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 it....so 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 weeks......is 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.

Overall
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.


Checkups
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 messages.......so 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,
Steph