Friday, December 18, 2015

Day +137: Prepare to re-enter the Matrix

Days home: 128

The days and nights are quite colder, there are twinkle lights everywhere I turn. Holiday music plays at every gas station and photo cards with friendly faces are pouring in. What a season to be healthy and thankful.

If I told you that recovery was easy I would be lying. In all honesty it's been much harder than the transplant itself, and harder than even I expected. What I can tell you is that there is marked improvement from when I first got home, and that I am hopeful it will continue. We were never promised any improvement in symptom or ability, only the possibility of remission. We were told that improvements are a gift if we got I say blessings often for more gifts.

The Matrix
The matrix is my pre-transplant life. A full time job that I love that consumed the majority of hours in my on the horizon. On December 30th my hematologist will submit my return to work date for January. It will be an adjustment, but one I think is good for my brain. I was born to analyze, create, fix and collaborate. Socialization is a huge part of my personality as well. A girl can only organize so many closets and shelves of the home in a lifetime.

I missed my hair

Nerves have a mind of their own
There is still obvious damage in the right hand and weakness in the right leg and foot. Typing, writing, turning a key, holding a cup, grasping anything, picking up things, zippers, buttons, tying shoes.....all remain a challenge. I have tools to work around it in the event it never heals. I still struggle with patience with myself for being slow as molasses when using that hand. The  left side is about as close to normal as it will get.

Blood clots
The original one is still there, still causing me pain, and apparently not going anywhere. Even after an aspirin treatment he hasn't shrunk and has a new clot friend hanging out with him to keep him company. Not sure what is done in cases like this, but the Dr. is keeping an eye on it.

Tummy troubles
The stomach issues continue, with more bouts of the ER level stomach spasms. I see an upper GI doc later this month to discuss possible causes. There is concern that it could be my gallbladder, but I really need it not to be. That has the potential to require surgery.

Energy is up, stamina is up, attitude is up, appetite is up. Lots of positive changes that are a huge improvement over September. I am grateful that I had this time to heal and regroup.

Impacts from chemo can last up to 2 years.....joint pain, fatigue, muscle stiffness, decreased dexterity, hair loss (I'm losing the eyelashes and brows a second time as we speak), brain fog, short term memory loss, stomach issues, headaches....and on. It will be an adjustment to work through, especially once back at the office. My hope is that the time will go by faster and a year will be up before I know it, having been so busy with work and all.

I will head back to Chicago in February or March for my six mo the follow up. This testing will determine if I am in remission. It's an exciting concept.....but will be great to have in writing!

Thank you
I have said it before but I truly mean it. I am so grateful for the support that has carried me through. Texts, cards, emails, calls, Skype chats, video many smiles were created. You have no idea how dark some days were, and it was your kindness that brought a smile on those days. So THANK YOU for your kindness, thoughtfulness, humor, giving, charity, company, creativity.......from the bottom of my heart.

Happy Holidays & New Year
Whatever you celebrate, whomever you celebrate with and wherever you may be celebrating: have a wonderful Holiday Season and an even better (and safe)  New Year.   May 2016 be filled with love, laughter and good health for you and yours.
spoiler alert, if your hasn't come yet!

May your spirit be Merry & Bright,


  1. LOVE YOU!!!!!!!!!!!!!!!!!!!!! XO, Tang

  2. I do have to say thank you to you to for letting me be part of your journey. You have no idea how uplifting some of your messages have been especially in the darks days (or nights) when ts just difficulty to carry on. Sometimes I just need to hear from someone who is going through something similar, well not at all similar, but going through something at least. The blog groups I have found for CRPS are way to whiney for me. I like ones that are uplifting and ones that can laugh at the struggles like tying a shoe (no, I can't anymore), hold a pen or pencil (ah, gave that up years ago), had to cut my hair (can't tie it up anymore). Looking forward to having you back at work - especially now that we are all back of the same team, yoo-hoo!! You have and are doing great. Keep it up, we all love you. Looking forward to seeing over the holidays!

  3. It has been nothing short of a privilege to firstly have you come into my life - oceans and thousands of miles, at opposite ends of this amazing world we live in; forming the friendship that has evolved over that time and will continue to grow in the years to come; watching you go through the AHSCT in Chicago, wanting to be by your bedside but distance prevented that (hence the new "man" in your life, Beau - the next best thing to me being able to make you smile). Steph, your courage under "fire" is nothing short of inspirational, you're an amazing woman and I am so proud to call you my "California Girl" but I'm more proud to call you my friend. I love you to the moon and back and wish you the merriest of Christmases and the happiest of New Years. Remission be your future. Xxxxxx

  4. Steph, you are the most brave women I know, I am so happy we are BFF's you came into my life and it is like you were a sister from another mother. I hold our friendship deep in my heart for always and forever. You are the toughest chickie I know! You keep moving forward and I am so happy that you will be going back to the office that will be really good for you!!!! Wishing you a very Blessed Merry Christmas and I know 2016 is going to be awesome for you and a healthy one too!!! I love you so much Steph!!! ~Kathy R

  5. You are amazing. My oncologist and chemo doc have cleared me to return to work on Monday. My first post treatment scan isn't until late January but all signs are good.

    Looking forward to getting back to work and seeing you in the office in January.

    1. Looking forward to teaming up with you in Jan!

  6. Not sure why the prior comment says unknown - it's me Tim

  7. Your stamina Steph, is amazing!!!! Though stressful, it will be so refreshing for you to go back to work!!!!

    My warmest and best wishes!!!