Friday, February 11, 2011

Mysterious Dissapearing Post

Ghosts have invaded my blog.

They have hacked in here (do ghosts have to hack? or do they just kind of...pooof?) and have removed the last post I (thought) was posted here late last week and buried it back in my saved posts folder. Um, or maybe I hit 'save' instead of 'post' in an Ambien stupor. Let's go with the ghosts, mkay.

At any rate, I want to give the most important bit (the bit that I am mortified was NOT posted when I intended) of the haunted post while I work on editing (updating) the missing one. I wanted to write something to express my deep gratitude to everyone who came out to the Cupcakes and Rock n' Roll benefit two weekends ago. An especially large thank you to Sue and Brett Talley, John Faye, Brittany Rotondo,  Mariano Mattei and everyone (there are certainly many names I am missing) who attended,  organized, donated and helped P and I. The event was fantastically fun and we were so grateful to be able to be there. Seeing all of your faces there; friends, family, acquaintances, friends-of-friends, strangers, all rocking out and enjoying some fabulous cupcakes (THANK YOU to Philly Cupcakes, Lily Cavanah, Sue Talley- YUM!) was amazing. Gratitude, thankfulness, love...well, like I said that night, words can't explain it. Thank you, your generousity helped P and I book our flights and hotel for our trip back to Houston in March ( no worries! just a check up!). So much love to all of you.

Also, thank you, really, really thank you to you who reached out after my last (public) post. Thank you for reminding me that I'm not alone and for easing my fear about having those things out in the open. Love to you too, you opened the curtain and let a little light in. So, just, thank you.

In other very fast news, while I am feeling stronger and a bit sunnier (smiles are more common in this house as of late, it ain't all roses,'s a little better), my white cells have been dropping steadily. At the moment they are resting at .8 (that be LOW) and my ANC (infection fighting beasties) is at 700, meaning that I am on extra-super-duper-precautions at the moment (MASKS!). My onc at PENN (whom I ADORE) assures me that they do not think there is a problem with the graft (donor cells), rather, that I either have a stealthy virus or this is the result of one of the trillion meds I take daily. At the moment I'm feeling a little draggy from the med adjustments to try to figure out whats up, but I'll take draggy over failing graft. He also insisted that I "not be a hermit, just don't go out in crowds and WEAR A MASK", which I really appreciated. He understands where I've been emotionally lately (the dumps) and his advice really made me feel a little safer. Thanks Dr. Porter:)

Finally, I'm obsessed with this song and I really want to share it with you. Please excuse the weird YouTube video, I don't know how to post just a song.

Before I end this post, may I make a prayer/intention/energy/thoughts/love request for an acquaintance from Houston whom I have written about before: Sarah Chidgey. We met in the IV clinic the day we both had our CVCs placed and spent a long while talking. Sarah has stage 4 lung cancer and is in need of spiritual comfort and support now. We are nearly the same age. I will not presume to write about her situation here because, well, it (selfishly) makes my heart ache too much. Her (very powerful) blog can be found here:

Much love, my dear, icy, windy, snowy, omgthelightisreturning Philly and beyond.


  1. Love Colin Hay and this song especially. Someone said to me this week "even if you are suffering, love life. Because that's all there really is."

  2. This song hit me deeply. Thank you for sharing it. I found your blog on planet cancer. I am "skydiver" on PC. you are a very good writer and your honesty is inspiring. thank you :-)