gundersen's East Building which is pretty easy to navigate.  We started at 8:45 a.m. with staple removal.  The fabulous nurse made Kevin feel very comfortable and completed the process painlessly.  No more zipper head! Unfortunately, she didn't clear him for driving until he meets with the surgeon again in January.

At 10:00 a.m. we needed to be back in West Salem to meet with our lawyer.  She will update our wills and gave us each a To Do list before we meet again.  At 11:00 a.m. we met with our financial planner in Onalaska.  The goal there was to reassure Kevin that I will be okay financially.  He needed to hear it from someone else besides me.

Thanks to a gift certificate from Kevin's brother, we enjoyed the soup and salad lunch buffet at Piggy's.  What a treat!   Thank you!

1:15 -  Back at the East Building to meet with a social worker.  At this point, she gathered information to get to know us better and just let us know she is part of our care team if we need her.

2:00 - Met with the radiation specialist, Dr. Driscoll.  On Monday, December 28, Kevin has an appointment for the planning phase of the treatment.  He will have a mask made which will assure his head is positioned correctly each time he receives radiation. Radiation treatments should begin the next week.  Kevin will receive treatments Monday through Friday for six weeks.  The treatments are short so he should be in and out in 30 minutes.  He will spend more time traveling to and from than in the actual treatments.  At the same time, Kevin will be taking chemo pills daily.

After six weeks of radiation and chemo treatments, Kevin will have a month off to recover.   They will do an MRI at the end of the recovery month and every three months to check his status. Chemo will start again, after that month off, with pills five days in a row and then the rest of the month off.  That will continue for six months.

Possible short term side effects of the radiation:  tiredness, skin reaction to the treated area, hair loss in the treated area.  Possible effects months after radiation: short term memory loss (most common), decrease in fine motor skills, decrease in executive function (tasks that require high degrees of concentration).  Improvements can be made over time or the effects can be permanent; it varies by person.

3:00 - Supposed to meet with Dr. Kwong the oncologist in charge of chemotherapy.  Somehow they lost track of us in our walk from 1st floor to 2nd floor and we waited for 45 minutes.  Needless to say, our energy was waining along with our patience.  The pill form of chemotherapy called Temodar (aka Temozolomide), which Kevin will be taking, doesn't seem to have the awful side effects which I have heard others have endured.  He could have some nausea at first.  In addition, he will be at an increased risk of pneumonia so he will be on an antibiotic.  They will monitor his blood counts weekly.

During the day, Gundersen continued adding appointments that we didn't know about. Not sure how that happens. We met with their financial representative to talk about our insurance coverage.  What I gathered from that conversation was we had another person on our side if we had any financial questions.

The final nurse scheduled to meet with us never showed up and we had had more than enough for a day so we checked out around 4:30.

The hard reality of all this is that there is not a cure.  We will eventually lose Kevin from Glioblastoma.

With all that said, we have a lot to be thankful for...

• As we continue to say, Kevin is an active part of our life today and we will fight to keep him as long as we can.
• His treatment is manageable and shouldn't decrease the quality of his life too drastically.  Many, as we witnessed today with the constant stream of patients in and out of the East Building, are enduring much worse treatments.
• We have insurance and savings and sick days.  Not everyone can say that.
• Along with the wonderful support of family, friends, and co-workers, we now have a team of Gundersen personnel to see us through this.  Based on the business cards we received today, I don't think we have enough for a football team, but definitely a basketball team with reserves on the bench.

Thank you for your continued prayers.  Deuteronomy 31:6 was shared with us to see us through our long day; it certainly helped.