Blog, Smlog - so many days have gone by without an update - but so much has been going on.
Monday after the benefit concert was a total wash for me - I went for radiation and was feeling really badly - nauseous and so "out of it" tired! My knight in shining red car gave me transport to the hospital while bearing gifts from his land of plenty (COSTCO) - some fur-lined gloves (my nice leather ones weren't cutting it) and healthy nuts and fruit from the Costco land! He is my hero…
I was invited to join some friends for brunch in my apartment building and had planned to cook a vegetarian friendly Ina Garten Potato Egg Strata for the event (hence the grocery store run on Sunday before the fundraiser). I could barely lift my head to get back to my apartment after radiation - so I knew the cooking and joining the party were NOT going to happen. I fell straight into bed and didn't wake up until late in the evening.
I was feeling better and determined to put together this nice egg casserole - so I decided to just power ahead in my PJ's and at least have a pan in the fridge of something I could eat for a few days. But living in hotels and corporate apartments doesn't allow for all things necessary to prepare food! I chopped raw potatoes with a dull knife and bleeding fingers - then tried my best to "shred" the wonderful Gruyere cheese I purchased without a grater. I was determined, I tell you! Maybe the word is stubborn - but those of you who know me well will agree.
I finally finished and cooked the strata and it was beautiful and bubbly!
Egg Potato Strata with Gruyere, Ricotta, and fresh basil
Yummy eggy cheesy goodness!
After the bleeding and chopping difficulty - I decided to keep the dish to myself and I can't tell you how
wonderful it was to wake up the next morning and have these leftovers to eat for breakfast!
I barely remember Tuesday - but after a full day of sleep and quiet - I was much more myself for the show that evening. Wednesday was a two show day - plus my daily RAD and a visit with the doctor.
The doc said I was doing well - he feels that I'm not having too much difficulty with the brain swelling - and he may have lowered the dose of steroids at this point - I was still having enough side effects to continue as we were doing. I tried one last effort to try and get him to double up on my last dose of radiation so that I would be done before Christmas - but he refused again. He said that doing that might push me over the edge that we are trying to avoid with too much swelling and it would not be advisable!
So, it will be Christmas in Chicago - in the snow - with my amazing family coming out to join me! I love them so very much and I know my mom could use some Dina hugs to make her feel better!
The hair is ugly and coming out in chunks - rolling over in my bed was filling my mouth with hair and I would gag like a cat with a hairball! CHHHHAAAA…. CHHHAA. So it's time to let it go - possibly for the last time. That is very hard for me - I know it sounds glamourous to think of always wearing wigs but it can be hot and itchy and uncomfortable…. not a horrible thing - but one that makes me feel "less human" and different than just being normal like everyone else.
We went to the top of the Trump building for a birthday celebration for Laurel Harris - our Elphaba standby. The view was AMAZING - what a beautiful place.
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End of the night on the elevator |
The wig people at Wicked are my hero's - they have ordered a new Emerald City wig/hat combo that will be easier for me to hold my bald head…. They have to get it OK'd by the design team because it is not part of the original design for the show - but they are willing to find a good solution! They have been so amazingly supportive and determined to find a beautiful alternative for me.
Tonight was the official "shaving" of my head - it is worse to have a sparse head with "zombie" worthy hair chunks than it is to have no hair at all (believe me, I've been through this before!) Even walking through the hospital corridors with the "Cancer Victim" hairstyle warrants sad looks and pity looks from guests as well as practitioners - I really don't like to receive that look from people…
Most everyone on the show now knows something about what I'm going through - and I've been getting the "pity" looks and less fun and games from the crew and cast… That's what I tried to avoid for so long - I may be going through some major shit - but I still want to live my life as usual - having fun - playing pranks with everyone - just being normal! I hope it gets back to that again soon.
My dear friend Pamela did the honors with the "shaving". She is a certified dog groomer - so I knew she would be perfect for the job!
Many cast members joined us in the ladies restroom to cheer and enjoy! Luckily, I think I have a pretty good head for being bald - so I'm not too scary or freaky looking. I threw on one of my new wigs (I have a cheap, fun one called Rhianna) then pulled the wig off to show the others the new Dinah Benet!
I was upbeat and cheerful - but a kiss to the head, or hug from someone dear still brought out surprising tears and grateful hugs. You just don't know how things will affect you until you walk through it - I'm doing my best to just go with each new step - and believe it or not - I still feel so fortunate to be able to do the things I get to do in my life! What a gift - who gets to shave their head? Who gets to see what their head looks like without hair? It's kind of empowering!
I'm feeling pretty darn good physically - and even though I will be hit with another NAPALM chemo on monday - I've been able to manage my side effects pretty well and don't expect to by taken down by all of it anytime soon!