Tuesday June 7, 2011

I am writing from the comfort of our air conditioned house as it is crazy hot here today - 99 degrees this afternoon! I find myself thinking about Erin and the 100 other 5th graders spending two nights down in the dorm style rooms at Eagle Bluff. Not ideal conditions, to say the least! I'm anxious to have her return tomorrow and share her stories with us.

The last couple of days have been strange without our daily routine of heading to Desk R for healing sessions. Dan and I even found time to play a round of golf together today. Something we did and enjoyed often before everything changed. Today we hit good shots, we hit bad shots, we made birdies, we made bogeys - just like the good ol' days. Sometimes we let our minds wander to where we've been and where we're headed, but we did our best to enjoy a good walk together...

Today's appointments brought some closure to the treatment phase and provided a game plan for what's ahead. First off, Shannon, Dan, and I had a chance to chat with our social worker. She continues to provide support and strategies for us as we try to balance what we want and need with the wants and needs of our family and friends. The support continues to be amazing and we never want to discount how important that is to us. But, sometimes the timing just isn't right. Sometimes we are just mad or sad or tired or don't want to talk and nothing anyone could say or do makes it better, yet people try, because they care. We strive to be as graceful as we can on this journey, but sometimes we fail.

While Shannon met with the social worker, Dan and I spoke briefly with Dr. Khan in hematology and clarified that the maintenance dose of chemotherapy will begin in early July. The exact date is yet to be determined, but the guideline is 6 weeks after the last dose of Temodar was taken, which puts us around July 13th. Dr. Kahn also explained that Shannon won't have to do another infusion treatment, but instead will begin taking an oral medication, Bactrim, each weekend once she starts taking the Temodar again. This will provide the protection her lungs need when her immune system is depleted by taking the chemo.

Shannon's second appointment today was a follow up with Dr. Laack in radiation. We learned that the hair loss will end in the next week or so and that the timeline for it growing back is around three months. She also confirmed that the follow up MRI will take place exactly 4 weeks after radiation: July 1st. So, that day, Shannon will have a scan and then an appointment with Dr. Laack to see the results. It goes without saying that we will be anxious to see how effective the treatment was...

The last appointment of our day was with our neurologist, Dr. Keating. She loves to chat and while Shannon was eager to move things along, Dan and I enjoyed sharing stories back and forth with her. A complete neuro exam showed all positive signs and Dr. Keating told Shannon she looks great. She also complimented Shannon on her strategic placement of her headband! We will next meet with Dr. Keating in August to check all the neurological markers again.

All that's left on Shannon's Mayo Clinic schedule this week is a blood draw on Friday. One more check of the counts before they free us for three weeks. After that, we have no return appointments scheduled until the July 1st MRI.

So the next five days: two more days of school, one golf team party, one blood draw, one last soccer game, one hockey camp, one cousin's graduation open house and then we are free to go and travel and enjoy the first part of our summer and try not to think about the tumor...

I updated my iPod today and the song that struck me was Coldplay's Everything's Not Lost:

When I counted up my demons
Saw there was one for every day
With the good ones on my shoulders
I drove the other ones away...