June 17: Day 17

A quick update from the trenches!

 

Mom is several days into the Nexavar and still tolerating it well. While we were forewarned that most folks experience side effects at around weeks four and six, we also were told that some people do have immediate problems and sometimes the dose has to be cut significantly, and some folks simply cannot tolerate the drug at all. 

At the moment we are happily where we are.

That being said, Mom is tired and moving around a great deal slower than her previous mock ten speeds. As I mentioned in a prior post, mornings are significantly harder for her because she has a difficult time breathing and because it takes some time for things to "settle" after rest. 

We are asking that no one schedule visits with Mom before noon.

Couple the lung fluid build up that impedes her breathing post sleep, with the Nexavar requirement that she needs to have around an hour and a half of fasting on either end of her medication and she has a significantly slowed progression from bed, to shower, to downstairs, and by the time she gets there she's again tired. 

I will address the elephant in the room here and say that we were warned by multiple people of the 'backlash' that occurs when the drug starts and constant questioning begins: is the fatigue that the tumor continues to grow, or that the drug is/isn't working? How do you know the drug is/isn't working? 

These are all great unknowns and in God's hands, but rest assured, we are told the fatigue is normal no matter. We will likely not get a great indication until we visit Dr. Karwal in early July and he tests the tumor markers to know what's happening with the Nexavar, but we do know that each day Mom has and she feels good for a good portion of the day is a gift and our intention is spend that time enjoying one another versus questioning 'what ifs.' 

Mom has spent a fair amount of time worrying about responding individually in thanks to each of you who has brought food, sent flowers, and the like. We are all in agreement with Tyler as he told her, "Grandma, for this one time I think you can get a free pass on the thank yous." Nonetheless, she has brought this up a number of times now so I wanted to address it again publicly in this space. 

We are so very, very grateful to each of you for everything you are doing. At some point I hope we can respond in kind to someone else in the same way you have lifted us up and I know I speak for the rest of my family in saying just this: we will.

The Assistance Account that was started by Lathams and others from the City, Fire and Police Departments is also up and running. The account is atFirst National Bank in Ames and money can be deposited directly theSUSAN DOYLE ASSISTANCE ACCOUNT

Please continue to include Mom and the rest of our family in your thoughts and prayers; we feel all your love and we continue to be uplifted by each and every one of your comments, hugs and well wishes.