Drugs and Hugs: That's What This One Turned Out to Be

I wasn't feeling great this morning but Starbucks in
front of the Rockefeller Center tree and ice
rink with my love?!?! Pinch me!!

I think blogging is harder than I thought it would be! So one of my "resolutions" is to write more often. Turns out I don't have any other resolutions so I guess it's go time!



So the holiday season, yeah, wow. It was all the things. And all the things really did make it so great. I'm feeling nostalgic about it for sure, but admittedly I'm drugged today...but really! truly, we did have such special times this year with our families, our friends and each other. I absolutely do give credit to our increased appreciation of love and life for amp'ing up my crush on Christmas...ohhh, and the trip to New York City, which was...just downright luxurious. 

And in a our mash-up we don't get to spend everyday with our kiddos on winter break, so we still have parenting energy! Looking forward to expending the heck out of that this weekend.


Here is an update on my health.
I completed my Whole Brain Radiation Therapy (WBRT) on 12/22. That is the plan for the brain because most chemotherapy drugs can't reach the brain.

WBRT does cause hair thinning because the hair follicles have nowhere to hide, they just get tired and give up. In addition, the clinical trial drug can also cause hair thinning.  My hair followed direction like a champ and is almost completely gone. Wig consultation to the rescue and I should be sporting a super-cute honey blond pixie cut in about 10 days. Hats in the meantime.

I will have another MRI in February to take a look at how well we did.

Overall I've felt less awesome than I've hoped. I have been on a steroid since original diagnosis to combat the side effects of brain swelling. The radiation will have reduced the size of the brain lesions that were causing the original swelling, but radiation also can cause swelling so I stayed on the steroid. The steroid causes some of its own side effects - mainly extremely reduced muscle tone in my legs as evident when attempting to go up stairs, getting up from a crouched position and getting in my Pilot. So, there was a decent amount of desire to eventually get off the steroid. And then there was the taper-schedule. Which is about the time that I realized how AMAZING the steroid was making me feel. So I struggled a bit over the holidays trying to find a balance between coming off the steroid and standing upright.

Fortunately we were able to consult with the Froedtert team and have a plan. The culprit might be the med I'm taking to protect the blood vessels in my brain. Radiation can alter brain activity (reduction in short term memory, decision making, filtering...) but the risk would be low for me since I'm younger and a non-smoker. I was taking it anyway, because, you know, why not. But cost-benefit analysis at this point said I'd taper that down in favor of feeling good. This is great because, later, when I "accidentally" utter unfiltered commentary, I can blame it on this ;)

Today I had an outpatient procedure to put a medi-port in (again) which is a little device that allows my cancer drugs to be mainlined without the hassle of always having to find a vein for the I.V.

We'll meet with our medical oncologist on Tuesday to get the plan for chemotherapy - which is how we will address the lesions in my lung. I know a little bit about it and know that I'll start the second week in January. But we'll get the whole scoop on Tuesday.

And I have only TEN MORE DAYS of my clinical trial drug - the circus peanuts. That is awesome because as excited as I am to be on it I will NOT at all miss taking those 4 huge pills everyday.

Thank you so much everyone for your continued support and well wishes. We are sending well wishes to all of you as well as we enter the greyness and coldness of winter. It can be HARSH on spirit and body, we all know! So reach out and hug your friends and loved ones - even acquaintances might need a hug (maybe ask first? or not.) - it will warm your hearts and warm you both up! And for loved ones I recently read that you should stand as close together as possible and hold your hugs for 20 seconds. This amount of time allows all the "happy stuff" to percolate and result in a real feeling of connection that we aren't going to get with a quick little A-frame number. #hug20.

Happy 2015 fabulous people!!