Notes From Supergirl

My Diary from the Trenches

Day 569

December19

Generally speaking today was going well until … I took a shower and all of my hair fell out! Just like that, it all fell out, no easing into it, just massive clumps of hair. I was really okay with it. I’m ready to try something new, again ;) But that’s not the bad part of the day. The bad part is that the University Network is now blocking me from getting on Skype saying that they do not support that kind of “internet telephony” application. I wrote them a fairly emotional email explaining that I am the mother of two young children on a unit that does not allow children to visit and my only way of visually communicating them during my one-month stay is over Skype! If/when they respond, I would also like an explanation for why I only have access to the internet for 10-15 minute intervals randomly throughout the day. How could they not understand how critical it is for patients to have access to the outside world? Especially to their families?

At least I can talk to them on the phone. That is the only saving grace. They did get to see me briefly tonight before things got cut off. So they got to see my hair which is a hot mess right now. I am proud to say that Ty thought I looked like a rock star :) It should all be gone tomorrow, but for now I have stripes of hair and baldness going from the front of my head to the back. Sort of like 3 Mohawks. Very odd, but interesting. There’s no salvaging anything. And like I said, I’m really not that upset about. it My bigger concern is keeping my eyebrows and lashes. I kept those through my first two chemos but lost them on the third. When you have the wig on and you still have your own brows and lashes, it’s really not that noticeable that anything is different. But if I lose my lashes, the fake lashes were dreadful and my little lashes are basically white blond so there’s just nothing there. Fortunately they grow in fairly quickly – and I won’t be going anywhere anyways. My focus all along has been that I will make my big debut back to life in late spring, probably May sometime. That would be the soonest I might be cleared of a mask and by that time my hair will have grown in enough that it just looks like a really short cut.

Alright, enough about my hair. In the TMI/Gory Details department I haven’t gone to the bathroom in 3 days. Feeling pretty gross. I’m downing the laxatives and dinner tonight was high fiber cereal followed by a bean burrito. Apparently my pain killer has this effect. Heather, I hope you’re happy that I’m sharing. Only for you my friend!

I got a little run in on the treadmill today and then did my light and easy ride on the bike. I downloaded Tina Fey’s Bossypants book and it is hilarious. It’s a fun way to pass the time.

Well it’s bedtime for me. Did I mention my doctor came to visit me a second time this afternoon? I thought something was wrong but he was just stopping by to see how I was feeling. He really is awesome. I feel like he’s another gift on this whole journey. Someone who is genuinely interested in taking care of me. How lucky am I?

Alright, I’m drifting off hoping for a Christmas miracle  keeping my eyelashes. A special thank you to my support team in Montreal. Much love and appreciation! Good night everyone!

3 Comments to

“Day 569”

  1. Avatar December 20th, 2011 at 4:52 pm mina Says:

    Jess,

    If you can use the hospital’s wifi, can you use an ipod touch or ipad2 to connect with the kids at home using FaceTime?

    Hang in there….. I continue to send positive thoughts your way.

    Love,
    Mina


  2. Avatar December 20th, 2011 at 7:12 pm martha Says:

    Bald is beautiful because it is who you are, not how you look. We love you, and continue to pray for the end of this journey. See you next week! Love, Bob & Martha


  3. Avatar December 20th, 2011 at 7:16 pm paul Says:

    Hello Jess,
    So it’s been 3 or 4 days without going potty – WOW! I know what that’s like. Have I ever told you about the time I couldn’t sh…..? I’m sure I shared that with you so I won’t go there again. (you’re welcome) Strange how you pore your guts out and all I hear is “haven’t gone to the bathroom for 3 days.”
    I would love to come see you and your new hair style, but I’ve been sick for a week now. Maybe soon??
    I can just see you sitting in your room right now though, with your 3 Mohawk hairdo, bloated tiny belly, bean burrito in one hand fist full of laxatives in the other, just praying for the fiber cereal to kick in… you’re right, you are a hot mess!

    Love ya,

    Paul