Monday, July 27, 2015

The final leg: the time has come

Reality hit today, hard. The last leg is here. The difficult part of the path.

The PICC line was placed in my upper arm today, that runs a line to my heart. It has three lumens for administering chemo and other fluids, medication as well as drawing labs when needed.

Tonight is my last outpatient day until I'm discharged for home. My future includes copious amounts of chemo (6 days), followed by recovery time (10 days) while we wait for my bone marrow to recover (a.k.a blood level come back into safe ranges).

The hair is officially shaved. The head covers have come out.

Nick and I thought it was fitting to spend my last night of freedom eating on an outdoor patio or terrace. The weather was stunning today, so we did just that. The Peninsula Hotel has a restaurant on a terrace that is beautiful.

Right now, nerves are all over the place. I cry, I laugh, I'm excited, I'm scared.
I'm packed and ready to show up at 7:30am.

My brother, with his unyielding support, is here, keeping all the ducks in a row. I'd like to publicly announce that he is the raddest person - as a brother, husband, father and friend. He really is. I'm so lucky to be his baby sister. We video chatted with his kids to show them bald auntie. Can't wait to be running around with them in the future.

As I type this the tears just flow. I cant explain the combination of gratitude, hope, anxiety and love that just keeps ebbing and flowing.

I could not have gotten through the first phase without Chad, Amy, Dana and Ola. My brother Nick, my parents and Jodie will get me through the final phase--with the help of Dr. Burt and his amazing team. My little brother then starts the "at home" recovery support.

#somuchloveinmylife #extrabondingtime  #plantopayitforward

I hope to make as many updates as possible wile inpatient. It will all depend on how I feel. Its a roller coaster the whole way, so I will try to make typing time on the "weeee!" days.

Final thoughts for today: forgive the language.
I have been softened and moved by the kindness poured my way. Far more sensitive and open-armed in general these days. I have cried more the last 2 months than I had in three years.. It has also brought up intolerance of "victim" mentality.  Fight, research, ask for help, advocate for yourself, no matter the situation. I am indeed different than I was 18 mo. ago, but in a good way.

In a strange way, I have CIDP to thank for my personal growth. I, however, will never respect or miss CIDP. Trust me.


  1. So, the final leg of the Chicago marathon is about to be run. You're allowed to be teary. It's a huge journey you've undertaken. One that started out many months ago with great trepidation. I remember when you first told me about your intention to apply to North Western. I was worried for you. When you said you'd been accepted, my heart did a happy dance at the thought you just may be cured from this God awful CIDP. You have had some amazing support from wonderful friends and family from both near and afar. Your journey is heading into the final laps now, so darlin, pull up your big girl panties, lift that chin up and keep your eyes focussed on the finish line. Cleo and I are waiting there. :). Gentle hugs, much 💖💖💖 You've got this.

  2. You are and always have been one of the strongest, smartest, most hilarious and kind hearted humans I've ever known! Love to see that you're still blogging with positive vibes and now allowing this evil diesase get the better of you. Praying for you and your body as you take your final steps down the yellow brick road! Aloha au ia 'oi sister!

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  4. I admire your strenth. I understand the way you describe your feelings regarding cidp and how it shapes us, our thoughts, our outlook and our lives. We grow richer from our experiences. God bless you.

  5. You are an incredible human. I so admire your strength and am so proud of you. Hang in there, every day is one step closer. And just so you know, Braxton says he doesn't care if you love Chad, he's still waiting for you. Sorry Chad. (FYI for those who don't know, Braxton is my 12 year old son who is in love with Steph).

  6. Stephy - You are so very BRAVE and STRONG and AWESOME. Love you tons. Hang tough. You are a warrior. XOXO

  7. Steph, I don't even know you. And, I love you. You are a very strong woman. Never ever doubt it.

  8. You are in my prayers. You will conquer gbs/CIDP! Love from one turtle to another.:)