This quote may seem radical (Alex is a self proclaimed mamma, author, maker) but I can understand the sentiment. When you feel your life force being crushed out of you, especially when you are sick and dying, it really makes sense as the only thing you can do. Replace the word "joy" with "peace" and bingo, that's me. Peace and quiet contemplation create great joy for me. I absolutely need stillness for my mind and spirit to come together. To prepare for my journey into death, and to bring peace and joy to the journey, I must choose to ignore the noise and hold a peaceful space.
The "invite" part of this call to action is critical. I've invited a considerable amount of what my son calls "burden" into my life. I did it willingly. I continued to cook and clean and tend others, even after my diagnosis, because this is a way I have always shared love. I have adored having my children close and coordinating events, it brought me great joy, but now I need to set that burden down. As Alex says, to literally ignore those who demand it of me. It may sound selfish but I don't want to be a tender of others anymore, only in small energy retrievable reciprocal spurts.  You can't imagine how difficult it is for me to do this but I must demand time for myself. Today I am on the 3rd day of a three day retreat and it has been a blessing that helped me arrive at this place. Those I tend will find their way, stronger for carrying their full burden and better prepared for when I am gone. I still love them, but this is the point where I stop and wave them on.

Wishing Everyone a Fantastic New Year.

Plans are on track here in Minnesota for a wonderful Christmas. Benihana is waiting with a hibachi table set for 9. Christmas morning we will feast and open gifts. My skates are sharp and I hear REI has skis for rent. This is a winter for brilliant re-experiences, and so much more meaning.

Update on my health is not as shining. I've had only 4 consistently stable days, other days are a roller coaster struggle with side effects from the CO-1686 trial medication. Most critical, my white blood cell count is dropping below a threshold which dictates (per the clinical study) that my medication dosage must be reduced.  This decision will be made in the next few weeks.  My hope, with a medication reduction, is that side effects will relent and I gain more stable days. Downside, the medication is less effective at lower dosages and only two reductions are allowed to remain in the study. Without the medication my time will be short, but at this point it is simply a quality of life equation. Let's hope that a reduction can hold me steady, so I can get out my skates and play some pond hockey...who's in?