Tuesday, October 6, 2015

Day +63: Joint pain and awe-inspiring stories

Days home: 52 (as of Monday)

This last weeks biggest hurdle was joint pain and balance. Every joint from my neck to my ankles hurt, like they had all been crushed or twisted out of sorts. I have heard of post chemo joint pain, didn't realize it can come on like the bone pain did. It has subsided some, which is nice of it.

The noggin
I pulled out the blond wig again, determined to make it looks somewhat decent for an outing. I think I accomplished it. Just needed some curls.....

Chad and I went out to dinner. I had salmon. And polenta. And hair (albeit fake). It was so nice to feel like I was part of society again. Hooray for celebrating my 60 days illness free! (Minus the brief stay in the ER that one time, and the random asthma issue LOL). However I can say no major infections or fever. Thanks to my dear friends who although wanted to follow through, on a few occasions cancelled plans due to sick kiddos at home.

Blue is still a fave and is fun to wear. I'm normally just in a beanie

PT & Labs
Outpatient PT starts Wednesday. I ha e a feeling it's going to be torture, and yet I am looking forward to it. I have been good about doing my balance exercises from my in-home therapist. However balance is still a big challenge. Also have thrown in an intense core workout to assist with balance. Completed week one, hoping to see some impact in the weeks ahead. Most aqua therapy pools in the county leverage public gym pools which are off limits, so it's just physical therapy .....but anything will help.

Took labs today. I now go every two weeks. So far numbers have been good. There can be a delayed drop in WBC following Rituxan (chemo), so I anxiously await my results to see if I need to go back into "bubble mode"....but so far so good.

In Awe
Today I am giving a shout out to a girl who is awe inspiring. I met her mother through our support group. They are both in the super hero league. Her name is Madalyn and she heads to Chicago this week for this treatment. She is a youngin' of only 18 with a very rare auto immune disease called AAG. This attacks the receptors of autonomic ganglia in the autoimmune system. It's rare, complex and both the disease and treatment make her very ill. This girl has been through hell and back and yet is always smiling. If HSCT provides remission for this disease it's a major medical milestone. Her mother started a non-profit to help families navigate the medical system when a child has a rare disorder.

If you have an extra minute, please go to the link below and vote for "It Takes Guts":
Oh, and tell a friend. Please and thank you.


This grant money could go to amazing awareness and education campaigns in 2016.

You can learn more about AAG here: http://www.rarediseasesnetwork.org/ardcrc/patients/learnmore/AAG/

Got this card from my work team last week. the irony is that our mascot is a turtle and those are foundation colors.....

Keep on keeping on. Practice patience. Let it be. (My latest head chants). There are chores I still find mindless, boring and dreadful. Yet I am grateful that little by little I have the energy/strength/stamina to do them. Someone posted this the other day, and it really spoke to me.

Hope you are all well. Have a great week!!


  1. Its a keep on, keeping on! There is comfort in the boring. I remember how excited I was when I could wipe my own ass for the first time! Now that was an accomplishment! lol!! I love hearing about your progress! Each day, little by little you are getting. At some point you'll be back at work, like the rest of us slaves!!! Looking forward to Friday.....happy to bring to you if you aren't up to going out...either just let me know! Love ya! Virtual hugs!

  2. Girl, dont rush the healing. I went back to work at 4 months post transplant and wished I would have waited and milked it a little longer :) I miss those boring days at home, but of course I am thankful that I am back at work.
    The joint pain is from the chemo, I believe anyway. Its what i have read. I didnt really have a lot of joint pain before transplant and had a buttload after. You are ROCKING the blue wig and wish I would gotten myself one or even a purple one :)
    I love you Steph, you're an amazing woman and I cant wait for the day I get to meet you.