Notes From Supergirl

My Diary from the Trenches

Day 240

January27

I have been meaning to sit down and write for a few days now but the snow has completely detoured most of my well-meaning intentions. It seems my kids are only going to school 2-3 days a week lately between holidays and snow. I actually got a snow day myself today when the plow had not gotten to the street by the time I was supposed to get to the hospital for blood work. I really would have liked to go just to have a better idea of whether or not I am starting Round 2 of chemo on Monday, but now I won’t know until literally Monday morning. I will go in for blood work and if things are where they need to be I will start chemo then, otherwise I will be delayed again or potentially pulled off the study. They said not to think to that extreme the last time I went in (last week) so I’m not all too worried about it. The issue is just that my platelets weren’t high enough.

The snow is definitely stressing me out. Last night we lost our power and were hovered in sleeping bags in front of the fire all night. It was actually a really wonderful family moment, yet in the back of my mind I was initially thinking about how I was trapped in my house and what if I had to get to the hospital? I know it was silly, but it is funny how your mindset changes after you go through things. This morning I was out to shovel the driveway as fast as I could because I didn’t wanted to be “trapped.” We are scheduled for snow again next week and I am already wondering if I’ll have to sleep in a hotel for 3 nights while I go for chemo just so I make sure I can get there in the morning. So dear snow, please go away! And as my friend Heather pointed out, let’s all keep our fingers-crossed that the groundhog does not see his shadow next week.

In other news, I went to New York last week which was my first escape from home in almost a year. We had an amazing time. We went to see Blue Man Group and I was randomly picked out of the audience to go on stage. When I saw them eying me up, the only thing going through my head was “oh god, don’t pick me because what if my wig comes off on stage in front of all these people?!?!” It turns out Brian and my cousin were thinking the same thing. Fortunately the powers that be were on my side that day and the skit I was doing didn’t involve any hair pulling. It was a really fun scene that I got to be very playful in – or as my cousin said, “cheeky” – and I have to say, it was one of the most fun, memorable moments of my life. I loved it. Below is the photo they took as we walked off stage …

They obviously had no idea who they pulled on stage or how much it meant to them. I’m thinking of writing them a letter to let them know.

This weekend I am so excited for two major events. Saturday, Brian and I were invited to the Ulman Fund’s Blue Jean Ball as a guest of Brian, one of their directors and someone who has become a great supporter and friend. Sunday, Roseann, my fabulous triathlete oncology nurse, is hosting an open house for The Healing House, an idea that she and I conceived of while I was in the hospital. You can read more about the event here:

http://www.teaminspiration.org/index-4.html

I can speak for myself, and probably a little for Roseann, when I say that it is very surreal that this event is taking place on Sunday. When we first talked about it, the idea seemed so distant and almost fanciful, but through Roseann’s hard work, diligence and good fortune of connecting with so many wonderful people, it is all becoming very real. I will keep you posted on all of this.

Lastly, I wanted to share a video I watched today by a writer name Bruce Feiler. He wrote a book called “Walking the Bible,” which you may have heard of. A few years after publishing that he was diagnosed with a very rare form of cancer that was discovered in much the same way mine was – “a routine doctor’s visit and a routine blood test showed one blood level was off.” He had two young twin daughters the same age as my oldest son (four at the time) and he and was came up with the idea of creating a “council of dads” in case something should happen to him. Although the video only speaks about the council for a brief time, the reason it was so powerful to me is because he talks about how cancer has the power to transform friendships. And the words he used to describe the experience of having people visit him and the conversations that took place completely mirrors my own sentiments, although he explains in such an eloquent way that I haven’t been able to. Below is a quote I transcribed. If you don’t have time to watch the video, I hope that anyone reading this who is going through this experience or supporting someone fighting their own battle will understand that the “beautiful gift wrapped in the ugly package” of cancer is truly the bonds we form with those who join us on the journey.

“Cancer is a passport to intimacy. It is an invitation — to enter the most vital arenas of human life, the most sensitive and the most frightening. The ones we never want to go to but when we do go there we feel incredibly transformed.” – Bruce Feiler

He describes how the treatment transformed him physically into something less human. He lost 15 pounds, he lost his hair, he became a ghost. He expected that those around him would back away, yet the worse he got, the closer they came. Having lived through this very experience, I can’t even talk about this without crying because it is the overwhelming power of the love and support that people gave me at those very worst times that pulled me through and fill me an unexplainable amount of joy every single day. If there is one thing I have learned from this experience, as I know you all hear me say over and over, never let a day go without fully sharing love and friendship. In the end it is the only thing that matters.

Okay, I’m done with my lecture for today. But seriously, if you have a moment for a little warm cry, please watch the video …

3 Comments to

“Day 240”

  1. Avatar January 28th, 2011 at 3:50 pm Heather Says:

    I will watch this video soon. I just watched an “inspirational” video about Type 1 Diabetes. I’m good with the waterworks for a few days. Amazing how far you’ve come, my friend. So excited for you!


  2. Avatar January 28th, 2011 at 8:41 pm Chip Says:

    Jess -

    If the snow ever traps you and you need to get out for a trip to the hospital or anywhere else, you call me and I will come get you in my trusty old Jeep.

    Chip


  3. Avatar January 28th, 2011 at 9:13 pm martha Says:

    The video is amazing. Thank you for putting life in perspective. I’m glad you had a great time in NYC. Maybe Rangeley ME will be your next destination?! Love, Martha