Wednesday, April 6, 2016

Cytoxan The Anti-Hero -- Health Update

Today I feel like happy dancing on my keyboard. It was such a beautiful, sunny Seattle day filled with one awesome moment after another! First I woke up to find the documentary I filled months ago with Faith Counts released -- It was perfect, and already had over 30k views. Then I had an appointment with my Scleroderma Specialist from UCLA and it couldn't have gone better!  Lastly, to my disbelief, I was recognized in my physicians office by another patient who reads my blog!
Oh, and then I got a Raspberry Italian Soda on my way home so my day is now complete lol ;)

Today I saw my most favorite physician! He is the hard hitter who doesn't mess around and I love that. Thanks to him I am starting to regain control of my body, and in turn -- my life! Upon walking in he noticed the chart on the table the nurse had left, with out even picking it up he stated, "this isn't your chart," then left the room. A bit confused on how he knew, I waited. Upon his return with my chart he said, "I knew it wasn't yours because the other one wasn't thick enough!" haha See why he is my favorite?! Today we reviewed my latest lab results, lung function tests, and medication list. All my labs are right where they should be for chemotherapy which is great news. I had a nice low Lymphocyte count which means my immune system is being very well suppressed. Woohoo! Cytoxan is kicking Scleroderma butt! It's kind of an anti-hero though because it's kicking my butt too... Maybe I should start calling it The Punisher or Deadpool?! (Oops, my nerd is showing!)
He was also very pleased with my lung function increase, and skin score improvement. Medication wise, we will be adding a few new treatments and changing a few dosages as I seem to have acquired an allergic reaction to Cytoxan! He decided since I have made such vast improvements, and the fact that I am now having reactions, that we should lower the Cytoxan dose to half what it currently is, and add pre-meditative steroids to calm the possible effects of an allergic reaction -- he did prescribe an EpiPen just in case though. During my physically exam he said he could definitely see signs of reaction in places like my eyes and mouth, which is nuts because my last infusion was three weeks ago! I received some steroidal mouth paste and eye drops to help subside the effects.
This lower dosage will be AWESOME because that means my next 6 months of chemo won't be as hard on my body -- I may even get away with not puking my guts out for a week at this dose.
We also decided to add Massage Therapy to my bi-weekly Physical Therapy, which I am super pumped about. Who doesn't want to have something so heavily prescribed by their physician?! lol Overall it was a great appointment and he was very pleased to see such progress. I was told that I should see just as much improvement over the next 6 months as I have seen these past months. I cant even imagine where I will be by October! Hopefully I will be well enough to work or volunteer once a week somewhere.

After my appointment I headed up to the front desk to make a follow up appointment and to my surprise, a woman came up to me who I didn't recognize. She introduced herself and told me she recognized me from my blog; she was another Scleroderma patient waiting to see the same doctor! We chatted for about ten minutes; she was so sweet and expressed how my posts, and openness with my battle, was an inspiration to her -- it gave me goosebumps! I never dreamed I could be a household name for patients -- yet here I was being recognized by a stranger. My heart is so happy that I can spread awareness and bring strength for those battling Scleroderma! Talk about a celebrity moment ;) haha I felt super famous! We parted ways with a big hug and I haven't stopped smiling since!
Tuesday I go in for my 7th round of chemo. Not quite in the home stretch yet, but getting close! I am so happy to finally see the light at the end of this very long, dark tunnel I have been stuck in for the past 4 years. I honestly thought I would never find a drug that could reform my body to a more livable state, yet here I am eating yogurt and breathing on my own! It's the little things.


  1. You deserve all of these health improvements and the wonderful day you have had. Your faith video is gorgeous. Your willingness to share yourself, and even respond and listen to other people's stories helps in ways you cannot imagine. I used to often curse the internet, but because of things like your blog, and Inspire and other various forums, and the way it connects people of similar situations to help guide each other, I bless it now :).

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