October 31: Day 153

I am long overdue for an update and more so a very public thank you. That being said, I have struggled more than is typical to come up with adequate words of thanks and gratitude to even begin to scratch the surface of the pure love, light and grace that was showered upon our family at the "Shine A Light For Susan 5K" that took place last Friday.

We are all so very humbled and in complete awe. As I told Jamie White, the fearless leader behind the operation, (along with the entire Fellows Elementary team) she and "the team" gifted our family an outpouring of love, support, hugs, and generosity that we will remember the rest of our lives. 

It was a beautiful, completely overwhelming and awe inspiring thing to look around and see hundreds and hundreds of people who touched my parents or one of our lives, quite simply 'just show up'Everyone of us from Mom, Dad to our extended family was gifted the opportunity by your presence to bask in this miraculous outpouring of love and groundswell of support. 

To each and every one of you that showed up, sponsored, volunteered, ran, contributed, sent love, prayers, support; THANK YOU. We may not have had the opportunity to hug, talk to, honk at, or thank you all in person, but we KNOW you were there and we are so very grateful. The Fellows team also created for all of you, I believe at least, something tangible to do, in a sad and seemingly dire situation that seemed there might not be anything to do.There was so much love and light there. We are so very, very grateful.

The great learning in this event and much of this journey for me, has been about presence in various forms and through this event it became to so clear to me yet again, there is such power and abundance in just showing up. 

In the past when someone close to me struggled with a loss, a disease, an unfortunate circumstance, I would analyze to paralysis finding the proper words, or response, many times to the point that I did nothing. I know now the simplicity and grace in presence; a hug, a card, a note, a passing squeeze.

Show up for someone today. The gift is in the giving.


On another front, we visited Dr. Otteman today and Mom is finishing up as I type, her third infusion. She will receive one more and then there will be more scans to assess how the Avastin is working. Thanks to Peg Powell and Sharon Gabrielson for keeping Mom company during her infusion so I could go back to work. I am fresh out of "family emergency" hours, so Peg has been doing double duty helping out with some of these longer appointments. 

If you've seen Mom of late, you may well already know that her abdominal cavity is exceptionally swollen, the point it appears she is about to deliver an alien or something any moment. While not painful, this is exceptionally uncomfortable, and it is putting pressure quite literally on all sorts of respiratory and digestive functions, and it is greatly inhibiting her mobility. 

She has had thus far the CT, xray, and ultrasound to try to get to the bottom of this. After ruling out more/new cancer, they thought it might be the result of fluid retention, and after ruling that out, they decided it is gas. Only today did when Dr. Otteman shared with us the scan did I see HOW MUCH gas. The xray looked like she swallowed about 25 ping pong balls, each one representing a different gas pocket.

There can be a number of reasons for this, the most notable and likely of which is food. In short, the carbohydrate extravaganza must come to an end, and she also very likely also will need to discontinue lactose in her diet as well. One of the 'perks' of Nexavar in some people is lactose intolerance, and our suspicion is that she has not yet recovered from this and that perhaps she is also losing/lost her tolerance to gluten. 

The decrease in stamina and mobility is exceptionally disheartening and frustrating for her, but to hear today that gas is the culprit is probably darned near best case scenario, and quite workable. Part of the balancing act will also involve getting up and moving even in short stints to keep things moving. 

As I mentioned above, the infusions can make Mom very tired and we are seeing a substantial increase in the hours of a day that she needs rest and or sleep. That said, we are encouraging her to get out of the house here and there, or even if only for a few minutes to visit with folks AT her house in short increments to keep her mind in the space of happy presence. 

In gratitude,