Sunday, December 2, 2012

Partially Back

Hi Friends! I'm on limited technology. And I have to say that Dan is truly amazing. He can read me so well. In my downtime I've been able to focus on resting. I started a new routine in the mornings, I wake up and pick up the house, make the bed, do any random dishes from Dan's breakfast and I've even been doing small loads of laundry. I do chores for one hour, then put the kettle on and I start stretching. I make a tea, as it cools I continue to stretch and do floor exercises.

I've been able to paint two large canvases for my niece and nephew, which is VERY exciting! I lay in bed every day from 1-3, sometimes napping, other times just laying with my eyes closed (usually pinned by my cat). Dan has been joining me on evening walks. For the first time in weeks Danny had Saturday off, so yesterday morning Dan and I walked, and jogged from our house down and around the lake, then home. The entire trip was about 4 miles. I slogged a total of 1 mile (not consistently).

This morning Dan took me to the gym for the first time since the surgery. We spent a little under an hour, which is fantastic! Heading to the gym is a very big deal because the noise of the loud music, voices, weights clanging - the smells of cleaners, the bleach and vibrations of the cardio machines can be overwhelming at times, triggering auras. I have always been able to get out of the gym before it has turned into a seizure but it's still very scary. Today though, it was a complete success! We worked out on the cardio machine, we did weights and I even went into the woman's locker room to weigh myself without Dan's supervision (I can be overwhelmed at times doing things alone without Dan or someone in case of a seizure).

I feel like I'm focusing on resting, and utilizing my energy for physical activity which is integral for my improvement. I appreciate your patience with emails, texts, phone calls and Facebook stuff. I'm still not back, and at this point in emails alone I have over 75+ legitimate emails that I have yet to respond to. I love all of my friends and family so much, and I'm sorry I'm not a good friend these days. I don't know how long it's going to take me to get caught up, and I'm sorry for that! It's probably going to take a very long time. I probably also won't be up for social stuff, even walks or runs for a bit. It's amazing how tired I am after a normal day, for now I just need to remember that I'm healing and I need to get into a normal routine, take it easy, and as soon as I'm able to get my life semi-back to the way it was, I can start getting social :) I think, initially, I jumped out of the gate running and it was a mistake. I'm fixing it though :)

I love you all, so much. I'm sorry to those of you who I have yet email back, etc. I appreciate the patience.

Tuesday afternoon I have a phone call with my NYC doctor. He will review my surgery notes, my blood work, and my overall health to see if I'm a viable candidate for dendritic cell therapy in Germany. I'm excited, and nervous. My stomach is full of butterflies. Not much rest for the weary :)

This therapy could help clean up residual tumor (the invisible cells) and teach my body to recognize tumor cells as the enemy for the future. To train my body to seek out and rid my body of cancer cells would be AWESOME!! Fingers crossed that the appointment goes well. I'm also grateful that I'm able to discuss my situation over the phone with my doctor, that I don't have to travel. Lots to be thankful about.


  1. Glad to hear you are doing a bit better. Don't worry about catching up on everything. I am sure that everyone just wants you to do what you need to for your health. We all just want you to get your energy back as much as you can, get healthy, and enjoy yourself. You are amazing! I myself, don't really do much besides normal stuff because it is still too exhausting for my brain a year after surgery. You make me look bad! :) Just kidding. Hang in there, girlie. You are doing great, and you will continue to surprise yourself. It's a long, hard road but you have lots of people who care about you and are praying for you. Jess

  2. Hi Jess,
    No need to respond to any of us. We feel your appreciation and want you to feel our get-well thoughts. See? Feeling is all we need.
    Have a great restful week kiddo.

  3. Jess, So happy your taking your time to find balance, rest and heal! Love and HUGS! Mel

  4. Jess, so glad to hear things are improving for you and that you and Danny have been able to get out and about.

    Over the TG holiday I read this article and thought it might interest you:

    It's about an Italian artist that has a brain tumor and he has posted his medical records online in order to start conversations w/ anyone and everyone in order to find a cure/treatment.

    You two take care.


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