Thursday, December 6, 2018

Looking for a Grand Slam at the Bottom of the 9th!

Some of you who follow this blog may wonder what has been happening in my life.
The reason that I have not written is because since I wrote my previous blog cancer schmantzer has delivered a bunch of not so pleasant gut punches that I am still trying to figure out. More pointedly, the month of November seemed like one long, kick in the pants. On November 1st, I ended up in the hospital with a bowel blockage, and then later in the month I spent another week in the hospital with another one. Apparently, a tumor has been causing the blockages.

My care team decided to resolve the issue conservatively because that seemed the
safest option. While being hooked up to PICC lines and IVs is not my idea of a good time,
if my docs thought that was my best option, then I was all in. Since I like to be pro-active,
I asked if they could move my next chemo appointment sooner to shrink the tumor
(if possible) rather than to wait for my next trip to the ER. Whether this will work or not is largely
dependent on whether I can gain some of the weight that I lost while being hospitalized, and part
is dependent on whether we can keep the tumor at bay.

Trying to sort out what all of this means has been mind-boggling at best. My docs are looking
at all of my options to find the best treatment. My palliative care team is talking me through options so that if those treatments don’t work, my end of life care will consist of my choices about what is acceptable and what isn't.  The week before Thanksgiving, Donna and I spoke with our rector, and he gave us a road map of what my next steps are. Thus, I have been spending a lot of time making end of life decisions, and I have enlisted my family and friends to help me do some of the research so that I can make the best decisions. While this has been emotionally draining and exhausting, the good news is that if I make a miraculous recovery, that would be great. If not, all of this will be done, and I won't have left Donna and David with the burden of making these decisions.

With Donna at the NPE Conference in Indy in October

With David on Mothers' Day

I have always been more than a little introspective, but this has caused me to be even more so. During a discussion with a friend, I remember telling her about the last time that I saw my mother before she died. As my mom and I sat and talked, I asked her if she had any regrets. Even though I knew that she had had her share of heartaches, she simply said this: “No, I have had a good life.”

Remembering her words, for a moment I lost my usual stoicism because I realized that, like her, I have had a good life. That does not mean that I have had a life without heartache and pain, but those things pale in comparison to all of the great stuff that has happened in my life. I have had the privilege of having an amazing family and amazing friends. I have had the privilege of standing up for what I believe. I have lived, loved, laughed, and followed my bliss. What more could I ask?

On my mom’s birthday several months after her death, I decided that David and I needed to commemorate this milestone day. I bought a pink and silver mylar balloon, and we wrote something pithy on it, and along with my friend Judith, we decided to launch the balloon with a few words and a prayer.
When we went out into the front yard, there were too many trees, so we decided that we would go over to the baseball field by the neighborhood middle school, say a few words, and then launch the balloon. So we did. Much to my dismay, as we launched the balloon, it rocketed into the air at warp speed, and then the balloon disappeared. Of course, I was disappointed at this EPIC FAIL!

As we were getting ready to leave the field, we looked up into the clouds overhead, and we saw the reflection of the sun on the balloon, which was blinking brightly like a beacon....and I knew that was my mom, in her own way, telling me everything would be okay....and I knew that it would be.

As I think about those whom I love, I want them to know that everything will be okay. I may not be present physically, but I will be nudging you to do better, to be better, to be kind, to be joyful, and to laugh at yourself and the world around you.

Despite all of the crap sandwiches we get served in this life, this is a wonderful world, and we need to be mindful of our part in making it so.

For those of you who are neither Cubs’ nor baseball fans, I am including this picture of rookie David Bote’s walk off grand slam in the bottom of the 9th during the playoffs. While a grand slam may not be in my playbook, I am hoping for the best but preparing for whatever lies ahead.

Whether it is taking a kid to the zoo or to Zesto for ice cream, whether it is writing a letter to your legislators, whether it is running for office, whether it is supporting your favorite charity, DO IT!
Monday morning quarterbacks are of little use to anyone.
Whatever you do, live your life to the fullest. Once again, do what matters to you.


  1. Bote's grand slam is a great goal. Personally, I think you can duplicate it. Stay in the game...focus on each pitch.

    Aren't metaphors awesome :)

  2. Compassion and Choices (national organization) is the best resource for planning end of life care (if you need it). I recommend it from personal experience and out of concern for you.

  3. I sincerely hope that you are aware of all the love you have generated in others. Love to share and love to receive openly and with gratitude.
    We sat and ate lunch together one day several years ago at an NPE conference. I remember it as a moment of smiling warmth and gentle good wishes. Yes, love.

  4. I would expect nothing less from you than encouraging words for us!!. Your influence has changed me.I am a better person because of you. I think better and I care more. Thankyou. I won't let you down. You have always been one. the clients I most look forward to....that has nothing to do with hair. I'm keeping a big part of you.

  5. I sat at the same table when NPE honored you in Indianapolis. We did not speak, but your amazing courage and praise for others have given me energy and heart to keep fight for sanity in education. I have been through the end of life decisions. They are necessary and a blessing. They offer big-time closure even as hope always remains. Thank you for this wonderful post among many others.

  6. Sending love your way, Phyllis! You have shared so much love and passion with others to guide those of us who believe in the ideals you continue to champion. Take care, friend! (Hugs)

  7. Thank you, Phyllis, for the ever insightful words. You are an amazing person. I am so sorry we lost touch with each other.

  8. Thank you, for your inspiring words. Getting a reminder about the importance of pushing for justice, supporting students and connecting with our family is welcome. Enjoyed your speech at NPE this year. Sending love and all the best to you.

  9. Phyllis, you continue to be a teacher. I remember the first conversation we had, which resulted in a meeting near Plainfield. I was impressed with you then, and even more impressed with you now. Your advocacy for public education is passionate and endless. Anyone who has had the pleasure of working with you is better for the experience. Grand slams happen all of the time. You've got this.

  10. Still teaching us all these years later. Sending you love.

  11. Your poise under the pressure of the unknown is amazing, Phyllis. Though I have wateched you mainly from a distance or through the eyes of my wife, do not ever underestimate the positive influence you have made on me through your love of the battle, the chase, the victories when they seem so evasive! Your time is now to make the penultimnate impact, and you have hit a grand slam in fully utilizing this most unfortunate platform. Extra innings here we come......