Wednesday, January 31, 2018

Healing with Intention is Working

I am delighted to report that my misery is much less than it was a few days ago, and it continues to decrease daily.  My guts CAN move food from start to finish, albeit SLOWLY, and I can be patient with the process.  Thank you so much for all of your positive energy.  I am drenching myself in your golden light from the universe, I assure you.  I am painting my guts up and down with yellow the yellow healing light, I am planting golden flowers with it at my ileal-cecal junction, and I am growing golden stars of healing light all around Lloyd's carcass. I spend most hours of most days doing this.  Thank you. 

I'm still eating pretty much only simple, liquidy foods until things stabilize (I have no timeline or expectation for that).  Lots of smoothies and onion soup (I love caramelized onions, so I just whip some up and add some vegetarian broth).  Today I cheated a bit because my friend S recently shared a recipe for Irish Brown Bread, which made me miss Ireland quite badly, so I made a loaf and slathered a piece in butter and ate it.  I made it with bran and oats instead of wheat, so hopefully my guts won't mind.  They haven't yet.  My brain and tummy were grateful--it was soooo tasty.  But other than that--mostly liquids for me!  You might be wondering where I'm getting my protein, or how I'm getting full?  Well, I've got some protein powder that I sometimes add to the smoothies, or I add cashews (the Ninja blender can handle cashews!  It's so cool!), or avocado, or peanut butter.  I haven't exactly figured it all out yet.  Right now my goals are to not to get bloated again and to not be hungry--so far, goals achieved!  I am meeting with an oncological nutritionist on Friday (I'm super excited!  I know her--she's married to a grad student in my bestie's lab!) to get her tips on increasing peristalsis, getting enough nutrition, and how I'll know when I can eat other foods without them getting stuck.  In other words, when can the hbomb have a burrito?  ;) 

And, further items for the Bliss List:

11.  My co-workers, near and far

My job is amazing for numerous reasons, many of which are the beautiful people I work with.  My work has a program that allows me (and other ill people who enroll) to continue to be paid even though I ran out of paid time off weeks ago, and this program is possible because other employees donate their hard-earned time off to me to use.  I enrolled in the program, and in ONE DAY my colleagues donated all of the paid time off that I've requested so far.  These are their hard-earned VACATION days, not their sick days.  Thanks to their generosity, I will continue to be paid while I calcify and minimize Lloyd, reduce my brain swelling, heal my guts, and regain my strength.  I am deeply moved by everyone's generosity, and my family is so, so grateful.  This is a significant potential source of stress for most families, and I can't emphasize enough how grateful we are to not have to worry about this working momma's paycheck.  Thank you so much, co-workers.  Thank you.  I love you all so much. 

12.  N, friend, postdoc, scientist, warrior, Crokinole champion, my beloved Canadian

Today N sent me the most wonderful message, and I want to share part of it with you because she's so totally right on, and henceforth I'm going to take the message to heart.  Here it is:

I feel like you started your treatment off on the wrong foot when the doctor indicated that you should expect a week of down time to recover.  Clearly that was never an accurate expectation, and so we need a do-over so that there won't be some small part of you that is clinging to that story. 
 I thought it might be helpful to literally visualize yourself talking to the doctor, before the radiation ever took place.  And picture the doctor saying: "So... the radiation?  That's the EASY part.  The hard part is convincing yourself to do only the bare essentials for the next several weeks so that your body can divert all of its blood supply and efforts to your brain. Destroying a tumor is a 4-week process where you will look like there is nothing going on, when in reality you are working so hard that you may only have enough energy left to hang out with your kids and do some light exercises to make yourself feel better." 
I see it as similar to the first trimester of pregnancy when nothing looks different but actually your body is doubling its blood supply and making you completely exhausted.  You are doing the work right now, and you are doing fantastic.
Isn't that wonderful?  She's so right!  THANK YOU for these words, darling.  I love you.

12.  MIL, today specifically

I'm an evacuee!  My youngest came home sick from school today with a mild fever.  I put a message in MyChart to let Dr. Oncologist know and to offer to get out of the house, and she said that yes I should get out of the house and not return until everyone is healthy and the house is "disinfected".  My amazing MIL, who lives just a few blocks away, picked me up before dinner and stole me away to her house.  I packed my Ninja and special foods, the laptop, my book, comfy clothes, and yoga mat.  I don't know how long my banishment will last, but I will be comfy here and grateful to avoid a respiratory infection!  Thank you so much, MIL! 


  1. Love all of this and mostly YOU <3 Great job on your healing. I'm in awe of your patience and grace. Xoxo

    1. Thanks sis! I love you SO much! You've been so helpful to me these past few weeks!!!

  2. Excerpt from Heather's Log of the Family Vacation to Yellowstone (August 10, 1994 - Day 8)

    2:40 - Our brakes aren't working properly, so we're going to a brake shop in this town - Ashton, ID. The siblings and I already visited the library. It was pitiful. Now dad is taking off the trailer/camper. We're at Buck's Auto Repair.

    4:00 - Hello again! Here's the scoop: The brake pads were bad, so we got them fixed at Buck's. A good deal, I might add. We toured the town, talked to the people who managed the Ashton, ID branch of True Value. That was interesting. We got a malt and left. I got an Oreo one. Mmmmm good!!! Bye now.

    4:29 - These Tetons are pretty. The 3 main ones have snow on them. One juts way above all the rest. Gorgeous!

    5:19 - We need a campground! Yes, it's that time again. The first one we stopped at just a few minutes ago. 28 bucks. Ouch! We're still truckin'. Our camper's marching on!

    5:33 - There are cows on the highway. A mom and baby. The baby was nursing. Cool.

  3. I forgot about the Yellowstone vacation excerpts, dad!!! So fun!!!